Disability Inclusion in Sexual and Reproductive Health in the United States
Disability Inclusion in Sexual and Reproductive Health in the United States
- Linda Long-BellilLinda Long-BellilDepartment of Family Medicine and Community Health, UMass Chan Medical School
Despite the passage of the Americans with Disabilities Act (ADA) more than 30 years ago, people with disabilities experience significant barriers to exercising their right to sexual and reproductive health throughout their life course. The historical segregation and stigmatization of disabled individuals has created the conditions in which members of this population experience persistent disparities in the prevalence of adverse health conditions and inadequate attention to care, along with disparities in preventive care, health promotion, and access to health care services. These disparities manifest in social services and health care generally and also in the sphere of sexual and reproductive health.
Among many direct care workers, health care providers, and family members, assumptions persist that individuals with disabilities are asexual, unable to exercise informed consent to sexual activity, and unable to carry a pregnancy to term or to parent successfully. These assumptions adversely affect the ability of individuals with disabilities to access basic information about their sexual health and function in order to make informed decisions about their sexual activity, and also impact their access to preventive health screening, contraception, and perinatal care. Inadequate transportation and physically inaccessible environments and equipment such as examination tables pose additional barriers for some disabled individuals. A lack of training in disability-competent care among health care professionals is a pervasive problem and presents yet another challenge to obtaining appropriate and necessary information and care. Despite these barriers, the research shows that more and more women with disabilities are having children, and there is an increasing recognition that people with disabilities have a right to sexual expression and appropriate sexual and reproductive health care , accompanied by a gradual evolution among social services and health care providers to provide the necessary information and support.
- Sexual and Reproductive Health
- Special Populations
Since the Americans with Disabilities Act (ADA) was signed into law more than 30 years ago, substantial progress has been made in improving access to public accommodations, community living, and other aspects of life. Because of this progress and advances in medicine that enhance survival and function, more people with disabilities are aspiring to start families and become active members of their communities (Ibrahim et al., 2016). However, much work is left to do to ensure the right of people with disabilities to sexual and reproductive health. The evidence suggests significant and persistent disparities exist between people with and without disabilities with regard to sexual and reproductive health.
These disparities are rooted in a long history of discrimination against people with disabilities. In the early years of the United States, people with physical, sensory, and intellectual impairments that prevented them from functioning in what was considered a typical or “normal” manner, were generally subject to segregation, first in almshouses and later in institutions. Some were even exhibited as entertainment in venues such as P. T. Barnum’s infamous “freak shows.” Although many of the institutions in which people were segregated were initially established with the intention of providing education and treatment, efforts by reformers to persuade the federal government to adequately fund these institutions were unsuccessful, and the institutions became increasingly custodial in nature and decrepit from the lack of resources. Two exceptions were the schools for blind and deaf children established in the early 19th century, which successfully managed to maintain their focus on education (Shapiro, 1994; Switzer, 2003).
The rise of the eugenics movement in the late 19th and early 20th centuries reinforced these negative attitudes and added an element of menace to society’s perception of people with disabilities. They were not only considered inferior to the nondisabled White northern European heterosexual Protestants who were viewed as the ideal, but the pseudoscience of eugenics characterized them as an actual threat to the human species along with all others who did not fit this description, such as southern Europeans and sexual and gender minorities (Switzer, 2003). This perspective was reflected in the U.S. Supreme Court’s 1927 decision to authorize the forced sterilization of an intellectually disabled woman based on the rationale that “three generations of imbeciles is enough” (Nourse, 2011, p. 101; Greenwood & Wilkinson, 2013). Sterilization became increasingly common, and rates of sterilization still remain higher among intellectually disabled women than among women without disabilities. Women with physical and sensory disabilities also experience higher rates of sterilization (Li et al., 2018; Tilley et al., 2012; Wu et al., 2017a). Evidence further shows that sterilizations occur among women with cognitive, physical, and sensory disabilities at younger ages than women without disabilities (Li et al., 2018). Although it is possible that there may be legitimate reasons for these differences, these higher rates suggest that perhaps more work should be done to ensure the autonomy of women with disabilities over their reproductive health decisions (Li et al., 2018).
It is against this backdrop that one must consider the sexual and reproductive health needs of individuals with disabilities and their ability to meet these and other essential needs in contemporary health care and social services systems. Krahn et al. describe a “cascade of disparities” that affect people with disabilities and undermine their health and well-being (Krahn et al., 2006, p. 71). These include (a) disparities in the prevalence of adverse health conditions, (b) disparities in attention to care, (c) disparities in preventive care and health promotion, and (d) disparities in access to health care services. Although Krahn et al. describe these disparities specifically as they pertain to individuals in a particular disability category (intellectual disability), these same disparities in various forms can also be said to affect virtually all people with disabilities, and they manifest themselves throughout their life cycle as these individuals seek to exercise their right to sexual and reproductive health.
Before delving into the state of sexual and reproductive health for people with disabilities, it is important to define relevant terms. Definitions of disability abound, but for the purposes of this article, it is best to start with the definition of disability accepted worldwide among experts in the field of public health, as described in the International Classification of Functioning, Disability and Health, more commonly known as the “ICF.” Although traditional, medical model definitions of disability describe it solely as a characteristic of the person, the ICF conceptualizes disability as “a dynamic interaction between health conditions (diseases, disorders, injuries, traumas, etc.) and contextual factors,” including both personal and environmental factors (World Health Organization [WHO], 2001, p. 10). This interaction between health conditions and personal and environmental factors leads to limitations in activities and participation restrictions. An activity is defined as “the execution of a task or action by an individual” and activity limitations are “difficulties an individual may have in executing activities” (WHO, 2001, p. 14). Examples of activities might include walking, talking and thinking, Participation is the “involvement in a life situation” and participation restrictions are “problems an individual may experience in involvement in life situations” (WHO, 2001, p. 14). Role participation is a type of participation that is particularly relevant to sexual and reproductive health; examples include those of lover, spouse, and parent (Badley, 2008; Dijkers, 2010; Resnik & Plow, 2009; Whiteneck, 2006).
