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

and Communities Workshop presenters: Aaron Johannes,

Barb Goode and Liz Etmanski

Workshop atInclusion 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 AgendaLike 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 AgendaAfter 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.