Organizer's Forum

Disability Advocates Lead Fight: June 16, 2015

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Organizer’s Forum: Tuesday, June 16th – Topic: Disability Advocates Lead the Fight Against Doctor-Prescribed Suicide Laws

TUESDAY, June 16th, 1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time

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Disability rights advocates from a broad spectrum of groups are leading the fight against doctor-assisted suicide laws.

Contrary to proponents’ claims, these laws do not give individuals the choice in how they die. Instead, these laws give that choice to doctors. Anyone could ask for assisted suicide, but doctors decide who’s eligible, who’s expected to die in six months and who isn’t, whose judgment is impaired and whose is not, who’s being pressured and who is not.

Advocates from the Maryland Arc, the California protection and advocacy system, as well as Not Dead Yet leaders will describe and respond to questions about the efforts so far in 2015.

Diane Coleman is founder, president and CEO of Not Dead Yet, the national disability advocacy group formed in 1996 to organize disability community opposition to assisted suicide and euthanasia. Not Dead Yet organized friend of the court briefs (joined by NCIL among others) in the Montana and New Mexico court cases in 2009 and 2014, and operates an ongoing disability blog on the issues. NDY also organizes direct actions opposing assisted suicide laws, including a three-day protest in 2014 in Chicago by independent living and ADAPT advocates against the World Federation of Right to Die Societies, an international euthanasia group.

Richard Davis is the Director of Public Policy for The Arc Maryland and is also the leader of the state’s Disability Response Team (DRT), a multi-disciplinary partnership with law enforcement, legal professionals, victim service providers, self-advocates, and other disability rights organizations coordinated through The Arc U.S. National Center on Criminal Justice and Disability (NCCJD). Richard was the 2013 Disability Policy Leadership Fellow at the Association of University Centers on Disabilities (AUCD) in Washington, DC and was also a Leadership Education in Neurodevelopmental Disabilities (LEND) Fellow at the UT Health Science Center in Houston, TX. He received his MSW degree from the University of Houston Graduate College of Social Work.

Deborah Doctor is Legislative Advocate, Legislative and Public Information Unit, for Disability Rights California, California’s protection and advocacy system, where she has worked 14 years, specializing in public policy on long term services and supports. She has worked on alternatives to institutional long term care since 1980, and worked previously at DREDF and the Public Authority for In Home Supportive Services in Alameda County. She has an Executive Masters in Management and Disability Services from the University of San Francisco.

John Kelly, longtime Boston-based disability rights advocate and writer, led the Massachusetts campaign as director of Second Thoughts: People with Disabilities Opposing the Legalization of Assisted Suicide. He appeared on television, radio, in print, and presented the disability rights perspective in public forums on behalf of the entire opposition coalition. He is currently New England Regional Director for Not Dead Yet, and worked extensively with independent living advocates in CT, NH, NJ and MA in 2014 to oppose assisted suicide legislation. John also assists in developing testimony for NDY advocates across the country.

 

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Background

The Organizing Workgroup of the National Disability Leadership Alliance hosts these calls the third Tuesday of every month as a resource for disability organizers, in an effort toward building the organizing capacity of the disability community across the country. They generally follow the format of a Welcome followed by 2-3 experts in a given area speaking for a few minutes on their experiences, advice and challenges. The calls include a 20-30 minute question and answer period.

To ask questions via CART: Sign-in to the Chat function on the right side of the transcript and type your question. One of the call facilitators will read out any questions posted there.

Because we want to maximize the generously donated CART services, we will begin the call promptly at 1pm and end the call promptly at 2pm (eastern time). A few other reminders about call etiquette:

  • Say your name before each time you speak
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So you can mark your calendars now, Organizer’s Forums are held on the 3rd Tuesday of every month. If you have suggestions for call topics or presenters for upcoming topics, please email them to jlehman7@gmail.com or dcoleman@cdrnys.org.

Looking forward to talking with you all!

Jessica Lehman and Diane Coleman
Co-Chairs, National Organizing Workgroup

Date: June 16, 2015

Client: Jessica

Event: Organizer’s forum

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>> From Kate from New Jersey.  [beep]

>> This is Richard Davis from Maryland.

>> Hi Richard.  We can hear your voice.  [beep]

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>> We are waiting for Jessica Layman to join the call.

>> Okay.  Also going to have somebody using a speech echo, That’s Bob, I think he is coming on now.

>> Okay.  Yeah I, I’m on the phone and probably also substitute for Megan who probably cannot make it.  So I will be representing her as well.

>> Hi this is John Kelly.

>> Hi John, how are you?

>> Good, how are you?

