Organizer’s Forum Topic: Disability and Bioethics
TUESDAY, June 17th
TUESDAY, June 17th, 1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time
Join us for a stimulating discussion on disability and bioethics. The first ever Disability Rights Leadership Institute on Bioethics was held on April 25-26, 2014 in Arlington, VA. Four of the Institute’s presenters will share highlights from their talks on assisted suicide, withholding of life-sustaining treatment, reproductive technologies and wrongful birth/wrongful life litigation. Discuss how the disability rights community can make our voices heard in the public discourse on these issues. Nothing about us without us!
Speakers
- Diane Coleman is the founder, president and CEO of Not Dead Yet
- Marilyn Golden is Senior Policy Analyst at the Disability Rights Education & Defense Fund
- Marcy Darnovsky, Ph.D., is Executive Director at the Center for Genetics and Society
- Samantha Crane is Director of Public Policy at the Autistic Self Advocacy Network
- Call in number: 1-213-342-3000
- Code: 193134#
To get an idea of who joins our calls, if you are interested in joining on Tuesday, please fill out this quick form!
CART: The call will have real-time captioning (CART)! The website where you will be able to view the captioning is https://2020captioning.1capapp.com. Username: forum. Password: forum. Thank you to the National Disability Leadership Alliance for sponsoring the captioning of this call.
** If you need additional accommodations to participate in the call, please let us know as soon as possible.
MARK YOUR CALENDARS! The Organizer’s Forum has a call on the 3rd Tuesday of each month, 1-2 pm EST (10-11 am PST).
NOTE: We have a listserv for discussion on these issues. It’s organizersforum@yahoogroups.com; please go to: http://groups.yahoo.com/group/organizersforum/ and click “Join this group!” We also have our separate announcement-only listserv to allow everyone to easily get notices about the Organizer’s Forum, called disabilityorganizing@googlegroups.com. Please email us to be added.
We also have a facebook page! We can use this is a way to continue conversation beyond the monthly calls. Please “like” Organizer’s Forum on facebook.
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
- Speak one at a time
- Speak slowly and as clearly as possible
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 17, 2014
Event: Organizer’s Forum
Consumer: Jessica
This text is being provided in a rough draft format. Communication Access Realtime Translation is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
>> Hello, Jessica or Diane?
>> Hi.
>> It’s Marilyn Golden.
>> Marilyn.
>> Marcy: Hi. This is Marcy Darnovsky.
>> Hi, Marcy. This is Diane.
>> Marcy: Hi, Diane.
>> Hey, this is Carolyn.
>> Hi. This is Jessica. Is that Diane?
>> Diane: Yes.
>> I meant to check with you earlier. Do you want me to do some of the usual housekeeping kind of stuff (Indiscernible).
>> Diane: Yes. That would be great.
>> Anyone want to moderate the discussion and closing, that would be great too.
>> You want me to help modiate the discussion?
>> If you want to. I mean I can do that too.
>> It’s really your preference.
>> Probably
>> It’s really echoey. Is there anybody on the speaker phone? Maybe people can mute their phone.
>> It got quiet. Thank you.
>> Hello. This is Samantha.
>> That’s great. We have got all our speakers.
>> Hi.
>> Elaine Cole.
>> Hi, Elaine. Hi, there.
>> Karen Snyderman.
>> Steve Oldaker.
>> For independent living.
>> Can people put themselves on mute. I’m getting a lot of…
>> You can hit star
>> All right. It says there are 25 people on already. That’s great. Why don’t we get started and hopefully more people will probably join us in the next few minutes. Welcome to the Organizer’s Forum. My name is Jessica Lehman, Executive Director of the Senior & Disability Action in California and cochaired the Organizer’s Forum with Diane Coleman in a moment.
The Organizer’s Forum is a project of the National Disability Leadership Alliance which is a national cross disability coalition of consumer led disability organizations. The Organizer’s Forum is designed to expand and support community organizing in the disability movement. We have monthly calls. Hopefully some of you have joined before and welcome to the new folks. As always the third Tuesday of the month, same time, just one hour. Because we recognize one hour a month is not enough to deal with some of these really major issues, we are trying to continue some of the conversation outside of the calls. So we have a FaceBook group. It’s Organizer’s Forum. We have a lister called Organizer’s Forum at Yahoo group.com. Go to Yahoo group, go to Organizer’s Forum. There’s not a lot of traffic so don’t worry about your inbox getting filled up.
