Sexuality and Disability

Abstract

Sexuality and disability is an important topic in our global society. Dismantling myths about sexuality and disability is considered a final frontier for people with disabilities. Dismantling myths about sexuality and disability is vital to the overall health and well-being of people with disabilities. A major aspect of the dismantling process is to acknowledge that sexuality is a significant quality of life determinant for all human beings. This chapter provides information that will promote a healthier and more accurate view of Sexuality and Disability. Dismantling this last frontier involves providing the readership with relevant historical information; information about psychosocial factors and attitudes that influence sexuality; and information about ethical practice guidelines. Information pertaining to sexuality training, specific provider competencies and how select disabilities and chronic illness impact sexuality is also covered in the chapter.

1. Introduction

Sexuality and disability is a comparatively new issue of concern with pertinent research on the topic originating in the 1970s [1]. It was during this era that we witnessed increased focus on principles of normalization as a basis for service delivery for people with disabilities [2]. It was also during the 70s that the Twelfth World Congress of Rehabilitation International convened to address the rights of people with disabilities with regard to sexual behavior, e.g., the right to be informed about sexual matters, the right to sexual expression, the right to marry, and the right to become parents [3]. Despite these pioneer efforts, people with disabilities continued to encounter stigmas and negative attitudes. Fear, ignorance, and misconstructions have resulted in people with disabilities being viewed as asexual beings. Amplified educational and advocacy endeavors are needed to bring greater awareness to the fact that people with disabilities have an indisputable right to meaningful sexual relationships, sexual satisfaction, and sexual expression. Sexuality is uniquely manifested through language, emotions, thoughts, and behaviors. It is a byproduct of personal values, beliefs, and desires, as well as cultural and gender socialization. Stanojević et al. [4] posited that sexual socialization plays a critical role in healthy sexual development. They discussed the dynamical relationship between sexual behavior and sexual socialization and how the two influence sexual health. Social disconnections or the lack of appropriate sexual socialization can lead to maladaptive sexual behaviors and social isolation.

Best professional practices dictate that healthcare providers refrain from coercing clients to discuss sexuality needs or concerns. However, questions pertaining to this significant aspect of human functioning are basic to holistic assessment and treatment. Clients should feel as if the door to discussing these matters is open throughout the tenure of care or service and that sexuality is a natural topic for discussion. Conscientious providers are aware of their limitations and promptly refer out when a sexual concern extends beyond their scope of practice. According to Nosek [5], “disability is a complex phenomenon, but psychosocial and social factors make all the difference in the outcomes” (p. 121). In the following section we will explore psychosocial factors that should be considered when sexuality and disability present as a rehabilitation concern.

2. Psychosocial and factors

The goal of the conscientious provider is to increase protective psychosocial factors and to decrease or eliminate psychosocial factors that foster risk or harm. These factors can be addressed by a single provider or an interprofessional team [6]. According to Mah and Binik [7], sexuality involves more than physical performance or physical factors. Positive attention to psychosocial factors tend to correlate more with healthy sexuality. Table 1 depicts psychosocial factors impacting sexuality.

Protective factors	Risk factors
Healthy, functional, supportive family-of- origin	Dysfunctional family-of-origin
High level of self-confidence, self-esteem	Low self-confidence, poor self-esteem
Appropriate sex education (e.g., age level, cognitive level, etc.)	No formal sex education
Body image acceptance (rejection of dominant, ableist, heteronormative notions about beauty, sex)	Poor body acceptance (internalization of dominant, ableist, heteronormative notions about beauty, sex)
Positive social network	No (or insufficient) social network
Healthy, positive coping ability	Poor coping ability
Internal locus of control	External locus of control
No history of sexual abuse, exploitation	History of sexual abuse, exploitation
Acceptance or positive adaptation to disability	Low acceptance or poor adaptation to disability
General sense of optimism	General sense of pessimistic
Service agency or provider adheres to a social-environmental model of care	Service agency or provider adheres to a medical model of care

Table 1.

Psychosocial factors impacting sexuality.

Source: [5, 8, 9].

A holistic assessment tool should capture information or invite discussion in all of the areas above. This information can easily be converted into a needs assessment. Agencies adhering to the medical model of disability versus the social-environmental model of disability may not see the value of assessing for protective and risk factors that impact sexual functioning.

