The Age of LGBT Aging (Keynote address from TransFaith in Color 2011 national conference)
July 2011 | Robert Espinoza
Editor's Note: The following keynote address was delivered on July 26, 2011 at the opening luncheon of the TransFaith in Color 2011 Conference in Charlotte, North Carolina. The conference was hosted by the Freedom Center for Social Justice. Additionally, this speech was posted on the web site for Southerners on New Ground (SONG).
It is estimated that every six seconds, someone in this country will turn 50, and every eight seconds, someone will turn 65. In fact, if the statisticians are correct, this clock-like aging of our country will mean that the number of older people in the U.S. will more than double over the next two decades to more than 80 million elders. It is unprecedented, referred to by some as "the graying of America," a phenomenon largely explained by the retirement of a very large Baby Boomer generation.
But for those of us who work in the aging field with an eye toward social justice, it is only one frame on a much broader aging narrative. We are also witnessing the aging of transgender, lesbian, gay and bisexual older people in large numbers. And we are also seeing the first generation of people to age with HIV/AIDS—due in part to the success of highly active anti-retroviral therapies introduced in the mid-1990s. Finally, our country continues to become increasingly more racially and ethnically diverse, enriched and sustained by the contributions of communities of color and immigrants from all parts of the world.
What this means is that over the next few decades, our communities who have been historically underserved, marginalized and often politically targeted will together represent the majority of older people in this country. And with it—leave no doubt—will come an increased resistance from our opponents. We are seeing it right now—as we meet at this conference—in the hostile Congressional conversations on the debt ceiling and our national deficit, in the ways in which our country's strongest safety net programs from Medicaid to Medicare to Social Security are now under increased attack.
The graying of America, then, must not be understood solely as a demographic phenomenon. It must be understood as a paradigm shift that will test how our country deals with our most marginalized people. It's on this issue that I would like to pose three questions to inform this conversation.
First, is our country's aging network—the broad system of aging providers, health and social service professionals, community-based organizations, churches and houses of worship, and direct care workers—prepared and resourced to deal with our growth in numbers?
Second, are government leaders grappling with the right questions? Or worse, are they targeting the very system that's meant to protect us as we age at the exact moment in which our communities transition into the majority?
And, third, have we created the necessary political infrastructure, which includes communities of faith, to imagine a healthy aging reality for our elders, and for ourselves? Is it sustainable? And will it tackle one of the most devastating economic recessions in recent history? Will it challenge the most vicious, political opponents, or policy experiments, of this era?
Poet Adrienne Rich wrote: It's exhilarating to be alive in a time of awakening consciousness; it can also be confusing, disorienting, and painful.
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I oversee the national advocacy efforts for SAGE, Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders, the country's largest and oldest organization dedicated to improving the lives of LGBT older adults. These questions underscore the work that we do across the country every day.
In Texas, an older gay man is moved against his will by his children all the way to St. Louis, separated from his partner of 22 years, and filed anonymously in a nursing facility so that his partner can never locate him. Across the country, transgender elders report harassment by hospital staff and by nursing home staff—denied answers to the most basic of requests. In central Louisiana, a 45-year-old man and his partner—both HIV-positive—serve as the sole caregivers of an 84-year-old gay man who lives an hour away, and who came out in his 60s, only to watch his entire family up and leave. In California, one of SAGE's national Latino partner organizations reports countless incidents of area agencies on aging refusing services to Spanish-speaking elders and then reporting them for deportation. And in New York City, an older woman's partner passes away, and because she lacks the proper paperwork as a domestic partner, and has no other tenant protections, she loses their shared home and becomes homeless overnight.
Yet while each of these stories is unique in the lives they have affected, they are not out of the ordinary. We find that LGBT older adults are more likely to be single, without children and many are estranged from biological family members. If 80 percent of long-term care in this country is offered by biological family, it means that many of our elders live isolated and rely on friends, caregivers and eventually the formal aging system. Yet elders often report going back into "the closet" at that point for fear of discrimination—and many who don't reenter the closet (or who are unable to reenter the closet because they were never in it), report rampant verbal harassment, abuse and discrimination by aging and health professionals.