We have a website, NDLA website. Thanks to Christian for updating with information about the call and transfers and recordings of the calls. If you know someone who missed it or want to look at past calls, you can do it there.
As far as FaceBook, I want to encourage people to, after the call or during the call, go on and say here’s what stood out to me, here’s a quote I like, here’s something I’m thinking about, here’s a question I have, whatever it is, to share some of what we got out of today and to continue the conversation with each other and with others.
So we do a different topic each month and always looking for ideas. There must be someone who joined. This is Jessica. I’m just giving introduction to the call. We alternate every month between a call that’s a specific issue that’s happening right now that affects people with disabilities. Today is an example of one of those. Then we alternate those with calls that are kind of about the strategy or the tactics of community organizing or of outreach to different communities. If you have an idea for the next couple of months, please let me know. This call is captioned. Thank you to NDLA for the CART and thanks to the Captioner. The link is in the e mail you should have received. You can type on questions and we can read them off on the call, if that’s an easier way for you. Either is fine, having a chance to talk during the dialogue or using the captioning.
I want to ask you folks to remember to speak slowly and clearly and say your name before you speak. And please don’t put us on hold. We’ve had problems with hold music in the past. So if you need to step away, go ahead and hang up and you can call back when you’re ready. And thank you to those who have muted your phone when you’re not speaking, you can hit star 6 to mute your phone and hit star 6 again to unmute it when you’re ready.
I think I covered it. Let’s go ahead and do well, Diane, do you want to do quick introductions or rather just move into the speakers?
>> Diane: I’d be fine with not doing introduction, unless people feel like they’d like to, in terms of the callers. I’m open minded. For the last person that came on, how many are on the call? Sounds like people are muted, which is good.
>> Yeah. Let’s skip it. If we have more than 25 that may take a while. There is, in the e mail that you all probably received about the call, there’s a link for a Google Talk. I know some of you used it. If you haven’t put in your name, organization, contact information, if you don’t mind, so that we have an idea of what kinds of organizations or folks are represented here. That’s also a way we can do that.
So with that, I’m going to go ahead and I’m going to let Diane introduce the topic. Today is all about disability and bioethics. I know many of you are here about the disability rights institute on bioethics and here are some exciting thoughts from our four speakers today. Before I do that,I am going to let me see if it I can find my notes. I’m going to change the mode so that everybody is muted. And then I wonder if that’s going to mess things up. I’m thinking if we mute everyone we will have our speakers hit star 6 to unmute themselves. I don’t think that will unmute everyone else. Let’s try that. Hold on one second.
So I think everyone is muted. I will does our speakers to go ahead and hit star 6 to unmute yourselves.
>> Can you hear me now?
>> Yes. Go ahead. Diane.
>> Diane: Okay. Sounds good.
>> Can you hear me too?
>> Diane: Yes.
>> Yep.
>> Diane: I think we can get started then. Thanks, Jessica. So what we’re wanting to talk about today is the disability rights leadership institute on bioethics. So it’s not all of the bioethics topics. In fact it’s a really big field, but it is, on some of the topics that we think are of great interest to the disability community. And what the conference consisted of was two days, where we did a combination of presentations, and discussion groups. And what we have on the phone here today are four of us, who did presentations. And we’re going to give you a very quick summary of what we talked about. And then open it up to questions.
So we’re going to do it in the order that we did it in the conference. So I started out talking about treatment withholding and withdrawal, in other words life sustaining medical treatment, being withheld or withdrawn from people. I started out, though, with a something that I highly recommend, a YouTube video, called Euthanasia Blues. You put it in Google. It comes right up. And it’s very a good way to start out this topic area. So I encourage people to check it out.
Then I gave a little bit of prehistory about Not Dead Yet and how we formed back in ’96. And then I talked about five issues. First, there was surrogate decision making. Surrogates are people who have the potential power to make a medical decision to withhold or withdraw life sustaining treatment. And there are indications out there that the rights of surrogates to do that are being massively abused to the detriment of people with disabilities.
One case recently brought to our attention by disability rights in Wisconsin arose in the case of a 13 year old boy with intellectual and developmental disabilities who had pneumonia. And it was easily treatable with antibiotics but the doctor encouraged parents to transfer him to a hospital where he could be taken off of antibiotics as well as artificial nutrition and hydration, and he died.
