Sitting at the southern tip of the mouth of Tampa Bay, there is a spot akin to somewhere over the rainbow. It’s here, in Palmetto, Fla., you’ll find the Palms of Manasota, which, according to the literature, is ”America’s First Gay & Lesbian Retirement Community.”
Walking through the manicured, greenery of Phase I in late December, signs of gaiety in the neighborhood are nearly as rare as children. Occasionally, there is the telltale equality logo from the Human Rights Campaign stuck to a bumper. Is that a queer-rainbow sun-catcher on that neighbor’s patio? The gay flavor of the Palms is not in its trappings, but in its residents. Like Al Usack and Ed Kobee.
Together for 18 years, Al, 75, and Ed, 70, moved from the D.C. area to Florida about two years ago. They’ve made a comfortable home for themselves in this gay enclave. With an aesthetic mildly reminiscent of The Golden Girls, the couple have decorated their home with mementos of rich lives. From their living room with its cathedral ceiling, they have a view to the community’s central pond. As retirement goes, this looks awfully comfortable and peaceful. The cost? Base price for one of these airy, lakeside, two-bedroom, two-bath homes is $279,900, plus the $310 monthly association fee.
”We are here primarily because this is the gay retirement community,” says Al, adding that he’s tried to raise the community’s gay profile a notch with a rainbow flag at the entrance. So far he’s met with resistance. Still, the two don’t seem bothered by low-key living.
”We had looked at a number of places in the D.C. area for retirement,” Al continues. ”We also looked at a number of areas in Florida. We just thought we would never feel comfortable in a heterosexual retirement community. We almost settled on a place near Tampa. We’d actually gone down to sign up. We’d picked out our lot and the house we wanted. But we spent a night at that community, and during the course of the night we just decided we wouldn’t be comfortable. The management was very friendly, but it was the thought that you just wouldn’t be free.”
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Just ahead of the wave of baby boomers to follow them, Al and Ed are pioneers of a sort. The baby-boom generation is counted as the nearly 80 million Americans born between 1946 and 1960. Gays and lesbians likely make up somewhere between 2 and 10 percent of this huge generation — between 1.6 and 8 million people. This was the first generation to collectively experience gay life beyond the closet door. And just as America will soon be transformed by a disproportionate number of elderly, so too will the GLBT community.
The Palms of Manasota is just a hint of things to come. Today, gay retirement communities are just starting to pop up around the country. But the needs of seniors go far beyond housing. And for GLBT seniors, there are issues particular not only to feeling comfortable where one retires, but to health care, partnerships, finance and the end of life.
For Al and Ed, everything has come together fairly tidily. But Al and Ed are a fairly tidy couple.
”We met at an annual conference of our church, the Unitarian Universalist General Assembly, in Little Rock, Ark.,” says Al, painting a picture of two upstanding citizens. ”I was from Fairfax and he was from Maryland.” Ed adds that the couple founded the Maryland Interfaith Fairness Coalition.
Their professional lives were as upstanding at their spiritual lives, with Al working for the CIA and Ed working in a Navy lab. Both had wives before coming out, and Ed also has two children, but that’s about as complicated as things get. Their government pensions, for the most part, have allowed for a comfortable retirement in this gay village, and some occasional travel. As gay retirement goes, this doesn’t look half bad.
”We are very satisfied,” says Al. ”We are very busy folks down here. It’s an active community. Everybody knows everybody. There are a lot of parties. And there is a wonderful Prime Timers [elderly, gay, male] group here in the Sarasota-Bradenton area with some 200 members. We’re going on a barge cruise in Germany in May that Prime Timers is organizing.
”We’re getting older,” says Al. “We’ve got our aches and pains. But we’re active. We can visit museums, operas and plays. It’s a wonderful time of life.
“And St. Petersburg has a lot of gay bars,” he adds wryly. ”It’s pretty lively.”
What more could a gay retiree want? Regardless, it’s probably more than a lot of GLBT retirees today are getting. ”It’s definitely upper-middle class,” says Al of the life they can afford in their pink patch of Florida.
Last December, about 800 miles north of Al and Ed, aging issues in the GLBT community were front and center at the National Gay and Lesbian Task Force’s ”Make Room for All” summit at the Washington Plaza Hotel in D.C.
”Aging is difficult, very difficult, for LGBT seniors,” Terry Kaelber told summit attendees during a panel. Kaelber is the executive director of the New York-based Senior Action in a Gay Environment (SAGE), the largest group working for gay seniors in America. ”If we’re to have a society where age is valued, differences must be acknowledged…. Aging is not one size fits all.”
