Speaker 3 00:01:01 You for joining disability and progress, where we bring you insights into ideas about and discussions on disability topics. My name is Sam. Thank you for joining us. On today's episode, we are airing the recording of a webinar titled dignity, death, and disability. A discussion. This webinar originally took place in March of 2022, hosted by compassion and choices, a nonprofit organization working in the end of life. Options, movement, compassion and choices. Core mission is to empower everyone to start on their own end of life journey. But Americans living with disabilities, face challenges, accessing needed healthcare services, which can make conversations about the end of life, particularly fraught. Given this reality, it is not uncommon for advocates of medical aid in dying to encounter resistance from some segments of the disability community. Based on concerns about potential for abuse, Rebecca to MD is who facilitates the webinar.
Speaker 3 00:02:13 Originally invited me and Charlene to this event. Although we were unable to make the real time event. We thought this content was important and requested to the rights to play the content. Here. This event featured three speakers. They are Christopher Riddle, PhD, who is the chair of philosophy at Utica university focused on ethics and the dis experience of disability. Seth Morgan MD is the board certified neurologist and disability rights advocate. Brenda Ardo is director of the Raven group, a consultation firm. Dr. Tom will tell more about this during the recording. We hope this airing sparks more important conversation in our community for additional information about compassion and choices. We encourage you to visit their
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Speaker 4 00:03:20 So compassion and choices. For those of you who may not know us is a national nonprofit, whose mission is to improve care, expand options, and empower everyone to chart their end of life. Journey. Today's webinar is being sponsored by doctors for dignity, which is an initiative of compassion and choices. We're a community of physicians from across the country who support a full range of end of life options, including medical aid and dying and who work to address end of life disparities. Before we get started, I wanted to give us a little context for today's conversation. Historically, Americans living with disabilities have faced discrimination and mistreatment by the medical system from forced sterilization to institutionalization. Many of the abuses continued to occur into the 21st century. At the same time, medical advances have greatly increased the lifespan of people with disabilities and provided treatments and services to improve their quality of life.
Speaker 4 00:04:26 Yet challenges remain currently there's little research on the end of life care experience for people living with disabilities. Much of what we know has been obtained from caregivers, where two common themes have emerged. People with disabilities tend to be diagnosed later. And part of this has to do with communication problems, and there's also been challenges addressing adequate pain control in this population. So with this context in mind, we've brought together three experts who will share their knowledge and experience to begin a discussion aimed at, to increase compassion and understanding so that we can become better allies in our mutual quest for autonomy in life. And at the end of life, I'm pleased to introduce Brenda Aradondo. She is a communications consultant with the Reen group and has vast experience both on Capitol hill and in advising nonprofits about strategic messaging and media engagement. In 2017, she was diagnosed with primary lateral sclerosis, a neurodegenerative disease, similar to Lou Gehrig's disease, but much less is known about its progression. Brenda joined us for autonomy, an organization that brings grassroots advocates with disabilities together to advance equitable access to the full range of high quality end of life, healthcare, including hospice, palliative care and medical aid and dying.
Speaker 4 00:06:00 Brenda's joined by Dr. Seth Morgan, who is a retired neurologist living with multiple sclerosis. Seth watched his own parents suffer at the end of life and over his career cared for many terminally ill patients since leaving his practice. Seth has become deeply involved in disability rights advocacy and is a strong supporter of medical aid and dying for terminally ill adults. Finally, Dr. Christopher Riddle is a professor and chair of philosophy at Utica university. His work focuses on distributive justice with a particular emphasis on egalitarianism and disability. In addition, he studies the ethics debates surrounding the experience of disability. So today's webinar will take the form of a structured conversation in three parts, which no doubt will have overlap. I'll be presenting a bit of information at the beginning of each section, just to get set up for the conversation. Part one will be what is disability. Then I'll propose a few questions to get the conversation started. So you're welcome to submit questions at any time. And if we get some good ones, we will include those in our conversation.
Speaker 4 00:07:15 So the first part, what is disability? So just to start us off the centers for disease control defines a disability as any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them. The world health organization has identified three dimensions impairment, which would be, uh, impairment in a person's body structure or function such as the loss of a limb, the loss of vision, memory loss activity, limitations, such as difficulty seeing, hearing, walking, or problem solving, and then participation restrictions in normal daily activities, such as difficulty working, engaging in social recreational activities, voting obtaining healthcare services.
