DOING THE WORK
The M·A·C AIDS Fund presents a series of profiles on individuals exhibiting commitment, compassion & courage. These often unsung heroes are shining examples of extraordinary people triumphing against all odds.
MEET REGINA QUATTROCHI
On paper, Regina Quattrochi is formidable – a labor lawyer who has served as CEO of Bailey House, a New York City organization providing supportive housing to people living with HIV/AIDS, since 1991. In daily life, she goes by “Gina,” a working mom of two whose unwavering commitment to HIV/AIDS is radically changing lives. Fiercely determined and brutally honest, Gina has gone head-to-head with agenda-driven politicians, homophobes, racists and misogynists. Under her leadership, Bailey House currently offers housing to about 200 HIV/AIDS clients and their loved ones, provides housing placement assistance to another 300-400 per year and non-housing services to another 300-400. Her philosophy is straightforward: “Housing is a human right, even if you only have a week to live.”
Why did you get involved with HIV/AIDS?
It was both a response to the fact that by 1985 a number of friends, predominantly gay men, had been infected and died, and recognition of the fundamental necessity for everyone to have a roof over their head. It’s a primal need to have someplace to sleep at night, rest when you’re ill and a stable place to raise your family.
Renting in NYC is challenging under the best of circumstances, what are some of the additional complications faced by someone living with HIV/AIDS?
Renting in NYC is terribly expensive and people living in poverty simply can’t afford it. It costs about $1000/month for a one-bedroom apartment. If you’re surviving on social security ($1,100/month) or living on public assistance ($600/month) where are you going to live? Early on, we recognized that AIDS was simultaneously a disease of poverty, accompanied by homelessness and what’s euphemistically called “food insecurity.” I call it hunger.
What about health care?
Health care needs to be understood as an issue that goes hand in hand with the need for stable housing; without it, consistent health care is virtually impossible. Imagine if your life is chaotic because of poverty and you’re struggling to manage this frequently horrific illness, attend a drug addiction treatment, keep doctors’ appointments and get food for your kids, but without a consistent place to live. Effective health care depends on taking these complex factors into account.
Do you have an equal number of male and female clients?
Women represent about 30% of our clients, about equal to the percentage of women in the United States living with HIV/AIDS. Women, however, are undercounted in most strategies and mostly ignored in national and local HIV/AIDS policy. Most clinical trials have been conducted with men, so there’s a lack of understanding of how these treatments affect women. On the ground, I see increasing numbers of women in their 40’s and 50’s whose lives have been devastated by loss – of their children to ACS and their partners to jail, drugs and illnesses including AIDS. They’ve been evicted from their homes, subjected to violence and often forced to do sex work for minimal survival. These women have little or no voice. How can we stand by and watch an entire healthcare system pass them by?
With so many causes vying for support, how do you keep the focus on HIV/AIDS?
It’s very hard. HIV and AIDS expose the intersection of racism, homophobia, gender misogyny and poverty, in a graphic way. They have to be tackled to make change. We look for ways to “market” solutions so they don’t sound so overwhelming.
Bailey House has really embraced social media and pop culture – how does this further the cause?
Many of us came to HIV and AIDS work from a social justice background. You have to know what’s happening on the ground, how culture drives disparities and inequities. It’s imperative to keep our work connected to the community or it loses its power to make change. I continually work to make social change – through federal, national and local advocacy activism. I was just arrested in November for civil disobedience….
You politely blogged the day before you were arrested that you would be engaging in civil disobedience because then-Governor Patterson went back on his word about the rental cap legislature.
I did. It was the first time I was arrested. I had to ask my kids’ permission because I agreed about 8 years ago (when they were 8 and 13) that I wouldn’t get arrested. They understood the significance of trying to live on $360 a month, which is what many PLWHAs are left with after NYC and NYS take over 70% of their income. We weren’t asking the government for money, we were asking them not to take peoples’ money. We were charged with obstructing traffic and we were out in an hour [most demonstrations are negotiated in advance with the police]. A week before our court date, the judge dismissed the charges against all the women who were arrested. This is one time sexism worked in my favor.
Have you ever felt like giving up?
There are times when I feel really tired. It’s sometimes painful having to ask one more person to provide financial support for things I know are life and death. Often it’s easier to garner support for the more obvious problems, but I’ve seen something as ostensibly small as a bowl of oatmeal make an incredible difference. It can be challenging to get people to understand that making a difference doesn’t require having to solve all of someone’s problems. It’s often the smallest gesture that makes an immediate, impactful difference.
What keeps you going?
The people I work with, both staff and clients. Our clients are remarkable. At times, it’s inconceivable to me that they could be hopeful – but they are – and they’re resilient. I see how far a little bit of support goes and how the world really can be different if we just take care of each other. I’m also supported by family – my kids, my former partner of 20 years, my new partner, my friends and the amazing “entourage” of advocates working in the HIV/AIDS community – who keep me going…. And, of course, funders, like all of you keep making this work possible.
