ARTICLE

The journey of sexuality after spinal cord injury: Implications

for allied health professionals
Makrina Morozowski and Robert A. Roughley
School of Arts and Sciences, City University of Seattle in Canada, Calgary, AB

The purpose of this phenomenological study, which reflected the lived experiences of seven individuals living in Alberta with spinal
cord injury (SCI), was to gain insights into how individuals with SCI (a) are ill-equipped after injury with respect to post-injury
sexual function education, (b) explore their sexuality after injury, (c) learn about the importance of role models and friends living
with similar injuries, and (d) explain barriers to access reasonable care surrounding sexual health and counselling reflective of
intersectionality of sexuality and disability, among other factors. The intent is also to provide a basis for others living with SCI to be
aware that they are not alone in their experiences as well as inform others, including professionals working in the area of SCI, of what
some experiences of living with SCI are. This study uncovered real lived experiences of individuals with SCI and their experience of
sexuality and relationships after injury. Recommendations are highlighted with the intention of informing professionals, including
counselling psychologists and other health related professionals.
KEYWORDS: Counselling, recovery, relationships, sexuality, spinal cord injury

Human sexuality and cultural identities represent many diversi-
ties within the broad spectrum of sexual expression. The fields of
medicine and psychology have a history of pathologizing human
sexuality. Within such pathologizing narratives exist numerous
myths and misperceptions surrounding sexuality, sexual expres-
sion, disability-advancing stigma, marginalization, and the de-
fault assumptions surrounding historical beliefs that individuals
with disabilities are asexual or non-sexual beings. It is our belief
that such narratives result from pejorative and hegemonic power
structures that promote, instill, and maintain ableism. Our re-
view of the scholarly research exploring the lived experiences of
individuals with all forms of disabilities show that many persons
with disabilities view themselves as sexual beings.
The study called upon a phenomenological approach to gain
deeper insights into how individuals with acquired spinal cord
injuries (SCI) navigate the post-injury process and how this jour-
ney impacts their sexuality and sexual expression. The findings
of this study situate the lived experiences of individuals with SCI
and sexual expression within a sex positive framework. Through
our central focus on the lived experiences of seven individuals
experiencing acquired SCI, the findings of this study highlight
the numerous intrapersonal, interpersonal, and societal barriers
that impact the significant life transitions in how individuals ex-
perience sexuality following SCI.
Defining and Contextualizing Disability
The World Health Organization (WHO) defines disability as “an
umbrella term, covering impairments, activity limitations and
participation restrictions. Impairments are problems in body
functions or structures while activity limitations are difficul­
ties encountered by an individual in executing talks or actions”
(World Health Organization, 2020, para. 1). Within the disabil­
ity community there exists vast landscapes of expression of dis­
ability, including both visible and invisible disabilities such as:
physical, intellectual, cognitive, and mental health. Within the
experience of disability are individuals who are born with a dis­
ability and those who become disabled. For the purpose of this
article, we focus on individuals who become disabled through
acquired SCI.
Through the lens of critical disability theory, we believe that
social justice research represents possibilities for emancipation
and the continuation of discourses that challenge dominant dis­
courses surrounding individuals identified as disabled (Goodley,

ACKNOWLEDGEMENTS: We would like to acknowledge Dr. Don Zeman for his critical review and editorial suggestions in the completion of this
manuscript.
CORRESPONDENCE concerning this article should be addressed to Makrina Morozowski, City University of Seattle, Calgary Campus, School of
Arts and Science, 1040 7 Ave SW, Calgary, AB T2P 3G9, Canada. E-mail: makrina.morozowski@gmail.com

354 The Canadian Journal of Human Sexuality, 29(3), 2020, 354–365 • https://doi.org/10.3138/cjhs.2020-0024

Liddiard, & Runswick-Cole, 2018; Meekosha & Suttleworth,
2009; Schalk, 2017). We argue that human sexuality is an essen­
tial component of human expression and we view this research
initiative through multiple lenses. An additional lens to engage
in social justice and advocacy in counselling psychology is to
adopt a sex positive approach to supporting individuals with SCI.
Regardless of the diverse definitions of sex positivity, Ivanski and
Kohut (2017) established the following themes amongst com­
peting discourses: personal beliefs, education, health and safe­
ty, respect for the individual, positive relationships with others,
negative aspects, and other noteworthy facets.
The Research Question
Within this study, the researchers asked: What is the lived expe­
rience of adults in sexuality development and expression follow­
ing SCI?
Literature Review
Within our review of the literature, we came across information
that enabled us to situate our research question into current
Canadian contexts. One essential theme within the literature was
the international attention being placed on research associated
to SCI. An additional observation included the prevalence of re­
search focused on the lived experience of individuals post-SCI.
We have organized our review of the literature into the following
sections: (a) spinal cord injury, (b) mental health and wellness,
and (c) sexual health education.
