How does the loss of a family member to a tragedy like 9/11 affect your ability to lead? How can you stay grounded in love when working on challenging issues like abortion and HIV/AIDS? Terry McGovern, chair of the Heilbrunn Department of Population and Family Health at Columbia’s Public Health School is here to explore the realities of staying accountable to the communities you serve and letting them lead the way.

Ms. McGovern founded the HIV Law Project in 1989 where she served as its executive director until 1999. Ms. McGovern successfully litigated numerous cases against the federal, state, and local governments, including forcing the Social Security Administration to expand HIV-related disability criteria so that women and other excluded individuals could qualify for Medicaid and social security, and other pioneering work in this area focusing on reproductive justice.

Tune in this week to discover the resilience and focus it takes to survive personal tragedy and continue serving the most marginalized people in your community. Terry is sharing the most significant things she’s learned in her fight for reproductive and health equality and how we need to ground our leadership in these turbulent times.

What You’ll Discover

  • How Terry operates at the intersection between gender, health, and human rights.
  • The unprecedented criminalization we’re seeing over women’s reproductive rights.
  • How feminist activism has changed the landscape for abortion rights (and so many other issues) all over the world.
  • Why Terry believes, as a society, we haven’t made more progress on gender justice issues.
  • How structural sexism and racism has led to discriminatory definitions of diseases like HIV/AIDS.
  • Terry’s work in resourcing herself to help the folks who are directly impacted by legislative decisions.
  • How, as activists, we can think differently about the work we’re currently undertaking.


Columbia University’s Mailman School of Public Health Terry McGovern on Twitter Terry McGovern on LinkedIn

Full Transcript

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How does the loss of a family member to a catastrophe like 9/11 affect your leadership? How can you stay grounded and love while you work on challenging issues like abortion and HIV AIDS? Join Terry McGovern, Chair of the Heilbrunn Department of Population and Family Health at Columbia’s Public Health School to explore how you stay accountable to the communities you serve and let them lead the way.

Welcome to Leadership Moves, a podcast for visionary changemakers ready to shake up and re-envision the world. I’m your host, Mallika Dutt. Join me and my extraordinary guests as we discuss how to generate social change through leadership and the entrepreneurial, non-profit, and philanthropic fields.

Mallika: Welcome, Terry, to this episode of Leadership Moves. I am so delighted to be speaking with you. I have known you for almost four decades now I think. We first met when you were working on HIV and women when you were running the HIV Law project. And ever since then through your entire life trajectory and now as the Chair of the Heilbrunn Department at the Columbia Mailman School of Public Health. You’ve stayed consistent in your commitment and focus on the intersection of gender, health, and human rights.

And so, I’m really excited to talk to you today because God knows, we are at quite an inflection point around all of the issues that fall into that intersection. And so, Terry, I just wanted to begin our conversation with asking you about what’s top of your mind these days? What are you focused on?

Terry: So, this department has a long history of working on reproductive justice and we are very involved in access issues. So very much on my mind is that the Supreme Court is going to overturn Roe v. Wade in June. And the argument was so deeply upsetting on so many levels, both because it didn’t address the fact that the state of Mississippi has really not taken care of women and children, women of color and children of color very well at all.

So, the way that this argument played out that somehow this was about saving children was really horrifying. A lot of things were said in that Supreme Court argument by the Supreme Court. Statements like, “We should just make the women go to term. We can terminate their rights. The babies can go to safe havens.” What we’re seeing is really criminalization at a level that we haven’t seen before. We’re going to see students who have, DACA students, people on F1 visas.

The ramifications of abortion being illegal in so many states are huge. So, we’re doing a ton of work trying to both figure out and ensure access to medical abortion but also anticipate the kinds of bizarre criminalization that is beginning to occur. And also really shed a whole light on this whole mythology that we can just force women to have the babies, and then we can terminate their parental rights, and then the babies could be adopted. There is such huge problems in the foster care system particularly for Brown and Black children.

And Mississippi, Texas, the very states pushing to outlaw abortion are the very states that have systems that are rife with human rights abuses against kids. So, we’re trying to really hold up what it is they’re saying versus what is actually happening because there’s a huge gap.