2.1 Social stigmas and attitudinal barriers

Myths about disability and sexuality are pervasive in our society. According to Esmail et al. [8], stigmas and negative attitudes often result in the internalization of concepts that can adversely influence self-esteem and sexual confidence. The researchers underscored how public attitudes and perceptions are driven by education and knowledge. Personal biases and beliefs can also limit providers’ ability to engage comfortably with clients while discussing sexuality or sexual health. The ethical expectation is to do no harm; yet harm can occur when providers fail to embrace the notion that sexuality is a critical quality of life determinant. It is important that healthcare professionals be mindful of the roles they play in propagating myths and negative attitudes about sex and disability. Obtaining accurate knowledge and relaying this knowledge is the only way to eradicate broadly held destructive beliefs [10]. According to Haboubi and Lincoln [11], 90% of multi-disciplinary health professionals agreed that sexuality should be part of holistic care (N = 813); yet 86% felt poorly trained and 94% were unlikely to discuss sexual issues with patients. Healthcare providers in a qualitative study (focus group discussion) confirmed that sexuality conversations were lacking in many healthcare settings. Inquiries tend to be superficial; areas of needs are rarely assessed; and there is a lack of follow-up. Typically, during the hospital admission process, patients are asked about sexual function, but investigation and intervention beyond initial inquiries are rare [9]. Currently many healthcare providers continue to report a lack of relevant or formal education as it relates to sexuality, or sexuality and disability. Many feel that sexuality is not a primary core competency. Kazukauskas and Lam’s [12] findings supported the premise that increased proficiency leads to greater ease when discussing and addressing issues pertaining to sexuality and disability. The provision of support that becomes possible with a deeper understanding of sexuality and disability is fundamental to the rehabilitation process [10].

2.2 Taboos and myths

Sexuality has longed been a taboo subject because of societal, religious, and cultural norms and expectations. It is the forbiddingness of the topic that has erected barriers to addressing sexuality in healthcare settings. This taboo is associated with a lack of knowledge, inadequacies in training, and low levels of comfortability. Sexuality is a private and sensitive subject and must be approached professionally to avoid any confusion of emotions and feelings between the healthcare professional and client. Therefore, adequate knowledge of and training on how to approach and address this topic is vital to overcoming barriers and ensuring successful interventions.

Common myths are outlined below [3, 10, 13, 14]. Rehabilitation professionals, in particular, have an obligation to do what they can to debunk these myths.

• People with disabilities are asexual, having no sexual desires or interests

• No able-bodied person would find someone with a disability desirable

• Sexual intimacy is not possible for people with disabilities

• People with disabilities are not suitable marriage or sexual partners

• Preventive medical procedures such as pap smears are not necessary for women with disabilities, especially those with spinal cord injuries

• Sex education is not necessary for people with disabilities

• It is easier for people with disabilities to adapt to sexual losses and changes

2.3 Legal and ethical requirements

Large aggregate care institutions serving people with disabilities were closed in most western European and North American countries in the 1970s and 1980s and today, large numbers of people with disabilities are living independently. They hire personal assistants who are their employees, not their overseers. They have been empowered by the disability rights movement to demand access, support, and respect. As part of their increased independence, many are unapologetically exploring their sexuality. They are finding partners, engaging in romantic relationships and refusing to be told that a disability automatically disqualifies them from having an erotic life [15]. There is a delicate balance between the legal and ethical requirements to protect people with disabilities from harm, including sexual exploitation and abuse, while at the same time protecting their rights to express sexuality in a healthy way [16]. Honest, accurate information about sexuality changes lives, especially for individuals with disabilities. It dismantles stereotypes and assumptions, builds self-acceptance and self-esteem, fosters healthy relationships, improves decision-making, and has the potential to save lives. However, because the topic of sexuality and disability is often surrounded by controversy and stigma, it is important for healthcare providers to remain ethical and professional when dealing with such issues.

2.4 When protection from harm infringes upon personal rights

There is a delicate balance between the legal and ethical requirements to protect people with disabilities from harm, while at the same time protecting their rights to sexual expression. Traditionally, parents, professionals, and the law have erred on the side of protection from harm, consequently limiting sexual expression of people with disabilities, e.g., the same laws that were designed to protect people with disabilities from harm prevented them from engaging in normal sexual activities [16]. What appears to be concern for the welfare of people with disabilities therefore could, in reality, be masking an anti-sexual bias. Since the law protects the rights for sexual activity for and between individuals with disabilities, service providers cannot have policies prohibiting it [17]. Instead, agencies should have policies that help people with disabilities learn about and express their sexuality in healthy ways within the confines of the law and ethical principles [16, 18, 19].

