I have a complicated relationship with my impairment. I don’t think it’s an exaggeration to say that coming to a coherent view on it has been the primary project of my life so far. I’ve thought a lot about what it means to be disabled, how I feel about it and, crucially to me, how I should feel about it. I’m not an expert, but I feel like I have things to say that are worth saying. This post is an exploration of my evolving attitude to disability, a summary of where I am now and an explanation of why a certain strand of ‘disability-positive’ rhetoric makes me uncomfortable.
Rage, rage against…pretty much everything
If I ask my parents how I talked about my disability as a small child, one word usually comes up first: cross. One story that sticks with me involves them trying to explain why I was born prematurely, an unenviable task if ever there was one. They would say that they “just couldn’t wait for me”. This explanation, so the story goes, made me quite angry. I understood even then that my being born early had caused my impairment and I clearly resented my parents for their lack of patience!
I don’t remember being given that explanation, but I do recognise that anger. Much of my childhood was, I now realise, consumed by a directionless fury. My teenage rejection of religion was driven in part by the laughable notion that a supposedly loving god would make me the way I am. In the absence of a supernatural being to blame, I directed my anger at the world at large. I was a truly horrible teenager. As my disability progressed in those years, I became angrier and more viscous to those around me. I make no excuses, but I think it’s important to see the reasons. For a while, I thought it was sadness, and there was surely some, but the majority of my temperament was driven by a powerful, simmering rage.
Anger remained my primary disability-related emotion throughout high school. It burned hot and drove me to fight tooth and nail to resist my impairment. I would not use a wheelchair in the house. I would not have surgery and what treatment I did have was received with disdain. But anger is a dirty fuel, and eventually its supplies dwindle. I began to see the harm I was causing and I grew tired of the fight. Eventually, I could not hold myself aloft against the force of medical gravity. I started using a wheelchair in the house, my bedroom moved downstairs. I didn’t end up having any surgery, but my old zealous opposition was gone. It was a practical choice, nothing more.
I don’t think that I can fully express the transformative impact that accepting my impairment has had. I don’t push myself to breaking point just to prove a point to myself or anyone else. Only now that I have ‘given in’, as my past self would probably put it, do I feel truly in control.
Empowerment by denial
I don’t wish this post to come off as combative, although I may stray into sharp words occasionally. I don’t want to start trouble, but the fact that accepting my impairment has been so important to me means that I cannot help but feel uneasy about hashtags like #AbleNotDisabled and the avalanche of terms like ‘differently abled’ that I see every day. A philosophy is more than a phrase, and I often agree in part with people who use this sort of language. We are similarly opposed to the ‘pity narrative’ that has surrounded disability since time immemorial. None of us want to see disabled people held back. Increasingly though, I cannot shake my feeling that the language is harmful to the cause.
Phrases like ‘differently abled’ are examples of what I’ve come to call empowerment by denial. Language like this seeks to elevate people beyond disability by simply denying its existence. Instead of challenging society to treat disabled people properly, it seeks to convince society that we’re not really disabled after all. At best, it’s erasure. At worst, it ties better treatment to the ability to ‘perform abledness’.
Not sufficient, but necessary
Perhaps this all seems like a stretch. In the past few years, I’ve struggled with that same thought. My own experience has solidified my opinion though. I don’t understand the apparent taboo around accepting limitation. I spent years trying to be like everyone else, trying to be anything but disabled, and I am fucking exhausted. Quite frankly, I don’t want to do that any more. I shouldn’t have to do that any more. Anything that perpetuates the opposite idea is not going to fly with me.
So yes, I am defined by my disability. I am able and disabled. There are things that I can’t do, but I’m damn sure that I can live a good life regardless. I’m grateful for the life that I’ve had so far, disability and all. Without it, I wouldn’t be me, but it’s not all that I am.
If people feel the need to erase my impairment to fully accept me, that’s their problem. I don’t need to resort to denial to feel worthy any more.