Why Are STI Cases Soaring?

— We Asked the Experts

Newly-released data shows infections for certain sexually transmitted infections have jumped tremendously.

By Korin Miller

  • Several sexually transmitted infections have increased in the U.S., according to new data from the CDC.
  • The 7% increase continues an upward trajectory in certain STIs.
  • Doctors say there are a lot of reasons why this is happening in the U.S.

Sexually transmitted infections continue to climb in the U.S., with syphilis cases in particular skyrocketing in 2021—the most recent year data is available.

The data was shared as part of a report from the Centers for Disease Control and Prevention (CDC) released this week. The report breaks down cases of a range of STIs, including chlamydia, gonorrhea, and syphilis.

The data show that there were 1,644,416 new chlamydia cases diagnosed in 2021—a 4% increase over 2020. There were also 710,151 new cases of gonorrhea diagnosed, an illness that’s been steadily increasing 28% since at least 2017, when 555,608 cases were diagnosed.

But while syphilis cases made up a fraction of overall STI cases, they’re on a sharp upward trajectory: 176,713 new cases were diagnosed in 2021, a significant increase from the 133,954 cases diagnosed in 2020 and 129,818 cases diagnosed in 2019.

Cases of congenital syphilis (which is what happens when the disease is passed from a mom to her baby during pregnancy) also jumped up—from 2,157 in 2020 to 2,855 in 2021.

The CDC notes that case numbers were undercounted in 2020 due to the pandemic and “likely continued in 2021,” but that the impact was the most severe in 2020. “The annual report shows infections continued to forge ahead, compromising the nation’s health,” Leandro Mena, M.D., M.P.H., director of the CDC’s Division of STD Prevention, said in a statement.

Those are a lot of numbers to wade through, but the overall takeaway is this: STIs, which have already been recorded at high numbers across the country, continue to jump up. Here’s what’s going on.

Why are STIs increasing across the country?

The report didn’t specify why these STIs in particular are jumping up—it simply crunched the numbers. However, the CDC noted that certain racial, ethnic, and sexual minority groups are disproportionately impacted by STIs.

Black or African-American people made up a third of chlamydia, gonorrhea, and syphilis cases, but only make up 12% of the U.S. population, the report points out. Nearly 1/3 of all gonorrhea cases were in gay and bisexual men. Congenital syphilis rates increased for most racial and ethnic groups, but the highest rate was in babies born to American Indian and Alaska Native people, the report noted.

“While tried-and-true prevention strategies are key, social inequities often leads to health inequities and, ultimately, manifest as health disparities,” the report says. “We must work collaboratively to address social, cultural, and economic conditions to make it easier for people to stay healthy.”

But…what’s behind all this? “A lot,” says Thomas Russo, M.D., an infectious disease expert at the University of Buffalo Jacobs School of Medicine and Biomedical Sciences. “Here’s the thing: 2021 was our breakout year where the COVID-19 vaccine became available and people started playing a lot of social catch-up,” he says. “As a result, there was a whole bunch of interactions, some of which involved sexual activity.”

STI rates “reflect how well our public health infrastructure is,” Dr. Russo says, noting that there was a big shift in resources during the height of the pandemic. “It was all about COVID,” he says. “STI public health clinics and even interactions with physicians probably took a backseat.”

Infectious disease expert Amesh A. Adalja, M.D., a senior scholar at the Johns Hopkins Center for Health Security, agrees. “COVID disrupted STI work dramatically,” he says. “Health departments do the bulk of STI work and they were under-resourced to do STIs and COVID.”

The opioid crisis may also play a role, Dr. Russo says. “There’s a lot of activity that occurs to get drugs for sex,” he says. “That usually involves multiple partners and unprotected sexual activity.”

There was also a lack of widespread testing for STIs during the height of the pandemic in 2020, and that may have led to less people getting screened and diagnosed—increasing the odds they spread STIs to others, says women’s health expert Jennifer Wider, M.D. “A drop in screening and testing for all sorts of diseases and conditions [in 2020] has resulted in a jump in diagnoses for many people, particularly in groups with poor access to healthcare to begin with,” Dr. Wider says.

here is also inconsistent and “inadequate sex education” in the U.S., which lowers the odds that someone will know prevention strategies for STIs and recognize symptoms, if they happen to develop them, Dr. Wider says.

Why are syphilis cases jumping up so quickly?

Syphilis cases hit “historic lows” in the early 2000s, the report says, but they’ve since surged, increasing a jaw-dropping 781% since 2001. Some states—California, Texas, Arizona, Florida, and Louisiana—have been disproportionately impacted, making up 58% of reported cases of congenital syphilis. The larger syphilis epidemic was also mostly concentrated to within 100 counties—they made up 60% of all reported cases in 2021.

A lot of the reasons why chlamydia and gonorrhea are spreading in the U.S. applies to syphilis as well, Dr. Russo says. But he also points out that syphilis “spreads reasonably well” through oral sex. “People often think that oral sex is relatively safe when it comes to STIs but, with syphilis, that’s not the case,” he says. “That’s one of the factors that can drive it.”

The CDC stressed in the report that syphilis is “completely preventable and treatable,” adding that “timely screening, diagnosis, and treatment can save lives, but if left untreated, the infection can cause serious health problems and increase the risk of getting an HIV infection.”

How to lower your risk of getting an STI

You’ve likely heard all of this before, but it never hurts to do a refresher. The CDC offers the following advice to lower your risk of getting an STI:

  • Practice abstinence. The CDC points out that the most reliable way to avoid STIs is to avoid having anal, vaginal, or oral sex.
  • Get vaccinated against HPV and hepatitis B. The vaccines won’t protect against everything, but the HPV vaccine in particular can help lower the risk of contracting certain strains of HPV that are linked to the development of cancer.
  • Reduce your number of sex partners. Less sex partners means a lowered risk, the CDC says. However, the agency still recommends that both you and your partner get tested and share your results with each other.
  • Be mutually monogamous. That means both you and your partner only have sex with each other.
  • Use condoms. The CDC recommends that you use a male latex condom every time you have anal, vaginal, or oral sex. Non-latex condoms can be use, the agency says, but they have higher breakage rates than latex condoms.

The CDC also stresses the importance of using STI testing and treatment, noting that there some pharmacy and retail health clinics allow people to get tested on-site.

Unfortunately, Dr. Russo expects things to get worse before they get better, given the state of reproductive care in the U.S. and lack of access to sexual health clinics for people in some states. “We need to do better and make a commitment to this important area,” he says.

Complete Article HERE!

How Does Disability Affect Sex?

— People living with disabilities are often assumed to be asexual, which can have disastrous effects on their well-being. Humans are inherently sexual and, as such, deserve to have safe and pleasurable sexual experiences and be free to explore their sexuality and gender.

By

  • Many people within society view people living with disabilities as asexual, leaving them with little access to sexual and reproductive healthcare and education.
  • People living with disabilities are sexual beings and are entitled to safe and pleasurable sexual experiences and to explore their sexual and gender identities.
  • Mobility, fatigue, and pain can affect the sex of someone living with a disability. However, there are multiple toys and positions that can be used to help alleviate some of these issues.

Although limited mobility, pain, and fatigue may affect a person’s sex life, certain toys and positions can aid in pleasure.

How does disability affect sex?

Having a disability can affect sex in several ways, particularly for people with limited mobility, chronic pain, and fatigue. However, this doesn’t mean that those living with a disability cannot enjoy a healthy and pleasurable sex life, as having a physical or cognitive disability doesn’t limit a person’s sexuality.

