Comes Naturally #45 (May 4, 1996):
'Touch' Photos at Good Vibes; Respecting the Sexual Needs of the Developmentally Disabled

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Spectator Magazine - May 4, 1996
(c) David Steinberg

"Touch" Photos at Good Vibes; Respecting the Sexual Needs of the Developmentally Disabled

Victoria Heilweil's "Touch" Photographs at Good Vibes/Berkeley

"Touch," a collection of Victoria Heilweil's gentle, subtle, and carefully crafted color photographs, is currently on exhibit at Good Vibrations' Berkeley store. Heilweil's photographs are conscious attempts to demonstrate what happens when the person in the role of observer/photographer shifts from male to female, and when the woman's role shifts from being the receptor of the sexual gaze to being its initiator.

"In creating these images," says Heilweil, "I overturn the role culture assigns to me as a woman; to be passive, feminine, someone who's sexuality dares not to be open and aggressive. I look where I want to.... [I am] a heterosexual female in the role of possessor of desire."

While the desire Heilweil brings to her photography is hardly aggressive, it is quite distinctively feminine -- almost traditionally so -- which is both a limitation of her perspective and what makes her work interesting. So much erotic and sexual photography by women photographers is male-like in its intent and its tone. What Heilweil accurately describes as the transgressive nature of a woman seizing the gaze seems to exclude all but those women whose sexual point of view turns out to be close to that of their male counterparts. Not so Heilweil, and her representations embody a feminine sexual sensibility that rarely makes the leap to public display.

The exhibit is available for viewing at Good Vibrations (2504 San Pablo Avenue, Berkeley) from 11 a.m. to 7 p.m. every day, through June 30.

A Conference On Sex and the Developmentally Disabled

"We hold that every person with special developmental needs has the right to achieve his or her maximum potential on the continuum of human social and sexual maturity. Social and sexual development begins in infancy and continues throughout life.... All people have a right to dignity, respect and privacy; to opportunities to develop socially and sexually; to learn from appropriate sexual expression; to form loving relationships; to be free from assault and exploitation.... Policies, procedures, or legal competency status should not be used to prohibit or deny these basic rights.... The standards for sexual expression for people with developmental disabilities should reflect the range of behaviors accepted by members of the community."

So reads the statement of purpose of The Committee on Sexuality Advocating for Persons with Developmental Disabilities, whose 19th Annual Symposium -- "Agreement, Consent and Sexuality" -- I recently attended.

The Committee on Sexuality was formed in San Francisco in 1974, to bring together professional counselors and social workers, parents, and disabled people themselves in order to focus attention on the traditionally neglected and ignored sexual needs and rights of developmentally disabled people.

I became interested in the issue of sex and the developmentally disabled because my partner is a social worker who has been working for some time with disabled people. Listening to her stories of how the sexual needs and behaviors of developmentally disabled people are disregarded, disrespected, and generally mismanaged -- whether in large institutions, small group homes, or individual living circumstances -- I found myself face to face with the social oppression of yet another group of sexual outcasts. The ways that most institutions, social work programs, and families negatively respond to the sexual expressions and desires of disabled people provides yet another vivid example that lays bare the basic antisexualism that seems to infect every level of society. I was also interested in the often unconventional sexual activity among this group of people -- people who, because of their disability, have the blessing of not having swallowed hook, line and sinker the whole range of social-sexual norms that most of the rest of us accept without question.

"Developmentally disabled" is the term used by professionals to refer to people whose emotional and mental development has been impeded for one reason or another. It includes people who many refer to as "mentally retarded" (a phrase considered demeaning and derogatory by most in the community), as well as people with other developmental problems, including autism and cerebral palsy. For many decades, most DD people have been conserved to large state-run institutions, such as Agnews Developmental Center in San Jose or Sonoma Development Center in Sonoma. As a result of recent reforms in response to widespread abuse and neglect of DD people in these institutions, most DD people in California are now in the process of being relocated from these institutions to smaller, privately-run group and individual homes. Whether in large institutions or in smaller facilities, however, the disrespect, neglect, and general mismanagement of the sexual needs and desires of DD people has been nothing short of appalling.

That the sexual existence of developmentally disabled people has been denied and ignored so completely is hardly surprising, given the way that this society trivializes sex and how narrowly and exclusively it considers who is sexy and sexual. To begin with, sex in our culture is seen not as a necessary and essential part of whole human existence, but as an addendum, a perk -- something that's nice to have in one's life if possible, but also something that people should certainly be able to do without if and when necessary. From this point of view, of course, all people in institutional settings -- whether they be people who are developmentally disabled, people who are hospitalized for long periods of time for physical or mental illnesses, people who are in nursing homes, or people in prisons -- are assumed to be fundamentally asexual. Historically speaking, little consideration has been given to the sexual needs of people in institutional circumstances, and little thought has been given to providing opportunities for institutionalized people to express themselves sexually in an ongoing and meaningful way. The simple reality that it is fundamentally unhealthy and crazy-making for any human being to shut down sexually for long periods of time is completely ignored.

