I spent the summer of 2012 homebound, recovering alone in my 400-square-foot studio apartment in Brooklyn. A serious accident on Memorial Day led to ankle surgery, 12 weeks on crutches and the final stretch of August re-learning to walk. When you live alone and are relatively immobile, the days are epic, and the psyche churns with questions: Would I fully regain my ability to walk? Had I amassed the proper support network of friends at this stage in my adult life? And if I remained in New York City, a city fraught with opportunities yet rife with inequality, how should I plan for my aging as a queer person?
It was fitting, then, that I began working that summer on policy guidance to compel the New York State Department of Health to include LGBT-specific questions in its statewide patient assessment system for specific Medicaid-funded providers—a policy win announced this week. As I interviewed researchers and health leaders from around the country to grasp the implications, and as I schooled myself on the state of LGBT data collection, I found myself growing lonelier by the week. I couldn’t help picturing my later years at the mercy of providers and researchers who are indifferent, or even hostile, to my queer life.
I work daily on the politics that underlie these issues, and I’ve arrived at this proposition: as we age, each of us will reach a moment where we’ll need to ask for support in dealing with the frailty incurred through aging. But if we’re lesbian, gay, bisexual or transgender (LGBT), the type of institutional support we receive at that point will rely largely on the questions that have already been asked about us. If we’re denied these data to craft relevant health interventions, we will perish off-screen in droves, measured only by the shallowest of statistics.
Why, precisely, is data collection important for LGBT people? In clinical settings—hospitals, health centers, senior settings and more—asking patients about their sexual orientations and gender identities helps create optimal, patient-centered care plans that account for their unique lives, support systems, needs and preferences. In the long-term care context, a provider who knows that her client is a lesbian—and has been trained to deal properly with LGBT clients—will be more apt to consider what the available research confirms: LGBT older people are more likely to be single and without children, have thinner support networks that are largely reliant on friends, are at greater risk for poverty and social isolation and have survived a lifetime of discrimination, with psychological and material costs. Without veering into overgeneralizations, LGBT people might also have different mores, relationship patterns, family systems, legal quagmires and cultural values related to sex and gender, and a subtler take on privacy and authenticity, given the years we’ve spent negotiating what we know at our core with what we impart to others.
Skeptics are right to ask whether these questions inadvertently set us up for discrimination. However, most experts agree that these concerns are overstated and can be mitigated by establishing additional precautions, such as transparent confidentiality policies, LGBT cultural competence training for frontline staff, and know-your-rights resources for LGBT people. All these aspects should inform proper care provision, yet providers are rarely mandated to solicit information about us as LGBT people. And they’re almost never required to aggregate and report health data, or the numeric extent to which they serve LGBT people—both of which limit the public understanding on LGBT health disparities. (The New York State Office for the Aging recently challenged this trend by prioritizing LGBT data collection throughout its system.)
As with clinical settings, research surveys are essential to the gathering of LGBT data. Robust population data improve science, build knowledge, shape the cultural discourse and influence public policy. Yet we’re denied these benefits as queer people because the sources for LGBT-specific national data are virtually nonexistent. There exists no national, large-scale, comprehensive, representative survey of LGBT people, and rarely are questions about sexual orientation and gender identity included in representative surveys at any level—from the U.S. Census to the vast array of surveys administered by the federal government and private research firms. While we’re seeing some promising advancements in these areas at the federal level, we’re still hindered in our ability to count the number of LGBT people, or to empirically study our experiences across areas such as health care, employment, poverty and more.
Another challenge is that where LGBT studies do exist, the samples sizes on sub-groups, such as people age 60 and older, are often too small to yield representative findings. (It’s even worse for LGBT elders of color and transgender elders.) At SAGE, we often find that the older adult data in the existing slate of current LGBT studies tend to skew higher-income, white and better-educated, which misrepresents LGBT seniors. It doesn’t help that research questions on sexual orientation and gender identity are insufficiently tested to ensure accuracy across age and other factors. For example, we don’t fully know if identifying as an LGBT person is nuanced differently for seniors because of generational reasons, which would argue for tailored questions. Do terms such as “queer” or “senior,” as two examples, resonate, isolate or offend older LGBT people in surveys—and to what extent? Do they work equally among all older LGBT people, or all older people? And has this led to measurement error? We simply do not know.