Among the many barriers to healthy sexual expression for people with physical and developmental disabilities is lack of privacy [20]. Individuals have the right to privacy and to consensual sexual relations. These rights are restricted, obviously, for children, and also for those individuals who are determined to be incapable of consenting to sexual activities. However, the right to privacy is often restricted in the case of an individual who engages in severe self-injurious behavior and/or property destruction. In these cases, the individual’s service or behavior plan frequently requires ‘line-of-sight’ supervision, which challenges the individual’s right to private sexual expression. This is not a simple matter, as it exemplifies the conflict between concern for wellbeing and upholding of the rights of the individual.

2.5 Consent

Capacity to consent can vary over time. This means capacity to consent is a state rather than a trait. Sexuality education can enhance the capacity of people previously deemed incapable of making informed decisions. Thus, repeating an assessment for capacity to consent may yield different findings across time and may indicate that even individuals with intellectual or developmental disabilities who were previously deemed incapable, have developed the capacity to consent to sexual interactions. Additionally, the requirements of consent can vary based on the nature of the sexual interaction. Thus, to best help people with disabilities make informed choices, good quality ongoing sexuality education is necessary [21].

The crucial components of capacity to consent are knowledge, rationality, and voluntariness [22]. Sexual knowledge starts with the ability to label body parts, identify sexual behaviors, and understand where and when it is appropriate to engage in sexual behaviors and where and when it is not appropriate to do so. Sexual knowledge encompasses being able to state the consequences of sexual behavior, specifically pregnancy and sexually transmitted infections, and how to prevent them. Knowledge also means the person can demonstrate how to obtain and use contraception [22]. Voluntariness means the person can decide without coercion, that, and with whom he or she wants to have sex. This also means he or she is able to take necessary self-protective measures against abuse, exploitation, and other unwanted advances. Voluntariness also means that the person has the ability to say, “No,” either vocally or non-vocally, and to remove him or herself from a situation and indicate a desire to discontinue an interaction [22, 23, 24]. Rationality means the ability to evaluate and weigh the pros and cons of a sexual situation and make a rational decision. When considering someone’s ability to be rational, any neurological conditions that can impair decision-making need to be considered. Determining rationality comprises the individual’s awareness of person, place and time; his or her ability to accurately report events; and to discriminate between fantasies, lies, and truth. The individual should be able to describe the process for deciding to engage, or not, in a partnered sexual interaction, to demonstrate an understanding of mutual consent, and chose socially appropriate times and places to engage in sexual behaviors. Finally, he or she should be able to perceive and respond to the vocal and non-vocal signals of the feelings of his or her partner, specifically the desire to continue or discontinue the sexual interaction [22].

2.6 Disabilities influence on sexuality

Sexuality is defined as a multidimensional construct in which the individual expresses feelings, thoughts, and cognition, such as the demonstration of intimacy, affection, love, touch, hugging, including sexual contact itself [25]. This asserts that sexuality includes many aspects of a person’s life and while it encompasses the concept of intercourse, sexuality exceeds the idea of physical sex. The ability to fully experience sexuality does not have to be hindered by a person’s or couple’s disability status. Sexuality and being sexually healthy is an important part of life. According to the World Health Organization (WHO), sexual health is defined as “a state of physical, mental and social well-being in relation to sexuality”, which “requires a positive and respectful approach to sexuality and sexual relationships, as well as pleasurable and safe sexual experiences, free of coercion, discrimination and violence” [4]. This definition indicates that sexual health is not just about physical intercourse but also about the mental and social connections involved with intimacy. People with disabilities have the right to experience this connectivity just as people without disabilities. Societal attitudes, beliefs and perceptions guide how individuals with disabilities are regarded. These attitudes, beliefs, and perceptions are also evident in healthcare settings. If an individual without a disability experiences a lack of sexual desire, he or she is diagnosed as having hypoactive or inhibited sexual desire disorder [26]. Similarly, if this person is unable to experience an orgasm, he or she is diagnosed as having an orgasmic disorder. The rendering of a diagnosis makes it possible to qualify for medical treatment and to receive assistance in achieving sexual satisfaction [26]. These disparities in medical perspectives can ultimately impact the quality of life for people with disabilities. Very often these individuals are expected to simply adjust to their disability status with no consideration or discussion about appropriate or possible interventions.

More than 15% of the world’s population have disabilities. These disabilities can be categorized as physical and sensory; developmental and intellectual; and psychosocial [27]. Society has long disregarded the sexuality and reproductive concerns, aspirations, and human rights of this sector of our population [27]. People with disabilities are often not educated related to concepts about sexuality, relationships, and intimacy. People with disabilities are often viewed as infantilized and held to be asexual (or in some cases, hypersexual). Furthermore, they are often viewed as incapable of reproduction and unsuitable as sexual or marriage partners or parents [27]. While not all disabilities impact sexuality, many of them disabilities do. The following sections discuss how physical disabilities, cognitive/intellectual disabilities, mental disabilities, and disabilities related to aging impact sexuality and levels of intimacy.

