All members of the LGBTQ communities, and our allies, are long-term survivors of HIV/AIDS. The roles that each of us has played during the three-and-a-half decades of the crisis have shaped the course of our lives, the components of our personalities and the contexts of our relationships. The impact has affected each of us as individuals and collectively as a community.
Early on, some feared that communities would disappear, that so many would die that our culture and history would be lost. Far too many in our communities did die. And indeed, too much was lost.
All of our communities did survive and emerged stronger. Social, medical, financial and political support structures, unimagined at the beginning of the 1980s, now exist in large part because of our response to the AIDS crisis. Our culture has broadened and become richer. Our history has grown exponentially and become more important.
As a community, our long-term survival has demonstrated our vitality, our resilience, our interdependence and our connectedness. As individuals, our long-term survival has demonstrated our courage, compassion and a complex network of personal relationships that helped us through those darkest of times.
All members of our communities, whether infected with the virus or not, are long-term survivors. Survivors who were not infected included spouses, family members, friends, caregivers, service providers, advocates, activists and so many others. They have all been changed and shaped by the epidemic.
The array of issues resulting from their experiences throughout the epidemic has altered their lives. The loss, the guilt, the fear, the joy, the success, the helplessness and the rage: The impact cannot be ignored and should not be denied. Rather, it should be embraced, discussed and understood. No individual has escaped the epidemic, and the history of its impact on all members of our communities should be recognized, recorded and remembered. For the emotional health of all in our communities, the effects should be addressed.
Those long-term survivors who are infected with the virus face the same issues and, obviously, many more. Compromised immune systems and side effects of life-saving medications cause known, and some still unknown, damage. Decade after decade, the impact grows and manifests itself physically, psychologically, emotionally, financially, socially and spiritually. While life may not have been cut short for these individuals, for many it has been shattered.
The cost of long-term survival for some is permanent physical impairment and pain. For some, the cost is a financial burden that challenges their quality of life. For some, the cost is a constant, crushing sense of fear and loss that saps whatever joy survival might otherwise be expected to bring. And for some, it brings discrimination, stigma, isolation and loneliness.
But the remarkable fight against HIV/AIDS, against the establishment’s inaction and indifference, has produced a stirring, life-affirming alternate reality for many long-term survivors, infected or not. We have all been significantly and permanently changed by the disease and the crisis it caused. We all now benefit from the structures that were built to deal with the crisis in our communities. We all now benefit from the knowledge and experience that we gained in fighting the disease and in fighting the society that allowed it to grow into the global calamity that it became.
Because of those fights, we have made major strides toward visibility and equality that would have taken decades longer to achieve.
To help assess and address those impacts for LGBTQ older adults, the LGBT Elder Initiative (LGBTEI) has, for several years, focused attention on the unique issues and challenges facing LGBTQ older adults. During the coming year, the LGBTEI will expand its education, information dissemination and referral efforts to better meet the evolving needs of LGBTQ long-term survivors. The EI’s efforts will include a series of community forums and networking opportunities called “HIV & Aging Updates.” The series will address issues including medical care, relationships, disclosure and financial stability.
The first program in this series will be held Dec. 5 at the Center in the Park at 5818 Germantown Ave. “HIV & Aging: Improving Health and Wellness” will cover strategies to better manage health issues and improve medication adherence and safety. All “HIV & Aging Updates” are free and open to the public and are sponsored by the City’s AIDS Activities Coordinating Office (AACO) and Philadelphia Gay News. For more information, or to register for this program, please call the LGBTEI at 215-720-9415 or write to [email protected].
Ed Bomba is a volunteer with the LGBT Elder Initiative. You can visit the LGBTEI at www.lgbtei.org.