“Not only do you have a disability and you’re deemed to have no sexual relationship potential whatsoever, if you happen to be gay or lesbian you have no voice. You are so far down the scale of marginalization it’s beyond belief. It’s all about the invisibility of it.”
- -Jerry McNamara, CEO of FRANS (Ozturk,2012)
For people labeled with intellectual and developmental disability (ID), the topic of sexuality can be viewed as both hotly contested and largely ignored. Many myths persist about people with intellectual disability being perpetual innocents, depraved maniacs, or sex offenders. For those with an ID who also identify as homo-, bi-, or transsexual (heretofore referred to under the umbrella term queer), this social stigma regarding expression is doubly burdensome. As the acknowledgement of people with ID as autonomous sexual beings is relatively new, the smaller subset of research and focus on those with queer identities is sparse at best (Abbott, 2007, p.28). In the face of a dearth of information, one must generalize and combine perspectives from the ID sexuality and the queer studies literature to estimate the impact of this dual minority status on those queer identified people with ID.
Intersectionality is not in the current discussion about disability services, which is a form of discrimination. For many people of different cultural groups, being able to associate with the chosen identity is part of becoming an aware person. While some categorizations in culture are always going to be applied (e.g. a multiracial person who identifies with their Mexican heritage, but looks Black, and is therefore always categorized as such), one is given the opportunity to live according their own desire and identity. For people with disability, particularly ID, the disability overrides any other competing cultural factors (Thompson, 2007, p. 40). A black man with Down syndrome will always have the disability first and the ethnicity second. A gay man in with sever cerebral palsy will always be seen as the man in a wheel chair, not as a viable partner for another man.
There is also an oppression hierarchy at work, in which those with ID are at the bottom, with queer people with ID crushed at the base (Thompson, et al., 2001, p.55). Even within the subset of ID, there is a hierarchical system depending on the capabilities of the individual. People with a moderate disability want to be involved with people with mild disability; people with mild disability wasn’t to be with someone who has a learning disability or no ID at all (Gomez, 2012, p.240). It runs along the same idea as marrying up within typical society. People with ID, like everyone else, base a part of their self-worth of their ability to be accepted by those they admire.
“It will be shown that our most sophisticated theoretical resources fail to adequately represent the identities and communities of these persons.”
(Thompson, 2001, p. 53)
Several theorists have looked the written about different models for understanding disability on a whole. Amy Swango-Wilson (year), one of the few theorists in the field trying to specifically tie a theoretical framework for the queer ID population uses the Systems Theory to give a framework to the complicated dynamics of sexuality for people with ID, particularly addressing the special considerations for those who identify (verbally or behaviorally) as queer. In Systems Theory, parts are organized into a hierarchy, innately giving power to some over others, but are also interdependently linked.
Swango-Wilson recognizes two basic types of systems; ones in which those with more power rely on stereotypes to devalue the roles of those at the bottom of the hierarchy, and systems that focus on individual autonomy to collaboratively reach goals. These categories can be easily demonstrated in the current attitudes about sexuality and ID. On one side, there are people, advocating based on stereotypes, that sexuality education will sully the innocence of people with ID and lead them to become compulsive deviants. On the other the system implements policies that support and affirm sexuality and then follow through with staff and consumer training. While the end result may be the same because of other systemic and societal barriers, the person with ID does not have fulfill their ideal sexuality, however, in the first scenario, it is a based on the power of the system and in the second it is focused on the skill and autonomy of the person.
Swango-Wilson touches on two aspects inherent to both Systems Theory and disability service systems: the importance of advocacy and the need to instigate change at all levels. When a goal is stated by the person with ID and supported by carers and professional staff, it is much more likely to be realized. As a part of this, people within the system will seek education and routes to meet the goal. Disseminating information and providing opportunities for change at all levels of the system hierarchy is the best way to effect many people in a meaningful way, not just the single catalyst.
