Don't Call Me Inspirational is a frank, forthright, and insightful memoir by the feminist disability activist, painter, psychotherapist, and former New York City Human Rights Commissioner Harilyn Rousso. From her perspective as a lifelong New Yorker born in the late 1940s, Rousso explores sexuality and other aspects of embodiment, critiques normalcy as a useful or valid standard, and suggests how identity construction through narrative is a collective project, rather than a solipsistic one. An interesting thread involving food, cooking, and restaurants emerges as well. Rousso envisions the book "as a collage or series of images about [her] life rather than a formal portrait" (x). The memoir unfolds as a series of essays organized in thematic clusters: encountering the ableist public, seeking independence and leaving home, coming to terms with her appearance and bodily comportment, her own womanhood, and "coming out" as disabled.

The memoir can productively be read as an exploration of identity construction through narrative. Early in the book, when Rousso's mother is about to give birth, nurses insist that she must wait until the doctor arrives, and they hold her legs together despite Mrs. Rousso's protests and efforts to elude their grasp. In the months that follow, she believes her infant daughter is experiencing developmental delays, a perception denied by a series of doctors, until at age three Rousso is diagnosed with cerebral palsy caused by oxygen deprivation when the nurses delayed her delivery.

In the oft-retold "family legend" that is also Rousso's adult perspective, the story revolves around her own "determination to be born and claim [her] place in the world," and her will to "wait for no man" (13). Family legend also framed the birth as her mother's emergence as a fierce advocate for her daughter, to the point of "biting and scratching" the nurses who interfered with her daughter's delivery (14). This assessment of events is a far cry from more typical understandings of the birth of a disabled child, or the disabling of an infant during the birth process, which is often presented as a tragic blow to all concerned. Rousso instead frames mother and infant as exercising agency.

Rousso and her family's early and ongoing legend-making sets a tone for later experiences with feminist consciousness-raising and disability groups where experiences and identities are framed in ways that afford the author and her peers a sense of agency, self-worth, and collective pride as disabled people and women. This is no facile, feel-good celebration; the fighter image of herself presented by her family and her activist peers is one that Rousso calls a "difficult legacy" (14)—while making it clear that life might not be livable without this sense of her role and identity.

The book's searching interrogations of normalcy exhibit a queer crip sensibility. As disability performance scholar Carrie Sandahl suggests, practices such as "claiming…crip and queer identities" and "the public display of sexualized bodily difference" can be sites of "theoretical and activist intervention" and "bea[r] witness to past and present injustice" (28). The desires and sexual encounters that Rousso writes of focus exclusively on men, yet depart from normate sex and relish alternative visions and practices. In her nuanced discussion of the lived experience of non-normate bodily movement and coordination, she acknowledges times when the gaze of nondisabled people or internalized disability shame undermine her self-confidence; yet, she learns to cherish the ways her body departs from cultural norms.

The book's queer-cripness is particularly evident in its telling of the erotics of hand tremors. Rousso takes care to note "the advantages…of having a wandering right hand (it can be very useful in sexual activities)" (11). In "Daring Digits," a piece in which her "wandering" right hand becomes a character with "a mind of its own," she writes of a lover who "insisted upon holding my right hand wherever we went…My hand became more outspoken, eager for his touch….And then my hand discovered a new talent as vibrator, as lovemaker. My hand and I will never forget the look of ecstasy in that boy's eyes" (99). The memoir's "public display of sexualized bodily difference" eloquently "bear[s] witness to past and present injustice" (Sandahl 28), such as the years of her parents', friends', and others' matter-of-fact denial of her sexual identity, leaving wounds that would take still more years to heal. A queer crip sensibility is reflected as well in the book's numerous references, particularly in the latter half, to "coming out" as disabled. For Rousso, this is a lifelong process that involves bidding farewell to a fantasized "nondisabled self" (206) and praising her "disabled self" (208), an act made possible, meaningful, and desirable by her participation in the disability movement (5).

Rousso also resoundingly critiques normalcy as a standard for embodiment more generally: in others' efforts to get her to "walk straight" (79) or speak "clearly"; their preference for how her face looks without the involuntary "grimace" it sometimes makes; strangers' treatment of her as not "quite human enough to understand" (46); and her own internalized shame about her "wandering" hand. She demonstrates that strategies such as the eroticization and the aestheticizing afforded by painting (104) allow new and affirming relationships to one's body. The younger Rousso feared that she was defective as a person because of her bodily differences, but the disability movement taught her a way to "be disabled and 'normal,' if I am foolish enough to set my sights so low" (55).

In recent years food has emerged as an area of interest in disability studies, including a Disability Studies Quarterly special issue devoted to the theme (Gerber). Readers interested in the intersection of disability and food studies will find many interesting moments here. Food and eating in the narrative represent a social domain of normalization and of differential access to participation in the life of society (and clearly situate the author in a particular place and time). Rousso never learned cooking from her mother, who cooked only because of her husband's expectation she do so, a responsibility that sometimes conflicted with her volunteer commitments and life outside the home (35). When her mother asked Rousso to cook once when she was out, Rousso's attempts were less than successful, and her mother never repeated the request or taught her to cook, which Rousso attributed to her own disability. Despite her mother's ambivalence about cooking and her example of a life not limited to the domestic realm, Rousso internalized a sense that she must cook well to be "a real woman"; not having "mastered" cooking undermined her self-image (36).

