Below the Radar Transcript

Episode 116: Field Notes from the Disability Justice Movement — with Al Etmanski

Speakers: Paige Smith, Am Johal, Al Etmanski


Paige Smith  0:02
Hello, listeners. I'm Paige Smith with Below the Radar, a knowledge democracy podcast. Below the Radar is recorded on the territory of the Musqueam, Squamish, and Tsleil-Waututh peoples. On this episode of Below the Radar, our host Am Johal is joined by Al Etmanski, a longtime community organizer, social entrepreneur, and the host of the upcoming Below the Radar series, The Power of Disability. I hope you enjoy this episode.

Am Johal  0:31
Hi there. Welcome to Below the Radar, delighted that you could join us once again. We're lucky to have Al Etmanski with us today, he's going to be guest-hosting a special series with us, so welcome Al.

Al Etmanski  0:44
Hey Am, nice to be with you. As they say in broadcast land. I'm a longtime listener of Below the Radar.

[both laugh]

Am Johal  0:51
Al, I'm wondering if we can begin — if you could just introduce yourself a little bit.

Al Etmanski  0:59
Well, I consider myself a community organizer. That's my trade. And in order to be a community organizer over the last several decades, I've had to learn to be a social entrepreneur — to find independent ways of financing, that kind of work. And most of my community organizing and social entrepreneurship has been in the disability world. And that is because I have — my second daughter has a disability. So I've been a member of the broader disability movement for over four decades now.

Am Johal  1:38
I love that you use the word ‘community organizer,’ because that word doesn't get used that often these days. It definitely was around in the 60s and 70s and 80s, and then other names started coming to be, as kind of professionalization in the nonprofit sector emerged — where we see words like ‘social innovation’ today. I’m wondering if you can talk a little bit about how you first got involved in community organizing?

Al Etmanski  2:04
Well my first involvement in community organizing was back in Nova Scotia. And if you could believe it, it was with seniors. I was young and had long hair, and really didn't fit the picture, but the injustices and inequalities experienced by older people in those days — there wasn't the guaranteed income supplement at the time. There was significant poverty, it was fundamental, there was no apparatus to support them. So that's where I began. And along the way, I became friends with Matt, and became friends with John McKnight — who I suppose you could say Am, inherited the Saul Alinsky mantle of community organizing. But I think John took it in a different direction. And so it was not only place-based as Alinsky was, but it was focused on the assets of communities, the assets of individuals. And so rather than just focus on what was wrong, it was paying attention to what was working, and to link that all together and leverage that for social change. 

Am Johal  3:15
In the decades that you've done community organizing, so much has changed from technology to ways of working. But you know, one of the things that people, certainly in the period of the Harper government in Canada — let's say people don't necessarily remember that is a period of advancing social programs. But you were involved with a number of people organizing around the Registered Disability Savings Plan. I'm wondering if you can just talk a little bit about how an idea like that comes to the surface, gains public policy traction, and then the real kind of political and community work of bringing that to the House of Commons and seeing it passed as legislation?

Al Etmanski  4:01
Yeah, I mean, the Registered Disability Savings Plan is something like — it's a cross between an RRSP and a Registered Education Savings Plan. And its focus is the long-term financial well-being of people with disabilities. We actually worked with three different Prime Minister governments, Am. So it was a 15-year campaign. [both laugh] It started with Jean Chrétien — there's probably some listeners you have who weren’t born when he was Prime Minister. [both laugh] And then Paul Martin. And, and then Harper's government. Paul Martin actually put it in the election he lost, he actually put the notion of a savings plan for people with disabilities in his platform. And so as soon as Harper was elected, we thought, 'oh, no, with fingerprints of the liberals all over it, you know, we're gonna have to go back to square one.' But we got really lucky, in that we got introduced very, very quickly to somebody who worked with Jim Flaherty — who was the Minister of Finance’s political campaign. And discovered that Flaherty had a child with a disability. And so it was like a big gate opening. And so he said, 'I get this, and I support it.' And so he cracked the whip and, and became a champion for it inside the government. In order for us to get there, we had to do grassroots mobilization though, Am. And I think that's to your point earlier, is that a lot of policymaking in the last 20 or 30 years, kind of relied on really smart people, and credentialed people, to kind of take the issue forward into government. But without the base, without the broad base. And what we did was we actually organized people with disabilities and families across the country, as a prelude to going into the Prime Minister's offices. And so that base really helped us with Jim Flaherty. And then the rest is history. There's now over $6 billion dollars in collective assets in the Registered Disability Savings Plan that people with disabilities can use on whatever they want, they're not clawed back by any provincial or territorial government, they don't have to report on what they're spending. And maybe one of the first instances of a group of people not having to tell the system, what they're spending their money on, or reporting it. And so it kind of removed the welfare Elizabeth and poor law apparatus from that particular social program, the RDSP.

