Culture Shock or why I am Homeless

When I was 3.5 we moved to NAS (naval aviation Station) Pensacola. I went to preschool there at a local elementary school.  It was how early intervention worked back then, I got PT, OT and speech by going to school.  It was the 80s. Disabled people in headstart all went together.  There was another class for the average kids. I was one of the only kids in the  special kid class with a normal IQ (me, a deaf kid and a blind kid). I was too little to know how unfair it was. I loved school, the bus, the class. I loved my friends and I loved my teachers. I still have fond memories of the room and eating ants on a log and listening to stories and how the discipline system worked and our Halloween party. I have a picture of my best friend in a box under my bed at my parents’ home.  It is in a rainbow colored heart shaped picture frame. She is wearing a purple sweatsuit and has a big smile on her face.  She had brown hair and blue eyes. I remember I wished I had blue eyes like her.  Now when I look at the picture I know she has Downs’ Syndrome. Her blue eyes are classic almond shape with epicantal folds… But back then she was just my friend. Back then I didn’t know that there were two classes. Back then I didn’t know that there were two worlds.

In Kindergarten I was put into an average class. I was 4 and tiny. Other than telling my teacher off daily for trying to make me hold my pencil a way that was utterly impossible for my already arthritic fingers I loved school as much as I did the first time. I had lots of friends. We still get Christmas cards from my best friend Joey’s Mom. I struggled a little with phonics but once we all figured out that kids who only hear 50% of the stuff their peers can don’t really get phonics I jumped 3 grade levels in a single year in reading.   I made the transition between the worlds without much drama. I didn’t even know what was happening. We moved to Maryland, so I had no idea that all my friends from pre-school were in a different class.

There is a story that I have no memory of that apparently on the first day of kindergarten some kid asked me why I walked funny and I told him: God made me that way and if he didn’t like it he didn’t have to be my friend and stormed off dragging Joey and some other kid behind me.  Apparently the teacher cried when she told my Mom about it. I don’t remember it.

Now I tell people I have a procollagen 2 mutation on chromesome 12  that leads to osteoarthrits, hearing loss and myopia and I am going to be doctor if they don’t like it they can buzz off.  I never looked back after making that transition. I did well in school after the phonics stuff resolved, did all the honors track stuff in secondary school.  I was the only kid in any of my high schools who participated in programs on both sides of the EC (Exceptional Children) office:  special ed and gifted ed. I had very few disabled friends growing up except for Aaron who lived far away in NYC and the occasional hospital roommate.  I grew up in the average world.

When the internet happened in middle school which led to the Kniest group I started to actually realize that I was not alone. I became very uspet and agnry at the injustice I saw in the lives of other disabled folk. This led to Romania and intense study of disability rights laws and movements. This led to after three years of struggling with saying it…the realization somewhere around the time I was demanding UVA widen the doors of their anatomy lab that I was an activist.

I wrote my personal statement for medical school about how listening to the stories of other disabled people in the waiting room of AI Dupont Children’s Hospital and in the institutions of Eastern Europe called me into medicine and providing high quality health care and justice for my fellow disabled folk. Every school I interviewed at it bought into it. Heck I bought into it.

But you see I am a fraud. I may look disabled. I may walk disabled. I may talk about disabilty. I may claim to understand. But its a lie.

I am at best a double agent. You see I don’t fit in with my pre-school class anymore.  I don’t even fit in with the disabled  kids with average IQs anymore.  Recently I made a new friend. We are the same age, we are both part time chair, part time walkers. Both born with our disabilities. Both live in the same city.  Same race, same religion.  Completely different lives.  She looks at me with awe…I drive a car, I live on my own, I am in medical school, I went away to college, I travel, I cook, I date, etc, etc  She lives at home, she volunteers at the hospital I am learning medicine in, she doesn’t drive and is living off her SSI disability check.  Tonight I met her Mom. I set her in living room and felt flushed. Her Mom talked about me like I was a superhero.  She looked at me like she wanted to use the i-word (inspirational)….

and I left feeling homeless and a little guilty. Somewhere along the way of middle school dances, school plays and AP exams I left my people behind.  I am not sure when I learned about the two classes…but by the time I did I knew where I belonged… I claim now as doctor to get them. Heck my medical school has me give a lecture to the first years about how I get them. Everyone seems to think I get them.  But the secret is I don’t get them.  I find it hard to relate to them. I can understand their medical experiences maybe but I find it hard to understand their lives. And tonight is just example of a wider reality. If you look at the statistics the average young woman with a birth defect or congenital anomaly is not me, its my friend.

I feel like I have become a interpreter for a tribal language that very few people know. I speak gimpspeak and normalspeak.  In Eastern Europe, I have heard westerners lament that they feel they have tainted their translators or friends…they have given them glimpses of another culture and changed them.  I have been changed.  I live between two worlds not fitting into or being accepted in either entirely.

So here I am 21 years after pre-school wishing in some ways that I could go back to when I didn’t know there were two classes. Where I thought that my friend with the brown hair and the big blue eyes was beautiful and I loved her with a undying childhood loyalty. She was  not a diagnosis, not a statistic not someone who I had special insight  into for the betterment of society at large..and to her I was not awe inspiring for my average intelligence or inspirational for my limp or my hearing loss… to us the other was just simply a friend.