Sexual Psychology – Critical Reflection #4 – Due Fri 12/3

C O M M E N T A R Y

Asexuality and Disability: Strange but Compatible Bedfellows

Emily M. Lund • Bayley A. Johnson

Published online: 27 September 2014 � Springer Science+Business Media New York 2014

Abstract While the disability sexuality movement has long tried to distance itself from the usually incorrect assumption that people with disabilities are asexual, the growing

asexuality visibility and education movement argues for recognition of asexuality—the

lifelong, non-distressing absence of sexual attraction to people of any sex or gender—as a

legitimate and non-pathological sexual orientation. Despite these seemly contradictory

goals, however, both movements are representative of the movements of historically

marginalized and medicalized groups towards greater acceptance and understanding.

Accordingly, this article will begin with a brief discussion of theories and terminology

related to asexuality in the general population. The remainder of the article will discuss (1)

the history of asexuality as a forced assumption of people with disabilities; (2) intersec-

tionality as it relates to asexuality and disability; and (3) the similarities between the

asexuality and disability sexuality movements. Suggestions for future research are also

provided.

Keywords Sexuality � Asexuality � Sexuality and disability � Disability � Sexual orientation � United States

Modern scholarship and grassroots organization have seen the growth of two separate

social movements, the disability sexuality movement and the asexuality visibility and

education movement. The former seeks to throw off the unwanted label of asexuality [15]

while the latter seeks to promote the recognition of asexuality—commonly defined as the

lack of sexual attraction to people of any gender [4] or the lifelong and non-distressing lack

E. M. Lund (&) Department of Special Education and Rehabilitation, Utah State University, Logan, UT 84322, USA e-mail: [email protected]; [email protected]

B. A. Johnson Multnomah University, Portland, OR, USA

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Sex Disabil (2015) 33:123–132 DOI 10.1007/s11195-014-9378-0

of sexual desire [6]—as a legitimate sexuality orientation analogous to heterosexuality,

homosexuality, and bisexuality. Although this conceptualization of asexuality has been

met with some skepticism from the medical and psychological communities, a growing

body of empirical literature on the topic supports the idea that asexuality can be a benign

and immutable sexual orientation rather than a pathology. To this end, AVEN was founded

in 2001 with the goals of ‘‘creating public acceptance and discussion of asexuality and

facilitating the growth of an asexual community’’ [3] and hosts information on asexuality

as well as discussion forums for the discussion of asexuality and related topics.

Parallel to growing movement for recognition among self-identified asexual people,

individuals with disabilities have long been working to have their sexuality recognized and

given legitimacy [22]. Historically, people with disabilities have been incorrectly assumed

to lack sexual desire and function. As a result, those involved in the disability sexuality

movement are often opposed to the idea of asexuality in the context of disability, seeing it

as a wrongful label forcibly placed on them by a society that is ill-informed at best and

oppressive at worst [15].

Purpose

At first blush, the asexuality and disability sexuality movements seem to be at odds with

each other—one trying to legitimatize what the other is trying to dispel. In this article,

however, we will argue that both movements are representative of the movements of

historically marginalized and medicalized groups towards greater acceptance and under-

standing. Accordingly, this article will begin with a review of theories and terminology

related to asexuality in the general population. The remainder of the article will discuss (1)

the history of asexuality as a forced assumption of people with disabilities; (2) intersec-

tionality as it relates to asexuality and disability; and (3) the similarities between the

asexuality and disability sexuality movements. Suggestions for future research are also

provided.

Defining Asexuality

Defining and Differentiating Sexual Desire, Arousal, and Behavior

One key necessity in discussing and defining asexuality is to define and differentiate sexual

desire from other similar but distinct concepts. Sexual desire is often assumed to be

synonymous, or at least immutably linked, with both sexual arousal and sexual behavior,

but research has revealed that the relationship between the three constructs is muddled at

best [7]. For example, research has found that women may have consensual sex for reasons

other than sexual desire itself [10]. These reasons include wanting to please a partner,

wanting to relieve tension, or wanting to get pregnant. In these situations, sexual behavior

may occur without explicit sexual desire or attraction. Likewise, sexual desire or arousal

can occur without sexual behavior [10]. For instance, a woman may desire to have sex but

not have a partner with whom to do so [10]; Nosek et al. [17] found that this may be a more

common issue among women with disabilities, who tended to report more difficulty finding

sexual and romantic partners than their counterparts without disabilities. Furthermore,

people may experience sexual desire but not sexual arousal due to a physical or health

condition [7, 10], and research has yet to establish a standard definition of what constitutes

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low, normal, or high sexual desire. This adds a great deal of personality subjectivity of the

diagnostic process and conceptualization of abnormal sexual desire.

