Lying Awake at Night: the
wrote to the Inclusion list: I completely understand your concerns
for your child's future once you are gone. When you have a child with a
disability, all your dreams for this child living a typical future of
independence, getting married, having children, being employed, etc
become very fuzzy. Not only that, now your future as a parent becomes
extended. Dreams of retiring and spending your golden years with your
spouse, maybe traveling, enjoying your freedom from certain obligations
no longer looks feasible. These issues are rarely dealt with until you
are in the middle of it because we are so busy dealing with the ones
that haunt us now.
Hi, Dave here from BC... About 25 years
ago, people began working away at the question of what would help
families with the 'long haul', sleepless-night, 'once-we-are-gone'
questions. The easy answers came and went, and as so often happens, the
genuine answers came through a long process of experiment, collaboration
and dialogue - many different people, families, and communities working
on the question from different perspectives.
About that time, Judith Snow, Jack
Pearpoint and Marsha Forest (http://www.inclusion.com),
Peter Dill, Doris Fillmore and Allan McWhorter and others, invented the
Joshua Committee - one of the first self-aware 'circles of support'. And
then they did something else that was important - they began writing
about it, and the idea spread.
Because Judith and her friends took the
time to share what they were learning, when my niece was born with
Apert's Syndrome, I had the language I needed when I met with my brother
and his wife. I knew that the one thing that would have the most impact
on the quality of Alison's life would be whether or not she was
surrounded by people who knew her, who loved her, who weren't afraid to
touch her or be touched by her, who knew that she would be part of their
lives, and they would be part of her life for the long haul.
What we were beginning to learn was
that the 'long haul' answers had to be imbedded in personal
relationships, rather than 'systems' relationships. We weren't
repudiating formal supports, but we knew that the foundation had
to be personal. A few years later, Aldred Neufeldt and Dean Bartel
articulated the idea of Supportive Care in the Congregation - a
variation on Judith's 'Joshua Committee' with the family's church
congregation as the organizing element.
John McKnight, Judith and many others
began adding the idea of gifts and contributions to this emerging
'pattern language' (remember, when all of this started, people weren't
talking about 'gifts'). People began working on creative options for
family support, shared living, cooperative housing, microboards, etc. -
all anchored in the idea of what Judith calls 'calling the circle
Jack, Marsha and John O'Brien created
PATH and other powerful tools for community-building and
commitment-building. Al Etmanski, Vicki Cammack and Jack Collins
understood the value of building personal support networks, and
incorporated tools for wills and estates planning, alternatives to
guardianship, and supported decision-making into PLAN. They wrote A Good
Life, a great guidebook for families (at http://www.agoodlife.org)
that helps people create their own answers to 'what will happen after
Wolf, Gunnar and Rosemary, Jean Vanier,
and many more have all contributed to this growing understanding. We
honour our teachers, those who are well known, and those who are not so
well known. The brave explorers on this list. The people who keep
working away at the questions that keep us awake at night. Because of
them, we know what to do. And Marsha, today we honour you with our
tears. Visit http://www.inclusion.com/Marsha.Memorium.html,
and scroll down. Don't miss the pictures.
© 2003 David and Faye Wetherow !