Preface

Part of what binds the gay community is an experience known as "coming out," in which a person acknowledges his or her sexual orientation to family and friends. The process of coming out is one that usually occurs over time once an individual develops a comfort level with his or her sexuality (Bernstein, 1995).

Although the process is complicated, it is doubtful that even those who are most understanding can imagine the obstacles of trying to navigate the intricacies of sexual orientation discovery by a person with a developmental disability.  Acknowledging that people with mental retardation are sexual is a new development in the human service field, but one that is still facing pre-Stonewall mentality regarding those who are gay. Although people with mental retardation are given unprecedented freedom to make personal vocational decisions, there is an unfounded expectation that they do not have sexuality—let alone homosexuality.

As antiquated institutions are closed and residents are moved into more mainstream settings, some human rights issues have been inadequately addressed.  Perhaps it is because of an enduring paternalistic attitude that people with mental retardation are childlike and require protection from adult experiences.  Personal biases of support staff and guardian family members also serve to restrict individual freedoms.  With great strides being made in human services, hopefully a new understanding is emerging which recognizes that healthy sexuality is a natural component of being an adult.

The Rainbow Support Group (RSG) is evidence that some people with develop-mental disabilities are gay, lesbian, bisexual, and trans-gender (GLBT).  Among the first of its kind in the nation, the RSG has been meeting since September 1998 at the New Haven Gay & Lesbian Community Center. Participants discuss the same concerns as other gay people, but they do it in a support system that recognizes their unique perspective.

Discussions at the monthly meetings have a surprisingly familiar sound.  Members are concerned with being forced into hetero-sexual social situations, since that is the only available option for them to socialize.  Some members are afraid of being "outed" to their peers and staff, which is understandable since many people with disabilities are not their own legal guardians. They are acutely sensitive to retaliation from staff and family, such as being ostracized from family functions or ridiculed by unsupportive staff.  Transport-ation is a significant barrier to participation in the group, since most people with developmental disabilities do not drive; it is most often the reason for missed meetings.

Members may be reluctant to add another level of stigma by identifying themselves as members of the gay community. However, the primary concerns members describe involve an overwhelming sense of isolation, lack of companionship, and lack of support from staff concerning their sexual orientation. 

The RSG is an appropriate avenue for members to connect with others like themselves and also to connect with the larger New Haven gay community.  So far, members have attended such community center events as holiday parties, movie nights, and gay pride celebrations.

The positive outcomes displayed once an individual enters the group are exciting.  Members quickly develop a sense of ownership and wear rainbow-emblazoned clothing to meetings. Everyone has joined the host community center to receive regular mailings and event discounts.

Supervising staff report that members perform better at work, have fewer behavioral issues, and experience a greater feeling of contentment.  For people with mental retardation, the ability to say the words "gay," "lesbian," "bisexual" and "transgender" in an affirming environment is a cutting-edge breakthrough.

The Group

The RSG has evolved into a support group for gay, lesbian, bisexual, and transgender people with developmental disabilities.  All four components of the modern gay movement are represented—gay men, lesbian women, and people who identify themselves as bisexual and trans-gender.

Transgender is an umbrella term that refers to people who cross-dress, including males who wear feminine clothing and females who wear masculine clothing (Gay & Lesbian Alliance Against Defamation [GLAAD], 2001). It also includes people who are in various stages of having gender reassignment surgery or become trans-sexual (GLAAD, 2001). As an example, the RSG includes a fifty-five-year-old male member who identifies as heterosexual, has a girlfriend, yet has cross-dressed his entire life.

The RSG neither encourages nor discourages relationships between members, but as in any other social group, members are able to develop friendships outside of meetings.  As members become more comfortable with one another over time, they have developed friendships outside of the group.

The RSG meets on the second Monday of each month and always holds meetings at the New Haven Gay & Lesbian Community Center. There are several reasons for meeting at the center. As a focal point for gay life in southern Connecticut, the center hosts dozens of social and support groups, publishes a newsletter, maintains a Web site, and produces many events during the year.

The center offers a pleasant and accepting atmosphere, providing members the opportunity to enjoy the nurturing surroundings.  For some, time spent at the center is their only gay experience.  The center is a clearinghouse for gay literature and periodicals, and has a bulletin board for community postings.

