Marie King is pushing eighty. She’s lean, with a lined face and shoulder-length hair that she’s dyed cherry red. In 2021, she experienced a medical emergency that put her in Pen Bay Medical Center in Rockport, Maine. When she was ready for discharge, medical staff determined that King could not return to her prior assisted living facility because of trauma she’d experienced there. They placed a call to Sunrise Assisted Living in Jonesport, one of nine facilities in the state then operated by Adult Family Care Homes of Maine. Sunrise had room for King, said Rhonda Chambers, a co-owner of Adult Family Care Homes. But when Chambers learned that King was transgender—and could be placed in a semiprivate room with another woman—Chambers said the facility would not take King.
These exchanges were clearly documented. King’s social worker at the hospital decided to contact GLAD, the Boston-based organization devoted to legal defense and advocacy on LGBTQ issues. GLAD filed a complaint charging that King’s admission was denied because of her gender. “The failure to treat a woman who is transgender appropriately and respectfully as a woman leads to profound harm,” the complaint reads, harm that can include struggles with anxiety and depression, and that can even lead to suicide.
King’s advocates argued that Sunrise’s denial violated Maine’s Human Rights Act, which was amended in 2005 to extend equal opportunity to transgender people. Because of that denial, King spent four unnecessary months in an acute care hospital during the pandemic, much of it in isolation.
The nursing home industry is defined by the word care, but it is often run in a way that diminishes the humanity of its clients—and not only on the basis of their identity. When I spoke with experts, residents, and nursing home staff for a Guardian series in early 2020, I heard three common concerns: there is too much industry fraud and consolidation; seniors are often “bounced” from one facility to another; and the understaffing plaguing the industry affects career training, job security, and staffers’ ability to meet the needs of all residents. As the Covid-19 pandemic played out, these trends led to a devastating spike in deaths and illness among both elders and staff. Despite some sincere but inadequate efforts by the Biden administration, little has changed since.
King’s case illustrates how LGBTQ elders are caught between two forces detrimental to their care: the continuing failures of the nursing home industry and a rising moral panic around sexual and gender minorities. Whether in schools, libraries, or assisted living facilities, forces across the country who claim to be defending morality and freedom are pushing back against tolerance and anti-discrimination laws. Queer elders are finding that the complex inequities they face throughout their lives are following them to the nursing home.
Cared to Death
Not everyone gets to grow old. In certain states, in certain communities, among certain minority groups, it takes extra luck and tenacity to pass the half-century mark, to watch the slow advance of wrinkles and crow’s feet across our necks and faces. Those of us who live long enough to need help with cooking our meals, washing our hair, getting dressed—activities of daily living, or ADLs in nursing home speak—can turn to our unmarried eldest daughter still living at home (jk), our retirement funds (lol), home health aides (whose services can cost from $13 to more than $30 an hour, times twenty-four hours a day, times seven days a week), or long-term care facilities (funded by health insurance, if you’ve got it, or Medicare and Medicaid, as long as it lasts).
For decades, nursing home industry experts have been flapping their hands in horror, warning anyone who will listen that our aging population demands we reconsider how our nation supports long-term care for elders. Yet today, the industry—which has always had problems maintaining consistent quality of care—has been weakened by an array of bad business practices.
In some cases, the problem has been outright fraud due to self-reporting mechanisms and anemic state and federal regulation and enforcement. Unscrupulous operators have ended up in court for paying bribes or kickbacks to doctors to steer patients their way; others have simply abandoned their facilities, leaving staff to deal with hefty unpaid utility bills. Some jump in to drain nursing homes for profit and then make a quick sale. This has fueled the closure of facilities, particularly in rural areas.
Like so many industries, nursing homes are also consolidating, creating ever-larger chains and conglomerates. In fact, Adult Family Care Homes in Maine ended up selling its facilities in 2022 to a Texas-based company that also runs homes in Pennsylvania. Meanwhile, the entrance of private equity into the nursing home industry is shifting it from family-owned care homes to faceless chains seeking to maximize profit, a transition that has caused state legislators to watch while new profit-driven groups sell real estate out from under already precarious nursing home operations, which are then forced to burden their bottom line with extractive monthly rent payments.
The result is usually understaffing and underpayment, with average annual salaries for nursing assistants ranging from $24,000 to $40,000. That leads to a high staff turnover rate and low levels of training and experience. Union busting by nursing home corporations is considered a cost of doing business.
The nursing home industry is defined by the word care, but it is often run in a way that diminishes the humanity of its clients.