Humans are inherently sexual and have sexual thoughts, feelings, desires, and fantasies. However, many people within society view people living with disabilities as ‘asexual,’ not wanting to have sex, or not experiencing sexual feelings. This stereotype can affect people living with disabilities in numerous ways, including diminishing self-confidence, desire, ability to find a partner, and ability to view themselves as sexual being. People living with disabilities exist along the same spectrum as nondisabled people, with varied sexual orientations and gender identities.

Those living with mobility issues and chronic pain may have to approach sex a little differently than they’d like to. However, there a sex toys designed specifically to help with this issue for those who’d like to engage in solo sex. For those wanting to engage in sex with a partner, several positions and tools can help alleviate pain and maximize pleasure.

How to maximize pleasure while living with a disability?

Give yourself permission to be sexual

Sadly, research has found that people living with disabilities often internalize the asexuality stereotype, which diminishes their sexual desire and arousal. However, all humans are sexual beings that deserve sexual pleasure. Permitting yourself to be sexual, both solo and with a partner, allows you to reclaim your sexuality and cultivate a pleasurable life.

Allowing yourself to be a sexual being has added benefits, particularly concerning sexual health, as those who are sexually autonomous have been found to make informed decisions about their sexual health, leading to healthier outcomes.

Use toys, tools, and positions that work for you

There are a number of tools, positions, and toys that assist people with limited mobility and chronic pain.

The Bump’n sex toy can be used in several different ways depending on your needs. It’s designed to be a huggable pillow that you can insert a number of sex toys into to hump or grind on, which is great for solo play.

Sex wedges and pillows can also assist with placing your body in a position that is comfortable for you. Depending on your mobility and your partner’s mobility, there are many different positions that you can use to increase pleasure. When exploring new positions with a partner, both partners need to be communicative and express what feels good and what doesn’t. And remember that lube goes a long way in making things feel good.

How does disability affect sexual health?

As many people living with a disability are labeled ‘asexual’ by society, they often do not receive adequate sexual health care from health providers. Those living with a disability need regular pap tests, breast exams, prostate exams, and testicular checks, just like the rest of society.

People living with a disability who engage in sex need to have regular STI checks and have access to education on the importance of contraception.

People living with disabilities should expect to be treated as the whole person by healthcare professionals and expect to receive necessary sexual health care. If your health care needs are not taken seriously, we encourage you to advocate for yourself or access services available in your area to get the care you deserve.

People living with disabilities are not given comprehensive sexual health education

Again, as many people in society see people with disabilities as asexual, sexual education is often overlooked. However, sex and relationship education is just as important for people with disabilities as for those without disabilities. Sex education for disabled people should be given as children, with age-appropriate information. Additional information should also be covered, including:

  • People living with disabilities can have romantic, meaningful, and pleasurable relationships.
  • Sexual information that is specific to their individual needs.

Receiving this education allows people to live sexually healthy and pleasurable lives in healthy relationships.

Humans are inherently sexual beings deserving of safe and pleasurable sexual experiences, relationships, and sexual healthcare access, including those with disabilities. If you are living with a disability, you are entitled to be treated and respected as a sexual being. Although limited mobility, pain, and fatigue, may not allow you to have the sex you would like, there are toys, tools, and positions that can aid in pleasurable sexual experiences for solo and partnered play.

Complete Article HERE!

SexTech and Disability

— Why These Markets Matter

By Wednesday Lee Friday

Everyone enjoys sex—or could, if they had access to the right products and solutions. Most SexTech is designed with able-bodied consumers in mind, which begs the question: What about the disabled market?

We spoke to leaders at three prominent adult product companies to examine the state of SexTech in terms of accessibility and meeting the needs of those with disabilities. Andrew Gurza, Chief Disability Officer at Handi; Dr. Soum Rakshit, Co-Founder and CEO of Mystery Vibe, and AJ Vitaro, President of Zen by Design.

Responses may be slightly edited for clarity or brevity.

SexTech Magazine: In terms of numbers, how big is the market for able-inclusive products? Is there enough potential revenue on the table to attract industry attention? In other words, does servicing this community make financial sense, as opposed to simply being ‘the right thing to do?

Dr Soum Rakshit: My research shows that 15% of people have some sort of physical disability (not including blindness), though many aren’t disabilities we can see. Setting aside numbers though, good designs should work well for everyone. When we designed Crescendo, versatility was our core concept. This involved adding a lock, making buttons flush, and adding a remote or app control for those who might not be able to reach buttons during use.

AJ Vitaro: Paralysis, for example, due to a wide variety of conditions and injuries, effects nearly two percent of the population in The United States alone. However, being in the furniture design business for over twenty years and connecting with thousands of people, it leads us to believe that these numbers are even higher than anticipated. As far as revenue potential for our company in particular, it is not a target market for us, per say; however, we do attract those with disabilities due to the supportive, ergonomic nature of The Tantra Chair ®.

STM: On a scale of 1-10, how has the SexTech industry performed in terms of able-inclusivity? 

Andrew Gurza: I would rate the SexTech industry a 3/10 in terms of their inclusivity of the disabled population. That isn’t to say that companies haven’t attempted to address the inclusivity gap, however, we rarely see disabled people in the marketing or creation of the products themselves, and if they are considered, it seems to be an afterthought or a PR stunt versus being integrated into the strategy from the outset.

We are one of the only companies with a Chief Disability Officer and disabled Co-Founder who advises on the lived experience and has been integral to the branding and product design. We hope to be setting a positive example of inclusive design and integration.

STM: Can you take us through the launch of one of your inclusive products?

AJV: When we develop a product, the creative process is arduous, time consuming and extremely detailed. Sometimes it can take us over three years to perfect a design concept, and this was true for The Tantra Chair ®. We work with the dimensions of the human body across a very wide spectrum to come up with designs that nurture the majority of people whether they are struggling with an injury, disability or in perfect health. In our initial years, we were very surprised by the amount of people with injuries or disabilities that were pleased beyond measure because they were able to be comfortable again during intimacy. We continue to hear this often and it is something that we are truly grateful for.

Dr. S.R.: We made the product with inclusivity in mind, but did not include people with disabilities in our user group. This wasn’t planned, and we have since added more diversity to test groups. Our purpose is to design products for everyone, not because you want to tick a box. When people put time into a design, it works for everyone.

STM: Products that are marketed to surmount a specific obstacle can often go mainstream unexpectedly. The Clapper, a device that turns off electric appliances by clapping hands, was invented with customers with mobility issues in mind. Similarly, weighted blankets were products used to calm children with autism and hyperactivity disorder. Now these blankets are immensely popular for an array of consumers.  

Still, we wonder if there’s concern in the industry that disability-friendly products will be less desirable to abled people. How might that be mitigated?

AG: Many of the people that we spoke with at Handi as we created our tech were both disabled and non-disabled alike, and they all told us that they wanted a toy that could work for everyone. When you design with disability in mind, you can create a product that is accessible to everyone. At Handi, we also understand that disability will affect everyone at some point in their lives, so we should be creating products with that in mind. It’s like a type of orgasm insurance – even if you don’t need it today, you may very well tomorrow. Not to mention, there’s something very compelling about a hands-free sex toy – which 76% of our able-bodied respondents were interested in.

Dr. S.R. Yes, that’s a perception that can be mitigated with design. Imagine retrofitting something for disability access—a staircase, for example. It’s not going to look as good as a staircase that was designed for access from the beginning. Design is everything. The better the tech is, the less you’ll see it. Adult products push tech forward just as pornography did for internet speed, enhanced picture resolution, accessibility—even the battle between VHS tapes and Betamax was settled by adult content.

