------------ ---------- Diary of a Goldfish: January 2011


Diary of a Goldfish

Thursday, January 27, 2011

An Entirely Biased Who's Who of the Disability Blogosphere, January 2011

@_louhicky who draws Crip Strips recently asked me about the movers and shakers within the disability movement on-line. The part of the disability movement I know most about is in the blogosphere, and when I began to think of important bloggers to tell Lou about, I thought it might make something of a celebratory post. As it turned out, I've had a few poorly weeks and during such times it is other bloggers who help me feel connected to things.

However, I am no particular authority on this, not all important disability blogger will have appeared on my radar and I'm bound to have forgotten some of those that have. I've also struggled to categorise these in any meaningful way. So it occurs to me, maybe other folk can blog their own lists of important disability bloggers. Hmm... I have vague amorphous thoughts about compiling a gigantic map of the disability blogosphere, but as I say, poorly weeks. Please at least comment with links to important bloggers I've forgotten. Right...

Penny at Disability Studies, Temple U., was one of the first bloggers on disability I encountered, a real community blogger who writes fascinating posts about disabled people in history and initiated the monthly Disability Blog Carnivals (the most recent having been at Butterfly Dreams).

I think the best academic disability bloggers are the great Ira Socol who wrote The Drool Room and blogs at SpeEdChange, frugal feminist Irational Point at Modus Dopens and Deven Black at Education on the Plate. Someone I regard as academic because she write seriously about autism research and psychology is Lindsay at Autist's Corner. Ballastexistenz and Bev at Square 8 are perhaps the most prominent bloggers writing about neurodiversity.

The most glamourous disability bloggers I know are Wheelchair Dancer (who is a professional dancer, funnily enough) and writer and TV presenter Mik Scarlet at Scarlet Sees Red. Two very important writers on disability are articulator-of-pain Elizabeth McClung at Screw Bronze and Dave Hingsburger at Rolling Around Life. Poet Cripchick has been a pivotal in the disability blogging community, but has been quiet since November. Hope she is okay.

Entrepreneur and bride-to-be Mary at This is my Blog writes honestly and engagingly about a huge range of personal-political issues. Wheelie Catholic writes about politics, post lots of links and videos as well as moving pieces about everyday greatness and injustice. Lawyer and sometime revolutionary Mark Siegel at the 19th Floor writes about disability in culture and US politics, as does Imfunnytoo at Midlife and Treachery and Stephen Kuusisto at Planet of the Blind. William Peace at Bad Cripple is another American writing especially about medical ethics, as well as recently charting his own ill health with considerable courage and candour.

Two of the UK's most prominent and prolific disability bloggers are nautical knitter Emma at Writer in a Wheelchair and death-walking diva BendyGirl at Benefit Scrounging Scum, who were the ring-leaders of the recent One Month Before Heartbreak. BendyGirl also started the Broken of Britain blog, collecting stories of disabled people affected by UK benefit reform. They both in turn write for Where's the Benefit? about UK disabilty benefits, as does writer and sweetheart of the twitterati Lisa at Lisy Babe's Blog and Incurable Hippie who blogs at Incurable Hippie's Musings and Rants as well as The F-Word on occasion. Other important British writers on disability include kinky Claire Lewis at Disabled People Fight Back, Sara at Same Difference and brevity being the soul of wit, Katie at Everyone Else Has a Blog.

I don't actually think of these as Mommy Bloggers, but these ladies are all joyful and articulate parents of disabled children; Starlife at Life Decanted , Stephanie at Embracing Chaos and Maddy at Whitterer on Autism. Casdok at Mother of Shrek has a 22 year old autistic lad.

The now defunct FWD/ Forward: Feminists with Disabilities blog will remain an important resource long after the cobwebs are formed. Former contributors include another academic Anna at Trouble is a State of Mind, US military veteran Ouyang Dan at Random Babble, Annaham at Ham Blog and Lauredhel at the big Austrailian feminist blog Hoyden about Town. There are lots of different feminist voices at Womanist Musings but Renee who runs the blog frequently writes about disability and how it intersects with race, gender and size. Bint Ashama at My Private Casbah is another important writer on disabiliy and race.


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This second section doesn't mean to imply inferiority, but these are different kinds of blogs which contain different kinds of content and may be more specialist that those above. This is a difficult excercise so please forgive my struggle to categorise.

CDeb by Stephen WhiteheadNever That Easy and Diane at A Stellarlife are great writers about living with chronic illness.

