By Beatrice Adler-Bolton (CUNY) & Sabrina Ward-Kimola (Concordia University)
First recorded on March 22nd, 2022
Beatrice Adler-Bolton (she/they) is a disability activist, co-host of the Death Panel podcast, artist and earning her master’s in Disability Studies at The City University of New York. She is also the co-author of Health Communism. Their work draws from the insights of disability studies and Marxist political economic theory to critique the commodification of health under capitalism, while also thinking towards new worlds of collective care.
The following interview, conducted by Sabrina Ward-Kimola (she/her), covers a short history of how healthcare and disability have been taken advantage of under capitalism. We talk about the changing landscape of COVID-19 policies and Beatrice’s work that addresses the relationship between disability and capitalism through the lens of disability activism that came before.
We begin with a discussion about the importance of disabled activist Marta Russell’s work today. We also speak about how theory and disability organizing of the 1980’s and 1990’s – which was also the peak of Russell’s career – informs theory and organizing of the present. Adler-Bolton recognizes how this era marked the height of the HIV/AIDS crisis in North America, which was simultaneously an important moment for political organizing around healthcare for marginalized communities. We conclude with a conversation about the ways that COVID-19 continues centuries-old dynamics of carceral logic, Wendy Hui Kyong-Chun’s revamp of Heidegger’s theory of technology, and the future of disability reappropriation of these historically violent institutions and technologies. Through this conversation, we show how history informs the present and how documentation plays a role in how we understand different legacies of activism/change.
Sabrina Ward-Kimola: Your work got me into Marta Russell, which led me to her magnum opus – Beyond Ramps [1]. In reading this book, I have been reflecting upon why I had never seen her cited previously. The analysis she brings to the table – the state of institutionalization of disabled people in the US – lends rare and important materialist insights to disability. Could you talk a bit about what Russell means to you and how she’s influenced your thinking?
Beatrice Adler-Bolton: Russell is not formally recognized as a disability studies theorist within the academy, which I think is ultimately because of her politics. She wasn’t formally in academia, which would normally be justification enough for exclusion of someone’s work from the scholarship, but disability studies is kind of different. There are many people who are in disability studies who aren’t formal scholars or don’t have their PhDs, but who are none-the-less important and often cited theorists and recognized parts of the discipline’s canon. But Marta Russell is not one of those theorists. Other than the Haymarket book of her work published in 2019, and an anthology edited in her honor called Disability Politics in a Global Economy published in 2017 by Routledge, her work is incredibly difficult to find. When I first heard of Marta Russell, I spent five months trying to track down her book Beyond Ramps. At CUNY she wasn’t mentioned on a single syllabus.
Marta was a scholar and wrote incredibly detailed and rigorous political economic critique. She was also someone who did a lot of organizing. She organized with Not Dead Yet and ADAPT and was active in the anti-war movement in Los Angeles during the war following the invasion of Iraq. Law and labor historian Nate Holdren talks about the way that an understanding of social movements is key to her Marxist analysis. Russell was working during the post-Americans with Disabilities Act (ADA) landscape in the US, where the disability rights movement was really oriented towards a campaign of legitimacy and rallying to be a part of the liberal political fabric of the United States — and that was a big project. She was very critical of this strategy and very critical of the ways that neoliberalism can engage in movement capture. I think she was calling out a lot of things she saw happening, which resonates with people now asking… well what happened?
What happened to the sort of movements that we had, and why did we not progress with the things that had been, you know, big moving goals that were being agitated? The ADA was a watershed legislation, that was going to allow disabled people to become full members of society through asserting their social rights as economic participants. Marta Russell was very much also ahead of her time, some of her criticisms of the ADA seem like they could have been made yesterday. I think her being left out is not some grand conspiracy: there’s always going to be the tendency for people who have Marxist ideas to not be welcome within dominant discourses and movements. And I think that’s what happened with Marta Russell. I think Russell was largely ignored by the mainstream disability community for her left politics, and then mostly ignored by the mainstream left for her disability politics. And it’s a damn shame because I think Russell’s theory — the money model of disability — which is the idea that people who are not workers, who don’t produce value for the economy through their surplus labor, can be reclaimed through other means is really important.
In another essay I wrote about Marta Russell’s money model for Blind Archive, I reflect on comments made by her frequent collaborator, Ravi Malhotra. He makes the point that, for so many people within the disability rights movement, transforming or amending the ADA so that it’s slightly better, has been the mission of the disability rights movement since its passage. Russell’s work critiqued this effort, and made the point that the ADA is, more than anything else, a mechanism that reinforces certain things for disabled people.