To describe specific types of disability, various additional definitions are used. This article focuses on intellectual and developmental disabilities, as well as physical and sensory disabilities related to blindness and deafness. The American Association on Intellectual and Developmental Disabilities (AAIDD) defines “intellectual disability” (ID) as “a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills (and) originates before the age of 22” (AAIDD, 2021a). Intellectual disability is a subcategory of “developmental disability.” The Centers for Disease Control (CDC) describes developmental disabilities (DDs) as a “group of conditions due to an impairment in physical, learning, language, or behavior areas . . . [that] begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime” (CDC, 2020). Because of the relationship between these two definitions, the commonly used term “intellectual and developmental disabilities” (IDDs) and is used throughout this article, except when an article cited refers solely to either intellectual or developmental disability, but not both.
There are also various definitions of physical disability. One fairly common one used by the U.S. Census Bureau to describe “conditions that substantially limit one or more basic physical activities such as walking, climbing stairs, reaching, lifting, or carrying” (U.S. Census Bureau, 2021) is used throughout this article.
The term “deafness” indicates “a hearing loss so severe that there is very little or no functional hearing,” whereas the term “hard of hearing” refers to a “hearing loss where there may be enough residual hearing that an auditory device, such as a hearing aid or FM system, provides adequate assistance to process speech” (Washington University, 2019). Blindness is defined in federal law as “central visual acuity of 20/200 or less in the better eye with the use of correcting lens” (§404.1581. Meaning of blindness, n.d.). This definition is commonly used to establish eligibility for a wide variety of state and federal programs, some of which also serve individuals with a lesser degree of visual impairment.
Researchers do not have unanimous agreement on how to ascertain the prevalence of disability by type and overall. Estimates vary depending on the definitions and data sources used. The best current estimate of the prevalence of IDD places it at 1% to 4% of the adult population and does not specify whether this estimate includes all adults or is limited to adults of reproductive age (Bonardi et al., 2020). There are estimates of the prevalence of other disability types among individuals with physical, hearing, and vision-related disabilities among individuals of reproductive age (i.e., 18–44 years). An estimate of the prevalence of physical disabilities based on data from the Behavioral Risk Factor Surveillance System found that 4.8% of the U.S. population ages 18–44 (i.e., reproductive age, at least for women) had difficulties with mobility; 2.7% had difficulties with vision; and 2% reported having difficulties with hearing. The overall prevalence of disability reported in that study among 18- to 44-year-olds was 16.6% (Okoro et al., 2018).
Disability affects members of all communities. Data from the American Community Survey, conducted annually by the U.S. Census Bureau, shows that in 2018, 12.6% of the U.S. population reported having a disability. Comparable percentages of men (12.4%) and women (12.7%) reported having a disability. Among the White population, 13.1% reported a disability as compared to a slightly higher percentage (13.7%) of African Americans who reported a disability. Among Latinos or Hispanics, 8.9% reported a disability, followed by 6.8% of Asians. The racial or ethnic group with the highest rate of disability was Native Americans, of whom 17% reported a disability. Nearly 1 person in 10 (9.3%) of “some other race” reported having a disability (Erickson et al., 2018).
Categories of Health Condition
Disability is not synonymous with poor health. A person can be disabled and also be healthy (Office of the Surgeon General, 2005). That said, adverse health conditions are common among individuals with disabilities. In addition to their underlying disabling condition, individuals with disabilities may experience three types of adverse health condition—associated, comorbid, or secondary conditions. According to the definition offered by Turk (2007), associated conditions are “aspects or features of the primary condition; that is, they are expected elements of its pathology, although their expression may be variable” (Turk, 2007, p. 22). One example relevant to this discussion is epilepsy. Epilepsy, by itself, is a condition that can lead to disability, but epilepsy can also be an associated health condition for many people with intellectual disabilities and some with certain neurological conditions such as cerebral palsy (Bowley & Kerr, 2000; Wallace, 2001). The example of epilepsy is relevant to a discussion of sexual and reproductive health because the interaction of certain anti-seizure medications with hormonal contraception such as birth control pills can reduce the effectiveness of birth control (Johnson, 2018; Kaplan, 2006; Perucca et al., 2014). Additionally, certain anti-seizure medications can harm a developing fetus, contraindicating their use during pregnancy (Pennell, 2016; Perucca et al., 2014).
The precise definition of “comorbid” conditions is a matter of some debate, but one commonly used definition is that these are “health conditions that develop independently of the primary (disabling) condition” (Turk, 2007, p. 142). In the reproductive health context, an example is complications of pregnancy that could occur in anyone, regardless of whether the person has a disability, such as placenta previa in a woman with spina bifida (Krahn et al., 2006; Mitra et al., 2015; Turk, 2007).
Secondary conditions, on the other hand are defined as “any additional physical or mental health condition that occurs as a result of having a primary disabling condition” (Pope & Tarlov, 1991, p. 35). These are frequently, though not always, preventable conditions (Pope & Tarlov, 1991; Turk, 2007). An example that might be relevant in the context of reproductive health for a woman with a mobility impairment such as spinal cord injury or spina bifida is pressure ulcers or urinary tract infections during pregnancy (Mitra et al., 2015). Another example is testicular cancer among men with certain types of intellectual or developmental disability, such as Down syndrome (Sasco et al., 2008) or spina bifida (Agostini et al., 1991).
Sexual and Reproductive Health
Sexual and reproductive health are closely linked. The WHO’s conceptualization of sexual and reproductive health describes them both as being characterized by “a state of physical, emotional, mental and social well-being (and) . . . not merely the absence of disease.” Although it has not finalized its official definition of sexual health,1 the WHO’s working definition of sexual health incorporates this concept and further describes sexual health as a state of well-being “in relation to sexuality” (WHO, 2006).
Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.
Similarly, the WHO’s current definition of reproductive health is that it entails more than being free of disease and infirmity “in all matters relating to the reproductive system and to its functions and processes” (WHO, 2017, p. 2). It incorporates assumptions about the importance of a satisfying sex life and make clear that reproductive health encompasses “the capability and freedom to reproduce if and when desired” (WHO, 2017, p. 2).
