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Case Vignette (Revalidating Sexuality)

Linda, age 50, and Peter, age 55, had been married for 27 years. They were referred to me after a follow-up visit with the physiotherapist of the rehabilitation center where Linda had been a patient. Linda was experiencing continuous chronic back pain and fatigue secondary to spinal stenosis. Due to Lindas increasing pain over the preceding year, the couple had stopped having sex, hoping that surgery to correct the stenosis and the subsequent rehabilitation would allow them to resume sexual activity. However, when the couple attempted to have sex, they discovered that Linda had both dyspareunia and back pain. Peter had never had an orgasm during partnered sex without penetration, and so the couple continued to have intercourse

—although the frequency of sexual activity declined to once every 3 or 4 months. As 404

they discussed with the physiotherapist, they found that this was "not enough" at their ages, but they did not know how to change this pattern, and they were referred to me. In our meetings, I found that they had a warm relationship but that they were not really able to communicate about sexuality. When I told them that I could understand their difficulty and asked whether they had ever tried alternative, nonpenetration-based ways to have sex, a long silence occurred during which they looked at each other in an embarrassed but also cheerful way. In the following three sessions, we explored their options. The couple learned to revalidate their sexuality by focusing on what was still possible instead of on what was no longer achievable.

In order to help couples determine what is still possible sexually, it may be necessary in the course of treatment to:

1\. Provide psychoeducation about how this illness or disability may affect sexual functioning and sexual experience (e.g., how diabetic neuropathy may influence ED; how post-breast cancer aromatase inhibitor treatment may affect vaginal atrophy and induce dyspareunia).

2\. Address negative attitudes (e.g., discuss body image issues with patients with a stoma).

3\. Help couples dare to take up sexuality again (e.g., invite partners to "experiment"

with touching the "breast area" after a mastectomy).

4\. Explore how the physical limitations due to the illness can be overcome (e.g., invite partners to "explore" how the vagina reacts after a hysterectomy).

5\. Be attentive and seek solutions for relational tensions (e.g., initiate a frank and open discussion about the feelings of loneliness, shame, anger, and

disappointment and discuss how they can cope with these (Sipski & Alexander, 1997).

The therapist can provide an overview of the inhibiting factors on the physical, psychological, and practical levels and can discuss with the patient and his or her partner which factors are modifiable (e.g., feelings of attractiveness, anxiety) and which are not (e.g., damage to nerves, movement restrictions).

**PRINCIPLES OF STEPPED CARE**

In general, when treating the sexual concerns of patients with chronic illness and their partners, it is important to follow the principles of "stepped care" (Van Lunsen et al., 2004). These principles stipulate that the least intensive treatment (both in terms of effort and costs) of which sufficient benefit is expected should be chosen (Van Lunsen et al., 2004). In a first step, patients and/or couples are provided with information and tools that will allow them to come up with their own solutions to their sexual problems.

This step can strengthen their self-esteem and avoid overdependence on professional 405

care (Weijmar Schultz, Incrocci, Weijenborg, van de Wiel, & Gianotten, 2004). In the context of illness and sexuality, this means providing information regarding the sexual consequences of the disease and its treatment(s) and about sexual aids and medical devices that might be helpful. In these consultations, attention should be given to the attitudes and expectations that the individual and his or her partner have about sexuality. Patients and partners should be advised that a return to the "normal" situation before the disease is not always possible. How they can and will handle these changes should be discussed, again drawing on the couples own problem-solving and adaptive capacities. This process of acceptance can be furthered through contact with other patients, either informally or in actual or virtual groups (e.g., Kroll & Klein, 1992; Sipski

& Alexander, 1997; Blackburn, 2002; Roszler & Rice, 2007). When these basic interventions are insufficient, a couple may need more specialized help. In a second step, consultations are focused on providing solutions for the specific problem of a patient or couple (e.g., use of a lubricant, specific sexual techniques, medications). The suggestions in this second step are based on the needs identified by a comprehensive sexual history taking. Finally, when the previous interventions are inadequate, more intensive sex and/or couple therapy may be indicated.

**MODIFICATIONS TO SEX THERAPY**

Patients with chronic illness and their partners may suffer from the same sexual dysfunctions that occur in the general population. When this is the case, sex therapy in the context of chronic illness does not significantly differ from its practice in "healthy"

patients. However, special attention should be paid to two important points. First, in patients with chronic illness, multidisciplinary discussion and collaboration is indispensable. The basis for efficient multidisciplinary cooperation is that all involved caregivers know what to expect from each other (Bergeron, Meana, Binik & Khalifé, 2010). It is often helpful to discuss the importance of a multidisciplinary approach with patients and partners so that they understand and embrace its usefulness (Weijmar Schultz et al., 2004). A comprehensive sexual history is not only a necessary condition but also an instrument to help patients and partners to appreciate the interdependence of various factors and thus the need for a multidisciplinary approach. Second, because illness makes sexuality less "easy" or "straightforward," some modifications of standard sex therapy practices may be necessary. For example, it may be necessary to give direct suggestions for overcoming practical problems (e.g., the use of pillows for positioning or sexual toys and aids to intensify stimulation).

Sensate focus exercises used in classic sex therapy (Masters & Johnson, 1970), supplemented with elements from systemic and cognitive-behavioral therapy, are central to the treatment of sexual problems for people with chronic illness. The goal of these homework assignments is to learn to refocus on the experience of touch and bodily sensations and to again dare to explore the body, which has changed and/or reacts differently due to the disease. These exercises often have an anxiety-reducing 406

effect and re-create the possibility of having positive sexual experiences (Van Lunsen et al., 2004). In psychotherapeutic consultations, the focus is often on changing the cognitions that maintain the negative feelings and behavior surrounding the sexual difficulties. Finally, there should be attention given to the relationship and restoring a balance between care and autonomy, intimacy and connectedness.

**Medical/Technical Aspects**

In the context of chronic illness, the impact of physical factors is often either underestimated or overestimated. Nevertheless, medical interventions are an important element in treating the sexual dysfunctions and problems of patients with chronic illness. Many of the same options for medical treatment of sexual dysfunction in otherwise healthy men and women can be used with people suffering from chronic illness (e.g., phosphodiesterase-5 inhibitors, intracavernosal injections or an erection prosthesis implant for ED). However, it is also important to be knowledgeable about

"technical" tools and to be able to give practical advice such as discussing different positions (e.g., due to restricted movement), how to limit depth of penetration (e.g., after a hysterectomy), and when to attempt intercourse (e.g., in order to avoiding extreme fatigue). In cases in which problems with posture and movement occur, advice can be given regarding learning to make ergonomic transfers (e.g., use of a bed ladder that can help turning in bed) and on positions that facilitate sex; for example, after total hip replacement surgery, there is a risk of dislocating the hip when the legs are spread, so the couple may consider using a different position (e.g., the partner with the hip replacement lying on her side and being approached behind). In cases of neurological disturbances, often the area just above the level of the lesion becomes more sensitive to stimulation, so patients may be encouraged to discover these new erogenous zones. For problems with arousal based on sensory deficits or when sexual arousal sensation is below a certain threshold, the use of a vibrator may be proposed. In the case of incontinence, various methods for collecting can be talked about, such as specific absorbent material in underwear or for the bed.

**CASE DISCUSSIONS**

**Case 1**

Martin, age 34, and his wife, Kathleen, age 32, had two daughters, ages 5 and 3 years. At the age of 32, Martin was diagnosed with MS. After the initial shock of the diagnosis, the couple decided to seek information about the impact, progress, and prognosis of the disease, including its effect on sexuality. They consulted with a specialist nurse who referred the couple for sex therapy. In the first session, we discussed their premorbid level of sexuality, and I learned that sexuality had always been very important and 407

satisfying for both of them. This helped to explain their interest in sex therapy, as they were not "willing to completely lose this aspect of their relationship." During the initial session, I provided psychoeducation on the possible direct impact of MS on sexual functioning (e.g., less and/or changed sensibility of body parts, fatigue, and in the long run decreased muscle strength, tremor, spasms, and eventual incontinence); the psychological burden (e.g., coping, anxiety, uncertainty about ones own body, roles), and we discussed the unpredictable and uncertain outcomes of exacerbations of the disease and how this might affect both partners differently.

