I’m a Disability Activist Because I Have to Be, But Not Always Because I Want to Be

“Congratulations,” “this is amazing Shona,” “well done!” All of these are well meaning and probably deserved comments that I often receive in response to results from my activism work, but more recently they’ve felt less like positive encouragement and more like a reminder of how shocking and surprising it is when the rights of disabled people are actually recognized. For a long time, I think I wanted to believe that I’d chosen to be an activist, that I wanted to change the world and do some good. And whilst that’s true to a certain point, I’ve come to learn recently that it’s not the full story.

Activism is not a hobby for a disabled person like me; activism is the only way I can access the world and live the life I want. The generations of disabled people who came before me fought hard for the rights and laws we have in place now to protect us, with the hope that my generation would grow up differently and that we might expect an equal chance at a job and career, fair access to public transport and accessible buildings. This simply isn’t the reality, though. In far too many cases, these laws and rights are seemingly only enforced when disabled people request it. A building or shop can get away without providing accessibility until a disabled person points it out.

Disabled people like me are forced into activism if we wish to live the life that so many of us dream of. Becoming an activist wasn’t a decision that I made overnight; it started slowly. At first I was emailing businesses asking them to buy a ramp, and when I was successful in my requests the adrenaline rush that followed was incredible. With just one email I had single-handedly enabled access to a shop for a whole new group of customers. How amazing? But when I look back now, I don’t view these events in the same way. Instead I’m asking, why did I have to do that? How come it’s down to disabled people to flag these problems?

It was an incident in 2019 that really made me come face to face with my personal battle with activism. I’m an avid theatre-goer and when one of my favourite shows announced a singalong performance I knew I had to attend. The wheelchair space for this particular show was at the back of the dress circle, meaning that when people stood up I couldn’t see. Usually this would only be at the end of a performance but people started spontaneously standing from halfway through the show. I missed whole songs and really special moments. Staff simply shrugged their shoulders in response when I pointed out I couldn’t see anything, a sure sign that if I wanted things to change for the next singalong I couldn’t rely on others to make it happen. I did succeed in getting ‘no standing’ set as a ground rule, but my experience had already been tainted and I was exhausted. From the outside people only saw the win. They didn’t see how much the process had drained me. You’d have thought I’d obtained some kind of special luxury, not just equality. And that’s what people forget: when disabled activists win, we’re only winning what everyone else already has access to, nothing more.

If I want a job, a social life, access to education, there is always a degree of activism involved. There have been times in my life that I look back on now and I think if only I’d spoken up, then maybe I would have had a better experience. And whilst that may be true, why should life be that way? My basic rights should not be dictated by whether I have the energy to be an activist in that moment. I often find myself weighing whether the argument and the battle will be worth it for the result. It feels like I’m walking a tightrope; if I push too much then I tire quickly and lose my balance, but if I stay still and do nothing, I fall.

Disabled people shouldn’t have to sacrifice our emotional and physical wellbeing to push for equality, yet we become activists because society has decided that it’s up to us to enforce laws pertaining to us. True equality should not rely on disabled people using precious energy to hold businesses and governments accountable. Instead of simply celebrating when a disabled person’s wins an accessibility battle win, think about why they had to fight at all.  And if you can, consider what you might be able to do to relieve the disability community of some of that burden.

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