Latest / Health Ethics Podcast / Neurodiversity: What it is and What Happens Now

Transcript

Neurodiversity: What it is and What Happens Now · Health Ethics Podcast

• 0:08
  Speaker 1: Welcome to Health Ethics, a series of conversations with leading
• 0:12
  Speaker 1: experts about ethical considerations associated with health and healthcare, both
• 0:17
  Speaker 1: locally and globally. I am Brian Pilkington, Professor of Bioethics
• 0:21
  Speaker 1: in the Department of Medical Sciences at the Hackensack Meridan
• 0:24
  Speaker 1: School of Medicine. This series, like its predecessor, which focused
• 0:29
  Speaker 1: on the COVID nineteen pandemic, relies on the idea that
• 0:32
  Speaker 1: challenging ethical issues are best addressed by folks from diverse
• 0:36
  Speaker 1: backgrounds practically reasoning together, and complements the Health Ethics series
• 0:41
  Speaker 1: with its panel of leading experts from medicine, nursing, politics, economics, philosophy,
• 0:47
  Speaker 1: and the law. Thank you and enjoy the episode. It
• 0:59
  Speaker 1: is my great play today to speak with the net
• 1:01
  Speaker 1: Elster and Kahan Parsi about bioethics, neurodiversity, and the current
• 1:07
  Speaker 1: social and political climate. The net Elster is professor at
• 1:12
  Speaker 1: the New Swinger Institute for Bioethics and Health Policy at
• 1:16
  Speaker 1: Loyal University Chicago Stritch School of Medicine, where she teaches
• 1:20
  Speaker 1: a variety of courses in areas related to law, pediatrics,
• 1:23
  Speaker 1: oral health, genetics, and professionalism, as well as supervising the
• 1:27
  Speaker 1: graduate programs, writing courses, Master's capstone course, and doctoral capstone courses.
• 1:33
  Speaker 1: She has extensive experience in legal, public health, and ethical
• 1:37
  Speaker 1: issues relating to women's and children's health, and has spoken
• 1:40
  Speaker 1: nationally and internationally on these subjects. She is author of
• 1:44
  Speaker 1: numerous articles on the legal, health, policy, and ethical implications
• 1:48
  Speaker 1: of a range of public health issues, and has appeared
• 1:51
  Speaker 1: on such media staples as CNN Good Morning America, The
• 1:54
  Speaker 1: Today's Show, NPR Chicago Tonight, and now, of course, the
• 1:59
  Speaker 1: Health Health Ethics Podcast. She's also been quoted in Forbes,
• 2:03
  Speaker 1: Inside of the Cut, and BMJ. She serves as She
• 2:06
  Speaker 1: has served as the editor for the Journal of the
• 2:09
  Speaker 1: American College of Dentists, and in twenty seventeen received an
• 2:13
  Speaker 1: honorary Fellowship from the American College of Dentists, the highest
• 2:17
  Speaker 1: honor that can be bestowed on a non dentist. Kahan
• 2:21
  Speaker 1: Parsi is a tenured professor of bioethics and health policy
• 2:24
  Speaker 1: at the Newswinger Institute for Bioethics, Loyal University Chicago, where
• 2:29
  Speaker 1: he directs the graduate programs in bioethics. He is the
• 2:32
  Speaker 1: moderator for Loyola Bioethics Live and was named Graduate Faculty
• 2:36
  Speaker 1: Member of the Year at Loyal University Chicago. He holds
• 2:41
  Speaker 1: the Health Ethics Consultant Certification, the h c C Credential,
• 2:48
  Speaker 1: and has published extensively in a variety of areas in bioethics,
• 2:52
  Speaker 1: touching on clinical ethics, medical ethics, education, professionalism, professional ethics,
• 2:56
  Speaker 1: global health and justice, media and bioethics, the history of
• 2:59
  Speaker 1: medicine and bioethics, as well as autism and neurodiversity. He
• 3:03
  Speaker 1: has held numerous leadership positions, most notably as the President
• 3:07
  Speaker 1: of the American Society for Bioethics and Humanities. And it
• 3:10
  Speaker 1: may be worth mentioning given the conversation today that professors
• 3:15
  Speaker 1: Elster and Parsi are a married academic couple. Welcome Nanette
• 3:19
  Speaker 1: and Kaihan to Health Ethics. I'm so glad that you're
• 3:22
  Speaker 1: here to speak about bioethics and neurodiversity. So you've recently
• 3:27
  Speaker 1: co authored a few articles on supported engagement for neurodiverse adults.
• 3:32
  Speaker 1: Let's take a step back. Can you first tell our
• 3:35
  Speaker 1: audience many might be familiar, but before we get into
• 3:38
  Speaker 1: supported decision making and supported engagement, what is neurodiversity?
• 3:42
  Speaker 2: Neurodiversity It's an interesting concept, and what it boils down
• 3:48
  Speaker 2: to is that just like we have terms like ecodiversity biodiversity,
• 3:54
  Speaker 2: which pertains to our environment and pertains to all the
• 3:59
  Speaker 2: different a species that inhabit the earth, neurodiversity suggests that
• 4:05
  Speaker 2: human beings brains are wired differently and that we all
• 4:10
  Speaker 2: don't share the same kind of neural framework in dealing
• 4:16
  Speaker 2: with the world and understanding the world, in engaging with
• 4:19
  Speaker 2: the world, communicating with one another. So neurodiversity is I
• 4:24
  Speaker 2: think an important conceptual framework that was developed in the
• 4:29
  Speaker 2: late nineties by an Australian sociologist named Judy Singer as
• 4:33
  Speaker 2: part of her graduate work, who was actually in her thesis. Now,
• 4:38
  Speaker 2: some others have argued, some artistic advocates have argued that
• 4:42
  Speaker 2: they actually came up with this notion back in the
• 4:44
  Speaker 2: mid nineties among chat groups and different kinds of listserves,
• 4:49
  Speaker 2: and so you know, I just want to give them
• 4:51
  Speaker 2: credit as well. But I think Judy is viewed as
• 4:53
  Speaker 2: the person who really kind of popularized this term neurodiversity,
• 4:58
  Speaker 2: and I think it's a powerful term because it gets
• 5:02
  Speaker 2: away from the strict biomedical model of thinking about different
• 5:08
  Speaker 2: neurological quote unquote disorders and that we think about these
• 5:13
  Speaker 2: issues more as potentially identities, and so I think it
• 5:16
  Speaker 2: is it can be a very liberating way of looking
• 5:19
  Speaker 2: at these issues.
