Introduction

This chapter addresses the intersectionality of being disabled and lesbian, gay, bisexual, pansexual, queer (generally referred to as queer in this chapter) or heterosexual. Topics include the prevalence of queer and disabled people and experiences of coming out as queer and/or disabled when living with multiple cultural identities. Theories related to sexual orientation (e.g., queer theory) are critiqued relative to their inclusion of disability identity. We also consider the contributions of queer disabled people to queer civil rights movement despite the marginalization of disabled people within these movements. Also included in this chapter is a discussion of human sexuality and disability as it relates to social norms, stigmas and body image. Common views and portrayals of disabled people as de-sexualized and labeled as non-sexual will be addressed. We will also address how the dignity of risk concept relates to sexuality among disabled people, focusing on intellectually or developmentally disabled people. This point will be related to the challenge of not getting inclusive sex education for disabled youth and adults. We will review key sexual orientation and sexuality-related laws, policies, programs and exemplar agency regulations relevant to disabled people in the United States. For example, we discuss federal laws that allow for same-gender marriage. We also discuss national and local policies regarding sex education curricula.

Introduction

Sexuality is central to the human experience. It encompasses sex, gender identities and roles, sexual orientation, eroticism, and social well-being related to an individual’s sexuality (WHO, 2002). How individuals experience and express sexuality varies and can be influenced by biological, psychological, social, cultural, and religious factors (Southard & Keller, 2009). Disabled people have similar sexual and social needs as their non-disabled counterparts, but they experience unique barriers related to their sexuality (Goulden, 2021; Kaufman et al., 2007; Lee et al., 2020; Liddiard, 2013; Owens, 2015; Shakespeare, 2000). For instance, disabled people experience harmful societal stereotypes that de-sexualize and label them as non-sexual, incapable, or uninterested in sex/relationships (Addlakha, 2007; McCabe & Holmes, 2014; Toft et al., 2019), heightened vulnerability (Mueller-Johnson et al., 2014) and infantilization (Shildrick, 2007). These stereotypes and other ableist misconstructions conspire to restrict disabled people’s access to cultural representations, suitable education and resources, and professional services and support in the community.

In the early 1900s, the primary focus of the disability rights movement was to increase disabled people’s access to physical spaces and employment opportunities. Organizations that contributed to the disability rights movement have been in place since the 1800s but became more widespread in the 1900s (Grim, 2015). The Americans with Disability Act (ADA) (1990) and the subsequent ADA Amendments Act (2008) are major civil rights laws that prohibit discrimination against disabled people in many aspects of public life (e.g., employment, schools, transportation) and places that are open to the general public. Regardless of the progress, the disability rights movement continues to advocate for equal rights, especially those related to sexual and reproductive rights. Sexual and reproductive rights have not been central to human rights initiatives and the disability rights movement, being largely ignored. In the early 1990s, Anne Finger (1992), an American disabled author and activist, wrote,

Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about—and formulate strategies for changing—discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction (p. 3).

Shakespeare (2000) concurs that sexuality has been easier to ignore within disability rights advocacy than to engage with something from which so many people have been excluded. Just confronting topics of sex and love can be very intimidating since disabled people have a long history of experiencing abuse and living in isolation (Shakespeare, 2000; Shakespeare & Richardson, 2018). However, as initiatives for increased access to physical and social spaces have increased, many disabled people have begun rejecting sexual oppression and advocating for sexual and reproductive rights (Liddiard, 2018; Santinelle Martino & Campbell, 2019).

Sexual and Reproductive Rights

Sexual and reproductive rights are fundamental to the philosophical foundation of social work practice because of the profession’s overall goals to improve the health status of populations, advocate effectively for social justice, and respond to global realities (Alzate, 2009). Achieving sexual and reproductive rights involves accessing health services and education, particularly sexual and reproductive health services and education (Alzate, 2009). Social workers can play fundamental roles in sexual and reproductive health services and education and are well-placed to advocate for positive and necessary changes.

Disabled people face adversity in achieving their sexual and reproductive rights and accessing health services and education due to various social and structural factors. Petchesky (2000) identifies several broadly defined factors that limit access to sexual and reproductive health services and education, such as government policy and laws, insufficient investment in health care services, inadequate health insurance coverage, and lack of enabling conditions to make individual choices among others.

Research suggests there are several barriers for disabled people accessing sexual and reproductive health services and education. First, many social service workers within healthcare institutions acknowledge their discomfort and unpreparedness in supporting disabled people with issues related to their sexual health and refrain from including this domain within their professional practice (Bolin et al., 2018; Kattari & Turner, 2017). Second, pre-existing sexual and reproductive health education tends to be designed for non-disabled people and is often inapplicable to or inaccessible to people with disabilities (Ballan, 2008; Campbell et al., 2020; Kijak, 2011; Löfgren-Mårtenson, 2011). Third, within social work research and practice, issues related to sexuality are predominantly focused on risk behavior and negative sexual experiences (Myers & Milner, 2007; Shildrick, 2007).