Speaker 4 00:08:13 So when we talk a little bit about the causes of disabilities, um, these are the categories that we tend to think of genetic or congenital disorders such as down syndrome or fetal alcohol syndrome, muscular dystrophy, uh, CBR palsy, developmental conditions, such as autism or ADHD injury such as traumatic brain or spinal cord injury, chronic diseases. An example is dis is diabetes that can cause nerve damage and vision loss. Then acute diseases with perhaps long term effects, long COVID is a good example with cognitive impairment and then neurologic diseases and progressive such as ALS. So even as I read the information on these slides, um, the negative attitude is apparent. The medical perspective can be really translated into ableism, the medical model, views, disability, as something to be treated prevented or overcome. It's the consequence of an injury and it limits the quality of life. So the medical perspective is in some ways able theistic discriminatory against SOC and, and socially prejudice against people, judging them as inferior or having a poorer quality of life.
Speaker 4 00:09:37 And yet disabilities are very common in our community. Um, this is the, uh, percentage of the population that experiences various forms of disability. About 25% of Americans can claim some form of disability based on the, uh, definitions that we heard, the largest one being mobility, disability, almost 14% of Americans. So you can see that there's a wide array of people who are, are managing and dealing and living with disabilities every day. The social model is in contrast to the medical model with a social model, talking about disability. It is the environment and not the individual that is the focus rather than saying, this individual has limitations or shortcomings. It's the environment that is not suited to the needs of the individual. And so the gap between the capacity of the individual with the disability to function and the society is, and the way society is constructed is rooted in bias.
Speaker 4 00:10:42 The Americans with disabilities act, which was passed in 1990 was landmark legislation, uh, aimed at correcting some of these discriminatory actions. And it really protects people in several areas, including employment, transportation, public accommodations, communication, access to state and local government programs and services. One area that was not particularly addressed in the ADA is that a healthcare arena. So I am happy to be able to start this conversation with our guests, the first question. So this might be a good time to widen your speaker panel and, and make your, um, the PowerPoint presentation smaller. But I'm just gonna start off and ask our panelists to tell us how do you define disability and why is it important to define disability who would like to start us off
Speaker 5 00:11:48 Happy to if you'd like, yeah, I think, um, the world health organization contributes a lot to this. I, I appreciate that the definition was put up there. I think the most important thing that happened with understanding that disability is solely not a medical phenomenon is I think it shifts, uh, the nature of responsibility to, to accommodate people with disabilities. I think the old medical way is not only ableist, but I think it, um, it, it places the burden for accommodation or inclusion on people with disabilities. Whereas the shift to acknowledging that society, the way that it's structured in the policies that we live under are such that they actually disable. I think that that implies that everyone has a responsibility to, to address any disadvantage that someone might experience as a result of their disability. And for me, that's the most powerful impact that has happened with the shift away from a medical model or ableist way of thinking. It's about the nature of responsibility to include. And, and I, I love that that has shifted, uh, to society, frankly.
Speaker 6 00:13:05 And I I'll jump in, uh, on that as well. Just thinking about traditional medical training and, you know, I've, I've been at this, uh, um, since the, uh, late seventies, um, the way that medical training was at that point, and I think is still to a great extent, uh, is that medical training views, um, a di a binary dichotomy where you have, uh, quote unquote normal people and quote people with, uh, differences and by definition, differences are disabilities. If they're persistent. Um, the, the problem is that that simplistic dichotomy is what gets us into trouble. Uh, if you're trained to see, uh, an illness and you're supposed to respond to it rather than seeing a person and responding to their needs, that's a big problem. The, the question of, uh, disability, uh, disability is, um, a difference. I, I, I don't like the word disability, frankly.
Speaker 6 00:14:18 It's a difference. And if you ask the people who have those differences, sometimes they do not in fact agree that it's a, that it's a disability. They are happy with the way they are. And, uh, it, it is, uh, sort of the, the medical tradition of, well, uh, if you have a difference, you have an illness. If you have an illness, we have to treat it. And oftentimes the, uh, difference was a difference between the patient and what the, the doctor had. So that I heard so many times doctors who told patients, oh, don't worry about that symptom. And I, I tongue in cheek told patients at the time, well, that means they don't want you to worry about it, cuz they're having the same experience and they don't want you to even think about it. In fact, I think that there's more true in that statement than, than we let on sometimes.