• 5:20
  Speaker 3: And I think just to add to that, it also
• 5:23
  Speaker 3: creates a little bit of a social movement and perhaps
• 5:26
  Speaker 3: you know, brings this into the realm of even a
• 5:28
  Speaker 3: civil rights movement.
• 5:30
  Speaker 1: Helpful framing and description of what we mean when we
• 5:32
  Speaker 1: use that term, and sort of situating it socially and politically.
• 5:36
  Speaker 1: So before we sort of talk about how you both
• 5:40
  Speaker 1: became interested in this, in this topic and doing bioethics
• 5:43
  Speaker 1: work in this space, what is supported decision making and
• 5:47
  Speaker 1: why is it relevant for neurodiverse adults.
• 5:51
  Speaker 3: So, supportive decision making is sort of an evolving legal concept.
• 5:56
  Speaker 3: You know, we have shared decision making we talk about
• 5:58
  Speaker 3: in bioethics. It all relates to that process of informed
• 6:03
  Speaker 3: consent and respect for autonomy. So when we first started
• 6:07
  Speaker 3: writing about this, oh, you know, a little over a
• 6:10
  Speaker 3: handful of years ago, two states recognized the legality of
• 6:15
  Speaker 3: supported decision making and what it means. It's a concept
• 6:18
  Speaker 3: that takes you away from guardianship, which tends to be
• 6:21
  Speaker 3: very difficult to change. It's a legal process. It can
• 6:23
  Speaker 3: be arduous. It really does remove a lot of autonomy
• 6:28
  Speaker 3: from the individual for whom a guardian is appointed so
• 6:32
  Speaker 3: and it often pertains to every facet of their lives.
• 6:36
  Speaker 3: Supported decision making also can apply to every facet of
• 6:40
  Speaker 3: one's life. But the individual is still responsible for their
• 6:42
  Speaker 3: own decisions. May suffer from an intellectual disability, for example,
• 6:47
  Speaker 3: and in some states that is the requirement, but we
• 6:49
  Speaker 3: move from two states to now nearly half the states
• 6:52
  Speaker 3: in the United States recognize this concept in different ways.
• 6:56
  Speaker 3: But what it does is it allows for the individual
• 6:59
  Speaker 3: to pick a person of their choosing whom they trust.
• 7:02
  Speaker 3: Doesn't have to be a family member like we think
• 7:04
  Speaker 3: of in surrogate decision making. There's no hierarchy. It could
• 7:07
  Speaker 3: be a friend, it could be a colleague. It's someone
• 7:11
  Speaker 3: they trust, and they make decisions in conjunction with that
• 7:14
  Speaker 3: person who has access to the information. It may not
• 7:17
  Speaker 3: just be health information. It may be about housing, it
• 7:19
  Speaker 3: may be about employment. But at the end of the day,
• 7:23
  Speaker 3: the individual is still responsible for making that decision. And
• 7:28
  Speaker 3: it recognizes that capacity can wax and wane, and it
• 7:32
  Speaker 3: also recognizes that we may have capacity for some decisions
• 7:36
  Speaker 3: and not others. And so that's where that concept has evolved,
• 7:40
  Speaker 3: and it's continuing to grow and really is designed to
• 7:44
  Speaker 3: move away from the rigidity of something like guardianship or conservatorship.
• 7:51
  Speaker 1: That really helpful description. It seems like two very strong
• 7:54
  Speaker 1: points in favor of supported decision making as opposed to
• 7:58
  Speaker 1: some of the other things that we've additionally talked about
• 8:01
  Speaker 1: in bioethics, both centering the person but also stepping away
• 8:04
  Speaker 1: from which exists in certain states, right, certain hierarchical decisions
• 8:09
  Speaker 1: where I mean the case we talk about with medical students, right,
• 8:12
  Speaker 1: the child flies in from out of town, hasn't seen
• 8:15
  Speaker 1: the patient in twenty years, but says do everything you
• 8:18
  Speaker 1: think well technically according to high So this sort of
• 8:20
  Speaker 1: seems to track better reality, right.
• 8:23
  Speaker 3: Yeah, yes, And it also you know, you can still have,
• 8:26
  Speaker 3: for example, a durable power of attorney for healthcare, a
• 8:30
  Speaker 3: financial power of attorney. Those can co exist along with
• 8:34
  Speaker 3: supported decision making and often do, but again it still
• 8:38
  Speaker 3: centers the individual in the decision making.
• 8:42
  Speaker 1: You've gone past supported decision making, right. You make an
• 8:45
  Speaker 1: argument in the I think two recent papers one in
• 8:49
  Speaker 1: a job one in health progress around supported engagement so
• 8:53
  Speaker 1: what is a great philosophy talk, So it's distinguished supported
• 8:58
  Speaker 1: decision making from supported engagement, partially about supported engagement and
• 9:02
  Speaker 1: why it's needed, especially in the context of diversity and
• 9:06
  Speaker 1: neurodiverse adults.
