Last week was Invisible Illness week! A great chance to raise awareness of invisible illnesses and disabilities. But what does it matter? Some illnesses and disabilities are visible and some are less so. So what?
It matters because people with invisible illnesses and disabilities are abused and discriminated against on a daily basis because of how we look (and the flip side is that people with visible disabilities also experience abuse and discrimination).
“The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person. Unfortunately, people often judge others by what they see and often conclude a person can or cannot do something by the way they look. This can be equally frustrating for those who may appear unable, but are perfectly capable, as well as those who appear able, but are not”. (The Invisible Disabilities Association)
This is mainly an issue (for me anyway) when parking with my blue badge. Apparently, holding a blue badge means, to many, that I should meet their preconception of what disability looks like. To look like me just isn’t good enough. From the moment I drive into the space, I’m expected to conform to someone else’s idea of what I should be. Since I don’t meet many people’s expectations of how people with disabilities look, I am subject to dirty looks, muttering and direct comment such as “you look fine; you don’t look disabled; I don’t know why you’re parking here; you can walk then” etc. One woman actually made a nasty comment to my (then) 4 year old daughter about me. I have to take a deep breath and brace myself before I get out of the car, just in case one of these narrow-minded individuals is about.
I’m lucky though – I haven’t experienced serious abuse and I haven’t been physically assaulted. But it’s enough to make me feel very vulnerable when I go out alone. During a hospital visit a few years ago, I met a lady with Multiple Sclerosis who had been followed into a supermarket by someone shouting obscenities and calling her a scrounger. She was understandably terrified and sought the intervention of supermarket staff (who were brilliant and chucked the nasty person out of the store).
Of course, parking isn’t the only time this prejudice raises its ugly head; I’ve experienced the same problem when using my wheelchair – particularly when going from being in my wheelchair to being out of it. Some people seem to think that it’s all or nothing with a wheelchair: if you only need to use it some of the time then you don’t really need to use it at all.
Unfortunately, members of the medical profession, social care. local government and DWP workers sometimes hold this misconception too, which means we often have to fight very hard to access the help we need. The medical history of people with invisible illnesses and disabilities is often characterised by repeated visits to professionals where our symptoms are written off as all in the mind. Ehlers-Danlos Syndrome and PoTs don’t show up on scans or blood tests. I spent many years repeatedly labelled as a hypochondriac by my GP and my teachers – since my symptoms weren’t visible they decided I was either making it all up or mentally ill. Not surprisingly, I actually became mentally ill with depression as a direct result of being disbelieved. Worse than that I began to distrust myself. I’ve since learned that this is absolutely typical of the path to diagnosis of an illness or disability which is invisible.
Pain, dizziness, weakness, fragility of tissues and a whole host of other symptoms and difficulties are often totally invisible to the naked eye. It doesn’t mean they’re not there. And of course, non-physical disabilities e.g. cognitive and communication disabilities can be even harder to spot.
The concept of not judging a book by its cover is such a cliché and yet we do it every day.
What do people with disabilities look like? People.