So the protection and advocacy organization in Wisconsin wanted to file a case that would basically get a ruling for the future, that this could not be what is done, because it clearly had violated State law. So the Autistic Self Advocacy Network, which Nancy here is on the call, and she actually wrote the brief that we filed an amicus brief, that Not Dead Yet and 12 other organizations signed onto, to support the protection and advocacy agency during the case. And we still are waiting the results.
Next, I talked about what we call rush to judgment cases. The American Academy of Neurology says that you can’t determine, after a traumatic brain injury, or other kinds of brain injury, whether the person will wake up until after you’ve waited 12 months, in the case of say a car accident or something. And for the kind of brain injury that comes from a stroke or a heart attack, where the person winds up unconscious in what they call, quote, vegetative, you have to wait three months. Instead, doctors are rushing to judgment and they’re giving a prognosis that the person will never wake up or have recovery. And so the doctor then combine that with a recommendation to withdraw life support. And what’s happening is that on people who would live, but be disabled probably, are having their lives ended rather than being given a chance. And according to some experts, this is not uncommon. So it’s a big concern.
Another topic was organ procurement and transplantation. We talked about how organ donation discussion shouldn’t be brought up with people when they’re in the ICU or somewhere, where people are thinking about whether to withdraw life support because you don’t want to have, oh, your death would be good for somebody else in the mix of how people make decisions. And we were successful, the disability community and other advocates, in getting a policy to that effect.
The other topic that we talked about was eligibility for transplants. Because a number of people, in the news, over the last few years, including children, have been denied transplants based on disability. And the Autistic Self Advocacy Network again has played a big role in addressing that. And they have a policy paper and tool kit on their website that I highly recommend.
Another healthcare decision making issue isn’t based on the decisions of individuals or surrogates, but it’s also possible for doctors and hospitals, unilaterally make a decision to take away your life sustaining treatment against your will or the will of your surrogate. And they can do this in many States, most States, although some States have protection. So it depends on what State you live in, what the law is on this. Same with the other topics we’ve been discussing. They’re all pretty much State law issues.
But we have a proposal. Most States now, and most facilities, have an ethics committee. And they have something to say, oftentimes, about what these policies will be, and even what happens in individual cases. So we have a proposal out there, to get disability advocates onto the local hospital ethics committee. And I would encourage folks to get involved in that at the local level.
And then my last topic for the conference was what’s called physician orders, on life sustaining treatment. And that’s a new kind of thing, relatively speaking. It’s several years old but it’s getting more and more popular where statutes are being put together where there’s like a one page bright pink form that can be put on somebody’s refrigerator that encourages them to decline life sustaining treatment. And there’s been, from what we’ve seen, a lot of anti disability bias in the way these forms are being sold, in effect, or people are being encouraged to decline treatment, oftentimes based on anti disability, what if you couldn’t walk, what if you couldn’t talk, wouldn’t you rather not be saved, if you’re going to be significantly disabled. So we’re really trying to challenge the disability bias on some of these advanced care planning documents.
So that was basically what I covered in my remarks. And then we opened it up to questions. We had some video examples of some of these things. And a lot of this is going to go on our conference website in the near future. So you’ll be able to see what you’re going to hear about today with more detail. And with that, I’d like to turn it over to Marilyn Golden, who will handle our next topic.
>> Marilyn: Thanks, Diane. How is my volume?
>> It’s good.
>> Marilyn: Okay. I spoke about assisted suicide laws, making it legal for doctors to prescribe lethal drugs to anyone who, in theory, is terminally ill and requests them. They alter long standing State laws that make it illegal for anyone to take an action to cause death. There are bills to legalize assisted suicide in at least a few states every year. Almost all are defeated. Oregon, Washington State and Vermont have legalized it but half of the States have either defeated bills or explicitly banned it through the work of opposition coalitions that span the spectrum from left to right, led by disability rights groups and doctors. Led by disability rights groups and doctors, and generally including hospice, Catholics, and Right To Life groups.
A number of disability groups on record in opposition are part of NDLA. Key to our efforts, it is legal to get sufficient palliative care, including painkillers. Least understood for anyone dying in pain, it’s legal to have palliative sedation, when the dying person is sedated to unconsciousness as they die peacefully. Knowing this helps a lot of people see that assisted suicide is not necessary.