People With Disabilities and Sexual and Reproductive Health Throughout Their Life Course
Throughout their life course, people with disabilities experience disparities in preventive care and health promotion and health care access both generally and in sexual and reproductive health. As noted by Krahn et al. (2006), this is in part due to disparities in attention to care. Over the last 30 years, more people with disabilities have been able to live independently in the community and have sought to participate fully in community life, including establishing sexual relationships and all that can ensue from those, for example, dating, marrying or establishing long-term relationships, and having children. Some have been able to achieve their goals without support, whereas others require long-term services and supports (LTSS) such as personal assistance services (PAS), which provide assistance with activities of daily living (ADLs) such as bathing, dressing, and toileting, as well as everyday tasks such as cleaning and grocery shopping, which are commonly described as instrumental activities of daily living (IADLS).
PAS, also known as personal care assistance (PCA), is funded through Medicaid. The nature and amount of personal assistance services varies from state to state, and many people who use these services experience some degree of unmet or undermet need (Kaiser Family Foundation, 2018; Kennedy, 2001; LaPlante et al., 2004; Meucci et al., 2018; Stout et al., 2008). People with unmet needs for personal care may experience a variety of secondary conditions at rates significantly higher than those whose needs are met, such as injuries due to falls, bedsores, and contractures (LaPlante et al., 2004). The inability to get one’s basic needs met can also lead to depression (Stout et al., 2008). These secondary conditions are relevant to sexual and reproductive health because they can lead to significant activity limitations and participation restrictions “by restricting access to socialization, recreation, and vocational pursuits” (Stout et al., 2008, p. 45), thereby limiting the ability of people with disabilities to meet other people in the common ways that lead to a sexual relationship, more permanent commitments, and bearing children.
Access to these kinds of relationships is particularly challenging for people whose disabilities make them more likely to live with family members or in a group setting. For example, some people with intellectual and developmental disabilities (IDD) are able to live independently without support, but many require ongoing services to be maintained safely in the community, on their own, with their families, or in congregate settings such as group homes. Fragmentation of services, funding limitations, and low wages for direct care workers compromise the effectiveness of these services (Friedman, 2019; Hewitt & Larson, 2007; Thomason & Bernhardt, 2017). In one study, people of color with IDD, along with those who are nonverbal or in poor health were significantly more likely to have a higher number of unmet service needs, as were those whose caregivers were younger or from low‐income backgrounds (Burke & Heller, 2017). Again, these unmet needs interfere with the ability of individuals with intellectual disabilities to lead a full life that includes the kinds of activities and connections that might lead them to establish sexual relationships.
Fundamental to the ability to access preventive care and health promotion is an understanding of sexual health and function. People with disabilities experience significant disparities in accessing this essential information. Underlying these disparities may be the assumption that they are asexual or have limited interest in sexual activity (Prilleltensky, 2003; Rohleder, 2010; Silvers et al., 2016). As was noted by one of the early authors on this topic, “Our society sees disability and sexuality as incompatible concepts, the first automatically precluding the second” (Thornton, 1981, p. 229).
This message can be delivered proactively, or it can be conveyed simply by avoiding any discussion of sexuality at all. In a study of teenagers with spina bifida, a congenital disability, 29% of respondents reported that no one had ever discussed sex with them (Sawin et al., 2002). Sex education is frequently delivered in schools, but the evidence shows that youth and adolescents with disabilities are frequently excluded from these curricula (Barnard-Brak et al., 2014; Rohleder, 2010). This is particularly concerning as young people with disabilities may tend to get less information about sexuality from their families and peers and thus may be more reliant on formal sources of sex education (Jahoda & Pownall, 2014; Pownall et al., 2012; Schmidt et al., 2020; Wilson & Frawley, 2016). This lack of access to sex education can leave young people with the sense that they are not sexual beings and decrease the likelihood that they will recognize the critical importance of sexual and reproductive care to their overall health (Welner, 1997). This lack of knowledge may also make them more vulnerable to sexual abuse, sexually transmitted infections, and unintended pregnancy (Barnard-Brak et al., 2014; Streur et al., 2020; Treacy et al., 2018).
Youth and adults with disabilities who identify as lesbian, gay, bisexual, transgender, or questioning (LGBTQ) face additional hurdles. They must juggle multiple stigmatized identities and face the possibility of bullying and rejection by the various communities of which they are a part—the mainstream non-disabled, heterosexual community; the disabled community; and the LGBTQ community (Kahn & Lindstrom, 2015; Santinele Martino, 2017). Additionally, even when these individuals do receive sex education, the content generally focuses on heterosexual activity. Similarly, when health care providers acknowledge disabled people as sexual beings rather than as asexual, they frequently provide care in a manner that is heteronormative (Santinele Martino, 2017).
Research shows that young Deaf adolescents and adults, along with those who are blind lack critical information as well (Job, 2004; Joseph et al., 1995; Kapperman & Kelly, 2013; Kelly et al., 2015; Smith et al., 2012; Wild et al., 2014). Deaf people have been shown to have less knowledge about contraception than hearing individuals (Horner-Johnson, Moe, et al., 2019). Blind people report that sex education provided to them is often done in a standard format without the use of strategies that would make the information more meaningful to them, such as role plays, tactile graphics, electronic materials, anatomically correct models, or even explicit talk (Wild et al., 2014).
Several studies have also documented a lack of information about sexuality provided to people with acquired disabilities, such as spinal cord injury, where rehabilitation efforts are frequently focused largely on maximizing functional abilities and working toward independence rather than addressing the impact of their new disability on their sexual function and expression. Additionally, any information provided may be based on heteronormative assumptions (Aikman et al., 2018; Charlifue et al., 1992; Connell et al., 2014; Parker & Yau, 2012; Santinele Martino, 2017; Singh & Sharma, 2005; Westgren et al., 1997; White et al., 1993).
Individuals with intellectual disabilities also face additional hurdles to expressing themselves sexually. It was only in 2008 that the American Association of Intellectual and Developmental Disabilities (AAIDD) and the ARC, one of the premier advocacy organizations for people with IDD, issued a joint position statement, later amended in 2013, which affirmed that
every person has the right to exercise choices regarding sexual expression and social relationships. The presence of IDD, regardless of severity, does not, in itself, justify loss of rights related to sexuality. (AAIDD and The ARC, 2008/2013)
The note in this position statement that IDD “in itself” does not justify the abrogation of sexual rights leaves the door open to concerns about the capacity of individuals with IDD to understand the implications of, and consent to, sexual activity (AAIDD, 2021b).
