How We Look at Disability

«Dear Jean, why does the way we look at disabled people change so slowly?» asks Julia Kristeva. «This is an epochal shift we're being asked to make, because it touches the very idea of what it means to be human.» We are separated by walls, Jean Vanier answers, walls we erect around our hearts to keep the other—anyone different—from entering us: «Those walls rise up inside me, before someone who troubles me, who threatens my freedom, contradicts me, holds certainties or impulses different from mine.» The look Vanier and Kristeva describe in their book *Their Gaze Pierces Our Shadows* (2011) is the look of a new humanism, of a natural right we must reinvent, step by step. Literal step by step. It is from the glances I catch walking with Massi that I understand, over and over, how much disability disorients and frightens people. In the 2001 Dresden exhibition *Der (im)perfekte Mensch* (The (Im)Perfect Human), organized by the German Hygiene Museum, researchers identified six principal ways of looking at disability: the amazed, clinical gaze; the annihilating gaze; the pitying gaze; the admiring gaze; the instrumental gaze; the exclusionary gaze. I would add a seventh: the relentless stare (which Massi endured his first ten years) to determine whether the person really has something wrong. The most unpleasant is the pitying gaze. But what the list—and real life—lacks is the natural gaze: sometimes complicit, sometimes smiling, sometimes simply distracted. Still, given how complex the problem is, I'm not sure blanket guilt-tripping helps much. Sartre said we cannot resent what others think of us because we made them think it. And quite likely, our own gaze sometimes reflects discomfort, fear, overprotection, resentment, or bitterness. Small wonder if someone meets that stare and looks away. Iacopo Melio—who calls himself "born privileged"—drafted a kind of manifesto on the correct language of disability, hoping to clarify once and for all how we should relate to it. «Rule one: disability is not an illness but a condition in which we cannot do something, partly surmountable if we provided the right tools (a wheelchair, a computer, an elevator, an aide). For this reason, every word—every image—that frames disability as suffering, pain, limitation, or incapacity is absolutely forbidden. Rule two: we must stop seeing and portraying people with disabilities as special or heroic. Those words are the height of pity and condescension, the best way to discriminate against someone who wants to be treated simply, naturally, like everyone else. It is right to say: Nothing. Absolutely nothing! Rather than making a big deal of someone's 'condition,' treating their smallest gesture like some great feat worthy of a pat on the back (which is the most annoying thing you can do), treat them exactly like anyone else.» We should ask Iacopo to draft a manifesto for how we look as well. I would suggest starting here: the gaze of simple curiosity—the kind people answer naturally. What's your name? What happened? How do you live? Is it really a tragedy? Massi, no tragedy. Hard work, yes—like everything. No romanticizing disability, but there are so many more good things than bad. Starting with the people around him. Massimiliano, without meaning to, filters out the ones who don't belong. The ones who stay are a gift. But what comes next? That's the real worry. We'll figure it out though, and if the way people looked at this changed, it would all be easier. There is so much to do, so many harmful prejudices to undo—all of us together. Knock, and the door will open. Look at each other with compassion, and everything becomes simpler.