Category Archives: Disability

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!

Disability and desire

Martha explores how to feel loved when you find it impossible to love yourself

'You can't conduct healthy relationships when you don't truly believe that anyone could ever be in love with you'

‘You can’t conduct healthy relationships when you don’t truly believe that anyone could ever be in love with you’

by Martha Saunders

“So, we’re autistic” said the man on the screen, flatly. I played the clip over and over again, searching for the joke. “So, we’re autistic.” “So, we’re autistic.” The meme was a clip from the show The Undateables, and it had surfaced on my news feed because someone I’d recently hooked up with had liked it. I typed out various increasingly explicit formulations on the response “Undateable? that’s not what you said the other night” before deleting them and throwing my phone across the room, furiously wiping tears from my eyes and a warm wave of familiar self-disgust churning through my stomach.

Confession: the main reason I don’t tell anyone about being autistic is that it isn’t very sexy. Disability in all its forms is utterly desexualised in our society – autism particularly so, in part due to it’s inaccurate representation as something which primarily affects young children. Autistic characters don’t have sexual relationships unless their clumsy attempts at doing so are a source of comedy for neurotypical viewers. We are “undateable.”

Young autistic women exist in a strange and dangerous contradiction. Young women are taught their primary value is their sexual attractiveness; disabled people are constantly publicly desexualised. As a result, I spent much of my teenage life obsessively chasing something which would always be, by definition, just a little out of my reach.

No matter how hard I worked to look pretty enough, sound smart enough, deliver flirty and funny enough comebacks, something about me still felt inherently undesirable. I cut my hair a different way every few months and saved my school lunch money for fake nails, a rainbow of lipsticks and boxes of hair dye in bright red, peroxide blonde, jet black, pastel pink and chocolate brown, hoping that one day I’d hit on some magic combination of chemicals that erased what felt like a ugly, rotten core.

Like many young women who’ve always felt something was a little out of place, I was drawn to fourth-wave feminism’s mantra of self-love and body positivity like a moth to a bulb. But while I saw women around me flourish in these spaces, they weren’t what I was looking for. In fact, as a slim, white, blue-eyed blonde, I am slightly incongruous in them; women who look like me are already constantly validated as being physically attractive. My sense of inadequacy hadn’t been coming from my body; conversely, I realised, I had been using making my physical self look as good as possible in order to to compensate for the insecurity I felt about my disability. When your insides feel uglier than your outside, the concept of inner beauty just makes you feel worse.

If it were that easy

If it were that easy

It’s not hard to predict how this deep-rooted sense of undesirability can manifest in unhealthy relationships. While the logical, stridently feminist, #StrongIndependentWoman side of me knows to take no shit from creepy men who feel entitled to my body, there is a part of me, larger and more influential than I’d like to admit, which feels someone like me should be pathetically grateful for sexual or romantic attention. Even when it comes to full relationships, it’s still very difficult for me to separate genuine attraction to a man from intense gratitude at his interest in me. Whether it’s likes on a selfie or a series of incredibly inadvisable involvements with boys I should theoretically despise, I am constantly looking for ways to compile quantifiable proof that I am desirable.

Women with invisible disabilities struggle with sex and relationships in many different ways; some of us become terrified of engaging in sex or dating at all; some of us attempt to fill our deep sense of inadequacy with as many flings and one night stands as possible. Some of us become prime targets for abusive relationships due to our predisposition to self-doubt and our fear that nobody else will accept us; some of us hold partners at arms length or self-sabotage as quickly as possible, fearing that if anyone gets close enough to find out what we’re really like they will be repulsed and hurt us more.

It sounds like a cheesy platitude, but you can’t conduct healthy relationships when you don’t truly believe that anyone could ever be in love with you, and you can’t believe that anyone could be in love with you until you’ve learned to love yourself. It’s hard to do this when you’ve only ever seen people like you degraded and mocked for their efforts to feel wanted. A lot of the people cracking jokes about your disorder will have no idea how many brilliant, captivating, engaging disabled people they’ve been attracted to. If that makes you “undateable” to them? Their loss.

Complete Article HERE!

How a sex worker helps my wife and I maintain good sexual health

David Heckendorf and his wife Jenni on their wedding day.

David Heckendorf and his wife Jenni on their wedding day.

So, here we go. We are coming out to the nation. Jenni and I have sex with other people. There, it’s done.

But, lets wind back three decades and place this in context.

It is my first job after leaving school. I’m at the Sydney-based Spastic Centre’s sheltered workshop. It seemed very large to a pimply faced 17-year-old fresh from one of the centre’s two special schools. I found the morning tea and lunch breaks in the cafeteria particular daunting when I was one of about 300 wheelchair users trying to be served and assisted to eat before the bell rings to return to the factory floor.