Spinal Cord Injury
According to the Rick Hansen Institute, approximately “86,000
Canadians currently live with SCI, increasing to an estimated
121,000 by the year 2030” (McIntosh, Charbonneau, Bensaada,
Bhatiya, & Ho, 2020, p. 113). SCI can result from traumatic or
non-traumatic means. Traumatic SCI results from an external
physical impact to the spine, which can include a motor vehicle
accident (Shank, Walters, & Hadley, 2019), falls (Bárbara-Bataller,
Méndez-Suárez, Alemán-Sánchez, Sánchez-Enríquez, & Sosa-
Henríquez, 2018), or violence (Wallace, Sy, Pietz, & Grandhi,
2018). Non-traumatic SCI is a result of medical conditions that
impact the spine and cause injury such as infectious and inflam­
matory/autoimmune (i.e., myelopathy, transverse myelitis, or
infection) (Barclay, Lentin, Bourke-Taylor, & McDonald, 2019;
Grassner et al., 2016) conditions. The most common type of SCI
for women is trauma based, and the injury is located in the dorsal
region of the spinal cord (Otero-Villaverde et al., 2015), while
for men, SCI is more often than not due to motor vehicle injury
(Engblom-Deglmann & Hamilton, 2020).
Spinal Cord Injury as Life Transition
The first year post-SCI, the experience brings potential complica­
tions related to physical and mental health well-being (Stillman,
Barber, Burns, Williams, & Hoffman, 2017). Embedded within
this life transition exists numerous complexities in the identi­
ty renegotiation of individuals experiencing SCI. First, it must
The Canadian Journal of Human Sexuality, 29(3), 2020, 354–365 • https://doi.org/10.3138/cjhs.2020-0024
The journey of sexuality after spinal cord injury
be noted individuals have their own unique response to their
SCI (Alve, Bontj, & Begum, 2019). Within this period of adjust­
ment, it is quite common for individuals with SCI to experience
a vast array of emotions and psychosocial challenges (Mahooti,
Raheb, Alipour, & Hatamizadeh, 2020). Embedded within these
emotions is often a sense of grief and loss (Murray, Van Kessel,
Guerin, Hillier, & Stanely, 2019). In addition to the loss of iden­
tity, it is common for individuals with SCI to experience mental
health concerns (Zürcher, Hannah, & Fekete, 2019), including
depression (Adhikari, Gurung, Khadka, & Rana, 2020), conver­
sion disorder (Vikas & Divya Parashar, 2019), and denial and
shock (Read, Hill, Jowett, & Astill, 2016).
Dominant culture plays a significant role in the attitudinal
perspectives of society surrounding sexuality and persons with
diverse abilities (Ditchman, Easton, Batchos, Rafajko, & Shah,
2017). Hegemonic discourses are saturated with ideas that any
person with a disability is asexual or unable to engage in sex
(Esmail, Darry, Walter, & Knupp, 2010). Rembis (2010) invites
readers to move beyond the binaries of sexuality and disability,
by deconstructing the belief of sex and disability as mismatched
lived experiences. Many scholars in the academic literature
advocate for the demystification and implementation of mea­
sures to address common misconceptions surrounding sexual
expression for individuals experiencing SCI (Christian, Gray,
Roberts, & Eller, 2019).
Mental Health and Wellness
Mental health remains a major source of stigmatization, mar­
ginalization, and oppression (Sandu, Arora, Brasch, & Streiner,
2018). According to recent statistics, one in five Canadians will
at some point in their lives experience mental health concerns
(Canadian Mental Health Association, 2019). Social justice
and advocacy initiatives have been well established on Local,
National, and International levels in attempts to minimize stig­
ma and educate communities about mental health (Flaskerud,
2019). When individuals have multiple intersecting identities
that commonly receive prejudice, discrimination, and patholo­
gization, it is not surprising that such forms of multiple mar­
ginalization may influence an individual’s overall mental health.
As with all forms of traumatic experience, individuals experi­
encing SCI are susceptible to acute and long-term mental health
concerns. Recent research indicates that an individual’s mental
health is often significantly impacted following SCI (Zürcher
et al., 2019).
Self-Esteem and Self-Efficacy
The discussion of self-esteem and self-efficacy is situated within
the academic literature (Kim, Kim, & Choi, 2018; Torregrosa-
Ruiz, Molpeceres, & Tomás, 2017). Jørgensen and Skavberg
Roaldsen (2017) discussed the importance of negotiating the im­
portance of identity and self-image. Internal factors that impact
sex and sexuality may include body image (Bailey, Gammage,
van Ingen, & Ditor, 2017; Van Diemen, van Leeuwen, van Nes,
Geertzen, & Post, 2017), self-confidence (Bisson & Newsam,
2017), self-esteem (Sramkova et al., 2017), and spontaneity
(Parker & Yau, 2012). Lejzerowicz and Tomczyk (2018) explored
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the implications of such factors and influence of acquired dis­
ability on identity integration. Additional areas of concern iden­
tified in the scholarly literature included spiritual well-being
(Khanjani, Khankeh, Younesi, & Azkhosh, 2019), depression
(Craig, Tran, Guest, & Middleton, 2019), and anxiety (Eaton,
Jones, & Duff, 2018).