>> I’m very good.  [beep] [beep] [beep]

>> Hi this is Stephanie.

>> Hi Kathy.

>> Hi Kathy.

>> Hi Kathy.

>> Hi.

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>> Steven and Nicole here.

>> Hello.

>> Hello it is Marilyn I thought I was — [beep] [beep]

>> Excited to hear you.

>> Hi Marilyn, this is Dave and Kathy and Nicole, John Kelly.

>> Elaine.

>> Hi Elaine.

>> Hey hey —

>> Hi everybody this is Jessica Layman.

>> Hi Jessica.

>> Hi Jessica.

>> Do we have our speakers on?

>> I’m on, this is Diane.

>> Okay.

>> This is Richard, I’m on as well.

>> Hello Richard, I hear you and I hear John.

>> John is on, yeah.

>> I’m not sure about Debra.

>> We are all on — (people speaking at the same time)

>> I’m hearing a lot of people joining so I will just give people a minute or two.

>> Hi this is finish gardener from greater Boston and I’m with the network of greater Boston area.

>> Who is this again?

>> This is Finn Gardiner from the Boston chapter of —

>> Okay this is, hi there —

>> Who are you again?  I didn’t catch your name.

>> This is Finn.

>> Oh Finn, oh sorry.  Hi Finn.

>> Hi Finn, this is John Kelly.

>> I’m sorry —

>> Hi from Boston center here —

>> Hi.

>> Hi Allegra, this is John Kelly.

>> Introduce you.

>> Jessica, this is Diane.  I just wanted, I know there may be more on that one Jessica on the call, Jessica Layman, I want to let you know there is a possibility that I will have to sign off the call before the call is over.  I just wanted to let you know that.  If that happens John’s, you know, ready to answer any questions and obviously we got lucky and Marilyn is on as well.  So if I do have to sign off you are all set for expertise.

>> Jessica: Okay just let me know if you are signing off.

>> Yeah, okay.

>> Jessica: Before we officially get started, excuse me.  Diane usually monitors the chat window so that if anybody has a question or comment there she will read it out.  Anybody else who is on a computer who could volunteer to get on the chat and at least kind of alert me if there is something there?

>> This is Allegra, I can.

>>Jessica: Thank you Allegra.  Let me know if you have any trouble getting on.  All right.  Well it looks like it is five after the hour so why don’t we go ahead and get started.  First of all, welcome to everyone, my name is Jessica Layman, Co-Chair of organizers forum as well as Diane Coleman, will introduce her in a moment because she is hoping to do today’s call, it is a project of national disability leadership alliance, a national cross-disability coalition amplifying the voice of people with disabilities and the organizers forum was started to really expand and support community organizing in the disability rights movement and on disability communities and so we do calls every month and sometimes they are on issues like today and sometimes they are more kind of strategies or tactics as far as how you do direct action or put on a town Hall meeting.  We are definitely looking for topics, so if you have something that you think would fit this call, please let me know or let Diane know.  Let’s see, what else, this call is captioned as I mentioned just now.  Feel free to log on and take questions there and we will read those out on the call.  We will have dialogue as well so you can do it either way.  When you do speak, please remember to speak slowly and clearly, which I am always guilty of forgetting.  And please say your name before you speak.  Please don’t put us on hold, we have had problem with hold music in the past.  If you need to step away from your phone hang up and we can always call you back.  I will ask people to mute your phone if you are not speaking you can hit star 6 to mute and star 6 again to unmute.  So we recognize that a one-hour call is not enough to really get into a lot of the topics that we cover.  And so we have a couple ways to have on-going discussions.  We have a list serve and That’s organizer’s forum@ yahoo.com, we don’t have a lot on there, just a few announcements, go to Yahoo.group.Com, organizer’s forum, all one word and click join, it is really easy and FaceBook forum, two words that time, hit like there so you are connected.  We encourage people during the call or right after the call, get on FaceBook or on list serve for all the people who aren’t on to say hey this is something I heard that really stood out to me or something I’m wondering about or a question, let’s have more discussion about it.  We also will have a recording and a transcript of the call on the NDLA website and That’s www.disabilityleadership.org.  I realize I should check, do we have Kristin on the call?  Okay, well I’m hoping this call is being recorded I will try to verify that in the next few minutes.

>> Beginning to sound like there is, like you are under water.  I don’t know what the impairment is here.

>>Jessica: All right let’s um — I think I’m going to go ahead and mute people I think, it looks like we have more than 30 people on, instead of doing introductions we have a lot of good speakers to get to.  What I’m going to do is mute everyone, hold on one second.  [beep]

>>Jessica: Okay so now everyone is muted.  I hope you all can hear me better.  I’m going to go ahead and ask our speakers to unmute themselves by hitting star 6.  Can you all tell us if you are unmuted?