A lifetime of discrimination will add up in our bodies and in our minds as we age, and the effects are measured. LGBT people—and especially LGBT people of color—experience high rates of depression, suicidal thoughts, and alcohol abuse, all of which magnify as we get older. Yet LGBT elders are more likely to delay care for fear of encountering discrimination, and are less likely to be screened appropriately by medical providers who do not understand them as gay men, as lesbians, as transgender people, or who assume older people have no sexualities, as reported by experts in the HIV field.
And if a history of structural racism has arranged our country into cities and regions so that communities of color are more likely to be concentrated in areas with fewer resources, including health and aging services, and if undocumented immigrants are increasingly denied these services, then it means that the health care options for LGBT elders of color are fewer—and the health outcomes are worse. The existing research shows this over and over: the worst health outcomes reported in our communities are often experienced by poor and low-income transgender people of color.
SAGE's growing body of work with transgender elders around the country reveals the subtext behind these outcomes. Transgender elders routinely report incompetence, negligence, prejudice and discrimination in both health care and aging settings by staff and by their fellow residents. As documented in this year's groundbreaking transgender discrimination report led by the National Center for Transgender Equality and the National Gay and Lesbian Task Force, this can mean that a transgender person often experiences longer wait times, even physical assault, while trying to access basic medical care. Someone who fears discrimination might delay visiting a doctor, which can mean that illness goes undetected and gradually intensifies. Or it means that the prohibitive costs of health care, and the general lack of insurance coverage or underinsurance, means than many transgender elders—many poor and low-income people of all ages—have no health care options, no primary care doctors, and are more likely to rely on emergency room for health care, usually when crisis hits.
We also know that aging providers rarely offer cultural competence training and do little outreach to transgender clients. Transgender elders report incidents of staff refusing to call them by their preferred pronouns and report a general fear of being discovered as transgender and the abuse that might follow. With smaller support systems, an incident of discrimination will likely go unheard and be left unaddressed, with no one to advocate on our behalf. This places many transgender elders at risk of elder abuse, including financial exploitation.
If our health system were to begin adequately addressing the unique health needs of transgender elders, they would unfortunately have little research on which to base their practices. Transgender people—especially elders and people of color—are rarely studied for their realities, their unique health and psychosocial needs, or the types of health interventions that might work to improve health and a general quality of life. Data collection efforts in both the public and private sectors rarely include questions related to gender identify and expression (and when they do, the subgroup samples on older people are thin). To date, there exists no large-scale study on the health needs of transgender elders. We know almost nothing about the long-term effects of hormone therapy or transition-related surgery, especially at a later life, when surgery is riskier, hormone levels usually drop, and many elders take multiple medications.
This broad disregard for transgender aging issues resembles the area of HIV/AIDS, which disproportionately affects transgender people and elders. Two weeks ago, SAGE met with various policy leaders in Washington, DC to discuss the general lack of support for older adults with HIV, many of whom are men who have sex with men, transgender, people of color, and struggling with poverty. Likewise: there is insufficient research on the physical effects of living and aging with HIV and highly-active anti-retroviral therapies; there have been no national studies on older adults with HIV; few if any HIV prevention marketing programs ever target older people; and HIV and aging is virtually absent from major legislation or strategies affecting this population, from the Older Americans Act, which is the largest provider of older adult services, to the Ryan White Care Act, which is the largest funder of HIV/AIDS services, to the recently released National HIV/AIDS Strategy under the Obama administration. You would never guess that in a few years, one in two people with HIV will be 50 or older; or that older adults are more likely to be dually diagnosed with HIV and AIDS, meaning that they have often been living with it for years, as the illness has progressed in their bodies; or that infections are on the rise among older people, some of whom come out later in life and report feeling immune to infection. "Silence equals deaths," said the ACT UP slogan for in the early AIDS movement in the 1980s—and the silence on this aging issue is deafening.
