The Hands That Haunt Us: When Did Disability Become Consent?
You will remember, in fact, the first doctor who does ask, who says ‘is it okay if I put my hands here,’ gesturing, waiting for you to say ‘yes.’
A presidential candidate touches a disabled voter on the face as he answers a question, with no pause to determine if such contact is wanted, and as the disability community recoils, furious, reminded of how the public thinks it has authority over our bodies, and nondisabled people race to make excuses.
“I know disabled people,” someone says, “and they don’t mind.”
We do mind. We mind very much. We mind that no one provided us with the vocabulary and the authority to refuse this kind of disrespect when we were growing up, that we are treated as though we do not deserve to decide who should touch us and when, or how. We are denied the right to consent or to withdraw consent. The people violating us don’t mean any harm, people tell us, whether they are rough-handed sexual assault response nurses hurrying through an exam or floorwalkers at the department store jamming our arms into ill-fitting coats.
“They’re just trying to be friendly. They’re just trying to take care of you. It’s so hard for them. Stop being so uptight.”
Stop being so uptight.
People repulsed by the need for care tell you that surgery itself is a violation—insides on the outside, hands slashing with knives and clumsily stitching back afterwards as though you won’t notice the parts of you they broke to fix the parts that are broken. But they are wrong. Pre-op is where the people who say they are there to care for you pick you apart, where you cease to be human and transform yourself into an instrument, a teaching tool, a block of flesh. The hospital tells the people who enter the room that they must scan the barcode on your wrist before introducing themselves, few considering how unsettling it is to be wanded before someone says why they are there, what they want. The hand of a nurse, an orderly, a doctor is on you, grasping, and all that follows is because of that, the casual assumption that the barcode is consent.
Whoever walks into the room on whatever business will ask you why you are there—“what are we doing today”—a safety check, but even as you speak, their eyes flicker onward. The most hesitant of your questions, reminders that you know your body better than they ever will, are met stonily. Sometimes there is interest from the residents, but before they can speak, they are swept from the room. Patients to see, things to do. “We’ll see you in the OR,” they say, and it reminds you not of care but your days working in a commercial kitchen, where one of the cooks could break down a rack of ribs in seconds, with eerie precision.
When they leave you alone for a moment, your heart lurches with panic.
Did you even sign a consent form, in the myriad of paperwork you had to fill out?
Consent, say the protesters in the streets with the signs, the hashtags on Twitter, is your right, but disabled people know the truth: It is fungible, slippery, easy to cast aside. In some corners, it is an impossible dream, when lack of consent is a condition for staying alive. And that sets the stage for something darker. Disabled people are much more likely to be sexually assaulted. In the intellectual, developmental, and cognitive disability community, you can be hard-pressed to find people who have not been sexually assaulted. We are much more likely to experience physical abuse. Filicide is rampant. Most of the people who rape and beat and torture and terrorize us are known to us. Our “caregivers” can be rapists and abusers and killers. People trapped in institutions are much more likely to experience these injustices; abused so systemically that one historic argument for forced sterilization of disabled people who can become pregnant is that if they’re raped in institutions, at least they won’t get pregnant. Today, some push for sterilization as if it will prevent sexual assault rather than hide evidence of its occurrence.
We are objectified for the simple reason that people didn’t consider us human to begin with. There is a direct line between the scrub nurse who turns my arm to look more closely at my tattoo with the same impersonal, perfunctory gesture you would use to turn a can of beans to read the label and the institutionalized Jane Doe who was pregnant for nine months before anyone noticed, when she went into labor.
Nondisabled people—strangers in restaurants, friends, health care professionals, employees working the floor at stores, airline staff—move our mobility devices without consent, even when we are using them, take up forks to feed us when we are doing just fine, slop wet, infectious kisses on our cheeks as we sit waiting for our planes. It is all so routine, so endless, the reachy kisses and paddling fingers, that the exceptions to the rule are almost startling; the flight attendant who keeps her hands politely at her sides as she asks if she can take my cane to stow in the closet, the dental hygienist who describes what she wants to do before she does it, the nurse in the recovery area who asks if I would like help drinking my ice water instead of shoving the straw in my face.
Nothing at the teaching hospital feels out of the ordinary. You consented, after all. Not when you signed the formal consent forms for your surgery (you did, you did sign them, they are in your chart), but when you entered the land of the cripples, where people lay their hands on you like you are an instrument, a piece of furniture, a can of beans. You will think about this in pre-op as you wait to be called, hands everywhere, voices at the nurses’ station murmuring about bad dates and the dressing change in room four, and when your moment comes, you will walk into the OR, unsteady, Versed drifting through your body, spaces distorted and strange, sounds muffled.
“How are you doing,” the anesthesiologist will ask, but only in the perfunctory tone of someone assessing whether you have gone to sleep yet, and then you will, and whatever those crawling hands do, you will never know, waking up to stitches and pain and promises that the work is done. You will be shivering uncontrollably, setting your IV lines swaying, but when the nurse says the anesthesiologist did not write orders for Demerol, you will not ask again. You wouldn’t want to come off as uptight.