The Importance of Expanding Sex-Ed to People with Developmental Disabilities

  

Posters from a 2008 sexual health campaign in the U.K., "It's My Right," that advocated for the sexual health and education for those with developmental disabilities.

Back in November, a Swedish nurse and two special education teachers made headlines when they published a sexuality education textbook for students with disabilities. They argued that when it came to sex education, Swedish students with developmental disabilities were left behind—lacking the tools necessary in order to navigate their bodies, relationships, and desires. In the United States, about one in six children has one or more developmental disabilities. So how does the U.S. fare when it comes to teaching students with mental disabilities about sexuality and relationships? What part does sexuality education play outside and in our special-education classrooms?
 

The Swedish book that sparked so much conversation is not the only guide to teaching sex-ed to people with disabilities. I spoke to Katherine McLaughlin, a long-time sexuality educator for adults and youth with mental disabilities about the barriers to offering comprehensive sexuality education to people with disabilties, how to talk to those with disabilities about their bodies, and the importance of adequate sexuality education for all. Mclaughlin worked as a sexuality educator and trainer for Planned Parenthood of Northern New England for over 20 years, is the co-author of the curriculum guide "Sexuality Education for Adults with Developmental Disabilities," and now leads online and offline workshops for parents and educators striving to provide better sexuality education to their children and students with disabilities.

Sex educator Katherine McLaughlin teaching a class. 

KATHERINE MARRONE: You’ve been working as a sexuality educator for adults and youth with mental disabilities for over 20 years. Can you tell me a little bit about how you got into this line of work?

KATHERINE MCLAUGHLIN: I worked at the Planned Parenthood of Northern New England when I first became a sexuality educator and trainer. I went into schools, worked with parents, and also did professional trainings. My work with the developmentally disabled really began when special education teachers would call me, looking for help with how to do sexuality education for youth with mental disabilities.

The training I later developed came from those requests and working with different developmental disabilities agencies. All throughout the trainings that I did, my hope was to make people comfortable so that they would carry on and do the trainings themselves.

That led me to develop a sexuality education curriculum for adults with mental disabilities, much of which is based on what we call “sexual self-advocacy.” A lot of people with disabilities who refer to themselves as self-advocates say they get more support when it comes to getting a job, or an apartment, but when it comes to sexuality or relationships, there’s less of that support. The focus of the curriculum is to be a sexual self-advocate—which means standing up for yourself, saying that you want to be in relationships, but also standing up for yourself within those relationships.

What are some of our society’s misconceptions when it comes to sexuality and people with mental disabilities?

People with mental disabilities get messages from our culture that say, "You’re not sexual, you shouldn’t have children, you can’t make good decisions, you’re oversexed, you’re a child and you can’t make good decisions, you have to be protected and people are going to abuse you."

And it’s tricky because there is a high rate of sexual abuse among people with disabilities, so there’s some truth to it, but it’s also very negative. In a lot of my trainings, I try to get people to think about our culture and the negative messages we give about sexuality—in general—and then the ones we give kids with disabilities in particular, so that we can change those narratives and send out positive messages, instead.

I also think that, as a culture, when we think of the word “sexuality,” we think of the word “sex.” So when we talk about sexuality education, people think that you’re teaching someone how to have sex. That’s a piece, but it’s such a small piece. It’s more about relationships and communication. Many agencies will call it “relationship training” instead, for that reason.

I think also growing up in a culture—all of us—where there were negative and shameful messages is hard to overcome. One question I ask participants of my courses is, "What messages did they get growing up about sexuality?" For most people, they were all pretty negative—or there was nothing. Nothing was said. And that sends a message as well.

I’ll admit: During the (brief) sexuality education I got growing up, sexuality and relationships for people with mental disabilities wasn’t something that I thought about.

