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Disability Erasure: a piece by Pieta Bouma

Ableism is a sneaky creature. She snakes her way into our culture, what we say, how we think, and does so with stealth, so much so that it takes even the disabled sometimes years to notice it’s there. I think people, predominantly those who are non-disabled, are scared of disability. Some of our ableism as a society comes from our fear; if we can minimise disability, tell ourselves it’s just a challenge to overcome, that it’s not essential or doesn’t even really exist at all, then we can all live without the fear of losing our health, mobility or abilities. It’s certainly easier to ignore that even our ability to walk can be taken away from us in an instant.

 

Since becoming disabled, I have noticed this in the way people talk about me. Let me clarify, this is the way well-meaning people, often those who love me, talk about me to encourage me or describe me as an inspiration. How often have I heard, “She doesn’t let her disability define her”, “She overcomes her disability so well”, or even the ‘inspirational’ quote “The only disability is a bad attitude”? At first glance, these phrases don’t seem problematic. They’re certainly not insulting, and the intention behind them is good. But the message behind them is essentially that you can get rid of your disability if you try hard enough or that it is something to be conquered and overcome.

 

Here’s my hot take on it: I will never overcome my disability, my disability is one of the (many) things that define me, and I have a good attitude and (guess what!) am still disabled! These remarks feel to me like a form of erasure. The message is “hang on, you’re not really disabled” or “you are, but we can pretend it doesn’t affect you too much, and that will make us all feel better”. This roots in fear. Disability is still unpalatable in popular culture. People find it hard to accept, and I think some of this is from fear that it could happen to anyone. If one can ‘overcome’ their disability, it is less scary, a solution to be fixed rather than a permanent loss of ability that could happen to anyone at any point in their life or to any new baby born. 

 

This attitude is prevalent amongst both the general public and the disabled community. I see it in disabled people who refuse to identify as disabled, in organisations with names such as “disabled but not really”, in my friends who are so proud of how my disability doesn’t define me. As a society, we are all incessantly pushing away the disabled label, sweeping it under the rug, using euphemisms or reasoning our way into fitting a disabled body into an non-disabled world. How can disabled people ever achieve full social acceptance when even the word disabled is controversial? We need to make peace with our mortality and the fragility of our bodies to accept disability, and disabled people, without trying to minimise the effects of disability by telling ourselves it can be overcome.

 

The messaging at the moment is that being “disabled” is something to avoid identifying with at all costs, that disability is shameful, and if you really are disabled, you should dedicate yourself to overcoming it. This messaging is harmful to disabled and non-disabled people alike. Even if the fear of becoming disabled is valid, this will never be a helpful belief. Believe me, these attitudes will not be helpful if you do so happen to become disabled anyway. Adapting to my disability would undoubtedly have been easier if I hadn’t grown up in a society that struggles to accept disability as a natural and neutral part of life.

 

Over the past two years of being disabled, I haven’t been fighting to overcome my disability; I’ve been fighting to overcome ableism. My beautiful disabled body and I have been fighting to overcome the pressure to “get better”, the undeserved pity, our inaccessible public spaces, the internalised idea that a disabled body is undesirable, the lack of representation. To overcome my disability would be fighting against a part of myself. If I focused on overcoming my disability, I would ultimately be sowing seeds of self resentment, making my physical condition an enemy I am constantly forced to live with. I will overcome barriers I face because of my disability, but I will not, and do not want to, overcome my disability. My disability does define me, as much as being a woman or being Dutch or being sporty defines me, and let me promise you, I could have the best attitude in the world, and I would still be disabled. 

 

Let’s sit with our discomfort, let’s examine why we feel the need to praise someone for not being too disabled, and let’s question the prevalent social attitudes. Maybe, disability isn’t something to fear? Perhaps it is a beautiful form of diversity and creates individuals who are uniquely resilient and compassionate? I am disabled, don’t take that away from me. And don’t try to convince me it’s not a wonderful and important part of who I am (I won’t listen).

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