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Quadriplegic Sexuality: Demystifying Misconceptions

Gerald Christian, Joey Gray, Kelsie Roberts, and Jackie Eller

ABSTRACT

A common misconception about people with quadriplegia is that

they cannot or do not have sex. Most research on sex and disability

focuses on anatomy and physiology. Research regarding sex as leis-

ure and sexual practices of people with quadriplegia is limited.

Interviews explored people with quadriplegia perceptions of how

people without disabilities view their sexuality, if sex enhances their

overall quality of life, and if they view sex as leisure. Findings indi-

cate people with quadriplegia are sexual beings who enjoy “giving”

during sex, perceive that people without disabilities view them as

nonsexual, and the majority of the participants viewed sex as leisure,

contributing to their quality of life.

Introduction

Academia no longer ignores sex and disability, but research focusing on the perceptions

of people with quadriplegia (PWQ) regarding their sexuality extending beyond repro-

duction is needed. Burr (2011) maintains, “sexuality of people with disabilities continues

to be overlooked, avoided or even dismissed as a component of holistic care because of

a longstanding stigma that shrouds disability and sex” (p. 259). Despite expanding

acceptance, recent research reveals that disability and sexuality remain understudied and

uncomfortable to discuss. Santos’s and Santos’s (2018) study consisted of interviews

with 30 women with a disability to explore ways to combat ableism and sexism through

narratives concerning disability and the sexual experiences of women. Women with a

disability shared how they avoided discussing their sexuality. They even avoided the

topic with a close family member or medical professional. Santos and Santos revealed

that one doctor refused to answer questions about sex, suggesting they ask another

woman with a disability. There is still much to be done for this stigma around disability

and sexuality to be resolved. Descriptions of sex as leisure for people with disabilities

(PWD) may enlighten people, combating stigma.

The purpose of this study is to explore PWQ perceptions of their sexual experiences

post-injury. We aim to provide an in-depth view of the sexual perceptions of PWQ

exploring the following research questions: 1) What are PWQ perceptions of their

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sexuality? 2) How do PWQ feel others perceive their sexuality? 3) Does having sex

enhance the overall quality of life for PWQ? and 4) What are PWQ perceptions of sex

as leisure?

Literature review

Disability and sexuality research reside mostly in the medical field, but sexuality is too

complex to simplify within an understanding of only sexual organs (Torriani, Britto, da

Silva, de Oliveira, & de Figueiredo Carvalho, 2014). Despite this, most research focuses

on reproduction, while others focus on rehabilitation after obtaining a disability such as

a spinal cord injury (SCI). Anderson, Borisoff, Johnson, Stiens, and Elliott (2007a) pre-

sented their research on SCI in three articles. Though medically driven, the articles

address psychosocial topics such as sexual sense of self and the relationship between sex

and quality of life (QOL) breaking from the norm of predominantly focusing on anat-

omy. When Anderson et al. (2007a) surveyed 286 SCI participants regarding the pri-

mary reason for pursuing sexual activity, they discovered fertility was the least common

reason. Only 1% of participants engaged in sex for reproduction. However, the majority

of PWD sex research revolves around reproduction. As Anderson et al., emphasize “past

attitudes that people with SCI should be ‘happy to be alive’ and should ‘learn to live

without sexual pleasure’ are outdated” (p. 329).

Disability is a broad term, but it is essential to focus on specific impairments, as sug-

gested by Shuttleworth, Wedgwood, and Wilson (2012) instead of grouping all people

who are disabled together. Grouping all PWD can be useful for parking, but issues as

complex as sexuality require more attention and detail. Comparing persons with SCI to

persons with other disabilities is of limited value as they are often significantly different

in terms of feeling and functions. A person with quadriplegia is an individual affected

by paralysis in all four limbs, as compared to people with paraplegia who are affected in

the lower extremities only. Even the differences between quadriplegic (cervical SCI) and

paraplegic (thoracic, lumbar, or sacral region SCI) and their daily living skills are vast.

Differences in the damaged area of the spinal cord can have an extremely different

effect on function.] Both PWP and PWQ predominantly use wheelchairs for mobility

purposes. Many PWP live independently or are mostly independent in their daily living

needs. Although some PWQ reach total independence, others depend on assistance for

some of or all their daily living needs. These physical differences affect psychosocial fac-

tors, as well. People with quadriplegia are experiencing the physical world, and arguably

the more challenging social world from a different angle than people with paraplegia

(Torriani et al., 2014) in general and specifically when pursuing sexual activity as com-

pared to PWP. Given these discrepancies, our study focuses on PWQ perceptions

of sex.

Men with SCIs face emasculation regarding their sexuality and are deemed sexually

passive by people without disabilities (Lindemann, 2010). Dahlberg, Alaranta,

Kautiainen, and Kotila (2007) examined men with SCI regarding sexual activity and sat-

isfaction using a cross-sectional design with a structured questionnaire and optional fol-

low-up appointment. During the follow-up appointment, a physician examined

participants to determine the feeling and function level, and a therapist interviewed

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sexual satisfaction. The authors found that once a person sustains a SCI, their “sexuality

is complicated by marked physiological, psychological and emotional consequences”

(p. 152). They conclude men with a more severe locomotory quadriplegia, may have

more difficult sex lives compared with men with paraplegia. The “severe locomotory”

referring to the impairment of lower and upper extremities does not prevent sex;

instead, it is an obstacle for PWQ to manage. More impairment does not necessarily

mean less sex or satisfaction though it may mean more adaptive measures are necessary.

Dahlberg et al., suggest sexual satisfaction can increase for PWQ by educating and col-

laborating with sexual partners.