• 9:07
  Speaker 2: So the way we look at this is that it's
• 9:10
  Speaker 2: really two parts of this equation. That supported decision making
• 9:13
  Speaker 2: facilitates autonomous decision making, respecting individuals as autonomous decision makers,
• 9:21
  Speaker 2: but that's just part of it. That in addition to that,
• 9:25
  Speaker 2: we all live in relation to others, and so it's
• 9:27
  Speaker 2: not just about autonomy. It's also about having the resources
• 9:32
  Speaker 2: to help support people to have flourishing lives. And so
• 9:36
  Speaker 2: that's where we came up with this concept of supported engagement,
• 9:40
  Speaker 2: and we really wanted to really just argue for the
• 9:43
  Speaker 2: fact that people that are neurodiversent, people that are autistic,
• 9:46
  Speaker 2: and really anyone with a disability needs to have the
• 9:51
  Speaker 2: opportunity to make their own decisions as much as possible,
• 9:54
  Speaker 2: and we want to help facilitate that through supported decision
• 9:57
  Speaker 2: making laws. And we think that's really a very positive
• 10:00
  Speaker 2: move and trend and we support that wholeheartedly. But that's
• 10:04
  Speaker 2: not insufficient. It's necessary, but insufficient, and so support engagement
• 10:08
  Speaker 2: suggests that we as a society have to arrange things
• 10:12
  Speaker 2: in a way that helps facilitate flourishing of lives. You know,
• 10:17
  Speaker 2: so that is a very kind of old concept. To
• 10:18
  Speaker 2: your point, Brian, about you know philosophy is that you know,
• 10:21
  Speaker 2: that's the ultimate goal of human beings. We want to
• 10:23
  Speaker 2: live flourishing, meaningful lives, and in order to do that,
• 10:28
  Speaker 2: we really need more support through a variety of different resources,
• 10:32
  Speaker 2: whether there're state agencies or nonprofits, a variety of different entities.
• 10:37
  Speaker 2: And it's really more about social justice. I mean, at
• 10:40
  Speaker 2: the heart of it is, you know, we want a
• 10:42
  Speaker 2: framework that will support people. And the reality is is
• 10:47
  Speaker 2: that we've talked about this in other pieces and other works,
• 10:50
  Speaker 2: is that you know, children benefit from a framework where
• 10:54
  Speaker 2: they have certain rights. They're entitled to a lot of
• 10:57
  Speaker 2: different resources because of their stat as miners. But once
• 11:01
  Speaker 2: you make that transition into adulthood, everything changes. So you're
• 11:05
  Speaker 2: no longer entitled to these benefits and these services. You're
• 11:08
  Speaker 2: merely eligible. And so it's hard enough when you're neurotypical
• 11:13
  Speaker 2: to access these resources and access these but when you're
• 11:17
  Speaker 2: in neudive versent, you're artistic, you really need even more support.
• 11:21
  Speaker 2: And so that's kind of I mean, we're kind of
• 11:23
  Speaker 2: in the nascent stages of our thinking about this, and
• 11:26
  Speaker 2: so that's why we're kind of writing these initial pieces
• 11:29
  Speaker 2: to kind of get this conversation started. But that's where
• 11:32
  Speaker 2: we're kind of headed towards.
• 11:34
  Speaker 3: And I would say, you know, if I was going
• 11:36
  Speaker 3: to simplify what it is, it actually operationalizes supported decision making,
• 11:41
  Speaker 3: so we can make decisions about our own day.
• 11:43
  Speaker 2: To day life.
• 11:43
  Speaker 3: But if the structures around us, both locally nationally don't
• 11:49
  Speaker 3: allow for us to operationalize those individual choices, then there's
• 11:55
  Speaker 3: a problem. So we're looking at sort of supported decision
• 11:58
  Speaker 3: making would be the micro level, and there's the mezzo
• 12:01
  Speaker 3: and the macro level. We need to be engaged in
• 12:03
  Speaker 3: policy making. There is no reason that many neurodivergent individuals
• 12:08
  Speaker 3: cannot engage in policy making, can't speak up for what
• 12:12
  Speaker 3: do I need to be able to make the decision
• 12:14
  Speaker 3: about where I live or how I live, or what
• 12:17
  Speaker 3: transportation is available to me. If it's not available to
• 12:21
  Speaker 3: you because of where you live, that's a systemic issue,
• 12:24
  Speaker 3: that is a social issue. So really we're looking to
• 12:28
  Speaker 3: take those individual choices that we support and think about
• 12:31
  Speaker 3: in bioethics, but make them much more appropriate and globalized
• 12:37
  Speaker 3: and really operationalize the choice.
• 12:40
  Speaker 1: What brought you to think about neurodiversity neurodiverse adults? What
• 12:44
  Speaker 1: brought you to sort of write on this topic? Can
• 12:46
  Speaker 1: you mentioned this is sort of in the sort of
• 12:48
  Speaker 1: nascent thought on this What led you to think about it?
• 12:51
  Speaker 2: So, we've been thinking about the issues really to transition
• 12:54
  Speaker 2: for many years. We've been writing about this for well
• 12:56
  Speaker 2: over a decade. I mean, it's certainly from our own
• 13:01
  Speaker 2: respective personal experiences as being the parents of neurodiversion children.
• 13:06
  Speaker 2: So I have an autistic adult child who's now in
• 13:09
  Speaker 2: his early twenties, diagnosed when he was three and has
• 13:14
  Speaker 2: been you know, has been in was for many many
• 13:16
  Speaker 2: years at a therapeutic institution for artistic young people to
• 13:22
  Speaker 2: help equip him with a variety of different kinds of
• 13:25
  Speaker 2: skills and abilities and things and that sort. But I
• 13:28
  Speaker 2: would say, you know, that kind of personal experience got
• 13:31
  Speaker 2: me more engaged with this topic, not just as a parent,
• 13:36
  Speaker 2: but as an academic ethicist. And I really saw then
• 13:40
  Speaker 2: that night, both of us we share this that there
• 13:42
  Speaker 2: really was a huge gap in the literature about this
• 13:45
  Speaker 2: topic in bioethics, that there really wasn't much about nerdiversity,
• 13:50
  Speaker 2: nerdiversion adults or autistic adults artistic children, and so we
• 13:54
  Speaker 2: really wanted to focus our efforts initially on this transition
• 13:57
  Speaker 2: process and what are some of the relevant ethical, legal,
• 14:01
  Speaker 2: social issues, So that personal experience really shaped I think,
• 14:07
  Speaker 2: at least initially a lot of our thinking. Having said
• 14:10
  Speaker 2: all that, I do want to caution about the fact
• 14:13
  Speaker 2: that this movement has been very much led by nerdiversion
• 14:17
  Speaker 2: autistic people themselves. And so we're here as scholars, as academics.
