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Risa Goluboff, Craig Konnoth and Karen Tani

S6 E7: Medicalizing Civil Rights

Experts increasingly use the language of medicine and disability to address social issues like poverty and racial discrimination. Professors Craig Konnoth of UVA Law and Karen M. Tani of Penn Law discuss how we got here.

Show Notes: Medicalizing Civil Rights

Craig Konnoth

Craig Konnoth is the Martha Lubin Karsh and Bruce A. Karsh Bicentennial Professor of Law at the University of Virginia School of Law. He writes in the areas of health and civil rights, as well as on health data regulation. He is also active in LGBT rights litigation, and has filed briefs in the U.S. Supreme Court and the Tenth Circuit on LGBT rights issues. His publications have appeared or will appear in the Yale Law Journal, the Stanford Law Review, the Hastings Law Journal, the University of Pennsylvania Law Review, the Iowa Law Review, the online companions to the Penn law review and the Washington & Lee Law Review, and as chapters in edited volumes. In 2022, he was named UVA’s John T. Casteen III Faculty Fellow in Ethics, a program that supports integrating ethical analysis and reasoning into courses. In 2021, he was awarded a Greenwall Foundation Fellowship, which is the nation’s foremost fellowship in bioethics for early career scholars.

Konnoth formerly was an associate professor at the University of Colorado, where he ran the Health Law Certificate Program. Prior to Colorado, he was a Sharswood and Rudin Fellow at the University of Pennsylvania Carey Law School and New York University Medical School, where he taught health information law, health law, and LGBT health law and bioethics. Konnoth has also served as a deputy solicitor general with the California Department of Justice, where his docket primarily involved cases before the U.S. Supreme Court, and also before the California Supreme Court and the Ninth Circuit Court of Appeals. 

Karen M. Tani

University of Pennsylvania Carey Law School professor Karen M. Tani is a scholar of U.S. legal history, with broad interests in social welfare law, administrative agencies and the role of rights in the modern American state. She is the Seaman Family University Professor.

Her current research is about the history of disability law in the late 20th century. She teaches Torts, American Legal History, and Law & Inequality, as well as classes in the History Department, where she is jointly appointed.

Tani is the author of “States of Dependency: Welfare, Rights, and American Governance,” 1935-1972 (Cambridge University Press, 2016), which won the 2017 Cromwell Book Prize from the American Society for Legal History. The book sheds new light on the nature of modern American governance by examining legal contests over welfare benefits and administration in the years between the New Deal and the modern welfare rights movement. Her current article project, on “Disability and the Ongoing Federalism Revolution” (with Katie Eyer), is forthcoming in the Yale Law Journal. 

Prior to joining the Penn Carey Law faculty, Tani was a Professor of Law at the University of California, Berkeley. She has also held visiting professor appointments at Columbia Law School and Yale Law School.

Tani is the first graduate of the University of Pennsylvania’s J.D./Ph.D. program in American legal history. Following her law school graduation, she clerked for Judge Guido Calabresi of the U.S. Court of Appeals for the Second Circuit.

Listening to the Show

Transcript

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Risa Goluboff: What happens when we view social issues like poverty, education and racial discrimination as health issues? Can medicalizing civil rights help strengthen them? On this episode of Common Law, two experts will discuss the benefits and possible pitfalls of this approach.

Craig Konnoth: You're not going to get very far by saying, you know, look, I want civil rights because I'm addicted to nicotine, right? But you might get quite far by claiming some other condition.

Karen Tani: Why did they broaden disability-based income support programs even as they restricted or eliminated other welfare state programs?

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Risa Goluboff: Welcome back to Common Law. I'm Risa Goluboff, Dean of UVA Law School. This season, we've been focused on sharing a “free exchange” of ideas in each episode by hosting vigorous discussions among faculty of different views on a given issue. Just like in our weekly faculty workshops with law school, we're putting new ideas under the microscope – just on a podcast. For this episode, which also wraps up our sixth season, we'll be joined by UVA Law Professor Craig Konnoth and University of Pennsylvania law and history Professor Karen Tani. Craig, Karen, thank you so much for joining us today. I'm really glad you're here and, uh, welcome.

Karen Tani: Thank you for having me.

Craig Konnoth: Thank you, Risa.

