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TRANSCRIPT:
Katie: Yeah so pivoting a little bit I’d like to talk about this idea that for people with disabilities especially because that’s what we care a lot about at Starfire, that this connection to social services usually means a disconnection from community life.
That it means a person getting kind of pulled off the path of community member and onto a path as a client. What can you say just initially about how that looks and how that works for people with disabilities?
John: I learned a lot from people who are labeled disabled, I’m not the wise guy on this. My response is I’ve learned from people with the real experience. One of these people was a Canadian named Pat Worth. And Pat was a younger man when I first met him, maybe 25, rather tall. He had escaped from an institution for the developmentally disabled, big old fashioned institution. And he said to me, “You know I think, one of the things, not all but one of the thing we ought to do is to organize people who are labeled in local communities so they could have a strong voice. Not their parents, not the professionals, but them, me, right?” He said, “You know about organizing, will you come with me for a month across Canada and see if we can start little organizations in the major cities of people who could come together and become a voice for themselves?” And so we did that and we got started with a fair number of groups. They chose as a name People First. When we got done we ended up in Vancouver after a month Pat said to me, “Now I think you can finally understand that our problem is not that we are disabled, our problem is we are disorganized. And the answer for us is to be organized.” But he also recognized, “and become active in communities.”
And I think initially that he had the idea that People First would be entry points into community life because they would be independent of agencies and systems.
Once we understand what Pat understood, that what we call and label a disability is really a name for a lack of power to join everyday life. The lack of power to join everyday life. And Pat had discovered how to make that power when he escaped from the institution, right?
So one of the basic things I think about the movement is, is everyday life goal? Is being a citizen in connection with others the place in life that you’re trying to achieve? And Pat had that in mind when he formed the group, but he first thought we ought to get enough power to get free of people who were controlling us and then we would have the possibility of moving to the world where we were connected rather than disconnected, or disorganized.
Another thing, one of my best friends, she passed away I think now three years ago, was another Canadian named Judith Snow. I think she was very famous in the United States too. And Judith was born so that she could only move her thumb and her face. And we became very, very close friends. She used to come and visit us for her vacation. And she told me one time she said, “You know it wasn’t until I was thirty years of age that I really understood who I was.”
And she said, “I had spent so much of my life being labeled and accepting the label and fighting the label but that didn’t tell me who I was.” And then she said to me, “When I was thirty I had a revelation, and it is that I am exactly the person who God created me to be and therefore I have every reason in the world to participate in this world because I have God’s gifts.”
Now you don’t have to put it in religious terms, you could say “I have gifts.” And so I think the relentless, relentless insistence that the critical question about somebody is not what’s wrong. It is, what’s their gift? And building a life out from their gift is the key to entering community.
Katie: You know for listeners who don’t know who Judith Snow is she is a pioneer really in education, in training programs, she’s an author, she’s written a lot of things and I actually had pulled a quote of hers leading up to this because I knew of your friendship with her.
“A gift is a personal quality that when it’s brought into relationships in a valued way allows opportunity to emerge.” - Judith Snow
John: Oh boy, that’s Judith. And Judith was a person who wanted to be a part of everyday life and I remember one time we have sort of a weekend home up in rural Wisconsin. She knew I was a fishermen and so she said to me, let’s go fishing. And I didn’t know about whether or not that was something that was going to be very good for her or if she’d really like it. But we went and the place we went to fish had some canoes and she said, well if I’m going to fish, I’ll have to be in a canoe. And she was in a wheelchair. You know and the idea of getting her into that canoe seemed to me a little perilous. But she had an aid and we got into the canoe. You know they’re a little tippy, I was very careful, a little afraid. And we went out together and I fished and she talked with me and watched and enjoyed the lake. And I caught more fish than I’ve ever caught before.
And I thought you know, she made me a real fishermen by taking her adventure, desire to discover, to be a part of it all. And she brought me into that world, and see what a benefit I got?
Katie: And those are exactly the gifts that she’s talking about.
John: Right.
Katie: Yeah, I love the list that you share that she has, that she said the gifts that people with labeled with disability have. I’ll link to that in the show notes for people to see but it’s brilliant.
One thing you mentioned when you were speaking about Pat’s story that I want to go back to is that sometimes parents, in the time that Pat was advocating and starting People First, parents were actually getting in the way of people with disabilities being part of community life. And now today, what we’re doing at Starfire is really putting families at the center of building community and we’re asking families and parents to participate alongside their children with or without disabilities to be a part of effective community change. So how do you know when you’re on the right track with that, as a parent, as a neighbor, as a connector, how do you know when you’re on the right track with building community?
