Why World AIDS Day Matters.
I make my living working with a segment of society that is marginalized and often forgotten-the substance addicted. My program works with women who are in the early stages of substance abuse recovery [usually less than a year] who are often homeless and survivors of some of the most horrific acts you can imagine being perpetrated against another fellow human. Most of my clients have a long, colorful history of intravenous drug use, trading sex for money, drugs or a place to live, and sexual assault or abuse. In fact, clients who don’t have such a history are the exceptions to the norm. They are the forgotten faces that society and government would prefer to ignore-they cost money, appear to be useless, and remind us of the tenuous nature of our humanity; as we all are a heart-beat away from standing in their shoes.
This past Sunday, a client who has returned to the program for the third time after a relapse and subsequent fall-out came into the office to show me pictures of her family and children. She doesn’t know me or know anything about me-she’d only met me that afternoon-and I was the first staff she’d talked about herself and her background. She is in her early twenties and has been struggling with her addiction to crack cocaine and heroin since she was in her teens. ‘X’ appears to be permanently altered by her drug abuse-she cannot sit still and has trouble engaging her emotions in any way that would be considered normal for her age. She has been with us before and it’s been about a year since she was last a resident. She is also the first client we’ve had in recent history who we have known is HIV positive. I’m sure there have been others whom have been positive and haven’t known it or have chosen not to tell us. It has been a learning experience for some of us who have not worked with clients with classified health information before-we cannot refer to her status in writing anywhere, as our records are able to be subpoenaed-and there is a marked lack of education among my co-workers as to the transmission of HIV.
X is not sure how she became positive-she has an extensive history of sharing needles, sexual assault, and trading sex for money/drugs, so it could’ve been anything. Last year, while she was abstinent from drug use, she became pregnant with twins. They’re fifteen months old now and absolutely gorgeous-she is of mixed race and their father is Hispanic, so they have beautiful coffee brown skin and dark curly hair. She showed me a video of them toddling around on unsteady legs in the basement of where she used to live. They were born HIV positive. She didn’t find out she was positive until after she gave birth.
She showed me a picture of her sister, a beautiful woman with a wide smile. She died, at age 17, of complications from untreated HIV. She showed me pictures of her best friend, who went missing in Worcester this summer and has yet to be found. X thinks her friend’s fiancée murdered her because she told him that she had recently found out that she was HIV positive. She showed me pictures of herself when she was sober with her fiancée and she twisted the diamond ring on her finger. They’re taking time apart right now because he’s upset with her for relapsing and he isn’t sure he wants to spend the rest of his life with someone who, as she puts it, is wearing a death sentence around her neck.
She tells me that she’s going to get a visit with her babies this coming week at the DCF office in Worcester. She lost custody of her children after her most recent relapse-she was arrested on possession and sex for a fee charges and DCF decided she was no longer fit to be a parent. Her children were put up for adoption and were adopted this year by a couple who will allow X to see them several times a year.
She shows me pictures of herself when she was sober and was unaware of her HIV status and it’s almost unrecognizable. She stands up straight and has a big smile in these pictures. She looks happy. In front of me, she’s in sweats and a t-shirt because her belongings are in transit from the last program she was in. Her face is without any indicator of emotion and there’s no life in her eyes. She can’t sit still and shifts and twitches through our conversation-this is typical of long-term crack cocaine users, even if they are not currently using. We talk about her a little bit and how she got where she is.
The shame is palpable and bitter. She tells me she’s never used condoms for sex with romantic partners because they didn’t want to and never with tricks because you can get more money if you’ll have sex without a condom. She says she feels dirty all the time and that no one, not even her fiancée or her dad who brought her to the program and begged us to take her back, will love her. She has no hope to stay abstinent because she’s never been able to. There is no life beyond this minute for her-she can’t imagine anything better than a halfway house because she’s never known anything better. In her eyes, my life is worth more than hers because my HIV status is negative.
I don’t know if she’ll be successful this time in staying abstinent from substances. I hope she will, but, in reality, the odds are stacked against her. There is a ten percent success rate in programs like mine, meaning that out of every twenty women that come through our doors [a full house] only two of them will manage to stay abstinent after completing or graduating the program. The success rate for HIV positive individuals in recovery is even lower and, in Worcester, a city that has one of the highest numbers of drug-related arrests in the state, it scrapes even lower.
Every time she uses a substance, X runs the risk of contracting Hepatitis C or another infection which could push her into full-blown AIDS. Every time she uses a substance, X runs the risk of not coming back. She has lost everything-family, children, home, partner, health, self-respect-and all that she sees as having left is her actual life; her literal consciousness.
