Death Panel podcast host Beatrice Adler-Bolton speaks with Alice Wong about Alice's campaign to reinstate a mask mandate at UCSF, a hospital system home to a number of physicians who have played an outsized, deleterious, role in advocating for a premature end to covid protections.

Find Alice’s call to action here and our and letter template, written by Abby, here.

Alice Wong 0:00

Remind yourself it never had to be this way. And that all of us can resist in big and small ways. And we will not be erased, no matter how hard these bastards try.

[ Intro music ]

Beatrice Adler-Bolton 0:40

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So we have a great interview for you today, but before we get to that I just want to set up what we’re talking about and why we’re joining up with our guest to ask for your help with something.

Today I’m speaking with Alice Wong, longtime disability justice activist, writer, and editor. Alice is someone whose work we’ve been indebted to for many years, and personally I really appreciate her. We've had a lot of fun working on this interview. 

Alice is the author of the book Year of the Tiger: An Activist’s Life and the founder and director of the Disability Visibility Project, the host and co-producer of the Disability Visibility podcast which ended in 2021,  and Alice is editor of the anthologies Disability Visibility: First-Person Stories from the Twenty-First Century and Disability Intimacy: Essays on Love, Care, and Desire, which is forthcoming in April. 

Alice recently had a medical emergency that required a trip to the emergency room at UCSF Health, which is the hospital at University of California San Francisco. Alice’s trip to the ER was traumatic and harrowing to say the least, and that was exacerbated by the current situation of a lack of masking and no broad mandate for masking in healthcare settings. Alice is someone for whom a doctrine of “one way masking,” or “masking optional” structurally fails specifically because Alice can’t mask, she is a full-time vent user with a tracheostomy and uses text to speech software to speak.

As a result, Alice has launched a campaign to rally public pressure on UCSF to reinstate mandatory masking throughout its hospital system, and today’s episode is all about that campaign.

Now, obviously, UCSF is only a single hospital system. And the fact that masks are not required at hospitals across the US is a systemic problem that the CDC, CMS, or the Biden administration more generally, can and should intervene in. But we here at the Death Panel think Alice’s campaign is an important one. Not just because it’s important to protect Alice and the many people like her who don’t have as big of a platform as she does. But also because UCSF itself is a highly symbolic site of struggle. By which I mean, over the last few years, a number of prominent physicians within UCSF have played an outsized role in pushing to undo Covid protections or in otherwise minimizing the pandemic and minimizing long COVID. Many will undoubtedly already know who I’m talking about here, but this list runs the gamut from Vinay Prasad — who just came up in Monday’s patron episode — to Monica Gandhi, Bob Wachter, Tracy Beth Hoeg, and more.

The point is, with figures like these in prominent positions, we here at Death Panel think that if a mask mandate can be reinstated at UCSF, it can happen in any other hospital system or healthcare setting. This feels especially relevant given that even the CDC itself caved to public pressure last week and sent its draft infection control guidelines back to the drawing board.  And so even if you are not in the Bay Area, or even the US, I hope by the end of this episode you feel comfortable sitting down and writing a quick letter to UCSF to push for a mask mandate. 

One last thing before we go to the interview: this week we happen to have a lot on masking. If you haven’t heard it yet, Monday’s episode in the patron feed is a long discussion between Abby, Jules, and myself about how masking is a symbol of solidarity and why masks seem to upset a certain segment of libs and conservatives so much.

Anyway, on to the interview with Alice. And once you’ve heard it, or if you just want to stop right now and help out, there are links in the episode description to some sample language you can use to contact UCSF.

[Chime]

Beatrice Adler-Bolton 4:48

Hi Alice, welcome to the Death Panel, it’s so nice to finally have you on the show.

Alice Wong 4:52

Thanks so much for having me and it’s always nice to see more disabled podcasts out there in the world. For folks who wonder why I sound like a robot, it’s because in the summer of 2022 when I was hospitalized at UCSF Health due to a series of medical crises and lost the ability to speak, eat or drink by mouth, and became a full-time vent user with a tracheostomy. So the text-to-speech app I’m using today may mispronounce some words and definitely does not convey my sparkling, rage-filled personality but you all can get the gist.

Beatrice Adler-Bolton 5:33

I use a text to speech app to read text to me because I’m blind and the mispronunciation is so real. I use a voice for mine called UK Daniel, and listeners may recognize him from the patron bonus episode teasers. We’ve used UK Daniel as a kind of “character” on the show for many years and I picked his voice because it’s the same robot voice in an artwork that I love that is about “seeing”—it’s an instructional video for making yourself “unseen” in an “over-visible” world. 

