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Women with HIV, after years of isolation, coming out of shadows

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Patti Radigan kisses daughter Angelica after a memorial in San Francisco’s Castro to remember those who died of AIDS.

By Erin Allday

Anita Schools wakes at dawn most days, though she usually lazes in bed, watching videos on her phone, until she has to get up to take the HIV meds that keep her alive. The morning solitude ends abruptly when her granddaughter bursts in and they curl up, bonding over graham crackers.

Schools, 59, lives in Emeryville near the foot of the Bay Bridge, walking distance from a Nordstrom Rack and other big chain stores she can’t afford. Off and on since April, her granddaughter has lived there too, sleeping on a blow-up mattress with Schools’ daughter and son-in-law and another grandchild.

Five is too many for the one-bedroom apartment. But they’re family. They kept her going during the worst times, and that she can help them now is a blessing.

Nearly 20 years ago, when Schools was diagnosed with HIV, it was her daughter Bonnie — then 12 and living in foster care — who gave her hope, saying, “Mama, you don’t have to worry. You’re not going to die, you’re going to be able to live a long, long time.”

“It was her that gave me the push and the courage to keep on,” Schools said.

She had contracted HIV from a man who’d been in jail, who beat her repeatedly until she fled. By then she’d already left another abusive relationship and lost all four of her daughters to child protective services. HIV was just one more burden.

At the time, the disease was a death sentence. That Schools is still here — helping her family, getting to know her grandchildren — is wonderful, she said. But for her, as with tens of thousands of others who have lived two decades or more with HIV, survival comes with its own hardships.

Gay men made up the bulk of the casualties of the early AIDS epidemic, and as the male survivors grow older, they’re dealing with profound complications, including physical and mental health problems. But the women have their own loads to bear.

Whereas gay men were at risk simply by being gay, women often were infected through intravenous drug use or sex work, or by male partners who lied about having unsafe sex with other men. The same issues that put them at risk for HIV made their very survival a challenge.

Today, many women like Schools who are long-term survivors cope with challenges caused or compounded by HIV: financial and housing insecurity, depression and anxiety, physical disability and emotional isolation.

“We’re talking about mostly women of color, living in poverty,” said Naina Khanna, executive director of Oakland’s Positive Women’s Network, a national advocacy group for women with HIV. “And there’s not really a social safety net for them. Gay men diagnosed with HIV already historically had a built-in community to lean on. Women tend to be more isolated around their diagnosis.”

There are far fewer women aging with HIV than men. In San Francisco, nearly 10,000 people age 50 or older are living with HIV; about 500 are women. Not all women survivors have histories of trauma and abuse, of course, and many have done well in spite of their diagnosis.

But studies have found that women with HIV are more than twice as likely as the average American woman to have suffered domestic violence. They have higher rates of mental illness and substance abuse.

What keeps them going now, decades after their diagnoses, varies widely. For some, connections with their families, especially their now-adult children, are critical. For others, HIV advocacy work keeps them motivated and hopeful.

Patti Radigan (righ) instructs daughter Angelica and Angelica’s boyfriend, Jayson Cabanas, on preparing green beans for Thanksgiving while Roman Tom Pierce, 8, watches.

Patti Radigan was living in a cardboard box on South Van Ness Avenue in San Francisco when she tested positive in 1992. By then, she’d lost her husband to a heart attack while a young mother, and not long after that she lost her daughter, too, when her drug use got out of control and her sister-in-law took in the child.

She turned to prostitution in the late 1980s to support a heroin addiction. She’d heard of HIV by then and knew it was deadly. She’d seen people on the streets in the Mission where she worked, wasting away and then disappearing altogether. But she still thought of it as something that affected gay men, not women, even those living on the margins.

Women then, and now, were much more likely than men to contract HIV from intravenous drug use rather than sex — though in Radigan’s case, it could have been either. IV drug use is the cause of transmission for nearly half of all women, according to San Francisco public health reports. It’s the cause for less than 20 percent for men.

Still, when Radigan finally got tested, it wasn’t because she was worried she might be positive, but because the clinic was offering subjects $20. She needed the cash for drugs.

She was scared enough after the diagnosis — and then she got pregnant. It was the early 1990s, and HIV experts at UCSF were just starting to believe they could finesse women through pregnancy and help them deliver healthy babies. Today, it’s widely understood that women with HIV can safely have children; San Francisco hasn’t seen a baby born with HIV since 2004.

But in the 1990s, getting pregnant was considered selfish — even if the baby survived, its mother most certainly wouldn’t live long enough to raise her. For women infected at the time, having children was something else they had to give up.

And so Radigan had an abortion. But she got pregnant again in 1995, and she was desperate to have this child. She was living by then with 10 gay men in a boarding house for recovering addicts. Bracing herself for an onslaught of criticism, she told her housemates. First they were quiet, then someone yelled, “Oh my God, we’re having a baby!”

“It was like having 10 big brothers,” Radigan said, smiling at the memory. Buoyed by their support, she kept the pregnancy and had a healthy girl.

Radigan is 59 now; her daughter, Angelica Tom, is 20. They both live in San Francisco after moving to the East Coast for a while. It was because of her daughter that Radigan stayed sober, that she consistently took her meds, and that she went back to school to tend to her future.

For a long time she told people she just wanted to live long enough to see her daughter graduate high school. Now her daughter is in art school and Radigan is healthy enough to hold a part-time job, to lead yoga classes on weekends, to go out with friends for a Friday night concert.

“Because of HIV, I thought I was never going to do a lot of things,” Radigan said. “The universe is aligning for me. And now I feel like I deserve it. For a long time, I didn’t feel like I deserved anything.”

Anita Schools, who says she is most troubled by finances, listens to an HIV-positive woman speak about her experiences and fears at an Oakland support group that Schools organized.

Anita Schools got tested for HIV because her ex-boyfriend kept telling her she should. That should have been a warning sign, she knows now.

She was first diagnosed in 1998 at a neighborhood clinic in Oakland, but it took two more tests at San Francisco General Hospital for her to accept she was positive. People told her that HIV wasn’t necessarily fatal, but she had trouble believing she was going to live. All she could think was, “Why me? What did I do?”