One component considered as part of successfully readjusting post-injury is a per-

son’s sexuality. The relative worth sexuality plays in QOL is determined by individual

factors such as how vital sexuality was to the person pre-injury. Torriani et al. (2014)

examined 14 participants’ sexual activity before SCI, sexual activity after SCI, difficulties

with sexual activity after SCI, and adjustments made in sexual activity after SCI.

Sexually invisible social experiences can lead some PWQ to feel they are viewed as

being asexual. Whether PWQ are seen as asexual due to reproductive irrelevance or

societal gender expectations, the result can limit sex as leisure for PWQ. In their study

on sexuality and PWD, Rohleder, Braathen, Hunt, Carew, and Swartz (2018) found zero

participants identified as asexual. However, a possible reason PWD are perceived as

asexual or undesirable is the accepted mainstream standards of what constitutes beauty

(Torriani et al., 2014), potentially impacting individual body self-awareness.

Women with a disability live more as a minority than men and are underrepresented

in disability and sexuality research. Despite this, about 22% of people living in the

United States with SCI are women (National Spinal Cord Injury Statistical Center,

2018). Post-SCI women may have a more difficult time becoming involved in sexual

relationships, mainly due to psychological and social factors (Anderson, Borisoff,

Johnson, Stiens, & Elliott, 2007b). This absence warrants investigation as physical factors

often does not make it more difficult for females with quadriplegia to have sex. Rather,

social and psychological differences stemming from societal and gender expectations

make it harder for females with quadriplegia to have sex. The world must do a better

job of recognizing sexuality, particularly concerning sex as leisure is within everyone,

regardless of ability or disability (Torriani et al., 2014).

Women face stereotypes and discrimination in multiple aspects of their lives, as do

PWD. When disability and gender intersect, stereotypes multiply. The literature has

highlighted stereotypes encountered by women with disabilities. These stereotypes

demeanor take control and choice away from women with disabilities. Hyler (1985)

wrongly implied that PWD need helpers, not lovers. He further maintained that if a

person is not entirely self-sufficient, then they cannot handle a sexual relationship.

Hyler’s findings have been widely refuted. Even now, female PWDs face stereotypes,

including avoiding romantic relationships if they do not have full bodily sensation,

highlighting shortcomings of sex education, and the lingering notion that sex equates to

penetration. Santos and Santos (2018) concluded that the shortage of disability-specific

information on sex could result in absolute ignorance, particularly regarding women

and sexual orientation. Women who identify as LGBTQ face additional discrimination

of homophobia by people without disabilities. According to O’Toole (2000), those who

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are open about being lesbians not only face accessibility barriers but also experience

homophobia, even from within the PWD community. When gender, ability, and sexual

orientation intersect, discrimination magnifies (O’Toole, 2000).

Historically, quadriplegia and sex research focused on reproduction ability, ignoring

sex as leisure. Corbett, Klein, and Bregante (1987) focused on the marginalized sexuality

of women with disabilities, and the need for better sex education, something which has

traditionally been geared more toward men. Despite this call in 1987, little has been

done to address these issues for women with a disability. To overcome PWD’s sexual

invisibility, Corbett et al. stressed that no matter the disability, someone with the same

disability is living their life to the fullest, including sexual activities. Some PWDs are

thinking about sex, some are enjoying sex, and some are even confident in their sexual

abilities. Essentially, sexual thoughts and activities are much the same for PWD as they

are for people without disabilities. Corbett et al. posit that everyone is a human being

first, without regard to disability status, and every human experiences leisure. The pleas-

urable qualities of sex are inherently related to leisure. Thus, sex as leisure for PWD

needs further exploration to improve our understanding and appreciation of PWD as

sexual beings.

Leisure, disability, and sex

Despite the call by Aitchison (2009) for more research exploring leisure and disability,

not unlike sex and leisure, the topic remains understudied. Leisure is often defined by

what it is not as opposed to what it is. Aitchison’s study found conventional definitions

typically do not adequately explain leisure for persons with a disability, clarifying that

their leisure was less defined by time, activity, or space and more defined “by who they

encountered and interacted with as part of their leisure” (p. 383). Due to mobility limi-

tations, leisure is often about interactions and experiences with other people for PWQ,

but physical activity can also be enjoyable. In seeking an inclusive definition of leisure,

scholars today conceptualize leisure “as time, activity and state of mind that is differen-

tiated from ‘work’ in that it entails an activity that is relatively freely undertaken pri-

marily for purposes of pleasure that is internally rewarding to the individual” (Carr &

Poria, 2010, p. 4). Like most people without disabilities (PWOD), people with quadri-

plegia experience and enjoy leisure, which includes mental and physical leisure experi-

ences. Notably, sex often incorporates both physical and mental pleasure. Berdychevsky

and Nimrod (2017) describe sex as “a self-contained activity with intrinsic sensual,

diverting, and/or relational meanings” (p. 224).

Sex as leisure

When leisure and sex are defined, it becomes evident that sex, when consensually pur-

sued for pleasure, embraces definitions of leisure (Godbey, 2008; Meaney & Rye, 2007).

Sex can be considered serious leisure, comprised of substantial interest, and fulfillment.

Alternatively, it may be deemed as casual leisure, a hedonistic experience engaged in for

pure joy or pleasure (Stebbins, 2007). According to Csikszentmihalyi (1990) through

sex, we can enter flow “a state of concentration so focused that it amounts to absolute

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absorption in an activity ….an exhilarating feeling of transcendence” (p. 1). Given the

vast attributes of leisure, scholars present solid reasoning to view sex as leisure.

