'We wanted to provide sex-positive, inclusive education for free'
By Louise Kinross
Kristyn White (photo right) is the literacy facilitator at Creative Options Regina who leads Tell It Like It Is, a sexual health and wellness course for people with intellectual disabilities. The course covers relationships, dating, gender and sexual identity, body image and safer sex practices. Kristyn developed her interest in this topic as a support worker and is writing about her experiences supporting the sexuality of people with disabilities as part of her master's research at the University of Regina. She recently spoke at a BRI Research Rounds at Holland Bloorview.
BLOOM: You talked about four myths about sex and people with intellectual and developmental disabilities: that they're not interested in sex; not able to consent to sex; perpetual children; or, that if taught about sex, they will be sexually aggressive. Which do you think is the most common myth among health professionals?
Kristyn White: That's a good question. Honestly, the one I see a lot is the notion that people with disabilities are perpetual children. I see that perpetuated in many ways, even in the way we speak to people in a tone of voice that we wouldn't use with other adults. And in the lack of autonomy people have. That's the one I notice the most, and a lot of us have been guilty of it.
BLOOM: What myth is most common among parents?
Kristyn White: In addition to the 'perpetual children' one, parents often tell me their child isn't interested in dating and relationships. I don't know if that's because they're so uncomfortable talking about their child being sexual, but I think with parents that's the one I hear most often.
BLOOM: In your talk here, you spoke about how you got interested in this topic when you were working with some youth at a pool and realized one of the young men was masturbating in the change room. You felt unprepared to handle the situation. Is masturbation a tough topic for health professionals, parents and support workers?
Kristyn White: Yes! Absolutely. In general it's a taboo topic. We don't usually talk about our own masturbation practices, even with friends.
If it happens in public it can be uncomfortable and can get people in trouble. I've supported people who have been banned from places, and there's a lot of shame associated with that. It's so personal and has to be done in private, and some people struggle with public and private spaces because they haven't been taught about that.
BLOOM: Is there a simple way to talk about masturbation?
Kristyn White: The first thing is to normalize it. Remind people that it's normal and natural and most people do it. If someone is interested, even at a young age, there's nothing wrong with it. Then, remind the person, in a casual way, that if you want to do this, no problem, let's figure out places where you can have private time. Some people need a conversation about private and public spaces, and others may need visuals of where private places are.
Some people, like those who live in group homes, may not always have access to privacy. That's a real issue. They may live with many people or share a room. Or maybe they don't have a door on their bedroom, because it's deemed a safety risk.
In general, the bedroom is the best option, but if you don't have that privacy, it could be in the bathroom with the door closed.
We have to make sure we have a conversation with caregivers about knocking first on the door and not barging in. As caregivers we may feel like we have ownership of the space. We need reminders that we're guests in someone's home, even if we've worked with them for years.
BLOOM: You have fun Do Not Disturb door cards. Could a professional or parent request them to share with youth?
Kristyn White: They were created out of a need. People told us caregivers or support workers were coming into their room and not knocking. We decided to find a cute solution. I hand them out when I teach classes and at trade shows. They've been really popular. Yes, someone could e-mail me about getting some.
BLOOM: Your free, nine-module curriculum is fabulous. It's very comprehensive and I think it would be useful for any youth, with or without disabilities. Why was it initially created?
Kristyn White: It's been about 10 years in the works. It stemmed from a need for more education. We were supporting complex folks who were dealing with a range of different life situations. A vast majority of people we were supporting had experienced sexual violence in some way. On the other side of things were people who were interested in sex and dating and masturbation, and maybe were doing things that were getting them in trouble.
We wanted to provide sex-positive, inclusive education for free. We wanted to make sure the rights of people with disabilities are being upheld. People deserve to have this information and it's also important for caregivers and parents and health professionals.
We focus on the different types of learning styles out there. So with one topic we might have a discussion with participants, as well as watch videos and use visual resources. There's a lot of repetition. For example, we talk about consent in almost every module, and that's very intentional.