Am Johal  6:43
Great, now Al, you're going to be a guest-hosting a special series on Below the Radar. We're really lucky to have you hosting on The Power of Disability. I’m wondering if you can set up this series for us, and who you're going to be talking to? 

Al Etmanski  6:58
Well, thanks for the opportunity, Am. I really appreciate the platform that you and Below the Radar, and your colleagues, and SFU is offering. So 40 plus years in the disability world, and I had to unlearn a whole lot of things that I thought I knew about disability. First of all, that it could be fixed. Or secondly, that it required a charitable impulse from society, on behalf of people with disabilities — to the point where I arrive, where I recognize that and realize that, people with disabilities are creators of the world that we live in. And that if we had ignored their contributions, we would not recognize the world we're in. The big difference is that most of those contributions are not acknowledged, or that the contribution of the individual is acknowledged, but not their disability. So in a sense, disability is written out of history in two different ways. So I wrote a book called The Power of Disability. And there's 100 plus stories in there. And it's packaged as 10 lessons for surviving, thriving, and changing the world. But it doesn't do justice to what I had researched. There's hundreds and hundreds of phenomenal stories. So the podcast profiles, six of the more interesting people locally and internationally, that I ran across in my research. And the point is to have the listener appreciate people with disabilities as authoritative sources on justice, on political campaigning, on democracy on citizen action, on art, on love, on sexuality, on social change, on astronomy. Just about every aspect of — all aspects of human endeavor. So, generally, that's the point of The Power of Disability as a framing, and the point of the podcast.

Am Johal  9:04
Yeah, so who are some of the guests you'll be speaking with?

Al Etmanski  9:08
Well, local disability justice artists like Carmen Papalia — a phenomenal individual. I mean, as a performance artist, he is incredible. He is doing audits of inclusion-accessibility, on major installations, museums, art galleries around the world. But if you look at the theory behind his work, it's actually really a call for citizen action. I mean, I think he's a true Democrat. Right now. He's working on an intellectual framework for action called Disability Justice. But if we were to integrate that into our own work, we'd be more engaged as citizens in the big challenges of the day. So, Carmen is one of the guests. I don't know if you want me to go through them all…

Am Johal  10:08
Carmen I know is going to be involved with the new SFU Gallery up on Burnaby mountain, right on the front end of the design of it. So it's really exciting. But yes, sir, if you can mention a couple of more people, you don't need to go through everyone. But whoever else — I know you don't leave anyone out either. [laughs]

Al Etmanski  10:24
One of the people profiled is Barb Goode. I mean, she's the first person with a disability to appear before the United Nations. She lives here in Burnaby. She is a proponent — she is the queen of plain language. Some people would say she has the disability of — an intellectual disability or a developmental disability. It's almost irrelevant to even identify somebody as having a disability. She's a phenomenal woman, she's led the campaign for the rights of people with intellectual disability, locally, provincially, nationally — has taken on court cases. A phenomenal individual, Barb Goode.
Another woman is Judith Heumann. Now, it's possible by the time this airs that she will have an even higher profile, because she is the featured activist in the documentary Crip Camp. Which is on Netflix. And it's one of the first ones that Michelle and Barack Obama financed with their new company. And it's on the shortlist for Best Documentary at the upcoming Academy Awards. It's essentially a profile of the largest, longest, sit-in of the American government — by disabled people, by anybody. But this one was by disabled people, that led to the Americans with Disability Act. And Judith human is — she was voted one of the 100, top women of the 20th century by Time Magazine. Anyway, I'm delighted that she's profiled in this. So those are a couple more.

Am Johal  12:29
Yeah, that's amazing. And Al, in your long history of community organizing, you've really had a front-row seat looking at the civil society sector, and government, and the public sector, change over time. In terms of how to make change, and a lot of ways. And wondering if you could sort of reflect on some ideas you have on the sector as a whole. Particularly, in this pandemic moment, coming out of this pandemic moment, in terms of what are the things that need to be thought about, or redone, or reimagined in the sector?

Al Etmanski  10:24
Well there's many answers to it. And I don't know exactly where to go with it, but I would say an increased emphasis on justice and equity, Am. I think sometimes we get ourselves into knots around the nuances of social change. But I think a fundamental challenge to our economic structure is inorder — I would say to capitalism, and its excess greed that, you know, that exists. Which is why I'm a big fan of a restructuring of the economy, toward basic income. And you know, we're quite involved in a basic income campaign for disabled people right now. So that's one element.
Another element is, I think it's time for people like me, and big organizations, and people who are not experiencing the challenge — who are not living with it. It's time for us to step back. To use whatever privilege or influence we have to enable people to speak for themselves. In the case of disabled people, enough is enough. It's time for the power and presence of disability to be felt in the public policy arena, and for them to take it over. So the days of the smart credentialed, public policy, you know — taking over from the constituency is over. So that's a that's going to require a fundamental altering. Because I think that really means grassroots campaign and political organizing.
The third element is a variation on this, you know, which is to have faith in people's ability to speak for themselves, whether they're poor or homeless, or have a disability, you name it — or have an opinion, and are engaged in dealing with climate change. So that might seem obvious to somebody like you as a community organizer, but I don't think it's obvious out there. You know, it's a variation on what I said, of others speaking for ourselves, I think, it has been proven to be limited in terms of preparing us for COVID. And in terms of dealing with the cracks exposed by COVID. So it does require a shift in mindset, to appreciating the value of people speaking for themselves, the capacity, the competence, the power of people to define their own problems and challenges. And to determine the solutions, and to determine when others come in to support them.

