In May 2017, I started using a walking stick – on the day of my GCSE biology exam to be exact, and I was so nervous about what people would say. It’s not exactly seen as normal for a 16 year old to be using a cane, is it? But I had very little choice; I couldn’t hold myself up and the amount of pain I was in wasn’t worth it compared to the slight embarrassment I felt when I first started using it.
Using a walking stick as a teenager is really difficult, and I can’t sugarcoat that. Elderly people glare at you because they think you’re faking; people make comments as you walk past. A lad imitated my legs collapsing as he walked past me once, and I’ve never felt so self-conscious. My condition that was once invisible became public property to discuss and question and laugh at. A boy from a younger year once shouted after me asking if I’d just come back from a war, which was not only humiliating, but extremely offensive to veterans.
It got easier with time. I became more comfortable with going out; it took longer for me to feel okay when I was just with my friends instead of my mum, purely from a protection perspective (although my friends are amazing, and so supportive). I got to a point where I just rolled my eyes when someone made comments, and I empowered myself through having photos taken with it.
I stopped using it in January 2019, when I had my pain rehabilitation programme and strengthened my legs. And obviously, I was, and generally am, really happy about that – people don’t look at me, they don’t comment. But that causes other issues for me, and I sometimes miss it – not in that I want to use it, but the fact it has made my disability invisible again.
If people knock me, it hurts for at least four days, and this happens a lot because I can’t walk very fast. I don’t feel like I can ask for a seat on trains like I used to, so I’ve stood up most times than not since January on shorter journeys and the tube in London. It feels like I’m constantly dismissed and seen as able-bodied, but I’m still working on building up my strength so my legs still collapse under me and I can’t walk very far in one go.
This isn’t meant to be a sob story. This is more about the differences between being invisibly disabled and having a visible invisible disability (which is different to a visible disability, which is more about visible symptoms, I believe). I know I am privileged to be able to walk around without people making such comments, I’m more likely to be given a job, and I am less likely to find that places are inaccessible to me. There is definite privilege in the stage I am now at with my disability, and it’s quite undeniable.
But I can’t deny that I sometimes miss the ease that it could sometimes bring in people accepting that there is actually something wrong with me, even if that was often grudging. Now, I feel like I have to prove myself far more, and it’s difficult in a different way.
Whether your disabilities are visible or not, there will always be a fight. Disabled people still aren’t equal in so many areas, and often aren’t even included in lists of marginalised people. So it’s interesting for me to look at the different versions of the fight that I’ve experienced, and will continue to experience.