When I needed to pick a robot voice to help me read, I picked that one because it made me think of this artwork when I used it. That helped with some of the shock, rage and frustration of adjusting to a new adaptive technology and the more extreme loss of my vision that happened in 2017. These robot voices can become really intimate characters in our lives, a part of disabled life that is not often talked about—so I’m glad to have another robot voice other than UK Daniel on the show. Did you get to pick the voice you use?

Alice Wong 6:35

Robots of the world unite! My app is called Proloquo4Text and among the standard American accents I could choose from I went with one named Elizabeth. While none of the voices truly match mine, she’s the one I can tolerate with best. I’m delighted to know Daniel is a character on your podcast and I hope we have more nonspeaking people and people who use these kinds of voices in podcasting because as you, Phil, Artie, Jules, and Abby know full well that the voice of podcasting and radio is this very normative, smooth NPR sounding speech that is clearly white. It burns my biscuits to no end whenever I hear about diversity in media, it does not include a diversity of the way actual speech sounds, even if they are accented or dysfluent. But that’s a topic for another day. 

Beatrice Adler-Bolton 7:36

Now, getting into what we’re here to talk about today. Just quickly for listeners who might be unaware of the context, can you briefly explain what happened on your trip to the ER recently, especially when you tried to advocate for staff to mask around you at UCSF and why the lack of respect for your request, and the lack of masking at the hospital by other patients and staff, made the already exhausting process of seeking emergency care that much more of a problem?

Alice Wong 8:05

Even before I had my tracheostomy, I was a high risk person for COVID due to my respiratory failure because of my neuromuscular disability. I’ve been sounding the alarm since 2020 with other sick and disabled people about the pandemic about how many marginalized communities are going to be abandoned by the state and rendered expendable by the medical industrial complex. I started using a g-j tube, a feeding tube that is actually two tubes that go into my stomach and small intestine for feeding, hydration, and medications since 2022. Whenever I have a clogged tube, I get it replaced as an outpatient procedure at interventional radiology. Last week it happened again and the earliest appointment was after the weekend. I typically make do with my other functioning tube but this time things went sideways, my tube started to come out a bit and the stoma site at my stomach became very painful along with my abdomen that became distended, tender, and rigid. Like a lot of other sick and disabled people I have a high pain threshold and try not to go into the ER unless absolutely necessary. I could not tolerate pain and had to come into the UCSF Health ER during the weekend to get it examined and replaced. Every hospital is a place filled with pathogens and patients coming in will be exposed to some degree, this is a realistic expectation. However, from the moment I arrived and signed in, I knew I was unsafe with a waiting room full of coughing people who were mostly unmasked and many health care workers unmasked or only wearing surgical masks which evidence clearly shows is less effective than a N95 or a respirator of higher quality. This is all happening during what’s described as the second highest surge. My request for anyone entering my room in the ER to wear an N95 mask resulted in a respiratory therapist who came in being passive aggressive about it, claiming that it wasn’t necessary since I was not in his words “airborne” which was deeply disturbing to me about his lack of understanding of how airborne viruses work and that I was not the infectious one. I was the one surrounded by infectious people in an ER overflowing with patients in the hallways and rooms. I was filled with a sense of foreboding and prayed to get my tube replaced as soon as possible so I could go home. Since it was a Saturday, no one was available at interventional radiology who does these procedures which required me being admitted to the ICU until Monday at the earliest. I experienced a lot of medical trauma being in an intensive care unit ever since I was young and most recently in 2022 so I was incredibly scared and wondered if this would be the time I would get COVID which was prescient since I wrote about this in my recent column for Teen Vogue about the current surge. After many calls by doctors, I was able to get my tube replaced on Sunday but my experience during the procedure, which I went through multiple times, became one of the most terrifying ordeals I endured and I have been through a lot of shit so this is saying a lot. One of the techs who prepared me for the procedure had a persistent cough and only wore a surgical mask. Because I couldn’t speak, I couldn’t communicate to tell the nurses about this and how he should be careful because of my tender abdomen. When he swabbed it and created a sterile field, I burst into tears due to the massive amount of pain he caused. The procedure was unusually long because it was complicated and the entire time I was silently crying in pain even with multiple doses of pain meds. As I’m telling you this now I am tearing up just thinking about it and I rarely cry. The agony and distress from the pain caused my heart rate to go over 200 beats per minute and my eyes became swollen after crying nonstop for two plus hours. I couldn’t even audibly sob or scream at the top of my lungs for help which only compounded my trauma. When it was over, I was fucked over again when my ICU care team suggested my tachycardia was due to anxiety rather than my extreme pain and rage. I informed them about my intention to file a complaint and I was told UCSF Health masking policy is optional and that they only had to wear a surgical mask, not even an N95 which I believe endangers all visitors and patients whether they are high risk or not. They gaslit me about my valid concerns of mistreatment. While I should have been resting and recovering once I got home Sunday afternoon, I already started to mentally draft the complaint and how to organize a N95 mask mandate at UCSF Health. To sum a long story up, my three main issues were about inadequate masking by staff, inadequate pain relief, and discriminatory treatment regarding communication access. I only stayed two days at the hospital, but it was as horrific as the four plus weeks I spent at their ICU almost two years ago. I’ve been dehumanized frequently by the healthcare system but this time was singular in how it crushed my personhood and rendered me powerless and perceived only as a burden.

