THE BLOG

Growing Older and Facing Loss as LGBT People: A Question of Care

03/23/2015 09:39 am ET | Updated Feb 02, 2016

When writing about aging among lesbian, gay, bisexual and transgender (LGBT) people, reporters typically invoke one of two narratives. The first involves an older same-sex couple, congenial and photogenic, seemingly monogamous and coupled for decades, denied only the legal right to marry. The second narrative depicts an isolated, frail older person whose life has spiraled following a destabilizing life event. Despite their monochromatic nature, these stories are deeply human. At their core, they embody the polarities, both romantic and tragic, that shape and scar many of us over the course of our lives, revealing deeply held aspirations of belonging, affirmation, security and survival.

But there’s also something problematic at play about these narratives, as written. Too often, these reporters will omit the historical context and underplay the factors that led to an elder’s decline: the opportunities they were denied since birth; the economic and racialized conditions of the neighborhoods in which they were born or where they spend their oldest years; and all the factors that operate in ways undetectable, beyond a person’s rational choices.

Moreover, these twin narratives function in a landscape where the media rarely explores the full range of our lives. Yes, marriage and romantic love moves many of us, and the unfair denial of those rights has significant financial repercussions, but surely we can articulate family policy to include more than spouses and children. And while the best-written stories of human despair can illuminate the devastation of inequality, fostering empathy and public support, there’s something defeatist in the tenor of these stories when they don’t explore solutions.

More broadly, if you were to conduct an online search of “LGBT elders,” or any variation on those terms, you would find few stories that capture our experiences across housing and health care, in rural settings or as advocates for change, among other topics. You would find even fewer stories depicting LGBT elders who are people of color, transgender and/or bisexual. Without these depictions, we fail to describe why exactly the public safety net exists, where it’s torn and who repeatedly falls through it.

I marvel at the inability of news editors to see us as more than romance or tragedy, as happy couples or despairing singletons, as people who exist at one point in time, as if history has not made us, for better or for worse, or as if we haven’t made history, in all its glory. News outlets depict us as people governed by a single public policy, as if oppression is not the net result of multiple factors and institutions. We know that to age as LGBT people in all of our differences is like a symphony of sounds, calibrated to multiple notes and instruments, rumbling and ecstatic. Yet it seems the media only plays two, monotonous notes.

More importantly, why is it that the available research and experience show that LGBT older people of color and transgender elders, as two examples, face the highest levels of discrimination, yet they continue to receive marginal attention and support? One explanation is that the stories told about us as we age—in media and entertainment—willfully ignore the “full story” of who we are as diverse people and what we have inherited through history. But we also fail to articulate useful containers that can explain our commonalities while preserving our differences. At this point in history, I believe the unifying theme for LGBT aging advocates lies in our ability to respond to loss. We must imagine solutions that catch each other when we experience profound loss, and we need stories that account for our unique histories and commonalities.

In 1992, I was a high school student in southern Colorado when my state voted to pass Amendment 2, an initiative that sought to prevent any city, town or county in the state from adopting an anti-discrimination law protecting gay, lesbian and bisexual people. The next morning, my hometown newspaper, The Pueblo Chieftain, ran a front-page story featuring a skeletal, seemingly ill, effeminate man prancing alone on the steps of the county courthouse, draped in an American flag. In one swoop, this editor, photographer and the state’s voters conspired to mock the very notion that we, as LGBT people, could understand, much less claim, our legal rights. It also ridiculed gender nonconformity, femininity and people living with HIV/AIDS. At the time, I was coming to terms with my own sexuality in a Mexican, Catholic, military, immigrant family—topics for a separate discussion. But what I would experience then—and come to grips with later—is what many disenfranchised people with multiple identities learn to negotiate from a young age: I recognized parts of myself in someone else’s depiction, while knowing all that was missing and misrepresented. I internalized those messages in ways that took me decades to dispel.

If you’re LGBT and have lived through several decades, you have witnessed representations that likely distorted what you believed about yourself and what others thought you deserved. Through mass media and entertainment, engineered by the political right, LGBT people have been portrayed as predators and loners, as mentally unstable or tragic anti-heroes who bring about their own demise. We are portrayed as threats to schoolyards, the sanctity of families, religious liberties and fundamental values. We are described as oversexualized and confused, too often rendered in ways cartoonish and one-dimensional. As with the topic of race and racism in the public discourse, it seems that too often we are either hyper-visible or simply invisible as LGBT people, especially those of us at the margins. This makes no sense, given the changing demographics of this country. For example, though people of color will make up 57 percent of the U.S. population by 2060, a recent media analysis by GLAAD found that we make up only 26 percent of LGBT-identified characters on mainstream broadcast networks. And though transgender and bisexual representations have emerged slowly in recent years (with varying levels of success or offensiveness, depending on your glass of water), it’s fair to say that younger, white, cisgender, gay and lesbian representations “dominate” what it means to be LGBT on prime time.

