Mission of Not Dead Yet

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hi everyone, welcome to the show. All of our listeners in the United States and around the world, you know, China has the largest listening audience of this show. And I just want to say to every country listening to the show that one person can make a difference. I— China, you are really, really awesome. You got to keep spreading the news to other people in China with disabilities because that's how we change the world. One person at a time. But thank you all so much, and a special shout out to my friends from the State Department. My good friend Richard Roberts, who by the way is also an esteemed author, and he is in Okinawa, and he is one of the first people I ever worked with years ago when I went to South Korea to speak across the country. He is a wonderful person on the radio show this past May, and they're going to be on again. I mean, you got to hear that show with Japan. Go back and look it up. Japan, you know, just go to, uh, subscribe to the show at Spotify or Apple, or go to my website, www.benderconsult.com. Radio show, and then all the guests are listed. It wasn't May. I'll get the exact month for you in a second, but they were on and they were awesome. Oh my God. And then in South Korea, Gang Young Cho, another great disability advocate. In Kazakhstan, Venyamin. Venyamin, another— these people all fight the fight for people with disabilities. And guess what? Sheryl Harris is in Tunisia. And can you get this? Next week, next Tuesday, Sheryl Harris from the U.S. Embassy in Tunisia will be on talking about people with disabilities, you know, and, and the fight for freedom in that country. So these are all great people. I love them all. They are all so awesome, uh, and Yoshiko.

Yoshiko.

I'm happy to tell you, Yoshiko Dart, that Japan's going to be on again. And we are really, really going to advertise that to all your friends in Japan. So, hi, Mark. You see how you're changing the world by sponsoring this radio show? Thank you so much. As a woman living with epilepsy and hard of hearing, everyone knows at Bender Consulting Services, I am on a crusade. To find employment for people with disabilities. And I'm also on a crusade for disability rights. And that is why I have, I love this woman, on my show today, Diane Coleman, the president and CEO of Not Dead Yet. I include them all the time because her work is so important. Diane, welcome back to the show.

Hi Joyce, it's great to be here again. Thanks for including us.

Of course. Um, and you know what, Diane, since we have people listening in the United States and around the world, you know, could you just tell everyone a little background about you, about Diane Coleman, and then what led you to found Not Dead Yet?

Well, I started out my career as a lawyer in a field not related to disability, but at that point I got connected with the Center for Independent Living in Los Angeles where I was living at the time, and I was just really impressed with their work, and then they invited me to start addressing with them some court cases that were coming up in the late '80s involving people with disabilities who were going to court to discontinue life-sustaining treatment. But when you found out what their issues were, there were Things like they were stuck in nursing homes and they really wanted to get out and get attendant services, but they couldn't. And so they said, well, then pull the plug. Or, you know, one woman had a miscarriage and a marriage breakup and things that, you know, would distress anybody, but society treated them totally differently. The newspapers, the courts, all that Oh, yeah, their lives are hopeless and helpless and meaningless and we should help them die. So, at that point, the disability community was fighting back. We did what we could, and it was my introduction to the issue that I'm working on full-time at this point. And then along came in the early '90s the infamous Dr. Jack Kevorkian, or Dr. Death. You know, many of your listeners might not have been aware of that, but he was a pathologist doctor in Michigan who just kind of got famous for, uh, developing a suicide machine and helping people commit suicide. And even though oftentimes the media would talk about them being terminal on their last days of life, ready to die, In fact, two-thirds of his body count were people with non-terminal disabilities but were struggling with whatever was going on in their life. And what we really learned from all that is that there's a kind of a mindset in the culture at large and in the medical system that people are better off dead than disabled.. And that's even though studies already at that time and since then show that, you know, usually people with disabilities don't see it that way, especially if they're getting the right support. So, that's kind of how this whole idea of we've got to fight back came up. And I actually started Not Dead Yet in 1996, because cases were going up to the U.S. Supreme Court, and we needed to really get busy to help steer those in the right direction.

Well, how did you do that, though? I mean, did you get people behind you with funding? I mean, how did you start Not Dead Yet?