All this reduces elders in need of care to income-generating cogs in the machine: the disorienting bouncing of elders from one site to another in order to maximize reimbursements per patient hour has become more common. Each state has its own unique reimbursement structure, with revenue flowing to nursing homes from the state, from private insurance, and from the federal government. Some nursing home chains refuse to accept patients who aren’t eligible for higher rates of reimbursement, shuffling them among hospitals, low-quality facilities, and even homeless shelters rather than accepting lower hourly payments. It is illegal to bounce a patient when their higher payout is exhausted if they need continued care. Nevertheless, such evictions happen all over the country every day. The problem is that few elders or their families know this rule, and even fewer have the resources to do something about it.
The Medicaid and Medicare systems, never built for the needs of the country’s dramatically rising elder population, were also never designed to cover ten, fifteen, or twenty years of long-term care that many elders now require. Both are underfunded and underprepared for the wave of elders coming their way in the next decades.
Fighting for Scraps
There are new efforts at the state level to keep elders in their family homes as a means of bypassing the turbulent nursing home industry—and to keep long-term care costs down. But these are little help for those in precarious housing situations, with potentially nowhere else but a facility to call home. The system seems to rely on these elders having shorter lifespans. Still, nearly half of the unhoused people in the United States are over the age of fifty.
Intermittent homelessness from an early age is one of a complex cluster of obstacles to reaching old age faced by the queer community that many other demographic categories never have to contend with. Others include elevated exposure to HIV/AIDS and diseases like hepatitis; chronic financial instability; inadequate, inaccessible, or discriminatory health care; and physical and mental abuse from family, friends, and society at large. Yet as the U.S. population ages rapidly, so, too, will LGBTQ community members. Studies project that the current population of three million LGBTQ elders over the age of fifty will more than double over the next seven years, reaching an estimated seven million by 2030. (Tellingly, as with prison and homeless populations, members of the queer community are often tracked as elders starting at fifty because of advanced aging characteristics.)
According to AARP, nearly 40 percent of LGBTQ elders are disabled or chronically ill. More than half report that they are lonely and socially isolated from their family and community: a recognized indicator of mental and physical health. Marie King’s experience is not unique. All across the country, LGBTQ elders are grappling with an industry unraveling amid a politics of discrimination, one that has found it more expedient to punish minorities than to fix an intractable long-term care problem.
In January of 2021, President Biden issued an executive order intended to prevent discrimination on the basis of gender identity and sexual orientation in employment, housing, education, and health care. The next month, the Department of Housing and Urban Development finally added sexual orientation and gender identity as categories protected under the Fair Housing Act, which was originally passed by Congress in 1968. The federal Nursing Home Reform Act also includes protections for LGBTQ elders. Yet studies have shown that these elders disproportionately suffer discrimination when entering long-term care. And statewide protections can be weak: there are nineteen states with no prohibitions at all against discrimination by gender or orientation.
Taking Offense to Equality
Nominal protections for LGBTQ elders in long-term care will soon to be put to the test. A rather quiet ongoing legal conflict in California is set to determine whether it is a crime for nursing home staff to intentionally and continuously deadname or misgender a trans elder. The California legislature passed a law known as SB 219 in 2017 prohibiting such discrimination, but it has not taken effect due to a lawsuit claiming to protect nursing home employees’ “freedom of expression”—at the explicit expense of residents’ rights.
The challenge is the work of Taking Offense, a shadowy advocacy group which self-describes as an “unincorporated association which includes at least one California citizen and taxpayer who has paid taxes to the state within the last year.” That’s practically all we know about Taking Offense, as well as the name and contact information of their lawyer, David Llewellyn Jr., who has declined to speak with any journalist I could find. (Llewellyn also did not return my call.)
With SB 219, the intent of the California legislature was to make it unlawful for long-term care staff to “willfully and repeatedly” refer to residents by names and pronouns they don’t identify with, and to assign, reassign, or refuse to assign rooms to transgender residents that don’t match their gender identity. Repeatedly calling a trans woman “Mr.,” for instance, would be a misdemeanor, and it would be illegal to put her in a room with men, with the possible penalty of 180 days in jail and a $2,500 fine. If implemented, the bill would strengthen and qualify existing nondiscrimination laws in the California Fair Employment and Housing Act.
