Almost twenty years ago I was at a conference and one of the tables in the display room was notably having more fun, and then I realized it was also the only table, notably, at a conference for and about people with disabilities, that was manned (or woman-ed) by people with disabilities. It was my first introduction to a People First group.
Thinking back to that moment, I have this odd memory of it as if it was a romance movie. Things got misty, and sort of rainbow-y around the edges, and as I looked across a crowded room, I knew we were supposed to be together and I began a walk that would take me… to a whole new world [cue the chorus of a Disney movie soundtrack]. In terms of my avocation of supporting people with disabilities to be fully participating citizens and neighbours, it was like that. I’d heard lots of experts and taken lots of classes and workshops, and I had done lots of things with and for individuals with disabilities, but I hadn’t ever gone to the source. I didn’t know they existed as a civil rights group. I came away from this international conference, which was amazing in many, many ways, with one intention: if they existed in B.C., I would find them and be with them.
The universe responded, as it often does, in an efficient way. I was working with Linda Perry, the Executive Director of the Vela Microboard Assocation, and she called me up the next week to say that she’d been asked to speak at a People First B.C. conference and really wanted to support them as “They do good work,” but she wasn’t able to go. Would I be willing to go do a workshop? “Would I? Thank you, Linda!” I said. For me, the universe often responds through Linda and I try to remember to say thanks.
The workshop I did was about advocacy and relationships: how do you know who’s supporting you in your life? How can you tell who is really in your corner? What do you do when people seem to understand your decisions and choices but then do something opposite? There 80 or so people with disabilities in the room. We role played and talked and made graphics. By the end of the day I was smitten and asked if I could be a volunteer.
Volunteers within People First groups mostly have a very specific role called “Advisors.” In 1988, Bill Worrell, working with self advocates, wrote a short, important book called Advice for the Advisors. There are many important parts to this work but the thing I love most is Bill’s patient and careful understanding of the idea of communication as something we learn to do, or not:
People [with disabilities] often do not have well-developed communication skills. Part of this is because once they are labelled “retarded”, very little effort is spent on teaching them reading or writing skills. But one of the fundamental reasons why labelled people communicate poorly is that nobody has ever expected them to do otherwise. Most of us have learned to explain what we think and feel because of the challenges in our lives that force us to express ourselves – for instance applying for a new job, getting along in personal relationships, trying to get something done by explaining your point of view to a government bureaucrat.
Suppose you were labelled with an intellectual disability. You would be expected to be a passive, dependent person. You would not be called upon very often to explain what you want. Your life would often be dictated by others. Your opinion wouldn’t be valued. You’d learn to be non-communicative. (5-6)
Out of this idea comes one of the most important and transformational ideas in People First’s organization based on participatory leadership: advisors speak when they are asked to, in a group that is not theirs. The gift is that we get to be present, and cared for, and appreciated, and it is an amazing gift, but these groups belong to those who have been labelled.
If one spends much time in regular meetings with people with disabilities, their families, special education IEPs, or other places where we meet to figure out how best to support what seems like an agenda of inclusion, contribution and citizenship, we become kind of en-culturated to a sort of speaking over and above people. In People First the focus on communication is completely different – things slow down, there is a demand that everything be in plain language, people take turns speaking and listening and those with the least communication abilities are listened to as carefully as those with the most. And then they might, or might not, ask advisors to contribute.
At a conference, my friend Gerry Juzenas, a long time self advocate and important contributor to the movement, was in charge of an open microphone and someone wanted to speak. She began speaking, passionately, and in a rush, but so inarticulately that no one had any idea what she was saying. And she went on for a while. I was thinking, “Well this is awkward.” I didn’t dare look around the room because I assumed that everyone was feeling as badly for her as I was.
Finally, she was done. She handed the microphone back to Gerry. There was thunderous applause. There might have even been a standing ovation. I looked around and everyone was grinning and smiling and fist-pumping. Gerry nodded and waited for them to give her her due. And then he said, “What we learn in People First is how to listen. We might not understand right away, and we might have to listen for a while, because everyone communicates differently, but if we keep listening, one day we’ll understand and that’s important because we all have something to say.” What a message.
It’s not a thing you would hear anywhere else I think, and so important. In an interview Peter Park, the first president of People First of Canada, was talking about having lived in an institution where he had no rights at all (not even the right to refuse to be a subject for drug testing) and he says what he learned there was how to listen. From an unimaginable experience of almost twenty years of not being heard, he learned to listen. I think this is incredible. At the conference, after Gerry spoke, Lorie Sherritt, the new president of People First of B.C., said “I’d just like to thank her for sharing – this is the first time she’s spoken at a conference before and she did a great job.” There was more thunderous applause. “And I think she’s going to be one of the self advocates of the future in our movement!”
A year later, at another conference, the same woman went up to take the microphone and this time she spoke more slowly, and some of the words were understandable, and at a certain point she called out to her best friend to come and help her, and together they told an amazing story about their rights and their lives.
At that conference, another friend of mine spoke for the first time. She was a woman I’d worked with in the first day program I was ever employed in. Dreadful things happened there, which people thought were quite normal. I stayed on, as many staff who care deeply about people with disabilities do even when they are uncomfortable, because I was concerned that without me no one would be listening to these people (it was a centre for augmentative communication). Finally there was an incident that led me to realize that there was no intention to change, but just the opposite. My presence gave them something to object to, to be distracted by, when they might have been examining what they were doing. In fact good people who worked here were more invested in the party line than they were in considering the individuals who were supported there. So I left and she and I only reconnected twenty or so years later, and I’d told her about the People First B.C. conference and she’d made a huge effort to come. One of the plans we’d talked about was to create a presentation about what our mutual experiences of that day program were like, from opposite sides (literally, opposite sides, as the staff were in one corner and the folks we supported were across the room and supposed to wait endlessly for our scheduled attention).
I had no idea this happened, she said in her breathless way. I didn’t know people gathered like this. An amazing self advocate in her own life, she knew of other individuals who had advocated for their rights against systems put in place to support them but which in fact assumed their incompetence, but she didn’t know there were groups or gatherings or a bigger conversation. During the open mike time, she asked for the microphone and she said, slowly and carefully, “I just want to thank you for having me.” She bought a membership and was intending to become part of a new local group. And the next day she passed away, far sooner and quite unexpectedly.
For me, it was almost as important a lesson as what I learned from Gerry. Because there is no time for patience. The time is now. Waiting is inexcusable. Those who hesitate need to just get out of the way. On the verge of a new possibility, people with disabilities can be lost to our communities; their potential for leadership and changing the world can be extinguished. Supporting self advocate meetings I often know that I could offer the “fix,” and say the thing that would take us more quickly and efficiently to a decision, but what I know and trust even more, after repeated experiences of making myself be silent and trying to listen as well as Gerry, is that the group will come to a decision that will be inclusive and often a better decision than I’d have offered.