We oppose this proposal that seems to many, a good thing, starting with reasons related to disability. As Diane wrote, the public image of severe disability as a fate worse than death has become grounds for a deadly exception to laws and policies about suicide prevention. Legalizing assisted suicide means some people, who say they want to die, receive suicide prevention, while others receive suicide assistance. The difference between the two is their health or disability status resulting in death to the socially devalued group. Also the model assisted suicide law in Oregon is based on the faulty assumption that there’s a clear distinction between terminally ill people with six months to live, and everyone else. Everyone else is supposedly protected and not eligible for assisted suicide. But it’s well documented that medical prognoses of a short life expectancy are often wrong.
As an example, we can’t take a poll today; but I bet many people on this call have long outlived a terminal prognosis or know somebody who has. There’s also the danger to people with depression and psychiatric disabilities.
Take Michael Freeland who had a 40 year history of acute depression but received lethal drugs in Oregon. There are many other reasons that impact everyone. Assisted suicide proponents have a mantra, free choice and self determination. But legalizing assisted suicide actually diminishes choice and control, especially in abusive families. Once the lethal dose leaves the pharmacy, there’s no oversight, no witnesses required when the drugs are taken.
Let’s say the patient changes her mind. Someone else putting the lethal dose in the patient’s feeding tube cannot be prevented. Even if the patient struggled, who would know. The request for assisted suicide provides an alibi. Aggravating the situation is an epidemic level of abuse of elders and people with disabilities. Further, there’s a deadly mix to combine assisted suicide with our broken profit driven healthcare system. Direct coercion is not even necessary. It ensures denial or merely delay of approval of life sustaining treatment, it can steer many towards a hastened death.
For example, two people in Oregon, both got letters from the Oregon health plan that the plan wouldn’t pay for their chemotherapy but would pay for their assisted suicide. One of the myths about assisted suicide in Oregon is that it has strong safeguards. Not so. Shopping for another doctor can get around any so called safeguards. And Oregon’s annual reports, highly praised by proponents, actually tell us very little. The reporting requirement lacks teeth. Non compliance is not monitored and abuse is not investigated. We can keep assisted suicide illegal with the involvement of disability advocates like everyone here today. Thank you. Back to you, Diane.
>> Diane: Thank you, Marilyn. And now, we’d like to have Marcy talk to you about what we did on the thing we did on day two, which was to that was kind of the day dedicated to our call, beginning of life issues. And your topic was reproductive technologies. So please go ahead, Marcy.
>> Marcy: Thanks, Diane. So
>> Diane: If you could identify yourself too, from what organization you’re with. I’m sorry I didn’t do that already.
>> Marcy: I can do that. Thanks. I’m with the Center For Genetics and Society. We’re a public affairs organization. We’re based in Berkeley, California. Our mission is working for responsible uses of human genetic technologies and assisted reproductive technologies. And one of our core concerns and actually the reason that we established the Center For Genetics and Society back in 2001 is that we believe that those powerful new technologies should not be used, as some advocates believe they should be, to genetically modify future children and future generations. And that’s a road that we think we should not go down, and that we have described as initiating a kind of high tech consumer eugenics.
So our work and our issues intersect with disability rights issues around two things, really. One is the legacy and meaning of past eugenics programs and the second is around the reproductive technologies, the beginning of life issues, and specifically around prenatal selection technologies. Those are the two topics that our panel that I shared a presentation with Sylvia Yee and those are the two topics that we addressed. So let’s see.
We began the panel, talking about new kinds of reproductive technologies that allow for selection of certain kinds of children that will be and won’t be born. And this is a topic that has been examined in depth by disability rights, scholars and advocates for quite a while. And I want to say that the Center For Genetics and Society and the colleagues, and many constituencies with whom we worked have and one of the people that we actually paid tribute to at the bioethics conference was Adrienne Ashe who recently passed away. Back in 1999 she and Erik Parens wrote the disability rights critique of prenatal genetic testing, which was an influential piece of work. At that point they were examining the technologies of that day, that were used prenatally to make these selections. And those were typically embryo selection practice known as preimplantation genetic diagnosis, also ultrasound and amniocentesis. But PGD, preimplantation genetic diagnosis, which is an embryo technology, was the high tech choice of that day. And that was the technology that enabled the world that was shown in the film Gattica. We started with the presentation with a clip from that movie, showing a world of basically genetic casts, those who are genetically enriched are running the show and other people literally sweeping the floors.
