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Reflecting on:
What Works: Self Advocates as
Leaders in their Lives, Groups,
and Communities
Workshop presenters: Aaron Johannes,
Barb Goode and Liz Etmanski
Workshop at
Inclusion B.C. Conference
Keep Moving: Don’t Stop
Friday, May 29, 2015 3:30 – 5:00 PM
background
• Both my Masters (Athabasca MA-IS
program) and my Doctoral
dissertation (Taos Institute in
partnership with VUB – the Free
University of Brussels) are about
people with intellectual disabilities as
leaders.
• My basic research questions are
– How do people lead? In their
lives, groups and communities?
– How can we support their
leaership to increase
opportunities and their leverage?
– Why might we want to?
• This reflection is based on a session
at Inclusion B.C.’s 2015 Conference
Self advocates helped me
figure out the questions of my
thesis and then I met with
folks organized through
LiveWorkPlay – what I’d
planned to capture was a slice
of how leadership works for
self advocates; what I got was
data on how organizational
best practices can support
actual community leadership
as inclusion.
Evidence that what my self
advocate friends and their
allies hope for, can happen.
My dissertation is informed
by different groups coming
together to talk about
leadership. This workshop
with local British Columbian
self advocates at our annual
provincial conference is one
of those. What I wanted to
try this time was supporting
self advocate leaders to host
and record the dialogue.
Barb Goode is a great friend
and has been really
interested in my research so
happily agreed to help out.
Liz Etmanski is another great
friend. We work together as
graphic recorders.
In many ways Liz comes from a
very different place than Barb
(who was a great friend to Liz’s
parents), yet both are wise,
assertive, insightful partners
who make sure I see things
holistically.
Liz was also excited about the
topic and the opportunity to
draw some of my research.
As always, participants were really
interested in Liz’s work as she drew
their conversations
But…
I wasn’t too sure how it would all work out. Part of me really wanted
to control everything. Organize the curriculum, host the dialogue,
draw the conversation to record it. Self advocates could “help.”
But I knew from my own experience and my research that the more
present I was the more I would influence the results, whether I wanted
to or not.
And part of Barb and Liz’s impulse was to hand it all back to me as they
knew it was important to my work and they like and trust me.
However, they were both willing to be brave because they cared about
these ideas and both of them share this sense of honor – having
agreed to do it, they would follow through.
So my role was mainly to assist them in this workshop.
Our Agenda
We built this agenda
together. Barb and Liz
agreed it was important for
self advocates to learn more
about what we know about
leadership and how it works
for self advocates, so I
would first give an overview
of my research and the
different theories about
leadership and folks with
intellectual disabilities.
Our Agenda
Like many participants in these
leadership conversations they
wondered why they don’t know
more about the research that does
exist…
Agencies also wonder where the
useful research is.
The Taos Institute focuses on Social
Constructionism and research that is
participatory and useful. Kenneth
Gergen writes: “This conception of a
future forming orientation to
research opens the wayto new aims,
practices, ethical deliberations, and
reflections.”
Our Agenda
After my overview of research, Barb
would ask three questions she felt
were important, and Liz would
record the conversations. At the end
of the workshop we hoped for an
open-ended conversation with the
whole group about their thoughts
about leadership.
Barb and Liz wanted people to have
an opportunity to just talk. And it all
had to be fun 
Both Barb and Liz wanted to make
sure we were able to stay on track so
we made this poster and gave times
for different parts of our workshop.
My Part…
First, we talked about ethics and research
and everyone agreed that while no
names would be used in any research
coming out of this session, they were
aware that our intention was to
graphically record and use the
conversation we were about to have. Liz
would not write anyone’s names down.
We then went over a brief overview of
the history of the self advocate
movement, and the relationship
between those groups and other kinds of
advocacy and service provision groups,
leading to the recent “Beyond Tokenism”
study in the U.S., the largest of its kind.
I gave an overview of my research and of
other studies of self advocate leadership.
Barb’s Three questions
Barb helped people divide
into small groups and
answer this question:
what is a good story of a
self advocate leader you
know?
Barb’s Three questions
The next question was
about people’s own
experiences of leadership in
their lives, groups they are
part of and in their
communities.
This idea of a spectrum of
leadership was conveyed to
me early on by self advocate
leaders Bryce and Gordon.
