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Lying Awake at Night: the Long Haul

by David Wetherow


Debbie 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 together'.

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 we're gone?'

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 ! CommunityWorks

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