“The more things change, the more they stay the same.” This could be the mantra of the many communities and individuals that continue to be impacted by HIV/AIDS. More than thirty years after the Human Immunodeficiency Virus (HIV) was identified, those living with it continue to experience the same fears, stigma, and loathing that marked the early years of this world pandemic. The stories echo eerily similar chords despite the passage of time.
Over the past twenty years, I have had the opportunity to work with some of the most courageous, determined, and focused individuals that many of us would ever meet. They have struggled with governments, families, communities, and churches to ensure that they receive the medical care and dignity deserved by all human beings. Successes have resulted in myriad advances in medical care, compassion, and healthier relationships within the United States and other countries.
In 1989, I was offered an opportunity to coordinate a pilot program for high-risk youth, training them to be peer educators. I knew nothing about HIV/AIDS. I had many of the same misconceptions that many Americans had. How could someone deserve sickness or death because s/he loved someone? They didn’t. How could we use silence and ignorance as a method to keep people healthy and safe? We couldn’t. How could a disease be “gay?” It was not. As with other diseases, we continue to minimize the need for resources to prevent disease and to help people develop the skills they need to protect themselves.
And so, people living with HIV/AIDS allowed small groups of volunteers and professionals to join them in becoming educated and in educating our communities. It has been an incredibly difficult but rewarding process typified by taking one step forward and fifteen steps back. We went through periods of joy. At the same time we responded in fear and sometimes hatred—enacting archaic laws and criminal consequences that had little to do with disease control; we stigmatized and discriminated against people and entire communities; we ignored science to placate the uninformed.
I think it is easy for most of us to think of HIV as “those people’s problem.” It is not something that happens in our families, our professions, or our communities.
During the last few decades, my moments of “getting it,” were the result of individuals and families piercing a sense of professional armor to educate me. Their personal stories resulted in a series of ah-ha moments that improved the effectiveness of my work, increased my compassion, and strengthened my faith in humanity. Some of them have allowed me to share those stories.
During the 70’s, Jay went to one of the most prestigious high schools in Michigan. He quickly completed college and started a career in social work. He came from a large, close-knit family who were active in their church and community. He married his high school sweetheart and had two beautiful children.
Even during high school, Jay had struggled with issues that later caused major problems. His weight varied and he often felt fat. He found ways to control his weight but it eventually led to using illegal drugs that he hid from his family and friends. He suppressed his feelings of attraction for other men. Being gay was unacceptable within his family, church, and community. He thought marriage would control his same sex attraction, but instead engaged in anonymous sex that led to internalized homophobia that escalated his drug use.
Jay accepted that he was gay after eight years of marriage. His ex-wife and family accepted and supported him while he and his family experienced rejection from their acceptance. Diagnosed with HIV in the late 80’s, Jay entered substance use treatment and became a strong advocate and organizer on behalf of people living with HIV. Again, he and his family endured whispers and alienation because of his HIV diagnosis and admitted drug use. He completed a graduate program magnum cum laude. He was always open to scientific, ethical, political discussion and able to see the other side.
Jay experienced stigma and discrimination. He felt that HIV activists were ignoring class and racial issues as the face of HIV changed. This alienated him from other activists.
Sara, from the Caribbean, was diagnosed with HIV as she prepared to enter a Michigan university graduate program. As with many who receive a positive HIV diagnosis, she experienced a long period of denial. She had seen many people with HIV and they were sick; she had no illnesses and no symptoms. When she allowed herself to think about it, she was convinced that the key to her continued health was to remain in the United States.
She also felt that she could not have the disease. She felt shame. She knew if she told anyone she would be judged negatively. She and her friends had often gossiped about “those women.” Women that got HIV were either prostitutes or promiscuous. She lived in isolation with the fear that someone would discover her secret. For many years, she avoided medical care afraid that someone she knew would see her going to one of those kinds of doctors. Until 2010, the U.S. did not allow foreigners diagnosed with HIV to enter the country. She avoided her family, afraid of returning home even for her grandmother’s funeral because she would not be able to return to the U.S. If she could not return, she would not be able to finish her graduate program or continue the life-saving medications that were not available in her country.