Beatrice Adler-Bolton 14:21

Thank you for running through that Alice, and I’m sorry to dredge up the trauma again, but I really appreciate you laying that out for listeners so everyone is on the same page. I’m filled with blind rage (pun intended) just hearing what happened to you, and we have so much we want to talk about. But, before we go any further I want to make sure we touch on the call to action at the top. What are you asking people to do? Can people outside of the Bay Area, California, or even outside of the United States answer your call to action? 

Alice Wong 14:52

Who doesn’t love a good disabled pun? And I didn’t mind laying it all out there for your listeners because I want to disseminate my story widely. What happened to me is not an isolated local event. Everyone should fight for mask mandates in healthcare settings, which is the bare minimum. On my website I posted the complaint I filed with the UCSF Health Office of Patient Relations and cc’d key leaders in the administration with my demand for a mandate of N95 masks for all UCSF Health staff and any visitors and patients. I believe in people power and call on all of you listening to the podcast to inundate UCSF Health with the same request regardless of where you live because what I outlined and the policy recommendations I made are an attempt to change the system. Institutions will only be prompted to change from public and political pressure rather than doing the right thing. People can find the contact information, steps they can take, and how they can share this request in my blog post. I expended a lot of labor and provided free education to UCSF Health. I did this not only for myself but for everyone and I hope it will encourage people to advocate for mask mandates at their local hospital, department of public health, or long-term care facility. Collective action for collective liberation; we can do this together and fight for a better future. 

Beatrice Adler-Bolton 16:33

Mhmm well put. Why do you feel like pushing for mask mandates in healthcare settings in particular is an important site of struggle?

Alice Wong 16:42

It’s bananas to think that mask mandates in healthcare settings are controversial when healthcare workers before the pandemic mask during surgeries and dental procedures for example. The term mandate is particularly challenging because people don’t like to be forced into doing anything while forgetting all the things they have to do to participate in society. I think of immunocompromised people in particular who wear masks to protect themselves from others and even though that is not reciprocated by their providers which is stunning because mask wearing isn’t an arduous hardship for most people despite what’s been depicted in the media and on social media. Mask mandates in healthcare settings is the bare minimum when it should be commonplace in other places such as schools and indoor settings with large numbers of people especially since most settings still have inadequate ventilation and filtration. I am particularly betrayed by healthcare workers who should know better but don’t. The respiratory therapist I mentioned earlier wore his surgical mask under his nose which made mask wearing a performative farce. A simple, low-tech, cost effective intervention that can reduce the transmission of not just COVID but other airborne pathogens should be standard of practice in all healthcare settings which is aligned with the purpose of health care, to actually, you know, save lives and help people. It seems like the oath to do no harm is meaningless. The fact that mask mandates in healthcare settings is so contested is reflection of the biases and structural inequalities inherent in medicine which shows how long we have to go for a modicum of equity. Masks are also a visible sign of a crisis that most people want to bury. For example, I just read this piece in the January 24th issue of The New Yorker by David Sedaris who wrote, “One of Dawn’s lungs collapsed when she was in her late fifties, so she was super cautious about covid—kept her face covered long after everyone else had returned to normal. We were in Chicago together, at O’Hare, in the spring of 2022, when I told her she needed to take it off. “But—” she said. “Let it go,” I told her. “Everyone else has.” I felt like a director coercing an actress to unhook her bra for a sex scene. “Come on,” I said…She took off her mask, and then of course immediately got covid—a bad case, too. All my fault, but she’s never held it against me.” End quote. David Sedaris is one of millions of people who want to travel, go to parties, and forget that high risk people like his friend Dawn exist and would rather her suffer from a COVID infection rather than look at her with a mask. With friends like these, you don’t need enemies.

Beatrice Adler-Bolton 20:03

Seriously fuck David Sedaris, and the casual violence of bullshit peer pressure like that. The ignorance and arrogance on display is astounding (though not surprising) and thoroughly and absolutely infuriating. And, setting aside assholes like Sedaris for a second, I just want to say that I really appreciate this call to action Alice and the way you have transformed your own personal experience of gaslighting, medical neglect, and dehumanizing bullshit into a weapon against everyone’s disposability. A few things really stick out to me from what you said at the top, and we’ll talk through some ideas that will hopefully give folks inspiration to write their own letters to UCSF or start to organize a campaign or anything like that. First, is the incredibly low bar for proof when anti-mask arguments are made. 

