tag:blogger.com,1999:blog-105572632024-03-08T03:15:42.722+00:00Diary of a GoldfishThe Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.comBlogger817125tag:blogger.com,1999:blog-10557263.post-52345640209924382702017-12-24T11:46:00.001+00:002017-12-24T12:03:49.252+00:0037 - A review of the year.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxRI-gJeOJCPWsWDfCWt4ICrTiCPs03HEh76FYuHqubC_LOl43WbMO7RJuZwztRN6QTH0sAPqLxQ3KktVyGnVOXT3wEnDhZTT_gw25XkkT29VYSNqeW1PbGjJe25BVIdmLvvkd/s1600/25587891_1282797375154621_8783485126373671860_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxRI-gJeOJCPWsWDfCWt4ICrTiCPs03HEh76FYuHqubC_LOl43WbMO7RJuZwztRN6QTH0sAPqLxQ3KktVyGnVOXT3wEnDhZTT_gw25XkkT29VYSNqeW1PbGjJe25BVIdmLvvkd/s320/25587891_1282797375154621_8783485126373671860_o.jpg" width="320" /></a>Today I am 37 years old. This year has been very much more about being than doing, but I've spent a lot of relatively idle time very well. Lots of books, lots of TV, lots of films, lots of time lying around in the garden. Lots of drugs too, although they've been less fun and have meant very many short periods of time – a few hours, a morning, an afternoon here and there that probably add up to a good chunk of the year – passed in a blur.<br />
<br />
So, my year in bullet points:<br />
<br />
<ul>
<li>For the first time since the henna years of my early twenties, I dyed my hair. I have considered the prospect of colourful hair for ages - probably most of my adult life, but I was inexplicably nervous and worse - ten years ago, I thought <a href="http://blobolobolob.blogspot.co.uk/2007/05/great-purple-hair-dilemma-of-2007.html" target="_blank">I was probably <i>too old</i></a> to have purple hair. </li>
</ul>
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<blockquote class="tr_bq">
Early in the year, I was suffering quite a bit, hardly doing any of what makes me myself, so finally colouring my hair (or Stephen doing it for me while I lay on the floor with old towels and bin-liners over a pile of pillows) was a profound assertion of identity. It also helped that I worked out that blues, greens and purples go nicely with my natural brown hair, so I avoided some of the pitfalls of dying my entire head (such as needing to keep it up on a schedule) by dying streaks and the ends of my hair. I'm very happy with it. </blockquote>
<ul>
<li>I bought a lot of cheap terracotta pots, painted patterns on them and planted things in them. And I mean a lot of pots - at least a few dozen. I painted my walking stick. I painted a few canvases. I painted a whole load of dried up poppy heads. Other things too - I've done a lot of painting. </li>
</ul>
<ul>
<li>Stephen and I started a virtual tour of the UK through books, reading one novel set in each county. We started in Cornwall and we're now in Anglessey. This is a lot of fun. </li>
</ul>
<ul>
<li>With the considerable help of my parents, we decorated our bedroom. This has made life considerably more comfortable, even though it was one of those things where something only bothers you when you have the opportunity to change it. The old paint colour was so faded that we literally have no idea what shade it once was - it could have been a blue, it could have been a brown. Now it is an actual colour and that colour is green. </li>
</ul>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjefNt0U_AsB1sR8htvDWM1oSZaVPoF3CFQ-kmQOqTJGq_OWgEHH2IEzeCFxgQKIMmtDNm19iyR4E1LWjXTJPEix-hkVDOhMk6IctznrXKc4Ft7A439gQwnovDl_I0P04QB64a2/s1600/21013902_1184221085012251_3711095130552570688_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1500" data-original-width="1067" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjefNt0U_AsB1sR8htvDWM1oSZaVPoF3CFQ-kmQOqTJGq_OWgEHH2IEzeCFxgQKIMmtDNm19iyR4E1LWjXTJPEix-hkVDOhMk6IctznrXKc4Ft7A439gQwnovDl_I0P04QB64a2/s400/21013902_1184221085012251_3711095130552570688_o.jpg" width="283" /></a></div>
<ul>
<li>In the summer, we made a Boudica outfit for our niece Sophie. I wasn't really up to using the sewing machine, so our efforts went into making an awesome shield. And it was awesome and she loved it. The fact she thought it was a Viking costume only demonstrates what a clever girl she is to know that Vikings did not typically wear horned helmets and included women warriors. </li>
</ul>
<ul>
<li>Because of my increased level of impairment, we started this year in a bit of a mess, but we've got much better at organising ourselves, asking for help and accepting help when offered. I'm really proud of us, as well as friends and family who have supported and encouraged us.</li>
</ul>
<ul>
<li>Stephen and I played some <i>Zombicide</i>, a tabletop game and far more importantly and impressively, Stephen developed <a href="http://mister-goldfish.blogspot.co.uk/2017/05/zombicide-survivors-with-impairments_39.html" target="_blank">a team of disabled characters</a> in order to increase representation in the post-apocalypse. </li>
</ul>
<ul>
<li>We grew a lot of food including a load of chilis, various salad leaves, potatoes, turnips, sweetcorn, various beans and peas, kale, and tiny sprouts and carrots. I also had much more success with growing flowering plants from seed and cuttings. </li>
</ul>
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<div>
<ul>
<li>After a long saga and spending way too much time and energy coping with pain this year, I finally saw a pain specialist in November and feel very much more positive about the future. I have already been putting new strategies in place and there will be pharmaceutical experiments in the new year. </li>
</ul>
</div>
<ul>
<li>I thought I should share the three or four things I managed to write for the F Word this year, but turns out there were nine! Considering it feels like great periods of the year passed without my being able to put a few sentences together, it turns out I've not done too badly:</li>
</ul>
<a href="https://www.thefword.org.uk/2017/03/all-singing-all-dancing-all-rather-toxic/">All singing, all dancing, all rather toxic</a> - a review of <em>Crazy Ex Girlfriend</em>.<br />
<a href="https://www.thefword.org.uk/2017/05/imaginary-families-and-the-social-care-crisis/">Imaginary families and the social care crisis</a><br />
<a href="https://www.thefword.org.uk/2017/08/its-time-to-simplify-the-gender-recognition-process/">It's time to simplify the gender recognition process</a><br />
<a href="https://www.thefword.org.uk/2017/08/i-believe-in-straight-people/">I believe in straight people</a> - answering one of those articles which claim everyone is bisexual.<br />
<a href="https://www.thefword.org.uk/2017/09/in-defence-of-strictly/">In defence of Strictly</a><br />
<a href="https://www.thefword.org.uk/2017/10/why-are-men-so-worried-about-false-allegations/">Why are men so worried about false allegations</a>
<br />
<a href="https://www.thefword.org.uk/2017/11/shedding-light-in-dark-places/">Shedding light in dark places</a> - a review of <em>The Keepers</em>
<a href="https://www.thefword.org.uk/2017/11/tv-bisexual-characters/">Why are TV bisexuals such complete jerks?</a><br />
<a href="https://www.thefword.org.uk/2017/12/we-need-to-live-before-were-helped-to-die/">We need to live before we're helped to die</a>
about assisted dying.<br />
<br />
I'm currently planning to start a new blog, and leave Diary of a Goldfish pretty much as it is. I've blogged her for nearly 13 years and in recent years, I have slowed right down and wound up posting occasional epic posts. I want to write more short blogs about various bits and pieces, and I especially want to blog about my garden; it means so much to me and I want to share some of that joy with other people. So the new blog may be garden-focused but with plenty of social justice and general nonsense in the mix. Well, we'll see.<br />
<br />
I hope everyone reading this has a happy and comfortable festive period and a super New Year!<br />
<br />
<br />
<br />
[Images descriptions:<br />
<br />
1. A chocolate birthday cake with two candles in the shape of a three and a seven. Pale-skinned hands are holding onto the plate.<br />
<br />
2. A chili plant in a patterned pot on a window sill. The chili plant has small dark fruit on it and looks rather like a miniature tree. The pot as has geometric pattern in pale blue, black, purple, green and white.<br />
<br />
3. A Boudica outfit consisting of a teal party dress, a grey cloak that looks like wool but is made from a fleece blanket, a gold crown and shield. The shield has a stylised horse and sun on it as well as some gemstones and is based on an Iceni coin.<br />
<br />
4. A smiling white woman (me) holding a pair of turnips up to her ears. The turnips are round, white and a deep pinky purple and still have their leaves on them. A third turnip sits in the woman's lap.]The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com0tag:blogger.com,1999:blog-10557263.post-59480994585547181912017-05-31T13:25:00.000+01:002017-05-31T13:25:02.221+01:008 reasons decent people might mistakenly vote Conservative<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoLWZI9Lvoj8yJ1Da-Sd-2xrtsgP5rAUrE4mhnRDopMg5j0dpsRs4rjlkxLRXy0stUiAh239zbR9U6gy2sJpJvs4VlwTFemVI2ABoVeDft9AE2ZqhT8CdafAmrSZ9TWcDiGmEL/s1600/19231450121_af2a53952c_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoLWZI9Lvoj8yJ1Da-Sd-2xrtsgP5rAUrE4mhnRDopMg5j0dpsRs4rjlkxLRXy0stUiAh239zbR9U6gy2sJpJvs4VlwTFemVI2ABoVeDft9AE2ZqhT8CdafAmrSZ9TWcDiGmEL/s320/19231450121_af2a53952c_o.jpg" width="320" /></a></div>
<div class="western" style="margin-bottom: 0cm;">
There are some
arguments worth having. We're about to have a general election in the
UK and while it is likely that the Conservative Party will remain in
place, it is worth arguing for every vote against them. Politicians
and political parties are at their most dangerous when they feel safe
and unopposed.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This argument is worth having because many people have not made up their minds yet and others may be thinking one way but could be talked around. In recent weeks, I've been frustrated with those who share my approximate politics but seem to have lived their entire lives in communities where everyone votes in the same way, allowing them to imagine and then declare that people who vote Conservative are universally wealthy, self-interested and prejudiced in all variety of ways. If this were the case, political arguments would be pointless. As it is not the case, such rhetoric risks pushing folk off the fence in the wrong direction.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Some political arguments are not worth having. Some people have such extreme and hateful opinions that talking to them about politics is not only pointless, but can only feed their thirst for attention and power over others. If such a group of people were about to take power on June 8th, our strategy would need to be very different. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
As it is, there's a possibility we can still win this one, or at least minimise the damage. So I thought of everyone I've ever known who admitted to considering a vote for the Conservatives and (having eliminated the ones who fancied John Major or wanted revenge on their socialist father) I compiled the following reasons a decent person might mistakenly vote Conservative. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<b>1. Some folk have always identified as
Conservative-voters:</b></div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
I've known builders and
hair-dressers who have always voted Conservative because of this idea
that a Conservative government will work in the interest of the
self-employed. I've known Christians (who have not all been middle
class and white) who have always voted Conservative because of this
idea that a Conservative government will support roughly “Christian”
values (I've put this in inverted commas because most Christians I
know care very much more about child poverty or the plight of
displaced people than they do about tax breaks for married people. However, they still might vote Conservative depending on how they understand such issues.).</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE1HJfe6f-tZyhQI-1u1utBtdA9-tObCzg7ZLxcpbpsjHSSpbZoc5GAH9dX7Lkv5mtv6t_TrsqkHsLVz_4aE3426Sf09V4flSuf9eXo1VIwXBpy1jBjQpB0PgOnFn17FzuOS_G/s1600/2618681122_7aaf0f3ec5_o.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="886" data-original-width="1332" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE1HJfe6f-tZyhQI-1u1utBtdA9-tObCzg7ZLxcpbpsjHSSpbZoc5GAH9dX7Lkv5mtv6t_TrsqkHsLVz_4aE3426Sf09V4flSuf9eXo1VIwXBpy1jBjQpB0PgOnFn17FzuOS_G/s320/2618681122_7aaf0f3ec5_o.jpg" width="320" /></a>Where I live in rural
East Anglia, voting Conservative used to be a mandatory condition of
employment; once working men got the vote, any suspicion or rumour
that you were going to use your vote otherwise would lose your job with the lord or landowner. Most local people worked for the lord or landowner. Left-wing city-dwellers sometimes imagine that safely blue
rural seats like mine are populated by tweed-addled gentry or
commuting investment bankers – that we don't have a housing crisis,
foodbanks and the rest – but the reality is that generations had no
choice about who to vote for (it is still perfectly legal to fire
someone for their political affiliations on the UK mainland) and our local identity as
Conservative-voters kind of stuck. </div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
Even today, the most
prominent political campaigning I see are the big Conservative
billboards erected in fields by the road. People who own fields still
hold a lot of political power in rural areas. Conservative
Governments tend to look out for people who own fields – green,
brown and otherwise. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<b>2. Theresa May is not
Donald Trump</b></div>
<div class="western" style="margin-bottom: 0cm;">
(or Marine Le Pen or Geert Wilders etc.)</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Since 2010, the Conservative government have stirred up and <a href="http://www.independent.co.uk/news/uk/politics/immigration-foreign-students-net-migration-drop-the-target-theresa-may-universities-a7704211.html" target="_blank">exploited fears</a> about immigration, writing new laws which <a href="http://www.bbc.co.uk/news/uk-34191606" target="_blank">split families apart</a> and more recently, hare holding EU migrants, upon which our communities, <a href="https://fullfact.org/immigration/immigration-and-nhs-staff/" target="_blank">public services</a> and economy depend, <a href="http://www.independent.co.uk/news/world/europe/brexit-latest-eu-national-right-to-live-uk-theresa-may-panic-a7602191.html" target="_blank">to ransom</a>. Oh and now there's <i><a href="https://www.theguardian.com/commentisfree/2017/mar/19/empire-20-is-dangerous-nostalgia-for-something-that-never-existed" target="_blank">Empire 2.0</a></i>. This government's treatment of disabled people has been so appalling that the UK has been <a href="http://www.independent.co.uk/news/uk/uk-disability-rights-un-report-government-treatment-disabled-people-a7616101.html" target="_blank">condemned by the UN</a>. The demonisation, interference and deprivation some of us have experienced has been fascistic in nature, but even so, we are not living under a fascist regime. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
There's a huge difference in a government which does this stuff under the guise of "security" or "austerity" and a government whose leader makes explicitly racist remarks, hangs out with unashamed white supremacists or mocks disabled people to the cheers of their supporters (if prominent Tories have done any of those things, even I am unaware of it). If I was a US American, I would struggle with the knowledge that any friend, family member or neighbour of mine had voted for someone who repeatedly spoke of people like me with utter contempt and promised to remove the free medical care upon which my life depends. When I meet folks who admit they voted Conservative, I assume (usually correctly) that they don't know the first thing about Welfare Reform and haven't heard of <a href="https://www.theguardian.com/uk-news/2015/jun/15/yarls-wood-report-calling-for-closure-decade-abuse-complaints" target="_blank">Yarl's Wood</a>. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
People who vote Conservative don't have to be racist and they don't have to hate disabled or poor people. If everyone was equally and thoroughly informed about politics, it would be a different matter - what's happening is wrong, lives are at stake and everyone who knows about it has a duty to do the bare minimum by voting against it. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But not everyone knows about it or understand things the same way. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<b>3. Some folk are much more comfortable with the idea that people are rewarded for wrong-doing than the idea that innocent people are punished.</b></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
In conversations with non-disabled people (and even the odd disabled person) about <a href="https://www.theguardian.com/commentisfree/2017/may/30/disabled-readers-austerity-disability-cuts" target="_blank">the damage caused by benefit and social care cuts</a> and <a href="https://www.theguardian.com/society/2012/aug/14/disability-hate-crime-benefit-scrounger-abuse?newsfeed=true" target="_blank">the rhetoric surrounding them</a>, I have never heard that disabled people deserve to be demonised. Instead, I hear that disability fraud is endemic and while of course “genuine” disabled people – people like me – deserve much better treatment, the blame lies firmly at the door of people who have been exploiting the system. The governments own stats <a href="https://www.theguardian.com/news/datablog/2013/may/13/welfare-fraud-error-universal-credit" target="_blank">put this fraud at around 0.7%</a>.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Of course some people do genuinely hate disabled people. But far more common is the hatred of an imagined mass of non-disabled people who are exploiting a system designed to support disabled people. People believe in that and of course, fraudsters – though rare - do exist and are often frustratingly conspicuous.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
In the same vein, some people believe we should halt all immigration, but more common is the belief in significant numbers of benefit tourists or criminal gangs trying to get here because we're a “soft touch”. <a href="http://www.oxfordtimes.co.uk/news/15318660.Oxford_academic_slams_politicians_over__moral_failure__in_handling_refugee_crisis/" target="_blank">We're sitting on our hands</a> during the greatest refugee crisis of a generation, but "genuine" cases (that word again) would be welcome if it wasn't for so many villains knocking on the door.</div>
<div class="western" style="margin-bottom: 0cm;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9zSHc_ki8Y0urY9H0TPd9Z6pJ1anUsYlVw4y90PSMvbQ_pepWTTlEaSz2BT-JT_h8IZcHDCjsF2o1zISJH9lu52-veggr0809aAD6r83XamPXt2R2LptPdvg83gOOs1wRoZ9/s1600/9376736345_6f26440650_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1000" data-original-width="1500" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9zSHc_ki8Y0urY9H0TPd9Z6pJ1anUsYlVw4y90PSMvbQ_pepWTTlEaSz2BT-JT_h8IZcHDCjsF2o1zISJH9lu52-veggr0809aAD6r83XamPXt2R2LptPdvg83gOOs1wRoZ9/s320/9376736345_6f26440650_o.jpg" width="320" /></a></div>
<div class="western" style="margin-bottom: 0cm;">
There is a bit of a chasm between people who tend to get involved in social justice and those that don't. Those of us actively involved (however modestly) in trying to make the world a fairer place know how extremely unfair it is already. And that hurts – usually, it has hurt us personally and deeply. However, it is very difficult to effectively communicate these ideas with people who are not yet prepared to accept that many of life's misfortunes are not pure bad luck, but the work of prejudiced, power-hungry, uncaring or malicious people.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It's not that those of us who see this are looking at a bleak world, but merely a world which requires work and self-awareness. Hordes of limping fraudsters and <a href="https://fullfact.org/europe/over-here-and-under-arrest-are-romanians-responsible-90-atm-crime/" target="_blank">Romanian ATM-robbers</a> may be easier to stomach.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<b>4. The big problems in
the country are invisible to many people. </b>
</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
There are currently <a href="http://researchbriefings.parliament.uk/ResearchBriefing/Summary/SN02110" target="_blank">75,000 families</a> (consisting of at least one parent and at least one
child) living in temporary accommodation in the UK – that's B&Bs,
and not the sort like that nice cottagey place in the Cotswolds with
too many doilies. 75,000 families is a lot of people. It's a scandal.
But there are 65 million people in the UK, so there's no guarantee that you know any of them (or that they would let you know how they were living if you did).
</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
There are <a href="https://www.theguardian.com/society/2017/apr/20/over-200000-homes-in-england-still-lying-empty-despite-housing-shortages" target="_blank">more empty houses than homeless families</a>.
There is planning permission for thousands of more houses and
developers who have promised to build them. However, there is an
awful lot of private money to be made out of house prices and rents
that most people can barely afford and some can't afford at all. It
costs the state a fortune to keep a family in even the crappiest
guest house, but this particular government favours the interests of
the very rich (on account of them being very rich people themselves).</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJDTkwp3OxfZ7sx_LC_y-op8BJ6uNTRB8a5olNoIMY__p8rkj45PjICdK4SRiXGjTSg_pZIiWLnQvylT_eRGjIzIalHtLYz2kq7ES1ptSf5myUIFAR4zUPXPY2WEc29AD9pZbE/s1600/255646_88fccef7.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJDTkwp3OxfZ7sx_LC_y-op8BJ6uNTRB8a5olNoIMY__p8rkj45PjICdK4SRiXGjTSg_pZIiWLnQvylT_eRGjIzIalHtLYz2kq7ES1ptSf5myUIFAR4zUPXPY2WEc29AD9pZbE/s320/255646_88fccef7.jpg" width="320" /></a>I use this example,
because it was something I only learned about a few months ago. I
knew quite a lot about other aspects of the housing crisis, but had
no idea so many families were homeless just now because I don't think
I know any of those families.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
I would guess that most
people don't know the difference between ESA, PIP or universal credit (several politicians are muddled on the
subject). I have heard people speak with absolute bewilderment as to how anyone might need a foodbank because they've been poor or unemployed and they never did. Folk just don't know the scale of what has been happening in the
country because it is extremely bad on a relatively small scale. We
don't have very visible problems such as high unemployment. However,
to be unemployed right now is to live far more precariously than it
was ten, twenty or thirty years ago.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<b>5. The media is biased
(but it is not a conspiracy).</b></div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
The media is made of a
diverse group of people, mostly employed by wealthy individuals
motivated primarily (though not exclusively) by money. Money is made
by selling newspapers, attracting clicks or viewers and so forth. The
people who own large media corporations tend to (not always or
exclusively) prefer right-wing governments because they (a) look
after rich people (b) tend to (not always or exclusively) create
economic and social instability, which in turn creates dramatic
headlines, which in turn sells copy. This is not a conspiracy –
this is capitalism.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYjk56QphjpuFAugqSNT5sPU3UeAAvpQJ_eytqNRM32xj5OWCq3UovuAevE4FnMB_ktAYoeECmb2xgT6ty11F3lt4MhCeTNUisc_ovL1huEFRLzpdp5MM7-vpadAUtkfpK9Jq/s1600/tabby-kitten-1517475_1280.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="853" data-original-width="1280" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLYjk56QphjpuFAugqSNT5sPU3UeAAvpQJ_eytqNRM32xj5OWCq3UovuAevE4FnMB_ktAYoeECmb2xgT6ty11F3lt4MhCeTNUisc_ovL1huEFRLzpdp5MM7-vpadAUtkfpK9Jq/s320/tabby-kitten-1517475_1280.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I installed a Chrome extension which replaced pictures of<br />Nigel Farage with kittens at a point his unelectable face <br />was everywhere. It's an improvement, isn't it?</td></tr>
</tbody></table>
<div class="western" style="margin-bottom: 0cm;">
Even organisations like
the BBC, who are very heavily obliged to be politically impartial can
never present a truly balanced view of events as they unfold. The need to present “balance” occasionally winds up
with a guest campaigning against drink-driving contrasted with
another guest who thinks he's a better driver after he's had a few.
And of course, they too need clicks and ratings, which conflict and
controversy drive along (thus, for example, <a href="http://www.huffingtonpost.co.uk/entry/question-time-ukip-nigel-farage_uk_58d95295e4b03787d35ae186" target="_blank">the endless appearance</a> of Nigel Farage, who was repeatedly rejected as an MP and whose party's
parliamentary power peaked at a single seat, now lost).</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
Not only do we mere
mortals forget all this, but we simply don't have the time or energy
to consider the way every story we hear or read is being told. I am
extremely interested in this stuff – I love both statistics and
story-telling, and am both fascinated and appalled by the way these
are combined to present the most sensational possible news. However,
even I get tricked about subjects I'm not especially invested in.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<b>6. Misinformation
happens easily and quickly even without manipulation and “fake
news”.</b></div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
One day, a few years
back, a stranger came to the door raising money for the local Air
Ambulance. They explained that the Air Ambulance received no state
funding as our government preferred to spend our taxes on putting
Indians in space. This was one of those remarks where you're not sure
quite what's going on in a conversation, but it feels like you
probably want out. I can't stand up for long anyway, so I said as
much and promised to look the charity up on-line.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
A few days later, I
mentioned this strange exchange to a friend and they said, “Oh
yeah, it wasn't that the UK was putting Indians in space, but rather
some of our foreign aid had been used by the Indian government
towards their space programme.”</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
I didn't disbelieve my friend, but I turned to Google anyway. The story was from three or four years
earlier, when the government froze levels of foreign aid to India.
However, there was an argument made at the time (by <a href="https://mediadiversified.org/2017/04/28/mp-accuses-bame-book-prize-of-discrimination/" target="_blank">Philip Davies MP</a>,
incidentally) that we shouldn't give any aid money to a country which
is rich enough to have its own space programme. <a href="http://www.bbc.co.uk/news/magazine-12607537" target="_blank">This BBC article</a>
explains some of the complexities within foreign aid.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
Absolutely no UK money
has ever been used in the (modest) Indian space programme.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
Most people don't buy
newspapers. There's some evidence that even when people link to a
story on Twitter or Facebook, <a href="https://www.washingtonpost.com/news/the-intersect/wp/2016/06/16/six-in-10-of-you-will-share-this-link-without-reading-it-according-to-a-new-and-depressing-study/?utm_term=.0d1e811ac843" target="_blank">they often don't actually read the story</a>. In any case, most of us consume most of our news in small
snippets – in headlines, in tweets, in the first few minutes of TV
news, in the on-the-hour bulletins on radio and in disjointed
conversations. It's not people's fault when they end up with the
wrong end of the stick, especially when it confirms pre-existing
prejudices.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
This is why it is
always important to talk to folk about what's going on in the world.
Human beings are extremely social, and we wield an awful lot of power
over one another. Arguing directly “You're wrong about this!” is
often hopeless, but telling stories, telling our own stories and
experiences or discussing subjects we know well can help prise open
folks' eyes.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
<b><br /></b></div>
<div class="western" style="margin-bottom: 0cm;">
<b>7. Lots of people vote
local at General Elections.</b></div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
If you're not
especially interested in national politics (and goodness me, I'm not
interested – it just effects me and those I care about too profoundly to
ignore it), but your sitting MP helped out your uncle with a boundary
issue or put in a good word for your friend when they lost their
benefit (because some Conservative MPs seem to really care about
their constituents in crisis,
even if their own voting choices have caused the trouble), then you're
going to vote for that guy rather than a stranger you know nothing
about.</div>
<div class="western" style="margin-bottom: 0cm;">
<b><br /></b></div>
<div class="western" style="margin-bottom: 0cm;">
<b><br /></b></div>
<div class="western" style="margin-bottom: 0cm;">
<b>8. It's could be worse.</b></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Remember after David
Cameron resigned last summer? I wanted Theresa May to be prime
minister. I remembered this was <a href="https://www.theguardian.com/law/2011/oct/04/theresa-may-wrong-cat-deportation" target="_blank">the lady who confused a man'spartner and his pet cat</a> with the words “You can't make it up!”
