Disability and Hermeneutical Injustice
In May 2015, the young philosopher Elizabeth Barnes did something people at an early point in their careers rarely venture: she publicly admitted to being infuriated by her peers. Barnes, who has a connective tissue disorder called Ehlers-Danlos syndrome, noted in an impassioned blog post that she had heard other philosophers breezily discount the quality of life of the disabled again and again, as though it were supremely obvious that a disabled life is worth less than a non-disabled life. “It’s an odd thing, a hard thing, to try to take these emotions and turn them into interesting philosophy and careful arguments,” Barnes wrote. “My first reaction isn’t to sit down and come up with carefully crafted counterexamples for why the views I find so disgusting are false. My first reaction is to want to punch the people that say these things in the face.”
One shouldn’t expect professional philosophers to be any more ethical than the general public, but I suppose we’d like to think they do, at the very least, challenge their own unexamined premises more than the general public does. It is a mark of how deeply ingrained prejudice against the disabled runs in our society that Barnes was left in such incandescent frustration by men and women—in all likelihood mostly men—who have spent their entire adult lives fussily disassembling arguments about the Big Questions.
At roughly twenty percent of the population, disabled people are America’s most underrepresented minority, relative to their size, in our ongoing kludge of a conversation about justice and opportunity. And it isn’t for lack of urgency. Judged by market income, about half of all disabled adults are in poverty. By the metric of disposable income, which includes Social Security Disability and Supplemental Security Income, the figure is almost one in three. Only 92 out of the 425 subway stations in New York, the epicenter of this country’s cultural life, are wheelchair-accessible. Just one percent of rental housing meets all the criteria of basic accessibility for disabled people. In the aggregate, disabled people can’t help but see “No” stamped across the American landscape in what often seems to be indelible ink.
While many people were swift to condemn Donald Trump’s mockery of a disabled reporter during the 2016 campaign, few made the connection between Trump’s likely priorities and the grim material reality of being disabled in the U.S. Fewer still pointed out that the largely symbolic controversy surrounding Trump’s ridicule was the most attention anyone had paid to the disabled community in a national election in a long time.
Communist Kerala, capitalist Carolina
I was born in Kerala, the state on the southwestern tip of India that borders the Arabian Sea. Along with West Bengal, Kerala can claim to be the beating heart of communism on the Subcontinent, and by many statistical indicators (literacy, life expectancy, the female to male gender ratio) it provides the highest quality of life for its residents. But not even decades of a robust left-wing politics were enough to get the government to adequately consider the needs of the disabled. When I developed a neuroblastoma at seven months old, I became paraplegic. My parents realized the environment would be hostile for me, with the upshot that we were sent into de facto exile when I was three. I grew up in Greensboro, North Carolina, having arrived two years before the Americans with Disabilities Act (ADA) was passed.
I was an upbeat kid, and by the time I was eleven the world seemed like a place whose unexplored margins could be charted with the right mix of effort and patience. I had two parents who made me feel safe, friends in the neighborhood and at school, and a lot of curiosity about everything in my textbooks. I fortunately didn’t have a good grasp of politics, which would have dampened my outlook. That year would see the passage of the Personal Responsibility and Work Opportunity Reconciliation Act. Welfare reform gave President Clinton license to change SSI (Social Security) eligibility requirements. He took the opportunity to modify the rules so that 135,000 poor disabled children would no longer qualify.
In the years since, liberals (of both the progressive and libertarian varieties) have not given enough thought to what they should say about how public policy affects the disabled. For progressives, the grim material reality of life with a disability requires a daunting examination of how money and resources can alter a person’s prospects over an entire lifetime. But the managerial approach to policy in vogue with the upper echelons of the Democratic Party is ill-suited to thinking in terms of systematic change. There are plenty of intelligent people on the left who realize this is a problem, and yet dethroning the flinty technocrats who all went to the same ten or fifteen colleges is no less difficult now than it was before the November election.
