DSQ Senior Scholar essay

Virginia Woolf is probably our greatest modernist writer and our most creative feminist thinker. In Woolf's 1928 collection of feminist essays, A Room of One's Own she, invents a character she calls Judith Shakespeare, the imaginary sister of the famous playwright, who is equally creative and ambitious as her brother.1 In her amusing, but instructive essay, Woolf uses the figure of Judith Shakespeare to show the social constrictions women who wanted to write faced. Woolf invents Judith, who as Woolf has it, must stay home to care for the family while her ambitious brother Will goes off to school and then to London to try his hand at theater, and the rest is history for him. Dutifully, Judith obeys until her father plans to marry her to an odious neighbor. When she refuses, he beats her, and she runs away to the London stage door to offer her talents, where they are rejected. She becomes pregnant by a charming fellow actor she meets that first day. Disgraced, Judith dies alone in childbirth and is buried in an unmarked grave.

I'll offer here another figure to think through the social constrictions facing disabled women. Following Woolf, my heroine will be Judith as well. But this is not Judith Shakespeare; rather this is Judith... Roosevelt, the younger sister of Franklin Delano Roosevelt. Whereas Franklin used a wheelchair, except when he was literally held up by braces, props, or his aides, Judith — let's say — was born with cerebral palsy, so that she uses a wheelchair, has an unusual speech pattern, and often is affected with involuntary movement. Judith is very ambitious, charismatic, and has inherited the family talent for leadership. She has a learning disability along with strong academic skills.

My purpose in inventing Judith Roosevelt — actually there will be two Judiths in my version — is to present a picture of both the limitations and the possibilities facing people with disabilities in higher education. My story suggests, I hope, how institutionalizing and including disability as a subject of inquiry into humanities studies might more fully integrate disabled people into higher education and show the significances of disability to all people.

Now back to Judith. Encouraged and loved by the Roosevelt family, and with FDR as a model of what disabled people can do in life, our ambitious Judith decides to enter higher education, even though she has never attended school but has been tutored at home. The year is 1925, and since she is a girl, Judith is, of course, excluded from the prestigious colleges where leaders are created, such as the one her brother attended. Now, Woolf calls her fictional bastion of male privilege Oxbridge, so I'll call mine Yarvard. Even though she cannot attend Yarvard because she is a woman, Judith cheerfully applies for admission at, let's call it, Smithcliff, a prestigious women's college. She is denied admission on the grounds that the dorms and classrooms can't accommodate wheelchairs, that her speech pattern would interfere with her elocution lessons, and that her presence would upset the other students. There is also the suggestion that she is not good marriage material for the men at the elite college to which Smithcliff is a bride-supplying "sister school." The letter inquires as to why she hasn't been institutionalized. When she goes to the administration building to protest the decision, she can't get up the flight of marble steps on the Greek Revival building. This edifice was designed to evoke a connection to the Classical world, which practiced infanticide of disabled newborns. Somewhat discouraged, Judith decides to try her talents and ambition in the work world by seeking a job. She resolves to fulfill the American Dream by starting at the bottom of a big company and working her way up to be its president. Soon she is hired as a clerk in the lingerie department of a famous and fancy department store — let's call it Bloominglords — by a progressive young manager who sees her potential. The lingerie department is the only one that she can reach in her wheelchair. Nevertheless, she is fired the next day because of complaints that a woman who is so obviously not sexually attractive selling alluring nightgowns makes customers uncomfortable. Daunted by her dismissal, she seeks consolation in the arms of the young manager and soon finds herself pregnant. Upon learning of this news, he leaves her for a nondisabled woman with a fuller bustline and better homemaking skills in his inaccessible kitchen. Although Judith wants to have her baby, everyone around her is uneasy that she would risk bringing a child with a disability like hers into the world and insists she would be an unfit mother. Despondent and alone, she has a back-alley, illegal abortion and begins to hemorrhage. The doctors at the hospital she is taken to do not recognize her medical condition because they can't imagine a disabled woman might be pregnant. They send her home, where she dies. In shame, her parents announce that her death is a result of her disability, and she is buried quietly in a corner of the family plot — not unlike Judith Shakespeare.

The fates of Judith Shakespeare, the aspiring actor, and Judith Roosevelt, the aspiring disabled woman, are similar if we locate them in the 1920s or earlier, as Woolf and I have so far. I want to extend my story, however, by creating another Judith: a distant cousin of FDR who happens to have the same disabilities and the same ambitions and talent as her predecessor and namesake, the earlier poor Judith Roosevelt.

