The latest edition of the journal, Achieve, is devoted to HIV over fifty. I contributed on stigma entitled: Managing the Triple Threat: Strategies for Older Gay Men with HIV. Here is the link to the publications page where you can download volume 7, number 3.
The Journal of Gerontological Social Work is publishing an article I’ve written entitled “A Shrinking Kind of Life: Gay Men’s Experience of Aging with HIV.”
Here is the abstract:
More people are living with HIV into midlife and older age. Although increased longevity brings new hope, it also raises unanticipated challenges—especially for gay men who never thought they would live into middle and older age. Middle-aged and older people are more likely to face multiple comorbidities, yet many lack the necessary supports to help them adapt to the challenges of aging with HIV. This article presents the findings of a qualitative study developed to explore gay men’s experience of aging with HIV. Multiple in-depth exploratory interviews were conducted with 15 gay-identified men living with HIV/AIDS over an 18-month period. A systematic strategy data analysis consistent with grounded theory revealed a pattern of subtle adjustments to living with HIV that resulted in diminishing circles of social support and social involvement. This dynamic is referred to as “a shrinking kind of life,” an in-vivo code built from the participant’s own words. Four themes from the research (physical challenges, a magnitude of loss, internal changes, & stigma) are discussed. Conclusions include recommendations for future research and implications for practice in the field. Practitioners knowledgeable of the factors that impact their social involvement can empower gay men through individual and group interventions to confront a shrinking kind of life and define for themselves what it means to optimally age with HIV.
Taylor and Francis has given me 50 free downloads. Just click on the link above to access the full article.
The night of the SCOTUS rulings on DOMA and Prop 8, my husband and I celebrated with dinner at Brooklyn Fish Camp, the restaurant we stumbled giddily into after filing for domestic partnership in 2007. (We subsequently married in San Francisco during the window period of 2008.) Announcing our federally married bliss we struck up a conversation with other diners seated at the bar. As a straight couple quietly exited our waitress told us that they had paid our bill. We caught them and had a nearly wordless exchange, the two of us trying to express our gratitude while she with tears in her eyes conveyed her deep understanding of the day’s significance. Stunned by their generosity we neglected to ask their names. For two middle-aged gay men so accustomed to defending the legitimacy of our love, the evening confirmed that we will need time to adapt to the realities of acceptance.
I wanted to acquaint you with a new resource for gay and lesbian aging that I am personally very excited about. According to their website: “The National Resource Center on LGBT Aging is the country’s first and only technical assistance resource center aimed at improving the quality of services and supports offered to lesbian, gay, bisexual and transgender (LGBT) older adults. Established in 2010 through a federal grant from the U.S. Department of Health and Human Services, the National Resource Center on LGBT Aging provides training, technical assistance and educational resources to aging providers, LGBT organizations and LGBT older adults.
It is truly remarkable that the US government is funding a program geared to improving the services and supports of the LGBT aging community. I have worked in this field for decades am encouraged by this sign of support for what has historically been an underserved community.
I have been told by the organization leadership that they intend to develop programs for the HIV positive aging community, and I will be submitting an article to appear on their website. Currently they have articles and resources of interest to the LGBT aging community on their website.
On June 24th the New York State legislature passed a bill legalizing marriage for same sex couples. This was a momentous occasion for New Yorkers, of which I am one. The gay pride parade, held the next day, was the largest attended in its history, and everyone I spoke to agreed that the tone of the day was exuberant throughout.
On the day of the event, my mind took me back to another human rights advance in the City’s history – the passage of New York City’s gay and lesbian rights bill in 1986. The law protected gay and lesbian New Yorkers from discrimination for the first time in the city’s history.
I was a 19-year-old student at NYU. Our gay and lesbian student union was very involved in the issue. I remember we had been at an event the day before and stayed up late that night making posters for people attending the vote. The next morning, I was assigned to “person” the phone in the office. When I arrived I found that our officers had spent the night. So, I made them coffee and sent them on their way. I got the usual calls during the day – students asking about our programs or wanting to talk to someone about coming out. And, then I got the call: “We won!” It was so exciting. Even though I was in the office, I felt as though I was part of something really big. And, later that day the New York Times had a photo of the students from the NYU gay and lesbian union on the front cover of the paper.
