In this political moment as hate violence is on the rise, Trump is trying to ban Muslim refugees from the country, and the Attorney General has blamed disabled students for the lack of civility and discipline in public schools; so many groups of marginalized peoples are being treated as unworthy and disposable, essentially denied full personhood. The following meditation on personhood is excerpted from my newly released book, Brilliant Imperfection: Grappling with Cure. I wrote it thinking about white disabled woman Terri Schiavo, who died over a decade ago after a well-publicized and protracted legal struggle over ending her life. But I could as easily have been writing about significantly disabled Black lesbian teenager Jerika Bolan, who after expressing a desire to die wasn’t provided counseling and community support. Rather she was allowed to commit medically sanctioned suicide six months ago. Or I could have written about the unnamed Salvadoran asylum seeker, who in mid-February collapsed at a Texas ICE detention center, was taken to a hospital, diagnosed with a brain tumor, and then in the midst of treatment forcibly taken back to the detention center. If Jerika Bolan had been granted full personhood, she’d still be alive; if the Salvadoran asylum seeker had been granted full personhood, she wouldn’t be locked up in a detention center. More than ever, I believe personhood can be used as a weapon.
Some of us are granted personhood as our birthright, but others are required to prove and defend it every day. And when we fail this perverse test, we’re in trouble. Listen. I want us to remember Terri Schiavo. Debates about her raged in the news in 2004 and 2005.
Whatever happens after we die, our body-minds composting back to earth and air, I hope it’s more peaceful than Terri Schiavo’s last few days as she died of dehydration. Everyone — her parents, her husband, her doctors, the media — had an opinion about her and the feeding tube that had just been removed from her stomach.
She was a white woman who collapsed one day, her body-mind changing radically in a matter of minutes as oxygen stopped flowing to her brain and then started again. Some say she lost her ability to communicate, to think, to feel. Or perhaps we lost our capacity to listen. We’ll never know what floated beneath her skin. I want us to mourn for her.
Pundits and reporters, activists and scholars have written about her endlessly. I don’t know why I’m adding to their pile of words, except my memory of her won’t leave me alone.
She was a heterosexual woman whose husband decided she’d rather die than be disabled. Her hands curled, stiffened, joints freezing into contraction. He asserted his patriarchal ownership, refusing to let nurses slide rolled towels into her hands to help loosen her muscles. Nor would he allow them to teach her to swallow again, even though there was every sign that she could. He spent all his court-awarded settlement money on lawyers rather than care, comfort, and assistive technology. What words or fluttering images did she hold in her muscles and bones?
So many people surrounding Terri Schiavo assumed that she knew and felt nothing. Over and over again neurologists, journalists, judges made decisions about her body-mind based on the beliefs that language and self-awareness make us worthy, that death is better than disability, that withdrawing the basic human rights of food and water can be acts of compassion.
I could ponder self-consciousness, spiritual connection, and the divide between human and nonhuman. I could argue with the bioethicists who separate humanness from personhood, declaring pigs and chimpanzees to have more value than infants and significantly disabled people. But really, I’m not interested. I want us to rage for her.
She was a woman living in a hospital bed, referred to as a vegetable more than once. Did she lie in a river of shadow and light, pressure and sound? That too, we will never know. When she died, did we call her name?
Body-minds have value. Certainly I mean our own human selves, but I also mean heron, firefly, weeping willow. I mean dragonfly, birch, barn swallow. I mean goat and bantam rooster, mosquito and wood frog, fox and vulture — the multitude of beings that make home on this planet. I mean all body-minds, regardless of personhood.
She appeared to track the motion of balloons across her hospital room and grinned lopsidedly into the camera. Her life hung between a husband who said one thing and parents who said another, between legal pronouncements and diagnostic judgments. Do we remember her? I don’t mean the editorials, the pro-life versus pro-choice rhetoric, the religious and secular arguments, the political protest and vigil staged outside her hospice, the last-minute drama as Florida’s governor Jeb Bush and the U.S. Congress tried to intervene. I mean: do we remember her?
Too many of us acted as if Terri Schiavo’s body-mind stopped being her own. Depending on who we were and what stake we had in her life or death, we projected our fear, belief, hope, disgust, love, certainty onto her.
I’m trying to say that life and death sometimes hangs on an acknowledgement of personhood. Trying to say that personhood is used all too often as a weapon. Trying to say that while personhood holds tremendous power, its definitions are always arbitrary. Trying to say—I stutter over the gravity of those words.
Copyright Duke University Press, 2017. To order Brilliant Imperfection from us at a 30% discount, enter coupon code E17CLARE at checkout.