And it’s not much better for older people. Few storylines depict the challenges of aging as LGBT people, much less their resilience or historic achievements. Ageism and ableism collude in ways that continue to revere a type of beauty that’s youthful, able-bodied, unrealistic in its size and proportions, white and cisgender—and these notions castigate anyone who doesn’t fit this mold. To borrow from the disability rights field, maybe it’s the notion of “normalcy” that hurts all of us. Society upholds a certain form of “normal,” and when we don’t meet those standards, we’re seen as less worthy and treated unfairly. Worse, we inhale those standards and many of us suffocate.

Imagine if the media and entertainment fields began telling the full breadth of stories we see through our roles as advocates and practitioners in the LGBT aging field. Would the character of Frank Underwood in the Netflix series House of Cards stop trying to dismantle Social Security and focus on policy reforms that support his bisexuality, and thus the needs of millions, or at least his fluid identity and modern marital arrangement? Would White House Chief of Staff Cyrus Beene in ABC’s Scandal leverage his older gay identity to propose that the president stop pouting so that he can execute administrative reforms that improve housing security for LGBT elders, extend nondiscrimination protections across the aging and disability network, and enforce LGBT-friendly cultural competence standards for the entire long-term services and supports field? Beyond fiction, would The New York Times, the Washington Post or 60 Minutes, to name a few, devote entire segments to the caregiving crisis, the realities of aging among trans people or people with HIV, health disparities and healthcare access, elder abuse, how smaller support networks for LGBT older people shape later life, and so on?

Stories about LGBT older people should cover the full array of issues we encounter in our lives and explore the extent to which those issues affect segments of our communities differently. For example, what has been the impact of health reform on First Nations/Two-Spirit/indigenous older people? What has a legacy of structural racism done to funnel low-income people of color into the military, and how does that impact the mental health of hundreds of thousands of older LGBT veterans who are people of color? How do we study and reach more low-income transgender elders of color, given their virtual absence from most published studies? What would a policy agenda look like for immigrant LGBT elders, including undocumented immigrants? And why do so many policy and research references to “Hispanic” elders and “Asian” elders, as two categorical examples, refuse to unpack the many countries, lineages, cultures and languages subsumed by those categories?

Each of these stories should name a problem that describes the historical disadvantages we inherit that restrain the scope of any individual decision or experience. The problems described in news stories should explore multiple systems and not assume that if we “fix” one problem, the others unfurl. Older LGBT people of color might lack proper retirement savings not merely because a dominant white culture never figured out how to reach them with proper financial advice. Rather, various factors have worked in confluence to rob people of color of their incomes and assets, including a history of discrimination and higher concentrations in low-wage jobs; for generations, states, cities and neighborhoods with large percentages of people of color were underfunded and stripped of their political and economic capital. LGBT elder of colors who cannot find affordable housing have a different playing ground from which to even search for housing, not to mention the bigotry they’ll encounter when seeking housing in different markets; a discrimination lens alone will not suffice.

Most policy experts in the aging field would acknowledge that aging is not experienced equally among people, but what they often refuse to concede—as evidenced by their programs, policy stances and funding priorities—is that those differences are rooted in community-level disparities based on histories of inequality. Some of us are much more likely to age in poor health and without proper support, and we need large-scale interventions to level the playing field. 

Some of the most compelling illustrations of these large-scale reforms can be found in three current legal cases. First, the Supreme Court is hearing a case that could destabilize the Affordable Care Act; it will examine the legal basis of providing subsidies to people who purchased health insurance through the federal exchange. The Supreme Court will also rule on a second case that will determine whether states can ban same-sex marriage. Finally, in a less visible case, the U.S. Court of Appeals for the District of Columbia Circuit is considering whether to overturn a federal district judge’s ruling that the U.S. Department of Labor could not extend minimum wage and overtime protections to most home care workers. From health care to relationship recognition to the direct-care workforce, these cases have profound implications for LGBT older people. The legal right to marry carries a range of federal protections that benefit LGBT couples as they age, though a more inclusive policy framework that reaches the largely single LGBT elder population will be more useful in the long term. Millions of low-income people could lose their health benefits—and see their health deteriorate—if the Supreme Court rules against the Obama administration, including states with high percentages of people of color. Finally, the direct-care workforce is the fastest growing workforce in the country, estimated at 2 million, and improving their meager wages and protections would enhance the overall quality of care for older people and people with disabilities. Yet if one were to skim through the various amicus briefs submitted for these three cases, one would find little overlap in the organizations that lead or sign then. It’s surprising, given that we’re calling into question what constitutes the level of care that our government should offer to people with fewer resources. We’re asking: Who deserves legal recognition and support? But we’re not drawing from—or backing—each other’s “cases.”