It was only after her daughter Bonnie reassured her that Schools started to think beyond the immediate anxiety and anger. She joined a support group for HIV-positive women, finding comfort in their stories and shared experiences. Ten years later, she was leading her own group.

She’s never had problems with drugs or alcohol, and she has a network of friends and family for emotional support, she said. Even the HIV hasn’t hit her too hard, physically, though the drugs to treat it have attacked her kidneys, leaving her ill and fatigued.

Like so many of the women she advises in her support group, Schools is most troubled by her finances. She gets by on Social Security and has bounced among Section 8 housing all over the Bay Area for most of her adult life.

Schools’ current apartment is supposed to be permanent, but she worries she could lose it if her daughter’s family stays with her too long. So earlier this month they moved out and are now sleeping in homeless shelters or, some nights, in their car. She hates letting them leave but doesn’t feel she has any other choice.

Reports show that women with HIV are far more likely to live in poverty than men. Khanna, with the Positive Women’s Network, said surveys of her members found that 85 percent make less than $25,000 a year, and roughly half take home less than $10,000.

Schools can’t always afford the bus or BART tickets she needs to get to doctor appointments and support group meetings, relying instead on rides from friends — or sometimes skipping events altogether. She gets her food primarily from food banks. Her wardrobe is dominated by T-shirts she gets from the HIV organizations with which she volunteers.

“With Social Security, $889 a month, that ain’t enough,” Schools said. “You got to pay your rent, and then PG&E, and then you got to pay your cell phone, buy clothes — it’s all hard.”

At a time when other women her age might be thinking about retirement or at least slowing down, advocacy work has taken over Schools’ life. She speaks out for women with HIV and their needs, demanding financial and health resources for them. In her support group and at AIDS conferences, she offers her story of survival as a sort of jagged road map for other women struggling to navigate the complex warren of services they’ll need to get by.

The work gives her confidence and purpose. She feels she can directly influence women’s lives in a way that seemed beyond her when she was young, unemployed and directionless.

“As long as I’m getting help and support,” Schools said, “I want to help other women — help them get somewhere.”

Billie Cooper is tall and striking, loud and brash. Her makeup is polished, her nails flawless. She is, she says with a booming laugh that makes heads turn, “the ultimate senior woman.”

For Cooper, 58, HIV was transformative. Like Radigan, she had to find her way out from under addiction and prostitution to get healthy, and stay healthy. Like Schools, she came to understand the importance of role-modeling and advocacy.

Cooper arrived in San Francisco in the summer of 1980 — almost a year to the day before the first reports of HIV surfaced in the United States. She was fresh out of the Navy and eager to explore her gender identity and sexuality in San Francisco’s burgeoning gay and transgender communities.

Growing up in Philadelphia, she’d known she was different from the boys around her, though it was decades before she found the language to express it and identified as a transgender woman. But seeing the “divas on Post Street, the ladies in the Tenderloin, the transsexual women prostituting on Eddy” — Cooper was awestruck.

She slipped quickly into prostitution and drug use. When she tested positive in 1985, she wasn’t surprised and barely wasted a thought worrying about what it meant for her future — or whether she’d have any future at all.

“I felt as though I still had to keep it moving,” Cooper said. “I didn’t slow down and cry or nothing.”

Transgender women have always been at heightened risk of HIV. Some studies have found that more than 1 in 5 transgender women is infected, and today about 340 HIV-positive trans women live in San Francisco.

What makes them more vulnerable is complicated. Trans women often have less access to health care and less stable housing than others, and they face higher rates of drug addiction and sexual violence, all of which are associated with risk of HIV infection.

Cooper was homeless off and on through the 1980s and ’90s, trapped in a world of drugs and sex work that felt glamorous at the time but in hindsight was crippling. “I was doing things out of loneliness,” she said, “and I was doing things to feel love. That’s why I prostituted, why I did drugs.”

She began to clean up around 2000, though it would take five or six years to fully quit using. She found a permanent place to live. She collected Social Security. She started working in support services for other transgender women battling HIV. In 2013, she founded TransLife, a support group at the San Francisco AIDS Foundation.

“I was coming out as the activist, the warrior, the determined woman I was always meant to be,” she said.

Cooper never developed any of the common, often fatal complications of HIV — including opportunistic infections like pneumonia — that killed millions in the 1980s and 1990s. But she does have neuropathy, an HIV-related nerve condition that causes a constant pins-and-needles sensation in her feet and legs and sometimes makes it hard to walk.

Far more traumatic for her was her cancer diagnosis in 2006. The cancer, which may have been related to HIV, was isolated to her left eye, but after traditional therapies failed, the eye was surgically removed on Thanksgiving Day in 2009.

The cancer and the loss of her eye was a devastating setback for a woman who had always focused on her appearance, on looking as gorgeous as the transgender women she so admired in the Tenderloin, on being loved and wanted for her beauty.

Rising from that loss has been difficult, she said. And she’s continued to suffer new health problems, including blood clots in one of her legs. Recently, she’s fallen several times, in frightening episodes that may be related to the clots, the HIV or something else entirely.

Since Thanksgiving she’s been in and out of the hospital, and though she tries to stay upbeat, it’s clearly trying her patience.

But if HIV and cancer and everything else have tested Cooper’s survival in ways she never anticipated, these trials also have strengthened her resolve. She’s becoming the person she always wanted to be.

“A week before they took my eye, I got my breasts,” she said coyly one recent afternoon, thrusting out her chest. Behind the sunglasses she wears almost constantly now, she was smiling and crying, all at once.

Aging with HIV has been strangely calming, in some ways, giving her a confidence that in her wild youth was elusive.

Now she exults in being a respected elder in the HIV and transgender communities. She loves it when people open doors for her or help her cross the street, offer to carry her bags or give up a seat on a bus.

Simply, she said, “I love being Ms. Billie Cooper.”

Complete Article HERE!

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Why Straight Rural Men Have Gay ‘Bud-Sex’ With Each Other

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A lot of men have sex with other men but don’t identify as gay or bisexual. A subset of these men who have sex with men, or MSM, live lives that are, in all respects other than their occasional homosexual encounters, quite straight and traditionally masculine — they have wives and families, they embrace various masculine norms, and so on. They are able to, in effect, compartmentalize an aspect of their sex lives in a way that prevents it from blurring into or complicating their more public identities. Sociologists are quite interested in this phenomenon because it can tell us a lot about how humans interpret thorny questions of identity and sexual desire and cultural expectations.