(she just did). But remember our other prospects? Boris Johnson,
Michael Gove, Andrea Leadsom. Theresa May was by far the best of a
very bad bunch. Of course, it's not impossible the Conservatives stay in Government but May loses her seat... best not think about that.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
</div>
<div class="western" style="margin-bottom: 0cm;">
</div>
<br />
<div class="western" style="margin-bottom: 0cm;">
Things do not feel very
stable just now, and even though May and her colleagues are demonstrably part of that
instability, the entire general election campaign is based on the
idea that the Conservatives under May somehow are “strong and
stable” in comparison with other options. If people's quality of
life has not deteriorated (and it hasn't for many people, even while it
has plummeted for some) but they feel nervous for the future, they're
likely inclined to vote for the status quo. Even though of course,
we're about to leave the EU – the status quo is completely and
utterly off the table.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<i>Image descriptions & attribution:</i></div>
<div class="western" style="margin-bottom: 0cm;">
<br />
</div>
<div class="western" style="margin-bottom: 0cm;">
The first image is a photograph of two dogs outside a polling station. The most prominent dog is a small terrier who is wearing a blue rosette. Behind them sits a black dog whose type I couldn't identify. This image was found <a href="https://www.flickr.com/photos/ashleycoates/19231450121" target="_blank">on Flickr</a>, belongs to Ashley Coates and is used under a <a href="https://creativecommons.org/licenses/by-sa/2.0/" target="_blank">Creative Common's License</a>.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The second image is a photograph of a scarecrow in a field. The scarecrow wears a hardhat and long grass or cereal comes up to its waste. This image was found <a href="https://www.flickr.com/photos/peterpearson/2618681122" target="_blank">on Flickr</a>, belongs to Peter Pearson and is used under a <a href="https://creativecommons.org/licenses/by-sa/2.0/" target="_blank">Creative Common's License</a>.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The third image is a photograph of a van on the side of which it reads "In the UK illegally? Go home or face arrest" and there follows details or who to contact. This image was found <a href="https://www.flickr.com/photos/oddsock/9376736345" target="_blank">on Flick</a>r, belongs to Ian Burt and is used under a <a href="https://creativecommons.org/licenses/by/2.0/" target="_blank">Creative Common's License</a>.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The forth image is a photograph of a terrace of houses where the windows and doors have been boarded up and the front gardens left to become overgrown. This image was found <a href="http://www.geograph.org.uk/photo/255646" target="_blank">on geograph</a>, belongs to Carl Baker and is used under a <a href="https://creativecommons.org/licenses/by-sa/2.0/" target="_blank">Creative Common's License</a>.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The fifth image is a photograph of a tabby kitten rolling on its back while gazing at the camera. This image was found <a href="https://pixabay.com/en/tabby-kitten-gray-kitten-wild-1517475/" target="_blank">on Pixebay</a>, is by EugenieM and is in the public domain. </div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com3tag:blogger.com,1999:blog-10557263.post-44625197497899385612017-05-01T00:02:00.000+01:002017-05-01T07:33:14.010+01:00BADD 2017- Six ways disablism makes it harder to live with chronic pain<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlG7-IWPr3hTnOQRB2JGxQEMcAR_-gcvKeTsVg66maM-aWdNlvZHwzE0wy3gZEWpA-4tRiHo0I63s706PAhbYLzsbsxPq-jbK47kDJlAgI0WfPFpuISLDGcc5iju9JPbclNl0y/s1600/bad01.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Blogging Against Disablism Day, May 1st 2017" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlG7-IWPr3hTnOQRB2JGxQEMcAR_-gcvKeTsVg66maM-aWdNlvZHwzE0wy3gZEWpA-4tRiHo0I63s706PAhbYLzsbsxPq-jbK47kDJlAgI0WfPFpuISLDGcc5iju9JPbclNl0y/s320/bad01.gif" title="Blogging Against Disablism Day, May 1st 2017" /></a></div>
Today is Blogging Againgst Disablism Day 2017. Please <a href="https://tinyurl.com/badd2017" target="_blank">check out the main page</a> to read other contributions or add yours to the archive.<br />
<br />
[<i>Content warning for abstract discussion of mental health stigma, skepticism about illness, pressure around exercise, drug addiction.</i>]<br />
<br />
<i>Audio for this blog post is here:<audio controls="https://archive.org/download/six_ways_pain/pain.mp3"> </audio></i><br />
<br />
(If you cannot see the audio controls, your browser does not support the audio element.)<br />
<br />
<br />
<br />
Last autumn, as has happened twice before in the twenty-one years since I got sick, my pain became suddenly and inexplicably worse. Since then, pain and pain management have become more dominant features of my day. Lately I've been thinking about the ways in which disablism makes life with chronic pain tougher than it needs to me.<br />
<br />
<br />
<b>1. Pain as suffering.</b><br />
<br />
My love for <a href="http://mister-goldfish.blogspot.co.uk/" target="_blank">Stephen</a>, as well as my friends and family is the most fundamental fact about who I am. However, if I were to die in an especially strange or amusing way so to make headlines, news reports would not read, “The Goldfish loved her husband, friends and family.”<br />
<br />
The would instead say, “Sources have said...” or “The Goldfish has been described as loving her husband, friends and family.”<br />
<br />
This is because it's not something that strangers can know. I'm married, I know these various people and am related to that bunch, but for all anyone else knows I can't stand a single one of them.<br />
<br />
Yet, in this hypothetical report about the fatal inflatable crocodile accident, I can guarantee that it would read, “The Goldfish suffered from chronic pain.” or “The Goldfish was a sufferer of chronic pain.”<br />
<br />
This is something else a stranger cannot know. It's very unlikely that I would have enjoyed chronic pain, but suffering, and especially my identity as a sufferer, is a presumption.<br />
<b><br /></b>
<b>I have chronic pain. I am in pain right now but I am not suffering. Sometimes I suffer, but this is not a fundamental part of who I am. I am not a sufferer.</b><br />
<br />
I have become especially sensitive to this as pain has rendered the enjoyment of life a little more of a challenge. Several people, including myself, have been working very hard to ensure that I am not suffering most of the time. I just have pain. I am a person with chronic pain.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6hSSQZ3Wde7HejRs9Ji-0PKl7IPikpmgOGRpLiRPo6Y0GVAepsBFvqubHfJQ4P2cY5A41UL_BPHyWy-3kqShxfY2aUPycWQsjxYbrjrNpiP-GbRx4jlN2mv_qQqR9_KrYrM-A/s1600/tumblr_ooay6vVFzw1tcq8rio1_1280.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a>Of course, I am extremely fortunate (and I'm going to mention this a lot). Chronic pain can be a thousand different things and I am very lucky with the type I have; my pain is sometimes severe, but when I hear about other people's pain in different parts of their bodies, I always imagine I have things a bit easier.<br />
<br />
Meanwhile, for many years, pain had a far more profound effect on my life because my circumstances were so much more difficult. This bad pain period has made me somewhat more isolated, but not as much as it once would have. It has not resulted in poor diet due to my inability to get food for myself. It does not make it harder to stay warm because I can afford to have the heating compensate for moving around less. It makes it harder to get clean and dressed, but I have help with that, various different ways of keeping clean and I am not going to be mocked if I look a little unkempt. I have even been offered carers to come in and help with getting dressed every day, but I don't really need or want that. As I pointed out to Social Services, I do have very nice pyjamas.<br />
<br />
For a long time, I was in no position to manage my pain, received very little help and any deterioration of my health and mobility was met with an increase of anger and violence towards me from the person I lived with at the time.<br />
<br />
All this is about circumstance, other people and culture rather than the pain itself, but it effected the way I framed my pain as a sort of punishment or my body's treachery. <a href="http://blobolobolob.blogspot.com/2016/03/on-loss-chronic-illness-anger.html" target="_blank">It helped me stay angry</a> with my body and myself to some extent. There seemed no way of making things better.<br />
<b><br /></b>
<b>As with all aspects of impairment, we experience pain in a context and there's always a danger of mistaking that context – almost always the product of our disablist culture – for the effects of pain itself.</b><br />
<br />
<br />
<b>2. Physical suffering as legitimacy</b><br />
<br />
In the management of chronic pain (or indeed, any health condition), there are two strategies which will do us no good whatsoever. The first is to pretend it's just not happening. The second is to focus on exactly how bad it is, the way pain penetrates our thoughts, everything it stops us doing and how much worse it could be, how unliveable, if we were somehow forced to push harder.<br />
<br />
Yet every year or two, the government sends me a form and asks me to do just that. Some of these forms are about my incapacity to perform full-time paid work. Pain contributes to this incapacity, but by far the biggest factors are fatigue and cognitive dysfunction. Often, I am simply not conscious for enough hours in a day to hold down a job.<br />
<br />
The government are far more interested in my pain. Pain is physical, pain is suffering and <a href="http://blobolobolob.blogspot.co.uk/2016/05/badd-2016-legitimate-disability.html" target="_blank">pain is legitimate</a>. The fact that pain prevents me walking or self-propelling a wheelchair more than a few metres is the reason I am found incapable of working. Someone with agoraphobia who might collapse, hyperventilating before they made it more than a few metres from their front door would not pass this test and they can't even hope to raise money for a piece of kit like a powerchair which might (partially) mitigate that limitation.<br />
<br />
As the UK benefits system has become more ludicrous and cruel and disabled people have inevitably become more defensive, I see more people associating our political oppression with how much pain and suffering we experience. We're in agony - we shouldn't have to go through this! We're in agony - that's physical, that's suffering, that's legit!<br />
<br />
<b>We shouldn't go through what we do – the scrutiny and doubt, the trick questions, the sense of having to justify our existence. But nobody should go through this.</b> Nobody should enter into any process under the working assumption that they are trying to commit fraud. There is nothing special about physical pain.<br />
<br />
<b>All games of legitimacy are disablist games which <a href="http://www.bbc.co.uk/news/uk-39097019" target="_blank">hurt other disabled people</a>.</b> But they can also effect our own relationship with pain and impairment. If we believe that any functional limitation we have – the inability to work, the need to use a wheelchair or any other kind of assistance – needs to be justified not just with difficulty but with <i>suffering</i>, it becomes extremely easy to start second-guessing ourselves. So we're in pain, but are we really in that much pain? Could we push ourselves a little harder? If we are enjoying life at all, does that mean we're not truly suffering and cannot ask for any accommodations?<br />
<br />
<b><br /></b>
<b>3. Silence as stoicism</b><br />
<br />
These days, I talk more about my pain than ever before. It's difficult and requires me to overcome significant programming. During years of domestic abuse, any mention of pain was met with an accusation of “milking it” but it's not just that. Our culture <a href="http://blobolobolob.blogspot.com/2016/10/on-loss-chronic-illness-sadness.html" target="_blank">wants disabled people to suffer</a> – and legitimises those who suffer in the right way – but it also wants us to do this suffering as quietly as possible. To be silent is to be stoic. Admiring voices often comment, especially after one of us has passed away, that “they never complained! They must have been having a terrible time, but they never said so!”<br />
<br />
Which begs the question, did they actually have so very much to complain about? And if so, why celebrate the fact that a person was in so much distress and yet felt unable to talk about it with anyone? That sounds like a really sad situation, not an admirable quality.<br />
<br />
<b>The pressure to stay quiet comes from the <a href="http://blobolobolob.blogspot.com/2007/03/tragedy-model-of-disability.html" target="_blank">Tragedy or Charity Model of Disability</a>. This is about showing courage or stoicism as a way of fighting against our supposed tragedy.</b> A silent battle is particularly appealing to the dominant culture because it allows others to project whatever they need onto our story. They can have us suffering dreadfully, to be living symbols of their compassion towards those less fortunate than themselves, when of course our lives are more complicated than that. They can have us not wanting to cause a fuss, when perhaps really we're silenced by the fear of being seen to cause a fuss.<br />
<br />
<b>True stoicism is, of course, about making the best of what you've got, focusing on the positive and putting the negative in perspective</b>. Seneca, granddaddy of Stoicism, advocated thinking through the very worst things that could happen to us, partly so we realise they're not all that bad (depends on your imagination), partly so we can prepare ourselves for disaster rather than hopelessly worrying about it, and partly so we can appreciate it when these things do not transpire. Fingers crossed!<br />
<br />
True stoicism is not about gritting one's teeth and denying reality – on the contrary – but too often we describe a person as “stoic” when we mean “they've got it bad, but they don't complain”. And as well as silencing us, this can impair our access to effective pain management. I've heard folk being described as stoic when they won't visit the doctor, when they take risks with injuries, when they refuse disability paraphernalia. Or indeed, when they refuse to take the drugs they might benefit from.<br />
<br />
<br />
<b>4. Drugs and judgement.</b><br />
<br />
Thing is, some people take drugs that do them more harm than good, or are a waste of time and money. Some doctors prescribe drugs because they feel that's what patients want and it's much cheaper and less bothersome than other options. People – especially older disabled people – can end up getting prescription drugs on repeat for years without proper review. People are on drugs for conditions which could be greatly improved with things like psychotherapy, physiotherapy or nutritional therapy. And of course drug companies are all about making money.<br />
<br />
But none of this means that we get to pass judgement on a jam-packed dosset-box.<br />
<br />
<b>The fact not every drug prescribed may be the best solution to that particular problem is the price we pay for the vast majority of drugs which either save or transform lives. </b>The fact almost all drugs have side effects and increase long-term risks of medical complications is the price individuals pay for staying alive or having a much more manageable life, even if it turns out to be a little shorter. The fact that non-drug therapies are massively underused in medicine doesn't mean that these are things people should be (or even could be) engaging with instead. These decisions are personal and often medically complex.<br />
<br />
There's a stigma attached to pain medication. There are folk who refuse to take an aspirin when they have a headache and imagine that whatever noble principle they're exercising can and should be extended to others with different sorts of pain (which is anyone who doesn't have the exact same headache). I'm going to talk about opioids in a minute. However, by far the most stigmatised drugs are anti-depressants.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6hSSQZ3Wde7HejRs9Ji-0PKl7IPikpmgOGRpLiRPo6Y0GVAepsBFvqubHfJQ4P2cY5A41UL_BPHyWy-3kqShxfY2aUPycWQsjxYbrjrNpiP-GbRx4jlN2mv_qQqR9_KrYrM-A/s1600/tumblr_ooay6vVFzw1tcq8rio1_1280.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6hSSQZ3Wde7HejRs9Ji-0PKl7IPikpmgOGRpLiRPo6Y0GVAepsBFvqubHfJQ4P2cY5A41UL_BPHyWy-3kqShxfY2aUPycWQsjxYbrjrNpiP-GbRx4jlN2mv_qQqR9_KrYrM-A/s320/tumblr_ooay6vVFzw1tcq8rio1_1280.png" width="229" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A counter-meme: "If you can't make your<br />
own neurotransmitters, store-bought is fine"</td></tr>
</tbody></table>
I still see memes picturing a pile of multicoloured pills, contrasted with a beautiful scene of nature, stating that the former is garbage or poison or similar and the latter is a cure for depression. And again, it's not as if spending time outside in nature has not shown to be beneficial for people's mental health. Ditto meditation, spending time with animals or children, exercise, gardening, art and crafts, team sports, volunteering in projects that directly help other people and so forth. A more comprehensive health system would be able to point people with all kinds of chronic ill health, plus those at risk of future problems, towards some of these activities and it would reduce the number of drugs prescribed (although, of course, it would hardly cut costs).<br />
<br />
<b>Even if all non-drug therapies and activities were made more accessible and affordable, people would still need drug treatments. It would be much better if we lived in a world where these drugs were more often only <i>part</i> of a treatment that involved all kinds of other therapeutic goodies.</b><br />
<br />
Apart from the should-be obvious facts that these pills and injections save our lives and make our lives more bearable, drug stigma and the idea that we should be doing other things, adds unnecessary pressure to people with chronic conditions.<br />
<br />
Almost anything disabled people do is often framed by others as “therapeutic” which is irritating enough (maybe even more so for disabled people who are in perfect health). Bring in this idea that nature walks or art classes could eliminate our need for the drugs we depend on and it becomes harder to access all manner of activities without feeling that we need to be looking for some kind of significant healt outcome.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUTWtKediEGaByzEiASHkZYHsy290IOd2mv7pmzO3mjn_p67xWdclnp5bCvM7JPyF-eTEtIYCO3Ci6vJY91u0zQtQUhBXsaIJ22UMUAyo7C8w4A2MpU9tdZoa2vPm0LpT7X1qE/s1600/Take+the+stairs.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUTWtKediEGaByzEiASHkZYHsy290IOd2mv7pmzO3mjn_p67xWdclnp5bCvM7JPyF-eTEtIYCO3Ci6vJY91u0zQtQUhBXsaIJ22UMUAyo7C8w4A2MpU9tdZoa2vPm0LpT7X1qE/s320/Take+the+stairs.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Take the stairs!"</td></tr>
</tbody></table>
Exercise is probably the worst example of this. Exercise is very hard for a lot of people and downright scary for some – people with chronic pain are not alone in feeling some horror at the prospect of having to spend time focused on our bodies, the way they work and the way they feel. People with mobility impairments are forever ignored in calls to <i>Take the stairs!</i> or even <i>Take the train!</i> given the poor state of accessibility on public transport. In our culture, exercise is often presented as highly goal-oriented (usually around size), and is often proposed as cure-all/ punishment; <i>Get your arse down the gym!</i> we are commanded on the grounds of any one of many diagnoses associated with poor mobility.<br />
<br />
I exercise every day in such a way many people might fail to recognise as exercise. Even so, it takes a lot to overcome the sense that I should be building myself up to something, looking to increase what I can do, trying to lose weight (which, with the exercise I do, would take a very very long time) or indeed trying to reduce the drugs I'm taking. Sometimes my exercise might contribute to being able to drop a dose of one thing or another, but if I made that the point of exercise, I would meet with disappointment almost every day.<br />
<br />
<b><br /></b>
<b><br /></b>
<b>5. The high melodrama of opioid painkillers</b><br />
<br />
In September, morphine moved from being a bad day drug to an everyday drug. Unlike all my other meds – including almost twenty years of different opioids - morphine is something people have heard of, it's something people associate with acute pain, but also abuse and addiction. It's a drug that comes up in song lyrics from time to time. Nobody ever sings about Movacol.<br />
<br />
I was reluctant to take morphine at all and once I was taking it regularly, I was nervous that my GP might be alarmed at how much I was taking. Friends and family have expressed particular concern about it, as if being on morphine makes my pain a serious matter (like it wasn't before?).<br />
<br />
More than once, my GP has assured me that I'm not that type of patient (the type whose drug use would concern her) and I realise that – as well as my GP being generally awesome - there's probably a large degree of privilege in coming across as sensible, responsible and self-aware enough to know if I was running into trouble.<br />
<br />
I'm also very conscious of my good fortune living in a wealthier part of the world, where seeing a doctor is free. My prescriptions have always either been completely free (they are currently) or have cost around £100 a year on a pre-paid card. I have never had to make decisions about drugs as a consumer. Nobody has ever tried to advertise prescription drugs to me.<br />
<br />
I'm aware that for friends in the US, anxiety over opioid addiction is making it very much more difficult for people to access appropriate pain control. As I understand it, a huge part of the problem there is around money; a minority of chronic pain patients sell prescription drugs on because being sick there is extraordinarily expensive. Some patients move onto heroin (entirely unregulated and unmonitored) because it is cheaper than getting a prescription. When both doctors and their prescriptions are expensive and patients are mistrusted, folks are forced to self-medicate. And if you can't afford regular daily painkillers – by far the best regime of managing chronic pain - it would be tempting to splash out on the occasional pain-free night when the cash is available. In such circumstances, even drugs of established provenance become extremely dangerous.<br />
<br />
The US saw <a href="https://www.statnews.com/2016/12/09/opoid-overdose-deaths-us/" target="_blank">50,000 opioid-related poisoning deaths</a> in 2015. The US population is only five times bigger than the UK, yet all our poisoning deaths, involving every kind of drug or substance, <a href="https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsrelatedtodrugpoisoninginenglandandwales/2015registrations#quality-and-methodology" target="_blank">totaled under 3700</a>.<br />
<br />
<b>The danger of a drug – any drug - is highly contextual</b>. <a href="https://www.addictioncenter.com/community/these-are-the-5-most-addictive-substances-on-earth/" target="_blank">Morphine is almost certainly less addictive than alcohol</a> and yet we still cling onto the (disputed) idea that a glass of wine every day might be good for you. There's also a huge difference between chemical and psychological addiction. I am chemically addicted to dihydrocodeine, another opioid – its sustained release, so there's no buzz to be had, I just get really sick if I miss a dose. However, if I didn't need it any more, I would cut down in increments and suffer minimally. People do that all the time. Many people take strong opioids after injury or surgery for a few weeks or months, but others come off these drugs after a period of years; my Granny has weaned herself from morphine twice in the last decade. My father-in-law went practically cold turkey from morphine following an operation to fix his back.<br />
<br />
<b>Psychological addiction is an illness in its own right</b>. It doesn't start with a drug so much as the problems a person has which the drug (or gambling, shopping or any other compelling behaviour) allows some temporary escape from. Drugs, their effects and the cost of acquisition then play a role, escalating a significant problem to a cataclysmic problem as money, work, health and relationships fall under. Sudden withdrawal from opioids is horrible, and with emotional distress in the mix I have great sympathy for folk who feel utterly desperate.<br />
<br />
Having chronic pain doesn't magically protect a person from emotional pain or psychological addiction stemming from it. But this risk is not mitigated by suspicion and restriction of essential pain meds. <b>The thing that makes my drug use particularly safe is my trust relationship with my doctors; I trust them and I feel trusted</b>. If something did go wrong, I would be in the best possible position for getting appropriate help. I know way too many people who are not so fortunate.<br />
<br />
<br />
<b><br /></b>
<b>6. The physical/ psychological false dichotomy</b><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6_nE-jVkoccB_JhyWlK_UbcHRckU6RqWbjleJgwwom7i63YV16HtgEAJU1t69qlhK5-PMYIEXSX3PVgUKqZEZEi_3YIER2vBaOq176A17PyT6nhT6EEqy3i5u02bpykbt3tsi/s1600/yawning.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6_nE-jVkoccB_JhyWlK_UbcHRckU6RqWbjleJgwwom7i63YV16HtgEAJU1t69qlhK5-PMYIEXSX3PVgUKqZEZEi_3YIER2vBaOq176A17PyT6nhT6EEqy3i5u02bpykbt3tsi/s320/yawning.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yawn! (A yawning alpaca)</td></tr>
</tbody></table>
Most of us can deceive our brains at least a little bit about what's going on in our bodies. I think I'm more suggestible than most. I have this problem with empathy whereby I violently flinch and sometimes cry out when I witness realistic injuries on TV and in movies. If I watch or read something set in a cold climate, I start shivering and if conversation should turn to the subject of fleas, headlice or similar, I'm going to have to sit on my hands. Oddly enough, I do not catch yawning off other people despite living with fatigue. I think my yawn mechanism is broken, but I still have the power to make others yawn by talking or writing about it. Open wide!<br />
<br />
All this stuff doesn't mean that hunger, extremes of hot and cold, fatigue, itchiness, pain and the rest is all in our imagination, or that feeling any of these discomforts, we can trick our brains into imagining our bodies are comfortable. <b>Discomfort indicates a problem, and evolution has rendered us incapable of ignoring it altogether.</b> But psychology is a really useful tool in chronic pain management. Anything which can help distract from the pain, make the pain less frightening, less mysterious, or feel less like a punishment or a betrayal will make pain less painful and make us more capable of looking after ourselves.<br />
<br />
Unfortunately, many people with chronic pain have very good reasons to feel terrifically defensive about psychological influences on pain. The gentle tool of psychology has been broken in two, with one end carved into a very sharp point and nails hammered into the other.<br />
<br />
Most pain has a physical origin. It is possible for emotional distress to manifest in physical pain and of course, emotional distress often triggers bodily events (raised blood pressure in the head, muscle tension in the neck, reduced blood flow to the digestive system etc.) which can result in or contribute to pain. However, psychosomatic pain occurs only in people in considerable emotional distress and even when they know that's the nature of their pain, it cannot be reasoned away.<br />
<b><br /></b>
<b>Unfortunately, we live in a culture which persists with this dichtomy between ill health or injury which is physical, real and therefore legitimate and health problems which are psychological, imaginary and therefore basically non-existent.</b> These ideas are not restricted to the pub loud-mouth; this dichotomy is highly profitable. Insurance companies, government agencies and the companies they employ are heavily invested in a bastardised <a href="https://en.wikipedia.org/wiki/Biopsychosocial_model" target="_blank">biopsychosocial model</a><br />
of all impairment which uses mental health stigma to allow discrimination against as many disabled people as they can possibly cast some doubt upon.<br />
<br />
Many friends with chronic pain and other physically-manifesting symptoms have had doctors struggle to find a physical cause, only to hold up their hands and say, “Well, it must be all in your head, nothing I can do. Just go away, get over it and get on with your life.”<br />
<br />
Gratefully, this stuff is much less common these days – I get the impression the generation of doctors who just couldn't cope with someone whose condition was not easily identified and swiftly cured are fast fading away. But what these folk experienced wasn't misdiagnosis – it was dismissal. They were rarely sent to any kind of mental health professional, despite their dramatic and (in psychiatric terms) atypical symptoms.<br />
<br />
What happens more often today is a little more subtle. My father-in-law was sent to a back pain support group before he had even received a diagnosis for his by-then chronic problem. This was – as was agreed among everyone present, some of whom were unable to stand up straight or walk – a holding pattern, a humiliatingly pointless exercise to slow down the flow of traffic to the various clinics these people needed to attend. Some folk would almost certainly drop out at this point – their condition might improve on its own or they might spend the rest of their life in unnecessary mysterious pain – but at least that would be a few off the waiting lists.<br />
<br />
The idea of an NHS-run chronic pain support group is great, but not before an attempt at diagnosis. I know others who have been sent to similar NHS-run support groups at the wrong time, when they've been seeking some other kind of help, and instead of thinking “Well, this group will help me gain knowledge and get perspective about my pain condition,” they have, quite reasonably, felt fobbed off, as if they were being asked to simply think positive thoughts to wish their pain away.<br />
<br />
<b>Even though we don't always understand what is happening to us, we are experts in our own experience. To feel doubted or dismissed about such a profound experience as chronic pain is deeply traumatic. </b>And if you begin to doubt your own chronic pain, therein lies a whole world of trouble; it is very much more difficult to look after your physical health, to not push yourself too hard, to medicate or sooth your body when things are bad. But most of all, of course, if you are conjuring up this kind of pain while feeling otherwise okay, what does that say about you? If you think you are in reasonable mental health, but are in fact in so much distress you are manifesting pain, how can you trust anything you think or feel?<br />
<br />
So when folk are defensive about the purely physical nature of their pain, this isn't pride, stubbornness or scientific ignorance – this stuff is borne out of trauma.<br />
<b><br /></b>
<b>And yet as I said before, all games of legitimacy are disablist games</b>. <b>The more we play into the idea of this fixed physical/ psychological binary, the more mental health stigma can be used to hurt everyone living with chronic subjective symptoms.</b><br />
<br />
This stuff also promotes a culture which makes it difficult for people with pain conditions to recognise and seek help for mental ill health, as well as denying us potential avenues of pain management. We need to be able to discover that fussing a dog, painting our nails or watching the falling blossom eases our pain without any sense that this throws the reality of our experience into doubt.<br />
<br />
<br />
<br />
<b><i>Image descriptions and credits:</i></b><br />
<b><i><br /></i></b>
The first image is the black and white Blogging Against Disablism Day logo. A banner across the top reads "Blogging Against Disablism" below which is a 5 x 4 grid. In each square is a stick person. The twenty stick people include one wheelchair-using stick person and one stick-person using a tool which might be interpreted as a white cane or walking cane.<br />
<br />
The second image is a cartoon pill pot containing green and white capsules which also appear to be tiny kittens. A label on the pot reads "If you can't make your won neurotransmitters, store-bought is fine." <br />
<br />
This image is entilted "Purrozac", is the work of Megan Fabbri and was originally found on <a href="http://let-there-be-color.tumblr.com/post/159492113033/medication-is-often-stigmatized-and-that-really">her tumblr</a>. Apparently you can buy items of apparel and accessories with this image on via <a href="https://www.redbubble.com/people/knifeears/works/26048414-perscription-help?asc=u&SSAID=389818&utm_source=shareasale&utm_medium=affiliates&utm_campaign=banner">Redbubble</a><br />
<br />
<br />
The third image is a photograph of a bright green sign with white writing on the mesh wall of what might be carpark. The sign features a stick person ascending the stairs above which reads "Burn calories, not electricity. Underheath the illustration it reads, "Take the stairs!" and in much smaller writing, "Walking up the stairs just two minutes a day helps prevent weight gain. It also helps the environment."<br />
<br />
This photograph was taken by Ludovic Bertron, was found on <a href="https://commons.wikimedia.org/wiki/File:Take_the_stairs!_(3476080117).jpg" target="_blank">Wikimedia</a> and is used under a <a href="https://creativecommons.org/licenses/by/2.0/deed.en" target="_blank">Creative Commons license</a>.<br />
<br />
The forth image is a photograph portrait of a creamy-coloured alpaca, who is yawning and showing its impressive teeth. The background is rather blurred but suggests a field on a sunny day.<br />
<br />
This photoraph was taking by Rob Faulkner, was found on <a href="https://www.flickr.com/photos/robef/5688248840" target="_blank">Flickr</a> and is used under a <a href="https://creativecommons.org/licenses/by/2.0/deed.en" target="_blank">Creative Commons license</a>.<br />
<div>
<br /></div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com0tag:blogger.com,1999:blog-10557263.post-1278410072668547182017-04-14T15:53:00.004+01:002017-04-14T15:53:58.322+01:00Blogging Against Disablism Day 2017 will be Monday, 1st May 2017<a href="http://tinyurl.com/BADD2017" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Blogging Against Disablism Day, May 1st 2017" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlG7-IWPr3hTnOQRB2JGxQEMcAR_-gcvKeTsVg66maM-aWdNlvZHwzE0wy3gZEWpA-4tRiHo0I63s706PAhbYLzsbsxPq-jbK47kDJlAgI0WfPFpuISLDGcc5iju9JPbclNl0y/s320/bad01.gif" title="Blogging Against Disablism Day, May 1st 2017" /></a>As with last year, I've given BADD2017 its own page, so please <a href="http://tinyurl.com/BADD2017">click here to read all about Blogging Against Disablism Day 2017.</a>The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com0tag:blogger.com,1999:blog-10557263.post-32550053767436070362017-03-22T16:07:00.000+00:002017-03-22T16:08:09.880+00:00The myth of prejudice, fear and ignorance.<i>Audio for this blog post is here:<audio controls=""> <br>
<source src="https://archive.org/download/themythofprejudice/themythofprejudicefearandignorance.mp3"></source>
If you cannot see the audio controls, your browser does not support the audio element
</audio><br />
</i>
<br />
<div class="western" style="margin-bottom: 0cm;">
<br />
<br />
I grew up with the idea
that at the origin of all prejudice was ignorance and the fear of
difference. Something like,</div>
<div class="western" style="margin-bottom: 0cm; text-align: center;">
<i><br />
</i></div>
<div class="western" style="margin-bottom: 0cm; text-align: center;">
<i>Those people look
different, they act different, I don't understand them and so I am
afraid!</i></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It is natural to fear
strangers, people would say, but as civilised educated people who
know we have nothing to fear, we overcome it. People who fail at this
and hate people who don't look, dress or behave like themselves are
simply ignorant and more easily afraid.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I had some doubts about
this even as a child because as a British white non-disabled child, I
was not in the slightest bit afraid of people of colour, people with
foreign accents or disabled people. I met people at school – a
family of Bangladeshi sisters with albinism, a teacher with cerebral
palsy - who looked, dressed, walked and/ or talked very differently from
anyone I had ever seen before, even on television or in books. I
didn't feel afraid of them in any way. Nobody did.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Meanwhile, the children
I saw picking on their black, Asian, fat, skinny or bespectacled
classmates did not seem to be afraid, they did not lack information
about the children they bullied, nor had they missed out on any of
the lessons about tolerance than I had received.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And yet the idea that
prejudice was a natural impulse we must learn to overcome held a
rather romantic message; for example, as a white person who felt no
animosity towards non-white people, I must be a particularly good
person. I watched movies where characters who looked a bit like me –
although admittedly usually men – were able to rescue groups of
black, Asian, Native American or Jewish people from their white or
gentile oppressors, occasionally even from one another. In such
stories, the villains usually looked a little like me, but the heroes
looked and thought like me. These days, there are even versions of
this movie, such as Avatar, John Carter and Game of Thrones, where a
white hero saves an entirely fictional, fantastic non-white people
because this is the way it works.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The idea of a world
divided into the good guys, the bad guys, and the helplessly
haplessly oppressed in need of my rescue appealed to my childish
mind. It was an idea that gave me power.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Every now and again, a
disabled friend will be shouted at in the street. Very often (although not
always) the assailant is drunk in the middle of the day. Usually, the
words shouted are about benefits, accusing the disabled person of
being a scrounger, lazy, faking or some variation on this theme.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The victim will post
about this experience on Twitter or Facebook. Folks are entirely
sympathetic, but there are almost always comments along these lines:</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
“People just don't
understand.”</div>
<div class="western" style="margin-bottom: 0cm;">
“People believe
everything they read in the papers.”</div>
<div class="western" style="margin-bottom: 0cm;">
“People need to be
educated about invisible disabilities.”<br />
"People are afraid of what they don't understand."</div>
<div class="western" style="margin-bottom: 0cm;">
“People need to spend
a day in a wheelchair and see what it feels like.”</div>
<div class="western" style="margin-bottom: 0cm;">
“People fear us
because disability reminds them of their own mortality.”
(Really.)</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Street harassment of
disabled people <a href="http://www.independent.co.uk/news/uk/politics/disability-hate-crime-convictions-surge-by-40-per-cent-a7232576.html" target="_blank">has risen steeply</a> in the UK since the Welfare Reform Act of 2011.
<a href="https://www.theguardian.com/society/2012/aug/14/disability-hate-crime-benefit-scrounger-abuse?newsfeed=true" target="_blank">Political rhetoric</a> sought to justify removing benefits from thousands
of people with the idea that a whole load of people were either
pretending to be disabled or at least exaggerating their conditions
for cash. Hate crime and political rhetoric are undeniably connected.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But this is not because
a bully on the street has come to the
conclusion that the next person he sees in a wheelchair almost
certainly doesn't need it. Nor does a bully look at a passing wheelchair user and feel a cool
chill of existential angst as he realises that one day his own beleaguered body will fail and die.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
A bully sees a disabled
person and he sees a mark. He sees someone who appears physically
vulnerable and socially isolated (folk rarely have these experiences
in company). All that crap in the papers about scroungers doesn't
give this guy a motive to abuse us; it gives him permission. People
who shout at us in the street almost certainly have a lot of fear in
their lives. But they don't need to be shown stats about benefit
fraud. Their fear has nothing to do with us.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
In the aftermath of <a href="http://blobolobolob.blogspot.co.uk/2016/06/the-eu-referendum-hope-despair.html" target="_blank">the EU referendum</a>, there was a massive increase in <a href="https://www.theguardian.com/politics/2016/oct/13/hate-crimes-eu-referendum-home-office-figures-confirm" target="_blank">racist</a> and <a href="https://www.theguardian.com/society/2016/oct/08/homophobic-attacks-double-after-brexit-vote" target="_blank">homophobic</a>
hate crime in the UK. Nobody became<i> more ignorant</i> and these crimes were not being carried out by people - like EU migrants resident in the UK - who suddenly had something to fear. As a Brit, one of the most painful aspects of
the unfortunate US election result was knowing that the same and
worse was about to happen over there. Not that the election result
made people more racist or homophobic (and the rest), but it made them believe that prejudiced sentiments were more socially acceptable to
express in public. <a href="https://undark.org/article/trump-social-psychology-prejudice-unleashed/" target="_blank">This perception literally shifted over night</a>.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is because
prejudice is primarily about power.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
We have a limited
capacity to know and understand all those who are different from us
but such knowledge and understanding are not necessary for respect
and compassion. We know that all other people are as human as we are,
that they have their strengths and weakness, loves and hates, fears
and their desires and that members of any given group – even one
brought together by a shared political belief – are not all the
same. We know this but applying this at all times is a challenge.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Complaints about “people who...” do annoying, hypocritical or awkward things are
common conversational currency – folk unite against a common
outsider, however superficially they are defined. I enjoy the BBC TV
show <a href="https://en.wikipedia.org/wiki/Room_101_(TV_series)" target="_blank">Room 101</a> where celebrity guests talk about their pet hates
(rather reduced from Orwell's original), which are very often “people
who...”. It's fun and funny because it is playing with this power;
part of the joke is to ridicule a certain kind of person but the
other part of the joke is the righteous indignation of the celebrity
guest about a rather petty subject. It is a safe way for someone to
say to a crowd, “Let's wipe people who eat noisily in the cinema
from the face of the Earth!” and for that crowd to cheer their
assent, united in their faux-loathing. And anyone present who knows that they eat noisily in the
cinema can laugh along (or rustle their toffee-wrappers) and has
absolutely nothing to fear.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Only usually, we're not joking. Sometimes we're half-joking, but
other times we enjoy our righteous indignation with a totally
straight face. Sometimes we complain about people who
have done or do something wrong - rude, hurtful or harmful - but very often not.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
When I first heard
discussions about people wearing pyjamas at the supermarket, even I
had a taste of smugness about the whole thing. Most days I struggle
to get dressed, but only a medical emergency would draw me out of my home in my pyjamas. And thus I had a moment where I enjoyed a
warm glow of superiority over people who shop in their sleepwear. Am I offended by this behaviour? Not one iota, but it made me feel good to
think that I have risen above those uncouth wastrels by rarely
ever leaving the house.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Now that's an ugly
confession. We're not supposed to show our pleasure in feeling
superior to other people – we're not supposed to admit to a
world-view where some people are better than others. So instead we
pretend to ourselves and others that we have other motives. It's a scandal!
It's very disrespectful! And then we can build on this using our rich
arsenal of cultural prejudices.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Okay, so many of the
discussions about pyjamas in supermarkets had some humour mixed in,
but not nearly enough. Very quickly you could see and hear folk
reaching for sexism (this is about women shopping in their pyjamas,
women breaking the rules!), fatphobia (these are probably fat and
lazy women!), sexism against mothers in particular (these women set a
dreadful example to their children!) and social class (these fat crap
mothers are undoubtedly chav scum!).
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
When this January, one
Tesco shopper published a picture of two women wearing sleepwear in a
store on the Tesco Facebook page, the subjects of that photograph
later said they felt they had been targeted as travellers. That's
very likely the case; prejudice against travellers is rife and it
would have provided yet another reason for some twerp to feel
superior to them.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
None of this is about the question of whether wearing sleepwear in a supermarket is
disrespectful to the people who work there – a question worth
asking, but hardly worthy of national debate. This is about taking
pleasure in passing judgement on folk who are seen to have
transgressed.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
So
let's imagine if Philip Hammond, our Chancellor of the Exchequer, was
seen shopping in the supermarket in his pyjamas. We could criticise
his arrogance, but we'd struggle to find much to say besides that.
Being very powerful and a millionaire doesn't mean (I hope) that you
or I could not consider ourselves Hammond's moral superior, we just
don't have the language to back that up. We don't have the language
to bring a rich straight cisgender gentile non-disabled white man
down without casting aspersions on one of those identities. This is
why even someone who is as morally repugnant and personally tragic as
Donald Trump is mocked as having <a href="http://time.com/4539487/donald-trump-small-hands/" target="_blank">small hands</a> or <a href="https://theestablishment.co/those-trump-statues-arent-funny-and-they-sure-aren-t-progressive-e21206131624#.3dqns54g1" target="_blank">a small penis</a> (not
manly), <a href="http://www.gq-magazine.co.uk/article/lgbt-community" target="_blank">drawn kissing Putin</a> (not straight) or<a href="http://www.nbcnews.com/health/health-news/donald-trump-isn-t-mentally-ill-he-s-just-unpleasant-n721766" target="_blank"> described as mentally ill</a> (not non-disabled).</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The
pyjamas thing may seem like a trivial example, but when the
aforementioned Tesco shopper posted that picture of two traveller
women wearing sleepwear in a store on the Tesco Facebook page, he
asked the supermarket to stop serving “such people”, adding that,
“It's bloody disgusting!”</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
By which he meant, “I
feel so superior to these people that I think I might single-handedly
stop them being able to use a supermarket at all. It's bloody
amazing!”
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But that doesn't mean
he wasn't genuinely angry about it. The anger that accompanies
righteous indignation is absolutely real. I'm sure this chap felt
that he was trying to correct some great wrong in the world and that
his actions were public-spirited. He's probably a perfectly nice
bloke the rest of the time and may well regret a deed which took just
a few moments of excitement.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is a big problem.
We would like people to be on one side of this or the other; good
guys and bad guys. Not just because it's simple, but because you and I can be on the right side. As I say, it's a romantic idea, and I believe it is more romantic the more detached you are from the realities of prejudice (which, as a young non-disabled girl who imagined she could grow up to be Indiana Jones, I once was).</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
We are very social
animals and we are constantly concerned with our place around other
people. We all have access to a variety of strategies for interacting
successfully with other human beings, including very nice things -
like sharing our resources, making ourselves useful, making others
feel good – then mutual self-interest and the exertion of power;
deceiving folk, threatening folk, undermining folk etc.. There
are also strategies we employ not as individuals, but as groups.
Groups of people bond over common causes and goals, shared
experiences, shared jokes, but also belittling, hating and fearing outsiders. Human beings are so very social that we far
surpass all other animals in our capacity for destruction and
cruelty - but only when our friends are looking on.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Like other primates and
many other mammals, we have access to all these strategies, and –
when successful, however fleetingly – all of these things feel
good. Obviously not all of us use all of them. We make choices based
not only on what we've got (if you're very small, physical
intimidation may not be your thing), but also on what makes us feel
comfortable and good about ourselves.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But just as almost
everybody will have felt a violent impulse from time to time, almost
all of us have it in us to wish to exert power over others. And when
we do so – especially when we're angry or insecure (because fear
does play a role in this), it is easy to slip into the patterns our
culture has dictated. On the rare occasion I feel a real loathing for
someone, I find myself thinking of really insulting and often amusing
ways to describe their physical appearance. This despite the fact
about half of everything I've ever written might be vaguely
summarised as “Don't judge people by their appearance.”
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<a href="https://debuk.wordpress.com/2017/03/04/pride-prejudice-and-pedantry/" target="_blank">Debbie Cameron wrote recently</a> about the tendency for egalitarian folk to pull apart the
grammar and spelling of bigots. I understand and share this impulse;
it's funny and satisfying, but it reinforces some of the very
cultural hierarchies we are attempting to dismantle. There's a lot of
this sort of thing within egalitarian politics, where folks who wish
to end prejudice of all kinds nevertheless employ prejudicial
language (most often disablist slurs) to insult
their political enemies.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is a point we keep
missing again and again. I think folk are afraid of this truth partly
because it is unflattering to almost all of us. But mainly, I
think, because it makes bigoted behaviour even scarier when you
understand that folk take pleasure in placing others as inferior;
people and groups enjoy feeling powerful. People and groups enjoy
exerting power.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
There are other things I want to write about power and prejudice, but I will conclude this post with a very positive example of how this stuff can get better.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Among straight people
in my social circle, the short ten years between Civil Partnership and same sex marriage revolutionised attitudes towards LGBTQ+ people
(even though <a href="http://www.newstatesman.com/politics/2014/04/we-wont-have-truly-equal-marriage-until-we-get-rid-spousal-veto" target="_blank">trans* people cannot be said to have full marriage equality</a> even now). A wedding is an occasion of collective joy,
usually involving many more people that just the brides and grooms. It is a really big deal to refuse a wedding
invitation, whether it is for your only son, an old college friend or
your great-niece twice removed – people notice, people know about
it, people wonder how anyone can be so pig-headed. It is a really big
deal to put a dampener on a wedding – not just for the couple but
for any member of a wedding party – by making foul jokes about it
or insisting it shouldn't be allowed. Even if you are so far removed
from things that it's just your colleague that's the
mother-of-a-bride, you are socially obliged to smile and coo at her
new hat, and afterwards look at the photos and agree that the couple
look incredibly beautiful and happy. Anything else is a potential
bridge-burner.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Marriage was not a
priority for all LGBTQ+ people – some folk object to the whole
institution - but it caused the ground to shift. Straight
people got to truly celebrate same-sex relationships, to take them
seriously (no more of this “Johnny's special friend” to mean
Johnny's spouse), to associate these relationships with the formation
of family and the consumption of cake, while homophobes increasingly looked
like killjoys and bigots. This did not happen overnight and it was
not magic – we've not nearly begun to see the end of homophobia, transphobia and the rest.