There has been a peak in interest regarding the various intersections of sex and leis-

ure (Berdychevsky, 2018; Berdychevsky & Nimrod, 2017; Berdychevsky, Nimrod,

Kleiber, & Gibson, 2013; Parry & Light, 2014), yet research surrounding the nexus of

sex, leisure, and disability, is still lacking. A possible reason may be related to society’s

heteronormative hegemonic ideas of sex (Rembis, 2010), leading to perceptions of PWD

as asexual (Esmail, Darry, Walter, & Knupp, 2010), or as persons unable to have sex for

enjoyment and pleasure (Tepper, 2000) (i.e., sex as leisure). Despite this fact, the litera-

ture surrounding sexuality and disability has continued to focus primarily on the med-

ical and physical components (Sakellariou, 2006), lacking a thorough examination

through a social and cultural lens (Tepper, 2000). Exploring sex as leisure for PWQ will

add a much-needed socio-cultural perspective to sex research, furthering our under-

standing of the perceptions and sexualities of PWQ.

Sex, leisure, and quality of life

Quality of Life (QOL) is a common yet complex concept composed of personal, social,

and cultural dimensions. Defining QOL and determining which factors comprise it is

challenging due to different individual, social, and cultural values (Iwasaki, 2007).

According to Brajša-Zganec, Merkaš, and Šverko (2011), QOL measures a person’s

objective circumstances and subjective well-being, such as one’s general life satisfaction.

Despite the personal and socio-cultural complexities when measuring QOL, the primary

factors involved are happiness and life satisfaction (Iwasaki, 2007). Sinha and Van Den

Heuvel (2011) concur QOL is multidimensional, primarily concerned with happiness

and best determined by the individual.

Iwasaki (2007) conducted an extensive literature review on leisure and QOL, identify-

ing how “existing QOL literature highlights the role of leisure as a contributor to QOL

in many countries” (p. 235). A cross-sectional and longitudinal analysis by Wendel-Vos,

Schuit, Tijhuis, and Kromhout (2004) found a link between physical leisure activity and

health-related QOL. The link between leisure and QOL is not present in physical activ-

ity leisure alone. Brajša-Zganec et al. (2011) found that intimate leisure activities con-

tribute to subjective well-being, a significant component in QOL. The study of leisure

and QOL for PWD has yielded findings noting the significance of leisure on QOL. A

QOL model for psychosocially adapting to chronic illness and disability acknowledges

that leisure is one of the 10 domains of QOL (Bishop, 2005). Nosek et al. (2004) exam-

ined the meaning of health for women with physical disabilities. The study revealed

how participating in leisure activities increased life satisfaction, self-esteem, and self-ful-

fillment for women with physical disabilities. An exploration of serious leisure and QOL

for PWD conducted by Patterson (2001) found that serious leisure activity increases

self-esteem and self-respect for PWD. Patterson’s work discusses how this boost to self-

esteem and self-respect makes one more likely to be accepted by the community, further

increasing QOL for PWD participating in serious leisure. The significant impact of vari-

ous forms of leisure have on QOL is evident in the current literature. However, litera-

ture examining sex, leisure, QOL, and PWD, specifically on PWQ, is limited.

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73

Sinha and Van Den Heuvel (2011) examined QOL and amputees. They discovered

that QOL for amputees is affected by body function and structure, which affects activity

participation. Reitz, Tobe, Knapp, and Schurch (2004) explored participants’ sexual

activities, abilities, desires, satisfaction, and overall sexual adjustment post-SCI. The

study found that participants’ relationship with their partner and the ability to move

had the most impact regarding satisfying sex life, but no significant correlation between

sex and QOL. The authors admit this finding is confusing and suggest bias in the

studied population may be the cause. They also speculated that variance in SCI levels

might be a possible factor behind the findings. Pre-SCI sexual abilities remaining post-

SCI “are not necessarily correlated with better satisfaction in sexual life” (Reitz, et al.,

p. 173). This finding suggests there is more to sexual satisfaction post-SCI than mere

genital function. Reitz et al. conclude that subjective influences play a more significant

role in sexuality post-SCI and emphasize sexual health and QOL for those with SCI

warrants further study. Hence, the present investigation utilizes a qualitative method-

ology to unravel the unique sexual experiences and perceptions of PWQ.

Methodology

We sought to understand the sexuality and sexual experiences of PWQ through narra-

tives. This approach provides the opportunity to understand participants’ worldviews

from the co-constructed realities, allowing researchers to recognize the shared experien-

ces of quadriplegia and sexuality (Creswell & Poth, 2017). Notably, the primary investi-

gator also has quadriplegia. Genoe and Liechty (2016) maintain this can assist with

insight into the phenomenon, and improve access and rapport with participants.

Ensuring the diverse experiences of all participants were represented, the study utilized

reflexive journaling to record personal perceptions and experiences (Dupuis, 1999;

Genoe & Liechty, 2016). Much of the vernacular and examples presented in this manu-

script are representative of the quadriplegic everyday reality. Semi-structured interviews

were guided by the following research questions, seeking participant perceptions of 1)

their own sexuality, 2) how people define sexuality without disabilities, 3) how sexual

experiences impact participant QOL and 4) quadriplegic sex as leisure.