Libertarians face a different set of obstacles in addressing the disabled. Like the philosophers who raised Barnes’s hackles, libertarians pride themselves on confronting the truth without flinching or sentimentality. But also like philosophers, the homogeneity of libertarians permits them to take for granted many assumptions about how the world works that emerge out of a lack of testimonial evidence from people of different backgrounds and an overconfidence in the ability of raw intelligence by itself to surmount all challenges.
The minority body and the liberal paradigm
The Minority Body: A Theory of Disability is Barnes’s attempt to add disabled people to the polyphonic exchange that creates our norms and policies. Progressives and libertarians ought to read it if they want to improve their understanding of what disabled people have to offer society. Barnes’s thesis is that the common view of disability as a tragedy to be overcome is mistaken. Disability is more like being gay or being a woman: complicated as a result of social stigma and some aspects of the condition itself (more trips to the doctor, for example), but on the whole neither better nor worse than alternative ways of being embodied. Disability, Barnes maintains, is neutral with respect to well-being. In 187 pages, Barnes addresses several different theories of well-being in the philosophical literature, draws attention to how disability is constructed by social perceptions, and makes the case for pride as a corrective for shame and ostracism.
Liberals should pay particular attention to chapter four, which Barnes devotes to the importance of firsthand testimony. She draws on the work of Miranda Fricker, whom she credits for delineating the concept of hermeneutical injustice. Barnes summarizes the idea:
In cases of hermeneutical injustice, we harm people by obscuring aspects of their own experience. Our dominant schemas—our assumptions, what we take as common ground—about a particular group can make it difficult for members of that group to understand or articulate their own experiences qua members of that group.
This attenuates the impact disabled voices can have on our politics in the realms of fairness and interpersonal respect.
In discussions about inclusion, political liberalism’s quarry is incorporating groups into a previously negotiated arrangement. The through-line connecting progressives and libertarians is a commitment to procedural neutrality about what constitutes an adequate comprehensive moral perspective for individuals. Like the proverbial watchmaker god of deism, liberalism prescribes parameters, not ultimate outcomes. Unfortunately, hermeneutical injustice throws a monkey wrench into the works. The rules have been established, and once that power has been exerted, nothing can compensate for being left out of the initial discourse surrounding goals and values. No one ever begins conversations about healthcare, education, employment, etc. by soliciting input from disabled people relative to their size in the overall population. This creates a lopsided epistemic situation where disabled people are left trying to assimilate their experiences into a dialectic that has implicitly stipulated that their way of seeing the world is a deviation from the normative mainstream. Barnes quotes Fricker:
What is bad about this sort of hermeneutical marginalization is that … it will tend to issue interpretations of [the marginalized group’s] social experiences that are biased because insufficiently influenced by the subject group, and thus unduly influenced by more … powerful groups (thus, for instance, sexual harassment as flirting, rape in marriage as non-rape, post-natal depression as hysteria, reluctance to work family-unfriendly hours as unprofessionalism, and so on).[1]
Discussions about how to think of disability and the appropriate policy responses, if any, have been going on so long without significant feedback from the disabled that it passes without comment when a pattern of negligence emerges. The libertarian Cato Institute, for example, defended Betsy DeVos against critics who worried about her willingness to stick up for disabled students on the grounds that she was in favor of school choice. The think tank also calls for the elimination of the ADA. Cato doesn’t cite any opinion polling among disabled people about the merits of this hypothetical repeal. That need not be a fatal error. It could, of course, turn out that the weight of data vindicates this stance, but the failure to accentuate what disabled people think about the most extensive piece of legislation concerning their lives is troubling.
The New Republic‘s Sarah Jones, who has a genetic disease that causes problems for her red blood cells, recently surveyed the increasing uncertainty of life as a disabled American. Her words illustrate the distance between typical disabled people and libertarians who favor repealing the Affordable Care Act (ACA):
On the night of Trump’s election I did not sleep. First I thought of my brother, who only has health insurance because of the ACA. Then I stacked questions on top of hours: Should I wait four to eight years to have children? Or do I gamble? And I didn’t know the answer. I still don’t know the answer.
