The Labor of Love: Transforming Dementia Research With Alexandre Baril and Marjorie Silverman

Jonathan Feakins

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From intersex Revolutionary War generals to Indigenous identities that predate colonization, transgender and non-binary people have a long and storied legacy. And yet, the priceless presence of trans elders has often remained rare, even within LGBT communities. Between societal pressures to remain hidden, gendered violence, and the toll on their own mental health, many trans people tragically never get to enjoy their twilight years.

For the past five years, two Associate Professors in the School of Social Work at the University of Ottawa, Alexandre Baril, PhD (he/him) and Marjorie Silverman, PhD (she/her), have been working to shine a spotlight on the unique plight of transgender elders. Their work couldn’t come soon enough: when first applying for funding in 2018, “there were literally zero projects on trans people living with dementia,” Baril said in a joint interview with the author. But between Baril’s scholarship in gender and disability studies, and Silverman’s career as a social gerontologist, their subsequent research has provided a bounty of lessons and takeaways that could inform dementia care for a marginalized community near and dear to both of their hearts.

“Trans studies is very much focused on trans youth,” Baril explained. “It’s all about trans children, trans teenagers, trans youth, all the moral panic around transitioning and ‘rapid onset gender dysphoria’…The older trans people are quite left aside.”

As more and more transgender people manage to live more openly and live longer and fuller lives, however, trans elders find themselves facing both the hazards – and joys – of old age.

Threading the needle between pride and self-preservation

One significant hurdle in conducting their research, of course, was simply to recruit participants in the first place. Over the course of a year, Silverman and Basil reached out to over sixteen hundred organizations – across not just Canada, but also France and the United States – that provide services to either the LGBT+ community or people living with dementia. Despite this Olympian level of outreach, their most recent article, “We Have to Advocate so Hard for Ourselves and Our People,” managed to feature only a handful of participants: two trans people living with dementia, and four carers (three of whom were themselves transgender or non-binary).

This small cohort has less to do with the relative size of the transgender population, however, as much as with how trans people may not feel safe to live freely in most elder care institutions. “What was very striking to us – although not necessarily surprising,” Silverman noted, “was the unresponsiveness we got from gerontology and dementia circles, who were in total denial that they have any trans clients.” The responses of LGBT+ organizations often fell similarly short. Despite an inclusive acronym – and critical role in modern queer rights from Stonewall and beyond – the needs and lived experiences of the “T” in LGBT have historically been treated, by the broader “gay rights” movement, as more of an afterthought.^[1]

Two of Silverman and Baril’s participants included a cisgender woman and her 75-year-old husband with Lewy-Body Dementia, who had transitioned half a century earlier (but had since not lived openly as a trans man). After moving from their rural home to the city to make use of a specialized long-term care facility, the couple ended up facing such unacceptable treatment that they returned home after only a few months. “There was a real circus in his room,” Baril recounted. “Employees were trying to go see who is this trans man, and what he looks like naked.”

“In this system,” Silverman explained, “trans older adults and their carers are facing so much deep discrimination that most people don’t trust formal care. They’re not turning to formal care, they don’t want formal care, and they don’t want to be in the formal system. And they’re really relying on their informal network of allies.” Many of the transgender carers, in particular, found themselves in caretaking positions because of their own experiences. Having had to navigate their own gender identity, these carers often have substantial insight into the kind of challenges faced by their fellow trans person, although a dementia diagnosis might throw an entirely novel challenge into the mix.

“There is something very specific in the embodied experience of being cared for by other people…particularly in a period of your life where you feel so vulnerable,” Baril said. “Those people that know you intimately, that know your trans-ness, that know the particularity of your body, the way you name your body parts, the way you see your body – those play a crucial role.”

While often specific to their lived experience, the knowledge and expertise of transgender people provides powerful lessons for how to best accommodate the often fluid needs that come with memory and elder care. Supporting these caregivers, meanwhile, could also be a critical step in establishing a new standard of care for transgender elders, especially those living with dementia.

Envisioning a future of empowering care

Much of Baril and Silverman’s approach is spelled out in the duo’s first joint article, “Forgotten lives.” In it, the authors laid out a framework for respecting trans people living with dementia in a manner that not only affirms a potentially fluid relationship with gender, but also counters the widespread ableism they see within modern dementia discourse. “We affirm,” the authors wrote, “that cognitive changes are not representative of a decline of personhood or the loss of self.”

