Erin Basler, MEd
26 July 2013
In the relatively new aspect of supporting people with intellectual and developmental disabilities (IDD) recognize and enact their sexuality, the realms of sexual orientation and gender identity remain largely unacknowledged, both in literature and in practice. Many times, same sex sexual activity is seen as based on confusion about friendship (Löfgren-Mårtenson, 2004, p.205). Societally, heterosexual behavior is viewed as the norm for sexual partner preference, and this carries over to the IDD community. The idea of queerness is portrayed as “being a phase,” implying that committing to same sex attraction is beyond the capacity of those with IDD (Löfgren-Mårtenson, 2009, p. 23; Taylor Gomez, 2012, p. 241). Research has shown that same sex partner preference occurs at least at the same rate in the IDD community as it does across the general population (Swango-Wilson, 2010).
Regarding people with IDD who identify as trans*, much of the literature available presents case studies, most of which were found not to meet the criteria for gender identity disorder (GID). The parameters of GID are the clinical basis for differentiating between transgender and transvestitism/cross-dressing (Parkes &Hall, 2006). It is speculated that there is no real way to determine what percentage of the IDD population is not cis-gendered because of the nuanced manner of gender expression and barriers in information and access (Noonan & Taylor Gomez, 2011, p. 176).
Educators sought to work within this population have likely been contacted because there is a clinical need or maladaptive behavior. The educator is to provide skills training and knowledge to the individual while supplying information that allows staff to provide active supports, hopefully encouraging some systemic, agency level change as well. There are numerous obstacles occluding this goal. The following series of practices seeks to address some of those barriers.
Offering educational support to someone with ID means also offering support to all of the careers and interested parties involved in the life of that person. This can include family, guardians, direct support providers, case managers, clinicians, and others. The “team” can be identified as any stakeholders in the well-being and care of the individual.
The team in this application is a micro-level application of Systems Theory, in which the parts are interdependently linked, but organized into a power based hierarchy. Ideally, the team would collaboratively create and achieve the goals that benefit the subject (Swango-Wilson, 2010), however, there are several points where this aim can be derailed. Without creating buy-in at all levels of the system, it is near impossible to have ongoing, effective support for the subject (Swango-Wilson, 2010, p. 162).
In many ways, the team, particularly within the group home environment, functions with a family dynamic. Direct support providers usually fill the “parent” role, providing guidance, safety, and care, with the residents of a house participating in the “child” role (Kempton, 2003, p. 255). By engaging this analogy for the team dynamic, a new series of frameworks apply to provide the educator with a way to function with a team of diverse people and divergent attitudes. In literature regarding family responses to queer youth, the importance of creating a cohesive front within the team can be seen as critical because the positive and negative reaction by carers bring repercussions beyond just an immediate behavioral response. The attitudes foster a supportive or oppositional environment for the subject, affecting self-image, self-esteem, and self-determination (Falik, 1995, p 337).
Louis Falik, in his discussion of family reactions to a child with IDD, lists several negative responses from care teams. Two of the reactions described apply particularly well to the team dynamic; the adversarial reaction, in which an outsider comes in and is asked to “fix” the problem rather than investigate the root, and a pattern where reactors defer to the “expert” while simultaneously undermining interventions (1995). The adversarial response, as described by Falik, is based on the perception that an outsider is coming in to scrutinize and change the current system. These frameworks identify the biggest potential pitfall for the educator—a lack of support and follow through from the most influential people on the team; those who are responsible for daily care and interaction with the learner.
When approached in a way that recognizes their significance in the life of the subject and their importance in the success of intervention, the team plays an invaluable role. Within the team, an educator can finds allies with whom to create a partnership to influence future care. Open communication and the development of trust help to alleviate concerns about the educator’s (or the person who served as a catalyst for enlisting the educator) motives and agenda, as well as creating an environment conducive to working out misunderstandings before they become insurmountable. Clear communication with the team somewhat guards the educator from liability issues that might stem from miscommunication in a bad working relationship. Finally, as mentioned previously, the attitude of the team, especially direct care providers affect the sense of security and support of the subject immensely (Kempton, 1991, p. 75; 2003, p. 533).
In the past, the guardian was seen as the final word in decision making for a person with IDD. While this attitude still persists, it is more of a holdover from when one was appointed “guardian of the person,” a role that provided complete power over all aspects of the subject’s life (Dinerstein, 2010, pp. 12-13). Guardianship with such a wide scope has become less common since the beginning of the disability rights movement and the push for deinstitutionalization. It is much more common to see people appointed guardianship over specific aspects of a person’s life, such as a representative payee or healthcare proxy determination.