This aspect of Swango-Wilson’s application of Systems Theory ties in tightly with the Social Theory of Disability, written most widely about by Shakespeare and Watson (1997) and Oliver (1990). In Social Theory, one’s disability is experienced solely through inaccessibility and social exclusion. Therefore, as more adaptations are made, more connections are made into other networks, and more skills are acquired, the disability lessens. This is clearly at odd with the common Medical theory of Disability (disability is constant, the environment changes to suit it—or not). Within these two models, Systems and Social, there lies a real potential for effecting change in the way disability and sexuality are viewed and supported. The value of accessibility and creating networks is vitally important to the queer ID population.
The work of gender theorists Bussey and Bandura, of the major names in the field of Gender Studies, offer probably the most adaptable and applicable theory for the queer ID population. The Social Cognitive Theory of Gender Development, unlike others that rely on very abstract and vague notions of what gender is and how it develops, offers three ways of learning to perform gender that are based on action and observation; modeling behavior (observation that is incorporated into one’s own actions), enactive experience (watching something and recreating the action), and direct tuition (doing it yourself).
One of the criticisms that could be leveled at Bussey and Bandura is that the theory doesn’t specifically take into account atypical leaning styles, ID and physical disabilities. However, this accusation seems ignorant of the scaffolding and action based methods for learning that are already in place in most ID learning environments. Hand over hand, gestural, modeling and verbal cues are all built into the way skills are currently taught in dayhabilitation settings. Taking the concrete method of teaching, which allies closely with Bussey and Bandura’s Social Cognitive Theory of Gender Development, and applying to partner and gender orientation for people with ID would be a complement to the desire for efficacy and roadmap to it presented.
Regarding trans* identified people with ID, Devor’s Fourteen Stages of Transsexual Identity Formation would be the most fitting theory to modify for the case of some people with ID. One of the issues (to be discussed further in a later section) facing trans* identified people with ID is the issue of informed consent. The inability to guarantee full understanding of the implications and consequesnces of gender confirmation/reassignment action is the part that warrants possible alteration of the Devor theory. If informed consent cannot be guaranteed, the medical aspects of transition cannot be followed through.
However, this does not inhibit a trans* person with ID from expressing their true gender. A trans* person with ID may miss some of the steps in the Devor Theory—for example, the legal and medical aspects represented by the term transsexualism—but, if the stages were to be interpreted in a more fluid manner, they could be applied to any aspect of sexuality development. Devor hits a very centrally human part of identity development in that he addresses the fear of being different and longing to fit in, to the excitement of finding out that there are people who have the same questions, the hesitation about “coming out” with your sexuality, and finally, the pride of living as you truly feel. Devor’s theory, when read broadly, is the most accessible of all.
“The way in which the work reaches across communities and has the ability to challenge and transform work around disability and queer communities. It’s really creative and innovative work –most service providers who are doing queer and disability work is from a clinical perspective and this is working against that.”
(sprOUT, 2013, p.43)
While the general focus in the sparse literature is changing the system, a few positive impacts slip in. Dave Hingsburger, a sexuality and disability advocate, writer, lecturer, and behaviorist, notes an interview in Spectrum Magazine that his agency had recently had the pleasure of supporting a gay couple in realizing their desire to live together. He also mentions a lesbian couple with ID living in the southwest as part of the Navajo tribe. “[They] 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” (Steinberg, 1996).
Many of the positive experiences are generally one-off, personal anecdotes of companionate relationships. One that stands out in my experience is the friendship of Jim and Richard. They had lived together institutionally at Belchertown State School in Cottage Three. Jim was the charismatic story teller, although he didn’t really speak, and Richard would sit and listen to his patter for hours. When the State School was closing, Richard had the opportunity to live in a semi-supported environment, but advocated for his desire to continue living as Jim’s roommate in a group home.
They were an interesting pair. Richard held a steady job at one of the local eateries as a dishwasher. Jim went to day program. When Richard arrived home from work, about a half hour before Jim would get off his van, he would set out one of Jim’s mini cigars and pour him a soda. Jim couldn’t light the cigar himself, so he and Richard would sit on the front porch and watch the wildlife pass. When Richard worked out in the garden, Jim spent his time nearby sweeping the patio and screen house floor. While Jim watched baseball or football, Richard would sit with him on the couch and read the paper. They were, at the very least, partners.