Our contemporary Judith, however, has a different fate. Born in 1975 to a progressive and privileged family, Judith is not hidden away at home, although she and her family have to struggle constantly for her enter the public realm because it is inaccessible and the social world because of exclusionary attitudes about her disabilities. Nevertheless, a national civil rights initiative of the 1960s spurred the disability rights movement, and legislation such as section 504 of the 1973 Rehabilitation Act mandated that Judith get a public education and a social context reasonably comparable to those of nondisabled students. More important, Judith is ready to enter college in 1992, two years after the landmark civil rights act for disabled people, The American with Disabilities Act, is made law. Judith applies to Yarvard, FDR's alma mater, where women have only been admitted since 1969. On the strength of her teachers' recommendations, strong essays, and a vague understanding on the part of admissions officers that disability is a diversity category. She is accepted. Her standardized test scores are low because of her learning disability, but her plucky attitude comes through in her application. Her strategy, perhaps a wise one, is to avoid an interview. Judith is triumphant — until she arrives at Yarvard.

At this citadel of tradition, marble steps and Greek columns announce that this is a world built for the nondisabled. She misses visiting the elegant Guggenheim Museum in New York, with its sculptural spiral ramp designed by the aging, disabled Frank Lloyd Wright. Most of the buildings on her campus have ugly ramps that lead to back doors. So even though she manages to get into many spaces at Yarvard, she must take separate, lone routes from her friends as she travels across campus, which feels awkward to everyone and cuts her out from important social and intellectual conversations. No one here seems to know the concept of universal design, which aspires to create a build environment accessible to the widest range of human variation and use.

The overworked and underpaid staff in the Disabled Students Services Office mediate as best they can between Judith and the ableist environment that often only ineffectively accommodates her disabilities. Several of her professors are suspicious that learning disabilities are a cover for malingerers; other teachers are gushingly patronizing, cooing with admiration for her "courage" and stiff with enormous, strained smiles. A few, especially the feminist or ethnic studies professors, seem more comfortable with her presence; they encourage without condescension. Her fellow students display a wide range of responses to her power wheelchair, her unconventional gestures, her sometimes difficult to understand speech. Some are friendly; many ignore her; others look away. She has no dates, no invitations, no flirtations. Shorn of her family, longtime friends, and the disability community she had in her hometown, Judith is alone. She is alone here because she is different from the students that this institution is built for and different from the ones that it expects to be here. This institution of higher education has yet to imagine Judith's presence in it.

What is most stunning to Judith is that at this supposed site where our collective cultural knowledge and memory resides, there are no other people with visible disabilities and disability is never mentioned in her books or classrooms. Some premed classes discuss people like her as pathological cases, but the idea of disability as a structuring feature of a valued lived life appears nowhere. A spunky girl, loved and privileged, Judith had become something of an activist before arriving at Yarvard. She knows about disability in America. For example, Judith knows that 1 of every 5 Americans has a disability, making disabled people the largest minority group in the U.S. She knows that the number of disabled people in the U.S. is increasing as demographics shift. For example, in 1900, 4% of the U.S. population was over 65; in 2030, 21 to 30% of the U.S. population will be over 65. 2 She knows that all of us will become disabled if we live long enough. However, no one seems to know any of this at Yarvard, and no one seems to notice that they don't know any of this.

Judith writes a research paper on the disability rights movement in her freshman composition class. Her professor thinks studying disability history its a very original idea; in many years of teaching, no one in this professor's couses has ever written a paper on disability as a civil rights issue. Judith learns why: disabled people are excluded and disadvantaged by ableist institutions, attitudes, and environments. Judith learns that disabled people are less likely to be employed. While 79.9 percent of working age men without a disability were employed, only 60.1 percent of men with disabilities worked; for women, the employment rates were 67.3 and 51.4 percent, respectively. She learns that disability is a woman's issue: that 26 million women in the U.S. have a disability; that women live an average of 7 years longer than men in the U.S.; that, globally, women with disabilities are more likely to receive unequal pay for equal work and experience occupational segregation than either nondisabled women or disabled men; that women with disabilities are more likely to be institutionalized than men with disabilities...3 Odd, she ponders, that this was never mentioned in her Introduction to Women's and Gender Studies Course.

