The Disability Identity: Why It’s Not The Answer To Your Prayers
The only person that’s disabled is the person that thinks they are.
I met a wonderful woman this week, and that’s what she told me. Context, she’d broken her back in 1992 and now is walking unaided, with very little visible evidence of this experience. I’d like to say I’m usually pretty good at picking up on the signs of someone being in pain and this woman had almost none. I didn’t press her about the recovery as I know that for an ablebodied person to acquire disability it can be quite traumatic.
In the disability community, we tend to shy away from the negative parts of impairment and disability. It’s okay to acknowledge that some parts of impairment suck. When I was no longer able to ride a bike, it sucked. When you lose some of your independence, it sucks. Collectively, we spend so much time trying to challenge the tragedy view of disability that it can be hard to admit sometimes things aren’t rosy. It’s like if you concede you open the doors to people pitying you, undermining your rights, making decisions for you and the risk of discrimination again. That’s too much pressure. We should be able to admit freely when something sucks without ablebodied people removing your personhood. But back to the wonderful lady.
She was a wheelchair user in the UK before the introduction of any disability legislation. Her accident happened when I was still crawling around having my outfits changed twice a day because my mom was thrilled to finally have a girl. She told me of going out to the pub and being told that she couldn’t be there because her wheelchair was ‘upsetting other customers’. How did he get away with that? I was horrified. Bartenders can refuse service to anyone. That was commonplace at the time. Again, a culture shock. I grew up with disability legislation in place so to be reminded that in recent living memory people were marginalised more than they are now was helpful. I was well put me in my place. It’s a challenge to remember that my experiences are not the definitive experiences of disability. What I have learnt is not necessarily right or wrong because conclusions drawn from experiences don’t always fit on a binary black and white scale, or into neat little ‘yes’ and ‘no’ boxes. So, I listened. I didn’t agree with everything I heard but I continued to listen. If you believe in epistemic privilege you have to shut up and let people talk. So I did.
When talking about her injury in 1992, she cited healing as a huge part of her recovery. I knew she was talking about faith healing as in other elements of the conversation she used tell-tale phrases such as, “God led me here”, and “This experience feels really spirit-led”, “I’m excited to see what God has in store for me.” Now, I know I’m not a detective, but drop those phrases into conversation and I may believe you have fallen into contact with Christianity at some point in your life.
I am always careful to refrain from calling disabled people inspiring, but I found her approach to her medical health a source of positivity. Her joy overshadowed what I perceived to be her pain. Notice my wording — I’m not making assumptions about her pain, for all I know she may have an atypical nervous system and not even have a concept of pain. When I say ‘what I perceived to be her pain’, I’m saying that based on my life experiences I am thinking about what I would do in that situation and projecting onto her. I’m not having the audacity to believe that my presumptions are equivalent to her truth. For example, I would not be able to recant my medical experiences without an extreme level of bitterness in my voice, whereas this woman was just a pleasure to talk to. So, when she said that she didn’t consider herself disabled I bit my tongue and listened to her experiences. Then, she said it.
The only person that is disabled is the one that thinks they are.
Everything within me has this immediate urge to correct people when they are wrong (according to me). I can be an insufferable know-it-all with an inability to accept I am wrong if I’m not careful and if I don’t pay attention to people around me. I’d dive in and think, “Here I am, Queen of All, qualified to tell people what it actually means to be disabled!”
Truthfully, I can’t. I could go on about how much of a negative stereotype that perpetuates, even though I could understand her point. I could rant on and on and at the end of it, neither of us would be better off. What disability is cannot be pinpointed down to a singular experience and how I have lived has definitely framed how I view the world. To break it down further. One in ten thousand people in the UK have the same diagnosis as me. The other people with my diagnosis have lived incredibly different lives so even when taking a particular category such as impairment type, lived experience varies greatly. You cannot make assumptions. Know someone with CP? Great. The next person you meet probably doesn’t give a flying monkeys about it as there is likely no relevance to their lives. Don’t get what I mean?
Imagine you’re walking in the street carrying your handbag, you got to get on a bus. A person taps you on the shoulder.
“My aunty has a handbag as well.”
Oh. Great. Okay. Good for her. Have they finished? No. Instead they launch into a tirade about how their aunt secured her handbag, matched it to her jeans. Oh, but I never wear jeans. That information will not be relevant to me. Okay, well I can’t say that because this is a kind stranger. I don’t know them from Adam or Eve. Suddenly you’re trapped in this hugely awkward conversation with a stranger about handbags, which the person thinks you care about just because you’re carrying one. Some people can handle this and small talk till the cows come home. Others can’t. But the whole conversation was based on the assumption you’d somehow be interested because you own a handbag.
Everyone’s experiences are different, and my assumptions are not a strong enough foundation to justify a correction, and also — it is probably not my place to correct them. What is a truth for me may not be a truth for my neighbour, or my colleague, or even others within the disability movement. She told me that she didn’t see herself as disabled, and interestingly she said she thought that the ones who are calling themselves disabled are the ones ‘milking’ it. I have a sneaking suspicion it is a result of negative connotations and the particular language around the word disability that leads some people to dissociate from the identity and the community but what hurt the most was the suspicion. The idea that if you claim a disability identity you’re faking it for the benefits etc. For all I know, that might not be what she meant. I want to reiterate that this woman was probably the nicest person I’ve met in the last five years, and had a genuine spirit of happiness about her. Less than 1% of benefit claims are fraudulent. But someone we’ve all got this assumption that benefit thieves are stealing our money, and not people like Vodafone with a £6bn tax bill due from the profits of our consumerism. The rhetoric is damaging to disabled people. One day I’ll blog about my experiences trying to access benefits but I can’t today. It is and was too traumatic for me. It wasn’t the worst experience of my life but it’s right up there with them. Do you know what it is like to have a callous piece of paper tell you that you can’t have benefits and know that your fellow people are okay with this because Ian Duncan Smith (IDS) was given ten years to spread lies and misinformation about people like you whilst systematically abusing your rights? Without a car, I cannot live my life and do the things a good disabled person is supposed to do: work, get a job, earn and pay your way. Put me on public transport for a week and you’ll see a nurse at the Royal Orthopaedic Hospital checking her watch and waiting for me to be brought in. Of course, that doesn’t mean I get the benefits to enable me to get a car. The additional expense caused by having to drive everywhere I want to go has put me into poverty before and is always something I’ll be a risk of because of my disability. I guarantee you, I’m not faking that and I’m not milking that. It takes a lot to accept that you need benefits, particularly when you know IDS is in charge and people are literally dying trying to get benefits, to access rights that the UN and European Human Rights Commission says we’re entitled to. An application for the personal independence payment is a risk to your health and livelihood. As far as I’m concerned, you don’t milk that. Disabled people think differently though. Not everyone thinks like me, and there’s internalised oppression. It’s not always easy to recognise internalised oppression. We’re taught that the ‘other’ is so terrible we can start to believe it, even about ourselves. That doesn’t just apply to disability by the way. That can apply to any minority experience. Assumptions about experiences lead to mistakes like IDS being put in charge of anything. Ever. If I ruled the world, I’d undo everything he ever did to demonise the most vulnerable in this country, get rid of the Daily Fail and teach people to be more aware of everyone else. Sadly, I don’t.