Loneliness and Its Opposite is a great book. It’s a comparative study of sexuality for disabled people in Denmark and Sweden. It’s one of the better queer theory type books I’ve read, in general. You can tell it’s going to be amazing from the first chapter:
Before Branting’s talk, Don, like perhaps most people, had never given much thought to the sexual desires of people with significant disabilities. To the extent that he had ever thought about the topic at all, he imagined that a disability as severe as neck-down paralysis somehow disqualified a person from sexuality. It eliminated erotic feelings; it extinguished sexual desires.
But hearing Branting talk about the anguish of the anonymous paralyzed woman in the wheelchair who reached orgasm when she was lifted and who was then denied that life-affirming pleasure by men who feared they would be accused of sexual assault, made Don realize that there was a whole population of people whose erotic lives were actively being suppressed by the same individuals the welfare state employed to care for them. It also made him realize that the sexuality of a woman such as the one who had come to Branting for counseling was far queerer and far more disturbing to some kind of sexual-political hierarchy than almost anything imagined by the Swedish journalists and queer theorists who spent their time discussing gender fluidity in the postmodern theater, or the Eurovision song contest.
They explain very clearly why this topic is SRS BSNS:
“What are they complaining about?” is a not-uncommon riposte to anyone who raises the issue of sexuality in Sweden. “Lots of people don’t have sex. What kind of special treatment do they want?” In responses like that, sexual access is understood to mean “special sexual favors” or “special sexual rights.” And in that sense, it also rankles many people with disabilities, who object to what they see as the patronizing implication that they are so undesirable, or incapable, that they require charitable interventions in order to be able to have a sexual life.
In fact, many people with significant disabilities do require special interventions to be able to have a sexual life. But those interventions are of a very different nature from simply making it easier for them to get out more and hoping that others will find them fetching. The interventions we discuss in this book are not about demanding the right or the access to sex so much as they are about facilitating disabled individuals’ capability to engage in a range of social and emotional relations with other people. These are interventions that show us that the critical question when thinking about sexuality and disability is not “Is sex a right?” or “Sexual access to what (or for whom)?” It is “What can we do to help people develop their capability for forming attachments to other people, including attachments that involve sexual pleasure and love?”
Phrased like that, the question doesn’t elicit a yes/no answer; it isn’t something a tabloid newspaper can ask its readers to vote on. It isn’t even necessarily about people with disabilities. It is a general question, one that pertains to everybody, and that addresses everybody. But posed in the context of people with disabilities, it invites a considered engagement with the lives of individuals who need particular kinds of assistance to be able to live a life of dignity.
Considered engagement is the key here.
On the contrary, sex in relation to people with a disability is almost inevitably portrayed as a problem and a threat. At best, the problem is managed–through unrelenting surveillance or by detailed instructions about locking doors and making sure that stains stay off sheets. At worst, it is handled by pinching an aroused disabled man’s penis with two fingers and felling it with the “penis-killer grip.”
Even when Swedish commentators attempt to extend their own perspectives to imagine what life must be like for a person with cerebral palsy or Down syndrome, they usually get no further than themselves. They achieve only what philosopher Iris Marion Young has termed “symmetrical reciprocity”-that is, they put themselves, with their background, knowledge, experience, and privilege into what they suppose is the position of another, and they imagine that such a substitution adequately captures the perspective of that other or those others. This is the kind of narcissistic substitution that results in comments like the antiprostitution activist Louse Eek’s declaration that disabled people who want to meet others “should go out and do so like everyone else does.”…
The belief that one can put oneself in another’s situation and imagine the world from his or her point of view is one of the reasons why sexually active individuals feel they are entitled to chastise disabled people who dare to suggest that sex might be a human right.
Iris Young highlighted the dynamics of “symmetrical reciprocity” in order to draw attention to the way fantasies of identification and similarity–of being able to put oneself in the place of another–efface difference and disguise relations of power. She points out that while trying to imagine the perspective of another is helpful in carrying one beyond one’s own immediate standpoint, it is a mistake to think that we can ever capture or occupy the standpoint of the other person. “When people obey the injunction to put themselves in the position of others,” she writes, “they too often put themselves, with their own particular experiences and privileges in the positions they see the others being in.” Hence, “when privileged people put themselves in the position of those who are less privileged, the assumptions derived from their privilege often allow them unknowingly to misrepresent the other’s situation.”
Young goes on to describe how this kind of misrepresentation doesn’t facilitate communication or understanding–instead, it actually impedes it:
If you think you already know how the other people feel and judge because you have imaginatively represented their perspective to yourself, then you may not listen to their expression of their perspective very openly. If you think you can look at thing from their point of view, then you may avoid the sometimes arduous and painful process in which they confront you with your prejudices, fantasies and understandings about them, which you have because of your point of view.
This is a prostitute talking about clients with Down syndrome:
“They were all really happy,” Camille continued, “all three of the ones that came. And they wanted me to pet them, and they pet me, like this”–Camille leaned toward Don and slapped him roughly on the shoulder and then stroked his arm clumsily, almost pulling on it. “Hard, like that. As though they didn’t really know how to do it. And afterward I thought about it, and I think about it still today–can it be that they’d never been properly caressed?”
I mean, I don’t imagine most normal people have spent much time imagining what it’s like for your life to be this kind of Notes From Underground misery:
Before he arrives at a klinik with the person he is assisting, Søren will have spoken to the appointment girl and made it clear that the person for whom he is calling has an intellectual disability. On the agreed-upon day, Søren then accompanies the person he is helping to the klinik, explains anything that needs to be explained, such as the sex menu, and then behaves like the helper mentioned earlier. “I sit in the waiting room, and they usually offer me a cup of coffee,” he told Don. “I sit there and wait, and afterward I ask if it was good or bad or what, and I ask what the person liked about the experience.