And we talked about how the theme of disability plays out in that film, which I won’t go into right now but which was quite interesting. We briefly talked about some of the newer prenatal technologies. There’s a kind of new carrier screening really that’s being marketed by direct to consumer genetic testing companies, including a new one called GenePeeks that allows you to get a complete genetic test sequencing of potential sperm donors, if you’re going to undergo IVS, and select the traits of the child that you might have with any particular donor. That’s a kind of, you know, interesting phenomenon. But there’s a different one that really is being marketed very heavily, and being adopted very quickly. And it is I think already having a major impact on what it means for how women relate to their pregnancies, and how they understand the so called choices available to them when they’re deciding to terminate a pregnancy, if a test shows that the fetus would become a person with a disability or not to keep that pregnancy.
What I’m talking about here is early fetal gene testing, sometimes called non invasive prenatal genetic testing. The way that this works is by taking a very small amount of a woman’s blood, very early in pregnancy, at eight, nine, or ten weeks, and isolating the fetal DNA from the blood of the pregnant woman. There’s no risk to the woman. There’s no risk to the fetus. You get the results before you’re visibly pregnant. These non invasive prenatal genetic tests are being introduced quite since the end of 2011, there have been four U.S. companies and several outside of the U.S. that have made a big push to corner the market really, basically, on this. And, you know, there’s some advantages to it.
You get these results very, very early in pregnancy. So you do have more chance to really evaluate the results, and think in a truly informed way about what it would mean for you to raise a child with a disability, if that’s what your test shows. On the other hand, these tests are being integrated into prenatal care in a very routine way, just like earlier prenatal tests were, so that pregnant women aren’t really being given full information. And the assumption is you take the test, if you shows any anomaly, you terminate the pregnancy.
Now the interesting thing is that a number of prominent medical organizations representing obstetricians, genetic counselors and geneticists have issued recommendations or guidelines saying these new prenatal tests should not be used as part of routine prenatal care but the advice they’re giving, the go slow advice is up against a very strong commercial force, and is not really being heeded at all.
So after I talked about these technologies, Sylvia Yee talked for some time about the American eugenics movement, the movement in the United States. And very strongly in California, to sterilize people who are considered unfit to reproduce. And this was often aimed at people with disabilities. I’m not going to say a lot about Sylvia’s talk, although I urge you to take a look at the notes that we’re going to be posting on the website that I’m sure Diane and Marilyn will mention. But I did want to just briefly mention the four broad themes that Sylvia pulled out of the discussion that joined her remarks about the URC eugenics movement and the technologies.
One was commercially motivated medical information versus so called objective professional medical information, which of course raises red flags for the disability community. The second theme is individual civil rights and human rights, the right to privacy and free choice against versus the needs of a civil society for diversity, tolerance and universal design. Sylvia’s third theme was fear mongering and imagination by these prenatal tests who raises fear about raising a child with disability but also what we need to be aware of, among opponents of these two tests, who talk about extermination in these programs against people with disabilities.
The fourth theme that Sylvia mentioned is the ideal that scientific and medical advances will improve everyone’s lives and should improve everyone’s lives, against the reality of how medical advances are distributed in the United States, and how healthcare and community based services are provided under programs like Medicare and Medicaid to people with disability and people of all ages. Back to you, Diane.
>> Diane: Thank you, Marcy. That was a really good summary. Finally, our last presenter for this discussion here would be Samantha Crane from Autistic Self Advocacy Network.
>> Samantha: Hello. I’m the policy director at the Autistic Self Advocacy Network. And my talk at the disability rights leadership institute and bioethics concerned the phenomenon of wrongful birth and wrongful life causes of action. These are lawsuits in which a parent, who gives birth to a child with either a genetic or other congenital disability, will file a lawsuit against her or their obstetrician or general practitioner, alleging that the doctor should have detected that the child would be born with a disability. Usually, this is a child with either Down’s syndrome or some other chromosomal disability, or occasionally a child who had who was developing abnormally in the uterus. We saw two major multi million dollar verdicts or settlements in recent years.
One was a child with Down’s syndrome. One was a child born with abnormally developed or differently developed arms and legs. Parents in both of these cases said that the doctor should have detected the disability, either through an amniocentesis or through ultrasound. And they also argued that if they had known, prenatally, that the child would be born with a disability, then the parent would have terminated the child or the pregnancy. As a result, the parents were alleging that they would be that they should be entitled to damages that would cover the entire cost of care of these children, throughout their lifetime. That’s how they ended up getting verdicts that were in the multi millions, because they were basically saying, well if I had known this child would be born disabled, then they would never have been born. And, as a result, we should be compensated in the amount of the entire cost of care of this child.
