Leadership and People with Disabilities, a Collaborative Study using Graphic Facilitation

With
presentation
notes as slides

www.101friends.ca #imagineacircle
www.imagineacircle.com

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INTRODUCTION
Aaron Johannes is an artist, workshop leader, graphic
facilitator, researcher, long time B.C. People First
advisor and the Director of Spectrum Consulting.
Collaborative: Learning, Research, Press, an
independent arm of Spectum Society, which has
supported folks with challenges in individualized ways
for more than 25 years. Spectrum Consulting is a
social enterprise which is the collaborative work of 8
people – half of whom have disabilities. He is the
author of two books, editor of two others, and illustrator
of two others - including the popular 101 Ways to Make
Friends: Ideas and conversation starters for people with
disabilities and their supporters. He has a M.A.
Integrated Studies (equity studies and education) and
over the last years has focused on ideas around
invitation, belonging, leadership and bringing groups
together in dialogues about commonality, often using
art, music, social media and improvisation. He is a
board member of PLAN (Planned Lifetime Advocacy
Network), sits on the TASH Community Inclusion
Committee and is an ardent fan of the B.C. Family
Support Institute. With his partner he is a parent and
foster parent to six children with various disabilities, as
well as a nephew, uncle and cousin to others. He
believes that inclusion is not just the right thing to do,
but is the answer to many of the challenges in the
world.


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THIS PRESENTATION IS BASED ON MY THESIS FOR THE MA-IS PROGRAM AT
ATHABASCA UNIVERSITY. THANKS TO DR KENNETH BANKS, WHO SUPERVISED
MY RESEARCH, AND DR. GLORIA FILAX, WHO WAS A SECOND READER – BOTH
OF THEM WERE GREAT SUPPORTS THROUGHOUT MY DEGREE. ALSO MANY
THANKS TO LIVEWORKPLAY IN OTTAWA, WHO HOSTED THE FOCUS GROUP.


WHAT IS SPECTRUM CONSULTING?
About 7 years ago our agency,
Spectrum Society, which has
specialised in individualised supports
for folks with challenges, in their own
neighbourhoods, wanted to start a
conversation in our province. We
quickly felt that we needed a different
infrastructure – books, methods, ideas –
as a kind of envelope for the
conversation. That off-shoot became
Spectrum Consulting. Collaborative:
Learning, Research, Press. Eventually I
felt there were questions which were
best answered by returning to
university. From the beginning of my
course work my interest was in how
people with disabilities are supported
as leaders.

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Spectrum Consulting is run as a social
enterprise and is the collaborative
work of 8 people – half of whom have
intellectual disabilities and most of the
rest of us are members of families
which include people with disabilities.
We do workshops and projects
together, organize research projects,
translate government documents into
plain language, host dialogues and
world cafes for all kinds of groups, and
produce books and run an online book
store. You can read more about our
projects at www.101friends.ca


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COLLABORATIVE: LEARNING, RESEARCH, PRESS

Aaron Johannes, Director,
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PART OF WHAT MOTIVATES US IS A QUESTION FROM BARB GOODE TO A
GROUP OF SELF ADVOCATES IN ONE OF OUR FIRST COLLABORATIVE
WORKSHOPS: WHO HERE FEELS YOU HAVE A MISSION THAT IS NOT YET PART
OF YOUR SUPPORTS AND LIFE?

Aaron Johannes, Director,
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ONE PROJECT LEADS TO ANOTHER…
THIS BOOK WAS DESIGNED, WRITTEN AND
MODELED BY SELF ADVOCATES


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SELF ADVOCATE LEADERS
• People sometimes talk about
self advocate leaders as if they
might not exist
• Sometimes self advocate
leaders feel they are not
recognised
• But there are leaders in more
than 800 groups in the U.S. and
they have run their own
advocacy organization in
Canada for more than 40 years
• The United Nations Convention
will increasingly require
representation by self
advocates on decision-making
groups


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CHALLENGES
• People feel tokenised
• Organizations don’t know
how to incorporate self
advocate leaders
• Supports are not
consistent or dependable
• Only 12% of students
have a “leadership” role
in their IEPs and in a U.S.
survey NO resource
teacher could think of a
student in special
education who had a
leadership role in the
school

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RESEARCH QUESTIONS
• When I began making my
question, four years ago, it
had to do with how allies
support self advocate
leaders
• Input from my self advocate
friends changed my
question and helped me
with plain language
• I had also started to focus
more on graphic facilitation
so wanted to ask a 2nd
question about whether this
was a useful
accommodation in a
complex conversation

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OUR IDEAS ABOUT LEADERSHIP HAVE
CHANGED A LOT…
How the focus group defined leadership

I used Parker Palmer’s ideas as a foundation
for thinking about leadership


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WHAT I EXPECTED TO FIND OUT


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“THE HOT SEAT” –
JUST LISTEN TO OUR STORIES

• One of the first
things that
happened is that
the focus group
participants said,
“We want to just
talk and have you
draw our stories,
and after that you
can ask your
questions.”

