An HIV-positive diagnosis can thankfully now be managed with antiretroviral drugs that keep the viral load nearly undetectable. However, the widespread fear and panic that accompanied the AIDS crisis in the 1980s created rampant panic and discrimination against HIV-positive people, especially gay men. And unfortunately, that discrimination still exists. Our guest today, Scott Schoettes, is an attorney and advocate for HIV-positive individuals, and he is also a gay man living with HIV.
Scott's undergraduate studies led to a career in musical theater, including a national tour of “West Side Story.” But as he considered his second act in life, the death of Matthew Shepard inspired his legal journey. Since then, Scott has advocated for HIV-positive individuals – especially those in the U.S. military — as Lambda Legal’s HIV project director, served as a member of the President’s Advisory Council on HIV-AIDS, and continues his work in private practice.
Listen as this sticky lawyer describes the legal and legislative battles that have resulted in restoring rights to the HIV/AIDS community.
Guest Insights
Links From the Episode
02:58 - How the ADA and the success of antiretroviral therapy changed the face of HIV and AIDS.
06:12 - Problematic judicial interpretations around the ADA’s definitions of disability.
12:14 - Scott’s work with foreign service officers and military members with HIV.
17:33 - Making a case to the military that HIV+ service members could serve.
22:19 - The delicacy of privacy for clients with HIV cases.
30:14 - An actor before pursuing law.
32:17 - Matthew Shepherd’s death helped propel Scott to a legal career.
34:43 - His career path after law school.
38:32 - Scott’s role on the Presidential Advisory Council on HIV-AIDS.
43:49 - Current cases and focus.
John Reed [00:00:00] I vividly remember the onset of the AIDS crisis in the 1980s. While there's a lot to unpack there, let's just say that although there was compassion and concern for those who were diagnosed, there was also fear aimed at the gay community. Discrimination and contempt were rampant, despite the harsh reality that an AIDS diagnosis was essentially a death sentence in many cases.
[00:00:27] AIDS and HIV epidemiology evolved, but lingering biases remained even as famous figures like Magic Johnson and others proved to society that HIV and AIDS was not a gay disease or a needle-sharing junkies’ disease.
[00:00:44] Despite years of public education, initial and expanded legal protections and progress in LGBT rights and acceptance, HIV discrimination continues at both the individual and institutional levels. According to recent statistics, an estimated 1.2 million Americans live with HIV and some 36,000 are diagnosed each year. Sixty-seven percent of carriers are men, but Black and Hispanic people account for 69% of new HIV diagnoses, creating yet another layer of discrimination toward these communities.
[00:01:18] My guest today is Scott Schoettes, a lawyer who advocates for HIV-positive individuals and who himself lives with HIV. Scott is the former director of the HIV Project at Lambda Legal, a national nonprofit that protects the rights of LGBT people, and he served on the Presidential Advisory Council on AIDS-HIV during the Obama and Trump administrations.
[00:01:40] Scott launched his own firm in 2021, where he continues his advocacy, including a particular niche representing military service people and government employees. While we'll talk about his important work in the area of HIV rights and protections, there is much more to Scott that makes him a sticky lawyer.
[00:01:59] Hey, Scott. Welcome to the podcast.
Scott Schoettes [00:02:00] Hi there. Thank you.
John Reed [00:02:03] We're happy to have you. But first, let me ask you, tell us about your HIV status. What's your condition and how are you feeling?
Scott Schoettes [00:02:09] Oh, you know, I feel great. It's something I hardly even think about anymore, really. The HIV medications today are pretty dialed in, and you have very few side effects from taking the medications. And basically, if you take the medication every day, your body's normal. Its immune system is functioning normally.
[00:02:30] So I don't think about it much except you have to have access to your medication. And that's an important thing that I'm lucky enough that I have good health insurance and always have that access to HIV medications. But it's something that affects many people because they don't have that ready access to medications.
John Reed [00:02:52] Well, and that's an important part of your work, and I'm glad to hear about that for you.
[00:02:56] Let's kind of transition here a little bit. In a nutshell, what is the state of the law protecting HIV-positive individuals today in employment and access to benefits, et cetera?
Scott Schoettes [00:03:08] So, the good news is that in 1990, the Americans with Disabilities Act was passed, and that is a law that prevents discrimination against people living with a disability. So that provides protections for people in employment and access to public accommodations, hotels, services, things like that, as well as with respect to some government action.