I had the chance to meet X’s father later that afternoon when he came by the program to drop her off an alarm clock. He’s a man with sadness and, even only exchanging greetings with him, it was easy to see why. He only has two children-one died before she was grown from a disease that his other child, an addict who only surfaces when she needs help or money from him, is being consumed by in non-physical ways.
This is the effect of HIV and AIDS-a fractured, damaged family that many never find reconciliation or peace, an individual who sees the world as adversarial and grey and as a place which doesn’t want her. This is the cycle that a social cancer perpetuates-transmission, in this case, by pain of some sort, growth through numbing and escape, and a return to pain in an attempt to deal with life as it is presented. The victim is not just the person who replicates an invasive strand of genetic material. This touches everyone X comes in contact with-whether it is her children, her father, her fiancée, or my other clients who see her as marked and a reflection of what could await them should they choose to return to a life on the streets.
There is largely no community for people who are living with HIV and AIDS that became positive through activities that are often considered reprehensible by even the most liberal sections of modern society. There are no community fundraisers for junkies and hookers who are seroconverted in the dark. There is no campaign to recognize the viability of these lives, as horrifying as they may appear to us. There is almost no compassion for individuals who convert outside of tightly controlled boxes of what is and is not acceptable.
This is why World AIDS Day is important-to remember those who don’t make the PR campaigns of people living with AIDS and HIV, to remember that education doesn't provide a meal and that the difference between life and death may not be a condom, but a chance to live and be heard without stigma and shame. This is why World AIDS Day leaves me feeling hopeless and helpless-all the ads and radio spots make it sound simple; wear a condom and stay AIDS/HIV-free. It’s not as simple as that and the message is lost when your next meal or next dollar lives in the pants of a man whose name you don’t know. It’s hard to think of the bigger picture when you live at the mercy of a needle or a pimp.
I don’t know the answer to the problem. All I know is that there still is a problem and I’m looking at it every time I clock in. The growing invisible minority needs to hear that a disease is not a definition and that who they were yesterday is not who they are today when they sit opposite me in my office. If nothing else, we need to remember that disease reaches everyone, no matter the social strata or sexual orientation or activities engaged in. We need a reminder that the transmission event should not define treatment or inform societal or personal worth.
Today, I think about X and her babies. I think of clients who have been too afraid or too ashamed to get tested or tell someone their status. I think about all the families and friends and acquaintances of those living with the disease that suffer with them. I think about how privileged I am to be living another day without HIV/AIDS as part of my reality. Most of all, I think about a society where access to shame-free healthcare is not a right of the addiction-free. In the current political environment, it might be a pipe dream but, like the addict who hopes for a better life, a teeny tiny spark of hope lies somewhere in the space between myself and X.
This past Sunday, a client who has returned to the program for the third time after a relapse and subsequent fall-out came into the office to show me pictures of her family and children. She doesn’t know me or know anything about me-she’d only met me that afternoon-and I was the first staff she’d talked about herself and her background. She is in her early twenties and has been struggling with her addiction to crack cocaine and heroin since she was in her teens. ‘X’ appears to be permanently altered by her drug abuse-she cannot sit still and has trouble engaging her emotions in any way that would be considered normal for her age. She has been with us before and it’s been about a year since she was last a resident. She is also the first client we’ve had in recent history who we have known is HIV positive. I’m sure there have been others whom have been positive and haven’t known it or have chosen not to tell us. It has been a learning experience for some of us who have not worked with clients with classified health information before-we cannot refer to her status in writing anywhere, as our records are able to be subpoenaed-and there is a marked lack of education among my co-workers as to the transmission of HIV.
X is not sure how she became positive-she has an extensive history of sharing needles, sexual assault, and trading sex for money/drugs, so it could’ve been anything. Last year, while she was abstinent from drug use, she became pregnant with twins. They’re fifteen months old now and absolutely gorgeous-she is of mixed race and their father is Hispanic, so they have beautiful coffee brown skin and dark curly hair. She showed me a video of them toddling around on unsteady legs in the basement of where she used to live. They were born HIV positive. She didn’t find out she was positive until after she gave birth.
She showed me a picture of her sister, a beautiful woman with a wide smile. She died, at age 17, of complications from untreated HIV. She showed me pictures of her best friend, who went missing in Worcester this summer and has yet to be found. X thinks her friend’s fiancée murdered her because she told him that she had recently found out that she was HIV positive. She showed me pictures of herself when she was sober with her fiancée and she twisted the diamond ring on her finger. They’re taking time apart right now because he’s upset with her for relapsing and he isn’t sure he wants to spend the rest of his life with someone who, as she puts it, is wearing a death sentence around her neck.
