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INTERVIEW

and others have been leading in the UK Many of the people he meets say,
for 30 year or more. “Special Olympics, that’s what got me
started, that’s what gave me confidence”.
John is famous for telling people’s Yet he feels that social movement is
stories. I ask him how he got so good “sluggish” at present and he is not sure
at it? “Probably the good fortune of where the next openings for real
growing up in an Irish-American family progress will be. He is also very
that valued … bullshit”. We both laugh. concerned that too often, in the US at
He says that narrative is really important least, people are “drugged into stupor,
as a means of understanding and that often in their own homes and on an
it can be used to reframe destructive individual basis”.
storylines. “That is what person-centred
planning is,” he says, “an occasion for So it is a tremendously mixed situation,
people to notice what story they are in but the solution he says is not simply
at the moment and see whether there’s more money. In fact, he describes the
some desire for a different story or relationship to money as “ambiguous”
for their story to develop in a and mentions one US state where it is
particular direction.” very difficult to innovate and yet that
state “spends far and away the most
I ask John whether he thinks things are money on people with developmental
currently moving forwards or backwards? disabilities” but “every dollar now comes
He says that in some ways we have with a greater load of regulation and
moved incredibly far forward as the requirement and accountability and John became itinerant
ingenuity and courage of people with paperwork and so on”.
disabilities and their families and allies and curious.
has resulted in amazing things. He says I ask John about any heroes he has
a person with Down’s syndrome used met along the way or people who have What I’ve done
ever since is try to
to be seen as “the shop-floor prototype influenced him. His first tribute is to the “
of a profoundly impaired person. In US people who were incarcerated on the discover people who are
institutions their life expectancy used to hospital wards all those years ago.
be 18-20 years. Now people with Down’s He and his colleagues were just working to create better
syndrome have turned into the example “minimally competent” at supporting lives, and communities
of the sunny side of our work. people he says, “and what astonished
They’re on TV, they’re making movies… me was their capacity for growth and that work just a little
some guy in England has just graduated. their capacity for forgiveness.” bit better, and seeing if
That’s quite amazing. So obviously we I can find ways to learn
are moving forward”.
from them and be of
But then he expresses the concern that some help to them. ”
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 He recently wrote a book with Beth
people out in the world”. Mount called People with Developmental
Disabilities And Their Allies Building
VALUED ROLES Communities That Work Better For
He says he is astonished by the number Everybody. In the book John and Beth
of ways that people with intellectual and An early influence was Burton Blatt at describe people with developmental
developmental disabilities have managed Syracuse University. Blatt put his disabilities who have become Pathfinders
to create valued roles for themselves career on the line when he produced a – “courageous and creative people
outside the mainstream world, and by the powerful book called Christmas in with disabilities who have remade the
way that campaigners have managed to Purgatory which John says “blew the lid world for others with developmental
make intellectual disability a public off what was going on in the back wards disabilities”. John does acknowledge that
issue. “The convention on the rights of of the institutions in the United States”. this is a fairly tall order when austerity
persons with disabilities is largely the John says he was lucky enough to funding is “putting your capacity to get
achievement of people with live near Blatt and through him he your trousers on in the morning at risk”
disabilities and their allies”. got to work with Wolf Wolfensberger in but it remains an inspirational vision.
1969 “which made a great deal of
John also pays tribute to the Special difference to my way of understanding As we draw to a close I ask John
Olympics. He says it began as “a special things”. However, John is keen to if there is anything else he wants to add?
thing with weird connotations” but that stress that “family members and “No,” he says “… I’ve probably said too
half a million people are now involved in people with disabilities are my much already”. Finally I am able to
sport with non-disabled people. main heroes.” disagree with him wholeheartedly!

www.cl-initiatives.co.uk Community Living Vol 31 No 1 | Autumn 2017 27