Indeed, as Martin was losing his personal health, Kathleen was losing her "healthy partner" in a very busy period of life (building a family and a career). Because there were not yet actual problems, we ended the session by discussing the necessity of courage and creativity to cope with potential problems in the future. Once or twice a year, the couple came for follow-up sessions in order to share their emotional uncertainties, to discuss the changes they experienced, and to seek help in finding solutions. During the first 6

years, there were not too many problems, and they were able to overcome most of the issues they encountered, sometimes with and sometimes without therapy. For example, Martin frequently suffered from fatigue and muscle pain during sex. They found they could minimize these problems by first taking a hot shower together in the morning.

When the time came that the number of sexual positions and activities had to be limited, the couple was encouraged to continue to experiment and discover what worked for them.

When Martin was almost 40 years old, he began to suffer from ED resulting from the progression of the disease and the use of muscle relaxants and corticosteroids. While I encouraged the couple to find nonpenetrative ways to enjoy and share physical intimacy, Martin became depressed and wanted Kathleen to leave him as he could "no longer be her man." Kathleens initial reaction was to reassure Martin and to deny the importance of penetration. After some discussion she was able to admit that she also missed having intercourse. As a result, I referred them to a urologist who prescribed a PDE5 inhibitor, which was very helpful.

When Martin was 42, the couple made a new appointment because Martins physical condition had progressively deteriorated (e.g., walking difficulties, muscle spasms, incontinence). As a result, he had to leave his job, which he loved very much. Martin required more physical care from Kathleen and others, which made him feel insecure about his future and affected his self-confidence about his role as a breadwinner, good husband, father, and lover. As a result, Martin became depressed, and the antidepressant he had been prescribed affected his ability to orgasm.

Kathleen said that although she was taking up the care of her husband with love, she was having a hard time. The combination of a full-time job with caring for her husband and two teenage daughters left only a little time for herself. Moreover, she found it difficult to continue to see Martin as an attractive sexual partner. Martin confirmed that Kathleen was withdrawing from the sexual relationship and that sometimes he found himself snapping at her for no apparent reason. The couple began quarrelling more frequently, and both felt that they had started to lose each other and grow apart. The sexual component of the relationship was temporarily put aside, and the focus was 408

redirected to their relationship.

I saw Martin and Kathleen individually for two sessions each. During the following conjoint session, I facilitated an open discussion of the uncertainties and difficulties both partners were confronted with. These sessions enabled the couple to create a new

"we"-ness. Kathleen was able to negotiate some personal time, which she spent with her friends. Although Martin was afraid of losing his wife to someone else, he actually felt loved by her again. The couple resumed being sexually intimate—being naked together, kissing, caressing, and sexually stimulating each other without penetration. They reported great satisfaction with their new connection.

**Case 2**

Steve and Ann were, respectively, 58 and 56 years old when they entered my consultation room for the first time. He was a teacher in a primary school for children with learning disabilities. He was experiencing burnout and was looking forward to early retirement at the age of 60. Ann was working in the administration of a big company, where she was responsible for several projects, a job that she still enjoyed very much. They had been married for 30 years and had two adult sons, one of whom still lived at home. When I asked them with what I could help them and who took the initiative to make an appointment, Steve immediately jumped in and shared his frustration about the lack of sex in their relationship. Ann looked at him, smiled at me, but did not otherwise react to what he said. I learned that since the first time they had sex with each other—more than 30 years ago—it did not work well between them and that this never changed. Steve was quite frustrated about that aspect of their relationship and was especially angry about the fact that Ann had never been willing to "experiment"

more to find a solution. Ann grew up with a very negative idea about sex and could never find a positive meaning connected to sexuality for herself. On the other hand, Steve placed great value on sex, as his idolized father had been considered a "ladies

man." Earlier in their marriage, Ann acquiesced to sex in an effort to be a good wife.

However, she never fully participated in or enjoyed the sex they had. After the children were born, the frequency of sex declined to four or five times per year. As Ann aged, intercourse became painful due to a lack of genital (and mental) excitement. As a consequence, her willingness to allow Steve to have sex with her further diminished.

This made him even more reproachful and angry at her. Ann felt humiliated by the extramarital affairs Steve had during their marriage, something he did not deny and justified by "being a healthy man who got elsewhere what he did not get at home: love and sex."

The reason this couple came to therapy now was that Ann had been diagnosed with and treated for breast cancer. When I first met them, she was completely recovered from the illness and the necessary treatments (i.e., lumpectomy and chemotherapy). Steve had not pushed for sex during her treatment but now wanted to resume and even increase the frequency of their sexual interactions. In the session, Ann identified strongly as a breast cancer survivor. She said that her illness had caused her to confront the finiteness 409

of life and made her decide that she would no longer do anything she did not want to do. As a consequence, she stopped agreeing to have sex with Steve, and that was frustrating him even more. In the five sessions I had with them, I tried to have them listen to each others perspectives on their marriage, as well as their sexual relationship.

However, their animosity was so great that they were not willing to listen to the others perspective. Both Ann and Steve felt such resentment and pain regarding their failing relationship that I was not able to discuss any sexual issue or attempt to make a change in that respect. After the fifth session, Steve decided to stop the therapy as "nothing was coming out of it in terms of sexuality." I had the impression that Ann was happy that nothing was or had to be changed in terms of sexuality. Because divorce was not an option due to financial issues, I suppose that they are still "living together apart."

This case illustrates how the premorbid level of sexual functioning is an important factor in determining what is possible after an illness and also how an illness can be used as a reasonable alibi to stop "unsatisfying" sex.

**CONCLUSIONS**

Despite the growing focus on evidence-based sexology, the scientific evidence for the effectiveness of sex-therapeutic approaches to sexual dysfunction in general—and certainly in the context of chronic diseases—is very limited (see Rowland, 2007, and Basson et al., 2010, for reviews). Nevertheless, as patients with chronic illness are living longer and desiring care that is directed not only at treating the illness but also improving quality of life, addressing the sexual concerns of patients with chronic illnesses and their partners will be increasingly necessary and important. At present, the conceptual model of interacting physical, psychological, and relational factors could and should guide treatment.

In this era of sexual medicine, it seems reasonable to recommend the further development of "medical sexology" or "rehabilitation sexology," in which sex therapists play a central educational, caring, or coordinating role. After all, intimacy and sexuality between partners can be an important source of support in times of emergency, as they may offer comfort, provide confirmation that someone is lovable, be an adequate remedy for pain, facilitate relaxation, and provide a way to cope with difficult and confusing emotions (Gianotten et al., 2008). These are all good reasons to restore sexuality as soon as possible in relationships that are already under pressure due to nonsexual factors.

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**CHAPTER 21**

Sexuality and Disability

A Disability-Affirmative Approach to Sex Therapy

Linda R. Mona, Maggie L. Syme, and Rebecca P. Cameron

**M** ona and her coauthors exhort sex therapists to increase their level of "disability-related cultural competence" because "people with disabilities have become the largest minority group in the world." Viewing disability as a cultural issue challenges the traditional medical approach, which has conceptualized it as a condition that exists within an individual—that is, the problem is the dis-abled body. In this chapter, disability is framed as the product of an individual impairment interacting with the limitations of the social and physical environment.

