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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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Inside the fascinating world of a feeder fetish

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By Mamamia Team

“I wanna enjoy every single pound,” says Tammy Jung, “and every inch of me that grows.”

Tammy Jung is a ‘feedee’ or a ‘gainer’. That is to say, she engages in Feeder Fetishism.

Feederism is a sub-category of fat fetishism, where individuals harbour a strong or even exclusive sexual attraction to people who are overweight or obese. Feederism involves sexual gratification in regards to gaining or helping others gain weight.

Tammy Jung

“I like to feed. I like to make sure other people are full and happy and satisfied. I like to be full and happy and satisfied,” says Jung.

Jung and her boyfriend Johan Uberman make adult films, in which Uberman feeds Jung large amounts of food, sometimes, while engaging in sexual acts. They have so far made over 300 videos.

Tammy drinks a triple serving of chocolate milk protein shake through a funnel.

A feeder/feedee relationship is often kept private, but Jung and Uberman broadcast the fetish on the internet for the enjoyment of others. So what doses Uberman think of the idea of other people enjoying Jung being fed as much as he does?

“It’s great,” he says. “It makes me feel like I have…more of a trophy than I already had.”

Uberman says his goal, when it comes to feeding Jung, is “metamorphosis.”

The couple feel the relationship and association between food and sex is entirely natural. Uberman refers to ancient Roman orgies, where groups of people would binge before sex.

Jung’s original goal was to reach 300lbs (136kgs). She has achieved that, setting her next goal to gain 50lb (22kgs) in six-months. Uberman sees things a  little more big-picture. “Honestly,” he says,”there is no limit”. But he says he will be happy as long as his partner is comfortable.

The “metamorphosis” of Tammy Jung.

Tammy has told the Daily Mail that her decisions about her body are her own and they are no one else’s business: “I’ve never been happier than I am working to put on weight – nothing will stop me achieving my dream. I’m making lots of money doing what I love – and I want to make even more.”

She says that for the first time, she feels great about herself: “After I gave up sports, I began putting on weight. At first I was in denial. But one day I looked in the mirror and realised I was fat – and I felt great about it. My body looks so sexy and I feel more womanly the heavier I get.”

It costs the couple up to $150 AUD per day to keep up Tammy’s unique diet: “I start the day with a huge breakfast of waffles, cream cheese, bacon and sausage then head to McDonalds for a few burgers in the afternoon. I can snack on cheese all day, a couple of blocks is no problem, then for dinner I’ll either eat pizzas or make Mexican food. At the end of the day I make a weight gain shake from heavy whipped cream and a whole tub of ice cream, which Yohan feeds me through a funnel.”

Tammy explains, “the funnel forces me to drink the shake even when I’m full after a day of eating.”

The fetish is discussed frequently on Reddit, where concerns about a lack of education and understanding in regards to health have been raised. However, the general consensus within the community appears to be in favour of two consenting adults making their own choices.

“Of the feeder/feedee relationship blogs I keep up with, too often does there seem to be this lingering sense of ignorance (e.i. I think many of the feedees, and even the feeders, don’t have a complete understanding of the health risks associated with obesity and weight gain.)” said one Reddit user. “That being said, If two completely consenting adults are fully aware of the health concerns but still think it’s worth it, then more power to them. I like to equate it to a smoking fetish. There are plenty of people who willingly accept the risks because it’s simply worth it to them.”

Complete Article HERE!

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4 Steps To Having Open And Honest Talks About Sex With Your Kids

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If you don’t, let me tell you who will…

By Lori Beth Bisbey

Many parents find it difficult to talk about sex and intimacy with their children. No one ever taught them how, and it’s understandably uncomfortable. But like anything else, as a parent you need to figure out how and when to discuss sex and intimacy with your child before society does.

Today’s children are at greater risk of developing a warped view of sex and intimacy than ever before. They desperately need you to explain to them your view of what healthy sex and intimacy look like.

When I use the phrase ”warped view” I’m not referring to kinky sex practices or alternative sexuality. I’m far more concerned about the average views regarding sex and sexuality and how they are communicated.

Research shows that young people receive most of their modeling around sexual behavior from the media —  in particular, pornography.

Don’t misunderstand me. This is not an anti-pornography stance. My concerns here revolve around the fact young people are getting the majority of their information from such an impersonal source.

While attending the recent TED Women Conference, what I heard from speaker Peggy Orenstein chilled me to the bone.

 


 
Orenstein conducted research focused on girls and sex. She performed an in-depth interview with a group of 70 racially and ethnically diverse girls between the ages of 15 and 20 who identified as either college bound or already in college. Among the group, 10 percent placed themselves on the sexuality spectrum as being either lesbian or bisexual.

Research shows a high prevalence of sexual assault occurs on college campuses. Even in our modern culture we still have difficulty navigating discussions of consent without the inevitable spiral into talk of “false allegations.”