Sexual Health Risk Perspective

Sexual health is typically defined by the absence of disease, dysfunction, and illness (WHO, 2006). Sexual and reproductive health research primarily focuses on risk and negative sexual experiences, such as youth pregnancy, sexual abuse, and sexually transmitted infections (Lee et al., 2020; Myers & Milner, 2007; Shildrick, 2007). A review of scientific literature from January 2006 to May 2017 found that most online sexual education resources for young people primarily focused on risk-related behaviours and prevention (e.g., STIs, pregnancy, sexual abuse) (Todaro et al., 2018).

The focus on sexuality as solely risk-based is dominant in social work literature, education, and practice (Dodd & Tolman, 2017). A traditional risk perspective of sexual health reinforces imbalanced perspectives between positive sexuality and sexual health risk factors in the profession, emphasizing the latter (Dodd & Tolman, 2017). One explanation for a dominant sexual health risk perspective in social work may be the profession’s focus on negative sexual experiences (e.g., abuse) in the field (Myers & Milner, 2007). One perilous outcome of prioritizing sexual health risk factors over other aspects of sexuality in the profession is the impulse to label some service users in particular as sexually vulnerable or ‘dangerous,’ which can reinforce restrictions on opportunities for sexual development (Fish, 2016; Lee, 2020) and the marginalization of certain groups (Turner & Crane, 2016).

Sex-Positive Social Work

Sex-positive social work embraces sexuality as a human right (Dodd, 2020). It promotes positive discourse about healthy sexuality and aligns more with a strengths-based perspective (Dodd, 2020; Dodd & Tolman, 2017). A sex-positive social work perspective encourages human agency in sexual decision-making and embraces consensual sexual activity as healthy and something to be enjoyed without stigma or shame. Human agency is “an individual’s capacity to determine and make meaning from their environment through purposive consciousness and reflective and creative action” (Houston, 2010, as cited in Parsell et al., 2017, p. 239). Although sexuality is prominent within social work practice, as social workers are engaged with aspects of sexuality across virtually all practice domains, many social workers have internalized sociocultural taboos about discussing sexuality, so the topic gets avoided. While social workers have embraced the notion of working from a strengths-based perspective, sexuality is still predominantly approached from the opposite direction, focused on risks and possible harms.

Gender and Sexual Diversity

There are over 20 million lesbian, gay, bisexual, and transgender (LGBT) adults in the United States (nearly 8% of the adult population), which is much higher than previous estimates (HRC, 2021).[1] LGBT people are more likely to experience disability than the general population (Movement Advancement Project, 2019). Findings from a study conducted with data from the Washington State Behavioral Risk Factor Surveillance System suggest that the prevalence of disability is higher among LGB adults than among individuals who self-identify as heterosexual (Fredriksen-Goldsen et al., 2012). While there is a need for more research on this, some of this may be due to the mental health challenges that accrue in response to living in a world rife with homophobia and transphobia. In addition, the 2015 United States (U.S.) Transgender Survey reported that nearly 40% of transgender people in the United States are disabled (James et al., 2016).

It is important to note that there are potential inaccuracies related to the size and prevalence of the LGBT population due to a limited understanding of gender and sexually diverse populations in research and the use of non-comprehensive measures (Bragg, 2020). For example, the conflation of constructs used to comprise and define human sexuality (e.g., gender and sex) within research studies perpetuate an underrepresentation and erasure of groups of people who are non-identifiable within the preconceived labels.

Experiences of Coming Out as Queer

The challenges and processes related to coming out primarily depend on a person’s intersecting identities, social and family environment, and personal goals and values, among others (Author’s Own, under review). For many people, coming out means losing friends and family and nurturing new community belonging (Author’s Own, under review). For disabled people, coming out can be particularly difficult (Stoffelen et al., 2018). For instance, when lesbian and bisexual women with intellectual disabilities were asked about coming out, they reported dealing with the process alone, feeling insecure about themselves, having challenges standing up for themselves, and experiencing challenges being understood (Stoffelen et al., 2018). The marginalization of queer and disabled people is not new (Brownworth & Raffo, 1999). They experience discrimination, violence, and mistreatment in the systems they are engaged with, including policing, employment, housing, and intimate partner violence (Ridriguez-Roldan, 2020). In a recent study with 13 disabled LGBT+ youth, participants reported that their decisions to come out were complex and complicated by both ableism and heteronormativity (Toft, 2020). Participants also expressed the importance of being involved in communities of like-minded people, which positively impacted their identity management (Toft, 2020). Many queer and disabled people do not share these identities with immediate family members or in certain care relationships, emphasizing the importance of community (Samuels, 2003).

The phrase “coming out” typically refers to experiences of lesbian, gay, bisexual, queer, asexual, and other non-heterosexual identities (Author’s Own, under review). Yet, this phrase is associated with other identities like disability (Author’s Own, under review). Individuals with hidden disabilities also contemplate coming out (Kattari & Beltran, 2019; Spangenberg, 2018). Therefore, many LGBTQ people with invisible disabilities may perform their coming out process multiple times with the same person or partner (Kattari, 2015). Because of their experiences living with marginalized identities, it is crucial to have a partner(s) that understands and supports both identities (Kattari, 2015).

