I met my husband in a sports bar after a long day of doing research with the Kessler Institute in New Jersey. I remember how his “wingmen” desperately tried to save him from being stuck with the girl in the chair: “Hey man, your ride is leaving, you got to go.” He stayed, and 17 years later we are still together, but I am haunted by his friends’ need to protect him from the “undesirable.” It is hard for the average person to believe that this handsome, athletic, nondisabled guy would find someone with a disability desirable.
What makes someone desirable? How do we define attractiveness or beauty? Feminists claim it is a social construct reinforced by cultural expectations, while evolutionists claim that beauty is determined by specific universal traits that signify biological superiority. Either way, women with disabilities get the short end of the stick.
The social-constructivist view supports the notion that a woman’s attractiveness is measured by her ability to live up to modern iconic images of beauty — a thin, leggy, ample-busted figure with large eyes and full lips. These media-manufactured images vary from decade to decade, but rarely have they included women with disabilities. Seldom do we see a woman with a disability portrayed as a mother, wife, lover or successful businesswoman. And when we do get a glimpse, it is usually a distorted misconception that casts women with disabilities as either super-human, childlike, or angry, bitter creatures with no hope for love.
Take John Sayle’s interpretation of a woman’s life with a disability in his acclaimed film, Passion Fish. The main character, soap actress May-Alice Culhane, is paralyzed from the waist down in an accident and spends the entire film trying to come to terms with her disability. Throughout the film, Culhane is angry and bitter; she deems herself damaged and therefore unacceptable as a romantic partner. When she begins to enjoy the increasing attentions of a married handyman, she responds to his wife’s lack of concern over their friendship with a cryptic, “Why worry about some cripple who’s got a freezer compartment for a pussy.”
Although attractiveness and body image are not just about sex, the ability to be seen as a potential partner does impact the way a woman feels about her body.
Janette Knudson, an intelligent woman with long golden locks, a bright smile and a cute British accent, fits much of the criteria of a socially constructed beauty, except for the fact that a spinal cord injury left her with limited use of her hands and a motorized chair for mobility. Knudson, who just graduated from California State University Northridge, feels that disability does make a difference.
“Now, don’t think for a minute that I am a wallflower or shut-in. I am active in the community, I work, go to concerts, socialize with many different groups of friends, work associates, etc. I am out there enjoying the world. But the men in the world are missing out on me. I sustained my SCI in 1992 and I have not had a man ask me out in 15 years. I really don’t think that would be the case if I didn’t have a disability. In fact, I never, ever was not in a relationship before my injury.”
K.R., from Torrance, Calif., is five years post SCI and uses a manual wheelchair for mobility. She is proud of her ability to be a mother, a wife and a successful speaker, but also fights daily frustration. “I don’t feel like a complete, whole woman many times, because I can’t feel most of my body, which affects intimacy. I don’t feel as complete because paralysis limits so many of the active things I did before, so I have an antagonistic relationship with my body many times.”
K.R. believes that disability takes its toll, and if she were not already married, it would be even harder. And it doesn’t necessarily get easier over the years. Nancy Kennedy of Los Angeles has quadriplegia from an SCI over 25 years ago. She is active, attractive and involved, but often feels that her disability is perceived as a negative by potential dates.
Beauty and Biology
Luda Gogolushko, a 23-year-old college student with spinal muscular atrophy from birth, doesn’t know if her disability will make it harder to find a partner because it is not her focus at the time. “I do not really have the full experience of looking for a partner, because my main focus at the moment is career, health, friends and school. But when I do start looking for a relationship, it’s important to focus on who the person is on the inside, and if he holds something against me because of my disability, then he is not worth my time.”
But is feeling attractive all about attracting a partner? Each woman interviewed discussed positive feelings about their bodies and their lives. Gogolushko could walk until she was about 10 years old and began using a motorized chair when she was 14. Throughout her life she has had moments when she missed being able to run through the sprinklers, jump in a bounce house, or twirl in a dress, but she has always been grateful for the abilities that she does have. “I was on the Sacramento synchronized swim team between 10-15 years old and loved it. Last semester I took a ropes course class and flew down the zipline, and a survival class that involved a three-day camping trip. I’ve been on jet skis, boats, and gone fishing. Everything is a process. The struggles and growth we go through are something we have to do to teach ourselves certain things. I am grateful for all the experiences I’ve had because I have learned, changed and grown in so many ways.”
All but one of the women I spoke to indicated that they would not change their situation. All felt that their experiences with society and their bodies were essential to who they are as women.
K.R. thought a “body swap” with a nondisabled person was an intriguing idea, but at the same time she realized, “This is my life now, and even though sometimes it’s easy to say, ‘Things would be so much better if …’ I think there is a reason I am in this situation, too.”
Even though everyone appreciated and celebrated their lives, each woman felt that being perceived as attractive by their partner or potential partner was an important part of their body image and sense of sexuality. That feeling is a universal concern. “I defy anyone to point to a society, any time in history or any place in the world, that wasn’t preoccupied with beauty,” says Nancy Etcoff, a neuroscientist who is studying human attraction at the MIT Media Lab.
Even the animal kingdom abides by the laws of attractiveness. According to University of New Mexico ecologist Randy Thornhill, “Throughout the animal world, attractiveness certifies biological quality.” Female penguins want chubby mates that can withstand the long winter, and scorpion flies want a male with symmetrical wings because well-matched wings mean they are better at getting their prey and defending themselves. Most animals are driven to seek out partners with physical attributes that signify the superior genetic traits needed to optimize survival. And the human animal, from the scientific point of view, is not much different.
But in many ways, humans are a very different kind of animal.
The underlying evolutionary preferences women with disabilities face create dual discrimination when it comes to body image. Not only are we subject to the same unrealistic expectations of beauty that all women face, we are also oppressed by our society’s failure to see us as having the innate attributes associated with evolutionary superiority — or the ability to fulfill the traditional roles of women.
Gogolushko, who has lived with her disability from birth and has defied so many role expectations, still struggles with the social expectation to do things in a traditional fashion. Her biggest frustration is with dancing. “I love dance. I have gotten more comfortable when I go out with friends, but I also have a fear of running over everyone’s feet. There are times that I wish my muscles were stronger; I miss not having the strength to use my body to dance the way I want to.”
The Deeper Self
Every woman I interviewed, including myself, indicated that there were certain areas of our bodies that did not function the way we wished. Bladder issues, lack of sensation and inability to get our bodies to move with ease were all sources of frustration, along with the discomfort we had with the lack of muscle tone in our midsection. But most nondisabled women I know struggle with their bodies and are concerned with the belly bulge. The good news is that body image dissatisfaction can be dealt with. Knudson takes this approach: “I tend to focus on what I do like — my hair, my breasts, my smile and my love of life.”
Gogolushko reminds us that “life is what you make it — what you put into it is what you are going to get out of it.” Right now she may not be able to dance the way she wishes, but she is trying to be comfortable dancing in a wheelchair, and it is a work-in-progress. “It is super fun to go out with friends, because with the right crowd, I do not have to care about my disability. It is important to be grateful for what I have and to focus on the heart of every person, because there is so much more on a deeper level that is more beautiful than the eye can see.”
K.R. sums it up best: “I think most every woman, disabled or not, has issues with their body image. I did before I was hurt, too. You have to feel comfortable with yourself and do what you can to keep your body healthy and fit, and that will help you feel better physically and mentally.”
Even Geoffrey Crowley agrees. “Our beauty-lust is often better suited to the Stone Age than to the Information Age; the qualities we find alluring may be powerful emblems of health, fertility and resistance to disease, but they say nothing about people’s moral worth.”