AJV: We don’t believe that disability-friendly products will be less desirable to abled people. With our product specifically, it can enhance the life of a person with a disability, an aging couple, or even healthy, adventurous couples.

STM: What should product designers and developers be aware of in order to create more inclusive products? 

Dr. S.R.: Things outside our day-to-day life are often invisible to us. So it’s important to keep updating. Pilot groups are vital to us, and we use 1,000 pilot users for each new product. Even if you can’t have a diverse focus group—piloting works.

AG: A big roadblock in the SexTech category is the lack of marginalized people involved in the creation of the final product from ideation to concept to production.  SexTech needs to actively include these voices all the way through the process if they want to truly be seen as inclusive. Otherwise it can come off as lip service. Talking the talk, but not walking the walk. One of the biggest needs that isn’t being addressed by the current SexTech, is the prevalence of people with limited dexterity or hand disabilities/limitations. The buttons on so many current products are small and not easy to use. Hundreds of millions of people live with this as a result of disabilities, and 63% of the people we surveyed said that they struggled with self-pleasure due to issues with hand mobility. We need more toys that are easier to use; have bigger buttons and are as hands-free as possible.

The only way to effectively address this is to hire more disabled people to work on the product and concept design. Listen to what they have to say; what are their frustrations with products? What are their frustrations with sexuality as disabled people? By truly listening to these stories, you can uncover a need, and from that, you can create a truly groundbreaking product that will not only change their sex life, but will change their life entirely.

AJV: This is a difficult question to answer, but many disabilities stem from nerve damage due to physical injury, stroke, etc. In most of these circumstances, the spinal column is damaged. We hyper focus on spinal support for everyone, may they have an injury, or not and this inadvertently attracts customers that want to maintain a healthy spinal column to those that are injured and limited in mobility. It makes perfect sense to create designs that will enhance the well-being of everyone.

STM: How should inclusion and representation be marketed? Do you lean toward separate marketing for each demographic, or one clear message for everyone?   

Dr. S.R.: We tend to use education rather than marketing, just letting people know what’s available to them. We’re proponents of reverse marketing; simply telling people about a product and inviting them to check it out often yields better results than click funnels and the like.   

STM: What do you see as the main challenges to marketing inclusive products?

AJV: We do not market our products (specifically The Tantra Chair ®) as a medical device for a variety of legal reasons. However, people with disabilities are inadvertently drawn to it, because they recognize that it can help them solve a physical problem or at the very least, create a much more comfortable experience for them.

Dr. S.R.: We have never marketed on the basis of inclusiveness. We think that might be divisive. If we make it a marketing point, people may think it’s not genuine. Inclusiveness should be done by default. The only time we talk about the inclusiveness of our products specifically is in award applications.

What we’re seeing is an industry moving forward to inclusivity as a matter of course. The way forward is to create and market SexTech products that can work for any user, and be effectively marketed across multiple demographics. Extending inclusivity into focus groups and test markets will go a long way toward making the very concept of ability-accessible products a thing of the past. That’s bound to improve sex lives—and every other aspect of life.

Complete Article HERE!

‘It’s a human right’:

The campaign for learning disabled people’s love lives

Pam Bebbington and her husband, Mike. ‘Relationships are important because they give you a life companion,’ she says.

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Care staff are being encouraged to support people to develop intimate relationships and enrich their emotional lives

Pam Bebbington met her husband, Mike, through a personal ad in her local paper. She’s been married for 21 years, and appreciates having a soulmate. “Relationships are important because they give you a life companion,” she says. “You can share things and cuddle up.”

But Bebbington, a consultant at self-advocacy charity My Life My Choice (MLMC), says many of her learning disabled peers struggle with relationships. “Finding the right person is hard. Parents and carers can get in the way and curfews [such as in supported housing], money and travelling all make it difficult.” She says care staff must “allow people to have a relationship and encourage them to do so”.

This is the aim behind the nationwide Supported Loving campaign MLMC is involved in, which offers practical advice on enabling people’s intimate and emotional lives. Research has shown that young people with a learning disability lack accessible sex education resources and only 3% of people with a learning disability live as a couple, compared with 70% of the general population.

Supported Loving originally began two years ago as a social media campaign. Since then it has grown according to demand, offering good practice resources developed by support organisations and people with learning disabilities, some of whom feature in videos used in training.

Claire Bates, Supported Loving founder, says the campaign’s ultimate aim is mandatory training in sex and relationships.

She believes supporting someone’s emotional and intimate needs should be par for the course in social care. “This shouldn’t be [in] the ‘too difficult’ pile,” she says. “People with learning disabilities are often so far away from having a sexual partner, they need support to meet someone first. We need to help people have meaningful friendships and from that will come a sexual relationship, if they want one.”

Supported Loving’s latest development is an online toolkit contributed to by a range of organisations, including family planning associations, care providers, specialist dating agencies, and staff working in relationship and sex education. There is practical advice on topics including contraception, sexual health, masturbation, online dating, LGBT relationships and sex workers.

There are also plans to publish a charter promoting the relationship rights of learning disabled people, which MLMC, Supported Loving and social inclusion charity National Development Team for Inclusion are developing.

One of the toolkit’s guides outlines how relationship support should be a vital part of a care professional’s role. The tips and examples, contributed by training organisation Paradigm, suggest staff receive face-to-face guidance on how to have conversations about and support people in exploring sexuality, love and relationships. There must be clear policies around relationships rather than incorporating this issue into safeguarding training. Staff must also not assume people lack the capacity to form loving bonds or have sexual relationships.

Such online guidance is available alongside quarterly meetings that take place across the country. These aim to discuss issues and share best practice on everything from sexual abuse to online dating, with participants including people with learning disabilities or autism, family members and professionals working in social care and health.

Supported Loving is also complemented by research at the Tizard Centre University of Kent (Bates is the project’s honorary research associate). Michelle McCarthy, the professor leading the work, says of social attitudes: “Historically we didn’t expect people with learning disabilities to have rich, emotional lives – as if they were somehow ‘other’, and if they were physically cared for that was enough. That attitude hasn’t entirely gone.”

McCarthy’s project, which included four advisers with learning disabilities, explored the views of 40 learning disabled adults and 40 family carers and support staff. The research has yet to be published but emerging findings illustrate the very specific barriers created by social care services. These include a lack of one-to-one support, restrictions about overnight visitors and safeguarding concerns.

McCarthy explains: “The way services are structured and run is that they themselves can be barriers to people. So if you’ve only got only a few staff you can’t offer people one-to-one support to go and meet someone to have a date.”

The comments from learning disabled people gathered by McCarthy and her researchers underline just how vital it is to achieve progress in this area. When asked about why relationships are important, one learning disabled participant replied: “Sometimes I get lonely and I think if I’ve got somebody who I could trust it would make me happier.”

As Bates says: “It is people’s human right to have a relationship. It shouldn’t be a ‘nice to have’, but something that adds value to people’s lives. We are social animals; if you don’t see someone in that way, then you don’t see them as human.”

Complete Article HERE!

Young People with Learning Disabilities Denied Sex Education Due to Societal Stigma

by Ellen Hoggard

Young people with learning disabilities are being denied sex-positive relationships and sex education due to societal stigma, with 36% of professionals saying that sex education is not prioritised in their school

This Sexual Health Week, young people’s sexual health and wellbeing charity, Brook, is working with the learning disability charity, Mencap, to shout louder about the needs of young people with disabilities and support professionals delivering relationships and sex education (RSE).

