“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Tuesday, March 12, 2013

The wrong models (commoditization of disability)

Some recent thoughts...

The state is focussed on a medical model which places disability within the individual with impairment, not seeing the social consequences or facilitating the support of the community. This is not to necessarily advocate for a social model, however, efforts at change are almost exclusively aimed at the individual with impairments, rarely at the community, or changes in the community such that integration would have a greater likelihood to occur. We ca easily see this in the activities in which paid service workers engage being so community isolated and individual focused.  Two lives result, disconnected as a result of the power of human service workers. 
Power in their regulation of all aspects of life.
Power in ensuring what is administratively convenient.
Power in their lack of training in community integration development: yet they are undaunted by a lack of knowledge.. 
Power in their refusal to integrate those with disabilities into their own personal lives: partly due to a misunderstanding of what is allowed, partially not caring.
Power in their use of community integration as something unnatural...a reinforcement for good behavior in one's regulated life.  Integrated life is like the ice cream cone you get for being a particularly good child...very foreign and outside of your typical experience, which is what makes it particularly good as a reinforcement.

The flip side is the way the Christian church has developed.  As in previous posting, they have been "fed in a particular way".  The result being that church universal turns care of persons with disabilities over to the state and the church by and large doesn't integrate, evidence of a lack of love toward people with disabilities.

The end result of both of these models is exclusion from the natural and reliance on the expensive: community based natural supports largely unavailable, paid for supports from "experts" pervade.  The natural result of community integration is like a metaphoric seed that never gets the opportunity to sprout and grow. When it does begin to grow, it becomes threatening to those who will lose their power over the person with the disability.  The regulated learn life unregulated and begin to like it.  But the threatening nature of community involvement results in the growing seed being cut back to the roots by those with power over the regulated and unregulated lives of persons with disabilities.



Gary Sweeten said...

I agree completely and would add one key point. The professionalization and medicalization of individuals leads to a failure to even take the family members into consideration. Individual psychology and modern medicine tend to look at the disease not the human with a disease /disability and ignore the relationships into which each of us are placed. That leads to a poor diagnosis, terrible treatment interventions, isolation and a lack of community understanding.

We did a year-long research study with the families of children with a disability. We sent each family a series of questionnaires that were followed a personal visit for two hours by a team of us. You can read the results on our web page at www.sweetenlife.com

Keith said...

Gary, I did have a look at your site but was unfortunately unable to find the link to that survey. It would be interesting to see it.

Many Christian communities have become accustomed to the idea that 'professionals' are responsible for the care of those in their community in many different aspects of life.

It is exciting, though, to see communities that have challenged this assumption and aren't afraid to step in and support one another in a loving environment.