Risa Goluboff: So to get us started, Craig, maybe you can first tell us a little bit about Karen and then Karen, you can tell us a little bit about Craig.

Craig Konnoth: Absolutely. Karen Tani is the Seaman Family University professor at the University of Pennsylvania, where she also earned her Ph.D. and J.D. She is a legal historian with interests in social welfare law, administrative agencies and the role of rights in the modern American state. Her current research is about the history of disability law in the late 20th century.

Karen Tani: And Craig is the Martha Lubin Karsh and Bruce A. Karsh Bicentennial Professor of Law at UVA. His work focuses on health and civil rights, the regulation of health data and LGBT rights. Before turning to academia, he was deputy solicitor general with the California Department of Justice. And more recently he has served as a Greenwall Foundation Fellow.

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Risa Goluboff: Fabulous. So thank you both. And I can't wait to hear more about how health law and civil rights policy have become intertwined. So, we'll be right back with Craig Konnoth and Karen Tani.

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Risa Goluboff: Let's start with you, Craig. Craig, uh, you wrote a paper titled “Medicalization and the New Civil Rights,” and you published it in the Stanford Law Review in 2020. So what does that phrase mean to you? How are medicalized civil rights different from other civil rights?

Craig Konnoth: I'm thinking about rights and claims individuals and groups make on the law by framing themselves as associated, uh, with some kind of medical status, with a diagnosis, with a medical condition, with experiencing something that has medical consequences. So when people invoke the language of medicine to get rights, I refer to that as medical civil rights. Uh, and I can give a couple of examples if that would be helpful.

Risa Goluboff: That’d be great.

Craig Konnoth: Medical civil rights can be used in multiple ways. You can use it at the level of the individual for them to avoid intervention by the government or to make claims. So, for example, if you want to ask Medicaid to cover certain housing expenses or transportation. That's one way to do it. The other way to do it is to think about it at a more structural level. So, uh, individuals who want to get interventions for the opioid crisis or who want to combat marijuana prohibitions, they use medical frameworks and medical claims, um, saying, for example, that they need marijuana for medical reasons in, in order to get access to what, what it is they need.

Risa Goluboff: Okay.

Craig Konnoth: But more importantly, with medical civil rights, you can actually gain access to benefits. So there's one case where, uh, a student – a group of students, actually – claimed that they were suffering, uh, racism, homophobia and other, uh, issues in school, and they said that that caused psychological trauma. Um, and using various statutes, they argued that the school had to put into place a program to, um, help address the racism and, uh, homophobia they were experiencing. The school had to create a plan that would allow them to have an educational experience without the discrimination.

Risa Goluboff: Got it, ok, and where did the idea of medicalizing civil rights come from?

Craig Konnoth: I think it's sort of evolved over history. I think that America's relationship with medicine has changed over time and medicine itself as a discourse has, uh, evolved and changed. You know, it's always in contestation, but it used to be that we understood, you know, medical conditions roughly in ways that required correction and sometimes punishment and addressing in ways that were sometimes problematic. Over time, I think, there has been this slow shift to understanding medicine as a place where individuals who suffer medical conditions should be taken care of.

Risa Goluboff: Great. So Karen, I'm, curious about how your work relates to that, but before we get to the relationship, I want to just talk about your work first. So, you're a legal historian like me, and you've studied the history of disability law in the late 20th century and before and have uncovered, you know, how precedents in this field have had a surprising effect on federal civil rights guarantees, as well as leading to, you know, an increase in the use of disability, uh, as a path to get government benefits. And so I see the parallels, but I also want to talk about the interaction. So, can you first just talk about your work and the history that you talk about in your own work?

Karen Tani: Thank you for that question. I think Craig's work on medicalization, first of all, I just want to say it's been really important in opening up great conversations among historians and, and legal scholars. I think that where I've been coming from and where the intersection is in my work is I've been very interested in this idea of disability governance or governing through the concept of disability. So when you ask Craig, you know, where did this come from, an answer that you might get if you look more at political history and legal history would just be to think about the explosion of disability-related lawmaking that was happening in the period between roughly 1965 and 2000. So I think complementing Craig's work on the kind of claims-making that was happening on the ground, I've been really interested in why policymakers so readily embraced the concept of disability during the late 20th century. For example, why did they broaden disability-based income support programs at this moment, even as they restricted or eliminated other welfare state programs? Or why did they enact a major disability civil rights law, Section 504 of the Rehabilitation Act of 1973, even before facing meaningful pressure from the disability civil rights movement? Um, so I think part of what I'm interested in that intersects here is this idea of, you know, the concept of disability, I think, is doing some important work for the state. And I've been trying to puzzle through what to make of that and what the consequences are. And I'd be happy to talk more about, uh, some of those consequences as the conversation goes on.