Suicidality
Suicidality and or suicidal ideation represent significant mental
health concerns for individuals experiencing traumatic SCI (Lim
et al., 2017). Savic et al. (2018) found that within their sample of
2,304 participants with SCI that 4.2% of deaths were by suicide,
with 91% of these deaths occurring in the first decade following
injury. In their exploration of self-harming behaviour pre- and
post-SCI, Kennedy and Garmon-Jones (2017) highlighted the
imperative of risk assessment for individuals with both SCI and
mental health diagnoses. McCullumsmith et al. (2015) identified
the following factors associated to suicidal ideations and attempts:
levels of environmental reward and control, spiritual well-being,
and severity of SCI. As identified in the scholarly research, hope­
lessness represents a significant indication for the potential for
suicide attempts or death by suicide (May, Pachkowski, & Klonsky,
2020; Tucker et al., 2018). Research exploring hope and resiliency
(Kornhaber, Mclean, Betihavas, & Cleary, 2018; Tansey, Bezyak,
Kaya, Ditchman, & Catalano, 2017) offered positive health impli­
cations for individuals experiencing SCI.
Sexual Health Education
Sexual well-being is an essential component in the lived experi­
ences of individuals experiencing various forms of physical dis­
ability (Lee, Fenge, & Collins, 2019). Within the literature, there
appears to be numerous and competing definitions of sexual
well-being. Lorimer et al. (2019) argued that current definitions
of sexual well-being are diverse and do not fully encapsulate all
dimensions of sexual well-being. However, in our review of the
literature, access to inclusive and relevant sexual health educa­
tion was essential for individuals experiencing SCI (Kim et al.,
2018; Rodger & Bench, 2019). Research indicates that numer­
ous systemic barriers are present within the health care system
that restrict individuals with SCI to sexual health information
(Lynch & Fortune, 2019; Wittkopf, Sousa, Cardoso, & Sperandio,
2018). Silva et al. (2018) reported that 36% of their sample ex­
pressed varying levels of dissatisfaction with the sexual educa­
tion and information they received. Studies indicate that women
with SCI are more likely than men to be dissatisfied with sexual
health education post SCI (Otero-Villaverde et al., 2015).
Herson, Hart, Gordon, and Rintala (2012) discussed and
advocated for the identification and dismantling of barriers
through adequate sexual health information within rehabil­
itation settings, and there appears to be limited consensus
on best practices in this area. Bodner (2011) identified the
important message asserted by the American Consortium
for Spinal Cord Medicine, that “no injury, no matter how se­
rious, can take away your ability to have a relationship, experi­
ence love, and experience the attraction between two [or more]
356 The Canadian Journal of Human Sexuality, 29(3), 2020, 354–365 • https://doi.org/10.3138/cjhs.2020-0024
people” (p. 201). Mona, Cameron, and Clemency (2017)
called upon practitioners to engage in the practice of dis­
ability culturally competent sexual healthcare. Numerous re­
searchers within the allied health professions have explored
and discussed the implications of substandard sexual health
education with individuals experiencing SCI. Engelen, Knoll,
Rabsztyn, Maas-van Schaaijk, and van Gaal (2020) conducted
a systematic literature review exploring sexual health com­
munication between healthcare professionals and communi­
cation with individuals with chronic conditions. They found
that four essential determinants are required to improve sex­
ual health communication: attitudes, beliefs, knowledge, and
self-efficacy.
Korse, Nicolai, Both, Vleggeert-Lankamp, and Elzevier (2016)
recommended that it is imperative for medical physicians, in
this case, neurosurgeons, to either educate their patients about
sexual health and function or refer them to other allied health
professionals. However, despite such recommendations, access
to sexual health information continues to be limited. Barriers to
sexual health education often result from hesitancy of clinicians’
lack of culturally responsiveness care, and perceived discomfort
(clinician and/or client) (Hartshorn, D’Castro, & Adams, 2013;
Szlachta & Champion, 2019). Rodger and Bench (2019) provided
an interesting discussion surrounding the importance of accurate
and timely education for individuals with SCI, including infor­
mation provided throughout the health condition and rehabilita­
tion journey, as well as systemic barriers such as staffing, knowl­
edge, and skills of practitioners. According to Esmail et al. (2010),
if there is no discussion about sex with individuals post-SCI, it
may further reinforce dominant narratives and myths about sex­
ual expression amongst this population.
METHOD
Researchers engaging members of vulnerable populations often
utilize qualitative research methods to give voice to the experi­
ences of individuals experiencing marginalization and oppression
(Shaw, Howe, Beazer, & Carr, 2019). We called upon transcen­
dental phenomenology (Husserl, 1970), which is often identified
as the descriptive phenomenological approach (Giorgi, Giorgi, &
Morely, 2017). Phenomenology is a type of qualitative research
that aims to describe and understand certain elements of human
experience, specifically the “what” and “how” of the experience
(Creswell & Creswell, 2018). This study was approved by the
Institutional Review Board at City University of Seattle.
