Jun 28, 2011

MCS should not be underestimated

"A woman in her 30s, living in the Pacific Northwest, was severely disabled by MCS [Multiple Chemical Sensitivity]. Everyone in her community knew it, but as is usually the case with MCS, most didn’t believe she was really sick; they thought she was “crazy.” So, one of her neighbors sprayed the vacant lot he owned, next to her house, to prove she wasn’t sick — over the pleas of her husband and her best friend, another neighbor. She died of organ failure the next day."
I found the above quote on this blog.  That neighbour should be locked away for life.

As someone with MCS I'm all too familiar with the attitude you get when asking people not to wear or use chemical products.  It's as though you're impeding on their basic human rights by suggesting they not wear perfume or burn scented oil in your shared foyer.  It's the sort of illness where people are sympathetic in theory, but if it actually effects them in any way they are more inclined to believe you've made it up just to inconvenience them.

I know what it feels like when your heart starts racing out of control because you used the wrong laundry detergent, or someone down the road is using a wood heater and the smoke got into your house. I know what the migraines feel like when I've slept in a room cleaned with the wrong products.  I know what it's like to feel nauseated every time you eat because you've had to wear sunscreen two days in a row and now your body is reacting badly to any foreign substance.

Trust me, no one makes this stuff up to inconvenience other people.

I can't relate directly to the woman in this blog because I don't believe my MCS has ever been close to this serious (though I honestly dread to think what would happen if a vindictive neighbour decided to spray my yard with pesticides).  I do hope however, that her story serves to underline how serious a condition MCS actually is.  It's rare, but people do die of it, and its impact on day to day living should not be underestimated.

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.
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