• 14:21
  Speaker 2: We're currently co teaching, of course in discibilit ethics with
• 14:25
  Speaker 2: a loyal faculty member who's also neurodivergent. And so we
• 14:28
  Speaker 2: feel like when we talk about these things, when we
• 14:30
  Speaker 2: write about things things that we want to be as
• 14:32
  Speaker 2: inclusive as possible, and you know, really try to exemplify
• 14:35
  Speaker 2: that slogan, nothing about us without us, and so but
• 14:38
  Speaker 2: that's really I would say that was the initially for me,
• 14:41
  Speaker 2: the reason why I was interested in this topic.
• 14:45
  Speaker 3: So for me, I got involved probably about eighteen years
• 14:49
  Speaker 3: ago when I put together a national conference on autism.
• 14:54
  Speaker 3: And I did that because I was looking at health
• 14:56
  Speaker 3: law and policy issues at the time. Kahan and I
• 14:59
  Speaker 3: had just of reconnected, and his personal experience was really
• 15:05
  Speaker 3: valuable and integral to this. And as he mentioned, he
• 15:09
  Speaker 3: had this personal experience became part of my life and
• 15:12
  Speaker 3: my family's life as well. And then our kids are
• 15:18
  Speaker 3: two weeks apart exactly. So in the midst of the pandemic,
• 15:22
  Speaker 3: when my daughter was just nineteen, she was diagnosed as neurodivergent,
• 15:28
  Speaker 3: a little bit different experience for me. So, you know,
• 15:32
  Speaker 3: my daughter's got an Ivy League education, she works a
• 15:35
  Speaker 3: full time job. One would say, oh, what's the problem.
• 15:37
  Speaker 3: But we started to see that eligibility thing that Kahan
• 15:42
  Speaker 3: mentions and that we were already writing about, becomes an
• 15:45
  Speaker 3: even bigger issue for some where you're not even eligible
• 15:49
  Speaker 3: because you hit these certain markers of what we expect
• 15:55
  Speaker 3: from an adult. So even though you might need the support,
• 15:58
  Speaker 3: it's not there. You are not even eligible for it.
• 16:02
  Speaker 2: And so.
• 16:04
  Speaker 3: It really came down to so many things for both
• 16:07
  Speaker 3: of us, recognizing that neurodiversity is sort of a constellation
• 16:11
  Speaker 3: of things and it can look different. You know, there's
• 16:14
  Speaker 3: a saying that you've seen one person with autism you've
• 16:16
  Speaker 3: seen one person with autism, and that's very much been
• 16:19
  Speaker 3: our personal experience and is calmuch we don't want or
• 16:24
  Speaker 3: even hold ourselves out is speaking for everyone, or we
• 16:27
  Speaker 3: don't want to be the voice for this, but we
• 16:30
  Speaker 3: want to facilitate what might be needed for those voices
• 16:34
  Speaker 3: to be heard.
• 16:35
  Speaker 1: We have a lot of different folks who sort of
• 16:37
  Speaker 1: across the globe who listen to this podcast, but we
• 16:40
  Speaker 1: always sort of have There's a special place in our
• 16:42
  Speaker 1: hearts for medical students because medical students at the school
• 16:46
  Speaker 1: I teach at Hackensach Marinian School Medicine often listen to
• 16:48
  Speaker 1: this and I think sort of separately and I'll push
• 16:51
  Speaker 1: on what medical students should do in a few minutes.
• 16:53
  Speaker 1: But it's really helpful because all these students want to
• 16:55
  Speaker 1: write research papers, they all want to publish, and often
• 16:59
  Speaker 1: I give them the advice is there something that really
• 17:01
  Speaker 1: matters to you? Is there a personal experience or something
• 17:04
  Speaker 1: which might push you to a particular topic. And I
• 17:06
  Speaker 1: think this is sort of a tor toive force of
• 17:08
  Speaker 1: personal life experiences which helped shape an interest in this,
• 17:11
  Speaker 1: and I, yeah, I appreciate that very much. It also
• 17:14
  Speaker 1: strikes me as to come up a few of the
• 17:16
  Speaker 1: different answers sort of highlighting arbitrary cutoffs, whether it's relative
• 17:20
  Speaker 1: to ineligibility or something else. And we had just talked
• 17:23
  Speaker 1: the other day in class about moral arbitrariness, and so
• 17:27
  Speaker 1: some folks think you have to draw a line somewhere,
• 17:29
  Speaker 1: But just because a line might be drawn for you
• 17:32
  Speaker 1: or someone else you know, doesn't mean that that line
• 17:34
  Speaker 1: properly applies to everybody. And so I think that's a really,
• 17:37
  Speaker 1: really helpful point. You mentioned structures previously, which I think
• 17:40
  Speaker 1: connects up well to the moral arbitrary in this point.
• 17:43
  Speaker 1: So I want to push on social and political structures.
• 17:45
  Speaker 1: And I can't ask this question without asking what's sort
• 17:48
  Speaker 1: of going on at the highest levels the government in
• 17:51
  Speaker 1: the US, given that there's been a big transition in
• 17:53
  Speaker 1: many changes. So we've seen these changes, some changes. Things
• 17:56
  Speaker 1: seem to be going back and forth. We've heard interested
• 17:59
  Speaker 1: part parties in the US and elsewhere have heard of
• 18:01
  Speaker 1: intended changes relative to hosts of programs, education, clinical trials,
• 18:07
  Speaker 1: terms that can be used in research and not terms
• 18:10
  Speaker 1: like diversity, equity, and inclusion, which can't be used. Google
• 18:14
  Speaker 1: maps apparently has changed. Someone just told me. So there's
• 18:17
  Speaker 1: been a lot in light of the transition. Do you
• 18:21
  Speaker 1: anticipate impacts on neuro divergent persons in terms of social
• 18:25
  Speaker 1: structures or anything. So the political world has changed, how
• 18:28
  Speaker 1: is this going to affect neurodivergent folks from your perspectives?
