Medicine’s Disability Blind Spot: Vaccine Roll-out, Privilege, and Access

Podcast with Alice Wong and Alyssa Burgart

Join EIC Brandy Schillace in conversation with Alice Wong, a disabled activist based in San Francisco and the founder of the Disability Visibility Project, and Alyssa Burgart, an anesthesiologist and ethicist at Stanford University. Disabled lives have long been overlooked, as the very systems and designs of medicine cater to the able-bodied. No where has this been more apparent than in the present pandemic crisis and the vaccine roll-out, which has—inadvertently or otherwise—privileged abled (and frequently White, middle/upper class) people. In today’s podcast Alice and Alyssa way in on this systemic problem, and ways to change the future.

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(Transcript Below Bionotes)

 

 

Alyssa BurgartDr. Burgart (she/her, they/them) specializes in pediatric anesthesia and pediatric abdominal transplant anesthesia. She has special interest in transplantation, PANS/PANDAS, spinal muscular atrophy, and trauma. Dr. Burgart is committed to finding the most successful way for each child to interact with the anesthesia team, in order to create an overall positive experience. She champions a program specifically supporting children with unique needs, such as those with sensory integration differences.

Dr. Burgart has a joint appointment in the Stanford Center for Biomedical Ethics, serves as the Co-Chair of the LPCH Ethics Committee and as a member of the SHC Ethics Committee. She provides ethics consultation services for people of all ages. Her ethics interests include pediatric ethics, organ transplantation, communication skills, disability rights, women’s healthcare access, adolescent decision-making, ethics education, and excellence in ethics consultation.

Dr. Burgart is active on Twitter, where she comments on Anesthesiology and Bioethics issues. @BurgartBioethix

Alice WongAlice Wong (she/her) is a disabled activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project, an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. Currently, Alice is the editor of Disability Visibility: First-Person Stories from the Twenty-First Century, an anthology of essays by disabled people, available now by Vintage Books (2020). You can find her on Twitter: @SFdirewolf.

She has been published in the New York Times, Vox, PEN America, CatalystSyndicate NetworkUncanny MagazineCurbed SFEaterBitch MediaTeen VogueTransomMaking Contact Radio, and Rooted in Rights.

Her activism and work has been featured in the CNN original series United Shades of America (Season 3, Episode 4), WNYC’s Death, Sex, and Money podcast, KQED’s Truth Be Told podcastWired, The HillAutostraddleWerk It: The Podcast, WNYCThe GuardianRoll CallWBUR radioAl JazeeraTeen VogueBitch Media, RewireViceEsquireCNET, and Buzzfeed.

Recognized for her service to the community and activism at the local and national level, Alice received the Beacon Award by the San Francisco Mayor’s Disability Council in 2010 and the Disability Service Award by the University of California, San Francisco in 2011. From 2013 to 2015 Alice served as a member of the National Council on Disability, an appointment by President Barack Obama. Alice is the recipient of the 2016 AAPD Paul G. Hearne Leadership Award, an award for emerging leaders with disabilities who exemplify leadership, advocacy, and dedication to the broader cross-disability community.

 

Transcript

BRANDY SCHILLACE: Hello, and welcome back to the Medical Humanities podcast. I’m Brandy Schillace, Editor in Chief, and today it is my distinct privilege to bring two people onto our podcast, one of whom you’ve heard from before, Alice Wong, who is a disabled activist based in San Francisco and founder of the Disability Visibility Project. She’s also the editor of the anthology Disability Visibility: First-Person Stories from the 21st Century. And today, joining me, too, is Alyssa Burgart, who is an anesthesiologist and ethicist at Stanford University. And I’m so glad to have you ladies with me today.

ALICE WONG: Thanks for having me on, Brandy!

ALYSSA BURGART: Absolutely. Thanks for having us.