When Richard was diagnosed with pancreatic cancer, the entire house felt heavy. Richard was given a prognosis of less than a year, even if he were to have a stint put in to abate his symptoms. As he became sicker, you could see Jim begin to figure out that something had gone wrong. His first stop when he came home from program was to visit Richard in his bedroom before going for his cigar. On the days where Richard was out of bed, he was permitted to light Jim’s cigar from his recliner in the living room. When Richard passed the Sunday before Thanksgiving, Jim was inconsolable. When the house held a memorial service just as Richard’s favorite flowers began to bloom in the garden, Jim led the group in a chorus of “Amazing Grace,” followed by “For He’s a Jolly Good Fellow.” Anyone who had witnessed their relationship over its thirty year course knew that they loved each other.
There are small pockets of acceptance throughout North America, Australia, and Western Europe for queer identified people with ID. In New Haven, CT, the first Rainbow Support Group was started for queer identified people with ID in September 1998 (Allen, 2003, p. 13). Based on this model, Pauline Bosma, a transwoman receiving services through the Massachusetts Department of Developmental Services (DDS). She coordinates the Mass Advocates Standing Strong (MASS) group, a political lobby and support organization for self-advocates, and is the project manager for the MA based Rainbow Support Groups (RSG) (disabilityinfo.org, 2011).
Initially, there was only one RSG in Central MA, but, with the MASS coordinators and allies in the DDS, Pauline was able to secure funding from the state to bring RSGs to each region ((disabilityinfo.org, 2011) There are now six RSGs throughout the state meeting at least monthly with support from MASS, DDS and the hosting agencies, and self-advocates and allies in each region (mass-advocates.org). While the RSGs purpose is not to provide a dating service, it does provide, “a safe space for discussion and fellowship among people with developmental disabilities who are gay, lesbian, bisexual, and transgender” (Allen, 2003, p.12). In both John Allen’s New Haven, CT RSG and the Massachusetts RSGs, friendships and relationships have blossomed in the environment of support offered.
The RSGs, and organizations like it, demonstrate the biggest success, structurally, in supporting queer people with ID. In the documentary Our Compass, Tess Vo follows a group of teens and young adults labeled with ID who fall along the queer spectrum and, through interviews, photos, and footage, shows them live out some of their fantasies while they tell the stories of their lives. Those featured are members of Compass, a part of the Griffith Center’s sprOUT program, which offers a drop in center for queer youth with ID. From the director, “In the documentary, the participants engage in discussion of topics such as dating, sex, battling stigma and coming out” (Vo, 2010).
Our Compass is more than just a voyeuristic look at the lives of these youth. The participants speak about the pervasive stereotyping that occurs about people with ID, particularly those who are queer, labeling their sexuality as nonexistent, naive, problematic, and pathological. The group does so by asserting themselves as informed sexual beings—the people who have taken charge of their sexuality and their expression. The documentary showcases several themes; freedom, pride, power, love, hope, sexy, and community (Paterson, 2009, p. 129). This idea of community is one of the most uplifting parts of the film. Skyler, a transwoman of color with ID, puts it, “Sometimes it’s really sad but, at the same time, you know you are around friends, so it makes a big queer family that you can always be with” (Our Compass, 2009). Seeing the common idea of the queer family being supported in an ID environment offers a great example of an ideal way to support queer people with ID.
Back in reality: The four S’s of oppression.
The shining examples of how queer ID service is being done well serve to highlight how commonplace disability services are failing to support their consumers. On the whole, misperceptions about sexuality and ID have severe and dangerous consequences. People with ID report feeling isolated and lonely, demonstrate low self-esteem, image and worth. Because of a lack of education, they are more likely exhibit inappropriate sexual behavior and are at a level of risk for sexual abuse and assault and exploitation that can only be described as epidemic (Pilkinton, 2011; UWOSH, 2008; McCabe, 1999). Add to these factors the confusion and discomfort of being a queer in a hostile environment compounded with the inability to articulate your orientation or expression preferences and the picture of sexual identity for people with ID is very bleak.
Challenge series one: The Self.
