Amy is being filmed. She stands at a pedestrian crossing, her cane in her left hand reaching out onto the tactile paving. In front of her a road, to her right, the pedestrian button box, crouching beside her a camera woman in a green tshirt points the camera up at Amy. Amy wears a pink tshirt, sunglasses, and has tropical pattered trousers.

How does disability define me?

For nearly 27 years I used to say that I wasn’t “defined by my disability”. The reality was that I had internalised pervasive, toxic and negative representations of disability. By refusing to be defined by my disability, I denied myself an identity, a community and the support I needed.

My disability used to be something I hid. For most of my life I struggled in silence, masking the pain, faking that I was ok, too terrified to give the game away that I was a bit different. Even though I was born with my visual impairment, in my mind my disability was something “other”. I rejected it. I didn’t acknowledge that it was part of who I was.

I wouldn’t use the word disabled to describe myself. The word felt irrelevant and inaccurate.

Like many people, I was exposed to negative representations of disability. We are often presented with an image of disability based on the medical model. Frequently the focus is on diagnosis, incapability, limitations and dependence. I simply could not identify with the language that described disability as weak, unable and unproductive.

On the rare occasions when I had to disclose my disability, it was always about proving what I couldn’t do. I remember the fury of trying to access reasonable adjustments for school exams. The paperwork demanded that I listed my failings, when all I wanted was a little extra time to prove how much I could succeed.

The negative associations with my visual impairment only intensified when any requests for support were refused. The ritual humiliation of asking for reasonable adjustments at university only confirmed to me that my disability was shameful. This thing that made me different rendered me inadequate, embarrassing, and usually undeserving of assistance. It became increasingly clear that help would not be forthcoming, and especially for someone like me who wasn’t really a proper disabled person.

Whenever I mentioned my needs or the challenges I faced, I got the same response: “I wouldn’t even know you were disabled, you manage so well”.

Eventually I had internalised this ableism so much, that I thought that if I used the word disabled I would be taking something from a more vulnerable community. I became convinced that I would be cheating more deserving disabled people by asking for a few of my needs to be met.

During my academic life, I became so entrenched in disability denial that I would only recognise my needs when the pain became unbearable. I would mentally punish myself for being unable to manage the toxic overworking perpetuated by my institution and fellow PhD students. Each day as the words in the manuscripts became more and more blurred, I would be furious at my personal failing rather than forgiving myself and recognising the support I so obviously needed.

As my depression and anxiety plunged me into isolation, I spent less time on my thesis and more time online. I started to find a small collection of new voices. These brave few were talking about their disabilities with honesty.

They were open and proud, and unafraid to call out the academic ableism that was really the cause of any limitations on their abilities.

I got help, and as I started to open up about my mental health, there was another part of me that I started to occasionally acknowledge. I greedily read every article, every thread and post. I started learning from experienced activists, googling the social model, reading the passionate pleas for equality, for access, for disability rights. Gradually I started speaking up myself, staying on familiar territory by beginning to call out the very behaviours that had caused my own struggles as a disabled student.

Each like and retweet helped me reclaim a bit of myself. It broke down the shame, and the fear, and the embarrassment of my visual impairment. Each connection showed me the positive beauty of disability.

I increasingly understood that I’d had the privilege of hiding. However, I also realised that I’d been suffering many of the same injustices on my own.

My disability was still invisible in life, but online it became like a new part of me. It was becoming something I could openly discuss and identify with amongst a supportive and encouraging community.

I found people with the same experiences of low vision, who guided me towards the right support, who gave me information and encouraged me to ask for help. The generosity of others made me feel like less of a fraud.

Soon I found the courage to embrace a mobility aid. Becoming a visibly disabled woman meant that I had no choice but to confront the same attitudes that had made me feel the need to hide as a child.

Gradually, I started to become proud of my disability, embracing my unique experience of the world and sharing it with others. Through this process of exposing and discussing my experiences, it increasingly became clear to me that the problem had never been my disability. The issues had always been the behaviours of others. The shame, fear and prejudice had cheated me of learning the skills I needed to become truly confident and independent.

My disability is no longer a source of shame. It is my source of strength.

This is why I am defined by my disability. My disability has always shaped my experience of the world, even when I refused to recognise it. I am angry for the years I wasted, isolated without the support I needed, without access to the skills and simple adjustments that enable me to achieve what I want.

So each time I see someone dismissing disability as a negative thing, saying that someone achieves things “despite” their disability, or that they are not defined by it, I feel that same pain and disappointment. Disabled is not a bad word, it is not shameful, and we don’t need euphemisms to describe it. We need to breakdown the harmful inaccurate negative stereotypes that portray disability as a failure of humanity.

I try to live each day as a challenge to those misconceptions. I want to be a voice in the dark like those who helped me retrace the steps towards embracing my entire self.

My disability is my identity, I am disabled and it absolutely defines who I am now.

Amy stands on a curb. She holds a pink long cane with a white roller ball tip. She looks out towards the road. She looks confident. Amy wears a green coat and a pink scarf to match her cane.

2 thoughts on “How does disability define me?”

  1. I’m Totally with you on this – after becoming disabled I initially ‘denied’ it and told anyone that would listen that my disability would never define me, like it was something bad, a group I refused to be associated with!
    But as time goes on my mindset is definitely changing: why should I be ashamed/embarrassed by it?
    Like you I have started to embrace it, my disability most definitely DOES define me now… and I’m ok with that. 😊👍🏼😘 x

    Like

  2. sometimes we are told that we are who we are and not to let our disabilities define us because if we let us define us we are putting up barriers. I’ve never let my blindness define me because I never think of it as a barrier although there are aspects I think of it as a barrier but have been told not to think of it as a barrier that anything is doable if we put or mind to it.

    Like

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