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Aaron Johannes & Liz Etmanski
TASH, Atlanta, 2017
Background
• 30 years in many different roles.
• 15 years into career found and began supporting self
advocate leaders and...
The social problem identified
• People with intellectual disabilities (ID) are often discounted
as leaders.
– Not included...
What did people with disabilities want
to know?
What has worked for the widest cross-section of
people labeled as having I...
Prioritizing accessible results:
graphics, plain language, dialogues.
Graphic facilitator:
Avril Orloff
Co-created research question
“If leadership means to
take action, what are
some stories about what
has been satisfying or
...
Co-created research question
“If leadership means to
take action, what are
some stories about what
has been satisfying or
...
. . . as leaders in their
lives, groups they are part
of and in their
communities.
Collaborative / Inclusive / Participatory
Research
A collaborative research framework “refers to
partnerships or collabora...
Collaborative / Inclusive / Participatory Research
Similarly, social constructionist research
prioritizes the relationship...
Aaron Liz
“the greater the distance between direct experience and its
interpretation, then the more likely resulting knowl...
The social problem, expanding…
• People with intellectual disabilities (ID) are often
discounted as leaders.
– Not include...
Parts of the dissertation
Chapter One: Introduction “alternative frameworks of sense.”
Chapter Two: “Ongoing voices of iso...
“When one thinks of
the leader as a
storyteller whose newly
fashioned stories must
wrestle with those that
are already ope...
“owning” one’s story
“A sad and all too common truth for
people who experience developmental
disabilities is that little, ...
Some stories
• EDUCATION: “Sharing a story is key. I shared a story about our book
club at a conference [of librarians], a...
Misused, misrepresented,
misunderstood, mistaken…
“Stories about us are . . . one-dimensional
narratives of tragic loss an...
Old models of leadership
vs new models
“Who invented this thing called leadership and decided that only some
people could ...
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 jo...
Karsten, [36 models from 1969 to
2012] Participation Models
“For this not to be the case you must
walk through the door th...
Modified Clarity Model
W.H.Drath et all: “Direction, alignment, commitment:
Towards a more integrative ontology of leadership”
Traditional ontolo...
Findings
• 2 or more self advocates
in a group
• “Lean in” to opportunity
(rhizomatic)
• “leading in a circle”
• No one le...
Challenges?
Role playing – from a rat to a nun to a social worker to a support worker on his cell phone
gifts
What we found out in the existing
research…
• i.e. “Two self advocate leaders is more effective than one”?
Yes.
• i.e. lea...
What we found out in community
conversations
• Story-telling
• Leadership at all levels
• Accommodations = inconsistent pr...
What we found out from the meta-
circle of self advocate leaders
• Leadership defined by effectiveness: “to take
action.”
...
“Who invented this thing called leadership
and decided that only some people could
be leaders, anyway? Why are we not all
...
“One of the core competencies of the
status quo is its ability to withstand
disruptive solutions and criticisms. To
enshro...
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 ...
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 magici...
Thanks to the dissertation committee
and much gratitude to my supervisors
…to my collaborators, and to my family
• Barb
• Liz
• Bryce
• Gordon
• Ben
• Lorie
• Dave
• Jerry
• Gerry
• The late Arnol...
References
Barnes, C. (2002). ’Emancipatory disability research’: Project or process? Journal of Research in Special Educa...
What Works: Stories of successful leadership in the lives, groups and communities of people with intellectual disabilities...
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What Works: Stories of successful leadership in the lives, groups and communities of people with intellectual disabilities. Presentation, TASH, 2017, Atlanta.

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

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What Works: Stories of successful leadership in the lives, groups and communities of people with intellectual disabilities. Presentation, TASH, 2017, Atlanta.

  1. 1. Aaron Johannes & Liz Etmanski TASH, Atlanta, 2017
  2. 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. 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. 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. 5. Prioritizing accessible results: graphics, plain language, dialogues. Graphic facilitator: Avril Orloff
  6. 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. 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. 8. . . . as leaders in their lives, groups they are part of and in their communities.
  9. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 21. Modified Clarity Model
  22. 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. 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. 24. Challenges? Role playing – from a rat to a nun to a social worker to a support worker on his cell phone
  25. 25. gifts
  26. 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. 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. 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. 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. 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. 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. 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. 33. Thanks to the dissertation committee and much gratitude to my supervisors
  34. 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. 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 /cjds.v5i3.29 Pitonyak, D. (n.d.). Who Holds Your Story? Retrieved from http://www.dimagine.com/WhoHoldsYourStory.pdf Titchkosky, T. (2011). The question of access: Disability, space, meaning. Toronto, Canada: University of Toronto Press.

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