Mallika: So, Terry, one of the things that’s happened in this movement overall is that we’ve often made this strange distinction between the global and the United States. There is the separation between the United States as somehow being exceptional or separate from the rest of the world as if the global does not include the United States.

And what you’re talking about in terms of the undermining of the right to abortion and the criminalization of women in this unprecedented way. Makes me reflect on how much work we have done as a women’s movement on similar issues in other parts of the world without really connecting the ways in which the same trends are playing out in the United States.

And since you’ve been a part of the movements globally and domestically, I’m curious to hear what your understanding is of what are some of the factors that are leading to this kind of pushback against women, women identified people, the world over. How can we be in this place in 2022 where we fought for justice and equality to such an extent and yet we are dealing with this kind of violation of fundamental human rights?

Terry: So yeah, first of all I think it’s interesting because a few of us faculty are planning a teaching for students next week. Because our students are saying, “We really want to do something, what can we do?” And prominent in that set of presentations is kind of examples from the GreenWave, there are examples all around the world of women, but people supporting abortion rights.

And in the context of worse stuff than we’re experiencing in the US and in very many places it’s really been feminist activism has had a huge impact in kind of turning back these really regressive policies. So, one thing is kind of connecting voices in the US to these global voices which you’re talking about. But also bringing in examples from the antiapartheid struggles.

There are so many examples throughout the world of kind of feminist activism that has been really powerful and really effective and not just feminist activism, activism when the laws, when the insider strategies aren’t working. So, I do say that there are points of light throughout the world. On the other hand, there is kind of this, you know, whether you’re talking about climate change or you’re talking about conflict, you see women at the center of kind of everything good that’s happening.

And this has created a backlash all over the place. I think if you look at the use of these gender ideology strategies that many, many leaders in many parts of the world are talking about, anything having to do with gender is bad. It’s imposed by the Global North. We are threatened by these concepts. And that’s just ridiculous because in country all over the world there are feminist leaders who are holding the line on democracy, holding the line against industry just kind of polluting everything.

So, I think the backlash to some extent has to do with effectiveness in certain places. On the other hand, I do think the enormous amounts of funding that has been poured into gender issues, which of course is never enough. But it’s often coming through the multilateral system which then is funding in many cases, governments, or large international NGOs to do the work. And the very radical work that you see these activists dong, the feminists on the ground is often not the recipient of these enormous funds that flow from the multilateral or Global North donors.

So, I think one factor in why we’re not doing better on gender justice issues is frankly the more palatable, the less threatening forms of work is what actually gets supported. As opposed to the kind of cutting edge activism that’s talking about deconstructing systems that are inherently racist or sexist. So, I think we need to really take a hard look at what gets funded and what doesn’t.

Mallika: I’m reflecting back on when I did meet you. You were one of the first people that began to talk about the impact of HIV AIDS on women through the HIV Law project. And I’m thinking about that work at a time of a huge pandemic when we are again faced with the COVID pandemic. And you’re being one of those frontline activists pushing the issue of the impact of HIV AIDS on women at a time when there was very little funding, zero resources.

And I’m curious to hear how you reflect on the evolution of your own leadership from that point to now. Because in addition to the work that you’re doing around reproductive justice and the focus on abortion in the United States. You’re also in the midst of doing public health work at a time of another global pandemic. Where are the throughlines for you in terms of your leadership?

Terry: So, they’re all over the place, frankly. I mean for one, my years at the HIV Law project showed me that people who are directly affected by these problems are the people who have the answers. So, it was HIV positive women of color who first said, “HIV is different in me. There’s something wrong with what’s happening here.”

So, I got trained very early on how I needed to be mentored by my clients who were actually living this stuff, that I had a role to play, a technical assistance role. Because I had training as a lawyer that could actually be helpful to them, to make them understand that these things that they were experiencing were discrimination caused by a structurally racist and sexist system. I could be helpful in sharing that information, but I certainly didn’t need to be speaking for anybody.

The other thing I learned at the HIV Law project was that science is not objective. That they had only studied white gay men and that’s why we had a definition that was discriminatory. But I also saw that they were, you know, I had cases where we learned that they were prohibiting women of childbearing potential from being in the early phases of clinical trials without even bothering to figure out what the drug was. They were actually trying to sterilize HIV positive women before they let them in trials.