Speaker 7 00:15:09 And hi, this is Brenda. I think it's very important to know that even within our community, we have very different definitions of this. Um, we have those born with an illness for, and we have those who like me, his, no,
Speaker 5 00:15:51 This is Chris. Yeah. I think that's an incredible point because I think, uh, there's a temptation to speak about disability as if those who experience it are a homogeneous group and people can say people with disabilities feel this way. And I think that that leads to some pretty spurious claims being made because, uh, people with disabilities are a remarkably diverse group of individuals who experience things wildly differently. Even people with similar impairments can have wildly different experiences in the way that they navigate the world. So I think we've gotta be careful not to, to speak on behalf of everyone for the reasons that Brenda indicates there's there's many forms of disability and there's many different ways of experiencing it.
Speaker 4 00:16:38 That's kind of a good segue to the next question, which is, is disability and identity or how is it an identity?
Speaker 7 00:16:54 I mean, I would, this is Brenda. I would say that if, whenever the individual wants to defines, if they choose to make it, uh, he part key part of their identity, then that's their choice.
Speaker 6 00:17:21 Yeah. I, I don't think it's an identity. I think it's, um, uh, it's a difference again, I don't think that, you know, you have to, uh, use, uh, a disability, uh, label as an identity. I think that's just a function of the situation that that person is living with and, and it may or may not be a problem based on how they view it.
Speaker 5 00:17:50 Yeah. I think blending those two points together here, I think. And the previous point about it not being a homogeneous community. Right. I think we have to be careful not to assume that someone identifies as being disabled or identifies around a particular kind of disability because they may very well not, but they also may choose to, to identify around a particular identity for a wide variety of reasons in the same way that people choose, uh, other aspects of their identity. Uh, I have some colleagues whose identity is heavily rooted in being a professor. And I have other ones whose identity is not heavily rooted in being a professor. And, uh, the ones, unlike me who iden don't identify as one are probably living a healthier lifestyle. If for being honest,
Speaker 4 00:18:42 Do you think that there's any, um, resistance to identify as having a disability based on discrimination or bias or stigma?
Speaker 5 00:18:56 I love that. I'll take that if I can. Oh, sorry. Yeah, go
Speaker 6 00:18:59 Ahead.
Speaker 7 00:19:01 You're fine. This is when I know that from my own personal experience, I parents, I hesitated for years. So identify as, uh, woman. I mean, I'm Latina, I'm Jewish. I only am a woman. I already have so many bosses, but potentially working against me. But now that I, I identify as a, the same woman, I find that empowering. Um, I now know, and I know sad how my life is and I I'm in a position to huh. More than, um, in the community.
Speaker 6 00:20:17 Yeah. I, you know, I think that that labels in general are, are not things that really help us most of the time. Um, I think that you may wanna identify, uh, as having an, a disability, if you're trying to raise awareness, uh, about a particular issue and that that's a, a way of using that label to your benefit, but generally labels, you know, it's sort of, uh, it's, it's the same thing that, uh, results with the whole issue of ableism and, uh, uh, racial discrimination and, you know, putting labels on people, uh, are, I'd say most of the time, not particularly beneficial.
Speaker 5 00:21:03 Yeah. Um, again, wow, everyone's sort of bridging these things nicely. Uh, so, so a brilliant legal theorist, Martha minnow talks about what she calls the dilemma of difference to use the phrase that Seth has been using here. And she says, uh, if you're different, you can do one of two things. Then it's genuinely a dilemma, which one you should do. One of them is you can acknowledge that difference, seeking accommodation on the basis of that difference, but you thereby subject yourself to risk the people who might be discriminating against. You can say, see, you are unable to do things as a result of this difference, but if you fail to acknowledge that difference to identify with a particular kind of experience, then of course you fail to get the accommodations as a result of the way that, which you're experiencing things which creates a genuine dilemma for a good deal of people. Um, you're sort of darned if you do, and darned, if you don't in many circumstances
Speaker 4 00:22:05 And an even worse term, I think that is a remnant is handicapped. Oh. And that's really become ingrained in our, you know, gov handicapped, parking and handicapped access. And yeah, that may be the next frontier is trying to change some of this language.