>> I’m unmuted, right?

>>Jessica: Okay, we can hear you, perfect.

>> I’m unmuted, right?

>>Jessica: Yes.  Wonderful.  Wonderful.  So our topic today, as you found the title is disability advocates lead the, the fight against doctor prescribed suicide laws.  We have an excellent panel of speakers here to talk about this issue, it really heated up around the country.  We are starting with Diane, founder, President and CEO of Not Dead Yet a national disability advocacy group started in 1996 to organize community opposition to assisted suicide and euthanasia, Diana, if it is okay with you I will keep it short so I can give you time —

>> There is more in your introductions you want to talk about later feel free, I will do a brief intro now and then we will have not necessarily in this order, but we have Richard Davis, director of public policy for the Arc Maryland and also leads Maryland’s Disability Response Team, which is multidisciplinary partnership with law enforcement, legal professionals, self-advocates and other din rights organizations.  So we are delighted to have Richard and Debra doctor who is here in my state of California with disability rights California, California protection and advocacy system has worked for 14 years as legislative advocate, specializes in public policy long-term services and support.  Then John Kelly who is a long time Boston based disability rights advocate and writer, lead campaign of director second thoughts, people with disabilities opposing legalization of assisted suicide.  On that note I’m going to go ahead and turn it over to Diane to get us started.  Actually before I do that, I should remind people the format for our call, if you haven’t been on before.  We are hear from our speakers take about a half hour or so and we will have some time for questions and answers and discussion at the end.  So please stay-tuned and hold on to your questions and comments until that time.  Thank you, go ahead Diane.

>> Diane: Thank you, Jessica.  People are often surprised to learn that all of the major national disability rights groups that have taken a position on assisted suicide would oppose a public policy often viewed as a new individual right.  Simply put, assisted suicide sets up a double standard.  The suicide prevention for some, suicide assistance for others, depending on their health or disability.  And a sad distinction was based on race or ethnicity, we call it bigotry.  But we see that there are dangers of mistakes, abuse that assisted suicide laws pose to all disabled people and that these are really rooted in a profound evaluation of our lives.  Those of us with serious disabilities have good reason to be skeptical about the mantra of choice being used to market assisted suicide laws in our health care system.  Anyone could ask for assisted suicide, but the law gives the doctor the authority to decide who is eligible.  Doctors used to exercise total control over the lives of people like us with disabilities, raising such children at home, sentencing us to institutions, imposing own ideas about what medical procedures would improve our lives.  Disability groups started paying attention to the problems of doctors making life and death determinations in the 1980’s, profile court cases involving the right to refuse treatment.  One involved a woman named Elizabeth [Name?] she was 26 years old, had cerebral palsy, had a miscarriage and marriage breakup, one of the hospitals made her comfortable while she starved herself to death.  Other cases involved men on ventilators stuck on nursing facilities like Larry, who wanted to or else pull the plug.  The doctors, courts, media and public all viewed these severely disabled individuals as the equivalent as terminally ill and court’s uniformly granted them a right to die but no right to live free or get same suicide prevention that anyone else would get.  Then in the 1990’s Dr. jack got on the scene and he was conducting assisted suicide using lethal drugs where 2/3 of body count were people not terminally ill, even though the media kept on saying That’s what they were.  So people with disabilities began to feel that a group like ADAPT was needed to control assisted suicide, legislation and policy work, because doing this the nice way wasn’t getting through to anybody.  So ADAPT, Bob Kasta, one of the national leaders came up with the name Not Dead Yet from the movie Monty Python, holy Gayle, 1986, we have been working on this, late last year the leading lobby group for assisted suicide, to massive media campaign to promote assisted suicide laws based on the story that many of you heard I’m sure, involving Brittany Maynard.  This year more states than ever before introduced bills to legalize it so we have been working with advocates in states that have never been involved before, all across the country.  I’m very grateful today that you’ll be able to hear from Richard Lewis, of Maryland, Debra Doctor of California and John Kelly, New England director of Not Dead Yet, our point person for legislative testimony.  Thanks to them, Marilyn Coleman and others so far this year, assisted suicide Bill That’s new has passed, no new bill has passed.  We are not done yet and need everyone’s help.  So at this point I would like to ask Richard to tell us what he was able to work on in the state of Maryland.

>> Richard: Can everyone hear me?  Just testing to make sure I’m unmuted.  Hello?

>> Yes you are unmuted, I can hear you.  Can everybody hear you?  Yeah.

