“Pushing Limits” with Stephen Drake on DRLC (KPFA radio, 3/20/15)

Adrienne Lauby: Welcome to Pushing Limits, KPFA’s disability program. We’re here every first, third, and fifth friday at 2:30 pm. I’m Adrienne Lauby here with Eddy Ytuarte.

Eddy Ytuarte: Hi Adrienne.

AL: Hey Eddy. How ya doing today?
EY: Oh, I’m fair.

AL: You know, we had a program not so long ago, and we talked about a disability organization, the Disability RIghts Legal Center, which has filed a lawsuit in San Francisco Superior Court challenging California’s right to prohibit assisted suicide.

EY: Yeah, I remember that program. We took part of it. That was the one that had the discussion between the two sides around physician assisted suicide. There was a debate, and this organization did come up. And also what was happening around this time or what was happening with this organization, Disability Rights Legal Center, is that they began a major controversy, when they hired somebody called Kathryn Tucker as the Executive Director of this whole organization. That happened September of 2014. Now Tucker, Kathryn Tucker, the ED, is a well known advocate of physician assisted suicide serving for many years as Litigation Director for Compassion and Choices, one of the leading organizations lobbying in the drive for physician assisted suicide, not only in California but in other states in the country.

As most of you know, the disability community has strongly opposed physician assisted suicide. Very few organizations, I know of, have ever supported this idea, and this is about the only organization I could think of that has taken this unusual, unusual stance. Now shortly after the hire of of Ms. Tucker in September of 2014, some 26 disability organizations and prominent individuals sent the center a letter asking the Disability Rights Legal Center to begin a dialogue about this most sensitive issue. We did get some feedback as to what happened with that letter. We saw the letter. It was there. It was asking for a dialogue, and we did get some information from attorney and former staff person at the Legal Center, Michelle Uzeta, who also was one of the signers of this letter. And Adrienne, what did this letter say?

AL: Well, this is what Michelle Uzeta said, “Sadly, there was no meaningful response to the disability community on the letter requesting dialogue on the assisted suicide issue. One of the lead signatories did reach out to the board president who was described being defensive and clearly in the dark about the nuances of this complex issue. As a whole, signatories were all just directed to Ms. Tucker who was similarly uninterested in dialogue and unphased by the concerns raised in the letter, unsurprisingly so, as her position on the assisted suicide issue well known and established.”

EY: So this really raised our interest here at Pushing Limits, and we started taking a look at who is this organization and what’s the board make-up. We had heard about it. It was originally the Western Center for Rights for the Handicapped. They changed their name but they’ve had a really strong forty-year history, and so we started taking a look at the board of directors hires this ED, so who sits on this board at Disability Rights Legal center. So we looked through their websites and we saw – we looked at the websites of the different board members – and it seems there are twenty people on this board and 18 are attorneys. Sixteen from our examination appear to come from the corporate world. None of the 20 people really self-identified as disabled, although we know at least 2 of them on the board are probably disabled, but nobody even identified as disabled.

When I see rosters of other disability-oriented groups, people are proud to say they’re disabled and I’m here and that’s one of the reasons why I’m here. But none of these people – of these twenty – said that they’re disabled. Very few of them display any kind of disability awareness or activism in the disability community. We must say that there are exceptions. Betty Wilson is somebody, who I would like to have on the board based on the people I saw. Also Saralea Altman, who was one of the founders of the organization some forty years back, and she has impressive experience. There are a couple people that I would like to see on this kind of board but the others, corporate attorneys, I don’t know about that. Anyway – nonetheless we think it has a good history. The range of service is fine. We feel most for the staff, because they have to serve under these people and as far as we know they have a good dedicated staff and it really would be unfortunate for a fine organization like this took a turn, because of the people who are at the top and the executive director who may not be the most proper place, Adrienne.

AL: Wow, so speaking people at the top, we invited Mike McDonough to come here today and defend the actions the board took in hiring Tucker, but he declined.

EY: One of the things he said – now this is a corporate lawyer – it sounds like he’s on the phone very good and articulated, and he told me on the phone a couple days ago that he did not want to come in, because he did not want to be cross-examined.