Many LGBTQ young people with disabilities feel isolated, making coming out particularly difficult. Eric Ascher, a neurodiverse gay man, shares that “I was afraid to be seen as gay because I already was being bullied … and I knew being “the gay kid” could only worsen my situation” (Ascher, 2018). Women with intellectual disabilities often deal with the coming out process in isolation due to the lack of connections with other queer women and representation (Stoffelen et al., 2018). When disabled queer people come out, they sometimes experience invisibility and erasure from the communities they identify with, leading to increased feelings of isolation and seclusion (Kattari & Beltran, 2019).

Theoretical Perspectives

We highlight three prevalent theoretical perspectives informed by disabled scholars and promote an intersectional anti-oppressive approach: crip theory, queer theory, and sexual citizenship. Although these theoretical perspectives have only recently appeared within social work literature and education, they are valuable for disability social work practice and promoting an anti-ableist agenda.

Crip Theory

Crip theory is situated within critical disability studies (Goodley, 2014). Crip is the non-compliant and anti-assimilationist position that disability is a desirable part of the world (McRuer, 2006). It is a lens that directly challenges the medical model of disability. It does not consider disability as inferior or needing fixing but as an aspect of human diversity that brings value to the world (Linton et al., 2017).

Crip theory radically challenges the separation between what is defined as normal and abnormal (McRuer, 2006). McRuer (2006) reasons that abnormality is contextualized by “normal” and vice versa. McRuer does not visualize abnormality and normality as a dichotomy but suggests that “normal” is dominated within institutionalized systems and then dominates what is considered abnormal. The perception of normality creates the person’s desire to be in the dominant “normal” group (i.e., non-disabled) and avoid being classified within the non-dominant group. This phenomenon is named compulsory able-bodiedness/able-mindedness in crip theory (McRuer, 2006). More precisely, compulsory able-bodiedness is the expectation that normalcy is something everyone wants to achieve (McRuer, 2006).

Compulsory able-bodiedness assumes that everyone has the desire to be non-disabled (McRuer, 2006). Therefore, the absence of disability is not just a standard for what is considered normal, but everyone is endeavoring to achieve normalcy to reach their full value of what it means to be human. However, the normalcy standard is not achievable nor desired for or by everyone. Crip theory emphasizes a distinct disabled identity and culture made up of individuals who must challenge discriminatory texts and actions which appropriate them (Rohleder et al., 2018). In McRuer’s (2006) text, he visualizes crip as that which “questions – or takes a sledgehammer to – that which has been concretized” (p. 35). Crip is used more frequently by individuals self-identifying as disabled and their allies to deconstruct those meanings (Chandler, 2012; Clare, 1999; Sandahl, 2003). Like queer theory, the community has reclaimed these words that are typically used against both groups.

Crip is considered an inclusive term, representing all disabilities experienced by people with vastly different physical and psychological differences. However, as some authors note (Santinele Martino & Fudge Schormans, 2018), attention to intellectual disability is largely absent in crip theorizing. To help prevent fragmentation within the disability community and exclude people from fully participating in the disability community, crip theory rejects disability hierarchies that place value on different disability groups over others. In addition to “crip” being used to describe a person in the disability community, the term crip is often used as a verb. Sandahl (2003) describes cripping as “spinning mainstream representations or practices to reveal able-bodied assumptions and exclusionary effects” (p. 37).

Crip theory interrogates constructions of normality by focusing on the differentiation between disabled and non-disabled bodies/minds (Löfgren-Mårtenson, 2013) and considering impairment as more than an “unwelcome presence” (Shildrick, 2009, p. 32). This provides a foundation for intersecting disability and sexuality. Crip theory modifies the pathological discourse from undesired bodies to make room for thinking about the crip body as desirable and fulfilling (Liddiard, 2018). Within sexuality, this shift exceeds normative expectations and boundaries for the body (Liddiard, 2018). As discussed at the beginning of this section, assimilation is not the goal of crip theory, nor is it to normalize disability in this context; crip theory pursues the possibility of disability itself as desirable (McRuer, 2006). As Liddiard (2018) states in her text, “Crip bodies are dynamic in their non-normativity: casting away medically imposed notions of deficit to reimagine bodies that may be ill, sick, and impaired as transgressive and vital” (p. 38).

In Liddiard’s (2018) study, disabled men were interviewed about their intimate and sexual lives. One participant described their disgust when touching others, feeling the warm breath and bodily warmth, which developed in his earlier experiences with illness and disability. For the participant, looking and observing were safe and how he engaged with his sexuality and desire. Liddiard applies crip theory to this participant’s story by considering how their engagement with pleasure offers a “transformative potential of crip” by the cripping of pleasure through decentering touch and affirming eroticism through visual models (p. 107). In the participant’s example, crip theory deconstructs notions of normalcy and emphasizes that an everyday existence exists and that disabled people are often excluded from it. McRuer (2006) claims that the objective of crip theory is not to eliminate constructions of normalcy because this feat is impossible; instead, the goal is to re-evaluate and reassess able-bodiedness to create transformative spaces where participation does not rest with the functional body. It can be emancipatory in this way (Sykes, 2009). As Goodley (2014) affirms, “being disabled is not a tragedy but a possibility, an affirmation, a crip space for rethinking what it means to be human, to live a quality life and a life with quality” (p. 160).