[00:03:33] And on the disability piece, I'll say, so when the law was passed, HIV was a very different thing, and it really was a disabling condition for many people and a terminal diagnosis. In 1990, things were pretty bleak in terms of how things were looking for people living with HIV. But in 1996, antiretroviral therapy came online and basically just transformed the landscape for people living with HIV. Now at that time, the medications were not as good as they are now. There've been many refinements since that time, but they did transform people's lives. And basically, once you're on the medications, and your viral load moves down to undetectable, you have a normally functioning immune system.
[00:04:25] So, that really made a huge difference.
John Reed [00:04:27] And that's 1990. That's the ADA and we're all familiar with that. How has that law, as well as the interpretation of that law, evolved? There are still people that are subject to discrimination and mistreatment. Has the application of that law gotten better and more pervasive?
Scott Schoettes [00:04:45] So, yes and no. So, the law has modified. First of all, it underwent a transformation for people living with HIV because HIV changed, and for a while we were having trouble qualifying people with HIV as people living with a disability. The way the law was written, you had to be a physical impairment to a major bodily function. And once people were on the medications, they no longer really had a physical impairment of a major bodily function.
[00:05:17] In 2010, the law was modified to ensure that everyone still understood that it was intended to cover something like HIV. And basically, they said, “Hey, immune function is a major bodily function, and we're going to look at the state of a person's health before prophylactic measures or ameliorative measures.”
So basically, you get to look at the person living with HIV as if they weren't on medication. And say their immune function is substantially impaired here.
John Reed [00:05:52] From a regulatory statutory standpoint, you've talked about that evolution. Yet it always comes down to the courts to interpret that, particularly when disagreements and disputes make their way to the court system. How has judicial interpretation evolved around the statutes and regulations?
Scott Schoettes [00:06:12] The judicial interpretation actually is what got us in trouble. As HIV became more manageable as a condition and not life-threatening for people with medication, it was the court's interpretations of the law that created the problem that then was rectified by an actual amendment to the law.
[00:06:31] So that was statutory, not regulatory. And, we had to do that to fix what was happening. The other problem is nowadays, some of the bad decisional law is still on the books. And so, people will look to that old decisional law about HIV. And in particular, there's something called the direct threat defense written into the ADA that says if a person with a disability in this job, in this role, receiving these benefits would present a direct threat to the health or safety of others or themselves what's kind of the judicial add-on.
[00:07:12] But, if they presented a direct threat, then you didn't have to hire them, or you didn't have to provide them with the benefit. And so, it's the way that that has been interpreted, that was really problematic. And that's been problematic since the beginning because the way the ADA has been interpreted more broadly is that, well, it must be a significant risk to the health or safety of others.
[00:07:39] But when it came to HIV, the courts had decided, or kind of collectively interpreted the law to say, well, yeah, it might be a really, really, really low risk that this person's going to transmit HIV in this job. But the consequences of HIV are so horrible that we consider that risk a significant risk, even if it's a very, very, very, very low risk.
[00:08:06] So that presented a real problem for us as attorneys because it's really hard to prove that there's zero risk.
[00:08:16] So then, the courts would say, well, if there's any risk, the harm is so great that we're going to say that's a significant risk and we're going to basically excuse employers. We're going to excuse public entities, public accommodations in those situations.
[00:08:32] Two things that we did, we fought back on that idea that there had to be zero risk, but we also, lucky for us, HIV changed. And so, while an HIV diagnosis is still a very serious thing and means a lifetime of, at this point a lifetime of treatment, it's not the deadly disease that it once was for people with access.
John Reed [00:08:57] I would think that that deadly threat exception was also used as pretext for discrimination; let's just call it what it was. That, well, you know, if it's such a high risk, you know what the underlying pretext was, you didn't have to get to it. You could just say, well, it's a serious threat. It's a serious risk.
Scott Schoettes [00:09:15] That's right. And employers, for the most part, and others were really acting on their own fears. I mean, I'm sure sometimes it was a substitute for say, sexual orientation discrimination. Right? But for the most part, I think they really were scared and concerned, and that that's what was behind it. They really believed there was a risk and they really believed that there was nothing worse than getting HIV. So. We've managed to massage that thinking over time. That's what's finally getting us past some of those tougher situations.
[00:09:57] I'll give you an example, both of something that has gotten better, but then the way that it's a problem. Healthcare workers. There's a bad decision in the Fourth Circuit that talks about someone who wants to be a doctor and wants to go to medical school, and basically, the school wouldn't let him enroll because he was living with HIV.