SCHILLACE: I’d like to start off because I really want to hear from you about the projects and the work that you’re doing, especially as it regards disability. So, I was wondering if we could just have a little bit of an introduction from each of you. And Alyssa, as you’re new with us, let’s start with you.

BURGART: Sure. I’m a pediatric anesthesiologist and ethicist. So, I’m the person, when children are having surgery, I’m the person who makes sure that they’re safe and comfortable. And my other role is I’m a clinical ethicist. So, I help clinicians and families who are struggling with really difficult healthcare decisions and really trying to help folks navigate those gray spaces.

SCHILLACE: That’s wonderful. And I think that’s a really important place to be, and especially now, of all times. Alice, why don’t you tell us a little bit about yourself for the audience members who might not have heard you before.

WONG: Oh, thank you, Brandy. So, I’m a disabled person who’s, I guess, a little bit of everything. I’m an activist. I used to be in academia. I used to work at UC San Francisco as a staff Research Associate. And I started the Disability Visibility Project in 2014, and it just kind of snowballed into an online community. And this is part of my life’s work in terms of how so many disabled perspectives on every single issue are really not centered. And I think one thing that I’m so delighted to be here with Alyssa is that bioethics has always been a really personal topic to me.

SCHILLACE: Mmhmm.

WONG: Because there’s so much ableism in bioethics, and I’ve been just really thankful and delighted to be connected with Alyssa. And I found Alyssa through Twitter, so it can’t be all trash! [laughter] So, I’m very excited for this. And Alyssa is a real ally in a very kind of real, non-performative way. So, I’m very thankful to call her one of my comrades.

SCHILLACE: And I just wanna say, just in full disclosure, which normally I don’t do a lot of this on the podcast, but I’ve met both of you through online means. Because in this world, especially those of us who have chronic illness or disability, we don’t always mix out in public the way other. You know, I’m not going to mixers [laughs] personally. So, the online community has been really valuable. I met both of you through Twitter. I am myself someone who suffers from chronic illness. I work from home a lot. I’m a gender fluid person. There’s all sorts of reasons that the online community can be valuable and a real asset. And so, I’m really pleased to have made both of your acquaintances, and I’m excited for the conversation we’re gonna have today. I hope our listeners will enjoy it as much as I know I will.

And where this conversation started, for those of us who are joining us today, is we were discussing the ways in which disabled people are disenfranchised in a number of ways, right? But one of them is in terms of getting the vaccine at all in this pandemic period. Not only have disabled people been at greater risk and also having a very difficult time with accessibility issues, but even in the vaccine rollout, many of them were left behind. And so, that’s kind of where this conversation started. So, I thought, why don’t we start there and talk a little bit about this and the problems therein.

WONG: Mmhmm. Alyssa, do you wanna go first, and then I’ll jump in?

BURGART: Absolutely. You know, one of the things that’s been obviously challenging for so many of us is that the pandemic has been like building the plane while you’re flying it, is a metaphor I’ve heard a number of times that has really resonated. And one of the things that I’ve really struggled with is noticing how, when people who have the ability to make policy decisions, organizational decisions really have centered their own experiences what can happen is that there are entire swaths of the population, such as disabled, you know, people with disabilities, disabled people who are left behind. And in the vaccine rollout conversations, it was really something where people said, well, you know, we really just need to focus on age because it’s simple. And I think what’s important as ethicists is that we try to really take into account just ‘cause something’s simple doesn’t mean it’s a good idea. And just ‘cause something’s simple doesn’t mean it’s what’s right. And just because something’s fast, even if we’re looking for speed, that may not be the only factor that’s important. And it’s valuable for us to try to really look at these things from different perspectives and make sure that we’re really valuing the diversity of humans who are here on this planet with us.

SCHILLACE: Absolutely.

