Two days in Nashville for the Little People of America National Conference.
Saturday, July 3, I sat all day in a board of directors meeting. Though the organization has accomplished some positive work over the past year, the meeting was pretty standard, filled with reports of what had happened in the past 12 months, and requests for funding to make similar achievements in the year to come. I wish the organization were at a point when annual meetings were spent developing a bold vision for the upcoming year. For example, setting goals that would position the organization in Washington D.C. or setting a clear plan for creating a full time staff to work on policy issues.
Today, Sunday, July 4, I sat in on a meeting of the Medical Advisory Board, a volunteer group of doctors and geneticists who consult for Little People of America. The board is a huge value to the organization. Each member offers free consultations to members of LPA during the conference. Without the MAB, some LPA members would never have access to a doctor with experience in the field of dwarfism. During the meeting, the board addressed a few very serious issues, like a 66 percent rate of hypertension among males with achondroplasia and a five percent mortality rate among achodroplastic dwarfs under five years of age. Without the Medical Advisory Board, I am not sure what group would pursue the concerns, and if another group did, would LPA have such close access to the group?
That being said, I couldn't help but think of the dichotomy between the medical model within LPA and the model within Access Living, where I work my nine to five job. Under the theory of the medical model, it is doctors who know what is best for a person. Under the medical model, a person's disability, or impairment, is something to be fixed. At Access Living, advocates strive to give voice to the person with a disability, not the doctor. At Access Living, it is not the doctor, but the consumer, that knows best. Access Living fights against the medical model.
On the other hand, here are a few examples of the strength of the medical model within LPA. Speaking about the mortality rate and the importance of screening young dwarfs, a doctor on the board said, "there is no substitute for clinical judgement or a clinical exam." Another example is a workshop led today titled "Quality of Life." Each presenter was a member of the Medical Advisory Board. Finally, the board was critical of a workshop on hearing loss organized without any input from the Medical Advisory Board. The workshop was run by a person who has experienced hearing loss. As I sat in on the Medical board meeting, I imagined what some Access Living advocates might be thinking. I wondered if they would speak up? I was in no position to, nor did I think it a good idea. While a person who has experienced hearing loss is certainly qualified to speak about the subject, and a quality of life workshop should include someone outside of the medical profession, there is room for every "model." The difference between the existence of models within Access Living and LPA underscores the importance of taking the best of both models.