I had seen Jenni at our hostel over the years and she carried an air of importance, with her father being on the board. I soon found her favourite table in the cafeteria. I would try to race to it each day hoping to sit next to her and, perhaps, share a support worker. The time spent together soon extended beyond the lunch table to include activities other than talking.

The mid-’80s in saw a change in the national disability policies from large residential facilities to much smaller group homes spread throughout communities. I was among the first to be de-institutionalised. While Jenni and I weren’t housed together she frequently visited.

After a long courtship, mostly by correspondence, we married on 1 December 1990 in the small university chapel at Armidale NSW, where I was fortunate enough to be accepted to study. Our Byron Bay honeymoon was so delightful that we returned the following year.

We moved to Canberra in search of employment after my degree and to work towards a second qualification. Together, Jenni and I had to survive a number of ‘homes’ that were less than ideal. One was at an Australian National University residence where the bedroom was so small we had to leave our wheelchairs in the public access hallway. In a later house, the bedrooms were not even big enough to accommodate our bed, so we used the living room as a bedroom.

Notwithstanding these challenges, we were doing remarkably well with support from ACT government-funded home care services. That was until September 1, 2008 when Jenni over-balanced transferring from the bed to her wheelchair. She landed awkwardly and broke bones in her left foot, which weren’t properly diagnosed or treated for several months.

This fall had long-lasting consequences on Jenni’s health generally and on our sex lives. Her prolonged and mostly unsuccessful recovery resulted in Jen having further reduced mobility in and out of bed. It meant we had to take extreme care not to touch or bump her foot. We had been fully independent in bed but after the fall the effort involved became too much. We tried different toys and different positions without joy.

Two years after the fall we were at a point where we had to make a decision to either give up on enjoying sex or to investigate the possibility of allowing a third person into our bed.

We were way too young to stop having sex.

Sex is important in most long-term relationships because it increases the pair-bonding by releasing the ‘love hormone’ oxytocin. There is also scientific evidence to suggest that sex has a range of health benefits associated with our immunity, heart, blood pressure, reduced risk of prostate cancer, pain and stress relief.

In early 2011 we arranged for sex worker, Joanne, to begin working with us. With each visit we had to remind ourselves that she wasn’t there to make ‘love’ to us. Rather, in the same way that our support staff ensure that we remain in good physical health – by showering, feeding, and dressing us – Joanne helps us to maintain good sexual health.

Also in 2011 we successfully approached the ACT government to extend the funding of our disability care support to cover these conjugal support services. In December 2015, the National Disability Insurance Scheme (NDIS) agreed that, in our situation, a modest allowance for conjugal support service would be reasonable and necessary.

Jenni and I still enjoy doing a lot of activities together. For instance, we work out at the Spastic Centre’s (now the ‘Cerebral Palsy Alliance’) Canberra gym, challenge each other at online Yahtzee, visit our favourite local cafe for morning coffees, and cuddle up in front of our favourite television shows and movies.

Doubtlessly, sex is critical to all marriages. Our love for one another and shared history means sex is important for our marriage too. And, just as with other activities, we just need the right support to make this part of our life happen.

Complete Article HERE!

The film making us face the idea disabled people have sex

‘Yes We Fuck’ is an uncompromising look at the reality that disabled people have sex lives too. We caught up with director and disability activist Antonio Centeno to find out more

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Yes We Fuck

As a society we’re becoming more accepting of sexuality in all its guises and forms – and rightly so. 2015 could be seen as the year when trans issues finally broke through into the mainstream after decades spent on the margins of society, while more and more women in particular are joining the sexually fluid revolution. And yet for all of our talk, there’s one conversation that we’re not having – about how disabled people have sex.

Spanish director and disability activist Antonio Centeno wants to tackle this prudishness head-on. His film Yes We Fuck (which is co-directed with Raúl de la Morena) is a no-holds barred look at the world of disabled sexuality, with uncompromising visuals (of people having sex) and a strong sense of moral purpose. Centeno shows human intimacy in all its forms, and what strikes you from watching the film is that the issues faced by disabled people when it comes to their sex lives aren’t so dissimilar to those faced by the rest of the population.

Watching the film, which recently showed at the British Film Institute’s Flare festival, at times makes for uncomfortable viewing. You’re discomfited by the fact that the sexuality depicted on our TVs and in popular culture almost uniformly represents one experience: that of heterosexual intimacy between two able-bodied, cis-gendered people.

Yes We Fuck is an uplifting, refreshing corrective to the narrative that disabled people are in some way sexless, made noble by the struggles they undergo to assimilate into a society that is in many ways ableist. The film isn’t perfect – sections are too long, and while Centeno wants to depict the reality of disabled people having sex, at times the camera lingers too long or in a way that feels intrusive. It’s clear that this is very much a passion project from the fledging director, and one which could perhaps have profited from tauter editing. Nonetheless, it’s rare to see a film which so profoundly makes you confront your own prejudices to recognize that we all of us share a common humanity and a common desire to express that humanity through the most natural act of all – the act of fucking, of course.