The ADA was originally sold as a welfare reform bill on the floor of congress, as a way to reduce the number of people off government support by getting them to work. If your entire goal as a political organization and intellectual project is trying to make small tweaks to that… of course if someone critiques you and claims what you’re doing is futile, that is not going to be welcome criticism. Nor is that going to be a critique that is incorporated into the lines of understanding in the social model or welcome in the academy. This critique was unwelcomed during Russell’s lifetime. She passed in 2013, but I think if she had been alive another ten years her work would have become more mainstream. I think it would have had some influence on contemporary disability theory, as we can see it already has had an important and growing impact. Unfortunately, still today there are very few people that even know of Russell’s work. But there’s a lot there to work with, a lot that provides generative inspiration for people working within the field now.
As a Marxist who thinks about disability, I owe it to Marta Russell to try and bring her with me as I talk to people about my work, because I couldn’t have sort of come to these conclusions in the way that I have without reading her work. At the same time, it feels like her work is almost unfinished. It’s piecemeal. The books she wrote are hard to find. I think it’s important for people to engage with her work to put more weight behind her ideas. I think the social model has become stagnant – the rise of concepts like crip time and the rise of analysis of chronic illness are things Russell was thinking about in the 90’s that weren’t part of the mainstream disability conversation at the time.
SWK: A lot of your work is collaboratively produced – from Health Communism [2] to the podcast. What is this dynamic like? How do you approach co-research and co-writing?
BAB: I’m a firm believer in the idea that no knowledge is singular, and that all learning is social. All good things are done together. Knowledge is a resource that you bring into the relationships you have, towards building knowledge together.
I’m incredibly influenced by one of my mentors from Cooper Union, author and political activist Marlene McCarty, who was a member of a group called Gran Fury, who many know the work of as the kind of the propaganda arm of ACT UP — though I’m not sure how many people know that Gran Fury was behind a lot of those iconic images like the “Kissing Doesn’t Kill” campaign. They made a lot of the iconic visual materials for ACT UP – they were a collection of artists, people who worked in advertising, graphic designers, and curators who decided to collaborate towards a very specific goal. Another former member of Gran Fury, Avram Finkelstein wrote about this in his recent book After Silence: A History of AIDS Through its Images [3], saying that the point of many of the images that they made were not simply to raise awareness of HIV/AIDS: “In essence and intention, the political poster is a public thing. It comes to life in public spaces, and outside them, is academic. Individuals design it, or agencies or governments, but it belongs to those who respond to its call… Authorship takes a back seat, and the public sphere resembles the exercise in collectivity we hope it to be.” I think in its best moments Death Panel functions in a similar way, it’s not just about the recording, but goes so much beyond it.
Artie and I have art backgrounds; we’re trained to wield this serious aesthetic theory background that we’ve honed over decades by spending a significant amount of our time thinking about media and messaging, thinking about cultural imaginaries and how aesthetics interfaces with that, how to make meaning, how to collaborate. We carry over this into our other work, like Health Communism and Death Panel, that all things that are good are done with other people.
I’m of the mindset, personally, that Marxists have to find ways to sort of facilitate our own work outside of the academy or established institutions, because we’re if we’re just-sitting around waiting to be accepted by the mainstream before we get going, we’ll be sitting and waiting until we die, unfortunately. So, our emphasis on collaborative knowledges both on Death Panel and in Health Communism comes out of a desire, and a need, to build alternative structures now – we need to be committed to long-term struggle and the only way to do that is to build independent and self-sustaining alternatives to the accepted pathways towards justice.
SWK: In your recent writing and podcasting, you have critiqued COVID reopening policies by highlighting a narrative employed by media and government described as “deaths pulled from the future”. [4] While this narrative frames the continued death toll resulting from COVID-19 as inevitable, you employ a Marxist political economic analysis to argue that these deaths have deep roots to the social determinants of health under capitalism. Could you talk about how the commodification of disability has strong links with social determinants of health and well-being, and how this dynamic has played out in the context of the pandemic?
BAB: Absolutely. We are seeing so many lives so thoroughly discarded during the pandemic because of old, deep-seated values which are embedded in our political economy that devalue lives deemed to be ‘less productive’ (to the economy). This is not a new phenomenon; this is as old as capitalism itself. To understand the devaluing of disabled people is reliant on the commodification of disability, I think you really do need to dig into this history a bit, and in the process, you come to truly understand how a framework like “deaths pulled from the future” is not some pandemic-era deviation from the otherwise-ethical norm but business as usual.