Other academic bloggers who are worth reading about disability who I haven't mentioned above include Lilwatchergirl at Through Myself and Back Again, Naomi at Uncovering the Roof, Lili at Silly Legal, Miss Shuguah at Fumbling About in the Dark and Kethry at Urbania to Stoneheads who has recently returned to education.

Gary at AWTS, James at A Pretty Simple Blog and Makayla Lewis are the people to read about web accessibility.

Best disabled photographer I know of is my own amazing Stephen who blogs at Single Lens Reflections. Other disabled creative types include Rachel at Rachel Creative, Cusp at L'Ombre de mon Ombre, Katya Robin, Gaina at The Mouth on Wheels and embroiderer Elmsley Rose. See also the Disability Arts Online collection of blogs.

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There is, of course, plenty disability community activity outside blogging, on Twitter, Tumblr and on forums and social networks throughout the web. But I think these folks I've listed here are a good place to start.

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Wednesday, January 19, 2011

Your Kicks For Free

Censorship, within the arts, is almost always a very bad thing. Art not only makes our lives much more enjoyable; we use art as a mirror in whose reflection we can better understand ourselves, our lives and the world around us. I don't really need to defend art or variation within it. Where art is stifled by censorship, life itself is stifled.

And alas, art has to mean everything. Everything anybody calls art, music, drama, creative writing, even if to our own eyes it lacks all merit. This is not to say all art must be revered or indeed given any time or space at all, but it must be protected from interference. And freedom of expression is always a too way thing – we have both the freedom to express ourselves and the freedom to access those expressions.

A far more worthy post than this one would be about budget cuts to the arts in the UK, both in direct arts funding and in education, as well as the closure of libraries and all sorts of other heinous crimes against our culture being committed at this time. But I feel I am a blogger in rehabilitation and I need to pace myself. So let me start with Dire Straits.

When I first heard that Canadian radio stations will now only be allowed to play a censored version of Money for Nothing by Dire Straits, I thought it was a bit ridiculous. The song (unedited version here) is about a removals gang who envy and mock the easy and hedonistic life of rock musicians, referring to one of the musicians as a faggot. This context is self-evident from the lyrics. It's rock musicians mocking their own self-image; the irony is not at all subtle. And it is a classic song.

Sparky wrote about this and has been quite upset. Some folk who are against the censorship have used the opportunity to use the offending word repeatedly and mockingly. Others have attempted to defend the word as inoffensive and still others have used the events to attack gay men as tyrannous and over-sensitive - all those classic rants about political correctness. And reading Sparky's considerable discomfort at the debate (if it can be called a debate), I swung towards his position.

And this brings us to an often neglected but vital part of freedom of expression. Part of the freedom to express oneself is the freedom to be silent. Artists have the right not to make art, the media have the right not to publish or broadcast things. And part of the freedom to access art is, for lack of a better way of putting it, the freedom to remove oneself from the experience.

Nobody has a right not to be offended, but people do have a right to opt out, within reason, of listening to or looking at things which offend them. This is why what is allowed on a billboard is quite different to what is allowed between the covers of a magazine – most people who pass have no choice but to at least glimpse the billboard, whereas a magazine must be bought and a page can be easily and swiftly turned to hide offending words or images. All mediums have different responsibilities according to how active or passive a person has to be in order to access the art.

There are lots of situations where you can't opt out of listening to a radio. In various places of work, in stores and restaurants, in taxis, even in the streets in the summer when folk have the volume up and their windows open. So where a word is well-established as being both offensive and discriminatory, then maybe it is fair enough to keep it off the radio? It is extremely easy to access uncensored music, so nobody is really missing out.

But I'm not entirely happy with this. The biggest problem with this kind of censorship is inconsistency. Sparky wrote a bit about this too, and lists some bizarre examples of words which have been deemed unpalatable. It's a very small list of words which are totally offensiveness in any context *. One of the more difficult words for me to hear is bitch, which is often used in deeply unpleasant contexts, but I've never been upset by Elton John or Meredith Brooks singing it, where it is self-referential. Context does matter with many offensive words, if not all of them.

It isn't such a challenge to edit out individual words, but there are songs where the entire lyric is homophobic or misogynistic or otherwise hateful. This is both far more problematic and usually very difficult to define - at what point does a song about a heartbroken man cursing all womankind slip into actual misogyny? Homophobic songs, at least all the ones I can think of, tend to have such a profound lack of subtlety that they are swiftly identified and more or less removed from radio playlists. There are entire genres of music where misogynist lyrics come as standard.