2.7 Physical disabilities

2.7.1 General description

Physical disabilities are disabilities that impact the mobility of a person. Physical disabilities directly affect muscles and limbs. Physical disabilities include but are not limited to the following types of conditions: lupus, cerebral palsy, absent or reduction in limb functions, and muscular dystrophy.

• Lupus

  • Lupus is a chronic autoimmune disease where one’s own immune system attacks many different systems within the body.

• Cerebral palsy

  • Cerebral palsy is a group of disorders that affect a person’s ability to move and maintain both balance and posture. This disorder is characterized by stiff muscles, uncontrollable movements, and poor balance and coordination [28].

• Absent limbs or reduction in limb functions

  • This group is related to the loss of limbs through amputation or injury in addition to the absence of limbs since birth. Additionally, this group includes individuals who lose functioning or control of their limbs over time, limiting their mobility and their ability to complete tasks

• Muscular dystrophy

  • Muscular dystrophy is a group of muscle diseases that are caused by genetic mutations [29]. Muscular dystrophy affects each person differently. However, in general terms this disorder is characterized by muscle weakness that decreases mobility and the ability to complete everyday tasks [29].

2.7.2 Impact on sexuality

Physical disabilities impact sexuality in a variety of ways. The impact is based on the person, their specific condition, and the severity of their condition.

• Lupus

  • Individuals with lupus are impacted physically and emotionally by their symptoms. Sexual dysfunctions are the result of both the physical and psychological problems [30]. The physical limitations affect individual’s ability to be intimate but psychologically their motivation and desire to engage in intimacy is impacted. Those diagnosed with lupus often experience pain during sexual activity [30]. Pain can be a significant barrier to a healthy sexual experience. With lupus, this pain can occur even with gentle movement. Pain during intercourse, vaginal dryness, and the development of ulcers in the mouth and genitals areas are manifestations of with lupus [30]. Additional side effects of lupus that such as fatigue and weight gain may also impact sexuality.

• Cerebral palsy

  • Individuals with cerebral palsy frequently are not able to reach an orgasm and report infrequent experiences with intimacy. Individuals with cerebral palsy are limited by personal and functional characteristics that are specific to their type of cerebral palsy. Additionally, they may struggle with issues related to energy, fatigue, body image concerns, and lack of sexual confidence.

• Absent limbs or reduction in limb functions

  • While sexual functioning is rarely structurally diminished by absent limbs or reduction in limb functions; many individuals with these disabilities experience sexual challenges [31]. They may struggle with internalized views of their sexual self or with the external views of others. Reductions in sexual interest, frequency, arousal, and difficulties pertaining to orgasm and sexual drive have specifically been reported in this group of disabilities [31].

• Muscular dystrophy

  • Individuals with muscular dystrophy report difficulties with kissing and oral sex [32]. Both of these activities require significant muscle movement and coordination. Individuals with muscular dystrophy also report difficulties with bodily positions during sexual activities and having a negative body image in general [32]. Individuals with muscular dystrophy also report difficulty communicating with their partners about their functional limitations [32]. Some of their limitations are related to hugging and being able to caress [32]. Other manifestations may include pain during intimacy, fatigue, and erectile dysfunction [32].

2.8 Cognitive/developmental/intellectual disabilities

Cognitive/developmental/intellectual disabilities are disabilities that impact the thinking process, adaptive development, and ability to socially connect with others. These conditions have a variety of social characteristics: impulsivity, limited attention span, difficulty understanding social ques, and perceptual limitations related to other behaviors. This group of disabilities are characterized by diagnoses such as attention deficit hyperactivity disorder (ADHD), autism spectrum disorder, and down syndrome.

2.8.1 General description

• Attention deficit hyperactivity disorder

  • ADHD is a neurodevelopmental disorder, which many recognize as a childhood disorder [33]. However, a review of the literature as well as longitudinal studies of individuals with ADHD reveals that symptoms of ADHD can persist into adulthood [34]. According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM 5), ADHD is characterized by impulsivity, hyperactivity and inattention [35]. Overall, it is a developmental disorder that impacts social interaction and behavior patterns.

• Autism spectrum disorder

  • According to the DSM 5, autism spectrum disorder is a neurodevelopmental disorder characterized by (1) persistent deficits in social communication and social interaction across multiple contexts and (2) restricted, repetitive patterns of behavior, interests, or activities [35]. Autism spectrum disorder may impact individuals’ ability to interact socially and make connections with others.