WONG: Yeah, and I think this pandemic has really revealed all the systemic inequities, you know? Just thinking about race, thinking about class, but also about disability. So much of how our society values or doesn’t value disabled people has really been explicit, as last year, I was on your podcast with Dr. Joe Stramando talking about the ways that healthcare has been allocated and talking about triage protocols. And this is just another kind of very real example of how disabled people are not getting the same kind of treatment or considered worthy of receiving lifesaving treatments when they need acute care whether it’s because of COVID or not. This has already been something that does happen, and medical discrimination regarding disability has been a longstanding problem. So, that layered on top of being at higher risk for COVID, and clearly, hopefully your audience realizes that in our country, 40 percent of deaths related to COVID so far have taken place in long-term care facilities, which are primarily older and disabled people.

And, you know, this rollout has been really difficult and painful to me, personally, as a disabled person who’s saying I struggled myself getting access to a vaccine. And here I am thinking about, oh, I’m living in a very progressive state that should know better, that should do better, but they didn’t. And this is a problem across all states, just thinking about very broad access issues, you know, prioritization. A lot of states are, you know, did not prioritize disabled people or put them on the second or third tier. And many states now, as Alyssa mentioned, have already opened it up to all ages to speed things up. Also, a lot of websites to make the appointments are not accessible for people who use screen reader software, where it requires needing Wi-Fi or broadband services. The fact that you need an appointment is also a barrier in itself.

SCHILLACE: Right.

WONG: I’ve also heard from other disabled folks, clearly, mass vaccination sites where they’re drive-by, that’s a huge barrier because they’re not in places where public transit’s available.

SCHILLACE: Mmhmm.

WONG: And also, the fact that there are, I think, a significant number of especially high-risk people who cannot leave their homes.

SCHILLACE: That’s true.

WONG: And there are not homebound delivery services yet. I think that’s, I don’t understand why mobile vaccination hasn’t been a priority or hasn’t been something that people thought about starting last winter, when we knew the vaccines were coming. Because it shouldn’t be too radical an idea to go where people who need it most, go where they are. And here we are with still, I think, quite a big number of a bunch of very older people and people with disabilities who physically cannot leave their homes, and they should’ve been prioritized for the vaccine. And yet, now when they’re plentiful, now when they’re available to everyone, they’re still not getting vaccinated.

SCHILLACE: Mm, mmhmm.

WONG: And to me, that is a real concern.

SCHILLACE: It’s a tragedy, really, I think. Alyssa?

BURGART: Absolutely. And one of the things that’s been so striking to me in looking at the rollout across the United States is, you know, many jurisdictions—most jurisdictions, I would argue—have some sort of disability programing that is supposed to serve their communities. And it’s been very interesting to me to see how local governments and state governments sometimes have even forgotten that they actually already have some infrastructure: people who know the community, who are well connected, who understand the needs in the community better, of course, than the people at the top. And so, I think it’s so valuable to really just say, hey, what are we already doing that we can use to the advantage of the people in our community? And I don’t think that this is some revolutionary idea that we should meet people where they are.

SCHILLACE: Mmhmm. Yeah. Well, and I think last year we had a podcast where we were talking about designing for disability. And that is so rarely done even, and we were talking about products. But this is true of systems. It’s true of social programs. It’s true of all kinds of things that it so often is an afterthought, like, “Oh, yeah. And there are people who have disabilities. We’ll stick this on at the end,” as opposed to realizing that you actually have, if you sat down and made it part of the planning process—and this is true for disabled people, but it’s also true of minorities—if you sat down and you made human beings a priority and you gave everybody the dignity of the fact that they are equal lives, you know, programs would be designed very differently.

WONG: Mmhmm. But I think this is also a very telling indictment on public health in terms of they don’t value our lives. They’re looking at mortality. They look at numbers. And sometimes, the numbers don’t really tell the story. And I understand that that’s kind of their training and perspective. But I feel like, you know, there were a lot of conflicts and a lot of education that had to be done, at least in California, with those who are making the decisions about the rollout, which many of which were in the public health field.

