It’s easy for people to dismiss online activism as somehow fake, or at least not significant. When it comes to disability in particular, that’s a mistake. Twitter is the most accessible real-time conversation. It is not perfectly accessible, but its text-based public nature allows people to talk to one another who have radically different modes of interacting with the world. People who have difficulty leaving their homes for reasons of physical or social disabilities, people who are blind or deaf (or both), who do not speak verbally and communicate by typing (regardless of appendage used to type), and those with other disability-related access needs can all use Twitter to talk to each other. I have been in wildly accessible physical spaces, with captioning, ramps, sign, and warnings about a lack of scent. It is possible to make accessible spaces, but Twitter brings us together by design. It’s a space, therefore, where the disability community can manifest as a powerful constituency. And it doesn’t hurt that both journalists and political operatives also hang out on Twitter.
Selected quotes on the ableist framing of “normal”, “natural”, “defectiveness”, and “overcoming” from the opening of Eli Clare’s “Brilliant Imperfection: Grappling with Cure”.
On “overcoming” disability
Overcoming bombards disabled people. It’s everywhere.
To pose individual hard work, rather than broad-based disability access, as the key to success for people with dyslexia is absurd and ableist.
Sometimes disabled people overcome specific moments of ableism—we exceed low expectations, problem-solve lack of access, avoid nursing homes or long-term psych facilities, narrowly escape police brutality and prison. However, I’m not sure that overcoming disability itself is an actual possibility for most of us. Yet in a world that places extraordinary value in cure, the belief that we can defeat or transcend body-mind conditions through individual hard work is convenient. Overcoming is cure’s backup plan.
Declaring disability a matter of social justice is an important act of resistance—disability residing not in paralysis but in stairs without an accompanying ramp, not in blindness but in the lack of braille and audio books, not in dyslexia but in teaching methods unwilling to flex. In this declaration, disability politics joins other social change movements in the ongoing work of locating the problems of injustice not in individual body-minds but in the world.
On “normal” and “natural” and cure
As an ideology seeped into every corner of white Western thought and culture, cure rides on the back of normal and natural.
First, cure requires damage, locating the harm entirely within individual human body-minds, operating as if each person were their own ecosystem. Second, it grounds itself in an original state of being, relying on a belief that what existed before is superior to what exists currently. And finally, it seeks to return what is damaged to that former state of being.
The vision of me without tremoring hands and slurred speech, with more balance and coordination, doesn’t originate from my visceral history. Rather it arises from an imagination of what I should be like, from some definition of normal and natural.
At the center of cure lies eradication and the many kinds of violence that accompany it.
On “defectiveness” and eradication
Defectiveness wields incredible power because ableism builds and maintains the notion that defective body-minds are undesirable, worthless, disposable, or in need of cure.
Cartwright and the rest use the ableist invention of defectiveness in order to explain and justify the practices of enslavement, imprisonment, institutionalization, and state violence. In essence, they fortify white supremacy by leveraging ableism.
The list of body-mind differences, illnesses, and so-called defects that the medical-industrial complex wants to eradicate goes on and on. This kind of elimination benefits some of us in significant ways—saving our lives or increasing our comfort. At the same time, it also commits damage, routinely turning body-minds into medical objects and creating lies about normal and natural.
as a widespread ideology centered on eradication, cure always operates in relationship to violence.
On the bright side
We take constraints that no one would choose and build rich and satisfying lives within them.
“The right to learn differently should be a universal human right that’s not mediated by a diagnosis.”
For “all means all” to be meaningful for neurodivergent and disabled students, we must commit to this.
if you are not budgeting for events to be accessible, what are you prioritizing over the inclusion of everyone?
As indicated by the title, the first essential term for this book is bodymind. Bodymind is a materialist feminist disability studies concept from Margaret Price that refers to the enmeshment of the mind and body, which are typically understood as interacting and connected, yet distinct entities due to the Cartesian dualism of Western philosophy (“The Bodymind Problem and the Possibilities of Pain” 270). The term bodymind insists on the inextricability of mind and body and highlights how processes within our being impact one another in such a way that the notion of a physical versus mental process is difficult, if not impossible to clearly discern in most cases (269). Price argues that bodymind cannot be simply a rhetorical stand-in for the phrase “mind and body”; rather, it must do theoretical work as a disability studies term. Bodymind is an essential concept in chapter 3 in my discussion of hyperempathy, a nonrealist disability that is both mental and physical in origin and manifestation. Bodymind generally, however, is an important and theoretically useful term to use in analyzing speculative fiction as the nonrealist possibilities of human and nonhuman subjects, such as the werewolves discussed in chapter 4, often highlight the imbrication of mind and body, sometimes in extreme or explicitly apparent ways that do not exist in our reality.
In addition to the utility of the term bodymind in discussions of speculative fiction, I also use this term because of its theoretical utility in discussions of race and (dis)ability. For example, bodymind is particularly useful in discussing the toll racism takes on people of color. As more research reveals the ways experiences and histories of oppression impact us mentally, physically, and even on a cellular level, the term bodymind can help highlight the relationship of nonphysical experiences of oppression—psychic stress—and overall well-being. While this research is emergent, people of color and women have long challenged their association with pure embodiment and the degradation of the body as unable to produce knowledge through a rejection of the mind/body divide. Bodymind provides, therefore, a politically and theoretically useful term in discussing (dis)ability in black women’s speculative fiction and more.
Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time.
Forced intimacy is a sign you failed to design for inclusion.
The distributed model can be a boon to folks who have difficulty working in an office, but ultimately it’s up to the people who create and design work environments — distributed or co-located — to recognize that there isn’t a normal employee or a normal mode of work. There are no abnormal employees with abnormal needs. Companies should reject this false dichotomy and acknowledge that every employee is different, and that some might also experience several forms of difference and marginalization at once. Everyone, however, is likely to be happier and more productive when they have choices, agency, and a way to express their individual needs.
What I’ve learned in the five years since then is that parenting Edmund boils down to one major issue: Do I want to change my son so he can fit into the world, or do I want to change the world so it accepts my son as he is? I have learned I should strive for the latter.
Why is fairness to people with disabilities a different problem from fairness concerning other protected attributes like race and gender?
Disability status is much more diverse and complex in the ways that it affects people. A lot of systems will model race or gender as a simple variable with a small number of possible values. But when it comes to disability, there are so many different forms and different levels of severity. Some of them are permanent, some are temporary. Any one of us might join or leave this category at any time in our lives. It’s a dynamic thing.
I think the more general challenge for the AI community is how to handle outliers, because machine-learning systems—they learn norms, right? They optimize for norms and don’t treat outliers in any special way. But oftentimes people with disabilities don’t fit the norm. The way that machine learning judges people by who it thinks they’re similar to—even when it may never have seen anybody similar to you—is a fundamental limitation in terms of fair treatment for people with disabilities.