People in institutions are deprived of their privacy and thus their sexuality as a matter of course. And, among the developmentally disabled, a second antisexual bias reinforces this basic institutional neglect of sexual needs, since DD people are generally presumed to be even more unsexual than other people because they are for the most part far from attractive according to the general aesthetics of the culture. They are, as Dave Hingsburger, keynote speaker at the Committee on Sexuality conference, pointed out, "outside the box" of people seen by this culture as sexually viable.

Hingsburger, a delightfully bawdy, insightful, and entertaining advocate for sex for the developmentally disabled, delivered the opening keynote address, "Sex in a Box: Locking Out Those Who Have Been Devalued," at the Reno conference. In a style reminiscent of Robin Williams, Hingsburger mixed rapid-fire delivery, humor, and unabashedly ribald tales with deep insight, wisdom, and a decidedly radical perspective, both with regard to the real sexuality of DD people and the harshly antisexual attitudes of most of the professionals who are theoretically there to serve their needs.

"How many people made money gambling last night?" Hingsburger asked the assembled conferees, warming up his audience before getting into the meat of his talk. A number of hands shot up.

"And how many people went to the sex shows?" he asked more pointedly. No hands. "No one?" he asked disbelievingly, adding with pointed sarcasm: "Oh no, not us. We're just clinically interested in sex."

Hingsburger, a man who weighs 250 pounds if he weighs an ounce, is well aware of what it means to be outside the community of people judged by society as being properly sexual beings. In his talk, he broke down the sexual outcasts into four groups, ignoring for the moment such basic issues as specific sexual preferences of sexual orientation. Hingsburger's four groups that are outside the realm of Us (the people who simply get to be sexual beings) are these: those who are excluded for being "unattractive"; those who are excluded for their lack of ability to be sexual (including many DD people); those who are excluded for being what he calls "age-above," that is, too old to be interested in sex; and those who are excluded for being "age-below," or too young to be interested in sex. Thus it is standard practice among people who administer nursing homes to assume that their clients are generally "past the need for any of that sex stuff." "Society loves to talk about 'dirty old men' and 'lecherous old women'," notes Hingsburger, "meaning simply people who have chosen to live out their lives as sexual beings."

Similarly, Hingsburger observes, society chooses to deny the sexuality of people it considers too young to be interested in sex fearing, for example, that "sex education will sully the innocence of youth."

As for fat people, Hingsburger comments pointedly that in this society "if you look a certain way you're assumed to not be a sexual being." Expressing his own attitude without hesitation, Hingsburger affirms straightforwardly that "if you can reach it you can talk about it, and if you can talk about it you can do it."

The fourth group of sexual exiles, those considered unsexual because of lack of ability, includes most specifically the developmentally disabled. As Hingsburger points out that disabled people have consistently been stifled and neglected sexually, and then punished severely when their actions show them to be the sexual people they truly are. While the days of using cattle prods as aversion therapy to get DD people to stop masturbating or being sexual with each other may be largely over, horror tales of institutional responses to DD sexual behavior are not hard to find. At Agnews Developmental Center in San Jose, a room that had been specifically created as a place for residents to go to be sexual was being used instead as a place to store linens. Hingsburger tells the story of one individual who was caught masturbating and whose hands were subsequently tied to the rails of his bed every night.

DD people in institutions who fall in love or develop deep emotional attachments for each other are often separated from each other to keep them from being sexual, or may be moved from one institutional setting to another without respect for the importance of their relationships. Forming any sort of emotional attachment therefore becomes highly risky for disabled people. This, of course, has behavioral consequences, as does the denial of any form of sexual release. Despite the fact that rages and aggressive behavior, as well as much sensation-producing selfinjurious behavior, may well be the consequence of relational and sexual frustration, institutions generally continue policies that discourage both relationships and sexual expression of clients.

In addition, according to Hingsburger, most DD people are denied any sexual education until they are in their 40s, and are thus left on their own to try to understand the physical and emotional realities of their sexual feelings and experiences. Remembering aloud, with typical candor, his own first ejaculation ("oh my God, there's pus coming out of my penis!"), Hingsburger notes how terrifying sexual experience can be in an informational vacuum.

More offensive and damaging than sexual neglect, however, is the distaste and loathing that colors the response DD people receive when they express themselves sexually. Hingsburger attributes this mostly strongly to the need of professionals to conceive of DD people as being fundamentally different from the rest of us, in order to justify the many inhumane ways that DD people are treated.

"All of the stuff that has been done to disabled people has been done on the premise that they're not the same as the rest of us," says Hingsburger. "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 want to say that this person has a heart that's equal to anybody else's heart and that they have the same breadth of emotion and feeling as every other person. If that's true that means that we 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 that they felt every hour that they were put into isolation. It means that they felt everything that was ever done to them."

The issues raised in considering the sexual rights and desires of developmentally disabled people go right to the heart of the sexual culture and mythology of the society as a whole. In workshops designed for families of DD people and for the people who run the group homes in which many of them now live, the antisexual biases of care providers often mask as concern for the welfare of the DD people themselves. DD people, providers correctly note, are especially susceptible to being abused by others. They are also more likely than other adults to contract sexually transmitted diseases and to become pregnant. By shielding them from sexual interaction, providers argue, they are only protecting them from danger and from harm.

