This presentation tells the story of a collaborative research project done for my dissertation in 2017.

1. Aaron Johannes & Liz Etmanski
TASH, Atlanta, 2017

2. Background
• 30 years in many different roles.
• 15 years into career found and began supporting self
advocate leaders and groups.
• Last several years co-facilitating with people with ID
within a social enterprise.
CURIOUSITY:
How do people denied so many educational and life
opportunities acquire the skills to speak at a podium,
participate at a table of government leaders, or imagine
and present innovative projects to potential funders?

3. The social problem identified
• People with intellectual disabilities (ID) are often discounted
as leaders.
– Not included in decision making about what
affects them,
– Included but tokenised,
– Successfully participate but oddly unacknowledged.
• Yet people with ID lead brilliantly in many events, sites, groups
and organizations and have done so for decades.
• People with ID were also mystified and excited to think about
discovering how they were leaders
“My aunt lived
in an
institution!”

4. What did people with disabilities want
to know?
What has worked for the widest cross-section of
people labeled as having ID, in different kinds of
leadership roles and social contexts, so that they
and their allies and services could understand
how to work together more effectively.

5. Prioritizing accessible results:
graphics, plain language, dialogues.
Graphic facilitator:
Avril Orloff

6. Co-created research question
“If leadership means to
take action, what are
some stories about what
has been satisfying or
successful for people with
ID as leaders in their lives,
groups they are part of
and in their communities.”

7. Co-created research question
“If leadership means to
take action, what are
some stories about what
has been satisfying or
successful for people with
ID”

8. . . . as leaders in their
lives, groups they are part
of and in their
communities.

9. Collaborative / Inclusive / Participatory
Research
A collaborative research framework “refers to
partnerships or collaborations in which people with and
without disabilities who work together have both
shared and distinct purposes which are given similar
attention and make contributions that are equally
valued” (Bigby, Frawley, & Ramcharan, 2014).

10. Collaborative / Inclusive / Participatory Research
Similarly, social constructionist research
prioritizes the relationships of researchers
and subjects, using methods focused on
how meaning is co-created (McNamee,
2010). In this research there was a
collaborative four part framework:
• Literature review of academic and
primary documents and sources;
• Story-based focus group
discussions;
• Chronological and thematic
analysis of the data; and
• The iterative return of the research
to the self-advocate community in
accessible forms (Barnes, 2002;
Caldwell, 2013), for further
discussion.

11. Aaron Liz
“the greater the distance between direct experience and its
interpretation, then the more likely resulting knowledge is to be
inaccurate, unreliable and distorted” (Beresford, 2003, p. 4).

12. The social problem, expanding…
• People with intellectual disabilities (ID) are often
discounted as leaders.
– Not included in decision making about what affects
them,
– Included but tokenised,
– Successfully participate but oddly unacknowledged.
• Leadership as a lens clarified the social
conditions of their lives within systems that
make decisions with or without their input.
• The gap between conceptualisations of
persons with ID and leaders: leadership is
“perhaps the least explored and
understood aspect of self-determination
among individuals with disabilities” (Carter
et al., 2011, pp. 57–58).
There is
nothing that
is not
improved by
dancing

13. Parts of the dissertation
Chapter One: Introduction “alternative frameworks of sense.”
Chapter Two: “Ongoing voices of isolation and marginalization of people with
intellectual disabilities supported in different kinds of programs: The ‘cocoon
of impossibility.’”
Chapter Three: “Sensemaking to support leadership through arts infused
person centred and inclusive planning processes.”
Chapter Four: “The Nearly Lost History of the Lower Mainland Community-
Based Services Society: A successful self-advocate initiative.”
Chapter Five: “A Meta-circle of Leaders with Intellectual Disabilities Discuss
What is Helpful in the Leadership of their Lives, the Groups they are Part of
and in their Communities.”
Chapter Six: “Röd tråd: A parallel story of leadership as the discovery of self,
other and history – an autoethnography.”
Chapter Seven: Summary Discussion and Implications of the Integrated
Findings

14. “When one thinks of
the leader as a
storyteller whose newly
fashioned stories must
wrestle with those that
are already operative in
the minds of an
audience, one obtains a
powerful way of
conceptualizing the
work of leading”
(Gardner, 2011, p. xix).