Data collection

Careful and thorough informed consent was gathered before conducting the semi-struc-

tured interviews. Most interviews took place in person, with the participant choosing a

safe and private location, and lasted between 36 and 65minutes. Due to scheduling and

transportation issues, two participants were interviewed via Skype or FaceTime. Due to

the sensitive nature of discussing one’s sexuality, a relaxed conversation style atmos-

phere was used during interviews. Scripted open-ended interview questions were utilized

to gain participants’ narratives in their own words, providing insight about their per-

sonal sexual experiences. The interview questions about participant’s sexuality focused

on past and present sexual experiences as a PWD and included personal circumstances

regarding unique characteristics of each participant’s SCI.

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In an effort not to influence perceptions of sex as leisure, the researchers purposefully

did not define sex before the start of the interviews. Participants were able to speak

about their past and current sexual experiences, preferences, and activities without

restriction. Multiple coders, member checking, and journalistic field notes were used to

ensure methodological vigor. Participant narratives were the sole focus, allowing the

data to flow from the participantse opinions and experiences in the direction of their

choice. Interviews were conducted fall 2018 and audio recorded to enhance the accuracy

during data analysis. Table 1 presents participant demographics.

Data analysis

Analysis began by reading transcripts and referring to journalistic field notes to uncover

the topics consistently shared by participants. The narratives were coded as suggested

by Creswell and Poth (2017) and analyzed via categorical content analysis. The research-

ers identified patterns that appeared in multiple interviews, with the most relevant and

insightful themes discussed in this manuscript. Analysis of participant narratives pro-

vided an understanding of their lived sexual experiences and perceptions, expanding

our understanding of quadriplegic sex beyond just physicality. The most prevalent

themes are: People with quadriplegia are givers, people with quadriplegia are sexual

beings, perceptions of people without disabilities are not reality, and people with quadri-

plegia view sex as leisure.

Participants

Recruitment of participants took place among a large and diverse disability community

in the middle Tennessee area utilizing an open invitation by word of mouth and snow-

ball sampling, encouraging PWQ between the ages of 21-60 to participate. Ten partici-

pants who had quadriplegia, seven men and 3 women, represented a fair proportion of

various levels of quadriplegia, with nine having an incomplete SCI. Participants were

assigned pseudonyms to ensure confidentiality. See Table 2 for participant

demographics.

Table 1. Semi-structured interview guide.

Question #

Question

1.

Please share with me your (age, sex, gender, sexual orientation, relationship status)

2.

Tell me about your disability (Level, complete/incomplete, function/sensation, How long since your injury)

3.

Tell me about your dating/relationship/married history as a person with a disability?

4.

How important is it for you to be sexually active? (if not active, do you want to be?)

5.

As a quadriplegic, how do you think non-disabled people perceive your sexuality?

6.

How do you view your own sexuality?

7.

How often do you have sex?

8.

When you have sex what type of sex do you engage in (hand stuff/toys/oral/anal/vaginal, etc.)?

9.

Tell me about your favorite sex position?

10.

What modifications if any have you used during sex?

11.

How do you relate sex to your sense of well-being and quality of life?

12.

How would you define leisure? Do you consider sex leisure?

13.

Is there anything else you would like to say or share with the world about disability and sexuality?

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Findings

People with quadriplegia are givers

Nine out of 10 participants described oral sex as their preferred method for delivering

pleasure. Jess states, “Oral for me is the go-to because my face still works perfectly fine.”

Jess went on to share what she enjoys about giving oral sex, “If I give oral, I’m automat-

ically in the mood, that’s what does it for me.” Claudette said her favorite sexual pos-

ition is to be “just giving” sexual pleasure and explains the various ways she is a giver.

“I like to be the giver, not the receiver. So, I use my mouth, my hands, and any kind of

toy.” The words “give” or “giver” are prevalent throughout participant narratives.

The two subjects who are married and self-identified givers described the rationale

behind their pleasure-giving preferences. While discussing oral sex and giving pleasure,

Willy passionately states, “The actual act itself, just making sure that she is satisfied, is

how I get my satisfaction, watching her pleasure. I take pleasure in that.” Stormy

explains, “In my mind, I’m glad that my partner is happy. I’m like, ok …this is really

for you for the most part. I’m getting psychological satisfaction; she’s getting the sexual

satisfaction, so you tell me what you want.” When asked how important being sexually

active is post-injury, Stormy discloses, “Sex, right now, is about a seven or eight out of

10. It’s more because of what I want to do for the significant other than it is for me.”

Aero reveals: “I like kissing around on a girl, everywhere… the whole body. Oral as

well …this whole fifteen minutes and moving on to something else, I don’t like that. I

like hanging out for a little while.”

Aldous: I really get off on giving pleasure and making the sex as awesome as possible. So,

for me, sex, oral, or vaginal, I’m mentally aroused and just like in the moment. I have

sensation in my penis so I can feel it as well, to a point… so it’s just wonderful, and it’s

not about if I finish.

Aero, Aldous, and Chad discussed marathon sex, sex lasting for hours, focusing on

pleasure for their partner. During the interview, Chad referred to his sexual activities as

“sessions.” Aldous and Chad explain they want to make the sex the “best” sexual experi-

ence for their partner. Chad demonstrates a strong sense of community for his quadri-

plegic “brothers and sisters.” Chad exclaimed, “I feel like I’m having sex with her for all

the quads out there. I have to represent for us, and I go way out of my way to try to

overcompensate or blow their mind. I’m just trying to give us a good name!”

Table 2. Participant demographics.