I remember my parents talking about where they were when Kennedy was shot and what they were doing during other major events of their youth. For me, the passage of the NYC gay and lesbian rights bill was that event. I saw, first hand, the power of activism. My rights, and the rights of people like me mattered. And, it changed me. I felt a little prouder.
Yes, the passage of the same sex marriage bill in New York State is an important human rights victory. LGBT people deserve full equality under the law. The right to marry is an integral step in the promotion of equal rights for all.
But, it is also something more. It is a message to LGBT people everywhere that we matter. That the fight against homophobia in society, and the struggle that many of us must continue against the homophobia internalized within ourselves, is a worthy battle. Each step we take, whether it is a victory or a set-back, reminds us that we are worth fighting for.
People wished me “Happy Pride” all that week. And, I feel it. I am a little bit prouder, now.
In yesterday’s New York Times, columnist Roni Caryn Rabin reported on the results of the California Health Interview Survey. The study, conducted by the by the Center for Health Policy Research at the University of California, Los Angeles, presented alarming statistics about the health of the aging LGBT community in California.
Among the statistics reported on gay men’s health and aging were the following: “Older gay and bisexual men — ages 50 to 70 — reported higher rates of, and physical disability than similar heterosexual men. Older gay and bisexual men also were 45 percent more likely to report psychological distress and 50 percent more likely to rate their health as fair or poor. In addition, one in five gay men in California was living with infection, the researchers found. Yet half of older gay and bisexual men lived alone, compared with 13.4 percent of older heterosexual men.”
Reading this article, I was once again reminded of my early career as a social worker in the field of LGBT aging. In the 1990s I was one of a team of clinicians who presented similar statistics to service providers in order to change public policy and advocate for LGBT sensitivity in programs for the elderly. We were invited to senior centers and other agencies to teach providers how to adequately care for their LGBT clients, and much of our work involved explaining how the stigma of homosexuality impacted that generation of seniors and how agencies need to assess their programs to root out ways they perpetuate that stigma.
We shared our clients’ histories of discrimination – how they had been rejected by families, fired from jobs, dishonorably discharged from the military, harassed, evicted from apartments, beaten, arrested, and institutionalized just for being gay. We talked about the effect this stigma could have had on their self-esteem. How many had to hide their sexuality and create dual lives.
We demonstrated how stigma can lead to shame and low self-esteem, and how many people react to being labeled “deviant” by hurting themselves through neglect and self-destructive behavior.
And, we stated that while things had changed during their lifetime, discrimination was still a reality in the lives of LGBT seniors. Their sexuality was not represented, and often shunned, at the very agencies in which we were invited to speak. The conclusion – “Given their histories of stigma, it is understandable that many of our clients are distrustful of health care providers. It is the service providers’ responsibility to earn the trust of LGBT seniors.”
Our model of service provision came from the clients we served. I had heard many stories of resilience from LGBT seniors, and these people helped me figure out how sensitivity and empowerment can be used to help others who had experienced lifetimes of homophobic oppression.
Reading the New York Times article I was saddened, but not surprised. I had hoped that things had gotten better in the last two decades. That this generation of LGBT elders had not experienced the same health-damaging effects of stigma. And, that service providers had learned to eliminate the barriers that prevent people in the LGBT community from getting the care that they need. But, these statistics show that these problems persist.
While researching Aging with HIV: A Gay Man’s Guide, I interviewed men who shared stories of discrimination. They told how stigma affected their self-esteem and self care. They also demonstrated resilience in the face of homophobic discrimination, how they had built on their strengths, sought out support from the community, and developed strategies to empower themselves and others.
There are many challenges of aging, but for gay men living with HIV they are compounded by the realities of homophobia and AIDS stigma. I hope the release of these new findings encourage a conversation to find new ways to fight stigma and improve the health and well-being of the aging LGBT community.
Follow the link to read the NY Times article.
I am pleased to tell you about a group that I will be running with a colleague in the Village.
The focus of the group is gay men and midlife. For the generation of gay men now facing mid-life the AIDS epidemic shaped young adulthood. Gay identity was defined by the emergence of AIDS and young gay men were faced with the tasks of caring for loved ones, grieving, creating community and learning how to care for oneself in the face of homophobia and discrimination.