15. “owning” one’s story
“A sad and all too common truth for
people who experience developmental
disabilities is that little, if anything, is known of
their stories. Reams and reams of paperwork
are generated each year, but only a fraction . .
. describes the person’s connection to the
world. The file is instead a collection of things
that the service system wants — a chronicling
of interventions, evaluations, signatures, data
points. There is no unfolding of things in these
files, no character development, no plot. It all
reads like the fine print on a cough medicine
bottle. You won’t find sisters arguing about a
baby gone, or a family dog named Brownie.
There is no river, no shit, no police, no police
car. It is, after all, only paperwork.
“When there are details about the
person’s story (e.g., in the social history
section of the psychological evaluation)
professionals do everything they can to make
sure it is textbook sterile…”

16. Some stories
• EDUCATION: “Sharing a story is key. I shared a story about our book
club at a conference [of librarians], and it was amazing [no one
knew that people with ID could be part of book clubs].”
• ADVOCACY: “I did a story one time about what happened – when I
was made fun of in a restaurant – we didn’t know what a lawyer
was, or what court was – and I won that case; it became a
commercial – I was honored by the person who asked me to tell the
story . . . we hired people to do the acting.”
• BELONGING: “We went to the top of the Empire State building, and
I was looking down . . . and every light was like a story and I was just
excited to be there. Then, the next day I had a microphone in my
hands [at a disability pride event] and I was looking at the audience
and I was oh my goodness I was so surprised – I had become part of
a story.”
• “The stories get you the results.”

17. Misused, misrepresented,
misunderstood, mistaken…
“Stories about us are . . . one-dimensional
narratives of tragic loss and/or progressive
normativity . . . defined by our Otherness, yet
revolve around the normates and the normative.
. . .If we didn’t know us better, we would bore
us.” (Pierre & Peers, 2016, p. 1)

18. Old models of leadership
vs new models
“Who invented this thing called leadership and decided that only some
people could be leaders, anyway? Why are we not all leaders, working
together?
If we talk about this as if it is something just some people do
are we just continuing to add to this belief
that only some of us can be leaders?” (Focus Group Participant)

19. Old models of leadership
vs new models
“I think we can all see that she is a leadership for our future.”
“It is not our job to understand right away, it is our job to listen to someone
until we can understand them.”

20. Karsten, [36 models from 1969 to
2012] Participation Models
“For this not to be the case you must
walk through the door that is now
slightly ajar (thanks to your efforts) and
engage with the very people who you
think are the cause of the problem. Who
you have accused of being privileged and
insensitive. Who you don’t trust and who
you are certain you don’t like. This will be
harder emotional work than you have
ever done before.
“Particularly since most representatives
of the status quo see themselves as
contributors to the solution you are
seeking.”
Etmanski, “What to do when the door to
the status quo opens slightly”

21. Modified Clarity Model

22. W.H.Drath et all: “Direction, alignment, commitment:
Towards a more integrative ontology of leadership”
Traditional ontological
leadership tripod
• Leaders
• Followers
• Shared goals
Proposed essential leadership
outcomes (relational)
• Direction
– Congruent overall aims, goals,
mission
• Alignment
– Organization and coordination
of knowledge and work within
collective
• Commitment
– Willingness of members to
subsume own interests and
benefit for collective good
(Drath et al, 2008, p. 636)

23. Findings
• 2 or more self advocates
in a group
• “Lean in” to opportunity
(rhizomatic)
• “leading in a circle”
• No one left behind / no
one is too difficult
• Relational leadership
• Story telling is perhaps
integral to sub-culture
• History is foundational to
growth
• Resilience
• Importance of consistent
accommodations
• Ambitions for education
and life long learning
• A gift for research
• Fun

24. Challenges?
Role playing – from a rat to a nun to a social worker to a support worker on his cell phone

25. gifts

26. What we found out in the existing
research…
• i.e. “Two self advocate leaders is more effective than one”?
Yes.
• i.e. leadership is like a ladder of increased accountability.
Self-determination -> group leadership -> community
leadership (could be at work). No.
• Story-telling subverted
• A lack of known / acknowledged history
• No consistent tools to determine empowerment in decision
making
• Finances often preclude involvement or require
involvement that is no longer appropriate
• Research models are often not “culturally appropriate”

27. What we found out in community
conversations
• Story-telling
• Leadership at all levels
• Accommodations = inconsistent practices
become consistent expectations
• Not being heard = inconsistent practices
become consistent expectations
• Distrust in processes / leadership

28. What we found out from the meta-
circle of self advocate leaders
• Leadership defined by effectiveness: “to take
action.”
• Leadership is relational
• Leading in a circle; no one gets left behind
• Communication is not an issue, it’s an
expectation
• Poverty (the feeling of poverty) trumps advocacy
(almost all the time)
• A lack of definitions and terms of reference: “Can
I say no to this?”