>> Richard

>> Richard?

>> Richard: sorry, can you hear me now?

>> Yeah I can hear you now.

>> Richard: Okay, sorry about that.  Okay so as Diane mentioned in Maryland we had one of the assisted suicide bills introduced and some of the things that, that we put in our physician statement about it included the fact that in a health care system that this would become the sense of option, a lot of the proponents of it say what’s the problem of just making this an option?  It is just a choice, if you don’t like it you don’t have to do it.  It is up to advocates, especially disability advocates not just legalizing a choice, it is legalizing a process where doctors have the authority to decide who lives and who dies, another potential is abuse, we know people with disability are victims of abuse, a lot of times it is trusted care-givers so some of the response to that there are safeguards, there will be criminal penalties if that happen, the bill the way they were written, I didn’t know until we got one, intentionally are drafted in a way that the safeguards aren’t really enough at all.  A lot are the same things no witness at the time the medications are taken, no requirements of the person who is getting the prescription is the one to pick it up.  So if anybody with an agenda could go down to the pharmacy, approximate I can up the pills, take it home and force the person to take them and so we highlighted that in our testimony as well.  We really wanted to draw attention to the fact none of these so-called safeguards in the would be effective at all with somebody with an agenda.  We thought the Bills were quite careless, when somebody receives the news they have a terminal illness there is a natural grieving cycle that will happen and no requirements that people be screened or counseled for depression, that they receive any support on that but at the same time they could quickly, in that state of mind say well this is the option I want to take.  There was no, no measure to require a psychologically valuation and so some of the opponents would bring in a psychiatrist to say no need for that, you know, people are in a fine state of mind to make that kind of decision.  Obviously those that opposed had witnesses that were able to highlight why that is not the case.  A lot of that is what we Web through in Maryland.  Another thing That’s important to know, because it is a polarizing issue, other organizations had conflicts as to whether or not they would take a position on this.  So there was a compromise with other advocacy groups to say we will take education, educating stance, but we are not going to say we support or oppose it.  Within Arc Maryland we had some initial disagreement too but we were able to, through discussing the issue and getting points of view brought to everyone’s attention, we were able to meet agreement we were able to take position to oppose it.  Especially the way the Bill was written, um, you know, really drew attention for the need for sick group to oppose it.  I hope that some of that is helpful.  And another thing is the Arc US, I work at Arc Maryland, arc US has mission statement opposition to physician assisted suicide and there is a leadership institute where we are also going to be sharing information with state chapters executives about this issue and so hopefully as you are building your organizing, community organizing, reaching out to some arc state chapters in states where they may be introduced again hopefully, so putting that out there as a potential resource of the with that I will go ahead and move on to the next speaker as well.

>> So Diane, are we transitioning to the next speaker, I’m sorry?

>> Yeah um I think, I think that was really good and it would be a good time for Debra to talk and then we can see where, where we go from there.  We will wait to the end for questions.

>> Debra: hi this is Debra doctor, can you hear me?

>>Jessica: Yes, thank you Debra.