I have to say that I would distinguish between these arguments, about offensive discriminatory words or content, and arguments about art encouraging certain behaviour - like Money for Nothing encouraging people to use the slur within it. I think the argument that some people can't understand the ironic usage and would think it gives them license to use such language is the top of a very slippery slope.

Art is often about emotional extremes, including hate and violent inclination. There have been lots of popular songs about romanticised murder coming through from folk music, sometimes sung from the perpetrator's point of view. Violence has always featured in gripping and moving narratives, without calling us to violence. That issue is not uncomplicated of course, but this issue of art corrupting our minds is more dangerous when it comes to our freedoms of expression.

Anyway, I don't have a particular conclusion here because I'm still pondering it all myself.


Incidentally, this matter is a million billion miles from the nonsense about taking the N word out of Huckleberry Finn, which has been written about very eloquently elsewhere (such as here). In summary, when a book is being used in education, context is everything, and removing the word dilutes a vitally important context

* My wee nephew was singing a somewhat illegible nursery rhyme and I tried to identify it using Spotify. On one album of nursery rhymes I spotted P*ssy's in the Well. Which did make me giggle. Proving that censorship itself can corrupt young minds – chiefly my own.

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Saturday, January 15, 2011

One Month Before Heartbreak: Judgement Day

One Month Before HeartbreakMore or less cross-posted at Single Lens Reflections

I've had a very busy and exhausting week, but really wanted to participate in the One Month Before Heartbreak blogswarm, campaigning against UK disability benefit cuts and in particular, the proposed abolition of Disability Living Allowance. But I haven't been able to write anything. I was lamenting this to Stephen and we decided to have a IM chat about it and use that, however it came up. So it is a little cringe-worthy, but better than nothing.

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Goldfish: A few months ago, I mentioned to my new GP that my DLA was up for renewal. He warned me that if I got turned down, I shouldn't take it personally - he knew many people who were being refused now, despite having very severe impairments. I know not to take it personally, of course, and yet the current system, political rhetoric, media coverage and the tone of proposed reforms are such that anything we have to do with disability benefits feels very very personal.

Stephen: And indeed it is personal. As much as it'd be nice to live in a communists utopia, we need money to live and as such are reliant upon national insurance to pay out for our survival. But not only that, we, the disabled, are made to jump through hoops to determine whether or not we're capable of work. Which is especially galling when the hoop jumping can be as difficult or impossible as work.

Goldfish: "The disabled"? You're proposing to put this on my blog, honey.

Stephen: You know me - I call a spade a shovel. Dear reader, please forgive my horrendous grasp of correct terminology. I care about you all deeply, even though I'm insulting you at the same time.

Goldfish: Anyway.

Stephen: Anyway.

Goldfish: I think another thing which makes it so personal is the fact that politicians talk about the workshy and other variations on the undeserving poor, the media take that a step further and render most of us scroungers or cheats, but then people around us use the same language - worse language even than "the disabled". They talk about welfare cuts as a universally good thing because of the scroungers, because of the so-called disabled. And if they notice your discomfort, they insist that they don't mean people like you.

What they don't realise is that almost all claimants are people like you, and me. And we're not magically protected from the effect of cuts just because they happen to consider us worthy of protection.

Stephen: Okay okay not so subtle point taken. People who might not be quite so able but who are still dashingly handsome and/or ravishingly beautiful are, indeed, clumped together. I mean, the DLA form itself is only really relative just so long as you stick to a certain set of disabilities. If you're outside of those pre-defined multiple choice answers then you have to write a huge amount to try to explain why you don't fit in and yet why you still need this money.

Goldfish: And I imagine most people are outside those boxes; most disabled people aren't full-time wheelchair users, don't experience total blindness or deafness etc..

Stephen: Do you think that the forms mirror public perception? The good disabled person who's deserving of the money that they so generously donate from their children's piggy banks is the one who answers all those questions by ticking the top most box (and who, sadly, but also thankfully, might not live too long and so not be a long term financial drain)?

Goldfish: In fairness, I don't think the public feels very generous towards those who tick the top box of the mental health questions.

Stephen: True...as we saw recently in the aftermath of the Giffords shooting. The stance of Sheriff Dupnik was that the world was a safer place with the mentally ill locked up rather than integrated into the community. So our ideal disabled victim (because surely they are a victim - of a random virus, a terrible car accident [just so long as they didn't cause it] or, if possible, falling from a height whilst trying to save a poor little girl and her kitten from a tree house fire) is a full time wheelchair user, possibly also blind, very grateful and entirely sane. Is that even possible?