Pseudonym Injury Age Gender

Sexual

orientation

Relationship

status

Yrs.

quad

Quad s

ex active

Orgasm

ability/type

Maintain erection

during sex

Aero

C5

54 Male

Heterosexual Single

25

Yes

Ejaculation

w/ ED injected meds

Aldous

C5-6

32 Male

Heterosexual Relationship

15

Yes

Ejaculation

w/o medication

Carlos

C-4

32 Male

Heterosexual Engaged

14

Yes

Ejaculation

w/o medication

Chad

C5-6

36 Male

Heterosexual Single

19

Yes

Ejaculation

w/o medication

Willy

C5-6

41 Male

Heterosexual Married

23

Yes

Ejaculation

w/ oral ED meds

Richard

C6-7

39 Male

Heterosexual Single

15

Yes

Ejaculation

w/ ED injected meds

Stormy

C5-6

47 Male

Heterosexual Married

30

Yes

Mental

w/ oral ED meds

Jess

C4-5

26 Female Gay

Single

7

Yes

Clitoral

N/A

Claudette

C7

26 Female Gay

Single

6

Yes

Mental

N/A

Sherry

C5-6

32 Female Heterosexual Single

12

Notattempted N/A

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People with quadriplegia are sexual beings

Eight participants shared how they are very sexual people, and sex is vital in their

overall QOL. Chad explains, “Sexuality isn’t depending on abilities or capabilities. I

think everyone should be entitled to sex, consensually obviously, and everyone should

experience it. It’s a beautiful thing; it’s healthy.” Jess stated she is a very sexual person

who enjoys sex, just as she did pre-injury. She says, “I like boobs, touching butts, and

porn. I just am a sexual person. I’ve always been that way. I remember masturbating

when I was a kid. It’s just always been there. There’s no denying it and no suppressing

it.” Willy expressed, “I still have the same testosterone and hormones running through

my body. Sex itself is an important part of my life.” He describes discovering how sex

as a PWQ and how his body is different from his pre-injury body:

I was going to have to start changing it to get the mental satisfaction. I’ve heard it called a

mental orgasm, in the disability community. That’s really what I discovered I had. Once I

discovered that and accepted it, my sex life became satisfying and fulfilling.

Chad compares sex with his quadriplegic body to pre-injury. Chad explains, “I don’t

orgasm every time or even the majority of the time, but I still love it … that feeling

right before you orgasm, that’s basically the feeling that I feel the entire time.”

During the early stages of being a quadriplegic, Stormy said sex was important

because “[Sex] made you feel like you were more than a person in a wheelchair. You

could be as close as you could be to someone that was an able-body.” Participants

stressed that sex was essential and a top priority shortly after sustaining a SCI. Stormy

explained, “The very first question I asked the doctor when I injured myself had noth-

ing to do with, will I walk? It was, will I ever be able to have sex? That was my very

first concern.” Immediately following his injury, Richard wondered, “would I ever be

able to have sex again. That was one of my big things. I was 22, … sex was always on

your mind. It’s still on my mind today.” Eager to persevere with their sexual identity,

several participants engaged in sexual activity soon after their SCI. Willy engaged in

his first sexual experience about six weeks after his accident, and Jess was also eager

to “try out” sex post-injury. “As soon as I got home was calling up somebody, ‘hey,

come try this out.’ Because I can’t do it myself!” Jess exclaims. Aldous proudly shared

that he had sex while still in the hospital post-SCI. Both Aero and Aldous revealed

what it meant to know a cervical SCI would not stop them from remaining sexu-

ally active.

Aero: I’m lying there, doctors told my wife, ‘you’re going to have to feed him, clothe him,

basically take care of his every need the rest of his life.’ That was freaking painful. I was

freaking out. Then a couple of nurses were in, and they were changing me or giving me a

bath. I got wood, and I could tell, like hey, what’s going on down there? It was definitely a

good day. I thought life wouldn’t be over then.

Aldous: In the hospital, my girlfriend noticed when I first got a boner and pointed it

out … very happy moment, she smiled then I was smiling, it was awesome to know. I just

couldn’t control it. I get what they call reflex erections, which means instead of like

mentally being turned on and then getting a boner, I get a boner anytime somebody

touches my penis. I had to figure stuff out, though. The first time I had sex was actually in

the rehab hospital with my girlfriend weeks after my accident.

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Merely discovering a traumatic SCI is not the end of one’s sexuality that contributes

to the will to adapt and live a fulfilling life. Participants shared how being sexual affects

their QOL, particularly describing attributes relating to leisure. Richard said that when

he has sex, he “feels better all around.” Carlos is happier with his sexual activity and

well-being intertwined. Others explained how feeling an emotional connection with

their partner is what makes sex an essential part of their leisure experience and their

QOL. For Claudette, it is the emotional connection she values most. Emotionally con-

necting with his wife is the pinnacle for Willy, “the intimacy we get from being sexually

active with each other is important.” Jess, who values the companionship from being

sexually active, discussed her love for the physical and psychological benefits, and the

self-esteem boost sex gives her:

I feel like I’m more upset or get more in a funk when I’m not having sex. One, I

think, the companionship is part of it, I feel like, accomplished with sex because I can get

somebody off. I can still do something. I do like that part. It makes me feel good, and it

releases energy. I’m definitely a lot happier when I’m having sex and feeling wanted.

Chad admits the physical connection of sex is most crucial and eludes to the concept

of flow:

I think as long as you’re doing it safely, I think sex is fun and healthy. And it just kind of

takes you away. There is a lot of aspects of our lives that are just completely shitty, and I

don’t think about any of those while I’m having sex.

When Chad was asked how sex relates to his sense of QOL, he said:

I have it going hand in hand because that’s just how important sex is to me. If I’m not

having sex, something is not going right. I’m just not happy. Sex is a big part of my

happiness. I think when you are having sex, you feel more confident, you feel better about

yourself, and its good exercise.