29. “Who invented this thing called leadership
and decided that only some people could
be leaders, anyway? Why are we not all
leaders, working together? If we talk about
this as if it is something just some people
do are we just continuing to add to this
belief that only some of us can be
leaders?” (Focus Group Participant)

30. “One of the core competencies of the
status quo is its ability to withstand
disruptive solutions and criticisms. To
enshroud them. To round off their sharp
edges. To isolate them. To rationalize
maintaining things the way they are.”
Al Etmanski, “What to do when the door to the status quo
opens slightly”
Medium,https://medium.com/@aletmanski/what-to-do-when-the-door-to-the-status-
quo-opens-slightly-78ace9955cce, Dec 7

31. Viable new ways to lead us into building the kinds of
communities we want to be part of by showing us
what’s already here from their perspective, informed
by their interest in leadership

32. Where we point the lens can be the magic
"My final form is never of my choosing, I only wield the
wand; you are the magician.” Lynn Manning
Christmas in purgatory Lorie Sherritt, President, BC People First, MC of the
demolition of the last Woodland’s Institution building

33. Thanks to the dissertation committee
and much gratitude to my supervisors

34. …to my collaborators, and to my family
• Barb
• Liz
• Bryce
• Gordon
• Ben
• Lorie
• Dave
• Jerry
• Gerry
• The late Arnold
Bennington
& all my mentors
& to…
• Gary
• Zev
• Amanda
• Brenda
• Kirsten
• Ronee
& Christy Van Moors of
VUB

35. References
Barnes, C. (2002). ’Emancipatory disability research’: Project or process? Journal of Research in Special Educational Needs, 2(1),
233–244. doi:10.1111/j.1471-3802.2002.00157.x
Beresford, P. (2003). It’s our lives: A short theory of knowledge, distance and experience. Victoria, Canada: Open Services Project.
Caldwell, K. (2013, June 14). Dyadic interviewing: A technique valuing interdependence in interviews with individuals with
intellectual disabilities. Qualitative Research, 14(4), 488–507. doi:10.1177/1468794113490718
Carter, E. W., Swedeen, B., Walter, M. J., Moss, C. K., & Hsin, C.-T. (2011). Perspectives of young adults with disabilities on
leadership. Career Development for Exceptional Individuals, 34(1), 57–67. doi:10.1177/088572881038741
Drath, W. H., McCauley, C. D., Paulus C. J., Van Velsor, E., O’Conner P. M. G., & McGuire J.B. (2008). Direction, alignment,
commitment: Toward a more integrative ontology of leadership. The Leadership Quarterly, 19, 635-653.
Gardner, H. E. (2011). Leading minds: An anatomy of leadership [Electronic version]. Retrieved from
https://www.amazon.ca/Leading-Minds-Leadership-Howard-Gardner/dp/0465027733
Gergen, K. J. (2015a). From mirroring to world-making: Research as future forming. Journal for the Theory of Social Behaviour,
45(3), 287–310. Retrieved from http://works.swarthmore.edu/cgi/viewcontent.cgi?article=1796&context=fac-psychology
Johannes, A. (2013). People with intellectual disabilities as leaders: Collaboratively identifying strategies for success, using graphic
facilitation (Master’s thesis). Athabasca University, Canada.
Karsten, A. (2011, July). Participation models: Citizens, youth, online: A chase through the maze. Retrieved from
http://www.nonformality.org/participation-models
McNamee, S. (2010). Research as social construction: Transformative inquiry. Saúde & Transformação/Social Health & Social
Change, 1(1), 9–19.
Pierre, J. S., & Peers, D. (2016). Telling ourselves sideways, crooked and crip: An introduction. Canadian Journal of Disability
Studies, 5(3), 1–12. doi:10.15353
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Pitonyak, D. (n.d.). Who Holds Your Story? Retrieved from http://www.dimagine.com/WhoHoldsYourStory.pdf
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