So, all of this gave me a really healthy skepticism about science, about federal agencies. So how is that playing out now? It plays out constantly. When COVID hit I said, “They’re going to overlook converging epidemics. We’re going to see communities that have the worst kind of environmental pollution affected the most.” And of course, that played out.

We also have known for a very long time that a lot of the health conditions that women experience, women of color experience have everything to do with environmental exposures caused by industry. Very, very underfunded research there because of course industry always say, “We’re talking about communities that already have underlying disease burden. It’s too complicated to figure out.”

These are all the same arguments that were made about why we couldn’t expand the AIDS definition to include the things that women were experiencing. It’s too expensive. These communities have too many other problems. You can’t blame HIV. So, I would say this kind of structural racism, sexism informed by kind of a lack of oversight, whether it’s industry’s input into these issues, or kind of the lack of understanding of the way structural racism works in these federal agencies.

Those are consistent throughlines in what I do every day here and what I did at the HIV Law project.

Mallika: So, when you say these are consistent throughlines, terry, for a lot of folks understanding the relationship between what’s happening at the individual level and how that connects to the community and then the structural level can be challenging. And then it can also start feeling like we’ve been in this fight, we’ve been in this struggle for such a long time. And how are we still in this place. So really two questions for you.

One is, what are some ways in which you resource yourself to continue to be in this battle. To continue to be in this movement space of trying to shift the structural issues that are impacting people at the same time as making sure that the folks on the ground who are being impacted are getting access to the services and the resources they need. How do you resource yourself in doing that work?

And the second related question to that is, how should folks who are in the movements think maybe a little bit differently about the work we are doing at this moment in history?

Terry: I think that I’ve been very lucky at the HIV Law project, the women that I work with and men that I work with who are so, even this was way before there was treatment available. So, these were people who were dying and having to fight the federal government to have it acknowledged that they were dying. And get things like Medicaid, get into trials. So, I learned from them that even in the worst circumstances there’s this incredible resilience and joy. And humans are capable of doing great things if it’s kind of related to love.

I mean that sounds a little, my son would say, cheesy. But I really learned that from my initial clients that as bad as things can be there is great inspiration and joy in kind of as a community, as a team actually rejecting these really harmful narratives. So, to just say, all the talk, all the language we use in public health, disparities, communities of color have all these disparities. This is what my students would call a kind of problematic framing.

When you really look at how communities, you talk about Indigenous communities have survived all these thousands of years. It’s packed with resilience, and lessons, and joy. It’s such a wrong framing to just talk about all the negatives. So, I guess what I’m able to do in my work is just constantly take from the positives while fighting the negatives.

And I think I have told you this personally that I learned, when I faced a tragedy in my own life it was really the lessons I had learned from my partners in my work that helped me to survive that. So, work takes but it also gives for me tremendously.

Mallika: I’m going back to what you just referenced about the tragedy in your own life, many tragedies but one tragedy where you lost your mother in the 9/11 attacks on the Twin Towers in New York City on September 11th, those many years ago. It’s been quite remarkable for me to see how the personal tragedy that you experienced has been connected by you again to narrative, and storytelling, and love, and connecting our humanity across multiple identities, multiple sectors.

And I’m just curious if you would amplify a little bit more about what you referenced, your personal tragedy, what it is that you learned from all of the women that you worked with at the HIV Law project and where you are now. What was really the biggest learning that you might be able to share with folks who are listening in?

Terry: So, of course, my trajectory was I was doing HIV work way before there was treatment. So, a lot of the, you know, I did a very famous class action about the women not being studied and included in the definition. And none of those plaintiffs, none of the plaintiffs in that lawsuit are alive. So, I saw a lot of, there was so much loss in that work. But I also saw how we really needed, how directly affected people are often just not in the conversation. They’re just used. They’re just tokenized.

It was a big part of my work to not have that be the case in anything we did. And so, then I left after 10 years and wanted to kind of take a break and lo and behold my mother worked at the World Trade Center and was killed. And there I was suddenly a victim being spoken about as a 9/11 family member this, and the 9/11 families think that. And of course, I disagreed with mostly everything that was being said. My mother would have disagreed with the invasion of Iraq.