Sampling and Participants
We engaged several community organizations that support indi­
viduals with SCI and five of these organizations provided permis­
sion to advertise this study via their onsite and social media plat­
forms. Both researchers posted the call for participants to their
personal and professional social media platforms. Purposeful
sampling was used to identify and select sources of data that
will result in capturing rich descriptions of the lived experience
(Miles, Huberman, & Sanldaña, 2020). In order to participate in
this study, participants were required to be (a) an adult between

the ages 18–50 with SCI, (b) a resident of Canada, (c) English
speaking, and (d) have had their SCI for a minimum of three
years. Eleven individuals contacted the primary researcher via
email to voice interest and curiosity in participating in the re­
search. From these 11 potential participants, seven decided to
engage in the research as participants.
All seven participants were self-referred and met the criteria
to participate in the study. The seven participants were between
26–45 years of age (Mage = 39 years). The participants included
three females (cisgender) and four males (cisgender) and one
female participant stated being a “tomboy.” Five participants
self-identified as heterosexual, while two self-identified as bisex­
ual. Current relationship status for the seven participants ranged
from single (1), dating (3), engaged (1), married (1), and long-
term relationship (1). Each SCI for the participants were unique
for themselves and injuries ranged from the lumbar regions of
the spine to the cervical regions. Two of the participants attained
complete SCI, whereas five of them had incomplete SCI. Two
individuals described their injuries as paraplegic, four as quad­
riplegic, and one as hemiparesis. All of the participants acquired
their SCI at some point in their lifetime after birth. Almost all of
the participants, with the exception of one, experienced a sense
of trauma with their injury.
Data Collection and Analysis
Data collection in this study involved intensive phenomenologi­
cal interviewing with participants (Englander, 2019). Interviews
took place via face to face conversations either in-person or via a
video-conferencing application known as Go-to-MeetingTM. The
duration of each interviewed varied between 45–90 minutes in
length. The interviews were transcribed into verbatim text. A
pseudonym was given to each participant in order to provide
confidentiality while safeguarding the participants from poten­
tial harm. Prior to the data analysis process, participants were
provided with the opportunity to review their transcripts for
accuracy.
Data Analysis
Interview transcripts were coded using a common line-by-line
procedure often used in qualitative data analysis (Tracy, 2020).
The themes were coded using a commonly used coding software
known as NVIVO (Miles et al., 2020). Upon completion of the
coding process, the second author reviewed the resulting cate­
gories and themes. The final step of the coding process involved
both authors arranging the final set of categories and themes ac­
cording to best fit. Feedback from participants, in the form of
member checking, confirmed that the central themes were rep­
resentative of their lived experiences.
Trustworthiness
When engaging in qualitative research, the notion of trustwor­
thiness is essential to demonstrate credibility of the findings
with diverse strategies that ensure academic rigour (FitzPatrick,
2019). Both researchers engaged in the process of bracketing
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The journey of sexuality after spinal cord injury
(Baksh, 2018) in order to minimize potential biases from being
imposed on the lived experiences of participants. Various strat­
egies were employed to increase the overall trustworthiness of
the study, including: triangulation of multiple data sources, en­
gaging in critical reflexivity, member checking, soliciting and re­
ceiving feedback from participants, generation of rich and thick
descriptions, and peer debriefing (Creswell & Creswell, 2018).
RESULTS
Three main themes emerged in our results: (a) initial recovery—
the journey begins, (b) post-recovery—the journey continues,
and (c) perceptions of society. Each theme and respective sub­
themes are described and supported from statements taken from
the interview transcripts from the seven participants in this
study. We have included quotations from the participant inter­
views to support the themes identified from the data analysis
process.
Initial Recovery—The Journey Begins
The initial recovery—the journey begins theme encompasses
two subthemes, including recovery sexual education and shared
experiences. The period right after injury for many included a
plethora of information, new experiences, and the desire to con­
nect with others who have lived similar experiences with SCI
and sexuality.
Recovery Sexual Education
The theme recovery sexual education represents a fundamental
need for individuals experiencing SCI. Within this theme, all fe­
male participants who suffered non-traumatic SCI identified the
prevalence of male-specific sexual health resources within their
recovery settings.  These female participants felt underrepre­
sented within the sexual health education materials provided to
them post-injury. In comparison, most of the male participants
felt like sexuality was not addressed satisfactorily, and the mate­
rials provided to them focused on biological and reproductive
health. For all participants, accurate and culturally sensitive ma­
terials linking SCI and sexual expression/pleasure were negligent
at best.
They gave me like a big book, to go over, and the sex part of it, I
remember it being…it did not tell me anything about my female
reproductive system. It told me all about how my male reproduc­
tive system might be affected. (Julia, 28)
While differences appear to exist in the experiences of partici­
pants and sexual health education, the notion of the absent, but
implicit, seemed to reinforce biases and misperceptions of sexu­
ality amongst individuals with SCI.