I think looking at the ways that governments have historically managed large disabled populations in the past allows us to better understand our present moment. In essence, this was a process of rendering disabled people as economically devalued, which was demonstrated in the changes to traditional charity models that were driven by the rehabilitation movement that began in the 1800’s. This was a movement of medical professionals that tried to use advancements in medical technology (like orthopedic surgery) to ‘cure’ people with work-limiting injuries, or people disabled by industrial accidents or war, and it coincides with a lot of changes in the conditions of labor, war, reproduction, and mechanical reproduction.
As industrialization made work more dangerous and field medicine made advancements that made surviving injuries of war more likely, the need for rehabilitation facilities, which were large residential institutions meant to streamline the care of disabled people — and of course to do that with an eye towards lowering costs. These institutions become important sites of capital in and of themselves in their missions to prepare and repair bodies for work. Ultimately many of the rehabilitationists are the foundation of a lot of our modern legal and medical approaches to disability and key to the way rehabilitationists conceptualized disabled and vulnerable people was through a lens of individual worth = economic productivity.
The rehabilitation movement is a key moment in history that illustrates how disabled life is instrumentalized by capitalism; why disabled life is not the kind of life that’s actively supported or enabled to flourish. It starts from the idea that some people are not meant to be workers because of injury, being born with a disability, or other ways of being a body-mind and that some of those other ways of being can be ‘fixed’ while others cannot be. The movement is about advancements in technology, but it is also about reclaiming disabled people for capitalism, which fuels this enormous expansion we begin to see in the late 19th century of the asylum and hospital school movement in the United States and elsewhere—which leverages disabled populations as valuable for the services they generate, and through the industries supported by their survival needs.
In this context, rehabilitation takes on a range of practices from corrective braces, mobility aids and prosthetics, to talk therapies, work therapies, rest therapies, and exercise programs, to orthopedic intervention in childhood development, surgeries, and vast improvements in medical knowledge and technique.
Rehabilitation amounts to a wide range of corrective and curative measures where disability becomes an individualized problem that requires a fully medicalized intervention to verify, treat, and correct. Most people call this a “medical model of disability” approach and are critical of the ways this medicalization-forward way of understanding disability abstracts the disabled person as not a person but a problem to be fixed, and the process of that fixing becomes a revenue generation stream.
Cure was framed as the ability to work, and rather than being about an absence of symptoms or suffering, or general improvements in quality of life, or happiness, fulfillment, joy, etc. Can they get back to work? They’re cured. If they can’t they still require rehabilitation. So, the idea is basically that disabled people are seen as resource that is not intrinsically fit for society, but who can be made to fit through medical intervention and by becoming a contributing member of society, and in so doing, the care, rehabilitation and treatment of disabled people also becomes a site for the reproduction of medical expertise and surplus profit.
These asylum and state hospital systems were huge catalysts in the development of medical expertise and authority, especially in psychiatry and surgery, fostering changes in the ways that the medical institutions sought to manage and correct bodies. But the asylum system also centralized (and then later decentralized) a lot of the money that was passed through care systems.
As the 20th century continues and post-war austerity policies became the norm, the question became what to do with the people who could not be cured? People who cannot be cured are seen as being in a condition of non-life—a living death in the cultural imaginary. What begins to happen then in the post-war era is the notion of rehabilitating the incurable becomes widely considered a waste of taxpayer money. This is where we start seeing drastic defunding of the institution system, while occupancy continued to rise. Facilities were characterized by low staff ratios, restraints, discipline, abandonment, neglect, violence, and at the same time, it’s not like people living in asylums are doing nothing — they are working, maintaining the facilities to care for other residents, each other, and do other kinds of production-based work (similar to how prisons become sites of labor). These facilities also act as larger nexuses of lab our for the wider community – employing people as nurses, cleaners, doctors, among others. The disabled person is at the center of it all, they are the kernel for all of this production of surplus profit, of expertise, yet their needs are not centered.
I think it’s during this mid-century moment of institutionalization that capitalism commoditizes disability as a space where the health marketplace can mediate people’s survival and attenuate their relationship to work—and that became foundational to the development of the political economy of health. Earlier decisions continue to dictate the ways that we manage disability from the government level today — we’re still having the same fights about how much money to spend for services to take care of people, and whether or not it’s a good use of money to support people who may not ever be workers, or used to be workers but won’t ever be workers again. The way that disability and old age have been framed by the state in our modern era exists as an inverse to the worker in the contemporary conceptualization of the term.
This contributes to the ways that we economically devalue disabled life in the pandemic – and so the idea of deaths pulled from the future are the deaths of people that were not, within the capitalist framework, valuable to society. In other words, deaths pulled from the future are deaths that were always on the state’s accounting books anyways, so the implication is what does it really matter if it came a little sooner than planned?