Last year, NYU Press published the fascinating book Not Gay: Sex Between Straight White Men by the University of California, Riverside, gender and sexuality professor Jane Ward. In it, Ward explored various subcultures in which what could be called “straight homosexual sex” abounds — not just in the ones you’d expect, like the military and fraternities, but also biker gangs and conservative suburban neighborhoods — to better understand how the participants in these encounters experienced and explained their attractions, identities, and rendezvous. But not all straight MSM have gotten the same level of research attention. One relatively neglected such group, argues the University of Oregon sociology doctoral student Tony Silva in a new paper in Gender & Society, is rural, white, straight men (well, neglected if you set aside Brokeback Mountain).

Silva sought to find out more about these men, so he recruited 19 from men-for-men casual-encounters boards on Craigslist and interviewed them, for about an hour and a half each, about their sexual habits, lives, and senses of identity. All were from rural areas of Missouri, Illinois, Oregon, Washington, or Idaho, places known for their “social conservatism and predominant white populations.” The sample skewed a bit on the older side, with 14 of the 19 men in their 50s or older, and most identified exclusively as exclusively or mostly straight, with a few responses along the lines of “Straight but bi, but more straight.”

Since this is a qualitative rather than a quantitative study, it’s important to recognize that the particular men recruited by Silva weren’t necessarily representative of, well, anything. These were just the guys who agreed to participate in an academic’s research project after they saw an ad for it on Craigslist. But the point of Silva’s project was less to draw any sweeping conclusions about either this subset of straight MSM, or the population as a whole, than to listen to their stories and compare them to the narratives uncovered by Ward and various other researchers.

Specifically, Silva was trying to understand better the interplay between “normative rural masculinity” — the set of mores and norms that defines what it means to be a rural man — and these men’s sexual encounters. In doing so, he introduces a really interesting and catchy concept, “bud-sex”:

Ward (2015) examines dudesex, a type of male–male sex that white, masculine, straight men in urban or military contexts frame as a way to bond and build masculinity with other, similar “bros.” Carrillo and Hoffman (2016) refer to their primarily urban participants as heteroflexible, given that they were exclusively or primarily attracted to women. While the participants in this study share overlap with those groups, they also frame their same-sex sex in subtly different ways: not as an opportunity to bond with urban “bros,” and only sometimes—but not always—as a novel sexual pursuit, given that they had sexual attractions all across the spectrum. Instead, as Silva (forthcoming) explores, the participants reinforced their straightness through unconventional interpretations of same-sex sex: as “helpin’ a buddy out,” relieving “urges,” acting on sexual desires for men without sexual attractions to them, relieving general sexual needs, and/or a way to act on sexual attractions. “Bud-sex” captures these interpretations, as well as how the participants had sex and with whom they partnered. The specific type of sex the participants had with other men—bud-sex—cemented their rural masculinity and heterosexuality, and distinguishes them from other MSM.

This idea of homosexual sex cementing heterosexuality and traditional, rural masculinity certainly feels counterintuitive, but it clicks a little once you read some of the specific findings from Silva’s interviews. The most important thing to keep in mind here is that rural masculinity is “[c]entral to the men’s self-understanding.” Quoting another researcher, Silva notes that it guides their “thoughts, tastes, and practices. It provides them with their fundamental sense of self; it structures how they understand the world around them; and it influences how they codify sameness and difference.” As with just about all straight MSM, there’s a tension at work: How can these men do what they’re doing without it threatening parts of their identity that feel vital to who they are?

In some of the subcultures Ward studied, straight MSM were able to reinterpret homosexual identity as actually strengthening their heterosexual identities. So it was with Silva’s subjects as well — they found ways to cast their homosexual liaisons as reaffirming their rural masculinity. One way they did so was by seeking out partners who were similar to them. “This is a key element of bud-sex,” writes Silva. “Partnering with other men similarly privileged on several intersecting axes—gender, race, and sexual identity—allowed the participants to normalize and authenticate their sexual experiences as normatively masculine.” In other words: If you, a straight guy from the country, once in a while have sex with other straight guys from the country, it doesn’t threaten your straight, rural identity as much as it would if instead you, for example, traveled to the nearest major metro area and tried to pick up dudes at a gay bar. You’re not the sort of man who would go to a gay bar — you’re not gay!

It’s difficult here not to slip into the old middle-school joke of “It’s not gay if …” — “It’s not gay” if your eyes are closed, or the lights are off, or you’re best friends — but that’s actually what the men in Silva’s study did, in a sense:

As Cain [one of the interview subjects] said, “I’m really not drawn to what I would consider really effeminate faggot type[s],” but he does “like the masculine looking guy who maybe is more bi.” Similarly, Matt (60) explained, “If they’re too flamboyant they just turn me off,” and Jack noted, “Femininity in a man is a turn off.” Ryan (60) explained, “I’m not comfortable around femme” and “masculinity is what attracts me,” while David shared that “Femme guys don’t do anything for me at all, in fact actually I don’t care for ’em.” Jon shared, “I don’t really like flamin’ queers.” Mike (50) similarly said, “I don’t want the effeminate ones, I want the manly guys … If I wanted someone that acts girlish, I got a wife at home.” Jeff (38) prefers masculinity because “I guess I perceive men who are feminine want to hang out … have companionship, and make it last two or three hours.”

In other words: It’s not gay if the guy you’re having sex with doesn’t seem gay at all. Or consider the preferences of Marcus, another one of Silva’s interview subjects:

A guy that I would consider more like me, that gets blowjobs from guys every once in a while, doesn’t do it every day. I know that there are a lot of guys out there that are like me … they’re manly guys, and doing manly stuff, and just happen to have oral sex with men every once in a while [chuckles]. So, that’s why I kinda prefer those types of guys … It [also] seems that … more masculine guys wouldn’t harass me, I guess, hound me all the time, send me 1000 emails, “Hey, you want to get together today … hey, what about now.” And there’s a thought in my head that a more feminine or gay guy would want me to come around more. […] Straight guys, I think I identify with them more because that’s kinda, like [how] I feel myself. And bi guys, the same way. We can talk about women, there [have] been times where we’ve watched hetero porn, before we got started or whatever, so I kinda prefer that. [And] because I’m not attracted, it’s very off-putting when somebody acts gay, and I feel like a lot of gay guys, just kinda put off that gay vibe, I’ll call it, I guess, and that’s very off-putting to me.