Later, however, Rousso learns that her sister felt that she herself had been asked to cook for the family because Rousso was regarded as the smart one, above such work. Here we see the sensitivity of Rousso's narrative to seemingly distinct social forces, converging in the family's kitchen: her mother's participation in the broader world was more challenging due to social definitions of women as cooks/caretakers; Rousso's inexperience with cooking took on the symbolic resonance of disability as failed womanhood; and her sister could take no satisfaction in her relative facility with foodmaking because it was socially devalued, not for "smart" people like Rousso.

The book also illustrates the symbolic, socially-charged nature of food outside the home for disabled people. After leaving home for college, Rousso struggles with the logistics of managing a food tray yet refuses to ask for help, even sitting apart from others, intent on not drawing attention to herself and her disability (49). Over the years she becomes engaged in disability activism, in the process acquiring a positive consciousness of herself as disabled. She learns—and demonstrates—that independence and dependence surely coexist in life, "that I can depend on others to meet my disability, aging, or just plain human needs and still maintain my own independence by directing my own care" (55). This recognition is illustrated when she orders a glass of chardonnay, specifying how to present it so that she can avoid spills, and to bring it to her at the "table where that handsome stranger is sitting" (55)—marking her place in the convivial life of society.

Food practices as a domain of societal dynamics are also illustrated when Rousso's feminist disability activism leads her to create the Networking Project for Disabled Women and Girls (later to become a national model). Its girls' program includes group discussions, workshops, activities, and eventually one-on-one mentoring (including visits to the mentor's home and workplace), demonstrating what disabled women can do in the public world and the more general possibility of meaningful options in life. Due to the girls' lack of access to being out in the world, especially with peers, they particularly value aspects of the program that Rousso hadn't anticipated would be as significant as they were, such as snack time after group discussions (195) and going out to eat in restaurants together (201). The girls also relished the chance to cook and eat a meal together as a group in a staff member's apartment, an activity that "offered…confirmation of their capacity to take care of themselves on their own" (201). This activity reframed the act of cooking—which in their own homes could have multiple associations with confinement—as a collective project of self-determination and mutual support.

At one point in her disability advocacy efforts in the women's movement, Rousso speaks of "struggling between and straddling the disabled and nondisabled worlds" (171). This comment reflects the double consciousness so well documented among oppressed groups, and compounded for those experiencing multiple vectors of oppression. At a series of feminist events and a federally sponsored medical conference on disabled women, Rousso's contributions and those of other disabled women meet with a resounding lack of attention and action (160, 163, 171, 176-77). Such experiences, along with personal interactions with a range of "nondisabled" individuals, inform Rousso's sense of a sharp disabled/nondisabled divide. Rousso does identify one commonality for women across this divide. In her 1960s feminist consciousness-raising group, she learns that "many nondisabled women also felt defective" as she did at the time (53), and confronts the same phenomenon years later leading a workshop on body image (85-86). Generally, however, Rousso presents "disabled" and "nondisabled" as not only distinct but readily perceivable categories constituting a seemingly absolute and impermeable dichotomy. Yet disability is not always visible or readily perceivable, and since states of impairment or disability can fluctuate and vary, membership in "the disabled world" is not necessarily as clear-cut as the book sometimes indicates. In this respect, Rousso's highly insightful work could use more nuance.

Overall, the book advances disability activist and scholarly investigations of embodiment, sexuality, and what it means to "claim disability" personally and collectively (the theme of the final section of the book). It is also an invaluable asset to the archives of feminist disability activism (New York-based, but at least national in its scope) from the mid-20th century to the present. Much of the "talking back" alluded to in the title is talking back to nondisabled feminists; Rousso and her disabled feminist comrades raise incisive critiques of the mainstream women's movement, a considerable contribution/intervention to the records of second- and third-wave feminism. Her writing is simultaneously bold, insightful, and humorous in confronting her own vulnerabilities, insecurities, human failings, and internalized ableism, while using them to map underlying social injustices and the collective remedies needed. The book also deserves to be taken up by disability theorists interested in food; by scholars in food studies (a field where interest in intersectionality is only emerging); and by narrative theorists, bioethicists, and anyone concerned with "damaged identities" and "narrative repair" (Nelson).

References

  • Gerber, Elaine, ed. Disability Studies Quarterly Theme Issue: Eat, Drink, and Inclusion: The Politics of Disability and Food 27.3 (2007).
  • Nelson, Hilde Lindeman. Damaged Identities, Narrative Repair. Ithaca, Cornell UP: 2001.
  • Sandahl, Carrie. "Queering the Crip or Cripping the Queer?" GLQ: A Journal of Gay and Lesbian Studies 9.1-2 (2003): 25-56.
Return to Top of Page


Copyright (c) 2014 Abby Wilkerson



Volume 1 through Volume 20, no. 3 of Disability Studies Quarterly is archived on the Knowledge Bank site; Volume 20, no. 4 through the present can be found on this site under Archives.

Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact libkbhelp@lists.osu.edu.

ISSN: 2159-8371 (Online); 1041-5718 (Print)