President of Not Dead Yet
September 8, 2015 -
2:00pm to 3:00pm

Joyce welcomes Diane Coleman, the president of Not Dead Yet, a national disability rights group which she founded in 1996 to give voice to disability rights opposition to legalization of assisted suicide and euthanasia.   She will discuss the mission of this organization in depth, as well as her testimony that she has given four times before Subcommittees of the U.S. House of Representatives and Senate. She is a well-known writer and speaker on assisted suicide and euthanasia topics.

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Transcript

EDITED FILE

"DISABILITY MATTERS"

SEPTEMBER 8, 2015

1:00 P.M. CST

 

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This is being provided in a rough‑draft format.  Communication Access Real-time Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

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

   >> JOYCE BENDER:  Hey welcome to the show, everyone.  I hope you had a great Labor Day weekend.  And I want to send a special shout out to my close friend, Yoshiko Dart.  Keep leading on, keep leading on.  Talking about leading on, that's what I feel our next guest does every day of her life and every year I think I have got to have her on this show.  Because even if our community I often ‑‑ I don't think that enough people understand the work of Not Dead Yet and also what we are facing, what the disability community is facing.  So it is always, always an honor for me to have Diane Coleman as my guest.  Diane, welcome to the show. 

   >> DIANE COLEMAN:  Oh, thank you, Joyce, for those kind words and for giving me the chance to speak with your listeners. 

   >> JOYCE BENDER:  Absolutely.  Well, let's start with Not Dead Yet, and by the way, Diane, I have to tell you that I have a Not Dead Yet button in my office that I have had for years because this is just so important to me, but I have read a lot about this and I am wondering if one of your decisions to found Not Dead Yet is based on disability history, and what I'm talking about is when people were wanting to leave nursing homes with this "give me liberty or give me death" message and I doubt that people thought that our society would prefer to say no to freedom but yes to dying.  But that is, in fact, what happened.  So was that one of the things that impacted you? 

   >> DIANE COLEMAN:  Yes, absolutely.  In the '80s there were several cases that went through the court involving young men who were quadriplegics and were in nursing facilities and they were stuck or they feared winding up in nursing facilities.  Some of them said they want to get out of the facility or else pull the plug.  Case after case the courts painstakingly analyzed how the state of preserving life and preventing suicide did not apply to these men and never questioned their involuntary confinement in nursing facilities.  Now there was only one case, that of Larry MacAfee where the disability advocates in Atlanta, including Mark Johnson who himself is a quadriplegic and they intervened and made sure that Mr. MacAfee could get out of the nursing facility and in to community living. 
    So otherwise in case after case the person was granted their, you know, so‑called right to die and they did die.  And there were a lot of bioethicists that wrote about this, but they always leave out what the real issue was of getting liberty from nursing facilities until eventually one of the bioethicists that was involved actually wrote an apology in a magazine about ignoring the disability community input.  But it was really too little too late.  We don't oppose right to refuse treatment.  I am not saying that but there was a lot of pressure on these men.  It really was coercion and not choice and it is still a lot of the ways it is with really no protection in terms of ensuring real informed consent or real enforcement of the right to get out of nursing facilities. 

   >> JOYCE BENDER:  You know, and that is just terrible.  It is just horrible.  So getting, you know, back to this, I know that that still goes on today. 

   >> DIANE COLEMAN:  Yes.  Absolutely. 

   >> JOYCE BENDER:  So what is the mission of Not Dead Yet?  And everyone please go to notdeadyet.org and read about this organization and make a contribution, because trust me this could impact you or a loved one in your life.  Diane, what is the mission of Not Dead Yet? 

   >> DIANE COLEMAN:  We are a national grassroots disability rights group that opposes the legalization of assisted suicide and euthanasia, of deadly forms of discrimination against old, ill and disabled people.  And we help organize and articulate opposition to these practices based on secular social justice arguments.  And we work to ensure that the withholding or withdrawal of life sustaining medical treatment is truly voluntary.  And we demand also the equal protection of the law in terms of law enforcement when people are killed and their killings are classified as mercy killings because their lives are seen as worthless than other people's.  So we demand equal protection of the law.  Those are the things that we work on. 