Effective treatment of sexual problems among people with disabilities will therefore target both the individual and the environment. Physical factors associated with sexually related disability may include pain, discomfort, reduced sensory response, and limited mobility. Sex toys and other assistive devices might be useful in overcoming these limitations. Socioenvironmental factors that need to be challenged in therapy include ableist models of beauty or societal expectations of asexuality in the disabled. Cooperation with other health care providers will likely be necessary. Above all, Mona and her colleagues challenge us to view sexual pleasure as a universal right, not a privilege of the able-bodied.

**Linda R. Mona, PhD,** is a licensed clinical psychologist who serves as the Director of Psychology Postdoctoral Training at the VA Long Beach Healthcare System. Her research and clinical work focuses on providing sexual health education and psychotherapy services for people with disabilities. Dr. Mona has received numerous nationally based awards for her work focusing on sexuality and disability, in addition to publishing over 50 articles in academic-related publications and delivering over 100 workshops and seminars on this topic. She received her doctorate in Clinical Psychology from Georgia State University in 1998.

**Maggie L. Syme, PhD, MPH,** is a Research Assistant Professor at San Diego State University. Her research examines older adult sexuality and focuses on sexual consent capacity in an aging population and sexual well-being across the lifespan. She received her doctorate in Counseling Psychology from the University of Kansas in 2009 and her masters in Public Health from San Diego State University in 2012.

**Rebecca P. Cameron, PhD,** is Professor of Psychology at California State University, Sacramento, and a licensed psychologist in California. Her research and scholarly interests include the relationships of stress and social support to psychological, physical, and sexual well-being among diverse populations. She received her doctorate in Clinical Psychology from Kent State University in 1997.

People with disabilities (PWD) have become the largest minority group in the world, with the number of PWD increasing to approximately 10% of the worlds population (World Health Organization [WHO], 2011). Thus PWD are no longer a specialty population of care but instead a group of clients to whom clinicians are likely already providing services. Over the past decade, the experience of disability has begun to be conceptualized as more than a medical condition. Clinicians now readily see disability as a multicultural variable important in the assessment and treatment of sexual health 413

issues. Understanding disability as a minority experience invites clinicians to utilize a cultural strengths-based model for working with PWD.

As this shift in perspective occurs around disability, people living with impairments are increasingly understood to be limited by social and environmental constraints that interact with their individual characteristics—physical, mental, or psychiatric conditions

—to produce disablement (WHO, 2011; National Institute on Disability and Rehabilitation Research [NIDRR], 1999). This socioecological view values person-centered interactions and calls for changes to the traditional approach to diagnosis, assessment, and treatment planning in sex therapy.

The prevailing view of sexuality in our society has been limited, dominated by a heterocentric, ableist definition that best parallels a medical model of disability (Olkin, 1999). A more expansive definition of sexuality that includes disability-relevant variations in sexual expression and incorporates a broader range of sensual experience is needed. In addition, any conceptualization of sexuality among PWD should incorporate an inclusive understanding of the intersection of multiple identities relevant to PWD

(e.g., addressing the experiences of people of color; lesbian, gay, bisexual, and transgender [LGBT] individuals). A diversity framework provides a cultural lens through which to view sexuality for PWD and their families, partners, and caregivers (Higgins, 2010) and encourages those providing services for PWD to move beyond difference to create an atmosphere of inclusion.

Providers may feel some trepidation about treating PWD, as it is common to question existing skills in novel situations. It is important for sexual health clinicians to keep in mind that the nature of their work necessitates tolerance for discomfort and the ability to address topics that may be experienced as taboo. Increasing ones level of disability-related cultural competence is crucial for successful treatment outcomes with PWD. This chapter addresses the experiences of PWD and provides strategies that clinicians can use in working with their clients with disabilities.

**CULTURE OF DISABILITY**

Disability has historically been represented variously as a moral consequence, a source of shame, a medical anomaly, or a tragic condition associated with the need for rehabilitation. As interpretations of disability have evolved, a medical and eventually sociomedical–rehabilitative viewpoint emerged (Mona, Cameron, & Fuentes, 2006).

Both of these approaches locate disability within the individual, and both regard the disabling condition as an affliction that separates the PWD from "normal" functioning.

In contrast, the social model of disability emphasizes the strengths of PWD (e.g., humor, acceptance of variation, a matter-of-fact orientation toward assistance, tolerance for unpredictability and ambiguity, a flexible, adaptive approach to tasks; Gill, 1995) and identifies the physical and social barriers that obstruct PWDs ability to thrive.

In 1999, the NIDRRs new paradigm of disability was introduced, which attempts to bridge both individual-level and environmental-level conceptualizations of disability 414

(NIDDR, 1999) by framing disability as the product of impairment possessed by the individual interacting with the limitations of the environment. Accordingly, there has been a shift toward viewing PWD as persons existing in interpersonal, social, political, and environmental contexts that vary in how much they enable or disable people with widely variable functional statuses (Mona et al., 2006). By considering multiple levels, clinicians become more effective in identifying treatment foci, in advocating for and empowering clients, and in engaging the clients strengths in the treatment process.

Once we begin to consider disability from a multiplicity of perspectives, both the importance and complexity of sexual expression for PWD become more visible. Sexual expression need not be defined by sexual majority or nondisabled norms. Challenges facing PWD in achieving sexual expression are no longer purely a function of medical condition, and goals for sexual expression become more open to creative discovery rather than convention. Importantly, when the experiences of PWD are viewed from the perspective of healthy functioning and resilience, sexual expression begins to be seen as a right versus a privilege and barriers to sexual expression crystallize as problems rather than natural, expected sequelae of individual inadequacy.

Case Vignette

Consider Don and Jodi, a heterosexual couple in their 40s, who had a creative, nontraditional sexual script. Jodi, who had lived with cerebral palsy since birth, met Don, a nondisabled man, while on a cruise 7 years before. Don described their sex life as "different and yet very satisfying." Before meeting Jodi, Don had experienced sexual interactions only with nondisabled women. Early in their sexual relationship, they found that engaging in penile–vaginal intercourse was difficult for Jodi due to significant leg muscle spasms that at times prevented her from opening up her pelvic area. After exploring alternative positions, the couple decided to shift their focus away from intercourse to other sexual activities. To gain support and information, they consulted a sex therapist to address adaptive sexual techniques. The therapist challenged the couples beliefs about penile–vaginal intercourse being the only

"grand finale" activity and focused them on creating non-penile–vaginal intercourse activities, such as vaginal penetration with fingers or sexual toys, in positions that lessened Jodis leg spasms. Also, they experimented with oral sexual activity, with Jodi remaining in a sitting position while she provided oral and manual stimulation for Don. They began to focus on the fun and creative aspect of enhancing their sexual repertoire and were able to mourn the loss of their prior sexual expectations.

Don and Jodi continued experimenting with their sexual script by using positioning cushions and massage to decrease the potential of Jodis leg spasms. These mutually pleasing intimate experiences helped increase and maintain the couples sexual well-being.

**Sexual Health Care**

Accessing quality sexual health care is difficult for many PWD. Given the multifaceted 415

needs of PWD, the emphasis has been on the utility of interdisciplinary care (Collins, Hewson, Munger, & Wade, 2010; Walker, 2008). However, sexual health care and sex therapy are often specialty services that require an outside referral. Sexual health clinicians are uniquely positioned to provide care to PWD, as issues of sexuality and sexual activity for PWD are often overlooked by medical providers, due in part to discomfort (Rubin, 2005; Walker, 2008).