I'm not sure I'd be that sane after all that bad luck.

Goldfish: *rolls eyes

Stephen: What?

Goldfish: I will have to apologise to any heroic blind wheelchair-users who pass by my blog now.

In any case, we were talking about this issue of how difficult it is not to take this stuff personally. You've been trying to sort out your exam conditions for your final university exams.

(Do you like the subtlety there? - I should work on daytime TV.)

Stephen: Indeed. I'm studying for a BA in Classics via distance learning. Because of the setup, it's 100% exam graded. As you can imagine, that means that come exam time there's a considerable amount of pressure. Indeed, for the last few months I've been hell to live with, isn't that right, Darling?

Goldfish: Hades, sweetheart - I thought it was Hades?

Stephen: I've failed already. Anyway, because I'm a person who might not be quite so able but who is still dashingly handsome and/or ravishingly beautiful (or a PWmnbqsAbwisDH/RB to those in the know) I need some help when it comes to exam time. I get to take my exam locally, for example, rather than having to travel to London. And I am able to use a computer keyboard rather than handwrite. And in order to qualify for these I have to get a doctor's letter explaining that I'm a PWmnbqsAbwisDH/RB and so should be allowed these things. In my first year the system was so poorly set up that I wasn't aware as to whether I was going to get the special arrangements or not until two days before the exam.

So although I got the help I needed to make my chances as fair as the next wannabe classicist, I had a considerable amount of extra stress that none of the other candidates did.

Goldfish: (Incidentally, dear reader, he has not been at all difficult, only has occasional flashes of self doubt, such as "I've failed already." What this man doesn't know about the motivations of Ajax when he set upon his "wooly captives" is not worth knowing. )

(That's the lesser Ajax, by the way. Or is it the greater one?)

Stephen: (Greater)

Goldfish: (Okay)

Stephen: (You know when I said - could you take the exam for me..?)

Goldfish: Anyway

You were trying to make sure the exam conditions were sorted for this May, love. And like any large institution, the wheels were turning very slowly...

Stephen: Yes. I had been told that there would be no need to reapply, but things have changed and now I have to get a new doctor's letter. Of course, getting an appointment with the GP isn't that easy and I've got that booked for just over a week away. The expectation was that I should be able to get a letter posted off to them instantly, so straight away I wasn't conforming with the idea of what I should be doing.

Then there was the issue of a local exam centre. If you're one of the idealised disabled, the process of getting to London *shouldn't* be a problem. But for me it's impossible.

But the problem is...the people in the special needs department haven't specifically questioned these things. They just mentioned them (in, I think it's fair to say, a rather clumsy way. Even more clumsy than my terminology. Yeah, I know, I didn't think it was possible either). The problem is that I feel under pressure to conform to ideas of what I should be capable of doing. I feel that I am being judged. And, well, I *am* being judged. Someone has to look at my medical evidence and say whether what I'm asking is appropriate. But that's a horrible position to be in. Especially when I am actually paying for the privilege of taking the degree!

By the way, dear reader, Deborah's just popped to the loo. So we're alone now. We can talk about whatever we want! Have you seen the new Mercedes SLK? What do you think of the front end redesign? I'm afraid it's a bit too clunky to me. that sort of front heaviness works on the SLS, but then that's an entirely different vehicle...

Goldfish: Sweetheart, I think you are getting distracted.

Stephen: Er...yes, maybe.

Goldfish: When you got that e-mail from the Special Needs people, you said that you felt that they were suspicious of you?

Stephen: Yes. Well, just the act of asking again. When you're living with something, especially a disability, it leaves you very sensitive to any mention of it. Or it does me. Being told that they would collect the information so that they could make the 'right decision' upset me. What is the right decision? Is it right for me? For the university? For the world in general?

And what's right got to do with it?

If the world were right I'd not have to be dealing with extra process to get to a point of equality.

Goldfish: And I tried to reassure you that they probably weren't suspicious of you, just clumsy and uncreative in the way big institutions often are. But this is how we're made to feel. Like every need, however simple, has to be justified.

And this is the case in many areas. Lilwatchgirl is going through this with Access to Work, you've got this with your exam conditions, but I think it all comes down to the way that we talk about disability in society.

And so much of that is to do with politics, and so long as disabled people are a political scapegoat, so long as money-saving measures are so often focussed on us and how expensive we are, then people are going to think that it is the natural order of things that we have to justify our existence in that society.