But I've had conversations with folk since 2014 which would have been
inconceivable in 2004 and vice versa, because queer people started getting married. </div>
<br />
<div class="western" style="margin-bottom: 0cm;">
This happened not
merely because people's minds were changed by reasonable argument
(although that's part of this), but because of both positive
and negative social pressure; it's nice to be participate in other people's good news, fewer people were going to laugh at
those jokes or nod sagely at those bigoted remarks and more
people were prepared to object. All this can work, not just to silence increasingly unpopular views, but to change people's minds, to knock the wind out of the sails of their prejudice and bring them around.<br />
<br />
People will hold onto prejudice when it gives them power. Remove that power, all of it, and folks do let go. </div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com0tag:blogger.com,1999:blog-10557263.post-53313111823396658512016-12-24T10:14:00.004+00:002016-12-24T10:14:56.596+00:00Thirty SixToday is my thirty sixth birthday.<br />
<br />
A chaotic December meant I didn't do this last year, but I thought I should try to review this year, particularly as it featured such big chunks where I've been decidedly unwell, and there were so many things I wanted to do, had agreed to do or half-started that I then had to give up because of my deteriorating health. Before I started writing things down, it felt like there would be very little to say, but I did really quite a lot in the spring and haven't been completely idle since. This is going to read like a dreadful bragging Christmas Letter, but it's my birthday and this is mostly for my own sake.<br />
<ul>
<li>I had started doing a bit of editing for the F-Word towards the end of last year, but I think it was at the beginning of this year that I officially became Features Editor. Then my health deteriorated and I had to give it up this summer, but it was a very interesting and satisfying experience - I had previously enjoyed the mechanics of editing other people's work, but the best bit was facilitating others to say what they wanted to say to a significant audience. </li>
</ul>
<ul>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiZPx5hKptW71YoIukEDK6vzOsOlR2uexeHNndQnoy3PYKyIe5WyqDbXOC7YTi3zM6FjrhvKW8bZWvSOq1WUrlktPh8AZhWI-8MjJIc4Cr7SP2TiGLMcJFYGa7R5ieJ6NXRPYO/s1600/IMG_3048+%25281%2529.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiZPx5hKptW71YoIukEDK6vzOsOlR2uexeHNndQnoy3PYKyIe5WyqDbXOC7YTi3zM6FjrhvKW8bZWvSOq1WUrlktPh8AZhWI-8MjJIc4Cr7SP2TiGLMcJFYGa7R5ieJ6NXRPYO/s320/IMG_3048+%25281%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I model a winter lettuce - a woman with a lot of hair holds <br />a lovely green lettuce as big as her head.</td></tr>
</tbody></table>
<li>Early on in the year, I planted a load of vegetables. As the spring progressed into summer, my health meant things got a bit out of control, but those things that weren't killed off by neglect included tomatoes, lettuces, a small amount of pak choi (the caterpillars do love the stuff), radishes, baby sweetcorn (that was particularly good), peas, strawberries, French beans and runner beans. Oh and potatoes - lots of potatoes grown in sacks. I now have two table-height vegetable patches in the garden so I don't have to bend down.</li>
</ul>
<ul>
<li>I had written <a href="http://thefuturescentre.org/articles/6794/worlds-opportunity-beyond-he-and-she" target="_blank">this article</a> last December but it was published this year and I'm very proud of it.</li>
</ul>
<ul>
<li>We looked after a lovely old border collie for about a month, which was rather nice.</li>
</ul>
<ul>
<li>I have had a lump in my armpit for the past six months. After the first two, it triggered <i>NHS Lump Panic</i>, eight individual strangers got to see my naked breasts in one afternoon but it was all fine. All this happened at a time when I could really have done with a break, but the care I received at the Breast Clinic was extremely good. Do get your lumps checked out.</li>
</ul>
<ul><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-j0oM-q7nmM_BB7BNg8Ce_1qPuvjjSJmWXJlsRtSsOL1rbeNElPiU1S-J5I8P7U2x8gsgM6S6sxFGC-F57K26w54xXSeSLO6qlaO1cNpDYl1ltQG6c9rE9y57H5r8JIy9CMDV/s1600/IMG_20160818_194014.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-j0oM-q7nmM_BB7BNg8Ce_1qPuvjjSJmWXJlsRtSsOL1rbeNElPiU1S-J5I8P7U2x8gsgM6S6sxFGC-F57K26w54xXSeSLO6qlaO1cNpDYl1ltQG6c9rE9y57H5r8JIy9CMDV/s320/IMG_20160818_194014.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I model the mermaid's tail - an enormous<br />mermaid reclines in a wicker chair with a<br />somewhat seasick expression on her face.</td></tr>
</tbody></table>
<li>I made a mermaid's tail sleeping bag for my niece. I scrapped an earlier attempt because it was a bit too small - at least, a four year old would grow out of it in no time. The finished version should serve her well if she is still interested in being a mermaid into middle age.</li>
</ul>
<ul>
<li>I wrote <a href="https://www.thefword.org.uk/author/d-h-kelly/" target="_blank">quite a few</a> blog posts and a couple of features for the F Word in the first half of the year. My <a href="https://www.thefword.org.uk/2016/07/unsexy-women-love-sex-and-marginalised-bodies/" target="_blank">favourite is this</a> about women who, by virtue of being disabled, old, fat etc. are considered sexually and romantically unattractive by our culture.</li>
</ul>
<ul>
<li>I drove a car! I have had a provisional license for a few years, but this year, on one occasion, I actually drove. It was awesome!</li>
</ul>
<ul>
<li>It was the twentieth anniversary of my becoming sick in August, so I wrote a series of posts about chronic illness and coming to terms with loss. As, if you're reading this, you are almost certainly aware.</li>
</ul>
<ul>
<li>I have been writing and editing fiction. Just not nearly as often or as enough as I would like.</li>
</ul>
<ul>
<li>In the midst of everything, they happened to discover that I was very deficient in Vitamin D. I've now got an evangelical zeal about telling folks who also might not get out much that they should get their Vitamin D checked. However, I am too polite to give unsolicited health advice, so this may be the only time I ever mention it. </li>
</ul>
<ul>
<li><a href="https://www.amazon.co.uk/d/Books/Purple-Prose-Bisexuality-Britain-Kate-Harrad/0996460160/ref=sr_1_1?ie=UTF8&qid=1482490103&sr=8-1&keywords=purple+prose" target="_blank">Purple Prose</a>, a book about being bisexual in the UK was published. It includes some of my words as well as the words of far more interesting and brilliant people.</li>
</ul>
<ul>
<li>My Dad retired, which has been absolutely great. His work was stressful and now he is not only very much more relaxed, but we see a lot more of him and have had some modest adventures together.</li>
</ul>
<ul>
<li>I had lessons in the Alexander Technique to improve my posture, which is something I have fancied doing for years. Of course it hasn't fixed anything, but it has dramatically reduced certain kinds of pain in my back.</li>
</ul>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkZQKukvYWxIWnaB3wwU0BGwNdx6qXDp5FQN8G0XFiIQjY_iEIcIYwAiQOipZfJw3fYFtk4nbjkDseY5LEDI6A9sKszLJXgfB5QY7NSMSkhJ0uHvj1AeN3krGZw1Edg6NETC7G/s1600/13913754_1731090127149047_2950944885535593049_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkZQKukvYWxIWnaB3wwU0BGwNdx6qXDp5FQN8G0XFiIQjY_iEIcIYwAiQOipZfJw3fYFtk4nbjkDseY5LEDI6A9sKszLJXgfB5QY7NSMSkhJ0uHvj1AeN3krGZw1Edg6NETC7G/s320/13913754_1731090127149047_2950944885535593049_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuffles the hedgehog - a fluffy brown hedgehog eats from<br />a dish of mealworms. She was one ill-tempered hedgehog.</td></tr>
</tbody></table>
<ul>
<li>We installed a camera to watch the garden after we'd gone to sleep, to monitor the full extent of hedgehog activity. We saw a lot of hedgehogs and one night, a tawny owl landed in the garden and sat down with one of the hedgehogs to have a meal.</li>
</ul>
<ul>
<li>Stephen acquired a tabletop game called Zombicide, where you go round killing zombies with dice rolls. This turned out to be tremendous fun and we have spent several happy evenings liberating prison blocks from the zombie hoards. </li>
</ul>
<ul>
<li>We saw a little more of our nephew and niece this year and had some really good times with them. They are both fantastic children and so much fun to be around. </li>
</ul>
<div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE-kr_Y__CF8BE8-otfsMsabmseTCh8S0bwZI0V1dRelnbZWEf6ACVGRiXeBprQCtWGqovWLVDcy5fRiCKIGxUtsaGtuKVxRkFtOcJm-rr6coBkuZsAWQwBoiIhzG5Ji9CNEEm/s1600/P1000493.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhE-kr_Y__CF8BE8-otfsMsabmseTCh8S0bwZI0V1dRelnbZWEf6ACVGRiXeBprQCtWGqovWLVDcy5fRiCKIGxUtsaGtuKVxRkFtOcJm-rr6coBkuZsAWQwBoiIhzG5Ji9CNEEm/s320/P1000493.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A young blackbird - a brown bird with pronounced beak and<br />speckled breast, sitting in a bush with white flowers.</td></tr>
</tbody></table>
<ul>
<li>We think at least one hedgehog was born in the garden this year, as were some sparrows and a blackbird (left). This chap startled me when I was trying to see if he was still in the nest.</li>
</ul>
</div>
<ul>
<li>Politics has been pretty grim. The world's progress towards being a more peaceful, freer, happier, healthier place - <a href="https://ourworldindata.org/a-history-of-global-living-conditions-in-5-charts/" target="_blank">which has been considerable, even in very recent times</a> - is in grave danger of stalling. A very great number of good folk have brought that progress about through hard work and I hope, a similar effort by very many people in both big and small ways will get us back on track. That may sound a bit crass amid all this light personal news, but like a lot of people, politics has been deeply personal this year.</li>
</ul>
<ul>
<li>We managed to get to the theatre for the first time in a few years to see the Cambridge Greek Play do Antigone and Lysistrata. The latter was particularly brilliant, satirising the ongoing political nonsense and with songs in Ancient Greek we were all invited to sing along with. </li>
</ul>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcpiN2sDTZzZyVV8YqoUZJXDM_C-E9-cllbW237JOeFiYS1w23Fo7AOpI6fTCnsEM_Ph0qHKPYrrKmugdPCzH45MU5WoWrZ96a5vWXNW2bkWAyeYLBX7RItaGCGLR3aihj83vi/s1600/13613578_1725887454335981_2058928798872840530_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcpiN2sDTZzZyVV8YqoUZJXDM_C-E9-cllbW237JOeFiYS1w23Fo7AOpI6fTCnsEM_Ph0qHKPYrrKmugdPCzH45MU5WoWrZ96a5vWXNW2bkWAyeYLBX7RItaGCGLR3aihj83vi/s320/13613578_1725887454335981_2058928798872840530_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two happy people at a picnic bench <br />with a field in the background.</td></tr>
</tbody></table>
<ul>
<li>As everyone knows, Stephen is an amazing person, but he has been particularly heroic this year. We've always <a href="http://blobolobolob.blogspot.co.uk/2012/06/care-and-teamwork-ramble.html" target="_blank">performed care for one anothe</a>r in ways which merge with everyday kindnesses and physical expressions of affection, but this year the work of keeping us going has shifted very heavily onto his shoulders. While it has been tough, we have not only survived, but we've often had a great deal of fun.</li>
</ul>
<ul>
<li>It's been a very difficult year for several of our friends and family; other people have had major health crises, bereavement and money worries, as well as the personal effects of the year's disastrous political events. Thus I come to the end of 2016 with a heart full of love and hope that next year is much much better and brighter for those who have had to battle through to this point.</li>
</ul>
<div>
I hope that anyone who actually read down this far has a wonderful, peaceful holiday season whatever you're doing with it and a very happy New Year.</div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com2tag:blogger.com,1999:blog-10557263.post-10711547396376183532016-12-16T10:08:00.001+00:002016-12-16T10:31:13.511+00:00On Loss & Chronic Illness - Acceptance<i>[Content note: This post has a lot about status-anxiety and thus issues of self-esteem and the judgement of others. Passing reference to diet talk.]</i><br />
<i><br /></i>
<i>I managed to do the audio for this but it's not brilliant:<audio controls="">
<source src="https://archive.org/download/acceptance_201612/acceptance.mp3"></source>
If you cannot see the audio controls, your browser does not support the audio element
</audio><br />
</i>
<br />
<div class="western" style="margin-bottom: 0cm;">
<br />
As I've mentioned in
previous posts, the Kubler-Ross stages of grief are not about a fixed
and inevitable sequence. They are merely common experiences which are
likely to happen in this approximate order following loss. However,
with chronic illness as with other dramatic and complicated losses,
we are very likely to revisit earlier stages.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is the bad news
about acceptance; the first time we feel that we've accepted our loss
is undoubtedly a breakthrough, but this is very unlikely to be
something that happens once and forever. This is partly why I've been
writing about loss and chronic illness a full twenty years since I
first got sick. I have absolutely come to terms with what happened
back then. I sometimes have to come to terms with what is happening
now.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Our dominant triumph over adversity narrative means that those stories about chronic
illness which aren't about the search for a cure or heroically
<a href="http://blobolobolob.blogspot.com/2014/04/blogging-against-disablism-day-2014_30.html" target="_blank">raising <i>Awareness</i></a> are usually about spectacular reinvention: <i>Chronic
illness ended my career as a stock-broker but now I'm building a
million pound empire by hand-knitting mushroom-warmers.</i></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Reinvention is
inevitable but the creation of a new life which somehow mitigates all
the problems associated with chronic illness is unlikely. It's a very
rare chronic illness which doesn't fluctuate over time. Some are very
likely to deteriorate. Some have a good chance of improving to some
extent, which is not a straight-forward prospect either. Life
circumstances can and probably will change in a way that draws loss
back into focus.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It may be you find
peace, comfort and creative fulfilment in spending your days
hand-knitting mushroom-warmers. But this could happen without making
a penny and there's no realistic prospect of replacing a
stock-broker's income. It won't get you out of the house or provide
the interactions or social standing associated with your previous
work. Plus, despite the relative low pressure, knitting good-quality
items and selling such knitted items is neither effortless,
stress-free nor unaffected by fallow periods.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
By definition, chronic
illness can't be fixed. But having come to terms with that, it is
vitally important to recognise that the life-changing effects of
chronic illness cannot be magicked away either. My previous posts
have been about how our disablist culture makes it so much more
difficult to move through stages of grief when we become chronically
ill. This post is about making sure we don't replace all that with
some other equally futile struggle imposed by a culture that doesn't
want us to let go of this particular kind of loss.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
For the first ten or so
years of my illness, my energy was focussed on a sequence of rather
unhelpful questions:</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
How can I regain my
health?
</div>
<div class="western" style="margin-bottom: 0cm;">
If I can't regain my
health, how can I complete my formal education?
</div>
<div class="western" style="margin-bottom: 0cm;">
If I can't complete my
education, how can I make money when I'm too sick to work?
</div>
<div class="western" style="margin-bottom: 0cm;">
If I can't make money,
how can I stop other people thinking I'm a waste of space?
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Ultimately, for me, the
answer was the same in every case. At 35, I am in worse health than
in my late teens, I have just 3 GCSEs to my name and I've been
dependent on benefits my whole adult life. Various adventures in
higher education came to nothing. I am occasionally paid for my work
but could never do enough to regularly supplement my income, let
alone replace the state benefits I receive. We live in a culture
where a successful person is generally understood to be someone with
a well-paid fulfilling job. By that measure, I am a complete and
utter failure.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Of course, I am not and
nearly nobody thinks I am. But we do need to talk about status.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Small children are told
not to compare themselves with others, but then schools, advertising
and often even their parents will ask them to do just that. This only
increases as we get older, as we are sold the political myth of
meritocracy; the idea that how rich, successful, beautiful and
healthy people are is a reflection of their virtues and personal
efforts. Or perhaps worse; the idea that this should be the case and
if we're not as rich, successful, beautiful and healthy as we deserve
to be, then something has gone drastically wrong – either with
ourselves or with other people.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
People with chronic
illnesses don't live apart from our status-anxious society, and
circumstances – isolation, frustration, time on our hands – can
make status-anxiety even worse than for folks who are busy getting on
with other things. The whole game is rigged, but we have even less
opportunity than most to even take a punt.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Even folk who are able
to work with chronic illness are acutely aware of the scrounger
rhetoric which might be applied to anyone who is not functioning at a
hundred percent. We hear about the “hard working families” for
whom politicians claim to speak (so not us?), as well as receiving
the steady drip of advertising and aspirational TV where the most
valuable people are wealthy healthy consumers. Even cultural advice
around health is status-based; there's a reason New Age magazines
promote total silence (bad news for most human brains) as necessary
for “true rest”, why newspapers focus on exotically-grown produce
your gran never heard of as health-giving foods, when all their
nutrients can be found in cheap local veg and cereals. Health is
about status too and there's cultural capital to be gained in looking
after yourself expensively and elaborately.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Added to this are the
<a href="http://blobolobolob.blogspot.com/2007/03/tragedy-model-of-disability.html" target="_blank">dominant stories of tragedy</a> and triumph over adversity which are told
about people like us, the supercrip image of every disabled person we
see on TV who is neither a villain nor an object of pity. They are
geniuses with mental illness, they are blind pilots, they are
wheelchair-users who climb mountains. It's bad enough that we can't
possibly keep up with our peers, can't work as much as them, can't
earn as much, can't do as much in any regard and have far more
limited choices around family and relationships. If we start
comparing ourselves to the most visible disabled people within our
culture, we're in even more trouble.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Of course, we rarely
talk about this stuff explicitly; we don't acknowledge the race, so
it's hard to come to terms when you have well and truly fallen out of
it.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I've not entirely
sorted myself out with status. Working makes me feel good. But
interruptions to that are frustrating to me not only because I can't
do the thing I find uniquely enjoyable and fulfilling. Nor is it even
the lack of feedback, which matters too – few people write only for
the page. The less I write, the less I feel like a writer. The less
paid work I do (which isn't much at the best of times), the less I
feel like a writer. The more slowly I move towards getting a novel
published, the less I feel like a writer. And of course my identity
shouldn't hinge on being any one thing, but there's part of me that
feels that if I am not a writer, I am not anything; I am without
value. Which is nonsense and I know it.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I know other people who
are able to do even less of the things they are passionate about, or
people whose health is much better than mine who lack such a central
focus. I don't for a moment think less of them; I know I'm extremely
lucky that writing was always there. But this is the nature of
status-anxiety; we anticipate judgement in situations where we'd
never pass any ourselves. Just the other day, my Mum explained her
nervousness about a couple of upcoming social events, in terms of her
being “just a school secretary”. She explained that being in her
sixties and still working for the kind of pay that a school secretary
receives suggests someone who lacks the ambition, drive and
intelligence to get further and do something more impressive.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
So I said, “If you
imagine other people think that about you, what do you imagine people
think about me?”
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And of course, she
didn't imagine anyone would turn their nose up at me or any of her
friends or family members who are out of work, or who work as
cleaners or in supermarkets; she would be positively outraged at the
suggestion that any of us were in these positions because we lacked
ambition, drive or intelligence. We apply a different standard to
ourselves, but every time we vocalise this unexamined, we risk
raising the unrealistic standards of those around us.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
One of the biggest
problems is that disabled people are conditioned to explain ourselves
to others in much the same way we would explain ourselves to doctors
or the DWP; there's a reason <a href="http://blobolobolob.blogspot.com/2014/02/why-i-dont-answer-question.html" target="_blank">why we answer rude questions</a> when others
would not. I have heard friends explain their conditions and their
work/benefit status to strangers in all kinds of circumstances where
people didn't need to know about either.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Of course, people
respond to the information they're given. If you tell someone you're
a jet pilot, they will talk to you about planes and travel. If you
tell someone you have Lupus and haven't worked for five years, they
will come up with an anecdote about an uncle who had Lyme Disease (it
begins with L, after all), a deeply personal question about your
condition and a suggestion for work they imagine you might be able to
do because it doesn't involve a lot of standing up.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is bound to make
you feel fairly crap about yourself, and reinforces the idea that you
are set apart from other people, from some mythical normal world of
health and success.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I imagine this is made
even more difficult for firmly middle class sick people who don't
meet any of the millions of working people who readily avoid talking
about their jobs because they're either boring or unpleasant (some
wealthier people have rubbish jobs, but they're handsomely paid and
respected for the tedium). For perhaps the majority of working
people, even when it's reasonably enjoyable and fulfilling, work
doesn't reflect who a person is, but merely what they do on weekdays
to pay the bills.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It is not that people
with chronic illness should be ashamed of anything – our health,
our work status or anything else - but there's much to be gained from
presenting ourselves as who we really are, what we really do, rather
than starting all interactions with the excuse we have for not being
like other people.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
There's one of those
<a href="http://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much/transcript?language=en" target="_blank">inspiration porn</a> memes which features an amputee child running on a
race track with the slogan, “What's your excuse?”
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And of course it's
silly and offensive in ways that don't need to be covered here, but
there's a tiny part of me which responds, “I have an excuse. Do I
need to let anyone know about that?”
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Some people feel they
do. As mentioned in my <a href="http://blobolobolob.blogspot.com/2016/10/on-loss-chronic-illness-sadness.html" target="_blank">Sadness post</a>, I have come across folks who
perform the role cast to them as unfortunate ill person, motivated
in part by the mistaken belief that the bullying and skepticism
disabled people face is due to ignorance, and enough information can
put everything right. I'm not talking about folk who merely discuss
their health or even complain about it a lot, but the chronic illness
equivalent of those women who perform motherhood – not just talking
about or referring to the experience, but placing every topic of
conversation within that context, vocalising the most mundane aspects
of it, demonstrating how they're doing the right thing (often
elaborately and expensively) at all times. Either involves a lot of
generalisation; motherhood feels like this, life with chronic illness
feels like that. And while the performance of motherhood tends to
exude positivity – it's the toughest job in the world but the most
rewarding! – the performance of chronic illness is about suffering;
it's just the toughest damn job in the world.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It is an ongoing sick
note to the world and of course, that answers the issue of status: I
would be doing amazing things if I was not ill, but instead I'm doing
an amazing job of being ill, fighting it and documenting it to
inspire and <a href="http://blobolobolob.blogspot.com/2014/04/blogging-against-disablism-day-2014_30.html" target="_blank">inform others</a>. And this can be really difficult for the
rest of us to be around.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It contributes to a
culture where disabled people are defined by our impairments and
non-disabled people believe they have a right to expect a moving and
detailed account of our lives and suffering – non-disabled people
get to keep the power. Bullies get to keep on bullying.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Yet beyond this, even
though I am acutely conscious of these politics, when I meet with
such performances, I find myself doubting my own perspective on
illness. I've always managed to be reasonably upbeat but at this
point in my life, I find myself particularly blessed; I am married to
Stephen, I have some great friends, my family relationships are the
best they've ever been, I love my home which has a garden and the
garden has hedgehogs living in it. I have some big health-related
frustrations impact on my work – especially this year – and
upsets and worries occur from time to time, but otherwise, I'm really
enjoying my life.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Stephen has always
enjoyed the Eurovision Song Contest and because I'm so cool, the
first time I watched it with him, I kept thinking, “I can't be
enjoying it this much. Not really. There is nothing cool about this.
Maybe I am only enjoying it ironically?”
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And in the same way,
when confronted by people whose mission it is to let the world know,
in all their interactions, how an illness like the one I have has
ruined their lives, there's a part of me that thinks, “Maybe I'm
kidding myself? Maybe it is impossible to be as content as I think I
am?” After all, these folks have much of our culture on their side;
<a href="http://www.bbc.co.uk/news/magazine-27554754" target="_blank">we're not supposed to be happy</a>.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But louder than that,
there's a part of me which thinks, “Maybe other people think badly
of me, because I don't do this stuff. Maybe when I'm not around for a
while, people just think I don't care about them, that I'm busy with
other things. Maybe people look at how little I achieve and assume
I'm just lazy. Maybe people think I'm a scrounger. Maybe people think
I don't look after myself properly because I don't detail all the
boring ways I look after myself.”</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And of course, this is
why people do this stuff in the first place; this performance of
illness is, to some extent, what our culture expects of us. If I was
a character in a book or a film, the first thing you'd know about me
was my medical history; my character or people close to me would
discuss it at length. You would see me gritting my teeth in pain,
taking medicine, lying about looking unwell and so forth. You would
see this because my character would be all about pathos; my illness
would function as a reason to feel sorry for me and for those who
care for me.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
In the face of
oppressions, big and small, some folk imagine that sympathy will hold
back the dogs. In reality, there's no way round the fact that some
people will pass judgement on me given the society I live in. It's
very rare these days that anyone expresses anger towards me, but when
they do, they always manage some snide remark about my health or the
way I manage it. No amount of information is ever going to shut that
down.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Avoiding these kinds of
people and this kind of thinking is as essential to acceptance as
avoiding folks who constantly talk about how fat and hideous they are
and what diets they're on when you're trying to feel okay about the
size of your bum.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The question I should
have asked much sooner than I did was
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
How can I live the best
possible life I can within what limitations I have?</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Which sounds obvious
and easy enough, but is in fact a tremendously complex question. It
demands we look at what our actual limits are - and not in a
pseudo-existentialist, <i>the only limits are the ones we impose upon
ourselves</i> kind of way. Our health is not only a limitation, but
most likely a changing limitation. We all need some money so we need
to source this, whether through a new way of working, wrestling the
benefits system, relying on a working partner or finding some kindly
eccentric benefactor. We need food, clean clothes and to live in a
reasonably sanitary environment, so we need some way of making sure
that happens. If we are a parent or a carer, we need to make sure
that parenting or caring carries on. All these limitations are real,
often quite messy and prone to change even when our health doesn't.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And then there's the
matter of what is best. If there's any left after we have secured our
basic maintenance, what should we spend our time and energy on? The
thing that's most fun, the thing that's most fulfilling, the thing
that's most useful to the world or the thing which makes us most
comfortable materially?
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Of course, these are
not chronic illness questions, but being alive questions. Everyone
has limitations. Everyone. Some people undoubtedly have much easier
lives than you or I, but very many people who don't have chronic
illness nevertheless face a lot of limitations and complexities on
their particular journeys through life.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
There's a tendency for
people with chronic illness to feel set apart from some mythical well
world where everything is straight-forward and I understand that –
I have had conversations with friends and family where it's taken me
less time to say what I've been up to in a month than they take to
report on a single day.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
However, acceptance
means moving on from the sense that our little piece of the world has
stopped turning while everything else carries on like nothing's
happened, that sense that separates us from those with different
experiences. In the same way, when we finally come to terms with a
death, the imposing sense of that empty chair eases; the chair
remains empty, but it no longer dominates the room.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Again, this is
complicated by the fact that acceptance isn't a happy ending we
arrive at just once – with chronic illness, we are likely to
experience loss again, our world will once again stall on its
rotation. But having reached acceptance already, it gets easier to
ride out our inclination toward <a href="http://blobolobolob.blogspot.com/2016/01/on-loss-chronic-illness-denial.html" target="_blank">denial</a>, <a href="http://blobolobolob.blogspot.com/2016/03/on-loss-chronic-illness-anger.html" target="_blank">anger</a>, <a href="http://blobolobolob.blogspot.com/2016/05/on-loss-chronic-illness-bargaining.html" target="_blank">bargaining</a> and <a href="http://blobolobolob.blogspot.com/2016/10/on-loss-chronic-illness-sadness.html" target="_blank">sadness</a>
and get it turning once again.</div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com1tag:blogger.com,1999:blog-10557263.post-22796660060520728682016-10-12T10:41:00.000+01:002016-10-12T11:38:37.508+01:00On Loss & Chronic Illness - Sadness<i><b>Content Note: Discussion of depression, mention of suicidal thoughts.</b></i><br />
Mr Goldfish has provided audio for this post:<br />
<audio controls="">
<source src="https://archive.org/download/sadness_201610/sadness.mp3"></source>
If you cannot see the audio controls, your browser does not support the audio element
</audio><br />
<br />
<i>My general plan in
writing these blog posts was that I would conclude with </i>Acceptance<i> on 26th August, the 20th anniversary of my becoming ill. I
suppose it is fitting that the last several months have been pretty
rough and things didn't go according to plan. </i><br />
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The forth stage in the
Kubler-Ross model of grief is usually described as depression, but
I'm going to talk about sadness. Depression and extreme sadness are
different but despite many attempts to draw one, there's no magical
dividing line between the two. Both can cause physical pain and
profound exhaustion, both can damage one's physical health, quite
apart from the ways they effect behaviour. Either one can lead into
the other.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
However, in general:</div>
<ul>
<li><div class="western" style="margin-bottom: 0cm;">
Depression may
feature a great mix of negative emotions including extreme sadness
but also raging anger, prolonged anxiety, panic or profound
numbness. Extreme sadness is more often mixed with more positive
emotions, like nostalgia, gratitude and love - sadness can be
bittersweet, depression not so much.</div>
</li>
</ul>
<ul>
<li><div class="western" style="margin-bottom: 0cm;">
Depressive
reasoning tends to lead to more extreme, pessimistic and
strongly-held conclusions. A non-depressed sad person may feel
despair that life has irrevocably changed, and wonder how on Earth
they will be able to cope. A depressed person may feel certain that
life is and will remain unbearable and they will not be able to
cope.</div>
</li>
</ul>
<ul>
<li><div class="western" style="margin-bottom: 0cm;">
Depression is more
likely to be unrelenting. A common experience when someone first
realises they're depressed is that they're in a situation where they
would usually expect to feel much better - in the company of good
friends, doing something they love etc., and they still feel
completely flat or on the verge of tears. Sad people inevitably feel
out of place in situations where others are happy and celebrating,
but it may be more possible to temporarily lift one's spirits. In
the same way, a sad person may feel that others understand and
support them, while a depressed person may feel very extremely alone
- feeling either like a burden to their loved ones, or suspicious
that others don't truly know or like them.</div>
</li>
</ul>
<div class="western" style="margin-bottom: 0cm;">
</div>
<div class="western" style="margin-bottom: 0cm;">
Although it is
impossible to draw a neat line, it is important to consider the
differences; sadness can be horrible but depression can be dangerous.
Because the lives of people with chronic illness - whether physical,
mental or a bit of both - are often difficult, it is easy for both us
and other people to mistake depressive symptoms as a normal response
to our primary condition or even part of that illness. A bit of a
tangent, but an important point.<br />
<br />
<br />
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
</div>
<div class="western" style="margin-bottom: 0cm;">
The Kubler-Ross model
is an imperfect model of what happens to everyone coming to terms
with loss. Some people skip stages, or experience these stages in a
different order and of course, some losses, like those experienced
during chronic illness, are ongoing - we sometimes return to stages
of denial, anger or bargaining when the loss deepens or we're somehow
reminded of loss we thought we'd gotten over.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Sadness is the black
hole that the psyche holds out against if at all possible. Whether
consciously or not, we tend to go to considerable lengths to avoid
the sadness. Unlike the stages before it, sadness gives you nothing
to do; denial, anger and bargaining each push a person towards some
kind of strategy, whether carrying on as if nothing has happened,
raging against the situation or negotiating a reprieve. Sadness
acknowledges the finality of loss - even if an illness might improve,
there's a certain kind of life which will never now be lived. Sadness
is hopelessness and helplessness and as I've mentioned before, the
mind will perform all kinds of scary tricks rather that to consider
itself helpless. To return briefly to my tangent about depression, I
have experienced depression on two occasions and to be honest,
neither of these were very heavy on sadness; I was scared and angry
(mostly at myself). I was scared of feeling the sadness I could see
coming and that fear made me want to die.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
However, eventually,
sadness is an almost inevitable feature of loss. It is deeply
unpleasant, of course, but it is natural and often necessary. While
we live in a culture which will, at least sometimes, tell you that
anger is useful (and it sometimes is), it is rare to hear that
sadness is sometimes absolutely vital in order to cope with loss. We
expect people to be sad, of course, but we expect that to happen in
an orderly culturally-appropriate manner - bereaved people can find
themselves subject to disapproval for grieving either too long or not
long enough (or, as is perhaps most common, fluctuating in their
grief over time).</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Meanwhile, the saying
goes that you don't know what you've lost 'til it's gone - that's
never been my experience. My experience is that you don't necessarily
know what you've got until you acknowledge what other things are gone
- that other possibilities that have fallen away. For me, sadness has
been the great stock-taking; it shows you both what you've lost and
everything you have left.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Whenever I have lost
loved ones, I am reminded of how generally very lucky I've been with
the people in my life, how lucky I am with those still living, and
all the gifts my loved ones give me. Every time I grieve for my
health – or the slightly better health I was enjoying a short while
ago – I become only more acutely aware of the people and things
that make life pleasurable even when I'm stuck in bed all day and
asleep for most of it.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This was not always the
case, because for many years, I tried to avoid this sadness. If I
ever cried about my health, I would cry in fear and guilt; I blamed
myself and felt that if things carried on in this direction, I
wouldn't be able cope and I would be an even greater burden on the
rest of the world. Part of this was because I believed I was useless
and worse health always meant a greater degree of uselessness. In my
first marriage, my worst health meant an escalation of abuse. But
part of this was because I never allowed myself to actually think
about what I had lost within that panicked grappling around for
answers.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I've been especially
conscious of this during the last several months when I have been
having a long crappy patch. I'm having to give up my editing work at
<a href="http://www.thefword.org.uk/" target="_blank">The F Word</a>. I've achieved very little work of any kind. Small fun
projects and social engagements have fallen away. A painless
complication caused a bit of a cancer scare - only a bit of one, I was fairly sure I didn't have cancer – which took a lot
of energy to get checked out and put me in something of a morbid
state of mind for a few days here and there. I got sad.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
However, when September
arrived and I began to think about the autumn, I was looking forward
to the months ahead. And to be honest, for most of the time I've been
ill, I would have been in a complete panic. I would be thinking about
the theatre tickets I have for the middle of October* and despairing
that I might not be able to go, and it will be a huge waste of money
and a grave disappointment to myself and other people. I would
probably, even this early, start to worry about Christmas – whether
I could be better by then, or whether my ill health would mess things
up for other people. I would be panicking about the last four months
of the year and how little I had achieved this year so far, and how
another year would pass without meeting X, Y or Z objective.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And of course my life
is much better now than it has ever been, so there are lots of
reasons why I can entertain the idea that I may spend a big chunk of
the next few months in bed without feeling desperate. But part of it
is that I let myself get sad. I never used to do that. I have let
myself cry over things I have had to give up. I have let myself cry
over the uncertainty. Then I've thought about those things in my life
more reliable than my health and felt extremely grateful.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is not a “So
really bad things are good things in disguise” argument; there are
obvious tangible ways my life would improve if my health did (and if
nobody I cared about ever suffered or died – is this so much to
ask?). All I'm saying is that the things that help us cope with
sadness are not present until that sadness is felt. I have perhaps
been lucky in my life not to be struck with any spectacular tragedy,
but in my experience, fear and guilt are a lot more difficult to
negotiate than sadness.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I'm getting repetitive
with sentiments along the lines of "our culture is pretty messed
up about this emotion" - and of course, in a way, this is
inevitable. Simplifying the breadth of human experience into
particular and thus limiting narratives is kind of what culture does.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Modern philosophies are
particularly bad with sadness. There's a whole world of books and
seminars dedicated to positive thinking which involves eliminating
negative thoughts - or even a bodged-up version of Buddhism which
places the responsibility for all unhappy feelings at the feet of
those who feel them. Even some versions of Christianity -
historically sometimes too accepting of sadness and suffering - now
demand that followers face every negative event with a smile because
it's all God's plan and those who lament their experiences somehow
lack faith.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Disabled people find
ourselves in a double bind with this sort of thing. <a href="http://www.bbc.co.uk/news/magazine-27554754" target="_blank">We are expected to be sad people</a>, perhaps especially people with chronic illness who
have lost a non-disabled life and who have debilitating and sometimes
demoralising symptoms. Many disabled people actively resist that; to
be sad is to give in to the problem – to give in to the stereotype.
