Tuesday, January 12, 2016

On Loss & Chronic Illness - Denial

Content warning for brief references to self-harm, discussion of bereavement and psychological abuse.

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:

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. Do as much as you can. Keep going. Have a go, even when it hurts. Stay positive.

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.

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.

Here are some ridiculous things I did in that third year:
  • 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.
  • 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!
  • 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.
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).

She has to get better. She deserves 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.

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.


On the 26th 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 Kubler-Ross model of coming to terms with loss which, though imperfect, covers all the bases; the process of denial, anger, bargaining, sadness and acceptance.

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.

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.

Of course, everyone experiences loss, but the loss associated with illness complicates regular loss - if only I wasn't ill, things would be different, maybe this might not have happened, maybe this would be easier. 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.

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.

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.


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.

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 keep positive. 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.

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.

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 twelve thousand pounds a year 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.

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 weakness was basically all the symptoms he'd had before, only with a different explanation.

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.

I describe this as the worst case because, well, twelve thousand pounds a year. 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?

But of course, in terms of stories, our culture loves this stuff.  Illness is something to be fought - Beechams 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 will 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.

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.


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. 

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. 

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. 

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?).

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. 

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.

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. 

Tuesday, October 27, 2015

Freedom from criticism is quite the opposite to freedom of speech.

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. 

This weekend, famous philosopher, author and university professor Roger Scruton was relegated to the obscurity of the BBC News website (link to text) and BBC Radio 4 (link to audio) 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. 
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.”

I was obliged to study Roger Scuton's work as a young philosophy student, so I feel qualified to translate:
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.”

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! .

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: 
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. “

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 adoptionAnd 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.

(Incidentally, Scruton is the co-author of the article Same-sex marriage is homophobic. So he's right about at least some people abusing the word homophobia for the sake of their own particular arguments.)

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, someone 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 real social costs.

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.

To say so isn't silencing him. 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. 

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. 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.

"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. A lot. 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.

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 no-platformed. Student Unions are not obliged to provide platforms and audiences for anyone who feels they have something to say.

Cardiff University said they did not endorsed Greer's views but would not stop her speaking. 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).

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. 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; hurt feelings

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 Rachel Melhuish who set up the petition against Greer's talk?), suggests something about the way freedom of speech currently works in our culture.

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 people shouldn't say that. Language is tremendously important. The way women, men and minorities are spoken about and represented is tremendously important.

When I say, “People shouldn't say that.” I absolutely mean it. This isn't the same as saying "People shouldn't be allowed to say that." let alone "People should be arrested for saying that." 

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.

This has limits and those limits should be obvious. 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 they have less recourse to justice.

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.

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.

Meanwhile, this last week, while Scruton and Greer were speaking without opposition in the national press, it was announced that there will be a new register, 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 Prevent Strategy 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 Bahar Mustafa was charged 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. 

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.

Freedom of speech is a vital aspect of a free society and something we may always have to fight for. To reduce it to the freedom for powerful people to express their prejudices without meeting the disapproval and criticism of others only distracts from and undermines the real battle taking place. 

* 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).

Wednesday, September 30, 2015

Who 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!

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 The Perfect Hair Problem; 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.

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 Alexander. 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 St Trinians movies, Hairspray, Orlando etc.).

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 sexy lamp, the girl. 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 the girl 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 comes out of her shell), it might start a revolution.

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 Eddie Redmayne’s casting as Stephen Hawking in Theory of Everything 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 Lili Elbe. Rinse and repeat.

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. The Fast Show’s parody of Forest Gump is almost twenty years old but the same movie is still being made right now:

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 Theory of Everything. This is only because almost every damn story with a disabled protagonist features the acquisition of impairment as a central dramatic narrative. Disability remains a metaphor for film-makers, 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.

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.

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, very tall men are over-represented, 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 Stonewall, supposed to be depicting the Stonewall Riots, invents a macho young white cisgender male hero 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, Aloha, a film set on Hawaii with only white protagonists, including a white woman who, conveniently, is not supposed to look like she possesses the Chinese and Pacific Islander heritage of her character.