Well, basically, I was at a conference and I'd been asked to testify in Congress, and I went to this conference right beforehand. It was a disability policy thing that Martha Bristow put on. She was, you know, at that time the head of the National Council on Disability. Was— I decided that the testimony would be stronger if I got people to sign on to it. So I went around the conference attendees and got a lot of signatures that I added to the testimony when I delivered it actually to the committee in Congress that I was testifying at. So that— on that very day that I was gathering the signatures, it started with Bob Kafka, who's one of the leaders in ADAPT, another disability group, saying, "I've got a name for your group out of Monty Python and the Holy Grail, you know, 'Not Dead Yet.'" And it sounded good, a little bite to it, you know. And so—

Figures that would be Bob Kafka.

Yeah, and that's kind of how it got started. And just from then, uh, you know, we had our first protests and things just, you know, built from there.

Yeah. Um, now what, what are you doing with Not Dead Yet today?

Well, you know, we have a blog So, we do a lot of public education. We do op-eds. We help other people do op-eds. Webinars occasionally, media interviews. So, that's kind of the public education side of it. We do community organizing where primarily, especially this time of year, we're engaging with disability advocates at the state level. So that they can help to stop assisted suicide bills that are pending in their own states. You know, and we also work on opposing the use of quality-adjusted life years measures for determining what treatments are good. I don't— you know, QALYs they're called. And as people may know, the National Council on Disability issued a number of policy papers on bioethics issues in and around November of 2019. So, there are lots of recommendations and things in those, and we're working on some of them ourselves. It's basically all trying to challenge this idea that, you know, our lives are not equally valuable. And then I would want to say that we also do what I'd call information and referral for individuals who call us. That's not frequent, but, you know, people find us on the web if they're in a critical situation with a relative in the hospital or something and everybody's saying, "Oh, we've got to pull the plug," and the people are kind of like really surprised because Maybe they knew their relative would not want that, even if they're unconscious, or sometimes they have an advanced directive that says they want to live, but the doctors want to pull the plug. And those are kind of things that happen from time to time. Uh, in fact, you know, this past summer there was a Black man named Michael Hickson in Texas who got COVID. He also had had a brain injury. And the hospital declined to treat his COVID because of his brain injury, basically. They said his quality of life was too low. And so he died because of that, with the withholding of treatment. And that kind of thing goes on. And people call us. Try to explain to them what the basic things are that they can do to try to challenge what is happening, which oftentimes basically means finding a volunteer lawyer.

Right. So, so where are you headquartered? Where are you, Diane?

We're in Rochester, New York.

Okay. And oh, not far from NTID. Correct. Which I'm on. So the next time I know I can get together with you. Um, that'd be great. Nag for them. So, uh, when the world comes back to normal, I'll be able to get together with you on a visit.

That'd be sweet.

Yeah. In the meantime, what, what then when someone asks me what your mission is, but also your major program, what would you say?

Well, public education and advocacy, both. Yeah, we try to get the word out about what's happening, what the issues are, how to analyze them, etc. And we try to get people on the individual level state by state engaged in fighting these issues, most of which play out in state law, not federal, which is why the organizing is so important.

And is your main mission of preventing, uh, euthanasia, or, you know, like what, what you were talking about with doctor death, you know, or hospitals telling people they should die, and assisted suicide. Is that your main thing you're fighting against?

Well, I wouldn't quite want to say it that way. We, we've always worked on the problem of involuntary withholding of life-sustaining treatment. In fact, those were those beginning cases. The guy says, "Get me out of this nursing home or pull the plug." That's involuntary treatment withholding from our point of view. It wasn't really voluntary, 'cause they gave them no choice, you know, be in a nursing home where it was really bad or die. So, we don't consider that a choice. And, um— So, we still— we're very worried about what's called futility policies, which are where the healthcare providers overrule a patient who wants to live and take away life-sustaining treatment. And we're also worried about where families might make decisions for their relatives who's deemed incompetent, whether they are or not, and if they have decision-making authority, then that person's life could be ended also without their consent, so by withholding treatment. So, we really work on a whole range of things that people often classify as end of life. Yeah, but we think that is so terrible, right?