Many many disabled people are encouraged instead to stay in earlier
stages of the grieving process; to <a href="http://blobolobolob.blogspot.com/2016/01/on-loss-chronic-illness-denial.html" target="_blank">stay in denial</a> and pretend that
things will improve at any moment, to dedicate one's time and energy
to regimes and therapies which promise to bring about recovery, to
not “give up”, <a href="http://blobolobolob.blogspot.com/2016/03/on-loss-chronic-illness-anger.html" target="_blank">to get angry and stay angry</a> in order to “battle”
illness. In other words, we are pressured to live up to another
stereotype.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Stigma is also a
problem. Some people with physical chronic illness who've been
through dismissal and misdiagnosis live in fear of being perceived as
even slightly depressed. And many politicised disabled people don't
want to be seen as being sad about things they know to be morally
neutral facts of their experience - facts for which are
automatically met with pity and unwanted sympathy from strangers. It
can feel like being sad – or certainly expressing sadness - about
our impairments is somehow letting the side down.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
On the other hand,
sadness is often portrayed as a romantic or heroic characteristic,
something which leads a brooding genius to stare out the window, a
single tear staining his cheek. We're pretty uncomfortable about
depression as a chronic messy illness, but there is a significant
element of our culture which regards sad people as deeper thinkers,
more sensitive and empathetic - so long as we don't see them crying
in public or wandering the streets in dirty clothes.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And
often, people with some kinds of chronic illness feel obliged to, to
some extent, perform their role as an unfortunate ill person. Not
necessarily for sympathy (although perhaps sometimes, for a good
cause – you never see anyone raising <a href="http://blobolobolob.blogspot.co.uk/2014/04/blogging-against-disablism-day-2014_30.html" target="_blank"><i>Awareness</i></a> in newspapers
and magazines with a smile on their face). But more often, I think
this performance is simply for peace – fed up of hearing that they
don't look or seem sick, or of newspaper stories about benefit fraud
whose headlines amount to <i>Disabled person seen having a good
time</i>, there's a temptation to show the world that you're
suffering.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I know some people are
really afraid of their lives looking too good; too comfortable, too
happy. And this is also about our unequal society in a more general
way; marginalised people of all stripes who seem to be having a good
life are those who most offend bigots – as Chimamanda Ngozi Adichie
says, "There
are people who dislike you because you do not dislike yourself.”
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Happy disabled people
are, after all, the least deserving of pity and for some people, our
only purpose is as objects of pity to make non-disabled folk feel
good about themselves. Unhappy disabled people are far less
provocative (at least if their unhappiness is relatively quiet and
passive).</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
All this risks
undermining authentic psychological reactions to the losses we
experience through chronic illness. We are stuck between a tragic
rock and a plucky hard place.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It's not that we
shouldn't feel sad (or angry, grateful, defiant, whatever) – but
that we should give ourselves emotional space to feel whatever we
happen to feel. We should reject both tragedy and the triumph over it
as personal narratives.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Because I feel sadness
is largely something we must ride out rather than something we need
to work through, here are some tips for managing sadness - not
for curing it, or moving on from it, but managing sadness rather as
you might care for a physical wound:
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<u>Attend to your physical
comfort.</u></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Make sure your diet is
as pleasant and nutritious as possible, that you are keeping warm (or
adequately cool during those few days of the year when it's a bit too
hot), are wearing attractive comfortable clothes and are spending
your time in as comfortable a position as you can manage. If
possible, work out some appropriate physical exercise and keep to
it. When possible, get a little sunshine and fresh air. Don't fight
the temptation to sleep unless you have a good reason to. If you have
one available, have an attractive person rub lotion into your back.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It's really amazing how
much physical comfort effects mood; I remember my mood once
transforming after I changed my socks when one had a hole in it - I
hadn't really noticed the hole, but the world seemed considerably
more bearable in its absence (if you donate items to homeless people
or refugees, priorities good strong socks).
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<u>Do not try to avoid
negative thoughts or universal sadness triggers.</u></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
You can't avoid
negative thoughts. You can promote positive ones. You can talk about
your negative thoughts and get a better perspective on them. Just
writing down your negative thoughts can help you begin to sort them
out. However, even when negative thoughts are irrational and
unhelpful (which, you know, they aren't always), they can't simply be
willed away, or drowned out with loud cheerful music.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Folk sensibly attempt
to control their exposure to material which upsets them, but this is
only possible for fairly specific material - like avoiding graphic
depictions of a particular kind of violence or checking <a href="https://www.doesthedogdie.com/" target="_blank">whether thedog dies</a>. Trying to avoid things – thoughts, stories,
conversations, news etc. - which are sad is not only a futile and
miserable exercise, but also a recipe for anxiety. Even if you're
not feeling sad or reading about something sad, something may come up
at any moment to change that. So you're left feeling on guard and
unable to fully engage in anything new or potentially interesting.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I find it helpful to
consider passive activity like the music playlists I put together. A
good all-round playlist has a combination of fast and slow tracks,
upbeat and sadder songs. If you're reading, watching TV or whatever,
then sad content will come up even in comedies and children's shows
(especially children's movies - goodness me!), and that's okay so
long as it's part of a mix. Material which is interesting, where
you're learning stuff, or which allows you to have a conversation
with other people (now or later) is also very good.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<u><br /></u></div>
<div class="western" style="margin-bottom: 0cm;">
<u>Express your sadness.</u></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
When someone you love
died last month or even five years ago today, it is entirely socially
acceptable (if not always easy) to talk about your sadness. With
chronic illness, when sadness effects us can be fairly random – or
at least random to other people who don't see whatever events have
triggered the spell. However, I strongly recommend trying to tell
someone, just so this thing can be heard and acknowledged. Failing
talking to a friend, write about it, compose a song, draw a sad
picture to get it down in some form. It is when sadness is not
expressed that it is most likely to fester and mutate into something
else; something bigger and messier. Not just a fresh depression,
which is a risk, but also common or garden bitterness and resentment.<br />
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<u>Look forward to small
events which will happen.</u></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It's probably an
instinctive habit for people with chronic illness to look forward to
the next meal, the next episode of a television programme or the next
chapter of a book, but it is sometimes necessary to do this
consciously. When you feel sad about the way your life is, it can
feel pathetic to get excited about the small stuff, but the small
stuff really is amazing. We live in an amazing world. That's not a
reason not to be sad - terrible things happen in this amazing world
of ours - but it is a reason to value all the joy we have available
to us today. The sun will rise in the morning and the flowers will
bloom in the spring. If possible, plant some bulbs.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<u>Keep a record of your
gratitude and pride.</u></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is hard but helps
me a lot when I'm struggling at all. Get a notebook or allocate a
text file and towards the end of each day, write down something
you're grateful for and something you're proud of. It doesn't have to
be anything amazing - you might be grateful for having a nice warm
pair of socks and proud that you wrote out a birthday card. If you
have more things to feel grateful for or proud of, write them all
down. This does not cure sadness or any other negative emotion, but
it allows you to focus, regularly, on good things you have in your
life and good things you have in yourself.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
* At the point of publishing, having pretty much resigned myself to abandoning the theatre trip, it looks like it might actually happen. Hooray! </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com2tag:blogger.com,1999:blog-10557263.post-31049486853695606312016-06-23T15:07:00.001+01:002016-06-23T15:07:53.600+01:00The EU Referendum, Hope & Despair<div class="western" style="margin-bottom: 0cm;">
When they announced
that there was finally going to be a referendum on the UK's
membership of the EU, I thought, "Well, that's it then. We're
out."</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The European Union is a
truly excellent idea, imperfectly - and sometimes badly - put into
practice. I felt sure we would vote to leave because it has long
provided a political scapegoat for domestic politicians of all
stripes - it is rather like an absent wife, who a husband might moan about and use as an excuse for his own inaction and inadequacy.
All his mates think he would be so much better off without her, but
then one day they actually meet her and wonder how such a woman puts
up with a twat like that. Not that she's an angel, mind you. But he
is a complete twat.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Whatever happens, the EU
will still exist tomorrow and honestly, that is a wonderful thing. My
parents have got into their sixties without seeing any outright
conflict between the countries of Western Europe - possibly the first
generation to do so since people started organising themselves
into approximate nations. I grew up at the tail end of the Cold War,
but a further conflict between us and one of our close European
neighbours has been and still is completely inconceivable, because of an idea borne out of discussions that started at the end of a war which killed around 3% of the world's population. This is an incredible achievement.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But of course the EU is a collection of countries with different political cultures and mostly muddles through, sometimes failing to act on urgent matters, sometimes acting badly. Fairness is an extremely messy question when you're talking about such a diverse group of countries with equally diverse needs and resources. The EU is one of the best political ideas that anyone ever had, but you know, it's not brilliant. It is merely better that we should be part of the effort.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<a href="https://en.wikipedia.org/wiki/European_Convention_on_Human_Rights" target="_blank">The European Convention of Human Rights</a> has been by far the most successful application of
the tenets first written down in the <a href="https://en.wikipedia.org/wiki/Universal_Declaration_of_Human_Rights" target="_blank">Univeral Declaration of Human Rights</a> in 1948. In principle - although again, far less often in
practice - people in the EU have these rights. Our governments can't
kill us unless we pose an immediate threat to others. Our governments
can't torture us or imprison us indefinitely without trial. They
can't interfere with our family life, our religious practices or our
private lives in general. I can characterise the government of my
country as a twat - I can say pretty much whatever rude things I like
about them without fear of interference.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is <i>amazing</i>. We
think it's normal, but it's not normal. It is justice, it is right,
but most people in the world do not have nearly this degree of
freedom. And it is freedom. Human Rights are often framed as
protections - which they are - and of course, most people feel
comfortable and comfortable people don't feel they need any
protection. But the reason we feel so comfortable is because we are
free! And those of us who care most about Human Rights are usually those who
are less comfortable or who know that, elsewhere or not so long ago,
our lives would be dramatically blighted by governments who would wish to control, silence or eliminate people like us.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And of course, in
reality, Human Rights are still abused in Europe, including the UK. There are
outright violations like police brutality and abuse, and there
are still actual laws on our books which fall short of those sacred
tenets. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And this is relatively
young legislation, so there have been some fabulous newspaper
headlines about ridiculous cases being brought under Human Rights
legislation, with no follow up article when such a case is thrown out
of court. But after a bloody long battle, our <a href="http://www.legislation.gov.uk/ukpga/1998/42/contents" target="_blank">Human Rights Act</a> remains the most fantastic
delicious and brilliant piece of legislation ever enacted in our country.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Whatever happens
tomorrow, this is still the case. The EU remains intact, whether
we're in it or not and you and I and the rest of the planet will
still be better off for that fact. The EU gave us Human Rights and
we'll still have them tomorrow. We'll always have to fight our
government for them - this one has <a href="http://www.theguardian.com/law/2015/dec/02/plan-to-scrap-human-rights-act-delayed-again" target="_blank">threatened to scrap ours</a> - because
people in power always want more power. The EU has also given us a (metric) tonne of equality and workers rights legislation. It has made us a
safer, healthier, freer and more just country. That can't be undone
overnight.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Like I said, when they
announced the referendum, I thought it would be straight-forward. I
have been both gratified and disappointed at how wrong I was.
Gratified because an awful lot of people - far more than I imagined -
feel as I do or have come round to my way of thinking. Disappointed
because the argument has become so ugly. I had imagined any argument
would have been about bureaucracy, about future expansion
of the EU's powers and about money - how much money goes into the EU
and how much comes out. I'm appalled at the racism and hatred I have seen in the
last few months. Appalled and frightened. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Whatever happens, our
country needs to do a lot of healing from all this.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
We all need to be
careful about our bubbles. I've seen a lot of racism (often with a
sizeable pinch of homophobia, disablism and misogyny mixed in) because I've
seen it on Twitter and because it has been highlighted by anti-racist
friends and allies. And I won't say "but clearly, 50% of the
country aren't racist" because we live in a racist society and
such a statement would wrongly exonerate the other 50% as well. However, many
Leave voters will simply not have witnessed this behaviour from their
fellow voters. Some will only have seen the debate as reported in a
particular newspaper, in the local campaign literature or as portrayed by friends, family and colleagues. Some will not have
seen much of the debate at all, but will be voting according to their
own values or priorities which have absolutely nothing to do with
being scared of or feeling superior to people from other countries and cultures.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
So if we vote to Leave,
we ought not to despair of our fellow countrymen, women and others.
We're in a mess - as I was growing up in the 80s and 90s, there was greater
and greater acknowledgement that racism was a problem which decent
people tried to combat in themselves and others. In recent years,
increasing Islamophobia has twisted that trajectory and in the last few
months, I feel that public discourse has taken a firm step backwards. However, whatever happens now, we need to start sorting
this out and that won't work too well if we start from the perspective that half of everyone around us is a raging Nazi.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Some people are afraid
we're about to swing even further to the right but I think that's the one
good thing about this referendum; it answers a question which has
been used to stir up anger for the last few decades. That momentum is
about to drop away. If we vote Leave, the economy is about to take a
dip - even if things work out well long term, this is pretty much
inevitable. If we vote Leave, our Prime Minister may resign and there
may even be a general election in a few months, but the EU will no
long be a factor in that election - why vote for someone offering
independence and almost nothing else when that's already been achieved?
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
That's not to say this
whole debacle has not been immensely damaging. It has been by far the
most divisive set of political events in my lifetime. It has brought
out the very worst in some of us, including some very powerful people who hold significant influence over our lives. <a href="http://blobolobolob.blogspot.co.uk/2014/05/this-is-what-devil-looks-like.html" target="_blank">The devil</a> is now a regular feature on our TV screens, even though he doesn't yet control their content. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
We will need to deal
with all this, whatever. But the EU will still exist, we will still have Human
Rights and it would be a great mistake to fall into despair at any
outcome of this referendum, given how much work now needs to be done.</div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com2tag:blogger.com,1999:blog-10557263.post-16303312608220479442016-05-09T10:47:00.000+01:002016-05-09T10:53:47.444+01:00On Loss & Chronic Illness - Bargaining<i><b>Content Note: Refers to domestic abuse, disablist abuse, some mild swearing.</b></i><br />
I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:<br />
<audio controls="">
<source src="https://archive.org/download/bargaining/bargaining.mp3"></source>
If you cannot see the audio controls, your browser does not support the audio element
</audio><br />
<br />
<div class="western" style="margin-bottom: 0cm;">
In the face of loss,
folk clutch at straws for something that will make everything okay,
make deals with their gods, plead with their departing lover and so
forth. Even after someone has died - especially if it's happened
suddenly - their loved ones may run through a whole heap of scenarios
where, if only one tiny detail had changed, if only they had
personally picked up the phone or paid a random visit, the death
could have been avoided. It's all too late, but the mind continues to
try and negotiate an alternative deal.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I said in <a href="http://blobolobolob.blogspot.com/2016/01/on-loss-chronic-illness-denial.html" target="_blank">my post about denial</a> that our disablist culture helps to keep people with chronic
illness stuck along the process of coming to terms with loss, and
this is especially the case with denial and bargaining.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
We are encouraged to
bargain for our health in the same way we're encouraged to keep an
unflinching faith in the unlikely prospect of fast and full recovery.
With chronic illness, it's difficult to engage even with conventional
medicine without psychologically bargaining; believing that if you do
the right thing, eat the right thing, take the right meds etc., then
you will minimise what you've lost.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But this is chronic
illness - by definition, conditions which can't be cured and don't
usually go away by themselves (and if they do, they take ages). These
illnesses tend to fluctuate and both relapse and remission can arrive
either at random or due to events we have no control over, such as
trauma, viruses or family stress.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Taking care of our
health should never be about minimising a loss - that's simply not up
to us - but rather maximising our chances of being as well,
comfortable and happy as possible. When we feel like it. If we overdo
it today, we're not breaking some cosmic deal; we don't deserve to
feel like crap for the next week because we don't deserve any of it.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And that's something
which is sometimes very hard to remember.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
A significant part of
what we lose when we become chronically ill is about identity and one
of the worst psychological - and sometimes spiritual - effects of
chronic illness is that it gets harder to believe that you are a good
person.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Everyone wants to feel
like they're a good person and most people find at least some
sense of this in the things they do for others.
Even if they don't spend their day saving small animals or lifting
children out of poverty, many people's work is useful and helpful to
someone else – people who genuinely feel their work is pointless
<a href="http://www.vice.com/en_uk/read/what-is-the-point-of-your-job-389" target="_blank">have a problem</a>. Then there are the roles we have within family,
within friendships and communities; people feel good about looking
after one another.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Whatever our level of
capacity, people with chronic illness can do somewhat less than we'd
like. Some of us can't do very much at all. The best intentions in
the world can't give an elderly neighbour a lift to the hospital,
babysit for an afternoon or simply show up and be with a friend whose
world is crashing round their ears. Lower incomes limit our ability
to throw money at other people's problems or give money to good
causes. A low income plus low energy even limits our ability to make
ethical or environmental choices as consumers; we can't necessarily
afford to turn down the thermostat, buy Fair Trade undies or
<a href="http://www.buynothingday.co.uk/" target="_blank">self-righteously abstain</a> from seasonable sales when the things we need become briefly affordable.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Then there's the fact
that what our culture holds up as especially virtuous is even more
inaccessible than the quiet good of doing the best for the people and
causes that matter to us. Ordinary people are always happy to put
their hand in their pocket for a good cause, but to be seen to be
good, you can't just ask around your kith and kin; you have to spend time, money and energy climbing mountains dressed as Spongebob Squarepants to raise just as much as you might have done rattling a tin*.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Beyond our diminished
ability to do good and especially to be seen to do good, experience
within a disablist society then gives us a hundred other reasons we
can't be good people. Friends and family members quietly shuffle out
of our lives, some employers <a href="http://www.disabilitynewsservice.com/traumatised-disabled-teacher-says-council-allowed-bullying-to-continue/" target="_blank">behave absolutely hatefully</a>, people make
jibes or well-meaning but tactless comments and both professional and
social invitations dry up.
</div>
<div class="western" style="margin-bottom: 0cm;">
</div>
<div class="western" style="margin-bottom: 0cm;">
In fiction, folks with
chronic illness are at best innocent victims, abused, cheated on,
heading off to Switzerland, the sweet but inconvenient relative who
hampers a protagonist's journey. Otherwise we are serial killers or embittered tyrants,
trying to control the world from a position of weakness and
deformity; our illnesses are metaphorical and often fake.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And then we get onto
politics. Campaigns against welfare and social care cuts are partly
about money, but if you listen carefully, what you hear more than
anything else, are protests of innocence. In order for what's been
happening to us to be in any way fair and just, we'd have to be a
complete bunch of bastards. I can say that casually, but it's very
difficult not to internalise at least some of the crap we hear from
politicians and in the media and in the wording of the letters and
assessments.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
So while there might be
something natural about being less able to do stuff, needing greater
support from others and thus struggling with feelings of inadequacy,
this is a feeling enforced over and over again by capitalist
disablist society.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Thus even after we've
largely come to terms with ill health, I think a lot of us are still
busy bargaining for our souls.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Of course, something
people with chronic illness are pretty good at is suffering. Our
culture frequently confuses suffering for real virtues like hard-work
and patience - so much so that should one of us ever express the fear
that they are not a good person, we may well be informed that, of
course we're good - we've been through so much!
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Suffering is not
entirely unrelated to virtue. Some Catholics with chronic illness
talk of offering up their suffering - they endure the pain and misery
of illness so that they or dead loved ones won't have to spend so
long in purgatory. It's not unreasonable to judge people favourably
who have endured suffering without becoming embittered or angry with
the world. Nelson Mandela was not a hero because he was imprisoned
for 27 years, but the fact he wasn't overflowing with hatred towards
the folks who put him there is an aspect of his heroic story
(although perhaps an overplayed aspect among those who like to see
heroes of anti-racism as supernaturally patient and peace-loving).
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The goodness of those
who suffer is about resistance; <i>not</i> giving into
temptation, not being an arsehole about it, maintaining compassion
for others and so on. But suffering itself doesn't make us good.
Avoidable suffering is a complete waste of time and energy.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
In my twenties, I used
to think that a certain zealousness about ethical and environmental
consumerism was fairly normal to my generation – not universal, but
common. Then I noticed that even though we'd all grown up with a
knowledge of climate change, animal welfare and workers rights, this
preoccupation was unique to those friends with chronic illness. It
wasn't like the others didn't care or weren't conscientiously engaged
(although some weren't), but I didn't know any healthy people who did
the sums about whether it was better to buy British tomatoes
grown in heated greenhouses or Spanish tomatoes than needed no extra
heat in their cultivation but had to be flown here from Spain.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
If you set about trying
to manifest your personal goodness as a consumer, you've lost before
you start. All organisms consume – everything takes stuff from the
environment and uses it in order to live. In the absence of
tremendous physical energy, strength and anti-social tendencies,
humans are forced to live around other humans and source food,
shelter and warmth within the imperfect systems our species have
created. Folks can do good when they are wealthy enough to experiment
with the greenest new technologies - solar panels, electric cars,
zero carbon homes etc. - or when they have the power to confront or
change these systems.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Everything else is
about minimising the tiny wee flicker of harm an individual has to
contribute to the great fiery ball of harm our species is currently
causing to one another and our habitat. And yet of course, as long as you're alive, you can always reduce your consumption a little bit further.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Take the thermostat. I
have poor circulation and I don't move round much; I get cold and
cold makes my pain worse. And I don't go out much at all, so in the
winter I need to be in a heated home. For years, I was wearing four
or five layers, plus hat and gloves - restricting my movement, using
up my precious energy - in order to keep the thermostat as low as
possible. But of course, it could have gone lower. I could have put
on my coat and stay under the duvet all the time. It could have got
colder and I wouldn't have come to great harm - I would have merely
been less comfortable. I was suffering, but I was still
managing to destroy the planet.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I became obsessed with
toiletries – the plastic bottles; the bubbles and chemicals I was
sending down the drain. At one point, for quite a while, I didn't use
any cosmetic products apart from hand soap and toothpaste. I didn't
smell – I bathed as regularly as I could and wore clean clothes,
but I never felt clean and my hair looked awful all the time (some
people don't need to wash their hair in order for it to look clean
but some people really do). But toothpaste tubes - they're not
recyclable, are they? I was still generating waste.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
What I did spend money
on was craft materials because I always intended to use them to make
things for other people (and I did, a lot, but of course, I managed
to accumulate a lot I hadn't used and felt guilty about that too).
I've written before about <a href="http://blobolobolob.blogspot.com/2014/04/the-history-of-my-adult-life-in-about.html" target="_blank">my angst around stuff</a> and the fear that the
mere fact of having things I didn't desperately need was itself a
symptom of excessive consumption. I'm not the only person I have seen
that in and all my fellow travelers are chronically ill.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Being mature for his
age and an extremely empathetic listener, younger Stephen prided
himself on the word of praise he most often heard as a teenager and
young man; he was a rock. He listened to the problems of friends,
family and an abusive girlfriend, then he sought out other troubled
people and listened to them too. He joined mental health chatrooms in
order to listen to strangers rant and rave, express their violent
thoughts towards themselves, sometimes others and occasionally
himself. He was there to help people by listening, which was
something he was very good at - he wasn't getting off on other
people's misery. But when long and distressing conversations damaged
his own health - when helping others caused him suffering - he felt
he might not be such a bad person after all.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Having grown up (as I
did) on a history syllabus awash with graphic images of genocide and
torture (and not finding anything suspect about that), Stephen
believed that there was virtue to be found in being witness to the
suffering of others. Thus he sought out stories and videos of
terrible things happening, as if he could absorb some of the pain. "I
was already suffering," he says, "so it struck me that I
could always take on a bit more."</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
These days, Stephen
doesn't like to be called a rock because he says the thing people
like about rocks is that they are unyielding and unfeeling; a rock
isn't someone who can be hurt or exhausted by someone clinging onto
it, standing on top of it or kicking it repeatedly.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I get this because of
the dynamics of my own abusive marriage. There's a stereotype about
victims of domestic violence that they have martyr personalities -
that they somehow want to be hurt, so they can feel somehow ennobled
by the suffering. This is nonsense, mostly because it portrays
victims as people who are far more conscious of and in control of
these situations than they usually are. However, I did think that
putting up with the abuse somehow made me a less terrible person. Of
course, the abuse made me feel like a terrible person, so that's kind
of circular. But being able to forgive and forget (as I thought I was
doing) and keep caring for someone who had hurt me made me feel like
I was doing something good.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I guess it's all about
guilt again. The things people do to try to avoid feeling guilty
don't do any good to anyone. Often they make things worse; doing
things for other people in order to ease your own pain can make it a
lot harder to concentrate on what other people want and need. Guilt
consumes energy which you could be spending on anything else - <a href="http://blobolobolob.blogspot.com/2011/06/looking-after-yourself-as-radical.html" target="_blank">like looking after yourself</a>. It is possible to care for other people
without caring about oneself, but it is very much harder to do other
people any good if we don't first take care of ourselves.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
We're told as children
not to compare ourselves to others, but when we live in a culture
which tells us the opposite half <span style="font-family: "times new roman" , serif;">a
dozen times a day, we need to consciously resist the temptation - not
just in terms of whether or not we are good people, but whether we
are loveable, important, have adequate electronics and so forth.</span></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: "times new roman" , serif;">According
to the Bible, Jesus said, </span>
</div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<span style="color: #001320;"><span style="font-family: "times new roman" , serif;"><br />"Consider
the lilies how they grow: they toil not, they spin not; and yet I say
unto you, that Solomon in all his glory was not arrayed like one of
these."</span></span></div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<span style="font-family: "times new roman" , serif;">What Jesus is saying
here is dress to impress. Select your pyjamas for both style and
comfort. </span>
</div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<span style="font-family: "times new roman" , serif;">On a more serious if
surreal note, you are something of a lily, dear reader. Earlier on, I
said that many people find some sense of being a good person through
work because most work benefits others in some way. Well, right now -
although I'm writing this partly to organise my own thoughts - you are facilitating this effort, just by being there and
reading this, making it worthwhile. You don't have to lift a finger,
I might not know you at all, but I'm very grateful that you're there.
You are taking a positive part in the universe. </span>
</div>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://farm9.staticflickr.com/8078/8294975560_b05529386f_b.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://farm9.staticflickr.com/8078/8294975560_b05529386f_b.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ajax looking after Stephen<br />
(a black toy poodle sits on the legs of a handsome reclining<br />
white man with dark hair and glasses)</td></tr>
</tbody></table>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<span style="font-family: "times new roman" , serif;">If JC had met any,
he might have also asked us to consider the poodles. When Stephen and
I lived with my in-laws and their toy poodles, Cassie and Ajax, the
six of us were a pack, each with our own role. Cassie and Ajax's
principle role was to be looked after; to be fed, taken for walks,
played with and let outside to toilet.</span></div>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<span style="font-family: "times new roman" , serif;">For much of the
time, Stephen's or my role was also to be looked after and the dogs helped with
that; if one of us was stuck in bed, they'd come to visit and sometimes sit
with us a while. During such times, none of us were <i>useful</i>, except
that we gave and received love. The dogs did and still provide
company, structure and purpose to my in-laws' day. Mum and Dad W are
both disabled pensioners but nevertheless busy people - it's not like
they'd fade away without the dogs to keep them going. But the dogs
are important.</span></div>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://farm9.staticflickr.com/8044/8132865502_fffc3bf0f5_b.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://farm9.staticflickr.com/8044/8132865502_fffc3bf0f5_b.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cassie looking after Stephen<br />
<span style="font-size: 12.8px;">(a black toy poodle sits on the legs of a handsome reclining</span><br />
<span style="font-size: 12.8px;">white man with dark hair and glasses)</span></td></tr>
</tbody></table>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<span style="font-family: "times new roman" , serif;">The dogs also
provide something very special to their human companions. A pet
allows a person (with the capacity to look after it) the opportunity
to give another living creature a really good life; to increase the
sum of happiness in the world. Being someone to love is no bad thing.
And almost all of us are that to some people, even if they don't live
with and actively look after us. </span>
</div>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<div align="LEFT" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<span style="font-family: "times new roman" , serif;">There are some
elements of loss associated with impairment which will never go away.
Sometimes I get tearful when Bob Marley sings, "My feet is my only
carriage" because I mourn a time when I used to walk everywhere
and took that entirely for granted. I still fantasise about going for long walks without having consider wheelchair-suitable terrain. It's fine; I don't wake up each day resenting my
incapacity to walk very far, but if I've not stopped pining now, I
probably never will. </span>
</div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
In the same way, the desire to do good and be useful are pretty basic
human inclinations. I genuinely believe that - people fail all the
time, prioritising other things or held back by some fear or other,
but I think most people want to do good and be useful.
</div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
<br /></div>
<div align="JUSTIFY" class="western" style="line-height: 0.53cm; margin-bottom: 0cm; orphans: 1;">
So relative powerlessness is always going to hurt. The important
thing is to recognise that our supposed uselessness is very much
exaggerated by the disablist world we live in. Everyone is obliged to
do what they can and the contribution each individual makes is so
personal and nuanced that it can't - and should never - be compared
to that of others. If we are still involved in the lives of other
people in some way - even in a very passive way - if we love others
and let them know that - then we are doing what we can.</div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com0tag:blogger.com,1999:blog-10557263.post-52763992070410526172016-05-01T00:01:00.000+01:002016-05-01T00:10:29.570+01:00BADD 2016: Legitimate Disability<div class="MsoNormal">
<a href="http://tinyurl.com/badd16" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Blogging Against Disablism Day, May 1st 2016" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh26LD1wFZHKQUjLZVidcpqpMYIShd5fQv1SdOqhq_sEBzfge8XPkjKt7lzKqF8z074XxcSMV_tBokCZNqwvhsL7XoQUHT-uTmlRXUmXLRyaZN7gwx9_GK3px24NqZJtqtWNyxJ/s320/bad02.gif%20%C2%A0" title="Blogging Against Disablism Day, May 1st 2016" /></a><b>Today is Blogging Against Disablism 2016. Please head over to <a href="http://tinyurl.com/badd16">the main page</a> to read other people's contributions.</b><br />
<br />
Hopefully there is audio available for this blog post:
<audio controls="">
<source src="https://archive.org/download/BADD2016goldfish/BADD2016goldfish.mp3"></source>
If you cannot see the audio controls, your browser does not support the audio element
</audio><br />
<br />
I like to think that after all
these years, I am supremely confident being a disabled person in public. By far
my most negative experiences as a disabled person have taken place behind closed doors. I know I
have all kinds of subtle and superficial things to my advantage and yet, I’m still self-conscious whenever I stand
up in public, or when I’m walking about in my garden. It would be ludicrous to avoid being seen on my feet lest I should confuse anyone who sees me in a wheelchair, but it's tempting. I'm conscious that I might be suspected of some kind of fakery, just because - like most wheelchair-users - I am not completely incapable of walking.<br />
<br /></div>
<div class="MsoNormal">
After decades of
struggle, disabled people have something of a protected status now; people
do still say outrageous things about us, but it’s generally accepted that
hatred towards disabled people is not okay. The darkest disablist rhetoric - that we are dangerous, degenerate and undeserving of life is most commonly reserved for fiction; newspaper style guides no longer use words like "cripple" or "psycho" but <a href="http://www.theguardian.com/society/2016/apr/05/words-matter-mental-health-speak-out">slip them in</a> when talking about fictional characters.<br />
<br />
But there’s a work-around: you can express hatred towards disabled people, so long as you claim that your victims are not really disabled.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is how the British government
have put through <a href="http://lisybabe.blogspot.com/2015/05/how-many-politicians-does-it-take-to.html" target="_blank">a raft of cuts to disability benefits and social care</a>, whilst <a href="http://wheresthebenefit.blogspot.co.uk/2015/05/manifestly-abusive.html" target="_blank">all parties still insist that they want to provide more for the most vulnerable people</a>. And this is a recurring pattern; an individual, a newspaper
or any other organisation can claim to support us, while bashing some of our
number, so long as they argue that the people they’re attacking don’t really
count as disabled. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s not just disablism that operates
this way - modern British racists tend to target Muslims, arguing that Islam is not a race, and Eastern Europeans, arguing that if their targets have pale skin, it can’t really be racism. It plays upon the
idea that belonging to a minority and not being abused is some kind of special privilege,
a special club with highly restrictive criteria, carefully policed in case everyone crowds in and demands not to be abused, harassed or discriminated against.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It is ridiculous, but it remains a powerful and pervasive
idea. In the struggle against increasingly negative government rhetoric, the
term <i>genuinely disabled </i>entered the vocabulary of disabled activists
themselves. Arguments began to be made which portrayed idealised disabled people as hard-working, long-suffering and thus deserving of accommodations and support which had previously been regarded as unconditional entitlements. Arguments became about compassion rather than rights.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
........</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ten years ago, when I first
started Blogging Against Disablism Day, I had an e-mail exchange with someone
who described themselves as <i>transabled</i>. They felt they were paraplegic in a way fundamental to their identity, but they had no spinal injury . They wanted to take part
in BADD but expected I would forbid it. Taken aback, I didn’t handle it
brilliantly, but eventually concluded that BADD was open to everyone and anyway,
of course, this person was disabled; they had a <a href="https://en.wikipedia.org/wiki/Body_integrity_identity_disorder">mental health condition</a> (a highly
stigmatised one at that) and any time they used a wheelchair – as they sometimes
did, as that was the most comfortable way for them to get around – they were subject to the same experiences as any other
wheelchair-user. <o:p></o:p></div>
<div class="MsoNormal">
<br />
I've often thought about why traffic stops for me, a white thirty-something female wheelchair user, when Stephen, a white thirty-something male on a mobility scooter, has to wait much longer to cross the road. Gender is probably in the mix and I wear brighter clothes and am easier to notice, but it's fair to say that scooters carry a certain reputation. Scooters are popular among older disabled people whose disabled status is generally taken less seriously, as if older people have less need to exist and get around than younger people.<br />
<br />
It’s also <a href="http://www.theguardian.com/society/2012/may/02/trouble-with-mobility-scooters">widely believed</a> that
some people who use scooters are perhaps lazy. Of course, it makes precisely no difference why a person rides a scooter or uses a wheelchair, why a person walks with a stick or a
crutch or anything else. I
have serious doubts that anyone would use a mobility device, taking on all the
stares, remarks, the increased vulnerability and the slight but ever-present
risk of abuse or harassment, just in order to avoid walking unless the effort of walking was a very significant problem.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But what if they did? Why would it
matter? Can a ramp or an elevator only be justified if absolutely everyone who
rolls over it has an absolute and vital need to be sat down? Are <a href="https://www.thefword.org.uk/2015/07/trigger_warnings/">content warnings</a> only necessary for people with severe mental ill health? Should there only be subtitles on TV programmes that might be of some interest to deaf audiences?<br />
<br />
.........</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Apart from those with spinal cord injuries, everyone I know who has become a wheelchair user as an adult regrets
waiting so long. For my own part, I had been unable to leave my home for a
year. This happened twice: My walking improved for a while and I no longer needed a wheelchair, but when things deteriorated, despite my
past experience, I still held out another twelves months indoors.