• 18:32
  Speaker 3: I think in many ways this has been an issue
• 18:35
  Speaker 3: for a while since the beginning really of DEI, the
• 18:38
  Speaker 3: term we can't use anymore, but was often focused on
• 18:42
  Speaker 3: race and ignored the idea that disability for a very
• 18:46
  Speaker 3: long time and always has been part and parcel of this.
• 18:49
  Speaker 3: So again that's a huge step back. These changes that
• 18:53
  Speaker 3: might erupt at the Department of Education will do away
• 18:56
  Speaker 3: with individualized education plans. So even that entitlement that we
• 19:02
  Speaker 3: have written about could disappear, That entitlements might be gone,
• 19:06
  Speaker 3: cuts to Medicaid funding, all of that could impact things
• 19:09
  Speaker 3: like housing, other supportive services that are available, income supports
• 19:15
  Speaker 3: for individuals who may not be able to work a
• 19:17
  Speaker 3: full time job, for example, even things like transportation. We
• 19:21
  Speaker 3: don't think about how these structures we have in place
• 19:24
  Speaker 3: through what loosely we call DEI having ramps for example,
• 19:29
  Speaker 3: what's the next step the Americans with Disabilities Act, Because
• 19:32
  Speaker 3: that seems ripe for the picking. That then makes the
• 19:36
  Speaker 3: world even more inaccessible that the structural world. That is
• 19:40
  Speaker 3: so I really then we've got this whole issue with
• 19:44
  Speaker 3: who might be coming to HHS and how that will
• 19:49
  Speaker 3: impact things like, for example, vaccination and the misinformation and
• 19:54
  Speaker 3: disinformation that has been flowing widely about links between autom
• 20:00
  Speaker 3: and vaccines, widely disproven, yet erupting again at the highest
• 20:05
  Speaker 3: levels of our governing systems. So that sort of information
• 20:11
  Speaker 3: being spouted about puts everybody at risk, but particularly those
• 20:15
  Speaker 3: who might and again it sort of disregards and says
• 20:19
  Speaker 3: that these individuals, it's not a bad message, these individuals
• 20:23
  Speaker 3: don't belong they're harmful people, they're not good or this
• 20:26
  Speaker 3: even Elon Musk and announcing, you know, years ago he's
• 20:32
  Speaker 3: autistic and using that framework as a way to suggest
• 20:36
  Speaker 3: that this is maybe not a good thing or is
• 20:39
  Speaker 3: an excuse for certain behaviors. All of that. So it's
• 20:43
  Speaker 3: a terrible precedent for really just having a sense of
• 20:48
  Speaker 3: belonging and recognition that everybody has a space and a place.
• 20:53
  Speaker 2: I was going ahead also that yes, I think that
• 20:54
  Speaker 2: the creermonstration not only doesn't support DII and it's high
• 21:00
  Speaker 2: to it by this hostile I think the disability rights
• 21:03
  Speaker 2: and I think that is something that needs to be
• 21:05
  Speaker 2: faced with, I think with seriousness. And you know, something
• 21:09
  Speaker 2: we haven't really talked about is just how visible and
• 21:12
  Speaker 2: evident eugenics language has been coming out of you know,
• 21:16
  Speaker 2: the current president, I mean. And so this is something
• 21:18
  Speaker 2: that Art Capitain has written about, that eugenesis policies or
• 21:23
  Speaker 2: something that people are talking about and you know, trying
• 21:26
  Speaker 2: advancing these very reductionistic views about genes and good genes
• 21:30
  Speaker 2: and bad genes and and so this all, all of
• 21:34
  Speaker 2: this has an effect on people's thinking. When leadership at
• 21:38
  Speaker 2: the highest level are espousing eugenesis views, ablest views that
• 21:43
  Speaker 2: this does thene becomes normalized, and I think that can
• 21:47
  Speaker 2: have a really really terrible impact on the well being
• 21:51
  Speaker 2: of disabled people, certainly artistic narrative vergent individuals. And I
• 21:55
  Speaker 2: did want all sort just emphasis when the nets said
• 21:57
  Speaker 2: that the newlyleadership of age of just having someone who
• 22:02
  Speaker 2: is an about anti vax propagandist is something that's really
• 22:06
  Speaker 2: very deleterious to these communities because it again perpetuates this myth,
• 22:12
  Speaker 2: this lie, but also it somehow frames autism as something
• 22:18
  Speaker 2: absolutely awful. That the worst thing that you can have
• 22:21
  Speaker 2: is that if you get these vaccines as a child
• 22:23
  Speaker 2: and you've become autistic, that's somehow an incredibly awful fate.
• 22:27
  Speaker 2: And that's a that's a really again, very very pernicious
• 22:31
  Speaker 2: stigma that gets perpetuated.
• 22:34
  Speaker 3: Yeah, and it ignores the fact that the diseases and
• 22:38
  Speaker 3: that are caused by these these you know that the
• 22:42
  Speaker 3: vaccines are preventing against that those diseases are better somehow,
• 22:46
  Speaker 3: those deadly diseases are better somehow than being autistic. We've
• 22:50
  Speaker 3: been able to prevent it. And this is something I
• 22:52
  Speaker 3: often say, not just me, but many say about public
• 22:55
  Speaker 3: health as a public health professional trained in public health.
• 22:59
  Speaker 3: We're doing our job when you don't see it. And
• 23:03
  Speaker 3: so this prevention has been great. It was vaccines were
• 23:07
  Speaker 3: considered one of the greatest public health accomplishments of the
• 23:10
  Speaker 3: twentieth century. And here we are in the next century
• 23:14
  Speaker 3: looking at it as something that's been very harmful. But
• 23:17
  Speaker 3: I think and knowing polio survivors, you know, or maybe
• 23:22
  Speaker 3: those who didn't, knowing people who've been lost to polio
• 23:25
  Speaker 3: or smallpox or any of these other vaccine preventable illnesses
• 23:30
  Speaker 3: autism is somehow being neurodiverse somehow is worse. That is
• 23:34
  Speaker 3: a really terrible message where our officials at the highest
• 23:38
  Speaker 3: level to be espousing and we ignore the very real
• 23:43
  Speaker 3: risks of something like measles or mumps that can lead
• 23:47
  Speaker 3: to infertility or blindness definite as a whole host a
• 23:51
  Speaker 3: very serious, serious and ongoing health consequences.
