As a philosopher, I have come to think of philosophy as a mode of suffering. The various forms of injustice that I bear witness to belie the tranquility that philosophy implicitly offers. Philosophy is said to offer promises of lucidity and sober reflection. It has been said of Socrates that he never cried. But unlike Socrates, I have wept. As a philosopher who refuses to avert his eyes from the pain suffered by so many people because of the existence of oppressive hegemonic structures and violent and dehumanizing discourses, I must tarry with the weight of human suffering. Trying as best I can to avoid obfuscating the ways in which I am complicit in forms of injustice, I try to un-suture, to open myself to be touched (wounded) by the lived realities of others. At times when I think that I’ve come to understand the magnitude of social injustice, the ways in which human beings have experienced marginalization, ostracization and exclusion, I am deeply troubled by the limits of my moral imagination. There is a real feeling of moral failure, the reality that I have failed others because I was possessed by some overconfident and exaggerated moral sense that I’m on the side of all of those who experience social injustice and the effects of oppressive regimes that exist undetected by normative structures of power. This sense of moral unmooring is profoundly generative, and it deeply troubles the coordinates of one’s moral self-certainty.
This is precisely why I found it necessary to engage in this critical conversation with Joel Michael Reynolds on the theme of disability studies. Reynolds provides an important framing of disability studies and its powerful critique of somatic normativity, which defines non-normative bodies as the constitutive outside; in other words, an assumed standard of embodiment functions to relegate those who do not fit this standard to that which does not “belong,” is “deviant,” and “inferior.” In this profoundly rich conversation, Reynolds destabilizes ableist assumptions, revealing the ways in which “abilities do not inhere in individuals; abilities are functions of relationships as shaped by access.”
Reynolds is an assistant professor of Philosophy and Disability Studies at Georgetown University, senior research scholar in the Kennedy Institute of Ethics, senior bioethics advisor to The Hastings Center, and faculty scholar of The Greenwall Foundation. He is the founder of The Journal of Philosophy of Disability and co-founder of Oxford Studies in Disability, Ethics, and Society. His most recent book is The Life Worth Living: Disability, Pain, and Morality (The University of Minnesota Press).
George Yancy: As you know, Western philosophy has historically been conceptualized as a disembodied form of thinking (from Plato to René Descartes) where the effort is to search for and discover “Truth” (with a capital T). The search is envisioned as conceptually “neutral” and “apolitical.” In this way, philosophers embrace the fantasy of seeing themselves as being able to leave the body behind and dwell within the realm of pure abstraction. Yet, given the emphasis upon the fact of embodiment within disability studies or philosophy of disability, the body must, it seems to me, take center stage. Given your training as a philosopher within the Western tradition, talk about how it was important for you to dismantle many of the apolitical and body-averse assumptions embedded within that tradition.
Joel Michael Reynolds: I was born with a club foot in North America in 1985. That place and that year are relevant, for they determine both that and how I get to respond to your questions today. The persistent myth that “contemporary,” “modern” societies treat people differently clings on today. But the truth is just as hard to accept as it is obvious: We [as a society] still judge the worth of a person, and even entire groups, based on their body or, put better, their bodymind, that is, based on their body and mind (not split/separated). From how one looks to how one moves to who one desires, most human societies today draw quite clear lines in the sand. If you are on one side, your life is going to be very difficult, even to the point of death. If you are on the other, your life is going to go comparatively easy.
To the extent that a given intellectual tradition, whether described as philosophical, religious or political — keeping in mind that all these terms are blurred, not distinct, across most of human history — downplays or ignores the role of embodiment, that tradition betrays humanity. To think we are or even to think we can think without the body is nothing less than to deny being human.
There are many who reject the discourse of systemic racism, sexism, classism, cisgenderism, heterosexism, and how these forms of domination are shaped by power and are undergirded by hidden norms that profoundly harm people of color, women, those who are economically impoverished, those who are gender nonconforming, and those who are queer. Of course, these sites of power also overlap and amplify experiences of suffering. Define the meaning of ableism. How does ableism function as a site of domination and power? Indeed, what are some of the hidden norms that undergird ableism, that feed ableism such that it adversely and harmfully impacts disabled bodies?
