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Pieta in her wheelchair patting a dog on the beach

“Becoming disabled was very much entering the unknown” | How I discovered disability pride

 

I spent 18 years without a disability. Being ‘able-bodied’ was never something I identified as – nobody ever really identifies as part of the ‘majority’ group. When a fall left me paraplegic, my whole world changed shape. Suddenly, I had this new identity, and the ‘otherness’ felt acute. 

 

I’m still very aware of my wheelchair; it’s the first thing people see of me and often the first thing people will ask me about. I only now understand the weight that many grow up with, always wondering if people act the way they are because of who they are or some misguided judgment. An interesting distinction between acquiring your disability or having lived with it since you were born is that for the latter, disability is something you have always known. I grew up non-disabled, in a non-disabled family, and didn’t know anyone in a wheelchair. 

 

I remember lying in the hospital bed, running through every interaction I’d had with someone in a wheelchair to try to shape some picture of what I could expect for myself. I came up with a total of three interactions, which helped me form a minimal concept of what I could hope for my life from here. Becoming disabled was very much entering the unknown.

 

What the world says about disability 

 

Becoming disabled, I swiftly experienced the popular narratives which the non-disabled world places onto us. The first, pity, which is somewhat justified after an accident, but long after my accident’s acute impact subsided, pity remained. “I couldn’t live like that”, “I’m so sorry, it must suck”. 

 

Then there is inspiration; “It’s so inspirational that you’re still the Pieta we’ve always known”, “you inspire me to be grateful my life isn’t like that,” or “look what Pieta has overcome.”

 

In my experience so far – after the pity and inspiration narratives dry up, so do stories about disability. After acquiring my disability, I thought I needed to be “inspiring” or accept “pity” to be valid. I’ve had to learn that I can exist as a disabled woman, without needing pity and without being an inspiration. I have felt a quite urgent need to overcome or minimise my disability to mitigate some of the discomforts those around me feel about my disability. From the well-meaning people who don’t know what to say to me, family who say they feel sorry for me, new friends who don’t know how to ask about my wheelchair. I thought if I could do everything I used to do, if I never expressed any grief or negative emotions surrounding my disability, it would go away, and people wouldn’t worry so much about it. The outside world also reinforced this. 

 

Right from staying in the hospital, I received messages that disability was something I should avoid identifying with; a paraplegic peer supporter told me they were dismayed at having to get a moon boot because they would look “even more disabled.” A well-meaning aunt who insisted I wasn’t disabled because I could do things she couldn’t do, like wheelies, and countless friends and family who came in with stories of hope, of possible cures, of ways to avoid being disabled at all cost. With culture telling me that disability was to be avoided at every turn, it is no surprise that this is what I set out to do –  at first. 

 

Finding pride

 

Over the past year and a half, I’ve had to adapt to an entirely new way of doing things and a different way of viewing the world. My disability has shaped my view on social justice and change, discrimination, healthcare, accessibility. It has made me more grateful for life and wellness. However, the most significant journey has been arriving at a place where I am proud of my disability, proud to live in my disabled body. I no longer want to avoid my disability or minimise it for someone else’s comfort. 

 

I remember months after my accident coming across posts for disability pride month and thinking, “what is there to be proud of? My body doesn’t work, and it feels awful”. I am still unlearning this internal voice. There’s a lot of shame associated with disability, shame that’s often a lot easier to find than pride, and I’ve had to make an effort to shift that perspective in my mind and move toward pride. 

 

It was by spending time with disabled people that I could arrive at this place of being proud of my disability. Only by spending time with other disabled people did I see reflected the strength, resilience, humour, and grace that is so definitive of the disabled community and also exists in me. This reaches far beyond the media’s stereotypes or the archetypes we so often fall back on. Only when I saw how disabled people adapted, even thrived, within a world that is not built for them did I realise that this was a community I wanted to be part of. If this is what disabled people are like, I am proud to be disabled, but the journey to be proud of my disabled body is a separate issue.

 

 

Pieta at a festival with her friend in a field she wears a red top and white shorts

Pieta at a festival

 

Loving my disabled body

 

There’s a quiet culture of hiding disabled bodies, a hangover from historically doing this quite overtly and intentionally. I see this in people who feel the need to congratulate me for “getting out there” at a concert or club. The people who rush to help me without asking, and in the surprised looks from strangers. That quiet culture impacts us all, and we must break through it by embracing ourselves and then helping liberate others.

 

Like many young people growing up in the age of social media, it took me a while to learn to love my body rather than stand in front of a mirror and pick out all my flaws. When I finally felt I fully loved and accepted my body, my body changed drastically – I was suddenly a wheelchair user. I couldn’t even stand in front of a mirror to start with, but once I discovered disability pride, a shift began to occur. I realised my body is not a static object.

 

I began to focus on the fact that I exist to experience life and deserve to do so. I am here not to be something two-dimensional but instead I am here to move through and to shape the world just slightly through what I set out to do. Many of my worries about my disabled body came from what ‘others’ thought of it, but I have come to understand that what ‘others’ think isn’t important compared to the way I viewed myself. My body exists not to appeal to others but to allow me to experience the world. 

 

If I have a good experience of life, I have a good body. 

 

Maybe my experiences look different, maybe my function looks different, but that difference does not make my body less valuable. My accident has taught me a form of gratitude that is so tangible I can almost taste it. Never before would I have been grateful for lasting a while without peeing myself, but now a little bit of bladder control feels like a victory. Every muscle that I can still control feels like a gift. My act of defiance is loving a body in which everyone told me I should do my utmost to avoid existing. My disabled body is beautiful and valid. 

 

There is so much work to do changing attitudes, improving representation, and breaking stereotypes. Still, we disabled people have so much to contribute if they’re not further disabled by exclusive attitudes and a lack of access. Through disability pride, we work to make this change, and I am so thankful for it. 

Comments

  • Evelyn
    March 5, 2021

    as a, now, 21 yr old paraplegic this resonates in MY SOUL. Thank you for sharing your experience in words my mind couldn’t put together because this is how I feel as well. Best wishes!

    Evelyn ♥️

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