Nothing About Us Without Us
What Can A Body Do?: How We Meet the Built World by Sara Hendren.
I have a pretty strict rule when reading about disability: I only cite books by disabled authors. When I was asked to review Sara Hendren’s new book What Can a Body Do?, I had already heard some of the critiques from disabled writers, and anticipated more of them. This collection has received a lot of attention in academic circles, and it felt critical to look more closely.
Disabled writers are tired of reading books about disability written by non-disabled people. Hendren has been granted the privilege to speak for a community to which she does not belong, just like so many non-disabled parents and caregivers whose heartbreaking tales of sacrifice have garnered so much mainstream recognition. Michael Bérubé’s memoir Life as We Know it: A Father, a Family, and an Exceptional Child objectifies the author’s kid, born with Down syndrome, as Hendren’s first child also was. Other writers have also entered these waters after their own experiences with illness. Sarah Manguso’s The Two Kinds of Decay: A Memoir pores over the author’s illness from an autoimmune condition, rife with eugenical metaphor after ableist metaphor (a wheelchair is described as “a sickening prop”). Non-disabled colleagues recommend these and other books to me, and I have to hide my disgust. These books are published in the US by conglomerates such as Vintage, Picador, and now Riverhead.
Meanwhile, brilliant disabled writers such as J.R. Hughes, Jimena Lucero, Karrie Higgins, and many others cannot secure contracts after publishing their searing poetry and prose in zines, blogs, and small independent magazines for years and sometimes decades. This disconnect is thick with the ableism of Western capitalist industries: without disabled editors, agents, and acquisitions staff, without understanding audiences as including sick and disabled people, publishing has no motivation to do anything differently.
Regardless of what Hendren’s intentions may be, What Can a Body Do? capitalises on these exclusions, bringing critical disability studies of the built world to an audience that is entirely removed from the disability justice organising and advocacy that has been growing throughout North America since the 1990s. “I was partly imagining readers who are nondisabled and thinking these subjects don’t have anything to do with their lives – like, here’s an invitation, this involves you too!” Hendren acknowledged in an August 2020 interview with Alice Wong from Disability Visibility Project. Hendren’s own interests in art, design, and engineering – she’s an associate professor at Olin College of Engineering, a private non-profit college in Needham, Massachusetts – converge in a simplified narrative on “disability rights” that is without its essential framings of justice and intersectionality. Of which more later.
“Without disabled editors, agents, and acquisitions staff, without understanding audiences as including sick and disbled people, publishing has no motivation to do anything differently”
Throughout her text, Hendren centres theories of universal design, DeafSpace, cyborgian, and science and technology studies. Her first chapter, ‘Limb’, focuses on several amputees and the ways they’ve used adaptive technology alongside household items and their bodies to navigate the spaces they inhabit. Hendren discusses the difference between “assistive” and “adaptive” technologies and details how several of her subjects negotiate day-to-day tasks with everything from “bionic arms” to zip-ties. “Assistive technology”, Hendren argues, is redundant and misleading terminology, because “assistance is universal whenever we talk about tools”. Prosthetics are instead better captured as adaptive technologies: “Tools don’t run the show; they work together with bodies in a mutual exchange of adaptation.” The chapter also explores the creation of prosthetics and their distribution by exploring the “Jaipur Foot”: a below-knee prosthetic that is designed to be affordable and tough. Hendren emphasises the fluidity of each body’s access needs and the creative ways her subjects have adapted to their environments, sometimes with the aid of expensive rehabilitation engineering gear, sometimes with zip-ties and homemade pulleys.
For Hendren, these examples show how design illuminates problems and possible sites of innovation within assistance and technology, and the space where body-meets-world. She acknowledges disabled people’s centrality to generative design, and the creative survival techniques of disabled people under the social model of disability, but the text still betrays Hendren’s own “inheritance of normal” as a sympathetic outsider. Even while her text neglects the work of disability justice activists – notably multiply-marginalised disabled activists like TL Lewis, Leah Lakshmi Piepzna-Samarasinha, and Alice Wong – she centres work by canon non-disabled scholars and academics, building credibility with non-disabled audiences. “Our distinctions and specificities are important,” she writes. “But for disability and design in this book, the we is both real and profound[…] Not everyone should call themselves disabled, but everyone should recognize that both giving and receiving assistance are actions we will each take up in turn, every one of us. Human needfulness really is universal.”
Hendren tries to make her work ethical: the introduction especially is filled with authorial anxiety about her book, particularly in that scrutiny she applies to her use of “we,” an underexamined rhetorical strategy in writing across many fields. On page 5, in the book’s first footnote, Hendren explicates her choice to alternate person-first and identity-first language throughout the text. While I – a trained rhetorician, keenly aware of how choices around language influence and organise our thinking – appreciate this note, the hardcover and audio versions of the book differ interestingly: “I’ll also use nondisabled or atypical instead of normal,” writes Hendren in the text. In the audiobook, the author says instead, “I’ll also use nondisabled or typical instead of normal [emphasis mine].” I was struck by this, as the note is clearly included to articulate the goals of person-first language and identity-first language, and yet this minuscule syllable drop entirely changes the meaning of the aside. It’s likely just a typo that was then amended for the audio book, but the slip parallels Hendren’s confusing tone throughout the wider text. It is a common non-disabled refrain: non-disabled people ought to consider the ways bodies meet the built world because of their own future illness and debility (the “universally shared[…] misfit states that come for every body,” in Hendren’s words.)