John: You know that very idea is pioneering. I’m looking forward to learning from these families what kind of things they did, sometimes it might not have worked, I’d like to know that too. So I think I would probably approach the question you’re asking the same way I would approach if you weren’t say, anybody involved happened to have a label. And I would say that a family might first examine themselves in two ways: number one what do we all care about? What common interest do we have? And the second is: what gifts do we have? Those answers to those two questions are the keys to opening your access into community life.
Because you’ll usually find that almost any interest that people have there is some group, club, or association that is focused around that. So if you can come to that part of the communities’ life with what makes the group work anyway, a common interest about the same thing, I think that’s a pretty clear path to becoming engaged. Now you’re not creating something anew but something new may grow out of that relationship, right? And the other possibility is your gifts as against your interests. Your gifts are key to your entry into community. So what do we have that we care about, and can share, can use as our key and if we have been great stewards of Christmas maybe we can bring more Christmas to the block than the block has had before. I think that’s happened with one of your groups. So they’re looking at what they have to offer as the starting point that would involve other people who are attracted to that. Now, there aren’t a lot of people sitting around thinking, “Gee, I’d like to have a better Christmas.” But when a group of people offer them a better Christmas, right? All of a sudden they’re attracted. And that’s what makes almost all groups work.
Natural groups, clubs, groups and associations in neighborhoods are groups of people who are together for one or two reasons or both. Number one they care about each other, number two they care about the same thing.
Very often the way you come to care about one another is you get together because you care about the same thing. And then your care for each other grows. So those are the avenues I think of, what’s the ramp into the community? And it’s interests and gifts. And your honest conviction that you have something to offer, and not that the community will solve your problems.
You have something to offer. Everybody does. I’ve never met anybody who didn’t have something to offer.
Katie: So it sounds like you’re on the right track as long as you are using gifts as your north star and you’re focusing on that and the minute you start to veer off into some other direction maybe around your empty half or the problems, or going toward the service to fix things then you’re kind of veering away from the path.
John: Yes, excellent summary.
Katie: One of the things that you worked on in Chicago was a project called Logan Square. You were the principal investigator in this what became a publication written by Mary O’Connell. And in this introduction Mary starts to describe the myths of the ideal of a small town past where “people sipped lemonade together on the front porch, watched out for the neighbors kids, shared the works of the town and the fruits of their gardens.” And I think there’s a common argument, especially today, we’re very aware of how the way things used to be is oftentimes mythologized, you know, things were way worse back then for people who were marginalized typically who are left out typically. People with disabilities, people of color, people who are part of the LGBTQ community, people who are typically just like I said left out of communities. So when we’re talking about community building are you trying to get back to the way things were, or how do you marry those two ideas? Because I know you worked a lot with civil rights in your career?
John: Well I’m not sure they’re two things. I think people who are concerned about civil rights are concerned about equality and they’re overcoming formal ways of exclusion. So you can’t discriminate against me when I eat or when I’m in a restaurant or when I’m seeking housing. Those are formal ways of overcoming exclusion. But the law can’t reach to a local community that may be exclusive, right? You can’t pass a law saying you can’t be exclusive here folks. You’ve got to include everybody.
So I think our asset based development effort is always circumscribed by something that Judith said, and she was one of our best faculty members.
She said, “It’s our job to ensure that there's always a welcome at the edge. That exclusion is not what binds us together but invitation and welcome is what binds us together.”
I think that the idea of “civil rights” works as a means of dealing with formal structures and systems - but it is invitation and inclusion that works in the space that isn’t the formal world.
Katie: It’s so interesting how you just put that because it goes back to what you said about police officers, we need to generate safety in our own communities. They can’t be the only answer, and same with laws, laws can’t be the only answer in creating equality or inclusivity. We have to be the inviters and conveners.
John: People of color, people with labels of any kind live in a world where the majority or at least a large number of people, do not respect them. And laws will not produce respect. But if somebody on a block says, I know this person who's been on the margin and they have something to offer, come on in, we need you and that gets shared. Then you begin to see respect. And it’s the building of respect I think that is very much a word that says, we want you because you are valued, we know you have something to offer.
Katie: That’s beautiful. I’d like to just end with one final kind of question and it’s something that I like to end on usually is hope but I think too we need change and sometimes when you end on hope it doesn’t motivate people to do anything on their own. So I’d like to motivate people today with this question. What is the most urgent call to action that you think we have today as citizens?
John: Know your neighbor. Start at home. Margaret Mead said that all change starts with small groups of people. It doesn’t start out there it starts in here. So just historically if you want to change things, go next door, start there.
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