Additional challenges to quality care include environmental and structural limitations that impede access to sexual and reproductive health care (e.g., pap smears, colorectal and prostate exams, labor and delivery services) and attitudinal and informational barriers, all of which may lead to misconceptions and insensitivities about patient needs (Prilleltensky, 2003; Rubin, 2005; Schopp, Sanford, Hagglund, Gay, & Coatney, 2002). Also, the prototypical 15-minute appointment may not be appropriate for PWD, as they may require more time to undress for an exam or additional time during the appointment to accommodate necessary changes in positioning to alleviate pain (Piotrowski & Snell, 2007). Advocacy for appropriate and timely sexual health care may be a key role for sexual health clinicians, and this can be addressed by researching disability-informed resources in the local health care system, providing that information to PWD, empowering clients to advocate for their own care, and educating providers on improving accessibility to clinical settings (e.g., making architectural modifications, repositioning furniture, making materials available in a variety of formats).

**DIAGNOSTIC AND ASSESSMENT CONSIDERATIONS**

**Diagnostic Considerations**

The clinician does not diagnose in a cultural vacuum but in a society in which PWD are often marginalized, thought of as asexual, and otherwise stigmatized within a culture that is highly ableist about sexuality. Sexual health care is dominated by the biomedical model, which results in diagnostic categories that are based on deficits in the sexual response cycle (Olkin, 1999). Clients with disabilities may experience changes in the sexual response cycle; these changes may be disability-linked or independent of disability, and they may or may not be appropriate targets of treatment. The physiological deficits inherent in a specific disability may overshadow key psychosexual and relationship-oriented symptoms that need to be addressed. Clinicians diagnose sexual disorders for PWD in order to assist in the pursuit of interventions that may improve quality of life (e.g., designating an issue as worthy of clinical attention rather than an expected consequence of disability), but we need to exercise caution to avoid misdiagnosis, overdiagnosis, and overpathologizing.

**DSM-5**

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When utilizing the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5; American Psychiatric Association, 2013) for diagnosis of sexual disorders, keep in mind that this calls for a careful attention to symptoms in PWD that may be either related to a specific disability—not necessarily a sexual disorder—or due to societal assumptions about PWD. For example, the new diagnostic categories related to lack of interest in sexual activities—both female sexual interest/arousal disorder and male hypoactive sexual desire disorder—are based on symptoms (low sexual desire) that are commonly attributed to PWD due to societal myths that they are asexual and lack sexual desire (Olkin, 1999). Furthermore, heightened awareness of negative sexual stereotypes about PWD in women with disabilities (WWD) has been linked to low sexual desire (Nosek, Howland, Rintala, Young, & Chanpong, 2001). Thus clinicians need to consider the impact of biases about sexuality in PWD in order to avoid misunderstanding and misdiagnosis.

Of note, the current criteria for the sexual disorders in DSM-5 incorporate consideration of medical contributions, which do not specifically delineate but would include disabilities. Although the sexual disorders do not specifically include medical specifiers, each sexual disorder describes the importance of taking into account medical contributions to symptoms (e.g., sexual pain, low desire), which may be particularly important when diagnosing PWD. Clinicians should also recognize that PWD may not be best served by emphasizing erection/penetration/orgasm-focused sexual activities.

Attending to the cultural and contextual situations in which sexual symptoms are manifested is key.

**Assessment Considerations**

**Approach**

In assessing sexual difficulties among PWD, clinicians need to attend to an array of factors beyond symptomatology or diagnosis. We also need to be mindful of our own potential for bias toward negative or dismissive attitudes about sexuality of PWD that can arise from a cultural milieu that stigmatizes and often infantilizes PWD.

Maintaining an empowering, sex-positive stance will help to build rapport and guide assessment toward sources of resilience and creativity that may aid treatment efforts.

**Tools**

Clinical tools specifically for assessment of sexuality among PWD have not been well-developed. However, there are tools that can be adapted and utilized to facilitate a thorough clinical history, presenting concerns, and relevant contextual influences that provide a comprehensive conceptualization of sexuality for the client with a disability.

Zeiss, Zeiss, and Davies (1999) offer a model of interview-based assessment of sexual functioning for older adults, expanded on by Mona and colleagues (2010). This model 417

lends itself well to adaptation for use with PWD due to its comprehensiveness and sensitivity to diversity factors and to the ways in which these intersect with sexual concerns. Zeiss and colleagues (1999) emphasize creating an alliance through sensitivity to the clients comfort and readiness to discuss sexual concerns. They provide a framework that includes an in-depth approach to gathering background information, sexual functioning across the sexual response cycle, and relevant beliefs, goals, and behaviors. Traditional existing measures for sexual functioning may be useful in the assessment process with PWD; however, the clinician should be mindful of the population the measure was developed for, the existing norms available, and inherent biases that may exist in these measures. For example, the Female Sexual Functioning Index (FSFI; Rosen et al., 2000) assesses several areas of functioning (desire, arousal, lubrication, orgasm, satisfaction, and pain) with a clinical cutoff suggested to be indicative of dysfunction. However, it was normed on nondisabled women, and though it provides very useful information about potential sexual difficulties, using the clinical cutoff for diagnostic purposes should be approached with caution, as scores may be inflated due to symptoms that can be related to a physical or sensory disability (e.g., inability to orgasm, sexual pain, low desire).

**Content**

When conducting a comprehensive clinical interview, clinicians should consider the unique physiological, behavioral, cognitive, psychological, sociorelational, and cultural aspects of sexuality and intimacy to form a comprehensive conceptualization of sexual health and well-being of PWD. The following sections discuss these areas, providing a foundation for understanding of key issues of sexuality for PWD and informing the clinical interview.

PHYSIOLOGICAL FACTORS

Although the physiological nature of a persons disability is relevant to her or his sexual experiences, it is important to note that its impact is not essentially negative and that it does not inherently inhibit the potential for sexual enjoyment (Chance, 2002). The willingness of PWD to look beyond traditional cultural emphases on heterosexual penile–vaginal intercourse and instead focus on intimacy as mutual pleasure and enjoyment allows more PWD to experience thriving sexual lives, in the context of any challenges in sexual functioning that may occur secondary to disability.

Differences in sexual functioning may occur throughout the sexual response cycle for PWD and may vary based on the specific nature of the individuals disability. For example, among individuals living with spinal cord injury (SCI), a womans experience of physiological pleasure related to genital or other stimulation varies depending on the nature and severity of her injury (Mona et al., 2009), as does a mans ability to ejaculate and/or have an orgasm (Cardoso, Savall, & Mendes, 2009). Despite reductions in genital 418

sensation in people living with SCI, most individuals continue to be able to experience orgasm in alternative ways (e.g., through fantasy, stimulation of other body parts, use of erotic imagery), though the experience may be different than it was preinjury (Cardoso et al., 2009; Chance, 2002).

Mobility limitations and pain must also be assessed. Understanding the parameters of mobility will inform the conceptualization and treatment process, such as constructing adaptive sexual scripts. Additionally, the clinician should inquire about pain symptoms, which may be experienced during sexual activities as a result of either organic (e.g., inflammatory disorder, urinary tract infection, or other identifiable physical cause), nonorganic (e.g., anxiety and other psychological factors), or both (Clemency Cordes, Mona, Syme, Cameron, & Smith, 2013) factors.

COGNITIVE FACTORS


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Research on the sexual lives of PWD has increasingly examined the intimate activities of persons with cognitive and intellectual disabilities (McGuire & Bayley, 2011; Ward, Bosek, & Trimble, 2010). Of particular importance is the notion of sexual consent capacity, the capability for sexual decision making (McGuire & Bayley, 2011; Mona et al., 2010). Much of the focus has historically been on individuals with developmental disabilities (Mona et al., 2010); work is needed to expand the existing knowledge base to individuals with acquired cognitive impairments, such as traumatic brain injury (TBI) or stroke. Deficits in planning and problem-solving abilities, communication, or social skills and changes in behavior, such as disinhibition or apathy, can affect consent capacity and pose challenges to intimacy (Cameron et al., 2011). Although capacity to consent to sexual activities has not yet been defined for PWD beyond those with developmental disabilities, clinicians must be aware of the legal and ethical issues surrounding an individuals ability to consent to intimate sexual contact and the potentially fluid nature of this capacity (McGuire & Bayley, 2011).

