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What Works for Self Advocate Leaders; Research Update
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
Director, Spectrum Society
• To lots of people (about 300!), but in
– Barb Goode
– Ben Simcoe
– Bryce Schaufelberger
– Gerry Juzenas
– Gordon Fletcher
– Liz Etmanksi
– Lorrie and Dave Sherritt
Why Does Leadership Matter for
People with Intellectual Disabilities?
What works for Self Advocate Leaders?
• How do they get from the
back of the room when
they are unexpected?
• How do they become
• What supports them to
lead? To be effective?
• To grow their skills and
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
• 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:
- the idea of voice and segregation in self advocate
narratives. (untamed stories)
Research Ethics Board Approval
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”
A profound understanding of the
importance of “un-tamed” stories
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. 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.
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.”
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
• 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
What happens if our colleagues insist that
things should always also be “fun”?
If the adventure goes in different
If the adventure goes in different
If you watch John Travolta on YouTube
you will always have something
perfect to say