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I'd like to add another fiber into this social model vs. medical model thread, and perhaps make it a bit more concrete.   I would be interested in hearing thoughts and perceptions about we researchers and service providers who sometimes find ourselves struggling to reconcile (1) our efforts to improve the situations of persons with disabilities versus (2) the notion that some models would suggest that the individual differences we're talking about are just that, individual differences, and therefore not only don't warrant "help" but it might be improper and presumptuous to even propose that help.  

 

I am a research director at a facility (yes, we might be viewed as an institutional or perhaps semi-institutional setting) that provides services to persons who have considerable medical complexity associated with cerebral palsy, spina bifida, Lesch-Nyhan disease, etc.  These are mainly folks for whom their situations include potentially life-threatening physical issues and care at home would be quite difficult and perhaps medically risky.  Consequently, some of what we do here remains well within a medical perspective.  No brainer; I don't think anyone would argue against that.

 

But . . . along with the medical stuff comes a range of therapies:  physical therapy, speech therapy, occupational therapy, music therapy, recreation therapy, etc., some of which certainly has "medical" justification, some might not.

 

We also do research in ways to measure educational performance in children with "developmental disabilities" and improve educational strategies.  We do try to focus on measuring strengths and devise ways to tap those strengths and build on them.  We do try to keep our eyes on helping the individual grow rather than on what might be "holding them back."  Nonetheless, in doing so it is not possible to restrict one's vocabulary only to words with a positive valence or neutral connotations, nor is it possible to wear blinders to "individual differences" on which we might be able to impact in a way that allows the individual to cope with the world a little better.  And in the process, we do talk about "deficits" and "impairments."  

 

Much of what we do is clearly intended to address some of the social barriers imposed on the folks we serve.  Example:  we often learn from the people we serve who communicate in ways other than verbal that when they go to an acute care hospital or some other healthcare setting, they are often ignored by the physicians and nurses.  All questions are addressed to the driver who brought them to the hospital, not to the person in need of care.  So, I spend my Wednesday afternoons working alongside two persons who communicate via yes/no head-nods in training medical students how to do interviews with their patients who communicate in ways other than verbal and to respect their autonomy and their ability to serve as a full partner in the process.  I would tend to frame that activity as emerging from, and consonant with, the principles of a social model.

 

You can see by all of the quotation marks in this posting, I am (as I guess many of us are) hesitant and cautious in my use of language, and that hesitance is a reflection of my lack of understanding of where people like me, and facilities like ours, belong in this conceptual net of disability.  In your perceptions, where do folks like us, or more appropriately, the "work" we do, fit into the established and/or emerging frameworks to conceptualize disability?



Kenneth Robey, Ph.D., Director
Matheny Institute for Research in
Developmental Disabilities

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