Helena Bushong is 60, transgender and living with HIV/AIDS. In 2002 she was dually diagnosed with HIV and AIDS and given six months to live. Ty Martin is an aging advocate who leads a support group for older gay black men with HIV/AIDS in the historic Harlem neighborhood of New York City. His group members grapple with stigma, the questions related to accelerated aging as HIV-positive people and a general longing for community. Both Helena and Ty are LGBT and people of color. And both of them combat the health disparities and socioeconomic challenges associated with aging as people who are marginalized on multiple fronts -- a reality rarely discussed in the mainstream aging field or in the popular LGBT rights movement. The virtual silence on this subject lives out in their personal and political lifespans.
A new policy report from SAGE (Services and Advocacy for GLBT Elders) seeks to challenge that silence. "Health Equity and LGBT Elders of Color" explores 10 policy areas where health and wellness can be improved for older LGBT people of color (a population that encompasses multiple groups that are diverse across race, ethnicity, culture, language of origin and more). The report examines policy topics such as federal funding gaps, the ways in which health reform implementation can reach marginalized people, LGBT-specific barriers within programs such as Social Security and much more. And as it relates to the stories above, the report speaks to the importance of interventions in areas that explore the intersection of health, aging, sexual and gender identities and racial and economic inequality. As one example, the AIDS epidemic has always singled out people of color and LGBT people, and it now uniquely affects the first generation of older people to age with HIV/AIDS, according to the report.
The premise of this new report is that while LGBT elders of color experience profound health disparities across multiple areas, they are often omitted from policy approaches related to health in later life. When major legislation or health initiatives are announced and implemented, rarely do they account for what it means to age as people of color and as LGBT people. In my experience, the oft-cited assumptions are that a "universal" approach to health and aging will work equally well among all people (including people of color and/or LGBT people), and that barriers exist only in relation to one aspect of a person's identity (which neglects how many of us experience discrimination at multiple levels, often at the intersections of our identities). Research and common sense explode these two assumptions, yet to challenge them would require a dedicated infrastructure of aging advocates versed in the variety and complexity of inequality. Unfortunately, while LGBT people of color are best poised to explain this multidimensional approach, they remain largely absent in the aging field as lead spokespeople or nonprofit directors, as political advocates and as subjects in important policy proposals. It doesn't help that most nonprofits led by and for LGBT people of color are small and underfunded -- and until this report, only a few national organizations spoke to the needs of LGBT elders of color.
Tracking the existence of disparities is an important first step to advancing health equity among marginalized populations -- but we must also move from the intellectually detached posture of merely citing disparities to one that explores their sources, manifestations and, ultimately, solutions. For example, this new report argues that health supports are rarely offered in ways that are culturally and linguistically appropriate for LGBT elders and elders of color; in turn, these groups are less likely to understand and access the available benefits. The report argues for improving health access by enacting new amendments on the Older Americans Act. In addition, the report recommends that the state-level outreach, enrollment and education efforts tied to health reform work with community advocates who are situated in marginalized communities to propose regulations and help lead these efforts. I spoke on this subject at the recent ASA national conference, where an advocate told me that if health reform is to work effectively, "it must leave no community behind." Better put, it should start with those communities that have always been left behind.
Another pervasive challenge to addressing these types of health disparities is the dearth in data about LGBT elders of color, which has numerous root problems and consequences. Federal and state survey instruments in the health and aging fields rarely pose questions on sexual orientation or gender identity. In those rare surveys where this data is collected, the older adult samples tend to be too small to draw representative samples, especially among narrower subgroups such as LGBT elders of color. Furthermore, these elder samples tend to skew "wealthier" and more educated, which misrepresents the population. (It also might speak to the lack of age-appropriate survey designs that can reach more isolated LGBT older people or low-income people, many of whom are people of color.) This new policy report asks federal agencies to invest in better data collection and focused research on LGBT elders of color. Without this analysis, LGBT people of color are left without the research to quantify how health inequality plays out in their lives, and without the stats to make data-driven arguments that are often required by government and private funders, journalists and advocates, among others. Inequality is a reinforcing cycle; we must disrupt it one solution at a time.
Now is the time to draw the spotlight on these solutions. Health disparities are rising across marginalized populations, yet few aging programs consider interventions that work effectively with these communities. Health reform efforts are moving at a rapid-fire pace across the country, at the potential expense of communities of color and LGBT people. The Older Americans Act is up for reauthorization and is primed for supporting LGBT elders. Social Security, Medicare and Medicaid are under scrutiny and in need of both strengthening and reform.
Helena and Ty demonstrate that health disparities among LGBT communities of color are in dire need of attention and support, which affects all of us. Helena recently wrote, "HIV/AIDS is not just an LGBT issue but a community and national issue as well. I am concerned about the readiness of the health care and aging service providers to care for those of us who will be on this Earth the longest, because it impacts my sense of dignity as a human being." She's right: Our dignity as a populace should be matched with the dignity of a tailored, large-scale response that explicitly engages LGBT elders of color. We need responses that are as multi-faceted as the lives we inhabit.
The report "Health Equity and LGBT Elders of Color" is currently available free of charge. Download the report here.