Heather A. Fritz, Heather Dillaway, Cathy L. Lysack; “Don’t Think Paralysis Takes Away Your Womanhood”: Sexual Intimacy After Spinal Cord Injury. Am J Occup Ther 2015;69(2):6902260030. https://doi.org/10.5014/ajot.2015.015040
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© 2021 American Occupational Therapy Association
Sexuality and intimacy are important components of health and well-being. Issues surrounding sexuality and intimacy are equally important for men and women living with physical disabilities, including spinal cord injury (SCI). Yet, women’s sexuality after SCI remains largely unexamined. This article presents the findings from an in-depth qualitative investigation of the sexual and reproductive health experiences of 20 women with SCI in or around Detroit, MI. Findings echo existing literature documenting the sexual consequences of life after SCI and suggest new areas of inquiry important for better addressing sexual concerns across the lifespan. Specifically, findings suggest a need to consider the variable effects of SCI on sexual intimacy in relation to a person’s developmental trajectory, the appropriate timing of sexual education, the need to expand conceptualizations of sexual intimacy, and the ways SCI may affect sexuality in later life.
Don’t think paralysis takes away your womanhood because you don’t feel sex anymore; it doesn’t. First of all, you’re a woman, you’re pretty, and you’re able. The point is to have the self-confidence to realize that you haven’t changed so much, other than your paralysis.
It was 8 years later before [I had sex again], and I really wrestled with that. It wasn’t because I didn’t want to. It was because I didn’t think a guy would be interested in having sex with me, and then I was dealing with complications like bladder management problems. When you’re engaging in something like that and your bladder just lets out, or your bowels, you know, it’s embarrassing! And that happened even during the course of my sexual activity, and that was very painful.
Well, at this point in my life, it isn’t just the, you know, the [sex]; it’s also an emotional thing. It’s a common response for women with spinal cord injury. It’s just wanting to be intimate, you know, holding hands, being held—it’s that kind of thing. I think that’s where I am at this point—it’s not just the act itself.
Right off the bat, my O-B G-Y-N doctor . . . would bring up the sexual talk. He would say, “You know, there are other means of satisfaction . . . if you ever want to talk to kind of get a man’s perspective. I know those things [about how] to satisfy your husband and all this other stuff.” Yeah, well, women, I think, are always more “kissy” anyways . . . they always want to be more affectionate [and have] more “romance.”
I know one of my greatest concerns right after my injury wasn’t so much about walking but whether I could be a mother or not. And I think that would be another interesting study. . . . I remember asking the doctor, “Can I still have children?” To me, that was far more important than being able to get back on my legs.
I thought I’d never have a relationship again. I thought I’d never have sex again. And finding somebody who is sensitive enough to be there for the need is a challenge. And you have to have enough confidence to allow yourself to go there, too, so I have to be all right with me in order for people to be all right with me. You know, ’cause the shock value when they see you, it’s like, “Oooh . . . myyy . . . God, she’s so pitiful,” you know?
You develop ways, I mean . . . it takes a while ’cause you gotta talk about it . . . and make sure they’re OK with it. You know, because when people see, especially guys, guys are visual, so they see you, they are curious. They think you’re pretty, you know, thank you. So I talk, you know? And I talk and I talk because I have to develop a level of confidence with what’s happened to me. I can talk and we can be friends, but once it’s time to get serious, then a wall goes up a little bit, ’cause it’s like, What does he want, where is he coming from, what does he want?
I think the hardest thing that I’ve had to come to grips with is that people look at me as an asexual being. . . . I just think it’s a common response to women with disabilities. For example, you and I could be walking down the street and my kid is with me, and they’ll probably think that my kid is your kid, you know, ’cause they think, “How could she have sex?” It’s implied.
I think that’s a huge problem in our culture . . . the lack of touch, the lack of hugging . . . even if it’s not just with a partner but just in general [with family and children]. But that emotional deprivation is a problem because of the lack of touch, the lack of feel . . . not just among women but among men [with SCI] as well. . . . I think that’s something that really needs to be dealt with. I know we’ve got surveys on dealing with sexual intimacy, but what about that touch? It doesn’t have to be sexual . . . but it’s physical intimacy. I think it’s a great lack among people with spinal cord injury or even just those with disabilities.
Occupational therapy practitioners can develop sexual education programs that are tailored to the client’s life stage–specific sexual desires and goals.
Occupational therapy scholars and practitioners can incorporate strategies into sexual education programs to increase sexual self-confidence and relationship-building skills.
Occupational therapy practitioners (including faculty, staff, and students) can engage in reflective dialogue and advocacy for addressing the unique sexual concerns of underrepresented populations in the literature such as women and gay, lesbian, and transgendered people with severe physical disabilities.
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