Unlike my neurodivergence and mental illnesses, I’ve always been reluctant to classify my physical health conditions as disabilities. That has changed a little in recent years as these conditions require me to take drugs that suppress my immune system, but then I would say that being immunocompromised is my disability. I want to talk in this post about being on that edge of disabled and not, and the experiences of conditions that can be fine most of the time until they’re not.
This post is about arthritis. I was diagnosed with psoriatic arthritis about 9 years ago. This form of arthritis is fairly common; about a third of people with psoriasis will develop it, and psoriasis itself affects 1 in 50 people. Both conditions are caused by the immune system attacking healthy tissue for no reason hence the immunosuppressants. I do have some very mild osteoarthritis in one joint caused by poor walking while waiting for treatment.
As much as being on immunosuppressants has being a massive problem during the pandemic, they do work very well at managing my symptoms. My psoriasis is 95% clear and the arthritis is noticeably better, however neither condition is what you would call cured.
Technically you could say I have a motor impairment. The arthritis affects (at time of writing) my left ankle, right knee and the 4th toe on my right foot is a “sausage digit”, a common symptom on psoriatic arthritis where fingers or toes swell and look like sausages. I do also have quite bad Achilles tendonitis in both ankles which comes and goes. How does this effect me? Well I can walk, and walk “normally”, as in I can do all the things I need to do like walk to work, shops etc. I don’t require a mobility aid (most of the time, we’ll get to that) nor specialist footwear. I don’t have or need a blue badge or access to disabled parking spaces. As long as I don’t stress my joints, I barely notice the problems. So hence, not feeling right describing myself as disabled from this aspect.
The “as long as I don’t stress my joints” is doing a lot of work here. Here I’m referring to things like walking for too long, walking on difficult uneven ground or going down long flights of stairs. Running or even jogging is near impossible. I’ve been told by my doctors to avoid impact sports, which is easy enough, but stairs have the same impact (pun intended). I can walk down stairs fine, but I have to do it in a crab like fashion as to avoid bending my right knee. I’m used to this, but it is rather slow and annoying. I can’t count the number of times I’ve been tutted at, stared at or even pushed when navigating stairs in train stations. Doing too much walking can be fine as long as I avoid walking for a day or so afterwards.
Shops that have escalators up but not down are a big annoyance as up is fine, it’s down I need help with! I wish more people thought of escalators as an assistive technology. I went to a museum once where the escalators were broken but the lift was for “wheelchairs and buggies only”. There is a spectrum between “in a wheelchair” and “can walk no problem”. Lots of people that use wheelchairs can walk some distance or stand for periods.
So what about mobility aids? Well I do have a folding walking stick which I use sometimes, and try to take with me when I know I’m going to be on my feet a lot. It does help to some degree, mostly to move the pain from one joint to another to help me balance it out. Sometimes I use it not because I need it, but to try and show that I’m going to be slow walking due to pain, or that I do need a priority seat on the tram. It rarely helps me walk faster or for longer and sometimes can make things worse. If I take it out, I’m very wary about putting it away mid-walk if I don’t need it in case people think I’m faking it. This can mean I overuse it and that can be the cause of pain.
The last few paragraphs really do make it sound like a disability don’t they? But I don’t know where the line is. By the Equality Act you could argue that as I can manage/avoid triggers, it doesn’t interfere with my daily activities and doesn’t count. After all, not being able to play badminton is hardly a “substantial negative effect”. There are social model aspects, such as lack of escalators or bad building design that you could say disable me, and therefore I have a disability, however I can get around those? It just feels dishonest to say I have a motor disability when it’s only a problem 5% of the time.
I’m sure folks out there might have better language to describe this. The point I wanted to make is that the disabled/not-disabled binary is not as clear cut as we imagine it to be (like all social binaries), and that even things like having trouble walking can be “invisible”.