Regarding sexuality, particularly in the socially and morally charged avenue of queer identities, the opinion of the guardian is given disproportionate importance. Case law is increasingly supporting the autonomy of people with IDD to dictate their sexual lives given the proper support and education (Roe v. Wade, In re Moe, 1982; Ames & Samowitcz, 1995, pp. 266-267; Sundram & Stavis, 1994, p. 258).The National Guardianship Association speaks against “of the person” decrees in favor of specific, limited guardian power (NGA, 2007, p. 7). This is not to say that the educator should completely discount the opinions and concerns of the guardian. Representative payees still control the money and can limit spending access. Medical proxies still need to be informed of and consent to procedures and treatments, which is of particular concern for trans* people with IDD.
Ideally, in a situation where an educator has been asked to provide support to a person with IDD, queer identified or not, the entire team has the best interest of the individual in mind. However, what is in the best interest of the person can vary widely depending on the perspective of the team member. Concerns about pregnancy prevention and the control of sex drive often trump prevention abuse and self-determination that may entail risk (Löfgren-Mårtenson, 2004, p.201). There is no standard set of goals for this facet of education because it is so dependent on the skills, knowledge, and specific needs of the learner. The educator needs to establish expectations with the team about their role in support provision; not aiming to “fix the problem” by eliminating sexual urges and behavior, but rather to provide knowledge and skills and to encourage autonomy and increase safety (Kempton, 1991, p. 52).
Research has repeatedly reported the attitude of team members that queer behavior is a characteristic of the IDD—attributing it to confusion, lack of access, need for sexual outlet—rather than as an act of self-determination (cite). Zucker and Bradley presented questions for therapists to consider with the families of gender-variant children that can be adapted to fit the needs of addressing sexuality issues with queer people with IDD: ask the team to elaborate on the problem; adapt assessment to the capabilities of the individual; through assessment, determine the actual problem; address with the team if the issue actually a problem for the person, or if it is a problem for the team; determine the root cause (1995, p. 330).
In some cases, there will be a concrete root cause that is not based innate feeling or attraction, but is rather a response to trauma. Henault, discussing Asperger’s Syndrome, presents a case in which a young man, in response to his diagnosis of AS, had changed his gender identity to female, having concretely associated his diagnosis of AS with his maleness. Henault also cites situations, where after abuse or assault, the individual will respond with drastic changes in sexual identity and orientation (2006, p. 78). This idea is supported by the case study presented by Parkes and Hall (2006, p. 260-1) in which a man had survived a violent sexual assault at age 16 in which the perpetrator had forced him to wear women’s clothing and developed a female identity thereafter. The sudden, polar change in identity expression in these cases was the indicator of a trauma-based root.
While a trauma root may be a consideration in cases of sudden drastic change, the educator needs to be prepared to defend the notion that not all, or even a significant number of queer identities can be attributed to trauma, confusion, lack of access, or curiosity. LGB orientation has been found to occur in the IDD community as often as in the typical community (cite). Identifying trans* populations proves more difficult because gender expression can so fluid and the language has not necessarily penetrated the mainstream in an accessible way (cite). However, there are individuals with IDD of varying capacities that identify as trans* and have begun their (albeit sometimes limited) transition.
There are three levels on which assessments should occur: the individual with IDD, the team members (specifically the direct support professionals), and the system that provides services to the individual. The process of assessment should involve individual interviews, group discussion and historical and policy research. Establish a “Trusted Friend Who Can Help” for contact and support based on the request and preference of the main learner.
Assessment should be based on the CBA (cognitive, behavioral, affective) model of developing objectives (Gunter, Estes, & Schwab, 2003, p. 25). While assessing the CBA of the individual, the educator should be looking for general anatomical, physiological, and sexual knowledge, feelings about their queerness, and some general information about sexual history. For staff members, the most important area to assess is the attitude towards the perceived problem, as well as gathering background information about the learner and a general idea of the strengths and deficits in staff support of the individual’s queer identity.
The interview with the learner should be conducted in a way that ensures continued control and comfort of the learner. Establishing ground rules prior to the interview, encompassing explanation of the assessment procedure and consent to the interview, as well as including reassurance that the learner can opt out or pass for any question. Laying the foundation for mutual trust and respect will ensure a better working relationship and a more receptive learner.