The center is also home to many other groups and activities, which members are free to access on their own. When new members first attend, many display a visible sense of satisfaction, expressing a feeling that, "I've come home.  I've found others who think like me.  I'm not alone."  There are movie nights when current videos are shown on a large screen television, dances, other group parties, and holiday parties.  Through the RSG, the center has become more user-friendly for the primary reason that members have developed their own friends and new reasons to visit the center.

The Issues

If we as a profession believe that people with DD/MR are entitled to make vocational, social, and residential choices, there should also be respect for their decisions for sexually intimate relationships. The Rainbow Support Group has revealed that persons with cognitive disabilities have the intellectual capacity to decipher the intricacies of sexual orientation.

Members who do attend the RSG are able to articulate their feelings and demonstrate that they understand what it means to be part of the sexual minority community.  Members come to the group with their own sets of concerns, but they report an overwhelming sense of isolation and loneliness.  At the very least, participation in the RSG gives members the opportunity to know other people who have similar feelings.

Topics of conversations vary from mundane to personal to explicit perceptions and events.  Just as in any other group, the conversation meanders as the focus moves around the room, but members are always free to speak without censoring their gay perspective. For ninety minutes each month, members can feel liberated, be nurtured by the environment, connect with others like them, and take home literature to carry them through another month.

Successes

The rainbow is a symbol of gay pride and solidarity (Marcus, 1993).  In keeping with the symbol, members named the group during their second meeting to declare their pride as gay people and their solidarity with the gay community.

Among the first of its kind in the nation, the RSG has been deliberately public with its message that some people with DD/MR are gay.  The RSG publishes a newsletter that is regularly mailed to several hundred addresses, holds regular monthly meetings, garners significant media coverage, and serves as a hub for countless calls from around the country. Just by continuing to meet, the RSG is able to counter the stigma associated with mental retardation and sexual orientation.

The RSG is generating real change, literally one person at a time. Many members may have no experiences in their life that delineate their gayness, yet they know they have feelings of same-sex attraction. The RSG provides members an opportunity to at least have a shared experience where they can meet other people and learn about the gay community. By participating in the group, members can develop new friendships, attempt to arrange dates, and increase their chances of finding a partner.  They can learn about appropriate ways to meet others, learn about safe sex, and feel empowered to advocate for their own intimacy needs.

Although it is not a dating service, members in the RSG have had success forming relationships with one another. Two of the group’s lesbian members exchanged e-mail addresses following their first meeting together in February 2001 and by March had declared the start of a relationship. Later that year in November, they moved into their own apartment, supported by a state agency, as an openly lesbian couple. The journey to assist them in their relationship was not without problems, but the same can happen in any relationship.

Other significant outcomes with the group involve several male members and their desire for dating and relationships.  From the start, the men hop scotched from one to another, but in retrospect, obtaining a partner seemed secondary to the activity of dating.  As happens in many dating situations, it seemed they were more excited when they were in pursuit of a partner than after they declared their mutual consent for a relationship.  It was when they were on the cusp of settling into a long-term commitment that the bickering began and they romantically pursued unattainable staff and acquaintances.

Similarly, the group’s cross-dressing transgender member endured tremendously difficult periods before he finally found support for his dream, which was to spend much of his leisure time cross-dressing. He was threatened with blackmail, humiliated, manipulated, condemned, proselytized, and ignored, all for what seemed natural to him.  Here is a man who works, earns his own money, maintains an apartment, and is his own legal guardian, yet his time and desires were not his own. The RSG was a quiet force that assisted him in connecting with support staff who wanted only to listen to him and not try to force him to conform to someone else’s expectations.

What has also surfaced as RSG members speak at conferences around the country is that the human services profession has done little to address the desire of people with DD/MR to have opportunities for intimacy. The RSG has done more than simply advocate for sexual minority people with DDIMR; it has become a catalyst for discussing sexuality of the DD/MR heterosexual majority as well. Sexuality is the elephant in the room, given reliance on government funding and public perception of sexuality as a politically loaded term (Hingsburger,1991).  While many direct care support staff either avoid the topic or are moralistic about sexuality, they also feel frustrated and powerless to assist the people they serve with such an important and deeply private aspect of life (Monat-Haller, 1992).  It is exciting and ground-breaking that the RSG is assisting the disabled community in having a discussion on the rights of all individuals to sexual expression.

