Debbie McMillan’s Plenary: Making Waves: The Changing Tide of HIV and Drug Use
26 July 2012
The following speech was delivered by Debbie McMillan of Transgender Health Empowerment as a plenary address at AIDS 2012 on Thursday, July 26. Posted with permission.
Good morning and thank you all for being here. Before I give my presentation, I’d like to invite you to watch messages from my peers around the world.
Welcome to the United States. We’ve missed you for the last 22 years.
I want to especially thank the IAS for giving me this opportunity to speak to all of you. It’s a privilege.
Who am I? Like most people, the sum of who I am is much more than my individual traits. However, there are facts that categorize me as “high risk” in the HIV world.
I’m African American.
I’m a transgender woman.
I used to be a drug user.
I used to be a sex worker.
I used to be incarcerated.
For 20 years I lived a life that virtually guaranteed I would contract HIV.
But that shouldn’t mean that I was then, or am now, irrelevant.
That would gravely underestimate me and miss an important opportunity to address HIV.
I’m here today because I represent people at the heart of the AIDS crisis – a small group with a big HIV problem.
If this is true, then it should be equally true that the solution lies with people like me. When people like me are included in the design of policy and programming, these programs are much more successful. They are much less so when we are not consulted.
While everyone in the high risk populations that I represent are individuals with their own unique set of circumstances, the broad outlines of my story are not uncommon.
I went to the street alone at 14. It seemed the only place for someone like me.
I became a commercial sex worker because I believed it was the only occupation available to me.
I got high to dull the reality of what I had to do to survive that life.
My addiction to drugs took me to places that I never want to go back to.
Crack smokers – my drug of choice when I was using – are three times more likely to be infected with HIV than non-smokers.
For many years injection drug use directly and indirectly accounted for more than one-third of AIDS cases in the United States.
Clean syringes are an essential component in the prevention of HIV among people who inject drugs. Research consistently demonstrates the effectiveness of syringe exchange in preventing transmission.
But syringe exchange programs are prohibited from receiving federal funds in the United States. In fact, Congress just last year re-established that funding ban.
Chris Collins, of the Foundation for AIDS Research, calls the decision anti-science and anti-public health.
But I don’t need research to know this is true. I’ve seen it myself – both on the street and later when I worked with HIPS, an organization that provides clean syringes and other services to sex workers.
Drug use and sex work go together like power and money. You can have one without the other but it doesn’t happen often and it didn’t with me.
It’s hard to get good data on the rate of HIV among sex workers in this country. But I can tell you that out there infection is considered inevitable.
Having HIV drives sex workers further into the shadows, further into depression and despair, and leads to more drugs.
And in this country, the drug use and sex work are themselves crimes.
No matter how risky your life on the outside, being in prison is worse. After one of many arrests for solicitation, I was sent to a men’s prison – and housed in the wing with the murders and rapists. I’m sure you can guess what happened. Nothing is gained by describing the details.
I could have gotten HIV anywhere, but I’m convinced I got it in prison.
Americans are sent to prison in this country every day just for using drugs. In fact, the United States incarcerates more of its citizens for drug use than any other country on the planet. This ensures that we get multiple public health problems instead of just one.
Instead of helping users identify and decrease risky behaviors, the American legal system punishes them in a way that significantly increases the chances of HIV infection.
If you really look hard at drug addiction, you’ll see that it’s just a symptom. For me, it was a product of the stigma I experienced for most of my life as a transgender woman, a chick with a dick.
And that’s for those of you who don’t understand what a transgender woman is.
Data isn’t uniformly collected for the transgender population so we don’t know how many of us in the US are infected with HIV. What data there is indicates high rates.
My mother was an IV drug user and a sex worker. She left me with my grandmother.
For some my mother represents everything that’s wrong with America; someone who could have risen above her circumstances if she’d stayed in school, but who chose a life of drugs and prostitution instead.
For others she represents the failure of society to take care of the most vulnerable among us.
To me, my mother was the only person who ever completely accepted me just as I am.
