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Sheenagh Morrison interviews Aaron Johannes: Research on Researchers

July 27, 2013
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TedsTalks4-026

Aaron, working on a graphic for a group that is planning a new project

Sheenagh: I love the book 101 ways to make friends, how did you start it and why did you want to write the book?

Aaron: Thanks!  I’m so glad you like it.  It’s in about seven different countries now, and has sold thousands of copies.  It has had a great response – we get letters all the time from people who love it.  My favourite thing has been all the talks that Jim, our Manager of Social Enterprises, has had with librarians about how they want to have things that folks with disabilities will want to read.  They want to be welcoming – that’s a powerful thing.  What we hoped when we began this division of our agency was to start some new conversations and provide some infrastructure to those conversations.

About seven years ago our agency was looking for something different to focus on and we got a small contract from Community Living B.C., to look at the support networks of folks with disabilities.  That led to a report called “With a Little Help from my Friends” that Susan Stanfield and I wrote, and we started doing workshops.  People would come up and they’d say “wow, great ideas but here’s how I made my friend,” or “Here’s how I supported my family member or the person I work with to make friends.”   We started keeping a list of these great ideas, and giving it out as a handout, but the list kept getting bigger.   Susan said, “Maybe this is our first book?”  And I said, “Maybe I should draw some pictures?”  And it was a good beginning to our plan to start some conversations about what John Lord calls “the new story” and provide books that would support those conversations.

Sheenagh: you have been involved in the community living field for a long time, what got you interested in it and involved in such a great field?

Aaron: I love it that you say “a great field” – I think so too.  It was pretty much completely accidental.  I was so lucky!  I realized I didn’t want to be a teacher just as I was getting ready to graduate with a teaching degree!  Yikes!  The university advisors sent me to a course on finding a new career.  One assignment was to interview 3 people who seemed happy in their work; I interviewed 2 professors, and by the end of those interviews they got me into graduate school.  I also interviewed someone who worked weekends in a group home, and she loved her job so much – she was excited about things I’d never thought about.  In the middle of the interview she said, “Let’s call the Executive Director!” and I was pretty much hired over the phone!  It was like coming home for me, but I found I didn’t like that system anymore than I liked the education system so after about a year I left, but I wasn’t happy to be quitting.  It seemed like so much was possible – but it wasn’t happening there.  Somehow I got an interview with Ernie and Susan, who had just started Spectrum – I didn’t have much faith left in finding anywhere that “walked the walk” so I wasn’t even sure I would go.  At the last minute I decided to, and in the interview they asked really good questions I didn’t know the answer to, and I asked all kinds of cranky questions about “walking the walk,” and they had really good answers!   I’ve been there for 25 years now.  They still ask really good questions I don’t yet know the answer to!  I’m very proud of everything we’ve done to create a different kind of agency.  I love it when people come to work at Spectrum and say we gave them a place where they can fulfill their mission to support people they care about, in ways that they hadn’t been able to find.  And we’re all about being, as Susan says, “a learning organization” – so we keep trying to get better in ways that matter to folks we support.

Sheenagh: can you tell me a brief story of a friend with a diversabilty that has made a impact on your life ?

Aaron: At a TASH conference in Seattle about 20 years  ago I met some folks from People First and I thought they were amazing.   I wanted to see if there was a group in B.C..  Literally a few days after I got back, my friend Linda Perry called me as they needed a  workshop at B.C. People First’s AGM and she asked could I do it?  This is pretty much how things work out for me!  Shelley Nessman says I am a master manifester.  When I got there I met lots of great people but President Arnold Bennington, who passed away a few years ago, was my greatest teacher – we had so much fun together and I learned so much.  He really changed my life, and he made that transformation fun!   The work I am doing in graduate school is based on some of Arnold’s ideas, 20 years later.

Sheenagh: you’ve gotten really interested in this idea of research that includes people with disabilities and different kinds of partnerships – where does this interest come from?

Aaron: going back to graduate school has been great because my questions are so much clearer now, and my professors at Athabasca University in the Interdisciplinary Studies program have consistently made a welcoming space for what matters to me, and what I discovered was, first, to my surprise a lot of what I wondered about hadn’t been well researched and, second, a lot of the research about people with disabilities hadn’t been very positive for them.   Even when they were included in research projects, it seemed that typically the promises made to them weren’t being kept.  So I started finding out about what in England and Australia is called “Inclusive Research” – where people with disabilities get to ask, or be part of creating, research questions that matter to them, and then they get to follow through on those processes of gathering information, looking for themes, and presenting that information to their peers and the world.   These partnerships are very exciting but like all partnerships, where we don’t just settle for taking on the role of professional, require us to rethink our roles – whereas we were the experts, we are now facilitators in research that addresses questions that matter to those who are really experts in their own lives.   My thesis is about how people with intellectual disabilities take on leadership roles in their lives, in the groups they are part of and in their communities, and the second part of it is about how graphic facilitation works as an accommodation that enables people with intellectual disabilities to understand complex information and be leaders.   So far it’s been great to collaborate with some of my friends on designing the question – it won’t be done until December but I’m looking forward to the results!