Capacity to consent is an issue that has historically been raised to justify preventing any sexual activity by persons with intellectual disabilities regardless of their age, their degree of their intellectual limitation, or individual circumstances. This prohibition has arisen from family members’ and staff’s sincere and, at times, justified concerns about sexual abuse, along with a related concern about liability by group homes and other providers (McGuire & Bayley, 2011). Gender-based stereotypes of both men and women with intellectual disabilities are another factor underlying this concern, with intellectually disabled men perceived as potentially hypersexualized and aggressive while intellectually disabled women are viewed as “perpetual children” who are particularly vulnerable to abuse. Concomitant with worries about abuse are also fears about unintended pregnancy among women with intellectual disabilities (Coleman et al., 2015; Dukes & McGuire, 2009; Kramers-Olen, 2016; Young et al., 2012).
Individuals with intellectual disabilities who may be exploring their sexuality as lesbian, gay, bisexual, transgender, questioning, or otherwise (LGBTQ) face additional barriers to sexual expression. Some refer to these individuals as an “invisible” minority because their sexuality and resultant needs are often even more overlooked or constrained than those of other individuals with IDD (Blanchett, 2002). They may have even more difficult challenges in overcoming the fears of parents and group home staff in order to explore their sexuality and may face additional hurdles in obtaining appropriate sexual and reproductive health education and care (Abbott & Haworth, 2007; McCann et al., 2016; McGuire & Bayley, 2011).
As indicated by the AAIDD/ARC position statement, the voices of self-advocates with intellectual disabilities and their allies in the parent and provider communities have gradually led to greater awareness of the need for a more nuanced approach to the sexual needs of persons with intellectual disabilities (Greenwood & Wilkinson, 2013). This perspective emphasizes an individualized approach to questions about a person’s capacity to consent that strikes “a balance between empowering people to claim their sexual rights and protecting them from abuse” (Murphy & O’Callaghan, 2004). This approach further encourages families and providers to address the sexual needs of individuals with intellectual disabilities through education and discussion with the individual, and even the use of instruments that can be utilized to assess an individual’s capacity to consent to sexual activity (Galea et al., 2004; Thompson et al., 2016). Experts in the field have suggested that efforts to educate adults with intellectual disabilities should include decision-making skills and an emphasis on practical and person-centered planning (Aunos & Feldman, 2002; Dukes & McGuire, 2009; Greenwood & Wilkinson, 2013; Lumley & Scotti, 2001). Despite these efforts, there is still significant progress to be made on this issue (McGuire & Bayley, 2011; Sinclair et al., 2015; Treacy et al., 2018).
Another type of preventive health care service to which people with disabilities encounter barriers to access is cancer screening (Edwards et al., 2020; Havercamp & Scott, 2015; Reichard et al., 2011). The limited literature that exists regarding prostate cancer screening yields mixed results when comparing rates of screening for men with disabilities as compared to those without disabilities (Edwards et al., 2020). There is some evidence that men with IDD, in particular, may be less likely to be screened for prostate cancer (Havercamp & Scott, 2015).
There is also substantial evidence that women with disabilities are less likely to be screened for breast cancer (Edwards et al., 2020; Havercamp & Scott, 2015; Iezzoni et al., 2015a; Reichard et al., 2011) and that the disparity is increasing over time (Iezzoni et al., 2015a). Specific disability-related factors that have been found to be associated with decreased participation in mammography among women with physical disabilities include having major lower-limb difficulties, being non-ambulatory, using mobility devices, being distant from mammography facilities, or having a relative who serves as the main caregiver as compared to a spouse or partner caregiver (Barrett & Roberts, 2010; Cheng et al., 2001; Edwards et al., 2020; Iezzoni et al., 2010; Jamoom et al., 2008; Weir et al., 2011). There is evidence that this disparity increases with the level of severity of disability (Guilcher et al., 2014).
Similarly, research has found lower rates of cervical cancer screening rates among women with disabilities as compared to nondisabled women. As with breast cancer, predictors of lower access to cervical cancer screening for women with disabilities included lower limb difficulties and receiving care from a relative caregiver as compared to receiving care from a spouse or partner. The predictors also included requiring assistance with activities of daily living (Edwards et al., 2020; Jamoom et al., 2008).
Women with cognitive disabilities, which includes IDD, are also less likely to have pap smears and mammograms than nondisabled women (Horner-Johnson et al., 2015; Reichard et al., 2011). Additionally, one study showed that rural women with disabilities were even less likely than other disabled women to have a current pap smear or breast cancer screening, and rates for all women with disabilities were significantly lower when compared to women without disabilities (Horner-Johnson et al., 2015).
In their synthesis of the literature, Edwards et al. identified several additional barriers that impeded access to preventative cancer screening for adults with physical disabilities. These barriers affected both men and women and included internal factors such as the individual’s own lack of knowledge and belief systems about health and screening. They also included time constraints, competing priorities, and simply forgetting appointments. Yet another barrier was the nature of respondents’ interactions with health care providers in which the providers exhibited poor attitudes and behaviors accompanied by a lack of provider knowledge and sensitivity. Additionally, some women described providers not valuing them as experts in their underlying disabling conditions. Perhaps related to all of these concerns was a failure by their health care provider to make the appropriate referrals or provide necessary information. Financial concerns and lack of reliable transportation were also concerns for both men and women with physical disabilities (Edwards et al., 2020).
Yet another barrier was the inaccessibility of health care providers’ offices and of the equipment within those offices, such as exam tables. Women, in particular, described difficulties they had with positioning themselves to make it possible for a health care provider to conduct an appropriate gynecological exam or do a pap smear. Similarly, they described difficulties in standing and positioning themselves for a mammogram (Edwards et al., 2020). All of these interpersonal and environmental factors combined put people with physical disabilities at risk for lower participation in screening and delayed cancer diagnoses (Edwards et al., 2020).
Research shows that Deaf and hard-of-hearing adults tend to have comparatively low levels of understanding of topics such as cancer (Zazove, 2009). Additionally, Deaf women may have lower rates of adherence to recommendations for cervical cancer screening (Kushalnagar et al., 2019). This lack of knowledge has the potential to put them at greater risk of developing these diseases. Additionally, individuals who are blind or visually impaired report similar difficulties with access to information, particularly to written health materials, which are frequently offered in formats that are not accessible to them (Harrison et al., 2010).
