I am postponing the post I had planned for today because of the publication of a powerful work that I have been personally waiting for since 1971. The book is a rights-based, medical community narrative and argument to view persons with severe brain injury and alterations of consciousness and communication as human beings. It includes a single very detailed story of recovery that is used to illustrate the revelations of neuroscientific research into such injuries, with narratives of 40 other persons interwoven throughout the book. “Rights”makes an ADA-based argument that persons with altered consciousness because of brain injury must receive rehabilitation (both physical and technological) to restore consciousness and useful methods of communication with family, friends, and their community.
This might seem obvious to people in the disability rights movement, but there has been no more devalued group of people over the course of my adult life than people with consciousness-related brain injury. One need only watch the apparently annual rant by one of the doctors in “Scrubs” (a TV medical comedy!) about how their talents, training and personal value were being wasted treating people with dementia to grasp the ease and depth of the devaluing that occurs.
In the early 70’s, I worked at a small medical clinic that supported families with members who had severe brain injury due to many different causes. While most of the patients were children, there were a number who were older and who had disabilities related to consciousness and communciation (i.e., say from a motorcycle accident). While the support that the clinic gave to these people was not as sophisticated as is currently available, a number of these indiviudals recovered consciousness during the time I knew them. Their reports about what the coma was like covered a variety of experiences from dream-like to being aware of what was going on around the bed, but unable to respond. These experiences taught me that my ableist model of their subjective experience was not accurate and that surface judgements of capability devalued and so eliminated the possibilities for persons who were in comas.
However, my deep epiphaney in regard to people with brain injury, my understanding of the incredible superficiality that pervades our judgement of people with severe disabilities, came when the clinic’s OT went to evalute a 17 year old woman who had suffered a 20 minute cardiac arrest during an appendectomy. She had extensive brain stem injury from this event, and had all the hallmarks of flexion and contracture that results.
This was a few years before the clinical definition of persistent vegetative state became a generally used label for people with the kind of injury to consciousness/communication that this woman had. In the simultaneously empty and obscure medical venacular of the time, her diagnosis was “akinetic mutism”. This means she couldn’t move and she couldn’t talk.
The parents of the young woman were there to observe and participate in the evaluation. Although they understaood what the medical team had declared as her current and continuing state until she died, they had noted a difference in the way she responded to males and females when they came into the room. They couldn’t describe this difference, and their perceptions of their daughter cognition were dismissed as unimportant wishful thinking.
The OT printed “Blink your right eye” on a card and held it up some inches from her face. She blinked her right eye. Then the OT printed “Blink your left eye” in front of her face, and she blinked her left eye.Thus, at least in my mind, the edifice of social judgement and pity/contempt for people with severe disabilities crumbled for me for the rest of my life, though my understanding of the scope of ableism has continued to expand to this day.
Some quotes from “Rights Come to Mind“:
“Families face a pervasive nihilism with practitioners assuming a static notion of brain injury. Despite stunning scientific evidence to the contrary, the prevailing view in the clinic is that all brain injuries are immutable. From this perspective, it is preordained that the injured brain cannot recover and that the humane course is to pursue palliative care, to let nature take its course.”
“More worrisome have been reports of families urged to turn their loved ones into organ donors before their prognosis is clear.”
“One key barrier is health care financing and how we pay for rehabilitation.”
“(T)o date, these patients have been seen as invariably hopeless or worse, outside the human scope of such legislation as the status quo attests. They remain sociologically – if not legally – outside the regulatory protection of the ADA. The neglect and disregard continues, making the sad point that before this population is deemed worthy of disability rights, society needs to acknowledge even more fundamental rights of citizenship.”
Although there is a very long way to go in securing the rights of persons with severe injuries of consciousness and communication, this book is the first genuinely public description of what has been developing in the research literature for many years. I am glad that I lived long enough to see this first step taken, and I hope some of you who read this will avail yourself of this remarkable literary experience.