PSYCHOLOGICAL FACTORS

Positive sexual experiences for PWD involve psychological factors related to self-image.

Body image is of particular relevance to PWD, especially in light of our societys devaluation of the disabled body, which may lead to internalized negative body images in PWD and even to lowered sexual desire in WWD (Nosek et al., 2001; Taleporos & McCabe, 2002). This internalized ideal may also affect how PWD view potential partners, leading PWD to reject those who have physical characteristics that are seen as potentially limiting to sexual enjoyment (Leibowitz & Stanton, 2007). Notably, body image and its centrality to the sexual well-being of PWD is variable and may change over time; thus ongoing assessment is warranted.

Sexual self-esteem (or sexual esteem) is the understanding of oneself as a sexual being and may include a personal evaluation of both sexual competence and attractiveness (Mayers, Heller, & Heller, 2003). Sexual esteem encompasses the cognitive, behavioral, 419

and emotional facets of ones sexuality (Mayers et al., 2003) and is a predictor of sexual adjustment after SCI (Mona et al., 2000). The experience of disability can negatively affect sexual esteem (Moin, Duvdevany, & Mazor, 2009); however, effective coping, such as keeping the disability in perspective, can protect against loss of sexual esteem among PWD (Taleporos & McCabe, 2001).

SOCIAL AND RELATIONAL FACTORS

The current sociocultural environment in the United States chronically exposes PWD to narrow definitions of attractiveness, virility, and beauty. The myth that PWD are asexual contributes to disablement (Olkin, 1999), as this misperception is often perpetuated by individuals closest to the PWD who may actively discourage them from dating (Esmail, Darry, Walter, & Knupp, 2010; Ward et al., 2010). When PWD do initiate intimate relationships, this stereotype may lead nondisabled peers to dismiss them as potential sexual partners (Howland & Rintala, 2001).

PWD also report practical issues as a barrier to successfully dating and establishing long-term relationships. Higher rates of poverty for PWD (She & Livermore, 2009) may affect access to partners by limiting the affordability of transportation and leisure pursuits conducive to meeting prospective partners. Living situations may be constrained by financial concerns and need for personal assistance, resulting in relatively less privacy for intimacy. For example, women have reported having to rely on their parents for accessible transportation to dates (Howland & Rintala, 2001).

For PWD who acquire their disabilities after establishing long-term relationships with partners, there may be a unique set of challenges. In one study examining the intimate lives of persons living with TBI and their partners, role changes and role strain left the nondisabled partner with limited energy for intimate acts (Gill, Sander, Robins, Mazzei, & Struchen, 2011). An examination of the sexual lives of persons with Parkinsons disease has revealed that as the condition progresses and functioning declines, the quality of the marital and sexual relationship tends to decline (Hand, Gray, Chandler, & Walker, 2010). Clinicians are encouraged to work with PWD and their partners to address the unique experiences of partnerships following an acquired disability, as effective communication can be helpful when facing the challenges of a new-onset disability (Esmail, Munro, & Gibson, 2007).

An additional consideration about the relational context is the increased risk of abuse or trauma for the PWD. Research has indicated that PWD, and particularly WWD and individuals with intellectual disabilities (Ward et al., 2010), are at risk of intimate partner violence, with approximately 60% of WWD reporting some sort of abuse (Nosek et al., 2001). When WWD find themselves in abusive relationships, they have fewer options for leaving than women without disabilities, due to lack of accessible services (Nosek et al., 2001). Poverty and its interaction with disability may also affect power issues within relationships, compounding the risk of abuse for the PWD due to challenges in leaving a problematic relationship. Clinicians need to be alert to the potential for abuse, to the practical consequences to a PWD when a relationship ends, 420

and to the difficulties of seeking help for abuse due to lack of privacy, transportation, or other facilitators of help-seeking behavior.

DIVERSITY FACTORS

Viewing disability as a minority cultural experience helps to conceptualize the context of clients sexual functioning concerns (Olkin, 1999). Assessment should include stigma and discrimination, access to or isolation from disability culture, and degree of identification with values of disability culture. Beyond a disability cultural lens, clients

frames of reference include multiple identity statuses that affect treatment. Hays (2008) developed a useful mnemonic, ADDRESSING, for the key areas of identity.

ADDRESSING highlights the need to attend to Age, Disability (Developmental), Disability (Acquired), Religion, Ethnicity, Socioeconomic status, Sexual orientation, Indigenous heritage, National origin, and Gender as domains that affect our experience of identity, social realities, well-being, therapeutic relationships, and treatment goals and processes. Often, these identity areas intersect in ways that are not simply additive. For example, generational status may interact with disability and sexual orientation in complex ways. An older gay male with a disability who came of age during a time of severe intolerance of and discrimination against LGBT individuals may have had a very different history of interactions with his social milieu and health care providers than a younger gay man with a disability. Assessing multiple sources of identity will help to understand the context within which sexuality is experienced for PWD.

**Summary**

A comprehensive assessment of sexual health concerns among PWD will involve diagnosis when relevant and helpful but will avoid an overreliance on diagnosis at the expense of context and resilience. Culturally competent sexual health clinicians will integrate information about physiological, cognitive, psychological, social/relational, and diversity-related factors affecting the PWD. In addition to barriers and challenges, clinicians will be alert for information about adaptive coping (e.g., perspective taking), individual and culturally based areas of strength (e.g., military veteran status, religious affiliations, ethnic ties), and other sources of resilience that may aid in treatment.

**TREATMENT APPROACHES TO SEXUAL ENHANCEMENT FOR**

**PWD**

Sexual enhancement for PWD is a collaborative endeavor among health care disciplines to address multiple facets of sexual well-being. Medical treatments have historically dominated sexual health care—especially following the advent of PDE5s to treat erectile dysfunction (ED). However, as sexual health care has advanced, key intimate and 421

psychosocial aspects of sexuality, as well as the need for a more comprehensive treatment approach, have been acknowledged (Basson, Wierman, van Lankveld, & Brotto, 2010; Consortium for Spinal Cord Medicine, 2010; McCabe et al., 2010). The following section provides an overview of the evidence base and recommended treatments for PWD with sexual concerns and offers an integrated approach to sex therapy with PWD that incorporates established and emerging therapies for sexual well-being.

**Medical Approaches**

The majority of research regarding treatment for sexual symptoms in PWD has focused on medical treatments (i.e., pharmaceutical, surgical), predominantly for individuals with an SCI or multiple sclerosis (MS), leaving much to be learned about the diverse disability community. Of note, medical treatment for sexual concerns in PWD can be very complex—requiring an indepth understanding of an often-complicated medical history and treatment regimen—and the following treatments are general guidelines represented in the literature.

The clinical practice guidelines for adults with SCI (Consortium for Spinal Cord Medicine, 2010) represent a pivotal move toward evidence-based sexual rehabilitation for PWD. For treatment of sexual functioning, they recommend reviewing the evidence-based options with men and women with an SCI, prioritizing treatment with least invasive option(s), and providing comprehensive resources for the decision-making process (the recommendations are available for download at www.pva.org). General treatment recommendations for males with an SCI include testosterone replacement for hypogonadism, PDE5 medications and intracavernosal injections for ED, vacuum devices and penile rings for ED, and penile implants as a last option due to the invasive nature and irreversible damage to tissue. The guidelines for women are very limited, with one recommendation for an external stimulating device to increase ability to orgasm (Sipski et al., 2001). Medical treatments for individuals with MS are very similar to those for individuals with SCI and include PDE5 medications, intracavernosal injections, and vacuum devices for the management of neurogenic ED (Fletcher et al., 2008).