>> Debra: Okay excuse me, yeah I work at disability rights California in previous years and previous versions of assisted suicide Bills our board was not able to come to consensus.  This year we did something a little different, we adopted a set of principles, which is what we do about other topics saying if there’s physician assisted suicide bills this is what they must contain and this is what we, they must not contain.  And based on the adoption of those principles I was able to take an opposed position because the bill in California, of course, doesn’t contain any of the protections that a board said were important and contains all of the problematic provisions.  So I, you know, if anybody wants to see our principles um I’m happy to share those.  And I want to say that maybe unlike some other groups, opposition is not that physician assisted suicide is never okay, it is not a principle against that, it is a principle on public policy and I think one thing that our board and others struggle with is the difference between thinking about what somebody might want for one self or a loved one or somebody that you care about versus making public policy.  And I think it is a distinction that important and as I said something that people struggle with.  We have, you know, Brittany Menard was a California who moved to Oregon, not everyone is Brittany, not everyone has made this choice freely, which I do believe that she did and had a loving and supportive family.  Our job was to think about the worst case and the people who might be the most vulnerable to all the lack of safeguard and pro cap in the Bill.  And so That’s how, I’m new to being able to advocate on this Bill.  So I went through an analysis of whatever I could get my hands on about Oregon and other legislation.  So, you know, I talked to people about the possibility of mistakes and I looked at the Oregon statistics and saw that there was people who took the lethal dose in 2014, which they received in 2012 and that to me proves that the predictions, you know the comfort that people, supporters take and the idea that everybody who gets this prescription was going to die within six months is not born out by the experience in Oregon.  If you took it two years later then obviously the projection was off.  Also see an increase in Oregon of prescriptions for people with ALS and also why I’ve tried a little bit to talk about the number of people in the disability community whose parents were told 40 years ago their kids would not live past childhood, I don’t know if That’s a little harder for people to get their head around than some of these other factors.  My current favorite is using experience of Valerie Harper, given three months to live two years ago.  Oddly when we talk to the authors about this prediction problem they said oh well isn’t it great those people lived longer and yeah except for the people who killed themselves and didn’t live longer and killed themselves because or were killed because they believe their doctors predictions.  On the issue of the safeguards we point out that every level that there are assumptions built in that are not born out by the actual legislation, by the physicians with the authors like to think some long-term relationship.  But in fact, there is nothing, not only is there nothing in the Bill that requires that, even the authors acknowledge there will be if this law passes in California, health care systems which will forbid their doctors from participating,   I would expect that to be of health care West, if you have a long-term relationship with your physician who is not able to prescribe the drug, it means absolutely that you have to find some other doctor and the bill allows, could be a doctor who met you five minutes ago who is the, you know, treating physician in a Nursing Home, for instance.  The assumptions about relationship with the physician, the idea that there are errors who are able to be one of the witnesses.  The witnesses are not just like, you know, notary, they are actually saying that you’re making this choice freely and it could be somebody they dragged in from the street who didn’t know you five minutes ago.  There’s no oversight about what happens to the lethal drug, absolutely, after it gets prescribed nobody knows what happens.  The safeguards in the Bill for the physicians, not for the people with disabilities.  The physicians are well protected and in California the change of position of California medical association from opposed and neutral Coincided with provisions, protection for physicians.  So my approach, I can talk about abuse but I will just say, to support those things that make you comfortable supporting this Bill are not actually in the Bill or they are not born outside the facts.  So I think That’s all I want to say about it except one more thing which may not be shared by others.  A board opposed anything that said that somebody with a psychiatric diagnosis or you know depression would not be able to use physician assisted suicide they felt that was perpetuating discrimination we would not accept in other circumstances where we were talking about a benefit we wanted people to have.  A little bit different than how other people are analyzing this.  So I will stop now, thank you.

>> Okay.

>>Jessica: I think the letter is brilliant and definitely people should read it for understanding how this so-called safeguards in the assisted suicide Bills are designed to protect doctors and not patients and that, that is under appreciated by the media or others that talk about it.  The, the fact is lawyers wrote that Bill and designed it the way Debra described it.  That’s something that I think people ought to be affected by and pay attention to the letter that on that point.  Yeah, very powerful.  So now I’d like to ask John to bring the end of the train here today.

>> John: Thank you Diane and thank you Richard and Debra.  Live and work in Massachusetts, one of the things I do is assist people with preparing personal testimony for legislative work and one of the most powerful ways that people can speak personally is to talk about their own stories and how especially our lives have been devalued.  And so for example, Denise Karuth from Massachusetts testified in 2013 how after she was diagnosed with her disability that her well-meaning and loving brother asked her why she just didn’t kill herself then.  And that, that is a very common idea floating through the culture that it is better to be dead than like us.  So we use our own lives to prove that, that is not the case and you know to make the point that as Diane said earlier that really the basis on which assisted suicide is offered to people is based on disability.  It is not based on any sickness level or anything else and if you look at the reasons given by doctors reporting in Oregon gone, they are all social and psychological reasons like feeling like a loss of dignity as if one has to die to have dignity.  And feeling not so autonomous or not being able to do typical activities.  That in this culture disabled people, we are often concerned as if we are terminal, just like those early cases Diane mentioned about Elizabeth and Larry Macfey.  Out in the UK the sponsor of the Bill, Lord Felkner, recently admitted the reason he was supporting this Bill was that for some people the idea of being dependent on others is intolerable.  And he has really dedicated the Bill to the memory of Tony Nicolson with syndrome who was in no way terminal but was begging courts to have someone kill him.  So we need to uphold our own lives and we need to bring up the fact that we are often pressured to refuse treatment, to or to go for assisted suicide.  And that these are, you know, this idea put forward that we are somehow a burden on others and we just heard from Peter Singer recently that, you know, disabled infants are left, more happiness in the world if they don’t exist.  Some people feel that way about people with disabilities.  One thing that I’m most thrilled about is that in Massachusetts and elsewhere that we broadened our disability coalition so in Massachusetts the autistic self-advocacy is involved, ADAPT chapter has signed on to oppose the Bill and national ADAPT has also opposed and also Npower, with mental health diagnosis.  Just in the last minute or two I got I want to just, you know, remind people that there is plenty of resources and I want to encourage people to go to Not Dead Yet website, which is www.notdeadyet.org.  If you look at the top of that page, on the website, you are going to see on the top right a um tool kit for opposing assisted suicide.  And tool kit opposing assisted suicide, right on the banner under the Not Dead Yet sign, there is just a wealth of information there and the beginning is a little bit text heavy, but if you move on down there are practical sections on just about everything you would need and so for example number 2 is educating and organizing disability opposition and, you know, there is a nice article by Diane about why disability rights organizations oppose it.  There is plenty of op-you can find on the website.  Also in terms of talking to legislators there is a wonderful legislator primary about 1 pages that really has just about everything you would need in it um in order to hand to legislators and help them understand why we are opposed to this Bill.  Then I just like to say quickly that um, what’s important about talking about assisted suicide is to know that you don’t need to know everything to talk about it.  That even knowing a few basic facts like terminal diagnosis is notoriously inaccurate, that many people live months if not years.  Or that abuse is inevitable.  Some strategies that don’t work um include, do not ever make references to the Nazis or the Germans, with their programs, even though there is a lot of truth there, look at our arguments dismissed.  The other arguments that don’t work are arguments related to religion, because we have to argue in the secular playing field.  And the arguments that do work are on the um the talking points that are available and to maintain message discipline.  We all want to talk about other things, but making our main points, you know, basically that innocent people will lose their lives under these bills through mistakes and abuse that cannot be undone because people will be dead and so I think right there I’ll stop and we can move on to questions and answers, thank you very much.