Speaker 6 00:22:24 Uh, handicapped is, is a term that, uh, in, in the disability rights community and disability community, generally, if you want to call it that, um, is it, it's a swear word, it's the kind of word that you don't want even associate yourself with because it of its history of basically, you know, you're, you're handicapping, you're sort of tapping the person on the head and, and, and, and making them, uh, dependent on you as the quote unquote handicap person, uh, in order to exist. And, and that's a real problem.
Speaker 4 00:23:06 I'm gonna move on to the next question, which is, um, it's gonna be relevant to the next section when we talk more specifically about medical aid and dying, but do you consider all terminally ill individuals disabled? Um, I'm not sure whether that, how that works with in, in legal terms, whether you can be can a person, for example, at the end stage of cancer, be considered a disabled person. Um, I'm interested in your thoughts about that.
Speaker 6 00:23:36 Well, I, I'm gonna jump in first because you know, the, the, one of the interesting statistics that I learned early on is that if you take a community, uh, of, uh, just adults and you take everyone over the age of 65, according to the guidelines for, uh, the way you determine if people have disabilities for, I guess, the government, um, fully a third of those people at age 65 are quote unquote disabled. It could be that they have vision problems. It could be that their hearing is off it's bad knees and they can't walk. Uh, it can be just, you know, it can be so many different things. And as you age further, the per percentage goes up even higher. So, you know, I think that, um, yeah, I think on a certain level you could consider, uh, uh, someone with an illness as being disabled, but the question is, does that take away their, um, autonomy and their right to choose for themselves? Uh, which sometimes is the problem with the, with the label of disabled cuz cuz uh, certain groups will key in, on that label and, and use it, uh, to try and control, uh, the people who self-identify as having disabilities.
Speaker 5 00:25:06 Well, I'm gonna move this is Chris there? Oh,
Speaker 4 00:25:08 Sorry, go ahead, Chris, go ahead.
Speaker 5 00:25:09 I can be, I can be brief then. Uh, I, I think it also behooves us to understand that oftentimes the proper way of understanding disability is that it exists on a continuum. Right? I think certainly a lot of people who are experiencing death might also experience impairment and as a result of that impairment disability, but certainly not all, I think not all people who receive a terminal diagnosis, uh, are also experiencing disability. Uh, I think it differs wildly across the board, even though at the end of life. Um, most people, unless they sort of die tragically and quickly will experience some form of disability, but not all certainly
Speaker 4 00:25:57 I'm gonna shift to, um, a, the more specific topic that, uh, I think a lot of people in the call are waiting to hear about, which is medical aid and dying. And I'm gonna give a little bit of a setup for this as well. Um, starting first of course, with a definition, um, medical aid and dying is a very specific medical practice in which a terminally ill adult who has decision making capacity may receive a prescription medication that they may self ingest for a peaceful death, if and when their suffering becomes unbearable. So the limitations already, um, just the simple definition you can see that people with, for example, dementia, or who have any sort of cognitive impairment would automatically not be eligible for this. And so that's an important thing to remember the criteria. Other are basically you have to be an adult that means at least 18, and you must have a terminal illness with a six month prognosis, which as you know, is the criteria for enrollment in hospice care, you must have the capacity to make informed decisions and, and understand all your healthcare options.
Speaker 4 00:27:07 And then you must have the ability to self administer the medication. So how this appli there's really nothing in the law that says anything about disability. A disability is not necessarily a reason nor is it an exclusion when you talk to, uh, we've we've done surveys before and asked particularly if someone who considered themselves to be living with a disability supported this option and actually two out of three in surveys from Connecticut, New Jersey and Massachusetts all indicated support. And yet, um, we do hear a lot of objections when we, uh, when we try to move legislation around the country, we see a lot of, uh, potential, the objection being there is potential for abuse and coercion, particularly of people living with the disabilities and that that might be coming from insurers providers, families, or the government. And I think that that concern has been addressed through some of the safeguards that were, have been included in medical aid and dying legislation.