   >> JOYCE BENDER:  Well, you know, there is so many things you do and there is so much we could talk about, but I want to start with assisted suicide.  Now I'm sure you have heard this, but even when I have talked about it to people, you know, they will say well, Joyce, you know, this person is in pain and suffering.  And this is best for them.  I am sure you have heard that.  And how do you counteract that? 

   >> DIANE COLEMAN:  Well, September is actually National Suicide Prevention Month.  And a big part of what we are saying is that people who say they want to take an action to end their lives should be treated equally and receive suicide prevention that genuinely addresses the concerns they face, including pain relief and not a streamlined path to suicide for some people.  Whatever the issue, even if the person is terminally ill, their issue can and should be addressed.  A big problem with assisted suicide is that it gives doctors the power to discriminate between people who ask for assisted suicide so some people get suicide prevention and others get suicide assistance and the different doctor's opinion about the person's health and disability and what can be seen in the statistics from Oregon where assisted suicide is legal is that people who are not actually terminal are getting lethal prescriptions and the reasons they give for wanting assisted suicide whether they are terminal or not are mostly psychological and social.  Like feeling they have lost their dignity or feeling that they are a burden on others.  And we are also concerned about the mistakes, the coercion and the abuse that have been documented in some of the Oregon cases.  The deadly mix with the profit driven cost cutting health care system where assisted suicide is the cheapest thing that can be done.  The prevalence of elder and disability abuse by families and caregivers and other factors that make legalizing assisted suicide so dangerous. 

   >> JOYCE BENDER:  Well, yes, because ‑‑ yeah, let's point out the mental health issues.  This would be ‑‑

   >> DIANE COLEMAN:  Absolutely.  There are people with some documented mental health histories who are still getting lethal prescriptions.  You can be depressed and you can have treatable depression and still get a lethal prescription the way these laws are written because of the standards that are employed by, you know, the doctors who are deciding who is eligible. 

   >> JOYCE BENDER:  Yeah.  Well, let's use that example right there.  If this person was not in ‑‑ let's just say the person has had a serious injury or whatever it is, and they just feel as you said it is not worth living.  Okay.  In the hospital this is okay, because it is assisted suicide.  But if they themselves would submit suicide everyone would be saying how terrible was that and we wish we could have done something to help them. 

   >> DIANE COLEMAN:  Yeah.  We are very concerned about the impact of these assisted suicide laws on people who are newly injured or newly ill.  Maybe they have had a stroke.  If assisted suicide becomes a routine medical treatment option, I wonder how many more of Tim Bauer's cases we might see.  Tim Bauer was the hunter who fell from a tree stand about a year ago and he was awakened from an induced coma for the first time from his injury and told he would not be able to hold the baby his wife was expecting, and he declined medical treatment one day in to his injury which killed him. 

   >> JOYCE BENDER:  Isn't that terrible? 

   >> DIANE COLEMAN:  Assisted suicide laws don't require people to accept medical treatment.  They can't require that under national laws, Supreme Court decisions, et cetera.  So a lot of people would be classified as terminal if they didn't get treatment.  They would die within six months.  That means they are classified as terminal.  So with all the better disabled philosophy that's out there in the general society, thousands of people with disabling injuries could be at risk every year.  It is a big worry. 

   >> JOYCE BENDER:  Yeah, and you know what else and we will talk about this more when we come back after the break.  But if a person goes in tears to their specialist, their doctor in the hospital, and says oh, you know, this is so terrible.  What this person is going through and right now they don't even want to live.  How do we not know this person would influence that person and say yes, that's a good idea?  Versus no, let's get suicide prevention as you say or no, let's get social workers in here that know people with disabilities that have survived and could talk to them about that.  You have to wonder the influence of a doctor when you ‑‑ when I have heard people say well, there is no point of them living.  Their life would be terrible.  You know what I mean? 

