APSE Talks: Why do we seek inclusion through exclusion? Keenan Wellar from LiveWorkPlay at the APSE National Conference 2014
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At a time when most every government and agency involved in supporting people with intellectual and developmental disabilities agrees that their goal is to support social inclusion and a full life in the community, why in practice does the sector continue to invest so heavily in systemic and programmatic infrastructure and practices? Although most jurisdictions have adopted at the very least the language of "person-centred planning" are individuals and families really being provided a valid opportunity to pursue a supported choice of community-based living, employment, and socio-recreational outcomes? This session will explore the disconnect between modern sector language of inclusion and community wand the contradictory ongoing investment in medical models of service and outputs. It is intended to provoke cognitive dissonance with respect to fundamental realities of how we invest in the sector and the non-inclusive results we are producing, in light of our stated purpose and values to the contrary.
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APSE Talks: Why do we seek inclusion through exclusion? Keenan Wellar from LiveWorkPlay at the APSE National Conference 2014
- 1. INCLUDE • to make/welcome someone as a part of a group, community, or society EXCLUDE • to prevent or restrict someone from participation or consideration as a part of a group, community, or society
- 2. WHY a charitable organization for people with intellectual disabilities???
- 4. So why should people with intellectual disabilities… All live together? All work together? All play together? (Adapted from hope-house.org)
- 5. If you have an intellectual disability, it’s not such a good thing to be "SPECIAL" SPECIAL PEOPLE Stigmatized. Pitiable. SPECIAL PROGRAMS Limited. Dream-Crushing. SPECIAL PLACES Isolated. Segregated.
- 6. VISION: A COMMUNITY WHERE EVERYONE BELONGS. MISSION: HELPING OUR COMMUNITY WELCOME PEOPLE WITH INTELLECTUAL DISABILITIES TO LIVE, WORK, AND PLAY AS VALUED CITIZENS. CORE VALUE: PEOPLE WITH INTELLECTUAL DISABILITIES ARE VALUABLE CONTRIBUTORS TO THE DIVERSITY OF OUR COMMUNITY AND TO THE HUMAN FAMILY.
- 11. Thank you for choosing Acme Support Services, where we proudly facilitate inclusion and individual independence through person-centered planning! Getting It Wrong Starts With The Core Dishonesty Called “Planning” Now, let me start by reviewing the list of fixed choices available to you!
- 12. INCLUDE • to make/welcome someone (as a) part of a group, community, or society EXCLUDE • to prevent or restrict someone from participation or consideration as a part of a group, community, or society
Notes de l'éditeur
- 1.What we have learned is that often in our field innovative most often leads to another form of taking special people and developing another special program or special place which just increases the gap and does not lead to a fuller more diverse community. Sure there were positive things that happened and the outcomes could be summarized as follows: people attending this innovative program were busy, got out of the house everyday, and usually got some form of social interaction (but not always positive), and there was “choice” or what we now understand -the illusion of choice- you see one of the reasons our program was thought to be innovative was the members planned and chose what sessions would be offered at the day program. There were some changes in positive emotions among participants, but also a lot of interventions required to stop world war three erupting, over time engagement in day program activities decreased, once people had tried out all sessions and there was no more innovative ideas (and we thought we have lots of ideas- from the ordinary to the creative- cooking, photography, singing, drama, current events, consumer affairs, sexuality, self-esteem, out and about, fitness, computers, things to do, volunteer work, and started a few social enterprises: a lunch run and delivery service, community cafe, woodshop and thrift store.... But of course looking back now how could we compete with what can be done in the community- full of opportunity and not a lot of limits. Which leads us to opportunities to experience and develop relationships- sure people hung out when they were at the program, but there were very limited relationships that continued outside the program – two reasons – because they did not like each other and or two- cause they did not have support to initiative, develop and maintain reciprocal relationships, in terms of helping people lead a meaningful life, we never asked, but heard a lot of dreams that were going unrealized, and accomplishment... Sure there were accomplishments but not the accomplishments that many people wanted or valued. They were hungry to be a part of the community on the inside, not on the outside to move out like their brother or sister, to have a job, to contribute to the community.. To have power in their own lives, a life that they determined...- so all of these resources were going into maintaining not so very good outcomes for people supported ---we thought we could do better and realized that The path to inclusion is not through exclusion- special people, special places and special programs do not lead to social inclusion they lead to continued exclusion.
- So what is our current investment delivering? Most of the time, in my opinion, these “special” results. What are the facts? Mostly we don’t know, because as a field and as a system, what we mostly measure is how many people for how many hours at what cost. We aren’t measuring results in terms of whether or not we are helping deliver for people an included life in the community.
- Show of hands if this is at least reasonable aligned with the vision mission values where you work or volunteer or receive services. Now a show of hands if you feel what the organization actually does – the outcomes and impact of that work – actually achieves and demonstrates results consistent with these statements. Now a show of hands if you think that our field as a whole can claim to delivering results consistent with these statements.
- Although we don’t have much data to work with since very few jurisdictions or even individual organizations are measuring their impact in terms of whether or not they actual deliver inclusive outcomes, my own best guess from reviewing the research and asking questions with leaders in the field throughout Canada and the United States, is that we are at about 80-20. It’s not that we don’t need systems or systems-oriented places. The point is that historical assumptions about people with intellectual disabilities continue to have the impact of grooming them for a life in systems, instead of operating on the assumption that they will live an extraordinary ordinary life like the rest of us. I’ll get back to what I mean by extraorindary ordinary life. A very rough way of thinking about it is that we need to reverse these numbers.
- “The family has been told that he needs constant care but there are no systems resources available to meet his needs”
- The point is not that if Matt never walked or talked or got a job he wouldn’t have value, the point is that the people and places that are supposed to be helping people live an included life in the community should not be the same people who are lowering the bar as regards what their future might hold. Our jobs should be about possibilities and opportunities.
- Not saying there’s a problem with friends or teammates who also have a disability and the same types of disability labels, just saying that this should not be the only choice or the only assumption (special needs bowling story).
- Another way of looking at the “limits” issue. Who is lowering the bar? Hypocrisy: funded for failure of excluding people.