The bumper sticker definition of ableism is discrimination against disabled people. It’s certainly a useful definition. But like all bumper stickers, it trades the laborious depths of reflection for an easy flash of insight. As I argue in my book, The Life Worth Living: Disability, Pain and Morality, ableism is in fact far more complex than first meets the eye. It’s also pervasive: It centrally organizes most social life. In chapter five, an analysis of theories of ability, I note that “if one looks to the ableist imaginary at least as it operates in the United States today, an idealized body confronts one relentlessly in advertising, fashion, and a host of other vehicles through which consumerism ever engorges itself…. In this framework, one takes absences to mark that which is not really/fully there and which, thereby, has less meaning or, even, no meaning at all. The person born with two legs is really/truly/fully human in a way the person born without two legs is not. An absence relative to the imagined ‘perfect’ form — a form that has ‘all’ the things present thought to constitute a thing as what it truly is — renders one incomplete. Ab-normal. De-formed. De-ficit. De-viant. Dis-abled. Humans often, all too often, desire this idealized presence, which is to say, humans desire in ways that run counter to the variability of our actual existence.”
As I define it, ableism presumes two things: (1) a “standard,” “normal” body; and (2) that disabled ways of being involve pain, suffering and disadvantage. Given both of those presumptions, to be disabled is bad, not desirable, and so on. More technically, the first presumption is ontological: It holds psychological and physiological norms to really exist sufficient to distinguish normality from abnormality. The second presumption is evaluative: It judges disability to be experienced similarly to, or always alongside with, pain and suffering. I call the latter presumption the ableist conflation. The task of The Life Worth Living is to try and understand why the ableist conflation has been made for millennia and across so many cultures and traditions. I don’t want to give away the punchline, but everything turns on the meaning of disability, pain, and, most fundamentally, ability.
I’ve written a great deal about questions of racial embodiment, especially within the context of Black embodiment and the power of the white gaze, which attempts to truncate and invalidate the integrity of the Black body. On this score, Black bodies are rendered “dangerous” bodies, “criminal” and “lazy” bodies. The white gaze is an historically habituated and distorted way of seeing racialized Black bodies. Of course, the process of white gazing isn’t an isolated activity, but one that is supported and shaped by myths, prejudices, lies and institutional material power. It is important that the white gaze is challenged, disrupted and dismantled. Describe what we might call an “ableist gaze.” How does it work? How might we dismantle it? I also imagine that there will be pushback from those who will argue that an “ableist gaze” is just a nonviolent, normative way of seeing the world. And, yet I suspect that is precisely the problem.
Similar to the white gaze, the ableist gaze is based upon an inverted world. It posits a “lack,” a “deficiency” in the other that is not only not there, but that is a direct result of an error and a fear on the part of the one looking, the one judging. Take an example from my own life. I grew up in an evangelical church in the Pacific Northwest, and my family would regularly attend the Sunday morning services. My brother and best friend, Jason, was born with cerebral palsy, muscular dystrophy and hydrocephalus. Given the way his particular bodymind worked, he required 24-hour care. Bringing him to church was a complicated task (not least of which because we went years without a vehicle that had a wheelchair lift), but we were able to do it from time to time. Upon entering the church, Jason would receive the same response from others over and over again: People wanted to pray for him. Most were praying for his healing. There is a lot to unpack here. People assumed him to be suffering and needing healing. That’s just false. He lived one of the happiest, least-filled-with-suffering lives of any human I’ve ever met. His seizures were indeed a problem — but often the prayers started without any thought to what he actually needed or wanted. The ableist gaze, looking at his uniquely shaped body in a wheelchair, simply assumed that his life was bad and needed “fixing” to become better or even worth living. I think many people were, unbeknownst to them, in fact praying for Jason as a way to exorcise their own fears of becoming disabled. They were praying for themselves at the altar of an idealized body.
Wow! The idea of them “praying for themselves at the altar of an idealized body” is so powerful, especially as they were thinking otherwise. Indeed, the idolatrous implications are not lost on me.