**Metatheoretical Approaches**

When considering medical and/or psychosocial treatment options for a client with a disability, the clinician should consult evidence-based practices for the particular presenting symptom(s) and keep in mind the unique experience of living with a disability and how that may affect therapy (Sue et al., 2006). Many evidence-based models of treatment are overly focused on individual disease and deficit. However, evidence-based treatment can be adapted to disability-affirmative approaches that emphasize interactions among physical, environmental, and social factors, with a 422

particular focus on the removal of social and political barriers to well-being (NIDRR, 1999; Sue et al., 2006).

Disability-affirmative therapy (DAT; Olkin, 1999) is a metatheoretical perspective that provides a disability-positive context wherein specific treatment interventions can be applied. The DAT model encompasses several components: (1) empowerment and acknowledgment of social marginalization and environmental barriers, (2) appreciation of the dynamic nature of disability, (3) consideration of the medical realities of PWD

and recognition of personal coping strategies, and (4) provision of a therapeutic environment that provides affirmative goal setting and an integrated view of the self and encapsulates the values of flexibility and creativity that are prized in the disability community. Embedding established therapeutic practices (e.g., cognitive-behavioral therapy [CBT], behavioral therapy, relaxation techniques) into a disability-affirmative framework will allow for a truly integrated approach that includes addressing the individuals symptoms (e.g., physical discomfort, distress due to lowered sexual self-esteem), as well as the facilitating social and political factors (e.g., inadequate sexual health care, myth of asexuality, ableist models of beauty). Accounting for these multiple levels will aid the clinician in effectively empowering clients and promoting sexual health and well-being for PWD.

An additional treatment approach for working with PWD that can be applied across therapeutic modalities is feminist sex therapy. Key to this type of therapy is the process of addressing and deconstructing socially created messages about sex and understanding that sex and gender (and many would say disability) are social constructions (Tiefer, 1996). Also relevant for PWD is the feminist concept of defining sex in terms of the whole person in the context of a relationship, rather than individual-level terms such as dysfunction, disorder, pathology, or disability (Mona et al., 2009). The feminist conception is an excellent complement to well-established therapies, such as CBT, that challenge dysfunctional cognitions related to sexuality.

**Established Psychosocial Approaches: Cognitive and Behavioral Therapies**

To date there are no well-defined or empirically established models of psychosocial treatment to address sexual well-being for PWD (Mona et al., 2009). In fact, randomized controlled trials examining the effectiveness of psychological interventions for sexual functioning in general are few and far between, though a small number of studies have illustrated the importance of an integrated approach to sex therapy—pharmaceutical, surgical, and psychological (Banner & Anderson, 2007; Meana & Jones, 2011; Melnik, 2008; Melnik, Glina, & Rodrigues, 2009). These studies primarily address ED and premature ejaculation in the general adult population—on either the individual or the dyad level—and combine the use of PDE5s or other pharmacotherapy with CBT

techniques that include communication skills training, addressing maladaptive cognitions, decreasing performance anxiety, and behavioral techniques such as sensate focus and relaxation (Banner & Anderson, 2007; Meana & Jones, 2011; Melnik et al., 2009).

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Several well-established and emerging therapeutic modalities provide useful tools that can be integrated into a sex-positive approach to treatment. CBT techniques are foundational to sex therapy (Heiman & Meston, 1997; Meana & Jones, 2011), and, when utilized in a disability- and sex-positive framework, they can assist in the successful achievement of therapeutic goals through increasing cognitive and behavioral flexibility (Mona et al., 2009). For example, specific goals and strategies may include overcoming myths about disability and sexuality via psychoeducation and bibliotherapy, decreasing performance anxiety using relaxation techniques (e.g., sensate focus), decreasing maladaptive cognitions and negative sexual self-schemas, and increasing stimulus control (Nezu, Nezu, & Lombardo, 2004; for psychoeducational resources, see Kaufman, Silverberg, & Odette, 2003, and the National Sexuality Resource Center online at http://cregs.sfsu.edu/issues/sex-and-disability).

When working with PWD, treatment goals for attaining and maintaining intimate relationships may include social empowerment, which can be achieved through techniques such as normalizing, validation, Socratic questioning about personal and societal sexual values, and psychoeducation about enhancing sexual enjoyment. Also, the use of cognitive restructuring can help to increase flexible thinking and behavior by replacing maladaptive cognitions with more adaptive ones to facilitate sexual confidence and performance. Increased cognitive flexibility can lead to more creativity and experimentation, as well as a focus on pleasure and intimacy rather than on physiologically based performance. Stimulus control may be particularly salient for PWD, including optimizing environmental (e.g., temperature, lighting), temporal (e.g., time of day, post-bowel and bladder care), biological (e.g., fatigue, painful positioning), psychological (e.g., mood), and interpersonal (e.g., attractiveness to partner) factors to further enhance the intimate experience (Nezu et al., 2004). The emphasis on cognitive flexibility and behavioral skill building may make CBT particularly effective in empowering PWD to enhance their sexual and intimate experiences and relationships.

**Emerging Psychosocial Approaches: Third-Wave CBTs**

Third-wave CBTs (TWCBTs) such as acceptance and commitment therapy (ACT) have

emerged as effective treatments for various presenting problems (Pull, 2009). Though the empirical foundation for TWCBTs is developing, few studies have adapted and evaluated these innovative treatments for sexuality issues (Brotto, Basson, & Luria, 2008; Carson, Carson, Gil, & Baucom, 2004), and none have specifically addressed the use of TWCBT for sexuality issues among PWD. Mindfulness—purposeful and

nonjudgmental attention to the present moment—was successfully applied to a small sample of gynecological cancer survivors with female sexual arousal disorder (FSAD) as a psychoeducational and behavioral homework tool to increase desire and intimacy (Brotto et al., 2008; Brotto & Heiman, 2007). Also, preliminary evidence for the application of ACT principles to couples intimate and sexual lives has been found in a small number of studies, with behavioral and mindfulness techniques such as couples yoga, relaxation, and loving-kindness mindfulness meditation (Carson et al., 2004; 424

Honarparvaran, Tabrizy, Navabinejad, Shafiabady, & Moradi, 2010). Several elements of TWCBT approaches may benefit PWD. For example, ACT utilizes mindfulness, along with cognitive and behavioral techniques that facilitate psychological flexibility, emphasize value-driven behavior, and increase awareness and acceptance. The present-focused, nonjudgmental stance that ACT promotes appears well-suited for improving sexual health.

**Sensual Mindfulness**

Mindfulness has wide application for sex therapy and may be particularly helpful for PWD (Mona et al., 2009). For example, integrating mindfulness with traditional techniques, such as sensate focus, can enhance an already effective strategy to include the ACT goal of experiencing something fully without defense. A sensual mindfulness approach includes the traditional sensate focus—emphasis on staged practice of intimate touch—and integrates the goal of accepting any uncomfortable feelings or thoughts that might arise during intimacy while intentionally remaining in the present moment (i.e., not looking ahead to increasing levels of intimacy). As intimacy increases

—whether that is advancing sexual experiences or becoming more emotionally intimate with a dating partner—the client may subsequently experience heightened distress or anxiety. Mindfulness practice is rooted in a nonjudgmental stance and openness to all emotional experiences, and through practice it can aid in accepting anxious thoughts and reducing subsequent distress and avoidance behaviors during intimacy. As the client continues to practice mindfulness, he or she can become fully aware of present experiences and learn to accept his or her emotional experiences in the face of fear and/or anxiety while continuing to engage in value-driven behavior. For the clinician, mindfulness techniques and meditations can be found throughout the ACT literature, and specific resources are available through an online community at

www.contextualpsychology.org.