Shared Experiences
The sub-theme of shared experiences emphasized the notion of
feeling “normal” and “not being the only one” in relationship
to SCI. The sub-theme of commonalities as shared with others
who experienced SCI was critical in the adoption of their new
357
Makrina Morozowski and Robert A. Roughley
sense of identity.  Six participants spoke of the importance of
role models and the significance of mentorship from others with
SCI during the early stages of transition post-injury.  Mentors
would often visit them in the hospital and make recommenda­
tions for transitioning back into society. For many, the return
to sports and hobbies they engaged in pre-injury represented
a space of comfort and safety.  This reconnection with pre-
SCI activities, in tandem with access to additional supports via
social networking, proved to be beneficial and meaningful for
most participants.
The group at the basketball club, the ones that are injured any­
way, they are a lot like me. Where they are very open, you know,
not a lot to hide. You know, you ask them a question and you are
going to get an honest answer. So anytime I ever had a question
about something or if someone had a question for me as well,
it was a very comfortable group and easy to share with them.
(Jacob, 43)
At times, there were fears of judgment around sexual “perfor­
mance” that the participants questioned for themselves, whether
sex and disability were compatible. Others placed sexuality as a
lesser priority in their post-injury journey.
Post Recovery—The Journey Continues
The second theme, post-recovery—the journey continues, includes
three subthemes: intrapersonal factors, interpersonal factors,
and barriers. As with all forms of life transitions, the relation­
ships we form with others are often situated in power-based
and dominant cultural narratives. This includes how individu­
als form relationships with self, with others, and how they ex­
perience connections within the socially embedded barriers of
society.
Intrapersonal Factors
For all participants in this study, the relationship with self was
reliant upon diverse factors surrounding how to move forward
and integrate their previous sense of self with their post-injury
identity formation. As sexual behaviour and expression is often
an integrative component in one’s integrative health wellness, a
fundamental process of relearning involves the reintegration of
the “new body” into all forms of intimate relationships, includ­
ing with self.
The findings of intrapersonal factors include, personal fac­
tors, unhelpful individual factors, and motivations. This theme
highlights the importance of unlearning and relearning of how
to navigate old ways of being, with new possibilities. Through
such processes, a self-directed approach to self-awareness and
discovery allowed participants to re-experience a newfound re­
lationship with their sexual selves.
It is more than just the physical. Being comfortable in your
own skin. Learning how to, I guess, control it and flaunt it
[sexual expression]. Looking into yourself to challenge your
views of sexuality and in maybe, what you thought about it
before and how you think about it now. Because I think even
just our views about people with disabilities and sexuality
358 The Canadian Journal of Human Sexuality, 29(3), 2020, 354–365 • https://doi.org/10.3138/cjhs.2020-0024
before we have a disability. How that changes our view…how
our view changes now that we have…we are a person with a
disability and our view of sexuality. (Marcie, 37)
Part of their processes of relearning their sexuality was recogniz­
ing both the importance of sexuality as a person and what that
means living with an SCI. Additionally, sexuality is much more
than just the physical act of sex, and extends to emotional, sen­
sual, and physical intimacies.
Helpful Personal Factors. Participants spoke about factors that
helped develop their sexual identity after injury. Each participant
spoke at least once about how resiliency, confidence, and self-esteem
aided their positive sexual identity journey.
Teaching, I think self-esteem, sense of self of some kind. I do not
think you teach someone to have good self-esteem or confidence.
However, your sense of self is very important for your own sexu­
ality, I would say. (Mercedes, 26)
The sense of self is altered after injury. For many of the partici­
pants, it took time, patience, and practice to re-integrate the con­
cepts of resilience, confidence, and self-esteem back into their lives.
Unhelpful Personal Factors. Many of the men discussed insecu­
rities with their altered sexual identities, though they spoke
about it within a grief framework. This grief surrounded sexual
ability and hegemonic ideas of masculinity that, for them, came
to an instant stop and caused them to question if they are a
masculine man.
Especially young men, who are predominately having the spinal
cord injury, there is a lot of question marks around that and
doubts and insecurities. Then again, there is the social pressure
to be strong, able bodied, fit, carrying a woman into the sunset
on the beach. Therefore, when that disappears then there is a lot
of self-doubt. (Zeus, 35)
All participants identified media and social ideal; specifical­
ly, how such pressures often dictate how individuals should be
in the sexualized image of male and female. When one cannot
reach this unattainable standard, insecurities can develop for
both men and women with SCI. Hegemonic ideals including
toxic masculinity, gender-role socialization, and the narrative
of performative sexuality appears to further marginalize and
pathologize individuals with SCI and sexual expression.
Motivation. Participants spoke about how their SCI led them to
motivate themselves to explore their sexuality in different ways.
Many men expressed that their focus before the injury was on
themselves, though it was now turned to their partner, motivated
to keep the other sexually satisfied. As time progresses, we will have
different experiences that constantly shape, reshape, provide rein­
forcement (Zeus, 35).
It is part of human nature to be connected with others in
different ways. The participants, both men and women, shared
that they found the motivation to explore their own body and
the sexual relationship with others. Hence, despite not receiv­
ing adequate sexual health education post-injury, participants
found the motivation to express their sexualities through re-
connection with their body post-SCI.

