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

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!

Mouthwash Helps Kill Gonorrhea Germs in Mouth, Throat: Study

Listerine’s maker has long made the claim, and new Australian research seems to confirm it

by Robert Preidt

A commercial brand of mouthwash can help control gonorrhea bacteria in the mouth, and daily use may offer a cheap and easy way to reduce the spread of the sexually transmitted disease, a small study from Australia contends.

Gonorrhea rates among men are on the rise in many countries due to declining condom use, and most cases occur in gay/bisexual men, researchers said.

The maker of Listerine mouthwash has claimed as far back as 1879 that it could be used against gonorrhea, though no published research has ever proved it.

In laboratory tests, the authors of this new study found that Listerine Cool Mint and Total Care (which are both 21.6 percent alcohol) significantly reduced levels of gonorrhea bacteria. A salt water (saline) solution did not.

The researchers then conducted a clinical trial with 58 gay/bisexual men who previously tested positive for gonorrhea in their mouths/throats. The men were randomly assigned to rinse and gargle for one minute with either Listerine or a salt solution.

After doing so, the amount of viable gonorrhea in the throat was 52 percent in the Listerine group and 84 percent among those who used the salt solution. Five minutes later, men in the Listerine group were 80 percent less likely to test positive for gonorrhea in the throat than those in the salt solution group.

The study was published online Dec. 20 in the journal Sexually Transmitted Diseases.

The monitoring period after gargling was short, so it’s possible the effects of Listerine might be short-term, but the lab findings suggest otherwise, according to the researchers.

A larger study is underway to confirm these preliminary findings.

“If daily use of mouthwash was shown to reduce the duration of untreated infection and/or reduce the probability of acquisition of [gonorrhea], then this readily available, condom-less, and low-cost intervention may have very significant public health implications in the control of gonorrhea in [men who have sex with men],” Eric Chow and colleagues at the Melbourne Sexual Health Center wrote in the study. Chow is a research fellow at the center.

Gonorrhea, which is common in young adults, is spread by vaginal, oral or anal sex with an infected partner. It often has mild symptoms or none at all. If left untreated, it can cause problems with the prostate and testicles in men. In women, it can lead to pelvic inflammatory disease, which causes infertility and problems with pregnancy, according to the U.S. National Institutes of Health.

Complete Article HERE!

Where Latino teens learn about sex does matter

By Nancy Berglas

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The U.S. teen pregnancy rate is at a historic low, with the number of teen births declining dramatically over the past decades.

But there are disparities among groups of teens. Latina teens have the highest teen birth rate of any racial or ethnic group. Latino teens are also more affected by STIs – particularly chlamydia, syphilis, and gonorrhea – than their white peers. Sexually active Latino teens are also less likely to use condoms and other forms of contraception.

Sexual exploration during adolescence is normal and healthy. These disparities are a sign that many Latino teens have unmet needs when it comes to information about sexual health and relationships.

Prior research has found that teens’ source of sex information is related to their beliefs about sex and sexual behaviors. And today teens get information about sex from a variety of sources, including their parents, peers, school and digital media.

Understanding where teens learn about sex and how that influences them can help us find ways to encourage healthy sexual behaviors, such as using condoms and birth control.

But despite these disparities, and the fact that Latinos are also the largest ethnic or racial minority in the U.S. (constituting 17 percent of the population and 23 percent of all youth), there is very little research about where Latino teens are getting information about sex.

To find out more about which sources are most relevant to Latino teens, we surveyed nearly 1,200 Latino ninth graders at 10 different high schools in Los Angeles.

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In the survey, teens had to select their “most important source of information about sex and relationships while growing up” from a list of 11 options. Rather than asking about the many sources of information they have encountered, we wanted to know which one they felt was most important in their lives.

Parents were the most commonly listed source, with 38 percent saying their parents were their most important source of information about sex and relationships. These findings are similar to surveys of teens from other racial and ethnic groups, who report that parents are the most important influence on their decisions about sex.

For some teens in our study, different sources – including other family members (17 percent), classes at school (13 percent) and friends (11 percent) – fill this important role.

Although other studies have found that teens often rely on media and the internet for sexual health information, teens in our study rarely mentioned them as their most important source. That doesn’t mean they aren’t accessing information about sex online or hearing about sex on TV, but that they do not necessarily see these as the most important source in their lives.

We also wanted to know if there was a connection between Latino teens’ most important source of sex information and their intentions to use condoms in the future.

Overall, most teens in our study planned to use condoms the next time they had sex, with 71 percent of teens saying that they “definitely will” and 22 percent saying that they “probably will.” But did their preferred source of information about sex matter in this decision?

We compared the influence of parents, other family members, friends, boyfriends or girlfriends, schools, health care providers and media on teens’ intentions to use condoms.

After controlling for other factors known to be linked to teens’ sexual behaviors, such as age, gender and sexual experience, we found that these Latino teens’ stated most important source of sex information was significantly related to their intentions to use condoms in the future. In other words, there is a connection between where teens get information about sex and their future sexual behaviors.

We then compared the influence of other sources of sex information to the influence of parents.

Teens who reported that their family members, classes at school, health care providers, boyfriends or girlfriends, or the media were their main source of information about sex reported similarly high intentions to use condoms to teens who listed their parents as most important.

However, the teens who turned to their friends for sex information were less likely to say they planned to use condoms than teens who turn to their parents. This is not too surprising. Teens who rely on friends as their primary source of sex information may be more vulnerable to peer pressure to avoid using condoms or may be getting misinformation about their effectiveness.