Screening for sexually transmitted infections (STIs) is another important aspect of sexual and reproductive health. The evidence regarding screening among people with disabilities is limited. Several studies suggest that people with intellectual disabilities have an inadequate understanding of STIs, how they are transmitted, and their level of risk for acquiring one (Galea et al., 2004; Mandell et al., 2008; Schaafsma et al., 2017). Some evidence suggests that these individuals are less likely than other adults to be tested for human immunodeficiency virus (HIV) (Greenwood & Wilkinson, 2013; Groce et al., 2013; McGillivray, 1999). Other studies have found higher rates of STIs among individuals with intellectual disabilities than among the general population (Baines et al., 2018; Mandell et al., 2008).
There are also concerns about disparities with respect to screening for STIs among those with physical disabilities. Specifically with regard to HIV and AIDS, a comprehensive review of the literature noted that there is a paucity of studies that examine the prevalence of HIV among individuals with physical disabilities (Groce et al., 2013). On the other hand, in their seminal work documenting the sexual and reproductive health experiences of women with physical disabilities, Nosek et al. found that rates of STIs among women with physical disabilities were similar to those of women without disabilities (Nosek et al., 2001). One concern that has been raised by multiple authors is that women with physical disabilities, because of a lack of sensation or other factors, may be less able than other women to detect the pain and cramping that may signify the presence of an STI or other gynecological issue, therefore underscoring the need for health providers to be particularly vigilant in inquiring about the possibility of any STIs or other issues in discussions with their physically disabled patients (Crabb et al., 2020; Jackson & Wadley, 1999; Welner, 2000).
Individuals with sensory impairments that affect hearing and vision also experience disparities in access to health screening for similar reasons to those reported by other individuals with disabilities. Research shows that Deaf and hard-of-hearing adults tend to have comparatively low levels of understanding of HIV prevention (Zazove, 2009). Efforts to screen people who are Deaf or hard of hearing for STIs or other health concerns are impeded by their lack of access to health information that is typically available to hearing people through mass media, health education, and communication with a health care provider. This lack of access may contribute to lower health literacy among members of this population.
There is a remarkably small body of literature on the topic of health disparities experienced by disabled people of color. Only a handful of studies exist on this topic, which focus on health disparities of people of color with IDD. In some instances, the findings of these studies conflict. For example, a study conducted in North Carolina in 2013 found that African American women with IDD were significantly less likely to have a mammogram than White women with the same type of disability IDD (Parish et al., 2013). A subsequent study of individuals receiving government disability services in 25 states showed that African Americans with IDD were actually more likely than members of other racial or ethnic groups to have been screened for cancer, while Latinos were significantly less likely than White people to have been screened for cancer (Scott & Havercamp, 2014). Yet a third study of women with intellectual disabilities in Philadelphia found that both African American and Latina women with intellectual disabilities were more likely to get a mammogram every 2 years than intellectually disabled White women (Arana et al., 2019). It is possible that the differences in these findings are the result of the geographic locations from which data were drawn, but further investigation of this topic is necessary.
Access to screening and preventive services is important to the health of disabled people for multiple reasons. In addition to protecting their health, another reason that providers should be vigilant in inquiring about STIs among people with all types of disability, whether physical, intellectual, developmental, or otherwise, is that that STIs can be an indicator of sexual abuse, which unfortunately is common among members of this population (Crabb et al., 2020; Greenwood & Wilkinson, 2013; Groce et al., 2013; Schmidt et al., 2020).
The fertility rate of a population is generally measured using the general fertility rate (GFR) and the age-specific fertility rate (ASFR). The World Health Organization defines the GSR as the number of singleton and multiple live births to 15- to 49-year-old women in a given year for every 1,000 women in that age group. The WHO calculates the ASFR in the same manner, but delimited by 5-year age bands (15–19, 20–24, 25–29, 30–34, 35–39, 40–44, and 45–49 years) to measure age patterns of fertility (WHO, 2011).
A review of the literature found no studies reporting the GFR or AFSR for women with disabilities in the United States. A study comparing the GFR and AFSR of women with IDD in the Canadian province of Ontario found that the GFR in women with IDD (20.3 per 1,000) was significantly lower than the GSR for women without IDD (43.4 per 1,000) (Brown et al., 2016). Similarly, it was lower for women with IDD ages 25 and older, but the difference in ASFRs for women with and without IDD in the 18- to 24-year-old age category was not statistically significant. Similarly, a U.S.-based study of fecundity, that is, the probability of conceiving within a menstrual cycle for a woman having regular unprotected intercourse, showed that women with cognitive disability (a broader category that includes but is not limited to women with intellectual disabilities) were significantly less likely to become pregnant within a 1-year period than those without disabilities. There were no significant differences in fecundity between women with physical or sensory disabilities and women without disabilities (Buck, 2011; Zhang et al., 2019). More research is necessary to understand the reasons for the differences in the fertility rate and the rate of fecundity among women with IDD and cognitive limitations compared to nondisabled (Horner-Johnson et al., 2016). It could be that the disparities in income and other socioeconomic factors play a role, or these differences could be attributable to the history of sterilization of women with intellectual disabilities or the possibility that they may be more likely to live in congregate settings such as group homes, where there would be fewer opportunities for sexual activity.
Most women with disabilities are able to bear children (Signore et al., 2011). When a woman with a disability does have concerns with infertility, she may experience discrimination in obtaining infertility treatment. Again, assumptions that a disabled woman is asexual or an assumption that she will not be a competent parent may act as a barrier to obtaining these services. There are reports of health care providers withholding infertility treatment because of concerns about a woman’s ability to parent, fear of litigation due to the possibility of changes in maternal health, or concerns about the potential for congenital anomalies in the infant (Piotroski & Snell, 2007).
Most men with disabilities are also able to produce children, but for some men with disabilities, infertility is an associated condition. Lower rates of fertility have been found among men with specific types of intellectual disability such as Noonan syndrome and also among men with certain physically disabling conditions such as myotonic dystrophy and spinal cord injury (Carroll, 2018; Ibrahim et al., 2016). That said, many men with disabilities have fathered children, some without assistance and others through the use of various medical interventions. For example, significant advances have been made in the development of interventions to assist men with spinal cord injuries and similar conditions to make assisted conception feasible for these men and their partners (Ibrahim et al., 2016). In some instances, men with disabilities may also face discrimination in obtaining assisted reproduction services.