Unlike my mother, my father disowned me when it became clear that my sexual identity was not what he thought it should be. On the street I looked for acceptance, family, a man who would give me what my father never did.
At some point, my mother was infected with HIV. While she was still alive and living with my grandmother, she had one cup…one fork…one spoon…one plate. When she used the bathroom, my grandmother followed behind her, bleaching everything she touched.
During one of my incarcerations for solicitation, my mother died of complications of AIDS. I had to view my mother’s body alone…in shackles and handcuffs.
Two months later, I was diagnosed with HIV. I was 20 years old and convinced I was going to die.
So there I was; a stigma on top of a stigma. As a rule, medical personnel don’t excel in bed side manner when it comes to transgender people.
It’s hard enough to face HIV. You want a doctor who understands that your entire life changes the instant you get that diagnosis. Not someone who doesn’t bother to look in your eyes and see the very basics of who you are.
On the street I lived my life as Debbie. I had a different name once but that name has nothing to do with who I am today. To have a doctor consistently call me by my birth name feels like a punch in the stomach. It feels like one cup…one fork…one spoon…one plate.
When you’re using drugs there are high moments and low moments. In the high moments, you just want to keep getting high. In the low moments you think about the things that drove you to use drugs and your self-esteem plummets.
I broke free in a low moment when I thought I could actually envision living my life as a woman. That single wish to actually BE Debbie is what made me persevere.
I got into the Bridge Back recovery program, which was specifically for HIV positive LGBT people. The key to its success was that they accepted me one hundred percent.
Any inkling of a barrier, any whiff of attitude would have given me the excuse I needed – actually the excuse I was looking for – to leave and go back to the street.
For me to kick drugs, I needed to focus on that single goal – without the distraction of being HIV positive, without being a sex worker or a transgender woman. When I had that space, I stopped using. Then I got off the street.
I came to the organization Transgender Health Empowerment, the only agency in Washington DC that provides services specifically for transgender people. Through them I found supportive housing.
I got a cosmetology license but my heart was with the family I found on the street. So I got a job with HIPS. And then three years later I started working at Transgender Health Empowerment as a specialist in Comprehensive Risk Counseling. Our primary goal is to help drug users, sex workers, and transgender people get connected to the social services they need to prevent or live with HIV.
Now I’m Debbie in every sense. But the Bridge Back program is gone. It died for lack of funding.
The lesson I want to impart today is that if you include people like me in your program design, you get solutions like Bridge Back, solutions that work. No matter how well meaning, a program that didn’t truly understand where my head was when I walked in the door was never going to be successful. We need MORE programs like Bridge Back. Not less.
If you include people like me in your advocacy efforts you get powerful proponents for syringe exchange funding and changes to drug laws.
This conference is the perfect venue to discuss what does and doesn’t work and why. I don’t want to be on the outside looking in
I want to collaborate with all of you, AND my peers who are in Kolkata and those who were in Kiev because they can’t be here.
As you know, the United States, while generous with HIV funding around the world, has policies that make it extraordinarily difficult for current or former sex workers or drug users to enter the country.
If you honestly respond to the questions on the application for a U.S. visa, someone who has engaged in either of these activities during the last 10 years will be denied entry. You can apply for a waiver – at a cost of more than $500 – but when you arrive our system says that you have confessed to crimes of moral turpitude.
You can be denied entry anyway. You passport is then branded with this confession.
I, like the IAS, applaud President Obama for lifting the ban that prevented people living with HIV from entering the U.S. – and I’ll tell him that if I get to meet him. However, it would be far more productive for our government to eliminate policies that are moral judgments and have nothing to do with good public health.
The U.S. entry ban sends the message that people who have a history of drug use or sex work are not actually included in this dialogue. This is a serious setback in the fight against AIDS.
It would be better for this conference to be located where the most affected groups could participate.
In fact, peer driven programs often prove the most successful in combating the epidemic in both the sex work and drug user groups. Over and over, my peers and I have proven our value. Don’t underestimate our knowledge and our potential for contribution.
Let us help!
If we are truly Turning the Tide Together, then transgender people, sex workers, and drug users – people like me – should be part of the solution.