I recently contacted a handful of leading researchers around the country to understand the reasons behind the dearth of LGBT data: the motivations, the structural barriers and the consequences. Some situated this concern in a long, sweeping history of marginalization and invisibility, which makes it easier for research elites and government heads to deem LGBT people irrelevant to public research without accountability or consequence. Others told stories of research panels denying their requests to include these items in their national health and retirement surveys, as one example, because the panels believed that these questions belonged only in surveys focused on sexual activity; as if a sexual minority has no social identity, or as if health and social factors have no sexual or gendered dimensions. Some LGBT researchers were told that these questions would offend or confuse non-LGBT respondents, and this would lead to attrition in the long term, compromising the integrity of longitudinal studies on the broader population. The academy is more conservative, one researcher opined, which makes it difficult to move “new” concepts past university gatekeepers. And many noted the insidiousness of the right-to-privacy argument, which contends that these questions infringe on the privacy of respondents—ironically, in supposed support of LGBT respondents. I hear these arguments often, and they always seem overstated and fraught with stigma; why are queerness, gender and sex considered private matters in research when so many LGBT people live open lives as attempts to challenge that exact invisibility? Oppression is serpentine—note how prudishness, antiquity, bigotry and pathology conspire to “protect” us from our own data.
Everyone I contacted cited the challenge of crafting questions that yield accurate results, as well as the ways in which research panels refuse measures on sexual orientation and gender identity on the grounds that they haven’t been validated. Few researchers would deny that measuring sexual orientation and gender identity is complicated, though certainly not impossible. These questions require wrestling with the interplay of behavior, attraction, expression and identity—a complex undertaking, especially in a movement where LGBT identities are deeply personal and categories are ever-shifting. But best practices have emerged and are evolving for both sexual orientation and gender identity. Regardless, these definitional concerns haven’t prevented other equally tricky, identity-based variables from being included in mainstream research studies. As a Chicano, I think about monolithic, widely debated, government-invented terms such as “Hispanic” or Latino, which, when used casually by researchers, can conceal the precise differences that they should be investigating: socioeconomic status, language barriers, immigration status, country of origin, and more. But the response isn’t to stop studying race and ethnicity in social science; it’s to study the correlation among racial categories and other characteristics to better understand how disparities occur, and to understand precisely why and how the categories can be reshaped to deal with their limitations. Yes, identity categories exist as social constructs in constant flux, yet our response should be to build on prior research to arrive at modern measures that allow for this subtlety. The trickier charge for researchers is to balance the interplay of these various notions while crafting measures that are understandable to the general population, not just LGBT people.
As LGBT people, we also need better data for political reform. Government officials rely on data to understand the scope of a social concern, and funders in the public and private sectors employ data to understand need, reach and impact—and, ultimately, funding levels. We need data to substantiate arguments that build public will and shift the imagination of institutions across the spectrum. For example, I’ve worked for years with journalists who require published research to confirm the prevalence of the hardship we’re describing; this means that articles focused on less-studied populations don’t move past editors who remain unconvinced by the lack of empirical evidence. It’s troubling that without rigorous data, newsmakers view our LGBT problems as a mere human interest story, or as anecdotal and less “true.”
A few years back, a fellow panelist on this topic remarked that she wasn’t interested in research divorced from the survival and liberation of all people. Her comment was about process, in that researchers can impose studies on their subjects with little community engagement; and it was about content, in that LGBT research articles can read as self-referential and grandiloquent, divorced from the aspirations of grassroots movement building. I agree on all counts. To survive as queer people, what we need more than ever are solutions. We need care professionals with the knowledge and tools to ask about our queer lives. We need well-funded, representative surveys with validated questions on sexual orientation and gender identity that work across age, culture and more. We need to challenge ignorance, prudishness and stigma in the mainstream research field. We need state government agencies following New York’s lead in reforming their patient intake processes and requiring reporting from agencies on how they serve LGBT people, especially in their later years. And we need to persistently question the research variables that measure our multifaceted identities. Finally, quantitative data and empirical research play an important role in the social sciences and in politics, but we should equally honor other forms of knowledge and investigation.
The unmeasured LGBT life merits resistance; our experiences as LGBT people should be systematically integrated into the American research system. Yet “unmeasured” can also mean limitless, without restraints. In that spirit, research can help remove the barriers that restrain many LGBT people from living financially secure, in good health, and free from discrimination and violence. In this ideal frame, the unmeasured LGBT life is unfettered, resilient, surrounded by loving and supportive relationships and fulfilled until the end. We deserve those types of lives as queer people. We deserve a life that’s counted. We deserve a life that counts.