Other participants shared how sexuality ties to their leisure and QOL.

Aero: I’m extremely sexual; it keeps me sane and makes me feel good about life. As far as

quality of life, I think it’s important. I’m in a better mood. I think I would kind of relate it

to the people that need to see sunlight. When they don’t see sunlight in winter, I think it

would be like that. I would be in a downer mood.

Aldous: Sex is extremely important, and it definitely has an effect on how I feel. So much

happier when having sex, I have less anxiety and stress. So, it really sucks if something

interferes with sex night. So, it’s really important in my life, and my life is going better,

and I’m feeling better, and I’m just overall happier and more confident if I’m having sex.

When I don’t have it, I am sexually frustrated and just not complete. Ya know, the

endorphins you get, it’s great exercise too!

From the sample, eight sexually active participants revealed that sex is an integral

part of their lives. Given participant descriptions of sex, it is a vital leisure activity con-

nected to their QOL.

Perception is not reality

Nine participants conveyed perceptions regarding people without disabilities assump-

tions about their sexuality. Participants felt they were perceived as being incapable of

SEX AS LEISURE IN RESEARCH AND PRACTICE

78

having sex and talked about how some experiences left them feeling misjudged and

hurt. Aero: “I wish people would be able to look at people and not pre-judge.” Stormy

explains, “I’m happy to teach and talk to people about sexuality. There may be some-

body that says ’F off!’, but it makes you a better person for asking.”

Participants sharing experiences of being perceived as nonsexual was common. Sherry

explains, “I don’t think able-bodied people look at us and think, ‘oh, they’re definitely

having sex.’” Claudette agrees, “They definitely think that I can’t have sex. I think that

they think that we all can’t.” Others talked about how engaging in sexual activity post-

injury is much more difficult, due to the challenges of pursuing a partner while labeled

as nonsexual. Chad declares, “Initially, I don’t think they are able to see us sexually.”

Richard: It’s a lot harder to go out and pick women up being a quadriplegic. I feel like

women would look at me different, or they wouldn’t see me for who I am. I think they see

us as ’they don’t have sex.’

This nonsexual perception is explained and understood as the disability overshadow-

ing the person. Carlos feels like women do not look at him and think sexual thoughts:

They don’t think of you as that person. They aren’t thinking that maybe they are going to have a

relationship with you, they just think of you as, not intimidating, like a puppy dog. Like, aww!

You are so sweet, but ok, see you later. I think they just assume that we can’t have sex.

Carlos feels people without disabilities view him differently, indicating he once went

four years without sex. Frustrated, he retorted he would not have gone that long with-

out sex as a person without a disability.

Sherry discussed how she has been in public places and “petted” like a child. Aldous

shared a similar perception of feeling like a “pet,” seen as cute rather than sexual.

He speculated:

They just think that wheelchair equals being paralyzed and being paralyzed from the chest

down means you can’t feel anything, so they assume we don’t want sex. You can’t move

anything, so obviously you can’t get an erection. They are like I was before my accident; I

had no idea how spinal cords work. As a quadriplegic, I’m not even an option.

Another example of this perception came from Chad, who spoke about a girl he

flirted with one night. He explained how she wrote down her number and snapped,

“give me a call if you ever get out of this thing …the chair.” For Aldous, “there was a

girl, I really wanted to hook up with. I found out through friends that she said, ’Aldous

is so hot, too bad he is in a wheelchair… ’“He explained how outraged he was because

she was not willing to “look past the wheelchair.” Participants shared experiences where

men also considered other males with quadriplegia as nonsexual.

Aero: This girl and I were talking, and this guy kind of crowds in. I put my arm like, ‘her,

and I need a little space here.’ … He’s like, ‘what are you talking to him for? He’s in

a chair.’

Based on their accumulated experiences with the non-disabled population, the partici-

pants perceived that they are labeled as asexual by their peers without disabilities, mak-

ing finding a sexual partner more challenging. Those who identify as lesbian/gay face

additional stereotypes, creating more obstacles. Jess shared her views reflecting others’

sex normative and heteronormative attitudes:

SEX AS LEISURE IN RESEARCH AND PRACTICE

79

People assume that I’m asexual or straight. I am neither. I think most of them either think

‘she doesn’t have sex’, or ‘she doesn’t want to have sex’, but I probably do. [laughs] In my

mind, I think, ’ah, just give me twenty seconds to talk to you, and I can change

your mind!

People with quadriplegia and sex as leisure

Six participants viewed sex as leisure, and the remaining four described sex using leisure

qualities. When asked, ’Do you consider sex leisure’, the participants shared their

beliefs. Claudette answered, “yes, I would consider it leisure.” Aldous said, “sex is leis-

ure; it’s my favorite thing to do. I love doing it, and it makes me feel so much better

physically and psychologically. I would always choose sex over any other leisure

activity.” Both Aldous and Richard believed the physical aspect of having sex fits into

leisure. According to Richard, “it’s a good workout.” Jess recognized how sex involves

“getting off and relaxing,” making it leisure.

Willy: It’s a stress reliever. It’s the thing you look to do to unwind everything.

You want to feel that touch, you want to see… you want to have that physical sensation

with someone. Just to reset your mind. It’s definitely a leisure activity. It sets your mind

at ease.

While sex as leisure did not fit into four participants’ definitions of leisure, three par-

ticipants appeared to value sex as a pleasurable activity and ascribed leisure qualities to

sex. This notion is best captured by Stormy, who shared how playing video games is his

preferred leisure activity, but he will “drop a video game in a heartbeat” to have sex.

