It’s probably not something most people think about on a daily basis, but people with severe intellectual or physical disabilities often have the same sexual needs and desires as the able-bodied.
Don Kulick, an anthropologist at Sweden’s Uppsala University, describes sexuality as a marker of adulthood. Adults can decide whether to have sex, and who to have sex with in a way children can’t. He explores these ideas in his latest book Loneliness and its Opposite: Sex, Disability, and the Ethics of Engagement. He told KGOU’s World Views adults with significant disabilities are usually prevented from having any kind of sexual contact or erotic life by the people who care for them.
“If somebody wants help, for example, to be able to masturbate, and that seems like it might be a rather esoteric kind of problem, but imagine if you can’t move your limbs,” Kulick said. “There’s two ways of dealing with that. As somebody who works for, with, and loves, and cares for people with disabilities, you can either ignore it and hope it goes away, which it won’t. Or you can find ways of actually facilitating sexuality without actually having sex with that person.”
His book compares the response in Sweden and Denmark – two Scandinavian social welfare societies where the state provides medical care. But he says in Denmark, the state facilitates a sexual life for its disabled residents in a way its neighbor doesn’t.
“In Sweden, that’s sort of a mantra – and the mantra is from people who work with people with disabilities – the mantra is, ‘If I don’t do anything, at least I haven’t done anything wrong’,” Kulick said. “In Denmark, it’s really the opposite, and that is, ‘If I don’t do anything, then I really have done something wrong, because I’m actually not allowing this person to develop in a way that most adults would like to develop.’”
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FULL TRANSCRIPT
BRIAN HARDZINSKI, HOST: Don Kulick, welcome to World Views
DON KULICK: Thank you very much. It's very nice to be here.
HARDZINSKI: I'd like to start by talking about your latest book. It's called Loneliness and Its Opposite: Sex, Disability, and the Ethics of Engagement. And it centers on how Denmark and Sweden handle issues of sexuality and disability. Can you tell me a little bit about some of the background of these issues in those two countries, and maybe give me a brief of overview of this book.
KULICK: Well, I think first, it's important to understand why this is an important issue, sexuality and disability. Many people think it doesn't really concern them. Many people think that it's an issue that is very peripheral to many of the problems that we have in the world today. The fact is that sexuality is a marker of adulthood. So one of the differences between being a child and being an adult is that as an adult, you can decide about your sexuality. You can decide whether to have sex. You can decide who you would like to have sex with. As a child, you can't do any of those things. So it's really one of the most important markers of division between being a child and being an adult. And what one finds is that people, adults, who have disabilities, who have significant disabilities, are often, actually usually, prevented from having any kind of sexual contact by people who care for them. And so what we wanted to do in this book is to look at how that actually plays out in practice. How that works. Because many people don't know anything about that. It's not a topic that is widely researched. It's not a topic that people are particularly willing to talk about. So the book is about, it's a comparison between Sweden and Denmark. And the reason we wanted to compare two social welfare societies is that if you look at a place like the United States, it's really about money. So if you have money, you can pretty much do whatever you want. In a social welfare society like Sweden or most of Europe, the state actually provides care. So the state gives you things, and the state cares for you in ways that really can only be dreamed about here in the United States. But what that means is the state provides care, but what we found is that in Denmark, the state also facilitates a sexual life. Facilitates sexual education. It facilitates human dignity in a way that isn't done in Sweden. Another reason we wanted to compare those two countries is that for Americans, for example, the difference is very, not really known. It's Scandinavia. And Americans think of Scandinavia as utopian in many ways. Sexually liberal, free, and that is true to a certain extent, but there are very important differences between the Scandinavian countries as well.
HARDZINSKI: I want to pick up on that notion of comparison, because a lot of your earlier work has focused on Brazil as well. So I'm a little curious as to what are some of the differences in how these issues are viewed, not just between these social welfare states as you mentioned, and capitalist countries like the United States, but also between the Global North and Global South, and perhaps some of these underdeveloped countries.