The Taking Offense challenge is a “get off my lawn” screed and a willful misunderstanding of LGBTQ rights; it invites overzealous nursing home staff to pass judgement on their residents’ sense of self. The contempt in the group’s legal filing practically drips off the page. It complains a lot, at length, and randomly. One section declares that pronoun is not clearly defined, then goes on to list “different declensions” like “zie, zim, zir, zis, zieself.” The intention is to make the current moment’s search for how best to protect sex and gender minorities to be silly, a child’s game beneath the state court and state law, and certainly beneath the righteous, anonymous people behind Taking Offense.
The group also claims that SB 219 is “unconstitutionally vague and over broad”:
The statute states generally that a violation consists of “[w]illfully and repeatedly fail[ing] to use a resident’s preferred name or pronouns after being clearly informed of the preferred name or pronouns” without clarifying whether this prohibition applies only when conversing with the resident; or when speaking in the presence of the resident; or when speaking about the resident in all times and places (whether at the licensed facility or elsewhere); or when speaking during working hours of the staff member at the facility as opposed to speaking at all times (all day, every day and forever); or applies also when writing to, in the presence of, or about the resident; or when writing only official records or business records concerning the resident as opposed to personal, academic, political, ideological, polemic, educational and/or other writings that mention the resident; or when writing about the resident after the death of the resident; or when engaging in forms of expression, including, but not limited to, speaking, writing, art, music, tracts and other expressive media that are indisputably protected under state and/or federal constitutional principles of freedom of thought, press, expression, conscience, religion and other legal guarantees and exceptions.
Further, the suit contends that the law should be changed to specifically allow for the use of the pronoun “heshe,” which supposedly “offers a much simpler adaptation to the gender-pronoun tug-of-war and battle of wills and wits created by the Legislature.” Such a suggestion, of course, is not meant to be respectful or constructive. As the lawsuit states: “People seeking to commandeer the authority of the state and the concern of the state for residents suffering from gender dysphoria to impose their culture-change ideology on the gender-conforming people of the state do not deserve protection.”
A trial court initially ruled in favor of the California law, but Taking Offense appealed the decision. In July 2021, three Third District Court of Appeal justices, Elena J. Duarte, Harry Hull, and Ronald Robie, jointly and unanimously ruled that boarding trans elders according to their birth sex was illegal—striking down one argument by Taking Offense—but that deadnaming or misgendering elders was legal. The court agreed with Taking Offense’s claim that requiring the use of chosen names and pronouns “violates staff members’ rights to free speech, free exercise of religion, and freedoms of thought and belief, and is vague and overbroad.”
Justice Robie wrote in a concurring opinion, “The Legislature . . . unfortunately chose a prophylactic remedy to eliminate misuse of pronouns that just went too far. Instead of mandating that employers ensure the use of proper pronouns in the workplace, the Legislature unwisely made misuse of pronouns a crime.”
On September 14, 2021, the San Francisco Board of Supervisors passed a resolution asking the California Supreme Court to strike down the Third District decision. State Attorney General Rob Bonta also filed a petition to the Supreme Court asking for review. UC Berkeley and UC Davis School of Law professors wrote to the Supreme Court to support SB 219.
A staffer for State Senator Scott Wiener, who introduced SB 219, conveyed the senator’s view to me: “It’s outrageous that bigotry has been allowed to halt implementation of a law that does nothing more than ensure LGBTQ seniors can live with dignity. This is the generation that fought for LGBTQ equality, and leaving them vulnerable to more discrimination in long-term care is simply cruel.”
In a brief filed with the State Supreme Court, the state argues that Taking Offense has no standing to bring the case and that SB 219 is constitutionally valid. “Just as the State may validly bar verbal discrimination in the workplace,” the brief reads, “it may prohibit willful, repeated misgendering of long-term care residents in the facilities where they live.” Emphasis is placed on showing, with medical research, that misgendering and deadnaming are damaging to elders.
The brief emphasizes that nursing homes are elders’ homes, where they are intimately cared for by staff, who feed them, change their clothes, bathe them: “Discrimination by health care providers can call into question the reliability and quality of every aspect of a patient’s care. If, for example, a nurse were to willfully and repeatedly refuse to use an LGBT long-term care resident’s name and pronouns, that resident may reasonably question whether the nurse is otherwise failing to act in the best interests of the resident’s health.”
More than twenty advocacy groups have signed on to an amicus brief to the California Supreme Court in support of SB 219 and criticizing Taking Offense’s suit, including Pride at Work, National Center for Lesbian Rights, Lambda Legal, Equality California, National Women’s Law Center, ACLU of Southern California, Trans Lifeline, and Transgender Law Center.