This, of course, is similar to the way many straight men talk about women — it’s nice to have them around and it’s (of course) great to have sex with them, but they’re so clingy. Overall, it’s just more fun to hang out around masculine guys who share your straight-guy preferences and vocabulary, and who are less emotionally demanding.

One way to interpret this is as defensiveness, of course — these men aren’t actually straight, but identify that way for a number of reasons, including “internalized heterosexism, participation in other-sex marriage and childrearing [which could be complicated if they came out as bi or gay], and enjoyment of straight privilege and culture,” writes Silva. After Jane Ward’s book came out last year, Rich Juzwiak laid out a critique in Gawker that I also saw in many of the responses to my Q&A with her: While Ward sidestepped the question of her subjects’ “actual” sexual orientations — “I am not concerned with whether the men I describe in this book are ‘really’ straight or gay,” she wrote — it should matter. As Juzwiak put it: “Given the cultural incentives that remain for a straight-seeming gay, given the long-road to self-acceptance that makes many feel incapable or fearful of honestly answering questions about identity—which would undoubtedly alter the often vague data that provide the basis for Ward’s arguments—it seems that one should care about the wide canyon between what men claim they are and what they actually are.” In other words, Ward sidestepped an important political and rights minefield by taking her subjects’ claims about their sexuality more or less at face value.

There are certainly some good reasons for sociologists and others to not examine individuals’ claims about their identities too critically. But still: Juzwiak’s critique is important, and it looms large in the background of one particular segment of Silva’s paper. Actually, it turned out, some of Silva’s subjects really weren’t all that opposed to a certain level of deeper engagement with their bud-sex buds, at least when it came to their “regulars,” or the men they hooked up with habitually:

While relationships with regulars were free of romance and deep emotional ties, they were not necessarily devoid of feeling; participants enjoyed regulars for multiple reasons: convenience, comfort, sexual compatibility, or even friendship. Pat described a typical meetup with his regular: “We talk for an hour or so, over coffee … then we’ll go get a blowjob and then, part our ways.” Similarly, Richard noted, “Sex is a very small part of our relationship. It’s more friends, we discuss politics … all sorts of shit.” Likewise, with several of his regulars Billy noted, “I go on road trips, drink beer, go down to the city [to] look at chicks, go out and eat, shoot pool, I got one friend I hike with. It normally leads to sex, but we go out and do activities other than we meet and suck.” While Kevin noted that his regular relationship “has no emotional connection at all,” it also has a friendship-like quality, as evidenced by occasional visits and sleepovers despite almost 100 miles of distance. Similarly, David noted, “If my wife’s gone for a weekend … I’ll go to his place and spend a night or two with him … we obviously do things other than sex, so yeah we go to dinner, go out and go shopping, stuff like that.” Jack explained that with his regular “we connected on Craigslist … [and] became good friends, in addition to havin’ sex … we just made a connection … But there was no love at all.” Thus, bud-sex is predicated on rejecting romantic attachment and deep emotional ties, but not all emotion.

Whatever else is going on here, clearly these men are getting some companionship out of these relationships. It isn’t just about sex if you make a point of getting coffee, and especially if you spend nights together, go shopping or out to dinner, and so on. But there are sturdy incentives in place for them to not take that step of identifying, or identifying fully, as gay or bi. Instead, they frame their bud-sex, even when it’s accompanied by other forms of intimacy, in a way that reinforces their rural, straight masculinity.

It’s important to note that this isn’t some rational decision where the men sit down, list the pros and cons, and say, “Well, I guess coming out just won’t maximize my happiness and well-being.” It’s more subtle than that, given the osmosis-like way we all absorb social norms and mores. In all likelihood, when Silva’s subjects say they’re straight, they mean it: That’s how they feel. But it’s hard not to get the sense that maybe some of them would be happier, or would have made different life decisions, if they had had access to a different, less constricted vocabulary to describe what they want — and who they are.

Complete Article HERE!

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The Vulnerable Group Sex Ed Completely Ignores & Why That’s So Dangerous

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By Hallie Levine

When Katie, 36, was identified as having an intellectual disability as a young child after scoring below 70 on an IQ test, her parents were told that she would never learn to read and would spend her days in a sheltered workshop. Today she is a single mum to an 8-year-old son, drives a car, and works at a local restaurant as a waitress. She blasted through society’s expectations of her — including the expectation that she would never have sex.

sex-edKatie never had a formal sexual education: What she learned came straight from her legal guardian, Pam, who explained to her the importance of safe sex and waiting until she was ready. “I waited until I was 19, which is a lot later than some of my friends,” Katie says. Still, like many women with disabilities, she admits to being pressured into sex her first time, something she regrets. “I don’t think I was ready,” she says. “It actually was with someone who wasn’t my boyfriend. He was cute, and he wanted to have sex, so I said I wanted it, but at the last minute I changed my mind and it happened anyway. I just felt really stupid and uncomfortable afterwards.” She never told her boyfriend what happened.

Katie’s experience is certainly not unique: In the general population, one out of six women has survived a rape or attempted rape, according to statistics from RAINN. But for women with intellectual disabilities (ID), it’s even more sobering: About 25% of females with ID referred for birth control had a history of sexual violence, while other research suggests that almost half of people with ID will experience at least 10 sexually abusive incidents in their lifetime, according to The Arc, an advocacy organisation for people with intellectual disabilities.

When it comes to their sex lives, research shows many women with intellectual disability don’t associate sex with pleasure, and tend to play a passive role, more directed to “pleasuring the penis of their sex partner” than their own enjoyment, according to a 2015 study published in the Journal of Sex Research. They’re more likely to experience feelings of depression and guilt after sex. They’re at a greater risk for early sexual activity and early pregnancy. They’re also more likely to get an STD: 26% of cognitively impaired female high schoolers report having one, compared to 10% of their typical peers, according to a study published in the Journal of Adolescent Health.