The problem with these lawsuits I mean there are multiple problems. But the biggest one, from the disability community’s perspective, is that it requires parents to come to court and argue that their child basically should never have been alive. Much of the evidence in these cases follow the various stigmatizing approach for disability, in which the parents the juries are encouraged to believe that the life with a disability is not worth living. It also incentivizes doctors to encourage termination of disabled children because they are seeing these lawsuits. These lawsuits are very… are very much at the forefront of doctors’ minds, if they work with pregnant parents. And those doctors, when they do detect a disability, will, in calling on that sort of body of experience, encourage parents very strongly to terminate a fetus that is determined to have a disability.
It also harms the process of accepting a child with a disability. These are parents who have just gotten a diagnosis of a significant disability for their child. And the first thing they have to do is go to court, and tell a story about how the child’s life will be, you know, full of pain and misery and non integration into the community. And it’s very difficult to say this type of thing in court, and present evidence that would suffice to convince a jury, without internalizing it to some degree. So it can very much harm the parental relationship with their children.
It also although reproductive rights advocates have characterized these lawsuits as a form a way to protect people’s reproductive autonomy, they actually constrict reproductive autonomy by like offering a large award, only to people who would say that they would have terminated a pregnancy. Parents who can’t say they would have terminated a pregnancy can’t be seen to have been legally harmed by the failure to detect the disability. And therefore can’t get the entire cost of care, unless, for some reason, the failure to protect the to detect the disability led to some other form of medical malpractice that harmed the child.
The challenge to reforming this legal system is how to change the law to respect people with disabilities, without harming or being viewed as harming women’s reproductive and other people’s reproductive rights. The State of Arizona, several years ago, proposed a law that would restrict wrongful birth and wrongful life lawsuits. And many civil rights organizations, including the ACLU, raised significant outcry over this, on the perception that this law would encourage doctors to lie to parents, and tell parents that their child did not have a disability as a purposeful means of interfering with parents’ reproductive rights.
We have not found that that’s a common phenomenon in the wrongful birth and wrongful life litigation that we do see. Almost always, the litigation is over a medical mistake, and not over active interference with reproductive rights. But as a civil rights community, the disability community is often very concerned to ensure that they’re challenging disability discrimination without necessarily waiting into reproductive rights policy in general, or the abortion debate.
As a result, the ASN has been working to advocate for laws that will specifically limit lawsuits, based on a child’s disability in which the claim is that the parent lacked access to a prenatal diagnosis, and that this lack of diagnosis to a prenatal led to ability to terminate. We do not want to pass a law that would broadly immunize doctors from interfering with parents’ rights. And we don’t want to pass legislation that will fail to protect other rights, such as parents rights to get appropriate treatment, given a prenatal diagnosis, or to get treatment that is necessary for either the health of the parent or the health of the child. We just want to make sure that courts do not treat unwanted births of children without with disabilities differently from unwanted births of children without disabilities.
>> Diane: Okay. I wanted to let people know that Samantha has to leave probably in about five minutes or so. So if people have questions for her, in particular, this might be a good time for that. Otherwise, in general, we’re opening up for questions.
>> This is Jessica. I want to thank all of our excellent speakers before we go on. And I want to remind everyone, if it works, we’ll keep people on mute. And then if you have a question, hit star 6 to unmute yourself. If that doesn’t work we may unmute.
>> Diane: I’m just going to add something on the wrongful life issue. Wrongful life cases can also refer to a situation involving an infant who is born, and then the question is faced, whether they will receive life sustaining healthcare after they are born or not. And that was a very major issue in some early cases that are often referred to as the Baby Doe cases involving typically people with Down’s syndrome or spina bifida who were denied treatment. And federal rules were developed to set some parameters about when that would be acceptable or not, way back when, called the Child Abuse Amendments Act. Often we think in have not been followed. And there have been cases where, under the category of wrongful life, an individual with disabilities, who are actually being, you know who are still children, have sued for having been say had their lives saved when they were born and the parents have said, you know, well the life shouldn’t have been saved and my child is complaining about being a disabled person. And in one particular case, in Texas, we filed an amicus brief on that, with several other disability groups, including, at that time, AAPD. It was quite a while ago.
So that’s another angle for wrongful life choices.
