leadership and people with disabilities, a collaborative study using graphic facilitation

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

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With presentation notes as slides


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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.


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.


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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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WHAT IS SPECTRUM CONSULTING?

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

http://www.101friends.ca/

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WHAT IS SPECTRUM CONSULTING?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.”

Employment80 – 90% working

Volunteers Negotiating complex

relationships


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GRAPHIC FACILITATION:WAS IT HELPFUL? IN WHAT WAYS?

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

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


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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 serviceSo it became a study of

best practiceIt 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/aggie915/beyond-tokenism

http://www.slideshare.net/aggie915/beyond-tokenism




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QUESTIONS?


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WWW.101FRIENDS.CA [email protected]

For a copy of the thesis project…

For a copy of the plain language / graphics

version…

http://www.101friends.ca/

mailto:[email protected]

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THE GRAPHIC FACILITATION FROM THE FOCUS GROUP:

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

Aaron Johanneswww.101friends.ca

#imagineacircle www.imagineacircle.com

leadership and people with disabilities, a collaborative study using graphic facilitation

Education