Risa Goluboff: I was just about to say, so why? Why do they do that? Why is the government interested separate and apart from, uh, political pressure or social movement pressure?

Karen Tani: I think it's a fascinating question, which is why I've been spending years thinking about this. I think that on the welfare state side, disability has increasingly functioned as a convenient proxy for deservingness. So, we don't live in a country where we have a universal welfare state where everyone in need gets the money that they need to, to survive. And so we've seen policymakers separate people essentially into categories. So I think what we've seen in recent decades is sort of the rise of the disability category and the decline of categories like, you know, historically it used to be if you were an unmarried woman with a child, you would have been seen as categorically deserving. And we saw the decline of that category as it came to be, uh, sort of, explicitly racialized in the 60s, 70s and 80s. Uh, and at that same time, we've seen the rise of the disability category. So I think disability as a sort of useful distributional device. And then I think on the civil rights side, I think this was an era where policymakers were primed to see analogies to race and racial inclusion, and were really interested in finding ways to signal that equal opportunity was available to all. So I would say there too, disability had a clear appeal. To embrace disability civil rights was to take the moral high ground to advance the march of inclusion and so on. And again, I think there were consequences, but I think that that’s sort of a two-pronged understanding of what the appeal was at this moment.

Craig Konnoth: You know, I love Karen's work because, you know, Karen really goes in and looks at the history in a way that, you know, us non-historians aren't as easily able to do. You know, I, I sometimes am allowed to sit with the historians...

Risa Goluboff: Oh, we embrace you, Craig. We embrace you. I didn't mean to say before I like Karen more. You're my colleague. You do fabulous work. Um, you know, it's just, I don't get that many historians on the podcast.

Craig Konnoth: No, I know. I know. I'm excited.

Risa Goluboff: But you're a part of the historian crew.

Craig Konnoth: Thank you. I'm now a cool kid.

[laughing]

Craig Konnoth: Uh, but, but, but basically, what Karen was saying actually sort of makes me think of her colleague Allison Hoffman's work. Allison talking about the Affordable Care Act traces three different themes, three different sets of justifications that underlie the Affordable Care Act. And I'll talk about those in a second, uh, because I have my own class on them. Because if you go back and look at, uh, legislation over the course of history, since, you know, we can talk about veterans’ benefits, right, and, and onwards – Civil War veterans’ benefits, I should clarify — and onwards. Um, but the kinds of discourse being used, I, I would say sort of fall into three categories. The first is the classical approach to thinking about sickness, right? There's, there's a sort of moralistic understanding where, um, if you're sick, uh, you've got to be punished in certain ways. And I think that that you see reflected through the course of legislation that touches on medical diagnoses. You see this back in the late 19th century. You see this in the Americans with Disabilities Act. You see this in the Affordable Care Act, where certain conditions are singled out as being morally disfavored.

I think the second is the sort of efficiency-managerial approach where we want to get people in the workforce. Again, I think the ADA is a perfect example of this. You know, Karen's written about this. And I think the Affordable Care Act is also an example of this, where we see this justification of wanting, uh, people to be well, so that they can work, so that they can be productive.

Then I think the third — and the thread, I think my particular paper that you mentioned earlier is focused on — is this idea that, you know, we want to help individuals that are, you know, down on their luck, that are vulnerable. Um, and I think that that is also a powerful narrative. And I think you see these narratives sort of coming together and interacting with other broad narratives that aren't necessarily related to medicine per se, um, so, narratives of fiscal efficiency and the like. But when we talk about how lawmakers, how policy actors, how stakeholders perceive medical conditions and disabilities, I, I see these three threads sort of, um, sort of interacting in, in interesting and useful ways.

Risa Goluboff: That’s so interesting! Karen, you co-hosted a great symposium at UPenn a couple of years ago, in which experts talked about a lot of these issues. It was called the “Disability Frame,” and that's a term you wrote about in the foreword to the event. Can you say more about what that means?

