Summary
Part 1: My Initial Steps on the Path to an Understanding of the DJCAS
The clinic was run by a retired family practice doctor, and employed a PT and an OT. The focus was helping parents of children with brain injuries support those children in their homes and communities. They were all parents who had not followed the universal advice, «put them in an institution and forget them», that was the only support available in the early 1970s. This experience was the first of many that told me how The System overdetermines the segregation of real support to a system that it can control and use for its own purposes .
Parents watched their social relationships disappear over time as friends abandoned them to their struggles. A common first goal for the families was to build a minimal alternate support system so that the parents could, say, go on a date without having to fear. That meant a trained babysitter. No typical babysitter would take the job because of fear and disability stigma about managing tasks like suction or seizures.
Home nurses were incredibly expensive and no health insurance covered their use as a babysitter. Our first jobs were to be trained to do basic care tasks and crisis intervention for families to put their personal relationships back on a more normal track. When I realized this, it was my first introduction to the almost universal cultural devaluing of people with disabilities and their families, with The System of supports being a vehicle for achieving this. In the early 1970s, there was the beginnings of a movement to deinstitutionalize people with are labeled as having intellectual and developmental disabilities or cognitive disabilities.
The clinic began to receive contacts from families whose children had been returned home from institutions without explanation. Some investigation showed that these returns were in the institution's interest, not the family's. One group included children that the institution thought might die, forcing a report with cause of death from an official investigation. Since there was more scrutiny of these institutions, they thought it prudent to send them home to die.
The second dimension of disability justice that I began to understand was how real support is a more ecological than the medical procedural approach that was the practice of medicine at the time.
Part 1: My Initial Steps on the Path to an Understanding of the DJCAS
“Our minds are finite, and yet even in these circumstances of finitude we are surrounded by the possibilities that are infinite, and the purpose of life is to grasp as much as we can out of that infinitude…the limitless variations of choice, the possibility of novel and untried combinations, the happy turns of experiment, the endless horizons opening out.…
And nothing is easier to lose than this element of novelty. It is the living principle in thought, which keeps all alive.”
(Whitehead, 1934-1947/1954, p. 160)
I returned to the US in December 1970 from 21 months in Vietnam without any meaningful purpose. Over my first year back, I gradually developed moderate PTSD, and experienced the “blossoming” of a moral wound that currently , while less emotional, still impacts my life experience, now in my 75th year.
I tried singing in a bar band that was good musically but bad as a business (more performance art than enterprise). When it crashed and burned after 6 months, the keyboard player found a medical clinic where we could volunteer, and my journey toward a deeper understanding of disability justice began. I am still expanding and deepening that understanding of DJCAS.
The clinic was run by a retired family practice doctor, and employed a PT and an OT. The focus was helping parents of children with brain injuries (whether genetic, chromosomal, TBI, neurodegenerative, etc.) support those children in their homes and communities. They were all parents who had not followed the universal advice, “put them in an institution and forget them”, that was the only support available in the early 1970s. This experience was the first of many that told me how The System overdetermines the segregation of real support to a system that it can control and use for its own purposes (political, financial, etc.).
And I mean institutionalization was the ONLY support alternative. There were none of the currently available supports. Parents watched their social relationships disappear over time as friends abandoned them to their struggles. Doctors largely held them in contempt (and said so) for having the nerve not to institutionalize, and often refused to provide healthcare at all.
A common first goal for the families was to build a minimal alternate support system so that the parents could, say, go on a date without having to fear the medical harm of their child. That meant a well-trained babysitter. No typical babysitter would take the job because of fear and disability stigma about managing tasks like suction or seizures. Home nurses were incredibly expensive and no health insurance covered their use as a babysitter. Our first jobs were to be trained to do basic care tasks and crisis intervention for families to put their personal relationships back on a more normal track. The support tasks involved were not difficult to do. When I realized this, it was my first introduction to the almost universal cultural devaluing of people with disabilities and their families, with The System of non-existing supports being a vehicle for achieving this.
In the early 1970s, there was the beginnings of a movement to deinstitutionalize people with (what today) are labeled as having intellectual and developmental disabilities (IDD) or cognitive disabilities. The clinic began to receive contacts from families whose children had been returned home from institutions without explanation. Some investigation showed that these returns were in the institution’s interest, not the family’s. One group included children that the institution thought might die, forcing a report with cause of death from an official investigation. Since there was growing scrutiny of these institutions, they thought it prudent to send them home to die. Another group were individuals whose behavior (and the medieval responses by the institutions to that behavior) were prone to evidence of abuse like bruises or broken bones which would be obvious to inspectors.
So, my growing understanding of the appalling place of people with severe disabilities and their families in The System’s social order of the US began. It took me decades to arrive at my current understanding, and I participated in practices that I would view now as abhorrent (the use of shock or confining approaches to force behavior change), but I was beginning to see the truth and the truth expanded over time as it does when you pay attention to the reality of indivudal human experience.
The second dimension of disability justice that I began to understand was how real support is a more ecological than the medical procedural approach that was the practice of medicine at the time. The support logic of the family support clinic ran like this:
Parents of children with severe brain injuries can’t see what their children are trying to do because the children don’t look like the developing children they have been exposed to in their social communities (i.e., they were institutionalized and never a part of the ongoing local social community)
While support for the families was certainly focused on the child’s developmental acquisition of skill and capacity, the parents also had to learn how to see what their child was trying to do and facilitate it in real time.
This kind of perception can’t be educationally taught. It is only absorbed by real-time engagement in the task, supporting the child in the moment to succeed in skill and understanding expansion, and simultaneously building a deeper understanding of the child’s efforts.
Thus, the parents were learning to see their child as an active agent, trying to develop like all children do.
This dimension is a very deep idea that applied well beyond the clinic’s borders, the clinic’s mission, and the times in which I worked there. But, I only slowly became aware of the astounding potential impact of this “clinical” insight.