MEET RACHEL TIVEN
You fall in love with someone backpacking across Europe or on a business trip in Asia. Imagine…it’s the fairy tale version of your life come true. Unless you’re gay. Rachel Tiven, Executive Director of Immigration Equality, knows all too well how few gay, lesbian, bisexual, transgender and HIV-positive people find happily ever after endings when they fall in love with someone from a different country. Tiven works tirelessly at personal and federal levels to rewrite immigration laws and to win LGBT equal rights. It’s a tricky network of laws, but Immigration Equality has made significant headway over the last few years – challenging Congress to lift an antiquated Federal ban that barred people with HIV from entering the United States and garnering support from the Oval Office on dire asylum cases, especially in the Caribbean. Tiven’s goal is to keep families and lovers together. You could say Tiven is the ultimate hopeful romantic.
Why are immigration rights for same sex couples so important?
I can’t think of anything more tragic than being separated from the person you love. The price of anti-gay discrimination should not be physical separation without hope of being reunited. This is really a cruel and purposeless kind of discrimination.
Last year you had a big win – the US lifted the ban on travel and immigration for people living with HIV/AIDS.
That was a huge victory. It ended a dangerous and pointless policy that encouraged people who were HIV-positive to go underground and live in denial because it could jeopardize their immigration status. It proved that it’s possible to change immigration law for the better. To inspire Congress to change the law, to make it more fair and humane, is not a pipe dream. It is realizable.
And yet the US still doesn’t support same-sex immigration while more than 20 countries, including Brazil, South Africa and Israel do.
US immigration policy and human rights laws have a long history of unfavorable treatment toward gay immigrants.The inspiring news is that there is more awareness and attention to LGBT rights and needs compared to a decade ago. Fundamentally, the attitudes of people about immigrants need to change. Immigration is a tremendous resource for America. Nothing could be more damaging for the economy or national interest than to dissuade people from coming here.
You’ve had some successes with asylum work....
More than 2000 people from more than 100 counties contact us every year for help. It’s ironic, when people say, ‘I’m American and I’m in love with a Frenchman. How can I get him a green card?’ They can’t. However, if someone says, ‘I fell in love with someone from Zimbabwe but he’s terrified to go back there,’ we can help. The US does not grant gay people equal rights but if you are an LGBT threatened with persecution, you can win asylum in this country.
We’ve represented hundreds and have won more than 250 cases for LGBT and HIV-positive people seeking asylum over the past few years. We asked the Obama administration to train asylum officers to work with LGBT and HIV-positive people and we’re now doing that. We’re a small organization but we have 40 elite law firms doing pro bono work for us and had a 100% success rate last year.
That’s incredible. Do you see more clients from certain countries?
We have more clients from Jamaica than from the next four countries combined. The homophobia our Caribbean clients have endured is more severe and violent than any other region in the world. In particular, our Jamaican clients have survived heinous physical and psychological abuses, including arson, rape, stoning, beatings and death threats. Myths about gay people and AIDS fuel the epidemic, and our Caribbean clients are nearly twice as likely to be HIV-positive than clients from other regions.
Why is it so severe there?
The “why” is complicated. It’s a combination of colonial anti-sodomy laws that have metastasized into something local and ugly as well as a higher tolerance for personal violence than in many other countries.
Can you share a personal experience of one of your Caribbean clients?
When one of our lesbian client’s parents learned she was gay, they threw her out of their house. When a group of men, claiming they were curing her of her lesbianism, raped her she fled to New York City. She found Immigration Equality two days before the strict one-year filing deadline for asylum. In a single day, our legal staff met her, filed her asylum application and placed her case with pro bono attorneys. When she revealed that her girlfriend, with whom she was living, was abusing her, we arranged supportive counseling, housing assistance and employment help. Last July, she was granted asylum.
That was an incredible day. What is a bad day like?
When people call asking, ‘Why was my partner denied a visa and why was he kicked out?’ It’s no excuse that they’re gay, but it is the official, presently legally binding reason.
Do you ever feel like giving up?
No. We’re going to win full parity for LGBT people in the next 10 to 15 years.
MEET ALLAN CLEAR
Allan Clear isn't afraid of going to the dark side. A person with a history of drug use, he realized in the late 1980s that even if he couldn't get people off heroin, he could help them avoid AIDS and Hepatitis C by giving them clean needles. As a member of ACT UP's needle exchange committee, he would go out on foot from shooting gallery to homeless encampment, around New York City's Lower East Side. "I had a sense that I couldn't just sit back and watch," he says. It may not have been a solution to AIDS or addiction, but it helped lower death and illness rates. "And it was a good experience," he says. It wasn't long before Mr. Clear, English born, and a photographer with a punk rock attitude, became the first executive director of the Lower East Side Harm Reduction Center, one of five original syringe exchange programs in 1992 sanctioned by New York City. A few years later, he became the executive director of the Harm Reduction Coalition, a national advocacy organization that promotes the health and dignity of individuals impacted by drug use. The Manhattan-based organization, which receives support from the M·A·C Aids Fund, specializes in serving women, minorities and other at-risk communities with issues around HIV, Hepatitis C and incarceration.