Karen Tani: Yeah. And at first, again, I think I want to compliment Craig for really helping to crack open a broader field. So what Craig refers to as medicalized civil rights, to a bunch of disability law scholars, which is a, is a field that I've gotten to know in recent years, they would see that phenomenon more in disability terms. So again, what he would call medicalization, they might say, people claiming disability for various purposes, sort of hitching their interest on to, say, a disability civil rights law or a disability-based income support program. And so the concept of the disability frame is one that my co-author, Jasmine Harris, and I surfaced to kind of draw together this type of claims-making. And again, I would say it's very parallel to what Craig discusses in his Stanford Law Review piece. And I think that what we might have accomplished by bringing people together in a symposium issue to talk about the disability frame is to add some additional, both historical and contemporary examples of people reaching for that disability frame. So for example, authors in the symposium talk about, uh, the use of disability framing in the attempt to, uh, remedy environmental injustice that was disparately impacting racialized communities. They refer to the use of disability law in the incarceration context to try to secure better prison conditions. So examples from, I think, diverse contexts. And also, um, the symposium has really tried to puzzle through normatively, what do we think about this? Because I think everyone would agree with Craig that descriptively something is going on here, whether you call it a medical framing or a disability framing, people are attracted to this, right, I think for various reasons. And then there's a separate conversation of what do we think about this?

Craig Konnoth: I love the paper, um, and I've not really had a chance to talk with, uh, Karen and Jasmine about this because, you know, of COVID and various other things. So, on my end, I would say that I see the differences as being that the law, when it comes to disability, doesn't fully track medicine. So it says — or it seems to say, um, you know, sometimes problematically — that you need certain diagnoses. But on top of that, you need to satisfy a range of conditions as to whether your condition or your “impairment” — as the actual term is — affects your ability in your daily life, right? And there are various formulations of that that have been interpreted narrowly and broadly by courts. And I also look at other statutes that aren't classically thought about as disability statutes. So let's say Medicaid. Medicaid started paying for your housing expenses, excluding rent and transport, right? And so you don't traditionally have to satisfy disability definitions to gain these expenses from Medicaid. So, so on one hand, I sort of see medical civil rights as reaching into other areas. But I also suspect — and this is where I'm going to turn to Karen — I wonder whether, um, there are contexts in which the disability frame can be deployed without thinking about medicine or diagnoses at all. Because I know that one trend in the disability movement has been to say, look, you know, we shouldn't rely on doctors and experts. And that's a theme of my paper as well, that sort of celebrates this move in medicine away from doctors and experts. But there is this trend in disability law that says we don't need to rely on medical discourse at all to define what a disability is. So I wonder whether the disability frame extends in the other direction beyond medical civil rights, just as medical civil rights extends in the medical direction beyond the disability frame.

Karen Tani: I think that's a great intervention to just point out that I think when we say the disability frame, we're probably referring to a subset of the broader phenomenon that you're getting at in your medicalization of civil rights work. I think the question that you raised is complicated about whether there's a way to reap the benefits of the disability frame without necessarily getting attached to a medical discourse, and here I think the problem might be some of the key statutes, I think, especially if people are reaching for, say, disability-based income support. So, an example that Craig and I both have written about would be, say, people with HIV/ AIDS, at the height of the epidemic in the 1980s and the early ’90s, really pushing that, again, disability-based program to expand to meet their needs, right? To get access to that program, they're necessarily working with a law that is shot through with medical gatekeeping. And so there it's a question whether there's a kind of different framework available. I think that for disability civil rights laws, there's more room. And Craig, maybe that's what you were getting at is that laws like the ADA, they do have a component that you could say is getting at what people in disability law would say is more of, like, a social model of disability, which is interested in kind of how society combines with a person's impairments to affect whether their conditions are, kind of, functionally disabling or not. Uh, what do you think, Craig?