As the mother of a 14 ½-year-old son who has been raised in a complicated family, I strive to give him the tools necessary for negotiating the minefield of sexual and intimate relationships.  

  • He has a variety of people he can talk to about these decisions who I know will always have his back.
  • He knows that he needs to discover his own desires, likes, and dislikes.
  • He knows that his body belongs to him.
  • He knows about consent.
  • He knows to treat his partners with respect and not to be judgmental.
  • He also knows that talking about these things, though potentially embarrassing, is essential to having healthy and satisfying long-term sexual relationships.

As an intimacy coach and a psychologist, I remain concerned for those kids raised in homes in which their parents never even mention sex, the children whose parents are never physically affectionate in front of them, and those in homes in which too much adult sexual behavior is seen.

Paul Bryant, a professor of telecommunications at Indiana University Bloomington, highlights the trouble faced by children learning about sex through pornography in his “sexual script theory” regarding the sexual socialization of teens.

For today’s teen, pornography lays down internal scripts for a variety of sexual behaviors and scenarios.

If parents do not present an alternative view, the only model for how to behave in sexual relationships will come from media — not just pornography, but from music and music videos as well. Without the safeguard of knowing they have a non-judgmental parent to discuss with what they see and learn, they have no meaningful way to understand and consider the positives and negatives among the variety of sexual scripts they see in order to weigh their feeling about the perceived possibilities.

There is no easy fix to this discussion.

As adults, we need to examine the way we relate to sex and how we talk about it with each other. As we become more comfortable talking about sex with our own partners and peers, we will become more confident about discussing it as a parent as well.

To get you on your way, here are 4 steps you can take to begin addressing the problem and have conversations with your child about sex — starting right now.

1. Take a look at your own experiences of sex and sexuality.  

If you have experienced sexual trauma, this is the time to resolve any issues that remain charged or live for you. You may need help to do this or you may already get help through your social support network.

If you haven’t experienced sexual trauma, this is the time to look at any issues, stuck places, and/or negative thought patterns you have in relation to sex and sexual relationships. You can work through this on your own, with your partner, or with your social support network as well.

2. Learn about what is normal for your children at each stage of development.  

Try to do this without judgment. Have a look at what your children are being exposed to in your wider culture. Each of us has our own moral code, and moral codes are constructed whereas sexual development is built as part of a biological process.

You may believe that masturbation is a sin, but this is a moral belief. Biologically, ALL children discover that when they touch their genitals, it feels good. This is the way human beings are constructed. Healthy and comprehensive personal development depends on the combination of biological, psychological, spiritual, and moral development, as well as development that is culture specific.

3. Create a safe space to have intimate conversations with your children.

This may seem like a given, but many homes offer no safe space for a child to bring up issues around sex and sexuality. In many families, these topics are dealt with by simply handing children reading materials. There are some excellent books out there to help children with all manner of topics relating to sex and sexuality, but books are not a substitute for a home environment that fosters safe conversation.

Your children need a place where they can get questions answered. Start creating that safe space to talk about emotions first (if you haven’t already). Once your children are used to talking about more difficult topics and you are used to dealing with these without judgment, with acceptance, and in a way that fosters growth, then you can begin to have the talks about sex.

4. Find out what is age appropriate for your child and pitch your conversation to that level.  

Talking to a five-year-old who asks where babies come from is very different from answering a question about how you get pregnant from a 10-year-old. Keep the conversations short and sweet. Do use videos, audio recordings, and books as aids, and encourage your children to come back to you with questions.

Set up a consistent routine so your child knows there will always be a time and a place to bring up these topics. If you’re not comfortable having these sorts of conversations with your child OR your child is too embarrassed to talk to you, make sure you have an alternate trusted adult (or a few) the child knows they can feel free to approach. Children thrive when they have more than one viewpoint to consider about this amazing, yet complicated part of life.

Remember that this is a process that will continue to take shape throughout your child’s development.

If you do so, then your young adult will also come to you with questions and your adult child will be much more likely to create satisfying intimate relationships for himself or herself.

Children who have self-knowledge and an understanding of the joy and dangers of sex are at lower the risk of becoming victims of sexual assaults.

The more knowledge you possess, the more quickly you are apt to take a firm stance, and therefore the more likely you are to be seen by a perpetrator as a difficult target. Perpetrators go for the softest targets they can find, so the harder a target you make yourself, the more you lower your risks.

So go have that talk!

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.”

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Vaginismus: solutions to a painful sexual taboo

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Many women use terms such as ‘failure’ or ‘freak’ to describe themselves

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Vaginismus is often a problem from the start of a woman’s sexual life but for some it is a secondary problem, developing even though there may have been previous positive sexual experiences

Vaginismus is often a problem from the start of a woman’s sexual life but for some it is a secondary problem, developing even though there may have been previous positive sexual experiences

Vaginismus is a very common but rarely discussed problem. Most women I see with this difficulty will not have discussed it with anyone else, not even female members of their own family or girlfriends. The silence that surrounds the issue and the sense of shame experienced sometimes serves to compound the difficulty itself. Many women with whom I have worked will use terms such as “failure” or “freak” to describe themselves, wishing they were “normal” just like every other woman.