Crip theory poses that disability is a valued, diverse, and desirable part of the world. It is non-compliant and anti-assimilationist in relation to normalized ideas about being human and living in the world. Crip theory enhances the widely accepted social model of disability by expanding discussions around accessibility issues to include ideas about disability identity and embodiment. Additionally, it provokes new ways of thinking about sexuality by applying the concept of compulsory able-bodiedness to deconstruct, re-evaluate, and reassess preconceived notions of sexual and reproductive health.

Application to Disability Social Work Practice

Crip theory is minimally acknowledged in social work practice, research, and literature. This lack of representation is unsurprising given the lack of disability content and disability studies crossover with social work education, and the structural and organizational barriers that prevent professional representation in the field. Thompson (2019) offers a critical commentary on how she, a self-identified Black disabled woman, has worked to fill a representation gap within social work. Thompson explains how she created her online platform to offer her perspective on integrating crip theory and social work. She suggests technology as one approach to connecting social work with the disability community because it increases accessibility for people who are typically excluded from the discussion.

Implementing crip theory in social work practice aids the practitioner in broadening their preconceived notions and conceptualizations of sex and sexuality. To “crip” social work practice and our understandings of sexuality is to expose discourses of compulsory able-bodiedness, even in contexts not explicitly focused on disability (McRuer, 2006). Social workers can reflect on how the meanings of sexuality and sex are defined within their practice contexts and subsequently expose meanings that are produced within conventions that privilege able bodies and normalcy. For example, meanings of sex are often inexplicably linked to the physical body; however, some disabled people consider physical aspects of sexual well-being inferior to emotional, social, and psychological ones (Lee, 2020). It is vital within social work practice to refrain from assuming what sexuality and sex mean for disabled clients as these vary widely.

Queer Theory

Queer is a political identity and positionality adopted by individuals who experience marginalization due to their sexuality (Sullivan, 2003). The term queer has evolved, being repositioned as a term of pride and socio-political identity (Sandahl, 2003, as cited in Chappell, 2015). Queer challenges “normal” behavior ideals and resists the status quo (Warner, 1993). It is undefinable (Greteman, 2017) and embraces uncertainty and ambiguity in its foundation (Halperin, 1995; Sullivan, 2003). Moreover, queerness does not adopt a fundamental logic or a consistent set of characteristics (Jagose, 1996, p. 96). Still, it is adopted by individuals and groups who experience marginalization based on their sexual practices (Halperin, 1995).

Queer theory evolved throughout the 1980s and early 1990s, inspired by a combination of queer politics, philosophical theorizing of gender, sex, and bodies (Butler, 1990; Halperin, 1990; Sedgwick, 1990), and the rise of homophobia and the AIDS epidemic (as cited in Greteman, 2017). Queer theory is a “vague and indefinable set of practices and (political) positions” that is capable of challenging normative behavior, ways of knowing, and identities (Greteman, 2017, p. 43-44). Individuals often ask for a concrete definition of Queer, whether it means sexual orientation, gender, or something else. In response, we believe this quote sums it up nicely; “queer is by definition whatever is at odds with the normal, the legitimate, the dominant. There is nothing particular to which it necessarily refers” (Halperin, 1997, p. 62).

Queer theory challenges heteronormativity and the othering of homosexual identities (Steyn & Van Zyl, 2009). Heteronormativity is an ideology that promotes gender conventionality, heterosexuality, and family traditionalism as the preferred and standard way for individuals to experience their lives (Ingraham, 1996; Oswald et al., 2005). Heteronormativity presently and historically privileges cisgender men and women, heterosexuality, and nuclear families (i.e., two parents and children), which marginalizes and oppresses individuals who do not identify as members of these groups (Allen & Mensez, 2018). Both queer theory and critical disability studies overlap and challenge hegemonic constructs of normalcy and universal norms (Chappell, 2015; Sherry, 2004).

Application to Disability Social Work Practice

Social work has lingered in its contribution to gender and sexuality studies (Mulé, 2016). This lag risks the profession adopting and perpetuating antiquated discourses, theories, and perspectives, with potential implications for practice and further marginalization of communities (Mulé, 2016). The social work profession has often paralleled society’s moralizing, pathologizing, and criminalizing approaches to gender and sexually diverse communities (Mulé, 2016). For example, this is evident in the profession’s continued support of the Diagnostic and Statistical Manual of Mental Disorders (DSM), which has been detrimental to gender and sexually diverse people (Daley & Mulé, 2014; Westbrook & Schilt, 2014). For instance, the diagnosis for transgender people of all ages (i.e., Gender Dysphoria (G.D.) considers “inverted” gendered expressions as pathological, stigmatizing transgender people (Davy, 2015). Like social work, many professional programs neglect to educate students about queer theory and gender and sexually diverse populations (Bragg, 2020).

Sexual Citizenship Theory

According to Weeks (1998), sexuality is contingent, culturally specific, and often a relationship of related but separate elements of bodily potentials, desires, practices, concepts and beliefs, identities, and institutional forms. Sexual norms have hegemonic patterns, defined by excluding certain people and shaped by culturally and materially defined differences between class, age, ethnicity, nationality, and geography (Weeks, 1998).