**Values Clarification**

ACT emphasizes engaging in behavior that reflects personal values and promotes values clarification—the process of articulating and exploring personal beliefs and core values.

This lends itself to sex therapy by allowing clients to generate questions about how their values affect their experiences of sexual and intimate relationships (Mona et al., 2009).

Examples of values for romantic and intimate relationships may include being intimate and honest, sharing similar interests, being trustworthy, experiencing new things, and being physically affectionate. Examples of sexual-expression values may include being open in sexual communication, being focused on the present moment in sexual interactions, being able to satisfy a partner, prioritizing sexual expression in relationships, and being willing to think broadly about sex and intimacy.

Clients with disabilities may benefit from clarifying their values that underlie 425

sexuality, which can be facilitated by asking questions about sexuality (e.g., "How important is sex in my life?"), relationships (e.g., "What do relationships mean to me?"), and beliefs (e.g., "What exactly do I believe sex and intimacy to be like for me?"). Some attitudes and beliefs regarding sexuality reflect early teachings that may interfere with optimal sexual functioning (e.g., "individuals with a disability are asexual") or may be in the form of negative self-statements (e.g., "Im not as attractive as other women"; "my penis doesnt get hard easily, so I might not be able to please my partner"). The ACT

literature provides several values-clarification tools that may be particularly useful for PWD who are exploring sexual and intimate values in therapy. The following is a brief example of values clarification utilizing the tool adapted from ACT for Depression (Zettle, 2007).

Case Vignette

Ted was a 38-year-old divorced white male with a T10 incomplete SCI following an automobile accident 3 years before. Ted used a wheelchair, lived in an accessible apartment, and had minimal assistance for activities of daily living (i.e., help with dressing and transferring from wheelchair to bed and bed to wheelchair). He presented for treatment stating that he "hadnt felt like himself" sexually since his accident and was not sure how he felt about pursuing sexual experiences as a man with a disability. He had been casually dating a few different women over the past year, but had difficulties coming to terms with his own sexuality and was not sure what an intimate relationship would be like for him. Ted reported no significant past mental health history with the exception of "being depressed" approximately 2 years before, after he and his former wife were divorced. After discussing his treatment goals, he and his therapist agreed that he might benefit from clarifying his values concerning sexuality and intimacy.

Before Ted was given the values clarification exercise, his clinician provided him with information about core values, differentiating them from goals or feelings, and about the importance of living in accordance with his personal values. His clinician explained that values were what were most important to him—the deepest, most meaningful aspects of his life—and that living these values daily instead of avoiding valued experiences would help him achieve his goals. The clinician assisted Ted with identifying intimate and sexual-expression values through questioning (i.e., "How important is my sex life to me?"; "What do I think sex will be like for me?"; "Do I feel sexual?"). Ted identified the values he wanted to explore as (1) prioritizing sexual experiences in his life, (2) pleasing his partner, and (3) having open communication about sex and intimacy with his partner. The values clarification exercise was explained to Ted. It consisted of nine statements to be asked for each value, and included questions such as "I value this because someone else wants me to," "I value this because I would be ashamed or guilty or anxious if I didnt," and "I value this because doing this makes my life better, more meaningful, and/or more vital," and questions related to the importance Ted placed on the value and his intentions to live accordingly. During the next session, Ted and his 426

clinician discussed his responses to this exercise, allowing Ted to continue to develop his thoughts about his own sexual needs and wishes for the future and to express any worries or distress that arose as a result of this process. Ted affirmed that having an intimate and sexual relationship was a core value of his and that he was motivated to work on relationship goals. Further areas of interest for Ted included discussing the challenges of dating as a PWD and getting a referral to sexual medicine or urology to discuss the physiological aspects of his sexual functioning.

**Practical/Experiential Approaches to Enhance Sexual Expression**

When conducting sex therapy with a person with a disability, practical issues may emerge as part of the treatment plan, including the use of sexual enhancement products, aspects of sexual positioning, preparation for sexual experiences, self-stimulation, and seeking relationships. An overall philosophical stance that may be helpful to PWD is one of creativity, humor, and experimentation, as suggested by Kaufman and colleagues (2003) in their consumer guide to sexuality and disability.

The use of sexual enhancement products, or "sex toys," is a potentially helpful intervention. In terms of what a clinician might suggest for an individual or couple, several variables might be relevant, including functional or physical limitations, the persons comfort level and desire to try a certain product, and whether or not assistance would be needed for that person to use the product. In some cases, personal assistance services (PAS) or caregiving services can be incorporated to help facilitate sexual encounters. For example, PAS services can be utilized to assist the PWD with preparations, such as setting up a device (e.g., vibrator) or positioning the person prior to a sexual act (Earle, 1999; Mona, 2003). However, given that caregiver assistance for sexual activity may not be readily available to some PWD, sexual products can lessen or change the ways that assistance is needed—or provide additional privacy for sexual activity (e.g., a privacy pillow with a storage pocket for erotica or a vibrator). For PWD, sexual products that provide better and safer positioning (e.g., sex cushions), increased lubrication for women (e.g., lubricating gels), or increased genital or other erogenous zone stimulation for those with decreased nerve sensation (e.g., ergonomically designed vibrators or extender toys) may be useful. It is also important to consider the acceptability of this option and to approach it with sensitivity. Also, individuals who are unfamiliar with the use of sexual aids will benefit from education about safety (e.g., cleaning instructions) and specific goals for use. For a review of adaptive sexual devices, see www.mypleasure.com/education/disability.

Physical and functional limitations for PWD may call for increased preparation for sexual experiences and present the need to adapt sexual scripts. This includes attending to bowel and bladder functioning, timing sexual activity to follow regular bowel and bladder care, and making potential modifications in sexual positioning for catheters or other assistive equipment. Also, for individuals whose daily pain levels may vary, scheduling sexual acts during times that are associated with less pain can be helpful but may require a new way of thinking about how to incorporate sexuality and intimacy into 427

a daily routine. It can be helpful for PWD to develop communication skills that involve partners and/or PAS in avoiding or minimizing pain during sexual activity.

Experimenting with a range of intimate acts can help a PWD develop a repertoire of options beyond intercourse, such as kissing and skin-to-skin contact, that may be less likely to result in pain (Welner, 1997). The clinician can assist the client by talking through the sexual script, planning for potential challenges, and emphasizing preparation of the sexual environment (i.e., stimulus control).

Some PWD may be concerned with the limited availability of intimate partners.

Depending on individual values, beliefs, and goals, self-stimulation may be an appropriate behavioral intervention for PWD with or without available intimate partners. Self-stimulation can be a positive way of expressing sexuality that is less likely to be impeded by physical and social limitations (Fraley, Mona, & Theodore, 2007).

Sensitive intervention strategies may include behavioral approaches (e.g., utilizing sexual aids to achieve stimulation), cognitive work (e.g., exploring core beliefs about solitary sexual behaviors and increasing cognitive flexibility about stimulation activities), and experiential homework (e.g., mindfulness during stimulation exercises).

For those who are uncomfortable with self-stimulation or who simply prefer to seek a relationship for sexual expression, identifying opportunities for meeting people may become the primary goal of treatment. Clients with disabilities may seek partners in the

"usual" places, including through work, friends, religious communities, and so forth.

Others may choose to seek partners in disability-friendly environments, such as events in the disability community (e.g., wheelchair sporting events), in which individuals may be more open to difference. Internet resources are increasingly utilized by disabled and nondisabled individuals looking for romantic relationships (and sometimes purely sexual relationships), and this may be a potential avenue to explore. The internet also affords opportunities to "practice" being comfortable with flirting and talking with potential partners before making a commitment to meet in person. Preparing to meet potential partners face-to-face may include identifying ways to feel sexually desirable, such as prioritizing attractive clothing and engaging in personal grooming strategies such as wearing makeup and using scented products. Given the physical vulnerability of many PWD and the higher rates of trauma and abuse that have been reported for this population (Ward et al., 2010), clinicians should be sure to educate clients about safety precautions when meeting prospective partners.