The RSG is building a framework for what is surely to come later.  Its success is the ability of members to live open and honest lives.  Sexuality is a natural component of adulthood and to deny someone access to his or her feelings renders that person invisible.  Ultimately, the power of the RSG lies in its self-advocacy and declaration of purpose.

Lessons Learned

The RSG is such a tremendous source of strength for its members and an educational resource for the profession that it seems counter-productive to discuss any of the obstacles to its success.  However, the issues raised here serve as a reminder that triumphs rise from adversity.

As founder and a facilitator of the RSG, my name serves as a flash point not only for family members and staff uncomfortable with GLBT issues but also for members and other clients who are grappling with their own sexual orientation.  The RSG is a member-driven group in which we talk about whatever is on our minds and try to respond if not with cohesion, then with support.  During a particularly difficult period in the group, when we were waiting for a national television feature to air on public broadcasting stations, several family members and staff had a typical reaction to our very public "outing." When gay people come out of the closet, very often their family members have the opposite reaction and go into the closet (Bernstein, 1995).

Some of the members who attend RSG meetings are their own legal guardians and have the legal right to make their own decisions.  Still, that does not preclude concerned family members from getting involved in their decisions.

The RSG is a controversial group because it deals with the subject of sexuality in the DD/MR community, which is taboo.  For example, the father of an RSG member was aware his adult child was attending the group, but took umbrage at some of the publicity surrounding the television feature and the fact his child was prominently featured.

"If you were truly interested in helping them, you would do it quietly and not celebrate [homosexuality]," said this father, suggesting that I had coerced members to appear on television.

As a human services professional obligated to listen to the messages of my clients, my response was that the group was at risk of losing its momentum without publicity in the general community to help normalize the subject. "The best way to make life better for the members is to celebrate who they are," I said.

It is difficult to take an in-between stance when it comes to celebrating who you are.  Can you be a little bit gay?  How do you make a quiet public announcement about a unique group in a local community?  A public message is just that—public—and since there is so much anxiety surrounding the sexuality of people with DD/MR, many people feel that a public dialogue on the subject should be introduced gradually, if at all.

The most courageous person during this episode was the RSG member. At the meeting following the exchange with his parent, the member said to another member (who was also going through a similar experience with family members), "Stick up for your rights. I did."

Statistically, 3 percent of the American population experiences mental retardation (The Arc, 1982). If 10 percent of those 7.5 million Americans are members of the GLBT community, there is much work to do to provide support in the human services profession.  Even if the numbers are only 1 or 2 percent, service providers still need to put aside their personal biases toward sexuality and sexual orientation to assist the people they serve.  So the question becomes, What is the best way to reach those people about the message of the RSG?

There is a dilemma in trying to broadcast the message of a controversial subject.  If the message is too blatant, it offends many conservative stakeholders; but if it is too vague, the message is easily ignored or fails to generate interest. Trying to find the right balance in disseminating information on the RSG has been a source of many of the battles we have faced.

As a unique group, part of the strategy for validating the RSG has been to entrench the group in institutional and professional structures.  Although the media has been one of the legs of support, forging formal and informal links with human services and gay community organizations has also contributed to maintaining a viable group.  Creating a network of contacts has increased the likelihood that the group will be considered for referrals, welcomed at gay events, and invited to professional conferences.  Once again, the approach creates a more visible group, which can challenge the comfort level of even the staunchest supporter.

One of the more proactive administrators at an agency that has consistently demonstrated its support for the RSG and for acknowledging the sexuality of its clients was faced with such a scenario. In preparation for an awards ceremony, I had nominated several individuals and organizations for their support of the RSG.  The award was the Jane Addams Award (Jane Addams was the founder of the social work movement) for institutional courage from the Connecticut Coalition for LGBT Civil Rights—a prestigious gay community organization dedicated to civil rights. The group is modeled after other civil rights organizations such as the National Association for the Advancement of Colored People (NAACP) and the Anti-Defamation League (ADL).