Interpersonal Factors
For the participants, the ability to connect with others within so­
cial contexts was fundamentally important. Such connections were
essential and paramount to their recovery journey. Identified
areas of discussion relate to interpersonal factors include rela­
tionship development, communication and collaboration, and
intimacy. As a whole, this theme speaks to the overall impact
that relationships play in the recovery process.
Relationship Development. Many participants spoke about a time
after injury in which they had to explore their new bodies. They
found that, after injury, they had to take time to develop a rela­
tionship, show their personality, and work on gaining trust with
potential romantic/sexual partners. Some felt like relationships
after injury were less spontaneous. “I find it’s got to be a little bit
more…getting more in a comfort zone with somebody… talking
wise more than it’s like…hey…it’s not like an instant love at first
sight kind of thing” (Jacob, 43).
It was a perspective from many of the participants that one-
night stands after injury were less likely to occur after meeting a
person that same night. As a reaction to this, participants often
engaged in more conversations, some revolving around sexual­
ity and functionality, which may have progressed relationships
to romantic levels; however, in some instances, such discussions
resulted in decisions not to pursue relationships further.
Communication and Collaboration. It was a common thread of
conversation among the participants that communication after
the injury became an even more essential part in navigating rela­
tionships and sexual intimacy. “It is like anything you are doing
with relationships, whether it is sex or not sex. If the communi­
cation part is no good, then you are just setting yourself up to fail”
(Jacob, 43).
Many spoke of the interaction that was required with the oth­
er person (sexual partner). They described how they, at times,
needed to work together, collaborate, through the sexual experi­
ence. Some spoke of how, after injury, there were many things to
consider, mobility, senses, and reflexes such as autonomic dysre­
flexia that needed to be respected. “I would say my current lover,
my partner was definitely a big portion in discovering my sexuality”
(Mercedes, 26).
All of the participants had been in at least one relationship
since injury, and many highlighted how important it was for
positive relational development to work with one another when
negotiating sexual expression and expectations.
Intimacy. As SCI often impacts the sensory and movement below
the injury, there was a shift that was present with the participants
from a first physical act of intimacy towards a mental process of
intimacy with their partners.
Stimulation and satisfaction is mental now…you take the whole
package between the physical contact, the touching…and the
mental aspect of it [intimacy] that has combined to make you
know what a spinal cord injury person could perceive as an or­
gasm. I guess… you know when the more excited the female gets
then the more excited it makes me. (Jacob, 43)
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The journey of sexuality after spinal cord injury
The participants highlighted that through their lived experiences
of obtaining SCI, they have had to rely on different aspects of
intimacy to support and continue to increase their relationship
with their partners.
Barriers
As with many individuals, who experience the world outside the
hegemonic ideal, socially situated barriers are often as limiting as
those that are anatomical. Areas within the discussion of barriers
include both injury-based and non-injury-based barriers. While
such obstacles may be perceived to act independently, many ex­
perience barriers as an integration between the SCI and the en­
vironments in which they find themselves situated.
Injury Based. All participants identified both the primary and
secondary effects of SCI and the experience of barriers through­
out their post-injury experience. Primary effects often related to
the loss of mobility and sensory expression. Some of the initial
results, which differ depending on the level and completeness of
SCI, included decreased mobility and sensation within genital
areas. The secondary effects of SCI occur after the injury takes
place, and some effects include pain, autonomic dysreflexia,
and hypersensitive zones. Therefore, while barriers of primary
and secondary impact are a shared experience, the individual
response to such barriers is often unique and personal.
They are almost in the area [above injury] of do not even touch
sort of areas. There are sometimes where I will get into bed and the
girlfriend will want to cuddle or something and I will say, “You’ve
got to wait 10 minutes because it’s not even enjoyable. It’s almost
on the borderline of painful,” as it is just ultra-sensitive. (Bob, 43)
Individuals with SCI may be impacted by different secondary
conditions related to the SCI that affect sexual expression. For
those experiencing autonomic dysreflexia, if they do not stop en­
gaging in what is causing it, it could lead to death.
Non-Injury Based. Non-injury based barriers appear to be expe­
rienced within intimate and sexual relationships. These barri­
ers spoke to the visible baggage that people assume they have
because of SCI. From a socially constructed perspective, there
appears to be a misinformed assumption that partners (espe­
cially female partners) of an individual with SCI are support
caregivers and not their partners. Concerning relationships, it
was shared how key it is to be each other’s partners and remove
the caregiver role from that relationship.
I said, you know, if you [spoken to his friend] make her your care­
giver, your relationship is not going to last. Moreover, I am quite
open about it [combining the roles of care giving and partner re­
lationship]. As if she is your caregiver, your relationship is not
going to last, you have to be a lover, not a caregiver. (Kevin, 30)
In relationships, many people take on caregiver roles at differ­
ent times, depending on the situation. Though support may be
needed more in specific areas within the relationship of those
impacted by SCI, separating the roles of partner and caregiver
are essential to maintain boundaries of healthy relationships.