AL: Well, yeah know, if you’re an attorney, you don’t have to be cross examined, I guess. But today we really are going to talk about the board of directors not just of this nonprofit but of all nonprofits who serve our community. Non-profit organizations play a significant role in the disability community. They provide services, they impact our image, and they advocate for political and policy decisions on our behalf. So think of this as a cautionary program. Just like the Disability Rights Legal Center, it has been taken over by alien interests, well so goes your favorite disability non profit. Well, we’ll see the truth of that as history unfolds. Let’s bring in our guest today, Stephen Drake. Stephen is a research analyst for Not Dead Yet. He served children and adults with disabilities for ten years, obtained a masters degree in special education, and began a PHD program in special education at Syracuse University. He left that doctoral program to become a full-time activist and researcher at Not Dead Yet. Stephen Drake is a person with non-apparent disabilities related to hydrocephalus and not entirely coincidentally – I’m sure – a survivor of a doctor’s recommendation of passive euthanasia. Welcome to Pushing Limits, Stephen Drake.

Stephen Drake: Thank you for inviting me. I’m happy to be here and have this discussion with you.

EY: Stephen, the core of the problem as we see it at Pushing Limits is that the Disability Rights [Legal] Center seems to be the board. The board of course hires the Executive Director and then evaluates her. But your board – we took a look at the make up, and it seems to be really the polar opposite of this organization. How do you recruit and how do you keep such expert community focus people on the board?

SD: Well from the very beginning in Not Dead Yet, which is basically a grassroots organization, we decided that the board needed to be all people with disabilities, and specifically we’ve drawn people from the activist community, people with a history of advocacy and activism and that’s been done for years by having a subcommittee on the board. When they’re looking for new members, they look at who’s available. Who’s really been interested in our issues? Not Dead Yet reaches out to them, when it’s time to get new members on the board, and that is how a lot of grassroots organizations function. Of course Centers for Independent Living have kind of a different balance they look at, because as a lot of nonprofits, your board can be people from the community who have connections to people with money who can bring in donations, but you want to make sure – Centers for Independent Living are required to have a majority of their board members be people with disabilities, but you want to always make sure – even as your board evolves and changes – that you have a solid majority who are in sync with the philosophy and values of the entity, and the people who started it. That obviously didn’t happen with DRLC. Something fell by the wayside here.

EY: Yeah, I did want to go back to one thing that you said. First of all, I definitely agree that it shouldn’t be a problem getting 51% people with disabilities on any disability-related board, particularly somebody like the Disability Rights Legal Center. One of the expectations that we sometimes have for board people is that they’re supposed to raise money. See I think, actually, that’s why you go out and hire a good development director and a good executive director. If a board member could raise money that’s fine, but also if there are people out there that believe in your organization – the disability organization – I think it’s quite ok to hire people with expertise and connections, and bring them on as auxiliary board members or bring them on as financial committee members or something. They don’t have to be board members and they don’t have to be encumbered just in the day-to-day kind of politics that happen on boards. The fundraising is good, but they don’t have to be on boards – the boards themselves. Nonetheless—

AL: What do you think about that Stephen?

SD: Well, I think that’s a good point, and I think that’s how most Centers for Independent Living have developed themselves. It’s very hard to find really wealthy people who have disabilities and—

AL: That’s just how our community is. We’re not a really wealthy community.

SD: Yeah, we’re not. We’re heavily impoverished. What’s worrious is when you – when you have a situation like what’s evolved here – is that rich people have very good ideas on their own about what should be done, or what they think are good ideas. You know, the Jerry Lewis Syndrome is a good example. Jerry Lewis was a person thought he knew what was great to help people with disabilities, that a lot of us rank-and-file folks found nauseating and offensive.

AL: So your organization obviously needs money. It needs to sustain itself. How do you deal with this money issue? Do you find people on the board who are disabled and are able to raise money? Or do you just say that’s not important?
SD: Well, the money raising is important, but it’s been divorced from the board part of it. We thrive through private donations and support from the Independent Living movement. And that’s how we survive, and of course as a result we’re able to do our work, but we probably have 1% or at the most 2% of the same budget that Compassion and Choices has.

EY: By the way, what is the focus of Not Dead Yet? Is it purely involving yourself in issues surrounding assisted suicide or even euthanasia or what?

SD: Well, we deal with anything that’s related to threatening the lives of people with disabilities, including biased press coverage at the murders of disabled family members, who will frame an elderly guy killing his wife as a mercy killing. When the public sympathizes with a parent who kills an autistic child, so we try to intervene and raise press awareness on those cases. We also get involved in policy that threatens the lives of people with disabilities such as futility policies which allow medical professionals to overrule the wishes of individuals and family members to continue—

AL: What a second. I want to go back. Futility? What is that?