Can they still do that today? I mean, could they still say to someone at a nursing home, either leave or, uh, you know, end your life? Could they say that? What happened in those other cases? Can they still do that?

Can they hold you in the nursing home against your will? Yes. Nowadays, no. Nowadays, anybody can refuse treatment and with very little consideration for what their reasons are. It's like there's no requirement to— if the guy says, I want to get out in the community and have attendant services, the system will not force the nursing home to do that. They won't force the state to do it unless advocates and lawyers get all involved. And at the same time, that person's life-sustaining treatment can be taken away because they said so, without regard to their reasons. And I think that's a problem if they aren't being offered a real choice. But the law is clear ever since 1990 that you pretty much have an absolute right if you are deemed competent to refuse any form of treatment you want. And we're not trying to change that per se. We're trying to get the healthcare system to say, but first, could we talk to you about why you want to die instead of just presuming that your desire to die is rational because you're disabled.

Yeah.

You know what— There's a great deal of superficiality to the whole thing.

Right. Yeah, what really is a frightful thought, but unfortunately I know this probably happens, is in certain areas of the United States, and it could be anywhere, but we're just gonna use any rural area or the South in a maybe impoverished area. How often do I think someone says that, you know, that they want out and they don't get out or that message is not conveyed? Do you know what I mean? Right.

I think it's a big concern and, you know, it is harder. It takes, you know, we work with, you know, I was in a Center for Independent Living that I was a director for a while of one that got people out of nursing homes. It's not simple. You have to put together a package of services and housing that is affordable and and accessible enough for that person. And those things take effort and the hospitals and nursing homes don't really seem to engage with that. They need outside help, so there you are.

People are stuck. There you are, often stuck. There you are in what I call a prison. There you are. Ah, this is why we all have to stick together and fight the fight Um, and two things I want to do. First, Diane, uh, how does someone make a contribution to Not Dead Yet?

Uh, contributions to Not Dead Yet can be made, um, to Center for Disability Rights as the payee and with a memo that says Not Dead Yet, and they can be sent to Uh, you know, the address— there's an address on our website.

Okay. And if you go directly to—

there's actually a donate— there's a donate page on our website. Yeah, there's an online donation method as well.

Yes. Okay. So if you go to notdeadyet.org, there's a donate page, a donate button, right? Okay. So if you're listening to the show, I know you're probably, oh my God, is this This is terrible, this is terrible, because when I talk about this, people are, "Oh no!" But you know what? Could be you, could be us, could be anyone, could be any of us. You want to help? Diane can't do it without money. No one can. So, you know, I would really request that— this is so important. That you go to notdeadyet.org and donate to them. I really would suggest you do that. And by the way, before I continue talking to Diane, September 22nd, 2020, September 22nd, 2020 is the day that I had— that it was the Japan show was played, September 22nd, 2020. You can go to my website and listen to that show, and it is awesome. That show is awesome with Mr. Sai and Mr. Kameya, and it had Richard Roberts on, and I'm sorry if I mispronounce one of those names, as I usually do, but listening to the show and the translations, it is just phenomenal. And listen next week with Cheryl Harris in Tunisia. You know why I asked for those donations, Diane? People really don't understand. It's hard to do anything without funding. And I was going to ask you, where do you get your funding?

I mean, it's all private donations. It's all private donations. Yeah. Um, so it's very meaningful. I appreciate you bringing that up.

Well, you know, people say you've got to make change. Can't make change without resources. So I am more than happy. NotDeadYet.org, go there. All right. Well, let's get right down to it. COVID. You mentioned that example, which was horrific, about Michael Hickson. I know exactly what you're talking about and how they would not treat him.

And of course, then he died from COVID I wanted to ask you, are you seeing this situation happen across the country with COVID You know, we don't have data, I guess you could say, but COVID has really exposed the high levels of disability and racial disparities in healthcare kind of brought a lot to light. You know, we were— disabled people were put at the back of the line for COVID treatment under many state policies. And, you know, it was so severely a problem that the U.S. Department of Health and Human Services Office for Civil Rights got formal complaints from a number of states and had to step in and clarify that all of the discrimination laws in the U.S. still apply. And you can't just say, "Oh, well, we're not going to treat anybody with Down syndrome." "Oh, we're not going to treat anybody with neuromuscular conditions," or whatever they were excluding. And so, that was, you know, really important to have that, you know, be brought to light. But more broadly, even beyond COVID, with these health disparities, if people are not getting the healthcare they need or the pain relief they need, whether it's from COVID or some other health issues, you know, that could lead them to feel that ending their lives and assisted suicide is their only option. And so, you know, really addressing these health disparities is an important part of our work, at least bringing them out to light.