359
Makrina Morozowski and Robert A. Roughley
Perceptions of Society
From the perspective of those currently living with an SCI, all of
the participants shared how, in general, negative views associat­
ed with SCI, sexuality, and relations are common. Some spoke of
the perception held by many people that sex is not possible if you
are in a wheelchair. Others talked about how for relationships,
most feel like they become friends, and there is often a hesitation
to be in a sexually active relationship.
People do not really see people in a wheelchair as being sexual.
I think it is somewhat like, uh you are handicapped, you are in
a wheelchair, and you probably do not even do that [have sex].
(Julia, 28)
From a top-down perspective, individuals are impacted by the
ideas that are integrated into society; if you have a disability,
there is likely a myriad of other influences affecting you con­
currently. Sexuality is something that people are starting to have
conversations about which is supporting sex-positive sexuality
and relationships, which over time will lessen the burden experi­
enced by those with SCI.
DISCUSSION
Research over the past five decades demonstrates an interest
and attention to sex, sexuality, and disability. Despite such at­
tention and associated recommendations made, there appears to
be gaps in the delivery of the message and the integration of
the recommendations into practice. What remains consistent is
the knowledge that individuals who experience SCI have their
own, unique transitionary journey associated to their newly ac­
quired disability and way of living. The findings of this qualita­
tive study offer some possible insights into these individuals, yet
shared experiences. During the initial recovery stage, many in­
dividuals with SCI are faced with a period of relearning. Within
these relearning processes include learning new occupational
and social tasks through a different lens (i.e., maneuvering self
in a wheel-chair, engaging in interpersonal relationships). Part
of this relearning process is the necessity of accurate, inclusive,
sex-positive and non-pathologizing education and training.
Such edifications need to extend beyond individual-centered ed­
ucation and include other important stakeholders in the lives of
individuals with SCI (i.e., intimate partners). This is consistent
with the findings of Eglseder and Demchick (2017).
A second and very important area for discussion is that
ableism appears to remain present in services offered to indi­
viduals with SCI. As noted by O’Dell, Earle, Rixon, and Davies
(2018), adequate support is essential when the individual expe­
riencing SCI is ready to accept such assistance. Part of receiving
such supports comes from peer mentorship and other peer-based
initiatives. This appears to be of central importance as individu­
als experiencing SCI deconstruct their own beliefs associated to
dominant narratives, they learned prior to SCI. For many, such
peer-based supports played a significant role in their period of
life transitions following SCI. Those living with SCI may consid­
er themselves as members of a vulnerable population.
360 The Canadian Journal of Human Sexuality, 29(3), 2020, 354–365 • https://doi.org/10.3138/cjhs.2020-0024
Navigating relationships differed after SCI. The male partici­
pants shared that sex became much more than a physical act (a
pre-injury belief) and included emotional and relational intima­
cy, with focus directed to their partner. Maintaining a positive at­
titude in the new sense of self was verbalized by many of the par­
ticipants, in conjunction with grief being mentioned as a process
that a majority experienced. Interpersonal factors highlight the
interaction between partners in a relationship. Participants ex­
plained that relationships took much longer to develop and were
less impulsive in comparison to pre-injury. Similar to able-bodied
relations, it was shared that, when communication is lacking, re­
lationships start to experience hardship. Navigating the world
post-injury was unique to all participants; wherein both physical
barriers may need to be modified and physiological conditions
need to be known (i.e., autonomic dysreflexia).
For participants in this study, sexual expression existed on a
continuum, each person’s experience is unique and can change
throughout time given personal experiences. The range of sex­
uality is the same spectrum for those with disabilities and SCI
as well as non-disabled folks. Sexuality, sexual orientation, and
gender identity cover a vast landscape of relational possibilities.
There is a high percentage of those that believe that individuals
with SCI are asexual, and this concept can often be attributed to
the medical model of disability that can be quite pathologizing
in nature (Federici, Artegiana, Diotallevi, Caruso, & Castellani
Mencarelli, 2020). Though some individuals may be asexual, SCI
does not inherently lead to someone being asexual (Merghati-
Khoei et al., 2020). The impact of being viewed as asexual can
result in secondary affects that range from low self-esteem, feel­
ing sexually unattractive, fear of rejection, lower interest in at­
taining sexual relationships, and impact the perception of self
(Kathnelson, Kurtz Landy, Tanim, & Gage, 2020).
We believe it is imperative that allied health professionals as­
pire to co-create safe and respectful spaces where individuals with
SCI can discuss and explore sexuality, free from stigma and mar­
ginalization. By doing so, we co-create opportunities to challenge
and explore misinformation and/or myths about SCI and sexual
expression. It has been well documented within the literature that
a default onus is placed on individuals with SCI to bring their con­
cerns and questions about sexuality to health care professionals
(Aikman, Oliffe, Kelly, & McCuaig, 2018). We believe that it is the
responsibility of allied health professionals to assume the role of ini­
tiating such conversations. Often members of allied-health teams
act in different roles during the rehabilitation process; however, we
have learned that individuals who have recently experienced SCI
are often unsure about which team members to approach about
their questions pertaining to sexuality. This imperative is consis­
tent with the findings of Eglseder and Webb (2017).
