Only five states in the U.S. require sex education to be made accessible to people with disabilities. Oregon has no such requirements, but a partnership between Oregon Health Authority, Oregon Department of Education, the University of Alaska Anchorage and Oregon Health and Science University aim to fill this gap though a program for people with intellectual and developmental disabilities.
The Friendships and Dating Program provides participants the skills to promote healthy relationships and sexual health in their communities. Lindsay Sauvé is the program and evaluation manager with the University Center for Excellence in Developmental Disabilities at OHSU. Morrigan Hunter is a community research liaison with the center. They both join us to discuss the impact this program is having and what it takes to make sex education more accessible.
Note: The following transcript was created by a computer and edited by a volunteer.
Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. Only five states in the country require sex education to be made accessible to people with disabilities. Oregon is not on that list, but a partnership between the State of Oregon, the University of Alaska at Anchorage and Oregon Health and Science University aims to fill that gap through something called the Friendships and Dating Program. It’s aimed at providing young people who have intellectual and developmental disabilities the skills to develop healthy relationships and sexual health.
Lindsay Sauvé is a program and evaluation manager with OHSU’s University Center for Excellence in Developmental Disabilities. Morrigan Hunter is a community research liaison with the center. They both join us now. It’s great to have both of you on the show.
Lindsay Sauvé: Thanks, Dave, excited to be here.
Morrigan Hunter: Thank you.
Miller: Lindsay first, we’re talking about a program for students ages 16 to 25 with developmental or intellectual disabilities. Can you give us a sense for what that means, the various kinds of diagnoses that might fall into those categories?
Sauvé : Definitely. Well, these are students for the most part in Oregon transition programs. So these are programs that are typically connected to a school district, for students who are in the 16, usually to 21 age, who are on an individual education plan. They’re receiving disability services through the state and they are receiving this education through their transition program. These could be students with intellectual and developmental disabilities. Those would be disabilities like autism or down syndrome or cerebral palsy, those kinds of diagnoses.
Dave Miller: And Morrigan, how much and what kind of sex education might students like these have gotten in the past? Say in Oregon, before the program that the two of you were involved with got underway, or currently in other states all across the country?
Hunter: I think that’s difficult to answer definitely because of course, with all things relating to sex education, it really depends on the school that you go to. But one of the things that we do know, unfortunately, is that oftentimes students with disabilities, they don’t always get the same quality of sex-ed that their peers get. For instance, if they are receiving special education, we know that sometimes they just might not have access to the same types of information and education that their peers do.
Miller: What are the repercussions of, say, not getting an appropriate level or amount of sex-ed, or curriculum that’s not tailored to students with intellectual or developmental disabilities? What follows from that?
Hunter: Thank you for asking. I think there can be a number of consequences, unfortunately. I’m sure you’ve heard of the NPR article that came out a while ago about the high rates of sexual abuse that this population experiences, unfortunately. And we know that abuse rates are more likely when people don’t have information about healthy relationships and consent and boundaries and how to talk to someone if you are in an unhealthy relationship. So that’s part of it, of course.
And then obviously someone is not going to benefit from sex-ed if that information is not made accessible to them. If, for instance, there are too many written documents or a lot of powerpoint slides that might not be accessible, that might not be as helpful as being able to perform role-plays in class to understand concepts in a more ‘hands on’ way.
Miller: Lindsay, where do you all start with this curriculum? What’s the base for it?
Sauvé: We launched this program in 2020 with support from a federal grant through the Oregon Health Authority. And the idea is to train teachers in these transition programs to implement the curriculum. Teachers participate in a seven-hour online training, and this is through our partners at the University of Alaska ‒ they are the ones who developed the curriculum. We train teachers to implement the curriculum to students in schools.
It’s typically a ten-week curriculum where students receive an hour and a half lecture version of the curriculum. So they would get the information and the content and be able to interact with the information. As Morrigan described, there’s a lot of videos and role plays and kind of visual ways of teaching this information. And then the second lesson of the week is actually a community outing where students go out into the community. Maybe they go to a Starbucks or to a mall or to a movie theater to interact with the information and apply the information to real-life settings.
Miller: Morrigan, can you give us a sense for what that looks like? I mean, if a class, say, goes to a Starbucks, what are they doing?
Hunter: So, a lot of teachers have described this as people watching, where the students would essentially ‒ from a respectful distance ‒ observe people out in public and have discussions about what their behavior might be reflecting about the types of relationships that they’re in. So, can they tell if someone is dating someone based on how they’re acting in public, that kind of thing.
Miller: What’s the connection between that and the broader themes and lessons of this curriculum? I mean, what follows from that?
Hunter: I think that it can be really helpful for giving a sense of ‒ particularly for young people who might not have a sense of what other people’s relationships look like ‒ of what that can look like in other people. To kind of get a sense of, these are some of the behaviors that you might expect a couple to engage in
in public. These are things that you don’t see in public. Like certain types of public displays of affection may be okay, but what’s not okay, that kind of thing.
Miller: Lindsay, what have you heard can be the most challenging part of these classes for teachers?