One of the hallmarks of sexuality education (and most general education) for people with ID is a reliance on concrete ideas over abstract concepts (Henault, 2002, p. 97) and further individualization than would likely be needed in a typical classroom to tie the information with the specific concerns and interests of the learner with ID (Kempton, 1991, p.3). It takes a significant level of personal work as an educator to steer away from the abstract. A good example of this would be using a banana to teach students how to put on a condom. It is great that the fruit has diminished its probability of and STI or pregnancy, but what about participants in the sex act.
The above example is silly and hyperbolic and was chosen because it is no longer a favored practice, but it does illustrate the way a small oversight on the part of those teaching an extremely concrete thinker may have disastrous consequences. Now apply that same idea to the nebulous and nuanced concept gender expression. What is Gender? John Money coined the term to describe the way people act out their masculine and feminine roles in society (Money, 1988, p.77). Fausto-Sterling sees gender as a combination of social (how one is seen) and individual (parts that play into how one wants to be seen) factors (2012, p.7). Butler calls gender a performance of tasks that show maleness or femaleness—and that it is not innately known but learned and habituated (1988, 522). Smith calls gender both just a fact of one’s life and “the issue dominating the meaning of one’s life” (1992, p. 55). Mary Hawkesworth, drawing fire from her colleagues in the gender field, made the comment that Western societies see gender in the binary, unchanging, and natural (1997, p. 650).
Herein lies the difficulty of effectively teaching gender differences to concrete thinkers. If the experts in the field have such divergent opinions on the topic, how do we snatch one thread to show from gender’s diaphanous cloth? Interestingly, the solution is usually to give an assortment of ideas and have the learners talk it out. In a presentation during the 2011 Human Sexuality, Relationships, and Social Skills: Training of Trainers, Pauline Bosma stated it as such, “I know who I am. Some days I feel a little more Paul, some days more Pauline. So, I dress how I feel on that day. But Pauline has been around a lot more lately” (Personal Communication, 20 OCT 2011). For Pauline, at that time, the transition fluctuated internally, and she was fortunate to have the ability to articulate her desire, and right to fulfill it, and a team of supportive professionals to back her up.
There is also the issue of informed consent, particularly in issues regarding trans* people with ID. In this extremely under-researched area of ID sexuality, literature has found that there are three things that happen with issues surrounding gender expression: the person is genuinely transgender or has gender dismorphia; the person cross-dresses and staff perceive this as an indication of transgender; or the gender presentation is attributed to the disability and ignored (Parkes and Hall, 2006). The third scenario, indicative of diagnostic overshadowing, is the most troubling out of the three (266). It indicates a true lack of education on the part of the staff, support to the individual, and systemic failures in care.
Concerns about medical remedies in the case of transgenderism stem from the inability for some people to truly understand the magnitude of full gender confirmation. There are many factors that create concern on the part of doctors and administrators: that the gender expression is a response to trauma and that a full history cannot be obtained to safeguard against traumatic response (265); that the change is fully conceptualized accurately and the subject recognizes the longevity and difficulty of the process; that the gender expression is a result of a concrete view of gender roles, and that rather than being transgender, the person is homosexual, but has internalized that only “opposite” sexes can couple, and therefore must they be of a different gender (266).
Challenge series two: Staff.
Diagnostic overshadowing is present regarding sexual orientation as well. Staff in may surveys expressed the notion that same sex behavior was either part of the disability schema leading towards heterosexuality (Abbott, 2006), was representative of a friendship or confusion, which was then corrected (Martenson, 2004, p. 205) or that the behavior was experimental and just a phase (Gomez, 2012; Abbott, 2007). This attitude is a holdover from the days of sex segregated wards in the institutions. At that time, same sex sexual activity, as long as it was done secretly, was not seen as more than satisfying sexual urges (Hingsburger, 1993). That attitude has since flipped to favor secretive heterosexual activity and shun same sex activity.
Homophobia and heterosexism are rampant and problematic within the ID direct care community. “Whenever staff members in a group home or elsewhere draw attention to [same sex] sexual activity, it is done in either a marginalizing or dismissive manner, or else it is framed as sexual abuse” (Martenson, 2008, p. 25). Gomez, in her research, showed that the sex acts that were least supported (in a theoretical sense) by staff members ranged on the side of activites common in MSM engagement. Anal intercourse and “gay sex” were seen as unsafe sex acts (2012, pp.238-9). In many cases, this is an area where rights are denied under the auspices of informed consent—really attempting to veil homophobia (McClelland, 2012, p. 811).
