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Reflections on a presentation by Barb Goode, Liz Etmanski and Aaron Johannes on inclusive research about leadership and people with intellectual disabilities at the 2015 Inclusion B.C. conference in Vancouver, B.C..
Reflecting on:What Works: Self Advocates as Leaders in their Lives, Groups, and Communities
What Works: Self Advocates as
Leaders in their Lives, Groups,
Workshop presenters: Aaron Johannes,
Barb Goode and Liz Etmanski
Inclusion B.C. Conference
Keep Moving: Don’t Stop
Friday, May 29, 2015 3:30 – 5:00 PM
• 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
• 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
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
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
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
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.
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
Like many participants in these
leadership conversations they
wondered why they don’t know
more about the research that does
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
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
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.
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
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
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
communities. It has been
our experience that
people want to involve
self advocates but don’t
The room was packed… the conference
organizers had already put us in a bigger
room. This has been our consistent
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.
What’s a good story of a self advocate
leader you know?
Many people had
examples of self advocate
leaders they respected…
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
development, considered both
sides of questions, and been
open to meeting and
One sign a of a good
leader was evidence that
they were involved in their
However, people also
wanted to be sure that not
only the easy communities
or easy populations were
attended to, but the more
such as the downtown east
As in other conversations
their concern was that
everyone was treated
David Roche, who recently
moved to B.C., has quickly
become a great hero to
the provincial self
Stories of what helped you
be a leader?
To be treated with respect
To be informed by using
accommodations to prepare for
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
Increased leverage through
connections led to increased
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
Could there be local plans
through B.C.’s community
councils for self advocate
Plans for consistent
accomodations for inclusion
such as graphic recording.
Plans for increased
Plans for increasing mastery
leading to leadership of
Organizing and Supporting
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
It was important to have
clear goals and also to
clearly identify what one
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
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
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.”
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
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
Speaking out was
perceived as important,
but it was equally
important to be a good
listener, particularly to
other people with
disabilities and other
Liz always includes these
couples kissing in our
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.
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.
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
About half of them stayed to fill out feedback forms
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
• 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… or see us in Portland
Come see us at TASH 2015
in Portland Oregon!
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
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.