Disabled activist, Stella Young recently wrote: ‘The social model tells us that we are far more disabled by inaccessible environments and hostile attitudes than we are by our physicality. My disability comes not from the fact that I’m unable to walk but from the presence of stairs.’
How true is this of people who are chronically ill? Accessibility is rarely the issue – we often have little energy to go out at all.
Hostile attitudes: yes, to an extent particularly if the people in our lives are not supportive – but how many people do we actually see?
Severely chronically ill people are not out there like many disabled people. Depending on the disability, many disabled people share much, much more with the well than we do.
Young, for example, writes about how she was included at work but socially it was a different story because pubs, restaurants, bars were often inaccessible.
How many severely ill people still work or socialise?
Young continues, ‘We are not wrong for the world we live in, the world we live in is not yet right for us and we need to change it.’
She has a point. Apart from the daily struggle with physical suffering, what I battle with most is the isolation and that is caused by other peoples’ attitudes to illness.
If only we could change ‘the world’, in other words, change people.
Why can’t we be accepted as we are?
It is interesting to note that though many visibly disabled people feel that they are not accepted because of their outward appearance and ‘difference’, actually the same is true of the invisibly ill.
Even if you can pass off as a ‘well’ person for an hour or two, people can usually sniff it out that there’s something wrong with you. Even if you make up a biography for yourself so no one knows you don’t work or rarely go out, there’s just something about you …
Dogs sniff each others’ behinds and so do humans.
The pack rejects the weak.
Can we change nature?
I am sure there is a reason why Black people and gay people have progressed so well in their fight to be accepted by society. There is nothing ‘wrong’ with being Black or gay. Different yes, but essentially, not dangerous.
But serious illness frightens and disgusts people. At some level, we are perceived as dangerous.
Perhaps it is a survival mechanism to avoid and reject us.
I still believe that there are kind people in the world but unless you’ve walked in our shoes it is extremely hard to understand what it’s like to be severely ill your whole life.
And if you don’t understand you’re unlikely to sympathise.
By Joyce Fox – guest edited by Fran Halsall
Joyce Fox has been ill with ME for 29 years. She is the author of Surviving ME (Vermilion, out of print but available on amazon). She runs Facebook groups for creatives and professionals with ME.