Sitting Pretty: The View from My Ordinary Resilient Disabled Body

Taussig describes her family background and how she was diagnosed and treated for cancer when she was 14 months old; she became paralyzed from the waist down when she was three. Her family didn’t modify their house for accessibility because “growing up in the Taussig family meant no wallowing, no time for grieving, and definitely no whining” (2). She did not use a wheelchair for several years and even slept in the top bunk of a bunk bed, on the top floor of the house. Taussig learned to adapt and would crawl to the neighbor’s house, which she didn’t see as different or unusual: “During this window of crawling in the mud and scrambling up to my top bunk, I believed I was royally beautiful, valuable, and fully capable of contributing to the group” (3).

Taussig had not yet realized she didn’t “fit in” with other children, but once she started school, she recognized her difference and viewed herself as a “burden.” She ended friendships when she noticed any additional demands on them. She started to see herself as “ugly,” partly because of the lack of media representation of girls and women dealing with paralysis: She realized she “was not among those who would be needed, admired, wanted, loved, dated, or married” (5). This lack of representation also made Taussig view herself as fragile and powerless, and she didn’t see herself ever getting a job or contributing to society.

Taussig’s brother once asked about her writing, and when she told him that she focused on disability and shame, he was surprised that she felt shame. Again, this shame came from viewing her body as a “burden.” She didn’t face abuse or bullying as a child, having grown up with the privileges of a middle-class, white household, and because people were generally kind to children with disabilities. Rather, Taussig’s shame stemmed from ableism. She expands on the standard definition of ableism, which juxtaposes people with and without disabilities. This definition ignores the complexity of bodies and the variety of disabilities and abilities. The Oxford English Dictionary describes ableism as “discrimination in favour of able-bodied people” (8). Taussig’s definition is “the process of favoring, fetishizing, and building the world around a mostly imagined, idealized body while discriminating against those bodies perceived to move, see, hear, process, operate, look, or need differently from that vision” (10). She emphasizes context when understanding disability and how people can sometimes have a disability when they break a bone, get sick, or become old—which all create impairments. She calls “able bodies” a “fiction” because ableism impacts everyone, viewing it as an unquestioned, fully supported system of oppression. In it, there is a preferred body type, and those who don’t adhere to it and need assistance are considered a “burden.” Taussig compares disability to other bodily problems like weight gain and changing skin and frames the “ideal” body as fit, young, and independent (11-12). She tries to pass as fully able because of ableism and feels like an outsider because of the inaccessibility in the world.

Ableism mirrors issues like racism, sexism, ageism, and anti-gay bias, systems that people don’t necessarily recognize because they have existed for so long: “They distort our sense of self, keep us quiet, and make us feel both small and like we’re an enormous problem, both invisible and put on display, both a spectacle and swept under the rug” (14). These systems work together to create shame, especially when one is marginalized in one or more respects. While Taussig has a disability, she acknowledges her own privilege as a white, cis-gendered, straight woman. In considering ableism, she discusses a 2017 Cornell University study that found people with disabilities have lower income and employment rates than people without disabilities. She emphasizes assumptions about people with disabilities, namely that they would prefer not to have their disabilities. Overall, Taussig hopes people with disabilities will be able to live without shame in a more inclusive world.

Taussig once read a Reddit thread by a woman who wondered whether or not people would date someone who uses a wheelchair because she had not dated since she began using one. The responses varied, but one woman gave supportive replies to everyone else, no matter what their responses were. Seeing the woman’s placation made Taussig realize her own ways of putting everyone else first by reassuring them about disability, which she views as part of the responsibility society puts on people with disabilities: They are supposed to put others “at ease.” In the context of the Reddit thread, people with disabilities often feel the need to make a potential date feel at ease with their own needs.

During childhood, Taussig learned from movies and her parents’ marriage that love is important and relies on attraction. As a child, she felt beautiful even though she didn’t have society’s ideal body—thus, she felt attractive. This feeling slowly disappeared over many years. When Taussig viewed a video of an old trip to Lake Michigan, she realized her appearance conflicted with how she felt at the time, so she began to cut out her lower body in pictures: “If I never saw it, I could pretend it didn’t exist” (27). In her youth, she tried to imagine intimacy with a man and the practicalities of being in a wheelchair. Because she had never seen representation of this in media, she couldn’t imagine it. Taussig began to internalize the idea that she didn’t deserve a relationship because she had a disability, even imagining herself without her disability.

Taussig had a crush on a boy named Sam Wagner when she was eight. They became close, but she doubted he wanted more than friendship. To her surprise, he told her that he was interested in her. They eventually became a couple, but Taussig fixated on how they looked to others. Sam’s friends made rude comments, and women at church told her that she was “lucky.” She started to lose affection for him but felt like he was her only chance at a relationship, so they got married when they were 22.