KULICK: Well, again, that would depend on what issue your discussing. In many ways, this issue of disability and sexuality, it really is a different kind of issue in a place like Scandinavia than it would be in a place like Brazil. Partly because welfare societies actually do provide care, and also people can live in group homes in places like Sweden and Denmark. In a place like Brazil, which is much more like the United States in that there's not a lot of social welfare, it is very different. Many adults with disabilities would be living in a home. And for their development as adults, that is a very different kind of thing. Because living at home with your parents, sort of puts a brake on what you can do. If your parents don't want to do things, you just don't end up doing them. Whereas if you're living in a group home, you have much more independence. Or if you're living independently, as here in the United States you have the movement for independent living, and that is also an incredibly important movement for people with disabilities. So if you're living independently, you can do a lot of stuff. If you're living in a group home, you can also do a lot of stuff. If you're living at home with your parents, it's not going to happen often.
HARDZINSKI: You just kind of touched on that argument for safety for those with disabilities versus the idea of free will, and what the state's role in that. In your book, you discuss what you're calling a capabilities approach, and an aspect of normalization. Can you explain a little bit more about how that plays a role in these debates regarding the rights of sexuality and disabilities?
KULICK: Well, I think that when people talk about sexuality and disability, a very common way of talking about it is in a rights discourse. That is to say that people will say that sexuality is a right. That's a very problematic argument to make, because if sexuality is a right, then what exactly is it a right to? Or more to the point, who exactly is it a right to? So the way we think about it in this book, and I think the more important way of thinking about it is by using what is called the capabilities approach, which looks at justice, social justice in a society, not so much in terms of rights, but in terms of the society's facilitation of individual capabilities. So basically what a person can do. So if a society facilitates a person’s ability to do what they can do, it doesn't give them things. But it's like, 'Can you, if you would like to have a sexual life, let us provide you with education about sexuality. Let us provide you with help to have a sexual life.' And that doesn't mean that we have sex with you. It doesn't mean that a society is going to provide people with sexual partners. But, for example, in Denmark where I worked and lived in group homes, what it means is that people provide education to people with disabilities, and also provides them with help, concrete help. So if somebody wants help, for example, to be able to masturbate, and that seems like it might a rather esoteric kind of problem, but imagine if you can't move your limbs. You can't touch yourself. You can't do it yourself. And there's two ways of dealing with that. As somebody who works for, and with, and loves, and cares for people with disabilities, you can either ignore it and hope it goes away, which it won't. Or you can find ways of actually facilitating sexuality without actually having sex with that person. And that's the sort of... So what that does is it facilitates the capability to understand sexuality and to have a sexual life. And that's the capabilities approach. Just as we think that as part of a life with dignity, part of a life with dignity is the capability to reach out to other people, to love other people, to have a romantic and erotic life. Now that doesn't mean that everybody does it. That doesn't mean that everybody can do it. But part of a just society is to provide the possibilities for people to do that. And so that's really what the capabilities approach. It's not about saying, 'I have the right to sex.' It's about saying that every individual should be provided with the capability to have an erotic life should they choose. Should they want.
HARDZINSKI: How has this research had an impact in these two countries? Has it affected how Denmark and Sweden are approaching this?
KULICK: Well, the research is a comparison between Sweden and Denmark, and what we found is that in Denmark, they have a very robust, and a great system, frankly, for doing this. In Sweden, it's the opposite. In Sweden it's more the situation you find in most other countries in the world, which is that people are afraid of the topic. So their way of dealing with it is that they prevent people with disabilities from having any kind of sexual life. In Sweden, there's a sort of a mantra, and the mantra is from people who work with people with disabilities, the mantra is, 'If I don't do anything, at least I haven't done anything wrong.' In Denmark, it's really the opposite, and that is, 'If I don't do anything then I really have done something wrong, because I'm actually not allowing this person to develop in a way that most adults would like to develop.' So what has happened as a result of the book in Sweden is that the discussion is now being taken up. It's like, 'What can we actually do to do this in a way that doesn't put people in the position... I mean one of the fears, when you talk about sexuality and disability, one of the fears is that if you take it seriously, and if you think that how do we facilitate the possibility of an erotic life for people with significant disabilities? That's to say people who require help. The fear is that I'm going to have to have sex with them. And what we see in Denmark is that's not at all what happens. It's not about having sex with people. It's not about sending people to sex workers. There are many other ways of facilitating sexual education and a sexual life that don't necessitate any of that. And I think that once people realize that, the conversation opens in a way that it isn't open now.