SCHILLACE: Mmhmm.

WONG: And I think there were other community-based disabled stakeholders doing a lot of work behind the scenes, but so much of it was catchup.

SCHILLACE: Mm, mmhmm.

WONG: And I think other departments and other entities, whether it’s the other states, at the city or federal level, do see disabled advocacy or services more in the social service realm versus why don’t we consider them a resource in every aspect of healthcare? You know, and I think that happens to be the way so many things are siloed, and I think that’s also a problem, too, right? So many kind of healthcare providers and policymakers keep preaching about person-centered care! Well, this is as non-person-centered as you can get.

SCHILLACE: Mmhmm. Absolutely. I’m 100 percent in agreement with you, and I also think, you know, it’s funny because I just released a book. And one of the things that came up a lot in that book was the fact that someone out there is making decisions about which lives matter in medicine.

BURGART: Mmhmm.

SCHILLACE: And in some ways, it’s as though we as a public have lost that responsibility to someone else. And it’s hard to figure out exactly who’s making those decisions, but it’s clear that they’re being made based on how services are being rendered to the public.

WONG: Mmhmm. Yeah, and I think this is part of a, it’s not just like one person or group, but definitely, it’s a institutional culture as well, I think. Because I think so many institutions are just upholding the status quo, and they don’t want to open things up. They don’t wanna be held accountable, and they don’t wanna change. And I think if there’s anything to come out of this pandemic, it’s the fact that there are reckonings, and there are definitely far stronger calls for equity and transparency. So, I hope that this is part of the ongoing equity work that every public official, that we demand of them.

BURGART: Mmhmm, mmhmm. Absolutely.

SCHILLACE: Actually, that’s a really good point. And I actually wanna jump off what you just said there, Alice, and ask both of you, you know, what’s next? I mean, I think that there’s a lot of things that’ve gone wrong as a result of the rollout, the pandemic, the way it’s revealed a lot of inequalities and made them front and center. It’s not as though they’re new, right? They’ve been there, but they’ve certainly become much more visible. And so, how do we move on from here? What would you, Alyssa, I know you’re actually in a university hospital. You’re a Clinical Associate Professor. You know, what do we do now? What’s the way forward? And what do you hope for?

BURGART: That’s a great question. And in listening to this conversation and in my reflections on it, I just, just as we continue to have the deep stain of racism throughout our country, ableism really comes from the eugenics movement, and it is, it remains deeply embedded in the psyche of our country, in our medical education, in our nursing education.

SCHILLACE: Right.

BURGART: We really center, oftentimes, some core ideas that are deeply harmful to other human beings. And so, in my work, I really try to elevate who is the patient as a person when we’re talking about an individual person. And really ensuring that we are taking that person as a full person full of dignity and ensuring that we’re not making assumptions about who they are and what they need and what is going to be beneficial. And then when we start to move outwards in terms of are our policies reaching that aim? And then what’s happening within our governments, and how is it that we can continue to move this forward in terms of dismantling these very harmful ideas that are embedded in our culture?

SCHILLACE: Mmhmm. Yes. This comes up a lot when people talk about policing as well, especially here in the United States. I know some of my listeners are in the U.K., but I’m sure they’re highly aware of the things that’ve been happening here, too, which is sometimes you literally have to go all the way back to find the seeds of where this, these seeds were planted ages and ages ago. So, yeah. Alice, how would you comment on that?

WONG: I do wanna say probably two things. That for a lot of people who are listening and so eager to go on their summer vacations and just go buckwild, I feel this. But I have to say that as somebody who is disabled, high-risk, who’s fully vaccinated, I don’t feel safe yet.

SCHILLACE: Mmhmm.

WONG: And I think for a lot of people who are in my situation as well—and that includes a lot of chronically ill and immunocompromised people who are in every age range. So, let’s remember that—that the epidemic is not going to end anytime soon.

SCHILLACE: Mmhmm.