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“THE HOT SEAT” –
JUST LISTEN TO OUR STORIES
• This actually worked
out great as a lot of
their stories had to do
with leadership so by
the time we were
done with the first
half of the meeting
we just needed to fill
in some blanks, and I
had hardly said a
word! (Which in
research is a good
thing)

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WHAT I FOUND OUT:
• There were several
themes but the most
important of these
were,

• Leadership depends on
relationships
• For these self
advocates informal
and formal learning
was a life-long pursuit
• An agency and
supports who have the
right ideas can be
really helpful


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A MAP OF BELONGING
• The group of people, who
mostly did not know each
other, were supported by
their friends, staff, and
agencies, to be part of their
communities…
• This happened because
their communities was
supported to include
them… at work, in groups
they were part of with
people who had the same
interests, and in their homes.
Some situations needed just
a little support, some
needed none and some
needed more.

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RELATIONAL LEADERSHIP
• Present in oral
histories and
interviews with
leaders of self
advocate groups
• “Once they get to
know us, they can’t
help but want to
help us.”

• Evident in
participatory
leadership
• Community groups
insisted on inclusion
• Reciprocal “I like to
know there is help
when I need it, and
I like to help
people.’


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A MAP OF BELONGING
• In everything they
did, however, their
staff and agency
supports kept being
clear that this was
about their lives in
their community and
they had to make the
decisions and make
the choices…
sometimes it took a
while for people to
trust this.

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LIFELONG LEARNING
• For most of them, they
had not had a great
experience of school
• Some of them saw
learning as one thing,
and being part of a
school system as another
• They were determined to
learn as adults –
sometimes in classes but
also in informal ways, like
going to museums and
being part of
discussions…


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SUPPORTS FOR SELF DETERMINATION
AND LEADERSHIP
 Community Supports
 Employers, co-volunteers, co-op
members, other members of groups
of people who like the same thing
 Agency supports
 Everyone on the same page
 “community connectors”
 Questions that had to do with people
were deflected back to them
 Sometimes this took repeated
experiences to trust
 Keenan Weller "Our most important
job is restoring the right to risk in the
lives of people who have had that
dignity taken from them.”


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OTHER THEMES
Social media connections
“You have people who help you
and support you no matter what, you have
friends, you have... y’know, partners…”
“And phone numbers!”
“Yes - and Facebook.”
“Yes, social networking!”
“It’s fun and really social. And
you get to live life.”
“And you know you aren’t alone.”
“No, you are not alone, if you get
lost and or you are at a crossroads people
will come and get you and guide you.”
“Basically if you are in trouble,
people will help you.”

Employment
80 – 90% working
Volunteers
Negotiating complex
relationships


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GRAPHIC FACILITATION:
WAS IT HELPFUL? IN WHAT WAYS?

Allowed us to focus
on a complex
conversation
We could add
information as we
thought of it – could
keep track of our
conversation better
Everyone’s ideas
were on the same
page

This works for people
who have more
trouble
concentrating and
remembering
“I am a visual
learner” (3 x)
I think I understood
better how others felt
100% thought it was
very helpful


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CONCLUSIONS

“THOSE WHO SAY IT CAN'T BE DONE ARE USUALLY INTERRUPTED
BY OTHERS DOING IT.” JAMES BALDWIN

“We suggest a redefinition of the role of the service
and support organizations. Rather than solely
providing services and support, organizations serve as
bridges between people and community supports.
For this reason, the concepts and research findings
associated with social capital contribute to a
reformulation of organizational role.”
Nunkoosing and Haydon-Laurelut,
(post Winterbourne)


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LIMITATIONS AND SUGGESTIONS FOR
FURTHER RESEARCH
 There will be a plain language /
graphics version of the paper.
To get it (probably after
February 2014) check on the
101friends.ca website
 It was a small group supported
by an exemplary service
 So it became a study of best
practice
 It was “a perfect storm” of
inclusion – but doesn’t
reflect what is happening
everywhere


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LIMITATIONS AND SUGGESTIONS FOR
FURTHER RESEARCH
 It would be good to do this study
again in other areas, with people
supported by other services
 I still want to know what works best
for leaders in self advocate groups
 Luckily, Mark Friedman has done
a really great study that is
exactly what I might have done
– except bigger and better!
You can see some information
about the “Beyond Tokenism”
study at
http://www.slideshare.net/aggie
915/beyond-tokenism


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QUESTIONS?


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WWW.101FRIENDS.CA
AARON@SPECTRUMSOCIETY.ORG
For a copy of the thesis
project…

For a copy of the plain
language / graphics version…


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THE GRAPHIC FACILITATION
FROM THE FOCUS GROUP:

LEADERSHIP IN YOUR LIFE, GROUPS YOU ARE PART OF AND YOUR
COMMUNITY

Aaron Johannes

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Leadership and People with Disabilities, a Collaborative Study using Graphic Facilitation

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