This time of anticipation is itself a kind of queer liminality, living always in anticipation of the moment that has not yet arrived…
–Alison Kafer, Feminist, Queer, Crip
Despite what inspirational stories will have you believe, the judgments of who gets to be disabled and who gets to be saved are rooted in a history of colonial and imperial violence. Most of the world’s disabled people live in the non-white global majority, where coercive neoliberal systems pressure workers to exhaust themselves for increasingly expensive costs of living while taking away the ability for people to do things as simple as build gardens instead of lawns, or to enjoy community parks for free. Industrialization, in this way, fast-tracked the erasure of thousands of years of disabled bodies—prevented from being not just normalized, but celebrated. In my own Hindu culture, stories of gods and goddesses are rampant with the bending of what a body even is, histories rejected and erased upon British colonial rule.
But I know a different history exists. I know these stories are being held in secrets and whispers and throats, passed on through my aunts at parties or through my uncles at work. And I know that there is also joy in the sharing of good stories, of good news, even when living in our present world where we are offered so little stable, dependable support for caring for others and for ourselves. I know that there is more to disability than wishing it wasn’t real. I know that we are whole, full, present, and future, all at once, and that disability justice tells us this is true even when we are constantly told not to believe it.
Disability justice is not the disabled version of other movements. It is a distinct and malleable movement with definitions that continue to change, shaped by the people who work within it, as Sins Invalid articulates in their works. But my way of making sense of it is: how do we treat people who we see as different? How do we dismantle the ableist systems and norms that punish those who are different? And how do we undo our own misbelief that being cured is the answer to who is worthy of a good life?
The disability justice movement has a storied and evolving history. Movements that defined disability rights, such as women’s rights and civil rights, were foundational for disabled people within these intersections to demand a better world in the West. Prominent cultural scholars like Audre Lorde, bell hooks, and W.E.B Du Bois led conversations on the imperative to cultivate love and care within unforgiving systems, to think of more than the courts and police as carriers of just action. But like many movements where resources are thin, power becomes concentrated with those who have the most privilege unless we actively seek out empowerment for those most impacted. The centring of whiteness in disability justice narratives in commercial, or politically correct, spaces serves to blur those who are disproportionately affected by disablement and hide from us the long tendrils of history weaving us all together.
What if we had treated the lines and the boundaries that we drew around the disabled body as the beginnings of what we could imagine beyond?
In the same way that societies have adapted to fear and to target anyone who falls under the label of “other,” disability rights are a push back against othering itself. Without including disability justice in our movements today, we erase the deep solidarities and embodied knowledge that comes from living at the margins. It was other disabled crip knowledge networks that taught me how to live with chronic pain, or a failing pancreas, or a mind that goes where it wants to. It is crip solidarity that does not pity, but feels empathy. It is crip solidarity that asks us to take the other as they are without trying to justify who they should be.
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Human beings are one of the only species who let their disabled live for so long, and in so many different ways. My partner says that in the ocean, nothing dies of old age. Our ancestors knew it early on: that the vast variety of bodies that can exist at any given moment is the most powerful tool we have. Protecting the aging allows for knowledge to be passed through generations. Protecting the child who is often the subject of control, like many disabled people are, allows for knowledge to grow and take shape. The body with cancer becomes a sight of research that saves other bodies even when it is gone. The lab rats die in droves. Media showing girls the types of bodies they have instead of selling bodies they don’t means less people die trying to be beautiful. It means that we absolutely have the resources to make sure no one gets left behind.
But one of the many pitfalls of this gift of complexity that humanity holds is how much of this learning comes from interdependence and community, reciprocity, and care. When we commit to the myth that happiness comes from independence alone, we signal that complete independence is possible. And I’ve had to stop myself and ask:
What if it wasn’t?
“Je pense, donc je suis.”
Western French philosopher René Descartes’s first principle is the infamous line “I think, therefore I am.” It came from a growing tradition in which the independent, cognitively-able self was the most valuable form a man could take. This ideal man’s worthiness was measured by not only his ability to understand the world around him but the ability to move freely and act freely within that world. Under this model, individuals who lack the ability to make these decisions, such as those with full-time cognitive needs, are not fulfilling a worthy life at all. Any individual who relied on a network to take care of their physical or cognitive needs was ultimately someone who couldn’t stand up to the same test of worthiness. The independent and autonomous self became the leading model of able-bodied, fulfilling life. Labels such as disability were not additive labels that held their own productive meaning, but ones that derived from the dysfunction of ability. Being diagnosed or labelled with a disability was not a positive attribute, but a mark of deviance from the norm. In many cases, it was a prescriptive and premature death sentence.