• Intellectual disability

  • This is a disorder where an individual may present with limited understanding along a spectrum. These individuals may present with cognitive impairments (mild, moderate, severe or profound).

• Down syndrome

  • Down syndrome is a genetic disorder that results in an extra chromosome 21, either partially or fully. Down syndrome symptoms exist on a spectrum from mild to severe. Individuals with Down syndrome often present with both physical and intellectual challenges.

2.8.2 Impact on sexuality/intimacy

• Autism spectrum disorder and ADHD

  • Social connection, a large component of sexual health, is often a major obstacle for individuals diagnosed with autism spectrum disorder [4]. Individuals with autism spectrum disorder often have social deficits that influence their ability to connect with others. Sexuality is associated with an emotional and social skillset that may directly influence appropriate sexual behaviors and how human beings connect with others [4]. Similarly, to autism spectrum disorder, ADHD presents social obstacles. These social obstacles impact intimacy, experiences with connectivity, and sexual decisions.

• Intellectual disability and down syndrome

  • Studies indicate that people with intellectual disabilities and Down syndrome face various personal and socioenvironmental barriers in their sexual lives [36]. Many of these are related to their inability to understand the dynamics of intimacy and sexual situations. Some of the barriers that negatively impact individuals with intellectual disabilities and Down syndrome include limited sexual knowledge, poor education, negative attitudes related to sex, lack of access to healthcare, lack of sexual experiences, and social isolation [36]. Each of these factors impede the development of healthy sexual behavior practices. Overall, the lack of knowledge about sexuality coupled with limited sexual experiences, language difficulties, communication problems, fear, embarrassment, low self-esteem, and poor negotiating skills can increase exposure to unsafe situations for both men and women with intellectual difficulties and/or Down syndrome [36].

2.9 Mental disabilities (mental illnesses)

There are many mental health disorders that impact sexual functioning. Some categories identified in the DSM 5 are mood disorders, anxiety disorder, psychotic disorders, and eating disorders. The prevalence of sexual dysfunctions is higher in persons with mental disorders, particularly those treated with psychotropic medications [37].

2.9.1 General description

• Mood disorders

  • This is a group of mental health conditions that is characterized by the disturbance of one’s mood contributing to feelings of dysthymia, dysphoria, euthymia and/or euphoria. Very often in this group, a person’s mood is unstable and requires medical treatment.

• Anxiety disorder

  • This is a group of mental health conditions that are known to cause excessive and consistent fear and worry. Some individuals may experience panic attacks or have severe forms of anxiety that not only impact their perceptions and experiences socially and intimately, but also affect their physical mobility.

• Psychotic disorders

  • This is a group of mental health conditions where perceptions and experiences are impacted by external stimuli and thoughts that may not be based on reality. Psychotic disorders are regularly treated with antipsychotic medications whose common mechanisms impact sexual experiences as well [37]. Symptoms associated with psychotic disorders may also impact the ability to meaningfully connect with others, socially and intimately.

• Eating disorders

  • This is a group of mental health conditions relate to eating habits. Eating disorders are manifested by eating and purging, binge eating, and extreme caloric restriction. Very often individuals are ashamed of their behaviors and engage in these activities in secret. Eating Disorders can influence individuals’ ability to connect socially and intimately with others.

2.9.2 Impact on sexuality/intimacy

The rate of sexual disorders in people experiencing mental disabilities is significantly high. The use of psychotropic medications and subsequent side effects often exacerbate sexual dysfunction [37].

• Mood disorders

  • Major depression is a common mood disorder. Decreased libido commonly accompanies an episode of major depression [37]. Depressed persons may also experience diminished ability to maintain sexual arousal or achieve orgasm. In males with severe depression, the rate of erectile dysfunction is as high as 90% [37].

• Anxiety disorder

  • There are several types of anxiety disorders and each has symptoms that impact a person’s ability to emotionally connect with others due to stress and worry. Additionally, a loss of libido occurs frequently in people with high levels of anxiety.

• Psychotic disorders

  • Patients suffering from psychotic disorders are prone to experience sexual dysfunction as a part of the nature of the disease [37]. Negative symptoms of the disorder, such as anhedonia, avolition, and blunted affect significantly diminishes the ability to enjoy sexual and intimate activities [37]. In addition, these individuals face difficulties in establishing relationships due to recurrent psychotic episodes, obesity, and low self-esteem [37].

• Eating disorders

  • Clinicians have often reported that anorexia nervosa patients suffer from sexual dysfunction and immaturity, evident by low sexual interest, inhibited sexual behavior, disgust towards sex, and fear of intimacy [37].