Friends report similar resistance.<br />
<br />
Part
of this is optimism or <a href="http://blobolobolob.blogspot.com/2016/01/on-loss-chronic-illness-denial.html">denial</a> in the face of declining health - even doctors can be discouraging when people ask for wheelchairs - but part of it
is that oppressive idea of legitimacy. If you can walk a few steps – as the
vast majority of wheelchair users can – then maybe you can, somehow, get by
without one. If your walking might improve then maybe it is better to wait for that to happen. There's a sense that you have to fully <i>deserve</i> a wheelchair. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This same silly dance takes place
with benefit claims, Access To Work, getting a Blue Badge parking permit, sorting out accommodations
at college or work, asking for or accepting effective medication and buying any kind of kit or equipment associated with
disability. <o:p></o:p><br />
<br />
For many people, the same thing happens with using the word <i>disabled</i>. Of course some people simply reject the word, but almost every Blogging Against Disablism Day, someone will confess that they're not exactly disabled, but have experienced this thing which seems very much like disability discrimination. People with mental illness - one of the most stigmatised groups of disabled people - seem to struggle with this more than others. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
..........</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is all about power. To question
someone’s experience, especially a personal, painful and partly internal
experience is a power trip. And people get off on that, the sense
that they’ve caught someone out, stuck out their foot and tripped someone up. Stories about liars make good little tragedies; hubris, crisis, downfall. Last Blogging Against Disablism day was slightly marred by an anonymous troll on <a href="http://crpsylife.blogspot.co.uk/2015/05/dear-mr-cameron-from-someone-whos-life.html?spref=tw" target="_blank">Becca's blog</a> about the rich life she leads despite being unable to work. The troll's protest amounted to, “You’ve made your life look like too much fun; other people
will hate you for it.”</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s important to remember that
ideas of legitimacy are all about power. It’s important to remember that for
our own sake when this stuff comes up. Questions raised can be very personal, but it’s never because
we, ourselves, come across as shifty or untrustworthy - it is because other
people want to exercise power over us. It’s also important to remember, so we can avoid slipping into this ourselves, talking of those who count or those who don’t count. Too many
disabled people find themselves caught up by the <a href="http://blobolobolob.blogspot.com/2011/08/disability-hierarchy-1-introduction.html">hierarchy of impairment</a>, and resort
to dismissing those who have less power than themselves; those without a
diagnosis, those with other kinds of symptoms, those who live with greater stigma.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Meanwhile, we can do a lot about it. We can remove this power in the way we discuss disability, access and accommodation. We can reject terms and ideas which imply that some who use the language of disability are frivolous and fraudulant while others are legit. We can actively resist a culture which suggests we can gain acceptance by constantly <a href="http://blobolobolob.blogspot.com/2014/04/blogging-against-disablism-day-2014_30.html">explaining ourselves and our conditions</a>. We can acknowledge disability as a social experience rather that a clinical category. </div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com2tag:blogger.com,1999:blog-10557263.post-7655561187767462112016-04-19T10:17:00.003+01:002016-04-19T10:17:56.498+01:00Blogging Against Disablism Day 2016 will be Sunday, May 1st<a href="http://tinyurl.com/badd16" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="Blogging Against Disablism Day, May 1st 2016" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh26LD1wFZHKQUjLZVidcpqpMYIShd5fQv1SdOqhq_sEBzfge8XPkjKt7lzKqF8z074XxcSMV_tBokCZNqwvhsL7XoQUHT-uTmlRXUmXLRyaZN7gwx9_GK3px24NqZJtqtWNyxJ/s320/bad02.gif%20%C2%A0" title="Blogging Against Disablism Day, May 1st 2016" /></a><br />
I'm putting this year's <a href="http://tinyurl.com/badd16">Blogging Against Disablism Day</a> on its own page (linked on the sidebar), which will also be the place where I compile the archive.<br />
<br />
Please head over there, please spread the word and please do write something and report back on or around May 1st if you are able.<br />
<br />
Thank you in anticipation!The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com0tag:blogger.com,1999:blog-10557263.post-11340571122295693922016-03-09T10:29:00.000+00:002016-03-09T10:29:19.814+00:00On Loss & Chronic Illness - Anger<i>Content warning for brief references to self-harm, domestic abuse and all variety of disablist nonsense.</i><br />
<i><br /></i>
I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:<br />
<audio controls="">
<source src="https://archive.org/download/Anger1/anger%20(1).mp3"></source>
If you cannot see the audio controls, your browser does not support the audio element
</audio><br />
<br />
The perfect management of a fluctuating chronic illness is impossible. So long as the precise nuances of your body and brain remain unseen, you will overdo it. You may sometimes be over-cautious and do less than you could. And you won't really know what you've done until it hurts a lot more.<br />
<br />
Beyond this, you sometimes do too much because there's something you want to do, or get done, or because you're frustrated, angry or anxious and you can't stand to stay still with that feeling.<br />
<br />
When I first began to realise this – that things would not improve just <a href="http://blobolobolob.blogspot.co.uk/2016/01/on-loss-chronic-illness-denial.html">by pushing and pushing</a> – I was filled me with rage towards myself. I would swear at and curse myself out loud. I was disgusted with a body which refused to co-operate. I injured myself and made half-hearted attempts on my life. It wasn't that I was sad or disappointed in myself; I was livid.<br />
<br />
At this time, I began talking to the man who would become my first husband. This person carried a hell of lot of red flags, but having tricked myself into ridiculous hope, I no longer trusted my instincts. One of these red flags was the fact that this man in his mid-thirties was angry all the time at pretty much everything, even with a teenager he was talking to on-line. However, I felt crap about myself, and this anger made more sense than the kindness and support of my true friends; I figured they must be deceived about me, while he was not.<br />
<br />
<br />
<br />
Our culture isn't great when it comes to extreme negative emotions like sadness or anxiety, but it's pretty atrocious when it comes to anger. For one thing, there is a profound social hierarchy in who is allowed to express anger. Rich white powerful men are allowed to shout at and mock their colleagues in public and <a href="http://www.independent.co.uk/news/uk/politics/order-order-is-it-time-to-bring-rowdy-mps-into-line-and-reform-pmqs-9027619.html">yet remain in charge of us all</a>. Another can physically assault his subordinate and <a href="http://www.bbc.co.uk/news/uk-31989571">maintain much of his public favour</a>.<br />
<br />
Women are <a href="http://nymag.com/scienceofus/2015/10/women-who-show-anger-are-taken-less-seriously.html">taken much less seriously</a> than men if they show anger and while many stereotypes about women of colour are about being submissive and demure, the first sign of anger can flip this on its head; the eager-to-please East Asian becomes the <a href="http://crazycontrollingwomen.blogspot.co.uk/2013/02/what-is-dragon-lady.html">Dragon Lady</a>, the submissive Muslim stereotype becomes a terrorist and so on. Our culture is particularly wary of <a href="http://www.independent.co.uk/voices/why-i-m-absolutely-an-angry-black-woman-a6708876.html">angry black people</a>, particularly <a href="http://www.bbc.co.uk/news/uk-34511532">black men</a>. This makes sense in terms of our imperialist history; it's a good idea to be afraid of anger in people you're trying to control or crush.<br />
<br />
Disabled people are another category who are not supposed to be angry except in very specific contexts: a young white man who has been physically injured during heroic activity (war, fire-fighting, police work etc.) is allowed to express anger if he channels it into successful rehabilitation. Almost anything else and you're heading into disabled villain territory.<br />
<br />
This is one reason that I've struggled to write about anger and loss. Anger is a natural stage of grief and recovery from any kind of loss and trauma – it's okay for anyone to feel angry about their experiences and the injustice in the world. In fact, to be angry about the hurt one has experienced is often a first step in valuing oneself and one's safety.<br />
<br />
For people with chronic illness the problems are fourfold:<br />
<ol>
<li>You're not supposed to be angry. When people admire a sick person, they say, “They're really suffering, but they never complain!” Meanwhile, you're supposed to respond to those around you with gratitude that you're being looked after (even when they're not looking after you) – you're certainly not supposed to get angry with them. If you get angry, you might be left entirely on your own when you literally can't survive without help.
<br /><br />
There are some situations where showing the slightest frustration with someone who has power over your life – a medical professional, an employer you're negotiating access with, someone from the benefits agencies – can have you pigeon-holed as a trouble-maker. This is especially the case for people with mental ill health, who can even <a href="http://www.scientificamerican.com/article/the-truth-about-borderline/">acquire new diagnostic labels</a> for arguing with their doctors.</li>
<br />
<li>Competing with fear, anger might be the most exhausting emotional state to be in. Your body prepares for physical conflict, your heart races, your breathing becomes shallow, your muscles tense and blood is diverted from normally essential things like digesting food. Anger can make a healthy person feel pretty sick. For sick people, the physical tension of anger can cause a lasting increase in pain. It can cause gastrointestinal symptoms that go on for days. And while sadness drains energy like a hole in a bucket, anger pumps it out of you.</li>
<br />
<li>In chronic illness, anger often has no place to go. Sometimes, you're literally stuck in a room either with its source or completely alone, with no way of addressing or venting it. Sometimes it's impossible to even talk about it or write it down.<i> Gobble gobble gobble</i>.</li>
<br />
<li>As well as the anger associated with the multiple losses involved in chronic illness, we have plenty else to be angry about. Disablism, discrimination, poor access, crap from benefits agencies. Unhelpful, sometimes cruel remarks and behaviour from family and friends. Plus misdiagnosis, medical bureaucracy, abuse and negligence are immensely common – not because doctors are a bad bunch, but because having a chronic condition means we see dozens of them over the years and are bound to encounter the occasionally horror. Trouble is that horrific doctors can cause lasting damage. </li>
</ol>
A particular trouble with disablism is that often we experience injustice which simultaneously insults us personally and denies our loss. When the DWP decides we can do things we can't, when folks express envy that we don't have to go to work and when politicians talk about encouraging us to <i>do the right thing</i>, they're not only implying dishonesty, laziness or other character flaws on our part, but they are denying the limitations we have and the things we've lost. For people with conditions that involve suffering, they are denying this suffering.
This is one reason why, unhappily, a lot of disability politics has gone <i><a href="http://blobolobolob.blogspot.co.uk/2007/03/tragedy-model-of-disability.html">Tragedy Model</a></i> over the last six years, with folks arguing for their basic rights, not on the grounds of the intrinsic equality of all people, but on the grounds of compassion.<br />
<br />
<br />
<br />
<div class="western" style="margin-bottom: 0cm;">
A cousin was telling me
about a colleague who had a condition a bit like mine,
although much less severe – this lady was still in full time work,
although it was an increasing struggle. My cousin had explained to his colleague about me and my medical history. He said,
“I told her, it must have been so much easier for you. She's in her
forties with a job, a couple of children and a mortgage, whereas you
were only fifteen and didn't really have anything to lose.”
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Thus I find my entire
identity reduced to that of <i>sick person</i> – all I ever was or am or will
be. This happens quite a lot. In hospitals and doctor's offices, I am
a collection of symptoms. I've currently got my ESA form-filling file
open (not for fun - I have a form to do); 6000 words about the
intimate details of my daily life. And it has nothing about me in it, no whisper of who I am,
what I care about or what I'm good at. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
In the media and the mouths of
politicians, folk like me (especially those of us who have few formal
qualifications and have never had a full-time job) are talked about
as if we are blank people without interests, skills or experiences -
either to be filed neatly out of the way (<i>those who need the most
help</i>) or to be pressed, moulded and trained up into real coloured-in
people (<i>ordinary hard-working families</i>).
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
The temptation is to
respond to this stuff with protests of what might have been – the dominant Tragedy Model narrative; the way we are taught
to tell our stories. My cousin's colleague wasn't going to lose her
children and was unlikely to lose her job – things I had lost before I even had a punt at them.
I might have had a glittering career, made a profound contribution to
the world with whatever path I took, earned a fortune and been
someone my cousin boasted about as opposed to someone whose story can
be shared as an example of a non-life.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But that's a game I'm
bound to lose. For one thing, it's nonsense; I would
have had a very ordinary life, working jobs I liked and jobs I
didn't, with spells of unemployment in between. I know healthy people
who travel through life clutching onto a narrative of <i>what could have
been </i>if only they'd been in the right place at the right time, and
it's both sad and deeply unbecoming – there's always the
implication that such people are somehow better than the average-wage life they actually have, thus somehow better than their
colleagues, their friends and neighbours and most certainly people
like me.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
It's also a story
of disabled life which focuses on the contrast with the non-disabled
life which never happened. And although I'm writing about loss, I am not
prepared to escape the identity of sick useless person who would
never have amounted to anything by signing up to be a non-disabled
person trapped inside the life of a disabled person. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I often see people with
chronic illness on social media declare that illness destroyed or
ruined their life, stole their youth or future - sometimes in the first person plural; our lives, our youths, our futures. I'm very lucky this didn't happen to me. Illness helped shape a life which was different to
the one I had expected. This life features a degree of
ongoing loss and frustration because I am a sick person living in a
disablist world. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
</div>
<div class="western" style="margin-bottom: 0cm;">
When I was fifteen, I
had a hell of a lot to lose and I lost a very great deal. But I'm far more upset now by what I'm losing as a thirty-five year
old. I have friends and family I hardly see - right now my 92 year old Granny is in a bad way and I'm not well enough to visit. Weeks pass when I can't leave the house and there are all kinds of social and cultural events I can't join in with. I'd like to have a dog.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I have acquired talents, expertise and experience which I am
only able to put to limited use. Right now, I don't fantasise about having more money, but I deeply envy people who have jobs that fulfil them and make them feel useful. I know full
well – because I work hard myself – that no activity is
universally pleasurable and fulfilling. But I envy the opportunity to
spend more than a few hours, randomly distributed across the week,
doing what I do well.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And this is okay. I can
and do live with this in much the same way as I live with the loss of
loved ones I long to talk to again. It's a recurring pang, not a
bleeding wound. It doesn't ruin my life.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
However, I struggle
when this loss is denied. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
In social justice
circles, I often see arguments in favour of anger. The thinking goes
like this: women and minority groups are discouraged from showing
anger by the very same culture which gives us all kinds of reasons to
be very angry indeed. David has <a href="https://www.blogger.com/%E2%80%9Dhttp://davidg-flatout.blogspot.co.uk/2016/03/on-being-disabled-and-angry.html%E2%80%9D">written
about it</a> just this weekend. Learning that it is okay to
feel angry can be a first vital step of our resistance.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
This is sometimes
extended into a command to get angry and stay angry, to express
anger. Which is all very well if you're lucky enough to be able to
channel your anger into something useful and productive without
harming yourself or others. It's pretty hopeless if you're lying in
bed, unable to do anything yet unable to sleep or rest properly
because you're seething with rage.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
So I have a different
philosophy. It is okay to feel anger. Anger is a natural and important response to
loss, trauma or injustice - if you try not to feel it, you're likely to run into
trouble.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But having felt that
anger, it really would be wise to seek out a way to open that clenched fist and let it go.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Another problem with
anger – and its sister, guilt - is that it demands legitimacy. We
might feel sad about lots of things, and sometimes feel foolish for
feeling sad, but with anger, we can repress it because we think we're
wrong to be angry, or get lost in it because we have a right be
angry; someone or something deserves our anger, and us being angry is
just.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But other people don't
live in our hearts; nobody is punished by our anger or comforted by
our guilt.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Meanwhile, the
behaviours we adopt to cope with anger can be habit-forming and
eventually dangerous. Various forms of explosive behaviour can cause
an addictive release of endorphins, including things we do to
ourselves like self-harm, starvation or over-exercise, as well as
things we might do to other people and objects. Ranting on the
internet at nobody in particular can be a fairly benign way of
releasing all this unhelpful adrenaline, but it can do the same
thing.<br />
<br />
<div class="western" style="margin-bottom: 0cm;">
All angry behaviours are likely to escalate. You know that thing about how swearing is a great painkiller? Well, that's true, but only if you don't usually swear and you're not often in pain. If you're always stubbing your toe and responding with elaborate blasphemy and curses, they won't be working too well – you have to swear harder, louder and more disgustingly, in order to have any effect.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<br />
<div class="western" style="margin-bottom: 0cm;">
</div>
<div class="western" style="margin-bottom: 0cm;">
</div>
<br />
<div class="western" style="-webkit-text-stroke-width: 0px; color: black; font-family: 'Times New Roman'; font-size: medium; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: normal; margin-bottom: 0cm; orphans: auto; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: 1; word-spacing: 0px;">
<div style="margin: 0px;">
Behaviours don't actually have to feel good in order to become habits; they just have to provide relief. </div>
</div>
<br />
This is why Twitter is as it is - of course, Twitter is awash with love and kindness, but there are folk about, of all stripes, at all points on every political spectrum, who are permanently pissed off. Many of those people have something very real and horrible to be angry about, but without a break from it, it's only going to get worse.<br />
<br />
When I used to belong to illness-specific support groups, I saw the same; some folk were angry and supported one another in anger to the extent that they believed that their illness was by far the most stigmatised, that people without their diagnosis couldn't understand them, that some people <i>with </i>their diagnosis were giving the others a bad name by having different kinds of symptoms and limitations. Some wholeheartedly believed that other people's willful neglect was keeping them ill; that if only enough attention was paid to their condition, a cure would have been found years ago. None of these people had had an easy time or been treated with the full respect and care they deserved and for a few, the actions of others had undoubtedly damaged their health. However, the belief that other people have ruined your life (because such people did see their lives as ruined) is pretty much impossible to resolve.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
<br />
<br />
It's going to be recurring theme in these posts about loss, but the disability rights movement helped me stop being angry with myself. Understanding the socially-constructed nature of disability doesn't stop me wishing I had less pain and more energy, but my body is off the hook in some major respects: I would love to be able to walk about, but the mere fact of having to move around on wheels should not mean I'm profoundly limited on where I can go and what I can do. Meanwhile, to operate with any sense of blame and innocence when it comes to ill health is <a href="http://blobolobolob.blogspot.co.uk/2011/08/disability-hierarchy-3-only-yourself-to.html">to play into hierarchies</a> which oppress us all.<br />
<br />
It helped a lot when I stopped being around angry people. To avoid other people's anger altogether would be to avoid anyone in pain or having a crap time and I don't mean that at all. But for a long time, I was attracted to misanthropes. I didn't hope for love (or trust it, because it was always there somewhere) so I sought toleration; I was attracted to people who hated everyone but begrudgingly tolerated me. It felt like the safest kind of special status. Thus I lived with domestic violence for over ten years, with someone who was even angrier with me than I was.<br />
<br />
However one great lesson I learned from the aftermath and recovery from that is about trauma. Trauma victims and survivors frequently blame themselves for what they've experienced because the psyche abhors helplessness; it is far easier, psychologically, to take on responsibility for things that were far beyond your control than to admit to yourself that you had no real choice. This is evolution; organisms that maintain undying faith in their power to avoid or escape perilous situations are more likely to survive.<br />
<br />
Of course, in adult abusive relationships, there are choices, but greatly diminished ones. In illness - also a traumatic business - there are choices, but again, these are diminished. You can't see what's ahead. You can't stop the world. You can never avoid risk. Your health is complicated and sometimes one aspect must take a hit on behalf of another. Some things matter more than health.<br />
<br />
But most of all, again from listening to others on disability rights, I learned that my health is a morally neutral fact. If I am less well, it matters only as much as it matters to me. I can only let anyone down if I make a promise and choose the day before my presence is needed to experiment with the unicycle. This is not something I often do.<br />
<br />
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Managing anger with things outside myself is all about identity. We talk about identity a lot, not because it makes us feel special or interesting, because these are things others reduce us to and we wish to resist this reduction. Disengaging from these identities, (insisting, "I don't consider myself disabled!")<i>, </i>just doesn't work for most of us. However, because we find ourselves reduced to a disabled person, a wheelchair user, a benefit claimant, a psychological services user and/ or a person with chronic illness, it's important to hold onto everything else we happen to be.<br />
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
So, there are three things I try to remember about all the crap we receive as people with chronic illness:
<br />
<ol>
<li>I'm not alone in this experience, even if I'm alone at that moment in time. Someone else has been through this. Some experiences (like having trouble with benefits agencies) are almost universal. Some experiences come down to tremendous bad luck. Some people are victimised because of a combination of attributes which our culture struggles with, e.g. having a mental illness <i>and</i> a physical impairment, <i>and</i> being working class, a person of colour, LGBT, fat etc.. </li>
<br />
<li>This crap is all about other people, fear and power, and the systems they create. Discrimination is very rarely motivated by conscientious belief. The nonsense disabled people have from benefits agencies is not about genuine mistrust (although that's how it manifests) – they simply wish to maximise the number of people who, overwhelmed or disheartened, will give up before they get the correct award. Politicians create narratives about hard working tax-payers' and benefit scroungers in order to distract from the origins of our economic problems. Right wing politicians are sometimes very good at advocating for their constituents with benefit problems – people can and often do believe two things at once.
<br /><br />
Street harassment, the bullying remarks of colleagues, family and other acquaintances are mostly about power and fear. These people are bullies (whether they do it all the time or once in a blue moon) and the issue is about them, their insecurities and anxieties. They say stupid things relating to our health because they can - because we live in a culture which treats disabled people as charity cases, demanding proof of our deservingness, legitimising speculation about whether our impairments are exaggerated, badly managed or taken advantage of. </li>
<br />
<li>This stuff is never about who we are. None of us will never be everyone's cup of tea, but people who know and like us will, of course, be largely disinterested in our health, how we manage it, if and how much we work. They will be interested in us, what we're interested in, what we're good at, what we're passionate about. And when I do my own thing, exercise my skills, listen to the music I love etc., I am not anything like the person those bastards want me to be.</li>
</ol>
None of this is to minimise the scale of injustice – all these things applied to the disabled people entering the first gas chambers, along with everyone else who ever ended up being abused, tortured or killed for some aspect of their identity. The fact that prejudice is rarely authentic – that is, it is rarely arrived at through any kind of conscientious rational thought process – doesn't make it any less dangerous.
This is in no way a sticks and stones argument. Sometimes we have no choice but to fight this crap. Other times we have to get away from it as soon as possible.<br />
<br />
However, the more we keep hold of ourselves - our best complicated selves with our passions and talents and foibles and that birthmark that looks like one half of Jedward (but which, you wonder, but which?) - the better equipped we are to escape being utterly consumed by the rage.</div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com2tag:blogger.com,1999:blog-10557263.post-16188462504368546552016-01-12T10:40:00.002+00:002016-01-12T10:40:41.115+00:00On Loss & Chronic Illness - Denial<i>Content warning for brief references to self-harm, discussion of bereavement and psychological abuse.</i><br />
<i><br /></i>
I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:<br />
<audio controls="">
<source src="https://archive.org/download/denial_201601/denial.mp3"></source>
If you cannot see the audio controls, your browser does not support the audio element
</audio><br />
<br />
For the first two years
I was sick, I wasn't in denial so much as ignorant then optimistic.
My health was up and down, so I assumed that very soon, things would
pick up, and up and up and up. All the strategies I was given were
about resisting my illness. <i>Do as much as you can. Keep going. Have a
go, even when it hurts. Stay positive.
</i><br />
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
By the third year, it
had gone on too long. The idea that I would not be going to
university at the same time as my peers was unthinkable. It wasn't
that my academic career had ever been central to my identity before
then, but all my other identities had dropped away. My greatest passion - acting - was now impossible. My role in all friendships and
within the family had greatly diminished. I couldn't sing more than a
few lines. I couldn't make art. I couldn't write stories. I was
struggling even to read.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
All I had left – and what my parents were most worried about, the one thing, apart from my health, that others asked me about – were my studies. I didn't have anyone breathing down my neck on this, but I felt an immense pressure. If I stayed sick, I was going to let everyone down.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Here are some
ridiculous things I did in that third year:</div>
<div class="western" style="margin-bottom: 0cm;">
</div>
<ul>
<li>I went from studying a
single GCSE to trying to cram two A-Levels into one year. If you're
not familiar with the English and Welsh education system, that's increasing my workload by about five times, without any improvement in health.</li>
</ul>
<ul>
<li>I began to write the
story of how I got better. In the past tense. When writing anything was a tremendous effort. Which is why I only used up the first few pages of the
lovely new notebook I'd chosen to write in. Such a waste!</li>
</ul>
<ul>
<li>Most ridiculously, I
asked my parents for a new bicycle for my eighteenth birthday. Before
I was ill, I used to cycle all over the place. I'd had a few bikes
before, but never a new one and I had absolutely never bought or
asked for anything which I didn't then use. Thus I reasoned, my
capacity to balance on a bicycle seat and peddle with my malfunctioning legs
would just have to improve accordingly.</li>
</ul>
<div class="western" style="margin-bottom: 0cm;">
All this may sound
daft, but I want you to imagine this in a bad movie. A sick girl who
has significant trouble walking buys a bicycle because she's
determined she'll recover to a point where she can cycle again. She
begins to write the story of how it's going to happen. She takes on all the work she needs to get her into university (Cambridge said they'd
consider me with just two A-Levels, given the circumstances).</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
She <i>has</i> to get better.
She <i>deserves</i> to! She has hope in the face of dwindling odds. This
girl isn't a fool – she's a hero. The final scene of the movie has her either
peddling off into the sunset or with a shot of the pristine unused
bicycle, propped up against her gravestone.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I didn't die, though my
health got much worse and I entered a darker, uglier level of self-doubt. Maybe I was
kidding myself about trying so hard, when really I wasn't? Maybe on
some unconscious level I wanted to be ill? Maybe I didn't want to be
ill but a part of me was making myself ill just to spite myself and
cause distress to everyone around me? By this point, I was cutting
myself and stockpiling meds. Soon after, I got together with my
first husband, who hurt me even more.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
.......<br />
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
On the 26<sup>th</sup>
August this year, I will have been ill for twenty years. I'm not upset about that, but I've been thinking about it and want to
write something about loss and chronic illness. I want to use the <a href="https://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model">Kubler-Ross model</a> of coming to terms with loss which, though
imperfect, covers all the bases; the process of denial, anger,
bargaining, sadness and acceptance.</div>
<div class="western" style="margin-bottom: 0cm;">
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Denial is a psychological defense against very difficult facts, but it's almost impossible to sustain on your own. Usually, when a loved one dies, it can take a few weeks at least to fully comprehend the fact - it's healthy the pain doesn't come at once. But sometimes, someone is informed of a death and simply refuses to believe it. This usually lasts moments, or minutes and occasionally a few hours. Then it shifts, because however gently they are treated, everyone around them is contradicting their belief. Abuse victims can remain in denial about the nature of their relationships for years, because there's either no opposition – other people smile and nod when they say everything is fine – or that opposition is discredited by the abuser.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Meanwhile – and this will be a recurring theme as I write about loss – with chronic illness, you can't just come to terms with these facts in one dose, even it is spread out over months. There will be other losses, relapses and complications, - even remissions that stabilise far below the point you hoped for. There may be points where you realise you have to drop some work you're doing, studies or hobbies, a point you realise you can't have the family you'd like or can't play your preferred role within your family. You'll miss events - weddings, parties, Christenings etc. - which will never happen again. You may lose friends, when your illness gets boring. There are all kinds of ways which you won't get to be the person you wanted to be - not because you chose to be someone else, but because of illness.<br />
<br />
Of course, everyone experiences loss, but the loss associated with illness complicates regular loss - <i>if only I wasn't ill, things would be different, maybe this might not have happened, maybe this would be easier</i>. I wasn't devastated by the death of my maternal grandmother last year, but the fact I was too sick to attend her funeral sent me into a couple of months of emotional disorientation.<br />
<br />
Fortunately, you don't have to mourn for the whole thing at every set-back, but loss is dark pool which settles for a while, only to be disturbed again; sometimes a mere ripple, sometimes a splash.<br />
<br />
After that terrible third year, I never again counted so completely on my health improving, but there would be other times I overestimated my (usually deterioating) health and stamina when I really should have known better, times when I worked on the basis that my good days would be my normal days from now on This would always coincide with desperation, self-doubt and external pressure.<br />
<br />
.........<br />
<br />
As soon as I started to think about writing about chronic illness and the Kubler-Ross model, I noticed how our culture discourages people with chronic illness from getting to that final phase of acceptance. Our culture actively encourages denial (as well as anger, sadness and bargaining especially). As I say, it's almost impossible to maintain denial on your own.<br />
<br />
I generally enjoy my life very much. I'm writing about loss, but loss is part of life and doesn't stop it being mostly great. However, sometimes I'll have this conversation when someone implores me to <i>keep positive</i>. Not that they think I'm not making the most of life, but because I'm not highly invested in the prospect of getting better. I'll hear that I shouldn't “give up” - I should keep hoping for a cure, pestering my doctors for tests and experimental treatments, trying alternative therapies, restrictive diets and so on. I hear this both from other sick people who have got themselves a bit stuck, and from healthy people who really have no concept of how incredibly short life is and how very much shorter life is if you have to rest more than half the day.<br />
<br />
However, I have many advantages when I roll my eyes at this. Meeting the disability rights movement made such a difference; it made my illness personal and private, separated out the things I can attempt to address (physical access, social attitudes etc.) and released me from the sense of obligation to fit our culture's model of a deserving sick person.<br />
<br /></div>
</div>
<div class="western" style="margin-bottom: 0cm;">
Some people are much less lucky and get stuck
on denial, even after years of illness. A few times, I've come across
people who are convinced that they have found the answer and –
understandably, altruistically – wish to share the good news with
other people. In the worse case, I was put in touch with a friend of
a friend, a man in this thirties whose parents were spending<i> twelve
thousand pounds a year </i>on a single nutritional therapy regime. Twelve
thousand pounds – it crossed my mind that even if this
worked and I regained full health, I could probably never earn enough
to pay for it. But of course, it didn't work.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
He'd been on this
regime for a year or so when the therapist used some kind of mystical scanner and declared
that the illness had left his body. Completely cured, his body and
immune system remained weak and just needed building up again (with
this ongoing course of expensive therapy, funnily enough). But as our
conversation progressed, I realised that he hadn't really seen much
improvement at all; this <i>weakness</i> was basically all the symptoms he'd
had before, only with a different explanation.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Someone who has never
encountered this might think such a person would have to be terribly
gullible, foolish and perhaps a little unhinged. He wasn't. He was a
pleasant, sensible father of three who had worked as a teacher before
he was ill. He just couldn't see a life where he didn't get well. Given their financial investment, his family obviously had the same imaginative block. It wasn't that he was pretending to be well - he still wasn't able to work or walk significant distances – but
having been told that he was well, he chose to believe it.
</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
I describe this as the
worst case because, well, <i>twelve thousand pounds a year</i>. But there
have been others and it's always tragic. You generally lose touch
with these people, not because of arguments (you don't argue with this) but
because it becomes impossible for them. How can you face people
around whom you evangelised about a cure, when two or three years
later, you are still demonstrably unwell?</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
But of course, in terms
of stories, our culture loves this stuff. Illness is something to be fought - <i>Beechams</i> will help you fight a cold, David Bowie just lost his battle with cancer. This is all denial; There is no cure for the common cold - if you have anything but a mild cold, you <i>will</i> feel rotten and infect people around you. Whatever courageous attitude Bowie adopted towards his illness, he died because of a great collection of circumstances which amount to bad luck - had he survived, he wouldn't have fought it off, but merely been luckier.<br />
<br />
Hope is a great thing and looking after one's health is entirely sensible.
Placing faith in the impossible (or even the rather unlikely) is a waste of life.</div>
<div class="western" style="margin-bottom: 0cm;">
<br />
.......<br />
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
There's one
more point to be made about denial, which makes it unique among the
phases of grief: other people will try to get in on the act for sinister purposes. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Naturally, some folk do go into denial about the deteriorating health of a loved one.
They desperately want there to be a simple solution, and for things
to go back to normal, so they pretend that's going to happen. This can cause a lot of stress, but it's unlikely to last long. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
However, the very first
thing a person does if they wish to bully, undermine or control any
disabled person, but especially one who is sick with subjective
unseeable symptoms, is to cast doubt on their impairment, speculate
that they could try a bit harder, that their account of things is
inconsistent, that maybe there's a part of them that is seeking
attention. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
And these two things –
someone profoundly distressed about another's state of health, and
someone exploiting the opportunity to exert power over them – can
be easily confused, with disastrous consequences. When friends, family, quack therapists and occasionally even medical professionals get up to that crap, a sick person can be easily dragged into
that very dark and ugly place I described earlier (Is it me? Am I doing this to
myself?).</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
Again, this cruelty is in
our culture. This is what the benefits agencies do – they
endlessly question perception and imply dishonesty in rock solid cases. This is what newspapers do when they complain about scroungers.
