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.

I like the funny looking ones best.

On the way to skiing I visited the one other Virginian with Kniest. He is 10. I haven’t seen him in 6 years.  He is one of the coolest kids I know. He has a zoo in his room with a snake, frogs, several lizards and a chameleon. I held them all to his delight (adult females who have affection for reptiles and amphibians are hard to find).  He is also an artist and has beautiful, framed colored pencil drawings all over his house.   He is brilliant, makes straight As, has a great sense of humor and a fun personality.  He also happens to be the size of the average 4 yo and we have the same face and eyes and hands.

And for the first time in a while I thought about what it would be like to have a child, my child with Kniest.   I remember being a teenager and thinking when I am older I will know what I want. I will know rather I am ok with 50/50 odds and if I could live with the gulit of knowing that I could have prevented my child’s disability by adopting.  The truth of the matter is I am 24 and probaly more confused than I was at 14.

Its such a multifaceted decision that is so caught up in my own fears and insecurities and identity that I find myself running in circles.  On the one hand, who doesn’t imagine having a child that looks like you and that has similar life experiences to you?  And besides I am always talking about how I would never have been the strong woman that I am today if I have been born average. And when I see  children like my friend who I visited who are amazing, gifted and adorable I can’t help but dream about having a child like that.  Lots of women with Kniest have babies..many have one average and one with Kniest. And ultimately God would make the decision not me.

But on the other hand, I have this image of me sitting in a surgical waiting room somewhere wringing my hands and facing agonizing gulit knowing EXACTLY what my kid is going through and knowing that I could have prevented it.  Even knowing God is in control would not entirely assuage my gulit. I advocate for adoption naturally….no matter what I want to adopt anyway…but I think in the deep places in my heart I always imagined being pregnant with my own at least once. A small side note if I did decide to carry my own child…there will be many in my profession who think this decision down right irresponsible. I don’t really care what they think…but I am sure it will make for an interesting 9 months…

ultimately I wouldn’t’ have a kid  naturally (I will adopt with or without the guy ) in less I found the right guy anyway and he would of course have some say…so I suppose this endless monologue is futile. …I just find it interesting that when I thought the decision would get easier and more well defined….its has gotten so much more complicated and ambigious.

Learning Stuff

I confess I spend a lot of my life as a medical student feeling ridicously dumb. Sometime this feeling paralyzes me and I forget how to spell my own name much less what a rt bundle branch looks like or the 17 causes of pancreatitis.  Sometimes I forget  simple things.

This past weekend I went skiing again and I apparently didn’t forget what I had learned two weeks before. It was even better than the first time.   I can turn now and break my speed. I love turning I love cutting into the side of the hill and then cutting hard back to the other side.  Its sort of like flying. By the end they were talking about taking me off the tether at my next set of lessons and I was terrified.  I knew without the tether I would fall twice as much and I was afraid of getting hurt and as always of feeling dumb.

I need to cut my tether in med school. I need to be ok with falling, with hurting my ego and realize that falling is what you do when you are learning.

yes its a cheesy analogy deal with it.

moral model on steriods and what the heck…

The moral model….think disability in terms of The Hunchback of Norte Dame, Phantom of the Opera, some bibical stories (without the proper context!!!?!?!)…its either a curse or a special, special, inspiring gift. Both are hugely problematic. The later which is very common in many good intending avg people who want to HELP disabled people particularly cute, small kids with disabilities.

One of my favorite peds professors is on the board at a camp for kids with chronic illnesses or disabilities. He really pushed me to apply to work some family weekends this fall. And I did.  And this weekend I went. the place is amazing, financed by Nascar it has the best of everything in terms of facilities. Its by far the nicest camp I ever been invovled with.  The program is well run, creative, fun and well organized. Every last detail is scrutinized to make just right for disabled people and their families.  Its flawless.

well maybe not flawless….I noticed something odd the moment I walked into the first staff meeting. I was the only one in the entire room on wheels. I would discover later that there was one other staff member with a disability. She has been volunteering for a year…this was the first weekend they ever let her actually work on her own as full pledged counselor. …oh and she is a former camper. (bang head against wall)

The time with the campers was great. I really enjoyed pouring into the kids and watching them try new things and be kids. The only thing I noticed was a subtle sort of side effect of the flawless attention to detail.  Every need of each disabled person was taken care…to the pt that there was no reason to push oneself, no reason to clean one’s own table, no reason to really be remotely independent.  I get that they want to give the kids a vacation and to have FUN! And I want that too I just want them to realize that they can relax and have fun and be independent whole human beings. Isn’t that the point of camp? TO teach indepedence and confidence…not to be babysat on steriods right??? …someone comment and tell me if I am nuts.

The time with the staff was more awkward than med school orientation (which is saying something). Now I am going to admit I had stuff to do in my free time study, catch up on some computer stuff , talk on my cellphone (or try I had poor reception) and nap… yes nap. (in short I didn’t spend a lot of time trying to make new best friends) But my fellow disabled counselor who has been working there for over a year tried hard to hang out with the rest of the young adult staff members and got left behind and left out.  She followed me around for all the non-camper time. I liked her and I enjoyed her company but her utter isolation from the other staff made me furious.

My whole camp experience can be summed up as the following: When the disabled person is small, cute and someone who needs my attention and care they are fun and great.  These cute, cuddly creatures are SPECIAL and have SPEICAL needs..we most help them with all things so they feel SPECIAL and and by doing this we think are empowering them (what we don’t know is we are renforcing the social norms that they will never be able to do thing sfor themselves)…Now when the disabled person is grown up sized and my peer and wants to be treated as an equal they are well…maybe scary, maybe annoying, maybe they cramp my style.  They are still SPEICAL however and have SPECIAL needs and thus probaly cannot take care of other SPECIAL people. The sheer irony of the whole situation clouded the experience for me.

I think when i go back in March I am going to take a giant NOTHING FOR US WITHOUT US (disability rights movement catch phrase that applies so well to do this) in big, big sparkly red letters and in the middle of the night I am going to hang from the rafters of the dining hall….maybe I will get some of the teenage campers to help me we can stage a sit in…and demand to be treated as equals.

ok not really but I did call every disabled person in the tri state area I know and bribed them with promises of brownies, chocolate and free pediatric care one day if they apply to work on staff.   and frankly any avg people who understrand this entry…if you live in NC…e-mail me and I will send you an applicaiton.

end rant.

best week ever

In the last week….I discovered

……next summer I am going back to ROMANIA!!!!!!!!!!!!!!!!

…………..and ITALY!!!!!!!!!! (for the first time)

……………………and SPAIN!!!!!!!!!!!!!!!!!! (for the first time

…………………………….and then I am going to Kenya in JAN 2010!!

…………………………………..also I learned how to wheelchair ski!!!!!!!!!!

(http://community.webshots.com/user/wakeelf3)

best week ever. Its a looong story. but the short of is it. Tori is graduating and the Longs are carpe diem! and going to Europe. And it costs next to nothing to fly from Spain to Romania so naturally i am going for three weeks. Took me a litle while to clear it with the school but I have some connections and made it work.

Fourth year in general is going to rock! I am going to spend two months abroad, a month at Dupont (the childrens’ hospital I spent all my patient time at) with my peds ortho, peds, peds, peds all the time and then finishing up with ED with Kaniksha (best friend in med school) next March!!!!