In addition to a lack of access to health screening, people with disabilities experience barriers in obtaining access to other health services. A fundamental aspect of the right to sexual expression and sexual and reproductive health for all individuals, including individuals with disabilities, is having the information necessary to make informed decisions about whether to have children and, if so, when to have them and under what circumstances. Yet another disparity experienced by people with disabilities is a lack of comprehensive information about contraception. This lack of access affects all people with disabilities regardless of whether their disabilities have a childhood or adult onset. Because of the difficulties that young people with disabilities may have with accessing necessary and appropriate sex education, their knowledge of their capacity for bearing children and options for contraception may be limited (Barnard-Brak et al., 2014; Rohleder, 2010; Treacy et al., 2018). In one qualitative study of knowledge about reproductive health among women with spina bifida by Streur et al. (2020), women reported that their sex education at school, at home, and from information online was inadequate to address their diagnosis-specific concerns about fertility and pregnancy. They further reported that this topic “was not properly addressed, [was] completely ignored, or false information was given by providers, including obstetricians, primary care physicians, and SB specialists” (Streur et al., 2020, p. 5), leading to uncertainty among the women interviewed about their ability to get pregnant. Several of the women interviewed reported that they had, in fact, experienced an unintended pregnancy directly related to the fact that they believed that they could not get pregnant (Streur et al., 2020). In yet another study, providers who engaged in contraceptive counseling initiated such discussions with physically disabled women of childbearing age significantly less often than they initiated them with nondisabled women (Taouk et al., 2018).
There may be multiple reasons for the failure of clinicians to adequately inform women about their capacity for pregnancy and options for birth control. Access to contraception is yet another area in which a provider’s misguided assumption that a woman with a disability is asexual may pose a barrier to appropriate sexual and reproductive health care . Providers may feel that asking a woman with a disability about her interest in or need for contraception is simply unnecessary as she will never be sexually active (Greenwood & Wilkinson, 2013; Kaplan, 2006). The access of women with disabilities to contraception may be further compromised by a lack of provider understanding about their disability-related needs (Becker et al., 1997; Crabb et al., 2020; Kaplan, 2006; Nosek et al., 1995). In a study of obstetrician-gynecologists, Taouk and her colleagues found that only about 17% of physicians said that they had received any training on care for women with disabilities, and only about 19% said that they felt adequately equipped to care for women with disabilities (Taouk et al., 2018). This lack of physician preparation is a serious concern because women with certain disabilities may have specific concerns regarding the use of contraception that may need to be addressed. For example, some birth control methods such as hormonal contraceptives may be contraindicated for women with disabilities such as those that involve paralysis and hence poor circulation, because of the increased risk of deep venous thrombosis (Crabb et al., 2020; Kaplan, 2006; Pymar & Creinin, 2001; Wu et al., 2017b). Anti-seizure medications may interact with some types of hormonal contraception and reduce their effectiveness (Johnson, 2018; Kaplan, 2006; Perucca et al., 2014). Other methods of contraception, such as diaphragms, may be difficult for a woman to use if she has limited use of her hands (Becker et al., 1997; Crabb et al., 2020; Kaplan, 2006; Nosek et al., 2001).
Clinicians who have not been appropriately trained may not be aware of some of these concerns and therefore may not give women individualized advice about the selection of a birth control method that takes their disability-related needs into account (Becker et al., 1997; Crabb et al., 2020; Kaplan, 2006; Nosek et al., 2001). Additionally, clinicians may be unprepared even to provide an appropriate physical exam, which can be complicated by spasticity; limited range of motion; or, for women with paralysis above the level of the T6 vertebrae, autonomic dysreflexia, a condition that involves a rapid and potentially life-threatening increase in blood pressure, which can sometimes occur during a gynecological examination (Kaplan, 2006).This lack of preparedness among clinicians is often exacerbated by a lack of disability-focused clinical guidelines and the physical inaccessibility of clinician’s offices and equipment (Kaplan, 2006).
Individuals with intellectual disabilities may have limited knowledge about contraception and the need for its use (Galea et al., 2004; Horner-Johnson et al., 2019; Leutar & Mihokovic, 2007; McCarthy, 2009; Sinclair et al., 2015). This lack of understanding can encompass a wide range of basic facts about contraception, such as the fact that the purpose of contraception is to prevent pregnancy, as well as knowledge about which parts of the body are involved in pregnancy and condom use (Leutar & Mihokovic, 2007; McCarthy, 2009). Additionally, individuals with intellectual disabilities may frequently be accompanied to their medical appointment by a parent or staff caregiver and may have little autonomy over their choices regarding contraception, even when they have only mild or moderate levels of intellectual impairment (McCarthy, 2009).
There is evidence that, over time, more and more women with disabilities are becoming mothers. Horner-Johnson et al. (2017) found a significant increase in the percentage of women with disabilities in California who had given birth between 2000 and 2010. A study of women with spina bifida found that deliveries had increased among these women by 56% between 2003 and 2013 (Shepard et al., 2018). A study of women with a broader group of women with chronic physical disabilities showed no statistically significant difference in the odds ratios measuring likelihood of pregnancy between women with and without disabilities (Iezzoni et al., 2013). There is evidence that the birth rate among woman with disabilities has increased to such an extent that the percentage of disabled women who give birth is comparable to the birth rate among women without disabilities (Horner-Johnson et al., 2016).
These trends are reflected in other research showing that many women with disabilities wish to become mothers. Shandra et al. compared the attitudes of women with and without disabilities toward having children and found that childless women with disabilities were equally likely to want children as childless women without disabilities and that disabled mothers were significantly more likely to want to have more children than mothers without disabilities. However, disabled mothers’ intentions to actually have a child and their level of uncertainty about whether they would have children were significantly lower. These differences were not explained by demographic differences and raise the question about whether these women’s doubts resulted from the barriers they had encountered in finding adequate obstetric care, or whether they resulted from the women’s uncertainty about their ability to have children or their concerns about the potential impact on their health and functional status (Shandra et al., 2014).