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. Ridley Scott defended his Exodus: Gods and Kings (a film where Ancient Egypt is run by white people);
"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."
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.

(Please read this by Jon Ronson speaking to Middle-Eastern American actors about their chronic type-casting as terrorists - it is both hilarious and tragic.)

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.

In this post I've concentrated on film because television does much better. Television increasingly features transgender people in trans roles, 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.

Friday, May 01, 2015

Blogging Against Disablism Day 2015

Blogging Against Disablism Day, May 1st 2015Welcome to Blogging Against Disablism Day 2015!

Thanks very much to everyone who helped to spread the word and to those who have already taken part.

If you have a post for Blogging Against Disablism, please leave a comment including the URL (web address) of your post and the catergory your post fits best. Please also link back here, wherever possible (we're at http://tinyurl.com/BADday2015).

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 @BADDtweets and these will automatically be posted onto our Facebook Page.

Round-up Posts

Alice Wong:  Tweets from #BADD2015

Blogging Against Disablism 2015

(Disability discrimination in the workplace, recruitment issues and unemployment). 

Smiffy's Place:  My Annual Rant

(Attitudes and practical issues effecting disabled people and the discussion of disability in education, from preschool to university and workplace training.)

Academic Editing Canada:  Ableism, Academia & Science Fiction 
AZ is Amazing:  My ideal classroom
Deaf Student:  Disabilism in Higher Education
Limits Not Included:  Prove it
Paginated Thoughts:  One of the Lucky Ones?
The Autistic Anthropologist:  Blogging Against Disablism Day 2015
Turtle Is A Verb:  Internalized Ableism
Yes, That Too:  Late for Blogging Against Disableism Day
Friendly Crips & Our Friends: So you want to inspire young people? If you're disabled, don't bother

Other Access Issues
(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.)

A Barnsley Historian's View:  Renewing my Disabled aka Concessionary Bus Pass (or not?)
Andrea Shettle's Tumblr:  Access is NOT a luxury 
Beguine Again:  We Interrupt This Story to Blog Against Disablism 
Crippled, Queer, Anglo-European Ranter:  Dis/Ablism in Benalmádena
The World of Accessible Toilets:  Why don't NHS hospitals have accessible toilets?

Definition and Analysis of Disablism/ Ableism

Most Usually Unusual:  The “Acceptable” ism
The Glitter Notebook:  Why the word “disablism” should be in the dictionary

The Language of Disablism(Posts about the language which surrounds disability and the way that it may empower or disempower us.)

Diary of Mister Goldfish:  The God of Sleep

Disablism Interacting with Other 'Isms'
(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..)

allthesoftplaces:  Thoughts on the Intersections of Capitalism & Ableism
A Very Bitey Zebra:  Look left, look right, then look left again
Radical Neurodivergence Speaking: 
BADD 2015: #blacklivesmatter, #freeolinka, & intersectionality reminders
The F-word:  Gender, health and responsibility

Disablism in Literature, Culture and the Media

A Writer in a Wheelchair:  Third Time Lucky
Never that Easy:  Where I talk about Fanfiction and Comics, a lot, and you probably roll your eyes
People Aren't Broken:  CripFace
The Note Which Do Not Fit:  Characters with Disabilities in the Condor Trilogy
This ain't living:  Oscarbait
Words of Realms:  Doctor Who and Disability
yetanotherlefty:  Dressing While Disabled


Disability Studies, Temple U.:  Wikipedia Against Disablism, Part 2

Relationships, Love and Sex

Kink Praxis:  Being a Disabled Top in Kink Community


Black Telephone:  Just Keep Swimming


Ballastexistenz:  To All The Children In Severe Pain Tonight
Murder of Goths:  A Game of Spoons
Part of a Whole:  Disability's Biggest Challenge

Art, Poetry and Fiction against Disablism

After the Rain:  Schooldays
Amelia Evelyn Voicy Baggs:  Poetry for #BADD2015
Crippled, Queer, Anglo-European Ranter:  We Live - Art for #BADD2015  (NB NSFW)
Embrace Different:  Untitled (Link 2, Link 3)

General Thoughts on Disablism

Deescribes:  Practicing Pride
More than my Size:  Spoooon!