Yeah, and I think another piece of this is that students with disabilities don’t learn about sexuality from the people they hang out with, as those without disabilities often do. Whether or not that information is accurate, those without mental disabilities are still getting something. Many people with disabilities don’t have that kind of informal learning; there’s more isolation. Parents aren’t always comfortable with talking about it, which is why some of my workshops are for them.

If we, as parents, don’t teach healthy sexuality, the culture will teach unhealthy sexuality.

If schools do take it on, I think it’s great, because there’s a lack of it. I redesigned my curriculum for schools as well, and I do sell some of them to schools, so it seems like it’s an issue that they want to address.

You say that there’s a high rate of sexual abuse within the community of people with mental disabilities—particularly because of their susceptibility to exploitation. Because of that, some parents are wary when it comes to talking to their kids about sex. Wouldn’t sexuality education help curb that number, though? Especially when it comes to education surrounding consent?

Absolutely. And I think the other piece with sexual abuse correction is that the nature of those with mental disabilities is often agreeable and one of pleasing others. So part of sexuality education is giving them the tools to say "no" and speak up for themselves. I think women with disabilities have a harder time with that. Since women in general are pressured by society to please others, women with mental disabilities are perhaps even more so.

So Sweden was in the news recently for their publication of a sexuality education textbook for students with developmental disabilities. Is the U.S. lagging behind when it comes to sexuality education for those with developmental disabilities?

We do have some [college] textbooks on the subject but I would say we are very much lagging behind. I think there are more resources for adults and a little bit for teens, but I think that for teens with disabilities sex education is less accessible than for those without.

When you look at other countries where sexuality is thought of in a more positive way and sex education is started earlier, you see lower rates of teen pregnancy and STIs. In countries where you talk about sexuality, you see better results.

We have these barriers here that you just don’t talk about it. I think we struggle with some myths: If you talk about sex, someone will do it. When I work with parents, that’s something I try to dispel. The more you talk about [sex], the more likely they’ll wait and the more likely they’ll use protection. Plus, it’s not like the media’s not giving them any ideas about sex!

What’s the best way for educators in the U.S. to talk to those with developmental disabilities about sex?

You have to be really concrete. You can’t just use the word “sex,” and assume everyone knows what that means. You need to be a bit more graphic with it. It probably would be good for us to be more concrete with everybody, anyway. But you can’t get away with being ambiguous with the developmentally disabled community like you can with others.  

If someone with a disability is 17 years old and hugs a stranger, many times strangers will say, “Oh, it’s okay, he didn’t mean anything by it.” But if someone who was 17 without a disability did that, you would be offended. So we don’t treat people with disabilities as their age [but] that would be really helpful. If they’re 17 but have the cognitive age of five, they’re still 17. You have to teach the same things to them that you would do any other 17 year old, you just have to teach it differently according to their cognitive abilities.

For example: There’s a developmental disability agency that watches soap operas with those with developmental disabilities and then talks about sexuality and relationships through that, so I always tell parents to use the media. It’s here to stay, so why don’t we use it to talk about sexuality?

What are the consequences if we don’t? What do you say to parents who are opposed to talking to their kids with mental disabilities about sexuality?

There’s STIs, unplanned pregnancies, exploitation, there’s all kinds of possibilities—for anybody, but as a person with a disability, you are more vulnerable. Not teaching adequate sexuality education makes people more at risk, as well as lonely and isolated.

People with mental disabilities want what everybody wants, so how do we support them to have relationships, to get married if they want to get married? How do we support them in having that? They often say that their non-disabled siblings get treated very differently than they do. So how can we be supportive and helpful to them?

If a parent has an issue with talking about it, and I know the parent really well, I might ask, "What worries you about talking about this?" I try to find out what makes them not want to [talk] and to dispel any myths they might have. I tell them that sex education is knowledge, which is power—versus the idea that ignorance is bliss. I tell them, "I know you’re worried. We all worry." I try to reassure them that talking about this is a positive thing.

by Katherine Marrone
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Katherine Marrone is interested in gender, sex education, and sexual politics. Follow her on Twitter at @kmarrone1.

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