Sheenagh: you are known as a writer, agency leader, facilitator and graphic facilitator – how does all this fit together?

Aaron: I am also a parent, volunteer with B.C. People First and friend and advocate.  I get to be in so many roles and part of so many circles, it is endlessly interesting.   Working as a graphic recorder and graphic facilitator has really completed a circle for me as my only regret was that my work kept me from making art – but now about a third of my time is spent drawing as people talk, or figuring out ways to use art to help people think through processes.   I’m also pretty excited about Spectrum Consulting – Collaborative: research, learning, press – of which I’m the Director.  There are 8 of us working there, four people with and four people without disabilities – this is really my dream job!  Perhaps most importantly what I hope we are doing is tackling unanswered questions and I don’t think we can get to the answers that will matter using the same old strategies – so it seems like working collaboratively through art, writing and theatre allows us to explore possibilities – it’s all about interdependence and partnerships.

Sheenagh: what’s your favourite thing about this work?

Aaron: in our workshops, I like the moment when we ring the bell and ask people to stop talking so we can move on to the next part, and they keep talking.  Funny eh?  I think a lot of people come into this work because they are rebels – and parents, who don’t usually get a choice, often are radicalised by their experience of the system – we all want to see things change for the better.  But we end up becoming part of systems that often resist change, and seem to be purposefully mystifying, and everyone is trying to do 90 hours of work in what’s usually a 50 hour week and doesn’t have time to really reflect and process.  It’s hard to hold on to that agenda of civil rights and social transformation and I love having a small part in bringing people back to that agenda.  So we appreciate it so much that people stop and sit with us and are open to meeting and sharing – and I love it when staff start talking to moms, and moms start talking to government workers, and the local mayor comes in to learn from the local self advocate leaders.  The biggest challenge in our field is inviting community in – and yet it’s the most fun and interesting thing to do, and I love supporting people to host those gatherings.  So my favourite thing is when we ring that bell and no one wants to stop talking – they want to continue hosting and dialoguing with each other.  They are, to paraphrase Martin Luther King, seeing the first step forwards and having faith that the rest of the steps will become clear…  if we all work together.

But it’s really hard to identify any one thing – I can’t believe the people I get to spend time with and the things I get to do at work.  I give a lot of credit to Community Living B.C., Inclusion B.C. and agencies and organizations in B.C. for giving us so many great opportunities. But my favourite thing might be working with Jule Hopkins – I met her a long, long time ago on a committee we were on and I always remember that moment when she opened her mouth and she was just so brilliant I almost fell out of my chair.  Our field is lucky to have her.  When we decided to run Spectrum Consulting as a social enterprise I asked her for some ideas and she took time to help and I wrote everything down as fast as I could.  Sometimes I think we’re still working from those notes, seven years later – and for her it was just a thing she did over lunch.  No biggie.  And she takes credit for pretty much nothing that she accomplishes.  She’s really a hero for a lot of people.  And we need to acknowledge that these are folks who could have done anything else with their lives and been hugely successful – and they chose our field and they care about the people we care about.

But my favourite thing is really working with families.  Pretty much everything I get credit for was something that a family taught me.  As a service provider, they have been endlessly helpful and gracious and so supportive of our work, and great champions and educators, and then they’ll tell us about how the system has treated them and I always think, wow, and you showed up here yet again with good intentions and trust and hope wanting to help.  We need to say thanks and be appreciative of what in Buddhism would be called our lineage…  Mildred DeHaan was involved in some of the first community schools and some of the first community living supports – she spent endless hours with me when I started in this field; she never hesitated to take my calls or come to where I was or answer any question I asked.   She literally never said “no” to me.  When she retired, on her last night in town, she said, “I’m handing you this torch.”  I didn’t think I could ever live up to that, and I am still constantly asking, what would Mildred do?  And it continues to be  a very good question!  And almost always, the answer I hear is “be kind.”  Mildred and the Dalai Lama actually send out the same message!

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