For the uninitiated, I should mention that the person-first v. identity-first language conflict holds a lot of tension and disagreement within disabled circles: caregivers tend to fight intensely for person-first language (e.g. person with autism) to remind speakers that disabled people are people first, before they are their diagnoses or conditions. For most disabled and neurodivergent people, our illnesses, neurotypes, and embodied experiences are essential parts of who we are and cannot be severed from our person-ness, so we tend to prefer identity-first language (e.g. autistic person). This footnote neatly illustrates Hendren’s positionality: she is nondisabled but feels affiliation with the disabled community through her disabled child. She is a quintessential “disability mom”, who developed research interests in disability identity, history and culture, and has sought entrée to disabled space for her writing. “If you look at my work, I think you’ll see that I try to do my part in centring disabled voices, full stop,” Hendren told Wong. “I’d also like to keep articulating a place for folks like me, whose role in a life-long ecology of care as the parent of a person with Down syndrome implicates my very material life permanently and therefore connects me in a powerful, existential way to all disabled people.”
“Our distinctions and specificities are important, but for disability and design in this book the we is both real and profound.”
Hendren’s positionality becomes slightly obscured throughout the text, but we are hit with its sobering resurgence in the conclusion, ‘Making Assistance Visible’, where she writes: “How might we emphasize the figure, the symbolic person of the icon, more than the wheelchair? [emphasis mine].” Here, Hendren discusses her work on the International Symbol of Access (ISA) project, which includes the laudable goal of adding dynamic human movement to the long-used blue-and-white wheelchair user symbol, commonly seen on disabled parking and accessible entrances.
Unfortunately, the phrasing here makes a crucial, ableist error. By writing that we need to “emphasize the figure[…] more than the wheelchair,” Hendren assumes a non-disabled audience; an audience that requires regular reminders that disabled people – especially disabled wheelchair users – are human. By centring non-disabled viewers’ responses to the ISA, Hendren echoes common American ideologies of “colourblind” racism and flattening layers of difference into more comfortable (read: white, normative) forms. Why do non-disabled people need constant reminders that disabled people are human?
These things matter, and not solely in relation to disability alone. “No humans involved” has long been a designation used by carceral institutions in the United States to describe instances of violence against sex workers, Black people, disabled people, poor and homeless people, in order to avoid legal liability. It is a practice that indicates the deprioritisation of marginalised and racialised people who don’t qualify as “human” under white supremacist metrics. Sylvia Wynter’s No Humans Involved: An Open Letter to my Colleagues (1994) explicitly details this “N.H.I.” designation as being rooted in virulent anti-Blackness, stating that “whilst not overtly genocidal, [the impact of N.H.I. is] clearly having genocidal effects with the incarceration and elimination of young Black males by ostensibly normal and everyday means”. Notoriously, the Los Angeles Police Department used the N.H.I. designation when investigating the murders of Black women sex workers.
For Hendren to casually mention “the symbolic person” in the ISA without seeming to understand the impact of her dehumanising gaze is troubling, especially considering her total lack of discussion of structurally disabling forces at work against Black people – both disabled and non-disabled. Disabled people aren’t “symbolic persons”, and despite Hendren’s well-meaningness, the total erasure of the intersections of Blackness and disability in What Can a Body Do? reflects a number of worrying patterns. Interest in and observation of cultural phenomena for academic purposes does not an expert make. The myopia of academia holds a place for Hendren’s claims that “[a]ssistance, dependence, vulnerability: these embodied experiences have the dignity of the truly human about them.” But without establishing the relationship between “humanity” and the dehumanising ideologies that persist about Black, disabled, disfigured, and other multiply-marginalised people, Hendren’s words echo in a landscape devoid of meaningful context. To examine “the built world” requires a grasp on invisible structures that inform every single material condition Hendren wants to tackle.
“Interest in and observation of cultural phenomena for academic purposes does not an expert make.”
Hendren manages to get through 191 pages of writing (out of 208 pages) on contemporary disability and design without including the topic of race. The inimitable Audre Lorde appears in ‘Limb’, in which she is quoted at length from The Cancer Journals on the topic of prosthetics. But Lorde’s own work is only included to situate Hendren’s discussion of a handful of (presumably) white people’s experiences with their prosthetic limbs, missing the nuance of Lorde’s own experience with mastectomy and her Black lesbian sexuality. Hendren’s descriptions of characters in the book never include race, meaning that we are to assume their normative whiteness, and that “we,” the readers of the text, can assume a level of familiarity and comfort with those included in Hendren’s text. This seems a failure at both authorial and editorial levels: it is incredible to publish a book on infrastructures of power that ignores the most visible and egregious forms of oppression that intersect with disability. One only has to look at rates of Covid infection and vaccination, and death for Black Americans to see this illustrated with profound effect.
