Literature and Medicine II

Gendered Disability ‘Performance’

31 Each bodily and social performance is shaped by, and even confined to, the cultural values, norms and expectations of the particular situation. Such gender expectations have significant consequences for the bodily performance of persons with a hidden disability. Women with disabilities are expected to maintain a dramaturgical performance that embodies vulnerability, inferiority, and dependence (Asch and Fine). While these societal notions stand in stark contrast to ideals of masculinity, they epitomize femininity (Garland-Thomson). Women are supposed to be submissive, sensitive, romantically appealing, and dependent, while appearing healthy, due to the social value placed on their bodily appearance and nurturing role (Abrams; Asch and Fine; Johnston and Sinclair; Vickers). Understanding the pervading emphasis on exterior appearance and beauty and on the importance of the ability to disguise bodily limitations will allow insight into why women may be likely to conceal a hidden disability (Stone).

32 The long-standing feminist movement against a patriarchal society rages against women being taught that their individual worth is based on how closely and how favorably their bodily appearance comes to desirable objects (Mairs; Stone). While standards for appearance significantly affect women, ironically it is the stereotype of femininity that allows for certain coping mechanisms for women with a hidden disability. There is more societal acceptance for them to access the resources necessary to adapt to their conditions. Therefore, they show greater resiliency (Charmaz). Angela describes how being female and knowing that society accepts her dependence upon others allows her to request the help she needs:

I would prefer not to have seizures by myself, and (with epilepsy) you have to depend on someone. Someone has to help me. It’s scary to have a seizure by myself. Because usually when I have a seizure they have to turn me on my side. So if I had it by myself, who’s going to turn me on my side? I’m going to choke on my throw up or my blood and I might suffocate. It bothers me that I have to be dependent, but it doesn’t bother me asking for help when I need it. I could see a guy being more embarrassed to ask for help and to be like, “I’m epileptic.”

33 Women are socialized into developing a high level of understanding of the intricacies of human relationships (Abrams; Greenhalgh). They tend to place more importance on social interaction with others, and they seek out the opportunity to lean on and learn from others when coping with life’s hardships (Abrams; Petronio, Martin, and Littlefield). Rosalina believes this is the cause for the gender discrepancy in her support group:

It seems to me the guys have a lot more trouble staying on (the diet) than girls. Even our support groups are maybe seventy-five percent women. I think it’s because it’s a lot easier for women to bond and talk about ways they’ve found to make a bread that comes out lighter and exchange recipes. It becomes a therapeutical woman’s world type of thing, of how to make gluten-free things or order online products and making those and baking those. Men don’t really go out of their way to learn how to make special recipes or share recipes with anyone. That’s been a huge thing of the diet; finding the foods and finding gluten-free things. Men are more, “Leave me my steak and my potatoes and hold the bread.” Also, I think the men consider the women weaker than them, like, about stomach pains or anything that’s wrong. With them, they’ll get sick, but they’re not going to be telling anyone else about it—they’re just going to try to keep it to themselves. Men don’t want to be admitting weakness. The women are a lot more open with how sick they were and how it affects them.

34 Women’s self-esteem is gained through their connection to others (Abrams). Thus, accessing peer-support contributes to both positive identity development and resilient coping skills. A woman’s success, however, still hinges on her ability to conform to the societal standards of appearance. In today’s society, the dominant ideal for a women’s appearance is to have a body that is as thin as possible. Victoria describes that it was this very preference in the female body that allowed her to escape the social ridicule a male with the same condition faced:

Being thin and being little, because of the arthritis— being skinny isn’t a factor when you’re female, but it’s probably definitely a factor when you’re male … I know a kid that gets beat up because he is so small because arthritis stunts your growth. They see him, and they put him in the lockers. They beat him up and he has to deal with a whole other set of challenges that I would never have thought of. So he left school early and got his GED because he couldn’t deal with all the ridicule.

35 Women with unapparent conditions may find themselves suspended between their day-to-day experiences and the ideals of feminism (Sherr Klein). Some aspects of patriarchy benefit their daily coping; other aspects remain oppressive. Displaying less than perfect elegance, poise, and bodily integrity, women with disabilities are frequently rejected by both mainstream patriarchy and the feminist movement (Asch and Fine). Feminism is preoccupied with projecting an image of autonomy, strength, and competence; an image that women with disabilities do not embody. Meanwhile, other ‘feminine’ roles, like motherhood, are called into question for women with disabilities (Sheldon). Powerful economic, social, and cultural forces reduce the autonomy of women with visible and hidden disabilities of all forms to become mothers and for women to give birth to a baby with a disability (Sherry). Victoria describes such a confrontation:

I told one guy (about my condition), and he told me I shouldn’t reproduce. I was in high school. “You shouldn’t reproduce,” he said. He was a friend. And I was just like, “Really?” Now it bothers me. I feel like calling him and telling him what I think. But then I was just like, “Hmm.”