I don’t need to like my disability to be entitled to accessibility or respect.
Content note: discussions of depression and suicidal ideation are contained within the article.
To be a superhero in society, one has to be disabled and then we exist only as inspiration porn. We hear how you just couldn’t cope if it was you, you’re completely amazed at how brave and courageous we are and how we really make you appreciate your life and health as it is. Disability can be a defining experience. It may require certain navigation or care throughout life. It may be a unique experience. But people who are disabled so rarely get to define their own lives, but even worse than that is when people stop talking about disability completely because they simply don’t want to acknowledge it at all.
Chronic pain is something that hounds my life. Each day is as unpredictable as the last. I can go for months with very little pain, or I can have weeks where every other day I’m hit hard by it. I have also never accepted it. I quit the things I loved because I had to, but I simply pretended I never needed them anymore. I quit a lot of sports because they would often result in pain. I gave up drinking, finally beginning to come to terms with my alcoholism, but it wasn’t exactly empowering and the destructive tendencies certainly never left. I even gave up food that actually tasted of anything other than cardboard. I did it all, without complaining and often by using jokes at myself. I never really accepted it. I never really thought this was who I was now because I was just trying to get through the day, until finally, bitterness swallowed me whole.
Because of the need to manage my life carefully, getting a pile of work on my doorstep simply because other people were late with their dates meant that after weeks of planning to go away just for a couple of days, I couldn’t. I had to do the work later, I had less time to manage myself and I yet again had to give up something I wanted. Resentment reared its ugly head. Why? I have to watch fairly insipid people go away every other weekend and I ask for a bit of time away and yet it’s ruined by other people. How is that fair? Why can my life not be easier? Why are their lives so much easier? Why must I always be the one to sacrifice something?
Of course, I’m really not the only one. There are plenty of worse things going on in the world, I reasoned. Plans fall through all of the time. But here I was because of one weekend crying my eyes out and wondering just what was the point. Finally, for the first time, I had to admit defeat. I couldn’t pretend myself out of this one. I was in pain, and I was miserable. I hated my disability and my body. It’s something I live with – some days I get close to accepting it, most days I try to ignore it but on bad days I hate to acknowledge that this is my life.
Yet, acceptance really doesn’t matter. So often, people who live with disabilities or chronic illnesses are asked how they cope or how they manage but a lot of people would manage a hell of a lot better if our attitudes completely changed. We don’t need to accept our disabilities. Too often disabled people are pitted against each other – well, this person wants cannabis legalised and this one does, and she wants the right to die but he doesn’t, and she voted Tory but he marched against them. We’re made to compete for who has the most valid voice, and often it comes down to who able-bodied people believe is worse off. Yet, often it’s not about the diagnosis, but about the realities of life, most of which can so often be made easier by accessibility.
“Acceptance really doesn’t matter”
If we had flexible working hours, accessible work venues, more wide-ranging welfare, easier ways to apply for jobs and better support from friends, family, and medical professionals then we might just have a chance at accepting our lives, because they wouldn’t be as difficult as they can feel now. Anxiety and depression are common for people with physical disabilities because it can be an incredibly isolating experience. This is why we need to build a society around the very concept of empowerment rather than having each person scrap for themselves.
People are seen as a means of production. If we can work at all then we’re given no support and just expected to get on with it, and if we can’t work then we’re seen as useless. This causes disabled people to sacrifice their own health so they can run full steam at a life that is trying to trip them up. People may act impressed at the sheer volume of work I get through but I have no choice. I’m no superhero, I’m simply trying to survive – as are millions of disabled people. We don’t have time to sit and reflect upon life, consider how we feel about our identities or even work out what we need to improve our mental health, because we’re just trying to stay well or at least okay enough not to be in agony, or have weeks spent in bed.
To be disability-friendly, to defeat ableism then able-bodied people have to make accessibility their priority. It comes down to them. Whether it’s their venues being accessible, ensuring a fair distribution of work or creating a supportive environment. There’s only so much educating we can do. Able-bodied people have the power, and if there is an accessibility issue, it’s not down to disabled people. We’ve been asking for better for years. It’s down to able-bodied people and what they’re willing to commit. It’s time for them to show their hands.
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