2.10 Aging/neurological disabilities

Aging and neurological disabilities are disabilities that impact the brain and spinal cord. These disorders may also be more prominent in individuals who are older.

2.10.1 General description

• Alzheimer’s disease and dementia

  • Dementia is a disorder that encompasses conditions that affect memory, focus, communication, judgement, and perceptions. They vary in degree of severity and influence the way individuals are able to interact with and experience others. Alzheimer’s disease is a specific and common type of dementia.

• Parkinson’s disease

  • Parkinson’s disease is an age-related, chronic, multisystem, progressive disorder with motor symptoms and nonmotor symptoms [38]. Some of the motor symptoms include rigidity, tremors and postural instability [38]. Some of the nonmotor symptoms include anxiety and depression.

• Traumatic brain injuries

  • Traumatic brain injury is harm to the brain due to trauma. This can result from a forceful strike to the head or from something penetrating the head. Both injuries can result in both physical and emotional symptoms.

• Spinal cord injuries

  • Spinal cord injuries are debilitating conditions that result from a sudden, traumatic impact on the spine that fractures or dislocates the vertebrae [39]. The severity of the injury and the location of the injury dictates the level of functional limitation. Spinal cord injuries can result in paraplegia, or tetraplegia [39]. Paraplegia is defined as the impairment of sensory or motor function of the lower extremities while tetraplegia is defined as a partial or total loss of sensory or motor function in all four limbs [39].

2.10.2 Impact on sexuality/intimacy

• Alzheimer’s and dementia

  • Individuals diagnosed with dementia or Alzheimer’s endure mental health symptoms such as depression and anxiety that impact their motivation and ability to participate intimately with others. Physically they may experience erectile dysfunction and reduced strength and mobility due to impairment of the motor systems.

• Parkinson’s

  • Adults with Parkinson’s report significant adverse effects on quality of life due to their symptoms [38]. They report concerns with both depression and anxiety [38]. These symptoms influence how they view themselves and how they believe others view them. They also report issues with urinary disturbances and erectile dysfunction as well as issues with pain, and sensory issues related to the reduced blood flow to and from sexual organs [38].

• Traumatic brain injury

  • Individuals who experience traumatic brain injury report coping with changes in their sexual desires. Some report that they have decreased sexual desires and a loss in sexual interest while others report increased in sexual desires and difficulty controlling sexual desires [40]. Individuals with traumatic brain injuries report decreased sexual arousal even when they are interested in intimacy [40]. Men may experience erection difficulty, while women may present with difficulties with vaginal lubrication. Both men and women with traumatic brain injuries report trouble reaching a climax and in general they report lacking satisfaction after intimacy [40].

• Spinal cord injuries

  • The type of injury to the spinal cord dictates the degree of sexual difficulty [41]. Sexuality concerns vary widely. There are reports of limitations with erections and ejaculatory difficulties in men [41]. In women there are reports of decreased lubrication [41]. In general, the frequency of sexual activity and intercourse appears to decline after a spinal cord injury [41]. Individuals with spasticity in the hips and thighs also experience challenges as they relate to sexual intimacy [41].

This final section of the chapter will identify how occupational therapy (OT), physical therapy (PT), and rehabilitation counseling approach the topic of sexuality with clients. All three disciplines emphasize the importance of (1) acknowledging sexuality and disability, (2) early initiation of discussions by the healthcare professionals, (3) self-awareness of the healthcare professionals’ attitudes towards sexuality and disability and as their own sexuality, and (4) counseling education.

2.11 Sexuality and disability: A interprofessional perspective

The topic of sexuality has previously been unrecognized or disregarded by many healthcare professionals when addressing clients’ care, holistically [12, 42, 43]. Discussions concerning sex and disability have been particularly arduous. However, over the course of years, the emergence of the identification and acknowledgement that sexuality is important to all human beings has contributed to a positive shift towards acceptance. Consequently, sexuality is slowly becoming a more acceptable topic to discuss and approach in the clinical setting.

Sexuality in healthcare should be approached from an interprofessional perspective. Sexuality is a core aspect of an individual’s overall health that “encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction” ([44] , p. 5). Disciplines within the healthcare realm address these core sexuality aspects in manners specific to their disciplines. Healthcare professionals from various disciplines acknowledge that individuals with disabilities are sexual beings, and that addressing sexuality in practice is integral in providing holistic care. According to Haesler et al. [45], given the strong connection between sexuality and quality of life it is important to understand factors that influence its recognition by health professionals. Despite differences in addressing sexuality, some methods amongst providers are comparable. Furthermore, the practitioners’ “interactions should be directed toward creating an environment that promotes the client’s self-esteem, positive and appropriate sexuality, and adjustment to disability” ([46], p. 214).