Speaker 4 00:28:21 These safeguards in part are to reduce the risk of that kind of abuse or coercion. So it requires two physicians to evaluate the patient, confirming the prognosis, the decision making capacity, the ability to self-administer discussing all the alternatives, referring the patient for hospice, the gold standard. You know, we want people at the end of life to be receiving a full array of hospice care. Then in addition, there are reporting requirements for physicians and pharmacists and documentation in the medical record. Um, then there's also very specific informed consent laid out in the law. And I think south would probably agree with me that doctors get obtain con informed consent all the time and they do this anyway. But I think putting this in the legislation, reassures people, especially lawmakers that this will be part of an evaluation. So a, a complete discussion of all the alternatives, risks, benefits, outcomes, referral to hospice, ensuring there's no coercion, nobody is forcing them or requiring them or convincing them to participate and that they have the right to rescind this at any time.
Speaker 4 00:29:35 So they're completely acting of their own volition. And this has gone through twice with two different, um, clinicians. Then in some states, there are even waiting periods, imposed, waiting periods, be between a first and second request waiting periods before a prescription can be written. And then I, I like to add that in most instances, patients who request medical, aiding dying are in a hospice setting. And like I said, that's the gold standard. And that really does add another layer of protection because you've got a whole team and interdisciplinary team of professionals focused on meeting that patient's need, making them comfortable, improving their quality of life and supporting their family. And so that, I like to say, hospice is the place where they identify abuse. That's not where abuse happens. So, um, I think those are all sort of elements of safety that are built into the way medical aid and dying is structured.
Speaker 4 00:30:32 So the first objection was this is potential for abuse. The second objection is more, um, individual it's the, the notion that medical aid and dying devalues people living with disabilities and implies that having a disability at the end of life is equal to poor quality of life. It implies that disability is undignified, um, and it sanctions having a disability or feeling like a burden as a legitimate reason to die. So those are the, those are the kind of the things that we hear from, um, some loud opponents in the disability community. And so I think this is a great opportunity to hear from the three of you who I know all have, um, you support medical aid and dying as an end of life option. And so, um, first question just to get us going is do medical aid and dying laws place the disability community at risk.
Speaker 6 00:31:34 Uh, if I can jump in first here, Rebecca, you know, I, I would say quite quite the opposite, I'd say that the medical aid and dying laws are protective, uh, that, that without them patients, uh, do not have, uh, uh, any protection, um, you know, when I was in practice and when I was treating physicians for over 20 years, um, it was sort of a, um, a, a surreptitious way of dealing with people who were terminal because, um, oftentimes, uh, if they were having a lot of pain, they would get, uh, what eventually became terminal sedation, which was, uh, you were put into an intensive care unit. You were given more and more pain medication until control was achieved, or if not, then, uh, there would be a end of life, uh, event. Um, the, the thing that is different about this, uh, versus what the law is offering is that there is no input from the patient, whether they want this done, whether this is something that they would want to consider.
Speaker 6 00:32:51 And if anyone is consulted on it at all, it's a family member. So if you're worried about, uh, people not speaking up for their loved ones, uh, I think the current situation is more dangerous because there are no safeguards. Uh, in fact, uh, all these safeguards allow a person to make a decision. Now that does not mean that anyone is going to be forced to use the law, uh, to end their life. It is simply providing an option. And for those who either for religious reasons, or for whatever personal reasons don't wanna, uh, make, uh, take advantage of the law, then there's no, no one who's gonna force them to do it. It's, it's purely self-determination. Um, and you know, it, it, to me, uh, is, uh, ludicrous to say, well, this is gonna be used for, uh, euthanasia of people with disabilities. Well, you know, at this point of people with disabilities and people in states where these laws are not available, uh, have no protection, this is purely what happens in hospitals and what happens, uh, informally at this point. Uh, it is basically putting a structure around it, which allows for more protection. I think if anything, the medical aid and dying laws are, uh, beneficial to people who are, are, are most, uh, uh, at danger for being abused.