What is courage?
It's taking action even when it's tilting at windmills. I mean, how do you live with yourself when you know you did nothing about a problematic situation? If you're being courageous it doesn't hurt to be a little crazy too.
What's the most courageous thing you've ever done?
Dealing with the death of my daughter. Aside from that, admitting in my 20s that I had a drug problem and that I had to take control over my life. This was in the 1980s when I was a bartender and started to ask everyone around me if they thought they had a drug problem. When they said no, I told them, "Well, I do." Then I did something about it, which is that I quit. I also once drove a Serbian family out of a Croatian town that was under attack. But that's another story.
Who has a job that takes a lot of guts?
Activists and human rights workers in other countries where they could be imprisoned for working in harm reduction. Our country is repressive in some ways, but at least you can go out publicly and give people condoms and clean needles. Friends thought I was brave to go into shooting galleries years ago. But the truth is, I had something people wanted so I was usually welcome.
Who are the courageous public figures you admire?
Martin Luther King, because he continued to speak in public knowing he could be assassinated at any time. Nelson Mandela, who got out of prison during apartheid and continued his work without bitterness. Bayard Rustin is a totally unsung hero. And music icon Patti Smith is a heroine to me for showing how art could be incorporated into life. The Sex Pistols too.
They inspired a cultural rebellion. They weren't afraid to explode the notion that you had to be a certain way as a band. They weren't educated or privileged. They didn't ask permission. But they had something to say and they had the courage to get up and do it.
Last question. What are you afraid of?
To be in this job 20 years from now. For me, work is personal, so I never want to feel I'm not engaged at ground level in the job. But more importantly, it would be great if someday soon my job and HRC became unnecessary!
MEET DANE LEWIS
Island life is anything but laid back for Dane Lewis, the executive director of JFLAG – the Jamaican Forum for Lesbians, All-Sexuals and Gays. Named by Human Rights Watch in 2004 as the most homophobic place on earth, Jamaica has seen improvements since then. But it is still a long way from a tolerant nation, and although there aren’t as many hate murders as there once were, every year 40 incidents of violence against the GLBT community still get reported. Against this backdrop, HIV rates among men who have sex with men in Jamaica are startlingly high at over 38% and it is believed that this environment has contributed to a situation in which men who have sex with men are unable or unwilling to come forward for HIV prevention, testing, care and treatment services. But lately, that is changing, as JFLAG, founded in 1998 and supported by the M·A·C AIDS Fund, runs regular rallies and protests and makes its presence known to the parliament and the police The organization has the dual goals of improving the lives of gays, bisexuals and lesbians in Jamaica and creating an environment in which these groups can be reached with effective HIV prevention, care and treatment programs. Writer Bob Morris talks to Lewis about life on an island that at times seems the opposite of its “One Love” advertising campaigns.
Your organization doesn’t publish its address. Are you scared of being attacked?
Yes. And when I began my job in 2008, I also used a pseudonym and would not show my face in the media. Since then I have dropped the pseudonym. It’s a test to see where we are in terms of tolerance. I don’t want to be living a lie.
JFLAG, your organization, has been holding monthly rallies lately. Is that going well?
We have been working with the police to be supportive, and they have improved from recent years when they were physically and verbally abusive to gays and transsexuals. Part of the service we provide is making our people comfortable with the police and taking them in to report crimes.
Why did you take the job of executive director of JFLAG?
I’ve always been involved in the community as a volunteer. Years ago, whenever my parents went away, I’d organize support group meetings in their house. Then when the previous head of JFLAG sought asylum in Canada because he’d been under threat here, I took the JFLAG job. Since then we have more than doubled our staff from two to four.
What is courage to you?
The will to do what you have to do regardless of potential dangers.
Who do you think of as a courageous public figure?
We have a local politician here named Ronne Thwaites who is also a well-respected deacon of his Catholic church. He has always been vocal about the need to respect the rights of all people and end discrimination.
What’s the most courageous thing you’ve ever done?
After changing my pseudonym and coming out to my mother, it is standing at our rallies and marches holding the banner that bares the JFLAG name. Crowds yell degrading comments. Sometimes they yell “Fire!” They want us to burn. And that’s one of the more palatable things they yell. But we also get people honking horns in support as they drive by and giving us the thumbs up.
Are you afraid of anything right now?
No, not really, not even death because we all have to die sometime. I can’t live my life in fear or I would never leave home.
What gives you hope?
When we have our political rallies and I see the police now want to support us and make us feel comfortable. It’s really a daily stripping away of fear. I’m less afraid than I was three years ago, and that’s great.