My co-host Phil always talks about how you really don’t need much proof or rhetorical logic to your point if you’re arguing in favor of hegemony and the interaction you recounted with the respiratory therapist in the ER is such an enraging example of that. You said: “My request for anyone entering my room in the ER to wear an N95 mask resulted in a respiratory therapist who came in being passive aggressive about it, claiming that it was necessary since I was not in his words “airborne””—I mean—what the hell did he even mean by “airborne”?? It makes no sense. But the thing is: and this is Phil’s point, it doesn’t actually need to make sense when it is an argument upholding the dominant reality which in this case is both an incredible social pressure not to mask, and also a culture‚ definitely not unique to UCSF, but seemingly on quite flagrant display at UCSF, of subjugating patient expertise, pathologizing needs and preferences despite the official policy for masking being all about individual choice and respect, and just really the kinds of weaponized disbelief, and belligerent, condescending reactionary bullshit that typified healthcare encounters for all types of marginalized people.

Second, what I think your story here also really shows is the material harm that comes from medical neglect and not just the obvious stuff, but how the small things build up, each making the power differential between the patient and health care workers worse. Communication access in particular is incredibly important and many providers don’t even consider these failures to be medical neglect. But this is one of the most inaccessible parts of healthcare. And so I hope listeners can just consider this power differential that Alice described for a second, because this is why mandating masking and not just making recommendations are important. Every single thing you have to advocate for when you’re getting emergency or otherwise acute care is critical, and takes a lot of energy, technically the UCSF Health policy is “Staff in patient care settings are still required to wear face coverings.” So there’s either a direct violation of the guideline, if people are straight up refusing, when I called the hospital’s information desks and general phone numbers asking about planning a visit to a sick friend in UCSF as an immunocompromised person, I was told by the hospital front desk that though there are requirements for staff to wear face coverings, they are no longer enforced. The ER said they were, clearly face coverings are too vague and that is part of the problem. So either explicitly or in spirit, the care staff during your visit were even resistant to the bare minimum policy that is still in place at UCSF. 

Imagine how much power would be given back to you in this scenario, Alice, if for example that UCSF guideline said “Staff in patient care settings are still required to wear N95 respirators,” instead of the vague face coverings. It’s really that simple, but it would be transformative but, again, balancing power between care givers and receivers is not really on the agenda for UCSF… clearly. Anyways, I’m not trying to make this a health care workers vs. health care receivers thing, it’s more to say that in the ways in which the state and health care employers have specifically abdicated responsibility for mandating masking, passing it off to personal choice, has fucked over both groups, care workers and seekers, and specifically what must suck for health care workers who are chill, is that it’s likely empowered their worst crank colleagues to be even more insufferable in their flagrant displays of disdain towards patients asking them to respect their right to not get sick. The end of mask mandates in many ways has been way more of a collective act of discipline or punishment than the imposition of masking was in the first place—it’s just being carried out at the individual level now, and the group of people who feel oppressed or excluded has been inverted, from those who didn’t like wearing masks to those who literally need masks—and better yet collective masking—to survive the ongoing pandemic. When people are assholes about masking, it’s hard not to hear, “I don’t think you deserve to live,” under those circumstances. 

Would you agree with the assertion that by refusing to mandate use of high quality N95 masking UCSF (among many other sites of care all over the US and the world) is structurally guaranteeing that patients are exposed to interpersonal harm, conflict in care encounters, pathologization and neglect—and that they are, in refusing to mandate N95 masks, actively tipping the balance of power, already not in our favor, further towards the quote unquote vaxxed and relaxxed crowd—essentially these institutions are creating the conditions for hostile care encounters, forcing patients to take on this advocacy in a kind of privatized 1:1 way or otherwise be forced to be exposed to Covid, RSV, the Flu, and who knows what else, just to save them from dealing with angry emails from fans of Vinay Prasad’s substack—just to give one, you know “hypothetical” example of the type of guy who might complain about mask mandates?

