Feature Issue on Sexuality and Gender Identity for People with Intellectual, Developmental, and Other Disabilities

Doubling Down on Stigma


Greta Bauer is academic chair in sexual health, professor, and director at the Eli Coleman Institute for Sexual and Gender Health at the University of Minnesota Medical School in Minneapolis. gbauer@umn.edu

Janet Stewart is managing editor of Impact. stew0390@umn.edu

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Author Greta Bauer

Much of your work focuses on the social marginalization aspects of sexual health, including the marginalization that people with disabilities face, often in the healthcare setting. How are people with disabilities faring in the health system today when it comes to their sexuality and gender identity?

The work I do is around stigma and social marginalization as it plays out in different ways, including in healthcare experiences. We find that when we start getting into sexuality, that’s where, for a lot of people with disabilities, their experiences with physical and mental care providers run into a wall. Often, the experience goes well until it touches on sex, and then nobody knows what to do.

If you are nonbinary and have a disability and maybe you’re from a culture that has different views than a western view, for example, does this compounding aspect play a significant role for people?

Yes. There’s a tendency for providers to conflate things and there’s a bit of a double bind in accessing services. Providers might say, “You’re autistic, so you’re not really trans; you’re just ruminating on gender,” for example. This can make it difficult for people to get the kind of help they need, or it can complicate medical care that’s unrelated to those things if providers want to make things about their disability or gender instead of the medical issue, for example. So, there are real issues in terms of accessing services in that way, from providers or others who don't really understand. They want to conflate things, and sometimes in a way that discounts one aspect or another aspect of who someone is.

Another thing to note is the work that people do when they're members of multiply marginalized groups. And this is something for which one of my teams has actually developed a measure. We're calling it the identity siloing measure because we wanted to capture the work that people do when they have to navigate multiply stigmatized or marginalized identities. When they're in one setting, they might need to play down certain aspects of themselves, so they might work really hard to norm themselves. For example, if they have to talk to somebody about their gender or their sexual orientation and they don't want it to be focused on their developmental disability, or in another situation it may be the other way around. So, this measure captures that work involved in navigating situations that might not be safe or friendly to someone who belongs to minoritized groups, or that might simply be exhausting. And of course, this plays out further across ethnic and cultural groups as well.

These are all things that compound the work that people have to do to protect themselves. This work isn’t published yet, but it will capture a wide variety of situational and interpersonal scenarios. It's capturing the different work that people do to present themselves, how they have to communicate and how they have to disclose or not disclose particular things to different people, or in different settings.

Is there something as a researcher that has really intrigued you, or still is intriguing you about the intersection of disability and sexuality or gender identity?

I think when we're talking about neurodiversity, it's been an interesting process doing community-based research and watching the dynamics of the different groups working together across this project. What's interesting to me is the role of social cues in teaching people to not talk about gender and not talk about sexual orientation. Neurodiversity at times creates situations where people are less responsive to those social cues, and that provides an opportunity for authenticity that may be more challenging for other people. There are just some lovely strengths there and neurodiversity and authenticity can play out really well for people.

When young people start trying to talk about their gender, if they realize their gender is not what parents or other people are expecting, that there's this kind of friction, or potentially, conflict around that. I think that’s one situation when being a little less responsive to small social cues might be an advantage. A lot of people who try coming out to their parents and family very quickly get the message that this is not something we talk about, or people aren’t interested in hearing it, or they think it’s a phase, or just don’t believe it. And people can then respond by being quiet about it for another 10 years before they try telling their family again. One of the strengths of neurodiversity is that it has the potential to allow some people to be more communicative about who they are.

So, there are clearly cases where disabilities may be advantages, not only because of communication, but because with adversity and with difference can come a really good skill set. I’m not talking about situations with horrible adversity, the kinds of things that crush people, but when you have to explain about who you are or why what you’re doing might seem weird to other people, you can develop a really good skill set that translates quite well if you have to come out later in life, for example, because you’re used to dealing with that.

What else are you working on now?

There's been a lot of discussion about the fact that among trans people, especially younger trans people, there is a higher proportion of people with autism than in the general population. Before coming to the University of Minnesota, I was leading a couple of large population studies in Canada, that I am still involved with. One of the studies is very large and looks at intersectionality across nine priority populations within trans and non-binary communities, meaning groups that have very specific policy needs or for which we really don’t have good data. One of those groups is people with disabilities of all types. After we produced an initial report, that group chose a focus on autistic trans and nonbinary people as a focus for a more in-depth paper. That paper will be coming out soon, and amongst other findings, documents issues with unmet healthcare needs among trans and nonbinary people who are autistic.

Today, it seems mainstream society has come a long way in acceptance of sexuality and gender differences, and simply of people with disabilities as sexual beings. And yet, there also are a number of states scaling back sex education and creating legislation that could scale back LGBTQ+ rights. What do you make of that as a researcher in the field?

It's not just education being scaled back. It’s very basic books that are being banned such as ones that explain what happens to the body during puberty. Talking about body parts at young ages is being banned. And having certain types of disability can shape one’s risk of sexual abuse, so one of the critical ways we protect against that is to make sure people have an understanding of bodily autonomy and the language to communicate about their bodies. Some of these changes that we’re seeing in policy are putting people at risk in terms of safety. Another concern is that we speak too narrowly about sexual health. People understand sexual pleasure in a lot of different ways, including solo sexual experiences as well as partnered ones, that involve emotional pleasure as well as sexual. There is a lot of sexual wellness that is really just about one’s self and the relationship with one’s own body. So, I just worry that the more we narrow the approach and education around sex, the more we restrict it to older ages, the more we don’t talk about bodies, the more we put people with disabilities at risk for sexual abuse and potentially compromise their well-being because we are taking away options for intimacy and close relationships. It’s a concern for everybody, but there’s even a greater concern for people with disabilities.

Is there something the disability field can learn from the sexuality/gender identity field, or vice versa?

That's a great question, because my work has always included people with disabilities but it has not always been the focus of the work. The work is around identity and personal expression, and there’s a whole body of expanding work in this area that is about how we understand stigma and discrimination on a day-to-day level. How does it affect health, physiology, and well-being, and how do people internalize those messages about themselves? There’s a lot we can bring to understanding disability from what we are learning from research in sexual orientation and gender identity, and in race and racism as well. We’re coming to understand a lot more about how everything fits together.

Given the current political climate, can we realistically make progress now?

Well, that’s a great question for somebody who has just moved from a Canadian context to a U.S. context, for example, because my work had quite a range of different effects on policy and practice in Canada, at the provincial and national level. And it's a joy as a researcher to see your work taken up and used. When I started, policymakers weren't really interested in being at the table. But as the work went on, there were groups like the Canadian Human Rights Commission that got involved as partners in our research, so we could produce work that would feed right into the work that they were doing. I think in an American context, there's less political will at this point to set up those kinds of relationships, to work to produce information together. We also have to acknowledge the way conspiracy theories in science kind of came together during the pandemic. I'm seeing more of a deliberate, disturbing misinterpretation of research and that's what's really changed in the time that I've been doing research. Still, an approach of evidence-based advocacy and evidence-based change, where we do knowledge translation that involves people early on, I think, has a lot of possibilities because when we're producing things in ways that people can use, that has the potential to move us forward with regard to scientific knowledge and health.

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