[00:10:18] And at that time, and I forget what year this case is, but sometime in the early nineties, we had the ADA, but that kind of didn't help us because they said, well, no, he's going to be a doctor. And so, if he's inside somebody's body and he cuts himself and then he bleeds inside, blah, blah, blah, that's a threat. It's unclear how much of a threat that was even at the time. But it was enough that people felt like, no, we can't take that risk. Now what we know is if that doctor's in treatment, and they have an undetectable viral load, whatever risk there was is dramatically reduced. Probably brings it close to zero. And in fact, the guidelines that were put out by OSHA about medical healthcare workers now reflect that new reality. It's only doctors working in very specific jobs. They have to be a thoracic surgeon, basically, before the HIV is going to be an issue. And even then, if they've got in treatment, which a doctor's going to likely have access to treatment, then they can still do their job and they might be monitored a little bit more. But that's an example of something that changed for the better. And we've changed how we handle it in a regulatory way, but that bad decision in the Fourth Circuit is still there.
[00:11:45] And even though the facts don't support it anymore, we have cases in the Fourth Circuit, on behalf of military members and they cite that case to us for why not only people living with HIV shouldn't be a service member, but also why they shouldn't get equal protection, enhanced scrutiny in terms of equal protection because that case also declined to apply heightened scrutiny to people living with HIV.
John Reed [00:12:14] I mentioned this work that you do on behalf of U.S. military members that are facing HIV discrimination and denial of benefits. Tell us about how that work developed. And, as always, as I tell every guest, I, want to protect confidentiality, but maybe you can share details of some of the cases that you've handled without revealing identities or identifying details.
Scott Schoettes [00:12:36] And in that regard, I'll say, we were very fortunate, and we've been very fortunate, at Lambda Legal to have plaintiffs who are willing to step forward and share their identities and be kind of a public face. So, I can even use names in some of these instances.
[00:12:51] When I first came to Lambda, I was put on a case. It was my very first case. It was already going. And it was on behalf of a gentleman who wanted to be a foreign service officer, wanted to serve in the diplomatic Corps, and he was denied the opportunity to even attend training, the school, because he was living with HIV.
[00:13:14] And at that time, the reason given was that you have to be able to send a foreign service officer anywhere across the globe. And in some places, you could have ready access to good HIV treatment, but in other places it would be more difficult.
[00:13:33] And so they claimed because this person would not be worldwide-deployable as a foreign service officer that they could legally deny him this job. We won that case although it was in a settlement, so there wasn't any decisional law that we made, but we did get the State Department to start taking people living with HIV as foreign service officers.
[00:13:54] And then that kind of branched out and had an effect on Peace Corps employees as well. But at that time, I knew when that case was happening that the next big one that we needed to tackle would be on behalf of service members. In a very similar situation, they need to be able to deploy worldwide.
[00:14:14] And they had the additional thing of the fact that their job actually presents a risk of being injured, bleeding, et cetera, that foreign service workers, you don't worry about that so much. At that time, it wasn't a case we could have brought and won. But as the years rolled on and HIV moved forward, and now what we know is that if someone is on the meds and has an undetectable viral load, that it's been proven that they can't transmit the disease sexually.
[00:14:46] And that took a while to figure out and for them to do studies on. And it's a good thing. It is something that they could do studies on with what we call sero-different or serodiscordant couples. But it's really well established now, and the CDC has come out and endorsed it, et cetera. So, when that was happening, that's when I thought, ah, maybe we can take on the military over this idea, which was never really founded in science that someone with HIV serving in the military if they got injured on the battlefield, that they were going to, you know, transmit HIV to other service members who might also be bleeding. It was a theoretical possibility that that could happen. Like it kind of makes sense as a theory that it's possible, but there had never been a documented case of that happening anywhere or in similar situations.
[00:15:38] But still they had this idea and in addition what we learned as we brought this case on behalf of someone who had served in the military for years, had done two tours of duty in the Middle East, had come under live fire, had an army commendation medal, and went to law school on the military's dime. And then on one of his tours of duty, he became HIV-positive, or he tested positive after he came back from a tour of duty. And when he applied to be an advocate general officer, a JAG Corps member, he was denied because the military, not only will they not take people living with HIV, but if you get HIV once you're in, they don't throw you out or they didn't, but they wouldn't promote you. They wouldn't move you from being an enlisted person to being an officer.
[00:16:32] So that's what we ended up suing on behalf of that gentleman as well as a couple of cadets who had gone through the whole training academy for both the Air Force and the Navy, one in each. And at the end of their four years when they were ready to become officers, it was discovered that they had HIV. And so, then they were denied their commissions, which is really what you're working to achieve all through the four years of military school.
