Making The Invisible Visible

You slip the handicapped parking placard onto your dashboard and get out of the car, stretching as you stand up from the cramped car seat. The man walking by notices you parking there and calls out, “Hey you, you don’t look handicapped!”

He was only doing what he thought was right, making sure healthy people didn’t park in the disabled spots. But what of those disabled by heart problems, fibromyalgia, multiple sclerosis, or a host of other invisible conditions?

Society’s awareness of visible disability has taken leaps and bounds following the anti-discrimination legislation enacted several years ago, and also with the recent paralympic games. There is no excuse now for thinking that people in wheelchairs are stupid or contagious, or that they don’t deserve to have a good job.

Unfortunately, the average person’s views about invisible disabilities and chronic illnesses are not yet so enlightened. Sufferers are met with skepticism, rudeness, hostility and with being told they’re outright lying.

Why is society’s attitude and accommodations lagging behind for those whose problems are less visible?

For a start, simply because these problems are less visible. We make first impressions by how we look, to get people to see beyond appearances is tricky. Society tends to want to ignore illness anyway. It’s easier to convince yourself that the sufferer is exaggerating, or even straight out lying, if you can’t see their pain and disability. It’s much harder to convince oneself that the man in the wheelchair is “just kicking up a fuss” about not being able to get up the stairs.

Many invisible conditions are variable: the sufferer may be able to perform a task easily one day, and only with great difficulty the next day. This makes the concept of “reasonable accommodation” of the disability much trickier – it’s obvious that the man in the wheelchair needs a ramp to get up those two steps into the front office, but how do we deal with the fibromyalgia sufferer who can’t know in advance if she’ll be well enough to come into the office on Tuesday?

Invisible conditions also tend to be the ones with the most symptoms. These conditions can affect not just one thing but every bodily system: multiple sclerosis attacks the nerve sheaths all over the body, arthritis can attack every joint, Ehlers-Danlos syndrome every bit of connective tissue. Our hypothetical fibromyalgia sufferer could probably fill a page simply listing symptoms she has every day. Research has shown that doctors stop listening properly after patients mention three symptoms in a row, how can we expect the general population to understand people with fifty symptoms?

Another hallmark of invisible disabilities is non-measurable symptoms. Our paraplegic can have a nerve conduction test if anybody doubts him, which is unlikely. But the lady with fibromyalgia has pain, decreased stamina, headaches, fatigue, nausea … symptoms which can easily be trivialised and cannot easily be measured. This makes doubting her much easier for skeptics.

Some people with otherwise invisible disabilities carry walking sticks, braces, or other visible medical equipment as much to gain consideration as for physical support. Those with invisible conditions may find it impossible, for example, to stand in a long queue at the bank or to keep their balance without sitting down on the train. The walking stick lets others know they may have difficulties, so they can be given the consideration they need. I’m hoping, one day, that I won’t need that walking stick to get a seat on a bus.

And in the meantime, you’re still leaning against the door of your car, trying not to cry, because you don’t want to yell at the guy for doing what he thinks is right. But you didn’t need that bit of pain today – there is enough of that already.