The Many Sides of Disability

I first heard the term “ableist” when the movie Me Before You, came out. The story was about a rich guy, who wanted to kill himself because of he did not want to live in a wheelchair. The movie ends with a young woman shopping with the money the dead disabled guy left her. Cinderella got everything and didn’t have to marry the prince.

Throughout history, the disabled have been dehumanized and treated like burdens. The caregivers are bestowed with sainthood in conversation, but poorly paid. People who claim to follow Jesus, talk about the taxpayer’s burden of subsidies for care and equipment to help disabled. Somehow, preventing fraud is a perfectly good justification for disabled people and their families having to live at or below the poverty line.

All of this is nothing new. I have been watching this happen since 1996. Why 1996? Because that was when disability became a reality to me. I could not conceive of disability being so complicated. Growing up in the 70s and 80s, I knew about kids in the special education classes. The schools kept them apart from us in fear that we would hurt them. And hurt them we would have. We were taught to pity them and then the the adult who encouraged pity mocked them mercilessly. Later, as my health deteriorated and abilities disappeared due to scleroderma, I was afraid of what I would become. For the past twenty-one years, I been praised for things like just getting out of bed or leaving my house. People expected less of me, and for years I expected less of myself because of my own preconceptions of disability. When I began blogging, some patients told me they were inspired, while others believed I didn’t seem sick enough.

When I got my first disabled placard, I was challenged by total strangers in parking lots because I did not meet their qualifications to use handicapped parking. I read about patients experiencing it all the time. It doesn’t help when the evening news does ratings blockbuster segments about people illegally using handicap placards. The American culture is tuned in to look for fraud, instead of need because of terms like; welfare queens and entitlement programs. Every system can be gamed, and Americans prefer to sacrifice the health of those in need to justify the spending of tax dollars; and in the next breath, say they are okay paying for our wall with Mexico. Then, Meryl Streep comments about the behavior of our not-so-presidential president, and everyone goes nuts.

The disabled community is upset because she didn’t do it right. The abled community is pissed because: How dare a celebrity give us her political opinion! Meanwhile on The View, one of the panelist complains about Taylor Swift not being activist enough for women. The disabled and abled communities are at odds with each other, instead of working together. It’s not from lack of trying. Throughout history, groups of human beings have turned against one another causing all sides to fall. This is just another one of those times. Ableist vs Disabled.

Then, I was told, “Karen you have a great perspective because you have seen both sides.”

What? BOTH sides? From the perspective of someone without experience with the disabled, there is only able and disabled. Disability types, causes and their issues are not two sided like a straight line. They are more like a four dimensional shape like a tesseract: We can conceive of it, but there is no way to physically make one. We can draw it out, it’s hard to comprehend and it can only be built in another dimension.

Image created by Jason Hise, matchimage.org

After Ms. Streep’s speech, I got into a Twitter discussion with disability advocates. In my opinion, I felt they were shooting the messenger. I had a hard time understanding the harsh criticism. Why couldn’t we just expand on her message? I saw a circular firing squad. Their view was different, and it took me a bit to understand.

Sometimes a good deed by someone who hasn’t had the experience of whom they are trying to help, can be harmful. More often than not, when able-body people try to help the disability community, they do more harm than good. I have know this to be true on a much smaller scale in my daily life. Strangers, close friends and family who have tried to assist me, end up injuring me in the process. One thing I have that hese disability advocates do not have, is the appearance I have no disability.

That “luxury” cannot be earned or granted to most people in the disabled community. Why is this a luxury for me? Because I have seen the transformation people make if when they meet me, and notice my disability later. All it takes is long sleeves and make-up. Some will say things like, “I didn’t even realize there was something wrong with you.”

In their mind, that is a compliment. I used to take it as one, but it’s not. Does realizing I have a disability change the context of a conversation? Yes, if I am a firefighter at a fire; but otherwise, no. I don’t like it when people assume my limitations should be taken into consideration as far as my capability. If one wants to know if I can move furniture, ask.

Well, I have edited this post to add the photo of a tesseract (properly) and now I realize there is more to cover. That’s a whole new post.