Craig Konnoth: I've puzzled over this, right? Because I, you know, I think that some folks, um, sort of looked at my paper and said, look, you know, we're troubled by this because you're sort of connecting the language of medicine to disability and you're, you know, maybe trying to promote medical gatekeeping. And I, you know, very much said, you know, look, I'm, I’m, I'm being descriptive and normatively, I'm actually trying to take medical experts or celebrating the departure of medical experts from the space, even when we talk about, you know, health care settings. So, I talk a lot about social determinants of health that look at how social factors, affect, um, health outcomes. So income, housing. You know, whether you've got a place to live, uh, makes a big difference as to what the outcome will be if you've got various kinds of conditions, you know, whether it be trauma that breaks an arm, or whether you've got a chronic condition like diabetes, you need a place to live to take care of these things. Um, so I celebrate the fact that other professions are being brought in to recognize that harm goes beyond what, you know, doctors and other traditional medical professionals can solve. But the other thing is, when I talk about the interaction of medicine and disability, and the gatekeeping of medical discourse for disability, I'm being descriptive. You know, for better or for worse, that's what courts have done. That's what Congress seems to want when it comes to the ADA. And so, um, the question I've always had in my mind, is is there a way, you know, forget about the ADA, forget about Section 504, forget about the laws we have in the books. They aren't perfect. Is there a way to conceptualize these laws that doesn't rely, um, upon medical diagnoses. Right? Because I think in some ways, medical diagnoses offer us a common frame that all of us can share a common language, if you like, right, a standardized one. But is there a way to create a different language, uh, for disability that doesn't rely on medicine? And you know, and I, I don't want to overstep and also I'm just not as expert as other people are in this area, so I don't, uh, you know, I don't presume to, to add much to that, but I've always been curious as to whether there is that possibility.

Karen Tani: I think I could maybe add one more historical, contextual piece to the conversation. And Craig, I know you're aware of this history, but I think the challenge here is a deep history of suspicion against people who claim disability, a concern that, uh, you know, in our capitalist system, there's a stereotype that people might prefer not to work, and so might try to find some way to get out of work by feigning disability, right? So it's getting at this old narrative of disability fraud that Doron Dorfman and others have written about. And so I think maybe to add context to what you're saying and why people have found it difficult to imagine getting outside the medical gatekeeping is because the concern is, could we find a way to, say, bring in the perspectives of disabled people themselves that policymakers and people in power would actually agree to, or would those people be so caught up by the narrative of disability fraud that they couldn't imagine some way of having a kind of more democratic understanding of what disability means. I think that would be kind of the question mark that I see coming from, more from the folks who do disability law and disability studies.

Risa Goluboff: So am I right to think that what you're saying is that medical expertise both serves as gatekeeper but also as legitimator, right? And the medical expertise vouches for, in a way that maybe is, is demeaning or dehumanizing or, right, like maybe would be a better world if that wasn't necessary, but because we live in a world that seems to say it's necessary in order to avail oneself of the benefits that these gatekeepers are also enablers. Is that what you're saying?

Karen Tani: Yeah, that's exactly what I'm saying. And I think you could see glimpses of that. Every few years, there will be exposés and major newspapers about disability fraud. And sometimes the critique is these medical gatekeepers aren't doing their job. The presumption is that these are the people that are supposed to police the boundary between someone who is truly disabled, quote unquote, and someone who is insufficiently disabled. And our system is a sort of all or nothing, right? You either are or you aren't, unlike some other countries. So it's a kind of high-stakes line. And so there has been persistent concern that people aren't taking their gatekeeping duties sufficiently seriously, and there's been, I think, an inability to imagine that you could involve non-experts, non-medical-credentialed medical experts somehow in that determination. I mean, Craig, is that your sense?

Craig Konnoth: Yeah, absolutely. I think this also goes to the broader question of, you know, what does medical civil rights or what, what does the disability frame get us, right? Is it actually as powerful as some people think it is? And I, you know, sort of punt on the question a little bit by saying, look, I think it's important to recognize that it's sometimes very powerful. Sometimes it's less powerful, right? Depends on the disability at issue, right? So, you're not going to get very far by saying, you know, look, I want civil rights because I'm addicted to nicotine, right? Um, but you might get, you know, quite far by claiming some other condition. And I think that, there is the sense of, you know, gatekeeping of claims of legitimacy, and then also sort of, you know, negative aspects of this,  where I think the law requires you to satisfy a range of conditions to do various things, you know, in order to claim benefits. You know, subject yourself to a medical exam, disclose all your data, participate in all kinds of surveillance that's ongoing in order to gain benefits. And so I think the question then for me becomes comparative, right?