Parenting Issues(whether disabled parents or the parents of a disabled child.)

This Is My Blog:  Progress

Impairment-Specific Prejudice

Deaf Student UK:  I’m deaf, I’m not disabled! Why should I do this? 
Living Blind Blog:  Five Things to Remember if You Know Someone Who's Blind
People First England:  Bloody Skegness!
That Crazy Crippled Chick:  My Most Visible Disability Has the Least Impact on Me (No, Really)
This is M.E since yesterday:  INVISableism

Personal Journeys

Posts about learning experiences and realisations authors have had about the nature of disability discrimination and the impact on their lives.

Bigger on the Inside:  A Farewell to BADD
Feminist Sonar:  Home Again
Journeymouse:  Is It Time To Retrain… As A Fish?
Life at Full Tilt:  Vesuvius on Wheels
Mary Caroline:  Friendly Reminder: I’m Still Ill
Scribbling on Seashells:  Do Not Deny Me
Sickness and ME:  Impermanence and the Gift of Human Suffering
The Social Worker Who Became Disabled:  Don't put me in a box: reclaiming my narrative
Thoughts from an Autistic Vegan:   Combatting Negative Media Messages

Disablism and Politics
(For example, the political currency of disability, anti-discrimination legislation, etc.)

A CRPSy Life:  Dear Mr Cameron, from someone who's life is no life at all
Dannilion.com:  Scared of the Government
Liberal Democrat Voice:  To be free from poverty, ignorance and conformity, our society must have robust support for disabled people
Lisybabe's Blog:  How many politicians does it take to throw 18% of the population under a bus?
Rolling with the Punches:  A Call to Union
The eGremlin:  Don't shove me into your stereotypical box 
Where's the Benefit?:   Manifestly Abusive

Bullying, Harassment and Hate Crime

Christopher John Ball:  What are YOU Looking At?

Disability, Life and Death

Sticking the Corners with Jennifer Fitz:  Don’t Kill People with Disabilities. Especially Family

Healthcare Issues

Nightengale of Samarkand: If you erase all the wrong stuff, you'll have plenty of room

Disability in Institutions

Blogging Astrid:  "You Can't Be in Society Like This"
Indigo Jo Blogs:  Sometimes it’s the miles. Sometimes it’s the care. Sometimes it’s both.
Through Myself and Back Again:  Disability and Christian Churches 

Wednesday, April 15, 2015

Blogging Against Disablism Day 2015 will be on Friday, 1st May

Blogging Against Disablism Day 2015 is now underway. Please click here to see this year's blogs.

Blogging Against Disablism Day, May 1st 2015
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.

How to take part.

1. Post a comment below to say you intend to join in. I will then add you to the list of participants on the sidebar of this blog. Everyone is welcome.

2. Spread the word 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.

3. Write a post 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; the discrimination experienced by people with mental ill health is disablism, so naturally posts about that are welcome.

You can see the archives for previous years here: 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013 and 2014.

Blogging Against Disablism Day is not a carnival of previously published material. 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.

4. Come back here to Diary of a Goldfish 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.

We have both a Twitter account @BADDtweets and a Facebook Page where there will be notifications of new posts and updates to the archive during the day.


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.

If anyone has any questions about web accessibility, I recommend the Accessify Forum. I am not an expert on web accessibility myself, so if there are any suggestions about how I can make this day more accessible, please e-mail me at diaryofagoldfish at googlemail.com

The Linguistic Amnesty

Whilst discussions about language and the way it can be used to oppress or empower us are more than welcome, please respect the language that people use, 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.

