Being judged by appearance

For many, it’s an all-too-familiar accusation: “You’re not as disabled as you let on”. Anoushka Alexander reflects on other people’s judgements and assumptions

I was shaking by the time I hung up. The last person I expected to accuse me of “not being ill” was my pharmacist. I had rung to ask about his prescription delivery service, only to be told that he would no longer deliver to me because “you are young and can collect them yourself.” His service was not for “people like you”. To him serious disability had a certain “look” and I don’t have it.

I don’t know who the “people like you” are. Lazy people? Scroungers? Or people who have been almost entirely bedridden for seven years, like me?

I shouldn’t have been surprised. Since my mid-twenties I have had a rare, incurable neurological condition which leaves me in constant and usually excruciating pain, but you can’t see it. And people don’t see me on a normal day – if they see me it will be on a rare day when I am actually up, however briefly, even if this only means sitting downstairs for a bit.

Even friends find it hard to understand. I remember a close friend getting annoyed when I rang yet again to cancel seeing her. I hadn’t been ill for long then and she thought I was just being flaky. I remember how guilty and judged I felt – although I wasn’t actually doing anything wrong.

It is hard for people to grasp the fact that someone really can be young and debilitated by constant pain. It isn’t fair – it is just random. It is almost too scary for people to accept that sometimes bad stuff happens arbitrarily, because if they accept it happened to me, they will have to accept that it could happen to them.

The problem is more serious when it comes to benefit assessments, because if I am well enough to get the assessment it is by definition a good day and I will not look that ill. This is no doubt why I failed my first assessment and had to go to tribunal to get my benefits reinstated. What the assessors don’t see is that all the times when I can’t turn up I am scrunched up in agony in bed. Or that when I get home from the assessment I will be straight back to bed and a handful of heavy-duty painkillers. I am grateful I now have a concrete diagnosis, and a matching set of hard core medication to “prove” I am ill. But even that was not enough for my pharmacist.

I am sure it is the constant rhetoric about benefit scroungers which feeds this prejudice. I have yet to meet anyone who is pretending to be ill or disabled to get a meagre income from the state. As I told my pharmacist: life is difficult enough when you are disabled, without having people make assumptions about you.