   >> DIANE COLEMAN:  Yes.  There is a lot of prejudice in the medical profession against life with a disability.  Almost more so than maybe the general public even.  Maybe that's because they see us at our most difficult times, right.  That's when we go to the doctor when we are having trouble.  It is giving them a very jaded and negative point of view in so many cases.  Not all by any means.  We all have some good doctors but there is also some very bad ones out there that say these kind of things to people and they have got, you know, the authority of a doctor, it influences what people do. 

   >> JOYCE BENDER:  Uh‑huh.  Yeah.  Well, we are going to talk to Diane more when we come back from break.  I want to urge you to go to the website notdeadyet.org.  Read it.  Read examples.  Read stories.  I'm telling you won't be the same and take time to make a donation.  We'll be right back after break with Diane.  This is Joyce Bender, America's voice where disability matters at voiceAmerica.com.  Don't go away.  We will be right back. 

  

       >> If you have a question or comment, call toll free at 1‑866‑472‑5788.  Now please welcome back, the host of "Disability Matters."  Here's Joyce Bender.

   >> JOYCE BENDER:  Hey welcome back to the show, everyone.  We are talking today to Diane Coleman, the founder and president of Not Dead Yet.  And before we go any further I think we have a caller on the line.  John, are you on the line? 

   >> John:  Hello. 

   >> JOYCE BENDER:  Hi John.  How are you? 

   >> John:  Good.  Hi. 

   >> JOYCE BENDER:  John Kelley, right? 

   >> John:  That's right.

   >> JOYCE BENDER:  Okay.  And John before ‑‑

   >> John:  Let me just mute the line. 

   >> JOYCE BENDER:  Go ahead.  You have a question or a comment.

   >> John:  I'm sorry, Joyce.  I am calling in about the fact that this is suicide prevention week and in two days it is world suicide prevention day and yet the California assembly leadership is right now ramming through an assisted suicide bill with blanket immunity for doctors who act badly and depressed people especially will be put in immediate danger.  And assisted suicide is suicide promotion, not prevention.  Thank you. 

   >> JOYCE BENDER:  Diane, do you have anything to say about that?  

   >> DIANE COLEMAN:  Well, I'd really like to add when the regular legislative session in the assembly in California was happening, both of the committees that addressed the bill defeated it on a bipartisan basis.  And then the California legislature had to go in to their special session to deal with the Medi‑Cal budget which is the state Medicaid program.  So at the same time that they are talking about Medicaid budget issues they have decided to ram through frankly it should be unrelated assisted suicide bill through committees that don't have the same structure and opposition and rules that the regular committees do and they are ‑‑ we are scared they are going to actually pull this off because it is such an end run around the regular processes in the California legislature, even the governor has criticized the approach they are taking but it is, you know, vote is today or tomorrow in the assembly and we are very concerned. 

   >> JOYCE BENDER:  Is that like tagged on to the Medi‑Cal?  Is that like how it is?  Is it like hidden with that? 

   >> DIANE COLEMAN:  I honestly don't know the rule structure.  In fact, some of the people dealing with it is saying it is so complex and unusual.  John may know more because he has been reading some of the direct materials coming out of that battle.

   >> JOYCE BENDER:  John, are you still on the line? 

   >> John:  Yeah, I am.

   >> JOYCE BENDER:  What do you know about that? 

   >> John:  I know it is pure power politics that the assembly leadership had adopted an amendment that would put at least some post death restrictions on doctors, perhaps the possibility of justice and it was going to, you know, have the standard stuff about negligence and wanton misconduct and gross negligence and the California Medi‑Cal Association threatened the assembly publicly that it would have to oppose any bill with any liability because it would lead to frivolous lawsuits.  And so the assembly caved and put in some Mealy‑Mouth provision about Medi‑Cal boards doing disciplining and we know how much ‑‑ how little trust we now have for institutions policing themselves. 

   >> JOYCE BENDER:  Wow, that is terrible.  You mean is there anything that our listeners can do?  Is it too late?  What is the answer to that? 