John Reed [00:17:01] There's a lot of people that listen to this podcast who aren't lawyers, God bless them. I'm wondering if you could speak to the idea of the precedential value of the cases you've handled. Obviously, when there's a settlement, it doesn't necessarily have precedential value, but some of the cases have been adjudicated through trial or it's something more public where it's not necessarily confidential. Your work continues. So, it's not like one case solves the issue for those coming later. But maybe you could kind of speak to the effect that your outcomes have had on this area of the law.
Scott Schoettes [00:17:33] Sure, and I'll speak specifically, we can kind of continue in this military vein. The tricky thing about the military and the reason why it was sort of this outlier that was still out there was that the ADA does not apply to it and the Rehabilitation Act does not apply to it.
[00:17:47] So we had to bring our claims under the equal protection clause of the Constitution, which for the lawyers out there and for the non-lawyers presents just a whole host of additional hurdles and kind of has a higher burden of proof .
[00:18:01] But fortunately, we were able to do that, and took a lot of depositions, brought in really great experts, took tough depositions of their so-called experts to knock down this idea that, and really they had a couple of excuses. One, people with HIV might transmit while getting buddy aid out on the battlefield. Two people bleeding, you know, one's tending to the other. That was one concern. A second one and I'll credit this as being genuine, was that they thought they couldn't provide adequate care to people living with HIV out in the field. We had to debunk that idea. There's other conditions that people serve, and they get deployed with, that also require one pill once a day.
[00:18:50] So, we had to sort of show that that was true. And then the third thing was they were worried about the walking blood bank and that someone with HIV would donate blood and thereby end up, even if they had an undetectable viral load themselves, would end up transmitting HIV through the blood supply to other members.
[00:19:11] And we don't know what the risk is there. There probably is some level of risk, even for a person who has an undetectable viral load when you're doing a direct blood transfusion. It's probably still a risk there. It's not affected by the undetectable viral load calculus, but we basically knocked that one down by saying like, look, they're not going to donate blood. They know not to donate blood.
John Reed [00:19:35] Yeah, I don't think he could be an involuntary blood donor, last time I checked.
Scott Schoettes [00:19:38] And they're given an order when they test positive for HIV in the military, like very specific orders about how they can't donate blood. So, we knocked all those things down. We won, we got the court to issue a permanent injunction against the Department of Defense that said that they had to allow service members, people who were in the military already, living with HIV, if they had an undetectable viral load, and were otherwise stable, had to allow them to deploy and they had to allow them to commission as officers.
[00:20:18] That decision is now on the books. And that was from a court. We didn't settle, we went all the way to summary judgment. The court ruled in our favor. Now, other people and everybody seeing it in other cases and other situations get to cite to that decisional law about what the risks of HIV transmission really are and how they, you know, how they really don't present a threat to the risk, the health or safety of others. Now, it wasn't under the ADA, so the court wasn't making a ruling specifically on that. But the holdings that she did provide get us there across the board on all that stuff. And I'll give you an example.
[00:20:58] There's actually a case that Lamda is doing right now. I'm not involved in, but it's on behalf of someone who applied to be a police officer in Tennessee. And I can't remember whether it's a sheriff's office or police department, but whatever it is this police department was relying upon the military's policies for when they would accept a person living with HIV. Now we have this great decision that debunks and undermines what the military was doing and says, no, no, this is not legal. This is discriminatory. And I'm hoping, presuming, that they will be able to use that case to win the case and maybe push it to settlement on behalf of this police officer in Tennessee.
John Reed [00:21:51] That brings up an interesting question, Scott, and that is are there nuances to handling an HIV discrimination denial of benefits case? The strategies or considerations that distinguish it from other types of civil rights claims? You've certainly got privacy issues here. What goes through your head when you're trying to accommodate these types of matters, different from what another civil rights case may be?
Scott Schoettes [00:22:19] So you've identified one of those things, which is very important and that is privacy. At Lambda in particular, because we're doing impact litigation, we always want to kind of make a big deal about our cases and get press about them because maybe the employer who is thinking about doing something stupid, with respect to someone, a candidate living with HIV, maybe they see another case in another place and realize, oh no, what they're doing is illegal and maybe they don't do it. So, we like when our plaintiffs are willing to be out there. But at the same time, we always completely understood why they wouldn't want to be, because, unfortunately, HIV is still a highly stigmatized condition.
[00:23:04] I use this example for myself, from my own life, to try to explain to people. So, when I went to law school, you know, in your second year you start interviewing with prospective employers to go and spend a summer with them and then hopefully, be employed by them after that.