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 for disability equality, then feel free to do so.

I've written a basic guide to the Language of Disability which I hope might explain some of the thinking behind the different language disabled people prefer to use about themselves.

Links and Banners

To link back to this post, simply copy and paste the following code:

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. If you already have the banner, you just need to change the URL that it links to from last year's BADD. 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.

Blogging Against Disablism Day, May 1st 2015This is the black and white banner which reads "Blogging Against Disablism". Here's the code for the square one:

And here's the code for the narrower one (which can be seen here):

Blogging Against Disablism Day, May 1st 2015This is the colourful banner which reads "Blogging Against Disablism". This is the code for the square one:

And here's the code for the narrower one (which can be seen here):

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.

Tuesday, March 31, 2015

Of course we'd blame cancer for plane crash deaths

Discusses suicide and stigma of illness.

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
Would we be 'blaming' cancer for the deaths of those people who perished in the Alps?
It has been widely shared in my circles, but I keep thinking, "Yeah, we would."

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.

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?

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".

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.

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 cripping-up - non-disabled actors playing disabled characters, usually to overblown critical acclaim - following Eddie Redmaine's Oscar win for his role as Stephen Hawking in The Theory of Everything. Many of these articles stated that blackface 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 blackface 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.

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.

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:

  • We live in a culture which treats paid employment as the minimum criteria for a decent and valuable human being. 
  • We live in a culture which treats all illness, but especially mental illness, as personal weakness.
  • Folk are afraid to disclose illness to employers, especially mental illness.
  • Employers often don't take illness seriously, especially mental illness.
  • Employers are often freaked out by illness, especially mental illness.
  • People don't always know how sick they are.
  • Other people, including doctors, don't always know how sick a person is.

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.

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).

Monday, March 23, 2015

Mother's Day, 2010

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. 

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.

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.

I made them up. Then a friend sent me to their blog.


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.

A satellite image of the UK in January 2010.
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, my friend Jack 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 Project 365, taking a photograph every day. 

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.

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 (nobody will turn up and I’ll have to pick up the pieces!), 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.

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.

The last two blog posts I wrote before I finished my novel were On Not Being Beautiful #1 and #2. 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.

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.”


During the last month of novel writing, I went a little mad and this madness was that bloody novel. It sounds dreadfully pretentious - suffering for my art - 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. 

This is the sort of thing I got up to at this time.
(A sort of pyramid made up of white blister
packs on top of a wall socket against a red
wall. A tiny metal angel looks on.)
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.  

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 (Can't get no) Satisfaction. I played the Cranberries’ No Need To Argue album an awful lot, just as the daffodils came into bloom. 

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.

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.  

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.”

The next moment, an e-mail from Stephen; How It Ends by Devotchka. I began to listen, thinking, 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! 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.

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 Dawn of the Dead rather than Chopper Chicks in Zombie Town as an allegory for human endurance. The personalities may be identical, but I wrote all that before I knew him. I made him up! I don't want Stephen to think I am secretly in love with him or anything. 

I couldn't say all that. So I wrote around it. At a great length. 


(The bottom of an unsent e-mail, reading
"Got to... click... send... button..")
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.

Then I click send.

Everything has changed. I've written a novel. I am not the same person I was yesterday, when I hadn't written a novel.

Stephen e-mails me with photographic evidence of my novel safely on his e-reader. He then sends the Thomas Truax cover of I’m Deranged 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.

(An e-reader held in a hand.)
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?”

My then husband is thinking about death a lot and imagines I have the same effect on everyone.

It’s Mothers Day. I must spend time with my mother.  

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.

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, 

This is the most important day of my life!

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.

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.

The produce of my imagination has entered another person's subconscious. 


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.

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 love you and I’ll get it back: “I love you too.”

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.

Yet, straight away, I feel lighter. Lighter in a lost and listless way, but definitely lighter.

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.


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 loves it. 

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.  

I believe otherwise.