Differentiating Sexual and Romantic Attraction

In addition to differentiating between sexual desire, arousal, and behavior, the asexual

community also differentiates between sexual and romantic attraction. To this end, many

self-identified asexual people may describe themselves using terms such as ‘‘heteroro-

mantic,’’ ‘‘homoromantic,’’ and ‘‘biromantic’’ to indicate that, while they have no desire to

pursue sexual relations with other people, they do have a desire to engage in intimate,

romantic relationships with other people of specific genders or sexes [8, 11]. A survey of

self-identified asexual people by AVEN [5] found that 82.5 % of respondents identified as

having an active romantic orientation. The remainder (17.5 %) identified as aromantic as

well as asexual, indicating that, although they may pursue close platonic relationships, they

had no desire to pursue either romantic or sexual relationships with other people.

Theories of Asexuality

Hyposexual Drive Disorder

Psychologists and psychiatrists have discussed asexuality in relation to hyposexual desire

disorder (HSDD) [1, 2], and there is still marked debate in the literature over whether or

not the two differ as well as the validity of both. In the Diagnostic and Statistical Manual of

Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) [1], HSDD is defined

simply as ‘‘persistently or recurrently deficient (or absent) sexual fantasies and desire for

sexual activity’’ that cause ‘‘marked distress or interpersonal difficulty’’ [1, p. 541]. Thus,

as with all DSM-IV-TR diagnoses, the given behavior or symptomology must cause

marked personal distress, life dysfunction, or both in order to be considered a diagnosable

disorder [1]. In the DSM 5 [2], the criteria for HSDD were changed to reflect a better

understanding of the multidimensionality of sexual desire, sexual arousal, and sexual

behavior [7]; as with all DSM 5 diagnoses, the distress and dysfunction criteria remained

[2].

The requirement of marked personal distress or interpersonal dysfunction has been a

point of contention between clinicians who diagnose HSDD and the asexual community.

Researchers have found that most self-identified asexual people do not report feeling

distress as a result of their lack of sexual desire or attraction [8, 20]. As a result, many

asexuality researchers have used the presence or absence of distress or dysfunction caused

by the lack of sexual desire to differentiate asexuality and HSDD [6, 8].

Physiological and Psychological Pathology as an Explanation for Asexuality

It is well noted that a wide variety of physical conditions may affect sexual desire,

including cancer, diabetes, cardiovascular disease, hormonal and endocrine problems,

among others [16]. Similarly, psychological factors such as stress and depression symp-

toms may affect sexual desire [16], and loss or decrease of sexual desire may be a symptom

of some psychological disorders, such as major depression, specific phobia, and traumatic

stress related to sexual assault [1, 2]. However, it is important to note that these conditions

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often result in changes in sexual desire rather than a continual absence of it and that such

changes are often distressing to the people experiencing them [1, 2, 16]. Conversely,

asexuality is defined as lifelong lack of sexual attraction or desire [4] that does not result in

psychological distress [6] and people who experience a sudden and distressing decrease in

sexual desire will not meet those criteria. Some psychological conditions, such as

schizotypal personality disorder or Asperger’s syndrome [1] may result in global social

isolation—including sexual isolation. However, such conditions must impair overall

functioning, not just sexual desire or activity. Thus, if these conditions could explain

asexuality, one would expect to see extremely high rates of these disorders among self-

identified asexual people.

Although research concerning self-identified asexual people is just emerging, a study of

187 self-identified asexual people recruited from the AVEN forums found that participants

did not have significantly elevated rates of depression, interpersonal difficulties, mental

health diagnoses, or physiological sexual dysfunction. About half of participants did report

elevated scores on the Social Withdrawal scale of a personality assessment; however, other

factors, such as the possibility that items on the scale may have tapped into romantic or

sexual relationships, recruitment methods, or social isolation due to marginalization may

have impacted these result. Although more research is needed in this area, Brotto et al. [8]

results support the theory that asexuality often exists in the absence of physiological or

psychological dysfunction.