The sexual citizen is a concept first defined by Weeks (1998) in his work on sexuality and queer theory. Sexual citizenship was an attempt to expand upon earlier notions of citizenship to make it more comprehensive and inclusive of sexuality. Discussion of citizenship is traditionally focused on civil, legal, political, and social concepts. Yet, in the context of sexual citizenship, citizenship is more broadly defined as empowerment, inclusion, belonging, equity, and justice (Weeks, 1998).

The term sexual citizen seems contradictory. Being sexual often signifies a private part of people’s lives and focuses on intimacy, including pleasure, pain, love, violence, power, and resistance (Weeks, 1998). Yet, citizenship is ordinarily a concept focused on an individual’s involvement in broader society. Operating in a wider society acknowledges and recognizes rights, entitlements, and responsibilities to fellow citizens and the community (Weeks, 1998). Hence, Weeks intertwines private and public in his understanding of sexual citizenship, making the private elements public and political (Weeks, 1998).

Sexual citizenship has gained prominence in disability and social work studies (Lee et al., 2018; Liddiard, 2018, Siebers, 2008; Wilkerson, 2002). Disability studies, in particular, recognize that silencing and denying disabled people sexual and reproductive rights have been greatly ignored within frameworks of legal rights and social integration (Shildrick, 2013). Disabled people remain largely excluded worldwide from enjoying equal control, access, and choice regarding their sexuality and sexual and reproductive rights (Rohleder et al., 2018). Nonetheless, a growing movement of disabled and non-disabled activists and theorists advocate for their sexual citizenship (Shildrick, 2013).

Shakespeare (2000) defines three dimensions that are necessary for achieving sexual citizenship for disabled people:

First, is a demand for control: we demand control over our bodies, over our feelings, and over our relationships. Second, is a demand for access: we demand access to representations, relationships, and public spaces. Third, is a demand for choice: we demand choices about identities, our lifestyles, our gender experiences (p. 165).

These three dimensions include more than sexual health and intimacy; they include important aspects of a person’s sexual well-being. Control, access, and choice (autonomy) are described within the context of sexuality but are broadened and inclusive of whole parts of the self. For example, having control is not only about being physical with another person but also incorporates feelings and relationships. Shakespeare (2000) states that the vision of sexuality for disabled people should not be focused entirely on sexual desire and physical intimacy but rather on identity, solidarity, rights, and respect. Sexual citizenship theory challenges the dominant discourse that sexual and reproductive health are applicable and important to only specific groups of people. Promoting sexual citizenship across the lifespan is one approach to alleviating some of the problematic conditions disabled people face to achieve positive sexual development and well-being in their lives (Bolin et al., 2018).

Application to Disability Social Work Practice

Sexual citizenship is applied in social work scholarship and literature to conceptualize practice approaches for disabled people (Bolin et al., 2018; Drummond & Brotman, 2014; Lee & Fenge, 2016). For instance, Lee and Fenge (2016) define sexual citizenship as a social work rights-based approach because sexual citizenship shifts the perception of sexual well-being to a positive one that prioritizes empowerment and the entitlement to full participation for disabled people. One of the practical approaches stressed in their article is for social workers to promote the right of disabled people to have access to information, services, and sex pertaining to their sexual and reproductive rights.

Consent and Consent Laws

Historically, consent has been defined as “no means no,” with much of the discussion centering on (presumably heterosexual and cisgender) girls and women using the term “no” to gatekeep their bodies from (presumably heterosexual and cisgender) boys and men (Gilbert, 2018). It was not until the 1990s that activists and scholars began a deeper conversation about the idea of affirmative consent, or “yes means yes” (Mitchell et al., 1996). This shift happened across the U.S. and Canada, with courts in the latter moving away from questions of “Did she say no?” and asking “Did she say yes?” However, this model still made major assumptions about the gender and sexuality of both the perpetrator and survivor (Plaxton, 2015).

General laws on the age of consent for sexual activity range from 16 in Canada (though with flexibility for those ages 12-15 who are close in age to one another) to 16 to 18 in most states and provinces in the U.S., Australia, the United Kingdom, and New Zealand (Gilbert, 2018). However, for disabled people, even being of a certain age may not be enough for them to be deemed as able to consent, particularly those with intellectual or developmental disabilities. Scholars have long named the tension between ensuring disabled people can engage in their sexuality and sexual experiences and protecting them from harm caused by others (Stavis, 1991). This tension is often seen in the creation of consent-related laws, which target disabled people as naturally asexual, infantilized, and incapable of consenting to sexual activity in any capacity (Medina-Rico et al., 2018). These laws often align with health providers, who may also not understand that sexuality and disability are mutually exclusive (Gougeon, 2009; Saxe & Flanagan, 2014; Suris et al., 1996).

How Consent is Taught (or not) to Disabled People

From a young age, most parents are navigating how to talk to their kids about owning their bodies, good touch versus bad touch, and introducing the topic of consent. In fact, the internet has hosted many lively discussions about whether children should be forced to hug relatives or if young children should be allowed to tell a parent(s) that they cannot touch their body. This emerging conversation continues to evolve because, as Alderson (1999) points out, “Until recently, obedience rather than autonomy has been expected of children” (pg. 38).

