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What Works for Self Advocate
Leaders - my research so far
Aaron Johannes, M.A.(Integrated Studies)
PhD Candidate, Taos Ins...
Thanks!
• To lots of people (about 300!), but in
particular
– Barb Goode
– Ben Simcoe
– Bryce Schaufelberger
– Gerry Juzen...
Why Does Leadership Matter for
People with Intellectual Disabilities?
Effective Leaders with I.D. Exist
Research on Disability in Context
Checking Up On the DES – An investigation into implementation of
Annual Health Checks for people with learning disabilitie...
“How do you feel about your day
program?”
What works for Self Advocate Leaders?
• How do they get from the
back of the room when
they are unexpected?
• How do they ...
Research Questions
• Primary research question.
“Leadership means to take action. What are some stories
about what has bee...
Douglas College
Research Ethics Board Approval
Barb and Liz
From the start, a natural tendency to
research
Collaborative Curriculum
Using graphic recordings, we documented
informal open ended “community
conversations” with about 300 people during 8
event...
A profound understanding of the
importance of “un-tamed” stories
Sorting and Analysis
We could not move on until we told
and debriefed the story of the LMCBSS
Meta-Circle of Leaders: Six Themes
1. Leading “in a circle” as opposed to “old style” front of
the room leadership.
2. Sto...
Meta-Circle of Self Advocate Leaders
detail
Meta Circle of Leaders
“I did a disability pride parade
with over 5000 people and we
had a banner about my business
and I ...
A continuum of multiple entries and
exits
A continuum of multiple entries and
exits; intentionality and interest
What happens if…
• We ask people what questions interest them?
• We share facilitation? We allow for differences in
commun...
What happens if our colleagues insist that
things should always also be “fun”?
If the adventure goes in different
directions…
If the adventure goes in different
directions…
If you watch John Travolta on YouTube
you will always have something
perfect to say
What Works for Self Advocate Leaders; Research Update
What Works for Self Advocate Leaders; Research Update
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What Works for Self Advocate Leaders; Research Update

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Parts 2 & 3 of my research project, which both involved focus groups of self advocates and co-facilitators

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What Works for Self Advocate Leaders; Research Update

  1. 1. What Works for Self Advocate Leaders - my research so far Aaron Johannes, M.A.(Integrated Studies) PhD Candidate, Taos Institute/Vrije Universiteit Brussel Disability and Community Studies Department Douglas College Director, Spectrum Society
  2. 2. Thanks! • To lots of people (about 300!), but in particular – Barb Goode – Ben Simcoe – Bryce Schaufelberger – Gerry Juzenas – Gordon Fletcher – Liz Etmanksi – Lorrie and Dave Sherritt
  3. 3. Why Does Leadership Matter for People with Intellectual Disabilities?
  4. 4. Effective Leaders with I.D. Exist
  5. 5. Research on Disability in Context
  6. 6. Checking Up On the DES – An investigation into implementation of Annual Health Checks for people with learning disabilities in Oxfordshire. Jan Walmsley Associates Ltd with My Life My Choice
  7. 7. “How do you feel about your day program?”
  8. 8. What works for Self Advocate Leaders? • How do they get from the back of the room when they are unexpected? • How do they become effective, charismatic, articulate leaders? • What supports them to lead? To be effective? • To grow their skills and influence? Advisory group: Our leadership might be different than what you expect. It might be about our lives, our groups and our communities. We can tell you stories about what’s worked for us, but we want to know how you will bring this information back to the self advocate network.
  9. 9. Research Questions • Primary research question. “Leadership means to take action. What are some stories about what has been satisfying or successful for you as a leader taking action in: A. Your life B. Groups you belong to C. Your community?” • Secondary research questions. - the history of the now defunct Lower Mainland Community Based Services Society (kept coming up: what happened?) - the idea of voice and segregation in self advocate narratives. (untamed stories)
  10. 10. Douglas College Research Ethics Board Approval
  11. 11. Barb and Liz
  12. 12. From the start, a natural tendency to research
  13. 13. Collaborative Curriculum
  14. 14. Using graphic recordings, we documented informal open ended “community conversations” with about 300 people during 8 events, from Portland to Prince George, from Chicago to Victoria Portland Oregon, TASH Conference “Celebrating 40 Years of Progressive Leadership”
  15. 15. A profound understanding of the importance of “un-tamed” stories
  16. 16. Sorting and Analysis
  17. 17. We could not move on until we told and debriefed the story of the LMCBSS
  18. 18. Meta-Circle of Leaders: Six Themes 1. Leading “in a circle” as opposed to “old style” front of the room leadership. 2. Story-telling as a leadership tool. 3. Leadership as a relational activity. 4. Leadership as rhizomatic rather than sequential – not laddering from self-management to leading others. 5. Effectiveness of accommodations and communication supports to support leadership. 6. Self advocate driven research and inclusive adult education support inclusion.
  19. 19. Meta-Circle of Self Advocate Leaders
  20. 20. detail
  21. 21. Meta Circle of Leaders “I did a disability pride parade with over 5000 people and we had a banner about my business and I was waving at people - we started at Union Square and we ended at Madison Square park. Waving at everyone was one of the most amazing things I’ve experienced. I’m just so proud of who I am.” “[Then] I had a microphone in my hands and I was oh my goodness I was so surprised – I had become part of a story.”
  22. 22. A continuum of multiple entries and exits
  23. 23. A continuum of multiple entries and exits; intentionality and interest
  24. 24. What happens if… • We ask people what questions interest them? • We share facilitation? We allow for differences in communication? • We see research as a mutually enriching process - if the “future forming” is now? “. . . we enter a new territory of understanding, one in which the vision of research is radically altered. We replace the captivating gaze on the world as it is with value based explorations into what it could be. This conception of a future forming orientation to research opens the way to new aims, practices, and reflections.” “From Mirroring to World-Making: Research as Future Forming,” Kenneth J. Gergen
  25. 25. What happens if our colleagues insist that things should always also be “fun”?
  26. 26. If the adventure goes in different directions…
  27. 27. If the adventure goes in different directions…
  28. 28. If you watch John Travolta on YouTube you will always have something perfect to say

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