Katie, for example, contracted herpes in her early 20s, from having sex with another man (she says none of her partners have had an intellectual disability). “I was hurt and itching down there, so I went to the doctor, who told me I had this bad disease,” she recalls. She was so upset she confronted her partner: “I went to his office crying, but he denied everything,” she remembers.

Given all of this, you’d think public schools — which are in charge of educating kids with intellectual disability — would be making sure it’s part of every child’s curriculum. But paradoxically, kids with ID are often excluded from sexual education classes, including STD and pregnancy prevention. “People with intellectual disabilities don’t get sexual education,” says Julie Ann Petty, a safety and sexual violence educator at the University of Arkansas. Petty, who has cerebral palsy herself, has worked extensively with adults who have intellectual disabilities (while not all people living with cerebral palsy have intellectual disabilities, they face many of the same barriers to sexual education). “This [lack of education] is due to the central norms we still have when thinking about people with ID: They need to be protected; they are not sexual beings; they don’t need any sex-related information. Disability rights advocates have worked hard over the last 20-some years to get rid of those stereotypes, but they are still out there.

“I work with adults with disabilities all the time, and the attitudes of the caretakers and staff around them are, ‘Oh, our people do not do that stuff. Our people do not think about sex,’” Petty says. “It’s tragic, and really sets this vulnerable population up for abuse: if they don’t have knowledge about their private body parts, for example, how are they going to know if someone is doing something inappropriate?”

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Historically, individuals with intellectual disabilities were marginalised, shunted off to institutions, and forcibly sterilised. That all began to change in the 1950s and 1960s, with the push by parents and civil rights advocates to keep kids with ID at home and mainstream them into regular education environments. But while significant progress has been made over the last half century in terms of increased educational and employment opportunities, when it comes to sex ed, disability rights advocates say we’re still far, far behind.

“What I find is shocking is I’ll go in to teach a workshop on human sexuality to a group of teenagers or young adults with cognitive disabilities, and I find that their knowledge is no different than what [young people with ID would have known] back in the 1970s,” says Katherine McLaughlin, who has worked as a sexuality educator and trainer for Planned Parenthood of Northern New England for over 20 years and is the co-author of the curriculum guide “Sexuality Education for Adults with Developmental Disabilities.” “They tell me they were taken out of their mainstream health classes in junior high and high school during the sexual education part, because their teachers don’t think they need it. I’ve worked with adults in their 50s who have no idea how babies are made. It’s mind blowing.”

“There’s this belief that they don’t need it, or that they won’t understand it, or it will actually make them more likely to be sexually active or act inappropriately,” adds Pam Malin, VAWA Project Coordinator, Disability Rights Wisconsin. “But research shows that actually the opposite is true.”

Indeed, as the mother of a young girl with Down syndrome, I’m personally struck by how asexualised people with intellectual disabilities still are. Case in point: When fashion model Madeline Stuart — who has Down syndrome — posted pictures of herself online in a bikini, the Internet exploded with commentary, some positive, some negative. “I think it is time people realised that people with Down syndrome can be sexy and beautiful and should be celebrated,” Madeline’s mother, Roseanne, told ABC News. Yet somehow, it’s still scandalous.

Ironically, sometimes the biggest barrier comes from parents of people with ID — which hits close to home for me. “A lot of parents still treat their kids’ sexuality as taboo,” says Malin. She recalls one situation where a mom in one of her parent support groups got attacked by other parents: “She was very open about masturbation with her adolescent son, and actually left a pail on his doorknob so he could masturbate in a sock and then put it in the pail — she’d wash it with no questions asked. I applauded it: I thought it was an excellent way to give her son some freedom and choice around his sexuality. But it made the other parents incredibly uncomfortable.”

Sometimes, parents are simply not comfortable talking about sexuality, because they don’t know how to start the conversation, adds Malin. Several studies have also found that both staff and family generally encourage friendship, not sexual relationships. “It’s a lot of denial: The parents don’t want to admit that their children are maturing emotionally and developing adult feelings,” says Malin. An Australian study published in the journal Sexuality & Disability found that couples with intellectual disability were simply never left alone, and thus never allowed to engage in sexual behaviour.

I’m doing my best — but despite all my good intentions, it’s certainly not been easy. This fall, I sat down to tell my three small children about the birds and the bees. My two boys — in second grade and kindergarten — got into the conversation right away, and as we began talking I realised it wasn’t a surprise to them; at a young age, they’d already picked up some of the basic facts from playmates. But my daughter, my eldest, was a whole different story. Jo Jo is in third grade and has Down syndrome, so she’s delayed, both with language and cognition. And because of her ID, and all the risk that goes along with it, she was the kid I was most worried about. So it was disheartening to see her complete lack of interest in the conversation, wandering off to her iPad or turning on the radio. Every time I would try to coax her back to our little group, she would shout, “No!”

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Lisa Shevin, whose 30-year-old daughter, Chani, has Down syndrome, says she’s never had a heart-to-heart with her daughter about sexuality. “The problem is, Chani’s not very verbal, so I’m never quite sure what she grasps,” says Shevin, who lives in Oak Park, a suburb of Detroit. While Chani has a “beau” at work, another young man who also has an intellectual disability, “They’re never, ever left alone, so they never have an opportunity to follow through on anything,” says Shevin. “I feel so frustrated as her mother, because I want to talk to her about sex ed, but I just don’t know how. I’ve never gotten any guidance from anyone. But just because my daughter is cognitively impaired, it doesn’t mean she doesn’t have the same hormones as any other woman her age. You can’t just sweep it under the rug and assume she doesn’t understand.”

In one interesting twist, sex educators say they tend to see more women with intellectual disability than men being sexually aggressive. “I worked with a young woman in her late 20s who would develop crushes on attractive male staff members at her group home,” recalls Malin. “She would try to flirt, and the guys would play it off as ‘hah hah funny,’ but eventually she called police and accused one of them of rape.” While the police investigated and eventually dropped charges, Malin was brought in to work with her: “We had a long conversation about where this had come from, and she kept talking about Beau and Hope from ‘Days of Our Lives’,” Malin recalls. “It turned out she had gotten so assertive with one of the male staff that he’d very adamantly said no to her, but her understanding of rape boiled down to gleaning bits from soap operas, and she thought that if a man in any situation acted forcefully with a woman then it was sexual assault.”

