MS is such a sly illness. Only people who live with it know how unforgiving it can often be.
Attitudes to people with MS haven't moved forward
For everyone else who doesn’t have to walk in our shoes, it’s guesswork. And ignorance of course. Especially ignorance.
Although this is the 21st century, attitudes towards people with MS don’t seem to have moved with the times. Unless there is a stick or a wheelchair, the burden of having to prove yourself to merit a blue badge to park on a single yellow line - or in a disabled parking space - never goes out of fashion. It never gets old, and that bothers me a great deal.
After all, as a writer blessed with a fertile imagination, it feels like living through the Salem witch trials of the 1600s. In these judgemental times, it’s not easy trying to prove you’re not faking any of those ‘invisible’ symptoms - as pointless as it was 500 years ago having to prove you weren’t a witch.
There are no shades of grey
For those who think nothing of the consequences of trying to belittle us, MS is simply black and white. There are no shades of grey. It’s either a stick or a chair. In effect, we always seem to be on the wrong end of an index finger, whether it’s justifying ourselves for Personal Independent Payments (PIP) or disabled parking bays.
But how on earth am I expected to park my sometimes slurry speech and, at times, one good eye, in a disabled space? Beyond that there’s a less than cooperative bladder that has, on occasion, rendered a blue badge unnecessary after I’ve inadvertently acquired an unwanted wet patch on my jeans. Is it then that people see a disabled person or just the town drunk? And it’s not even lunchtime!
Being made to account for myself by complete strangers is nothing new, and over the years I’ve had my fair share of disabled parking space vigilantes. There is something so righteous about how they stand and stare as if deciding if the man getting in or out of the vehicle looks ‘normal’.
People need to be better informed
Last year one person claimed to have once been a policewoman and demanded that I explain myself to her. It wasn’t until my wife faced her down that she retreated faster than Miss Marple on a bike, peddling like the clappers. I think it was more embarrassing for her than me. Or maybe not.
Of course, I’m making light of what was a very distressing situation as a result of somebody else’s prejudice. But that’s ignorance for you. If people were better informed – or just informed – then I wouldn’t be compelled to give too much information about myself.
But I can live with it. Because as bad as my relationship with MS is - and it’s really not a happy one - it’s better than tolerating those who jump to conclusions when they don’t know anything about me or my condition.
Martin is a writer and literary consultant. You can find out more about his work at martinbaum.co.uk.