[00:23:19] And I was very out with those interviewers about my sexual orientation. I'm a gay man, and in fact, I used it as like a litmus test. I wanted to ask the question so that I would see if it made them uncomfortable. It was really a two-way interview in that regard. However, I did not bring up my HIV status. And that is because one, still highly stigmatized, highly misunderstood. At that time, I think people would've thought, oh, like he has a limited life expectancy. And really law firms, when they're out recruiting on campuses of law schools, they're looking for the people that are going to be with them and become partners. That's what they hope for, right? And so, I thought it might ding me in some way.
[00:24:09] By the way, I was very out about my HIV status in other parts of my life and with family and with friends. And people knew, pretty much from the beginning. But with this employment situation, I was much more guarded, and I didn't reveal my HIV status to the law firm that became my employer until I had been there almost four years.
[00:24:33] And it was because this is sort of my cynical reason for doing it. But it also had altruistic motives. But I was doing the AIDS/LifeCycle in California and a big fundraiser, and I knew if I went to people, partners at the law firm, and fundraise, with this very candid discussion of being HIV positive, that I would have a nice haul from that fundraising effort.
[00:25:03] But at the same time, it was also strategic that, well, now these people knew me and it wasn't like, oh, this is just a candidate for a job and whatever. That's like, this is going to be their only definition of me. They had a whole person that they had known for four years, and now I could add that piece of my life to the picture, and it would just be one piece and they would have to grapple with how that piece fit into the rest of me.
[00:25:35] The other thing that I think about in terms of my clients and their privacy, and not just their privacy, but actually, their potential liability, their legal exposure. There are a lot of states in the United States that still have laws on the books that make it a crime, often a felony, sometimes punishable by decades, for a person living with HIV to have sex with someone and not disclose their HIV status.
[00:26:07] There's so many problems with that, and we've been fighting that, and I've had cases that have been working on this. One of them went up to the Iowa Supreme Court where we got a conviction that had originally been for a 25-year sentence overturned.
[00:26:21] And in that case it was partly because, well, the guy was living with non-detectable viral load. There was actually no chance of him transmitting HIV, in addition to the fact that the conduct in which he had engaged with this other person probably wasn't even risky, even if he did have a detectable viral load.
[00:26:39] But the laws in most of these states don't pay any attention to any of that and really just criminalize having a sex life if you're HIV-positive. And you can't prove that you disclosed your status. And that's obviously; it's going to be a he said, he said, or he said, she said thing as to whether or not HIV status is disclosed prior to sexual activity.
[00:27:06] And it's been weaponized by people. You get a disgruntled ex and suddenly there's a prosecution. Now I'm sure that there's also situations where someone didn't disclose and then someone was disgruntled. But, as legitimately disgruntled as they may be with that person being truthful, there shouldn't be a criminal law option for them to go and cudgel that person with, especially if there was no real risk of transmission.
[00:27:35] In terms of my clients, I always had to check if they wanted to be public, that they weren't going to have somebody come out of the woodwork who now knows, sees their face and goes, oh, I had sex with that person and that person's HIV positive? Oh, he didn't tell me that. And then going after that person. It was an additional concern that we had.
John Reed [00:27:59] Does the law provide for a Jane Doe, John Doe plaintiff, in the types of matters that you've handled?
Scott Schoettes [00:28:06] Yeah. We usually haven't had any problem getting a court to agree that we can proceed with an anonymous plaintiff or pseudonymous. You have to file a motion and, you know, we kind of have the stock motion ready to go, talking about all of the things that we've just been discussing, the stigma, the misconceptions people have about how HIV is and is not transmitted.
[00:28:29] I mean, it's pretty horrible how many people think you can still get HIV from sharing a drinking glass. Five years ago, they were still thinking that. But the courts are generally pretty good about respecting that. As I said, it is more of a, well, it's harder for us to promote a case and to put it out there and get people to talk about it and get people to sympathize with your plaintiff if you can't interview that person, if you can't have that public face.
[00:28:58] And so the final thing I was going to say, and this was always tricky while I was at Lambda, people who are stigmatized or marginalized or discriminated against in other ways, to ask them to then add HIV to the mix, could just sometimes be too much to ask.
[00:29:18] So I'm talking about Black people. I would find that often Black people were more reluctant, in a very generalized sort of way, to be public about their status and be a plaintiff in that way. Transgender people, I mean, talk about a community that is under attack these days and is so marginalized and misunderstood. To add HIV as another thing that someone could discriminate against you based on, or that they could use in the criminal law to go after you, is a pretty scary thing. So, we always understood why a plaintiff might say, “I'd rather not proceed with my name out there.”
John Reed [00:30:02] Obviously what you do in your practice is fascinating and worthwhile and noble and important, but being a lawyer wasn't always in the cards for you. What was your path to the law?
