DIFFERENCES, SEX AND POWER:
INTERVIEW WITH DAVE HINGSBURGER
(with Helen Behar)

[Dave Hingsburger is a therapist, educator, lecturer and author who actively campaigns for the sexual rights of people with developmental disabilities. He lives in Quebec.]

[Helen Behar is a Bay Area social worker working with people with developmental disabilities.]



Steinberg: I got interested in the issues around sex, disability, and institutions because it seemed like an excellent lens through which to see some of our society's attitudes about sex. In your talk this morning, you seemed to be emphasizing how the issue was less about disability than it was about sex.

Hingsburger: I think it's about two things: sex and power. The big pink elephant in the room of human services is power. It's one thing to have attitudes about sexuality and it's another thing to have an attitude plus power over the sexuality of another person.

There was a woman with a disability who was pregnant and who was forced to undergo [an abortion], probably without consent. This is outrageous and barbaric. The whole history of social work regarding sexuality and disability has been replete with these kinds of things.

It was not uncommon, for example, in the institutions, if a man or a woman were caught masturbating, that they would spend the rest of their lives with their hands forced into boxing gloves, tied tight, and then tied to the side of the bed. They would have to sleep like that for the rest of their lives because they would be considered chronic masturbators, until the deinstitutionalization movement came along. That's when a lot of this stuff was discovered. The harsh attitude, coupled with the power, led to a lot of abuses.

Steinberg: What are the crunch issues, in terms of how staffs of institutions, or people who run group homes, or parents of disabled people, enforce their sexual attitudes through the use of power?

Hingsburger: Whenever I talk about sexuality and disability with people outside this field, the issue that always comes up is the issue of parenting: What if they have a baby like themselves? There seems to be this incredible fear that if developmentally disabled people engage in sexual behavior, one of them is going to get pregnant and the child is going to have a disability, and oh my god what a tragedy.

There are a number of things I look at when dealing with that kind of attitude. First, it's not true. People with developmental disabilities are no more likely to have a disabled child than anybody else. And there's a real bias and bigotry hidden behind even asking that question. There's the whole idea that maybe, if we could just stop them fucking, then there won't be any more of them and we won't have to deal with them and society will be better off. It's like the old Nazi eugenics movement rearing its head again.

Behar: You made a point that you believe that many social workers simply do not like disabled people.

Hingsburger: Exactly. I don't think that sexuality and disability is controversial because of genitals. I don't even think it's controversial so much because of pregnancy. The major reason it's controversial is that it would force a massive reevaluation of who disabled people are.

All of what has been done to disabled people has been done on the premise that they're not the same as the rest of us. There are doctors who believe that developmentally disabled people don't feel pain the same way we do. There are articles in journals entitled, "Can Downs Syndrome Women Feel Depressed?" They're asking whether disabled people can feel physically and emotionally in the same way that you and I do.

So here we happy little sex educators come along and we say that this person has a heart that's equal to anybody else's heart, the same breadth of emotion and feeling as every other person. If that's true then we have for decades caged a population who felt loss, who felt abandonment, who felt lonely, who felt deserted. It means they felt every electric shock that went against their skin. It means they felt every hour they were put into isolation. It means they felt everything that was ever done to them. And I think there's this massive feeling of "Oh my god."

Most parents put their kids in institutions because we professionals told them to. We told them that if they loved their child they should put him in an institution, and they followed our advice. They put their kids in these big facilities because we told them it was best. We told them their kids were vegetables, that they wouldn't feel, and all that stuff. For parents to come to terms with their children being adult sexual beings with a heart that's capable of love means rewriting the whole past and reevaluating all the decisions that were made.

Steinberg: What are the specific things about disabled people being sexual that is so difficult for people?

Hingsburger: Well, as I've said, pregnancy is definitely a big one -- the idea that they might have a "bad" baby. There's also the whole idea that developmentally disabled people are perpetual children, that they don't become adults. So their sexuality is something that people certainly aren't expecting. The whole system is predicated on the belief that these are happy little people who should live their entire lives as good little saintly angels and then die. So it's a challenge to have folks with disabilities who are pressing to be able to have relationships.