Something that can happen when you look at any aspect of civil rights is that, you know, you sort of look at it and you say, look, these are the problems. And I'm very sympathetic to it because, you know, I came into the law to be a civil rights lawyer myself. And then you sort of realize, well, what are the other strategies available to us, right? And what are the pros and cons? And so, as academics, we can sort of sit back and, you know, think deeply about the problems, and uh, but I also think that sometimes it's important to look at what's out there, right? And I think that in some ways, we are, um, at a time of history where I think we're fighting a rear-guard action. And sort of trying to figure out what works and what doesn't work is a hard job. And I think there's gatekeeping in medicine. I think there's gatekeeping when you want to make claims for using race discrimination, using sex discrimination, and so on and so forth. And I think that this is just, uh, an interesting area where you've you've got to try and figure out, um, how to balance the real benefits and costs.

Karen Tani: Yeah, I'll add to that by saying something that I like about your work, Craig, and that I also like about the work of people that have critiqued your work, is I think that you're both parsing sort of short-term benefits and you're also thinking about longer-term consequences. And I think that everyone concedes that people need to survive in the short term and they deserve recognition and protection from the government. And so sometimes these framings that we're talking about can be, you know, if you're a lawyer advising your client, you might say this is the best route to get what you need in this particular moment. And then I think as scholars, we can also say there are some longer-term consequences that we should keep our eye on. So, for example, my colleague, Allison Hoffman — Craig, I think you referenced something about this earlier when you mentioned the difference between a kind of individualized medical remedy versus when you were talking about the social determinants of health. I think you were talking about kind of structural solutions to these problems. So, I think Allison Hoffman had raised concerns about, is there a way that we could help someone deal with an immediate health challenge or need while also not closing off the possibility of addressing a harm in a more structural way, which could potentially have benefits for a group. What I like about, say, the work of Rabia Belt and Doron Dorfman, I think they have pointed out that even in the short term, there could also be some tradeoffs, so I think they have said, ok, maybe the medical or the disability framing gets you income support in a particular moment when you need it, but perhaps the price could be now because you have been labeled in a particular way, this has implications for immigration status or child custody, or maybe a person becomes more vulnerable to sterilization or institutionalization. So I think, again, what I think I like about your work in the conversation that you've opened up is, is it does allow us to have a rich conversation about pros and cons both in the short term and in the longer term.

Risa Goluboff: That raises a question for me for both of you. Who is your audience? And if your audience is lawyers, should lawyers do anything different after they read each of your work? I mean, should they be making those short-term, long-term tradeoffs differently? Should they be embracing a disability frame in other contexts? Should they be medicalizing civil rights, you know? Is that part of your audience? And then, you know, how do you think about what they should be doing on the basis of the work that you've done?

Karen Tani: My audience would be other people who are interested in political history and governance, really trying to get those people to say, hold on, something really big is happening here, which we haven't really recognized or thought through. So naming that, I think is one part of what I'm up to. And then the other part was just trying to get a sense of what have been the consequences of that. And, and there, I mean, kind of less these individual level consequences of do they claim the disability frame or the medical frame or not, and more in some sense about broader consequences for governance.

Risa Goluboff: Craig?

Craig Konnoth: My audience, I think, consists of lawyers, but I think also of academics. I think in some ways, primarily academics, um, because I think one of my concerns is that there is insufficient attention to, I think, three things. The first is looking at the arc of medical civil rights over the course of history. You can look at specific programs and you can identify how those programs have never quite lived up to their promise and how there are various ways in which judges, in which policymakers, in which administrative agencies have used to evade the full promise that those rights were meant to fulfill.

The second is a comparative move to not just think about the limitations of the medical civil rights model, but thinking about the limitations of other models as well. Um, and I think it's important to do that because it may very well be the case that, you know, you are making yourself vulnerable in various ways by claiming medical civil rights, but sometimes you aren't, right? I mean, if you're on Medicaid and if you claim that you need various forms of housing assistance, for example, it's hard to get it. It's problematic. But, if you're already on Medicaid, the sort of long-term benefits are limited. So yes, sometimes the harms for a specific individual can be quite significant, right? But if you aren't an immigrant like I am, if you aren't involved in a child custody battle, it actually may make sense for individuals to, to make these claims, as opposed to a set of other claims.