Scott Schoettes [00:30:14] It's a very tortuous path. I actually started out as an actor. And I went to the University of Southern California, got my degree, my Bachelor of Fine Arts. It was a conservatory program, so like, basically took very practical kinds of classes; very few academic classes, even though I had done well in my high school. I turned my eye away from the academic side and headed toward the arts.
[00:30:42] I was lucky to have parents who supported that. Maybe it helped that they weren't paying for school, so maybe that made it easier to support whatever I wanted to do. And then when I graduated, I earned my living mostly in the musical theater and an awful lot of it dancing for about a decade. And I had roles and parts that run the gamut from working at a theme park to doing a national tour of “West Side Story,” in which I was fortunate enough to play Action and yeah, to do that show, which is just a classic of the American musical theater. And,
John Reed [00:31:19] And forgive me, that's Jet, not Shark.
Scott Schoettes [00:31:21] I'm at, I was a Jet, yes.
John Reed [00:31:24] Okay. All right. Because when you're a Jet, you're a Jet...
Scott Schoettes [00:31:26] All the way. And my parents, actually, one of their first dates, if not their first date, was to go and see “West Side Story” in Chicago, like in the theaters. So, it has a resonance for me.
John Reed [00:31:42] So you're touring. I was so hoping there'd be some romantic view that you were in “Inherit the Wind” or “A Few Good Men” or something, and the legal bug caught you but I know that's not the case. But when did the epiphany of law school happen?
Scott Schoettes [00:31:57] So it's funny because I actually, I was in “Inherit the Wind,” but I was literally like a townsperson. And this was back in like summer stock.
John Reed [00:32:06] You and I have that in common because I was a townsperson in “Inherit the Wind” in high school. So, we're part of the alumni.
Scott Schoettes [00:32:13] We are, we are. I was Mr. Banister by the way.
[00:32:17] So, how did law school sort of come up? I had gotten to a point in my career where, yeah, I was earning a living, but maybe it wasn't as nice of a living as I might hope. Was still living kind of hand to mouth, and the sort of big dreams weren't panning out in that way.
[00:32:34] And I was getting older. I wasn't yet too old to dance, but I was looking at other people who were still trying to, you know, kick it up at 38, 39, 40, and competing against some younger people. And I thought, “Hmm, maybe I need to make a change.” And I'd always knew that I had a brain that I wasn't completely using in the musical theater. I had done a little bit of directing, directing new musicals and I really enjoyed that. I thought about trying to head in that direction for a little while. But the fact is that there are even fewer jobs for directors than there are for actors because there's only one director for every show. And so yeah, I kind of pulled back, and thought about what other attributes I had, what other skills I might bring to the fore.
[00:33:22] And it was about the same time the awful case of Matthew Shepard happened. For folks who don't know, Matthew Shepard was a young man who was strung up on a fence in Wyoming, a gay young man, and killed, really just for being gay. And I thought, well, there's a need here. And maybe I could one day be a part of this movement to improve the lives of LGBTQ people. Although, at that time, we probably wouldn't have even said LGBT, much less LGBTQ. Those things have changed over time. But so that's how I decided to do it and the career change I decided to make.
[00:34:03] I actually studied for my LSAT while I was on the tour of “West Side Story,” and I had to take two nights off from the show because I think I was in Oklahoma City, and I had to go to Tulsa to take the LSAT. And the people on that tour, you know, other dancers, thought I was insane. I probably was insane, but it all worked out and I even got to do what I wanted to do in the law, which is just a very blessed thing.
John Reed [00:34:34] That job that you interviewed for, for your first employment out of law school, that wasn't in this particular area. Where did you start in the practice and then how did you get to Lambda Legal?
Scott Schoettes [00:34:43] I actually clerked right out of law school, so that was already sort of set up, right? After second year, I clerked in the federal district court in Maryland and applied for that in particular. I didn't apply to a clerkship at the circuit level because I really wanted to be in a trial court.
[00:35:03] And my thought was at the time that I'd like to be a trial attorney. I thought that would bring some of my former performing skills to the fore. So that was my sort of idea. And then, after that, I went and worked for a big law firm in Chicago and really learned how to be a litigator.
[00:35:22] At that time, Lambda would not take attorneys that were fresh out of school. I think you had to have five years’ experience as an attorney before they would really even consider you. Basically, as soon as I was eligible, and at that time, I still thought about, oh, maybe going to stay and be a partner, do litigation at a law firm.
