For many years now, people with chronic illness, mental health problems and other apparently ‘invisible’ disabilities have been campaigning to raise awareness. Recently, I’ve seen a shift away from explaining and towards questioning, and I realise it’s long overdue. Most illness isn’t visually self announcing, and the bigger issue is around what people individually, and society as a whole prefer to ignore.
I have read so many stories about people having their disabilities minimised and ignored by others. This happens a lot to younger folk who are dismissed as too young to be disabled. It happens so often around mental health – the minimising, the dismissal and denial.
“You don’t look like you’re in pain’ is the most common form this takes. This is because when you live with pain all the time, you learn how to not have that on your face. It’s a necessary social skill if you’re going to do anything other than scream all the time. I got most of the way to being ready to give birth with medical professionals not taking me seriously because I wasn’t exhibiting enough distress. This is not an unusual thing to have happen.
The problem isn’t invisibility, it’s the ways in which people habitually read each other’s bodies and faces. It’s the refusal to accept that a person can both need a wheelchair and be capable of standing up. It’s hearing a person talk about how crippling their anxiety is and then just assuming they are being flakey when they don’t make it to your party. Undertaking not to notice or recognise a problem is not the same as it being really hard to notice.
It doesn’t help that representations of ill people in film and television are written by able people, for the greater part. This tends towards stories full of drama, heroism and/or tragedy. The grind of living long term with a limiting disability doesn’t feature much. Alongside this we have a government and media inclined to shame and blame ill people as scroungers who want something for nothing. Unless it affects you directly, these are likely your key points of reference for thinking about what other people experience.
I’m not that difficult to see. I carry a cushion when out because my circulation is poor and hard seats do terrible things to me. Getting out of seats is seldom a smooth or graceful thing for me. I can’t always get in and out of clothes without help – this can be entirely publicly visible with coats sometimes. I get tired far too easily and it impacts on my concentration. But I still get people responding with massive surprise when I explain how much should mobility I’ve lost, or that I really can’t handle a late night.
Illness isn’t always about obvious drama. Long term illness is something people tend to learn how to manage, but this doesn’t mean that anyone who appears to be managing doesn’t have a real problem. The issue is not really one of visibility at all, it has far more to do with what is noticed, taken seriously, respected and remembered.