WONG: And the fact that we need to also continue lot of the practices that have kept us safe, such as wearing masks and such as social distancing and such as having, keeping the remote options—

SCHILLACE and BURGART: Mmhmm.

WONG: —the virtual options to work, to learn, to socialize, to participate in cultural activities. I think these are the things that I want us to continue to take forward in the future because we also need to realize not only is this pandemic not over yet by a long shot in this country, but clearly, globally—

SCHILLACE: Mmhmm.

WONG: —but also there will be—not to be a Debbie Downer—but future pandemics!

SCHILLACE: Right.

WONG: And we really need to think about all the hard lessons we’ve learned and invest in our communities and invest and build up our infrastructure. Because this has been a failure on a lot of levels, but I think that most glaringly, the largest failure is the failure of infrastructure.

SCHILLACE: Mmhmm.

WONG: And I think that, to me, is something that I hope people will take note, and for those who are in power, to really start planning for the next one.

SCHILLACE: Right. Yes, and, you know, a lot of people have said, “Oh, I just want to get back to normal,” but normal wasn’t actually very good.

WONG: Mmhmm.

SCHILLACE: Normal wasn’t good for lots and lots of people.

BURGART: Mmhmm.

SCHILLACE: And so, I agree with you. I think, I hope to see accessibility options continue for students, for workers, as you point out. But also, you know, in some ways, the pandemic has opened a window to many people, and they’ve lost an illusion of control, that people with disabilities, that people who are minorities, that people who struggle to make ends meet didn’t have that illusion to start with. And so, in a way, it’s been an interesting leveler. I hope that it means people have greater empathy and are willing to reach out to their communities to build back the trust. And local is very important; knowing that you have people to trust in your own community is very important. And I do think that that has become really crucial during these months of isolation. I hope that we’ve taken a turn there, but it’s always, [chuckles] the future really depends on what we do right now here and today. So, thank you both for being with me. Do you have any last words that you would like to leave our listeners with today?

BURGART: This is Alyssa. As much as we’ve talked about the vaccine rollout, I just wanna remind everyone that we have more rollout to go. We have kids. They make up like 25 percent of the U.S. population, and they’re gonna need to be vaccinated, too, for us to be able to figure out what’s safe and what’s not. And I share Alice’s concern about, really, safety moving forward and making sure that we’re really being inclusive of all of the people who are here in our communities and making sure that we’re really going out of our way to help everyone have a more full life.

WONG: Yeah, and I would just add that for people who are in the healthcare or public health field to really do better in terms of outreach, messaging, and education—

BURGART: Mmhmm.

WONG: —especially with those who are vaccine hesitant, because let’s not demonize or weaponize people who have very legitimate concerns and reasons for being hesitant. And again, this speaks to the history of how medical systems have harmed people, historically—

SCHILLACE and BURGART: Mmhmm.

WONG: —so many marginalized communities. So, this is really a reflection on the damage, the long-lasting damage and how, this is why so many groups have been very hesitant and distrustful of the medical system.

SCHILLACE: Absolutely, absolutely. These are wonderful points. Thank you both for being with me today. For our listeners, there will also be a blog post. And on that blog post will be some biographical information, some links to both of our speakers today, and also, as always, we provide a transcript of what we talk about here on the podcast. So, thank you once more for joining us. We’re so happy that you could be part of the conversation.

OK, I’m going to just wait a beat. And then earlier, when I first introduced us, I said, “Thank you, ladies, for coming.” And I try really hard not to do that. I myself am non-binary. So, I’m gonna repeat that and just say thank you both for coming. So, hang on just a moment. We’re gonna leave a blank space, and then I’m gonna do that for Davy.

WONG: Yeah, smash the gender binaries.

SCHILLACE: Yeah, we’re gonna try that. Hang on.

And so, thank you both for coming and joining me today on the Medical Humanities podcast. Davy, that’s for you to insert later.

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