Three participants described sex as of higher importance than leisure, or resembling

“work” more than “downtime,” yet indicated they valued the enjoyment and pleasure of

sex. Aero explained, “I’ve always thought of it as a way higher priority than leisure. I

think of it as more of a challenge, and like, here I go. I guess it’s more of a competition

and more getting it done.” Three participants’ definitions of leisure referred to passive

activities. Sherry stated, “I always thought of sex as a job. Leisure is… naps, movies,

reading, and media.” Chad concurred, “Leisure is me taking it easy. When I’m having

sex, I’m not taking it easy. I’m on a mission. My mission is to make this girl feel like

she’s the only girl on the planet.” Stormy defined leisure as downtime, saying, “I

wouldn’t consider [sex] a job, but I wouldn’t consider it downtime either.” While these

three participants did not specifically define sex as leisure, they certainly ascribed leisure

qualities to sex.

Discussion

Based on our sample, PWQ are sexual beings. All sexually active subjects (9 of 10)

conveyed how they were more sexually gratified by the psychological enjoyment of pro-

viding pleasure for their partner. “Giving” became more prominent and pleasurable

post-SCI. The importance of sex for Stormy is based around his wife’s pleasure.

Reaffirming quadriplegic sex more often consists of the leisure aspects of sex rather

than one’s reproductive abilities. Participant narratives highlight the importance of psy-

chological arousal and the influence of psychological factors in sexual satisfaction.

SEX AS LEISURE IN RESEARCH AND PRACTICE

80

Whether pleasing a loving partner of many years or engaging in casual sex, providing

pleasure for partners was a significant theme of participants’ sexuality. More than

merely aiding their partner in achieving an orgasm, participants expressed profound

mental enjoyment in the process. Participants’ narratives support the work of Chance

(2002) and suggest they feel confident, taking pride in giving pleasure to their partner.

Chance discusses how men with disabilities often become more “tender” in their sexual

roles post-injury, increasing sexual satisfaction for both partners. Some men with a dis-

ability assert that they are better lovers as a result of focusing more on pleasing their

partner. Chad’s efforts to give PWQ a “good name” through giving pleasure provides

some evidence for this claim.

Short duration sexual encounters were not popular, suggesting that being a giver may

be a part of adapting to quadriplegic’s sexuality. Mental orgasms and a focus on psycho-

logical satisfaction rather than relying on physical satisfaction seemed to be a fulfilling

adaptation. Decreased sensation can result in immersion in one’s other senses. Our

findings indicate that being in the moment with any sensation experienced, visually tak-

ing in the bodies as they engage in sexual activity, and psychological arousal to the

point of experiencing a “mental orgasm” can be sexually satisfying. Although most

PWQ in this sample are engaging in penetration, they receive the most pleasure while

sexually pleasing others. Regardless of the underlying motives, it is clear that the act of

giving is gratifying and increases sexual pleasure for PWQ in this study.

Sex is an integral part of life for most of this sample. As was the case with multiple

participants during interviews, pre-injury sexuality seemed to predict post-injury sexual

desires supporting the findings of Torriani et al. (2014). Even though pre-injury sexual-

ity is necessary for understanding post-injury sexuality, our findings suggest that sexual

experiences for PWQ provide an opportunity to experience their disability as a non-

issue. For example, Jess loves the ’accomplished feeling’ of engaging in sexual activity as

a person with quadriplegia and providing pleasure for her partner just the same as peers

without a disability. Furthermore, being sexually active, enhanced positive moods,

boosting self-esteem, and confidence for many participants. Our subjects suggested that

sexual confidence may be crucial in adapting to sexual life post-injury. This finding sup-

ports the claims of Reitz et al. (2004) that one’s state of mental well-being can directly

relate to sexual satisfaction.

Most participants shared how they do not physically orgasm every time they have

sex, but find sexual fulfillment in sexual activities. This conclusion supports the findings

of Reitz et al. (2004), who noted that the physical organism or intercourse has no sig-

nificant association with sexual satisfaction. Participant narratives overwhelmingly indi-

cated that emotionally connecting with another person and giving pleasure increased

their QOL, supporting Reitz et al. The authors found achieving self-orgasm is not as

favored as hugging, kissing, touching, and giving oral sex. Regardless of physical ability,

sexual desire exists in almost everyone and is assigned personalized levels of import-

ance. SCI can disrupt daily living, but if one adapts to ability level, SCI need not negate

sexuality. Our findings suggest being sexual or not depends on the person, not their

physical capacities. While almost all participants described sex as leisure or assigned

leisure qualities to sex, for those who are sexually active, sex contributes to their over-

all QOL.

SEX AS LEISURE IN RESEARCH AND PRACTICE

81

Overall, participants of both genders agreed that non-disabled persons who do not

know them often view them as asexual, supporting the findings of Esmail et al. (2010).

Admittedly, several participants held this same view pre-SCI. Most participants felt they

were very sexual beings, supporting the findings of Rohleder et al. (2018). Our findings

support the idea that the misconceptions surrounding quadriplegic sex are primarily

derived from lack of education and seeing the wheelchair/disability instead of the per-

son. A problem for many PWQ, sexual invisibility comes from societal standards linked

to the idea that ability denotes sexual capability and attractiveness. Chance’s work

affirms that many people without disabilities stereotype PWD as asexual and as such,

are unwilling to be romantically involved with PWDs. All participants agreed that most

people without disabilities perceive them as asexual or incapable of having sex. Some

participant narratives suggest that sex provides a sense of wholeness. Whether proudly

stating “my face still works,” striving for the best sexual experience possible, or making

the sexual encounter all about the partner, these participants not only engage in sex but

find it is also an integral part of their QOL.