Both Baril and Silverman also believe that this intersection of transgender studies and gerontology can provide lessons about identity that extend beyond just elder care. Their next two articles – “Forgotten Wishes” and “Transing dementia” – attempted to tackle an idea at the heart of memory care that they’ve termed “compulsory biographical continuity”: the societal assumption that rewards individuals who maintain a consistent identity and expression throughout their lives.

“I think it’s one of the concepts that we’ve been most excited about,” Silverman said. “There is a lot of pressure, not only in terms of gender identity or cognitive abilities, but in many spheres of life [where] there are consequences to making changes that can lead to more marginalization.”

Although heavily inspired by the transgender experience, the concept has applications in any situation where a person’s cognitive disability might be used as justification for reducing that person’s agency, or using their struggles as a legal foundation to declare them incapable of making their own choices. In mid-twentieth century England and Wales, for example, dementia diagnoses became the most common reason that the Lunacy Office (eventually renamed the Court of Protection in 1947) would appoint “receivers” to manage funds and property of those deemed “mentally incapacitated.”

Silverman and Baril hope that, by decentering long-standing assumptions about cognitive normativity, society might begin to reconsider how best to support a disabled person’s autonomy.

Pushing for change against a rising tide

Unfortunately, research on the trans experience can provoke some pushback. “We’re on our Academia page saying, ‘Why are there suddenly, in one day, five hundred views on this article?’ Silverman recalled thinking. ‘Oh! It went viral on TERF websites.’”

The TERF, or “Trans-Exclusionary Radical Feminists,” movement has become increasingly influential in recent years (TERFs, who might also describe themselves as “gender-critical,” argue that “sex” is biologically immutable, and broadly reject the very validity of transgender experience as a form of “gender ideology”). There is, sadly, historical precedent for fiery resistance to trans-affirming science. Many of the most famous photos of book burnings, for example, date to the attack, in May 1933, on the archives of Berlin’s Institute für Sexualwissenschaft. This institute not only conducted research and pioneered some of the first-ever gender-affirming surgeries in Europe, but also provided the local transgender community with employment as receptionists and maids.

“[The TERFs] were using – in a decontextualized way – the results of our research…to show, according to their own theory, that all trans people will revert to their sex assigned at birth, and therefore, trans identity is [fraudulent],” Baril explains. This decontextualization is not an aberration: boosting spotty (or later retracted) research as a means of spreading political disinformation about the trans community has actually become a favored method of anti-trans activism.

“Nobody in our research…[has] forgotten their gender identity, or ‘de-transitioned’…Some of them were blocked from continuing, for example, their hormonal therapy replacement, or had difficulty in navigating the gatekeeping medical system. But all of them were already kind of anchored in their gender identity,” he continued. Those opposed to transgender rights have often touted ‘detransition’ – and platformed select detransitioners – to sow doubt about gender-affirming care.

Real lives, of course, are not so easily categorized. For decades, transgender care worked towards end goals based on cisgendered norms (“Ex-GI Becomes Blond Beauty,” read the 1952 New York Daily News headline about Christine Jorgensen, the first person in the United States to have publicly transitioned). The current generation, meanwhile – which includes a larger population that openly identifies as non-binary and genderfluid – might opt to explore transition in less linear fashions (in addition to navigating the labyrinthian, ever-changing landscape of insurance coverage and local law).

Finally, and despite a long history of trans people having to overcome incredible stigma and lengthy evaluations to receive hormonal therapy and/or surgeries, transgender peoples’ experiences have always persisted, with or without the medical establishment’s permission or interventions.

“I think these TERF and anti-trans people really are willing to grab anything that can fuel their argument to ban trans-affirmative healthcare,” Baril says.

Relishing opportunities for trans joy

Despite the emotional pitfalls of researching a marginalized population, both Silverman and Baril have found no small joy in meeting their participants. “We felt really touched by hearing and witnessing those people’s lives,” Silverman confessed.

Both researchers feel no small amount of pride in having had a chance to explore such deep issues. Despite being long ignored by both academia and the elder care community, Baril and Silverman’s work clearly only scratches the surface of how many trans elders’ stories there are to tell.

“In French,” Baril explained, “I would say, ‘C’est notre devoir.’” [It’s our duty.]

Notes

1. Jake Wittich, “Stonewall Veteran Miss Major Visits Chicago to ‘rally the Troops’ against Anti-Trans Legislation,” Block Club Chicago, August 15, 2023, https://blockclubchicago.org/2023/08/15/stonewall-veteran-miss-major-visits-chicago-to-rally-the-troops-against-anti-trans-legislation/. ↑

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Featured image courtesy cottonbro studio.