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Thursday, January 06, 2011

Bad Legs versus The Stairs

I accidentally pressed publish half way through writing this, so folks reading my feed may have read an unfinished post here earlier - sorry!

Describing myself as disabled for the first time was one of the single most liberating experiences of my life. It was the next best thing to being cured of my illness. This is difficult for lots of people to understand, including some disabled people. The thing that enabled me to acknowledge my disability was the Social Model of Disability. I'm not going to write a primer for that here (I tried before), but this months Disability Blog Carnival is about freakiness, and this post is about how raising the freak flag can enable you to feel less freaky.

There was a point where my bad legs gave me problems getting upstairs. My condition causes my legs to hurt all the time, more so when I have my weight on them and very much more so when I attempt to climb steps. I was the problem. And this was how I saw my role in all the difficulties I encountered. There were all sorts of things that were difficult to do because I hurt, because I had this problem or that problem, even because I had a problem that other people couldn't understand and were reluctant to accommodate.

Then I realised that the problem was that stairs disagreed with me. I think this is the best way of putting it. Rather like when people are told they have food intolerences - really, it makes more sense to say that food doesn't agree with them; the food makes a ruckus travelling through their bodies when the person themselves was quite happy to live and let live. I have nothing against stairs but they pop up and get in my way. I am perfectly capable of moving between levels if there is a ramp or a lift. Where I can't access areas of a building, the stairs, not my legs, are the problem.

This is not to say that all stairs are wrong or that every building that exists can or should be made fully accessible, but where there are stairs and nothing but stairs, this is a problem that must be born. I am not a problem that the building (or those who have the power to do something about it) have to work around. The stairs are a problem to me and other people. Not even people like me, but people with all kinds of physical variation.

And thus I am disabled. Obstacles exist, attitudes exist which impose unnecessary limitations on my life. Disability isn't something I have, it is something that happens to me.

So why was this realisation the next best thing to being cured?

My illness suddenly became much more personal and private. My illness had nothing to do with the obstacles and attitudes I came across. The fact that my condition is invisible, fluctuating, a little medically mysterious, none of that stuff matters in terms of my interaction with the world. The world sometimes has a problem with that stuff, but it is the world's problem, not mine.

So for example, the stairs. My illness isn't the problem with steps. If they invented a magic cure for the Dreaded Lurgy, then there would still be people with other conditions that cause pain when climbing stairs - including some of the most common effects of aging. Then there are conditions which make folk unstable and prone to toppling over when climbing stairs. Then there are legs that don't work at all, don't bend or straighten and cannot hold any weight. Then there are legs that aren't even attached any more. That's a great number of people, to say nothing of those non-disabled little people who have not yet learnt to walk and so need carrying or pushing in prams. In any busy public building which caters for a cross-section of society, steps and stairs are likely to cause an obstacle to several people every day.

In other words, whatever happens with my health, the stairs are still a problem. If I am able to build up my strength so that I can move about more comfortably, then the need for accessible buildings wouldn't go away. My personal ability to climb stairs has varied greatly over the course of my illness, but their disabling effect hasn't changed.

My identity as a disabled person is a very public thing, whereas my illness is very personal. And this gives me far greater freedom about how I deal with my illness. I have written before about the Sick Role and the obligations one feels when one identifies as an ill person. You are obliged to appear ill, to convince others that you are ill, to try to get better and to convince others that you are trying to get better. It is almost as if you end up apologising to every flight of stairs you meet, as if there is some bargain between you that you have failed to keep.

But since it is stairs and narrow doorways and loud, bright environments and most of all other people are the cause of the inconveniences I experience, I have far greater freedom in my attitude towards my illness. I am allowed to hate it or not mind it. I do not have to put on a brave face, nor do I have to see it as a tragic.

So for example, to be honest, I don't mind not being able to walk about very much. It is far bigger problem that I can't drive, which is mostly down to cognitive symptoms. If I could be rid of my cognitive symptoms, and still experience chronic pain (at this level) and mobility problems, my life would be a lot better. During periods where my pain has not been so well managed, I have longed to lose my legs rather than experience that amount of pain. These aren't socially responsible attitudes - if I wanted to be more convenient to other people, I would first want to walk normally, then to be able to work normally and so on.

Most of all, I don't have to mind the difference. Because my difference is no more extraordinary than lots of other differences, including those which have nothing to do with medical problems or physical impairments. However I feel about my illness myself, to the rest of the world this ought to be a neutral fact, like my height or the colour of my eyes. The fact it isn't is what makes me disabled.

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