Right. I mean, I could not believe it. That, uh, where was it, Seattle and Alabama, I can't remember all the states, but that they had, uh, the policy of if you had an intellectual disability that that person didn't— was not first in line for a ventilator or for treatment. And similar in Alabama. I mean, I could not believe it. Then of course, you know, I've had Sherrell Barber on my show, who's the daughter of Reverend Dr. William Barber, talking about racial racism, systemic racism, and how you saw this in healthcare disparity. But it's the same thing with people with disabilities. And of course, there's intersectionality where there are Black people with disabilities or brown people with disabilities. And it really sadly showed how this is. It's Marcy Roth, the CEO of WID, which I'm so honored to be on that board. When she was speaking, talked about how we are being slaughtered, and they said, "Who? Who do you mean?" She said, "People with disabilities all across America in these nursing homes with COVID." And people that are being, left out because they have a disability. And that is horrible but true. I mean, I'm sure you've seen that, Diane.

Well, you know, as both advocates and studies have always told us, nursing homes are death traps. But this, you know, new situation with COVID has made that problem, that injustice so much worse. I mean, obviously in New York, we're seeing that people were dumped into nursing homes and, you know, it just— COVID spread all over. And there are already problem environments with, you know, contagion, but hospitals were transferring people who had had COVID into nursing homes to make it even worse, it appears. And, you know, I've seen a few pro-assisted suicide articles suggesting that COVID is a reason to legalize assisted suicide, but I really think the opposite, because, you know, when you go back to looking at healthcare disparities based on disability, race, other marginalized folks, wouldn't that just— you know, would that just take discrimination to the ultimate level? Death, sending the social message that some people are expendable, or that they have a duty to die to provide resources for others. This is really not— it's so dangerous.

Oh, that's scary, isn't it? You know, I was going to ask you this later, but I'll talk about it now. Does this not remind you of euthanasia when you think about all that? You know, the Nazi version of people with disabilities are disposable. That's what it reminds me of. This whole, well, you know, this person doesn't deserve to live. I mean, isn't that a terrible thought, thinking that way?

Yeah, and you know what I would say right now is, you know, The United States is currently focused in these laws on the terminally ill, and they're looking at assisted suicide. And, you know, the data show that terminally ill people are also disabled. Either they were a long time, they had a chronic condition, or even they became disabled because of their terminal illness, not being able to get around as well and so forth. But, you know, other countries that are looking at this type of law change lean toward including eligibility for a broader range of people with disabilities. And, in fact, Canada is literally this week debating and voting on a bill that would expand their existing euthanasia law which is lethal injection law, to people not only with a broader range of disabilities, but in addition, they're going so far as to debating whether a person who has a mental health-related disability alone, without a physical something, would be eligible for active euthanasia.

Oh my God, that's terrible!

Shocking.

It's shocking. Oh my God. Oh, that is shocking.

Oh, that's terrible. It goes further than any other— it's not that it's never been debated or discussed over in some of the European countries, but it is like literally on the table in Parliament in Canada right now. And there's actually a disability group that's holding a, you know, some type of online website-based challenges to it to see if they can, you know, get some interest in getting some votes, you know, to make it not happen. But, you know, when you look at it really, you can see non-disabled people, you know, they fear becoming disabled and they think they want euthanasia for themselves. Someday before they get too disabled. And the message is really pretty clear that non-disabled people don't think we deserve the same suicide prevention as everybody else or that we deserve our concerns and needs to be addressed so that we don't feel that our lives being ended early is our only option.

Diane, this is shocking. This is hard to believe. Yeah, it is hard to believe. For our, for our listeners, how, how can they read or get information about that?

