Robert Murphy was an anthropology professor at Columbia University for over 30 years, wrote about the effects of his physical disability due to a spinal tumor on the ways people interacted with him. Sometimes he was invisible to other people, other times he was treated like a small child, and most amazingly his students no longer were afraid of him, because as a man in a wheelchair he was no longer the unreachable professor, but someone who had more in common with them.
When Robert Edgerton was preparing to do his work to get a doctorate in anthropology, he decided not to go to the other side of the world to study a group of people who were different, but rather to study people who had moved from an institution for people affected by intellectual disabilities into community-based settings. What he found was that, more than anything else, people affected by disabilities wanted to be seen as just another person, to have no one point at them because of an obvious disability. He titled his book The Cloak of Competence, because people hid their disabilities, their differences, under a cloak of sorts. One man, who could not tell time, work a broken watch and when he needed to know the time, he said “excuse me, my watch is broken. Can you tell me what time it is?” He never had to be embarrassed because he could ask for help because a thing was broken instead of him as a person.
The predominant our culture relative to disabilities is that people are broken. It is in the very word that is used, disability. The word means “it doesn’t work,” or “broken.” Because people affected by disabilities are seen as being less – less able, less visible, less intellectual, less competent – they are prone to being used, abused and coerced when their behavior is considered to be challenging, maladaptive, or concerning for their own health and safety and/or the health and safety of others especially during the Covid-19 pandemic.
In my work as a behaviour support specialist in Australia and elsewhere, I have focused on how to invite rather than force or coerce behaviour change. I recently saw a video of a 17-year-old man in the state of Kansas who died during a restraint that lasted approximately 30 minutes. His foster-father had called for assistance as the young man was hallucinating at home and needed help. The ambulance crew restrained him while also ensuring his safety, and then took him to a juvenile detention center instead of a hospital, even though he broke no laws. The young man appeared disoriented and was behaving, in the words of staff, oddly. At one point, one of the staff quickly took the young man’s jacket away from a chair in which he had put it, and when the young man tried to get it back, things escalated, and he died.
The root of the issue, in my opinion, is the coercive nature of our human service system. Despite decades of research, hundreds of articles and conference presentations on the subject of reductions in the use of coercive, restrictive practices, the data indicates that the use of such practices has not significantly decreased and in some cases has actually increased.
In Australia, the National Disability Insurance Scheme (NDIS) supports approximately 484,000 people with disabilities. In a 12 month period from July 2020 through June 2021, the use of restraints increased by 240% over the previous year.
In the England, the use of restraint increased from 22,000 reports in 2017 to 38,000 reports in 2019.
The United States does not have a centralized system for monitoring the use of restraint, seclusion and other coercive practices. Individual states such as Wisconsin, Texas, Illinois and Maryland have noted increases in the use of coercive practices similar to Australia and England.
It is disheartening to me, after spending almost 40 years teaching how to not restraint people, that restraints are actually increasing. We need a new model, a new way of thinking, about what we do. The book Allies in Emancipation is out of print. It was published in Australia, and it is my hope that everyone who reads this blog will contact their universities or organisations and ask how to get this book published again. The editors, Patricia O’Brien from Australia and Martin Sullivan from New Zealand, have since retired but surely there is a way to get this book back in circulation.
In my own words, this book is about how to stop fitting people into the services offered by the human service system and instead designing individualized supports that can emancipate people from a service system and provide with structured supports that can better improve the quality of their lives. Do everything you can to get this book!
Bob Bowen