SD: Futility. Futility policies.

AL: And what does that mean?

SD: It allows medical professionals to say they refuse to provide what they call futile treatment to somebody regardless of the wishes of the family and the individual. What they mean by futility though is not that providing treatment won’t help the person survive. What they mean is the value that that life has – does not merit the expense and the effort. We’re talking mostly people with degrees of brain injury – people with labels of severe and profound intellectual disability. That’s where they want to step in. Not that they want to stop a treatment that won’t work, but they want to stop a treatment, because it will work.

AL: I see. That’s pretty chilling.

SD: Yeah it is. And it’s still operating mostly under the radar. I want to go back to what little response you had from the DRLC Board.

EY: Yes.

SD: The idea that they hired somebody without knowing what their background was, what the implications were, is frankly unbelievable. That’s what a board – no board hires an ED without knowing what they’re going to do, without knowing what they’re going to do for the organization. I have to believe that the majority of the people on this board knew the history of Kathryn Tucker and hired her specifically for that, because now on their website of DRLC they now list so-called end-of-life issues and assisted suicide being prominent as one of their major activity areas, and a board that says they didn’t know that was going to happen is admitting they’re incompetent. These are corporate lawyers. I don’t believe they’re incompetent.

EY: I agree with you. I mean, I don’t think they’re that dumb that they would hire this person without knowing what she stands for, where she comes from. They can’t be that dumb, and you know—

SD: There’s a coordination factor. Back in July, Compassion and Choices made a major move to get outreach into the disability community, submitting an ad to New Mobility Magazine, which is a very popular magazine about people with disabilities, and also launched an ADA video, which they say was a tribute to their volunteers, which suggests of course that they have no employees who are disabled. It’s really farcical to watch. There are two individuals who are entitled to their opinions. They’re very sincere, but when they captioned it, some of the captioning for the people with disabilities comes out as gibberish. They didn’t even bother to go back to make sure they could make captioning reflect what they said. It was this time. They geared up and did this outreach to disability. It’s really hard to think that this wasn’t coordinated in some way.

AL: It seems very coordinated. Let’s tell our listeners what they’re listening to. This is KPFA Pushing Limits, KPFA’s disability program on 94.1, and we’re talking to Stephen Drake, policy analyst from Not Dead Yet, particularly about a non-profit legal disability non-profit in LA who seems to have changed its mission significantly to advocate for physician assisted suicide.

EY: And again, I have to bring up the fact that we did request Mr. McDonough, the president of the board, come on, and he refused. We’re talking about a lot of stuff. It’s based on what we know of the organization. A lot of it is taken from websites, about the different members from different websites, and we would have loved to have given him the opportunity to respond to our concerns. We’re from the disability community. These board people – I don’t know where they’re coming from – but they do not show any kind background in the disability community, and it’s just too bad. It’s really too bad this organization will not talk with us on the air.

SD: Right, communication and open discussion benefits everyone. I think they should be asked hard questions about what the future is for them. Compassion and Choice’s pro-assisted suicide movement has a lot of money in its deck. The rank and file, the vast majority of the people, are white people in the upper-income brackets. At the World Federation of Right to Die Societies [conference], there was a promotional poster, large on one of the walls, to invite people to the annual banquet of the DRLC. Now the people who went to the conference in September are people from all over the world promoting assisted suicide and euthanasia, who really don’t care about disability rights and never have, but they will be donating to this organization and probably some of the 501(c)4s that are attached to assisted suicide groups will be throwing money in, too. And if that pot of money grows for assisted suicide, and it’s the largest pot of money they have, it wouldn’t be that long before the DRLC finds that their main focus is assisted suicide, and their other efforts that have been so successful and so worthwhile over the years start to fall by the wayside, because there is just not enough money supporting those efforts.

AL: You know, I’m going to take a little step back, because Disability RIghts Legal Center is just one organization, but it does sort of break ranks where the disability community is steadfast. We oppose these kinds of laws, but I know people who are individuals who are disabled some of them with long histories of activism who don’t agree with this position. I’m wondering what you’re finding out there. Is there a range of opinion on this issue in our community?