The charity surveyed the professionals delivering RSE to young people with disabilities. Of those surveyed, 80% said they struggled to find accessible resources that meet the needs of young people with learning disabilities. A further 80% said it is difficult to find images that reflect the sexual experiences of young people with learning disabilities.

 

Despite RSE becoming mandatory in 2020, inclusivity remains a taboo subject. 54% of those delivering RSE said they cannot access training to help with sex education, while 36% say that sex education is not a priority in their school.

Richard Lawrence, Project Support Assistant and Co-Chair of the Sexuality and Relationship Steering Group at Mencap, said: “Some people are quick to judge people with a learning disability, like me, when it comes to sex and relationships. People with a learning disability have a right to choose if they would like to be in a relationship, have sex or get married.

“People have judged me for wanting to be in a relationship and have told me that because I have a learning disability, I don’t understand what a healthy relationship, consent or safe sex is.”

Helen Marshall, Chief Executive at Brook, said: “The reality is that lots of sexual health messages received by young people who have a learning disability are negative and focus primarily on risks and inappropriate behaviours.

“These are important aspects, but there needs to be a balance. If RSE is accessible, positive and inclusive, it can empower young people to become more independent, explore and develop healthy relationships and help to protect against abuse.”

Brook is using Sexual Health Week 2019 as an opportunity to start important conversations about sex and disability, challenging misconceptions and providing support to professionals delivering RSE.

The charity have created a hub of free, downloadable resources on a range of topics including; masturbation, same-sex relationships and pornography. Each topic is supported with further resources for young people to take away and continue reinforcing their learning.

Sex, relationships and disability

People with learning disabilities face multiple barriers when developing intimate or sexual relationships – including a lack of adequate RSE. Without this education, young people are being denied the skills and knowledge they need to not only have healthy, fulfilling relationships, but to understand and explore their own sexuality.

Teachers and those delivering RSE also face barriers when supporting young people with disabilities. As revealed in a previous survey by the Sex Education Forum, only 29% said they had received training in sex education, and a staggering 99% wanted practical advice on meeting the needs of pupils with special educational needs and disability (SEND).

“Back when I was in school, I only got taught the basics, like here is a man and here is a woman. I didn’t learn anything about consent, safe sex or LGBT,” said Lawrence. “It’s a lot harder for people with a learning disability to find out about sex and relationships because accessible information is hidden away.

“That’s why Mencap is proud to be collaborating with Brook to make a positive difference to the next generation of people with a learning disability.”

If you have a learning disability, or know someone who does, Mencap offers information and support about sexuality and relationships. Enhance The UK is a charity run by disabled people, working to change the way people view disability and for disabled people to be active and equal members of society.

Alongside their #UndressingDisability campaign, they have produced a number of resources and Q&As to ensure disabled people have access to the same support as their peers.

Brook and Mencap want to use this Sexual Health Week and beyond to normalise the conversations around sex and disability, and support RSE professionals to better equip the young people they work with.

Sex and disability needs to be talked about more. For support, information and resources, visit Brook, Mencap and Enhance the UK.

Complete Article HERE!

Hospital’s new online workshop helps parents talk about sexual health with kids with disabilities

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Having “the talk” fills most families with dread. For parents of teens with disabilities, the conversation often takes on an added layer of complexity. Parents want to keep their especially vulnerable children close and safe, while instilling independence and strong self-esteem. They want their kids to assert their own boundaries, even as these children often require assistance with many aspects of their daily lives. Parents want their youth to go out into the world and have healthy relationships, but they worry because disabled people are at increased risk of abuse.

In a bid to help, Toronto’s Holland Bloorview Kids Rehabilitation Hospital launched a new online tool Monday designed for parents looking for insight into how to speak meaningfully with their disabled youth about sex. The new workshop, available free to the public off the hospital’s YouTube channel, covers everything from good relationships and consent to gender identity and social media – this for a cohort often left out of the sex ed discussion, thanks to lingering stigma around disabled people’s sexuality.

“We have needs and desires as well. We need to be educated on how to navigate these situations and have these conversations without it feeling like it’s such a taboo topic,” said Emily Chan, who co-designed the new workshop as chair of the hospital’s youth advisory council.

Chan, 22, has centronuclear myopathy, a rare neuromuscular condition. She said parents of those with disabilities often keep a “tight rein” on their children, but she urged them to speak with their kids about healthy relationships early, “not waiting until we’re heading into adulthood, or already in adulthood.”

The online workshop follows the release last week of new guidelines that recommended sexual health education be made available at short- and long-term care facilities serving youth with disabilities or chronic illnesses, with information geared toward their specific needs. Colleges and universities should offer comprehensive sex ed training to those studying to be caregivers and personal support workers for disabled people, according to The Canadian Guidelines for Sexual Health Education from the Sex Information & Education Council of Canada, a non-profit organization promoting sexual and reproductive health.

Joanne Downing sets the same priorities when she talks to her three children, ages 17 to 21, including her 19-year-old son Matthew, who has quadriplegic cerebral palsy and is non-verbal. Downing wants them all to be safe, respectful and make good choices.

“We talk about ‘my space, your space,’ and ‘good touch, bad touch,’” Downing, 57, said about Matthew. “He can understand whether or not he’s crossed that barrier or if someone’s crossed that barrier on him.”

Downing offered a family perspective for the new webinar and coached parents at two workshops held at the hospital over the winter. Talking to her own son, Downing uses proper terminology for body parts, and explains the difference between private and public space. One thing she recommends parents do with their disabled teens is differentiate between platonic friendships and romantic or sexual relationships.

“[Matthew’s] perception of having a girlfriend is someone of the opposite sex who’s a friend that he can hang out with,” Downing said. “He definitely likes girls and he flirts. He loves it. He knows pretty much every single swim instructor at the pool.”

Downing stressed the importance of striking a balance between autonomy and safety. Even though she’s involved in every facet of Matthew’s life and care, the mother has also taught her son how to ask for privacy.

Autonomy is critical to discussions of sex ed with this cohort, according to Yukari Seko, a research associate at Bloorview Research Institute, who along with social worker Gabriella Carafa developed the new online workshop. “Research shows that parents of children with a disability can be overprotective, and understandably so because they need more help,” Seko said. “But it can sometimes hinder their transition to adulthood. They need to learn and practice taking some risks.”

Opportunities to be independent – and to fail – are integral to figuring out what you want and don’t want in adult life, said Chan. “Youth need the chance to explore their environment and their relationships with others, to not be afraid to make mistakes and to learn from those mistakes,” she said. “You need to be able to get out into the real world and have those experiences to shape your personality, beliefs, values and how you approach different situations.”

At the same time, safety is a very real concern for these parents. Children and youth with a disability or chronic health condition are at an increased risk of sexual abuse, according to the Canadian Paediatric Society.

Miriam Kaufman, author of the Society’s report on this issue and the book Easy for You to Say: Q and As for Teens Living With Chronic Illness or Disability, said it is particularly important for parents of disabled youth to discuss consent, not only because these children can be more physically vulnerable but also because they’ve gotten conflicting messages about bodily autonomy all their lives.

“We have trained, from birth practically, young people with disabilities and chronic health conditions to put up with things that in any other context would be considered abuse: medical procedures, painful procedures … being held down for procedures and being told not to yell and to co-operate,” said Kaufman. “We train these kids from a young age that it’s okay for these strangers in the health care system to have access to their bodies. … They’ve learned that they don’t really have ownership of their bodies.”