Um, I would suggest Uh, Not Dead Yet Canada is one possibility. I haven't looked it up on their site yet, but they're heavily engaged in this effort this week.

Okay, not, not, not dead yet. I'm sorry, go ahead.

Yeah, Not Dead Yet Canada, the Canadian Coalition on Disability. Um, I may not have that exactly right, but if you Google, you'll get to it. The Euthanasia Prevention Coalition is another group. And it really does take a lot of groups. No one group in the disability world, you know, it's a huge world, can handle this alone. It's going to have to be everybody coming together and seeing the common threat to our lives that, you know, is basically Steve, we're already through.

Yeah, I actually, I'm going to bring this up to the World Institute on Disability because this is, I mean, I just can't believe it. I mean, including people with mental health disabilities, that is so broad. What all are they talking about, do you think?

Well, hey, they're saying if that person feels they're suffering so much and our goal is to end suffering, then, you know, that's legitimate. That's what they're saying.

You know, you know what I hate? I hate everything about this. But you know what is amazing? When a— when you have a group of people that are viewed as, you know, which we all can be viewed as liberal or progressive. Why is it that a lot of people include this with that? I'll tell you why.

I know.

Because they don't include people with disabilities. Do you know what I mean? They aren't thinking that way. And that is, to me—

Hey.

Hey, Diane, you know what I say to people? I say, you wanna know, as you know, my life is I'm on a crusade to find competitive employment for people with disabilities. That's me. And, you know, and now we're a national company and we also have a software product. We sell iDisAbility that trains people at corporations how to work with and communicate to people with disabilities. And we, you know, in digital accessibility, we do all these things. The heart and soul of all of this is employment. Because we have double the unemployment rate and 70% of people with disabilities are still not counted in the workforce. So, here's what I say about that. You wonder why we can't get hired. Look at this. If that's the way they look at people with disabilities, as being disposable, even thinking that way, No wonder we can't get a job because of how people view people with disabilities. And I know it's not to that extreme, but the remnants of that, the theme of being weaker, you know, or not able to do the same, it goes back to all of this. I mean, I'm sorry to say that. Don't you think that? Yeah, yeah, yeah.

I'm sorry, the age factor.

Yeah, Diane, I did not know there were Not Dead Yet organizations in other parts of the world.

There are, uh, there have been some. Yes, there's the one in Canada, one in the UK, and one in New Zealand. And there are people who you know, have our point of view whether they identify as not dead yet or not in many other places, but it needs to spread. And, you know, especially in the places where this has become a political issue, which increasingly is so.

So how many are there altogether then?

Uh, we, we've had 4 groups that have formed, uh, you know, kind of officially, uh, Canada, UK, and New Zealand, and then of course the US.

Okay. And so is this all one organization then? Like, are you connected to all of them?

No, they're all, they're all autonomous.

They're all autonomous. Well, you are definitely the leader in all of this. You started it, and what a great thing you're doing. I mean, I just think so highly of you, Diane, and that you're fighting the fight for us. Because as I said, you know, just like COVID, what you said before, it really showed how people think. About things, you know? And that's why we all have to stick together and we all have to fight the fight together and we all have to financially support one another. Because wow, when I was reading your website, I read that story about Kate Hudson's husband and I was horrified. Would you mind sharing that story with our listeners.

Yeah, excuse me. Yeah, her husband went in to see the doctor and she waited in the hallway, and apparently the doctor told the husband that, you know, he could have assisted suicide because he was in a state where it's legal, and, uh, that would not be a burden to his wife, but he told his wife, and so that's how that story came out, which frankly, we think is a rare example to come to light, but we think it's the tip of the iceberg. And actually, it's the Disability Rights Education and Defense Fund that developed a compilation of all the stories that have that have come to light, as rare as that is, over the years that we're aware of. And that's on their website. They have a whole page dedicated to articles and information at— their website is dredf.org, Disability Rights Education and Defense Fund, their acronym. And, you know, we think this form of coercion, like coming from a medical person, it's a great concern. Even if the doctor just brings up the topic of assisted suicide, they're kind of sending a message, "Oh, this is a legitimate treatment and, you know, it could be appropriate for you as an individual." And how is a person who's ill, maybe having troubles, really gonna feel about having an authority figure like a doctor say something like that? I mean, I worry about people who aren't inclined to, you know, give their doctors a hard time when they need to, so. And unfortunately, the law doesn't really— although it says, you know, you shouldn't coerce, it doesn't really do anything to actually prevent that.