2.12 Comfort level and personal bias

Personal bias and comfortability are important elements to consider when creating an environment where sexual issues can be addressed or explored. Healthcare practitioners must be able to express empathy and understanding while maintaining appropriate personal and professional boundaries [9]. Such attributes allow practitioners to establish a therapeutic relationship in which they can build trust and confidence necessary to approach this intimate subject. Practitioners must look inward and conduct a self-assessment of their personal attitudes and beliefs, even before initiating the discussion of sexuality with their clients. Being aware of one’s own sexuality and level of comfort is an essential component when conversing about sexuality [12]. Healthcare personnel should not demand that their clients discuss concerns related to sexuality, but rather create opportunities by obtaining permission to discuss sexuality [47].

To counsel effectively, one must first feel comfortable with one’s own sexuality and then progress to achieving comfort in discussing sexuality with others” ([48], p. 543). Addressing sexuality and disability requires a multifaceted skill-set; one that necessitates factual knowledge, awareness, and interpersonal skills. Health-care professionals’ roles can vary when providing sexuality counseling for people with disabilities [47]. Sexuality training implemented by healthcare practitioners may comprise sex health education and information on related topics and issues such as the physical and psychosocial effects of disability on sexuality, anatomy and development of sexuality, anatomical and systems-related dysfunction, sexual adaptation to functional issues, and appropriate sexual behavior [46, 47, 48]. Due to the sensitive nature of the topic of sexuality, healthcare practitioners have been encouraged to utilize the PLISSIT Model when approaching this topic with their clients.

2.13 Occupational therapy and sexuality

2.13.1 Therapeutic use of occupations and self

OT is a profession in healthcare that involves “the therapeutic use of everyday life occupations with persons, groups, or populations (e.g., the client) for the purpose of enhancing or enabling participation” (c, 2020, p. 1). Occupations are identified as an aspect within the domain of practice for OT and are defined as “everyday activities that people do as individuals, in families, and with communities to occupy time and bring meaning and purpose to life” ([49], p. 7), and the therapeutic use of self is defined as the process “in which OT practitioners develop and manage their therapeutic relationship with clients by using professional reasoning, empathy, and a client-centered, collaborative approach to service delivery” ([49], p. 20). Occupations, along with the therapeutic use of self are cornerstones for this profession.

Studies have shown that “sexuality is important to clients and that occupational therapists believe that addressing clients’ sexual issues is a legitimate domain of practice that should be included in order to provide holistic treatment” ([43], p. 53). In OT, occupations are further categorized in eight broad categories within the OT practice domain: activities of daily living, instrumental activities of daily living, health management, rest and sleep, education, work, play, leisure, and social participation. It is from these broad occupations that occupational therapists approach the topic of sexuality with their clients. OT practitioners recognize sexuality as an important aspect of an individual’s activities of daily living, health management, and social participation, and acknowledge how sexuality directly impacts an individual’s self-esteem and quality of life. In fact, sexual activity, “engaging in the broad possibilities for sexual expression and experiences with self or others (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse)” ([49], p. 30), is specifically identified as an ADL in the Occupational Therapy Practice Framework-IV (OTPF-IV). Along with an individual’s occupation, OT practitioners also recognize an individual’s sexuality as it relates to their roles and routines. Despite the inclusion of sexual activity as an occupation in the OTPF-IV and the acknowledgement of sexuality as a legitimate domain of practice, studies show OT practitioners “do not adequately address sexual activity in their clinical work” [43].

2.13.2 Management of physical and emotional dysfunction

OT practitioners also address sexuality with their clients with disabilities by providing management of physical problems that may contribute to sexual dysfunction through rehabilitation of physical impairments and adaptive modifications. Some areas of physical impairment addressed by OTs include, tone, endurance, mobility, pain, sensation, anxiety, skin care, and hygiene. Occupational therapists provide education and training in the use of adaptive aids, equipment, and positioning for clients who may require special or alternative support to engage in sexual activity. Psychosocial and emotional problems related to self-esteem, body image, and perception are also addressed.

2.14 Physical therapy and sexuality

PT is a healthcare profession that works to “improve quality of life through prescribed exercise, hands-on care, and client education” [50]. PT practitioners also view the client from all aspects of health, thus including sexuality as an integral component to holistic care of their clients [42]. Physical therapists approach sexuality with their clients by addressing “basic sexual function and anatomy, as well as information regarding male and female disorders of sexual function, including the effects of psychological and social factors” [51]. Some areas of physical impairment addressed by physical therapists include muscle strength, tone, mobility, pain, sensation, and reflexes.