   >> John:  Well, I think one thing would be social media.  If people are in California call your legislators.  There is also people to call.  I mean people to e‑mail and Tweet at the Second Thoughts website, second‑thoughts.org and if people can get phone numbers that would be great because aides will take the message. 

   >> DIANE COLEMAN:  I really want to add so that, you know, that California is a major state in terms of influencing the public policy of other states.  That's always been true.  I mean when I went to law school back in the '80s they were talking about that and it has always been a big issue.  So the impact of a bill passing there for assisted suicide is something that everyone across the country should worry about.  And you can go to social media.  There has been activity on Not Dead Yet's Twitter as well as Second Thoughts where some of the legislators who may not be locked in to their positions can still be contacted with important information that could make a difference. 

   (Talking at the same time).

   >> JOYCE BENDER:  No.  Go ahead. 

   >> DIANE COLEMAN:  I was saying that John has been really helpful in getting the word out.  So I would encourage people to go to second‑thoughts.org for the Twitter handles and facts ‑‑ I mean the e‑mail addresses of some of those legislators who really need to hear from people. 

   >> John:  And, Diane and Joyce, I would just add that in the states that the law has been passed in, the states are very white and it turns out that upwards of 97% of participants have been white and this is a bill pushed by more well to do whiter, more secular and educated group of people.  And people of color oppose this strongly, less advantaged whites also.  There is a real class worth there element to these bills in that the immediate benefit may go to people who think that dignity is something that you could lose if you lose your ability.  But the rest of the society believes that dignity is inherent.  You don't lose it and that everyone deserves respect.  And the reason that the bill was ‑‑ the ballot amendment in 2012 was defeated, was because of the strong turnout of people of color. 

   >> JOYCE BENDER:  Okay.  Okay.  Let me say this, don't think it doesn't matter when you call in.  Every call makes a difference.  So if you are in California and are listening to this show, do what Diane and John have said, make that call.  Make it now.  Make it now.  Make that call because it will make a difference.  And John, thank you for calling in. 

   >> John:  Thank you. 

   >> JOYCE BENDER:  All right.  Actually Diane, I think we have another caller on the line.  Is Megan on the line? 

   >> Megan:  Hello. 

   >> JOYCE BENDER:  Hey.  Is this Megan? 

   >> Megan:  Yes, this is Megan. 

   >> JOYCE BENDER:  Hi Megan.  How are you? 

   >> Megan:  I'm good.  I was just calling in to express my support for Diane and John in their efforts to help defeat the bill and also to our colleagues in California.  And I wanted to express something as a disabilities studies scholar, several disabilities studies scholars have written many treatises against this practice in regards to acts of race and disability in America.  I remember one time I was at a meeting of the SDF, the Society for Disability Studies and somebody remarked they were an atheist.  And if there was an afterlife they didn't think that Jack Kevorkian was enjoying it.  And everyone laughed.  I'm sure that the authors of this bill have all the best intentions in the world but their understanding of the justice system is privileged.  I really don't think they grasp the fact that people are coerced in to doing things and that laws are negated by maneuvering all the time and think it is because they haven't experienced that and they haven't been disabled and they don't recognize the gray lines between the two, between disabled and terminally ill.  I mean some of the things that they say about, you know, loss of bodily functions.  I had severe clinical depression.  I remember one time that sadly I ended up lying in my own menstrual blood for days because I couldn't get out of bed.  The message that they are sending about disability is clear, even if they frame it in terms of terminal illness.  And I just wanted to say that. 

   >> JOYCE BENDER:  Wow.  Well, I am really glad you called in.  Where are you from? 

   >> Megan:  I'm from Massachusetts and I'm helping the Autistic Advocacy Network. 

   >> JOYCE BENDER:  What is your full name again? 

   >> Megan:  Megan Schroeder. 

   >> JOYCE BENDER:  Megan, I am really glad you called because wow, I just think that everything you said was so powerful.  And Diane, do you want to make a comment on anything that she said? 