It’s always a fine tightrope for parents of kids with disabilities, Kaufman said, who are trying to protect their children while helping them develop positive self-image. “Most parents also want their children to grow up sexually healthy, to be able to have relationships and be happy in those relationships,” Kaufman said. “They don’t want to totally freak them out about sexuality, in terms of protecting them.”

At Holland Bloorview, Seko urged families of disabled youth to educate themselves on these issues, but also to listen to their kids’ questions and observations.

“They are the experts of their life, too,” Seko said.

Complete Article HERE!

Sex & Accessibility 101:

How to Have Super Hot Sex with or as a Disabled Person

By

I was once a horny and confused disabled teenager, and somehow managed to come into my own as a horny and downright pervy disabled adult. Growing up, no one ever talked to me about sex or sexuality. Outside of my peer groups (and often times even within them), sex was a touchy issue. Doctors, educators, family — they all functioned from a place that sex wasn’t for someone like me. And woof, how do you feel good initiating conversations about your bod and all the things you find yourself wanting to do with it when even your doctor seems squeamish about it?

Fast forward to 2018, and doctors are still garbage. But I like to think that we queers of the world are ever-evolving, and as result, getting pretty hip to the concept that all different kinds of bodies want to connect with other bodies. With that in mind, I’m not going to waste any time defending the desirability of disabled folks. Disabled folks are desirable. Period. Disabled bods and access needs are still left out of the conversation when it comes to S-E-X and well… f*ck that. So settle in and hang out for a minute. We’ve got a lot to talk about.

Disability Sexuality

Disabled folks make up the largest minority population in the world; upwards of 20% of people in the US are living with a disability. This means whether you, yourself, are disabled or not, disability touches everyone in some way or another. Our genders and sexualities vary as much as anyone’s, but our access to communities that affirm (or allow us to explore) our genders and sexualities is frequently lacking. Navigating sex and disability as a queer person has its challenges, but outside of societal misconceptions and misinformation, it’s not necessarily any more (or less) complicated than navigating any other body or sexuality. Bodies are weird. Sex is weird. Weird is good.

While the information here can be useful for anyone, this guide primarily focuses on physical access needs in sex. Disability is an incredibly broad umbrella term. There are a lot of different ways that disability exists in the world, and needs and considerations vary greatly. This is in no way meant to be definitive or all-encompassing. All bods are different and need different things. That’s kind of the point. As always, take what applies and feels good for you.

Communication

Inarguably, communication is the key to good sex, period. But, for disabled folks (and the babes that love them), those conversations may feel a little more vulnerable than conversations some able-bodied folks are used to having, and it helps to learn better ways of navigating them.

It should go without saying, but assumptions never do anyone any good in the bedroom (or anywhere, really). It’s important to find ways to communicate your wants and needs without ambiguity. Knowing what you want can be half the battle whether you have accessibility needs or not, so don’t be afraid to do a little work in finding that out for yourself. Handy worksheets like this old gem from our own Austen, Ara, and Geneva can help you not only brainstorm your own wants and needs, but find common ground with your partner. Talking about you want to do with your partner, also opens up the line of communication to advocate for the things you may need in order to do it. If you’re feeling anxious, try to remember that these conversations feel vulnerable for all bods involved, so be kind to both yourself and your partner! Initiating potentially vulnerable conversations about sex and bodies can work best outside of the bedroom. Talking about sex can feel daunting enough; changing up the space and talking it out before you’re in the bedroom can help ease some of the pressure and help you connect.

If you’re able-bodied and your partner isn’t, remember that when your partner is opening up to you about their body, it’s a conversation, not an inquisition. Make sure you’re meeting them in the middle, not putting them through an interview. Talk about your own boundaries, needs, hopes and expectations. Rather than “How do you…?” or “Can you…?” lines of questioning, focus on pleasure (i.e. “What are you into?” “What feels good for you?”). Your interest is in finding out what makes them feel good, not unraveling the mystery of their body. Good conversation topics to consider: preferred words/terms for parts, parts of the body you do or don’t like to have touched/seen/etc., body sensitivity or pain.

A common don’t that comes up all too often is the dreaded “I don’t even notice,” “You’re pretty/handsome for a disabled person,” or “You’re not disabled to me!” Able-bodied folks tend to think these are compliments, but I can assure you as a person who’s heard it all, they aren’t. The last thing anyone getting down and dirty with you wants to hear is that you don’t see them, or that you have to avoid parts of them to feel attraction for them.

If you’re disabled and wanting to open up communication, remember that communicating with your partner is a back and forth. You’re not responsible for sitting under a spotlight and disclosing your medical history, and you should never feel pressured to say or do anything that doesn’t feel right for you. Everybody’s got needs and expectations in physical and intimate relationships! Try not to feel weighed down sharing yours.

Communication while getting down is important, too. Tell your partner when they’re making you feel good, and be open to vocalizing (and switching things up) when something’s not working for you. Likewise, be open to hearing from your partner when something isn’t working for them.

The effort it takes to hone your communication skills really pays off; it feels good to know what you partner needs and expects from you, and it feels really good to know that your partner cares about what you need. Besides, talking about sex is great foreplay, pal!

Getting Down

Setting the scene

One thing disabled folks with physical access needs are beyond familiar with is the need for preparedness. Sometimes we can get bogged down by all the little details needed to make a space accessible; sex is really no different in that regard. Setting the scene for the sex you want helps ease anxiety surrounding unwanted interruptions or time-outs. It helps keep things flowing, and builds up the anticipation — which can be exciting!

Making sure that your harnesses, toys, positioning furniture, lube, and clean up supplies are within reach is a great start, but there’s more you can do to set the mood. Don’t underestimate the power of intention!

For folks who experience incontinence, waterproof pads and blankets can help with anxiety surrounding unwanted (or wanted!) messes.  While any mattress pad could do the trick, items made for play such as the Liberator Fascinator Throw, or the Funsheet can make the playspace feel less sterile and more sexy. Think about what kind of material makes you feel best in these situations. Throws like the Fascinator absorb fluid without leaking through, whereas items like the Funsheet do not absorb fluids (which can potentially feel overwhelming for some folks). Regardless of your preference, when sexy time is over, just toss your sheets/throws into the washer and you’re good to go. Anxiety surrounding incontinence can feel like a lot, but try to remember that honestly all sex is messy and that’s often half the fun.

Lube & Barriers

Lube is f*cking important! This is true for everyone, but especially when stimulating a part of the body that has limited or no sensation. Apart from wanting to avoid general injury, many conditions can make it difficult for a body to produce its own lubricant. Find a lube that works well for you and your partner and use that lube generously.

I won’t go too ham in talking about barrier methods, but I will note that there are a lot of options to consider, from a proper fitted condom on penises and dildos/vibrators, to dental dams, and the very poorly named “FC2 female condom.” Be sure to be conscious of sensitivities to frequently used materials such as latex (and less commonly allergenic) nitrile/neoprene. It’s best to stay clear of barriers with added flavoring or spermicides. Always remember to check your lube is safe for use with the barrier method you’re using!

Positioning

There are an infinite number of ways to get two bodies to connect in just the right way. Shaking things up and exploring the way things feel best not only ensures you and your partner’s comfort, it’s also just hot and fun. There are gender- and sexuality-inclusive online quick guides like this one from The Mighty that may help get your creative juices flowing. There’s also positioning harnesses and slings like Sportsheets’ Super Sex Sling and Doggie Style Strap that can help take some of the pressure off of strenuous positioning. Sportsheets is a disability-inclusive brand also offering items like shower suction handles and foot rests, and other positioning tools that can aid in accessible play.