While most cases don’t escalate to this point, sometimes people with intellectual disability can exhibit behavior that causes problems: Chani, for example, was kicked out of sleep-away camp a few years ago after staff complained that she was hugging too many of her male counsellors. “She’d develop little crushes on them, and she never tried anything further than putting her arms around them and wanting to hang out with them all the time, but it made staff uncomfortable,” Shevin recalls. Chani’s since found a new camp where counsellors take her behaviour in stride: “They’ve found a way to work with it, so if she doesn’t want to do an activity, they’ll convince her by telling her afterwards she can spend time with Noah, one of the male counsellors she has a crush on,” says Shevin. (At the end of the summer, Noah gave Chani a tiara, which remains one of her prize possessions.)

So what can be done? Sadly, even if someone with ID is able to get into a sexual education program, the existing options tend to severely miss the mark: A 2015 study published in the Journal for Sex Research analysed 20 articles on sexual education programs aimed at this group and found most fell far short, mainly because people who unable to generalise what they learned in the program to an outside setting. “This is a major problem for individuals who are cognitively challenged: They have difficulty applying a skill or knowledge they get in one setting to somewhere else,” explains McLaughlin. “But just like everywhere else, most get it eventually — it just takes a lot of time, repetition, and patience.”

In the meantime, for parents like me, McLaughlin has a few tips. “Take advantage of teachable moments,” she says. “If a family member is pregnant, talk about it with them. If you’re watching a TV show together and there’s sexual content, don’t just sweep it under the rug — try to break down the issues with them.” It’s also important to be as concrete as possible: “Since people with ID have trouble generalising, use anatomically correct dolls or photographs whenever possible, especially when describing body parts,” she says.

Some local disability organisations also offer workshops for both teenagers and adults with intellectual disabilities. And the Special Olympics offers protective behaviours training for volunteers. But at this point there’s a dearth of legislation and organisations that are fighting for better sexual education, which means parents like myself have to take the initiative when it comes to educating our kids about their burgeoning sexuality.

It’s a responsibility I’m taking to heart in my own life. Now, every night when I bathe my daughter, we make a game of identifying body parts, some of which are private, and I explain to her that no one touches those areas except for mommy or a doctor. Recently, she’s started humping objects at home like the arm of the sofa, and I’ve begun explaining to her that if she wants to do something like that, it needs to be in the privacy of her own room. It’s taken a lot of repeating and reinforcing, but she seems to be getting the message. I have no doubt that — like every other skill she’s mastered, such as reading or writing her name or potty training — it will take time, but she’ll get there.

As for Katie, with age and experience, she’s become more comfortable with her sexuality. “It took me a while, but I’m confident in myself,” she says. “I am one hundred percent okay saying no to someone — if I’m pressured, there’s no way in the world now I’ll do anything with anybody. But that means when it does happen, it feels right.”

Complete Article HERE!

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Let’s Talk About Sex

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Overcoming Barriers to Discussing Sexuality and Empowering Adolescent Girls

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It can be difficult to offer sexuality education to adolescents anywhere—but it’s especially difficult in deeply conservative communities around the world, where sexuality remains a taboo topic. At “Let’s Talk About Sex,” a day-long event organized by GreeneWorks, American Jewish World Service, CARE and International Women’s Health Coalition, participants got an opportunity to explore this challenge through a mix of discussion, movement and performance.

It was a unique way to kick off the 2016 Association for Women’s Rights in Development (AWID) forum, which brought together feminists—1,800 of them, from more than 30 countries—to strategize and connect in Bahia, Brazil this September. Among the participants were representatives from AJWS grantee organizations working to advance gender equality in India.

“As researchers and practitioners, we often operate inside our heads,” said Meg Greene of GreeneWorks. She noted that many people working with international nonprofit organizations tend to resist meaningful discussions of sexuality out of sheer discomfort. “This is a very embodied challenge . . . what can we learn by embodying our experience of it?”

Margot Greenlee of BodyWise Dance began the day by leading the group through a series of warm-up exercises set to samba. Participants drummed on their knees and moved to the music. One woman remarked that the experience was “better than coffee,” and it was followed by a discussion of the reasons why everyone had come.

BodyWise Dance company performs a scene based on the group’s conversations.

BodyWise Dance company performs a scene based on the group’s conversations.

One participant said her work with adolescent girls, while deeply meaningful, was sometimes sad and frustrating—in part because the girls were reaching an age when sexuality was becoming part of their lives, and she often felt it impossible to discuss their questions without risking anger from the community. Another woman agreed; she explained that even when her organization tried to educate young people on sexuality, the curricula wound up focusing more on topics related to anatomy and hygiene, like menstruation. She and others wanted to explore new strategies for addressing sexuality more openly.

The rest of the day alternated between performances by the BodyWise company, participatory dance exercises and more cerebral reflections on participants’ respective work. Conversation started off with the social norms and experiences that shape people’s understanding of sexuality and gender roles—and how some people’s beliefs lead to serious barriers that keep girls and young women from exercising their rights.

For example: Alejandra Colom, who works with Population Council, talked about a rural community in Guatemala that’s ruled by drug traffickers. She said many people there view early and child marriage as something that happens simply because, in their view, “it’s the only way to stop bad things that happen to girls.” The community thinks of marriage as a way of increasing the security of girls in a place where sexual violence is commonplace.

Alejandra Colom, left, of the Population Council in Guatemala.

Alejandra Colom, left, of the Population Council in Guatemala.

To begin expanding the options and information available to local girls, Population Council hired a young woman who served as a mentor. She met with about 40 girls once a week and spoke to them about topics like sexuality and gender-based violence. Alejandra said the mentor wanted girls to understand their rights—to know that “it’s not normal that if you pass man on road and he fancies you, he thinks he has the right to rape you.”

Once the community heard what she was teaching, Alejandra said, some of the men started proclaiming the education she provided “dangerous.” The real message: women who stand up for their rights will face danger. Young men started harassing the mentor and interrupting her class. One day, a truck followed behind her motorbike, pulling closer and closer. Then the men inside opened fire.