For her wedding, Taussig was determined to walk down the aisle and hired a physical therapist to help her use a walker. She notes the many YouTube videos of brides with paralysis walking down the aisle at their weddings and how they fit societal ideas of disability and “triumph-over-adversity” but also support the image of brides as symbols of perfection, beauty, and “the promise of the beginning of life” (34). By contrast, she believed wheelchairs symbolized “disease” and “old age.” Taussig did walk down the aisle at her wedding but didn’t feel like herself: “I just remember feeling detached from myself, out of my body, watching the scene from above. Just like a movie, I wasn’t actually there” (36).

Taussig and Sam divorced a few years later, as she realized she married him because of her fear and need for security. She learned being alone was better than being with the wrong person and found happiness in solitude. When she later created an online dating profile, she agonized over what to include about her disability. Taussig dated some men who were clueless about disability and others who simply weren’t compatible. She felt she didn’t fit into the dating world and wondered if her disability impacted her perspective. For the moment, she decided she probably wouldn’t find love again but accepted it.

However, Taussig then met Micah, who seemed interested and asked a thoughtful question about her disability: how it impacted her and her empathy. They dated and navigated their differences, finding their own type of relationship: “We created our own currency, our own intimacies, our personalized displays of affection. From scratch, we imagined our love to life” (44). At a work party, Micah’s coworkers complimented him for dating Taussig, and she felt insulted. She realized that even with her confidence, others could affect her self-esteem. However, she realized people are to blame for their own ignorance and insensitivity, not her for simply existing. When Taussig and Micah discussed marriage, her disability helped her recognize issues with stereotypical weddings and marriages, and she no longer wanted a traditional wedding. They instead had a small ceremony without an aisle.

Taussig just finished her graduate studies with a dissertation on disability studies and creative nonfiction and thought education could help change preconceptions of disability. As an English teacher, she created a related course for high school seniors: “Cripples, Freaks, and Invalids: The Marginalized Body as Seen in the Stories We Tell.” In the class, she explained the difference between the medical and social models of disability—how one views disability from the perspective of bodily defects and the other emphasizes the experiences and environments of disability (54). Taussig then explained the difference between disability and impairment but sensed the students didn’t understand—that they saw her disability as a problem. She, too, sometimes saw it as something she wanted to change, particularly the associated pain. However, the main problem to address is not her disability or its pain but “stigma, isolation, erasure, misunderstanding, skepticism, and ubiquitous inaccessibility” as per the social model (57).

Because Taussig assumed the younger generation was more open-minded about identity, she was surprised by her students’ view of disability as a “defect.” She later realized she had high expectations because she was sharing academic ideas with teenagers, concepts that many adults fail to understand. Thus, she tried incorporating books, movies, and her own life into the class. One such book was Andrew Solomon’s Far from the Tree. After spending time in the Deaf community, Solomon stopped seeing deafness as a defect and instead as an identity, similar to his own identity as a gay man. When a student asserted “there’s nothing wrong with” being gay, Taussig pointed out that this statement assumes “there is something inherently wrong with being disabled” (62). She described how the world had become more accepting of gay people, but the same logic did not apply to people with disabilities. Even after this discussion, the students still viewed people with disabilities as “defective,” so she asked whether or not disability can exist as something other than a defect—perhaps as an identity, even if it’s not viewed as marginalized. Frustrated, Taussig ended the discussion and wondered, “I’m trying to find the perfect combinations of words to unlock the code. I’m not sure there were any magic phrases that could break all the way through the intricate and constantly reinforced narrative of ableism” (64).

As the class continued, Taussig found that the students remained resolute in their views, with a few moments of comprehension. When one student, Adam, told her that the class did not matter to him, she saw how his privilege created this mindset. He told her that he cared about discussions about women because they were in his life but people with disabilities weren’t. By contrast, another student told Taussig that the students were sheltered and needed discussions about topics like disability. Taussig realized she was teaching concepts that had become important to her during her graduate studies, which caused her to feel vulnerable. As a graduate student, she read an article called “Disability, the Missing Term in the Race, Class, Gender Triad” by Lennard Davis, which taught her the social model of disability and that disability is an issue that impacts everyone. In the article, Davis argues the negative reaction to “disability is learned” (72). Taussig had lived with the medical model of disability in mind and, in Davis, finally found a way to truly understand herself.

When Taussig tried to teach the medical model of disability, she hadn’t realized how much her “personal scars,” her desire to “fix” herself, overlapped with these ideas: “[F]or me, the medical model wasn’t just a theoretical ideology. I’d absorbed it into my own body. I’d believed it more than anyone” (74). This caused her to reconsider teaching the class again. However, she grew from the first class and thought some of the students did too. When Taussig taught the class again, she focused on self-care and broadened the curriculum to incorporate gender-nonconforming, overweight, and other bodies, as well as assumptions about fixing them. She initially faced similar pushback as the first class, but then several students shared experiences in relation to their bodies. She decided not to teach the class again for a while but added discussion of the medical and social models of disability to a ninth-grade class, which ended up resonating with one student.