Chance (2002) explains, “societal stereotypes about the supposed asexuality of dis-

abled people deny the full humanity of people who in reality have the same need and

capacity” as non-disabled persons (p. 207). Asexual assumptions lead PWQ to perceive

that their sexual interests, availabilities, and abilities are not taken seriously.

Consistently receiving messages from non-disabled peers that disability translates into

asexual can cause harmful and long-lasting consequences for PWQ, particularly con-

cerning a person with quadriplegia’s sexual self-concept and self-esteem (Chance, 2002).

Although much of the non-disabled world has tried to deny PWQ are sexual beings,

participants resiliently refuted these stereotypes and have established a satisfying sex life

post cervical SCI.

Six participants viewed sex as leisure, assigning the same leisure qualities to sex as

leisure scholars. Of the four who indicated sex was something more noble or more

work than leisure, they also admitted or assigned leisure qualities to their sexual activ-

ities, supporting the results of Berdychevsky et al. (2013). Thus, given we did not define

leisure for participants, our findings reveal that PWQ can be sexual beings, and most

identify sex as leisure. Some PWQ view sex as a high form of leisure, sharing various

reasons for valuing sex as leisure. Richard and Aldous believed sex was great exercise,

and Willy and Jess loved how sex releases endorphins and helps one unwind.

After a cervical SCI, one’s life may undergo a series of drastic changes on a day-to-

day basis (Reitz et al., 2004). Sex as a pleasurable leisure activity has the power to make

one oblivious to daily hassles and may be a coping strategy (Berdychevsky et al., 2013).

In addition to pleasurable distraction, some participants, like Aero and Chad, discussed

sexual activity as achieving a state of flow. While Aero did not define sex as leisure, his

description of sex resembles flow: “sex is a higher priority than leisure.” In this context,

he also viewed having sex as a “challenge.” Some participants described how having sex

makes them feel more alive afterward. This rejuvenating effect has been discussed in sex

and leisure research by Berdychevsky et al. (2013). All sexually active participants agreed

that physical and emotional connection is what is most pleasurable, with personal

orgasm being much less crucial. The contact between partners, with bodies interacting

together, is abundantly satisfying (Chance, 2002). In this sense, narratives from

SEX AS LEISURE IN RESEARCH AND PRACTICE

82

Claudette and Jess support Aitchisones (2009) findings that sex as leisure is about the

connection or intimate relationship with a person rather than the activity itself. Our

conclusions indicate that PWQ are sexual beings who find that sex as leisure contributes

to their QOL. Most importantly, these findings assist in providing an understanding of

why and how PWQ engage in sex as leisure as part of our shared humanity, demystify-

ing misconceptions of PWQ and sex.

Limitations

While the primary investigator has quadriplegia, reflexive measures were taken to avoid bias.

First, the authorse assumptions and preconceptions were consciously examined with the help

of the coauthors. Recruitment yielded participants whom all identified as white, resulting in

a lack of racial diversity. Furthermore, it is essential to recognize that only three participants

were women. The current findings represent a small sample and are not necessarily repre-

sentative of all PWQ. People have wide-ranging experiences, which might not be embodied

by the current participant views. All of these issues suggest important avenues for further

research but do not dilute the importance of the findings presented in this paper.

Conclusion

The qualities of leisure bind us together regardless of ability, with many respondents iden-

tifying sex as leisure. By studying the perceptions of PWQ regarding their sexuality and

sex as leisure, we can help negate the misperceptions held by people without disabilities

concerning PWQ and sex. Our findings reveal that PWQ can be sexual beings. Most of

the respondents identify sex as leisure or associate leisure qualities with sex. After cervical

SCI, the body is altered, the sensation is reduced, yet we do not always detach from sen-

sation. Despite SCI injuries, we found a satisfying sex life is more than physical satisfac-

tion. As Reitz et al. (2004) suggest, sexual ability (genital function) is not totally linked to

sexual satisfaction post-SCI. Our findings discovered how engaging in sex is more for

pleasure than reproduction, noting that quadriplegic sexual satisfaction is often more

about providing pleasure for their partner than traditional orgasms. As Reitz et al. pre-

dicted, subjective influences have a greater impact post-SCI. Sexual activity was strongly

related to QOL in our participants. Perhaps with Wendel-Vos et al. (2004) finding a link

between physical leisure and QOL, and Brajša-Zganec et al. (2011) linking intimate leisure

and QOL, sex as leisure increasing QOL for subjects is due to sexual activity sharing both

physical and intimate pleasure components of leisure.

Several participants in this study admit that pre- SCI they were uninformed regarding

and sexuality. Until the masses are more educated about sex and PWQ, misperceptions

by non-disabled people will continue to persist. Academic investigations can dispel

incorrect assumptions, reducing all areas of stigma surrounding disability and sex.

Specifically, examining the sexual activities of PWQ could reduce misconceptions of

non-disabled and assist individuals with SCI adapting to their own sexuality.

Future studies on sex as leisure should focus on impairment due to the variances

among types of disabilities. For behind every physical difference between disabilities lies

even more psychosocial and sexual differences. Our work suggests that additional

SEX AS LEISURE IN RESEARCH AND PRACTICE

83

exploration is needed regarding the role of hegemonic masculinity in quadriplegic male

“givers.” Finally, it is noteworthy that two of the three women noted body image issues

as a serious factor regarding their sexual activity. Notably, none of the men mentioned

body image, highlighting a difference in females with quadriplegia may face. Although

body image did not rise to the level of a predominant theme, it warrants further

investigation.

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