Wednesday, June 30, 2010

Questions Not to Ask People with Chronic Conditions

I had to go downtown to get a prescription filled when I ran into a former co-worker, who I will cam James.  I normally try to avoid interacting with people that I used to work with, because I have very little in common with them.  Unfortunately, we ran right into each other and in the interest of good manners, I was forced to acknowledge him.  His first comment to me was congratulations on "figuring out how to fake an illness," so that I could get a pension.  Keep in mind, that he was talking to me while I was sitting in my scooter.When I said that "I am not faking I have sarcoidosis," he of course just nodded his ignorant little head. 

You see, since it is a disease that he has not heard of, it could not possibly be legitimate. This by the way, is a common response when I tell people what I have.  I have actually developed a little spiel to explain my various conditions even though  I know that five minutes after they walk away from me, they will forget every single word that I have said.  I cannot tell you how it irritates me to have to explain my health condition, and to watch people nod their head like they care or understand.

To prove that an understanding has not been reached after my canned spiel, I usually get, so how do you catch this and are you contagious?  Trust me, James did not disappoint;  he followed true to form.  It makes me want to say, yeah it's like the bubonic plague, here let me breathe on you. If what I had were contagious, would I really be riding around in public interacting with others?   You don't catch a chronic illness. To me this seems so very basic and yet so many are clueless when it comes to this.

And just when I am beginning to think of running over someone's foot comes the comes pièce de résistance.  "So, is that some sort of weird Black disease, I mean can White people catch it?," said James.  Believe it or not, this is a question I have been asked REPEATEDLY.  Now I will admit that there are certain medical conditions that people are more prone to because of racial differences, but to outright ask someone if this is a Black disease is RIDICULOUS and RACIST. 

Not only do the differently abled have to deal with gatekeepers who think they know what it is like to live with our disease because they have studied it, we constantly have to deal with questions from the general public, because a differently abled status is constantly up for a debate.  It is not enough for someone to say my body does not function like yours.  We must explain why and prove that we are worthy of taking on the label of disabled.  This is something that often happens with people who have invisible disabilities; however, if you have a condition that is not well known, even if it has obvious physical manifestations, there is an assumption that this condition is not real.  This means that we have to fight to have accommodations granted or simple basic courtesy. Heaven forbid I stand up and get out of my scooter in public, because it is assumed that only people who cannot walk at all would need the aid of mobility equipment.

People need to think about the questions they ask the differently abled.  Just because you are TAB, does not mean that we are a curiosity that you can grill while you decide if our condition is real.  This is a very large sign of able bodied privilege.  Just as it is unacceptable to ask a person of color to teach you about racism, it is unacceptable to believe that you have the right to be arbiter of our bodies.  Google works, it really does -- and if you just have to know what we live with, a few minutes on the internet will answer all of your questions. It is far better than making someone recount their experience or their differences, because you want them to.  The moment you expect someone to perform, you are displaying your privilege.