The institutional minefield disabled people face is so fraught that it has left some of us with this awful dilemma. That would be bad enough by itself. But this anxiety didn’t appear out of thin air. The politically powerful—Bill Clinton, Donald Trump, Betsy DeVos, Tom Price—have advocated or implemented policies without internalizing the experiences of the disabled. These policies, in turn, encroach upon the sleep of the disabled. And the more we worry about being excluded from the dominant narrative of disability, the harder it is to make sense of ourselves. This is how unfair policymaking leads to hermeneutical injustice, which in turn leads to more unfair policies.
Of course, like people of almost every political stripe, libertarians think the measures they prefer would benefit people in all segments of society. But once you scrutinize their rhetoric, you realize it contains an enthymematic appeal to a sort of person whose virtues are meant to be a bulwark against the need for a large welfare state or intrusive paternalism. The ideal citizen of the libertarian republic is someone who minimizes the demands he or she places upon neighbors and the government. Disability—unlike race, gender, and sexual orientation—is an identity that has been accompanied by marginalization not just because of contingent power imbalances, but also because the disabled body itself is at odds with this powerful American archetype of the self-sufficient creator and innovator. In order to fully integrate disabled people into American life, libertarians need to jettison their ideal of the independent Promethean adventurer, which is so removed from how the vast majority of Americans—disabled and non-disabled alike—actually experience their time on this planet.
This will prove hard. Libertarians have a fractured perspective about the sort of country we live in. For example, organizations like Cato have been consistent critics of mass incarceration, the war on drugs, and the erosion of civil liberties. At the same time, Cato—and libertarians in Washington more generally—find it instrumentally useful to give their arguments a starchy fusionist inflection. “The Cato Institute is the foremost upholder of the idea of liberty in the nation that is the foremost upholder of the idea of liberty,” George Will enthuses on Cato’s Facebook page.[2] That Cato’s own 2016 Human Freedom Index put the United States at 23, behind Denmark, Sweden, and Norway—nations well known for their cradle to grave welfare states—suggests this is mere marketing, inconsistent with their stated principles.
“It’s easy to confuse the view from normal with the view from nowhere,” Barnes writes. “And it’s uniquely the minority voices which we single out as biased or lacking objectivity.” Kerala’s communists and Washington’s libertarians won’t agree on much, but they are both complicit in hermeneutical injustice in ways that have had life-altering consequences for me. The first step for remedying the flaws in both groups should be to listen more. They have plenty to learn, and we with minority bodies will never exhaust what we can teach.
So where to begin? Liberals can take heed of Barnes’s emphasis in her final chapter on the importance of disability pride. The progressive knack for empathetic storytelling about marginalized communities on TV shows like Transparent and in films like Moonlight ought to dovetail well with participation in unapologetic events like the Chicago Disability Pride parade, the largest celebration of disability in the world. As for libertarians, they, too, have admirably acquitted themselves in recent years when it comes to removing shame from bodily taboos, especially those surrounding sex work and drugs. They thus have a blueprint to extend their concern to policies affecting the disabled: demystify what’s going on through conversation with the subordinated parties, identify how the government exacerbates the problem, and try to excise unwarranted prejudice. Edward Carpenter, one of the Victorian era’s great radical exponents of liberation, gave us the right ideal to strive for:
I conceive a millennium on earth—a millennium not of riches, or of mechanical facilities, nor of intellectual facilities, nor absolutely of immunity from disease, nor absolutely of immunity from pain; but a time when men and women all over the earth shall ascend and enter into relation with their bodies—shall attain freedom and joy.
Featured image is of the first Disability Pride Parade in New York City. UN Photo/Devra Berkowitz, 13 July 2015, United Nations, New York, Photo # 637974.
[1] Fricker, Miranda (2007) Epistemic Injustice. Oxford: Oxford University Press. As cited in Barnes (2016), p. 171.
[2] Access date: April 27, 2017.