What, then, must be done? What is our responsibility? Where do we even begin?
First, we must prioritize aging in the work that's taking place in our communities—whether it's community building, activism, direct services, training and capacity building, research or advocacy. The magnitude of this issue, and sheer numbers of our populations, requires an appropriate response in size.
We must also challenge the popular mindset that older people cannot be advocates on their own behalf, and that all elders require is mere treatment or services. We must create the political platforms where they—and eventually all of us—can advocate on our own behalf as older people.
Our responses to these concerns must also be inter-generational, they must tap into the resilience and wisdom of elders at the same time that we draw on the leadership of younger people, or people of all ages. On one level, this would mean that the leadership, experience and historical memory among elders are preserved—or debated and refined where appropriate. But it would also acknowledge that movements evolve, ideas expire, and new responses emerge to challenge the traditional paradigms. And that's a good thing. Generational differences need not be placed in opposition to one another—they must be in dialogue.
We must also form the types of coalitions that transcend the issue silos, the destructive single issue politics, the "my-issue-is-more-important-than-yours" mentality. These types of coalitions broaden both our understanding and our responses to some of the most difficult questions of our time. For example, SAGE has been working with six national people of color aging organizations to focus federal attention on our collective communities. The themes that have emerged through this work—the broader "problem," if you will—include economic hardship, discrimination across the lifespan, systemic underfunding, cultural incompetence and a reliance on family, broadly defined.
We must be bold, tease the edges of our mission statements, provoke where necessary. SAGE is also on the steering committee of the Caring Across Generations campaign, led by the National Domestic Workers Alliance and Jobs with Justice, as part of an effort to enact legislation that would create millions of well-paid jobs in direct care work, enforce labor standards for hundreds of thousands of direct care workers—many of whom are immigrants and women of color—provide a path to legalization, and career opportunities so that economic uplift becomes a reality. The premise here is that the aging movement, or the LGBT movement, or however we construct our movement affinities, need not divorce themselves from the broader political left. In fact, we must position ourselves at its center and commit to co-lead these struggles for racial, economic and gender justice.
Finally, we must devote focused resources and attention to issues that have been rendered invisible for a number of unconscionable reasons. In late June, SAGE and the National Center for Transgender Equality brought together 15 trans aging leaders from various disciplines—including the Freedom Center for Social Justice—to ask: what can we do to begin ensuring that transgender and gender non-conforming older adults age successfully, with broad community support, free of discrimination, and financially secure? Whether by focusing on policies related to long-term care agencies, or the ways in which Medicare can better cover the full costs of transition-related surgery, or how the broader network of aging agencies nationwide can better serve transgender elders—the policy responses are plentiful. And as we can all attest: they are nothing less than urgent.
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Nearly two thousand miles away, in the northern part of Colorado, my parents are aging rapidly and grappling with the implications of nearing their deaths. My father is 76 years old, an indigenous, dark-skinned Latino who grew up poor in a segregated part of Southern Colorado in the 1930s and 1940s. Through his boyhood, he remembers signs that relegated Mexicans to separate public spaces. With no other financial options, he entered the military in 1952 and survived both the Korean War and the Vietnam War. Though he carried with him—and imposed on us, his family—the post-traumatic stress and violence of that experience in the decades that followed. Today, at 76 years old, he works night shifts as a security guard to temper the chaos in his head, and to earn the disposable income that he and my mother still rely on. He has been a loud-spoken atheist since I can remember even knowing what faith, religion and atheism denoted.
In contrast, my mother is 71, a Mexican immigrant from Leon, Guanajuato who came to the U.S. in the mid 1960s to escape persistent sexual assault, an impossibly poor life and… because she wanted to. She is a devout Catholic; she rejects the angry, reactionary aspects of the Church; and she prays every morning and night. She has prayed nonstop through each near death experience she and my father have had in the last six years. She is also a prolific poet, having published dozens of poems, including a book of collected poems in Mexico, throughout the 1980s and 1990s. I read these poems as meditations on loss, about living in between cultures, about migration and its costs, about her family, here and abroad, and about her own ever-changing relationship to her sense of God.
