John O’Brien has been at the forefront of radical thought about how best to support and liberate people with learning disabilities since the 1970s. In 1987 he conceived the idea of the ‘five accomplishments’ – choice, competence, respect, community presence and community participation, vital to human experience, but often missing from the lives of people with learning disabilities. Yet even those who have known of John and his work for five decades might struggle to know exactly how to describe him. Is he a consultant or an advisor, a teacher or a guide, or perhaps even a guru? In our exclusive interview Seán Kelly finds out how John O’Brien describes himself, and why.
When we spoke recently John O’Brien described himself simply as “an itinerant curious person”. He finds places where something good is happening and then tells others about it so it can be replicated. He claims little or no credit for himself. In fact, to hear him tell it you would think he has just been having a good time with his friends.
After 50 years of work it seemed like a good time to take stock with him but it seems I am a just a little early… “Well, it’s 49 years actually, 50 in 2018”.
John says he first came to this work by accident. “The accident was the Vietnam War and my resistance to it”. John had refused the draft. The Federal Court then required him to work in an institution for 3,000 people. He says the ward he worked on had many of the same hallmarks as the ward in One Flew Over the Cuckoo’s Nest. The staff had lost sight of their connection to their fellow humans and were reduced to simply supervising and controlling people. Some of the inmates were violent and staff had developed the use of fear as a form of control. “So,” he says with typical understatement, “that seemed like a situation that would be worth some attention”. It was the start of his life’s work.
Sticky power
In the early seventies, inspired by therapeutic communities, John and his colleagues moved with people from the institution into a group home. However, he quickly found that the staff reproduced much of the institutional setting in the new home. “It was an opportunity to see how sticky that power over relationship is and how easy it is to recreate it”.
For about a dozen years John felt that maybe he could do some good by climbing up the bureaucratic ladder. “I did that with modest success and was part of the team of people that created a whole range of community supports for people”. What could go wrong? “Politics changed. We got fired by people who were enthusiastic about the construction of new facilities where we were not”.
So John became itinerant and curious. “What I’ve done ever since is try to discover people who are working to create better lives, and communities that work just a little bit better, and seeing if I can find ways to learn from them and be of some help to them”.
Over many years he has developed a wide range of relationships and it is these links which continue to draw him and his partner, Connie Lyle O’Brien, into the work. They have worked at every level, from individual people’s situations to involvement with state and national policies. “There’s nothing particularly organised, and certainly nothing commercial, about the way this works. People call up and say they have gotten themselves into something”. A mess? I suggest. He smiles. “Sometimes it’s under the banner of a great opportunity, sometimes it’s a mess. If we can be of some assistance we show up and see what we can learn”.
Mechanistic mind-set
Meanwhile, John is concerned that services are increasingly developing a mechanistic mind-set. He describes how the largest funder of services in the US has decreed that everyone will have a person-centred plan. In times of short funding this becomes: “Can’t you figure out how to do a person-centred plan in 45 minutes?”. It is seen as a technical problem to be solved with video and online courses.“Nobody thinks that that’s sufficient but some organisations have kind of got stuck on that”. John says it is essential that staff have time to develop real skills and, as he puts it, “get a chance to figure out what the hell I am doing here and what’s possible in this relationship that I have entered”.
He does accept that sometimes tough action has to be taken. As a ‘so-called manager’ (“because that was something I had no gift for whatsoever”) he says he dismissed a whole bunch of staff. “Some people are incapable of the kind of relationship that’s necessary, at least at this point in their lives”.
He has become increasingly interested in ‘social labs’ for staff development. He mentions a recent event where staff from 12 organisations came together in New York State to talk about individualised support “for people who scare us basically”. John and colleagues provided some support (“information and stuff”) but mostly it was an opportunity for people to work out what they were doing. John links this to the action-learning sets that David Towell and others have been leading in the UK for 30 year or more.
John is famous for telling people’s stories. I ask him how he got so good at it? “Probably the good fortune of growing up in an Irish-American family that valued … bullshit”. We both laugh. He says that narrative is really important as a means of understanding and that it can be used to reframe destructive storylines. “That is what person-centred planning is,” he says, “an occasion for people to notice what story they are in at the moment and see whether there’s some desire for a different story or for their story to develop in a particular direction.”
I ask John whether he thinks things are currently moving forwards or backwards? He says that in some ways we have moved incredibly far forward as the ingenuity and courage of people with disabilities and their families and allies has resulted in amazing things. He says a person with Down’s syndrome used to be seen as “the shop-floor prototype of a profoundly impaired person. In US institutions their life expectancy used to be 18-20 years. Now people with Down’s syndrome have turned into the example of the sunny side of our work. They’re on TV, they’re making movies … some guy in England has just graduated. That’s quite amazing. So obviously we are moving forward”.
But then he expresses the concern that many of us feel, that widespread pregnancy-screening and terminations mean that “somewhere between 60% and 90% of the possible people with Down’s syndrome don’t get to be whole people out in the world”.
Valued roles
He says he is astonished by the number of ways that people with intellectual and developmental disabilities have managed to create valued roles for themselves outside the mainstream world, and by the way that campaigners have managed to make intellectual disability a public issue. “The convention on the rights of persons with disabilities is largely the achievement of people with disabilities and their allies”.
John also pays tribute to the Special Olympics. He says it began as “a special thing with weird connotations” but that half a million people are now involved in sport with non-disabled people. Many of the people he meets say, “Special Olympics, that’s what got me started, that’s what gave me confidence”. Yet he feels that social movement is “sluggish” at present and he is not sure where the next openings for real progress will be. He is also very concerned that too often, in the US at least, people are “drugged into stupor, often in their own homes and on an individual basis”.
So it is a tremendously mixed situation, but the solution he says is not simply more money. In fact, he describes the relationship to money as “ambiguous” and mentions one US state where it is very difficult to innovate and yet that state “spends far and away the most money on people with developmental disabilities” but “every dollar now comes with a greater load of regulation and requirement and accountability and paperwork and so on”.
I ask John about any heroes he has met along the way or people who have influenced him. His first tribute is to the people who were incarcerated on the hospital wards all those years ago. He and his colleagues were just “minimally competent” at supporting people he says, “and what astonished me was their capacity for growth and their capacity for forgiveness.”
An early influence was Burton Blatt at Syracuse University. Blatt put his career on the line when he produced a powerful book called Christmas in Purgatory which John says “blew the lid off what was going on in the back wards of the institutions in the United States”. John says he was lucky enough to live near Blatt and through him he got to work with Wolf Wolfensberger in 1969 “which made a great deal of difference to my way of understanding things”. However, John is keen to stress that “family members and people with disabilities are my main heroes.”
He recently wrote a book with Beth Mount called People with Developmental Disabilities And Their Allies Building Communities That Work Better For Everybody. In the book John and Beth describe people with developmental disabilities who have become Pathfinders – “courageous and creative people with disabilities who have remade the world for others with developmental disabilities”. John does acknowledge that this is a fairly tall order when austerity funding is “putting your capacity to get your trousers on in the morning at risk” but it remains an inspirational vision.
As we draw to a close I ask John if there is anything else he wants to add? “No,” he says “… I’ve probably said too much already”. Finally I am able to disagree with him wholeheartedly!