Sauvé: I think one of the things that we’ve heard from teachers is that there are a lot of different kinds of needs in the classrooms. And so it is really hard to have a one-size-fits-all curriculum that meets individual learning needs. Fortunately, we’re working with a curriculum that was designed particularly for people with intellectual and developmental disabilities, and it was actually designed with the input of people with intellectual and developmental disabilities.
So this curriculum is incredibly adaptable. And we do collect fidelity surveys from our teachers, so we learn from them every week what’s working well and what isn’t. We’re learning that teachers are incredibly creative with this curriculum and have learned to use some of the resources that are available that go along with the curriculum to provide individualized education, which has been really an important aspect of making sure that the content is accessible to the students.
Miller: Lindsay, how do you deal with the really important, but I imagine challenging question of consent?
Sauvé : Consent is a really important part of this curriculum and it’s actually brought up... The curriculum is divided into ten weeks and each week has a different topic, but consent is a topic that comes up multiple times throughout the curriculum whether that’s talking about personal boundaries ‒ and for instance, asking people if they want a hug versus just assuming that people want to be touched, those kinds of things ‒ up to negotiating sexual consent. And I think what’s important to note is that there’s assumptions that people with disabilities cannot consent, and we know that to not be true. We know that people with disabilities can learn about consent and they can learn to give and receive consent.
And so the important piece, as has been discussed, as Morrigan brought up, [is] providing that information in ways that are accessible. So teaching about consent and using a handout with text that somebody has to read, if that person has reading challenges, is not going to be very effective. But having a video that shows different scenarios where consent is given and received, or having a scenario where a teacher can model and act that out with another teacher in front of the classroom. These concepts are not unlearnable, they just need to be taught and those adaptations need to be made so that young people with different learning needs can access that information.
Miller: Well, just to dig deeper into this, Morrigan. For a 13- year-old who does not have an intellectual or developmental disability, we have decided legally as a society that they cannot give their consent for a whole variety of decisions that they might make, including decisions about sex. I mean, that that’s why the crime of statutory rape exists. But what if somebody is at the intellectual level, say, of a 13-year-old, but is 25? I mean, how do you navigate that?
Hunter: One of the things that… Part of the work that we do is, I think, pushing back against some of the assumptions that someone might be an adult but may be mentally a child. And we know that a lot of harm actually comes from some of those assumptions. And as Lindsay mentioned, primarily all the students who take these classes are for the most part adults and that, even though they might not be seen as adults due to the unfortunate infantilization that happens, that is important to recognize that.
Miller: That does remind me of a book that I have never read, but I saw mentioned in a good Mother Jones article about this issue. It’s by a Syracuse University researcher and it’s called Already Doing It. What is the status quo without targeted sex-ed?
Hunter: I’m not sure if I understand your question?
Miller: Sure. I mean, to the extent that I understand this, there’s a Syracuse University researcher who has studied this issue deeply, who wrote a book called Already Doing It, with the idea being that whether or not people get sex-ed, there’s a good chance that they are engaging in sexual activities. I’m wondering if you can help us understand to the extent that you’re aware of it, the status quo. The repercussions of that in the absence of sex-ed?
Hunter: Yes. As a disabled person myself, I can speak to that as well. But, yes, I mean, disabled people, people with disabilities, regardless of a disability or not, have the same range of sexual expression as non-disabled people, including asexuality, including LGBTQ spectrum. So, yes, people are engaging in sexual activity. We know that. And not having information about how to make safer decisions, not having information about what is consent ‒ how to negotiate, how to advocate for yourself ‒ that does only cause more harm. And that’s part of why we’re doing the work that we do, is to try to give people information to reduce some of those things.
Miller: Lindsay, sex-ed has been politicized for decades or probably much, much longer. In recent years, the teaching of issues surrounding gender identity has come under conservative fire, has been wrapped into this. Has the work that the two of you and others are doing, has that been targeted as well? I mean, specifically, sex- ed for people with intellectual and developmental disabilities?
Sauvé: Our teachers have had some experiences navigating those conversations within their communities. And we believe it’s important to provide information to students that affirms who they are. And so our curriculum has lessons and content that talks about sexual orientation and gender identity because we know that people with disabilities as a population experience different sexual orientations and experience different gender identities.
So to provide education that doesn’t affirm those students leaves those students out. And we know that young people in this country who feel left out and feel discriminated against have really high rates of poor mental health and high rates of pseudo-suicidal ideation and high rates of suicide. So there are really significant public health implications to refusing to provide information that includes everybody and makes people feel safe and welcome and part of their community. And so that’s something we stand by with this curriculum. And we really work closely with our teachers to work with their communities and provide the entire content of this curriculum so that all students feel safe and welcome
Miller: Lindsay Sauvé and Morrigan Hunter, thanks very much.
Sauvé / Hunter: Thank you Dave.
Miller: Lindsay Sauvé is the program and evaluation manager with the University Center for Excellence in Developmental Disabilities at OHSU. Morrigan Hunter is a community research liaison with the center. They joined us to talk about a program that is all around the state of Oregon now to make sex-ed accessible for young Oregonians who have intellectual or developmental disabilities.
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