For this generation of gay men, the fact of being in mid-life is to have survived. It may helpful to reassess their coping strategies in order to meaningfully respond to changes in careers, relationships, bodies and sex lives that accompany aging. This group will allow its members to reflect, reassess and address questions such as:
What does it mean to be a middle-aged gay man now?
What wisdom have we achieved and what coping strategies have we developed in order to arrive at this place?
How has my earlier experience with AIDS and HIV affected my view of myself and aging?
What new strategies and skills do we need?
This 12 week group should prove to be a rich and rewarding opportunity to connect, receive support, learn from shared experiences, draw on past lessons and achieve new understanding.
If you are interested, or know of someone for whom such a group would be helpful, you can contact me at this link, or by using the “Dr. James” tab, above:
A reader, Loren M., recently completed a course on public policy in Aging with HIV at San Francisco State University, Gerontology program. He has researched the issues around Aging with HIV, and has shared the result of his studies. For a report on Aging with HIV Policy go to my post – Aging with HIV Goes to the White House and read his comment.
Thanks Loren M. for sending that information to us!
Just a reminder that I will be presenting on Aging with HIV with Dr. Steven Karpiak of ACRIA at the SAGE National Constituent Conference this Saturday, November 13th. I’m glad to be a part of this hands-on conference. It should be an empowering experience.
- Thought-provoking workshops and plenary sessions on a wide range of topics that affect LGBT older adults, such as self-advocacy and empowerment, health and wellness, aging and ageism, and caregiving;
- Renowned speakers from across the LGBT and aging fields;
- Free clinics where you can get advice from experts on the legal, financial, health and financial issues that directly impact your life;
- Special documentary film screenings;
- Opportunities to network with colleagues from across the country;
- And much, much more!
Thank you for including me in your blog posting on Aging with HIV for MyFabulousDisease.com. Your site is a perfect forum for this timely dialogue.
In your note you asked several questions about the physical complications of aging with HIV and the emotional interaction between living with HIV and aging into midlife and beyond. Both, are very big subjects. And, while there is growing interest in this area, we are just beginning to understand what it means to age with HIV. We are at the forefront of a new era in HIV treatment, and much like the early days of the epidemic, people living with the virus are the experts and have to keep updated on new developments and partner with their doctors in order to determine the best course of action.
This is the reason why I wrote Aging with HIV: A Gay Man’s Guide – to help gay men who have lived longer than they ever expected as they manage the transition of aging.
The literature presents several emotional challenges that accompany adult development. They include, among others, physical changes, new roles in the family, and shifts in our work lives. For gay men living with HIV adaptation to aging also involves responding to changes in the AIDS epidemic and the transition of HIV from a terminal illness to a chronic disease.
Aging is a challenge for all of us. But, for gay men living with HIV it is even more complex. As you know, this generation of gay men living with HIV have spent the last two decades embroiled in a battle with the AIDS epidemic: Caring for themselves and loved ones; living through immeasurable losses; and managing their own threat of mortality. This war has utilized all their emotional resources and few have had the time to consider the challenge of aging.
It is easy to get stuck in the task of adapting to aging with HIV. Signs of stagnation include living in the past, isolating, and avoiding social involvement. Research has found higher rates of depression, lack of social support, and reduced quality of life among middle aged and older people living with HIV. Adapting to aging with HIV can become complicated when emotional issues such as HIV-stigma, internalized ageism, unresolved grief, or survivor guilt impact one’s ability to care for oneself fully in the present.
Aging with HIV: A Gay Man’s Guide offers guidance to navigate this uncharted territory. The book draws from my qualitative research, as well as my training as a psychotherapist and 20 years of experience in the field. Questions and exercises guide the reader through self-examination to evaluate how he is adapting to the challenges of aging with HIV and to develop tools to optimize their experience. There are quotes from gay men living with HIV, as well as brief text boxes that review the relevant research. The book also includes a chapter by James Schmidtberger, MD, Director of the Leicht Clinic, an HIV-clinic in New York City, reviewing the medical research on HIV over fifty.
My hope is that Aging with HIV: A Gay Man’s Guide will start conversations across the country that normalize the experience of aging and empower gay men to define for themselves what it means to optimally age with HIV.