   >> DIANE COLEMAN:  Oh, I really agree and I think that bringing the disability studies community in to the light is a very important way to communicate about, you know, the history of oppression of people with disabilities, cross disability community realities about that and that we can all work together to try to defeat this legislation.  And I have seen that you have done some really great grassroots work in getting the word out to the community, especially the autistic community and that's been so meaningful in the struggle. 

   >> Megan:  Oh, you are welcome. 

   >> JOYCE BENDER:  You know what, Megan, when you were talking about this, my good friend Edwin Black wrote the book the War Against the Weak because his parents survived the Holocaust.  And when I hear you talking about this and Diane, you know, there is a definite correlation to what happened with people with disabilities as a result of eugenics in the United States was then absolutely terribly magnified in Nazi Germany, but it was people with disabilities who were exterminated first. 

   >> Megan:  I did want to say something about that.  All of that is true, but I think we can communicate our point even without referencing that historical event.  Like it is fine to talk about it amongst ourselves, but because that history is generally not taught in schools, people don't understand the correlation.  And it sounds like hysteria even though it is not.  I encourage people when they call in not to talk about Nazis and not to talk about eugenics but to talk about systemic oppression.  Right now we live in a systemically unjust society.  We have systemic racism and ableism and systemic classism.  And that's what happened to Barbara Wagner when she was denied Medi‑Cal coverage for her chemotherapy and offered assisted suicide, Barbara, the director of Compassionate Choices, wrote in the newspaper after she was dead saying that she was foolish and she should have chosen palliative care instead and that might seem to some people like sound advice, except if you think about Barbara makes over $200,000 a year and will never need Medicaid and there is a definite classism going on that is oppressive. 

Another thing is the CNC has used a tool of privilege and oppression when they go and try to explain away things like Barbara Wagner, liking saying oh, well, she shouldn't have done it.  It wasn't experimental treatment but it was.  That's what oppressors do.  They always try to hystericize something that was really bad.  So yeah, I would just encourage people to focus more on the here and now and not on the Nazis, even though all of that's true but I think it is more helpful to think about the Nazi thing as a microcosm within someone's own life.  They may not make it a law that everyone has to kill themselves who is disabled but by being systematically disadvantaged that people are placed in a situation where death is given before they need ‑‑ what they need to live and it is not just.  That's just my thoughts. 

   >> JOYCE BENDER:  I think that's a good point.  Although as I said, you know, it was true and I do think there are correlations, but why that point is so true is that just as you said, you know, you don't want people to think either that it was a just then.  That this one horrible thing happened just then.  Because then, you know, your point is it systemic which means it is ongoing and it is ongoing to today.  That's a good point.  And as I tell you, Megan, call in any time. 

   >> Megan:  No problem.  I will.  It sounds fun. 

   >> JOYCE BENDER:  All right.  You have a good day.

   >> Megan:  You, too.  Bye Diane and you as well.  What's your name, the host? 

   >> JOYCE BENDER:  Pardon me?  

   >> Megan:  Bye‑bye. 

   >> JOYCE BENDER:  Bye‑bye.  You know what, you had some really good callers here because I think those were really good points, Diane. 

   >> DIANE COLEMAN:  Yes, I agree. 

   >> JOYCE BENDER:  And I am going to go back to something that you and someone else just talked about, I can remember when Marca Bristo called me and she was so upset because she had just seen Million Dollar Baby and when I ‑‑ which, of course, is the show showing this boxer or female boxer who becomes so successful and then after a terrible accident has quadriplegia and asks to die.  And the person played ironically by Clint Eastwood does what he wants.  And I remember Marca saying to me, hey no one is happy when they first wake up from having a serious injury.  But then after the shock and as time goes on you don't want to die.  Because you can live a full, happy life.  And, you know, I just wondered if you wanted to comment on that. 

   >> DIANE COLEMAN:  Just a little while ago on our call here we talked about a real life case of Tim Bauer, the hunter who was in a tree stand and fell from it and was awakened, you know, one day after his injury and given a very negative depiction of what his life would be like.  You will never hold your baby that was expected soon and he, you know, allegedly made the choice but it seemed like pressure to us to decline treatment.  And that killed him.  A lot of ‑‑

   >> JOYCE BENDER:  That was also not true what he was told. 