The bullets missed the mentor. But her days with that community were through. She decided not to go to the police. Everyone knew the drug traffickers were ruling the area, not the government. Alejandra said the young woman told her: “The moment they know that I’m doing something about this, they’ll come back and kill every single member of my family.”

This was just one example of the many challenges the group shared. The conversation also unearthed the strategies participants use to continue their work in places that don’t exactly welcome it. Several people at the event spoke about how collectives—organized groups of girls who learn to advocate for their rights together—can be so important for negotiating with communities when tough situations arise. They reminded the group that there’s power in numbers.

On the other hand, participants pointed out, girls need the freedom to make the decisions that are best for their individual situations. In many places, that means choosing between a few very limited options. Archana Dwivedi of Nirantar—an AJWS grantee—spoke about her organization’s research in India, which found that many teenage boys and girls are actually choosing to get married. They often view early marriage as less oppressive than staying at home with their parents, who are incredibly strict.

In order to address the limitations that many girls and young women face, AJWS’s grantees in India are finding ways to increase girls’ mobility and opportunities. Some of them offer computer or English classes because they know this kind of program is accepted by parents; then, the organization discreetly offers sexuality and human rights education to participating girls.

In Archana’s experience, organizations can often withstand community objections to sexuality education by explaining the importance of their work to angry parents and community members, waiting until the tension breaks, and returning to their work in a few months. She noted that organizations who broach topics like sexuality and gender equality with women and girls should expect backlash from conservative communities and prepare accordingly.

“There is always a backlash when you’re working with adolescent girls,” Archana said. “Everyone wants to control them.”

Read more about the connection between early marriage and control of sexuality here.

Complete Article HERE!

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Staying Out Of The Closet In Old Age

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By Anna Gorman

Partners Edwin Fisher, 86, and Patrick Mizelle, 64, moved to Rose Villa in Portland, Oregon, from from Georgia about three years ago. Fisher and Mizelle worried residents of senior living communities in Georgia wouldn’t accept their gay lifestyle.

Partners Edwin Fisher, 86, and Patrick Mizelle, 64, moved to Rose Villa in Portland, Oregon, from from Georgia about three years ago. Fisher and Mizelle worried residents of senior living communities in Georgia wouldn’t accept their gay lifestyle.

Patrick Mizelle and Edwin Fisher, who have been together for 37 years, were planning to grow old in their home state of Georgia.

But visits to senior living communities left them worried that after decades of living openly, marching in pride parades and raising money for gay causes, they wouldn’t feel as free in their later years. Fisher said the places all seemed very “churchy,” and the couple worried about evangelical people leaving Bibles on their doorstep or not accepting their lifestyle.

“I thought, ‘Have I come this far only to have to go back in the closet and pretend we are brothers?” said Mizelle. “We have always been out and we didn’t want to be stuck in a place where we couldn’t be.”

So three years ago, they moved across the country to Rose Villa, a hillside senior living complex just outside of Portland that actively reaches out to gay, lesbian and transgender seniors.

As openly gay and lesbian people age, they will increasingly rely on caregivers and move into assisted living communities and nursing homes. And while many rely on friends and partners, more are likely to be single and without adult children, according to researchpublished by the National Institutes of Health.

Rose Villa Senior Living, located just outside of Portland, Oregon, has made a point of welcoming LGBT elders. The community, which offers independent and assisted living, also has a nursing home on site.

Rose Villa Senior Living, located just outside of Portland, Oregon, has made a point of welcoming LGBT elders. The community, which offers independent and assisted living, also has a nursing home on site.

But long-term care facilities frequently lack trained staff and policies to discourage discrimination, advocates and doctors said. That can lead to painful decisions for seniors about whether to hide their sexual orientation or face possible harassment by fellow elderly residents or caregivers with traditional views on sexuality and marriage.

“It is a very serious challenge for many LGBT older people,” said Michael Adams, chief executive officer of SAGE, or Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders. “[They] really fought to create a world where people could be out and proud. … Now our LGBT pioneers are sharing residences with those who harbor the most bias against them.”

There are an estimated 1.5 million gay, lesbian and bisexual people over 65 living in the U.S. currently, and that number is expected to double by 2030, according to the organization, which runs a national resource center on LGBT aging.

Andrea Drury, 69, and Kate Birdsall, 73, got married in 2014 and moved to Rose Villa last year. Birdsall said she wanted to grow old together in an accepting environment. “We are just one of the couples who are here,” she said. “It just so happens we are both women.”

Andrea Drury, 69, and Kate Birdsall, 73, got married in 2014 and moved to Rose Villa last year. Birdsall said she wanted to grow old together in an accepting environment. “We are just one of the couples who are here,” she said. “It just so happens we are both women.”

Nationwide, advocacy groups are pushing to improve conditions and expand options for gay and lesbian seniors. Facilities for LGBT seniors have opened in Chicago, Philadelphia, San Francisco and elsewhere.

SAGE staff are also training providers at nursing homes and elsewhere to provide a more supportive environment for elderly gays and lesbians. That may mean asking different questions at intake, such as whether they have a partner rather than if they are married (even though they can get married, not all older couples have).  Or it could be a matter of educating other residents and offering activities specific to the LGBT community like gay-friendly movies or lectures.

Mizelle, 64, and Fisher, 86, said they found the support they hoped for at Rose Villa, where they live in a ground-floor cottage near the community garden and spend their time socializing with other residents, both gay and straight. They both exercise in the on-site gym and pool. Fisher bakes for a farmer’s market and Mizelle is participating in art classes. Fisher, who recently had a few small strokes, said they liked Rose Villa for another reason too: It provides in-home caregivers and has a nursing facility on site.

But many aging gays and lesbians — the generation that protested for gay rights at Stonewall, in state capitols and on the steps of the Supreme Court — may not be living in such welcoming environments. Only 20 percent of LGBT seniors in long-term care facilities said they were comfortable being open about their sexual orientation, according to a recent report by Justice in Aging, a national nonprofit legal advocacy organization.