It is only when educators and advocates push these providers to be creative in finding safe, socially acceptable ways for DD people to include fuller sexual and emotional expression in their lives that they underlying antisexual attitudes become apparent. It is through work of advocates like the Committee on Sexuality, and a growing number of individual social workers committed to both a client-centered attitude and to the importance of sex in people's lives, that the implicit antisexual perspective on DD people is being increasingly challenged.

Perry Samowitz, a sex educator and sex counselor who is Director of Education and Training at the Young Adult Institute in New York City, was another keynote speaker at the Reno conference. Samowitz addressed issues raised by New York State's highly restrictive (but hardly atypical) policy with regard to what constitutes informed sexual consent among DD individuals.

The State of New York requires that before any individual in a group home is allowed to engage in sexual activity, the staff of that home must specifically certify that the person is capable of giving informed sexual consent. Theoretically this is to protect DD individuals from being taken advantage of sexually. On the other hand, as Samowitz points out, since many DD people have limited ability to express themselves verbally, and since informed consent traditionally means being able to verbalize both consent and an understanding of the issues involved in giving consent, the consequence of this required certification has been that most DD people have been deemed incapable of informed consent and therefore denied any institutional support for their sexual expression.

Samowitz's presentation of "An Inclusionary Standard for Sexual Consent" shows how a sex-affirming perspective from professionals can bring about the facilitation of sexual possibility for clients. That his approach is so unusual shows how rarely professionals come down on the side of encouraging sex for disabled individuals.

What Samowitz has devised is a process for determining informed consent that meets New York State's requirements with regard to informed consent, while also making it possible for his agency to certify nearly all of its clients as capable of that consent. He has done this by defining consent issues in terms of the real experience and perspective of largely non-verbal individuals and thus devising non-verbal standards for expression of that consent. Under Samowitz's guidelines, informed sexual consent -- "the ability of the person to understand the information/knowledge necessary to make a voluntary decision that is free from coercion" -- can be ascertained not only verbally, but also non-verbally by an individual "demonstrating through his or her behavior an understanding of acceptable behavior within the community in which the individual resides." They can also "show an ability to say no when they so desire either... verbally or by body language, such as gently pushing the other person away, indicating that they want or need to get out, stop the behavior, or leave."

While, under Samowitz's guidelines, the potential for physical and emotional harm to clients is carefully taken into consideration, the likelihood of harm is also considered, so that remote possibilities of harm are evaluated differently from likely harm. Most radically, "the harm caused by separating willing, responsible partners must be taken into consideration" as well as the harm that might come about from allowing partners to stay together. This sex-positive approach straightforwardly asserts that the lack of opportunity to be sexual can be significantly harmful to individuals, as well as the opportunity to be sexual. From this remarkably sensible perspective, protecting clients from sexual damage requires protecting them from unwanted pressure not to be sexual as much as it requires protecting them from unwanted pressure to be sexual.

Slowly, through the work of groups like the Committee on Sexuality and individual social workers and DD client advocates, traditionally antisexual attitudes and assumptions are being challenged. In some cases, positive steps are being taken not only to allow DD individuals more possibility to be sexual, but to help them learn how to find sexual satisfaction, both alone and with partners. Many of these individuals, after all, are so severely impaired that they may have sexual feeling in their bodies, but not know how to satisfy those feelings. Who will, for example, teach frustrated DD people how to masturbate to climax, how to touch themselves effectively, how to use a vibrator? Sensitive caregivers who might like to demonstrate masturbatory techniques run the risk of being seen as abusive or becoming the object of sexual fixation by their clients. Using sexual surrogates would make sense, but this raises difficult policy issues, even for those institutions that have a genuine desire to support the sexuality of their clients. Hand Made Love, Dave Hingsburger's instructional video that provides instruction in masturbation and is specifically oriented to the needs and abilities of DD individuals, cuts new ground in serving the sex educational needs of this community.

While the sexual needs of people with developmental disabilities may be different in some ways from those of the rest of us, the underlying issues of taking sex seriously and respecting its importance in a basically sex-fearing culture, is the same for all of us. If these issues are of interest to you, or if you know developmentally disabled people who might benefit from this work and these resources, keep your eyes open for next spring's conference of the Committee on Sexuality, which will be held in Oakland. For information, or to get on the Committee's mailing list, contact Kathleen Lee, Symposium Coordinator, 447 N. Tenth Street, San Jose, CA 95112; (408) 451-7699, or write to The Committee on Sexuality, 21450 Bear Creek Road, Los Gatos, CA 95030.

[This column was originally published in Spectator Magazine (see If you would like to receive Comes Naturally columns, and other writing by David Steinberg, regularly via email, send your name and email address to David at Columns are sent as blind carbon copies, meaning that no one will have access to your name or email address.]

David Steinberg
P.O. Box 2992
Santa Cruz, CA 95063
(831) 426-7082
(831) 425-8825 (FAX)

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