If your partner needs help transferring out of a chair or another assistive device, let them guide you in helping them properly. Don’t ever lift or move a partner without being asked to, and don’t ever move assistive devices to unreachable places unless your partner asks you to.

Harnesses

For some with limited mobility, spasticity or pain in the pelvic/hip region, standard harnesses may not be an option for strap-on sex. Fortunately, there are multiple harness options for those looking for accessible ways to engage in penetrative play, and getting creative in the harness department can be just as hot as it is practical! Sportsheets offers a thigh harness and the La Palma from SpareParts offers a gloved hand option. For folks with penises using strap-ons, SpareParts Deuce is a great option. Designed to be wearable regardless of ability to achieve erection, the harness has an upper ring for use with a dildo, and a lower ring for penis access.

Toys

This is the part where I might as well start by throwing my hands in the air praising the Hitachi Magic Wand. As a stubborn contrarian I’d love to find a reason to tell you why it doesn’t live up to its hype, but I’d be lying. Apart from being probably the greatest sex toy on earth, with its strong vibrations, large head, and versatile modification options, it’s also probably one of the most accessible. There are hitachi toy mounts like this one from Liberator, various head attachments, speed controllers (which do need to be plugged into the toy/wall, but also extend the range quite a bit), and good ol’ DIY mic stand setups. The rechargeable wand does away with the need to stay plugged in and is worth every penny for the upgrade.

For anal stimulation, b-vibe offers a wide selection of remote vibrating anal toys in a variety of sizes and shapes, eliminating the need to reach down to adjust or change settings on the toy during use. For comfortable wear in seated positions, try options with a thin base like the snug plug or the pleasure plug from Fuze.

For folks with penises who may be experiencing what sex expert Joan Price refers to as erectile dissatisfaction or unreliable erection due to paralysis, but want to engage in penetrative sex, ppa/extenders like Vixen’s Ride On paired with a comfortable harness can be helpful in achieving penetrative sex with a partner. The Pulse 3 Duo is also a great partner toy option for folks with penises of varying functionality.

If you can, skip the ableist toy manuals that come with most sex toys and instead, talk to a sex educator at your local progressive sex shop about your prospective products and how to use them safely and care for them. It’s well-documented that there’s historically been (and continues to be) a problem with unfavorable language in a LOT of sex toy user manuals and packaging. If you don’t have access to local progressive sex toy shops, shops like The Smitten Kitten, She Bop, Early To Bed, and Babeland all have online stores and customer service options that can be really helpful.

After Care

Lastly, be sure to check in. After care isn’t an option; it’s a major part of play. Talk to your partner about what feels good for both of you when play is over. Maybe you or they need to be held, or like a glass of water when things are winding down. If incontinence is a concern, it may help to have a course of action pre-planned for cleaning up in a way that helps to relieve stress or discomfort.

Ultimately, there are plenty of tools and tips to achieve the sex you want, but the bulk of the work relies on successful communication. Remember to think beyond speaking, and consider how you’re listening. Are you doing what you can to create a connection that supports your partner in voicing their wants and needs? Supporting your partner through the vulnerable parts paves way for the creativity that comes with engaging and fun sex.

A few quick references:

The Ultimate Guide to Sex and Disability

Disability After Dark Podcast

Exile and Pride: Disability, Queerness, & Liberation

Complete Article HERE!

Sex, technology and disability – it’s complicated

Media portrayals of sexuality often focus on a visual and verbal vocabulary that is young, white, cisgender, heterosexual and…not disabled.

By

People living with disability are largely excluded from conversations about sexuality, and face overlapping barriers to sexual expression that are both social and physical.

Media portrayals of sexuality often focus on a visual and verbal vocabulary that is young, white, cisgender, heterosexual and … not disabled.

My research into inclusive design explores how design can – intentionally or unintentionally – exclude marginalised or vulnerable people, as well as how design can ensure that everyone is included. That might mean design of the built environment, everyday products, or even how information is presented.

UTS has been collaborating for over a year with Northcott Innovation, a nonprofit organisation based in NSW that focuses on solutions for people with disability, to understand the barriers people face, and how inclusive design can help break them down.

When it comes to sexuality, new technologies have a role to play – but we need to look at both the opportunities and risks that these developments bring.

Starting the conversation

David* is a young man living with cerebral palsy who expresses a deep frustration about being unable to have his sexual desires met. He revealed his thoughts during discussions around sex and disability.

I can’t get into a lot clubs in my wheelchair – or restaurant or cafés for that matter. So where do I go to meet someone? Or go on a date? Let alone if we wanted to be intimate!

Northcott Innovation’s executive director Sam Frain isn’t surprised by what these conversations are revealing:

People with disability want to date, fall in love, or even fall out of love. They want to be recognised as the adults they are. In acknowledging their capacity for meaningful relationships, we must also acknowledge their sexuality – in whatever form that takes.

David faces complex social barriers too. Because it’s hard to for him to discuss his sexuality at all, coming out to his mother feels particularly fraught:

My mum doesn’t really know that I want to meet a future husband, not wife. I want to go on more dates. I don’t just want to meet other men with disability either. I want to meet lots of guys – but where can I go and how do I do this?

Inclusive sex toys

People living with disability have diverse physical and social support needs when it comes to expressing their sexuality. That means there isn’t going to be a one-size-fits-all solution. Rather we need a design approach that allows for customisation.

A new research project at RMIT, led by industrial design lecturer Judith Glover, is investigating the design of customised, inclusive sex toys.

Aside from some engineering research undertaken earlier this year at the University of São Paulo into the neurodildo – a sex toy operated remotely by brain waves – inclusive sex toys are an under-explored area of design research.

Glover feels strongly that designing sexual health products or services – whether for therapy or for recreation – should be treated as any other area of design. She acknowledges that the sex toy industry has barely started to address sex toys for an ageing population, let alone solutions for people with various disabilities:

Some of the people I meet, who are physically incapable of holding and moving objects, may have trouble communicating verbally – yet who really yearn to be able to develop their own sexual practice. Plus who doesn’t need to just get off every once in a while?

David agrees:

I really want to explore the option of sex toys more, but I don’t know what to try, or how to use it.

Social media and intellectual disability

Connecting communities together is an important strategy to overcome marginalisation and amplify the voices of people with disability.

Social media is a space where technology brings like-minded people together. But creating safe online spaces for people to express their sexuality can create unforeseen challenges – particularly for people with intellectual disability.

Deakin University and the Intellectual Disability Rights Service (IDRS) set up a closed Facebook support group earlier this year for people with intellectual disability who identify as LGBTQI. Jonathon Kellaher, an educator with IDRS, says:

Group administrators quickly realised that people who were not “out” and did not understand that group members can be viewed publicly were at risk of accidentally “outing” themselves when requesting to join the group.

To address this issue, the group privacy setting was set to “secret”. But this meant new members had to wait to be added, so it became a barrier to the group’s potential as a social connector. Deakin is now working on a project with GALFA to learn more about how people connect in this space.

Technology must promote inclusion

Then there is the elephant in the room: sex robots.

Manufacturers claim sex robots provide health and social benefits for people with disability, but researchers have been quick to point out that there’s no evidence to support the range of claims that have been made.

While it’s possible to see the introduction of sex robots as a form of assistive technology – a new way to experience pleasure, or to explore preferences and body capabilities – there’s another, more tragic, side.

Viewing sex robots as a solution to the loneliness of people with disability (or anyone for that matter), or as a remedy for a lack of available dates, risks perpetuating and exacerbating the social and sexual exclusion of people with disability.