The educator should begin the interview process by focusing on knowledge questions, like concrete anatomy, which will indicate the level of sophistication in the user’s common vocabulary about bodies and acts. This serves a dual purpose. First, it creates a common lexicon from which to work in providing instruction (e.g. using the medical terminology penis, but the learner only knows the colloquial dick) and allows the educator to sandwich terminology to introduce medically accurate terms (Kempton, 91, p. 99). Second, by employing the explanatory model of assessment (Skinner, 2007, p. 305) the types of phrases and ideas used by the learner to answer questions, compared to interviews with care staff and team members, will indicate where misinformation and negative attitudes are originating from so they can be addressed subtly and without creating an adversarial environment, or, conversely, the positive and affirming language that could indicate previously unidentified allies.
During the interview, the educator should investigate the way the subject perceives themselves as a queer person. There are a number of models for queer identity development, mostly echoing the themes identified by Vivienne Cass; confusion, comparison, tolerance, acceptance, pride, and synthesis (1984, p. 147-53). Overlapping the Cass model with Carol Gill’s model of disability identity development after the community integration movement: coming to belong (in the larger society); coming home (finding connections within the disability community); coming together (reconciling the internal struggle between disability and self); and coming out (publicly and proudly identifying as a member of the community), would provide some direction to the educator as far as how to proceed with a queer learner with IDD (year, p).
Awareness of cultural considerations is an occasionally forgotten necessity in the field of sexuality education, but it is one of the most informing factors in the success of an education program. In the extended family dynamic of the team, the cultural norms of staff members need to be recognized and affirmed, while still making clear the expectation that the well-being of the individual—according to their own desires—is the goal of education. For team assessment, Kempton recommends values clarification exercises to give opportunities to examine the process behind the values one holds. Knowing the reason behind a belief may allow staff members to recognize that others with divergent values have their own motives, and then staff can work collaboratively to create strategies for supporting the individual (1991, 119-20). As Henault puts it, values clarification exercises will begin to “stop associating diversity with perversity” in the minds of staff (2006, p. 77).
Assessing the care system starts with two questions: is there a policy about sexuality? and does the agency offer training about sexuality and sexual diversity for staff? (Abbott, 2007, p.123). Some agencies may have incomplete or boilerplate policies (e.g. “X Agency supports and affirms the inherent sexuality of all consumers”). In the case that the agency has neither a sexuality policy nor education, it would behoove the educator to submit a recommendation for policy creation and start a discussion relating to staff training, at least in the home of the learner.
A good sexuality policy encourages autonomy over guarding against liability. The non-statement policy example above is a liability consideration. It vaguely supports sexuality, but leaves the breadth to which it will support to the discretion of team members. It also does not engage any sort of protocol for reporting sexuality concerns and issues. Without a concrete set of expectations for how education will be accessed, the shuffle of intra-agency communication can hinder support. The policy should address the idea of informed consent and, as many people receiving services are also under guardianship, it is important that provisions not only for measuring capacity to consent are addressed, but methods for increasing capacity to consent are included in that discussion(Kennedy & Niederbuhl, 2001, p. 507). Finally, does the policy discuss the expectation that staff will support the choices of people with IDD in care, regardless of their personal values on the subject (Löfgren-Mårtenson, 2004, p.204)?
The most difficult aspect to determine at the start of assessment, unspoken rules and policies may be revealed throughout the education process. In the absence of an official policy (and sometimes, in spite of it), staff will implement “house rules” (McClelland, 2012, p. 811). Rules that infringe on privacy (e.g. no closed doors with potential partners), rules that enforce unreasonable expectations of behavior (e.g. deficit based rules regarding relationships), and active opposition to sexual activity in an overt or covert manner (e.g. preventing masturbation by performing frequent room checks, invoking the notion of capacity to consent to prevent sexual activity) are a few examples of the types of unofficial mandates that may inhibit sexuality identity expression.
Not all of these rules come from personal bias and ill-intent. There are also issues of control. In the case of gender-variant people with IDD, they may not have much input into the clothing they buy or wear (Taylor Gomez, 2012, p. 238). Many times this will piggy-back on the idea of creating a normalized appearance. Some house rules may be adaptations that staff have made to manage behavioral problems or interpersonal dynamics (e.g. no making out in the common areas because it triggers behavior in a roommate). It is best investigate the motives behind unofficial rules. In cases where the rule addresses a legitimate concern, suggest that house rules be added to behavior plans or personal profiles, thereby making them official and subjecting them to scrutiny (Taylor Gomez, 2012, p. 239).
Kempton addresses the importance of training all members of the team, not just the direct service providers: the administrators because they control funding and make policy; the professional staff (clinicians, nurses, OT, PT, etc.) because they are responsible for creating the plans and programs that are implemented; direct service providers because they are the “front line” responsible for implementing plans and monitoring behavior and well-being; and parents/guardians because their inclusion in the process increases the likelihood of support (2003, p. 232-3). After individual support, the goal of education should be to remove stigma from sexual activities. This is a particularly salient point for queer people with IDD, whose sexual behavior and orientation are often problematized and pathologized (Löfgren-Mårtenson, 2009, p. 23).