And I think the third is to identify, so, you know, Rabia, Doron, and Allison wrote responses to my piece, and I wrote a reply. And my reply was entitled “Medical Civil Rights as a Site of Activism.” I don't think we're there yet, and we may never get there. And I think that that's true of all civil rights movements. But I think the goal is to get people active and on the ground and to see this as a site of activism, as a place where benefits can be sought. One of the concerns I had, uh, coming from the LGBT rights movement, where again medicine is viewed with a high degree of suspicion, is that by looking at the negatives and focusing on the negatives and not adopting a sort of long-term or wholesale or comparative perspective, you might end up dismissing medicine and you might end up giving it over, uh, to individuals who can use medicine in very problematic and punitive ways. And I want to see medicine as a space where we do have activism and movements to seek justice and rights.

Risa Goluboff: What I hear you saying, both of you, is causation goes in lots of different directions, right? So, I think about in my own work how different rights claimants are often piggybacking on other kinds of rights claimants. And I think you're both telling stories about different kinds of piggybacking. But then in addition, when you piggyback, you also, this is not a great metaphor, but I'll continue it, but when you piggyback, you're on someone else's back. So you're taking, you know, the, the burdens they face too, as well as the opportunities along with you. And, and, you know, we've talked a little bit here and there about race, but I'm curious, you know, how has medical discourse shaped the way racial minorities are seen? How has the fact that this has often, you know, as you said earlier on, Karen, disability rights really grew up in the shadow of racial civil rights. So how do you each see where the causation is mostly going or how you would predominantly describe the role that race is playing in these discourses?

Karen Tani: So I think that in my work, one of the most interesting phenomenon that I've seen is the way that decisions or conversations that happen in the disability civil rights context, sort of end up spilling over into the race and sex civil rights context. And that has to do with the way in our system that civil rights laws are patterned after each other, as you said. So an example of this would be, you have Title VI of the 1964 Civil Rights Act. As your colleague Joy Milligan would say, this is a “spending clause civil right.” It says that if you are going to accept federal government money, you may not discriminate on the basis of X, right? And in Title VI, it's race, national origin, et cetera. So Title IX of the Education Amendments of 1972, that's doing something very similar for sex, albeit confined to the educational setting. And then you get Section 504, this is the disability civil rights law that I mentioned earlier, which is the spending clause civil rights equivalent in the disability context. And what you see doctrinally is that federal courts basically say, if we say something about one of these statutes, it applies to the other ones as well. And what has happened in the case law is the court will sometimes say something in a disability case. Say, for example, in recent cases, something about the availability or often unavailability of a particular remedy, in say again, a section 504 case that then spills over into the sex and the race context. So I don't know if that's a direct answer to your question about causation, but I do think it's speaking to a way in which these different civil rights laws are really entangled and the consequences of adding disability to the mix, and in my work, I, I, I talk about how that, uh, that kind of infects civil rights more generally.

Craig Konnoth: I look at the malleability of medicine to think about how medicine has interacted with race and other categories over time. When you look at historians who have talked about what I call minority medicalization, they tend to sort of identify certain threads in history and, and point to, I think, the very real racism or sexism that existed at a certain point in time that enabled, um, you know, medicine to, to treat and create fictions regarding minorities in various ways. I think eugenics, for example, is the classic example of this. But I think that, uh, if you sort of go back and you look at, the birth of modern medicine, which isn't that long ago, it's the late 19th century, it's changed over time. It used to be that, you know, when you first see modern medicine come as a powerful new discourse with institutions that were able to further its goals, you see some of its claims being used to then, uh, categorize and identify, uh, women and Black people in a certain way, uh, using physical measurements, using, you know, craniometric claims and, you know, various diagnoses and identifiers. And you have this massive move towards psychiatry, and specifically psychoanalytic theory, as you get to the 1930s, again, making claims about, you know, Black people and women, right? And then from the 1970s and 80s onwards, you have claims that are rooted in genetics and, uh, neurobiology that come to the forefront. Um, and I think that where I see hope is that starting in the 1990s, you see the shift to thinking about how social harms shape individuals and shape health outcomes. And I think that where I want to see things move is to instead of looking at biological identifiers for thinking about how to medically define what it is to be Black or another racial minority or to be a woman, to think about how social circumstances shape medical outcomes that then determine what it is to be a minority right? And I think we're beginning to see that language come to fruition only now.

