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January 2005
A Blooming Iris
The Satya Interview with Marie Saint Cyr

Life as an HIV-positive woman in New York City can be a frightening and lonely experience. In addition to the physical symptoms suffered, many HIV-positive women and their families are alienated by a society that is equal parts ignorant and apathetic towards the HIV/AIDS epidemic and the families affected by it.

Marie Saint Cyr is Executive Director of Iris House, the first community-based organization created by women living with HIV/AIDS in NYC. Established in 1993, Harlem’s Iris House provides comprehensive services to meet the needs and enhance the lives of HIV-positive women and their families. Last month, Iris House observed World AIDS Day with a march to City Hall and a well-attended press conference.

Prior to her current position, Saint Cyr was the Director of the Haitian Coalition on AIDS to New York City and developed the Women and AIDS Resource Network (WARN) in Brooklyn. She also served as Deputy Commissioner for Human Rights under Mayor David Dinkins, initiating the Commission’s Prison Project for Offenders with AIDS.

Marie Saint Cyr is also currently community co-chair of the HIV Planning Council of New York City, and serves on the advisory board of the National Institutes of Health subcommittee on HIV/AIDS. Kymberlie Adams Matthews had a chance to talk to Marie Saint Cyr about Iris House, her activism and what keeps her going.

When did Iris House begin and why?
Well, 12 years ago we were seeing some women in NYC who were sick and diagnosed with AIDS, but mostly with drug addictions. However, back then all the services were geared towards gay men. Before Iris House, I started the Women and AIDS Resource Network (WARN). We were really just providing general information on HIV and AIDS, yet people were calling in from all over—Canada, the Caribbean, as well as here in the States—just to ask about women with AIDS. A lot of calls were in reference to having children and living with the burden, the fear, and the secrets. It was only a few months later that we started seeing the numbers of infected women rise.

I then became the Deputy Commissioner for the NYC Human Rights Commission. I used to go to all the meetings, not out of duty, but because of concern. We had an AIDS discrimination unit, responsible for overseeing some of the things that were happening with people living with AIDS in NYC, so this issue has been in my path for years. That is how I was recruited to start the Iris House.

The concept for Iris House itself really originated from the women themselves. They really needed the services, they were sick. The hospitals wouldn’t help them. At that time, there were so many critical questions about the transmission of HIV. The Iris House was basically established to intervene on behalf of those women and families whose lives have been altered by HIV/AIDS and to provide them with services that address their many significant needs in a supportive and respectful environment.

That must have been such a hard time for people diagnosed. What services does Iris House offer?
We offer what I call a comprehensive case management, because we offer lots of different services. When a woman comes in by herself, with her children or her whole family, we assess what their needs are. Then we link them to medical care; advocate for them to get appropriate treatment; and provide support for their adherence to treatment. We work towards resolving all other critical issues too.

We also have a nutrition program, which to me is an essential component. Eating is so vital for quality of life when living with HIV. Very important is also the quality of the foods. You have to understand, we are dealing with meds that have to be taken with certain foods. In our food distribution plan, women get produce once a month and grains and dry goods twice a month. We try to give a minimum of canned goods because the salt content is very bad for them.

Another part of the nutrition program is cooking classes, which teach women how to cook better and to eat differently, eat better. We provide them with things like tofu to increase their protein; show them how to wash beans to decrease the potassium. It is an on-going, life-learning, lifestyle change.

We also have support and education groups. This year we are very blessed to have a psychologist and two counselors on staff. The complexity of the issues these women encounter requires that type of expertise and we really want to offer that. We have support for disclosure—it is a very hard thing telling your family and your children. And we also help with planning for the children’s future.

You know how housing is a critical need in New York City and with people who have less access, it is even more dire. So we have 66 apartments and they are pretty much always full. With the housing program we have a whole prevention component, which embraces women in the program who have made forward strides. They become our educators—for a stipend—and work to provide education to the community.