   >> DIANE COLEMAN:  Right, it wasn't.  He was definitely steered in a certain direction with the feeling you got from the news coverage.  I mean that's all we know.  We aren't part of the private, you know, communications but what came through in the news coverage of the quotes from the people who spoke with him were, you know, very, very negatively biased life with disability and that is something that, you know, feeds the whole society is conveying those kinds of anti‑disability, better dead than disabled messages throughout people's lives.  So when they acquire a disability, you know, their first impressions are going to be I can't do this.  And they ‑‑ and if they are given assisted suicide right away or refused treatment right away resulting in their death, either way they've lost the chance to find out the real realities of living with a disability.  And the fact that society is getting quicker about saying that and less committed to providing the supports that, you know, I saw people get 30 years ago if they were injured.  It is very scary to think of the lives that are likely being lost right now for reasons like this.  It is all decision making behind closed doors.  We don't get to see it, but I fear that it is happening more and more.  And that's very concerning. 

   >> JOYCE BENDER:  Well, yeah, right to that point.  We will just go to this point right now and I have heard this, I have heard Medi‑Cal professionals say oh, they are going to end up living their life on a ventilator or you know what, we have a feeding tube.  I mean this is how it is going to be.  This is how their life would be.  Well, guess what, I know people with disabilities who live very active lives using a ventilator.  Do you know what I mean?  I'm saying I think it is how this is presented to people by Medi‑Cal professionals.

   >> DIANE COLEMAN:  Yes. 

   >> JOYCE BENDER:  And using these terms in a very negative fashion and then I think about my close friend Josie Badger who was Ms. Wheelchair America and has a Ph.D. and is a national advocate with a ventilator.  I don't think that properly in these cases explained which leads me to explaining to our listeners, I know you talked about this on your website, surrogate decision makers. 

   >> DIANE COLEMAN:  That's a very important topic area.  Surrogate decision makers who are authorized to make health care advocates ‑‑ that can happen, they are unconscious after an injury.  That would often be the case.  And it can happen for other reasons, too.  What we think is that it is best for people to appoint someone they trust as their health care proxy which you can do in a simple document in case they ever need one.  And then they should tell that person what their wishes would be.  So in a situation that might arise they have got at least the protection of a person they trust advocating for them and having the legal authority to make decisions.  But, you know, any surrogate whether they are appointed by the person or other kinds that are appointed by law are supposed to try to make the decision that the person would want.  But they really need the person's input before a crisis occurs.  And sometimes they may not be making the decision the person would want but just make a decision based on their own prejudices.  And, you know, a big concern that we have had with some of the cases is that some surrogates even go so far as to even want to end the person's life without any clear evidence of what the person would want.  They just make a negative quality of life judgment and maybe based on all the disability prejudice in society out there, and, you know, I'm glad to be able to say at least that in some cases the attorneys at the ‑‑ in the protection and advocacy system, which every state has a protection and advocacy agency, sometimes they found out about cases and have gone in to court and been able to save the life of a disabled person just by fighting the case.  They have been able to stop a surrogate from doing something that is obviously not, you know, supported by law, but if, you know, nobody challenges them they get away with it.  And so in some of these cases they have succeeded in saving a person's life.  And we filed for end of the court briefs in cases supporting the PNAs doing that and in some other kinds of cases that have come up but, you know, sadly I would say most of this occurs behind closed doors and we never hear about it, which is a big worry. 

   >> JOYCE BENDER:  Right.  Yeah, because this could be a person that's had an injury and possibly they are not thinking straightly or they have Alzheimer's or whatever.  That is a really serious thing.  So if you are listening to the show, think about that.  Think about that.  Take it seriously and go to notdeadyet.org and go to the website and read about this because you need to think about it before you yourself are in that situation. 
    Which leads me to talking about ethic boards.  I noticed reading your material, Diane, that there aren't a lot of people or there aren't any people with disabilities on many of these boards.  Is that correct? 