Technology can’t replace human connection, so it’s critical that new technologies support greater inclusion for people living with disability. It’s a human right to be able to safely express and enjoy sexuality, and have the choice to live a life with pleasure.

For David, that fits in to his ideal world very clearly:

One day I really want a husband to love me, two children, and to own my own restaurant.

Complete Article HERE!

Being paralyzed does not mean I can’t have sex…

and six other myths about sex and disability debunked

Samantha Baines, Matt Tuckey and Shannon Murray debunk some of the biggest misconceptions they come across

By Poorna Bell

Despite pockets of progress, such as online fashion retailer ASOS recently releasing wheelchair-friendly clothing, there is a long way to go when it comes to representation of people with disabilities.

Ignorance abounds because of narrow depictions of living with a disability. Nowhere is this more evident than when it comes to sex.

To counter this, people such as disability awareness consultant Andrew Gurza are driving candid conversations about sex and sexuality. Andrew’s Disability After Dark podcast addresses all kinds of stories around disability and sex. Andrew, who has cerebral palsy, told the Huffington Post last year: “Whenever we talk about sex and disability ― if we dare ― it is in this painfully sanitised way that tends to tell you nothing about the person with a disability, their sex or what they actually want ― it doesn’t shed any light on how it really feels.”

Here, four men and women debunk some of the myths and misconceptions they encounter about sex and disability.

1: ‘Sex with a disabled person must be pretty boring’

Actress Shannon Murray, 41, who experienced a spinal cord injury when she was 14, tells misconceptions about sex and disability still come at her from all corners. “Just like any other human being, disabled people have desire. We want to be touched, to touch, to feel pleasure – why is that still such a ridiculous taboo? Why are intelligent people genuinely shocked when they learn that I have sex?

“If anything, I’d say some of my disabled friends are some of the more sexually adventurous and confident people I know. We have to be creative and find different techniques that work for us and spend every waking hour being adaptable to the environment around us.

“Sex is no different, though it’s much more fun.”

2: ‘I’m not a sexual being’

“There has been a real disservice done to disabled people by the mainstream media who have only told very one-dimensional stories,”  Shannon adds. “You see disabled men who use sex workers, or people who are frustrated and angry at their bodies.

“It can feel very marginalising; it’s all very woe is me. I think that suits the idea that non-disabled people have about our lives: that we’re asexual, incapable or it’s too complicated. However if you venture on to websites or publications aimed at a disabled audience you’ll see a much more rounded and interesting experience.”

3: ‘Being paralysed means I can only have sex missionary style’

Shannon says: “Some of the misconceptions I’ve faced is that I can’t have sex; that I am incapable of having sex; that I must be numb from the waist down; that because I’m paraplegic I can only have sex in the missionary position; that I can only have sex in my chair; that I can’t feel pleasure; that I can’t give pleasure; that orgasms are impossible and that I can’t have children. All of which are untrue.

“It’s also interesting how frequently strangers think it’s perfectly acceptable to ask me about my sex life within an hour of meeting me.”

4: ‘I must be shy in bed because I have a disability’

Far from it, says Joanne*, 51, a housewife who is profoundly deaf. “When I first started having sex, because I could not hear anything, the sounds I was making were extremely loud. I only found out because the man I was having sex with put his finger on his lips in a ‘sssh’ motion. I got really self-conscious – I mean, how loud was I?

“So I decided to record myself masturbating, and asked my best friend to listen to it. To my embarrassment she said I was very, very loud! I soon met my now-husband and our first sexual encounters were strained as I always stopped before things got to a point where I thought I would start getting ‘excited’.

“Finally, I decided to tell him and he laughed because he thought it was his fault and was relieved. In a sensitive way, he said he would always let me know if I was getting too loud and I’ve sort of trained myself to be less noisy.”

5: ‘My hearing aid must be a turn-off’

“I love sex and hearing aids don’t stop me from loving it,” says comedian Samantha Baines, 31, who acquired her disability at the age of 30. “I mean, I do need to take my hearing aid out before sex as they aren’t good with fluids – I don’t want to see my audiologist and explain how I got spunk in my hearing aid.

“Taking your hearing aid out isn’t a very sexy procedure when you are in the moment. It’s a bit like taking your socks off or peeing after sex – it just has to be done.”

@samanthabaines 

6: ‘It’s ok for disability to be treated as a sexual fetish’

Joanne says: “Growing up as a child I was made to wear hearing aids which really were of no benefit to me at all. When I used to go out I always was conscious of it and deliberately made sure that I wore my hair to cover them.

“When I got older, I looked just like any other woman, I just couldn’t hear. Except one guy I dated for a few months always wanted me to wear my hearing aids during sex. I think he found my deafness a turn-on which was strange.”

Shannon adds: “When the odd TV drama includes a story about disability and sex it is always negative or traumatic, or conversely our bodies are fetishised for the non-disabled gaze.

“People with disabilties are not curiosities, we are humans with wants, needs and desires. Treat us with the same respect you would any other person that you’re interested in. It’s really not rocket science.”

7: ‘You don’t look disabled so you don’t have to tell sexual partners about it’

“I’ve been guilty as anyone else of not seeing disabled people as sexual beings,” says Matt, “but I’ve realised keeping it hidden is so much harder than being honest about it. Around the time I was correctly diagnosed, I met someone in a club.

“After a couple of conversations over the next few days she started to realise that I had short term memory loss. For the first time I could be open with a woman about my memory difficulties, rather than pretending I’d just forgotten something as a one-off. Two weeks later, I’d lost my virginity to her.”

Complete Article HERE!

For Some With Intellectual Disabilities, Ending Abuse Starts With Sex Ed

Katy Park, who runs arts and wellness programs for Momentum — a community service program for people with intellectual disabilities — starts a class on healthy sexuality by asking her students to define what they want in a relationship.

by Joseph Shapiro

[I]n the sex education class for adults with intellectual disabilities, the material is not watered down. The dozen women and men in a large room full of windows and light in Casco, Maine, take on complex issues, such as how to break up or how you know you’re in an abusive relationship. And the most difficult of those issues is sexual assault.

Katy Park, the teacher, begins the class with a phrase they’ve memorized: “My body is my own,” Park starts as the rest join in, “and I get to decide what is right for me.”

People with intellectual disabilities are sexually assaulted at a rate more than seven times that for people without disabilities. NPR asked the U.S. Department of Justice to use data it had collected, but had not published, to calculate that rate.

At a moment when Americans are talking about sexual assault and sexual harassment, a yearlong NPR investigation finds that people with intellectual disabilities are one of the most at-risk groups in America.

“This is really an epidemic and we’re not talking about it,” says Park, a social worker who runs arts and wellness programs for Momentum, an agency based in Maine that provides activities in the community and support services for adults with intellectual disabilities. Those high rates of abuse — which have been an open secret among people with intellectual disabilities, their families and people who work with them — are why Park started this class about healthy relationships and healthy sexuality.

Because one of the best ways to stop sexual assault is to give people with intellectual disabilities the ability to identify abuse and to know how to develop the healthy relationships they want.

“Let’s talk about the positive parts of being in a relationship,” Park says, holding a marker while standing at a whiteboard, at the start of the class. “Why do we want to be in a relationship?”

“For love,” says one man. “And sexual reaction.”

“Romance,” adds a woman.

“How about support?” asks Lynne, a woman who speaks with a hushed voice and sits near the front of the class.

“Having support, right?” Park says, writing the word on the board. “We all want support.”

A participant helps Park hang the agenda on the wall at the start of class.