The asexuality visibility and education movement does not deny that medical and

psychological conditions can affect sexual desire. In fact, AVEN [4] suggests that indi-

viduals experiencing a concerning decrease in sexual desire or issues with sexual arousal

first visit a physician to rule out any possible medical causes for these symptoms. However,

the asexuality visibility and education movement does posit that an innate lack of sexual

attraction or desire is not necessarily pathological [4]. Simply classifying asexuality as

HSDD is also problematic given the distress criterion present in the DSM and the fact that

many self-identified asexual people report no such distress surrounding their lack of sexual

desire. This lack of distress and the general lifelong nature of their lack of sexual desire

[20], have lead many people in the asexual community to reject the idea of asexuality as a

disorder or deficit but to instead regard it as an immutable but benign facet of their identity

[8], similar to how homosexuality, heterosexuality, and bisexuality are now commonly

conceptualized [11].

Assumed Asexuality and the Disability Sexuality Movement

The Myth of Asexuality and Disability

Historically, people with disabilities have been denied a sexual identity within Western

society [22]. In the extreme, they have been forcibly sterilized or denied the right to marry

[12]; more subtle prejudice dictates that people with disabilities are de facto not sexually

attractive or incapable of having sex or pleasing a partner [15, 22]. Milligan and Neufeldt

[15] refer to this as the ‘‘myth of asexuality.’’

Milligan and Neufeldt [15] conceptualize the myth of asexuality and disability as

having two primary faces. First, some may assume that because people with disabilities,

especially those with physical disabilities, have limited opportunities for sexual gratifi-

cation, their actual desire for sexual activity is also greatly decreased or non-existent. This

type of ‘‘asexuality myth’’ may be particularly common with regards to people with spinal

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cord injury, as the injury itself can interfere with physical sexual functioning [22]. The

second type of presumed asexuality is based around cognitive capacity and functioning,

rather than physical functioning, and thus is often applied to individuals with cognitive,

intellectual, and psychiatric disabilities. This theory holds that individuals with these

disabilities lack the ability to understand and consent to sexual activity and therefore

should not learn about or engage in it even as legal adults [15]. Although these individuals

may be granted the physical ability to engage in sexual behavior by society, the myth of

asexuality nevertheless dictates that they should never seek to do so and that any desire to

engage in even consensual sexual activity is deviant.

Because of these historical—and still persistent—attitudes towards the sexuality of

people with disabilities, modern advocates, activists, and scholars in the disability com-

munity have worked to disprove and dispel such attitudes. For example, Nosek et al. [17]

conducted a survey of 946 women with physical disabilities and an equal-size comparison

sample of women without disabilities. They reported that even though respondents with

disabilities tended to report less sexual activity and opportunity, both groups reported

similar levels of sexual desire. Thus, the researchers conclude that the difference between

the two groups can be largely accounted for by the difficulties that many women with

physical disabilities face when finding a sexual/romantic partner. Highlighting this point,

the report quotes a woman with a severe physical disability saying, ‘‘I’m sure I could

function just fine sexually, if I could only find a man!’’ [17].

Assumptions of the Disability Sexuality Movement and Implications for Asexuality

Perhaps the chief assumption of the disability sexuality movement is that the myth of

asexuality and disability is just that—a myth. Thus, people with disabilities are assumed

to have inherent and in-born sexuality and the right to express this sexuality consen-

sually. By and large, this assumption is correct—like people without disabilities, people

with disabilities almost always have a desire for sexual intimacy and activity [17].

However, an absolutist interpretation of this idea has troubling implications for self-

identified asexual people. First of all, the assumption that people always experience

sexual desire and attraction in effect erases the ability of people to identify as asexual.

Second, total ignorance or dismissal of asexuality as a legitimate sexual orientation could

cast people with disabilities who identify as asexual as opponents of the disability

sexuality movement, instead of another marginalized group working for recognition and

legitimacy.

The Intersection Asexuality and Disability

Intersectionality and Disability

On a basic level, asexuality may appear to contradict the very goals of the disability rights

movement as this movement pertains to sexuality. However, if one considers asexuality to

be a legitimate sexual orientation then it stands to reason that at least some people with

disabilities are also asexual. This is especially true given that preliminary research has

suggested the rates of asexuality may be higher in individuals with Asperger’s than in able-

bodied matched controls [8]. However, a vast majority of individuals with Asperger’s

report experiencing dyadic sexual desire [9]. That is to say, the existence of asexuality in

people with disabilities does not prove the broader myth of asexuality and disability. As in

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the general population, the vast majority of people with disabilities are heterosexual, but,

as would be expected, there are also considerable numbers of people with disabilities who

are homosexual or bisexual [9, 17, 18]. Therefore, it stands to reason that there are also

people with disabilities who are asexual and that the two things need not necessarily be

linked by a joint cause.