There is evidence that women with disabilities as a group may enter pregnancy with more factors that could negatively impact their pregnancy experiences. In a study of preconception risk factors, Mitra, Akobirshoev, et al. (2016) found that women with disabilities were more likely than nondisabled women to report being in fair or poor health, to be less likely to exercise and to be obese, to smoke, to report having diabetes or asthma, and to experience mental distress and lack of emotional support. In a systematic review and meta-analysis, Tarasoff et al. (2020) found that women with disabilities as a group had an elevated risk for hypertensive disorders and Cesarean delivery. These women also had an increased risk for emergency department visits and hospital admissions in pregnancy.
Women with disabilities do report encountering substantial barriers to care. One barrier that women report is that health care professionals frequently possess negative stereotypes about their sexuality because of their disabilities (Becker et al., 1997; Beckmann et al., 1989; Mitra, Long-Bellil, et al., 2016; Nosek et al., 1995; Prilleltensky, 2003; Signore et al., 2011). For some clinicians, and for some in society as a whole, the label of “disabled” is all encompassing, and other aspects of identity are rendered meaningless. Given this tunnel vision, expanding the clinician’s view to include not only a disabled female’s womanhood but also her pregnancy and impending role as a mother can be particularly challenging (Mayes et al., 2011; Signore, 2016).
Managing pregnancy in any woman requires close monitoring. Although health care providers are required to provide reasonable accommodations to people with disabilities under the Americans with Disabilities Act, women with physical disabilities frequently encounter physical barriers to the proper monitoring of pregnancy, such as inaccessible examination tables and weight scales (Becker et al., 1997; Iezzoni et al., 2015a; Lagu et al., 2013; Mitra, Long-Bellil, et al., 2016; Nosek et al., 2001; Prilleltensky, 2003). It is not unusual for women with physical disabilities to describe having gone through their entire pregnancies without ever having been weighed, which puts them at risk for preeclampsia and puts the fetus at risk for low birth weight (Iezzoni et al., 2015c; Lagu et al., 2015; Lipson, 2000; Mitra, Long-Bellil, et al., 2016; Smeltzer, 2007). The lack of accessible examination tables can discourage clinicians from conducting a proper physical exam of the pregnant woman and can even discourage them from accepting these woman into their practice at all. In a survey of subspecialty practices in four cities, Lagu et al. (2013) found that 44% of gynecology practices reported that they could not accommodate a disabled patient (Lagu et al., 2013). In addition to physical barriers, financial barriers and inadequate insurance coverage may also compromise care.
Although most women with physical disabilities have successful birth outcomes, the literature suggests that, depending on the specific diagnosis and severity of their disabling condition, these women may experience an elevated risk of certain complications and secondary conditions as compared to nondisabled women (Long-Bellil et al., 2017b; Morton et al., 2013; Signore et al., 2011; Signore, 2016; Sterling et al., 2013). For example, all pregnant women are at increased risk of urinary tract infections (UTIs), but women with certain disabling conditions such as spinal cord injury may be significantly more likely to get a UTI during pregnancy (Signore et al., 2011). Women with disabilities such as spinal muscular atrophy or osteogenesis imperfecta may be at risk of restrictive lung disease because of their typically short stature (Abati & Corti, 2018; Cozzolino et al., 2016). These complications pose challenges for women with physical disabilities during pregnancy, but they can frequently be managed in a way that leads to positive outcomes (Morton et al., 2013). One positive piece of evidence identified by Tarasoff et al. (2020) in a systematic review and analysis is that physically disabled women were more likely than women without disabilities to initiate care early in their pregnancy and to have a greater number of prenatal visits than nondisabled women (Tarasoff et al., 2020).
Depending on severity, disabling conditions such as spinal cord injury, spina bifida, and others may at times pose challenges for labor and delivery because of factors such as inability to detect contractions, poor range of motion, and autonomic dysreflexia (Baker & Cardenas, 1996; Jackson & Wadley, 1999; Shepard et al., 2019; Signore et al., 2011). Additionally, there are relatively high rates of C-section among with women with physical disabilities (Tarasoff et al., 2020). There is evidence that a meaningful percentage of these C-sections are performed even though there is no medical indication for the procedure (Biel et al., 2020). C-section is a major surgical procedure, and C-sections without any medical indication may create unnecessary risks for these women (Biel et al., 2020; Shepard et al., 2018). Another issue related to labor and delivery is that some women with physical disabilities report little attention or choice being given to them regarding the type of anesthesia, for example, epidural or general anesthesia, used during that process. The evidence shows that a lack of advanced planning, blanket assumptions about the type of anesthesia required, and inexperience on the part of the anesthesiologist may deprive women of the information they need to make informed choices about this important aspect of labor and delivery (Long-Bellil et al., 2017a; Smeltzer et al., 2017).
There is also some evidence that infants born to women with certain physically disabling conditions may be at greater risk of negative birth outcomes such as low birth weight and preterm delivery. In many, though not all, instances, the absolute risk will be small, but these risks may be elevated as compared to those for women without disabilities (Signore, 2016).
Several factors could contribute to the complications and birth outcomes experienced by women with physical disabilities. Women with these disabilities report that their clinicians frequently lack knowledge and experience with their obstetric care (Mitra et al., 2017). Clinicians themselves report little to no formal training about how to provide perinatal care to these women. Instead, they report the need to learn “on the job” (Smeltzer et al., 2018). There is also a dearth of knowledge about what appropriate care would necessarily entail for women with specific diagnoses and few guidelines to inform care. Obstetric clinicians do not always consult with the specialists who provide care for a woman’s disability and so may be unaware of certain important considerations for her care (Lipson, 2000; Signore et al., 2011; Smeltzer, 2007). Exacerbating the challenges posed by this lack of training is that physicians may be influenced by the broader culture to hold negative attitudes about childbearing among women with disabilities (Edwards et al., 2020; Mayes et al., 2011; Mitra, Long-Bellil, et al., 2016).