>>Jessica: I think I should add one thing there.  That’s to emphasize that a lot of the resources that we link to from the tool kit on the NDY site are from the site of the disability rights education and defense fund.  And DDRS under public policy has an excellent page on the assisted suicide issues which includes the legislative primer that John was mentioning.  Came up with that and it is a document that anyone who is working with in legislative visits um within their own state on opposing assisted suicide legislation, that is the document that we recommend people take with it to try to legislative primer on the assisted suicide laws.  So um with that Q and A.  If people have any questions they’d like to bring up.

>> This is Jessica.  First I just want to step in with a huge thank you to our wonderful panel and I want to remind people we will keep everyone muted so we don’t hear background noise, if you want to speak do hit star 6 to unmute yourself and ask a question.

>> Yeah hi this is Peter from LTI, I just out of curiosity, I do remember that when polls were taken early on the vast overwhelming majority of adults were in favor of it and whether it is worth or not, my question is has anyone ever thought about helping people want it here in the United States and if there is an overwhelming majority of people with illnesses or disabilities, isn’t there a way as advocates, at least some of us, that instead of just saying none of these laws are good and we don’t want anything about it, but saying how do we, how do we write something or draft something that will actually take, actually cover the problems or eliminate the short-comings or do something other than saying everything is no good, we don’t want anything.  The people that may actually want it or need it or actually deserve it are just SOL.  You know, you are blocking off, I’m not saying free choice, because you are right it is so right of abuse, given power to physicians is so wrong, but what we are talking about is destroying the mode rather than the concept by not having anything to replace it with.  If nobody wants it, if nobody wants anything like it, everybody says can’t stand the thought of assisted suicide, then we should block it everywhere.  But obviously it is coming up, somebody is asking for it somewhere and if they are, we should, we should be making some effort to do it right.  And if we can’t, then we can’t.  But apparently, I’m not seeing any effort to do it right.

>> Debra: this is Debra doctor, can I speak on that?

>>Jessica: I think that would be a good idea.

>> Debra: Um, our, I don’t know whether there is any way to build in sufficient protections without having it be so intrusive as to be unworkable, but to your question, our principals and our letter does lay out the, a fairly extensive list of protections that we think should be in any Bill.  So maybe That’s, you know, partly an answer.  As I said at the beginning, our organization is not saying the concept of physician assisted suicide is the enemy, we are saying that these Bills and I know this is different from what other organizations are saying, but that this Bill and others are defective and so I don’t know that anybody has figured out a way to make it safe for everybody but I do understand your concern that there might be people who absolutely of their own free will and for whatever reasons do want this and I think that is a conundrum and one that, you know, I certainly haven’t figured out what there could be that would make it sufficiently safe to make public policy palpable.  But I would suggest that you look at our list of protections, thank you.

>> This is John Kelly.

>> Hello?  Oh.

>> This is John Kelly.

>> You first.