Research has consistently shown that disability status interacts with other personal

characteristics or minority statuses to influence a person’s experiences. For example,

studies of interpersonal violence and help-seeking in people with disabilities who are also

members of other marginalized groups may face compounding barriers to addressing abuse

as a result of how their multiple identities interacted. In a study of racially, ethnically, and

culturally diverse people with disabilities, Lightfoot and Williams [14] found that Deaf and

hard of hearing individuals who used a non-standard dialect of American Sign Language

faced the dual barrier of finding shelters or service providers who both provided inter-

preting services and were knowledgeable about their culture. Indeed, participants in

Lightfoot and William’s [14] study frequently reported feeling pressure to choose between

their cultural and disability-related needs when seeking help. Thus, the intersectionality of

their disability and cultural identity was affecting their lives in very real ways and yet was

often ignored or dismissed.

Disability and Sexual Minority Status

Concerning the intersection of disability and sexual minority status specifically, O’Toole

[18], a lesbian with a disability, has written about the challenges that lesbians with

disability face in confronting both ableism from the larger lesbian community and

homophobia from the larger disability community. She also writes about how both the

primary assumption of asexuality and the secondary assumption of heterosexuality in

people with disabilities disability create additional identity issues for lesbian and bisexual

women with disabilities. Similar to the themes noted in Lightfoot and Williams’ [14]

study, O’Toole and Brown [19] also discuss the pressures lesbians with disabilities

sometimes feel to choose between their co-occurring identities of lesbianism, woman-

hood, and disability status and the challenges that lesbian and bisexual women with

disabilities can face when searching for medical providers who understand both disability

and sexual minority issues.

Asexuality in Disability Narratives

Kim [13] writes of difficulty of integrating asexuality into disability narratives. She

discusses the historical tension between the two and the lack of discussion of

‘‘embodied’’ asexuality in disability narratives. It is suggested that the history of

imposed asexuality in the disability community can create barriers to discussing

asexuality in disability narratives, for fear of imposing old stereotypes on the authors.

Thus, although Kim cites a narrative by a woman with physical disability that discusses

the woman’s non-distressing disinterest in sexual behavior, she is careful not to label

the author or the narrative as explicitly asexual. It is likely that people with disabilities

may feel the same way about disclosing or discussing the possibility of asexuality as an

orientation; because the term has such negative connotations in the disability com-

munity, it risks being left out of the broader conversation on disability and sexuality

altogether.

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Similarities Between the Asexuality and Disability Sexuality Movements:

A Movement Away from Medical Models

Whereas asexuality may be regarded with suspicion or disbelief in general society, the

assumption of asexuality has been forced, usually inaccurately, on many people with

disabilities. In other words, ‘‘people’’ are assumed to be sexual while ‘‘people with dis-

abilities’’ are assumed to be asexual [13]. In this way, people with disabilities are

‘‘othered’’—a sexuality that would be viewed skeptically in an able-bodied or ‘‘normal’’

person is assumed as a default or likelihood among people with disabilities. This may

imply that people with disabilities exist separate from the typical conceptualizations of

humanity and human normalcy. Because such beliefs can be seen as dehumanizing, there

has been a concentrated pushback against these attitudes from within the disability com-

munity and the disability rights movement.

Disability

The medical model of disability holds that disability is a medical issue that must be cured

or treated. This ideology places people at an inherently suboptimal level [22], as it can be

used to promulgate the idea that that only by ridding themselves of the disability can the

person again achieve ‘‘whole’’ personhood. The assumption of asexuality in disability can

be seen as a result of this medical model of disability. First, the onset of a disability is

sometimes assumed to be a cessation of their sexual identity. For example, people with

spinal cord injuries were often incorrectly assumed to have lost all sexual function, ability,

and desire at the onset of their injuries [15, 22] and thus the assumption of sexuality pre-

injury became an assumption of asexuality post-injury.

Additionally, the acquisition of a disability often causes individuals to be seen as less

desirable as a sexual and romantic partner [17, 22], leading to portrayals of the spouses and

partners of disabilities as noble and self-sacrificing ‘‘saints’’ who have given up the chance

at a ‘‘normal,’’ loving, and sexually fulfilling relationship in order to care for their partner

with a disability [15]. Such attitudes paint people with disabilities as people who are

incapable of actively participating in mutually fulfilling relationships and thus are de facto

asexual.

