Disability and Erasure : charity, power and perversity

Why aren’t we outraged by ableism? No, I ask with genuine curiosity because it doesn’t make sense to me. We are collectively irked by panels composed entirely of old white men, yet when we see a panel comprised only of the able-bodied no one bats an eyelid. It can’t be a numbers thing. There is anywhere between 1.3 and 2 billion people living with a disability globally so unless we tacitly agree that 2 billion people are not worth our outrage, then we really ought to ask why we don’t talk about the low representation of persons with disabilities in boardrooms, in our high schools and universities, and on the sets of romantic comedy shows.

For a while, not very long, I postulated that perhaps the instance of disability must be lower in the countries where I have lived. In these cities, in these countries, disabled people must be a super-minority, so remarkably few that any outrage at all would seem an over reaction. Even if that were true, the inability to be moved by what is really an injustice isn’t consistent with the moral track record of persons who put social justice as a passion on a CV or tinder profile. Many people fight for representation of black people in the United Kingdom even though they make up a mere 3 percent of the UK population. There should be no percentage threshold for outrage and protest. I should hope that people speak up against injustice simply because it is right to do so. End of story.

So I ask again. What do the feminist movement, the racial justice movement, have that the fight against ableism doesn’t?

I could be wrong, but visibility might have something to do with it. We see women on the bus, on the street, on our television screens, so when we don’t see them in the boardroom, or on a panel, or on a new list on Forbes, it is remarkable to us. The same is true for race. I see Asian people serving food in the cafeteria, mixed race people tossing a frisbee, black people hugging their family members at the airport, so when they aren’t in my Oxford lecture hall, I know that there is something wrong with this state of affairs. That it isn’t a true reflection of reality.

Disability justice does not have the same benefits of visibility. In an exquisitely written review of the film The Shape of Water, disability justice advocate Elsa Sjunneson-Henry writes, ‘[the shape of water] reinforces the narrative that [people like me — people with disabilities] belong below the surface, to be put on display when the narrative suits.’ Elsa valiantly claims that as a disabled person she deserves to be where the people are, in the expansive light of day, where she can experience the full range of a human emotion with its crests and troughs. I was shamed to read her words because I am guilty. It is I, it is we, who have crafted a society where other people have to ask for their humanity to be recognised, as though it is something for us to grant.

Ableism insists that the world is created for the able-bodied; that we own our place on this planet. People with disabilities are the strange guests we let in to our homes, and as is common with strangers, they bring with them foreign idiosyncrasies, requiring our accommodation. Like good hosts, we comply. We build ramps for them. We find accessible vans. But we do so grudgingly, making these services so few, so exorbitantly expensive that our accommodations are more gesture than sincere effort. We make so many films with disabled characters who dream of running in open fields, of singing on a stage with their voices coming from their mouths, of seeing through their eyes: characters who consider their existence as disabled persons unnatural. I remember watching Me Before You with Eddie. I’d seen the film alone before, and by the end, I had come undone, crying inconsolably as the character played by Emilia Clarke read a letter from beyond the grave outside a Parisian cafe. I expected the film to move Eddie as it had me, but there was not a single tear on his face. He grimaced, and rolled his eyes and eventually he begged me to make it stop.

“Why must he want to die?” he said, “How am I meant to watch this, when as a person who uses a wheelchair like this man, I have no dreams about skiing or running in Paris. My body, this wheelchair, this intimacy with pain, this is all I have ever known. This is a life as well. It is a sad life because able bodied people make it so.”

An ableist society insists that disability is a failure of biology that one ought to overcome. Disabled people, failing to fix themselves with the alchemy of modern science, have to dream of a normal life but settle for a wretched one. We, the able bodied, disappear from the analysis completely. Systemic exclusion becomes a crime without a perpetrator, no matter that we created the world in our own image, to assist us while letting us believe that we go about our days unassisted.

Alas my outrage and shame, as genuine as they may be, are something of a vanity. They mean nothing if knowing what I know, I still choose to live in a house that is not accessible. If I still continue to hand over my hard earned currency to establishments that do not care to be inclusive. If I still choose to vote for a president who publicly ridicules someone with a disability. The ‘I’ there is a collective one, meant to highlight the facility of the able-bodied to be moved by suffering, but never moved enough to give up their own comforts.

I ought not to be shocked by the abysmal representation of disability in public discourse and public space. It is our communities who have chosen to confine disabled people to the back rooms instead of insisting that they walk the streets amongst us. And when they insist on walking among us, when they resist the tide that forces them out of sight, we punish them for it. We curtail their agency and insist that they live a life so confined that it can only be prison in another form. I remember trying to convince a person, let me call them Thomas, to contribute to a fundraising effort to assist my friend Edward. ‘But I can’t support him when he talks about wanting Tom Ford and having brunch at Browns’, was his objection to providing support of any form. Would he have given support to Eddie had he worn distressed trousers, spoken in low apologetic tones, and insisted that he’d subsist only on sausage rolls? I won’t ever know, but his comment captured the perversity of charity.