[00:35:44] And I thought, well, if I'm going to be putting in all of these hours and really kind of killing myself, I should probably do it doing something I love. So, I went ahead and applied to Lambda. I actually didn't get the first job that I interviewed for, which I think is just a good anecdote and lesson for everyone. Like, try, try again. And, actually, at the end of that interview process, when the job went to someone more senior, they said to me, because I had been honest and candid with them about my HIV status—it made sense in that context. They asked if I wanted to apply for the job that I ended up getting or a different generalist position. I said yes. And then that's the job I ended up in as the staff attorney in the HIV project at Lambda.
John Reed [00:36:28] But then you later ran that department too?
Scott Schoettes [00:36:30] I subsequently, well, a little over two years later, the project director left, and I applied and got that job. So, I've been fortunate in those ways. And I will say, you know, people talk about opportunities and how we ensure that we provide opportunities to people across the spectrum of race and economic status and everything else.
[00:36:56] It was a hard choice to go from making the money I was making at the law firm, to the nonprofit salary that I started at, and actually needed to move to New York at the same time. So, I was literally making a quarter of what I had been making at the law firm.
[00:37:15] And I'll say it was a bit of a leap. I mean, I still have law school debt because of that choice that I made. And I was a self-supported law student. I put myself into pretty major debt and had to make a real leap of faith. It's one of the best decisions I've ever made, but I could also understand people not taking that same risk.
John Reed [00:37:36] That's a whole other episode that you and I and several other people could have about the cost of education and educational debt and how it affects your choices in the practice. But I appreciate you sharing your story.
[00:37:49] You've also had the opportunity to advise on and impact public policy. I mentioned you had various roles. Talk to us about that. You served under two different presidents. Two different presidential administrations. Maybe talking about the differences between the two and what your role was.
Scott Schoettes [00:38:05] Yeah. So first I'll say that being able to work in the policy arena along with the litigation, which is what I really had started off wanting to do but getting to also do policy. And then I've written legislation and been a part of legislative battles. So, done a little bit of legislative lawyering and then public speaking. It kind of was my dream job in terms of bringing all those things together. So that was fantastic.
[00:38:32] And you know, this role on the Presidential Advisory Council, no one had ever really done that coming out of Lambda before. I think it was a little bit unusual. And we had some questions about in taking this job, would I potentially conflict myself or Lambda Legal out of litigation against the government because that's something we do. But we were able to resolve all those things and I ended up applying and getting onto the Presidential Advisory Council on HIV-AIDS during the last year or so of the Obama administration. And, actually, kind of wormed my way onto the, to the council because I had been going to some of their meetings and this was when the administration was putting out the first national HIV AIDS strategy for the United States, which there's a whole story there.
[00:39:21] We, as a country, required other states to have a national HIV-AIDS strategy before we would send them money for HIV AIDS treatment, but we didn't have one ourselves. So, a little hypocrisy on the part of the U.S. but Obama finally put one together. And one of the things that the PACHA (Presidential Advisory Council on HIV-AIDS) was tasked with was to put together recommendations for voluntary disclosure of HIV status, like how to encourage and promote disclosure of HIV status, people's own disclosure, right? And so, they had a subcommittee who was tasked with doing that, and I was like, wait a minute, the government's going to tell people how to disclose their HIV status? That worried me because I saw, as a person working in the field, all of the negative consequences that could arise from disclosure of your HIV status.
[00:40:18] So I pushed myself not onto the body itself, but onto a group that they put together to help them figure this out. And then made very clear that I thought that the government should actually be talking about promoting an environment in which people felt safe disclosing their HIV status and not telling people how or when or why to disclose their status.
[00:40:43] So, the criminalization stuff was a big part of that. We were like, Hey, you’ve got to tell people, like, both the risks and the upsides. So, if you're gonna promote disclosure, you’ve got to share both sides of the coin and maybe we shouldn't actually be telling people to disclose.
[00:41:02] And then as a result of that work, I think even though I was being the fly in the ointment, it was appreciated, nonetheless. And that's how I ended up applying and then getting on the body. I think did some good work while we were there working on stigma and trying to identify and reduce stigma. I chaired the Disparities Committee of the body. There were like four committees, so I co-chaired that with someone. And then an election happened in 2016.
John Reed [00:41:30] I've heard about that.
Scott Schoettes [00:41:31] Yeah. We all had a lot of stakes in, and suddenly come, well, after the election happened, I was like, okay, well I have to quit the body. And I had colleagues on the PACHA who said, well, maybe don't quit. Maybe we should stay and try to be a force for good. Maybe we can do more good from inside than from throwing rocks on the outside. And we gave it the old college try. We wrote letters as soon as the president was in office, as soon as he was inaugurated, talking about ourselves and the body and what we thought was possible.