• 23:55
  Speaker 1: I don't even know where to start. It's a series
• 23:57
  Speaker 1: of great points to the sort of the set of
• 24:00
  Speaker 1: horrific diseases which vaccines can prevent is just I mean,
• 24:05
  Speaker 1: it's insidious.
• 24:06
  Speaker 3: It's also concerning that this potential leadership also espouses a
• 24:12
  Speaker 3: lot of sort of non tried and trude remedies for things,
• 24:16
  Speaker 3: which has been one of the fights that's been long
• 24:20
  Speaker 3: hard fought in the autism world, is sort of debunking
• 24:23
  Speaker 3: some of these myths about alternative treatments. And that's not
• 24:28
  Speaker 3: to say that complementary medicine can't be hugely beneficial, but
• 24:34
  Speaker 3: it does often and has as we've seen, increasingly ignore science.
• 24:39
  Speaker 3: So that's something else we need to be mindful of
• 24:42
  Speaker 3: and cautious of, just so as not to cause unnecessary harm.
• 24:48
  Speaker 1: It's a powerful point and I am too naive, I think.
• 24:51
  Speaker 1: I mean, I just for folks to be put into
• 24:54
  Speaker 1: positions of power who lack all expertise is continually baffling
• 24:58
  Speaker 1: to me, and it shouldn't. And we've done work. You've
• 25:01
  Speaker 1: done a bunch of work on sort of how people
• 25:03
  Speaker 1: understand science and scientific progress and these kinds of things.
• 25:07
  Speaker 1: But I colleague, walk in the other day and say, well,
• 25:09
  Speaker 1: the germ theory of disease might be out. And I
• 25:12
  Speaker 1: remember the first day in my medical ethics class, right
• 25:16
  Speaker 1: for the GigE philosophers, why is this and why should
• 25:19
  Speaker 1: we think about medicine? What when you know, sort of
• 25:21
  Speaker 1: big medical ethics questions, And my great mentor David Solomon said, look,
• 25:26
  Speaker 1: before you guys know the history better nineteen oh four,
• 25:28
  Speaker 1: nineteen oh five, before we really thought through the germ
• 25:31
  Speaker 1: theory of disease, the average patient who saw the average
• 25:34
  Speaker 1: colinition for an average issue might be harmed more than helped.
• 25:39
  Speaker 1: I mean, docs didn't go around and wash their hands.
• 25:41
  Speaker 1: I told my kid this story the other day, and
• 25:43
  Speaker 1: now right, but we're anyway, I just I almost don't
• 25:47
  Speaker 1: even know how to wrap my head around some of
• 25:50
  Speaker 1: these things. And then you think of the specific harms too,
• 25:53
  Speaker 1: neurodivergent folks, to other disabled persons, to folks who might
• 25:59
  Speaker 1: just find themselves in the thoughts of the administration to
• 26:02
  Speaker 1: be different from the members of the administration.
• 26:05
  Speaker 3: And then I think we just have to look at
• 26:07
  Speaker 3: the whole picture. This war on LGBTQ, on women, All
• 26:13
  Speaker 3: of this interrelates because there is such intersectionality and the
• 26:16
  Speaker 3: things that we're talking about. So while our focus is
• 26:20
  Speaker 3: on neurodivergence neurodiversity, I think that all that you're asking
• 26:27
  Speaker 3: us about what's going on, all of these things are
• 26:30
  Speaker 3: very interconnected and it's hard to tease out just one
• 26:34
  Speaker 3: because of the intersectionality.
• 26:36
  Speaker 1: Yeah, I mean, I think this is a great point,
• 26:37
  Speaker 1: and it helpfully leads to sort of concretely what we
• 26:40
  Speaker 1: can do the sort of positive outlook looking question as
• 26:44
  Speaker 1: leading bioethicis in the US maybe across the globe. You
• 26:46
  Speaker 1: guys are big deals. What should bioethicists do in response
• 26:51
  Speaker 1: to this? Or what would you hope for your bioethical
• 26:53
  Speaker 1: colleagues to do? And you know, you can focus on
• 26:58
  Speaker 1: neurodivergent adults, but given them about intersectionality, like what should
• 27:02
  Speaker 1: bioethicis be doing well.
• 27:03
  Speaker 2: I think that as I mentioned, you know, there really
• 27:07
  Speaker 2: wasn't much of a literature several years ago, ten or
• 27:09
  Speaker 2: so years ago. Now there's a growing literature. I think
• 27:12
  Speaker 2: there's more interest. So just to give you an example,
• 27:14
  Speaker 2: Brian Nana and I and a PhD student at Emory,
• 27:19
  Speaker 2: Samantha Chippen is a former student at Loyola, and then
• 27:22
  Speaker 2: one of our colleagues, Ken Richmond, who's at the Massachusett
• 27:25
  Speaker 2: College of Pharmacy. We're all put together a panel on
• 27:30
  Speaker 2: this topic of neurodiversity and transition and the things that
• 27:34
  Speaker 2: we've been talking about, and there was a really really
• 27:37
  Speaker 2: great turnout, and you know, so as academic atheicist, you know,
• 27:41
  Speaker 2: that's one measure of interest in the sense that you know, okay,
• 27:44
  Speaker 2: are people interested in this type of when you go
• 27:46
  Speaker 2: and give a talk or do people show up? Are
• 27:48
  Speaker 2: they asking questions? And that that was actually very gratifying
• 27:51
  Speaker 2: to see a number of people there who are interested
• 27:54
  Speaker 2: in this topic who think is important. We had a
• 27:56
  Speaker 2: number of people stay and ask questions. So I think
• 28:01
  Speaker 2: having these conversations are important at the academic level. But
• 28:05
  Speaker 2: I think, you know, we need to do more public
• 28:06
  Speaker 2: facing bioethics work and then at and I that's something
• 28:10
  Speaker 2: that we try to do through writing blogs or giving
• 28:14
  Speaker 2: talks in non academic settings. But I think this is
• 28:17
  Speaker 2: something that we and also you know, working with folks
• 28:21
  Speaker 2: from the community, such as you know, I mentioned Devin Price,
• 28:24
  Speaker 2: who's a faculty member here at Loylan, has done tremendous
• 28:27
  Speaker 2: work in this area. So I think there's things that
• 28:29
  Speaker 2: ethicists can do. We're just kind of getting the ball
• 28:31
  Speaker 2: rolling right now. Yeah.