The December summit was called in response to the White House Conference on Aging (WHCoA), a once-a-decade affair designed to craft recommendations to Congress and the president on policies related to aging. The fear at the summit, held immediately prior to this decade’s Dec. 11-14 WHCoA, was that GLBT elders and their issues would be underrepresented at the aging conference.
Jim Campbell of the National Association of HIV Over Fifty (NAHOF) brought up some of those issues at the summit. ”HIV and AIDS in the aging community, it’s a very serious subject and it’s being ignored,” he said, pointing to both damage already done, and troubling questions about the future. ”We built families, and those families disappeared almost overnight,” he said of the lack of support structures for gay elders. ”How would you like to be a transgender, post-menopausal woman with HIV trying to find a care provider?” He also asked how the combination of HIV medications might interact with a generation of HIV-positive elders’ arthritis and high-blood-pressure medicines. These are questions, he said, no one really knows the answers to yet.
These, and a host of other gay-related issues, were topics that summit attendees agreed needed to be included at the WHCoA. Instead, their collective fears that GLBT aging issues may be ignored at the federal level — at least till the next WHCoA in 2015 — were realized.
”People were very worried about this long before the conference,” explains Amber Hollibaugh, a senior strategist at the Task Force, who focuses on GLBT-aging issues. “People working on LGBT aging issues were worried if they’d be able to apply as openly LGBT delegates.” Few people are as fluent in this area as Hollibaugh, who adds that other minority groups also feared being ignored at the WHCoA. Make Room for All was an attempt to bring together the groups who felt underrepresented.
”The White House conference had a lot of attendants. It actually had maybe 15 or so LGBT delegates,” she says. ”But only 1 out of 1,200 delegates represented an openly gay organization.”
That representation was further diluted, says Hollibaugh, by the format of the conference. In the past, the WHCoA structure allowed for more debate and introduction of amendments, among other things. ”This time the policy committee said there would be none of that.” Instead, delegates were given lists of pre-set resolutions to prioritize. ”People were beside themselves before the conference even started.”
True to form, it does not seem the federal government will be much of an ally in improving the situation for GLBT elders. And while some gay retirees such as Al and Ed are doing pretty well for themselves, there is definitely room for improvement.
”The issues that confront us around LGBT aging are complicated and interwoven,” says Hollibaugh. ”Within the broad range of issues, there are some issues of particular emphasis, of crisis. Housing concerns are a particular area of worry. The bulk of aging LGBT people are not wealthy…. It’s a mesh of very complicated things. Aging makes people poor, if they weren’t already.”
When it comes to housing for GLBT seniors, Hollibaugh welcomes the number of gay retirement communities popping up from Boston to Santa Fe in Palms-of-Manasota style. But she laments that only West Hollywood, Calif., is seeing subsidized housing for GLBT seniors.
”These things are going on across the country,” she says of gay retirement communities. ”As well, there is a low-income, LGBT-friendly project being built with [U.S. Dept. of Housing and Urban Development] money in Los Angeles. There was enough political clout there. They’re breaking ground. It’s a terrific sign, but we need everything and have almost nothing.
”There aren’t very many [GLBT retirement communities], and they’re expensive,” she continues. ”Lots of queer people are trying to figure it out informally. There are a number of people I know where everyone is trying to buy an acre of land and everyone gets a trailer.” The biggest stipulation, she points out, is that the acre had better be near a gay-friendly hospital. ”Because LGBT elders tend to age alone, we’re more dependent on these systems, the generic places everyone has to go to as they get older. We’re much more dependent on whatever exists, and less likely to access it for fear of being discriminated against. At 76, when you’re dealing with bad knees, homophobia is the last thing you want to deal with.”
You probably won’t want to deal with death, either. But even in death GLBT people have their own crosses to bear, says Kim Acquaviva, an assistant research professor at D.C.’s George Washington University and incoming co-chair of the Lesbian and Gay Aging Issues Network (LGAIN) Leadership Council.
”The differences come out in the lack of recognition of LGBT people and their relationships,” says Acquaviva. “That lack of recognition has dramatic impact on the end-of-life experience…. LGBT seniors may be afraid to access services. They may die without services at all, or grieve alone.”
That lack of recognition may be on the part of care providers, family, or religious and governmental institutions, says Acquaviva, who teaches a class at GW called ”The Business of Dying.” The class, for professional caregivers, examines legal, financial and practical issues of death, like living wills and ceremonies.