To think that “leadership” looks a certain way to
everyone is and idea that comes out of privilege. It
is easy to think so when you have choices about
who you spend time with, where you live and
where you work.
When people have to spend so much time and
energy trying to “lead” their lives by having their
choices respected, it is hard for them to imagine
taking, for example, a political role. Bryce and
Gordon said look longer at a wider range of what
leadership is in someone’s life.
Barb’s Three questions
From the beginning Barb
wanted the research to be
useful, and to be
communicated to
organizations and
communities. It has been
our experience that
people want to involve
self advocates but don’t
know how.
The room was packed… the conference
organizers had already put us in a bigger
room. This has been our consistent
experience.
People want to have this conversation.
Barb began by asking people how we would be together… which
she thinks is important to people who may not have not been in
meetings much and might be hesitant to speak up.
Liz jumped in by scribing a title…
What’s a good story of a self advocate
leader you know?
Many people had
examples of self advocate
leaders they respected…
Politics
One participant wanted to talk
about the politician David Eby,
which led to a great
conversation about how we
can tell when someone is a
leader that we should follow.
He said that his research had
demonstrated that Eby had
supported community
development, considered both
sides of questions, and been
open to meeting and
answering questions.
One sign a of a good
leader was evidence that
they were involved in their
communities….
However, people also
wanted to be sure that not
only the easy communities
or easy populations were
attended to, but the more
marginalised populations
such as the downtown east
side residents.
As in other conversations
their concern was that
everyone was treated
equally.
David Roche, who recently
moved to B.C., has quickly
become a great hero to
the provincial self
advocate movement.
Stories of what helped you
be a leader?
To be treated with respect
To be informed by using
accommodations to prepare for
meetings…
As in other conversations about
this topic, people told stories
about attending meetings they
didn’t understand and feeling
tokenized. They talked about
how they could not depend on
accommodations being
consistently available.
Increased leverage through
connections led to increased
successes…
They discussed how the
people who were successful
leaders were often working
really hard to become so.
“Being more reasonable”
was about the idea of being
appreciative of small wins.
What do you want agencies and
communities to know about
supporting you as a leader?
One idea was to have
leadership courses, with
accomodations, at local
colleges and universities.
Why were there no equal
opportunities for people
with disabilities who
wanted to learn more
sophisticated skills?
Could there be local plans
through B.C.’s community
councils for self advocate
leadership supports?
Plans for consistent
accomodations for inclusion
such as graphic recording.
Plans for increased
participation.
Plans for increasing mastery
leading to leadership of
initiatives.
Organizing and Supporting
Peer Supports
Either within agencies as well
supported self advocate
groups of leaders directing
their actions together, or
within independent self
advocate groups, it was
important for people to have
easy ways to reach out to
peers and give or receive help.
It was particularly important to
find ways to reach out to
youth, and to foster political
involvement.
It was important to have
clear goals and also to
clearly identify what one
didn’t want
It didn’t help…
Even though employment is
a good focus to support
people with disabilities, not
giving them choices over
where to work is not. 18
years of paper shredding, a
hated job, didn’t lead to
leadership but, since
quitting, three years of
working in several places in
community had increased
his leverage.
There is room for all kinds of leaders
Standing together
against inequity
There was an interesting
discussion about “the
glass ceiling” that women
face in their careers – how
can people with
disabilities move forward
without everyone moving
forward?
Negotiating Risks
People were concerned that
often what they wanted to
do was axed before they got
a chance to do it, because
those supporting them
didn’t know how to help
them negotiate risks.
They wanted support to
figure out if a risk was worth
taking, and what they would
need to “take a chance.”
What Helped?
Telling stories helped
The idea of stories, which was something that
Barb and Liz had predicted the importance of,
came up several times – self advocates telling
their stories led to connections and
understanding, which led to changes.
Equally, when they wanted information about
things they were working on as participating
leaders, stories was a way for them to
understand the information they needed to
know.
The Next Chapter Book Club in
which people with disabilities
choose books to share within a
small group that meets in
community spaces and is seen
to be thoughtful readers was a
good example of how people
could be supported to learn
leadership skills in community.
Barb’s autobiography The
Goode Life was an example of
someone who demonstrated
leadership.
Speaking out was
perceived as important,
but it was equally
important to be a good
listener, particularly to
other people with
disabilities and other
minorities.
Love
Liz always includes these
couples kissing in our
graphic recordings.