Finally, we offer childcare. It allows us to meet with them and observe them while their parents are in the services.

What are some of your greatest obstacles?
I think the greatest obstacle is the stigma attached to HIV and AIDS. It is a moralization stigma—women who get HIV are promiscuous, they have no morals, and they give it to the children. There is always blame. That has become a real obstacle, leaving a barrier of guilt and shame in talking about HIV; in admitting that you are HIV-positive. This barrier allows people to escape when they have tested positive—allows them not to face it for years until they become symptomatic.

The second greatest obstacle is the fact that this is a disease you can catch today but it doesn’t manifest itself for 10 years. So in the meantime, you may be infecting other people and you just don’t know it. And in the U.S. the whole promotion of testing and prevention has been fragmented. We just chase the virus—if gay men are getting it, we are doing prevention for them; drug users, we target them. What we are not doing is a national prevention effort. Anyone who is having sexual encounters, sharing needles or body fluids in any way, or that may be in contact with someone who is HIV-positive, is at risk. Right now the CDC has relinquished new data showing that there are over 200,000 HIV-positive people who don’t know it. So the possibility of having new infections on a daily basis is very real and we are seeing it happen more and more.

I can only imagine the courage it takes to admit you have the disease. Getting political for just a moment, what is your take on the Bush administration?
I am so frustrated. I mean, first Senator John Edwards sidestepped the issue during the vice presidential debate. And I am shocked that Vice President Dick Cheney admitted that he didn’t know the United Nations said that North America had the world’s largest increase in infections among women between 2001 and 2003, and that federal data shows that although African American and Hispanic women account for less than 25 percent of the country’s female population, they account for almost 80 percent of all female AIDS cases reported to date. In NYC alone we’re talking about 26,000 cases, and women of color are about 91 percent of them. To me that is a tremendous number to be ignored.

I think that the officials speak for themselves. They are moving toward the moralization of this illness and the medicalization of HIV. They are seeing everything with a medical eye—get to a doctor and get tested. But they don’t realize that the medical system has not been the most accessible, especially not for poor people and women of color. So we have a lot of things set against us and still very little noise has been made about it. We need an administration that is not only going to be amiable and understanding but is also going to base things on science and facts. I think we have a crisis of public trust. When I hear that the Vice President doesn’t know this is an issue, it makes me feel even more uncomfortable as a woman of color.

With the moralization of HIV and AIDS, it seems to me that this administration is turning us back 30 years.
The issue is clear: Can the moralization of HIV save lives? I think not. But I think there is quite a bit of scientific data that tells us that in a country that sells sex, abstinence is not going to work. We need to get clear and realistic. Our children are having sex, having babies at 12 years old, and every time we turn on the TV, we are watching the bodies of women and young girls being sexually exploited. We need a reality check. We know that the approach of the administration has not been the best when it comes to representing and caring for people with AIDS. So we are definitely concerned about the ability to maintain services for those living with HIV and AIDS.

What gets you through the day?
Oh, it gets hard, really hard. This summer has been one of the hardest summers for me and I have been working with AIDS for a long time. From July to November, I have seen 14 people—our staff, two of our board members—my friends die. Linda helping here for 11 years; and Delores. I tell you, it physically hurt.

But I really believe that there must be some good core in humanity that will serve as a catalyst to change some things in the world. I just can’t see how something that affects 48 million people has not made a difference. Access to care. Access to basic drinkable water so people can take a pill. It still doesn’t exist for many.

So many people just want to turn their backs—if they don’t see it, it doesn’t exist. But they have to look at this. They just have to. This is an opportunity for humankind to look at the large gap that we have created between north and south, and east and west. I just feel, and maybe even naively so, that we will turn around and look at each other in a way that is more humane, more completely compassionate. This is the only thing that gives me hope.

I keep telling my staff, I want to sell flowers in a corner somewhere—beautiful orchids, scented roses and blooming iris—and even if they die tomorrow, I am still going to see them as being just as beautiful the next day.

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