To find why we need to get on board with the fact that disabled people fuck like the rest of us, Dazed caught up with Centeno at the BFI. Below is the transcript of our conversation, which has been edited for flow and clarity.

 

Can you give us a bit of background as to why you made Yes We Fuck? Is this an issue that’s particularly close to home for you?

Antonio Centeno: By background I’m an activist and I’ve always advocated for helping disabled people, or those with functional diversity as we prefer to call them, to lead independent lives wherever possible. For us, this is a political issue. If we want people with functional diversity to have real lives – not merely to survive – then we need to be visible sexual beings. We need to break this infantilised image of us as children, to show that people with functional diversity are sexual beings, people who desire and are desired. So by giving them a sexuality, we politicise the issue.

You depict real-life intimacy in the film in a lot of detail. How did you get the participants to trust you?

Antonio Centeno: Many of the people in the film I’d met as activists throughout the years, so they trusted in me and what I was doing. And they understood that the film wasn’t just entertainment, but a political tool to help the change the realities of our society. I mean, of course it was difficult, to expose yourself and put your body out there. But it was only possible because of the trust I enjoyed from them, and the fact they understood what political message we were trying to put out.

What’s the reaction been like?

Antonio Centeno: In my native Spain and internationally there’s been a huge amount of interest and it’s generally been very well received. Some people find it too direct, maybe  there’s too much exposure, and some people thought there were some stories missing as well. But it’s been more difficult getting it out to a wider audience, outside of LGBT and specialist film festivals. And I think this reflects the way in which people with functional diversity live in our society. You know, we live away from the masses, from the general public. We live in ghettos. And by ghettos, I mean special residences, or with families that look after us. We go to special schools, because we have to. We work in special centres. So basically, we live in a parallel world, segregated from other people.

Would you like to see this segregation broken down so everyone is living side-by-side?

Antonio Centeno: Well, I’m not sure about ‘everyone’. I don’t like most people! [Laughs].

The title of the film is quite risque…

Antonio Centeno: In Spain, we have a motto which roughly translates as ‘Fuck as you live, and live as you fuck’. Which means that you can only have your own independent life if you have a sex life which is free, which is independent, which is rich. And you can only have a sex life that is free if you personally are free. If you have a free sex life, you can have a good life. You can fight for your freedom, for your independence. So the film is about how you can show, through sexuality, that people with functional diversity want to live like others, independently, not being cancelled out and made to delegate their decisions through family members or professionals.

What I found interesting about the film is that a lot of the sexual issues that people faced, like guilt or shame, are common to everyone, not just those with functional diversity.

Antonio Centeno: Well, our intention wasn’t just just to show weird people doing weird things. We wanted to deal with general issues, like desire, pleasure, our relationship with our bodies. But basically by focussing on this group of people with functional diversity, we produced this magnifying glass effect…I mean, the issues that they have aren’t so dissimilar from those the rest of the population have. But it’s just magnified in this group.

It’s historically very difficult to depict sex on film. Was this a concern for you? Wanting to show sexuality in a way that was honest without being gratuitous?

Antonio Centeno: Well, I want to start by saying that reality doesn’t exist, as such. We were constructing a reality. And that’s the powerful thing about porn, not that it represents reality but that it constructs reality. If we think about what people think about those with functional diversity, they think that we don’t have sex. So we wanted to put images in the heads of the viewers, so that those images were incompatible with the prejudices that they had.

Is there a danger that we risk sensationalising the issue?

Antonio Centeno: It’s a risk we take, definitely. But if the problem before was people with functional diversity being invisible, and now it’s us being sensationalised, that’s okay with me. For me, it’s important that we construct narratives which don’t just place people with functional diversity between two opposite poles. You know, we have the pariahs, the hopeless people, and then on the other end of the spectrum there’s the hero and it’s all very inspiring, but…I mean, no one actually believes that. It’s reductive. So there are lots of stories that have to be constructed in the middle about people with functional diversity. And that’s what I hope to do.

Complete Article HERE!

Off Limits? The Best Sexual Positions for People with Limited Mobility

Aging brings changes to our physical and emotional states. These changes can have both positive and negative affects when it comes to sexual intimacy. While it’s not a given that desire and frequency of sex decrease as we get older, it may be necessary to accommodate the limited mobility many of us experience over time. Painful joints, decreased flexibility, and physical disabilities can all contribute to restricted mobility. Rather than allow limited mobility to get in the way, we’ve provided illustrated positions to help you and your partner continue to be intimate. Remember that not all positions work for every individual or couple. Do what feels best for you and your partner and pay attention to any discomfort. Read on for our suggestions that appropriate for various conditions.

The Best Sexual Positions for People with Limited Mobility

Complete Article HERE!