The Blog to Transform Advanced Care
Advancing Care through Innovation, Observation and Collaboration.
By: Adriana Krasniansky, Faith-Based Partnerships Intern, C-TAC
According to the research initiative Aging with Pride, approximately 2.7 million adults ages 50+ in the U.S. self-identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ). Approximately 20% of LGBTQ older adults are people of color, a number expected to double by 2050.
Members of the LGBT community face different experiences when managing aging, advanced illness, and chronic illness. Not only have LGBT individuals historically been underrepresented in medical research and training, but they also face daily macro and micro-aggressions that affect their quality of care, economic resources, and social protections. These experiences are amplified for LGBT people of color, who, as scholar and activist Dr. Imani Woody describes, must “wake up and say, ‘Which fight am I going to fight today?’”
In June 2020, C-TAC met with LGBTQ expert-activists from the organization SAGE (Services & Advocacy for GLBT Elders) – Sadiya Abjani, Director of Learning and Equity, and Sherrill Wayland, Director of National Education Initiatives – to learn more about the LGBT elder community’s experience in 2020 as well as the innovative ways that organizations such as SAGE are stepping up to serve.
C-TAC: To start, can you speak to some of the ways that the aging experience is different for the LGBT community, and what areas are key to addressing advanced illness care for LGBT adults?
Sherrill: We often hear the question, “How does the LGBT age differently?” It’s not that we age differently, but that our experience is different. We’re less likely to have children (the most common caregivers for older adults), and we’re more likely to age alone. This means that LGBT elders are more likely to be reliant on the paid formal care system, which hasn’t always been welcoming of us. We are less comfortable seeking out care from these environments, because we have experienced discrimination from national health and social systems in the past. This is all compounded for those of us who have other life experiences – Black, POC, Indigenous communities – that may further limit our access to quality care.
Another critical issue is caregiver support. We know that LGBT caregivers and loved ones might not be recognized by health and social service systems, which means that they won’t be given the same support to be there with us as we age. If our caregivers aren’t recognized, then who will be with us?
Sadiya: One of our biggest goals is trying to provide a sense of safety while also providing appropriate care. If we can’t provide safety, we can’t provide care. ‘Inclusive environments’ and ‘safe spaces’ are buzzwords today, but they matter. One simple example: If a trans man has been taking long-term hormone replacement therapy, but your hospital’s intake system doesn’t create a safe space to voice this, you’re increasing the risk of that individual not receiving important preventative measures such as pap smears, which directly impact health outcomes. We need to clinicians and providers to ask, “Are we creating spaces for individuals who have faced centuries of discrimination to feel comfortable being themselves? Are we offering them the same tailored care that we provide to others?”
We are actively working to promote inclusive and supportive healthcare language. Sometimes ignorance in healthcare manifests in small conversations and comments. These micro-aggressions can become huge triggers indicating that a clinician doesn’t know how to take care of you. If you’re directing these toward someone who’s experienced 60-70 years of the threat of harm, these aggressions can be very scary.
C-TAC: The complexities of race, faith tradition, and culture compound life experiences for many LGBT elders. Can you discuss intersectionality and the unique circumstances it presents?
Sadiya: I identify as a queer South Asian Muslim. All these characteristics come into play as I work at SAGE and train others in elder care support. Our intersectional identities compound the issues we deal with daily.
For example, it means different things to be an LGBT person, an LGBTQ POC, a Black LGBT woman, or a Black trans LGBT woman. Folks ask us, “When you talk about older adults, what does older adult mean?” Well, when we talk about a middle-class white gay man, older adult suggests 60-70s. When we talk about Black trans woman, older is 30. Part of our job is working to make sure that we name and address these discrepancies.
C-TAC: A big part of your work focuses on LGBT representation – representation in data and research, representation in policy and decision-making. How does representation improve quality of life for LGBT elders?
Sadiya: SAGE has done incredible work to make sure that LGBTQ voices are counted in aging community research, so that funding can be allocated and that underrepresented community voices can be acknowledged. However, a problem arises when you don’t trust that a government to count you in order to protect you but will count you in order to target and harm you. With that perspective, representation takes on a completely different tone.
Sherrill: Current data suggests that there are 3-4 million older adults nationally who are LGBTQ, but that’s only a soft estimate. One thing we need to improve is asking inclusive intake questions in our research; it seems small, but it’s incredibly important. Inclusive questions help us collect data that represents unique LGBT health patterns, lifestyle and culture, mental and emotional experiences, support networks, and predispositions.
C-TAC: Can you speak a bit about the LGBT aging and care perspective during the COVID-19 crisis?
Sadiya: For a lot of our folks, the SAGE center programming is the only time that they get to engage with members of their community. We moved all our programming online – tango parties, classes, pride parades, you name it.
LGBT individuals often overlap with high-risk populations. In addition to core health and economic concerns, the coronavirus has increased our concerns for LGBTQ experiences of social isolation, stress and anxiety. Our staff members are connecting with 40-50 elders (each) every week to make sure they are getting food and medicine and staying connected. We are in direct weekly contact with 300-400 LGBT elders, and that’s just through the SAGE NYC office.
C-TAC: Many LGBT communities were – and are – advocates themselves. Can you speak to the experience of advocating for advocates? How can advocates care for one another and learn intergenerationally?
Sadiya: We – the younger generations on staff – realize that we’re here because our elders put their bodies on the line. Many of our older LGBTQ community members are using this moment to share their stories of activism during times such as Stonewall. These intergenerational conversations connect the past and present times of social change and activism.
Some of our elders are saying, “If our bodies and health weren’t a factor, we would be fighting today.” So, we’re creating meaningful and important ways for elders to join the movements and to ensure that their ‘limitations’ don’t limit their ability to participate. We are dealing with a phenomenal community of individuals who have experienced so much and continue to fight.
Sadiya and Sherrill are both actively involved in SAGECare training, which helps service providers create more LGBT-welcoming healthcare offerings, including palliative care, hospice care, and advanced illness planning. SAGE also collects and publishes resources on end-of-life care for LGBT communities, including information on how to facilitate EOL planning for trans individuals and conversation guides for LGBT caregivers. For more information about SAGE’s work to support LGBT elders or to schedule a training, please visit their website at www.sageusa.care. SAGE has also prepared a guide to serving diverse elders (Asian Pacific Islander, Black, Hispanic/Latino, Native American, and LGBT) that can be downloaded at www.lgbtagingcenter.org/guides.