• 28:33
  Speaker 3: I mean, we've gone so far as to have talks
• 28:35
  Speaker 3: about neurodiversity to a high school class, a high school
• 28:38
  Speaker 3: ap psyche class, for example. I think, you know, we
• 28:42
  Speaker 3: cannot ignore the role that young people play. We often
• 28:45
  Speaker 3: talk amongst ourselves, but I think getting out there getting
• 28:49
  Speaker 3: people interested in the work that we do are Kaplan
• 28:52
  Speaker 3: and his folks at NYU have a high school bioethics
• 28:54
  Speaker 3: program that I think is really a great model. And
• 28:57
  Speaker 3: taking some of these issues there to those who are
• 29:02
  Speaker 3: maybe more open to listening, maybe a little less jaded
• 29:05
  Speaker 3: by what's going on in the world around us, is
• 29:08
  Speaker 3: a way to get started. Sometimes I think it's easier
• 29:13
  Speaker 3: to educate from the get go than to re educate
• 29:16
  Speaker 3: people who are entrenched in their views. So I think
• 29:19
  Speaker 3: it's ethicists, you know, we talk about the things. As
• 29:23
  Speaker 3: you said, Brian, I think what you tell your students
• 29:25
  Speaker 3: is so important. Right about what you're passionate about. Get
• 29:28
  Speaker 3: out there and talk to people. Talk to first your peers.
• 29:31
  Speaker 3: I think engaging in any way where you can maybe
• 29:35
  Speaker 3: capture a few people who are beyond your like minded
• 29:38
  Speaker 3: thinkers is also a really important way for us to
• 29:42
  Speaker 3: get the word out.
• 29:44
  Speaker 1: That sounds exactly right, and it's just a generally helpful
• 29:47
  Speaker 1: approach in life. I mean epistemologically right, I mean, there's
• 29:50
  Speaker 1: been a bunch of work in bioethics recently on epistemic humility.
• 29:54
  Speaker 1: But bump into other folks, talk with different people outside
• 29:58
  Speaker 1: your echo chamber, and you need to do that in
• 30:01
  Speaker 1: order to be a well informed and thoughtful person. Right,
• 30:04
  Speaker 1: And he goes back to a bunch of points you made, Nontta,
• 30:07
  Speaker 1: how folks would understand how to navigate the structures to
• 30:10
  Speaker 1: Khan's point on flourishing, I mean, there's just there's a
• 30:14
  Speaker 1: lot there. So with that, I'll give you one more question.
• 30:17
  Speaker 1: Any recommendations for students in particular medical students, but students
• 30:20
  Speaker 1: in general beyond what you just said, who are really
• 30:23
  Speaker 1: interested in bioethics. So for the medicines, they're gonna be docs.
• 30:26
  Speaker 1: I know you guys teach medical students and occasionally you
• 30:29
  Speaker 1: get some who are really interested in bioethics. Any thoughts, recommendations, suggestions,
• 30:34
  Speaker 1: given all your teaching and work.
• 30:37
  Speaker 2: Well, we have actually a formal MDM a program in
• 30:39
  Speaker 2: bio ethics for students which has been a long standing
• 30:42
  Speaker 2: program here and it's a small cohort every year, you know,
• 30:46
  Speaker 2: anywhere from one to maybe three or four students. That's
• 30:50
  Speaker 2: an excellent way for students to cultivate not just their interests,
• 30:54
  Speaker 2: but their expertise in bioethics. As the way I frame
• 30:57
  Speaker 2: it is that if you want to be a physician,
• 30:58
  Speaker 2: ethicist is an excellent way to do it. Is in
• 31:00
  Speaker 2: that way you have access to nationally recognize experts in
• 31:04
  Speaker 2: a variety of areas within biotics. Among our faculty. You know,
• 31:06
  Speaker 2: we have an honors program in biothics that's led by
• 31:09
  Speaker 2: one of my colleagues here, another really great way for
• 31:12
  Speaker 2: our students to learn more about biothics. Perhaps not as
• 31:14
  Speaker 2: intense as a formal degree program, but still an excellent
• 31:18
  Speaker 2: way to cultivate some more knowledge and skills in bioethics.
• 31:22
  Speaker 2: And so yeah, I think, you know, with our students
• 31:25
  Speaker 2: in general, there's definitely a hunger for more of this content.
• 31:29
  Speaker 2: Part of the challenge, and I've seen this, you know,
• 31:31
  Speaker 2: over many years as an educator here at the Strict
• 31:34
  Speaker 2: School of Medicine is that, you know, the criclum is packed,
• 31:37
  Speaker 2: and it's always a there's always a you know, kind
• 31:41
  Speaker 2: of this battle of trying to fit in bioethics into
• 31:45
  Speaker 2: the criculum and when to introduce it to students, when
• 31:47
  Speaker 2: can it be reinforced? And I think this is an
• 31:50
  Speaker 2: issue that a lot of medical schools have to face,
• 31:53
  Speaker 2: you know, even though it's an l SM requirement to
• 31:55
  Speaker 2: have ethics in the curriculum, how to do it how
• 31:57
  Speaker 2: much when I think that's always a challenge, and so
• 32:01
  Speaker 2: so I think, you know, but I think there is
• 32:03
  Speaker 2: definitely an interest.