Chosen Family, Chosen Homes
One alternative to the prejudice that many LGBTQ elders receive in nursing homes and long-term care facilities is to provide housing and residential services that serve the queer community specifically.
Queer elders are finding that the complex inequities they face throughout their lives are following them to the nursing home.
On Myrtle Avenue in Fort Greene, Brooklyn, across from the park, stands a new seventeen-story residential building with 145 units reserved for those sixty-two and older who are living at or beneath 50 percent of the area’s median income. It is the largest of its kind in the country. About half of its units are intended for LGBTQ residents. Stonewall House, which opened in 2019, was built by the city in partnership with SAGE, the nation’s oldest LGBTQ elder-focused organization. The development is geared toward the “aging in place” approach: residents can receive health care services on location.
On the first floor of Stonewall House is a nearly seven-thousand-square-foot community center operated by SAGE, one of the organization’s six senior centers in New York City (Midtown, the Bronx, Staten Island, and Harlem are the other locations, in addition to another center in Brooklyn). Their tagline is, “We refuse to be invisible.” In addition to their facilities, SAGE offers a range of services across the country. SAGECare provides LGBTQ-affirming staff training and credentialing courses to organizations in all fifty states, in person or online. And SAGEServes supports elders and their caregivers with a buddy program, counseling, and caregiving respites. Yet housing discrimination against LGBTQ elders remains common.
In the lobby of the SAGE Center at Stonewall House, when I stopped by not long ago, seniors were coming and going. Bright handwritten signs covered the walls, and staffers rang out hellos from behind the front desk. It’s a far cry from most of the senior centers I’ve volunteered in: beautiful, well-kept, and well-resourced. Staff are protective of their members; the site director came out to greet me but was wary of offering a stranger a tour. Visibility, as this community knows, can bring danger.
“This is the very first generation to be out. Now they are entering a point in life when they are more vulnerable and at risk,” Aaron Tax, SAGE’s managing director of government affairs and policy advocacy, told me. “As they think back on the history of stigma, they wonder if they should be careful about being out. Some decide to go back in the closet when they enter long-term care.” SAGE works to prevent elders from returning to the closet.
Pushing the Moral Panic Button
The Maine Human Rights Commission ultimately found that Marie King had “reasonable grounds” for her complaint against Sunrise Assisted Living in Jonesport, Maine. A landmark settlement—the case is believed to be the first of its kind—was reached in June of 2022. It required all nine Adult Family Care Homes (now Magnolia Assisted Living) facilities in the state to adopt a “comprehensive transgender nondiscrimination policy” and mandated that staff and management attend training developed by SAGECare.
The thing about moral panics is that they thrive on austerity, intractability, and hopelessness.
GLAD and the Sunrise parent corporation released a joint statement after the settlement that reads, “The parties hope that the positive resolution of this matter will lead long-term care facilities across the country to adopt policies that ensure that transgender older adults, indeed all older adults, will be treated with dignity and respect.” King was awarded $1,000, and GLAD received $8,500 to cover legal expenses.
In a GLAD video about the case, King is shown at her new home, sitting outside in the grass in a wheelchair, with trees and flowers behind her. One clip shows her stretched out on the bed in her room reading a book. King said Sunrise refused her admission out of “unadulterated prejudice.” “They turned out to be a different strain of people,” she said, “They knew they were going to do wrong, but they went ahead and done it anyway.”
GLAD’s Chris Erchull said that the first problem was that there weren’t enough assisted living facilities to meet Maine’s needs. “The second problem is that as a transgender woman, [King] faces additional obstacles to being able to find the right home.”
These two problems are related. The thing about moral panics is that they thrive on austerity, intractability, and hopelessness. Can’t find a way to fix the threadbare public school system? One thing you can do is stop the lone trans student from using the same bathroom as your daughter. Can’t convince the owners to pay you a living wage for the work you do at this nursing home? You can assert power by refusing to let residents force you to use words you don’t want to.
Making folk devils out of the disadvantaged is a politically expedient pastime. It can also be a way of dealing with anxiety, as intellectual historian Barnaby Raine has reminded us, especially in a “moment of social transition.” But abstract obsessions distract us from creative ways to solve the real, tangible problems we collectively face. After all, King is just an old woman, like your grandma or my aunt, who’s looking for a good roof over her head in her final years.
“I know there’s other people in my same position,” she said, “But I don’t know how many of them fight back like me. I got tired of being the doormat. I decided it was time to put an end to some of it.”