Speaker 5 00:34:23 Yeah, I agree. I think that's beautifully said sad, uh, Dr. Morgan, but yes, no, but <laugh>, uh, I also think like, like the evidence is, is not there to suggest that any abuse has happened. There have been systematic studies in Oregon that demonstrate that this is not the case, Dr. Toman referred to the vast majority of people already being in hospice settings. Some numbers suggest upwards of almost 90% of the people. So there's a diff uh, a distinct set of safeguards to get into hospice care in the first place. And then you've got extra people who have sort of already passed the threshold to get into hospice care, who are then asked again, uh, and within medical ethics literature, it's really quite funny because there were predictions of dire consequences, emerging, and a good deal of people who have had a tremendous amount of integrity and published in public forums, a statement saying, I expressed concern over abuse of these safeguards and you know what, there's no evidence to suggest that any abuse of the safeguards that have been established has occurred. So it is this really remarkable thing where people identified these risks,
Speaker 4 00:35:36 But they've just not happened. One question that keeps popping up in the Q and a repeatedly is the concern about the, the limitation in having to self-administer. Um, so I, Seth, you look like, you'd like to comment on that. I, let me just co add to that, that, um, you know, Oregon has had this law in place for the longest 25 years. And we know from the disability rights Oregon organization, that they've not had a single complaint of anyone living with a disability who feels they have been, uh, abused or coerced. However, they have had some complaints that the law is discriminatory because it requires self ingestion. Um, how do you respond to that?
Speaker 6 00:36:25 I, I absolutely agree to that. I, I, I, with that, with that position, I think that, um, perhaps the definition of self administration needs to be, uh, reexamined. Um, for instance, if you cannot, um, physically, uh, attach to an NG tube or nasogastric tube and take the medication that way, or if you cannot swallow the pills, um, is it permissible to, um, control your own IV infusion by pushing the button when you feel you want to, uh, is that self administering? I think the, the laws are unclear, uh, at this point, the answer is no, and the laws are designed to protect people more than anything else. So the, the, the, the knee-jerk response has been, if you can't self administer, um, we're not gonna let you administer, uh, I think we need to redefine what self administration is. And I think legally it has to be looked at in more detail because I agree that, uh, there are a lot of people who cannot follow the letter of the written law, uh, the way it's currently, uh, uh, available. And I think they should be allowed to make their own choices as well.
Speaker 4 00:37:49 Uh, I just wanna jump in and say that, um, what, what we've learned from some of our colleagues in Oregon is that, uh, actually ALS is the second most common diagnosis of people who use medical aid and dying so people can receive assistance. So for example, family members can, can manage the medication, can mix it up, can, can put it if the patient can suck and, you know, suck and swallow, then they can participate. And there actually have other ways that they can also, um, manage to self administer without having to do every step of the process themselves. So they've actually had pretty good, um, experience in Oregon with ALS as just one example, however, there a window of opportunity. And if you wait too long, you may not be able to self administer. So that's always the challenge too. So the next question is addressing the other complaint or the other concern that we get do medical aid and dying laws, send a message or perpetuate an attitude.
Speaker 4 00:38:53 And I, I know that when we hear, um, folks testify before the legislature, they'll tell their personal stories. And often they'll talk about the symptoms that they, or their loved ones have experienced at the end of life. And sometimes that is couched in terms of capacity to do various activities. They're be, they can't get out of bed or, you know, they can't toilet themselves. And, and there are people living with disabilities who have that, who experience that through their whole lives. So they may hear that and say, that's an insult to me. Um, because you are talk, you know, you're saying that that is a fate worse than death, when that is a part of what I've lived with my whole life.
Speaker 5 00:39:38 Yeah. I'll, I'll step in here. So this is something that I work a good deal on. And it's something that I've been trying to measure, because you can measure if abuse has happened, like we talked about before, but it's really difficult here. And so one of the tactics that I'm employing is I'm examining, uh, what's called disability associated health expenditures. My thought is if people with disabilities are being devalued as a result of this, then in jurisdictions where aid and dying is permissible, we should be spending less on services for people with disabilities, because of course we're disrespecting them. There's an attitude that people with disabilities lives are not worth, uh, their non-disabled counterparts lives or not worth the same. And I've actually found the exact opposite has emerged. So Oregon, as you say, just had this law for 25 years. Uh, the percentage of disability associated health expenditures is 40% of all health related expenditures.
Speaker 5 00:40:40 There that's only vested by two other states and indeed no state that has legal aid and dying at the time of this study anyway, had less than the national average of disability associated health expenditure. And from 2003 to 2015, the growth in that expenditure was 28% nationally in Oregon. It was 64%. So indeed the sort of provision of services and expenditures on people with disabilities have gone up much, much faster in states without it. So that's leading to me, that's leading me to conclude that, gosh, it doesn't appear as if that there's values within these states that correspond with the devaluing of people with disabilities. I think if they, those values were present, the ways in which expenditures and public policy was created would reflect those values. And we just don't see that happening. We see the opposite.