Oh, I mean, you know, that one thing you said, as you know, I mentioned earlier, I have epilepsy and I had an accident at a movie theater. I fell and hit my head so hard I fractured my skull. Ended up having a brain hemorrhage and life-saving brain surgery. But when I went to the doctor in my 20s and I said, listen, I'm having these strange fainting spells, and I described them— my husband and I described them— this doctor looked at me and said, oh, you're fine, it's just some female hormonal problem. Now when I look back on that, I'm thinking, what was wrong with me that I would believe that? What was wrong with me? I was in my 20s and I had that view of a doctor that you just said. The authority figure, you would know, you know, you're the doctor, you're gonna give me the right advice. And thinking about what they are saying in hospitals to people in that same situation is a really scary thought, Diane.

It is, it is, especially when we saw the recent research. Say that 82% of doctors think that people with disabilities have a lower quality of life than other people. I mean, the study that just came out the last couple months— I wish I could put it at my fingertips, but it got a lot of play in the disability community— and it just verifies years of studies that have gone on before about doctors' negative attitudes toward people with disabilities.

So, they feel— what is the percentage?

It was 82.

Oh my God.

Feeling that we have a lower quality of life.

Oh.

Yeah.

Wado isi, what I mean? That's what I mean about, and you wonder why we can't get a job. I mean, it is, people will never, I mean, how can it be? Here we are, 31 years after the ADA, and we still have not moved the needle on this employment. Now, I will say, the past 5 years, things have started to move. But surely not fast enough. And Lord knows what's it going to be like after the pandemic. I mean, that's a scary thought to me, what it's going to be like. Um, so Diane, I wanted to, um, ask you a question. Families— we're talking about doctors, but do families ever suggest this to a family member that it would be better off assisted suicide?

You know, we're very worried about that, because suppose a family member says, "You have to request lethal drugs," so we'll have them on HAD, or else, you know, "We're really going to have to put you in a nursing home." Now, a few of the assisted suicide laws in the U.S. There's less than 10 at this point, but, um, they prohibit coercion and some provide penalties for coercing. But in practical terms, the primary witness to somebody saying that, the family member, that witness is dead. So how are you going to prove in a court of law that they Coerced. I mean, is somebody going to go out and do it in the bold, you know, boldly in the public where other people could record it or hear it or testify to it? No, they're not stupid. So basically, this is a kind of wrongdoing, the coercion, that cannot be prevented just by waving a magic wand. And that's one reason that assisted suicide needs to be illegal.

Yes, right, it needs to be illegal is right. I think I— you were talking about, uh, Marca. I remember, uh, I still remember when she called me after Million Dollar Baby came out. And said, oh my God, Joyce, I don't want anyone— you know, we've got to boycott this movie. We've got to do something about this movie. Because as you know, at the end, this boxer, now that she has a significant disability, asks her coach, played by Clint Eastwood, to end her life, you know, assisted suicide. And all that did is, of course, give people the idea that, "Oh, that's what you do," and, "Oh yeah, that's what you should do." And, Marca said, "Do you know how many people, when they first wake up from an accident like Marca's, where she had quadriplegia, do you know how many people wake up and say to themselves, 'I want to die. I just want to die'?" And then, a few weeks later, no, they really don't want to die. And she'll call them and say, "Remember when we thought that? Well, here's the problem." is people coercing you and saying, yes, I understand your life will not be the same, which now won't be the same. It could be better. It won't be the same, but that doesn't mean— not the same doesn't mean to end your life. Do you know what I mean, Diane?

I know. And that's one very big reason, for example, why United Spinal Association, the big national group that works on behalf of people with spinal cord injuries has been with us for years on this issue because they know what the consequences would be in those early phases. You know, it's definitely a terrible danger to our community to not give people the chance to work it through.