Sometimes it is two men,
or two women, or a
straight couple. She
wants us all to be thinking
of how important love, in
all its variations, is.
Leadership Handout
Barb wanted to make sure
people had something
useful they could take back
home, from this workshop.
So we made them a one
page “Planning for
Leadership” document and
gave everyone two copies –
one for them to fill out, one
to give to their agency to get
them thinking more about
how people could be
involved in leaderly ways.
90 minutes later… the whole graphic
Results
In terms of what I hoped for, the session was an
excellent way of “listening in” as an ally to an
authentic conversation between self advocate
leaders and those who wanted to be leaders…
It was also transformational for some who attended
– staff, parents and people with disabilities came up
afterwards and talked about being more open to
possibilities.
About half of them stayed to fill out feedback forms
Feedback Overview
What did you like best?
• The self-advocates giving their stories x 4
• Handouts and being surrounded by so many self-
advocates! Encouraging to see the movement alive and
kicking!
• That we got to have a say x 3
• Questions from the self-advocates/ideas about what
works for them, visual depiction of discussions
• It was interesting and fun x 3
• Making some new friends
• Johannes and Barb facilitated very well together
• What did you like least?
– Too much to cover, too many people talking –
needed to moderate this better
– So short! X 4, no time to tell stories
Is there another workshop you would suggest
Inclusion BC organize in the future?
And “Anything else?”
• This was FUN!
• Good class x 2
• The most powerful workshop I attended
• Bring back all the funding for the SAF Caucus. Could this group
come to the Inclusion Powell River?
• My first meet with self-advocates. It brought tears to my eyes as I
sat and listened to the wonderful self-advocates in the room.
Johannes is a brilliant man in his field. Thank you!
• [how does this work for] FASD and other invisible disabilities
• More self-advocate workshops x 2
• How to teach youth to be self advocates
• [How to] Help people get a job
Next… in October, come visit…
Next… or see us in Portland
Come see us at TASH 2015
in Portland Oregon!
http://tash.org
Thanks!
To Inclusion B.C. for hosting our presentation
and being such a support to the idea of self
advocate leadership for so long.
To Spectrum Consulting for sponsoring our
attendance.
To my dissertation advisors Ginny Belden-
Charles (Taos) and Jasmina Sermijn (V.U.B.)
Please let us know if you have any thoughts
about self advocates as leaders in their lives,
groups and communities.
Thank you.

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Reflecting on: What Works: Self Advocates as Leaders in their Lives, Groups, and Communities

  • 1. Reflecting on: What Works: Self Advocates as Leaders in their Lives, Groups, and Communities Workshop presenters: Aaron Johannes, Barb Goode and Liz Etmanski Workshop at Inclusion B.C. Conference Keep Moving: Don’t Stop Friday, May 29, 2015 3:30 – 5:00 PM
  • 2. background • Both my Masters (Athabasca MA-IS program) and my Doctoral dissertation (Taos Institute in partnership with VUB – the Free University of Brussels) are about people with intellectual disabilities as leaders. • My basic research questions are – How do people lead? In their lives, groups and communities? – How can we support their leaership to increase opportunities and their leverage? – Why might we want to? • This reflection is based on a session at Inclusion B.C.’s 2015 Conference
  • 3. Self advocates helped me figure out the questions of my thesis and then I met with folks organized through LiveWorkPlay – what I’d planned to capture was a slice of how leadership works for self advocates; what I got was data on how organizational best practices can support actual community leadership as inclusion. Evidence that what my self advocate friends and their allies hope for, can happen.
  • 4. My dissertation is informed by different groups coming together to talk about leadership. This workshop with local British Columbian self advocates at our annual provincial conference is one of those. What I wanted to try this time was supporting self advocate leaders to host and record the dialogue. Barb Goode is a great friend and has been really interested in my research so happily agreed to help out.
  • 5. Liz Etmanski is another great friend. We work together as graphic recorders. In many ways Liz comes from a very different place than Barb (who was a great friend to Liz’s parents), yet both are wise, assertive, insightful partners who make sure I see things holistically. Liz was also excited about the topic and the opportunity to draw some of my research.