What Judith learns, perceives around her, and experiences for herself in higher education deepens her understanding of how disability operates in American culture. Because she knows how to look for disability, she sees it everywhere. Many of her professors have disabilities themselves; they use canes, limp, have thick glasses, are diabetic, asthmatic, have stroke or high blood pressure related impairments. So do the parents of many students. Friendly students often mention siblings or other relatives with disabilities. One girl has a birthmark on her neck; a boy has scars from cleft palate surgery. A few even confess to her what seem deeply intimate stories and feelings about their own, always hidden, disabilities: depression, dyslexia, seizure disorders; Crone's disease, anorexia. But nobody identifies as disabled; it is always denied, disavowed, hidden, shameful, risky. Feminists, people of color, gays and lesbians form campus communities and assert pride in their differences from cultural expectations. Not disabled people: silence pervades; disability is the ubiquitous unspoken in higher education in 1995, like sex in Victorian England. Judith comes to understand that disabled people are present everywhere here, but overwhelmingly only those who can pass for nondisabled. Where are the marked disabled people: the wheelchair users, the blind, the deaf, the amputees — the ones who can't or won't pass? They are not in higher education because its shape, expectations, and attitudes keep them out.

Remember, now, Judith is plucky and privileged. She begins to feel a calling. She learns that she can study disability in the social work school, medical courses, or in applied fields like rehabilitation that train service providers that work with disabled clients. But her most compelling classes are literature, history, art, and philosophy. Disability is never discussed there. Nevertheless, Judith recognizes everywhere in her studies the concept of disability and disabled people as a community with a history and culture. Disability is a subtext that runs throughout history and culture, just as does race and gender. Her research turned up historical instances of positive identity politics and even disability pride, such as the early 20th century America's League of the Physically Handicapped. In her twentieth-century European history course, a secondary text mentions that the Nazis first developed the notorious gas chambers used to kill Jews in order to euthanize disabled people, but parallels among these groups isn't discussed in class. In her American history class, she learns that immigration is central our national being. The professor lectures ardently on the discriminatory laws such as the Chinese Exclusion Act. Even though the textbook doesn't mention it, Judith wonders if disabled people were admitted to the U.S. Her research into archival sources for her term paper on this question reveals that the most fundamental category of exclusion for immigration in U.S. history was disability. The professor tells her this paper is potentially publishable because he's never run across this approach to immigration history before. Judith minors in history.

It is literature, however, where Judith uncovers the richest tradition of disability. Judith discovers that disability as both image and concept pervades language and literature. Our language abounds with disability metaphors: we have lame ideas, blind justice, dumb luck, paralyzed wills, deaf ears, crippling traffic, and idiotic relatives. Judith gets an A on her the "highly original" paper on disability metaphors in English that she writes for her linguistics seminar. Judith finds disabled characters in our most canonical literature, from Homer's Polyphemus, Sophocles' Oedipus, William Shakespeare's Richard III, Victor Hugo's Quasimodo, Herman Melville's Captain Ahab, William Faulkner's Benjy Compson, to Toni Morrison's Eva Peace. Devouring literary biographies, Judith sees that many of our most studied authors had disabilities that influenced their writing: John Milton was blind; Lord Byron was lame; John Keats was consumptive; Walt Whitman was paralytic; Emily Dickinson had lupus; Virginia Woolf was depressed. Although the centrality of disability to human experience is recorded insistently in our narrative and our linguistic record, Judith is amazed and dismayed to learn that higher education has yet to notice or comment upon this central aspect of human experience and history. Judith majors in English and begins considering graduate school. A professor warns her of the stamina graduate school demands and refers vaguely to students' limited capacity for tolerating differences. Judith's sense of mission prevails, nevertheless, growing more ardent in the face of potential opposition.

In 1996, Judith goes graduate school at large state university whose accessible campus invites disabled students. Universities are becoming aware of Americans with Disabilities Act requirements and instituting compliance to achieve access. There is a small community of politicized disabled students here who support her scholarship, and several progressive students discuss disability in class. The English Department finds her dissertation project on disability and literature novel, but no one mentors her because there are no experts in her new field. She becomes the department expert in her own field, and this competence feels fine to her. Online bibliographies list over 300,000 citations on disability and medicine and 9 citations on disability and literature. She is the first person to write this kind of dissertation, to see disability as or complicated and significant than as simple metaphors for lack, excess, evil, or corruption. Her colleagues in the humanities professoriate find her scholarly work interesting. Hum, they say, are you asserting that Henry David Thoreau's experience of tuberculosis may have informed his thinking about resistance to civil government? Yes, Judith avows. She writes a superb interdisciplinary dissertation. But again, she is alone; this time it's because she is the only humanities scholar she knows who works on disability.

