‘I DON’T WANT MEDICINE TO MAKE ME TALLER’
Cathy Reay is a 35-year-old writer with a focus on disability justice. Sometimes, when people have a disability, that’s all anyone can see. But growing up ‘different’ I was always encouraged to embrace my disabled body and be proud of my whole identity. I have achondroplasia – the type of dwarfism people have probably seen on TV, at the Paralympics, or maybe, less favourably, in pantomime.
I’m quite lucky. So far, I’ve escaped most of the complications that can arise from having my disability, such as severely bowed legs and lower back pain. Some people with achondroplasia get these while some don’t; it’s a bit of a lottery.
New treatments
At various points in my life, I have been made aware of the latest treatments and surgeries to try to make people like me look a little bit more like people like you. So far, there are growth hormones, which don’t really work, and limb lengthening, which is pretty painful. Now we have vosoritide.
Vosoritide is a new drug that, if taken daily from early infancy until we stop growing, claims to stimulate bone growth, so that people with achondroplasia grow taller than we would naturally. It’s currently available in the US and undergoing clinical testing in the UK.
When I first learnt about vosoritide last year, I was sceptical. ‘Why do we need this?’ I thought.
It feels like pharmaceutical companies are still trying to
‘fix’ us. After watching the
BBC1 documentary, Ellie Simmonds: A World Without Dwarfism?, I felt even more critical of the drug. I’d be lying if I said it wouldn’t be handy to be able to reach a higher supermarket shelf, but the thought of having to take daily injections all through childhood just to do that seems like far too much effort.
My kids have dwarfism too and as their parent, I strongly believe it’s my responsibility to ensure they have as much autonomy over their own bodies as is possible. I’ve told them about the drug and, as soon as they heard the word ‘injection’, they said, ‘No way.’ Naturally, we all sometimes vent about the frustrations that come along with being smaller than our peers, but to me so many of those issues stem from our inaccessible environments and the way we’re treated by others, not our bodies themselves.
Everyday frustrations
Not being able to reach something in the supermarket, being too short to go on rides, not being able to stand up in the pool, clothing being too small, shoes too narrow. These frustrations are because the world wasn’t built for us, not because we weren’t built for it.
People teasing us, calling us names, shoving us, and if we’re unlucky even more severe forms of abuse – these frustrations are because people are afraid of disability, or have been taught to hate it. A drug that makes us a bit taller wouldn’t help here either. We shouldn’t have to alter the way we look just to keep bullies at bay. That doesn’t feel very progressive to me.
I recognise that I have been lucky because, although I found my childhood really tough and isolating, I have always been loved for who I am, not in spite of it. I do sometimes
have frustrated moments where I wish things could be easier, and I worry about back pain in my later years.
I can understand that the potential to reduce painful side effects would be a reason why people may choose to use vosoritide, although it’s too early to tell if this will be the case. But when it comes to others having an issue with me, I see the problem as fully theirs. When it comes to accessibility barriers, I fight to get equal access, and if I can’t, I find a way around it.
I don’t want medicine to make me taller, I want the world to be more adaptable. I want communities to be more embracing of disability, and less afraid of it. I want people, disabled and non-disabled, joining me in the fight for those things. I understand that some may decide to go ahead with it, I get it, there’s no bad feelings, it’s a personal choice. But a few of us taking a drug won’t change things for those of us that can’t or don’t want to, and I want to see our entire community being treated better, exactly as we are.