As difficult as these conversations around consent may be with children in general, it can be infinitely more complicated with young disabled children, particularly those with impairments or medical conditions that require ongoing medical intervention. For example, if a five-year-old tells their parent that they don’t want their doctor to touch them, how is the parent who may have had to schedule this appointment months ago, take off work, and figure out transit for their child to respond? Children are often told to let medical professionals touch their bodies and poke and prod them. Depending on the individual’s condition, they may sometimes be asked to do things in various stages of undressing away from their parents (Rooted in Rights, 2021). This experience of “having” to allow certain people to touch their bodies can create tension around consent in the future, especially regarding who is allowed to touch their bodies and whether or not they have the right to reject such touch.

For those disabled people who are institutionalized, they may be denied the ability to consent to certain activities based on the rules of the facilities in which they are housed and/or the bias of those working in these spaces (Young et al., 2012). There also are often contested issues around who can consent, not only when it comes to age but also mental capacity, with different jurisdictions, communities, and institutions defining mental capacity to consent in a multitude of different ways (Alderson, 1999), many of which are outdated and ableist (Harris, 2018). Ergo, it is a challenge to understand different consent laws in different areas, talk about consent in various contexts, and think about and disrupt how consent may have been violated by trusted adults in any given disabled individual’s life.

Sexuality Education in Schools

Sexuality education in the U.S. and Canada has historically been fraught and at the center of culture wars dialogue, as with many issues regarding sexuality and sexual identities. In the U.S., much of the sexuality education dialogue has centered around what should be taught to youth in schools, whether abstinence should be centered, and if the offering of medically accurate sexuality education is connected to an increase in the age of first sexual experience, the number of partners, transmission of sexually transmitted infections, unintended pregnancies, etc. According to SIECUS (2021), a US-based non-profit that focuses on “Sex Ed for Social Change,” 33 states (and Washington D.C.) mandate sexuality education. However, 34 states mandate an emphasis on abstinence whenever sexuality education or HIV education is provided, and only 16 states require information on condoms or contraception to be included. In Canada, while many urban areas may be seen as more progressive than in the U.S., a report by Action Canada for Sexual Health & Rights (ACSHR) (2019) found that most of the sexuality education information given to young people was outdated, not meeting international standards, not comprehensive, and taught by people who had a low level of comfort. This chapter will similarly address these two countries, despite having somewhat different politics and policies.

Sexuality Education and In/Exclusion of Queer Identities

For decades, the lack of queer-inclusive content in sexuality education programs has been an issue (McCarty-Caplan, 2013). The moving of sexuality education into the responsibility of the middle school and high school education in the 1980s included the goal of promoting heterosexuality and marriage while at the same time reducing pregnancies outside of wedlock (Moran, 2000). Although some areas attempt to ensure their modern sexuality education includes individuals of all sexual orientations, that sadly is not the case across the board.

In the U.S., only ten states have policies requiring affirming instruction regarding LGBTQ youth or discussing sexual health for LGBTQ youth (SIECUS, 2021). Conversely, eight states specifically call for discriminatory information about LGBTQ identities to be shared with students in sexuality education instruction (SIECUS, 2021). In Canada, many schools “outsource” their sexuality education courses to local organizations, many of whom are anti-choice groups offering “free sexual health courses” that not only center on abstinence as the only option but also include homophobic materials in their instruction (ACSHR, 2019). Ergo, while individuals living in more progressive or resourced areas (i.e., San Francisco, New York, Toronto) may have access to more LGBTQ-inclusive and affirming sexuality education, those living in more rural communities or areas with fewer resources are likely to not experience LGBTQ identities in sexuality education at best or be exposed to discriminatory (and inaccurate) information at worst.

Sexuality Education and Disabled Young People

Unfortunately, disabled youth are often not given access to the same sexuality education as their peers, despite being significantly more likely to be sexually active than their non-disabled counterparts (Horner-Johnson et al., 2021). Historically, less than 5% of disabled people could access sexuality education or counseling services that gave them the information and support they needed around sexuality (Szasz, 1991). While these numbers have improved over the past few decades, a more recent study found that access to sexuality education varied by type of disability or impairment, with only 25.0% of those who are disabled individuals with intellectual or developmental disabilities (IDD) being able to access such education, compared to 47.5% of their disabled peers without IDD (Barnard-Brak et al., 2014). For those disabled young people who are in pull-out learning spaces[2], many will never have access to sexuality education. In contrast, others in more mainstream settings may be told not to come to class on the day(s) when sexuality education will be offered or may not offer appropriate accommodations to engage with the material. Even when they can engage in sexuality education, disabled youth (and adults) are less likely to have access to information about sexual pleasure and may find their education is even more focused on pregnancy and STI prevention than the general population (Tepper, 2000; Turner & Crane, 2016).

It is important to note that the vast majority of the extant research looks at the sexuality education experiences of disabled young people and queer young people separately without pausing to explore the experiences of those who are both queer AND disabled. Tarasoff (2021) calls for a need for sexuality education that is inclusive and affirming of both marginalized groups while commending Horner-Johnson and colleagues (2021), whose recent study was one of the first to look at disability and among queer, trans, and nonbinary identities.