She tells me that she’s going to get a visit with her babies this coming week at the DCF office in Worcester. She lost custody of her children after her most recent relapse-she was arrested on possession and sex for a fee charges and DCF decided she was no longer fit to be a parent. Her children were put up for adoption and were adopted this year by a couple who will allow X to see them several times a year.
She shows me pictures of herself when she was sober and was unaware of her HIV status and it’s almost unrecognizable. She stands up straight and has a big smile in these pictures. She looks happy. In front of me, she’s in sweats and a t-shirt because her belongings are in transit from the last program she was in. Her face is without any indicator of emotion and there’s no life in her eyes. She can’t sit still and shifts and twitches through our conversation-this is typical of long-term crack cocaine users, even if they are not currently using. We talk about her a little bit and how she got where she is.
The shame is palpable and bitter. She tells me she’s never used condoms for sex with romantic partners because they didn’t want to and never with tricks because you can get more money if you’ll have sex without a condom. She says she feels dirty all the time and that no one, not even her fiancée or her dad who brought her to the program and begged us to take her back, will love her. She has no hope to stay abstinent because she’s never been able to. There is no life beyond this minute for her-she can’t imagine anything better than a halfway house because she’s never known anything better. In her eyes, my life is worth more than hers because my HIV status is negative.
I don’t know if she’ll be successful this time in staying abstinent from substances. I hope she will, but, in reality, the odds are stacked against her. There is a ten percent success rate in programs like mine, meaning that out of every twenty women that come through our doors [a full house] only two of them will manage to stay abstinent after completing or graduating the program. The success rate for HIV positive individuals in recovery is even lower and, in Worcester, a city that has one of the highest numbers of drug-related arrests in the state, it scrapes even lower.
Every time she uses a substance, X runs the risk of contracting Hepatitis C or another infection which could push her into full-blown AIDS. Every time she uses a substance, X runs the risk of not coming back. She has lost everything-family, children, home, partner, health, self-respect-and all that she sees as having left is her actual life; her literal consciousness.
I had the chance to meet X’s father later that afternoon when he came by the program to drop her off an alarm clock. He’s a man with sadness and, even only exchanging greetings with him, it was easy to see why. He only has two children-one died before she was grown from a disease that his other child, an addict who only surfaces when she needs help or money from him, is being consumed by in non-physical ways.
This is the effect of HIV and AIDS-a fractured, damaged family that many never find reconciliation or peace, an individual who sees the world as adversarial and grey and as a place which doesn’t want her. This is the cycle that a social cancer perpetuates-transmission, in this case, by pain of some sort, growth through numbing and escape, and a return to pain in an attempt to deal with life as it is presented. The victim is not just the person who replicates an invasive strand of genetic material. This touches everyone X comes in contact with-whether it is her children, her father, her fiancée, or my other clients who see her as marked and a reflection of what could await them should they choose to return to a life on the streets.
There is largely no community for people who are living with HIV and AIDS that became positive through activities that are often considered reprehensible by even the most liberal sections of modern society. There are no community fundraisers for junkies and hookers who are seroconverted in the dark. There is no campaign to recognize the viability of these lives, as horrifying as they may appear to us. There is almost no compassion for individuals who convert outside of tightly controlled boxes of what is and is not acceptable.
This is why World AIDS Day is important-to remember those who don’t make the PR campaigns of people living with AIDS and HIV, to remember that education doesn't provide a meal and that the difference between life and death may not be a condom, but a chance to live and be heard without stigma and shame. This is why World AIDS Day leaves me feeling hopeless and helpless-all the ads and radio spots make it sound simple; wear a condom and stay AIDS/HIV-free. It’s not as simple as that and the message is lost when your next meal or next dollar lives in the pants of a man whose name you don’t know. It’s hard to think of the bigger picture when you live at the mercy of a needle or a pimp.
I don’t know the answer to the problem. All I know is that there still is a problem and I’m looking at it every time I clock in. The growing invisible minority needs to hear that a disease is not a definition and that who they were yesterday is not who they are today when they sit opposite me in my office. If nothing else, we need to remember that disease reaches everyone, no matter the social strata or sexual orientation or activities engaged in. We need a reminder that the transmission event should not define treatment or inform societal or personal worth.
Today, I think about X and her babies. I think of clients who have been too afraid or too ashamed to get tested or tell someone their status. I think about all the families and friends and acquaintances of those living with the disease that suffer with them. I think about how privileged I am to be living another day without HIV/AIDS as part of my reality. Most of all, I think about a society where access to shame-free healthcare is not a right of the addiction-free. In the current political environment, it might be a pipe dream but, like the addict who hopes for a better life, a teeny tiny spark of hope lies somewhere in the space between myself and X.