Throughout capitalism, we have stood up system after system that reinforces the economic valuation of life, which devalues disabled people because of this historic symbolic articulation that disabled = not a worker, and not a worker = invaluable. We force people to consent to this ideology and it becomes a ‘common-sense’ truism that disabled people are expensive, they’re a niche interest, or a kind of identity politics thing, liberal representation, rather than recognizing that disability is on a spectrum of just existing—it touches us all and we are all interdependent regardless of our productivity or abilities. If everybody is on this path of destiny, then there’s nothing we could have done anyways to save people from capitalism’s slow death. And I think that what we’re seeing in the pandemic in particular is that disabled life is being devalued along the same traditional lines that we’ve always devalued disabled life, but it’s been worsened by the fact that the pandemic in particular makes vulnerable life that much more vulnerable. And so, I think relative to that increase in risk, we’re seeing an increase in the disregard for that population, too, that is really responding to this age-old myth that it’s beyond society’s capacity to truly care for and protect the people who need the most care and protection.
SWK: Another thread I want to bring in, which is a running theme I’ve noticed on Death Panel is the inextricability among histories of capitalism, ableism, imperialism, and racism. I really enjoyed the interview you did with Da’Shaun L. Harrison where you both talked about their book In the Belly of the Beast which argues that the politics of anti-fatness is anti-blackness, exemplified by the medicalization of black people’s bodies rendered as an avenue of control [5]. More recently you interviewed Jim Downs about his book Maladies of Empire, which makes the connection between colonial exploitation and medical knowledge structures that still transpire today in epidemiology [6]. You and your host later reflected upon the possibility of epidemiology as a kind of technology in the service of capital.
These conversations made me think of Communication theorist Wendy Hui Kyong Chun’s work on ‘race as technology’, which describes how racist ideology has rendered both enslaved and/or colonized people’s bodies as enduring signifiers – something immutable – for their relationships to capitalist production [7]. In this work, she describes this rendering of immutability as a technology of establishing a standing reserve. So, there’s this huge link between histories of colonial domination, the development of the American healthcare industry and technology.
This considered, how do you integrate this approach to understanding technology in your analysis of the American healthcare system?
BAB: Things like social insurance and social safety nets are often discussed in terms of rights, within a very narrow classical liberal framework. From a Marxist perspective, these things you claim to be rights, which are conditional, I see as technologies that everyone should have access to regardless of income, job, work history, productivity, state, borders, whatever — are you alive, do you need health care, can we give it to you safely, can we make your life better, can we offer comfort for your symptoms? That should be enough. But instead, under the framework of health care as a right, it’s about negotiating the right to health care against the right to profit, and under capitalism the right to profit always wins. Always.
But if we think about health care as a technology not a series of services and produce — and following that health finance is only one component, not the central mechanism even — it becomes easier to think of replacing various parts that aren’t working, e.g. ending the right of private insurance companies to exist in the US. If our technology for delivering health care needs a new finance mechanism in order to provision health care to everyone, then we have a much bigger political horizon for interventions and moving forward towards a more equitable society where people aren’t necessarily only allowed the survival that they as the individual consumer can sort of buy. Under a rights framework we must contest with the ways that many people are excluded from rights, kept from them, not entitled to them. I think we should begin thinking of health care as a technology and capacity to meet people’s needs and less of a consumer-oriented product that we’re used to thinking of it as. When we hear the word technology, we think of durable goods – refrigerators, computers, iPhones, microwaves, whatever – because these are the kinds of things that exist in our popular imaginary to facilitate life, technology is not just consumer goods, apps and software though. Health care and health finance and ‘how we pay for it’ is also a technology that facilitates life.
Reasserting health care as a technology reveals that it is not an ethical or value-oriented decision, or what your politics are, it’s just what is needed for the facilitation of life. This lens also works to depersonalize people’s opposition to provisioning social goods in a way that supports collective survival, and I think works against some of the zero-sum logic that has perpetuated these systems and political economic logics of capitalism. If we think of ‘how do we maximize capacity to ensure survival’ — versus thinking of things as coming from this fundamental position of artificial scarcity, where we are always going to be making these restrictive decisions based on rights — it opens up ways to start critically engaging with the ways we pay for care as not so much being part of a product, but part of the same logistical system of who we provision things to people who need them, and how do we meet people where they’re at.
SWK: What do you think the possibilities are for the re-appropriation of these technologies? Following Michele Friedner in Sensory Futures [8], is there a way to see technology as ambivalent and therefore ripe for recuperation?