Oh yeah, and I have friends, the family, that they told me their family said, you know, do you want to continue on? I mean, I could not believe, because then the question is, that's because that's how you view disability, and that's how you view, oh my God, I'd have to help take care of this person, right?

And I think we, you know, that does happen, and it's really sad. But to get, you know, because as it is when people are initially spinal cord injured, they can often be depending on life-sustaining treatment and all you got to do is pull the plug, whichever it may be. And so, it matters 100% who your doctors are and who your family are. And what they're going to say in terms of encouraging a person to work through things and not leap to that despair.

Yeah, because, you know, just as you said, there's no recording of hearing what a doctor or family member says to someone in that same situation. Right. And then we have Down syndrome, where people even were saying that with an intellectual disability that they weren't the same and the quality of life was not the same and they didn't deserve to live. I mean, they're, you know, I'm not trying to be, uh, you know, if you're listening to this show, you're probably thinking, oh my God, this is terrible. But if we don't shine a light on it, then how are you all going to know about this? You won't. So yes, it is a very sad topic, but it's also reality. I'm sure that people don't like to hear about it, but Diane, don't you agree if we don't speak up, it won't change?

Absolutely. And in fact, we need to. I mean, we need to look at this as as fighting for our lives by asserting that our lives are valuable, that part of it is a positive message. And calling out discrimination whenever we can to, again, deliver the message. We want our lives and we don't— you know, we want to fight the discrimination that denies us equal opportunity and our role and our place in society.

Yeah, right. Equality, value, and that we do want quality of life and that we are people that, you know, are successful and can do what other people do that do not have disabilities and sometimes much better. So, you know, we've got it, We've got to be positive about ourself. I always tell people, I'm living with epilepsy, but I'm not ashamed I'm living with epilepsy. And no matter what your disability, you should never be ashamed that you have a disability. And often it is, of course, able-bodied people that make you feel like that. I want to say again, Diane, what can— two things. Number one, What can our listeners do to speak out and, you know, speak up about all of this?

Well, I would encourage people to, you know, speak out through media, letters to the editor, all the kinds of things that people can do, op-eds if they'd like, and, you know, ways that we can communicate the message that we're not better off dead than disabled. And, you know, there's so many issues that we have to fight for in the disability community, but I just hope that people will decide to add this to their priorities because it is really becoming a steamroller that we have to push back on.

Yeah. Yeah. And I know what else you can do. You can go to notdeadyet.org and you can make a contribution today. Through going to the website, you also can keep in touch with Diane, you know, to know what's going on, or if there's something you need her to know, you can reach her through that website, the Contact Us.

Diane, I want to— They can also subscribe to the blog.

Oh, okay, you can subscribe to the blog at notdeadyet.org. Okay, make sure you all do that. Diane, I want to tell you, as I know you already know, I think so highly of you. Because you're out there fighting darkness. You're out there fighting for all of us with disabilities, and I just— to me, you're a real champion, and I thank you so much for what you're doing.

Thanks so much for your time today, Joyce. I really appreciate all your support.

Well, Diane, we end every show first asking What message do you have for our listeners from the guest? Do you have a message for us?

Well, we're not better off dead than disabled. Society's not better off without us. Our path to death is being streamlined as we speak in the law around the country and around the world. And so I hope that people will Become engaged with us. Go to our site. Go to the Disability Rights Education and Defense Fund site and become informed and get involved in whatever way fits for you.

That's right. Get involved. And you know, if you're listening to this show right now and you're thinking, oh my God, I have all these other people, I want them to hear it, remember it's on demand. So you can go to voiceamerica.com. You can go to Apple or Spotify and subscribe. To my radio show, Disability Matters with Joyce Bender, on voiceamerica.com so you can share the podcast. Diane, make sure you put this podcast on your website so people can hear you talking about all of this. And we end every show with a quote, and here's the quote today: "Assisted suicide is not a benefit, it's a threat," said Diane Coleman. This is Joyce Bender, America's Voice, where disability matters, at voiceamerica.com. Join us all next week to hear Cheryl Harris from Tunisia. Talk to you then.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 2 PM Eastern time for another installment of Disability Matters right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.