Alice Wong 26:11

First, Phil is right and the bar is so fucking low. The power dynamic in healthcare settings is designed where the person in power can say whatever shit they want while patients have to give citations, articulate clearly and effectively, and have the presence of mind to push back in what can be a fast-moving, acute situation. I’m a pretty experienced activist who knows how to code switch but this latest experience left me shook. I had a caregiver with me the first day and a family friend who helped me speak with the ICU team the following day because I was so beaten down. Even with all of my social capital and resources, I was reduced to nothing. And I think of all the patients on my floor who are alone, scared, and suffering. This is one of many reasons why I plan to stir shit up with everything I got and call on others to join me in this collective action against medical ableism. Second, I am so glad you brought up how things build up with disabled and sick people especially those who happen to be multiply marginalized or activists. It is a social death by a million cuts. The levels of cumulative exhaustion takes a very real toll on one’s well being and it unsurprisingly prompts people to discontinue advocacy. Right now I’m working on my next column for Teen Vogue which is a follow up of sorts to my last one about the surge and need to mask. I plan to share not only what happened to me but the absolutely inappropriate and brazen way people on social media responded to my tweets from the hospital. I became doubly traumatized and it’s left me seriously reconsidering a withdrawal from social media altogether. And this is what sucks because clearly these platforms are poop-filled dumpster fires but for so many of us it’s been a lifeline, a way to organize, and a place where we found community for the first time. Third, in the scenario you described I have to be honestly cynical and say no institution is interested in ceding power or shifting any power differential because it’s not in their interest and this is by design which is why way before the pandemic Black and brown people in particular have always known and talked about medical racism and misogynoir. When people claim disabled people are exaggerating claims that the  state’s response to the pandemic is tantamount eugenics, they cannot see or understand it because they have never experienced systemic oppression or are quietly complicit in the deaths of undesirables as a way to uphold white supremacy, ableism, and hypercapitalism which keeps the engines of productivity running. And if any of your listeners are rolling their eyes thinking, geez, what a social justice warrior spewing all these woke terms, I would counter with how nice it is for you to have choices and to not have to confront your deep rooted biases you dudebro pearl clutching reply guy. And yes, I totally agree with your assertion, and by the way this isn’t some grand conspiracy, it is out there plain to see, the intentions behind the lack of N95 mask mandates in healthcare settings and other dangerous policy decisions like California’s new COVID isolation policy of asymptomatic people. We live in a world where disabled people are considered scammers, taxpayer burdens, high utilizers of care, nothing but a bunch of pathologies and expenditures that drain the healthcare system which justifies physician assisted suicide, healthcare rationing,  institutionalization and incarceration to keep us out of sight, and the demonization and criminalization of poor disabled people. It’s just a part of the larger narrative and cultural belief that disabled people are passive consumers of precious resources and people who are better off dead. Again, if you think I am exaggerating, do some reading on the Ugly Laws, history of eugenics, and work by disabled writers and activists. End rant, ha ha. But not really ha ha because I’m stone cold fucking serious.  

Beatrice Adler-Bolton 31:00

[ Laughs ]. Very well put. And, you know, we have talked a lot about masking on Death Panel over the years, from the case for mask wearing, to the role of the rhetoric around masking in the sociological production of a premature “end” to the pandemic, and as an important aspect of general accessibility a tool that I used and many used before the pandemic to negotiate access to social rights and public space as an immunocompromised person—and one of the things we’ve especially focused on in the last year is how critically important it is to have masking be a universal population level intervention—especially in healthcare settings—mask mandates are so important. 

Our main argument for mandates is that as an intervention it's most effective when everyone is masking, not just in terms of pure efficacy but also in terms of negotiating the social and emotional aspects of it, and balancing the power differentials which are particularly stacked against patients in the ER, which was definitely a central dynamic in your recent experience at UCSF. Could you speak to how you view the importance of masking, and what your arguments in favor of masking are? 

Alice Wong 32:10

Masking is one of the most basic lines of defense in preventing the spread of disease but it only works when the majority of people do it as a form of community care. One-way masking framed as an individual responsibility versus the status quo is one public health failure out of many. The state is only interested in a return to quote unquote normal. If people were required to wear masks in a healthcare setting it would mean the pandemic is still a threat as the state pushes the argument that the availability of vaccines and treatments are enough and prominent physicians such as Doctors Bob Wachter, Vinay Prasad, Ashish Jha, Leana Wen downplay the the pandemic because they believe the majority of the population, that is non high-risk people, are going to be ok and that people like me are outliers and acceptable losses. And this is why the virus will continue to mutate, causing more surges, and people developing Long Covid.   

Beatrice Adler-Bolton 33:16

Mhm. And, can’t forget UCSF’s own Monica Gandhi and Tracy Beth Høeg, who along with Prasad and Wachter are all affiliated with the UCSF School of Medicine. It’s a running joke in several Covid group chats I’m in to say things like “what do they put in the water over there to make these people so eager to minimize the pandemic?” The focus on masking as a personal choice has made it seem like the only way masks should be used is to protect the individual wearer. But you’re in a situation where due to the tracheostomy, you can’t really “one way mask”—and yet even in the ER and ICU at UCSF Health, which at least technically, according to their website requires “face coverings” in patient care settings, community care and masking are so far from “common sense” that your un-and-under treated pain and elevated heart rate were charted as anxiety. 

This is why the late Marxist disability theorist, Marta Russell, wrote in her book Beyond Ramps: Disability and the End of the Social Contract, that what happens to disabled people, “like canaries released into the coal mines to detect whether there was enough oxygen in the air to survive, is a barometer for the "progress" or lack of it in our over-capitalized civilization. Disability and disability policy—past, present and future—is a tool for all to rate our present socio/economic order.”

