Portal de Periódicos da CAPES

Love

2014; Duke University Press; Volume: 29; Issue: 4 Linguagem: Inglês

10.1215/08879982-2810098

2164-0041

Eli Clare,

Reproductive Health and Technologies

Let me lay it down. I am furious with you — you who are known in the media only as the father of a disabled girl you call Ashley. You say she has the consciousness of a three-month-old. You chose a surgeon to lift her six-year-old uterus out of her body, another doctor to slice her breast buds away, and an endocrinologist to flood her with estrogen. Together they froze your daughter’s body in time, making her a perpetual child. The ethics committee at Seattle Children’s Hospital supported your decisions. You call Ashley your “pillow angel.”In spite of my fury, the questions I have for you are all about love. You say that you love your daughter very much and that love motivated all your medical choices. Let me try just for a moment to trust your love, to accept the terms upon which you made your decisions. You wanted to protect Ashley from the discomfort of menstruation and large breasts, the damage of sexual assault, and the risk of pregnancy. You wanted your daughter to stay small so that you could more easily take care of her, keep her safe and happy. You and Ashley lack a shared language, and she quite possibly lacks the ability to process and use words. She couldn’t tell you what she wanted with her body, couldn’t have a voice in these huge medical decisions, and so you decided out of love. But love is not unassailable. Let me ask: how is a father to love, nurture, and protect his disabled daughter who has no language and no way to walk or roll through the world on her own?I know women who can only move one finger, women who operate their wheelchairs by sipping and puffing, women who never leave their beds, women who speak with computers or alphabet boards or not at all, women who lost all their words at age seventy, women who never had words, women who as girls were thought to be without communication. Busty women, bleeding women, women — all disabled — who stay safe, comfortable, and happy. Does love mean reshaping your disabled daughter’s body so she will never stretch into womanhood?You claim that Ashley has the emotions, psyche, spirit, and selfhood of a three-month-old. She has a condition named with some long Latinate word I can’t wrap my slurring tongue around. I recently learned that her disability is also known as cerebral palsy, which means she and I faced the same crapshoot at birth, a simple matter of which brain cells died when. I know that you say that this medical treatment — “Ashley’s treatment,” as you’ve dubbed it — is meant only for “profoundly” disabled children, and that those of us with less significant disabilities shouldn’t be fearful or outraged. You don’t mean to inflict this treatment on those of us who can walk or roll, or who have language to communicate about abstract concepts. Let me not question your assessment but instead return to love. Does love mean defining Ashley’s consciousness, however you and her doctors quantify it, as not needing a growing, shifting, aging embodiment?However much you argue, I see my body in Ashley — her tense and wiry arms, taut neck, and lopsided smile. I see her crip beauty. I didn’t walk or talk for a long time. The difference between your daughter and me is slight, the crapshoot of brain damage. I’ve not been able to read the news stories, your website, the medical articles, the opinion pieces. Your story is too much, too close. In that crapshoot, I could have easily joined Ashley in being a “pillow angel.”That phrase, pillow angel, brings me to a full stop. Those two words paired together are a landslide, an avalanche, a brick wall. I imagine Ashley as a cushion giving you comfort, a cherub resting passively among pillows, a spiritual abstraction. Does love mean denying your daughter’s earthbound, everyday, messy body? Do you love her angry, cranky, profane self too? And it’s not only your daughter you name a pillow angel but also other significantly disabled children like her. You use those two words in your interviews and on your website as if to refer to a whole class of people, leveraging deeply ingrained associations among disability, innocence, passivity, and blessing. I know you intend “pillow angel” as an expression of love, but I feel those words in my bones as separation, exclusion, a denial of humanity, almost hate. Could Ashley simply be a disabled girl without language and the ability to grasp the decisions you’re making about her body — not passive or angelic?Through all your love, you so fiercely protect your anonymity, claiming no identity except as Ashley’s father. On your web-site, you’ve posted many photos of you and your family. In one, you all pose in front of the fireplace next to a Christmas tree. Ashley, your other daughter, and your wife are dressed in red; Ashley and her sister wear matching tops and polka dotted pants. Ashley sits on your lap, your arms clasped around her as she grins into the camera, eyes bright, body wiry, chin tilted slightly. She looks ready for mischief.Really, you all are the picture-perfect white, heterosexual family, except for one thing: black bars cover everyone’s eyes except Ashley’s. I imagine you justify this choice as a way of protecting your privacy on your website, which you use as a platform to explain and promote the growth attenuation treatment Ashley underwent. Does her privacy mean nothing?The reversal stuns me. For well over a century, disabled people, fat people, intersex people, people with facial distinctions, and/or people of color have lived among the pages of medical textbooks. They have posed naked, or nearly so, against blank backgrounds, the resulting images captioned with various medical jargon, black bars positioned to cover their eyes. The medical industrial complex claims these photos as necessary teaching tools, arguing that the black bars protect the subjects’ anonymity. But I agree with intersex activist Cheryl Chase when she declares, “The black rectangle over the eyes accomplishes only one thing; it saves the viewer from having to endure the gaze of the subject.”In your Christmas photo, the black bar is for once placed upon nondisabled rather than disabled people. Yet in this context, the bars covering your own eyes only serve to focus more attention on Ashley, revealing her body even more. I, for one, am glad to see her lopsided grin. The familiarity of her bent wrists, taut neck, and tilted head catches me; I find glimmers of my body reflected in hers. But I’m left needing to ask again about love. Does love mean protecting your privacy while displaying your daughter’s body and story on your website and in interviews?Love braids itself with the desire to protect. Certainly you express that desire repeatedly — a yearning to protect Ashley from discomfort and abusive care, from the possibility of pregnancy and the danger of sexual violence, and from potential institutionalization. But protecting her privacy isn’t high on your priority list. I’m struggling to trust your love.You rail against the laws that conflict with the medical choices you’ve made. You write:While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are . . . capable of decision making and those who . . . [like Ashley] will never become remotely capable of decision making.Not so long ago, eugenicists would have designated Ashley an idiot, locked her up, and sterilized her, regardless of what you wanted. Who is worthy of protection in a country where, between 1900 and 1982, the state authorized and performed more than 60,000 involuntary sterilizations?I want your love of Ashley to yield not an operating room where individual surgeons reshape individual bodies but rather a world in which disabled children aren’t vulnerable to abuse, neglect, rampant sexual violence, sexualization, and institutionalization. Listen to black scholar and activist Cornel West as he says, “Justice is what love looks like in public.” I mean, really listen.What would the work of parenting Ashley look like in a world where access was guaranteed and you could tap into a plentiful network of social, material, medical, and educational support? What choices would you have made if the possibility of needing to institutionalize Ashley didn’t loom over all your decisions and if you knew she wasn’t at risk of ableist and sexist violence? I imagine a world in which Ashley is loved and valued exactly as she could have been: a disabled girl growing into her woman’s body and self.In asking you about love, I’m remembering all the people studied, observed, and written about: People injected and cut open without consent. Men castrated. Women sterilized. People shocked, numbed, locked in isolation rooms, and locked away for good. Babies studied and graves robbed. Even with your love, Ashley joins this legacy.Love does not erase history. Love is not unassailable. The question remains: how is a father to love, nurture, and protect his disabled daughter?