So, all of those same skills being suspicious of what caused this thing to happen, all of those things I learned in the HIV Law project I had to apply in my fighting to get the 9/11 Commission. And being a part of the group that actually was demanding some accountability around the Saudi government. But also, on a personal level I felt at moments I would not be able to survive this event, not just because my mother was killed, it was the exploitation of her death, to do everything that I hate to unleash Islamophobia, to unleash the war on terror.

It was heartbreaking and devastating at the same time as I was experiencing a very deep loss. I was a new mother. My son was six weeks old. So where did I get the ability to actually survive? I had this very low moment when Condoleezza Rice at the 9/11 Commission basically admitted that they knew the attacks were going to happen in August. And I thought to myself, I cannot, I cannot survive this.

And it was one of my favorite clients who I always call my biggest mentor, Katrina Haslip’s very clear voice in my ear saying, “Get up. Get up. Get up. You can survive this, Terry, you’ve got this.” And so, I stood up and screamed shame at Condoleezza Rice. That’s the most specific example. But the truth is all of these women, my ancestors in this particular way got me through the experience. I would not, I don’t think I would have survived it had I not been taught by them.

Mallika: Talking about ancestors in this way, it’s such a beautiful reminder that we have ancestors at multiple levels. Usually when we invoke the term ‘ancestors’ we are thinking about blood lineage. But really we have ancestors in movement space, and friendship space, in Earth’s space, at so many different levels.

And I know that for you, the Irish ancestry, and the Irish lineage that you have been finding a deeper connection with over the last couple of years has been playing a very important role in how your own leadership is evolving. Can you talk a little bit about that and what that means for you?

Terry: Yeah, interestingly I’ve had a complicated relationship to being Irish American. I always like to say I was representing Brendan Fay who was fired for marching with the gay group from his Irish Catholic school. I was in St. Patrick’s Cathedral when ACT UP did their demonstration, and I was spit on by somebody who looked very much like my grandmother. I have been in lots of struggles with what I would call the Irish Catholic Americans kind of patriarchal approaches to many things.

But strangely when I went through all these years I was doing a lot of work around 9/11 families against the Muslim ban, 9/11 families against this and that. And I was contacted by this group in Ireland called Irish Stand which was created around Trump being elected. They’d contacted me saying, “We’re looking for good Irish Americans who believe in human rights, who we feel are much more representative of our country than all of these Irish people that Trump is surrounding himself, meaning Ryan, and Pence.

And so, I went, and I spoke at Riverside Church at their event. And these people were just completely like me. They were from Ireland, completely like me. So that made me actually decide to try to investigate who my ancestors were. And pretty soon, pretty early on I learned I was related to girls who had been shipped off from the workhouses in 1850. And then when I looked even further these girls were outrageous. They were fabulous. They were biting their captors and escaping, and sleeping with each other.

And I very quickly found my ancestors at a pretty advanced age. And it kind of all made sense to me suddenly that maybe I come from a long strain of outliers, outliers driven by love actually. So, it’s been an interesting journey.

Mallika: Well, I certainly get to witness you living out your outlier journey with enormous amounts of love with ancestors of all kinds having your back and showing you the way. While you forge your own path and create pathways and show your own way to so many others in the movement space, your students, your colleagues, your friends.

I just want to close with asking you at this time, here we are 2022, year of the water tiger, all of the challenges and all of the opportunities that we are facing in the world right now. Is there something that you’d like to share about how we need to be grounding our leadership at this movement?

Terry: Yeah. I mean I think kind of remembering that pulling back the lens and remembering all the pressures that are affecting us. And remembering that we really do, do this work hopefully out of love. Remembering that people have survived, all kinds of people have survived horrific circumstances and they’ve done so with grace and love. So, I think if we can kind of stop just all criticizing each other quite as much as we do and kind of get back to this place of honoring the incredible people that we get to walk this planet with.

And that doesn’t mean we don’t have really hard battles that we have to fight right now. But I never stop noticing the incredible people that are around me all the time.

Mallika: Thank you, Terry, I am very grateful that I get to walk this incredible planet with incredible you. Thank you so much for your time today.

Terry: And I’m grateful that I get to walk with you and thank you so much for talking to me.

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Podcast music composed by Devadas, (c) Mallika Dutt, LLC 2022

Production team: Mallika Dutt, Kiani Ned, Loubna Bouajaj, and Digital Freedom Productions