>> Can I add, in my research for this talk, this is Samantha, by the way, we even found one judicial opinion, in which the judge not only decided, you know not only held that wrongful birth or wrongful life litigation was legitimate, but also basically said that, if a parent did not choose to terminate a pregnancy, then this would be he would recognize this as grounds for the child to sue the parent for exposing the child to a life of having a disability. So when you want to talk about interference with parenting reproductive rights, basically saying that a parent should be held civilly liable for not having for not terminating a pregnancy, it was pretty extreme. Luckily, the State in which this was in California. The State actually passed a law in response to this opinion, making it illegal for a child to sue a parent for not having terminated the pregnancy.
And with that I probably should go. Thank you, everyone.
>> Diane: Thank you. Okay. Now I think we can open it up to any other kind of questions or discussion that people would like to have.
>> Diane, maybe I’ll unmute everybody, just in case that’s the problem. Hold on one second.
>> Hello.
>> Now we can hear everyone. I’ll ask people again, if you are are on speaker, or if you’re in a noisy place or not speaking in general, please go ahead and mute yourself with star 6. And anyone who has a question or comment, please go ahead.
>> (Excessive noise.)
>> I’d like to know with (Indiscernible) how we’re going to access (Indiscernible).
>> It’s impossible to hear.
>> (Excessive noise continues.)
>> The person trying to speak, are you in a car? If you’re in a car
>> Did you hear my question about the conference in Phoenix? You had a question about the conference.
>> (Excessive noise continues.)
>> I don’t think anybody can hear with all the noise. I think you might have to mute the lines and have people
>> Yeah.
>> I thought it was the person with the background noise that was trying to speak. But I’m not sure. Can I ask that person in the car to try to unmute yourself with star 6. Okay. Enjoy the technology. So I will unmute people. Hold on again.
Again, anyone who would like to speak, please hit star 6. We have about 12 minutes it looks like for questions and comments. So we want to hear from folks.
>> Hi. My name is Shelly. And I had an experience in 1985, I had gone for artificial insemination. And had a child that was born with Down’s syndrome. And it was our DNA was studied and it was determined that the process, done by this sperm bank, was the cause. That when I looked at taking action against the sperm bank, the only option that I had was wrongful life. And in my case, life was not wrongful at all. And they said that if I would not say that it was a wrongful life, then I couldn’t sue the sperm bank for even though they didn’t follow procedures. Medical malpractice. And they said my son could choose to sue when he got older. So I gave him the option when he got older, and, you know, he said his opinion was that he has the best life possible. And therefore, you know… but a concern that I have right now is there’s many people adopting children I have a grandchild with hydrencephaly. And people are adopting children with significant disabilities and making money off of the adoptions. A lot of these are church related. A lot of evangelicals. What they’re doing is also they’re not providing any medical treatment that the children need, and they’re allowing the children to die without medical treatment. We just intervened with calling the Department of Children and Families on a case, just last week. But you know, it’s just a big concern because there’s a large movement, within this I guess it’s within some sector of the Christian culture, where they’re doing they’re adopting, and then planning the funerals before the adoption even goes through, getting them donated. I don’t know if anybody has any comments on that.
>> These are adoptions, not foster placements? They’re actual adoptions?
>> They’re adoptions.
>> My God.
>> And I’m speaking from experience, having… you know, having had one of my children gave birth as a teenager to a child with a significant disability, and was insistent that she wanted her child to be adopted and not kept in our family, because of the stigma of giving birth as a teenager. And we found a great adoptive family. But we had 14 families apply. And I found out later that some of those families keep adopting, doing this big plea that they need money to support this child. And then they let the kids die. And we escaped that but so many there’s no warnings. And I’m thinking that we need there needs to be some kind of legislation or something, where… in the case of these adoptions, that there needs to be plans for medical care, and how they’re going to take care of a child this child.
>> Could I respond to that please. This is Carey Ayers. I’m a parent with a disability. My husband and I have a disabled child and we’re pursuing international adoption. I’ve gotten to know the adoption community. I think it’s important to note that that’s definitely the exception to the rule. You know, there is a lot of fundraising that goes on with adoption but it’s also the up front costs are out of reach for most people. I think as a disability community we need to be aware to be careful about how we frame it’s not so much and I total will you see what you’re saying. It’s not so much the seeking of funds. It’s the idea that they have the intent to provide no medical care and there’s the value of life there.