There is a third, weird aspect of homophobia in the group home dynamic, aimed at openly queer staff members. While one would think that having a staff member who shares this piece with a consumer would be viewed as an asset, many queer staff either stay closeted at work or avoid dealing with sexuality issues out of fear of being accused of abuse. This issue spreads across the levels of oppression, systematic and societally, based on the stereotyping of queer folk as predators with insatiable sexual appetites. Because other staff are uncomfortable with mentorship relationships regarding same sex activity, the stigma and fear remove important opportunities for modeling and enactive experience (Thompson, 2001, p. 57).
Challenge series three: Service Systems.
The major failing of Service Systems can be nicely encapsulated in this anecdote, “The local day center found a couple having sex in the shed—and guess what the day center did to deal with the problem? They took down the shed. I think that says it all, doesn’t it?” (Abbott, 2007, p. 34). Systems approach problems of sexuality reactively, attempting to put out fires rather than just hiding the matches. Frankly, the problems with service systems are numerous and self-explanatory: a regulated lack of privacy in group home and institutional settings; lack of policy supporting and affirming sexuality; physical and financial access to venues where people could meet a partner are limited (Noonan, 2011, p. 176); consent is used as a barrier rather than seen as flexible, buildable, and with the ability to be partial; sexual behaviors are problematized and squelched without corrective education; educational goals are set up based on perceived deficits that a person must meet before engaging in sexual activity, which are sometimes seemingly unrelated to the activity itself (p. 177; Gomez, 2012, p. 238); staff are rarely trained regarding healthy sexuality, and almost never regarding homophobia and heterosexism (Noonan, 2012, p. 177; Jones, 1995); if preventative education is given, it is focused on pregnancy and STIs and not abuse and exploitation (Martenson, 2007, p. 201); and ignominy and degradation are commonplace regarding sexual acts of people with ID in the arenas of pornography, sexual aides, and masturbation (Gomez, 2012, p. 241).
Challenge series four: Society.
There are a number of pervasive societal myths about people with ID and sexuality, and many have been alluded to above. Asexuality and perpetual innocence, sexual deviancy, compulsion and uncontrolled sexual behaviors, that people with ID are going to be inept as sexual partners (the r-word humping the football)—these are the overarching stereotypes of people with intellectual and developmental disabilities (Gomez, 2012, 238; McClelland, 2012, 810).
Regarding queer people with ID, they are either thought to not exist or their roles are completely devalued on multiple levels (Nettles and Balter, 2011, p. 22). Queer people with ID face dual stigmatization, first for their disability, and second their sexual orientation and/or gender expression. This feedback comes from the disabled community, professionals in the disability service field, and, probably most frequently, from the LGBTQI community. Abbott attributes this to queer people with ID not having the “social or financial leverage” to overcome their physical and intellectual deficits (2007, p. 28). The experienced biases of typically intelligent men in the gay community towards those with ID make the community inaccessible and cause the feeling that those with ID are not suitable partners for those without. Lesbians with ID also feel disenfranchised from the larger sexuality community, but also feel that their sexuality is completely unacknowledged as a part of their being (Nettles and Balter, 2011, p. 23).
As a historically oppressed group—having faced segregation, confinement, abuse, forced sterilization, restrictions of basic human rights—the Disability Rights Movement is following in the footsteps of Civil Rights, Feminism, and GLBT Rights. While this should be a situation where one is “standing on the shoulders of giants,” having seen eventual, incremental successes of each of these groups, Disability is struggling. Even within the larger Disability Rights Movement, cognitive disabilities are seen as an afterthought. While there may be many reasons for this, one stands as the central focus: effective communication. People with ID are generally not up on podiums delivering eloquent, moving speeches, rallying supporters to lobby the Supreme Court to overturn Buck v. Bell. The battles for people with ID are fought on a micro scale, the right to buy a porno, the right to go on a date, the right to live as a gender that feels true. All fought one-by-one, seemingly in isolation.