People who do this to their own family and friends aren't in the
least bit original, but their message must not be mistaken for love or concern. This is all about power. </div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
My top survival tip –
not just when it comes to chronic illness, but life in general – is
to trust yourself, your feelings and your experiences. This doesn't
mean experiences mean what you think they mean (honestly, it was just
a satellite – if you look at the sky for long enough, you'll see
dozens), or that you should act on all your whims. The mind can play
tricks on you, and you may have irrational thoughts, but you almost
certainly do know roughly what's going on with you.</div>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
<div class="western" style="margin-bottom: 0cm;">
On some level, I knew I
wasn't going to ride a bicycle again any time soon. But I
was trying to defy my own reality. When others attempt to defy your
reality on any matter - not to merely disagree with you, but suggest that what you feel is not what you feel - you need to give them a very wide berth. </div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com2tag:blogger.com,1999:blog-10557263.post-86972943716314418592015-10-27T15:20:00.001+00:002015-10-28T10:33:28.254+00:00Freedom from criticism is quite the opposite to freedom of speech. <div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">Freedom of speech has never been the freedom to speak without consequence. Freedom of speech means freedom from interference, harassment, intimidation, imprisonment or violence. But speech, like anything we do, has real life consequences. There is no freedom of speech if people are allowed to talk and others are not allowed to object to what they've said. </span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">This weekend, famous philosopher, author and university professor Roger Scruton was
relegated to the obscurity of the BBC News website (<a href="http://www.bbc.co.uk/news/magazine-34613855">link to text</a>) and BBC Radio 4 (<a href="http://www.bbc.co.uk/programmes/b06j6byb">link to audio</a>) to
talk about freedom of speech. He seems about to explore the potential ills of criminalising hate speech before meandering in an entirely different direction, concluding. </span></div>
<blockquote class="tr_bq" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">“<span style="color: #404040;">Of
course, we have moved on a bit from the Middle Ages. It is not the
man who is assassinated now, but only his character. But the effect
is the same. Free discussion is being everywhere shut down, so that
we will never know who is right - the heretics, or those who try to
silence them.”</span></span></blockquote>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;">I
was obliged to study Roger Scuton's work as a young philosophy
student, so I feel qualified to translate:</span></div>
<blockquote class="tr_bq" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;">“<span style="font-size: small;">Of
course, we have moved on a bit from the Middle Ages. Outspoken men I
personally relate to don't get assassinated, but instead the views of
other kinds of people are heard alongside ours, which can make us
look ridiculous. Free discussion is everywhere, and views like mine
face powerful and articulate opposition.”</span></span></blockquote>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;">Freedom of speech means that Roger
Scruton should be free to express his views without harassment, intimidation, violence and so forth. He has arguably earned the right to have far
greater access to public platforms - television appearances,
newspaper articles and so on – than someone like me. I might
disagree with pretty much everything he stands for but that's not a
problem – here he is, right now, helping me explain an idea to you. Thanks Rodge! . </span>
</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;">What
Roger Scruton is absolutely not entitled to is to express his views
without criticism. For example, he describes how homophobia was invented (as most
words were at some point) and is used to ruthlessly attack, um, homophobia: </span></div>
<blockquote class="tr_bq" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;">“<span style="font-size: small;">The
orthodox liberal view is that homosexuality is innate and guiltless.
Like the Islamists, the advocates of this view have invented a phobia
with which to denounce their opponents. Deviate in the smallest
matter from the orthodoxy, and you will be accused of homophobia and,
although this is not yet a crime, it is accompanied, especially for
those with any kind of public office, by real social costs. “</span></span></blockquote>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;">And
yet, here is Roger Scruton, on the BBC News website, implying opinions that are already in the public record; to his credit, he overcame much of his earlier prejudice, but he still objects to same-sex marriage or adoption</span>. <span style="color: #404040;">And yet this weekend, he was still being published on the BBC News website in a piece to be broadcast on the radio. When Scruton speaks of “real social costs”, I can only assume his lesbian friend didn't invite him to her wedding.</span></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">(Incidentally, Scruton is the co-author of the article<span style="color: #404040;"> <a href="http://blogs.new.spectator.co.uk/2013/02/same-sex-marriage-is-homophobic/" style="font-style: italic;">Same-sex marriage is homophobic</a>. So he's right about at least <i>some</i> people abusing the word <i>homophobia</i> for the sake of their own particular arguments.)</span></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;">This
is how history works. When I was a kid, homophobic views were widespread and
freely expressed. In 1989, Scruton himself wrote that society was correct in instilling a revulsion of homosexuality in children - some of his contemporaries said and wrote far worse. Section 28, which effectively prohibited the discussion of homosexuality in schools, was not repealed until four years after I had left school. When I was growing up, s</span><span style="color: #404040;">omeone who supported
same-sex marriage had the right to say so – they certainly wouldn't
have been arrested for it - but they would have struggled to get any kind
of platform outside LGBT magazines. Gay and bisexual teachers, let alone people in
positions of more significant power and status were still frequently
closeted. That's <i>real social costs</i>.</span></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;">But our society had an argument and the argument was won. Not that we have achieved consensus, but most people either support or are indifferent towards same sex marriage. Conscientious people like Scruton have found at least some of their prejudice to be intellectually unsustainable. This is
because gender doesn't make any moral difference to sex, romantic
partnership or the creation of families. Homophobia – including, violent homophobia – still exists within our culture, although it is much more often subtle and implicit. Scruton's views are in the minority. He still has a very loud voice.
He just can't expect such a great applause whenever he uses it. </span>
</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;"> </span>
</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;">To say so isn't silencing him. </span><span style="color: #404040;">To bombard him with abusive messages would be silencing. To threaten his peace or his person
would be silencing. To hack the BBC News website and take down his
article would be silencing. He's not being silenced. </span></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;">Scruton may well have been harassed about his views, but he doesn't describe this. He doesn't describe any specific negative effect of speaking out until he arrives at Nobel-prize winning biochemist Tim Hunt. Like the rest of us, Hunt was not entitled to say whatever he liked without his words having consequences.</span><span style="color: #404040;"> His character was not
assassinated – he made a fool of himself, just as surely as if he had turned up to work drunk in his underpants. Nobody accused him of a
crime or of any underhand activity other than undermining the status
of women in science with sexist jokes said in public.</span></span><br />
<span style="color: #404040; font-family: inherit;"><br /></span></div>
<span style="font-family: inherit;">"A lifetime of distinguished creative work has ended in ruin." is a wild exaggeration; the chap resigned at the tender age of 72, he may well work again and few history books will record anything but his contribution to science. We're still talking about it now because it happened this year and stirred up a lot of existing frustration about the treatment of women in science. To my knowledge, Hunt was not harassed or threatened, but merely laughed at.<i> A lot</i>. He had claimed female colleagues kept falling in love with him. It's no hanging offence, but no-one can say that and not look like a prong.
</span><br />
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;">It's
funny Scruton's piece should be published in a week that a very
different heretic (and one who has done far more to earn that title)
Germaine Greer made a stand for the voiceless by appearing on fringe
news outlet, BBC Newsnight, complaining about a petition to stop her
talking at Cardiff University, because of her widely published
transphobic views. This was a petition – people exercising their own freedom of speech - asking that she should be <a href="https://en.wikipedia.org/wiki/NUS_No_Platform_Policy">no-platformed</a>. Student Unions are not obliged to provide platforms and audiences for anyone who feels they have something to say.</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;">Cardiff University said they did not endorsed Greer's views but would not stop her speaking.</span><span style="color: #404040;"> </span><span style="color: #404040;">Greer decided not to go. She would have been met by a far smaller audience than
that of Newsnight or the many other news outlets who have published
both her complaints about Free Speech, as well as her hateful remarks about
transgender women in the last few days (including the front page of
the BBC News website, up and left a bit from Scruton).</span></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #404040;">Greer has the right to say what she likes, but not wherever she likes. Nobody has, but Greer has far more opportunities to air her views to huge numbers of people than I ever will. </span><span style="color: #404040;">What Greer has experienced is, ironically, exactly the same minimal harm she claims to be committing against transgender people when she denies their very existence; </span><i style="color: #404040;">hurt feelings</i><span style="color: #404040;">. </span></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;">The
fact that people with as diverse views as Greer and Scruton could be
making these complaints and so loudly, when nobody who objects to
their views is being heard (Show me a prominent article about the
ills of homophobia this weekend. Where is the interview with <a href="https://twitter.com/RachMelhuish">Rachel Melhuish</a> who set up the petition against Greer's talk?),
suggests something about the way freedom of speech currently works in
our culture.</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #404040; font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">So let's talk about actual
silencing. I write quite a lot about discriminatory language and the
media and much of this comes down to <i>people shouldn't say that</i>.
Language is tremendously important. The way women, men and minorities are
spoken about and represented is tremendously important.</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">When I say, “People shouldn't say that.”
I absolutely mean it. This isn't the same as saying "People shouldn't <i>be allowed</i> to say that." let alone "People should be arrested for saying that." </span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">However, people
should be criticised for saying foolish things - this is part of freedom of speech. Sometimes, public
figures should lose their jobs over the things they say – the rest
of us run exactly the same risk and are likely to meet with far less
tolerance. However, fundamentally, I want to win these arguments. I
want to help persuade folk to treat others as they would like to be
treated.</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">This has limits and those limits should be obvious. <span style="color: #333333;">I
didn't think very hard when I became the Goldfish with my painting of
a goldfish as an avatar, but over the years I've become acutely aware
of the way that I escape the abuse that other women with feminine
handles and photos of themselves routinely experience when they talk
about any political issue. Young women, women of colour, women
pictured wearing headscarves and trans women are targeted with
particular bile and there's reason to believe <a href="https://samambreen.wordpress.com/2014/06/13/justice-is-for-white-people/">they have less recourse to justice</a>.</span></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><span style="color: #333333;">Harassment
and abuse are always unacceptable and should be far more vigorously
prosecuted. These things force victims to change their behaviour and
create a genuine obstacle to speaking out. For some minorities –
particularly trans people and Muslim women – the high probability
of receiving abuse any time they draw attention to themselves may be
enough to keep them quiet. </span>
</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="color: #333333; font-family: inherit;">Criticism - even unreasonable, lazy or incoherent criticism - doesn't have this effect. Nobody wants to be called a bigot, and Scruton has personally demonstrated that not everyone uses words like homophobia (or racism, sexism etc.) in a consistent and coherent way, but being told one's speech is prejudiced cannot be compared to threats
of violence, personal and sexualised insults and so on.</span></div>
<div class="western" style="margin-bottom: 0cm;">
</div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Meanwhile, this last week, while Scruton and Greer were speaking without opposition in the national press, it was announced that <a href="http://www.independent.co.uk/news/uk/crime/terror-offenders-to-be-barred-from-working-with-children-a6698986.html">there will be a new register</a>, like the Sex Offenders Register, which would prevent anyone with a conviction or civil order for "extremism" from working with children or young people. Nobody is clear quite what "extremism" is. We already have disasters like the <a href="http://www.theguardian.com/uk-news/2015/mar/09/anti-radicalisation-prevent-strategy-a-toxic-brand">Prevent Strategy</a> which basically monitors young Muslims for signs of alienation or radicalisation, including what they say in public. And earlier this month, not at all famous <a href="http://www.theguardian.com/uk-news/2015/oct/06/london-woman-charged-over-alleged-killallwhitemen-tweet">Bahar Mustafa was charged</a> for offenses apparently relating to her use of the hashtag #killallwhitemen on Twitter*, while the very famous Katie Hopkins, who wrote of refugees as "cockroaches" who should be gunned down or drowned before they reached Europe, faces no criminal action. </span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">Obviously, I don't mean to suggest that we should only care about certain kinds of silencing, or extreme cases where people are menaced into silence. Nor do I believe that one has no right to complain of ill treatment if someone else is experiencing worse (someone always is). However, I do think it is worth observing that there are patterns in the people and opinions which do get sidelined, shouted down or even draw the attention of the criminal justice system.</span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">Freedom of speech is a vital aspect of a free society and something we may always have to fight for. To reduce it to <i>the freedom for powerful people to express their prejudices without meeting the disapproval and criticism of others </i>only distracts from and undermines the real battle taking place. </span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;"><br /></span></div>
<div class="western" style="margin-bottom: 0cm;">
<span style="font-family: inherit;">* The nature of this kind of case is that the press cannot report exactly what Bahar Mustafa said that was so offensive, given that it is being described as "grossly offensive" in the charges. It may be that she did say something absolutely outrageous (#killallwhitemen is very difficult to take seriously).</span></div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com3tag:blogger.com,1999:blog-10557263.post-30841733489499895492015-09-30T11:05:00.000+01:002015-09-30T11:05:05.486+01:00Who would play you in the movie of your life?This conversational game, common among young teenagers, had two separate sets of rules for me. At school, the game was an exercise in vanity and flattery; which actor was basically the older, more gorgeous version of you? If you struggled to name one, friends would make flattering suggestions; being a tall, brown-haired white girl, I should naturally have been played by Julia Roberts. Among my youth theatre friends, the game was about identifying which actor (if any) had the colossal talent required to depict the full melodrama of your life. Few have such a range, darling! A young Diana Rigg might have pulled it off, but barely!<br />
<br />
I still think about this game occasionally, when I reflect on the fact that people in movies never look anything like me. Foz Meadows recently described this as <a href="https://www.blogger.com/%E2%80%9Dhttps://fozmeadows.wordpress.com/2015/08/24/the-perfect-hair-problem-women-in-visual-media/%E2%80%9D"><i>The Perfect Hair Problem</i></a>; women on screen vary so little in their appearance that they usually have the very same hairstyle, and that hairstyle remains perfect, come rain, shine or zombie apocalypse. Women on screen are overwhelmingly white, thin and without visible impairments, even more so than men. There are more transgender women than trans men on screen, but these numbers are minute and of course, they're often not played by actual trans women.<br />
<br />
Women on screen are also overwhelmingly young. Even female characters who you'd expect to be middle-aged in real life - experts, senior managers and politicians, high-ranking police officers, the mothers of adult characters and the partners of middle-aged men - are played by inexplicably young women. Angelina Jolie is just a year older than Colin Farrell but was cast as his mother in <i>Alexander</i>. However, often middle aged women characters who might exist (especially mothers), have conveniently died before the start of the film. Occasionally - although the practice is far more common in the theatre – a middle aged or older woman might even be played by a man (the <i>St Trinians </i>movies, <i>Hairspray</i>, <i>Orlando </i>etc.).<br />
<br />
A big part of the problem is about story-telling. You notice things like perfect hair far more when a character is actually written like a real person who would not have perfect hair. In the movie of my life, there's only one woman who has perfect, long, shiny and mechanically-straightened hair and even then only some of the time. Often, however, I find myself watching a movie, understanding that the (only significant) female character is not a character at all, but an object, <a href="http://sequart.org/magazine/34150/the-bechdel-test-and-a-sexy-lamp-detecting-gender-bias-and-stereotypes-in-mainstream-comics/">a sexy lamp</a>, <i>the girl</i>. It's not that she must be beautiful in a very particular way because she is eye-candy so much as the fact she needs to look like that so we recognise what she is. She can't be black or a wheelchair-user, not because audiences won't find such a woman as attractive but because <i>the girl</i> is never black, let alone a wheelchair-user. If this woman just wore glasses and kept them on her face throughout a movie (as opposed to taking them off as she <i>comes out of her shell</i>), it might start a revolution.<br />
<br />
When we talk about the visual representation of minorities and women, the issues of story-telling, casting and the cultural baggage that goes with it are intermingled. One of the reasons folk were so upset about <a href="http://www.slate.com/blogs/browbeat/2015/01/20/the_theory_of_everything_and_disability_why_eddie_redmayne_shouldn_t_get.html">Eddie Redmayne’s casting as Stephen Hawking in <i>Theory of Everything</i></a> was that, even before the film was made, it was obvious both what kind of movie it would be and how it would be received. Redmayne was destined for critical acclaim, not for his courageous attempt to portray extraordinary genius, but for putting his able-bodied self into the position of a wheelchair-user. It didn’t really matter how well he imitated Hawking’s physical mannerisms because nobody really cares – he just had to look uncomfortable enough, disabled enough, and he was bound to be lauded. In Redmayne’s next biopic, he’s playing transgender pioneer <a href="https://en.wikipedia.org/wiki/Lili_Elbe">Lili Elbe</a>. Rinse and repeat.<br />
<br />
Although there’s no serious argument for casting actors with the same sexual orientation as their characters, the pattern is the same with gay male characters, as with transgender women and disabled men: Non-disabled, cisgender, straight white men routinely play gay men, disabled men and transgender women in epic, often tragic movies which invite massive critical acclaim. <i>The Fast Show</i>’s parody of <i>Forest Gump</i> is almost twenty years old but the same movie is still being made right now:<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/0TS79NflIzA" width="420"></iframe><br />
<br />
Meanwhile, the most common objection to casting an actor with visible impairments to play a disabled role is that the character has to be non-disabled for some scenes, as was the case with <i>Theory of Everything</i>. This is only because almost every damn story with a disabled protagonist features the acquisition of impairment as a central dramatic narrative. Disability <a href="http://www.theatlantic.com/entertainment/archive/2014/07/why-disabled-characters-are-never-played-by-disabled-actors/374822/">remains a metaphor for film-makers</a>, rather than an incidental aspect of a character's life. I hope that, come an occasion for my biopic to be made, my getting sick will be the least interesting event of my life. It's already fairly low on the list.<br />
<br />
Casting can't be about perfect authenticity. In the film of my life, someone with my particular condition would struggle to act in a film - I certainly couldn't play myself and my impersonation is seamless. However, this is about the representation of disabled people as a social group. We're all invisible for the same reason and the visibility of one of us benefits us all. As well as everyone else, who gets to see us as people rather than symbols.<br />
<br />
Rigorous realism only matters when realism means representation. When they cast 5’7” Tom Cruise as Jack Reacher, a character who is 6’5” in the books, movie-makers weren’t contributing to an ongoing under-representation of tall men (in fact, <a href="http://www.imdb.com/list/ls000090719/">very tall men are over-represented</a>, while very-almost-average height Cruise is widely mocked for being a short-arse). Fans of the books may have a complaint but tall men do not. However, when the movie <i>Stonewall</i>, supposed to be depicting the Stonewall Riots, <a href="http://www.vanityfair.com/hollywood/2015/09/stonewall-review-roland-emmerich">invents a macho young white cisgender male hero</a> and sidelines the real-life trans women, lesbians and femme gay men of colour, well that's a scandalous erasure. See also from this year, <i>Aloha</i>, a film set on Hawaii with only white protagonists, including <a href="http://www.theguardian.com/film/2015/jul/17/emma-stone-admits-her-casting-in-aloha-was-misguided">a white woman</a> who, conveniently, is not supposed to look like she possesses the Chinese and Pacific Islander heritage of her character.<br />
<br />
One of the problems we have is that campaigns around representation fail to take an intersectional approach. I often see articles about the casting of non-disabled actors in disabled roles which insist that nobody would stand for this being done to people of colour - "blacking up" is a thing of the past. And yet, routinely, characters of colour are either erased in novel adaptations or historic dramas or played by actors with much paler skins. <span style="line-height: 115%;"><a href="http://screenrant.com/exodus-gods-kings-race-controversy-ridley-scott/">Ridley Scott defended his <i>Exodus: Gods and Kings</i></a> (a film where Ancient Egypt is run by white people);</span><br />
<blockquote class="tr_bq">
"I
can’t mount a film of this budget, where I have to rely on tax
rebates in Spain, and say that my lead actor is Mohammad so-and-so
from such-and-such, I’m just not going to get it financed."</blockquote>
In
other words, it’s a racist world, so even massively powerful, rich
and influential film-makers are compelled to be racist. We hear the same arguments made about the casting of all marginalised people. These actors are not well-known because they're not often cast so we can't cast them now because they're not well-known.<br />
<br />
(Please read this by <a href="http://www.gq.com/story/muslim-american-typecasting-hollywood">Jon Ronson speaking to Middle-Eastern American actors</a> about their chronic type-casting as terrorists - it is both hilarious and tragic.)<br />
<br />
Frankly, any deviation from the perfect-haired women and more various but still rather samey men would be of benefit to the majority of us who don't see ourselves on screen. Whenever I see prominent women of colour, short, fat, trans or older women in movies, I feel better - any kind of diversity suggests there might be room in this visual universe for me. When I see prominent visibly disabled women on screen (once every five years or so), I feel more like a real person.<br />
<br />
In this post I've concentrated on film because television does much better. Television increasingly features <a href="http://www.thefword.org.uk/2015/08/authenticity-in-a-sci-fi-world/">transgender people in trans roles</a>, far more incidental disabled characters and greater ethnic diversity than you'll see at the cinema. British television especially features a far more diverse variety of women fulfilling a variety of roles. It's not a perfect medium, but it demonstrates time and again that audiences don't switch off when a drama doesn't look like every other drama before it.The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com2tag:blogger.com,1999:blog-10557263.post-44070354372806849902015-05-01T00:00:00.000+01:002015-06-28T13:23:13.164+01:00Blogging Against Disablism Day 2015<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLaiWylev8kYb2uaHnSvvEAFESDZU_dYupCF8ds8bWaThzrnbfuAgJcap0jA66K9fN3LkRuu4JVvV3lRKrGQOxBERsH5BQwnvUCIl6BqzxUTP1X7Mh6EAdAYGI3dz4iJYbhyphenhyphenEU/s1600-h/badd02.gif"><img alt="Blogging Against Disablism Day, May 1st 2015" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLaiWylev8kYb2uaHnSvvEAFESDZU_dYupCF8ds8bWaThzrnbfuAgJcap0jA66K9fN3LkRuu4JVvV3lRKrGQOxBERsH5BQwnvUCIl6BqzxUTP1X7Mh6EAdAYGI3dz4iJYbhyphenhyphenEU/s320/badd02.gif" id="BLOGGER_PHOTO_ID_5053607588318923298" style="float: right; margin: 0pt 0pt 10px 10px;" title="Blogging Against Disablism Day, May 1st 2015" /></a>Welcome to Blogging Against Disablism Day 2015!<br />
<br />
Thanks very much to everyone who helped to spread the word and to those who have already taken part. <br />
<br />
If you have a post for Blogging Against Disablism, <a href="https://www.blogger.com/comment.g?blogID=10557263&postID=4407035437280684990">please leave a comment</a> including the URL (web address) of your post and<b> the catergory your post fits best. </b>Please also link back here, wherever possible (we're at http://tinyurl.com/BADday2015).<br />
<br />
We'll carry on updating this post as any late-comers arrive. We've also been posting links to every blog using the Twitter stream <a href="http://twitter.com/" target="_blank">@BADDtweets</a> and these will automatically be posted onto our <a href="https://www.facebook.com/BloggingAgainstDisablismDay" target="_blank">Facebook Page</a>.<br />
<br />
<b>Round-up Posts</b><br />
<br />
Alice Wong: <a href="https://storify.com/SFdirewolf/tweets-from-badd2015?utm_campaign=&awesm=sfy.co_s0NLn&utm_source=t.co&utm_content=storify-pingback&utm_medium=sfy.co-twitter" target="_blank">Tweets from #BADD2015</a><br />
<br />
<div>
<br />
<span style="font-size: 21px;">Blogging Against Disablism 2015</span><br />
<br />
<table><tbody>
<tr valign="top"><td><b>Employment</b><br />
<span style="font-style: italic;">(Disability discrimination in the workplace, recruitment issues and unemployment). </span><br />
<br />
Smiffy's Place: <a href="http://www.smiffysplace.com/blogging-against-disablism-day-my-annual-rant-badd2015/" target="_blank">My Annual Rant</a><br />
<br />
<br />
<b>Education</b><br />
<i>(Attitudes and practical issues effecting disabled people and the discussion of disability in education, from preschool to university and workplace training.)</i><br />
<br />
Academic Editing Canada: <a href="http://www.academiceditingcanada.ca/blog/item/314-badd-ableism-academia-sf" target="_blank">Ableism, Academia & Science Fiction </a><br />
AZ is Amazing: <a href="http://azisamazing.blogspot.co.uk/2015/05/blogging-against-disablism-day-2015-my.html" target="_blank">My ideal classroom </a><br />
Deaf Student: <a href="https://deafstudent.wordpress.com/2015/05/01/badd-disabilism-in-higher-education/" target="_blank">Disabilism in Higher Education </a><br />
Limits Not Included: <a href="http://limitsnotincluded.blogspot.co.uk/2015/05/prove-it-post-for-badd-2015.html?m=1" target="_blank">Prove it </a><br />
Paginated Thoughts: <a href="http://kpaginatedthoughts.blogspot.co.uk/2015/05/blogging-against-disablism-day-2015-one.html" target="_blank">One of the Lucky Ones? </a><br />
The Autistic Anthropologist: <a href="http://theautisticanthropologist.tumblr.com/post/117882849085/blogging-against-disablism-day-2015" target="_blank">Blogging Against Disablism Day 2015 </a><br />
Turtle Is A Verb: <a href="http://turtleisaverb.blogspot.com/2015/04/internalized-ableism.html" target="_blank">Internalized Ableism</a><br />
Yes, That Too: <a href="http://yesthattoo.blogspot.com/2015/05/late-for-blogging-against-disableism-day.html" target="_blank">Late for Blogging Against Disableism Day</a><br />
Friendly Crips & Our Friends: <a href="http://friendly-crips.livejournal.com/246750.html">So you want to inspire young people? If you're disabled, don't bother</a><br />
<br />
<br />
<b>Other Access Issues</b><br />
<span style="font-style: italic;">(Posts about any kind of access issue in the built environment, shops, services and various organisations. By "access issues" I mean anything which enables or disenables a person from doing what everyone else is able to do.)</span><br />
<br />
<br />
A Barnsley Historian's View: <a href="http://barnsleyhistorian.blogspot.co.uk/2015/05/renewing-my-disabled-aka-concessionary.html" target="_blank">Renewing my Disabled aka Concessionary Bus Pass (or not?) </a><br />
Andrea Shettle's Tumblr: <a href="http://andreashettle.tumblr.com/post/117847148723/access-is-not-a-luxury" target="_blank">Access is NOT a luxury </a><br />
Beguine Again: <a href="http://beguineagain.com/2015/05/03/we-interrupt-this-story-to-blog-against-disablism/" target="_blank">We Interrupt This Story to Blog Against Disablism </a><br />
Crippled, Queer, Anglo-European Ranter: <a href="http://crippledqueeranglo-europeanranter.blogspot.com.es/2015/04/disablism-in-benalmadena-photo-doc-for.html" target="_blank">Dis/Ablism in Benalmádena</a><br />
The World of Accessible Toilets: <a href="https://toiletaccess.wordpress.com/2015/04/29/why-dont-nhs-hospitals-have-accessible-toilets/" target="_blank">Why don't NHS hospitals have accessible toilets?</a><br />
<br />
<br />
<b>Definition and Analysis of Disablism/ Ableism</b> <br />
<br />
Most Usually Unusual: <a href="https://sarahkperkins.wordpress.com/2015/05/01/blogging-against-disablism-15-the-acceptable-ism/" target="_blank">The “Acceptable” ism</a><br />
The Glitter Notebook: <a href="https://theglitternotebook.wordpress.com/2015/05/02/blogging-against-disablism-day-2015-why-the-word-disablism-should-be-in-the-dictionary/" target="_blank">Why the word “disablism” should be in the dictionary </a><br />
<br />
<br />
<b>The Language of Disablism</b><span style="font-style: italic;">(Posts about the language which surrounds disability and the way that it may empower or disempower us.)</span><br />
<span style="font-style: italic;"><br /></span>
<br />
Diary of Mister Goldfish: <a href="http://mister-goldfish.blogspot.co.uk/2015/05/the-god-of-sleep.html" target="_blank"> The God of Sleep</a><br />
<br />
<br />
<span style="font-weight: bold;">Disablism Interacting with Other 'Isms'</span><br />
<i>(Posts about the way in which various discriminations interact; the way that the prejudice experienced as a disabled person may be compounded by race, gender, age, sexuality etc..)</i><br />
<br />
allthesoftplaces: <a href="https://allthesoftplaces.wordpress.com/2015/05/01/thoughts-on-the-intersections-of-capitalism-ableism/" target="_blank">Thoughts on the Intersections of Capitalism & Ableism</a> <br />
A Very Bitey Zebra: <a href="https://biteyzebra.wordpress.com/2015/05/01/blogging-against-disablism-day-2015-look-left-look-right-then-look-left-again/" target="_blank">Look left, look right, then look left again </a><br />
Radical Neurodivergence Speaking: <br />
<a href="http://timetolisten.blogspot.co.uk/2015/05/badd-2015-blacklivesmatter-freeolinka.html" target="_blank">BADD 2015: #blacklivesmatter, #freeolinka, & intersectionality reminders </a><br />
The F-word: <a href="http://www.thefword.org.uk/blog/2015/05/blogging_agains_2" target="_blank">Gender, health and responsibility</a><br />
<br />
<a href="http://www.blogistan.co.uk/blog/mt.php/2014/05/01/dudes" target="_blank"></a>
<br />
<b>Disablism in Literature, Culture and the Media</b><br />
<br />
A Writer in a Wheelchair: <a href="http://writerinawheelchair.co.uk/2015/05/third-time-lucky/" target="_blank">Third Time Lucky</a><br />
Never that Easy: <a href="http://neverthateasy.blogspot.co.uk/2015/05/badd-2015-where-i-talk-about-fanfiction.html" target="_blank">Where I talk about Fanfiction and Comics, a lot, and you probably roll your eyes </a><br />
People Aren't Broken: <a href="http://www.peoplearentbroken.com/?p=611" target="_blank">CripFace</a><br />
The Note Which Do Not Fit: <a href="https://thenoteswhichdonotfit.wordpress.com/" target="_blank">Characters with Disabilities in the Condor Trilogy</a><br />
This ain't living: <a href="http://meloukhia.net/2015/05/blogging_against_disablism_day_2015_oscarbait/" target="_blank">Oscarbait </a><br />
Words of Realms: <a href="https://wordsofrealms.wordpress.com/2015/05/01/blogging-against-disablism-day-doctor-who-and-disability/#more-304" target="_blank">Doctor Who and Disability </a><br />
yetanotherlefty: <a href="https://yetanotherlefty.wordpress.com/2015/05/01/dressing-while-disabled-for-badd/" target="_blank">Dressing While Disabled</a><br />
<br />
<br />
<b>History</b><br />
<br />
Disability Studies, Temple U.: <a href="http://disstud.blogspot.co.uk/2015/05/badd-2015-wikipedia-against-disablism.html" target="_blank">Wikipedia Against Disablism, Part 2</a><br />
<br />
<br />
<b>Relationships, Love and Sex</b><br />
<br />
Kink Praxis: B<a href="https://xanwest.wordpress.com/2015/05/01/being-a-disabled-top-in-kink-community/" target="_blank">eing a Disabled Top in Kink Community</a><br />
<br />
<br />
<b>Sport</b><br />
<br />
Black Telephone: <a href="http://www.blacktelephone.com/2015/05/just-keep-swimming/" target="_blank">Just Keep Swimming</a><br />
<br />
<br />
<b>Other</b><br />
<br />
Ballastexistenz: <a href="https://ballastexistenz.wordpress.com/2015/05/01/to-all-the-children-in-severe-pain-tonight-badd-2015/" target="_blank">To All The Children In Severe Pain Tonight </a><br />
Murder of Goths: <a href="https://murderofgoths.wordpress.com/2015/05/01/badd-2015-a-game-of-spoons/" target="_blank">A Game of Spoons</a><br />
Part of a Whole: <a href="http://incl.ca/disabilitys-biggest-challenge/" target="_blank">Disability's Biggest Challenge</a><br />
<br />
<br />
<b>Art, Poetry and Fiction against Disablism</b><br />
<br />
After the Rain: <a href="https://aftertherainsite.wordpress.com/2015/05/01/poem-schooldays/" target="_blank">Schooldays </a><br />
Amelia Evelyn Voicy Baggs: <a href="https://ameliabaggs.wordpress.com/2015/05/02/poetry-for-badd-2015/" target="_blank">Poetry for #BADD2015 </a><br />
Crippled, Queer, Anglo-European Ranter: <a href="http://crippledqueeranglo-europeanranter.blogspot.com.es/2015/05/we-live-art-for-badd2015-nb-nsfw.html" target="_blank">We Live - Art for #BADD2015 (NB NSFW)</a><br />
Embrace Different: <a href="https://instagram.com/p/2Ig9QhSrJU/" target="_blank">Untitled</a> (<a href="https://www.facebook.com/EmbraceDifferent" target="_blank">Link 2</a>, <a href="https://twitter.com/embracedif/status/594059849442406400" target="_blank">Link 3</a>) <br />
<br /></td><td><br /></td><td></td><td></td><td></td><td></td><td></td><td><br /></td><td></td><td></td><td></td><td></td><td></td><td><b>General Thoughts on Disablism</b><br />
<br />
Deescribes: <a href="https://deescribesblog.wordpress.com/2015/05/01/practicing-pride/" target="_blank">Practicing Pride </a><br />
More than my Size: <a href="https://morethanmysize.wordpress.com/2015/05/01/spoooon/" target="_blank">Spoooon!</a><br />
<br />
<br />
<br />
<a href="https://murderofgoths.wordpress.com/2015/05/01/badd-2015-a-game-of-spoons/" target="_blank"></a>
<br />
<b>Parenting Issues</b><i>(whether disabled parents or the parents of a disabled child.)</i><br />
<br />
This Is My Blog: <a href="http://batsgirl.blogspot.co.uk/2015/05/badd-2015-progress.html" target="_blank">Progress</a><br />
<br />
<br />
<b>Impairment-Specific Prejudice</b><br />
<br />
<a href="http://thatcrazycrippledchick.blogspot.co.uk/2015/05/my-most-visible-disability-has-least.html" target="_blank"></a><br />
Deaf Student UK: <a href="https://deafstudent.wordpress.com/2015/05/01/im-deaf-im-not-disabled-why-should-i-do-this/" target="_blank">I’m deaf, I’m not disabled! Why should I do this? </a><br />
Living Blind Blog: <a href="http://livingblindblog.com/2015/05/01/five-things-to-remember-if-you-know-someone-whos-blind-blogging-against-disablism-day-2015/" target="_blank">Five Things to Remember if You Know Someone Who's Blind </a><br />
People First England: <a href="http://peoplefirstengland.blogspot.co.uk/2015/05/bloody-skegness-blogging-against.html" target="_blank">Bloody Skegness!</a> <br />
That Crazy Crippled Chick: <a href="http://thatcrazycrippledchick.blogspot.co.uk/2015/05/my-most-visible-disability-has-least.html" target="_blank">My Most Visible Disability Has the Least Impact on Me (No, Really)</a> <br />
This is M.E since yesterday: <a href="http://thisismesinceyesterday.blogspot.co.uk/2015/05/invisableism-blogging-against-disablism.html?spref=fb" target="_blank">INVISableism </a><br />
<br />
<a href="http://peoplefirstengland.blogspot.co.uk/2015/05/bloody-skegness-blogging-against.html" target="_blank"></a>