Of these, the direct service providers are the most important group. Although people in higher positions within the system have more power to affect change institutionally, the direct service providers have the most influential role in ensuring the reinforcement of lessons and strategies. Vygotsky’s Zone of Proximal Development supports this notion stating that development begins when the learner requires assistance with a task, and through repeated assistance with the task (provided by direct service staff), they become independent, at which point learning is said to occur (Hickey, 2005, p. 280). However, staff report that they don’t feel comfortable discussing sexuality because they feel unqualified and underprepared. They are also concerned about crossing the will of the parent or guardian and facing administrative consequences as a result (Abbott, 2007, p. 34). Studies have found that staff do not receive the necessary training to address sexuality issues (Noonan, 2011, p. 176; Jones, 1995). Those that have received training tend to fall into one of two categories; more experienced staff members find the training repetitive and boring, newcomers feel that the training is not comprehensive and does not give them enough information (Hewitt & Larson, 2007, p. 151).
Hingsburger in one of his earliest publications attributed maladaptive sexual behavior to seven problems: a confused self-concept; social isolation; lack of sexual knowledge; having to engage in furtive sexual behavior; negative sexual experiences; an inconsistent socio-sexual environment; and/or a lack of personal power (1987). These seven categories continue to be reinforced in research and literature in the arena of sexuality and IDD populations. Hingsburger’s seven problems are reflected when examining some abuse and assault rates in the IDD population.
The need for education is not only informed by a concern about autonomy and quality of life, but also by the epidemic levels of sexual abuse and assault occurring in the IDD community. Between 70-90% of people with IDD will experience sexual abuse, assault, or exploitation in their lifetime (DPPC, 2011). More than 90% of teachers have reported teaching a student with IDD who had survived incest or sexual assault (Brantlinger, 1988). Of the victims of abuse, almost half will be victimized ten times or more (DPPC, 2011). The most troubling statistic on the topic is that 91% of perpetrators fall into the categories of family, friend, or caregiver (UWOSH, 2008).
Further, studies show that queer youth with IDD are at greater risk for harm in the form of self-injury, suicide, bullying, physical assault, and SIT/HIV infection due to additional social stigma based on their disability (Hingsburger & Pendler, 1991; Griffin & Hingsburger, 1986). The GLSEN 2011 National School Climate Survey reported that 71.3% of typical students reported hearing slurs against the queer community and that 84.9% had hear misuse of the word “gay” (p. xiv). Queer identified students were found to have lover GPAs than their straight/cis peers, at 2.9 and 3.2 respectively (p. xv). Taking into account this potential minefield of sensitive issues and trauma history with queer people with IDD, as well as learning style considerations, educational methods should be carefully and thoughtfully selected.
The tenents of andragogy help build sustainable education strategies for people with IDD. The desire for applicable, practical life skills and knowledge, a recognition of learner experience as expertise, and a collaboratively set agenda will create significant investment between the learner and educator (Travis, 1985 in Bowman & Plourde, 2012). Greenberg’s COGNET tools for independent learning elaborate on these ideas to discuss aims such as feelings of competence, awareness of personal change, and inner meaning (1992, as in Falik, 1995, p. 336). Combining these motivations with the three methods outlined in the Social Cognitive Theory of gender development and Differentiation; modeling behavior, enactive learning, and direct tuition, give a solid path on which educators can build their lessons (Bussey & Bandura, 1999).
Once the assessment is complete, having the learner look at a list of topics or suggest their own interests is a good way to create an investment in the learning process. Once the agenda is tentatively set, utilizing person centered planning (PCP) could serve the dual role of addressing the agenda with the team for input, as well as informing the educator about the activities, interests, and hobbies of the learner to direct teaching methods.
Information from PCP sessions offers strategy for building resiliency skills. Conversations about sexuality and identity increase adaptive and protective skills, resiliency, social intelligence, and the ability to avoid or learn from making mistakes (Noonan, 2011, p.178). For learners with an emerging queer identity, these skills will help mitigate distress throughout the process (Lev, 2004, p.340). Rosenberg noted a higher success rate in social skills education where self-acceptance and esteem were increased and the emerging identity was supported, rather than changed (2002). The emerging identity can be supported by “trusted people” in current social groups, while additional social opportunities are sought.