>> John: I was going to talk a little bit about that the research center has done extensive polling on end of life and aced suicide, they found that support for assisted suicide has gone down and support for doing extensive interventions at the end of life has gone up.  The group that is pushing for these Bills is a slice of the white upper middle class and professional classes and if you look at out in Oregon, 97% of the program users have been white and in a state That’s 22% not white.  Only one African-American has used it and that so there is not really a lot of support and then just to the point that it is impossible to have an assisted suicide law because innocent people will lose their lives.  And regardless of how good it might look for one individual, it will cause innocent people to die and the analogy with the death penalty is very strong in that people have realized that we can’t have a death penalty because innocent people will lose their lives and that makes it an unfortunate crime, we can’t have innocent people losing their lives no matter how media friendly that one individual, like Brittany, may look.

>> This is Diane.  This is a very important point and that comparison with the death penalty is really crucial.  And I want to just add in response to the questioner, anyone is able to commit suicide who truly wants to do so, by using the same method that Elizabeth was going to use back in the 80’s of refusing food and fluids.  According to compassion and choices the lobby group for assisted suicide, if using food and fluids is a viable method of doing so that is peaceful and comfortable and they got a whole brochure on it called voluntarily stopping eating and drinking.  So type in those words in your Google, you can get the compassionate choices brochure for how to commit suicide on your own.  And it isn’t necessary to change the law and grant blanket immunities to all of the participants in someone’s assisted suicide with all of the room for mistakes for abuse that are in the law as written by lawyers designed to be that way.

>> Hello, hello?

>> Hi, yeah we can hear you.

>> Okay, great.  So first of all mentioned that I just had my mouth wide open when you mentioned Elizabeth how to do that, That’s how soft I am.  And second, so I have a few questions from Megan actually who is unfortunately not able to attend the meeting.  The first one is, is there, I’m trying to pay attention but maybe I missed the part, is there anything going on right now in Maine?

>> in Maine the Bill was just defeated yesterday or day before.

>> Very good.  Second question, is there any way how we can help in California, any way we can work with someone how we can support one another?

>> Diane: I’m sure there is, there is a coalition there that is very good that you could join up with.  It is called —

>> Probably beta-blocker

>>David: Diane: California is against assisted suicide I believe is what it is called.

>> California assisted suicide —

>> Their website is um noassistedsuicide ca.org.

>> I guess someone mentioned this but going to be like a hearing for Massachusetts Bill October 27th.

>> John: um That’s the very tentative date.  I would not, you know, say that would be the exact date.  But That’s the, the tentative schedule for the hearing,  yes.

>> Okay, okay, thank you.  I’m all set now.

>> Hi this is Kathy Mcginnis in Maine.  I had one question, political strategy and John Kelly, you know how much I love you, but I am intrigued by the comment you made about not going down the line of talking about the Holocaust and talking about the number of people with disabilities that started with parent approved euthanasia and then moved into (static online) — why as a movement have you guys in Massachusetts determined that to be not a method that works?  And in Maine we certainly found it works internationally when I’ve done this work we had found Open Arms with that concept because it is so fresh in the minds of many of the people.  I’m the daughter of a liberator of concentration camps.  It is not something that left my father ever and was a concern of his, my whole life until the moment he passed away in 2009.  Though I understand the shock factor people feel when you play the card of the Holocaust, but we have to remember that our entire motto, mental health and physical health system was not only designed by those same German doctors, but in many cases we brought them over here, the same people that killed our brothers and sisters designed many mental health hospitals that we had in the 70’s, 80’s and 90’s closing down, investigating for physical and sexual abuse and torture.  So this organizer does not back off when talking about assisted suicide.  I bring up the Holocaust, I was taught never forget, if it is uncomfortable for them to hear it then That’s okay with me.  Because I think we need to talk the talk and walk the walk and roll the walk and we need to be real clear about what we are saying, that this is a step towards legalized Genocide and is a step towards medicalization of the existence of disability.  And that is exactly what we have done in Austria and in Germany and by many families until they knew the exact extent of what was going on —

>> That’s a really —

>> I disagree with that political strategy.  I used it for native people that are of course suffering from tremendous aspects continually of Genocide and I developed a whole campaign around the use of for sterilization of native woman, the variety of other issues facing indigenous people and I put it right out there.  I said choose your side, us or Genocide.  So I think that if we are going to dance around with lawyers and doctors about language then we are going to be embracing some version of this that someday is going to come back to bite us in the ass.

>> John: maybe, sure — the um Diane, go ahead —

>> Diane: I’m thinking, there are some people who can raise comparison with the Nazi euthanasia program, convincingly and effectively.  But most of us cannot do so effectively because we don’t have enough connection to it and because it is simply a situation where we are accused of being fanatic or weird due to that connection.  So I don’t think there is necessarily our rule of thumb about it, relating to anything that you brought up.  But I do think that for Not Dead Yet, for the disability community, we can’t in general draw that comparison without losing the potential to be persuasive.  So we just have to be very careful how that is used —

>> John: the —

>> Diane, mind if I add.