Italian Renaissance artist and scientist Leonardo da Vinci talked about ideal bodies, too. In his famous drawing Vitruvian Man, the depiction of a white male with mathematically perfect proportions was widely shared as right. Circled with lines and numbers, da Vinci was working to prove Vitruvius’s idea: that perfection existed, and could be achieved. The pursuit of perfection became an exclusionary and discriminatory act.
What if we had treated the lines and the boundaries that we drew around the disabled body as the beginnings of what we could imagine beyond? What if we didn’t link the worthiness of life to be limited to those with the ability to think at all? What kind of world could be built if each body’s fact of existence was deserving of a full life, whatever “full” meant?
People call me codependent. If you combined and then divided me and my partner in half, you might believe we are two normal bodies. But we’re not. When I can’t take my own insulin, his hand holding the needle to my thigh is my new limb and the pen is my pancreas. When he can’t find his glasses, I am his eyes. He helps me walk over ice and I drive him to get his blood pressure medication, or get our blood drawn together. He carries juice for me if I get hypoglycemic. We share the work of surviving.
For those of us who are new here (like me), there are some competing theoretical models of how we understand disability. A model in which the emphasis is put on an individual’s physical and measurable bodily dysfunction is called the medical model. Theorists often refer to this model as outdated simply because of the fact that an individual is not responsible for all the ways in which they have become disabled or were born disabled or will be disabled. But if it’s not the individual who causes or is the source of disability then there has to be a different model. The social model of disability argues that it isn’t individuals who are disabled, it is society that is disabling. (Joel Michael Reynolds does an incredible job weaving the philosophical and theoretical history of disability together in their book The Life Worth Living.)
My mother’s arms bear scars from where hot deep-fry oil melted her skin. She arrived in Canada with an engineering degree, and got a job at McDonald’s. Jasbir K. Puar writes about this: how “the right to maim” remains with those in power and predetermines who is marked for disablement. White society benefits from maintaining this right and instead of creating safe working conditions, meaningful work, and liveable wages, immigrant and coloured bodies are relegated to substandard qualities of life to sustain the few. The harm that comes to their bodies as they work in these conditions are all part of the normalization of their bodies being disabled. Outside of the Western shores, wars are waged on foreign soil. Imperial powers are allowed to kill. One hundred CEOs are allowed to pollute even though pollution affects the global majority most of all.
In Canada we learned years ago that the asbestos in the very walls surrounding us was toxic. My heritage high school went through expensive renovations to maintain the historical structure and remove the poisonous material that had been a staple of industry. Fuelled by activists who used evidence to prove asbestos could not be safely worked with in Canada, almost every mine was shut down, but today, a few are still open, despite indisputable evidence. They ship to one place: my home province of Gujarat. Unmasked workers breathe in the toxins too dangerous for white bodies. People who look like me die so mineworkers in Quebec with full protective equipment can live.
But this just means that a purely social model of disability isn’t enough either. You can live in a society where you have access to care at the level you need if you do dangerous, debilitating work like this (theoretically). There are diseases that aren’t priorities for cure because we can ease symptoms. It’s relative. A speech development issue in a young child in the West may not result in lifelong cognitive impairment; in rural India, it often does. The geopolitics are embedded in biopolitics and power.
Disability communities include people who live in close proximity to disability as well. Paid caregivers are almost always marginalized women of colour, from long-term care attendants, janitorial staff, mobility and care workers, all the way up to nurses and physician’s associates. But at home, these same women are also caregivers for their family. Oftentimes, these individuals who are intimately familiar with the disabled space and disabled embodiment are not considered part of the disability community when it comes to legal rights and benefits. Helping with daily hygiene tasks or feeding and cleaning, women in these jobs are considered Iow-skill labour. Societal conferral of expertise and gratitude are not granted toward them as marks of respect for meaningful work, but as thanks for doing a job that no one else wants to do. Disability care work in this way becomes yet another facet of neoliberal capitalism’s fixation on assigning value to life through discriminating worthiness. Even the people who take care of disabled people, like special education teachers and personal aides, are underpaid and the first to be cut when budgets get tight.