Moreover, despite a lack of sexuality education information given to disabled LGBTQ individuals, this indicates that they are no less sexually active than their heterosexual and non-disabled peers. Often, they may be more creative in defining sex and sexual activities. One study found that sexual and gender minorities are likely to use the skills they have gained in navigating ‘coming out’ with their identities to navigate ‘coming out’ as disabled and asking for their needs to be met by sexual partners (Kattari, 2015). Another study of disabled adults noted that disabled adults of all sexual orientations defined “sex” in a wide variety of ways, including activities from watching porn together to sexting, spanking to massage (Kattari & Turner, 2017), indicating the need for more robust types of sex education that go beyond the heterosexist and ableist norm of sexuality education being focused solely on pregnancy and STI prevention about penis in vagina intercourse.

Curricula and Those Providing It

Frequently, sexuality education courses are taught by health teachers, biology teachers, gym teachers, and others who are un- or under-prepared to educate on this content (ACSHR, 2019). Human service professionals working in school settings are also often lacking in knowledge about both issues related to sexuality and those related to disability. In both the U.S. and Canada, few social work programs have courses specifically on sexuality, with less on sexual orientation and even fewer having courses dedicated to disability (Ballan, 2008; Ogden et al., 2017). In psychology, a similarly low number of programs offer content on sexuality (Mollen et al., 2020) and disabilities, especially outside of psychiatric disabilities (Rosa et al., 2016). Content often focuses on abstinence, puberty, anatomy, STI information (mainly on prevention), condoms/birth control/contraception, relationship information (including marriage promotion in some states and provenance and healthy relationships in others), and sometimes consent (SIECUS, 2021). It is rare for most of this information to be inclusive across LGBTQ identities, except in the states that require it, despite affirming and inclusive information being tied to better mental health and sexual health outcomes for LGBTQ youth (GLSEN, 2015). Good news is on the horizon, however, with research delving into the type of sexuality education that is desired by/useful for disabled people (East & Orchard, 2014; Grieve et al., 2007; Schaafsma et al., 2015; Schaafsma et al., 2017), as well as LGBTQ individuals (Gowen & Winges-Yanez, 2014; Meadows, 2018), and even some on the ideal sexuality education for those who are both queer and disabled (Toft & Franklin, 2020).

Best Practices Both Personally and Professionally

Hopefully, as you read this chapter, you have recognized the importance of thinking about how you can adjust both your practice and personal life to be more inclusive and affirming of disabled individuals, especially those who are also LGBTQ or those exploring their sexuality. Below is some low-hanging fruit you can start with to make these important shifts. We also encourage you to connect with other social workers, with disabled friends, family, colleagues, and community members, and queer folks as well, so that you make these changes not only in response to this chapter but also in a way that is in an ongoing, culturally responsive way that notes the consistently shifting needs of both disabled and queer individuals.

• Create accessible spaces from intake forms to parking lots to physical spaces to events (and ensure these are all communicated on your website and event pages). This may include having sensory-friendly spaces, low-scent spaces, encouraging partners or caregivers to accompany attendees or clients, etc., and having wheelchair-accessible buildings, chairs that are friendly for all bodies, etc.
• Pay queer and disabled folks to consult with you about your practice, strategic plans, etc. We often wait until a problem has arisen before we try to reverse engineer making something more inclusive. Instead, consult with community individuals from the get-go, and acknowledge their expertise and labor by paying them for their support.
• Remember that sexual orientation and disability status are not mutually exclusive, nor are all disabled people either hypersexual or asexual. Instead, ask open-ended questions, express curiosity rather than surprise (“You’ve said your queerness is directly related to your cripness – I’m curious to hear more!”), and be ready to do extra research on the back end so as not to make your clients (or friends, family, colleagues, or community members) do the work of educating you on these issues.
• Consume media created by queer disabled people. Some examples include Sins Invalid, Crutches & Spice, Leah Lakshmi Piepzna-Samarasinha, the Queer Sex Ed podcast, Disability After Dark podcast, and many more! Share these posts, books, clips, videos, podcasts, and more with your colleagues and community.
• Work on dismantling ableism in yourself, even if it is internalized ableism. You do not have to do this on your own – find a community to support you in this!
• Get connected to Queer affirming, anti-ableist practitioners in your community so you can refer to other social workers, health care providers, organizations, and more that will also support your queer disabled clients.

Conclusion

Throughout this chapter, we have explored many of the experiences, challenges, and unique resilience opportunities that happen for disabled and chronically ill individuals, both for those who are also LGBTQ and those wanting to experience and explore their sexualities for the first time. Undergirded in queer and crip theories and enacted on our bodies and minds by local, state, federal, and even organizational policies, this information is critical for social workers to understand, acknowledge, and disrupt ongoing systems of ableism and queerphobia. Social workers and other human service professionals should be prepared to connect clients and their partners, families, and other health team members to Queer and disability-affirming resources, consider offering disability-inclusive sex education and sex therapy, and re-create spaces (physical, virtual, and conceptual) that are inclusive of disabled individuals across all sexualities, and work on dismantling ableism and homophobia in all aspects of both their personal and professional lives.