Steinberg: People don't want sex to sully their innocence.

Hingsburger: That's exactly right. It's the idea of the holy innocent. I remember a movie -- I can't remember what it was called now -- where in the end there was only one sinless person who could save society. Of course he had Downs Syndrome.

But there's more. This is a news story from Rio de Janeiro that was in the Montreal Gazette.

"A Brazilian paraplegic says a Roman Catholic bishop rejected his marriage application because... [he said] 'you are paraplegic and therefore impotent.' [The paraplegic's fiancé] said, 'He has been confined to a wheelchair for 15 years. [The bishop] is worried about what goes on in the marriage bed, but for me the bed is a place for love and happiness.' The couple plan to go ahead with their wedding in another church."

So there are religious issues also, the fundamentalist Christian belief that disabled people are products of parental sin. There are various religions that will not allow people with disabilities to take communion because they're not whole people. There are religions that won't allow them to marry. The prejudice runs pretty deep.

Steinberg: I have some notion that people who are developmentally disabled, who are not as effectively socialized as the rest of us, may do sex differently because they're unaware of all these codes about how people are supposed to do sex. You're supposed to be married; you're supposed to be heterosexual; you're supposed to be private; you're supposed to be nice and loving and gentle and so on. I think people get nervous about anybody who has sex in unsanctioned ways.

Behar: I have known people who are cognitively disabled who are constant masturbators. They are, I believe, an embarrassment because this is unsocialized sexual behavior. We are looking in the mirror: This is what would happen to us if we ever had a temperature of 106°, or had a severe head injury, or whatever.

Hingsburger: They're socially unacceptable people wanting to engage in socially unacceptable behavior. Even if they do it in a socially acceptable way, those other two unacceptables make it impossible. Most of the folks I work with who have formed relationships have formed very traditional relationships.

In our clinic in the last 15 years, we've supported several couples who are married. Just last year we broke through one barrier and we are now supporting a developmentally handicapped gay couple. We're moving in that direction, but it's been a hell of a fight.

I just met a couple in Flagstaff, Arizona, a lesbian couple who are Navajo, who are out and active sexually and accepted by their community. To me, that's a sign of hope. Fifteen years ago they might have been killed.

Behar: Care providers raise the liability issue to prevent residents from being sexual, but I suspect it's often a cop out, that providers just hide behind that issue.

Hingsburger: It sure is. Why do non-disabled people have the right to make mistakes, but people with disabilities do not? Whenever anything happens to a person with a disability, it's always attributed to the disability. This is where liability gets into it.

If a person with a disability gets hit by a car, everybody goes, "How can you let those retarded people out alone without supervision?" But people without disabilities get hit by cars all the time. That's something that just happens to human beings. But we don't accept that. We say somebody's going to be responsible for you for the rest of your life. That's hell; that's caging somebody.

Sex is dangerous so let's pass a policy to stop people from being sexual. That's absurd! The whole issue of sexual victimization is a power issue not a sex issue. We should be writing policy about the power of staff. But no, we blame the disability which simply doesn't make sense.

We know that 80% of developmentally disabled women are sexually molested or raped by age 18, and that 90% of the people doing that are staff. For men the statistics range from 30% to 70%.

Steinberg: So there is real risk.

Hingsburger: Sure there is, but to say the risk is because of the disability is blaming the victim. If you're a woman, you're way more likely to get raped than I am, but for me to say you're raped because you're a woman would be absurd!

People are abused because there are abusers out there. We pass policies limiting the behavior of people with disabilities instead of passing policies limiting the power of staff.

When you've got the kind of power over another human being that staff have over people with disabilities, it corrodes your soul. Every time I work with a new person with a disability, I have got to learn to peel away that idea that I know better than them what's good for them, and allow myself to see this person as a real human being. That's the biggest challenge, and the more the disability, the greater the challenge.