Russell, in that book, also writes extensively on how the construct of “normal,” as it’s imposed at all levels, is part of the construction of disabled people as non-human and disposable. Do you mind elaborating on a point I think you’re making here that is still kind of subtext, but also mirrors a question that Russell challenges us to ask, which is who does “normal” serve, who or what does the “return” to a so-called “pre-pandemic normal” serve? It’s not so-called able-bodied people that’s for sure. I mean, as you mentioned before your extended ICU trip two years ago was less awful and traumatic than the two days you just had, but this doesn’t just apply to people like us, to the vulnerable and high-risk, as you mention, we are not outliers or acceptable losses, but the imposition of “normal” demands that, and it won’t just affect disabled people, because what happens to us doesn’t happen in a vacuum.

Alice Wong 35:35

So many horrible doctors are out there platformed by major newspapers have played a major role in the direction of the pandemic since the beginning. I feel like we need a bingo card for the most outlandish, harmful, and ableist things these people promote. I love me some disability studies and we are not only canaries but we are oracles because many of us foretold what would happen in the last four years. Oracles speak uncomfortable truths and prophecies and living at the margins gives you a certain perspective on the centered normates who do not want their comfortable bubble threatened like the selfish piece of shit David Sedaris who is such a beloved writer. And what’s wild is that by maintaining the normal, those very so-called able-bodied people like David are harming themselves too, not just us. I think normal serves the machinery that maps out the land of the normal. The normal doesn’t serve any individual but perhaps institutions and infrastructure that undergirds what we perceive as society. That might not be a good answer but that’s where my nerdy sci fi imagination takes me.  

Beatrice Adler-Bolton 36:52

People who can’t mask have really been made invisible as part of the rhetorical work that has gone into undermining masking as a universal practice, and layered protections in general. Why do you think mask mandates are important, not just allowing us as patients the “individual choice” of masking? 

Alice Wong 37:14

Masking should not be political but it has become so in America with COVID denialists and minimizers framing masking as an attack on freedom and individual rights rather than common sense. Some people, such as myself, cannot mask due to our disability. We rely on others to keep us safe. This is what community care is all about; the recognition that we are all interdependent and our wellness is tied in with the wellness of others. Masking, like the banning of smoking in public spaces, occupational health standards, and speed limits for driving, is a public safety issue which does not take away an individual’s freedom or civil rights. Every advancement in safety and infection such as handwashing before and after medical treatment, is met with intense scrutiny and backlash until social attitudes catch up with the science. Since we are living in an age of significant misinformation, propaganda, and anti-intellectualism, it is particularly challenging to get people to mask because privileged people like David fucking Sedaris want to forget the last four years and quote unquote get their lives back while fucking over marginalized communities who are disproportionaly impacted by the pandemic. 

Beatrice Adler-Bolton 38:43

I think another way you can put it is that right now we are all engaged in a struggle to normalize masking. Right now, masking, much like the identity of disabled person, chronically ill person, immunocompromised person, is seen as a negative, a deviation from the expected or desired outcome, and as such “normalcy” becomes a tool of devaluation and dehumanization—as well as a tool of social control. The negative connotations of these identities is not inherent, the person who masks is not, in fact, a paranoid “brand of person” with “impressive stamina” as Pod Save America’s Jon Favreau recently argued, or as some allege people who mask an over-inflated sense of victimhood or warped perception of risk, an inability to accept change, etc. Masking is many things, many people who mask do it for a variety of reasons, but it’s rarely because of any of these negative reasons that are projected onto people who wear masks. 

Like with disability, chronic illness, and for example accusations of malingering, all of which Artie and I talk about a lot in our book Health Communism, the disposability of the vulnerable is not a fact of nature. Full stop. That’s the bottom line. In the book, we discuss the concept of the surplus class, encompassing not just disabled people but anyone labeled as "surplus," which we argue is not describing an identity but an economic relation, a relation to production, which is why we assert it’s a surplus class not just a surplus population.  People enter this class when their relationship to work and tax-paying changes, and the disposability of the surplus class is naturalized as an inherent quality, but it's imposed by our political economy—an ideology that becomes common sense, mistaken for a fact of nature.

Individuals like “Pod Save Jon” may not be aware of the root of their ableism, valuing lives through an economic lens stacked against us. Disabled life fundamentally challenges this dominant notion of disabled life as inherently devalued life, contributing to the discomfort that people display when they are being ableist. The way people act towards us during experiences of ableism is not a natural fact; they are not biologically programmed to dislike disabled people. Instead, it is part of an ideology that underlies our political economy—an ideology that is man-made and requires maintenance to sustain. This means the dominant baseline of naturalizing the ways we dispose of each other can, should, and must change.