HARDZINSKI: Speaking of opening that conversation, I want to shift and talk about one of your best-known books, and it involves a Brazilian soccer player who is caught with transgender prostitutes. Can you tell me a little bit of background about this story, and how it kind of changed, or may have changed gender meanings across Brazil and other Latin American countries?
KULICK: Well, the book isn't about that. The book that I have written is about transgender prostitutes called travestis in Brazil, and what you're referring to is an article about a scandal that occurred with Ronaldo, who is one of the best-known soccer players in the world. He retired a number of years ago, but anyone who knows anything about soccer will know very well who Ronaldo is. He's one of the most distinguished and awarded soccer players. And in 2008, he'd basically picked up three prostitutes who all turned out to be transgendered prostitutes. And one of them made it known that they were all transgendered prostitutes. So he was mocked, roundly mocked. He denied knowing that they were transgendered prostitutes, which is what every single man who has ever been found out to have been together with a transgender prostitute says. They all say, 'Oh, I didn't know.' He knew. Everybody knows. It's always a lie when they say that. And really what happened when this... Everyone in Brazil was very involved in this case, because Ronaldo is so well-known. And I think that what the case showed us is that there's a, it's a 'don't ask, don't tell' situation. So the sort-of traditional Latin American way of thinking about gender and sexuality is that a man can have sex with another man if he doesn't concern himself at all with the penis of that other man. The other one is a homosexual, but you can still be a man. So the transgender prostitutes with whom I worked, for example, they're born men. They modify their bodies in various ways to look very feminine. They inject silicone. They take hormones. But they're not transsexual in the sense that they want to have a sex reassignment surgery. So they don't want to get rid of their penis. They love their penis. They think it's just fabulous. But they're together with men who are not homosexuals. So they themselves identify as homosexual. Their boyfriends, they say, are heterosexual. And the boyfriends themselves see themselves as heterosexual, even though they're together with somebody who has a penis. That's the traditional Brazilian system. That is now sort-of quaking, largely because of the AIDS period, when different kinds of sexual understandings were really introduced and reinforced in Brazil. Brazilians travel a lot. There's just a lot of movement. So there's kind of a clash, or an eclipsing of one's sexual system by another. And the sexual system that is now coming into really play is that you can have sex with a man, if you're man, without you being a homosexual. And really, historically, that's what happened in our own society. In the beginning of the 1900s, men who had sex with other men weren't homosexual if they penetrated them. And we still have it in the prison system of sexuality. So there's an idea that men in prison who have sex with each other, the only one who is the homosexual is the one who is penetrated. The one who is doing the penetrating doesn't necessarily have to be homosexual. But what this whole case sort-of did in Brazil is that it made Ronaldo, the soccer player, people doubted his masculinity. So I think he probably thought, 'I can have sex with these people, these transgender prostitutes, and I'm still a man.' What he discovered when this was publicized is that people started to say, 'He's a viado,' which in Brazil is a 'faggot.' 'He's a faggot. ' So really, it's one of those places where you see a kind of sexual and gender system quaking and shifting and moving as a sort of tectonic shift going on. And that's not to say that is a shift that, it's not like one will disappear, one of these systems will disappear. I think that they're both going to coexist. But I think Ronaldo was very surprised to learn that people now see him as a queer.
HARDZINSKI: It's fascinating research, and Don Kulick, I appreciate you taking the time to tell us about it on World Views.
KULICK: Thank you very much.
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