SD: Oh sure there is. For a while it was kind of stagnant. If anything, I see more moving our way, because first of all, some the things that we’ve been talking about in terms of expansion and the healthcare system have come through. I mean almost every state is looking at both federal and state cuts in support for living at home. Also for some basic medical care people who – and increasingly less financial support for people with durable medical equipment. So people are seeing that and, you know, wondering why the energy is gearing up for assisted suicide, and at the same time the things we need to live, the supports we need to live are increasing being threatened, but I won’t pretend the disability community is monolithic.

I mean, you could look at African American advocacy groups and almost everyone of them opposes the death penalty, but you won’t have to go far to find a minority of people in the African American community, especially who have experience being victims of violent crime, who support it.

AL: Well, one of the things DRLC does – they have a vibrant cancer support program – and I find the cancer community is more open to this kind of solution. Is that typical? Are there areas within our community where it’s more acceptable to have physician assisted suicide policies?
SD: Well sure, for people with specific diseases like cancer – it’s more common with people who have ALS, who have progressive conditions, and I’d say that people who’ve had their disabilities since birth are much more likely to be opposed to assisted suicide than people who’ve acquired their disabilities.

EY: Stephen, Stephen Drake, we’re actually starting to run out of time. We had other questions, but a couple of quickies. Do you know any other disability organization that are supporting physician assisted suicide?

SD: No I don’t. There was one that existed for years that was basically a handful of very well-to-do people with disabilities, but the founders died, Hugh Gallagher and Drew Batavia, and two years ago the last president of it died, and since then the organization itself died. Mostly, that organization was nothing more than just the people who were on the board of directors.

EY: OK, and the other thing is, and I have to emphasize that the program has a fine history from what we’ve been able to determine. I think we want to also support the workers in some way by having a program like this, but the other thing I wanted to ask you: Are you concerned – I’ve had this concern for a while about disability groups being taken over, their boards being taken over by corporate interests – do you folks at Not Dead Yet yourself think that what’s happening at Disability Rights Legal Center might be a start with a trend of some bad things to happen?

SD: Well, I think there’s always the danger that people need to look at. Most EDs and sitting boards are very aware of what they need to do to maintain the philosophy and integrity of their organization and work hard to do that in terms of enlistment. But when you have boards – and this is some of the national organizations – where you have a lot of very prominent people, it does make you steer away from some of the more controversial and edgier issues. If you want to maintain your freedom to pretty much go wherever you need to no matter how unpopular it is, you need to make sure you’ve got a solid majority on board. If you got people in for their status, people who are on the boards of multinational companies, they’re made uncomfortable very easily.

AL: No kidding. Well this segues into my plug for all of you. Consider getting on your local board. Consider being the one to make the decisions, select the hiring and firing, and make sure that our institutions stay healthy. I want to also tell you all that there are information about both our two boards linked on our website at PushingLimits.i941.net, and this is Adrienne Lauby and Eddy Ytuarte, and I have been speaking with Stephen Drake from Not Dead Yet. Thank you Stephen so much for coming.

SD: Thank you.

AL: I want to tell you all about a wonderful week-long event that’s coming starting next Thursday, March 26th. It’s the opening reception for the exhibit DIS/PLAY at the SOMarts cultural center. This exhibit is an uncommonly large and exceptional gathering of artists who work within the disability culture. It opens next Tuesday and runs through April 23rd at 934 Brannan Street between 8th and 9th streets in San Francisco. The opening reception next Thursday from 6 to 9 includes hands on art exploration and a 45 minute performance by the Comedians with Disabilities Act. On Wednesday, April 8th, there will be a performance by the Access Dance Company, and on the closing night, April 23, there will be film and poetry performances. The late Casper Banjo is one of the artists featured in this exhibit. As many of you know, Casper Banjo was killed by an Oakland police officer in 2008. This is a rare opportunity to see his work. All the events as well as the exhibit itself are free, but some need an advance RSVP. Everything is wheelchair ADA accessible, and ASL interpretation will be provided during each of the events. So I’m telling you this is 30 artists, 6 organizations who have set this groundbreaking, fascinating exhibit up for you, so there’s a link to the gallery – again our website PushingLimits.i941.net and the website for the exhibit is Somarts.org. And then one more thing next week in the North Bay social justice week at SSU. We hope to see some of you there at Sonoma State University. Thanks for listening.