COVID-19, focusing on individual risk, has led to the organized abandonment of pandemic response by the state, shifting protection to the private market. This shift has various consequences—social, biological, and economic—demanding political repercussions. The political repercussions are things that we need to make happen, they don’t just happen on their own. The disposability of surplus populations in capitalist societies, including disabled people, is deeply ingrained and one of the biggest ideologies we are up against with regard to COVID. Left political projects will fail if they accept the argument that certain populations are irredeemable eugenic or debt burdens and normalize their disposability. 

This can manifest in various ways, from organizers dismissing requests to mask at protests or meetings to large-scale divestment and state retrenchment, as seen in the so-called Medicaid unwinding. Which is why a revolutionary stance must reject this framework and recognize the economic system as a transitory social order for resource allocation and distribution, intentionally stacked against the most vulnerable. It is not a reflection of some inherent "law of nature" that we should also be upholding in our movements.

Currently, we are engaged in a struggle that disabled people are familiar with — refuting the social meaning and power that words and ideas have in tagging and labeling individuals as worth more or less, as burdens, or as disposable. Part of this project involves asserting new meanings and challenging the way these labels exist as de facto negatives. This requires asserting positive frames and conducting political education around community care.So towards that, can you talk about what community care is, for listeners who may not be familiar, and how the push to “get back to normal" is basically the antithesis of community care?

Alice Wong 43:37

Community care is giving a shit for others. It’s mutual aid, like the recent project I’m a part of called Crips for eSims for Gaza with Jane Shi and Leah Lakshmi Piepzna-Samarasinha. We can band together and offer what we have for a larger goal that will benefit others without any personal ulterior motive. As we wrote in a blog post, “There is power in numbers. We know that as disabled, sick, neurodivergent, Deaf people we are often poor or broke, but we can pool our money to collectively make a big difference. We also know that there is a rich tradition of poor and working class people donating more than middle class and rich people in general, and of poor and working class disabled people sharing what we have as a form of collective access and solidarity.” End quote. It’s about keeping each other safe when you cannot rely on the state such as Heather Ringo’s recent piece for the Disability Visibility Project profiling COVID safe businesses in the San Francisco Bay Area. Cecilia Senocak, a small business owner, said, “I want anybody to feel safe and comfortable coming to me for business. I am happy to take any precautions that they would prefer. And to encourage fellow COVID-cautious people to challenge their burnout to find community, to remind themselves they are not alone. It’s difficult but it’s important to continue to keep ourselves and each other safe. We will never regret that. That will make me feel so comfortable if I come to your business or shop to know people are looking out for me too.” End quote. It could also be as simple as making a bowl of soup for a friend as Leah Lakshmi Piepzna-Samarashinha wrote about disabled mutual aid, “I’ve seen a lot of abled new converts to mutual aid sigh romantically at all the ‘community care!” memes out there. When I look at the swoony graphics and memes about the joys of care, I remember my friend, a disabled, fat, mixed race queer and trans elder, texting because their PCA had come to work sick, not wanting to put them in a bad spot, and worked without a mask on for a few hours before telling them they were ill. My friend, worried they’d been exposed to COVID, texted a bunch of people they knew and said, “Ok, we’re going to set up a system, everybody sign up on this Google doc. I need someone to text me in the morning and at night, to make sure I’m responsive. Let’s do it for the next four days, I’ll get tested too but I want you to check in on me. If you don’t hear back from me, I give you permission to call 911, let them know that I’m fat and they need to bring an accessible stretcher and this is where my apartment is.” That’s the kind of shit I’m talking about. It’s love, and it’s the real fucking life-and-death deal. And it’s not something that my friend would’ve trusted some random abled on a mainstream mutual aid Instragram with. What they did worked because of crip on crip relationships and trust that had been building for years.” End quote. Using these examples is the best way I can illustrate community care and I hope they are helpful for your audience. 

Beatrice Adler-Bolton 47:24

Thank you for that Alice, this has been so fun, I have one final question. It’s been a long couple of years, I’m high risk, because I’m immunocompromised and disabled, you are high risk too, many of our listeners are in the same boat as well. And it can be really difficult enduring this endless drumbeat of people saying things like society should move on from us, that our deaths are acceptable costs or encouraging news, that we will fall by the wayside, that our deaths are pulled from the future, and that leaving us behind is the only way to “return to (so-called) normal.” Is there anything you’d like to say to the other folks like us, the high risk, immunocompromised, and disabled people who have been, for years, calling attention to the interdependent dynamics of COVID that require a collective response, and thrown under the bus far more often than we are listened to?

