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

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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.

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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!

Sexuality education for parents of young people with Down Syndrome

By Kim Cavill

When I first started teaching sexuality education, I focused on people with disabilities, the parents and carers of people with disabilities, and professionals who worked with people with disabilities. I truly loved my work. When I moved back to the United States, I attempted to bring that work with me, pitching various disability support organizations around Chicago to teach sexuality education. The best response I got was…let’s call it polite disinterest.

That is why my heart leapt when I heard about Katie Frank, who works at the Adult Down Syndrome Center in Park Ridge, and she was kind enough to spend an hour with me to talk about her work in sexuality education for parents of young adults with Down Syndrome.

Katie has a PhD in Disability Studies from the University of Illinois at Chicago, where her dissertation was “Parents as the Primary Sexuality Educators for their Adolescents with Down Syndrome.” She has been the primary investigator on multiple research studies including individuals with DS and/or their families, and has had her work published in peer reviewed journals. I spoke to her about sexuality education for parents of young people with Down Syndrome.

I asked Katie where she usually starts with parents and carers of young people with Down Syndrome in regard to sexuality education. She said she likes to start with questions. Parents tentatively bring up the subject of sexuality education for many different reasons. Rather than make assumptions, Katie seeks out more information by asking questions like, “Why are you thinking about this right now?” Parents’ answers range from issues around public vs private behaviors, to discomfort with self-stimulation. Others do not how to respond when their child declares an intention to get married. Despite the wide variety of circumstances that lead families to Katie, research shows that most parents avoid these conversations because they’re scared, and understandably so. Katie reassures parents that sexuality education is not just about sex. In fact, many times, it is not about sex at all. Frequently it’s about dating, relationship skills, needs for companionship, or general life goals. She also tells parents that sexuality education is not just a one-time conversation, but rather a habitual use of teachable moments to both gauge and add to a young person’s understanding.

Katie says that parents, not educators, should be the primary teachers of sexuality education. For many young people with Down Syndrome, schools and supportive service agencies are ill-equipped to teach sexuality education in a way that is tailored to individual understanding and learning needs. If a young person with Down Syndrome is in an inclusive classroom, the material is not necessarily presented in a way that maximizes their understanding. If a young person is in a special education room, the teacher is highly unlikely to be even the least bit comfortable teaching sexuality education. Therefore, Katie believes that parents are best positioned to be the primary teachers of sexuality education for their children.

So, where should parents start? Katie directed me to many helpful resources, which you can find here. Some of those resources include books written by the incomparable Terri Couwenhoven. The Adult Down Syndrome Center also offers in-person services for qualifying families. These services include monthly social skills workshops on topics like friendship, dating, and social awareness. The center also offers health services and consultations.

Katie is currently running a research study at the center for family-based sexuality education training for parents of young adults with Down Syndrome. The training is free for parents of young adults (ages 20-30) with Down Syndrome. The study will investigate the effectiveness of a family-based sexuality curriculum for parents of young adults with Down Syndrome. So far, Katie is pleased with the results of the study, which measures improvement in self-efficacy and attitudes around sexuality and healthy relationships, as well as increases in parent-child communication on sexuality-related topics. Participants must be able to communicate in English and be available to meet three times over a four week time frame for three hours (9 AM – 12 PM). A follow-up survey must be completed one month after the final training. It is offered at the Adult Down Syndrome Center in Park Ridge, IL, and there are several date options available through the summer and early fall (of 2017). Please contact Katie, or call 847-318-2303, if you are interested in participating.

When I worked in sexuality education for people with disabilities, many asked me why my job existed at all, implying that people with disabilities have no need for this information. That is simply untrue. Sexuality education includes information about puberty, social expectations, relationship skills, what is/is not legally permitted, body autonomy, and risk-management. Those topics are relevant to all human beings, regardless of whether they are typically-developing or not. The mechanisms for delivering that information and the level of detail required are the only things that change. I was very grateful to meet Katie, who is doing the important work of making sure families have access to the information and services they require to live healthy, fulfilled lives on their own terms.

Though I wish I could summarize all of Katie’s insight from the fascinating hour we spent together, I can at least leave you with this:

“None of us knows all the answers to all the questions, which is why we all must learn to keep asking.” – Katie Frank

Complete Article HERE!