In October, the nation celebrates National Disability Employment Awareness Month, which had its beginnings in 1945 as the “National Employ the Physically Handicapped Week” to encourage the hiring of injured soldiers returned from WWII. In 1962, “Physically“ was dropped from the title to encourage the employment of all “handicapped” persons, and in 1988 the week of awareness was expanded to a month, and “handicapped” was replaced by “disability.” In the Barack Obama Presidential Proclamation of 2015, we hear a celebration of America’s long struggle “to make our Nation more perfect . . . so that every American has the chance to develop their skills and make their unique mark on the world we share” (). In what follows I argue that the intersection of disability and work is complex, as the work of care necessary to prepare a disabled person to go out into the world is done behind closed doors, often by workers whose labor is often undocumented, unseen, and undervalued.
I broke my neck fifteen years ago, leaving my bodymind (that inseparable assemblage of body and mind that makes a person) “significantly paralyzed in all four limbs”—the diagnostic language of quadriplegia. After months of hospitalization and a year and a half of outpatient physical therapy, I was able to return to work half-time as a professor at Wesleyan University, and because I was employed at the time of my accident, I have long-term disability insurance that supplements my reduced income. I use voice-recognition software to write and read digital texts rather than papers and books. I use a wheelchair to get around, and I have a modified van that enables me to drive. With modifications for access both at home and at work, I am at liberty to come and go as I wish.
To my colleagues I look both autonomous and independent, and my life apparently confirms the optimistic prediction that someday “every American” will have the satisfactions of meaningful work and, as importantly, a paycheck. My life, however, is exceptional—the US Bureau of Labor’s statistics tell us that only 18.7% of disabled people are employed, so both my private and public life give the lie to “National Disability Employment.” I’m an outlier to the facts, first because I have a job at all, and second, because my job actually does give me “the chance to develop [my] skills and make [my] unique mark on the world we share.”
Moreover, my ability to work at all is dependent upon the caring labor of another that I cannot do without. Someone needs to help me get ready and put me in my chair before I can even venture out of the house. This work is done behind closed doors, as is all domestic labor, and goes unmentioned in the presidential proclamation about “disability employment.” Feminists realized long ago that domestic work is work, not a labor of love, but an unpaid job done almost exclusively by the women of the house or by paid domestic workers (see the work of Sylvia Federici). Given the race- and gender-segregated labor markets in the U.S., the people who do domestic work are overwhelming women of color, either African Americans or migrants from the global South. These facts have a long reach and a global scope—the everyday realities of my intimate life call up the long dependence of white people on the labor of Black enslaved persons and remind us of the unfinished work of decolonization.
How best to address these complex interdependencies? You can start browsing among the books that NYU Press has published in the field of Disability Studies and in the Sexual Cultures series edited by Ann Pellegrini, Tavia Nyong’o, and Joshua Chambers-Letson. Another important resource is Valuing Domestic Work, the fifth in the series New Feminist Solutions published by the Barnard Center for Research on Women. Following an extended discussion of the dangers that face workers working in an informal economy, behind closed doors, without any official oversight or public record of the work, you will find the model of a contract drawn up by the National Domestic Workers Alliance. A contract alone cannot possibly address all of the injustices that I write about above, but it’s one practical approach that organizers recommend. Such are the complexities of caring labor. It requires analytic clarity to understand how bodies and livelihoods come together.
How do those of us who, in Eli Clair’s unforgettable phrase, live with “brilliant imperfections,” act rightly toward the care workers who labor to get our imperfect bodyminds ready for daily life? This question suggests that we need far more than the soaring rhetoric of a presidential proclamation about how “every American” should have the opportunity to work outside the home.
Let us think together, then, about the work that is done in domestic spaces and the work that is done in public. Otherwise we will miss the crucial connection between bodyminds that need care and those who do the work of care. In “National Disability Employment Awareness Month” we must recognize the indispensable work already being done behind closed doors.
Christina Crosby is a Professor of English and Feminist, Gender, and Sexuality Studies at Wesleyan University. She is the author of A Body, Undone: Living On After Great Pain and The Ends of History: Victorians and the ‘Woman Question’ (1991) and has published essays and reviews in Victorian Studies, PMLA, College English, and elsewhere.