• 32:05
  Speaker 3: I think there's other I think there you know, you
• 32:07
  Speaker 3: can have clubs and start clubs. I see students charting
• 32:10
  Speaker 3: clubs all the time with different special interests. I think
• 32:13
  Speaker 3: this is a great place for interprofessional education. So we
• 32:17
  Speaker 3: see so many professions that cover ethics at some degree
• 32:21
  Speaker 3: or required for their accreditation to have something related to it, dentistry,
• 32:25
  Speaker 3: social work, combining those so that again, because you've got
• 32:29
  Speaker 3: that packed curriculum, you can share some of that load.
• 32:32
  Speaker 3: So I think a lot of things I'm noticing now
• 32:35
  Speaker 3: are student led and student directed saying hey, we want this,
• 32:38
  Speaker 3: we need this, So that's important. Getting involved in organizations
• 32:44
  Speaker 3: that do bioethics work, finding a way to sit on
• 32:48
  Speaker 3: on either your your institution's ethics committee, or even I
• 32:53
  Speaker 3: serve on several ethics committees where we welcome students to
• 32:57
  Speaker 3: our ethics committees. So I think they're lots of different
• 33:00
  Speaker 3: ways to do this, some formal, some less formal. But
• 33:04
  Speaker 3: if the interest is there, not that I want to
• 33:07
  Speaker 3: increase your workload, Brian, but your students can come to
• 33:10
  Speaker 3: you and say, hey, how do I get more involved
• 33:12
  Speaker 3: in doing this? Or you know, I get emails sometimes
• 33:16
  Speaker 3: from people I've never met before but they've read something
• 33:19
  Speaker 3: how do I do this? And I'm more than happy
• 33:22
  Speaker 3: to talk to students and say this is this is
• 33:24
  Speaker 3: what you think about, this is this is how you
• 33:26
  Speaker 3: might be able to do it in your community.
• 33:29
  Speaker 2: And adjacent to this interest in bioethics, Brian. Something that
• 33:33
  Speaker 2: and I have been involved in now for the last
• 33:34
  Speaker 2: few years is this Disability Health Elective here at the
• 33:37
  Speaker 2: Streis School Medicine, which was really led and created by
• 33:41
  Speaker 2: our medical students. Former medical students are now in residency,
• 33:44
  Speaker 2: and I think that's another area where they can cultivate
• 33:47
  Speaker 2: their interest in disability health disability ethics. I mean, we've
• 33:51
  Speaker 2: both been really just incredibly impressed with their level of
• 33:55
  Speaker 2: commitment and creativity to these to this area of disability
• 34:00
  Speaker 2: health broadly and disability ethics more specifically. But I think
• 34:04
  Speaker 2: this hopefully signals a trend towards more interest in serving
• 34:08
  Speaker 2: the needs of people who are disabled and patients are
• 34:12
  Speaker 2: theirs that are disabled. And so we just actually the
• 34:14
  Speaker 2: last night wrapped up our Disability Health Elective last night
• 34:17
  Speaker 2: actually with our medical students, and I was just really
• 34:19
  Speaker 2: kind of again just incredibly impressed and gratified with their
• 34:23
  Speaker 2: level of energy and interest and passion for this.
• 34:27
  Speaker 3: Yeah, and I think I've even had students who have
• 34:30
  Speaker 3: participated in something akin to like an advanced directive clinic
• 34:34
  Speaker 3: where patients who come in, they sit down with them
• 34:37
  Speaker 3: and they help them figure out how to fill out
• 34:38
  Speaker 3: advanced directives. Maybe who work with Some might even work
• 34:43
  Speaker 3: with a team, for example of physicians who provide medical
• 34:47
  Speaker 3: care to the homeless and will go out and work
• 34:50
  Speaker 3: on helping them with advanced directives to avoid things like
• 34:53
  Speaker 3: having unrepresented patients. So it depends where the interest is
• 34:56
  Speaker 3: and what the interest is. But I have found that
• 35:00
  Speaker 3: med students are incredibly resourceful and it's it's always just
• 35:05
  Speaker 3: such a joy to work with them and hear what
• 35:09
  Speaker 3: they're thinking about. And I think for us it's sometimes
• 35:12
  Speaker 3: it most certainly motivated us to create this disability ethics course,
• 35:17
  Speaker 3: which has been just an amazing experience so far, and
• 35:20
  Speaker 3: we're not even at the midterm yet.
• 35:22
  Speaker 1: I think this is a helpfully hopeful note to end
• 35:25
  Speaker 1: on because it sounds like the loyalest students, similar to
• 35:28
  Speaker 1: the Hackenstack students I teach. I mean, it's I think
• 35:32
  Speaker 1: hope for the future. Some of the most interesting, i
• 35:34
  Speaker 1: think powerful ethics sessions that we've had have come from
• 35:37
  Speaker 1: student demand, and so I think, yeah, this is.
• 35:41
  Speaker 3: Yeah, really, yeah, we just need to keep listening to
• 35:44
  Speaker 3: them and give them a much bigger voice. And what
• 35:46
  Speaker 3: we do not assume that we know everything, but let
• 35:50
  Speaker 3: them direct us somewhat Yeah.
• 35:51
  Speaker 1: I agree wholeheartedly. Nnette Keeon, thank you so much for
• 35:54
  Speaker 1: joining me today talking about your recent work on neurodiversity,
• 35:58
  Speaker 1: neurodiverse adult and a host of current bioethical topics. I'm
• 36:03
  Speaker 1: Brian Pilkington and thanks everyone for listening. This podcast series
• 36:07
  Speaker 1: is a production of the Health Ethics Lab, and I
• 36:10
  Speaker 1: am grateful to colleagues in the Department of Medical Sciences,
• 36:13
  Speaker 1: the IHS Library, and the Hackensack Bridy in the School
• 36:15
  Speaker 1: of Medicine for making this collaboration possible. To learn more
• 36:19
  Speaker 1: about our work or to engage with the series content,
• 36:22
  Speaker 1: reach out to me Brian Pilkington at Brian dot Pilkington
• 36:26
  Speaker 1: at hmh N dot org.