Waiting for the big Pill.

(Prelude for non-disability rights fanatics…There are three theoretical models of disability that describe three ways that disability is seen by various societies and culture. The first is the moral model: the disability is a curse, blessing, gift, task, cross to bear, etc from God. The person is both spiritually and physically cursed (or in some rarer cases enlightened). The second is a medical model where the disability is a disease and the person cannot be seen as a whole person worthy of engaging in society until they are “fixed”. Third is the biopyschsocial model which sees disability as a human experience that does not in anyway change the individual’s rights to inclusion and worth within a society. Thus first and foremost resolving disabilities is in resolving misconceptions and fighting for equality.)

I have had some medical model conversations lately. It started a couple of weeks ago when I spoke to the first years. Then carried over to a new disabled community I have been wandering around online. There are different ways to talk about the medical model. You can talk about how medical professionals have been gatekeepers in the past and how they have made decisions like institution or no institution or to sterilize a disabled patient. Its easy to know where you stand as a disabled person on the historical medical model. The discussion heats up when you start tossing the word CURE around. In the age of stem cells and gene therapy, disabled folk of today might actually see CUREs to some disabilities in their life time or at least their children might. Its already sort happened for some forms of congenital deafness (cochlear implants).

I have recently met some very passionate disabled folk who are very, very, very pro-medical model. Including one disabled physician. Most average people when i tell them about the medical model assume that of course disabled people are very pro medical model: They want to be normal.

I am traditionally extremely anti-medical model. An ironic stance for a young doctor to be? Ironic that I am spending 12 hours a day studying cures and yet I don’t want one myself?

My dislike for the historical model is obvious. I have seen this in the present as well over seas. For a child to attend school in many places they have to be able to walk unassisted otherwise they are seen as a risk to the other students. Kids whose families can afford it spend their childhood trying everything medically possible to making something like walking happening rather than making childhood happen.

In terms of CUREs. You have to understand I have never known an average life. My Kniest is a part of me like having brown eyes and I am not talking in the biological sense. I can’t even really fully fathom not having it. I can fathom it not progressing. If they come out with a drug that stops or slows the progression of OA I would probably take it barring it doesn’t kill other major systems or give me cancer (worse problems). But if there was some magic pill that would somehow magically make me average I would be hesitant. Its not that I crave pain and suffering its simply that I don’t feel broken. In fact I feel some times strangely liberated from my culture’s obession with physical bodies equating to self worth. Not because I am some special, enlightened angel (moral model) but because my life experience has taught me something different.

Its not that I don’t acknowledge my limitations because I do every day. But instead of focusing on them and defining my life or even my self worth by them I just file them away along with my complete and utter inability to use commas properly.

Now back to the discussions….when I listen to disabled people now in the age where cures are real I see both sides more than I did in years past. I emphasize with the deaf community rejection of cochlear implants, they feel like the hearing world is attacking their culture, robbing them of their language and unique experiences (sort of vaguely imperialistic). I get it, they don’t feel broken. But I also relate and understand to the folks with spinal cord injuries who are really excited about stem cells or the kid with OI (osteo imperfecta, brittle bone disease) who would like to break less bones in the future. Because our lives are harder and there is no shame in wanting less pain and suffering, its human nature.
The shame is when the cure is your keeping you from your life. What concerns me is statements like I would never think of applying for that professional school (I am not talking about World Cup Soccer (the non para-Olympic kind)…think everything from teacher to doctor to lawyer) because of my disability but I would love to do that if they come up with a CURE. If your world view is “I’m waiting to be fixed” then slowly, slowly, subtly (or not so subtly) you will find yourself focusing on your broken-ness and it will rule the way you live your life.Disabled folk have spent the last decades fighting the conception that us “the broken” shouldn’t fully participate in life. If you want to end your pain, I relate to you, if you want to preserve your experience I get it. What I don’t understand is why you are waiting on medical science to live your life. Thats where the medical model is evil and its why it alarms me when I hear the word CURE tossed around so much in the disability world. I am not saying everyone who is “pro-cure” thinks this way but I think there is risk there and it needs to be understood.

Bless (with my super special inspirational special needs child moral powers ) any of you who might actually read this neverending entry…