   >> DIANE COLEMAN:  That's what we hear.  And I can't say I have got statistics about it.  But ‑‑ and I have talked to a few just incidentally where they have said yes, we have somebody but for the most part no.  Some states have statutes that say who would be on ethics committees at hospitals and they'll include, you know, the lawyers, the doctors, the, you know, religious leaders or whatever, but it doesn't ever mention people with disabilities or disability advocates who frankly I mean I think this is really a nothing about doubt us without kind of situation.  Because the fact is that the decisions, a lot of the health care decisions that are made are directly on this issue of do you want to have life saving or life sustaining treatment even though you will live with a disability or do you want to die.  I mean that really is what is being decided.  And to have ethics committees giving people guidance about these decisions or even on behalf of a hospital making a rule when a family and doctors are in dispute, it is terrible that they are not including us, you know, nothing about us without us and there it is.  It is happening all over the place.  So it really is important for us to try to fix that and get involved. 

   >> JOYCE BENDER:  Yeah, I think you said it all, with a nothing about us without us.  I think that says it all in this case.  And once again go to the website notdeadyet.org read about this.  Educate yourself.  One mistake you make in the disability community is when we just assume okay, things are going to move along and we don't take time to research these issues.  You know, you need to do that.  You need to take time.  Well, Diane, as you know before the show started someone that I talk about frequently is Peter Singer, the bioethicist at Princeton University that since I remember has had a terrible view about people with disabilities including infants, killing infants with disabilities.  And now I know he is on to this limiting lives because of insurance reasons and cost.  And here is what I always ask people, why does Princeton keep him? What's the answer to that? 

   >> DIANE COLEMAN:  Well, I would have to start out with they invited him and they didn't ‑‑ they knew at the time when they brought him in 1999 as the chair of their bioethics some honored chair they knew exactly what his positions were.  So they deliberately selected him and, you know, made that commitment and at that time Not Dead Yet led a very large, like 200 people demonstration against the hiring targeting Princeton itself for making that decision and calling on them to reverse it.  And, you know, they didn't.  At the same time one of their trustees at Princeton was Steve Forbes, i.e., the guy with money that he gave to Princeton.  And he took ‑‑ he resigned from the trusteeship and took his money with him.  And that wasn't enough to convince them.  So they are really wrapped in to this decision and it is very, very disturbing that he is, in fact, you know, educating people who are in this important Ivy League type school, influencing what their thinking on these ethics issues would be.  This year because of these new comments that he was making about, you know, even further out there about killing disabled babies and the New York Times article they did about, you know, a person with quadriplegia is only half a person, their quality of high is half that of a nondisabled person and that should influence our insurance and coverage decisions. 

We put out a change.org petition and called on Princeton to at least denounce Singer's comments and, you know, we want Princeton to fire him.  But at a minimum they need to hire a qualified person with a disability to ‑‑ as a professor at an equal level to be a counter voice to what he is saying.  And so far we get, you know ‑‑ we don't have any positive to that.  And in fact, this week on the 10th a group, Not Dead Yet Pennsylvania group plus the Centers for Independent Living in New Jersey are going to be conducting an additional demonstration and call to action in Trenton, New Jersey.  Hopefully you will be seeing some coverage of that. 

   >> JOYCE BENDER:  Just so our listeners understand this, this Peter Singer is a professor, a bioethicist at Princeton University.  I want to make sure that you understand what he is saying.  Am I correct that he is saying that infants with disabilities should be killed? 

   >> DIANE COLEMAN:  Close to that.  I mean I'd have to go back to the exact content.  But what he ‑‑ what he used to say was that the parents should have the choice to end the life of a disabled infant, you know, for their happiness and greater good if they choose it.  But in more recent times he's ‑‑ his rhetoric is leaning more towards well, it should happen.  It is more embracing of that concept.  Although I think that he might still say well, you know, if the parents really want, you know, that baby, okay.  But, you know, then he is going to raise the question well, should the health care system or the insurance, you know, industry have to pay for that.  So it is really disturbing concepts.

