Disabled Isn’t A Bad Word
The author discusses her journey from considering herself differently-abled to taking pride in being Disabled.
I was born in 1980 in the UK with spina bifida lipomyelomeningocele, which is basically a fancy way of saying that the nerves in my spine didn’t form properly.
This made me technically disabled. I say technically, because although I had stints in a wheelchair and using crutches, I was incontinent, had various toes and bones in my feet amputated, and I have a large lump on my lower back, I still didn’t view myself as Disabled.
Disabled felt like an insult to twenty-year-old me who could hide all her disabled parts. There was no disabled representation anywhere, I didn’t see bodies that looked like mine in magazines or on the telly. So, I just felt wrong. You couldn’t see the lump on my back or my missing toes and misshaped feet unless I showed you, though. So those parts of me, the parts that felt disabled, I could pretend didn’t exist. My dirty little secret.
I lived my life like this for years until I began to lose my mobility and had to start using a walking stick. Suddenly, I was visibly disabled. My secret was out, and I hated it. I tried to put a positive spin on it though. I would write about how I was going to get stronger and I would refer to myself as differently-abled because that seemed much better than the horror show that was DISABLED.
My own ableism told me being disabled was a negative thing. It told me disabled people didn’t have fulfilling lives, they didn’t have wild sex or go out with their mates dancing. I didn’t associate Disabled people with being parents or partners. Disability seemed like something to pity or a worst-case scenario.
It defo wasn’t me. Nope. I was differently-abled. Different from those other imaginary sad disabled people I pictured in my head.
My ableism was strong, and it had been lying to me for years.
“I am fiercely
proud to be
Stumbling upon the Disabled community on Instagram changed everything for me. For the first time ever, I saw what being disabled really meant. I found a community of diverse brilliant humans. People who identified with being Disabled with no shame. People rocking their mobility aids in beautiful pictures. I connected with Disabled activists and artists, teachers and actors. Disabled parents, Disabled creators, Disabled people who were creating meaningful, fulfilling lives from their beds. Disabled people who had lives that were just as varied and complicated and beautiful and magical and hard and happy and saucy and brilliant as nondisabled people’s lives.
All those years I thought being Disabled was a negative thing. I thought all my disabledness was a negative thing. I held so much shame for my disabled body. I thought it was gross and unlovable. I thought I was the problem. When actually no, it’s not me, it’s you ableism. Best break up I’ve ever had.
I am fiercely proud to be Disabled. Fiercely proud to be a part of this huge diverse community of people who are resilient and strong. Who are fighting for equality and are telling their truths for everyone to hear. Ours are my favorite stories.
The world still hasn’t caught up though. I know ableism still distorts most people’s views on disability. I know because when people have asked me in the past what happened to my legs and I’ve told them quite neutrally, “Nothing, I’m Disabled”, they’ve always replied with “Oh, I’m sorry”.
They’re sorry because they automatically presume my disability is a sadness in my life. Something unfortunate. Ableism tells them (like it told me) that Disability must mean sorrow. I get it. I’ve been there. I thought my disability was the problem for all those years when, actually, it wasn’t. It was my views and other people’s views about my disability that was the problem. It’s the lack of access to affordable mobility equipment and specialists. It’s the lack of access to shops and restaurants and my favorite cinema. It’s the pity from strangers or being ignored completely. It was my sexuality being completely erased the moment I sat in my wheelchair. My ability to parent judged, the surprise I’m even a parent at all. It was people looking surprised when Jase, my partner, would kiss me. Oh, and the people who spoke to me like I was a toddler.
Those are the real problems in my life. They cause me more heartache and frustration than not being able to walk ever has.
Disability shouldn’t evoke a negative reaction. It doesn’t need to evoke a negative reaction. It’s a neutral term. It doesn’t automatically mean a lesser life. It doesn’t need automatic pity either. Honestly, stop cocking your head to one side and saying aww, I’m cool. My life contains sorrow and joy. Frustrations and achievements. The laugh-so-hard-your-stomach-hurts moments and the cry-so-hard-your-heart-hurts ones. It contains all the vast emotions that a nondisabled life does.
I like being Disabled. I adore my wheelchair. I love my community. I’m not an inspiration. Or a worst-case scenario. I’m not brave. I’m not living my life despite my disability. I’m Disabled and I promise you that that’s ok.