Judith gets work teaching introductory composition and literature courses for several years, but is not offered any tenure-track position because disability studies has never been advertised as a specialization in a humanities job description. She's found colleagues, though: a small community of other humanities scholars and teachers interested in studying disability. Someone in religion studies the disabled figures Christ heals in the New Testament; an historian researches the disability rights movement; an art historian works on how low vision informed Claude Monet's artistic evolution; a deaf scholar investigates how Mark Twain uses deafness as a source of humor. Together, they give papers and form panels on disability studies at humanities conferences; they found interest groups in professional organizations; they recruit other scholars to disability studies; they start a disability studies in the humanities listserv. But mostly, they teach.

In her literature classes, Judith points out how the disabled characters function in the literature. She folds disability as a category of analysis — along with race, ethnicity, gender, sexuality, and class — into topics such as American individualism, sentimental fiction, the modernist grotesque, and eugenics in the progressive era. Her students come to understand disability beyond a medical problem or a sympathy cause. She focuses her freshman composition courses — which allow teachers to select the content that imparts the skills — on the political, social, and legal issues disability raises. By integrating disability as a legitimate field of inquiry, a universal human experience, a historical community, and a diversity issue into higher education, Judith is creating an institution that can imagine the presence and contributions of people like Judith in it. She understands that integration goes beyond ramps, that access should be universal, that only when the pervasive presence of disability in culture and thought is fully included into the humanities curriculum and its knowledge base will higher education be equitable and complete.

Judith applies for humanities fellowships to write a book that shows humanities professors how to integrate disability into their teaching and scholarship. Her reviewers' comments say that although hers seems a very interesting and strong proposal, a book on such a subject as disability in literature is marginal to the main currents of American studies. She learns that the funding institution has no review panels for disability studies, as they do for women's and various ethnic studies, so her proposal must compete with traditional American literature proposals. So, Judith applies for funding to write book from agencies that fund disability projects. There her proposal is rejected because it has no quantitative research that studies disabled people's adjustment or produces cures for disability. Humanities projects are less prestigious "soft" research, rather than the "hard" research of the sciences. She considers the gender implications of this.

On the brink of leaving the profession in discouragement, Judith resolves instead to do something bold. She realizes that humanities in higher education is no ivory tower, but rather it is the site of grassroots social change where new knowledge is made and old knowledge is contested. Composition courses like hers — as well as history, art, philosophy, and religion classes — reach every student. This is where students learn to think, where our collective cultural memories , archives, and values are preserved and disseminated. She knows that only if this memory includes the history and representation of disability and disabled people in all its complexity, will disabled people be able to enter the public sphere as legitimate citizens. Only then can we all go beyond considering disabled people as simply the passive recipients of services, curing, sympathy, and charity. If disability were integrated into the humanities, our future teachers, businesspeople, workers, artists, health professionals, builders, and leaders would change the way they imagine disability, disabled people, and themselves. And changed people change institutions, Judith knows.

Judith's plan is to find support for an interdisciplinary Institute on Disability Studies in the Humanities. Her goal is infuse the presence of disability throughout the institution of higher education. She imagines curriculum development, certificate programs, minors and majors in disabilities studies, conferences, mentoring programs, fellowships, endowed professorships, affiliations with policymaking institutions and museums, bringing a humanities perspective to medical studies, creating coalitions with women's, gender and ethnic studies, and more.

Only until such institutional structures exist can higher education and the world it creates fully recognize and accommodate Judith and the other 49.7 million Americans like her. Judith needed disability studies in the humanities, so she worked to develop it. Judith needs our support. All of us will benefit from the changes Judith can make, and the institutions of higher education Judith can build.

Endnotes

  1. One can read this essay in a variety of formats today. A recent annotated version is Virginia Woolf, A Room of One's Own (New York, NY: Mariner Books, 2005).


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  2. For confirmation of the rates of disability in the U.S., see U.S. Census Bureau, Disability Status: 2000, Census 2000 Brief, by Judith Waldrop and Sharon Stern (Washington, DC, March 2003). For life expectancy in the 20th century, see U.S. Census Bureau, Demographic Trends in the 20th Century Census, 2000 Special Report by Frank Hobbs and Nicole Stoops (Washington, DC, November 2002). For confirmation of projections of the U.S.'s aging population, see U.S. Census Bureau, The Next Four Decades: The Older Population in the United States 2010 to 2050 Population, Estimates and Projections by Grayson K. Vincent and Victoria A. Velkoff, (Washington, DC, May 2010). These reports are accessible online at http://www.census/gov.


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  3. See the census reports above for demographic data on life expectancy, disabled population count, and comparative employment rates. For references and further information on the unequal status of disabled women, see "Women With Disabilities," Women Watch: Information and Resources for Gender Equality, accessed August 24, 2010, http://www.un.org/womenwatch/enable/


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