In an effort to distance itself from these views, the disability sexuality movement has

broken sharply away from the medical model and towards the sociopolitical model of

disability [22]. Under the sociopolitical model, the sexuality of people with disabilities is

seen not as a matter of medical absence or threat but rather as one of sociopolitical

oppression and suppression [22] at worst and ignorance at best [15].

Asexuality

Although the social history of self-identified asexual people is much shorter and quieter

than that of people with disabilities and the disability sexuality movement, it nevertheless

remains heavily influenced by the medical model [21]. As discussed above, until quite

recently, the idea of asexuality in humans was considered solely as a medical or psy-

chological problem in need of a cure. Even as society becomes more accepting of non-

heterosexual sexual orientations, the underlying assumption that everyone must be sexually

attracted to someone remains. Asexuality is perhaps first assumed to be a sign of a

physiological or hormonal issue [6]. If a physiological cause for asexuality is ruled out,

assumptions are made regarding possible psychological causes. In fact, the assumptions

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that asexuality must be linked to some sort of psychological issue has led some self-

identified asexual people to feel the need to hide or downplay psychological distress, even

if the distress is unrelated to their asexuality [8]. Fear that their sexual identity could be

stigmatized may lead some self-identified asexual people to avoid seeking treatment for

psychological problems or to lie about or misrepresent their sexual orientation in order to

avoid stigma or the assumption that their asexuality can or should be ‘‘fixed.’’

As with the disability rights movement, the asexuality education and visibility move-

ment has generally moved away from the medical model of asexuality into a sociopolitical

model in which asexuality is viewed as a legitimate and healthy but marginalized sexual

orientation. Although many asexual people are curious about the cause of asexuality [20]

and believe it to be biologically based in the same manner as other sexual orientations [8],

they generally do not feel the need or desire for asexuality to be cured. Instead, asexual

people often wish to be acknowledged as a legitimate sexual minority that is in need of

acceptance and visibility [3, 4].

Conclusion and Future Directions

The Integration of Asexuality into the Disability Sexuality Movement

When examining asexuality in the context of disability, it is important to note that the

asexuality education and visibility movement is not suggesting that asexuality is the default

sexuality for any group of people. Rather, they are simply advocating that it be recognized

as a valid and non-pathological variant of human sexuality and that asexuality should be

included in the broader social conversation and conceptualization of human sexuality.

Recognizing this view would allow asexuality to be more easily integrated into conver-

sations on sexuality and disability. Rather than being the expected or assumed sexuality of

people with disabilities, asexuality could be discussed as one of several possible sexual

orientations of people with—and without—disabilities.

A Non-pathologizing Model for Researching Asexuality and Disability

Within the area of asexuality and disability, there are many research questions that should

be explored. For example, what is the prevalence of asexuality among people with dis-

abilities? Is this prevalence higher or lower than in samples using similar methodology in

the general population? Is the prevalence of asexuality higher or lower in certain disability

categories than others? For asexual people with disabilities, how do the co-occurring

experiences of asexuality and disability influence each other?

Although the empirical and scholarly literature on asexuality is growing, it remains a

relatively nascent area of research. Perhaps as a result, little work has looked at the

intersection of asexuality and disability through a dual affirming lens. This dual affirming

view of asexuality and disability would examine both phenomena not as deficits in need of

cure but as both marginalized or minority social statuses and legitimate personal charac-

teristics and identities. Such a framework would avoid pitting the two groups against each

other, either by framing disability as an assumed cause of asexuality (pathologizing

asexuality) or by framing asexual people with disabilities as undesirable or deviant indi-

viduals who detract from the normalcy of the asexual community (pathologizing disabil-

ity). Rather, scholars might do well to take a neutral stance on any connection between

disability status and asexual orientation, working with the null hypothesis that the two

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characteristics are distinct things that can nevertheless co-occur. Although it is possible

that this null hypothesis could be revised in the face of substantial empirical evidence to

the contrary (e.g., much higher rates of certain disabilities among asexual people or vice

versa), one must still keep in mind that many or most self-identified asexual people are not

disabled and most people with disabilities are not asexual. Even the connection of certain

conditions to asexuality does not mean that asexuality and disability are linked for all

disabling conditions or for all individuals with those conditions. This assumed neutrality

would allow researchers to explore the intersection of asexuality and disability as a social

phenomenon rather than a search for etiology.

Acknowledgments The authors would like to thank Julie F. Smart, PhD, for her assistance with earlier drafts of this manuscript.

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