The curriculum is a facilitator's guide, and you can adapt it. If it's too complex, you can pare it down and take little pieces as needed.
We hired actors with disabilities for our videos so there's that visual representation.
BLOOM: Is this a curriculum that anyone could download and use?
Kristyn White: It's free to download. We've had people from Australia, Japan, India, all over Europe, the states and Canada download it. We also do virtual train-the-trainer workshops.
BLOOM: Has anything surprised you about the response of participants when you lead the course?
Kristyn White: I am always surprised by the information people do have. Attendees often have so much experience, knowledge and stories that they want to share. I've learned a lot from them.
I've been surprised by how lonely people are. People crave relationships and connection and that really shows in the class. People are very interested in dating and friendships. It's been eye-opening to me how important relationships are, whether they're romantic or not. And people's willingness to learn and be open and honest.
BLOOM: I printed out the modules. Wouldn't it be helpful for all health professionals to do that and familiarize themselves with the material?
Kristyn White: Yes, I would 100 per cent agree. It's still such a tricky conversation for most people so just having the information is a good first step. We don't want professionals to be shocked in a situation, and shock takes over and they're not sure how to handle things.
BLOOM: I had a friend who went to a sexuality workshop for parents of autistic youth, and they talked about providing your child with a masturbation kit. I can't remember what was in the kit, but is that something you do?
Kristyn White: That's not something we offer in the course. But I know it's something many support workers may address individually with the person they work with. They may buy them a sex toy or talk about lubricant or show them how to use a sex toy on a model.
Part of being sex-positive is being supportive not just of people who want to have sex, but also of people who don't want to have sex. We have both come to our classes.
BLOOM: You said it was important to understand sexuality from a rights perspective. You included a quote from the United Nations Convention on the Rights of Persons with Disabilities about people with disabilities being entitled to sex education, partners and being parents.
Kristyn White: This is information a lot of people don't have. It wasn't until I started my master's research that I learned that people have a right to pleasure, to companionship and relationships and sex, if they want those things.
Sometimes people are being denied their rights and we're not even aware that we're denying those rights.
BLOOM: I'm imagining that expressing your sexuality may not be encouraged in group homes?
Kristyn White: Many organizations with group homes do incredible work in supporting people with disabilities. However, some still operate with outdated, restrictive care models that echo past institutional practices. In some settings privacy may be limited and policies can restrict personal expression, including the expression of sexuality.
BLOOM: What do you say to a parent whose child has more complex disabilities? And they're concerned that they may set them up for disappointment if they present dating and sex as an expected part of their life?
Kristyn White: I'm sure a lot of parents feel that way. This isn't my area of specialization, but I'm doing a research project about sexuality in people with complex physical disabilities.
Some people have said 'I'll never be able to have a relationship or sex.' I don't know how to go about changing stigma. I do know people who have found relationships and ways to connect with people that aren't as traditional as the relationships I might have. And I find people say they still want the information.
BLOOM: How do you prepare youth for the stigma they may face in the dating world?
Kristyn White: We have a lot of conversations about finding the right person to date. And being frank with people that if someone is making fun of you, whether it's your body or your looks or weight or disability, then they're not the one for you.
I haven't met anyone who isn't well aware of the stigma placed upon them. Many have experienced bullying or some type of sexual abuse.
BLOOM: You talk about pornography in the curriculum in a non-judgmental way.
Kristyn White: Yes. This is a topic that parents and caregivers can be apprehensive on. I always tell people that watching porn is very normal, and not wanting to watch it is also okay. We talk about what porn is: any video or picture or media or written content involving people doing sexual things for entertainment or pleasure. We talk about how it has to be watched in private, and can't involve someone under 18. And that if you see something that makes you feel uncomfortable, or that is violent, to talk to someone you trust.
Go to Tell It Like It Is to read and download the sexual health and wellness course. Kristyn White can be reached at kristyn@inclusionregina.ca.
Like this content? Sign up for our monthly BLOOM e-letter, follow BLOOM editor @LouiseKinross on Twitter, or watch our A Family Like Mine video series.