I think for me, even before legislative changes, I’ve been stunned by the fact that my husband and I have completed over 12 hours of training on transracial adoption, which is so important, but we have yet to receive a single hour or minute of required training related to disability, much less like disability culture or value of life. So if we didn’t come from the background that we do we would know nothing. We would be completely on our own from everything from medical care for our son’s disability to what I would ideally like to see which is a cultural piece about disability and how you will raise this child, to develop their full potential as a person with disability. So I would like to see that implemented and required adoption training.
>> I agree with you. I also adopted a child with a disability. And you’re right. There was absolute and I am also a person with a disability. And there was nothing. The word disability was almost not spoken, except in the home study where they live you a give you a list of disabilities that you, quote, will not accept.
>> Wow. Independent Living Center, San José, California. Why, when a prenatal genetic test comes back positive for something like Down’s, why not take the opportunity to introduce the prospective mom to someone with Down’s?
>> Exactly.
>> Instead of, oh, it’s a tragedy.
>> This is Anna in New York, Independence Care System. And a person with a disability. And isn’t what we’re talking about all of this really just another more perhaps profound example of the fact that people with disabilities in general are not are devalued in our society. It seems to me that, you know, as a person who is pro choice, it’s always difficult for me to try to provide the perspectives of disability when talking with my like minded friends and colleagues, who are, you know, certainly right they’re certainly pro choice people, how I am I am pro choice, but that there is not a level playing field when we’re talking about disability, whether it’s with, you know, abortions, wrongful life, or medical treatment, or any of these issues. And I’m just wondering, you know, in terms of even getting the point that was made in I forgot whose presentation, but the point that was made about palliative medicine, and people in pain, and, you know, and end of life care, that you’re really not you know, how do we get this I’m asking the question, does anybody have any information about what is being done about, in this particular area, are there to get the choice aspect of this into what we’re advocating for? Does anybody understand what I’m asking here? I hope.
>> Diane: I think, in a way, one of the big things that we can push is in the arena of informed consent. Because what we can really say is that, in all of these issues, the information that we are expert in, is not at the table. And
>> That’s right.
>> Diane: We need to get ourselves at the table, and force the society at large, and the medical people in particular, to
>> Right.
>> Diane: have an attitude adjustment. And I think that that can make a big difference on all of these, as we’ve been talking about today.
>> And I think your point earlier about getting on these you know, the ethics committees in hospitals, I mean these you know, these are important places for us. I mean we’re not even at the we’re not even on the radar screen about in many of these issues. And it’s you know, it’s frustrating to say the least.
>> Diane: Yep.
>> But I think
>> This is Karen.
>> Is somebody wanting to ask something?
>> This is Karen Snyderman.
>> Hi, Karen.
>> Hi. Maybe this is like everything conversation, a longer discussion. But on the issue of adoption, it seems to me that when people are trying to adopt, and this has been my experience and the experience of other people that I know, who have disabilities there are endless questions about the parents, but not about the fetus or the child. And it seems to me that the… the danger that was described earlier a few minutes ago I’m not saying it’s going to be resolved, but I’m not sure that it’s even obvious to people, when they are trying to adopt. Because if they had say that they would be willing to or happy to accept a child with a disability, that seems to be the end of the discussion. And that discussion clearly needs to be greater, longer, just as the woman before I’m sorry, I forgot her name was talking about how there was no discussion of disability at all, in her experience.
>> Diane: Right.
>> Perhaps that’s more discussion on FaceBook or something like that. I don’t know.
>> Diane: Jessica, remind people about the opportunity to continue the discussion. Is she still there? No. She may have had to sign off.
>> Thank you.
>> Diane: Thank you.
>> Thank you. I was listening to the discussion and lost track of time. I apologize. This is Jessica. As Diane was prompting me I do want to remind people to go onto FaceBook, go to Organizer’s Forum, just like you’ve seen it written. And click light. Please make a comment on what questions you have, what are the thoughts you have, and then go onto Yahoo group, search for Organizer’s Forum, all one word, click join, and then make a comment or put a question on there.
Diane mentioned the YouTube link. We will make sure to send that out. If anyone has other resources that you’d like us to send to the group, we can do that. The transcript of today’s call as well as the recording will be on the website, the NDLA website, disability leaders. Thank you.
A huge thank you today to Diane Coleman for organizing this, as well as our excellent speakers. It was really a helpful call. Our next call will be on Tuesday, July 15, at the same time. We don’t yet have a topic and I will announce that as soon as we do. Thank you again, everybody. Have a great week.
This text is being provided in a rough draft format. Communication Access Realtime Translation is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.