Women with IDD may experience similar challenges with obstetric clinicians who are inexperienced in meeting their needs. Obstetric clinicians may have limited experience in communicating with people with intellectual disabilities and may struggle to convey important information in a manner that the woman may understand (Wilkinson et al., 2012). They may also have negative assumptions about the capacity of women with IDD to parent (Greenwood & Wilkinson, 2013). These women may also be at elevated risk for complications. Parish et al. (2015) found that women with IDD were significantly more likely than women in the general obstetric population to experience preeclampsia or hypertensive complications and to require Cesarean delivery. They also found that women with IDD were significantly more likely to have early or threatened labor, preterm birth, or other complications. They suggested that the observed disparities in pregnancy outcomes for women with IDD could have resulted from a variety of factors including genetics, social circumstances, environmental conditions, and barriers to access to health promotion and clinical care (Parish et al., 2015). Another interesting study by Horner-Johnson et al. (2019) showed that women with IDD were significantly more likely than nondisabled women to wait until the second or third trimester of pregnancy to initiate prenatal care, which indirectly raises similar questions about the circumstances and potential barriers to access that may lead to their seeking care so late in their pregnancies.
There is evidence that Deaf and hard-of-hearing women may also experience disparities related to pregnancy. A study of Deaf and hard-of-hearing women in Massachusetts found that, although the absolute risk was quite small, these women were significantly more likely than hearing women to experience several pregnancy complications, including preexisting diabetes, gestational diabetes, pre-eclampsia and eclampsia, and placental abruption. They were also significantly more likely to have adverse birth outcomes, including preterm birth, low birth weight or very low weight, and low Apgar scores (Mitra, Akobirshoev, et al., 2020). These findings were consistent with a previous study conducted by the same researchers (Mitra, Akobirshoev, et al., 2016). By contrast, a 2017 study by Schiff et al., using data from the state of Washington, found that risks for most adverse pregnancy and neonatal outcomes were similar for deaf women and hearing women (Schiff et al., 2017). In a study by Horner-Johnson et al. (2019), these women were found also to be significantly more likely to initiate prenatal care in the second or third trimester.
A study of the experiences of blind and visually impaired women found that women with vision impairments were significantly more likely than nondisabled women to deliver by C‑section (Darney et al., 2017). Yet another study found that women with vision impairments were more likely than nondisabled women to initiate prenatal care in the first trimester, but were at significantly more risk of having fewer prenatal visits (Horner-Johnson et al., 2019).
The topic of health disparities related to pregnancy among disabled women of color is an understudied area of inquiry. It is well-documented that Black and Latina women in the general population experience significant disparities in access to perinatal care services and may receive less adequate services when they do receive care (Cox et al., 2011; Gavin et al., 2004; Kuo et al., 2008). Black and Latina women are more likely than White women to experience maternal mortality and morbidity and to experience adverse birth outcomes, such as low birth weight, preterm birth, stillbirth, and infant death (Dominguez, 2008; Howell, 2018; Parish et al., 2015; Zhang et al., 2013). By contrast, the study of disparities in access to perinatal care and birth outcomes among women of color with disabilities is in its infancy. The only relevant study found in the preparation of this article was one conducted by Akobirshoev et al. (2019) that compared birth outcomes by race among women with IDD residing in Massachusetts. It showed that there were significantly more stillbirths among African American and Latina women with IDD as compared to White women, but no significant differences in rates of Cesarean delivery, preterm birth, or small-for-gestational-age neonates among women with IDD. Much more research on this topic is needed to truly understand how the intersection of race and disability may affect the pregnancy experiences of women of color.
All women with disabilities who desire to become mothers need information about the potential risks of pregnancy, including disability-related risks, in order to make informed decisions about childbearing. Advance planning, including pre-conception counseling when possible, is key, and it may be necessary for obstetric clinicians to utilize a team-based approach in collaboration with specialists who provide disability-related care (Horner-Johnson et al., 2016; Iezzoni et al., 2015b; Long-Bellil et al., 2017b; Tarasoff et al., 2020). Although there is an emerging body of research on pregnancy among women with disabilities, more research is needed to provide women with the individualized, diagnosis-specific information that they need in order to make informed decisions (Horner-Johnson et al., 2016; Iezzoni et al., 2015b; Long-Bellil et al., 2017b; Tarasoff et al., 2020).
Summary and Conclusion
People with disabilities face a cascade of disparities that compromise their sexual and reproductive health and undermine their ability to exercise their right to assume the roles of lover, spouse, and parent. The disparities start with a lack of access to information about their own sexuality—how their bodies function and the pleasures and perils of sexual activity. Educators, parents, caregivers, and support staff must ensure that this content is delivered in schools, the home, and congregate settings. This information should be provided in a manner that is engaging and that is appropriate to the person’s stage of life and cognitive level. Providing this education requires that these individuals accept and support the right of people with disabilities to sexual expression.
Society must address the disparities in attention to and resources for the support services that result in chronically unmet and under-met needs among people with disabilities. These services must be adequately funded and better designed to safeguard the health of disabled people and maximize their ability to participate in work, recreation, and socialization, thereby expanding their opportunities to be integrated into the community and establish relationships that may lead to opportunities for sexual expression, long-term romantic partnerships and marriage, and raising families.
Medical schools, residency and other health professions programs need to incorporate training about the sexual and reproductive health needs of people with disabilities into their curricula to address the negative assumptions that people entering the health professions may hold. They should prepare their students to understand that people with disabilities have sexual needs and may aspire to have sexual relationships and long-term commitments and to bear children. They should prepare clinicians who work with transition-age youth and adults with disabilities to provide them with information about how their bodies function sexually and to address questions about childbearing, contraception, and STIs.
They should additionally prepare obstetric clinicians to address the needs of women with disabilities who wish to have children from preconception to postpartum, so that these clinicians understand these women’s needs and are aware of the importance of advanced planning and the benefits of collaborating with clinicians with disability-related expertise as part of an integrated, interdisciplinary team to improve pregnancy planning and management. Additional diagnosis-specific clinical research is needed to provide these clinicians and the women they serve with more information on potential pregnancy complications and options for labor and delivery (Iezzoni et al., 2015b; Long-Bellil et al., 2017b).
More work is necessary to ensure the inclusion of sexual and reproductive health in the promise of equality and integration envisioned in the Americans with Disabilities Act. It requires ongoing action by educators, clinicians, parents, caregivers, and support persons, along with people with disabilities themselves. Only then will the goal of inclusion and full participation in society envisioned in the ADA become a reality.
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1. It should be noted that this definition does not represent an official WHO position and should not be used or quoted as such. It is offered instead as a contribution to ongoing discussion about sexual health.
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