Where are you from, and why there?
My early childhood was spent literally on the banks of the Mississippi River, in the small town of Hannibal, Missouri. My parents moved there from their native New York City because of my father’s job. It was a great place to be a kid but I can’t imagine how hard that change must have been for my parents. For me, it was a life of exploring caves, camping, girl scouts, and river rafting. I was too young to fully understand that I was growing up in the Jim Crow South, but did understand that I was never to cross the railroad tracks that divided Hannibal between black and white. Just before I started junior high school, my father’s job took us to a small town near Gary, Indiana. I grew up as a first-generation Irish Catholic kid in a blue-collar neighborhood in what would, sadly, eventually become the Rustbelt.
Which issue(s) do you work on/care about, and why?
Everybody of my generation has a list of those they lost to AIDS. Mine is long and shaped most of the footprint of my civil rights work. I tried and won the first jury trial under the then-new Americans with Disabilities Act while working for the Equal Employment Opportunity Commission (EEOC), in Chicago, and, as a result of that, was asked to join the Civil Rights Division of the U.S. Department of Justice. It was at Justice, during the Clinton and then Obama years, that we all were able to accomplish so much to advance the civil rights of those with HIV. From the Supreme Court’s ruling in Bragdon v. Abbott [which held that persons who have, or are being perceived as having HIV or AIDS, have a “disability” under the Americans with Disabilities Act and therefore are entitled to the law’s protections] straight through to crafting the National HIV/AIDS Strategy, it was a steady climb out of those darkest days into the present, where new infections are down significantly in many categories and the science has advanced to the point where so many are living with HIV as a chronic health condition. Key word: Living. It was a privilege to serve at Justice with some of the most brilliant legal minds I have ever come across.
How did you get involved?
My summers before and during college were spent working in the steel mills and factories near Chicago. I still have my hardhat from my days as a United Steelworker. Watching the entire way of life tied to those mills just disappear, without any regard for how it would economically impact those people – my people – and their ability to make a living, was an important driver in my decision to go to law school, which led to the EEOC. I felt like someone needed to represent working-class people against the giant corporations and government interests that were swallowing them whole. I still feel like both political parties view being working class a virus from which you need to be cured.
What are the biggest challenges for the issue(s) today?
A few years ago, while presenting at meeting of the President’s Advisory Council on HIV/AIDS, I called for a “re-branding”of HIV. HIV is still the girl with the bad reputation that can’t be outrun. The general public’s view of HIV is much the same as it was in the late 1980s to early 90s. It is that outdated view that continues to fuel marginalization, discrimination, stigma and the serious consequences of state laws and military policies that criminalize non-disclosure of your HIV status. Given the medical advances, people in the U.S. who don’t survive the virus are really dying not of the virus so much as marginalization, stigma, poverty, homelessness and lack of access to healthcare.
Who are your most frequent allies in your field? Any surprises?
I would say the traditional disability community was a fierce ally. If it weren’t for the Disability Rights Education and Defense Fund, HIV would not have even made it into the Americans with Disabilities Act as a covered disability. They risked losing the entire bill over that, for which we are in their debt. It is hard to imagine the history of HIV without the protection of the ADA. Many others, of course, first among equals ACT UP, Lambda Legal, Gay and Lesbian Advocates and Defenders, the ABA’s AIDS Coordinating Committee and its very loud and highly respected voice. I was privileged to be their lawyer, but the most important individuals were those who stood up and said, “No more. I have rights. We have rights. And we will not be treated this way anymore.”
What drives you?
A core belief that the central purpose of being a member of the human family is to care for and be in service to one another. We are all just walking each other home.
What do you want your career/advocacy to stand for?
I still teach disability discrimination law because it gives me the opportunity to reach young people with the message that the world can be changed for the better. It can be exhausting and frustrating and take way longer than it should, but it can and must be done. I tell them the same thing that a young nun told me when I was just a small girl questioning how God could let so much bad happen in the world. I think she was quoting someone famous when she told me, “Nichol, there are many problems in this world. Pick one and make it your life’s work.”
Plus, you never quite know have far you are willing to go for a cause until you are tested. For example, I think people would be surprised to learn that I am a master-level square dancer, and when I lived in Chicago I was a member of a troupe of square dance drag performers that performed at a number of AIDS benefits. Yes, it’s true: I Was a Square Dance Drag Queen. To quote Emile Zola, make no mistake: I may wear a conservative blue suit, but I came into this world “to live out loud.”