<b><br />Personal Journeys</b><br />
<i>Posts about learning experiences and realisations authors have had about the nature of disability discrimination and the impact on their lives.</i><br />
<br />
Bigger on the Inside: <a href="https://kwillblog.wordpress.com/2015/05/01/a-farewell-to-badd/" target="_blank">A Farewell to BADD </a><br />
Feminist Sonar: <a href="http://feministsonar.com/2015/05/badd2015/" target="_blank">Home Again </a><br />
Journeymouse: <a href="http://journeymouse.net/wp/?p=3953" target="_blank">Is It Time To Retrain… As A Fish? </a><br />
Life at Full Tilt: <a href="http://fulltiltwheelie.blogspot.co.uk/2015/05/badd-2015-vesuvius-on-wheels.html" target="_blank">Vesuvius on Wheels </a><br />
Mary Caroline: <a href="http://marycarolinegolightly.com/2015/05/01/friendly-reminder-im-still-ill/" target="_blank">Friendly Reminder: I’m Still Ill </a><br />
Scribbling on Seashells: <a href="https://eliorasmith.wordpress.com/2015/05/01/blogging-against-disablism-day-do-not-deny-me/" target="_blank">Do Not Deny Me </a><br />
Sickness and ME: <a href="https://cosimhappy.wordpress.com/2015/05/01/impermanence-and-the-gift-of-human-suffering/" target="_blank">Impermanence and the Gift of Human Suffering </a><br />
The Social Worker Who Became Disabled: <a href="http://thesocialworkerwhobecamedisabled.blogspot.co.uk/2015/05/dont-put-me-in-box-reclaiming-my.html" target="_blank">Don't put me in a box: reclaiming my narrative</a><br />
Thoughts from an Autistic Vegan: <a href="http://autisticvegan.blogspot.co.uk/2015/04/badd-blogging-against.html" target="_blank">Combatting Negative Media Messages</a><br />
<br />
<br />
<b>Disablism and Politics</b><span style="font-style: italic;"><b><br /></b><i>(For example, the political currency of disability, anti-discrimination legislation, etc.)</i></span><br />
<br />
A CRPSy Life: <a href="http://crpsylife.blogspot.co.uk/2015/05/dear-mr-cameron-from-someone-whos-life.html?spref=tw" target="_blank">Dear Mr Cameron, from someone who's life is no life at all</a><br />
Dannilion.com: <a href="http://dannilion.com/2015/05/blogging-against-disablism-day-2015-scared-of-the-government/" target="_blank">Scared of the Government</a><br />
Liberal Democrat Voice: <a href="http://www.libdemvoice.org/45712-45712.html" target="_blank">To be free from poverty, ignorance and conformity, our society must have robust support for disabled people </a><br />
Lisybabe's Blog: <a href="http://lisybabe.blogspot.co.uk/2015/05/how-many-politicians-does-it-take-to.html" target="_blank">How many politicians does it take to throw 18% of the population under a bus? </a><br />
Rolling with the Punches: <a href="http://loopys-rollingwiththepunches.blogspot.co.uk/2015/05/a-call-to-union.html" target="_blank">A Call to Union</a><br />
The eGremlin: <a href="http://theegremlin.blogspot.co.uk/2015/05/badd2015-dont-shove-me-into-your.html" target="_blank">Don't shove me into your stereotypical box </a><br />
Where's the Benefit?: <a href="http://wheresthebenefit.blogspot.co.uk/2015/05/manifestly-abusive.html" target="_blank">Manifestly Abusive </a><br />
<br />
<br />
<b>Bullying, Harassment and Hate Crime</b><br />
<br />
Christopher John Ball: <a href="https://christopherjohnball.wordpress.com/2015/04/23/what-are-you-looking-at/" target="_blank">What are YOU Looking At?</a><br />
<b><br /></b>
<b><br /></b>
<b>Disability, Life and Death</b><br />
<b><br /></b>
Sticking the Corners with Jennifer Fitz: <a href="http://www.patheos.com/blogs/jenniferfitz/2015/05/dont-kill-people-with-disabilities-especially-family-baddtweets/" target="_blank">Don’t Kill People with Disabilities. Especially Family</a><b><br /></b>
<b><br /></b>
<b><br /></b>
<b>Healthcare Issues</b><br />
<b><br /></b>
Nightengale of Samarkand: <a href="http://nightengalesknd.livejournal.com/102063.html" target="_blank">If you erase all the wrong stuff, you'll have plenty of room</a><br />
<br />
<br />
<b>Disability in Institutions</b><br />
<br />
Blogging Astrid: <a href="http://bloggingastrid.com/2015/05/01/you-cant-be-in-society-like-this-badd2015/" target="_blank">"You Can't Be in Society Like This" </a><br />
Indigo Jo Blogs: <a href="http://www.blogistan.co.uk/blog/mt.php/2015/05/01/sometimes-its-the-miles-sometimes-its-the-care-sometimes-its-both" target="_blank">Sometimes it’s the miles. Sometimes it’s the care. Sometimes it’s both.</a><br />
Through Myself and Back Again: <a href="https://throughmyself.wordpress.com/2015/05/03/blogging-against-disablism-day-2015-disability-and-christian-churches/" target="_blank">Disability and Christian Churches </a></td><td></td><td></td><td><br /></td><td></td></tr>
</tbody></table>
<br />
<a href="http://eggshellb.blogspot.co.uk/"></a></div>
<div>
<br /></div>The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com50tag:blogger.com,1999:blog-10557263.post-43379517780732529142015-04-15T15:08:00.000+01:002015-05-01T00:03:24.669+01:00Blogging Against Disablism Day 2015 will be on Friday, 1st May<h3>
<b><a href="http://blobolobolob.blogspot.com/2015/05/blogging-against-disablism-day-2015.html">Blogging Against Disablism Day 2015 is now underway. Please click here to see this year's blogs.</a></b></h3>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLaiWylev8kYb2uaHnSvvEAFESDZU_dYupCF8ds8bWaThzrnbfuAgJcap0jA66K9fN3LkRuu4JVvV3lRKrGQOxBERsH5BQwnvUCIl6BqzxUTP1X7Mh6EAdAYGI3dz4iJYbhyphenhyphenEU/s1600-h/badd02.gif" style="margin-left: 1em; margin-right: 1em;"><img alt="Blogging Against Disablism Day, May 1st 2015" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLaiWylev8kYb2uaHnSvvEAFESDZU_dYupCF8ds8bWaThzrnbfuAgJcap0jA66K9fN3LkRuu4JVvV3lRKrGQOxBERsH5BQwnvUCIl6BqzxUTP1X7Mh6EAdAYGI3dz4iJYbhyphenhyphenEU/s320/badd02.gif" id="BLOGGER_PHOTO_ID_5053607588318923298" style="float: right; margin-bottom: 10px; margin-left: 10px; margin-right: 0pt; margin-top: 0pt;" title="Blogging Against Disablism Day, May 1st 2015" /></a></div>
<div style="text-align: left;">
The tenth annual Blogging Against Disablism day will be on Friday, 1st May 2015. This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.</div>
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<span style="font-weight: bold;">How to take part.</span><br />
<br />
1. <a href="http://www.blogger.com/comment.g?blogID=10557263&postID=4337951778073252914">Post a comment</a> below to say you intend to join in. I will then add you to the list of participants on the sidebar of this blog. <b>Everyone is welcome</b>.<br />
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2. <span style="font-weight: bold;">Spread the word</span> by linking to this site (http://tinyurl.com/BADD2015), displaying our banner and/ or telling everyone about it on blogs, newsgroups, Facebook, Twitter, Pinterest and so on (we are using the hashtag #badd2015). The entire success of Blogging Against Disablism Day depends entirely on bloggers and readers telling other bloggers and readers in advance.<br />
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3. <span style="font-weight: bold;">Write a post</span> on the subject of disability discrimination, disablism or ableism and publish it on May 1st - or as close as you are able. Podcasts, videos and on-line art are also welcome. You can cover any subject, specific or general, personal, social or political. In the previous nine BADD, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with racism, sexism and other forms of discrimination. Every year I have been asked, so it's worth saying; <b>the discrimination experienced by people with mental ill health is disablism</b>, so naturally posts about that are welcome.<br />
<br />
You can see the archives for previous years here: <a href="http://blobolobolob.blogspot.com/2006/05/blogging-against-disablism-day.html">2006</a>, <a href="http://blobolobolob.blogspot.com/2007/04/blogging-against-disablism-day-will-be.html">2007</a>, <a href="http://blobolobolob.blogspot.com/2008/05/blogging-against-disablism-day-2008.html">2008</a>, <a href="http://tinyurl.com/BADD09">2009</a>, <a href="http://blobolobolob.blogspot.co.uk/2010/05/blogging-against-disablism-day-2010.html">2010</a>, <a href="http://blobolobolob.blogspot.co.uk/2011/05/blogging-against-disablism-day-2011.html">2011</a>, <a href="http://blobolobolob.blogspot.co.uk/2012/05/blogging-against-disablism-day-2012.html">2012</a>, <a href="http://blobolobolob.blogspot.co.uk/2013/05/blogging-against-disablism-day-2013.html" target="_blank">2013</a> and <a href="http://blobolobolob.blogspot.co.uk/2014/05/blogging-against-disablism-day-2014.html">2014</a>.<br />
<br />
<b>Blogging Against Disablism Day is <span style="font-style: italic;">not</span> a carnival of previously published material.</b> The point about doing this around one day (or there abouts) is that it is a communal effort and all the posts connect to one another. You can of course use your own post to promote other things you've written in the past as you wish.<br />
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4. <span style="font-weight: bold;">Come back here</span> to <a href="http://blobolobolob.blogspot.com/">Diary of a Goldfish</a> on the day to let everyone know that you've posted and to check out what other people have written. I shall post links to everyone's posts (slowly) throughout the day, creating an archive. However, I do need you to comment and leave the URL of your post or else I shan't find your post and won't be able to link to it.<br />
<br />
We have both a Twitter account <a href="http://twitter.com/BADDtweets">@BADDtweets</a> and a <a href="https://www.facebook.com/BloggingAgainstDisablismDay" target="_blank">Facebook Page</a> where there will be notifications of new posts and updates to the archive during the day.<br />
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<span style="font-weight: bold;">Accessibility</span><br />
<br />
Naturally, Blogging Against Disablism Day invites contributions from people with all variety of impairments and none at all. You are welcome to contribute with podcasts, video-blogging or anything else that allows you to take part. And whilst May 1st is when this all takes place, nobody who happens to have a bad day that Friday is going to be left out of the archive.<br />
<br />
If anyone has any questions about web accessibility, I recommend the <a href="http://www.accessifyforum.com/">Accessify Forum</a>. I am not an expert on web accessibility myself, so if there are any suggestions about how <span style="font-style: italic;">I</span> can make this day more accessible, please e-mail me at diaryofagoldfish at googlemail.com<br />
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<br />
<span style="font-weight: bold;">The Linguistic Amnesty</span><br />
<br />
Whilst discussions about language and the way it can be used to oppress or empower us are more than welcome, <span style="font-weight: bold;">please respect the language that people use</span>, particularly to describe themselves in their own contributions. We all have personal preferences, there are cultural variations and different political positions which affect the language we use. Meanwhile, non-disabled contributors can become nervous about using the most appropriate language to use, so please cut everyone as much slack as possible on the day.<br />
<br />
At the same time, do not feel you have to use the same language that I do, even to talk about "disablism". If you prefer to blog against disability discrimination, ableism or blog <span style="font-style: italic;">for</span> disability equality, then feel free to do so.<br />
<br />
I've written a basic guide to <a href="http://blobolobolob.blogspot.com/2013/04/the-language-of-disability-2013.html">the Language of Disability</a> which I hope might explain some of the thinking behind the different language disabled people prefer to use about themselves. <b><br /><br /><br />Links and Banners</b><br />
<br />
To link back to this post, simply copy and paste the following code:<br />
<textarea cols="45" rows="4" width="50%"><a href="http://tinyurl.com/BADD2015">Blogging Against Disablism Day</a></textarea><br />
<br />
These banners have seemed popular over the last couple of years and I am yet to think of anything better. If anyone fancies editing these images or coming up with something new, then please do so. You are free to use and mess with these as you like, so long as you use them in support of Blogging Against Disablism Day. <span style="font-weight: bold;">If you already have the banner, you just need to change the URL that it links to from last year's BADD.</span> Otherwise, you simply need to copy the contents of one of these boxes and paste it on your blog, in a post or on the sidebar as you like. The banners come in two colour combinations and two sizes. The sizes are a 206 pixels square or 150 x 200 pixels.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9EzsLtZQ8addCVQ2u_QyyTsb9A_voYWFH02trXi-nkU8FTMr7WLYfqk7ntcJvGL_ycoM5QkiT5xqISj2S8v-FWigOG0bV-3t8b9_qO9As-RS1fkvkX28QV5k9Q5zbAlbxqOnh/s1600-h/badd01.gif"><img alt="Blogging Against Disablism Day, May 1st 2015" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlG7-IWPr3hTnOQRB2JGxQEMcAR_-gcvKeTsVg66maM-aWdNlvZHwzE0wy3gZEWpA-4tRiHo0I63s706PAhbYLzsbsxPq-jbK47kDJlAgI0WfPFpuISLDGcc5iju9JPbclNl0y/s320/bad01.gif" id="BLOGGER_PHOTO_ID_5053607266196376082" style="cursor: pointer; float: right; margin: 0pt 0pt 10px 10px;" title="Blogging Against Disablism Day, May 1st 2015" /></a>This is the black and white banner which reads "Blogging Against Disablism". Here's the code for the square one:<br />
<textarea cols="45" rows="6"><a href="http://tinyurl.com/BADD2015"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlG7-IWPr3hTnOQRB2JGxQEMcAR_-gcvKeTsVg66maM-aWdNlvZHwzE0wy3gZEWpA-4tRiHo0I63s706PAhbYLzsbsxPq-jbK47kDJlAgI0WfPFpuISLDGcc5iju9JPbclNl0y/s320/bad01.gif" alt="Blogging Against Disablism Day, May 1st 2015" title="Blogging Against Disablism Day, May 1st 2015" border="0"/></a></textarea><br />
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And here's the code for the narrower one (which can be seen <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBcSXhbGbBoyrY0-GAalrKdtUWPwWQTlGr_KGjwqaib4Vx7LulQ5Rs1vsOqW7dpMR6Xeu3aMYUcD3C706N8H0VQjVudXHd8aF7WjybL3oQvvs279oLeFzlw_EI6Gj39jdGTxWa/s1600-h/narrowbanner1.gif">here</a>):<br />
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<textarea cols="45" rows="6"><a href="http://tinyurl.com/BADD2015"><img src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBcSXhbGbBoyrY0-GAalrKdtUWPwWQTlGr_KGjwqaib4Vx7LulQ5Rs1vsOqW7dpMR6Xeu3aMYUcD3C706N8H0VQjVudXHd8aF7WjybL3oQvvs279oLeFzlw_EI6Gj39jdGTxWa/s320/narrowbanner1.gif" alt="Blogging Against Disablism Day, May 1st 2015" title="Blogging Against Disablism Day, May 1st 2015" border="0"/></a></textarea><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLaiWylev8kYb2uaHnSvvEAFESDZU_dYupCF8ds8bWaThzrnbfuAgJcap0jA66K9fN3LkRuu4JVvV3lRKrGQOxBERsH5BQwnvUCIl6BqzxUTP1X7Mh6EAdAYGI3dz4iJYbhyphenhyphenEU/s1600-h/badd02.gif"><img alt="Blogging Against Disablism Day, May 1st 2015" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh26LD1wFZHKQUjLZVidcpqpMYIShd5fQv1SdOqhq_sEBzfge8XPkjKt7lzKqF8z074XxcSMV_tBokCZNqwvhsL7XoQUHT-uTmlRXUmXLRyaZN7gwx9_GK3px24NqZJtqtWNyxJ/s320/bad02.gif" id="BLOGGER_PHOTO_ID_5053607588318923298" style="cursor: pointer; float: right; margin: 0pt 0pt 10px 10px;" title="Blogging Against Disablism Day, May 1st 2015" /></a>This is the colourful banner which reads "Blogging Against Disablism". This is the code for the square one:<br />
<br />
<textarea cols="45" rows="6"><a href="http://tinyurl.com/BADD2015"><img src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh26LD1wFZHKQUjLZVidcpqpMYIShd5fQv1SdOqhq_sEBzfge8XPkjKt7lzKqF8z074XxcSMV_tBokCZNqwvhsL7XoQUHT-uTmlRXUmXLRyaZN7gwx9_GK3px24NqZJtqtWNyxJ/s320/bad02.gif " alt="Blogging Against Disablism Day, May 1st 2015" title="Blogging Against Disablism Day, May 1st 2015" border="0" /></a></textarea><br />
<br />
And here's the code for the narrower one (which can be seen <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8W6vcwqHTdo6DFd43RZLo-I2dW4AtRPUIUUfs4WRgR8Z8zWP7h6Rbv7p1O7xk0S_piFLUpD1MHHPvmEP9c5jgAeFLBvldADkcq97LRRHBN2199lTJs6P2BXnTGWBQVV8te0bL/s1600-h/narrowbanner2.gif">here</a>):<br />
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<textarea cols="45" rows="6"><a href="http://tinyurl.com/BADD2015"><img src=" https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8W6vcwqHTdo6DFd43RZLo-I2dW4AtRPUIUUfs4WRgR8Z8zWP7h6Rbv7p1O7xk0S_piFLUpD1MHHPvmEP9c5jgAeFLBvldADkcq97LRRHBN2199lTJs6P2BXnTGWBQVV8te0bL/s320/narrowbanner2.gif" alt="Blogging Against Disablism Day, May 1st 2015" title="Blogging Against Disablism Day, May 1st 2015" border="0" /></a></textarea><br />
<br />
Please leave a comment (including the URL of your blog) to let everyone know you are joining in and I shall add a link to you on the sidebar. Also, if you have any questions, please ask.The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com47tag:blogger.com,1999:blog-10557263.post-8515292152376540862015-03-31T10:56:00.000+01:002015-03-31T10:56:51.403+01:00Of course we'd blame cancer for plane crash deaths<i>Discusses suicide and stigma of illness.</i><br />
<br />
Alistair Campbell wrote an article condemning media speculation about the mental health of Andreas Lubitz, the Germanwings co-pilot who, it would seem, deliberately crashed a plane into a mountain, killing 150 people on board. Campbell's article is entitled
<br />
<blockquote>
<a href="http://www.newstalk.com/would-we-be-blaming-cancer-for-the-deaths-of-those-who-perished-in-the-Alps">Would we be 'blaming' cancer for the deaths of those people who perished in the Alps?</a></blockquote>
It has been widely shared in my circles, but I keep thinking, "Yeah, we would."<br />
<br />
If the guy had cancer, there would have quickly developed a narrative in which, raging against his fate and embittered against the world, the chap decided to end it all and take everyone else with him. This is the basis for almost every disabled super-villain in comics and movies. When they're not warming our hearts, we expect people with physical illness to be angry, bitter and to love life and other people a whole lot less.<br />
<br />
The media treatment of depression is significantly worse because it treats this diagnosis - a very commonplace, highly variable condition - as if that explains everything. The guy was (probably) depressed. What more do we need to know?<br />
<br />
With cancer, the speculators would have had to expand on that - "He obviously thought the cancer was coming back" or "He was angry that he would die in his twenties while other people would experience all kinds of things he would never get to".<br />
<br />
There wouldn't have been headlines which implied that people with cancer should never be allowed in the cockpit of an aeroplane (or presumably, in any of the many positions of great responsibility people with various illnesses regularly occupy).
But narratives in which we use physical illness and impairment to explain violence and self-destruction are not uncommon.<br />
<br />
Way too often, in describing some oppression, a minority is identified who would never receive such ill-treatment. There were a lot of articles about <i>cripping-up </i>- non-disabled actors playing disabled characters, usually to overblown critical acclaim - following Eddie Redmaine's Oscar win for his role as Stephen Hawking in <i>The Theory of Everything</i>. Many of these articles stated that <i>blackface</i> is a thing of the dim and distant past; you'd never see a white actor play a black character, so why are disabled people so oppressed? Of course, the corpse of <i>blackface</i> continues to twitch, while white or mixed race actors are routinely cast in historical or fictional roles whose time and geography would suggest black or Asian characters. Meanwhile other groups - like transgender people - get to see themselves represented by their own people even less often.<br />
<br />
The mental illness vs. physical illness nonsense is especially disparaging because it demonstrates what an extremely low bar mental health campaigns tend to reach for. They want mental illness to be treated just like physical illness. Being more ambitious, I'd like mental illness to be treated as a morally neutral personal experience, not a symbol or a story, a quirk or a weakness. Many people are able to see it as just that. Culturally, we have a way to go.<br />
<br />
Sometimes, people are too sick to work. All kinds of illness, all kinds of work. This doesn't always mean such people don't come into work. They may do so because:<br />
<br />
<ul>
<li>We live in a culture which treats paid employment as the minimum criteria for a decent and valuable human being. </li>
<li>We live in a culture which treats all illness, but especially mental illness, as personal weakness.</li>
<li>Folk are afraid to disclose illness to employers, especially mental illness.</li>
<li>Employers often don't take illness seriously, especially mental illness.</li>
<li>Employers are often freaked out by illness, especially mental illness.</li>
<li>People don't always know how sick they are.</li>
<li>Other people, including doctors, don't always know how sick a person is.</li>
</ul>
<br />
In other words, even those who are convinced that a diagnosis of depression poses a significant risk need to care about the further stigmatization of mental illness. And all other illness, because our culture encourages folk to push themselves and take risks where physical or mental collapse could lead to disaster.<br />
<br />
However, depression is entirely inadequate as an explanation for Andreas Lubnitz's actions. Even in the most severe suicidal depression, there's a huge difference between being careless of other people's safety (e.g. stepping in front of a train, driving into traffic) and purposely harming others (e.g. crashing the plane you're piloting).The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com2tag:blogger.com,1999:blog-10557263.post-60313057651131788102015-03-23T16:26:00.001+00:002015-03-23T16:26:30.871+00:00Mother's Day, 2010<div class="MsoNormal">
I had read that you should try to write fiction
with just one particular reader in mind, even if your reader is an entirely imaginary
person. It’s a mistake, I read, to write for a broad audience. It’s easy, I
read (and found out for myself) to get distracted by the idea of different
people reading your work. You can’t please everyone. You may shock, annoy or
offend some of them. And you don’t want to write the book that wouldn't
shock, annoy or offend anyone at all. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Instead, I read, you should identify someone who you think
will really enjoy what you’re trying to do. If you don’t know anyone like this, invent them. Make them up and keep them in mind. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I didn't know anyone like that, so I made them up; my
imaginary ideal reader. Not someone who would unquestioningly adore every word
I wrote, but someone who would love what I wanted to achieve.
I made them up and kept them in my mind. They were quite appealing to me so they became
a secondary character in my novel, a love interest in a rather unromantic book.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I made them up. Then a friend sent me to their blog.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
………..<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My novel was near completion when 2010 came around. I had
worked so hard, for so long, with so many damn set-backs. There had been
periods of months where I couldn't write, because I was too sick or because all
my energy was otherwise spoken for.
There had been periods of months where I couldn't write because my
confidence had been comprehensively flattened. And now, finally, I was nearly
there.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAWnFFRsluOh_H3kWtNoUILVI1UnPWA0XtWvFQbRci1V-Qr5G4vqGkPsQ35a-V4-ZfrDL8cuOGMUX7puujP7spetw8j-agVi2fdFCxBd4MIyvNJ_ziZWErP7D7e9illcb-r9Sf/s1600/snow+satellite.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAWnFFRsluOh_H3kWtNoUILVI1UnPWA0XtWvFQbRci1V-Qr5G4vqGkPsQ35a-V4-ZfrDL8cuOGMUX7puujP7spetw8j-agVi2fdFCxBd4MIyvNJ_ziZWErP7D7e9illcb-r9Sf/s1600/snow+satellite.jpg" height="320" width="247" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A satellite image of the UK in January 2010.</td></tr>
</tbody></table>
<div class="MsoNormal">
This was a long, hard winter, the coldest in my life time. There
was snow about for weeks. My then husband had had an
argument with his family at Christmas and was spiraling into depression. In
January, <a href="http://blobolobolob.blogspot.co.uk/2010/01/jack.html">my friend Jack</a> died suddenly – the third friend who, having enthused
about my writing and looking forward to my completed novel, had died before I
was done (I’m putting this in the context of my novel-writing; this was not my
first, second or third thought on hearing of Jack’s untimely death). This was
the year I would turn thirty and I started doing a <a href="https://www.flickr.com/photos/blobolob/sets/72157623321765584/">Project 365</a>, taking a photograph every day. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There was something else going on. I would like to say
that a rational calculation was taking place, but it wasn't. I would like to
say that I was beginning to stand up for myself, but I wasn't. I often say, of this time,
that my marriage was falling apart, but I didn't know that. Not yet. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was very
happy. I was not happy. I felt extraordinary well-loved; for much of my adult
life, I’d been lonely, believing I was little more than a convenience or a useful ear to my friends, but that had all changed. Despite pessimism from my
then husband (<i>nobody
will turn up and I’ll have to pick up the pieces!</i>), I was planning a thirtieth
birthday party with my three close friends. Two of them were old friends
by then, but I’d only recently realised what that meant.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And thus, I felt full of love, but a love like molten lead; I
was weighed down by it, burning up with it, in danger of starting a fire if I stood
too close to the curtains. Sometimes I basked in the warmth and light of it all. Other
times, I wanted to open a window and scream for help. That last sentence isn't
a metaphor.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The last two blog posts I wrote before I finished my novel were <a href="http://blobolobolob.blogspot.co.uk/2010/02/on-not-being-beautiful-1-beauty.html">On Not Being Beautiful #1</a> and <a href="http://blobolobolob.blogspot.co.uk/2010/02/on-not-being-beautiful-2-on-beauty.html">#2</a>. These are strange to me now, because what I
wrote is perfectly valid, but I know they are written by someone who is regularly being
told that she has the face of a Klingon, the skin texture of a pizza, her arse takes up all three lanes of the motorway or some variation of the
above. At the same time, she has friends who casually tell her how good she
looks, who greet her “Hello gorgeous!” or sign off e-mails, “Keep smiling,
beautiful.” She's trying to navigate the dissonance.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Everything was rather like this. My friends were excited as I moved
towards the end of my book, while my then husband said I wasn't going to make
it and mocked every error or slur in my speech with, “I thought you were
supposed to be good with words.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
………………<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
During the last month of novel writing, I went a little mad and this madness was that bloody novel. It sounds dreadfully pretentious -
<i>suffering for my art </i>- and I do know it was completely unnecessary. If my life had been
better, it would have not made me sick and, crucially, my work could have improved. I didn't have to bleed all over the page (metaphor), I didn't have to
go into hell and back just to get the words down (not sure). These days I can
write with greater power and much less pain and mess. Back then, I was in pain. I was a mess. <o:p></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://farm5.staticflickr.com/4034/4410793870_4581cb8678_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://farm5.staticflickr.com/4034/4410793870_4581cb8678_o.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the sort of thing I got up to at this time.<br />(A sort of pyramid made up of white blister <br />packs on top of a wall socket against a red<br />wall. A tiny metal angel looks on.)</td></tr>
</tbody></table>
<div class="MsoNormal">
I couldn't work all day long, but it became very much harder to shut down my mind or escape into other things. I couldn't sleep when I tried and fell asleep with my
fingers on the keyboard. I lost interest in food. I was sometimes confused about whether I was living in the story of my life or the story I was writing. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I listened to music of flight and music of falling. I did a little yoga every day and always finished playing Otis Redding's cover of <i>(<a href="https://www.youtube.com/watch?v=gmnZRBTPzg0">Can't get no) Satisfaction</a></i>. I played the Cranberries’ <i>No Need To Argue</i> album an
awful lot, just as <a href="https://www.youtube.com/watch?v=NDGdtukIxUk">the daffodils</a> came into bloom. </div>
<div class="MsoNormal">
<o:p><br /></o:p></div>
<div class="MsoNormal">
<o:p>Other things too, I would understand differently later on; my long exaggerated startle reflex was now ridiculous. Someone could casually approach me, no loud noise, no sudden movement and I would cry out in alarm. Then there were moments of high drama, threats and shouting where I noticed I felt nothing - worse, I was thinking about some trivial aspect of my novel, as if what was happening in the room was some unfathomable soap opera on the TV in the background.</o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was also trying to help my then husband, because he was really very unwell. Every day I spend time looking for jokes or funny stories to provide a moment's relief. I rented movies I thought he'd like and watched every one by myself first, in case there was something that would upset or annoy him. At one point, I bought him smiley potato faces in a desperate childish attempt to put a smile on his face. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The night before I finished the novel, I told him that I was starting to panic about the deadline I had set. He responded, “I don’t care.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next moment, an e-mail from Stephen; <a href="https://www.youtube.com/watch?v=pRAI87PbX8c"><i>How It Ends </i>by Devotchka</a>. I began to
listen, thinking, <i>Oh god, this is long and I have no time, it’s got accordians in it and I’m going to have to say something polite about it!</i> but then the piano
started. It was oddly perfect. I listened to it on repeat as I worked. In the
morning, I played it again four or five times until I got up the courage to send
the long rambling e-mail I’d been writing, complete with a 144,000 word file
attached.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In this e-mail, I tried to tactfully address the fact that Stephen might recognise himself in one of the characters, but he mustn't read anything into it. After all, Stephen has a different reason to walk with a stick and references <i>Dawn of the Dead </i>rather than <i>Chopper Chicks in Zombie Town</i> as an allegory for human endurance. The personalities may be identical, but I wrote all that before I knew him. <i>I made him up!</i> I don't want Stephen to think I am secretly in love with him or anything. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I couldn't say all that. So I wrote around it. At a great length. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<o:p> ..................</o:p></div>
<div class="MsoNormal">
<br /></div>
<div style="text-align: left;">
</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://farm3.staticflickr.com/2719/4431086375_c20f0b9084_o.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://farm3.staticflickr.com/2719/4431086375_c20f0b9084_o.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">(The bottom of an unsent e-mail, reading<br />"Got to... click... send... button..")</td></tr>
</tbody></table>
<div class="MsoNormal">
It is Sunday morning; Mother’s Day 2010. I take this screen grab
and put it on Flickr. Only one other person, apart from Stephen and I will see it and know what it means. But I am compelled to make some
public record.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then I click <i>send</i>. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Everything has changed. I've written a novel. I am not the
same person I was yesterday, when I hadn't written a novel. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Stephen e-mails me with photographic evidence of my novel safely on his e-reader. He then sends the <a href="https://www.youtube.com/watch?v=9LarNNorW6U">Thomas Truax cover of <i>I’m Deranged</i></a>
in response to that weird rambling e-mail. Half
an hour later, he e-mails to tell me he’s read the first chapter. He's loving
it so far. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7tbyYbz_OJ_TDoKyV3AJQBc-IyMIrPBMxhVWidlm7sHeX1q3qfZ80ZbCWkldl3V2DF4rT1PKTqVpm71gX5O_xlmxVLpTIYw4DUPnBWCfPTt52Fw4W6vdAYLtrfyjyjh6zjfJ8/s1600/e-reader.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7tbyYbz_OJ_TDoKyV3AJQBc-IyMIrPBMxhVWidlm7sHeX1q3qfZ80ZbCWkldl3V2DF4rT1PKTqVpm71gX5O_xlmxVLpTIYw4DUPnBWCfPTt52Fw4W6vdAYLtrfyjyjh6zjfJ8/s1600/e-reader.jpg" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">(An e-reader held in a hand.)</td></tr>
</tbody></table>
<div class="MsoNormal">
I haven’t mentioned the fact that I've finished my novel to
the man I am inexplicably still married to; I really hoped he would ask.
But I tell him that Stephen's read the first chapter. No congratulations. He says, “Sure he’s not on top of a
tall building, about to throw himself off to avoid reading the rest?”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My then husband is thinking about death a lot and imagines I have
the same effect on everyone. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s Mothers Day. I must spend time with my mother. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My parents and I go to my cousin’s house,
where we have a meal with two cousins and an aunt (we’re supposed to be eating
with my Granny, since it’s Mother’s Day, but we've managed to mislay her). We
catch up with what was happening with everyone’s life, apart from mine. We talk
about my sister, brother-in-law and nephew, we talk about other cousins, their
partners, aunts and uncles, we talk about Granny and the great uncles and
aunts. Even a couple of second cousins are mentioned at one point. Nobody asks
me a damn thing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I notice this - I do notice it, from time to time, the way my
family believes I have absolutely no life to speak of - but I especially notice
today because I’m thinking, </div>
<div class="MsoNormal">
<i><br /></i></div>
<div class="MsoNormal">
<i>This is the most important day of my life!</i><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This really is. I consider blurting out, “I just
written my first novel!” but I don’t. And to be honest, it’s just good
to be out of the house and away from everything, to hear about other people's lives and dramas. People write books; it's not all that extraordinary. It's just extraordinary that I should.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s also good to have some time away from my laptop where I might anxiously await e-mails from Stephen. When I get back, he's e-mailing to complain that he had a sleep during the day and my book gave him nightmares.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The produce of my imagination has entered another person's subconscious. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
…………<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On the Monday, while Stephen is still reading my novel, my
then husband and I have a big talk. He tells me that he doesn't love me anymore. I am boring, unattractive and very difficult to live with. He knows he’s depressed and things may well change in time, so there's no point doing anything about it right now.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have heard something like this before, several times. The routine is that I go on a sort of probation; try harder, avoid
pissing him off so much and after a while, I will say <i>I love you</i> and I’ll get
it back: “I love you too.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But this time, I take it badly. A big chunk of the lovely
awful molten lead inside me breaks off, leaving a deep physical pain, a gaping
aching space in my chest where there should be no space. I weep. It is like
witnessing a death, the totality of loss I feel. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yet, straight away, I feel lighter.
Lighter in a lost and listless way, but definitely lighter.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A friend and I have talked about me staying with her in Wales for a week sometime. I call her and we make a proper plan.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
…………<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On the Tuesday, Stephen finishes reading my novel. We talk
on Skype for about two hours. He loves it. He is brimming with praise and talk of the bits that scared, moved or amused him. He is so proud of me, he gets a little choked up saying so. There are issues with pacing. There are a shameful number of
typos. There are a few points of slight confusion. But he <i>loves</i> it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When we've finished talking, the man who doesn't love me
anymore warns me, quite seriously, that I mustn't trust Stephen. He’s too nice.
He couldn't possibly be being honest about it. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I believe otherwise.</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com4tag:blogger.com,1999:blog-10557263.post-35040647117443296912015-03-07T17:04:00.001+00:002015-03-07T17:11:59.642+00:00Two fat men: fictional bodies as metaphor and identity I’ve been thinking about bodies, metaphor and identity, in
the context of two very different stories; J K Rowling’s
<i>The Casual Vacancy</i> and Hilary Mantel’s <i>Wolf Hall</i> and <i>Bring Out The Bodies</i>
(the same story over two books). Both have been given recent BBC TV adaptations where prominent fat characters have been played by fairly slim actors, which is
undoubtedly why they have been on my mind.<br />
<br />
This is how J K Rowling introduces the patriarchal character
of Howard Mollinson in her novel, <i>The Casual Vacancy</i>:<br />
<blockquote>
He was an extravagantly
obese man of sixty-four. A great apron of stomach fell so far down in front of
his thighs that most people thought instantly of his penis when they first
clapped eyes on him; wondering when he had last seen it, how he washed it, how
he managed to perform any of the acts for which a penis is designed. Partly
because his physique set off these trains of thought, and partly because of his
fine line in banter, Howard managed to discomfort and disarm in almost equal
measure, so that customers almost always bought more than they meant to on a
first visit to the shop.</blockquote>
I like this, but you know, I don’t like it. Then, as the
book goes on and we’re not allowed to forget how very fat Howard is, I like it even less. Howard’s fatness represents his greed; he is a glutton and a lech, he is hungry for power and influence.