After submitting a lengthy application and sharing copies with key players, the administrator called to say the nomination had breached a confidence and must be rescinded immediately. His primary concerns were that the town where his agency was located was a working-class community in which gay issues were not part of the local dialogue. The board of directors for his agency was also unaware of the quiet support that had been offered.

During a follow-up meeting in which we both had a more relaxed opportunity to explain our actions, the crux of the dilemma was revealed. A new organization needs to generate awareness and credentials as it attempts to build a network. For the administrator, the reaction exemplified the internalized homophobia we all must overcome to fully embrace the message of the RSG.

"Would you have had the same reaction if you were nominated for a Jane Addams Award from the NAACP?  Would you have declined to accept a Jane Addams Award from the ADL?" I asked, without expecting or receiving a reply.

Similarly, at a statewide conference on DD/MR where the RSG was invited to present a seminar, a description of the RSG was sent beforehand for publication in a conference guide. The description was edited, without permission or notification, which created great confusion for some attendees who expected something else once the presentation began.

The submitted description follows:

The RSO provides a safe space for discussion and fellowship among people with developmental disabilities who are gay, lesbian, bisexual, and transgender.  This emerging issue, alone with sexuality and relationships, will be discussed.

The edited description, however, appeared as such:

The RSG provides a safe space for discussion and fellowship among people with developmental disabilities who have alternative lifestyles. This emerging issue, along with sexuality and relationships, will be discussed.

Using words to define one’s own life and describe components of one’s personality is an empowering exercise for people who continue to be treated as invisible. It was ironic that the planners of a conference on self-determination would ignore their own mission and attempt to sanitize the message in the hope it would not offend some of the more conservative attendees.  What occurred in the process was that the presenters, and the very attendees the seminar was designed to reach, were the ones who were deeply offended.

I believe the most powerful tool the gay community can use to effect change is also a personal one, which is to simply come out, tell our stories of growing up, and describe our feelings.  The "closet" is a prison that has been effectively used against us, for anyone that considers his or her sexuality a source of shame (Bernstein, 1995).  The resistance to come out is so powerful that many are unable to challenge what has typically been a lifelong assault.  Because of the injustices I see and my experience every day as an openly gay man, I do not want anyone else who is gay, lesbian, bisexual, or transgender to be told they are anything less than unique and valued and cannot have a life filled with great potential.
 

Future Goals

What I have most learned in this journey to provide a safe haven for GLBT persons with DD/MR is the power of the human spirit.  Members who come to the RSG have endured some of the most inhumane conditions and difficult circumstances, yet their generosity and optimism shines at every meeting. Their insight into complex relationships is sophisticated beyond expectations. Their desire to build a sense of community is real as they respond to their own inner voices.

The RSG stands ready to serve as a model for human services professionals in other states and regions to create similar support groups for their clients. Already, the RSG has provided inspiration for other regions, Massachusetts and Minnesota, for example, as more human services staff recognizes diversity within the DD/MR community.  The best course of action for the RSG is to simply continue doing what it has done successfully since September 1998--providing a safe and inviting environment for GLBT people with DD/MR.

During a recent conversation, a key administrator at one member’s agency called to voice a concern that a frequent topic at RSG monthly meetings encouraged unrealistic expectations for this client.  Since the client lives in an intensively supervised residential setting, it would be virtually impossible to allow any opportunities for intimacy or a close personal relationship.
 

"I can respect your position and will try to be more sensitive to your concerns," I replied, trying to remain cognizant that the comment came from an ally and not an adversary.  I then added a caveat: "Having quality of life is more than just having a full belly and a warm place to sleep. Aren’t we all looking for relationships and the opportunity to share our life with a partner?"

So what if a person lives under constant supervision?  Is it not our obligation, as human services professionals, to ensure that people with DD/MR have the same opportunities to realize their dreams in life? Just as heterosexuals do not have a monopoly on sexuality, the potential for having a relationship is not limited to intellectual privilege—it is part of what makes us human.  What the RSG has accomplished and will hopefully continue to illuminate is the understanding that people with DD/MR are entitled to a whole life experience, including discovering and enjoying their sexuality.