***

The theme that occupies my mind these days is loss—everything we lose that never comes back. Every loss we experience becomes every loss we have ever experienced, all over again. When I share this theme with my friends, they either pull into the conversation, as if they see themselves reflected, or they push away, as if they see themselves refracted. It’s too gloomy or deficit-based—some will say—and we are more than what we no longer hold. Plus, they will reason, our world is rooted in groundlessness, incessant change, the destruction and weathering by both nature and industry—so why obsess about the inevitable?

But loss, I will counter, has a different tenor as we age, and for marginalized people, what we have lost has often been denied or stolen. In this sense, maybe we cherish more what we have as we get older, knowing how long it took to arrive at that point, recognizing how it all goes away regardless.

Consider that as we age, we lose our physical strength, our cognitive abilities, our relationship to the spaces around us and the mobility we once took for granted. (Here, the disability field would remind us that this happens at all points in life—hence the foremost attention to access, affordability and independence until our health and choices no longer call for it.) Loved ones move away or move on; our kinship networks dwindle; the strongest loves often dilapidate or take on other forms too skeletal or deformed to merit the maintenance. We lose our memory and, in turn, the memories. The Pulitzer-Prize winning poet Stephen Dunn writes: “One day there’ll be almost nothing / except what you’ve written down, / then only what you’ve written down well, / then little of that.”

And if your life has been shaped by marginalization and discrimination, what you’ve lost becomes entwined with what you’ve been denied. Here, the news offers persistent reminders. We are continually attacked—by strangers, by loved ones, by the criminal justice system and the media. We lose our lives, or our physical and mental capacities, to violence; to chronic health conditions at higher rates in a culture unprepared to care for us in our own homes; and to our most unbearable impulses, succumbing to a blare in our heads that some of us cannot switch off.

Several years ago I led a study on nonprofits run by and for LGBT people of color, and the top strategy cited by this sector was building community. We need spaces to find each other in a world that has been unleashed upon us. We need hope to make sense of the loss and justice to salvage it. If systematic loss is the underlying theme that affects us as LGBT people as we age, then a community of care must be the theme that unifies us. Through loss can come resilience—another persistent theme in the LGBT aging research field. We learn to make our way out of mazes, or to borrow from a Marilyn Frye metaphor, to see how every bar in the birdcage encases us. We have learned what it means when no one cares about us, or cares only enough to misrepresent or annihilate us. A fellow panelist last fall posited that a new frame on aging and resilience among marginalized people would begin by asking the older person: You’ve made it this far, despite the odds—how ever did you survive?

***

Last fall, I lost 40 percent of my vision in my left eye, the result of a retinal detachment earlier in the summer. Because it’s not correctable, this visual impairment has reoriented how I see the world; a thin blur that when paired with both eyes creates the effect of vertigo, a universe on tilt. I read more slowly. I’m more aware of steps, room lighting, font sizes and technology. I’m unsettled by areas with heavy foot traffic, fearing that fateful bicyclist or aggressive driver who I did not see coming.

Vision loss is a topic I now discuss readily with my father and mother, ages 81 and 76, respectively. My father is steadily going blind and will soon relinquish driving, and years ago my mother lost her vision in one eye from diabetic complications. My parents rely on a mix of realism, humor and patience to understand these final years. It’s their form of resilience that they have bequeathed me. But the story of their hardship neither begins nor ends with them. Latino people are at greater risk of diabetes—another example of how race affects health status for millions of people of color—and the complications can emerge more severely in later life. Because of their incomes and minimal assets—an example of how race affects economics—they must rely on government support for both short- and long-term care, walking the tight rope of managing Medicare, Medicaid, health insurance companies and agency bureaucracies. And because our system limits the incentives for home and community-based care, institutionalizing people with fewer options, most likely those with less know-how to navigate these systems, my mother lives in a nursing home that leaves us all wondering whether it’s the best available option for her needs and our finances. What type of care will they receive as Spanish-speaking Latinos in a more rural part of northern Colorado? What type of care will I receive as my own health and age conspire? What are all the dots that need connecting?

When you lose a certain percentage of your eyesight, you adjust to see the road ahead, every door and stairway, every decision to move forward or hold still. Vision loss is most often a matter of degrees—you see, you see only certain aspects, or you see until you no longer see. What we need right now is focus. We are at a critical juncture in our country; we’re increasingly older and more racially and ethnically diverse, and larger scores of people are living the detailed spectrum of LGBT life. We’re re-evaluating the systems that are meant to care for us as we age, or as people with disabilities: safety net programs, the workforce, our own families and communities. We need to answer two essential questions. What will it take for the most disenfranchised among us to obtain an equitable level of care? What will it take to come to terms with our losses, prevent them wherever possible, and catch each other in the aftermath?