From working with the men and women here, Park realized they want to have relationships, love and romance. They see their parents, siblings and their friends in relationships. They see people in relationships when they watch TV or go to the movies. They want the same things as anyone else.

But it’s harder for them. When they were in school, most of the adults in this room say, they didn’t get the sex ed classes other kids got. Now, just going on a date is difficult. They probably don’t drive or have cars. They rely on public transportation. They don’t have a lot of money. They live at home with their parents or in a group home, where there’s not a lot of privacy.

And then there’s the one thing that really complicates romance for people with intellectual disabilities: those high rates of sexual abuse.

“Oftentimes, it actually is among the only sexual experience they’ve had,” says Park. “When you don’t have other healthy sexual experiences, how do you sort through that? And then the shame, and the layers upon layers upon layers.”

This class, she says, is about “breaking the chain, being empowered to say, ‘No. This stops with me.’ “

“I Think People Take Advantage”

The women and men come to Momentum during the week for different programs. They go kayaking and biking; they go to the library and do volunteer work at the local food bank. There’s a range of disability here. You can look at some of the men and women — maybe someone with Down syndrome — and see they have a disability. Others, even after you talk to them, you might not figure out they have an intellectual disability.

Like one small woman with short, choppy dark hair, streaked red.

She’s 22 now, but when she was 18, her boyfriend was several years older. She says he was controlling. He didn’t let her have a cellphone or go see her friends.

“He was strangling me and stuff like that,” says the woman. (NPR is not using her name.) “And he was, the R-word — I hate to say it, but rape.” She says he raped her eight times, hit her and kicked her. “So I don’t know how I’m alive today, actually. He choked me where I blacked out.”

She thinks she was an easy target for him, because of her mild intellectual disability. “I think people take advantage,” she says. “They like to take advantage of disabilities. I have disabilities, not as bad as theirs. But I think they like to take advantage, which is wrong. I hate that.”

A student takes notes in Park’s Relate class.

She says the class helped her better understand what she wanted, and had a right to, in a relationship. She’s got a kind and respectful boyfriend now.

Her friend Lynne listens and says she would like to find a boyfriend. But in her past, she has experienced repeated sexual abuse.

She talks about a time when she was 14 and “this older guy that knew us” forced her to have sex. She says she told people but no one believed her. The next year, when she was 15, she was sexually assaulted — this time by a boy at her school. “I was trying to scream,” she says, “but I couldn’t because he had his hand over my mouth, telling me not to say anything to anybody.”

Lynne, who is 38, says those rapes and others left her unable to develop relationships. “I couldn’t trust anyone,” she says. Lynne (NPR has agreed to identify her by her middle name) says this class has helped her realize she wants a real, romantic relationship and has taught her how to better find one.

“There’s A Lot Of Loneliness”

Katherine McLaughlin, a New Hampshire sex educator, developed the curriculum used by Momentum. She wrote it so that it uses concrete examples to describe things, to match the learning style of people with intellectual disabilities. It shows pictures and uses photographs.

McLaughlin says the main desire of adults with intellectual disabilities is to learn “how to meet people and start relationships. There’s a lot of loneliness.”

That loneliness leaves them vulnerable to getting into abusive relationships, she says, or to rape.

Sometimes, especially when they’re young, they can’t name what happened to them as a sexual assault. Because they didn’t get the education to identify it. “We don’t think of them as sexual beings. We don’t think of them as having sexual needs or desires,” McLaughlin says. “Often they’re thought of as children, even when they’re 50 years old.”

Sheryl White-Scott, a New York City internist who specializes in treating people with intellectual disabilities, estimates that at least half of her female patients are survivors of sexual assault. “In my clinical experience, it’s probably close to 50 percent, but it could be as high as 75 percent,” she says. “There’s a severe lacking in sexual education. Some people just don’t understand what is acceptable and what’s not.”

Most of the women and men at the class in Maine say they didn’t get sex ed classes, like other kids, when they were in school. Or if they did, it was the simplistic warnings, like the kind given to young children. “It’s easy to fall back on ‘good touch-bad touch’ sex ed,” says Michael Gill, the author of “Already Doing It: Intellectual Disability and Sexual Agency.” “That’s a lot of what they get.” And the usual warning about “stranger danger” can be unhelpful, because it’s not strangers but people they know and trust who are most likely to assault them.

Most rapes are committed by someone a victim knows. For women without disabilities, the person who assaults them is a stranger 24 percent of the time. NPR’s data from unpublished Justice Department numbers show the difference is stark for people with disabilities: The abuser is a stranger less than 14 percent of the time.

“Parents get this; professionals don’t,” says Nancy Nowell, a sexuality educator with a specialty in teaching people with developmental disabilities, an umbrella term that includes intellectual disability but also autism.

Park asks her students to weigh in on agreements with a thumbs up or a thumbs down during class.

Parents have significant reason to worry: Figuring out what’s a healthy relationship is difficult for any young person, and it can be even trickier if a person has an intellectual disability. People with intellectual disabilities are vulnerable to problems from rape to unwanted pregnancy. Some people with intellectual disabilities marry. A small number have children — and rely on family or others to support them as parents.

Still, says McLaughlin, parents often are reluctant to talk to their children with intellectual disabilities about sex. “Parents often feel, if I talk about it they will go and be sexual,” she says, and they fear that could make them targets for sexual assault.

But educators such as McLaughlin, Gill and Nowell argue the reverse: that comprehensive sexuality education is the best way to prevent sexual assault. “If people know what sexual assault is,” says Gill, an assistant professor of disability studies at Syracuse University, “they become empowered in what is sexuality and what they want in sexuality.”

Respect

Gill argues that a long history of prejudice and fear gets in the way. He notes early 20th century laws that required the sterilization of people with intellectual disabilities. That came out of the eugenics movement, which put faith in IQ tests as proof of the genetic superiority of white, upper-class Americans.

People with intellectual disabilities were seen as a danger to that order. “Three generations of imbeciles are enough,” Supreme Court Justice Oliver Wendell Holmes famously wrote in a 1927 opinion that ruled the state of Virginia could forcibly sterilize a young woman deemed “feebleminded.”

Carrie Buck was the daughter of a woman who lived at a state institution for people with intellectual disabilities. And when Buck became pregnant — the result of a rape — she was committed to a state institution where she gave birth and was declared mentally incompetent to raise the child. Buck was then forcibly sterilized to prevent her from getting pregnant again. There was evidence that neither Buck, nor her daughter, Vivian, was, in fact, intellectually disabled. In the first half of the 20th century, impoverished women who had children outside marriage were often ruled by courts to be “feebleminded.”

There was another myth in popular culture that people with intellectual disabilities were violent and could not control their sexual urges. Think about that staple of high school literature classes, John Steinbeck’s “Of Mice and Men.” The intellectually disabled Lennie can’t control himself when the ranch hand’s wife lets him stroke her hair. He becomes excited, holding her too tight, and accidentally strangles her.

The class in Maine aims to help these adults know what’s a healthy relationship and how to communicate how they feel about someone.

The main way this class differs from a traditional sex ed class is that — to help people with intellectual disabilities learn — the material is broken down and spread out over 10 sessions. Each class lasts for 2 1/2 hours. But the adults in the class are completely attentive for the entire session.

They do take a couple of very short breaks to get up and move around, including one break to dance. Everyone gets up when Park turns on the tape recorder and plays — just right for this group asking to be treated like adults — Aretha Franklin singing “Respect.” There is joyous dancing and shouts. And when the song is over, they go back to their seats and get back to work.

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