But the fact remains: Hendren has been allowed into spaces by and for disabled people, and despite her proximity to disability she inevitably misses much of the complexity that disabled people bump against in the built world. By focusing on utopian examples such as the D/deaf-centric architecture of Gallaudet University and the Adaptive Design Association’s work in New York City, Hendren avoids both the realities of carceral ableism (it is estimated that nearly 50 per cent of people murdered by police in the US are disabled) and the near-constant harassment and surveillance that mark the disabled experience, especially in the United States.
Hendren is clearly a thoughtful writer, and some of the critiques I’ve made are not exactly her fault. Individual authors cannot be held accountable for the failures of publishing, of academia, of the non-disabled imagination’s fascination with the spectacle of non-normative embodiment. She takes pains to cite disabled scholars, including Aimi Hamraie, Alison Kafer, and Rosemarie Garland-Thomson; some of her case studies are interesting and framed by researched context and insightful questions. But for disabled writers and scholars, none of these questions are especially groundbreaking. Hendren’s “we” remains both non-disabled and utterly unfamiliar with the rich depths of disabled culture that have enabled her to peek into the surface of our worlds, our creative and liberatory interdependence, our uncommodified care and epistemology.
“What if the future of design centred actual disabled people instead of people writing about us, as if our embodied lives are mere case studies for engineering students to learn from?”
Perhaps the most infuriating section appears in ‘Clock’, Hendren’s chapter focused on crip time – the inevitable slowing and attunement to pacing and meeting the emergent needs of a disabled bodymind. In my world, Hendren would not even be allowed to utter or use the term “crip” anything as a non-physically-disabled person, yet in ‘Clock’ she details her disabled son’s capacity: his simple “joy” in schooling and living. Hendren and her husband’s sudden stumbling into the world of disability as a site of cultural value upon her son’s birth co-occurs with condolences and grief from friends and family upon learning of the child’s diagnosis, neatly illustrating how non-disabled people all too often adopt an infantilising gaze onto disabled people. Ellen Samuels, a disabled scholar with whom I share a debilitating chronic illness, coined the term “crip time” after her capacity rapidly diminished as a young adult. I came to claim my own “crip time” for the same reasons: I went from waiting tables three days a week while in graduate school to using mobility aids daily in less than a year. No diagnosis, no insight from medical testing nor dozens of specialists.
My experience is by no stretch unusual, and Hendren seems to struggle to grasp – as most non-disabled people do – that capacity is constantly in flux for all of us, disabled or not.[1] But “unhealthy” disabled people have a unique perspective on crip time: we have very little control over if or when we will feel well enough to work, socialise, or even leave the house or bed. Writing this review is an illustrative example: I promised a draft the first week of January, failed to meet my own deadline, and then waited until I could take medication to help me work against the crushing fatigue of my daily life, now shrunken to my two-bedroom apartment with a partner and two cats during Covid.
While Hendren tokenises her child as an illustrative example of what a body can do, more precisely she is concerned with explicating for her readers, what can my child’s body do? A disabled child deserves privacy, to disclose their own needs at their own pace, to articulate their own experience in whatever way is best for them. The established pattern of disability moms (and dads) narrativising their children’s experience on their behalf is coercive and unethical, running counter to the disability activists’ code: “nothing about us without us.” In this case, however, Hendren’s text is entirely about us with very little of our own words: each quote is left up to Hendren’s interpretations, coloured as they inevitably are by her position in an ableist culture of publishing, academia, and the United States.
As I, too, quietly publish my work in zines, tiny internet mags, and small press chapbooks, I find myself quietly fuming at Hendren’s casual, chirping positivity for the future of design and access by citing neoliberal understandings of individuals and communities. What if the future of design centred actual disabled people instead of people writing about us, as if our embodied lives are mere case studies for engineering students to learn from? These are not new concerns; far from it, in fact. But Hendren’s enthusiasm for collecting examples of innovative disabled individuals obscures the fact that we have been forced to survive creatively under the disabling conditions of white supremacist capitalism. Our innovation should be honoured, yes, but to single out the supercrips thriving in a eugenical world misunderstands the very structures Hendren claims to elucidate. In truth, the “networks of caretaking that sustain us all” do not, in fact, sustain many of us.
What Can a Body Do?: How We Meet the Built World by Sara Hendren is published by Riverhead Books, price $27.
1 New research provides insight into diagnostic wait times for various “rare” illnesses in the United States; my own (still undiagnosed) chronic illness averages eight years between onset and diagnosis, and sometimes much longer than this.
Words Jesse Rice-Evans
This article was originally published in Disegno #29. To buy the issue, or subscribe to the journal, please visit the online shop.