Jun 22, 2011

Visible vs. Invisible

"As I was walking up the stair,
I saw a man who wasn't there,
He wasn't there again today,
I wish that man would go away."

So, if you had to have a disability of some description, and the impact on your physical ability would be the same regardless, would you choose to have one that people could see; e.g. anything requiring an obvious aid like a scooter or a labrador, or would you prefer an invisible disability; one where no one need even know that anything was different?

For a long time, I was jealous of people with visible disabilities.  My biggest problem was getting people to take CFS seriously.  Doctors would look at me in blank surprise when I said I needed to stop working, friends would have hurt feelings when I couldn't go out and everyone kept assuming that I'd be better soon.  I spent a huge amount of my non-existent energy explaining that I had a serious, unpredictable, life altering health condition, only to be met with that polite nod that says "I hear what you're saying, but I don't comprehend".

At the time, I knew a few people, including a paralympian, who were far more physically capable than me, but had no issue finding support where they needed it because people would take one look and say "Ah, I get it.  What can I do to help/compensate?".  When people can see your disability they are all sympathy and "Sweetie, how are you?" and "Can I get you anything?".

Of course, for people with visible disabilities there's a flip side to this, which is that everyone is all sympathy and "Sweetie, how are you?" and "Can I get you anything?".  The assumption that you are helpless and dependent often goes hand in hand with open stares and condescension from douchebags assuming that a disability of any kind denotes the mental capacity of a two year old.  The same people  tend to assume you can't hear them when they make charming comments such as: "Kill me if I ever end up like that".

A visible disability can be very dehumanising as strangers, and people without the patience or inclination to know you better, have a tendency to assume you are a summary of your most obvious physical traits; the same mindset, in fact, that makes invisible illness so difficult to explain.

I went to a restaurant once with Elvira, who uses a wheelchair, and Riki, who is legally blind.  The waiter passed menus to me and Riki (who had no chance of reading the fine print), then hesitated as he looked at El.  "I'll have one too" she said kindly, assuring him that yes, people in wheelchairs eat too.

The problem is heavily compounded if the disability in question has any effect on your speech.  Difficulty communicating is assumed to be difficulty thinking by a lot of people and the social consequences of this are dramatic.  I once had to convince a hotel receptionist that a 19 year old with cerebral palsy was legally entitled to book his own hotel room.  I failed.  She actually made me wait on the phone while she called his Mum.

And then, of course, there are people with both visible and invisible disabilities.  My friend Kevin is blind due to a brain injury which also effects his short term memory.  People see Spike the guide dog, think they know the deal and get quite put out when he still can't remember their name after five meetings.  Sometimes I think Kevin has more trouble explaining the invisible aspect of his disability than I do with mine because people are distracted by the problem they can actually see.

Likewise, there are a lot of disabilities that cause extreme fatigue, shortened lifespan, easily broken bones, etc., as well as taking something more apparent such as your ability to walk.  People see a wheelchair and understand that you need ramps, but can be less patient with you when you try to explain that you can't figure out the train timetable because you have brain fog.

So ... up, down and sideways aspects to both.

If anyone is actually reading, I'd love to know what you think.


  1. I agree. I sometimes carry my cane just to prevent questions about why I walk so slow, even when I don't need it. Using it changes me from suffering invisibly to almost becoming invisible. It's hard both ways! :/

  2. I'm visiting from Chronic Babe Bloggers...This is a great post. I have an invisible illness (a rare genetic disease that causes all organs of the body to shut down) and I find myself sometimes wishing it were visible so that people would understand - or at least acknowledge - how much I go through on a daily basis. On the other hand, I do not want to appear helpless - and sadly people do judge a book by its cover. It is this odd co-mingling of emotions that makes a person living with illness - visible or invisible - internally stronger.

  3. it never ceases to amaze me how ignorant and arrogant some (maybe most) people can be. I think blogging is changing things slowly as it is educating those that read blogs, such as myself.

  4. I know what you mean about the cane Michele. It's like it ads legitimacy and people are less likely to assume you are "weird" for doing things a bit differently, but at the same time you get that thing where people glance for a quick second then do the eye avert thing because they don't want to appear to be staring. Either that, or they give that condescending smile and nod as they deliberately shift out of your way.


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