Thursday, February 20, 2014

Always a Poster Child: Disability, Scrutiny, and Autonomy - by Elena Rose Lewy

In 1984, when I was 3, I met John Madden.  My family did not know who he was, but little did anyone know that exactly who he was would mean YouTube footage almost twenty years later.  It’s John Madden.  People own him.  He is a commodity, and not a person, but a thing, a brand.  

As was I.  The Madden experience became one of a few maddening, public, ridiculous displays of me being “cute.” Of my disability being “manageable” in the public eye.  I was a good specimen.  It ended up happening again. And again. And again. Uniformly, it would seem that my family felt empowered, while I felt that I simply wanted to crawl into a hole and become invisible.   It’s embarrassing, when you’re clinging to the ages of childhood pride, to be featured in articles which proclaim things about “good cripples,” even if they’re talking about people other than you. 

I eventually was not a “poster child” anymore.  There were other levels of scrutiny.  Doctors’ appointments and assessments conducted in front of rooms full of medical students. A specimen for Cerebral Palsy.  A science project to be pulled on and evaluated.  Scrutiny at home for what I was doing, and the moment my mother decided I was about to “catch the gay” from the Indigo Girls albums I was listening to.  I was 12, and my being queer was not on the radar. I liked folk music, especially Emily Saliers’ voice and guitar work. I would not experience my first girl-crush for two years, and I would not come out for another two years after that.  But to my mother, at age 12, I was about to catch gayness.

It doesn’t matter to homophobes if they are bigoted.  And it doesn’t matter to encroaching able-bodied people if they are creepy and without boundaries.  They will still try to prevent you from catching the gay. They will still comment on everything about you.  Traveling across the city, everyone feels they can stop you and evaluate your life. They want to tell you the story about their disabled cousin and how even though he’s a, well you know, they accept him. They want to ask you if you’re that girl they knew five years ago.  Part of your disability may well be face blindness, but you can tell THIS IS A STRANGER, and THEY’RE BEING CREEPY.  But people are totally sure they know you. They’ve met a disabled person before. So they know you.  You’re quite obviously her. You’ve just forgotten about it. How rude of you.

They want to give you “advice” about why you are not succeeding.  It often begins with something like, “I know what’s wrong with you.” And you may want to laugh, because even the doctor and all his medical students spent years studying you, scrutinizing you and evaluating you. But the woman on the corner between you and the train station KNOWS what’s wrong with you.

You’re DOING IT WRONG.  You should be doing it exactly the way you’re being told to do it. By everybody.

It’s not just for the big stuff, like parenting, (“You know if you had a baby you’d have to take care of it, right?” / “It’s okay, if you want kids, *I’LL* just come move in next door so I can take care of them when you can’t. [How would you know what clothes to buy them or what they’re going through? You’re disabled.]”), or sexuality (“So, like, can you…?” “Wait, you run a website on disability and WHAT?  But you’re…”), or finances (“Income must be reported and evaluated, along with disability status.”).  It’s the small stuff too, like your sleep, the hours you keep, the time you spend on the Internet. (“Elena, your sleep patterns are inappropriate.”)

Maybe it’s the poster child thing, or maybe it’s just being careful of boundaries, but I’ve learned very well I’m not allowed  to make these kinds of assessments for other people. Not even famous people, like John Madden, who belongs to every NFL fan.  I studiously avoid certain kinds of news about people, famous or not. Sometimes it explodes all over my news feed, like when my favorite actor of all time, Phillip Seymour Hoffman, died this year.  Or when Ellen Page came out. In both cases, I spent a lot of time on people’s threads gently reminding them to afford these people human dignity.  His death does not belong to us, and her sexual orientation does not belong to us either. They did not act with us in mind, gearing up for a major disappointment for their fans. They acted out of personal needs, be they psychological or physiological.  Their choices, forced or not, belong to them.  And mine belong to me.

There are quite a number of people who don’t like that.  For most of the people I interact with in my daily life, it would be easier if I sat down, shut up, and took what was offered to me, accepting the scrutiny as my lot in life.  Well, I did adapt to it, at the age of 12, when I took to the Internet in 1993 and became one of the heaviest users, mostly just trying to have a space where I could be heard and allowing that to blossom into being an Internet loud-mouth.  There were no pictures then, and I didn’t discuss disability at first.  It was easier in those days to avoid it and only disclose to people I trusted, who I was going to meet in person.  That was the function of the Internet, then. Not hiding, exactly, but a break from all the not being able to hide a single aspect of anything. These days, the Internet is quite different.  Hyper-scrutiny applies to everyone on the Internet, although one can argue for there being degrees, and people might try to get away from it by interacting in person, if they could pull away from Smartphones. It’s funny in a way to watch people subjected to something that’s been reality for me since I was born.  I was alone then, and I’m not now, although it often feels that way.

Speaking out is something I cultivated to counteract all the scrutiny.  I go in cycles with it of hiding it (I’m told this is a “pattern of abuse”), or talking about it all the time.  The cycle repeats.  But wherever I am in it, there I am.  Right now I’m talking about it, and so I’m here.  It might be a while before I shut up.  Or maybe I never will.

[Image description: a meme, stark white allcaps on a grey background, saying, "The only people who are mad at you for speaking the truth are those people who are living a lie. Keep speaking the truth."]


  1. Wow. You are telling a story that is so similar to mine. Thank you for putting all this out there. Sending lots of support.

    1. I am just seeing this now, sorry for the delay in reply. Thank you for the support, Corbett! And you are welcome, I'm glad the post resonated. :)