Joel, there is a way in which many of us who are “able-bodied” see ourselves as invulnerable, autonomous, and not to be grieved because there is nothing “wrong” with our bodies/minds or our mode of embodiment/cognition. Given this, we seem to notice what is “anomalous,” “strange,” perhaps “jarring” to our normative sensibilities of ourselves as “just fine,” “nonproblematic” bodies. Yet there is a way in which all of us are indexed to a future (or any moment for that matter) where we might be positioned, through aging or some accident, as disabled. How might thinking about just how vulnerable we are help us to understand disability?
This question is a tricky one. On one hand, “able-bodiedness” is a myth, a comforting lie many, if not most, people tell themselves. If you think long and hard enough about your life, I bet you’ll find that you have various impairments. You probably just don’t think about them under the umbrella of “disability.” So, yes, there is a general, broad sense in which we are all always already disabled in some way. This is further supported by the point you rightly make that if you live a long life, you will invariably become disabled in various ways due to the aging process. If you want to live a long life, you perforce want to become disabled in certain ways. The fact that that truth causes people cognitive dissonance is telling and demonstrates the ideological force of ableism in our individualistic, health-obsessed culture.
On the other hand, able-bodiedness picks out those not regularly experiencing discrimination on the basis of disability. As disability studies scholars have explored in great detail, it’s not just that there is a significant difference in lived experience between those who are judged able-bodied and those who are judged disabled — even within various disability categories, one finds massive variation. When one looks carefully at the lived experiences of people with, say, Down syndrome, infantile Tay-Sachs, paraplegia, Deafness (in a capital D sense), ADHD, type-1 diabetes, autism or multiple sclerosis, one finds enormous differences in how people move through the world, figuratively and literally, how they are judged, and, in short, what their lives are concretely like. In this light, to say that we are all always already disabled is ridiculous, perhaps even offensive, in the way it flattens out differing experiences of disability and ability.
Thanks for that distinction. For those who are “able-bodied,” they/we often feel sorrow or pity for those who are disabled, or even “inspired” by the achievements of those who are disabled. My sense is that those who are embodied differently, however, don’t need our sorrow or pity. How do we change the kneejerk reaction, for example, that communicates, “There but for the grace of God go I?” Also, what is it that reinforces that response? Within such contexts, we don’t get to hear from those who are embodied differently. We speak from an echo chamber that judges. And it is the judged who are further erased and rendered without agency or self-understanding. What appears to be a “compassionate” response is really a failure to critique such a response. If this is so, what should be our response vis-à-vis those who are said to be disabled?
Disability activists and scholars have long railed against pity. “Piss on pity” is a slogan used across the globe for decades now. The other side of pity, of course, is inspiration. Inspiration porn, as it’s called, is everywhere once you know how to look for it. A local news team reports that someone with Down syndrome goes to prom and the entire framing will be: “Wow, look what they did!” A TED Talk is structured around someone with disabilities “overcoming their disabilities” with the punch line that “if I could do this, imagine what you could do!” Both pity and inspiration are fundamentally extractive and dehumanizing. They flatten out the actual lived experience of people and result in an affective surge that runs from the object of pity or inspiration to the subject. Disabled people don’t need your pity or charity, and we don’t exist for your inspiration. What we do need is action to make the world more accessible, to provide better social services, to undo eugenics legacies of discrimination and exclusion, etc.
As a disempowering and profoundly harmful (even deadly) hegemonic structure, ableism must be contested and overthrown. Because there are so many dominant structures that harm and deny our humanity, that attempt to stigmatize, marginalize and eliminate our complexity, I would like for you to speak specifically to how you envision a post-ableist world?
A post-ableist world would be one based not on equality and liberty, but on equity and interdependency. A post-ableist world would be centered on care for and solidarity with all — and not just all human others, but non-human animals, land and ecosystems, and the Earth as a whole. This is decidedly not a variation on Karl Marx’s famous dictum, “from each according to his ability, to each according to his needs.” In many ways, it is an explicit refusal of that way of organizing social life, for abilities do not inhere in individuals; abilities are functions of relationships as shaped by access. On a genuine communitarian ethic: from all according to our interdependence, to all according to our needs.
Call this way of thinking ability as access.
On the one hand, conceiving of ability as access is obvious, if, that is, one takes the time to reflect on the nature of ability. On the other hand, ability as access is radical and revolutionary, an idea that could change human society entirely, if only we let it.
This article has been lightly edited for clarity.