Before seeking therapy, they will often have suffered this distress over a long period of time, not feeling able to embark on or enjoy sexual relationships. The thought that they may not be able to conceive through intercourse is frequently a huge anxiety for these women.

What is vaginismus?
Vaginismus occurs when the muscles around the entrance to the vagina involuntarily contract. It is an automatic, reflexive action; the woman is not intending or trying to tighten these muscles, in fact it is the very opposite of what she is hoping for. Often it is a problem right from the start of a woman’s sexual life but for some it is a secondary problem, developing even though there may have been previous positive sexual experiences. In most cases, the woman is unable to use tampons or have a smear test.

What are the symptoms?
The main symptom of vaginismus is difficulty achieving penetration during intercourse and the woman will experience varying degrees of pain or discomfort with attempts. Partners often describe it like “hitting a wall”. This is as a result of spasm within the very strong pelvic floor or pubococcygeus muscle group. Spasm or tightening may also occur in the lower back and thighs.

What are the causes?
Vaginismus is the result of the body and mind developing a conditioned response to the anticipation of pain. This is an unconscious action, akin to the reflexive action of blinking when something is about to hit our eye. This aspect of vaginismus is one of the most distressing for women as they really want their bodies to respond to arousal and yet find it impossible to manage penetrative sex. The more anxious they become, the less aroused they will feel and the entire problem becomes a vicious cycle.

Vaginismus can occur as a result of psychological or physical issues. Often it is a combination of both. Psychological issues centre around fear and anxiety; worries about sex, performance, negativity about sex from overly rigid family or school messages.

Inadequate sex education is often a feature in vaginismus, resulting in fears about the penis being able to fit or the risk of being hurt or torn. There can also be anxiety about the relationship, trust and commitment fears or a difficulty with being vulnerable or losing control.

Occasionally a woman may have experienced sexual assault, rape or sexual abuse and the trauma associated with these experiences may lead to huge fears around penetration. There are physical causes too – the discomfort caused by thrush, fissures, urinary tract infections, lichens sclerosis or eczema and the aftermath of a difficult vaginal delivery can all trigger the spasm in the PC muscles. Menopausal women can sometimes experience vaginismus as a result of hormonal-related vaginal dryness.

Treatment
Vaginismus is highly treatable. Because every woman is different, the duration of therapy will vary but, with commitment to the therapy process, improvement can be seen quite rapidly. Therapy is a combination of psychosexual education, slow and measured practice with finger insertion and/or vaginal trainers at home and pelvic floor exercises. Women with partners are encouraged to bring them along to sessions so that the therapist can work with them as a couple towards a successful attempt at intercourse.

Vaginismus can place huge stresses on a couple’s relationship as well as their sexual life; therapy can help the couple talk about and navigate these stresses. This is particularly important for a couple wishing to start a family.

What do I do if I think I have vaginismus?
Make an appointment with the GP. It will be helpful to have an examination to out rule any physical problem and have it treated if necessary. The GP is likely to refer you to a sex therapist, a psychotherapist who has specialised in sex and relationships through further training. They have specific expertise in working with this problem on a regular basis. You can also refer yourself to a sex therapist but, because of the very complex and sensitive nature of sex and sexuality, it is important to ensure that they are qualified and accredited. Sex therapists in Ireland may be found on www.cosrt.org.uk

GEMMA’S STORY
Robert was my first boyfriend. We waited six months to try sex, mostly because I was a virgin and very nervous. My mother had always warned me about not getting pregnant and I think I was too scared to try. When we did try, it didn’t work, it was disastrous. We tried again and again but he could not get in.

Every time we tried, I ended up in tears and over time I started to avoid sex. Robert was really patient but I know that it was very tough for him and I felt guilty. We thought it was a phase and it would improve with time. It didn’t stop us getting engaged because we knew we were right for each other.

Eventually I got the courage up to go to the doctor who diagnosed vaginismus – the relief of having a name to put on it was huge. She referred me to a sex therapist. I was embarrassed even talking about it, but quite honestly it was a relief to finally discuss it all. She explained everything about my problem and started me practising with vaginal trainers. I even got to start using tampons, something I never thought I would be able to do.

Robert also came to the sessions and that was a big help. We were given exercises to do at home together that helped me relax a lot. I made a lot of progress over a couple of months and, finally, last Christmas we got to try intercourse again. Success! Our sexual relationship is completely different now, no more worries and lots more fun.

I feel as if a huge worry has been lifted off my shoulders.

Complete Article HERE!

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