“I’ve had some amazing experiences in those situations” he added. One he felt was particularly notable concerned a young man with Asperger’s syndrome. This man had difficulty understanding social boundaries, and one evening he approached a prostitute working the street and did or said something she found offensive or abusive. A man who was looking out for the woman came to her assistance and punched the man with Asperger’s, leaving him with a black eye. As a result of this incident, the man with Asperger’s became obsessed with getting revenge. He happened to be an engineer, Søren said, and he wanted to make and then detonate small bombs in all the brothels in Copenhagen. Søren, who had been called in as a consultant by a psychologist at an autism center, told the man that he was impressed by how much thought he had put into his plan. But he suggested that maybe there was another way he could satisfy his desire for a proper response to the assault.
“And we talked and we reached the conclusion that what this guy actually wanted was to have sex,” Søren said. He told the man that he would help him, but only if he agreed to behave himself and go to a proper brothel, not to a street prostitute. Søren also told the man that he needed to write a small report afterward indicating that he had behaved properly. “I told him I didn’t want to know the details,” Søren said, “but I wanted both him and the woman to write that he had behaved well.” If the man refused, Søren would not work with him anymore.
The man agreed, Søren said, but he told him aggressively that he wanted a woman who would pee and defecate on him. An experienced and grizzled sexual advisor, Søren was unfazed. “I don’t care what you do,” he told the man, who, he suspected, was just trying to provoke him. “As long as there is no coercion or force involved, do what you want. But I want to see the report afterward.”
“And so this is what happened. He comes out of the room at the klinik, and he gives me a piece of paper. And there I read that what he did is lay his head on the woman’s stomach and have her stroke his forehead. That’s all he wanted. That’s all he needed. That’s what he needed help in achieving.”
It’s important to note that there are no Good Samaritan prostitutes that just want to make life better for disabled people by having sex with them. Even this woman’s experience doesn’t convince me that prostitution is a good idea:
I talked to my mother about how I had been feeling pretty bad about myself for a long time. You know, big mood swings. One day I’d cry over the stupidest things and the next day I’d be completely hysterical. I didn’t have any kind of control over my moods. I’m the kind of person who reflects about things a lot, but I didn’t know what the problem was.
So I sat down and thought, “Okay, something is going on with me now that hasn’t happened before. What is going on, and why?” You know? And I thought about how I was twenty-seven years old. And I had never had a partner or a sexual experience. Most people have their sexual debut long before they are twenty-seven. And so I thought, “Well, of course. I’m having all these mood swings because my body and my psyche are mature enough for it, but I hadn’t yet had it.”
So I thought, “What can I do?” I’ve always been against, you know, going out on the town and coming back with just anyone. I didn’t want to do that. I need to feel secure and all that. So it was important to me to go onto the Internet and find someone who was a professional and who did it because he wanted to. And it was important for me to, like, pay for the service, so that I wouldn’t be embarrassed that there were some things that I maybe wasn’t able to do or that I needed to be taught how to do certain things.
Isn’t that sad? She has no realistic expectation that normal people could just be nice to her during sex.
There are interesting assumption-challenging passages:
As a normative ideal for how people ought to relate to one another, the “Swedish theory of love” authorizes some kinds of relationships and devalues and opposes others. Those it values are relationships between equally independent individuals: “Authentic relationships of love and friendship,” Berggren and Trägårdh explain, “are only possible between individuals who do not depend on each other and/or stand in unequal power relationships.” The unstated but unavoidable corollary of this understanding of love and friendship is that relationships between individuals who depend on each other and/or who stand in unequal power relationships, whenever they exist, are regarded as undesirable, objectionable, and inauthentic.
That is the catch.
A moral philosophy of friendship and love that is able to accord authenticity and value only to relationships between people who do not depend on one another and who are in equal power relationships puts significantly disabled people like the ones we have discussed in this book in a difficult position. From the perspective of the “Swedish theory of love,” any erotic relationships that significantly disabled people have or want to have will not only seem undesirable and unacceptable; in an important sense, such relationships will also be fundamentally incomprehensible. They make no sense…
Statist individualism and the “Swedish theory of love” that grounds it are in many ways progressive. The emphasis on individualism and the redistributive channels that have been put in place to ensure an individual’s independence in relation to everything except the state have facilitated significant advances in gender equality, labor rights, and children’s rights–advances for which Sweden is justly renowned and admired across the globe.
But by figuring dependency on other people primarily as a sign of subordination, and by regarding power differentials between individuals who care for each other as something objectionable and infringing, the “Swedish theory of love” has trouble recognizing love desired or expressed by women and men with significant disabilities. Such love, from that viewpoint, can only really ever be misrecognized–as misguided, mistaken, impossible, or wrong.
Everyone depends on other people. Taking the idea too far would basically make heterosexual relationships impermissible as long as the patriarchy prevails. A person doesn’t necessarily control how much power they have. It’s more that there’s an ethical obligation to give unconditionally, so that the more powerful person isn’t coercing by withholding contingent on the other person’s behavior.
On the hypocrisy of language police:
What we will present in this book, though, is the example of a country where wildly politically incorrect language about disability coexists with policies and practices that are both politically radical (for what they mean for the rights of people with disabilities as citizens) and ethically progressive (for what they imply about how disabled and nondisabled people might imagine and engage with one another). This contrasts starkly with Denmark’s neighbor, Sweden. There, language about disability is constantly monitored and uncompromisingly judged. But policies and practices relating to the sexual lives of people with disabilities are politically retrogressive and ethically arrested. Significantly disabled individuals’ access to sex is actively blocked–by the very same people who would be the first to correct you if you said “handicap” instead of “disability.”