Alice Wong 48:18

My main message is you are not alone but ableism, like white supremacy, is designed to pit us against each other to fight for the crumbs. We can build power, collaborate, and stir shit up because our cause is righteous and true. It is exhausting just to exist let alone defend our humanity every day. Honestly, I think what I went through last week brought me right to the breaking point. I have never felt so beaten down and defeated. It’s important to admit those dark scary thoughts and not gloss things over just to move on or put on a brave face. Lean into your rage, despair, and fear. Being honest with ourselves and others strips away the need to constantly perform and advocate. Remind yourself it never had to be this way and that all of us can resist in big and small ways. You are a goddamn oracle and your wisdom is a light that can show us the way forward. And we will not be erased no matter how hard these bastards try.   

Beatrice Adler-Bolton 49:30

Thank you so much Alice. I really appreciate you taking the time to talk with us today, especially since you should be resting and recovering—I know our listeners will really appreciate getting to hear from you and I hope listeners take you up on your call to action and write a letter or two in support of mask mandates in healthcare settings. Again, Alice, deeply honored to have you on and so appreciate you taking the time, thank you again.

Alice Wong 49:54

Thank you so much for having me on. I really appreciate your support and solidarity. 

Beatrice Adler-Bolton 50:00

Listeners, if you want to follow Alice on twitter she is @SFdirewolf, and before I go, just wanted to reiterate Alice’s call to action and talk through some of the steps she’s asking people to take: 

Write a letter and email it to UCSF Health and demand that they require that all staff, visitors, and patients wear a N95 mask in all of their locations.

Alice is asking that you direct your email to the Office of Patient Relations, in her blog post about it on Disability Visibility is a list of all the other UCSF administrators she’s like you to CC, as well as an email she’s asking folks to BCC so she can track all the submissions.

Alice is asking you to share why you think a N95 mask mandate it’s important for public health and if you are a patient or reside in the SF Bay Area please say so—though you do not have to be to send a letter. Do not claim to advocate for or on Alice’s behalf but feel free to cut and paste the primary and additional policy recommendations from her letter and any other systemic changes you would like to argue for. Share the reasons you support mandated masking in healthcare settings, wouldn’t it be nice to make some of these minimizers who work for UCSF have to mask at work again, that would be some refreshing poetic justice, and Alice did not provide a sample letter because she wants you to tell your story and experiences. 

So again, if you need some more inspiration for writing your own letter and there are links to a template we made in the episode description, written by our very own epidemiologist, the brilliant Abby Cartus, and there’s a sample letter from Alice with instructions on the call to action and all the emails you’ll need that also gets into her experience in the hospital and there’s also a second sample letter from disability justice activist, Leah Lakshmi Piepzna-Samarasinha linked there as well. 

Also don’t forget to check out Monday’s episode in the patron feed which is a long discussion between Abby, Jules, and myself about how masking is a symbol of solidarity and why masks seem to upset a certain segment of libs and conservatives so much. And if you’re not a patron, there’s also the two episodes with Ellie Murray about mask mandates, one we put out a few weeks ago in our best of 2023 roundup, “The Sociology of Mask Mandates” with Ellie Murray, and one from March of last year also with Ellie Murray called “Why Mask Mandates Work” and of course there’s also an episode on Outdoor Transmission with Dr. Theresa Chapple from 2022 that may be helpful as well as our two conversations with Jane from National Nurses United where we talk about infection control and masking in hospitals in the context of all the attempted changes to those guidelines that the CDC HICPAC committee was trying to make that I mentioned at the top— all of those episodes are full of great points you can pull for your letter.

To support the show become a patron at patreon.com/deathpanelpod to get access to our second weekly bonus episode and entire back catalog of past bonus episodes. And if you’d like to help us out a little bit more, share the show with your friends, post about your favorite episodes, pick up a copy of Health Communism at your local bookstore, and Jules’s new book, out now, called A Short History of Trans Misogyny, or request them both at your local library and follow us @deathpanel_. Patrons we’ll catch you Monday in the patron feed, for everyone else we’ll see you later next week.

As always, Medicare for all now, solidarity forever, stay alive another week. 

[ Outro music ]

Links and further reading

Alice Wong’s call to action and letter template at Disability Visibility Project here.

Abby’s template here.

Leah Lakshmi Piepzna-Samarasinha’s template here.

Alice Wong’s most recent column for Teen Vogue: COVID Isn’t Going Anywhere. Masking Up Could Save My Life.

Alice Wong, August 2022 (Disability Visibility Project): My ICU Summer: A Photo Essay

Alice Wong, 2020 (Disability Visibility Project): Disabled Oracles and the Coronavirus

Alice Wong, March 2023 (Teen Vogue): The “Unwinding” of Medicaid Coverage Will Be Difficult for Disabled Americans, Leave More People Uninsured

Alice Wong’s 2023 interview with KQED: Alice Wong: I Still Have a Voice

Alice Wong, January 2024 (Disability Visibility Project): Disabled Outrage and #PodSaveJon