Speaker 7 00:41:41 Hi, this is Brenda. I think whenever I have someone who is not believing mental in, in dying me, I tell them that the difference the he difference and that we is now, when now is that you are not criminal. Yes, you may have symptoms that are similar to someone who wants in time, but you are not, you wanna permanently. Um, and you know, on the social side, it almost is in something to me when he say in minimal, in, in dying loss me, I think its point the, the opposite. If you want an opponent of autonomy for any community here imp that that individual or community is Al to make their choice, it wants country to want the, this community as far more taking the right to make our own choice when we are given the information and some more our community needs and the term.
Speaker 6 00:43:53 Yeah. I, I, I think that's a great point, Brenda, you know, and I'm sort of a, a, a corollary to that is, um, we've gone from, uh, being attacked by, uh, I, I use the word carefully here. I think it is an attack, uh, being as people with disabilities, being attacked from, um, quote unquote, well bodied individuals to being, uh, the brunt of criticism from other people with disabilities that are speaking, I think based on not their disability be, but based on other, uh, societal issues that may pertain to them. And, and again, I, I feel that it's, um, it, it's not an honest criticism when a group, uh, that has a, um, uh, a, a, uh, board of directors takes a position, uh, based on, uh, their POS their views, uh, rather than allowing each individual with a disability to make their own choice, which is what I would think I would like to see all these organizations just become neutral and say, you know, it's, it's a personal choice. It's something that, uh, should be, uh, should be a, a, a person making for themselves, not something that, uh, we as a group claiming to speak for all people with disabilities is, is decided
Speaker 5 00:45:32 Yep. How infantilizing and insulting to suggest that anyone needs to be protected from themselves. You want to talk about perpetuating stigma or harmful attitudes against someone. Why don't you deny them the opportunity to make choices, perhaps the most important choice that they'll ever make in their entire life as a result of the perception that, that they're not in a position to make that choice for themselves, what a remarkably damaging thing to say about anyone,
Speaker 4 00:46:03 You know, I do. I also do go back to what I talked about a little bit at the beginning, which, which is the very real history of discrimination within the medical community. That is a very real thing for people who, um, of, uh, who as early as 20 years ago, and I would guess 10 years ago, and maybe today. So the, the atrocities of the past were, were much greater, but some of the discrimination continues. And so how do we overcome that? And maybe what, what do we need to do to try to overcome that fear? Some of it, which is probably real. I mean, that is how do we overcome that fear? How do we change the healthcare system, um, to help everybody feel that they can trust the, the medical community to have their best interests at a heart?
Speaker 6 00:47:06 That that's a, that's a, I think the million dollar question, how do we, how do we, you know, again, I think just as you have, uh, diversity within, uh, individuals with disabilities, uh, quote unquote, um, you have, uh, differences within practitioners and within any other segment of society. So, you know, I, I'm not sure that there's an easy answer to your question. I think it's, uh, I would like to just see, as I said, a more hands off approach and leaving it to the individuals to choose, rather than trying to, uh, lockstep, get everyone with disabilities, uh, to, uh, follow a certain path. I think it, I think that each person is gonna have their own opinion about things. And I think that, uh, it's dangerous when you dichotomize between yes and no, or healthy or unhealthy just as, as medicine was doing for, for ever.
Speaker 4 00:48:06 I wanted to go, oh, go ahead, Krista, do you wanna speak to that?
Speaker 5 00:48:12 I don't know what the answer is. <laugh>, uh, we have to do better. That's what the answer is. We have to do better. And I think it's important to note that that there's a support people with disabilities or aid in dying narrative that gets advanced. And it's a false dichotomy. Everyone here wants to increase social services and inclusion for people with disabilities. But also everyone here is also supporting aid and dying. These things are not mutually exclusive. We've gotta do better, and we can do a lot better as you identify, but these things are not at odds with one another. And I think that that's a narrative that's been advanced for so long, and it just couldn't be further from the truth.
Speaker 4 00:49:02 And, and I, there's such a wave as we, as our population ages, we're also having more and more people with limitations, and we don't have much research about what their end of life experience is. Like. I think we need a lot more research and we need a lot more investment maybe in, in trying to understand and improve people's end of life experience who are living with disabilities. So I'm gonna move on to the next section, which is dignity, which is a very loaded word. And the definition of dignity in the, in the, uh, dictionary is the quality or state of being worthy of honor and respect. And so dignity is sometimes a, a triggering word for folks. Um, death with dignity is the name of the Oregon law and other laws. Um, Washington state, Washington, DC. We have kind of pulled back from using the term death with dignity, uh, compassion and choices in part, because there was an implication that this is the way you die with dignity.