”Clinically, [death] is the same. But in terms of impact on spouses left behind, it’s pretty significant,” says Acquaviva, ticking off financial considerations that separate same-sex couples from their heterosexual counterparts, such as Social Security survivor benefits and inheritance taxes on a jointly owned home. ”The hit is huge. A married couple has the grief, the loss, but there is not the added trauma of knowing you could lose everything financially.”
In her experience with gay people at the end of life, she’s found that certain psychologies that affect most people nearing death may be emphasized when homophobia — particularly internalized homophobia — comes into play.
”All of us, regardless of sexual orientation, question our lives,” she explains. ”It’s a natural process. We question the value of our lives, whether we are good or bad. We like to think we’ve worked out all of our issues, but no one has. As people are dying, they end up wrestling with a lot of issues they dealt with their entire lives. They question what will happen after they die. All those foundational experiences that happen as a child, those messages typically come back when we’re older. Like, ‘Am I really going to hell?'”
While wrestling with one’s ”demons” may be hard enough, Acquaviva says fights with family also commonly affect GLBT people — and their survivors — during their dying days.
”When someone is nearing death, it’s a natural process to want to resolve conflict. For some LGBT people, it’s not an option,” she says. “All too often at the end of life there will also be a conflict over decision-making. At the deathbed, [estranged family] may insist on the right to make decisions. There could be a life partner at the bedside, but in the eyes of the law, without the paperwork, ‘family of origin’ trumps ‘partnership.’
“I’ve seen it definitely more than once,” she says. “‘We really want him in the family plot,’ versus ‘He always wanted to be scattered over Key West!”’
As openly gay retirees living in a proudly gay retirement community, Al Usack and Ed Kobee are living the good life that would not have been entirely possible a few years ago. But from seniors in need of gay-friendly assisted living, to surviving spouses trying to hold onto a home, to the HIV-positive senior wondering how his HIV medications will interact with his increasing range of age-related medications, aging is not necessarily a happy stroll into the sunset. Still, things may be looking up. If the maxim of safety in numbers holds, Hollibaugh says the wave of GLBT baby boomers facing retirement will undoubtedly alter the landscape of aging in America.
”There’s been a sort of ‘don’t ask, don’t tell’ policy,” she says of how elderly GLBT people have been treated in settings such as assisted-living facilities. ”Everyone knew they were serving LGBT people, but no one brought it up. Now you’ve got a generation growing into elders who have lived openly LGBT lives. They’re not going to be quiet. The care providers are also worried about it. People are going to demand support groups. They’re not going to keep quiet. The providers know that they’re facing an enormous crisis. They have no cultural competency. It’s not enough to simply be a nice person.”
The Mautner Project
National Gay and Lesbian Task Force
Senior Action in a Gay Environment (SAGE)
Open Circle Communities
Enter April Nelson, national training director at the D.C.-based Mautner Project, the national lesbian health organization. Nelson’s work managing a project called ”Removing the Barriers” is going to have an affect on not just lesbian seniors, but all sexual minority seniors.
”We’ll be piloting the Elder Health Initiative,” she says, introducing a new component of ”Removing the Barriers.” It’s a program by which Mautner employees will travel the country training health-care workers to train others — a.k.a. ”training the trainers” — in their locales in GLBT-senior sensitivity. ”Removing the Barriers” has already been a success in teaching providers to be culturally sensitive to lesbian issues.
”We are in the process of developing the [Elder Health Initiative] at this point,” says Nelson. ”We’re rolling it into ‘Removing the Barriers,’ where we’ve trained about 3,400 providers. We’ll be piloting the Elder Health Initiative probably in early summer, in the D.C. metro area. We’re already doing outreach, and so far there is a lot of receptiveness. Right now, we’re in the curriculum-development stages.”
The trainings, says Nelson, will include things such as educating care-facility staff about legal documents their GLBT residents may need, about visitation issues and partners, and respecting same-sex couples living together in the facility. Aside from a few local organizations, Nelson says Mautner is leading the way in these sorts of trainings, and definitely stands alone at the national level.
”We don’t have any government funding for this,” she adds, explaining that it’s donations rather than tax dollars that are paying for this crucial work. Nelson says the Elder Health Initiative will likely follow the same pattern for teaching general GLBT cultural competence.
”We partner with organizations across the country, 43 grassroots organizations, and we hold ‘trainings of trainers,”’ she says, referring to the trainings already in place. ”Typically, it’s one session. It can be from two hours to a full, eight-hour comprehensive session. A lot of it is general cultural competency. Then we really get into the meat and potatoes of LGBT issues.”