In the Gill’s four stages, she addresses the importance of recognizing and fostering one’s own identity as a basic developmental task. However, she also states that group identity is an important part of self-acceptance and pride. “Coming home” refers to having found people within one’s own minority community who “just get it” because they have followed a similar path (1997, p.42-3). Because, in the past, people with IDD were housed together in institutions, finding a place to come home to is much more difficult than it has been in the past. The Social Cognitive Theory further supports community engagement. Its three modes; modeling behavior, enactive learning experience, and direct tuition (Bussey & Bandura, 1999, p. 686), should be considered both because of the cognitive complexities that may be present and their ability to impart CBA actively and passively.
For queer people with IDD, exercising the right to be included in the larger social system increases autonomy and self-esteem (Swango-Wilson, 2010, p.162) To foster social connections outside home and work, the educator should familiarize themself with local possibilities. The Rainbow Support Groups (MA, CT) or similar establish social support groups for queer people with IDD. Self-advocacy groups which, although they do not focus on queer issues, connect people with IDD who have an interest in speaking for themselves and their rights. These “like” groups for socialization allow the participant to engage in both modeling behavior and enactive experience. By seeing their peers act a certain way, the participant will be able to integrate the actions of the peers into their own script. There is also an element of group efficacy (Bandura, 2000) that may occur from having a common purpose and complementary skills within the group.
Another option would be to find a mentor within the queer community (possibly with IDD). Ideally, this would be a person already affiliated with the learner. Unfortunately, queer staff working with queer people with IDD have reported being leery of engaging in mentorship with consumers, fearing reprisal (Thompson, 2001, p. 57). This removes a valuable resource from the learner, as these staff mentors could provide further community connection and integration as well as modeling behavior. While the person with IDD may be mimicking the mentor’s expressive behavior, they will also be receiving messages about social norms within the group and appropriate interaction. If a queer staff member were willing to act as a mentor, this would create an excellent opportunity for the queer person with IDD to be integrated into a larger social network, in the process gaining social capitol, increasing self-esteem, and providing opportunities to learn new skills and behaviors in their emerging identity. Hopefully, the person with IDD would participate in the larger network, building trust and eventually becoming a valued part of the group (Hayden, 2009, 123).
Adhering to a gender identity that is different from biological sex is not an easy road. Discrimination, lack of access to medical support, poorly trained physicians, cost-prohibitive procedures and medication, fear of violence, pressure to pass—these are likely barriers for trans*people in the typical community. In the IDD community, trans* people are faced with a number of additional roadblocks. The first is diagnostic overshadowing. Much like same-sex attraction can be attributed to factors other than orientation, gender variance is subject to similar excuses; confusion, deviancy, trauma response.
Due to lack of education and the nuances of being eligible for transition, many people with IDD don’t meet the standards used by therapists for GID, and therefore medical transition. In speaking about their hesitance to perform genital surgeries on adolescents, Cohen-Kettenis and van Goozen state that the chances of making the wrong diagnosis and the risk of post-surgery regret are too substantial because of the adolescents developmental stage (1991, p. 263). Where does this leave people with developmental delays? A new standard needs to be created for people with IDD to allow them some access to medical transition.
The educator can support authentic gender expression in several ways. Aiding the person transition in appearance, which may be the extent of their transition, by supporting access to appropriate clothing and undergarments, providing resources to teach nuanced skills (like make up application or voice masculinization), or connecting the person with IDD to a mentor. Offering education, support, and resources to staff members and family continues support. This may involve performing values clarification exercises. It could entail connecting the family with support groups. It may mean reminding staff that their job is to protect the individual and support self-determination.
“A capable sexuality education teacher realizes that he is not there to judge but to teach; that he is not there to change behavior unless it is causing trouble at the time or may in the future” (Kempton, 1975, p. 534). There may have been a time when queer identities could have been said to cause trouble, but society is slowly moving beyond that point. However, for IDD communities, there is a paradox in place. Where homosexual activity was once accepted as part of the natural order in same-sex institutional setting as long as it was kept private and heterosexual relationships were shunned, now the converse is true (Hingsburger, 1993). Homosexual activity, even as innocent as kissing, is seen as problematic and risky (Taylor Gomez, 2012, p. 238-9).
Queer people with IDD have always been part of the disability community, but their behavior was seen as an act of necessity, not desire. Now, following the path of Civil and Equality Rights and bound with Disability Rights, queer people with IDD are becoming more public with their desires. Embedded in the push for self-advocacy, the right to sexual expression has become more than just about intercourse. It has become a statement about living life authentically and unapologetically according to one’s desires. Societal perception is the major hindrance to that goal and, as educators of queer people with IDD, our duty is to chip away at the stigma.
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