[00:42:11] Honestly, we tried to play to his ego and told him he could be the president that ended HIV AIDS in the United States. And, in a nutshell, he didn't care. We never heard back. It's not an issue that he was good on to begin with. You know, there's stuff about Roy Cohn, who died of HIV, and how President Trump really dumped him at that point in his life.
[00:42:35] So, it's not surprising that he wasn't good. We were still hanging out. And then I saw what he was trying to do to the Affordable Care Act. I had a couple cases when the ACA case went to the Supreme Court; we filed an amicus brief, basically advising the court as to what the ACA meant to people living with HIV and to our ability to fight the epidemic. And we've been there every time the court has taken up an ACA case. So, I've been fighting hard to have that law stay in place. And when I saw the president trying to take it down without any thought of what would replace it, I decided that I couldn't stay any longer and be on his presidential advisory council.
[00:43:19] And I led five other people. We did a group resignation from the council, and I wrote an op-ed that appeared in Newsweek. We, I think, achieved our goal, which was to bring attention to the issue and the importance of the ACA for our community.
John Reed [00:43:37] That is a short trip along a very long career. You left Lambda Legal to open your own practice. What are you doing now? How is that practice going? And what's next for you?
Scott Schoettes [00:43:49] Indeed I have several cases that are still going. Some of them sort of legacy from the time that I was still at Lambda, and some of them new. In particular, we're actually waiting right now for a decision on summary judgment, on our case on behalf of people who want to join the military who are living with HIV. So, we won for people who are in active service and people who want to commission, who are in active service. But we didn't have a plaintiff that was looking to join the military, so we brought that case. We've been litigating that against the government. I would actually say that I think the government's been horrible in how they've been litigating this and the positions they've been taking.
[00:44:34] Essentially, our otherwise friendly government is allowing the Department of Defense to argue that it's too costly to provide medical care to people living with HIV, which is, I think, a pretty disgusting argument for the federal government to be making, especially because they fight this kind of discrimination in all other contexts.
[00:44:55] So I've got that going. I've got a case on behalf of a prisoner who was sentenced completely inappropriately because the judge had a mistaken sense of what the risk of transmission was from the conduct in question. So those things are still going, and I continue to do consulting work on policy stuff, and you know, kind of working behind the scenes on some of these things, continuing to do some work with the Presidential Advisory Council on HIV-AIDS in that way.
[00:45:26] And this is exciting to me. I've taken a year and I'm traveling the globe. I'm speaking to you right now from Bangkok. And I'm kind of using this time to figure out what my third act is going to be. So, I had my first act in acting, and then my second act in the law, and I'm exploring what I want to do next.
John Reed [00:45:48] I'm excited for you. I know whatever you choose to do next will be fulfilling. You've made it your career to help people, to impact lives, and I can only imagine how grateful your clients and others living with HIV are to you and for you. And I'm grateful that you shared your time and story with us.
[00:46:07] So thank you for being here today.
Scott Schoettes [00:46:09] If people want to follow my journey, I will just say because I'm also trying to help people in this regard, I have a website that's called thirdact.vision. So, it's third act, all spelled out, dot V-I-S-I-O-N. And in addition to my travels, I'm just exploring this idea of getting to this stage of one's life and expanding and growing what you're doing to have a really fulfilling third act.
John Reed [00:46:36] I will tell our listeners, I will encourage them to visit stickylawyers.com to learn more about you, Scott, and we'll have links, not just to that website, but to other information so they can learn more about you and become more familiar with the important work that you've done and what you're doing and what's next for you.
Scott Schoettes [00:46:54] Thank you so much.
John Reed [00:46:55] Regardless of where you found us or may be listening to us right now, please take a moment to click that follow button. That way you'll learn more about new episodes when they come out, and you'll be letting us know that you're a fan, what we call a stickler, and we would appreciate that.
[00:47:13] Until next time, I'm John Reed and you've been listening to Sticky Lawyers.
[00:47:18]
HIV Attorney, Advocate, Consultant, and Mediator
Scott Schoettes is an attorney and legal advocate for individuals living with HIV who has led landmark cases challenging discriminatory policies and practices in various contexts. As the former HIV Project Director for Lambda Legal, Scott's legal efforts, grounded in science and advocacy, culminated in federal court rulings mandating fair treatment for HIV-positive service members. He was appointed to the Presidential Advisory Council on HIV/AIDS in 2014. Scott continues his legal crusade, driven by a passion for justice and a commitment to destigmatizing HIV/AIDS.