Nelson adds that the program will be tailored for caregivers who are less likely to be familiar with the gay community, rather than those who will be working primarily with GLBT seniors. ”Many in our community won’t have access to [gay-specific facilities], so we’re targeting more mainstream facilities. We’re approaching both the mainstream, corporate facilities, and the publicly funded ones.”
While Nelson and the Mautner Project pave the way for GLBT seniors at the nation’s eldercare institutions, Acquaviva concentrates on what gay people can do themselves to prepare for the last portion of their lives.
”We’re not cool with the whole death thing,” she says. ”We’re a death-fearing culture. It’s a healthy fear for young people to be afraid of being in poor health, but fear of death is kind of a waste of energy. I think AIDS helped the whole community take a greater interest. Within the lesbian community, there are issues of breast cancer. There have been enough issues throughout the community that make us more comfortable talking about death.
”No matter your age or health status, you can sit down and make some decisions about what you want your end of life to be. It’s a really powerful experience. Let your health-care provider know about your support systems — your faith community, your 12-step group — whatever they are. Make sure legal and financial stuff is wrapped up, no matter how young and healthy you are. Make a will. Do you want to be kept alive if there’s no chance you’re going to get better? There are no right or wrong answers, but it’s a tremendously powerful exercise to say, ‘What do I want?’
”The process of looking at the inevitability of death, looking it straight in the face, that’s the first piece,” she advises. ”The second is the LGBT community taking an interest. Only then will we have a really good chance of advocating for end-of-life care. We’re on shaky ground complaining, because we have options. But once the community embraces this, I think it makes it more possible to demand better end-of-life care…. Unless LGBT folks proactively look at end-of-life decision making, others will come in and make our decisions for us.”
She adds that the gay community may also have more friends on the inside than it realizes. ”LGBT folks work in medicine, nursing, health-care work, and they’re in senior positions. These folks have an opportunity to make an impact. I don’t think it’s all doom and gloom. I think we’re at a really good point to demand and receive high-quality services as we’re aging.”
Though there is the obvious connection between aging and dying, the subjective point when one might be considered ”senior” may precede death by decades. That’s a lot of time to fill. Locally, The Center–Home for GLBT in Metro D.C. has launched an effort to help called ”Elder OUTreach.”
Greg Case, chair of the group, proposed it to The Center about a year ago. As a gay man who works as a policy analyst for the U.S. Administration on Aging, it’s no wonder he thought the program might be appropriate. He says The Center’s board did, too.
”They were really into it. It just seemed like a fit. And I’m 54, so I have some selfish motivation for wanting to see things get organized,” he says.
What Elder OUTreach has evolved into, says Case, is a sort of clearinghouse for letting local gay seniors know what is available to them, whether that’s a social club or a culturally competent attorney.
”There are an awful lot of us out there who came out in the ’70s, and we’re aging,” says Case. ”We need a core of advocates to really play a role in advocating for the needs of GLBT elders. And we need a place where they can go when they really don’t know where to begin. That’s really what we’ve coalesced into becoming: a coalition of groups and interested individuals, a one-stop shop. Whatever a person’s needs, we can be that clearinghouse.”
And there are a number of local groups for Elder OUTreach to offer. Just as Al and Ed enjoy the Prime Timers in Florida, the local chapter is going strong. Other options are Metro Retirees and Older Wiser Lesbians (OWLS) with their own social calendars, for starters. Case says he wishes The Center were able to offer some sort of drop-in area for elders, but adds there are no plans for that in the near future. On the other hand, Center President Mike Sessa has said that the organization is considering offering computer classes specifically for seniors if there is interest, at their new ”Cyber Center.”
Regardless of whether a gay senior wants to learn to surf the Web, hit a happy hour with Prime Timers, or move to Florida and buy a rocking chair, aging is inevitable. For the GLBT community, this phase of life comes with its own challenges and rewards. It’s also changing rapidly as more and more GLBT seniors are tapped for AARP membership.
”What makes me hopeful is that the baby-boom generation is the Stonewall generation. I don’t think they’ll tolerate discrimination,” Hollibaugh says. ”I’m about to become 60. I’m exactly the demographic, and I don’t have any money. I have no retirement, no pension plan, no nothing. But if you think I’m going to go to a nursing home and be treated badly, I will not do it. I didn’t spend my life as a social-justice advocate to be quiet as an old person because I’m terrified.
”This is a crisis in America that is both invisible and coming right down the pike. We both share the crisis of the demographic explosion, and remain without political power in the institutions that represent the aging world. I think we’re going to press our own institutions and organizations and demand to be included at the table in ways that are specific to us.”