  • 6. As always, participants were really interested in Liz’s work as she drew their conversations
  • 7. But… I wasn’t too sure how it would all work out. Part of me really wanted to control everything. Organize the curriculum, host the dialogue, draw the conversation to record it. Self advocates could “help.” But I knew from my own experience and my research that the more present I was the more I would influence the results, whether I wanted to or not. And part of Barb and Liz’s impulse was to hand it all back to me as they knew it was important to my work and they like and trust me. However, they were both willing to be brave because they cared about these ideas and both of them share this sense of honor – having agreed to do it, they would follow through. So my role was mainly to assist them in this workshop.
  • 8. Our Agenda We built this agenda together. Barb and Liz agreed it was important for self advocates to learn more about what we know about leadership and how it works for self advocates, so I would first give an overview of my research and the different theories about leadership and folks with intellectual disabilities.
  • 9. Our Agenda Like many participants in these leadership conversations they wondered why they don’t know more about the research that does exist… Agencies also wonder where the useful research is. The Taos Institute focuses on Social Constructionism and research that is participatory and useful. Kenneth Gergen writes: “This conception of a future forming orientation to research opens the wayto new aims, practices, ethical deliberations, and reflections.”
  • 10. Our Agenda After my overview of research, Barb would ask three questions she felt were important, and Liz would record the conversations. At the end of the workshop we hoped for an open-ended conversation with the whole group about their thoughts about leadership. Barb and Liz wanted people to have an opportunity to just talk. And it all had to be fun  Both Barb and Liz wanted to make sure we were able to stay on track so we made this poster and gave times for different parts of our workshop.
  • 11. My Part… First, we talked about ethics and research and everyone agreed that while no names would be used in any research coming out of this session, they were aware that our intention was to graphically record and use the conversation we were about to have. Liz would not write anyone’s names down. We then went over a brief overview of the history of the self advocate movement, and the relationship between those groups and other kinds of advocacy and service provision groups, leading to the recent “Beyond Tokenism” study in the U.S., the largest of its kind. I gave an overview of my research and of other studies of self advocate leadership.
  • 12. Barb’s Three questions Barb helped people divide into small groups and answer this question: what is a good story of a self advocate leader you know?
  • 13. Barb’s Three questions The next question was about people’s own experiences of leadership in their lives, groups they are part of and in their communities. This idea of a spectrum of leadership was conveyed to me early on by self advocate leaders Bryce and Gordon.
  • 14. To think that “leadership” looks a certain way to everyone is and idea that comes out of privilege. It is easy to think so when you have choices about who you spend time with, where you live and where you work. When people have to spend so much time and energy trying to “lead” their lives by having their choices respected, it is hard for them to imagine taking, for example, a political role. Bryce and Gordon said look longer at a wider range of what leadership is in someone’s life.
  • 15. Barb’s Three questions From the beginning Barb wanted the research to be useful, and to be communicated to organizations and communities. It has been our experience that people want to involve self advocates but don’t know how.
  • 16. The room was packed… the conference organizers had already put us in a bigger room. This has been our consistent experience. People want to have this conversation.
  • 17. Barb began by asking people how we would be together… which she thinks is important to people who may not have not been in meetings much and might be hesitant to speak up.
  • 18. Liz jumped in by scribing a title…
  • 19. What’s a good story of a self advocate leader you know? Many people had examples of self advocate leaders they respected…
  • 20. Politics One participant wanted to talk about the politician David Eby, which led to a great conversation about how we can tell when someone is a leader that we should follow. He said that his research had demonstrated that Eby had supported community development, considered both sides of questions, and been open to meeting and answering questions.
  • 21. One sign a of a good leader was evidence that they were involved in their communities….
  • 22. However, people also wanted to be sure that not only the easy communities or easy populations were attended to, but the more marginalised populations such as the downtown east side residents. As in other conversations their concern was that everyone was treated equally.
  • 23. David Roche, who recently moved to B.C., has quickly become a great hero to the provincial self advocate movement.
  • 24.
  • 25. Stories of what helped you be a leader? To be treated with respect To be informed by using accommodations to prepare for meetings… As in other conversations about this topic, people told stories about attending meetings they didn’t understand and feeling tokenized. They talked about how they could not depend on accommodations being consistently available.
  • 26. Increased leverage through connections led to increased successes… They discussed how the people who were successful leaders were often working really hard to become so. “Being more reasonable” was about the idea of being appreciative of small wins.
  • 27. What do you want agencies and communities to know about supporting you as a leader? One idea was to have leadership courses, with accomodations, at local colleges and universities. Why were there no equal opportunities for people with disabilities who wanted to learn more sophisticated skills?