Ed Dehag, 70, at the Triangle Square Apartments in Los Angeles, California, in August 2016. The retired floral designer moved into the building when his partner passed away and he couldn’t afford the rent on his old apartment by himself.

Ed Dehag, 70, at the Triangle Square Apartments in Los Angeles, California, in August 2016. The retired floral designer moved into the building when his partner passed away and he couldn’t afford the rent on his old apartment by himself.

This summer, Lambda Legal, a gay advocacy group, filed a lawsuit against the Glen Saint Andrew Living Community, a senior residential facility in Niles, Illinois, for failing to protect a disabled lesbian woman from harassment, discrimination and violence. The resident, 68-year-old Marsha Wetzel, moved into the complex in 2014 after her partner of 30 years had died of cancer. Soon after, residents called her names and even physically assaulted her, according to the lawsuit.

“I don’t feel safe in my own home,” Wetzel said in a phone interview. “I am scared constantly. … What I am doing is about getting justice. I don’t want other LGBT seniors to go through what I’ve gone through.”

Karen Loewy, Wetzel’s attorney at Lambda Legal, said senior living facilities are “totally ill-prepared” for this population of openly gay elders. She said she hopes the case will not only stop the discrimination against Wetzel but will start a national conversation.

“LGBT seniors have the right to age with dignity and free from discrimination, and we want senior living facilities to know … that they have an obligation to protect it,” Loewy said.

A photo of Dehag’s partner sits on the dresser in his bedroom. Dehag moved into one of the apartments shortly after his partner passed away.

A photo of Dehag’s partner sits on the dresser in his bedroom. Dehag moved into one of the apartments shortly after his partner passed away.

Spencer Maus, spokesman for Glen Saint Andrew, declined to comment specifically on the lawsuit but said in an email that the community “does not tolerate discrimination of any kind or under any circumstances.”

Many elderly gay and lesbian people have difficulty finding housing at all, according to a 2010 report by several advocacy organizations in partnership with the federal American Society on Aging. Another report in 2014 by the Equal Rights Center, a national nonprofit civil rights organization, revealed that the application process was more difficult and housing more expensive for gay and lesbian seniors.

Recognizing the need for more affordable housing, the Los Angeles Gay & Lesbian Elder Housing organization opened Triangle Square Apartments in 2007. In the building, the first of its kind, residents can get health and social services through the Los Angeles LGBT Center. The wait for apartments with the biggest subsidies is about five years.

Residents display rainbow flags outside their doors throughout the building. On a recent morning, fliers about falls, mental health, movie nights and meningitis vaccines were posted on a bulletin board near the elevator.

Lee Marquardt, 74, at the Triangle Square Apartments in Los Angeles, California, in August 2016. Marquardt moved into the apartment building two years ago. She said she didn’t want to spend her elder years hiding her true self as she had as a younger woman.

Lee Marquardt, 74, at the Triangle Square Apartments in Los Angeles, California, in August 2016. Marquardt moved into the apartment building two years ago. She said she didn’t want to spend her elder years hiding her true self as she had as a younger woman.

Ed Dehay, 80, moved into one of the apartments when they first opened. His partner had recently passed away and he couldn’t afford the rent on his old apartment by himself. “This was a godsend for me,” said Dehay, a retired floral designer who has covered every wall of his apartment with framed art.

His neighbor, 74-year-old Lee Marquardt, said she came out after raising three children, and didn’t want to spend her elder years hiding her true self as she had as a younger woman. Marquardt, a former truck driver who has high blood pressure and kidney disease, said she found a new family as soon as she moved into the apartment building two years ago.

“I was dishonest all the time before,” she said. “Now I am who I am and I don’t have to be quiet about it.”

Tanya Witt, resident services coordinator for the Los Angeles LGBT Center, said some of the Triangle Square residents are reluctant to have in-home caregivers — even in their current housing — because they worry they won’t be gay-friendly. Others say they won’t ever go into a nursing home, even if they have serious health needs.

Marquardt holds an old photograph of herself of when she was married. Marquardt, a former truck driver who has high blood pressure and kidney disease, came out after raising three children.

Marquardt holds an old photograph of herself of when she was married. Marquardt, a former truck driver who has high blood pressure and kidney disease, came out after raising three children.

In addition to facing common health problems as they age, gay and lesbian seniors also may be dealing with additional stressors, isolation or depression, said Alexia Torke, an associate professor of medicine at Indiana University.

“LGBT older adults have specific needs in their health care,” she said. And caregivers “need to be aware.”

Lesbian, gay and bisexual elders are at higher risk of mental health problems and disabilities and have higher rates of smoking and excessive alcohol consumption. They are also more likely to delay health care, according to a report by The Williams Institute at UCLA School of Law. In addition, older gay men are disproportionately affected by some chronic diseases, including hypertension, according to research out of UCLA.

Torke said LGBT seniors are not strangers to nursing homes. The difference now is that there is a growing recognition of the need to make the homes safe and welcoming for them, she said.

The Los Angeles Gay and Lesbian Elder Housing organization opened Triangle Square Apartments in 2007. In the first of its kind building, residents can get health and social services through the Los Angeles LGBT Center.

The Los Angeles Gay and Lesbian Elder Housing organization opened Triangle Square Apartments in 2007. In the first of its kind building, residents can get health and social services through the Los Angeles LGBT Center.

At Rose Villa, CEO Vassar Byrd said she began working nearly a decade ago to make the community more open to gays after a lesbian couple told her that another facility had suggested they would be more welcome if they posed as sisters. Today, several gay, lesbian and transgender people — individually and in couples — are living there, Byrd said. Her staff has undergone training to help them better care for that population, and Byrd said she has spoken to other senior care providers around the nation about the issue.

Bill Cunitz and Lee Nolet, who began dating in 1976, didn’t come out as a couple until they moved to Rose Villa last year. Cunitz is an ordained minister and former head of a senior living community in Southern California. He said he didn’t want to be known as the “gay CEO.”

Nolet, a retired nurse and county health official, said it’s been “absolutely amazing” to find a place where they can be open— and where they know they will have accepting people who can take care of them if they get sick.

“After 40 years of being in the shadows … we introduce each other as partner,” Nolet said. “Everyone here knows we’re together.”

 Complete Article HERE!

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