The value of the disabled body is rooted in the context of value added for other people. There’s this myth in Western societies that we value every body, a dream of immigration for many, but even fourth-generation white settlers grapple with the reality of this untruth. If we closely examine populist anti-choice movements today, we can see that both discriminating against women’s bodies and children’s bodies follow ableist values, too.
The support for pro-life movements are rooted in the philosophical value of the limitless potential of a child. In many supporters’ minds the child who is unborn could be anything: a re-creation of God, a saviour, they could be a hero, all of which are dreams rooted in norms of able-bodied achievement. But it actually gets more nefarious than that because the value of this theoretical child is also more important than the value of a life that already exists, in the form of the child-bearer. The consequence of this thinking is that the person bearing a child has already ruled out their own possibility for achieving the type of greatness that exists only in dreams. It also blames any failure of that child to reach their potential on both the child-bearer as well as the child itself. This absolves the pro-life community of responsibility for these children, for their allyship exists only to bring the child to life, not guarantee a good living, which is the sole burden of individuals. The child itself must be perfect, whatever perfect means, or else the child is not our problem.
I can’t help but dream of that care web expanding, being blown into the sky like a parachute in the school gymnasium. And we crawl under. There is room.
“Perfect” is once again a convenient train of thought that can justify anything. It means that any theoretical, extraordinary child is always going to have a better life than a child who isn’t born (people can, and have, argued that the effects of poverty on women forced to give birth is lifelong and disabling, but this argument doesn’t matter if “value” is a binary of life and death). In this way the able body exists only as a dream and even as a dream is held up as the standard of both morality and law. Additionally, the deliberate exclusion of the disablement of the child-bearer through the active pregnancy (and also often from the consequences or side effects as well) is something that is ignored in this support of a theoretical child. It is an entire conception of “worth” solely based on being dead or alive, without nuance.
The disabled body in the same way is often stripped of its possibilities, and therefore its value, when a limited potential is actively realized through disablement. I am not possible anymore. I am a liability.
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So what is it that sets the disabled body apart?
Before the start of the pandemic, I fell very ill. I was afraid I had suffered a blood clot or a heart attack. It ended up being pneumonia that I had caught touring across poetry slams in Canada. A child’s illness, and certainly one I’d lived through already without issue. I thought it would be a quick recovery.
It wasn’t.
I had already fallen in love with my partner, but as he waited in the hospital with me hoping that I hadn’t irreversibly damaged my body, we formed a bond that I cannot describe. The trust that it required to be sick and vulnerable was immense, because a sick body is a body that does not realize a neoliberal potential of perfection. It is a body that loses this future (or so my partner and I thought). And because we give out trophies to people who overcome, and adapt, and speak in high hopes, failing to be optimistic is a liability too.
All of this is seen and witnessed by those nearest to you.
The follow-up of care, weeks after, created a level of intimacy that was not romantic in nature, but something else. As I made the poor decision to go back on tour with pneumonia, I lived in a dream-wake state. My groundings of time became touch, cups of orange blossom tea, and the sound my lungs made as I exhaled, like crinkled wrapping paper.
I remember something more than taste. When my partner put food in front of me and made sure I ate, we existed in a moment that couldn’t have existed otherwise, where this meal was unlike any other meal, holding time and love and grief.
I cannot know the answer to how we all get to that place. I know I do not wish disablement on others, not at all, in the same breath that I also wish being disabled hurt less, and that I know being disabled has brought me genuine joy that I did not feel before. I know there are things I cannot do with this body and that it is the power to not be able to do everything that will force us to expand our definition of the future, not limit it. And I know there is a disabled future within me. I know I might not die of old age. Neither did the lab rats. I am evidence that my ancestors withstood a famine and a war and a conquest.
Alison Kafer tells us we cannot define disability, that definition sets limits that reinforce power inequality. Not having a definition of disability is the whole point, I think, even though I know it scares people to give up control. The bodymind is something more than an accumulation of choices I make or a reflection of my good ones.
Being disabled, and joining the fight for disability justice, starts here: accepting that disability is not an end to life, but the start of an expansion into dreaming a better future beyond the limits. It is hard work to make stuff up, to make sure we leave no one behind. But maybe it gets easier if we all do it and make mistakes and try again at the same time. Maybe it gets easier, together, easier, together. I can’t help but dream of that care web expanding, being blown into the sky like a parachute in the school gymnasium. And we crawl under. There is room.