  • 28. Could there be local plans through B.C.’s community councils for self advocate leadership supports? Plans for consistent accomodations for inclusion such as graphic recording. Plans for increased participation. Plans for increasing mastery leading to leadership of initiatives.
  • 29. Organizing and Supporting Peer Supports Either within agencies as well supported self advocate groups of leaders directing their actions together, or within independent self advocate groups, it was important for people to have easy ways to reach out to peers and give or receive help. It was particularly important to find ways to reach out to youth, and to foster political involvement.
  • 30. It was important to have clear goals and also to clearly identify what one didn’t want
  • 31. It didn’t help… Even though employment is a good focus to support people with disabilities, not giving them choices over where to work is not. 18 years of paper shredding, a hated job, didn’t lead to leadership but, since quitting, three years of working in several places in community had increased his leverage.
  • 32. There is room for all kinds of leaders
  • 33. Standing together against inequity There was an interesting discussion about “the glass ceiling” that women face in their careers – how can people with disabilities move forward without everyone moving forward?
  • 34. Negotiating Risks People were concerned that often what they wanted to do was axed before they got a chance to do it, because those supporting them didn’t know how to help them negotiate risks. They wanted support to figure out if a risk was worth taking, and what they would need to “take a chance.”
  • 36. The idea of stories, which was something that Barb and Liz had predicted the importance of, came up several times – self advocates telling their stories led to connections and understanding, which led to changes. Equally, when they wanted information about things they were working on as participating leaders, stories was a way for them to understand the information they needed to know.
  • 37. The Next Chapter Book Club in which people with disabilities choose books to share within a small group that meets in community spaces and is seen to be thoughtful readers was a good example of how people could be supported to learn leadership skills in community. Barb’s autobiography The Goode Life was an example of someone who demonstrated leadership.
  • 38. Speaking out was perceived as important, but it was equally important to be a good listener, particularly to other people with disabilities and other minorities.
  • 39. Love Liz always includes these couples kissing in our graphic recordings. Sometimes it is two men, or two women, or a straight couple. She wants us all to be thinking of how important love, in all its variations, is.
  • 40. Leadership Handout Barb wanted to make sure people had something useful they could take back home, from this workshop. So we made them a one page “Planning for Leadership” document and gave everyone two copies – one for them to fill out, one to give to their agency to get them thinking more about how people could be involved in leaderly ways.
  • 41. 90 minutes later… the whole graphic
  • 42. Results In terms of what I hoped for, the session was an excellent way of “listening in” as an ally to an authentic conversation between self advocate leaders and those who wanted to be leaders… It was also transformational for some who attended – staff, parents and people with disabilities came up afterwards and talked about being more open to possibilities. About half of them stayed to fill out feedback forms
  • 44. What did you like best? • The self-advocates giving their stories x 4 • Handouts and being surrounded by so many self- advocates! Encouraging to see the movement alive and kicking! • That we got to have a say x 3 • Questions from the self-advocates/ideas about what works for them, visual depiction of discussions • It was interesting and fun x 3 • Making some new friends • Johannes and Barb facilitated very well together
  • 45. • What did you like least? – Too much to cover, too many people talking – needed to moderate this better – So short! X 4, no time to tell stories
  • 46. Is there another workshop you would suggest Inclusion BC organize in the future? And “Anything else?” • This was FUN! • Good class x 2 • The most powerful workshop I attended • Bring back all the funding for the SAF Caucus. Could this group come to the Inclusion Powell River? • My first meet with self-advocates. It brought tears to my eyes as I sat and listened to the wonderful self-advocates in the room. Johannes is a brilliant man in his field. Thank you! • [how does this work for] FASD and other invisible disabilities • More self-advocate workshops x 2 • How to teach youth to be self advocates • [How to] Help people get a job
  • 47. Next… in October, come visit…
  • 48. Next… or see us in Portland Come see us at TASH 2015 in Portland Oregon! http://tash.org
  • 49. Thanks! To Inclusion B.C. for hosting our presentation and being such a support to the idea of self advocate leadership for so long. To Spectrum Consulting for sponsoring our attendance. To my dissertation advisors Ginny Belden- Charles (Taos) and Jasmina Sermijn (V.U.B.)
  • 50. Please let us know if you have any thoughts about self advocates as leaders in their lives, groups and communities. Thank you.