Charity, I am finding, is as much about the exercise of power as it is about moral goodness. When we offer assistance, we do so for people who we expect to be at once infallible and pitiable. We want people with disabilities, refugees, low income students, to live lives free from human vices of impropriety, short termism, and the occasional want of frugality. These faults, it would seem, have to be a privilege of the able-bodied, the documented, and the wealthy. How can you be a refugee and have a drinking problem? How can you be disabled and be a shopaholic? How can you be a low income student who also wants to indulge in makeup? Now, I do not mean to endorse impropriety. Not at all, but generosity cannot be earmarked, not least if it is meant to be in the service of moral imperatives like justice. Refugees don’t owe success in exchange for a bed to lay their head. People living with disabilities don’t owe the ‘charitable’ similar success stories. They don’t owe them frugality, patience, good humour or unending appreciation.

We also expect those who suffer to diminish themselves in order to merit our generosity. How dare Eddie eat brunch at Browns? Then he’d be too much like us, the charitable, and how are we to be generous if there is no power asymmetry? We give our aid to pat ourselves on the back because we are lucky, our lives are better, and their sparkle is enhanced when they are viewed side-by-side with the suffering of others. Nowhere is this more clear than in fundraising posters plastered outside my local Sainsburys. Help Tom reads the note that a boy with a sullen look and hollow eyes holds up. Tom’s life has to be reduced to pixels of misery put in display this way. He has to have dark rims under his eyes, an uneven blush over his pale skin. He has to be robbed of that tiny joy of saying cheese as they snap his photo. The people responsible for this wretched display know that people wouldn’t want to support homeless children if they were captured smiling and kicking cans in the outskirts of London. That joy would betray their suffering. It says that they are too similar to us, that we do not have power over them. The same argument holds for the objection to supporting Eddie if he has a taste for Tom Ford sunglasses. That desire for frivolous spending makes him too similar to the Thomases of the world. Realising this, Thomas chooses to turn a blind eye to the systematic exclusion that has ensured that many people with disabilities, like Eddie, succeed or fail at the whims of the generous. He chooses to punish him for not being pitiable.

I have possibly used too broad a brush to paint this argument, but caveats bely the truth. That on the whole we don’t care enough, and we should. Ableism is a structural force that we should all want to dismantle. Visibility is a necessary first step in that direction, but it is only part of the puzzle. Chimamanda Ngozi Adichie, when asked in an interview with Zadie Smith if she valued representation of black women in the patriarchal sexist renderings of women fashion magazines said, ‘Yes of course Zadie! I want the faces of black starving women in the fashion magazines alongside the white ones, because at least there are black faces. We’ll talk about the patriarchy when the black women are already in the magazines.’ Her reply, cheeky and obdurate, made sense to me. Representation, even when intended purely as tokenism, means that the door is pried open ever so slightly ; when the president of the student government wears a fresh coat of lipstick, and wheels in and out of meetings. When a protagonist on a well funded television show walks her guide dog to set, your imagination about who can be your boss or who could be your love interest, changes. Having just that one person is powerful, even if only as a rhetorical tool. When companies stop hiring folks with disabilities, when film makers continue to pass over disabled actors for able-bodied actors to play them on stage, then we call out the lie that these decisions are about constitutional things like competence and talent. After all we rejoiced under Eddie’s presidency disability notwithstanding.

Once disabled people are visible, then we ought to empower them and redress the effects of terminal subjugation. Empathy is a conceivable way to accomplish this, but I am becoming increasingly suspicious of empathy. Empathy is its own ruse. One empathises to get a sense of the suffering of another, but this understanding is futile if it is not followed by the ceding of power. Much fuss is made about the difference between empathy and sympathy; empathy is meant to be a superior propensity. I struggle to distinguish between the two because the result of both is the same. The powerful get to keep their power. They ride on inspiration from having engaged in an ethnography of suffering for a couple of weeks. While on this high, they may fundraise or volunteer, and maybe even write about marginalisation incessantly as I am doing here. Sooner or later though, the fervour fades, and they go back living the lives where they reap the privileges of a life built for their convenience. The world continues unchanged. The marginalised continue to be marginalised. When we push for empathy, we place an emphasis on recognition but we rarely examine our relative positions as the ones whose bodies the world privileges. We never see in this rift something egregious enough to require an active divestment from the business-as-usual approach that is costly for people living with disabilities. Instead of empathy, why not pursue identification, not only with the exclusive systems, but with our role in reinforcing them. This identification pushes us to be more honest — to say actually I do not care, when it is what we mean. And if we say we care, it requires that we know that caring demands more than a one-time donation, or our outrage chronicled on blogs all over the internet. It requires that we inconvenience ourselves for the benefit of others.

It is in doing the work of identification and ceding power that I am particularly interested. What might it look like to move beyond empathy? I rarely have the answers, but perhaps in these times where certainty is currency, asking the questions still has a room, however small.