The primary source of sex information was particularly important for the boys’ intentions to use condoms in the future. The boys who rely on friends or media and internet as their main sources for sex information were significantly less likely to report planning to use condoms than the boys who turned to their parents.

Boys who do not have a trusted adult who they can rely on for sex information may be seeking out sources that could also spread negative messages about condoms, such as “locker room talk” with peers or pornography online.

These findings highlight the importance of providing comprehensive sources of sex information for Latino teens at home, in their schools and in the community.

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Unfortunately, we don’t know how these results compare to other groups of teens. Not enough research has been done on how the various sources of sex information may influence teens’ sexual behavior, and there is a need for more studies on this topic.

Given that parents are a popular and important source of information for many teens, interventions that empower parents to talk to their kids about sexuality, relationships and sexual health and provide them with accurate information could help.

It may be beneficial to include other family members such as grandparents, aunts, uncles, cousins and siblings in these interventions so they too can provide accurate information when teens turn to them.

Encouraging positive family conversations about sex and relationships will help young people make healthier decisions and grow into sexually healthy adults.

Complete Article HERE!

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

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!

What I Need My Daughter To Know About Consent, Even Though It’s Difficult To Talk About

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The job of raising children entails a comprehensive, albeit exhausting, list of responsibilities. The duty is a privilege but the pressure to “get it right” weighs heavily on me, particularly when it comes to sex. Considering my own salty experiences, consent isn’t just an important topic, it’s the most important topic — with both my daughter and my son. While I try to remain an open book, there are things I haven’t been teaching when I talk about consent, especially with my daughter and mostly because I’ve been afraid of getting “too deep” into the subject of sex. However, and arguably now more than ever, I need to “dig deep” and have these important conversations.

The first time I had sex I was a junior in high school, and while there was consent I had a few traumatizing experiences years prior that, to this day, I’m not completely “over.” With divorced parents in and out of relationships and my life completely devoid of comprehensive sex education or much, you know, “notice,” it took the whole “live and learn” motto to to an extreme and simply tried to understand sex, sexuality and consent as best I could.

My daughter must, and I mean must, realize how difficult it is, so it doesn’t come as a surprise to her when and/or if she is faced with a decision and the need to protect her voice and her body.

I’d never been taught much about consent or that it’s my right to decide what happens (or doesn’t happen) to my body. I grew up within the bounds of massive chaos that didn’t allow me to decide, even if I had known. Sexualized at a tender age due to a body that matured early, I’d become used to catcalls and looks from strange men. Eventually, I was assaulted by people I trusted; once on a basement floor and a second time in a parking garage. Both events changed me in ways I could never see coming, especially as a parent and partner.

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I didn’t tell anyone about either of the incidents. I felt ashamed and thought no one would believe me. If they had, I surmised I’d hear things like, “You asked for it,” or, “I thought you liked him,” all of which would’ve only added to the discomfort I already felt in my skin. Rape culture is a powerful thread, woven deep into the fibers of society. As women, it erases our beliefs that we are worthy, we can say no, and, more importantly, we can change our mind if we’d said yes.

For this reason, and many others, I started talking to my children early on about consent and why it’s so important. By telling them they don’t have to hug someone goodbye if they don’t want to, and setting personal boundaries within our bodies and others, I laid a foundation (I hope) that will aid them both and especially my daughter if they’re faced with similar circumstances later on. I want my daughter to know, her body, her rules and that her voice matters.

One thing I didn’t know then, was that my silence was not consent.

When I think back to those times I went through after the assaults, I’m saddened. Not only did they morph the way I felt about sex from then on, they changed my views on relationships in general. I don’t mean for it to affect my every move, but it does. Having your body taken advantage of changes a person. I certainly don’t want my daughter (or son) to ever feel this way so I’ll do whatever I can to protect them or, at the very least, empower them through both my experiences and words.

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That means not only teaching my them both about consent, but explaining to my daughter how difficult it can be to withhold consent when you feel uncomfortable. The pressure to make people especially men happy when you’re a woman is unfathomable to those who do not experience it. So many women (and men) stay silent, for fear they will be judged or ridiculed or put in a physically unsafe situation. My daughter must, and I mean must, realize how difficult it is, so it doesn’t come as a surprise to her when and/or if she is faced with a decision and the need to protect her voice and her body.

With the way society sexualizes women, it’s easy to feel powerless in any sexual situation.

One thing I didn’t know then, was that my silence was not consent. I thought by not agreeing or disagreeing, everything was OK, no matter how much I screamed inside of my head. This is so wrong. I’ve taught my daughter this and hope she utilizes the knowledge she’s in control of her body.

With the way society sexualizes women, it’s easy to feel powerless in any sexual situation. Now that these talks are more prevalent (thanks to an uprising in news stories), the one thing we’re not teaching out daughters when we talk about consent is that very right to change her mind whenever she so chooses, no matter how difficult or embarrassing it may be. If I teach her nothing else, I hope this embeds in her subconscious. It could mean the all difference in the world.

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Parenting has challenged me every single day since my early days of pregnancy and I’m beyond grateful for those difficulties. In the end, they’ve helped me evolve in ways I otherwise wouldn’t have, and have opened my eyes to all the things I didn’t know when I was a child that I now fight to know for my own children.

When I look into my daughter’s eyes, I’m fully aware of the gravity consent brings. I want her to know all her options before she’s in a situation she can’t get out of. I want her to know how difficult and uncomfortable it can be to exercise any of those options, because peer pressure is powerful and social expectations are palpable. She can say yes, she can say no, and she can damn well change her mind whenever she damn well pleases.

Her body, her terms. The end.

Complete Article HERE!