BAB: Despite the fact of health care not being done or allocated in a way that makes sense and being done in the way we do it — that makes people miserable — it has still had a tremendous positive impact on my life as a chronically ill person. Even with all of the medical debt I’ve had to take on over the years, I would not be here without it. Did it need to come with all this debt? I don’t think so. So, I’ve had to reconcile my critique with something that has improved my life and that has shown me a lot of in-roads towards reappropriation that I don’t think would have been as readily obvious had I had a different experience with my own medicalization.
My own disabled identity comes from my chronic illness. I have to stay on medication in order to manage my chronic illness, to keep me from becoming sicker, even though those medications themselves also have additionally disabled me. I’ve had to reconcile my politics with the fact that I need and rely upon the state that I critique to support me, I rely on the companies I want to abolish like Roche and Pfizer who make these products like biologics that are so astronomically expensive that my entire life is oriented around affording them. Many patients feel like this is biting the hand that feeds you. But if all I think about every day is how do I afford and continue this treatment, then there’s got to be a better way to make sure that people who need it can get it. But a lot of people who have this kind of lived experience, who are spending so much time on trying to survive, which provides so much intimate knowledge of systems of subjection and oppression and how they could be improved, are not often in a position where they can leverage that expertise or have it taken seriously.
I do think reclamation of health care towards health and disability justice is feasible – there is something to be reclaimed in health, and we can find the shared language and concepts that can be recontextualized. We need to think about appropriating systems, we need to be working multifocally and multimodally all the time, by agitating for immediate survival, like improving current social safety nets, COVID protections , spatial and institutional accessibility, need work despite being obviously captured by neo-liberalism. We have to accept things that are absolutely imperfect, and never let the passage of a law be the end of a fight. Compromises cannot preclude fighting for bigger ideas, we must reject the ‘commonsense’ that the reasonable must preclude the utopian, because for too long disability movements have strived to be included in the liberal establishment and that’s not going to cut it. Disability theory needs to be about how to build a different world and we need to draw inspiration from the strategies that helped liberate people from asylums (not perfectly, obviously), and learn from the mistakes that kept the system largely unchanged with many disabled people still left with few options other than congregant housing. Key here, I think, is to work to knit principles of police and prison abolition movements with disability justice, as highlighted by scholars such as Liat Ben-Moshe. Disabled people need to commit to the project of broad decarceration. Our carceral society, which has been targeting poor people, disabled people, and Indigenous people is at odds with getting people the care we know they need in their homes and communities. I do think that that’s kind of where the future of the disability movement really is.
About the Authors
Beatrice Adler-Bolton (she/they) is a blind/low vision and chronically ill artist, author and activist. She is currently completing an MA in CUNY’s Disability Studies program, co-host of the Death Panel podcast, and co-author of Health Communism: A Surplus Manifesto, which examines the American healthcare system from marxist and disability perspectives. She can be found on twitter @realLandsEnd or their website www.beatriceadlerbolton.com.
Sabrina Ward-Kimola (she/her) is a SSHRC funded PhD student and researcher in Concordia University’s Communication program. She is also a core member of Access-In-The-Making (AIM) Lab, an anti-colonial, anti-ableist, feminist research lab. Working from the positionality of a CODA (Child of a Deaf Adult) her work focuses on questions of appropriation in disability cultures, as well as reorienting historical narratives through a critical disability perspective. She can be found at @sabrinawardk or sbrnwrd@gmail.com.
Bibliography
- Marta Russell, Beyond Ramps: Disability at the End of the Social Contract (Common Courage Press, 1998).
- Beatrice Adler-Bolton and Artie Vierkant. Health Communism: A Surplus Manifesto (Verso, 2022).
- Avram Finkelstein, After Silence: A History of AIDS through Its Images (Oakland, California: University of California Press, 2018).
- Beatrice Adler-Bolton, “Deaths Pulled From the Future,” Substack newsletter, Blind Archive (blog), January 3, 2022, https://blindarchive.substack.com/p/deaths-pulled-from-the-future.
- Da’Shaun L. Harrison, Belly of the Beast: The Politics of Anti-Fatness and Anti-Blackness (Penguin Random House, 2021).
- Jim Downs, Maladies of Empire: How Colonialism, Slavery and War Transformed Medicine (Harvard University Press, 2021).
- Wendy Hui Kyong Chun, “Introduction: Race and/as Technology; or, How to Do Things to Race,” Camera Obscura: Feminism, Culture, and Media Studies 24, no. 1 (2009): 7–35.
- Michele Ilana Friedner, Sensory Futures: Deafness and Cochlear Implant Infrastructures in India (Minneapolis: University of Minnesota, 2022).