Am Johal  16:11
I hear John McKnight being channelled through your voice there. [both laugh] I do have a question around the basic income piece that — where discussions are happening at the federal government and other levels. I'm wondering if you could speak to that portion of what's on the policy table, in terms of national grassroots advocacy that's happening around this?

Al Etmanski  16:39
Yeah so the reality is that the majority of people who are poor today in Canada, are disabled. And so the mindset that looked at people with disabilities as to be pitied, or as recipients of charity, is a mindset that is kept people with disabilities program-rich, but cash-poor. And the autonomy, the agency that comes with having the money to make your own decisions, about your life, has been missing from the solution to the dilemma of people with disabilities in Canadian society. And so we have reached the point where the Canadian government has promised in the throne speech, a Canadian disability benefit, meant to top up the provincial and territorial income support that is currently available. As a community, the disabled community have said, we interpret that as the equivalent of a basic income for disabled people in Canada. That's been reinforced by the Basic Income Report here in British Columbia that was released earlier this year. Beginning on page 399, it kind of lays out the importance and rationale of a basic income for disabled people. So we're, we're engaged in a pan-Canadian grassroots initiative representing every part of the country, representing every conceivable disability, taking the lead, and holding the government at the federal levels, feet to the fire. And ensuring that provincial governments don't claw back what the federal government provides.

Am Johal  18:33
So Al, you went down to Oakland and visited Jerry Brown, who was the mayor there — previously the governor, became the governor later on, but you went and travelled a lot of places to find ideas to bring back home. So tell us a little bit about that story.

Al Etmanski  18:48
So every Labour Day, Jerry Brown would host thinkers from around the world, and he would bring in one leading thinker as the thinker in residence, and then invite others — reasonably well known people to join him. And this particular year, he invited Ivan Illich, who was a man who influenced my life profoundly when I was in university in the 60s. He wrote a book called Deschooling Society, which said that schools make people stupider. And his general feeling was that the professionalization of help actually made people more helpless, and it had a profound effect on me. I had met him once before, when I was training to be a social worker. So he was there. And, and a friend of mine, John McKnight, community organizer himself out of Chicago, was one of the speakers as well. So a bunch of us travelled down there to this week-long event. And as it turns out, Brown had an old warehouse in Oakland, that he had turned into a large dormitory. And so we could, we could actually sleep there, he had a massive table that we could gather around to eat. And then in the evenings, he had a separate room where 300 or 400 people from the area would come and listen to the speakers. And so we got to know Illich a little bit better. And as it turns out, he had a massive football-sized growth on the side of his face, which he refused to have operated on, because he wanted people to continue to see his smile. And so that tells you a lot about him. By that, as well he was mistrustful of the medical system, because he had researched it to the point where if he had an operation for this cancerous growth, he would not have survived as long as he had. But he was in pain. And so we had the opportunity on a couple of occasions, to go up to his room, in the dormitory, and where he would self-medicate to control this pain. So he would smoke. So there we were, listening to this master, this incredibly wise person. And then he would, he would make this sound, and the pain would strike him, and he would put his head down. And then a couple of times he would light up his pipe and smoke some, some opium to alleviate the pain and then proceed to continue expanding, not whatever it was he was talking. It was, on one level it was surreal, on another level, it was one of the more profound experiences of my life, being with this great man.

[both laugh]

Am Johal  21:50
Thanks so much Al, thats fantastic, that needs to be out there. That's so good. Thanks so much for sharing those stories, Al. The series on Below the Radar is going to be called The Power of Disability, and Al Etmanski will be hosting a number of phenomenal activists, social change leaders, people who've done remarkable work that deserves wider recognition, and to have those stories out into the public sphere. Thank you so much for joining us, Al.

Al Etmanski  22:27
All the best thanks for the opportunity, Am.


Paige Smith  22:31
Below the Radar is a knowledge democracy podcast created by SFU’s Vancity Office of Community Engagement. I hope you enjoyed our conversation with Al Etmanski. Episodes of The Power of Disability series will be released Thursdays on the Below the Radar feed starting next week. Head to the show notes to learn more about Al and his book that inspired the upcoming series. Thanks for tuning in, and we'll see you next time on Below the Radar.

Transcript auto-generated by and edited by the Below the Radar team.
April 15, 2021

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