He has a disgusting rash under his belly, he takes up space and tax-payer's money.<br />
<br />
In much the same way, we know that Uriah Heap is ghoulish before
he speaks or moves because he looks like a ghoul. Except even that was David Copperfield's own impression.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz7OzcWqB7ysABDR562cjQrikb9irR2HYWMhoIzWk_DZyH-Mei3UuhfinzWkv5pvGis2ysbwBwGWMMhRcJ6Nz0GU2cSD5bJ0Kdg8Bb9meg4CYMxhqbA0QF1ECsQdQi6rfMqBn5/s1600/Henry+VIII.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz7OzcWqB7ysABDR562cjQrikb9irR2HYWMhoIzWk_DZyH-Mei3UuhfinzWkv5pvGis2ysbwBwGWMMhRcJ6Nz0GU2cSD5bJ0Kdg8Bb9meg4CYMxhqbA0QF1ECsQdQi6rfMqBn5/s1600/Henry+VIII.jpg" height="320" width="182" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Henry VIII by Hans Holbein<br />A large white bearded man <br />in regal Tudor costume, complete<br />with codpiece, in case you forget.</td></tr>
</tbody></table>
Another fat man with a game-changing penis is Henry VIII in
Hilary Mantel’s <i>Wolf Hall</i> and <i>Bring Out The Bodie</i>s. Mantel is at a great
advantage with Henry on two counts. First of all, she didn’t – couldn’t –
invent his body. She didn’t choose his red hair, his colossal height, his
increasing girth or his gammy leg. Secondly, most of us have a fairly clear
vision of what Henry VIII looked like. Thus, there is no passage where Mantel says, <i>Here
is a man called King Henry; here is what he looks like.</i> His appearance, however, is mentioned often:
<br />
<blockquote>
How colourful Henry is! How like the king in a new pack of
cards! </blockquote>
<blockquote class="tr_bq">
When he sees Henry draw his bow, he thinks, <i>I see now, he is royal</i>.</blockquote>
<blockquote>
A broad man, a high man, Henry dominates any room. He
would do it even if God had not given him the gift of kingship. </blockquote>
<blockquote>
Is the king’s head becoming
bigger? Is that possible in mid-life?</blockquote>
Henry is overwhelming. He is, both literally and figuratively, the biggest man around. His clothes and physical mannerisms serve to make him seem larger and brighter.<br />
<br />
There are other important bodies in these books; the
body of Catherine of Aragon is deemed too old to play her role of bearing children. The body
of Ann Boleyn, so desired by Henry, is criticised by her enemies as
undesirable; she is flat-chested, she is a “goggle-eyed whore”. Princess Mary is
unsuitable as an heir, both as a woman, and because she is small; a “dwarf”. Even toddler Princess
Elizabeth, sharing her hair colour with her father, is described as a “ginger
brat”.<br />
<br />
But all of this information is delivered in the words and thoughts of characters. Mantel never tells us what people look
like but instead, <i>how they are seen</i>. Sometimes, <i>how they see themselves</i>.<br />
<br />
When J K Rowling invented lustful lingerie-saleswoman,
Samantha, and teenage sexpot Crystal, the two most sexual and sexualised women
in the novel's universe, she also made them the only two women with notably big
breasts (Samantha even has sexual fantasies in which she is conscious of what her enormous breasts look like to her lover). The romantically desperate social worker, Kay, has
stocky thighs. Lovelorn teenager Andrew,
beaten by his father and exploited by his far more confident best friend, has extensive facial acne.<br />
<br />
Rowling does sometimes place visual descriptions in the minds or words of characters, but often she uses the authorial voice. <i>Most people</i> see a fat man and think about his penis.<br />
<br />
The character of Tessa, described as “overweight”
(that's a BMI of between 26 and 30, in case you were vague about what that looks like), sits looking at <i>Heat Magazine</i> in a doctor’s waiting room:<br />
<blockquote>
She remembered telling a sturdy little girl in Guidance that looks did not matter, that personality was much more important. <i>What
rubbish we tell children</i>, thought Tessa.<o:p> </o:p></blockquote>
Tessa has a point; in this universe, people’s
looks are often physical manifestations of their vices and vulnerabilities*.<br />
<br />
My body is part of my identity. I didn't chose my face, but if you see a photograph of it, you see me. My bodily experiences influence who I am. There are folks for whom their bodies are much more or much less part of their identity; some people go to great lengths to express themselves through their looks, while others are largely indifferent. Some people feel trapped inside their bodies, while others revel in every detail of their physical selves.<br />
<br />
However, my body is not a metaphor for anything. And goodness knows, people see metaphor in me, in my gender combined with my age, my height, my weight, my breasts, my bum, the length of my legs. People see metaphor in a walking stick or a wheelchair (hardly surprising when it's pretty rare to read fiction where these things are <i>not</i> metaphorical). I know people see metaphor if I wear make-up or not, the length and style of my hair, my clothes and shoes.<br />
<br />
I'm not especially worried about the plight of fat, middle-aged white men - they are not underrepresented in the highest echelons of power, they are not a vulnerable group who suffer widespread discrimination or abuse (although they suffer <i>some</i> discrimination and abuse, and the BBC cast Damien Lewis as Henry and Michael Gambon as Howard, presumably because they couldn't find high caliber fat male actors in the right age brackets, presumably because such actors don't usually get a lot of work).<br />
<br />
Meanwhile, I am fascinated by the mechanism; I am fascinated by the way rational human beings seek out meaning in accidents of genetics and nutrition. I am fascinated the way that hated figures are seen as ugly - David Cameron is almost eerily unremarkable in his looks, the silver Ford Focus of men, who you wouldn't so much as glance up at on a bus or in a pub. Yet to many of his detractors, he becomes reptilian, his eyes are too close together, his hair is receding comically, his skin is plastic.<br />
<br />
People need to tell stories about the way people do this.<br />
<br />
We need to avoid telling stories as if this way of thinking is entirely fair. <br />
<br />
<br />
<br />
* When we were talking about this, Stephen reminded me of <i><a href="http://www.amazon.co.uk/The-Singing-Detective-Darren-Williams/dp/B000198ABQ">The Singing Detective</a></i>, which handles skin disease as perceived punishment for various sins - the body as metaphor, at some considerable length. This is absolutely superb but it is all about how the protagonist understands his body and illness (other characters have different perspectives - other characters apply different metaphors).The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com1tag:blogger.com,1999:blog-10557263.post-16613816650263306002015-02-04T14:24:00.000+00:002015-02-04T14:24:39.520+00:00The 10th Bloggerversary PostThis morning I thought, "It must be about ten years since I started <i>Diary of a Goldfish</i>." and indeed it is - Sunday was the tenth anniversary of <a href="http://blobolobolob.blogspot.co.uk/2005/02/i-begin-to-keep-blog.html" target="_blank">my very first post</a>. I started on the casual suggestion of my brother-in-law, before I ever really read a blog. I feel quite lucky that I plunged into it without much thought - if I had had a particular agenda or theme, it might not have proved so useful.<br />
<br />
A lot has happened in ten years. I wrote a novel and am almost done with my second. I got married to the wrong person for the wrong reasons, met Stephen, divorced and married the right person for the right reasons. I learned to paint. I've seen a fair amount of bereavement but I've gained a nephew, niece and a new extended family. I moved home four or five times, depending on how you count it.<br />
<br />
As a result of blogging, my words have ended up all over the place; <i>The Guardian</i>, the BBC, education resources, disability studies periodicals. I got my face on the front cover of <i>The Cambridge City News </i>(along with some rescued kittens - it was a real slow news day). I've been invited to join <i>Where's the Benefit?</i> and <i>the F-Word</i>. I never had any ambition to do any kind of non-fiction writing, so it's been great.<br />
<br />
I've also made some very good friends and had some very interesting and important conversations. I founded Blogging Against Disablism Day, which I know has come to mean a lot to many people.<br />
<br />
However, this blog is really a gift you give to me, dear reader. I don't imagine I'm providing any kind of public service or useful function - it's really nice when something I write is useful or interesting to someone. But the person who has benefited the most from <i>Diary of a Goldfish </i>is me. It's given me lots of writing practice and helped my writing to improve. It has given me a place to express myself, vent and lecture people on subjects that matter to me without awkward social consequences. And I know you're there, in varying numbers, so I can pretend you're hanging on my every word. I sometimes get lovely comments, here and elsewhere and that stuff is <i>huge</i> to me. At a particularly difficult point in my life, I had an A4 print out of the nicest things people had said about my writing.<br />
<br />
My blogging has changed a lot in ten years (as the world of blogging has). Earlier on, I was more or less keeping a diary, which was useful because, at the age of twenty-four, I was still struggling to be the protagonist in my own life story. Later on, some of these posts became downright disturbing. While it was going on, nobody knew about the violence in my first marriage and I rarely had to explain anything - my face was never bruised, I never sought medical attention. However, after my divorce, when I went through my archive in order to completely anonymise my first husband, I found that it was as if I had been compelled to write on days where there'd been violence and instead tell a funny or sweet story where no-one got hurt. I was spinning stories to myself, in public. Sometimes I told abject lies - entirely unnecessarily lies.<br />
<br />
I find that baffling and weird, even now. I took all these posts down, by the way. There are plenty of posts where I express ideas or opinions I no longer agree with, but I took down anything I found where I actually lied.<br />
<br />
There have been a few points where I thought about ditching the blog, possibly starting afresh, but I'm really very attached to it. If I had thought more about my 10th Bloggerversary coming up, I would have prepared a better post.<br />
<br />
Stephen suggested that I should post links to my "Top Ten Posts". I don't know if these are my favourites - there's almost a thousand to choose from and I'm not going to spend the next week reading through my entire archive. However as a fairly evenly spread selection (2005 was just too weak):<br />
<br />
<ol>
<li><a href="http://blobolobolob.blogspot.co.uk/2006/01/love-is-real-real-is-love.html" target="_blank">Love is real, Real is love</a> (2006)</li>
<li><a href="http://blobolobolob.blogspot.co.uk/2006/02/above-and-beyond-butchs-diary_26.html" target="_blank">Above and Beyond: Butch's Diary</a> (2006)</li>
<li><a href="http://blobolobolob.blogspot.co.uk/2005/07/propaganda.html" target="_blank">Propaganda</a> (2007)</li>
<li><a href="http://blobolobolob.blogspot.co.uk/2008/03/i-thought-i-was-someone-else-someone.html" target="_blank">I thought I was someone else, someone good</a> (2008)</li>
<li><a href="http://blobolobolob.blogspot.co.uk/2009/04/how-to-be-disabled-villain.html" target="_blank">How to be a Disabled Villain</a> (2009)</li>
<li><a href="http://blobolobolob.blogspot.co.uk/2010/12/it-was-thirty-years-ago-today.html" target="_blank">It Was Thirty Years Ago Today</a> (2010)</li>
<li><a href="http://blobolobolob.blogspot.co.uk/2011/06/looking-after-yourself-as-radical.html" target="_blank">Looking After Yourself as Radical Political Activism</a> (2011)</li>
<li><a href="http://blobolobolob.blogspot.co.uk/2012/05/domestic-violence-why-zero-tolerance-is.html" target="_blank">Domestic Violence: Why Zero-Tolerance is So Tough</a> (2012)</li>
<li><a href="http://blobolobolob.blogspot.com/2013/02/how-marriage-became-more-meaningful.html" target="_blank">How Marriage Became More Meaningful</a> (2013)</li>
<li><a href="http://blobolobolob.blogspot.com/2014/04/the-history-of-my-adult-life-in-about.html" target="_blank">The History of My Adult Life in About 100 Object</a>s (2014)</li>
</ol>
<div>
And now, having skimmed the archive to retrieve these links, I realise I really ought to organise some pages of links to the three or four subjects I keep coming back to.</div>
<div>
<br /></div>
<div>
Thank you all very much for this. Where on Earth are we going to be in another ten years time? </div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com7tag:blogger.com,1999:blog-10557263.post-86447958921669694962015-01-08T12:22:00.002+00:002015-01-08T12:22:45.483+00:00We must tolerate the tyranny of jesters #charliehebdoThe kind if terrorist attack we've come to fear in the West is targeted at random civilians. They attacks our freedom, in so far as they inhibit the freedom of any of us to go about our daily business completely without fear.<br />
<br />
But yesterday's <a href="http://www.bbc.co.uk/news/live/world-europe-30710777" target="_blank">massacre at <i>Charlie Hebdo</i></a> is a specific attack on freedom of expression. It is not a freedom everyone in the world has access to. Even when protected by the law, it is not shared equally in real terms. Some voices are louder than others, some are handed platforms and loud-hailers while others are muffled and overlooked. Yet however imperfect, it is an absolute and fundamental freedom. It is one of the greatest strengths of a liberal democracy.<br />
<br />
Yesterday, my Twitter feed featured two rather odd responses to the events in Paris.<br />
<br />
There were folks who insisted that satire is always a force for good. There were folks who said things along the lines of, "My idea of equality is that everyone has an equal right to be laughed at."<br />
<br />
Some of these were posting <i>Charlie Hebdo </i>cartoons in solidarity. Although the magazine mocks all faiths and political stripes, the most notorious cartoons mock Muslims and the Prophet Mohammed. The magazine's freedom to publish such material is absolutely precious, as precious as any liberty you can name. The cartoons on Twitter, however - just two or three in forty-four years of weekly issues - mock members of a feared and stigmatised minority.<br />
<br />
On the other hand, there were folks discussing, at length, what a dreadful racist and Islamophobic publication <i>Charlie</i> <i>Hebdo</i> is. Some complained that the magazine has joked, in the past, about Muslims being killed. It was really hard to see that yesterday and not infer the belief that the dead cartoonists and others, their lives stolen from them in a terrifying manner, their families and friends faced with devastation, had it coming to them.<br />
<br />
"It's just a joke" is very often a lie. Humour is like any other tool of communication - its uses are not morally neutral. It can bring people together and lighten the load. It can be used to speak truth to power - often in circumstances where a direct attack would be impossible or ineffective. Satire is an immensely powerful weapon against governments and institutions which resist straightforward criticism.<br />
<br />
This is partly why freedom of expression is so vital, but that's not how the argument must be made. The argument must be made in the defense of things we don't like, opinions we wish didn't exist, the stuff that offends us. And some of that is also expressed in humour.<br />
<br />
There's no hateful force in history that hasn't employed humour to single out its enemies, to humiliate and degrade people it wishes to dismiss, oppress or eliminate. Anyone who has ever been bullied or abused is familiar with humour's sharp edges and bludgeoning force. People who rape or beat people will joke about raping and beating people - sometimes while they're doing it. Bigots of all variety will <i>get away</i> <i>with</i> making jokes about the beliefs they would be condemned for expressing openly.<br />
<br />
When I say <i>get away with</i>, I do of course mean that such people can sometimes say things without provoking censure or disapproval. Censure and disapproval are appropriate responses to words and pictures that offend us. Offense matters. But it never justifies violence.<br />
<br />
It's no accident that almost every time a public figure is criticised for racist, homophobic or other bigoted speech, it's a joke. In a liberal democracy, there are many opportunities to express the most extreme belief you can think of - you just can't paint it on the side of your house or demand five minutes on BBC One. However, there are many views which are now, largely, socially unacceptable - like being racist, misogynistic or homophobic.<br />
<br />
But tell a joke about a marginalised group and it's ambiguous. You can use the ugliest terms and <a href="http://www.newstatesman.com/media/2014/05/n-word-jeremy-clarkson-has-finally-urinated-live-rail-racism" target="_blank">explain it away as an accident</a>, a momentary error of judgement. You can say, "I didn't mean it - it was a joke! Some of my best friends are black/ gay/ women/ whatever!" Or, if comedy is your trade, you can explain it away as simply doing your job; making people laugh. You can hold onto your progressive, nice guy, right-on credentials. You can dismiss objectors as humourless, thin-skinned and politically correct. You can laugh at them all the harder.<br />
<br />
There's nothing inherently benign about humour in general or satire in particular. Satire can be fueled by hate and it can stir up hate. It can reinforce ideas that lead to violence or oppression.<br />
<br />
But, crucially, it is <i>not</i> violence. It is an awful long way back from violence. It shouldn't be criminalised and it most certainly shouldn't be responded to with violence. Objection, argument, boycott, social and political pressure - we need to take humour seriously (I really hate that, but it's true). But the worst, most hideously offensive joke doesn't warrant a punch in the face, let alone being shot in one's place of work.<br />
<br />
This cartoon by <a href="http://www.canberratimes.com.au/photogallery/federal-politics/cartoons/david-pope-20120214-1t3j0.html" target="_blank">David Pope of the Canberra Times</a> is entirely apt. Killing people because of the things they say or write or draw is as ridiculous as it is horrifying.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpaWMxQQfYAaluimf8l7l8aqkCq4TLnxtgl7U5wqLTbj2PhhzlWJDclwSsC8pAIuuG-ONwCEyYVUcdDpLmApBkrgTOhzbi5bFPzlxM-G8seej_HJBINjYC5EXrSEnXe3ywnjLE/s1600/charliehebdo.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpaWMxQQfYAaluimf8l7l8aqkCq4TLnxtgl7U5wqLTbj2PhhzlWJDclwSsC8pAIuuG-ONwCEyYVUcdDpLmApBkrgTOhzbi5bFPzlxM-G8seej_HJBINjYC5EXrSEnXe3ywnjLE/s1600/charliehebdo.jpg" height="425" width="640" /></a></div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com0tag:blogger.com,1999:blog-10557263.post-26390744657672798592014-12-27T12:34:00.002+00:002014-12-27T12:34:50.991+00:00And why shouldn't Idris Elba play James Bond?Here are some facts about the fictional character of James Bond as represented in the books and films:<br />
<br />
<ul>
<li>James Bond's age shifts randomly along a range between 30 and 57 years old. In the most recent movie, fifty years after the first book, he was 44. </li>
<li>Bond's height varies between 5'10" and more than 6'2". </li>
<li>He has a range of upper middle-class English accents, with the exception of one Sean-Connery-trying-to-sound-English accent.</li>
<li>His eyes are blue-grey, blue and brown. His hair is blond, brown and black. He has either smooth complexion or a significant facial scar.</li>
<li>His parents are probably Scottish but possibly Swiss. </li>
<li>Sometimes, he gets attached to a woman and is very upset if anything happens to her. Other times, he shrugs off the death of a lover like a broken nail.</li>
<li>His entire personality shifts about in subtle and not-so-subtle ways. </li>
</ul>
<br />
Different creative people, different writers, actors and directors treat their subject differently. But here are some ways in which James Bond has always been the same:<br />
<br />
<ul>
<li>He is a British secret agent with MI5, code name 007, etc.. </li>
<li>He's really into stuff. He likes expensive clothes, watches, weapons and cars.</li>
<li>He likes a dry martini, shaken but not stirred. </li>
<li>He enjoys having sex with women that either he or his enemies have power over. </li>
<li>He is suave, cool and charismatic. He suits tailoring. </li>
<li>He is serious but not especially earnest. </li>
<li>He is quick-witted, with a dry sense of humour.</li>
<li>He is a bit of a git. Sometimes a<i> lot </i>of a git, but always a bit.</li>
<li>He is physically imposing, fit, fast and strong.</li>
<li>He is taller than the average British man.</li>
<li>He is white.</li>
</ul>
<br />
Together with height, whiteness is the most superficial trait that all versions of Bond have had in common. Whiteness is not part of the essential character of James Bond. Whiteness is part of the <i>origin </i>of Bond, along with the Cold War and all manner of 1950s period detail, long since discarded by film-makers. Whiteness is not anachronistic, but whiteness as an essential quality, important to Bond's character, context or any of the adventures he gets up to, is. <br />
<br />
A <a href="https://twitter.com/DMReporter/status/546969018192896000/photo/1" target="_blank">selection of outraged comments</a> about the suggestion of Idris Elba as the new James Bond from the Daily Mail website, was making the rounds on Twitter (I found them so unlikely, I had to verify them. <i>At Christmas time!</i>). Among other nonsense, there are various demands that white actors be allowed to play fictional characters who had previously been cast as black.<br />
<br />
These fictional characters included:<br />
<blockquote class="tr_bq">
Shaft<br />Idi Amin<br />Martin Luther King<br />Nelson Mandela</blockquote>
So, in other words, just Shaft; a character who can boast only a handful of films, only one of which everyone saw. A character who has only ever been played by one actor (remember, Samuel L. Jackson played Shaft's <i>nephew</i>). A character who lives in the Harlem of the 1970s, whose friends, contacts and context are largely black. A character whose experiences are informed by the racism of his country at the time. Shaft is a big black private dick, who's a sex machine to all the chicks.<br />
<br />
Shaft is black as Hornblower is white. Hornblower is a British naval commander in the 1800s. There were British black folk about during the Napoleonic Wars, but racism would make it impossible for a black man to have such social privilege and education, let alone become a naval officer. Hornblower is a great white naval nob, who never thinks of petticoat when he's on the job.<br />
<br />
Other characters have far greater flexibility. There are examples of characters, previously played by white actors, played by people of colour without a hitch; the new <i>Annie</i> is black, the recent <i>Ironside</i> is black (though played by a non-disabled actor). Both Guinevere and Elyan in the TV series <i>Merlin</i> (although <a href="http://elodieunderglass.com/2012/10/13/713/" target="_blank">there are people of colour in the Arthur legend</a>) are black and Lucy Lui plays Watson in the US version of <i>Sherlock</i>. The <a href="http://www.amazon.co.uk/Julius-Caesar-DVD-Paterson-Joseph/dp/B009PM2BDS" target="_blank">only production of Julius Caesar</a> I've seen had an all black cast and was fantastic. Yeah, Julius Caesar probably had paler skin, but he also spoke Latin and he probably died saying, "Aaaarrrrggghhh!"rather than "Et tu brute? Then fall Caesar!"<br />
<br />
Far far more often, literary characters are made white, or much paler, on our screens (just in the last year, see <i><a href="http://the-toast.net/2014/03/28/logical-conclusions-white-noah/?utm_source=rss&utm_medium=rss&utm_campaign=logical-conclusions-white-noah" target="_blank">Noah</a>*</i>, <i><a href="http://mediadiversified.org/2014/12/17/exodus-cinematic-success-or-not-its-a-failure-at-history/" target="_blank">Exodus: Gods & Kings</a> </i>and <i><a href="http://www.theguardian.com/commentisfree/2013/nov/03/few-black-female-stars-darker-skinned" target="_blank">Half of a Yellow Sun</a></i>). In the same way, disabled characters are either made non-disabled or <a href="http://www.theatlantic.com/entertainment/archive/2014/07/why-disabled-characters-are-never-played-by-disabled-actors/374822/" target="_blank">played by non-disabled actors</a>. The excuses are that there are too few actors of colour with box office draw and no famous disabled actors at all (maybe you have to get cast to get well-known).<br />
<br />
However, the fact that the same industry routinely <a href="http://blobolobolob.blogspot.com/2011/04/losing-ambiguity.html" target="_blank">straightens out</a> lesbian, gay and bisexual literary characters suggests another motive. There's <a href="http://thehathorlegacy.com/why-film-schools-teach-screenwriters-not-to-pass-the-bechdel-test/" target="_blank">a widespread belief</a> that white straight non-disabled men can only tolerate movies and television shows where people like themselves predominate. This despite the fact that movies with strong female characters <a href="http://www.telegraph.co.uk/culture/film/film-news/10555209/Bechdel-Test-films-triumph-at-the-box-office.html" target="_blank">do very well indeed</a>.<br />
<br />
(Not that long ago, <i>all </i>significant characters were played by white folk. The most recognisable Othello on film remains <a href="http://www.amazon.co.uk/Othello-DVD-Laurence-Olivier/dp/B0000A33RG" target="_blank">a blacked-up Lawrence Olivier</a>. Of course, in the earliest productions, even Desdemona was played by a white man. Times change. People change them.)<br />
<br />
I'm not suggesting that we attempt to counter this erasure with a <i>black Bond</i>. I'm suggesting that if we can fiddle about with characters in order to appease the variously bigoted elements of the film and television industries, then there can be no argument about <i>preserving</i> the whiteness of a fictional character if there's an excellent non-white candidate.<br />
<br />
Idris Elba would make an excellent Bond. Not all talented and charismatic actors can do it as there's a certain kind of charisma required. Even the omnipresent Cumberbatch has his limits. Elba is not the only candidate right now - Tom Hardy could do it, maybe Damien Lewis - but I can't think of anyone who would do it better.<br />
<br />
Meanwhile, there are good reasons, in addition to pure merit, for casting a black guy as Bond or any lead role. Folk - especially young people - need to see themselves represented in a diversity of roles. Folk - especially young people - need to see <i>one another </i>represented in a diversity of roles. <a href="http://blobolobolob.blogspot.co.uk/2007/03/nobody-does-it-better-makes-me-feel-sad.html" target="_blank">James Bond isn't exactly renowned for this</a>, but hey.<br />
<br />
Wednesday's <a href="http://www.newyorker.com/cartoons/daily-cartoon/daily-cartoon-wednesday-december-24th" target="_blank">New Yorker</a> featured the following cartoon:<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJlFe8-gcBP9WrIC_5n7RlsRLOxHFgzMHZfKfdNbyNZRvg6ywymXfYqKAk5KeYwZncxAmlOqALIjI8LsrxtHhvhd_DJoFOGocoD_W91KpQJ7x3aF-cVwr_ZbQoNwnY2KyC_gf_/s1600/santa+elba.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJlFe8-gcBP9WrIC_5n7RlsRLOxHFgzMHZfKfdNbyNZRvg6ywymXfYqKAk5KeYwZncxAmlOqALIjI8LsrxtHhvhd_DJoFOGocoD_W91KpQJ7x3aF-cVwr_ZbQoNwnY2KyC_gf_/s1600/santa+elba.jpg" height="590" width="640" /></a></div>
[A domestic scene where an older white lady clings to the arm of a tall black man in a santa outfit while an older white man with a long white beard looks on. The caption reads, "You've been Santa for a thousand years. Let Idris Elba have a chance!"]<br />
<br />
It acknowledges that Idris Elba is a man of colour with an <i>immense </i>draw. But, well, who says Santa has been the same white man for a thousand years? Sometimes the Santa in a store grotto is black, as he is in Run DMC's <i><a href="https://www.youtube.com/watch?v=OR07r0ZMFb8" target="_blank">Christmas in the Hollis</a></i> video; he's just never black on Christmas cards or in movies. But he does change. He puts on and loses weight. He frequently restyles his hair and beard. He can be aged anywhere between about 35 and 80. He changes, possibly even <i>regenerates</i>. Is there any essential quality to Santa's character, context or behaviour that suggests whiteness?<br />
<br />
And yes, on regeneration, the Doctor of <i>Doctor Who</i> could be a person of colour (though not Idris Elba - he too has his limits). The Doctor could also be <a href="http://www.theguardian.com/lifeandstyle/womens-blog/2014/nov/03/female-doctor-who-only-matter-of-time" target="_blank">a woma</a>n or non-binary, have a physical impairment or whatever else. Not <i>should</i>, just for the sake of it, but if an actor is right for the part.<br />
<br />
We're talking fiction. Things still have to fit together; characters must be consistent, plots must hold. But the possibilities are as expansive as the silence that follows the question, "Why not?"<br />
<br />
<br />
<br />
* The Bible makes no reference to Noah's race or his geographic location (unlike the story of <i>Exodus</i>, which is quite specifically <i>not</i> a time or place with a lot of Northern Europeans running the show). However, if you're going to recount a world-famous origin myth and you the resources of a major production, you have really four options:<br />
<br />
<ol>
<li>Cast people of African descent because that's where all our early ancestors were.</li>
<li>Cast a great mix of ethnicity, to represent the diversity of humanity on Earth. </li>
<li>Cast people who look like the people who created and eventually wrote down the myth, </li>
<li>Cast only white people, because only white people matter.</li>
</ol>
<div>
These things do not apply if you're making a student film, a school play or a theatrical production with a small company. But in a big budget movie depicting a myth that belongs to a huge proportion of the world's population, the decision to employ an all-white cast supports a very particular world-view. </div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com1tag:blogger.com,1999:blog-10557263.post-42179640835286216202014-12-24T13:51:00.001+00:002014-12-24T13:51:29.089+00:0034<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVEL1CVlxf5SNB-C6F7t1PmpbjQwVbgchOFkMG_CmIaAzeZAaTYfkg14GOOjzHrS21G9BDu2PTcTgsx0ZI8aChFy1WdaR9sK2yxWli_MnF-1iN78QaPGlXVNXwBnPpmlIOrnya/s1600/Christmas+001.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVEL1CVlxf5SNB-C6F7t1PmpbjQwVbgchOFkMG_CmIaAzeZAaTYfkg14GOOjzHrS21G9BDu2PTcTgsx0ZI8aChFy1WdaR9sK2yxWli_MnF-1iN78QaPGlXVNXwBnPpmlIOrnya/s1600/Christmas+001.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our Christmas looks like this. (A hearth over<br />an open fire with an enormous Christmas tree<br />in the background).</td></tr>
</tbody></table>
Today, I am thirty-four years old. Life is a lot better than it was this time last year. Obviously, the dead stay gone, but it has been a year characterised by healing. Healing is not the same as fixing, but there's been some fixing happening too. The greatest fix is that finally, <a href="http://blobolobolob.blogspot.com/2014/10/the-potato-harvest.html" target="_blank">Stephen and I have our own home</a> which is one of the very best things that has ever happened for us. We have borrowed a Christmas tree and we're spending our first Christmas on our own.<br />
<br />
When I thought about writing my birthday post, I thought, but that's it really. <i>We moved</i>. This entire year has been taken up by thinking, talking, planning that move, moving, then trying to get organised in our new place. I mentioned this to Stephen and he promptly corrected me.<br />
<br />
My year in unordered bullet points:<br />
<ul>
<li>In the last six months, my health has improved. What was a good day at the beginning of the year is close to a normal day now. I'm getting bad days, rather than weeks. I don't know how this can be the case given the stress and effort involved in the move. I get a little nervous about it, afraid I'll mess it up or catch a nasty bug and lose all this progress. However, it's extremely nice.</li>
</ul>
<ul>
</ul>
<ul>
<li>I finally joined Facebook. I had resisted it for years, but after Emma died I was full of regret that we hadn't spoken more often in recent months. I hoped Facebook would be a way of having more contact with some of the people I care about, and yes, it is. </li>
</ul>
<ul>
<li>Connected but not limited to this, I seem to have acquired a bunch of really great people in my life. I don't mean to suggest I have gained a great crowd of bosom buddy besties, but I have supportive people I like immensely. Some are new, others became more prominent and some are lost friends now returned. </li>
</ul>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://farm4.staticflickr.com/3904/15005346091_95c06294a5_c.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://farm4.staticflickr.com/3904/15005346091_95c06294a5_c.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lanky the wolf. (A terrifying wolf made<br />out of grey fabric, wearing trousers, a<br />waistcoat and bow-tire)</td></tr>
</tbody></table>
<ul>
<li>There have been family crises, some decidedly unbloggable. My Dad lost a third brother and my Granny lost her third son in very difficult circumstances. My mother-in-law had a bad fall from which she is only very slowly recovering, at a time when we'd just moved and couldn't travel to see her. Stephen hasn't seen his Mum since the summer, so that's the big negative of having Christmas all to ourselves. </li>
</ul>
<ul>
<li> I was going to finish my second novel this year, but <i>we moved</i>. It's close though and disaster notwithstanding, it will be done soon.</li>
</ul>
<ul>
<li>In June, I became a permanent blogger for The F-Word. This is a great honour and something I enjoy a lot. Here's a quick list of posts, in case you haven't seen any of them: </li>
</ul>
<blockquote class="tr_bq">
<a href="http://www.thefword.org.uk/blog/2014/06/kirstie_allsopp" target="_blank">Kirsty Allsop and myths about women's choices</a>; <a href="http://www.thefword.org.uk/blog/2014/06/on_self-defencehttp://www.thefword.org.uk/blog/2014/06/on_self-defence" target="_blank">Self-defense as rape prevention</a>; <a href="http://www.thefword.org.uk/blog/2014/06/the_belief_that" target="_blank">Permission to kiss: consent is simple</a>; <a href="http://www.thefword.org.uk/blog/2014/06/poetry_and_music" target="_blank">When break-up music turns sinister</a>; <a href="http://www.thefword.org.uk/blog/2014/07/sexual_assault_5" target="_blank">Sexual assault allegations and attention-seeking</a>; <a href="http://www.thefword.org.uk/blog/2014/07/when_your_lover" target="_blank">When your lover says you're ugly, it's a low-down lie</a>; <a href="http://www.thefword.org.uk/blog/2014/07/richard_dawkins" target="_blank">Richard Dawkins and the logic of "date rape"</a>; <a href="http://www.thefword.org.uk/blog/2014/09/reluctant_women" target="_blank">Reluctant Women</a>; <a href="http://www.thefword.org.uk/blog/2014/09/i_love_statisti" target="_blank">Sex, lies and statistics</a>; <a href="http://what%20does%20it%20mean%20to%20be%20vulnerable/?" target="_blank">What does it mean to be vulnerable?</a>; <a href="http://www.thefword.org.uk/blog/2014/12/restrictions_on" target="_blank">Restrictions on porn which protect no-one</a>; <a href="http://www.thefword.org.uk/blog/2014/12/restrictions_on" target="_blank">Are fat people disabled?</a></blockquote>
<ul>
<li>Because we've been so bogged down with house-related stuff, we've made a particular effort marking events. We celebrated our two first wedding anniversaries. We got <a href="http://pic.twitter.com/sNgUti5Dfb" target="_blank">over</a>-<a href="http://pic.twitter.com/FwhojichgB" target="_blank">excited</a> about the Eurovision Song Contest. We celebrated my parents' 40th wedding anniversary in October, which went really well (at least, they're still together). We all wore red (it's the Ruby anniversary) and I carved flattering pumpkin-effigies of them. </li>
</ul>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://farm8.staticflickr.com/7417/13996480245_1cc51006b7_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://farm8.staticflickr.com/7417/13996480245_1cc51006b7_o.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A painting of Sophie, a toddler dressed as a<br />superhero, standing on a cloud with the night<br />sky in the background.</td></tr>
</tbody></table>
<div>
<ul>
<li>We started going to church. As a disabled Christian, Stephen has struggled to find any spiritual home where he doesn't feel inconvenient until now. As a bisexual humanist, I anticipated a lot of difficulty with what's basically an Anglo-Catholic church, but it's all extremely egalitarian and anti-establishment. I mean, <i>seriously</i>. My main problem is that I get really into the hymns but then dyslexia strikes; I have recently read (and sung) "gifts of goodness and money" for "gifts of goodness and mercy" and, more critically, "man-made God" for "God-made man". </li>
</ul>
<blockquote class="tr_bq">
</blockquote>
<ul>
<li>I haven't had the space or time to paint very much, but I did produce one painting (right) and I'm still rather pleased with it. </li>
</ul>
<ul>
<li>We got to see quite a lot of our nephew and niece, who are doing really well. Our nephew Alex is doing well and is a very curious and creative kid. Sophie is talking and singing more or less constantly, and her drawing is amazing. She drew her first recognisable human face before the age of two (I mean, it was recognisable as a human face - the likeness to her subject (her Mummy) was less impressive). </li>
</ul>
<ul>
<li>We made a <a href="http://blobolobolob.blogspot.com/2014/02/a-rag-rug-to-bull.html" target="_blank">rag rug</a> and I've done a lot of sewing. I have sewed a few items of clothing, a <a href="https://www.flickr.com/photos/spw82/14821787080/" target="_blank">big bad wolf</a> for my niece's birthday and a lot of curtains. So many curtains. Most of the curtains are now hanging at the windows with unfinished hems - I'm letting the creases drop out, in theory, although they've now had a couple of months to do this. We've also done some <a href="https://www.flickr.com/photos/blobolob/13513870455/" target="_blank">sugar-craft</a> and a big marquetry project. So we did do other things, apart from moving.</li>
</ul>
<div>
Thank you all for being around. Hope you have a lovely peaceful Christmas if you celebrate it and a very happy New Year. </div>
</div>
The Goldfishhttp://www.blogger.com/profile/15213378454070776331noreply@blogger.com3