Limitations of the Study
As with all forms of research, this study has limitations. The over­
all size of the sample of seven participants represents a limitation
in this research. The sample in this study were predominantly
Caucasian. It is our opinion that the more culturally diverse the

sample is in qualitative research, the more meaningful the repre­
sentation of the Canadian multicultural mosaic. Gender within this
sample represented self-identified cis-males and cis-females. While
shared experiences were identified amongst gender representation,
a study focusing on one gender might have yielded different find­
ings. The age of participants (Mage = 39 years) represents a potential
limitation is this study. The experience of SCI is not limited to this
age representation. Exploration of intergenerational differences
with SCI and sexuality may positively add to research in this area.
The generalizability of this study is extremely limited. Therefore, we
view the findings of this study as essential starting points for neces­
sary discussions to unfold within the scholarly research.
Recommendations and Fundamental Next Steps
Competency Development
Counsellors and allied health professionals require specific com­
petences in order to provide comprehensive and culturally sen­
sitive sexual health care to individuals experiencing disability
(Brottman, Char, Hattori, Heeb, & Taff, 2020; Mona, 2017). Biases
and misunderstandings surrounding sexual expression of indi­
viduals with SCI create barriers and access to sex-positive coun­
selling services (Burnes, Singh, & Witherspoon, 2017a). Arthur
and Collins (2014) called upon counselling practitioners to adopt
a social justice lens, thereby engaging social justice as a “guiding
value” in our work with individuals with diverse cultural identities
(p. 173). O’Dea, Shuttleworth, and Wedgwood (2012) supported
the notion that health care providers can play a significant role in
positively affecting the sexual wellbeing of individuals with SCI.
We challenge all counselling and allied health professionals to crit­
ically review and reflect upon their current assumptions and bias­
es, and develop a plan of action to expand their practice to engage
clients with SCI as healthy and expressive sexual beings.
Graduate Programs and Training
Training graduate students, entry-level practitioners, and sea­
soned professionals about the importance of engaging clients
in discussions exploring sexual health and sexual well-being
is an ethical imperative. To date, many graduate programs in
counselling psychology neglect the topic of human sexuality
and sex-positive approaches to client-care (Burnes, Singh, &
Witherspoon, 2017b). With this essential point made by Burnes
et al., coupled with results of this study, we invite graduate pro­
grams in the allied health professions to critically examine their
current curriculum and explore pedagogical opportunities to
engage learners in critical conversations surrounding sexuality
and disability as intersectionalities within the cultural identities
and expressions of current and future clients.
Research Methodologies
Within the literature we explored in this study, we wish to ac­
knowledge the preponderance of research exploring SCI and
sexuality using quantitative research methods. While we see the
value of such approaches to research, we highlight the important
The Canadian Journal of Human Sexuality, 29(3), 2020, 354–365 • https://doi.org/10.3138/cjhs.2020-0024
The journey of sexuality after spinal cord injury
role that diverse qualitative methodologies are likely to play in
accessing the lived experiences beyond the statistical findings of
research studies. Further, we believe that mixed-methodologies,
including the exploratory and explanatory, will offer deeper in­
sights and richness to our current and future understanding of
the experiences and needs of individuals with SCI.
Policy and Practice
Several areas regarding policy and practice have been identified
in the scholarly literature and the lived experiences of partici­
pants in this study. First, despite ongoing attention surrounding
the need for comprehensive sexuality training for individuals
experiencing SCI, we appear to continue to fall short in meeting
these fundamental needs of clients. Second, all essential stake­
holders need to address these deficit areas in the development
of policies and procedures. Such policies might include ongoing
review of educational and transitionary materials for individuals
on a yearly basis. Included in such initiatives are process, impact,
outcome, and summative evaluation processes. Third, with such
enterprises, significant gaps in service provision, as well oppor­
tunities for individuals with SCI to express their experiences sur­
rounding their sexual education and training.
CONCLUSION
Within this qualitative study, we explored the lived experiences
of seven individuals experiencing SCI and their subsequent nav­
igation of sexuality and sexual expression post-SCI. Three major
themes emerged in terms of life transitions associated to sexu­
ality and SCI: (a) initial recovery—the journey begins, (b) post-
recovery—the journey continues, and (c) perceptions of soci­
ety. While the findings of this study are consistent with many
areas of the current literature in human sexuality and disability,
we believe that the results of this study offer insights in advanc­
ing discourses in clinical practice and research in our support
individuals in their exploration and expression of sexuality post-
SCI. We believe that there are systematic barriers that continue
to limit the overall transitionary journeys of individuals experi­
encing SCI. Further, we invite allied health professionals to name
and challenge such barriers and challenge discourses surround­
ing ableism in society as a whole. This article has presented the
experiences of our participants navigating sexuality post-SCI.
It is imperative that their stories and recommendations play a
fundamental role in advancing conversations and action towards
positive change for those living with SCI.
ORCID iDs
Makrina Morozowski https://orchid.org/0000-0001-5946-1061
Robert A. Roughley https://orchid.org/0000-0002-1135-7975
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