2.14.1 Pelvic floor physical therapy

Along with client education, one specific area in which physical therapists address sexuality in practice is through pelvic floor physical therapy (PFPT). This type of therapy comprises various manual therapies such as neuromuscular reeducation and behavioral modifications. PFPT has been successful in treating many sexual disorders [52]. This functional retraining therapy promotes pelvic floor muscle strength, endurance, power, and relaxation in patients with pelvic floor dysfunction [53]. This treatment explores neuromusculoskeletal causes of pelvic floor disorders and how they affect sexual dysfunction. As with other PT treatments, emphasis is placed on the muscles, ligaments, and nerves to improve sexual function. PT practitioners identify that sexual dysfunction is related to disorders of the pelvic floor, whether the cause is over activity or inactivity [52]. PFPT provides an effective basis for addressing sexuality with clients using therapeutic interventions such as strengthening and stretching; trigger point and myofascial release; connective tissue manipulation; electrical nerve stimulation; cold laser therapy; and heat and cold therapy.

2.15 Rehabilitation counseling and sexuality

2.15.1 Counseling and education

Rehabilitation counseling is an allied health profession in which the counseling process is used to assist individuals with disabilities in achieving personal, career, and life goals. The counseling process involves communication, goal setting, and beneficial growth or change through self-advocacy, psychological, vocational, social, and behavioral interventions [54]. Rehabilitation counselors have been identified as the health professional clients with disabilities are more likely to discuss personal issues with ([12], p. 16). Rehabilitation counselors often serve as the bridge between the individual with a disability and a self-sufficient, fully integrated life. Certified rehabilitation counselors (CRCs) are equipped to address the topic of sexuality and disability and provide counseling and education with their clients. The impact of disability on sexuality is listed as one of the core content areas for rehabilitation counseling programs ([55], 5H.2j, Section).

Typically, rehabilitation counselors adhere to two professional Codes of Ethics: The American Counseling Association (ACA) Code of Ethics and the CRC Code of Professional Ethics. However, when dealing with the issue of disability and sexuality, neither code offers specific guidelines on the topic. To remain ethical when dealing with issues of sexuality and disability, Rehabilitation Counselors should consider becoming a member of The American Association of Sexuality Educators, Counselors and Therapists (AASECT) [56]. It is also important to become acquainted with certified sexual education resources offered through programs such as Planned Parenthood and Our Whole Lives (OWL). Certified sexuality educators are trained in and adhere to specific ethical guidelines, including issues such as restrictions on genital touching and may therefore have more specific information and resources available regarding sexuality and disability [57].

2.15.2 PLISSIT method

A counselor’s response to a client’s sexuality concerns can have lasting effects [47]. Given their specialized training in counseling and education, CRCs guide their clients in achieving personal goals related to their sexual health. Rehabilitation counselors can be especially helpful to their clients if they use their disability-related knowledge and rehabilitation counseling skills in conjunction with PLISSIT (Permission, Limited Information, Specific Suggestion, and Intensive Therapy). This is a basic behavioral model of sexuality counseling useful with individuals with disabilities [58, 59]. PLISSIT provides a basis for exploring sexual expression and receiving relevant information on how disability may affect sexuality. The therapy also fosters specific suggestions on how to deal with the effects of disability on sexuality. Through intensive therapy, a client is assisted in coping with issues related to sexuality [58, 59].

3. Conclusion

Individuals with disabilities have the natural biological desires to express and fulfill their sexual desires. As a result, it is imperative that healthcare professionals address sexuality as a part of their intervention in the clinical settings. Although healthcare professionals from various disciplines acknowledge the need to address this intimate topic, there continues to be a disparity between acknowledgement and sexual health intervention as a part of routine care. According to Sengupta and Sakellariou [42], “inclusion of sexuality in education of health care professionals can contribute to integrating this important issue as a routine aspect of practice” (p. 101). Improving the knowledge, training, attitudes, and level of comfortability of the healthcare professional is key in tackling the taboo of sexuality and ensuring clients that it is appropriate to talk about the topic freely. Those who are committed to providing holistic care for people with disabilities will take the necessary actions to stay abreast of issues pertaining to sexuality and disability. There are a number of psychosocial factors that influence the sexuality of individuals with disabilities. In order to determine risk factors and promote protective factors conversations between people with disabilities and counselors and healthcare providers must take place. Moreover, providers have to develop relevant competences, become knowledgeable about sexuality trainings and resources, and be mindful of ethical guidelines. It is also importants for care providers to be cognizant of how certain disabilities and chronic illnesses impact sexuality.