Case Study

Dacia, a 32-year-old Black cisgender queer femme, comes for an intake to your private practice. On your intake form, she notes her pronouns are she/her. She is disabled and neurodivergent, is in a new relationship, and presents concerns, including navigating sexual activity with her new partner. She is a high school history teacher, lives in a rented condo with her dog and two cats, and enjoys cooking, cross-stitching, and reality T.V. shows. She notes that she has been in therapy previously to get her diagnosis but never really felt comfortable with her previous therapy encounters. She certainly didn’t discuss sexual orientation or sexuality issues with previous therapists.

Pre-Engagement Questions:

• What do you need to consider before Dacia arrives at her first appointment?
• How might your identities come into play? How can you navigate them?
• What potential research or outreach do you need to engage in before your first session?
• How else might you best prepare for meeting Dacia for the first time?
• What other access should you consider?

Engagement

Dacia comes into your office for her first appointment. While sitting in the waiting room, she looks around at the images on your wall and the books on the shelves. You notice that she spends extra time looking at the queer people of color artwork you have from the Repeal Hyde Amendment Art Project and the Next World Tarot collection. You come out to meet her, and she points to them, remarking that she has never had a therapist with art that looked like her. As she wheels her rollator into your office, she notes appreciation for having information about parking, elevators, and the scent-free space in your confirmation email. She chooses the most comfortable furniture for her body and looks around a bit, clearly looking for something. When she does not see it, she reaches for her purse and asks if it is okay to use stimming items. You let her know that is fine and start your conversation. Throughout it, you spend a lot of time asking questions, including about the language she uses (identity first), how she identifies her disabilities (she has EDS and chronic pain, anxiety, and depression, and is autistic), her other identities (queer dyke, Black femme, a daughter and sister, an educator, cisgender, and middle class), and her concerns.

While Dacia seems relatively comfortable with her disabled and neurodivergent identity, she shares that her family has not always accepted her queer identity or being autistic. However, they are more supportive of her EDS and chronic pain. Dacia shares a bit about the challenges of holding multiple oppressed identities and often choosing just one at any given moment. It also seems that her relationship with her new partner, Andi, a white Jewish masculine-of-center nonbinary queer person, is going well. Still, she is unsure how to start a conversation about sex. As you talk, Dacia shares that she has sensory issues with sounds, smells, and textures that worry her about sex with Andi. In addition, she has concerns about navigating EDS dislocation and chronic pain. Dacia has had sex before but spent most of those instances in what sounds like a dissociative state and uses phrases like “just to get through it” or “once it was over.” She has not had a queer partner before, and Andi is the first person who has been willing to take their time with her to make sure her needs are met, but she does not know how to start. As you move into your second session, you share your thoughts and even some resources that you have found with her and engage your positionality and how your own identities may impact your intersections.

• What questions might you ask Dacia about how she wants to show up, her communication style, etc.?
• How would you ground your work with Dacia using an intersectional, anti-oppressive, and culturally responsive approach?
• What would you consider sharing with Dacia about yourself, your identities, and your therapy style?
• What resources might you use, either for yourself or share with Dacia?

Assessment

As you move forward in working with Dacia and helping her feel more comfortable and confident in figuring out what some of her sexuality needs and supports are and how she might communicate them with Andi, consider some of the following questions:

• In addition to the specific issue Dacia shared about communication with Andi, what other issues such as race, gender, disability, and previous experiences may intersect with the issue?
• What approach(es) do you think is/are best to use moving forward with Dacia? Why?
• What circles of support could you encourage Dacia to connect with or reach out to? What might be some barriers here?
• How will you ensure Dacia’s narrative and point of view are centered?

Intervention

Once you have both agreed on the “intervention” approach, consider reflecting on the following questions:

• How will you be assessing whether this process is working for Dacia? How can the two of you communicate that? If it is not working, how can it be tweaked?
• Are there structural or organizational change issues that need to be addressed? If so, what are they, and how will you, Dacia, or both of you engage them?
• How will you embody and operationalize “nothing about us without us” as an undergirding of this work?
• What tools might you bring to your sessions, and how will they support the process? Examples include (but are not limited to!) worksheets, role plays, educational adult movies, journaling, etc.

Termination

As you move toward the end of your time together with Dacia, please consider the following:

• Who will initiate termination? What if the other party disagrees?
• How will you ensure Dacia has the ongoing support to continue being empowered around her sexuality and sexual experiences?
• Do you have a plan to follow up? If so, what does it look like? Will Dacia be able to reach out to you again if she needs to? What if she and Andi desire a relationship therapist – do you have BIPOC and queer-affirming accessible recommendations?

Evaluation

Finally, you have been doing self-reflection and evaluation throughout this process with Dacia. When you think about evaluation:

• Was it explicit, implicit, or both?
• How did you ensure Dacia was a part of the ongoing evaluative process and that her thoughts were included?
• What measures did you use to evaluate the process? How did you know that your time together was “successful?”
• What did you do to ensure that your measures and definitions of success were anti-oppressive and intersectional?
• How would you improve the evaluative process with future clients?

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