Risa Goluboff: And by that you mean social determinants of health.

Craig Konnoth: Yeah, social determinants.

Risa Goluboff: And can you just say a little bit more what are those? What does that mean? How does that interact with the work that you both are doing?

Craig Konnoth: Yeah, absolutely. So, um, social determinants of health is basically this way of thinking about health outcomes that says, look, you know, it could be the case that your health outcomes are determined by your genes. And, you know, if your parents and your grandparents have had cancer or diabetes, so will you. But it also is determined by your life outcomes, whether you live in an area which is a food desert, right, where you may or may not have access to food. Now, in the past, we've seen something problematic, which is, you know, instead of thinking about where people live, we talk in terms of habits, right, as if casually, oh, well, you know, you know, I go to the grocery store, there's lettuce there, and beef there, and I pick the beef. But that's often not the case, and I think what we're increasingly seeing, there's a, there's a new phase in thinking about social determinants, where we realize that there are so many aspects of individuals' lives that are out of their control, right? The income they have, the education they receive, where they live, the amount they've got to work. And all of that comes together to determine health outcomes. And I think we're beginning to see that realization in the Affordable Care Act. I mean, honestly, the Affordable Care Act was early in the days of this kind of thinking. But you see this move to creating, uh, health institutions that don't just, um, seek to, you know, provide biological assistance, right? So if you have cardiac arrest, you get the appropriate treatment, but also, to think about, you know, where do you live and what your income is and what the environment is around you, right? And I think that that is the move we're increasingly seeing.

Risa Goluboff: Karen, do you have anything to add on that?

Karen Tani: I think I don't want to end on a pessimistic note, but I might just say, I think a big trend in American law is a sort of turn away from social responsibility and a robust understanding of the collective good. If you were to look at the welfare state, for example, I do still think we're living in the era of personal responsibility and the individualization of risk. You know, there's constantly a push to think about people's challenges or difficulties in a very individualized register or in the, at the family level. That's sort of as collective as many policymakers seem to want to get. So I think it's maybe a cautionary note about, like, is that the way that the law more generally is moving, which is – I don't think we should abandon a more socialized vision of what American law could be and a, and a broader understanding, I think, of what you're suggesting are kind of structural forces that would determine people's ability to thrive and survive, but I do think we should, we should recognize some of the indicators that are pointing the other way.

Craig Konnoth: You know, I don't think that Karen, you ended on a pessimistic note, right? I think that it is a note that invites us to recognize that there are limits to this, right? And if we aren't aware of these limits, then we aren't going to know what to fight. And I think that part of the job is not just to, uh, do a cost-benefit analysis and to think about — our own cost benefit analysis — and think about, you know, what it is we can gain, but also think about, from the perspective of the longer term, how can we deal with these limitations? How can we get access to these rights, while at the same time, you know, removing the harmful and, frankly, sometimes cruel conditions that are attached to them. And I think that that, you know, can be, a sort of map — an atlas — for seeking rights in the longer term.

Karen Tani: I think one of the signs of successful scholarship is that it gets a lot of people who want to talk about the idea and move the conversation forward. And Craig, that's absolutely how I think about your work. And as to, I think, the intersection, which is, I think, very healthy and appropriate with scholars coming more from the disability law and this disability community, I think they're helping to broaden the conversation to the concerns of people who have themselves felt what it is to be a medicalized subject or somebody who has been labeled disabled or has claimed that label for themselves. So again, I think the fact that you're spurring conversation and widening the conversation is all to the good.

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Risa Goluboff: This has been just great. Thank you both so much for joining us today.

Karen Tani: Definitely. Well, and thank you again for this opportunity to be in conversation. This was really fun.

Craig Konnoth: Thank you, Risa.

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Risa Goluboff: That wraps up this episode of Common Law and our season of free exchanges. If you want to find out more about Craig Konnoth and Karen Tani and their work, visit our website, Common Law Podcast dot com. As always on the site, you'll find all of our previous episodes and more. I'm Risa Goluboff. Thank you so much for listening.

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Credits: Do you enjoy Common Law? If so, please leave us a review on Apple Podcasts, Stitcher, or wherever you listen to the show. That helps other listeners find us. Common Law is a production of the University of Virginia School of Law and is produced by Emily Richardson-Lorente and Mary Wood.