In the last four months, their health has deteriorated. My mother's kidneys are failing; she is obese and barely mobile; she doesn't have the focus or the hand agility to write the poems that have sustained her for her entire life or to read in depth the religious texts that once provided comfort. She sleeps more every day. Our family members from Mexico have been visiting her this year, one by one, over the months, as if in ritual.
My father, who prided himself on his physical and mental health for most of my life, has almost no hearing, and this year lost his eyesight in one eye. He will soon give up driving. He fears blindness; he fears what he will be forced to see when all he can see are memories. His job will soon end and the significant caregiving support he offers my mother will end as well.
Their support system is a network of friends—mostly Latino immigrants whom they have befriended over the years, or working class neighbors who live on their block. These are large families of young and older, people who bring food, and friendship, and breathe life into their daily existence. People whose very actions and presence confirm for my mother the faith she still needs. And they offer my father the debate he craves in order to preserve his disbelief. My sister, a single mother, has served as their caregiver over the years, and I observe the wear in her eyes whenever I visit. I support however I can from afar. My parents worry I will have no one when I become much older, or that I will be murdered in an unspeakable hate crime that they have become too good at describing. And if they heard the stories I encounter through my work, they would worry even more. I live in Brooklyn, and I wrestle with all the questions that occupy those of us who have left home in search of another. I have no answers or process for clarity. I have no defined faith. I have only questions, a love of mystery and an activist calling.
Some of my friends would tell me the theme here is community and support; we have always been our best supports as marginalized people—how else would the lucky among us have made it? Find me a social justice movement, and you'll find the most beautiful caretakers among them. Other friends would say my parents deserve more. They would point to the state of home-based care, the need for supporting all of us as we age, become disabled and insist—as the disability rights movement has long argued—to "age in place" and not necessarily be institutionalized. And others would ask whether my parents—Latinos, working class, Spanish-speaking and immigrants—would even find quality care in their communities; whether it would be culturally and linguistically appropriate; whether it would be affordable. Or is the issue deeper, my most philosopher and spiritual of friends would question: What happens when we come to an end? How should that inevitably transpire? How should a culture prepare?
For me, the theme these days feels very different. For me, the theme is inspired by my mother, a poet, who taught me always to locate the precise word, to merge craft with emotion, to live by risk and discipline, to end the story in the necessary unfolding of the next one. Illuminate but never answer, she taught me. And I think it's how she sees her faith.
For me, the theme is family. When we don't protect elders and invest in elder leadership, we dishonor all that came before us. We become ahistorical. When we don't focus our attention on aging services and supports, we destabilize not just elder lives but the entire family unit, because we still take care of each other—and the costs are financial and emotional on all of us as children, extended family, partners, friends and caregivers. And when families are understood only as biological supports, or spouses, we misname the ways that many of us, if not all of us, have organized ourselves out of necessity, and in the pursuit of justice and joy. And when we posit these simplistic binaries—religious or secular, male or female, biological or chosen—we forget that our lives are more nuanced, inherently multi-faceted—shaped by something larger than all of us, call it what you will—than any quick categorization will describe.
My mother, the religious poet, falls asleep nightly to scripture. My father, the moody atheist, lays awake all night in wonder. They have aged, and they will soon pass away, I know. They are—at the end of all of this—each other's notion of faith and family. And I have found myself somehow, at this point, through career trajectory or fate, the queer son, working on justice for our aging communities. My parents have shared a bed for more than forty years. They wake up every morning together. And they wait.
Robert Espinoza is the Senior Director of Policy and Communications at SAGE (Services and Advocacy for GLBT Elders) in New York City. He can be reached at firstname.lastname@example.org.