Speaker 4 00:50:12 Um, whereas everybody has their own individual definition of, of what that means to die with dignity. So we didn't wanna feel like we had a, uh, uh, you know, we had claimed to that term. I've also though heard it come up a lot, um, where, when there's been testimony against medical a to nine concerned that medical aid and dying in and of itself is saying, it's the way you're living at the end of life is undignified. And therefore, a reason to be able to die. I just wonder how you all react to our use of the term dignity, what you think about dignity and, um, how it fits into this conversation.
Speaker 5 00:50:57 So I can jump in first there, I guess. Um, I think so often we talk about dignity as, uh, a set of conditions that must hold in order for one to not be in a state of a lack of dignity. We talk about people missing out on things and thus causing indignity here. But I think we also need to recognize that dignity is not just something that can be lost. Dignity is something that can be gained. So we want to talk about dying with dignity. I think one way in which to suffer an indignity goes back to what everyone had been talking about before, and that's to be denied autonomy over your own body and the own care that you received. So part of what it can mean for not everyone, but some people certainly for me, what it would mean to die with dignity is to die with having choices over the sorts of care that I receive or don't receive. And the sorts of death that I experience. We so often talk about as, as if it's just something to be lost, but dignity, I think, properly understood is something to be gained as well through enabling people and empowering people to make choices of the kind of care that they wish to receive.
Speaker 6 00:52:12 Yeah, I'll jump in as well. I, I think you're absolutely right. And, you know, dignity to me is a very vague term. Um, it is, uh, certainly something that, uh, is a personal, uh, definition for each person. There's no, no one, it's not as if someone is gonna be the decider, uh, and the judge and say you're dignified and you're not dignified. It is something that is an internal choice that you decide for yourself, what is dignified and what is, uh, not what you would consider dignified. And, and again, uh, for many people, um, it may be that, uh, uh, the option of, um, uh, uh, at the end of life, uh, controlling discomfort through controlling the mode of, uh, death, uh, is not something they'd want and that's fine. That's dignified for them. Uh, however for other people, the dignity may be, uh, the autonomy of being able to choose in the terminal situation where, uh, life for them, uh, is limited in terms of scope and time. Uh, and they want more control of where and when their life ends, you know, wanna be around, uh, other people that, that they love when they, when they have this transition occur. Uh, it, it's, it's a very personal choice in my opinion.
Speaker 7 00:53:48 Hi, this is Brenda. I think the, and, um, is personal you how to die with dignity. Um, and before we, and, um, I noticed that there are one few individual with this similarities on our, thank you for joining. If you would like to learn more about us, more autonomy, please email us more org, honey.
Speaker 4 00:54:43 Thanks for that, Brenda. I'm gonna, uh, I see that we've, we've done a, I'm gonna skip to the end here at this point, unfortunately, because we've, we're running out of time, but I also encourage, uh, exactly that to find out more about us for autonomy. And if you are interested in getting more engaged in medical aid and dying, um, check out compassion and choices, you can sign up to be a volunteer. And also a reminder that we operate on individual contributions of folks like you. So if you appreciate this webinar and would like to continue to support our work, a donation of any amount is greatly appreciated. And finally, just to be sure to check out our website, compassionate choices.org, and there's a lot of information on that. You can sign up to volunteer, get in touch with any of us, um, for more engagement in all the work that we do thank you to this incredible panel, um, what an incredible set of brains and, uh, articulate thoughts. And we, we can't thank you enough for taking the time to do this webinar and start this discussion. I don't think it's over, but I think it's, it's kind of giving people a good idea about what is the nature of some of the, some of the concerns and some of the debate. And you've all been just done a fabulous job of answering these questions. So I thank you, everyone out there as giving you their silent applause. Um, we really appreciate your engagement and look forward to doing more with you all in the future.
Speaker 4 00:56:16 Thanks everyone.
Speaker 3 00:56:18 Thank you for joining disability and progress. We hope you've enjoyed this episode of our prerecorded webinar featured from compassion and choices on dignity, death, and disability.