James talked about his family. Drug use was acceptable in his family as long as the criminal justice system was not involved. His dad was an injection drug user. His grandparents were alcoholics.
James started drinking when he was twelve at family gatherings with his cousins. Before he dropped out of high school, he began experimenting with other drugs—prescription drugs his friends stole from their parents. He became addicted, but had no way to get prescriptions on his own. Heroin became a cheap way to get high, but heroin came with other costs. As with many first time users, James shared needles and other injection drug paraphernalia with people that helped him get heroin. Unemployed, he began to steal from his family and friends to support his habit. James was arrested for breaking and entering into the house of a friend’s parent. The courts offered him probation, a fine, and a chance to enter substance abuse treatment.
He did not feel he had an addiction problem, but agreed to enter treatment to avoid jail. His family was livid. How dare he admit he was a drug addict and embarrass the family—this from three-generations of people with substance use disorder. James felt his family thought it was okay to use drugs as long as you did not admit it was a problem.
His family does not support his decision to enter treatment. They look at his recovery efforts as a negative judgment and rejection of them. He is worried when he goes home, they will encourage him to use. He is not sure how he can live without a job unless he goes home.
James chose not to be tested for HIV. He says he only shared needles with people he knew from his small community. He feels that HIV infection is something that happens in big cities. He uses condoms most of the time, except for people he knows. James does not believe that almost 20% of people living with HIV do not know they are infected because they never test.
Deborah glided into the room of young people at an early 1990’s youth conference. She was gorgeous, statuesque, and sophisticated. She talked about her move from southeast Michigan to New York City. At that time, most Americans thought HIV was a gay disease.
Deborah partnered with a man with the same interests, professional standing and creative bent. He became ill and required emergency hospitalization. Doctors suggested she get tested for HIV. She would not be tested. Why should she, her man was not gay.
When he died, a number of his friends approached her at the funeral and said we tried to encourage him to tell you. She realized then that they all knew that he had HIV, but no one had told her.
Deborah told her story well before we had effective combination therapy. At that time, there was only one drug available for HIV treatment.
We often hear judgmental statements when doing educational sessions—she/he was a prostitute, they used drugs, they were gay, they did not listen to their parents, they chose a certain lifestyle. We do not hear the understory. She was a victim of childhood sexual assault, they had undiagnosed mental illness that resulted in deadly self-medication, she experienced gender power imbalance; they had to beg the courts for substance abuse treatment placement; there are few mental health resources for the indigent; there is self-hatred, etc. We do not hear about the women and men who thought they were in monogamous relationships or that did not know that their partners were using drugs.
We must go beyond the surface and accept community responsibility to prevent continued HIV infection. We must get educated, get tested, and provide support. Continued stigma and fear help drive this disease.
The following agencies provide:
- Services for people living with HIV/AIDS
- Free, anonymous HIV counseling, testing, and referral services
- Training and education for clients and providers of substance abuse treatment services
Community education and skill building
Lansing Area Aids Network (LAAN)
913 W. Holmes Rd., Suite 115
Lansing, MI 48910
Serving: Ingham, Clinton, Eaton, Montcalm, Gratiot, Ionia, Lenawee, Jackson counties based on funding source.
HIV/AIDS Resource Center
3075 Clark Road, Suite 203
Ypsilanti, MI 48197
(800) 578 2300
(734) 572 9355
Jackson, MI Service Office
211 W Ganson St
Jackson, MI 49201
(517) 780-3262 phone
Serving: Washtenaw, Jackson, Livingston and Lenawee
Community AIDS Resource and Education Services (CARES)
629 Pioneer St # 200
Kalamazoo, MI 49008-1860
Benton Harbor 185 E. Main St. Suite 604
Benton Harbor, MI 49022
(269) 927-2437 or
Saint Mary’s Advanced Specialty Care
McAuley Health Center
310 Lafayette SE, Suite 410
Grand Rapids, MI 49503
Phone: 616-913-8300 or
TOLL FREE: (888) 800-7010