   >> JOYCE BENDER:  Let me understand this.  By an infant he is meaning after a baby is born or what is he meaning? 

   >> DIANE COLEMAN:  Yeah, he includes the before being born.  But he also says after.  And his earliest writings went with the first 30 days of life.  That's when you could have this policy that while parents could not kill a nondisabled one‑month‑old they could kill a disabled one‑month‑old.  But now his more recent writings are going beyond anything like that to, you know, basically babies in general and he doesn't give an exact time, timeline but it is clearly more like, you know, much more than one month. 

   >> JOYCE BENDER:  Okay.  Do you understand how heinous this is?  What the heck is wrong with Princeton?  If you are listening to the show right now I really hope that you write a letter.  And how about that petition, is it still there or what's the deal with that? 

   >> DIANE COLEMAN:  Yes, absolutely.  If you go to our website and plug in Peter Singer to the search engine, it will come up.  And you can go ‑‑ you can follow the links to go to the petition. 

   >> JOYCE BENDER:  Yeah, and if you are someone ‑‑

   >> DIANE COLEMAN:  I would encourage people to still do that and to support the other efforts that the folks that are right in that area there are undertaking.  We could mention that, you know, one of the trustees is Governor Chris Christie, a presidential candidate and that, you know, sending messages to his website about, you know, you need to not only denounce Singer yourself but get your fellow Princeton trustees to do the same thing and, et cetera. 

   >> JOYCE BENDER:  Yeah.  What is that website again? 

   >> DIANE COLEMAN:  I'm saying ‑‑ well, our website would link to the petition.  But Chris Christie's website is his government website or his campaign website.

   >> JOYCE BENDER:  Right, but I am meaning the petition, they get to by going to your website, correct? 

   >> DIANE COLEMAN:  Yes.  If you go to our website and search the name Peter Singer it will come up. 

   >> JOYCE BENDER:  Let's get back to this Chris Christie.  Boy, that's a great idea.  If you are listening to the show we should barrage him.  We should hit him hard with this and I will advocate by the way for some news show to bring him on and talk about this.  Because this is such a serious issue.  And, you know, if you talked about this nationally, oh, my God, this is so terrible.  I mean it is just so terrible.

So okay, Diane.  We are with you on that one because I have been angry about this for just a very long time.  And I have written and I will continue to write.  Just a couple last questions.  First of all, Diane, if you had to leave a message with our listeners today what would it be? 

   >> DIANE COLEMAN:  Well, I would like to encourage people to get involved.  And it really does start as Joyce said by learning about the issues.  People can go to our website notdeadyet.org and you can subscribe for free to our blog and you will get e‑mails when we post something new.  And then you have other information about how to get involved, how to contact us and make donations.  And I am very willing to communicate with people about how they can help us, doing letters to the editor, fed piece, a lot of communication that's needed is through the media.  So whatever your interest area is we would just like to encourage you to learn more and get involved. 

   >> JOYCE BENDER:  Learn more.  Oh, learn more.  That is so true because I am sure there are people that have been listening to the show today that are shocked because when I talk to people they will say what, and then I will say oh, well, I have epilepsy.  You have a significant disability.  You better hope that didn't happen to us, the Peter Singer advice or we wouldn't be here right now.  I want to tell you again please go to notdeadyet.org, make a donation. 

And we end every show with a quote from a national leader who has impacted so many people.  And today that quote is from Diane Coleman who said, "Assisted suicide is not a benefit.  It is a threat."  This is Joyce Bender.  Thank you so much, Diane, for being with us. 

   >> DIANE COLEMAN:  Thank you for having me. 

   >> JOYCE BENDER:  All right.  I look forward to talking to you all next week on Disability Matters at VoiceAmerica.com.  Talk to you again. 
    (Session concluded at 1:57 p.m. CST)

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   This is being provided in rough‑draft format.  Communication Access Real-time Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

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