>> Go ahead.

>> This is Marilyn, is it okay if I add a thought?

>> Sure.  Go ahead.

>> Marilyn: The speakers were all so wonderful by the way, what a great panel.  We have talked a lot about this and I’m willing to, you know, take the rap for, you know, really trying to get everybody on the same page on this.  It is not political, our decision not to talk about this.  Excuse me, it is not substantive it is only political.  We have watched time and time again when people do it for good reasons, their reasons are fine, no problem with the reasons or the logic for the substantive point in any way it is the political effect it has, it sets the cause back because it is misunderstood.  It allows the proponents to take the moral high ground and say how dare you compare us to the Nazis trying to help people.  No matter what we think of what they think of us we have seen the effect on the people we are trying to persuade, such as elected officials.  It is just sets us back when we could be talking about the harms of legalization and making some headway with them.  So That’s, That’s why.  It is not to put down the argument, substantively it is just to make sure we don’t hurt ourselves in other people’s minds because this is a political battle and it is easy to do passion and choices and easy headstart and take us away from our message that we really need to focus on.  That’s why we really stopped.

>> Well Marilyn, you know how much I love you and the work that you do, you are just phenomenal and I haven’t seen you in a long time, since the ADA I think.  But my concern just is, is a lot of the things that I’ve heard, testimonies around the country and what is becoming very much textbook, it is becoming very much countering their arguments, countering the medical arguments, countering the description arguments, the safety of the caregivers, all of those issues of the process rather than as Mr. Singer would say, the ethics of the issue.  And I think part of the problem with communicating the base point of our right to live is that we ourselves, as Diane said, don’t truly understand our own history.  I probably have talked to 15 people in the past week that have been in the disability right movement forever and have never read, Lapons Mass Murders in White Coats or the transcripts of what they did to children and people with disabilities.  We are our own worst enemies because we don’t educate ourselves about what has happened before.  We don’t read what happens here in Maine and at Harbor and other places around and we need to know all of that stuff and we need to know what has been done.  That down south 100%, 100% of woman with mental disabilities in the 1950’s and many with physical disabilities, about 40%, force sterilized without their permission and without their parents’ permission.  We need to know the facts, we need to know what is going forward.  I think that while I respectfully understand your version of what a political lobbying or legislative effort should be case by case by case, um I still think that there needs to be real hard core communication with people that this has to do with seeing us as human.  I’ve always felt this way, people know me within the movement know I have always felt this way.  But it hit home to me 15 years ago when I was pregnant with my daughter and my niece —

>>Jessica: I’m sorry, I just have to step in because we have to wrap-up.

>> Go on with the disability — yeah.  She was born with a severe disability.

>>Jessica: I’m sorry, I’m sorry, I have to cut you off.  We do invite you to continue sharing that story and having more conversation about it through the FaceBook page and the Yahoo list.  I think we would really be interested in hearing more.  I do want to invite our speakers if you have any very brief closing comments before we have to end.

>> This is Debra doctor I just want to say thank you very much for inviting me and thank you for the work that so many of you have done over many, many years enable us to become part of this site and I have learned a lot from you and will be relying on you in the future.  Thank you.

>> This is Diane.  You can contact Not Dead Yet through our website notdeadyet.org, on there is contact information for both myself and John Kelly from this call.

>>Jessica: Great, thank you.

>> Wonderful, thank you again.  Sorry John go ahead.

>> John: this is John Kelly just saying it sounds like there is some folks from Massachusetts on here and I look forward to working with you and providing you any more information that would help you advocate against this deadly movement.

>> Great thank you too.

>> Was that Richard?

>> Yeah this is Richard Davis here at Maryland I want to say thank you for the opportunity to speak here today if it I can assist with ideas for advocacy, please feel free to reach out to me (static) thank you again.

>>Jessica: Great a huge thank you again to our speakers for the powerful work that you are doing and the wonderful expertise you brought to this call.  I apologize for cutting us off but we want to be respectful and we will lose CART.  Disability leadership.org, we really encourage you to go on there and pass it on, share thoughts on FaceBook and organizer list serve so we can continue and broaden this conversation.  Please do join us for the next organizer’s forum call which will be Tuesday, July 21, same time and we will be talking about ADA anniversary events.  So thank you again for everyone and have a great day.

>> Thank you.

>> Thank you.

>> Thank you.

>> Okay great, thank you very much.

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