Sunday, May 01, 2016

BADD 2016: Legitimate Disability

Blogging Against Disablism Day, May 1st 2016Today is Blogging Against Disablism 2016. Please head over to the main page to read other people's contributions.

Hopefully there is audio available for this blog post:

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.

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 slip them in when talking about fictional characters.

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.

This is how the British government have put through a raft of cuts to disability benefits and social care, whilst all parties still insist that they want to provide more for the most vulnerable people. 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.

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.

It is ridiculous, but it remains a powerful and pervasive idea. In the struggle against increasingly negative government rhetoric, the term genuinely disabled 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.

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Ten years ago, when I first started Blogging Against Disablism Day, I had an e-mail exchange with someone who described themselves as transabled. 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 mental health condition (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.

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.

It’s also widely believed 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.

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 content warnings 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?

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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.

Part of this is optimism or denial 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 deserve a wheelchair. 

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. 

For many people, the same thing happens with using the word disabled. 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. 

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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 Becca's blog 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.”

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 hierarchy of impairment, 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.

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 explaining ourselves and our conditions. We can acknowledge disability as a social experience rather that a clinical category. 

2 comments:

Life In Deep Water said...

It's obvious why Stephen take's longer to cross the road. He's ugly and you're the most beautiful thing in the garden my dear! :)

Seriously though, something in this post gave me a touch of the old Twilight Zone heebie jeebies.

People with mental illness - one of the most stigmatised groups of disabled people - seem to struggle with this more than others.

Remember when we 'met' for the first couple of times?

It took me simply ages to accept that I was disabled, although you - and others - pointed out to me, repeatedly, that ill mental health was a disability.

Look at me now Ma, top of the world. Scarily, spooky again. I admit to having to having only a slight physical disability, but a huge mental disability.

Nice one teacher! :_)

Ysabetwordsmith said...

"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."

Well, those things are rarely designed to help people. They're usually designed to LOOK LIKE they're helping, while actually excluding or abusing people as much as possible. Consequently people often choose to avoid them because the cost outweighs the gain. You have to consider your total comfort level: How much abuse or damage can you tolerate in pursuit of getting those resources? Could you do without the thing, or cobble up a version of your own, without having to let people hurt you? And that's not an accident. It's there so they can say "we did what we could but those people don't want help."

Worth distinguishing: "Help" is when you do something that somebody else wants to make their life easier. "Helpiness" in when you do whatever you want, or what you think someone else needs, to someone who needs assistance -- regardless of whether it actually improves anything for them. Nobody wants helpiness, but it's usually the only thing being offered. And when you call it "help" then it creates the mistaken impression that people don't want someone to make their life easier, just because they don't want it made harder.

"For many people, the same thing happens with using the word disabled. 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."

Yep. There are plenty of things that I can't do, but a lot of them are in kind of odd places. I've learned not to bother trying to scale myself on ordinary tests because I'm rarely in the expected range and frequently not even on their map. I tend not to call myself disabled because it's a legal category. But I can describe limitations I have that give me common ground with people in that category.

"We can actively resist a culture which suggests we can gain acceptance by constantly explaining ourselves and our conditions."

You know, we could fix that by collecting all the accommodations into a book. Right now all we've got are brief tipsheets and the ADA regulations. But there are all kinds of other ways to make life easier -- and no efficient way to find those, if you suddenly acquire a disability or hire/marry/meet somebody who has one. Either you resort to the shortlist, you ask a lot of nosy questions that are exhausting to answer, or you bonk into a lot of barriers. It would be so much easier and more effective to collect the stuff that's scattered around the experience of people with disabilities. Then it'd be just, "Welcome to the office, Bob, we got a copy of The Big Book of Wheels. Let us know if there's anything you need that's not in there."