**CASE DISCUSSION**

The following is a case discussion of Tony, a composite of clinical and research experiences with PWD presented to illustrate many of the suggestions made here. We suggest that readers consider how they might respond to Tony. What does this trigger in terms of fears, assumptions, values, and confidence level in developing treatment goals and strategies? How might therapists go about developing greater awareness of disability in order to move beyond problematic responses (e.g., pity, infantilization, and 428

idealization)?

Tony was a 27-year-old cisgender Latino male Marine Corps combat veteran of Operation Iraqi Freedom (OIF) who had recently returned from two successive deployments. Tony, working in infantry as a rifleman, fought on the front lines during both deployments. He returned from military service with several combat-related injuries as a result of stepping on an improvised explosive device. This damaged many areas of Tonys body, leading to a moderate hearing loss in his left ear, two above-the-knee amputated legs, and the loss of his penis and testicles. He was triaged for immediate medical care in Iraq and then transferred through a series of treatment sites prior to reaching his local Veterans Medical Center. Tony spent most of the first 3

months after being discharged from the Marines as an inpatient at the Veterans Administration (VA) hospital and then began outpatient medical treatment.

Tony had no history of mental health concerns prior to entering the service; however, he had had a very positive experience with an LGBT support group in his late teens that helped him to be receptive to mental health care as part of his rehabilitation process. At his VA hospital, he met with a rehabilitation psychologist regularly until discharge to discuss issues related to adjustment, adaptive skills, and the use of assistive devices—

prosthetic legs, crutches, and occasionally a manual wheelchair. Working with this therapist, he began to address issues about his sexuality and sexual identity in the context of the changes to his body. At the time, however, he acknowledged that he had much to learn about caring for and working with his new body, and sexuality was not the immediate priority.

Approximately a year and a half after sustaining his injuries, Tony decided to seek assistance from a psychotherapist at a well-known LGBT-affirmative psychotherapy practice to work through his adjustment to his genital loss. Tony had selected his therapist because she seemed open and comfortable with his disclosed body changes, as demonstrated by her willingness to discuss ways in which she might adapt her office environment to accommodate Tonys disability-related limitations. Specifically, Tony had difficulty hearing her at first, given the acoustics in her office. She was able to reduce noise interference by turning down her ceiling fan and moving her white noise machine further from their sitting area. She also positioned her chair so that her voice could carry more directly to his right ear and so that he could see her lips more clearly as she was speaking to him.

During their first meeting, Tony stated that after acquiring his injuries, he felt a profound sense of discontinuity from his preinjury life and experienced ongoing uncertainty and worry about his future. He had envisioned having a military service career and felt that being a Marine was a major part of his identity as a man, personally and also within his family of origin, for whom military service was a highly prized aspect of masculinity. Also of increasing importance to Tony were the issues of retaining his identity as a gay man with a strong sexual drive and pursuing his goal of being romantically and sexually partnered with another man. His therapist validated the importance of this disclosure and employed reflective listening and Socratic questioning to encourage Tony to further discuss how his identity as a gay Latino male related to his current sexual concerns. Tony recalled always being aware of his attraction to other 429

males. His involvement in his first long-term sexual relationship in his late teens prompted him to join the LGBT support group that focused on coming-out issues and developing a positive identity. Tony had found it empowering and eventually disclosed his sexual orientation to his parents, who acknowledged that a maternal uncle was also gay and supported Tony as a gay male. While in the Marines, he reported having shorter term sexual partners, finding it difficult to pursue a serious relationship.

Over the course of their work together, Tony readily disclosed his fears about his viability as a romantic and sexual partner given the degree to which his body—especially his genitals—had been altered. The therapist became aware of her own challenges in visualizing a hopeful, partnered future for her client given the severity of his injuries.

She obtained consultation and was encouraged to examine her own worldviews further.

This was facilitated by a self-awareness exercise her consultant led her through, examining her own identities, personal experiences of being included or excluded, and times she had treated others unequally. This raised her awareness of her tendency to stereotype male sexuality, and it helped her reconnect empathically with Tonys dilemma from a stronger, advocacy-centered position. She also led Tony to identify his own assumptions and values about disability, masculinity, attractiveness, and sexuality.

He found that many of his beliefs were still relevant (e.g., "Feeling desirable is important to me"), whereas others required modification (e.g., "Sex should be spontaneous") or needed to be challenged (e.g., "Gay men have to live up to certain ideals of physical beauty and sexual performance").

The therapist did have previous experience working with transgender people and had some knowledge of genital changes and the functional issues that may follow genital surgery. This background helped her detach more completely from a culturally ingrained conceptualization of sexuality that was ableist in its reliance on typical genital structure and function. She found it helpful to draw upon her knowledge of creative strategies for sexual pleasure that her transgender clients had utilized in order to expand Tonys sense of sexual possibility. Fortunately, Tonys sex-positive worldview helped him to be open to exploring sexual activities. His therapist discussed different enhancement options, including sex toys and positioning pillows, that expanded the options for stimulation. Initially, Tony experimented with these sexual enhancement aids in solo sexual activity. Sensual mindfulness helped him to tolerate and eventually reduce the feelings of anxiety that initially arose during sexual activity and fantasy. With practice, he found that he could experience a great deal of erotic stimulation and satisfaction, often enhanced by fantasy of his preinjury or postinjury self. But he longed for partnered activity and to provide pleasure and experience mutual enjoyment.

As he and his therapist discussed the risks in meeting men and initiating dating, Tony identified disclosure of his physical differences as the next challenge in establishing a romantic and sexual relationship. Tony and his therapist role-played conversations in which he broached the topic of intimacy and disclosed the nature of his genital changes. His experiences with dating provided much clinical material for them to work with. At times, they found that leveraging Tonys gentle sense of humor provided perspective and leavened the painfulness of disappointment in those initial encounters. Ultimately, he found that he was better able to identify with men who were 430

less tied to conventional sexual expressions and who might be open to exploring a sexual connection with him. It remained easier for him to connect with veterans, whether nondisabled or disabled, because they understood the risks of combat that had led to the changes in his body. Over time, his volunteer involvement with disabled veterans

organizations led him to connect with other gay veterans, and his outgoing personality helped to attract the attention of some of these men.

By the end of treatment, Tony had achieved many of his goals. He claimed his identity as a disabled veteran, was proud he had served his country, and felt connected to veterans who also had major changes in bodily functioning. Tonys self-esteem was further enhanced as he embraced disability cultural strengths, such as flexibility, humor, and pragmatism. Behaviorally, Tony had developed a sexual repertoire that included solo and partnered activity that was sensuous, pleasurable, and emotionally rewarding, and he was confident in his ability to both receive and provide pleasure. At times, popular media, gay culture, or mainstream assumptions about what it means to be a virile man still caught him off guard, and he felt hurt or angry about the insensitive, narrow portrayals of male desirability. But he would typically regain perspective through talking things over with members of his support network.

Tony benefited from his therapists attention to diversity and her willingness to modify practical aspects of her therapy and engage in her own learning process. His therapist utilized both traditional CBT (cognitive restructuring and role playing) and TWCBT strategies (values clarification and sensual mindfulness) in the context of a disability- and gay-affirmative approach to psychotherapy. She encouraged practical strategies for developing a sexual repertoire through the use of sexual aids. Finally, she retained a sense of Tony as a person within the context of multiple intersecting identities, rather than distancing from him by either pitying or idealizing him.