mother and daughter: a death wish

“Dear Mummy, I hate you for multiple reasons, the most recent one being because you went on and on about my teeth at Easter in front of all your gross friends. You want me to be like your perfect junior league girl, and grow up to do charity balls and be the concubine for some banker, like you. But the truth of it is I am addicted to you like chocolate. I always want to be around you. I’m some like stupid little puppy and you keep like kicking my teeth in with your words and your tone. Sometimes, I wish you were dead.” –Tori to her mother in Lost and Delirious

A death wish: the walls that contain the misery are brought down: the moment of revolution is a new form of reproduction, a reproduction of another kind of life form.[1] A death wish: she sits alone with her mother’s headstone. It’s monsoon season and the afternoon skies are thick with rain clouds cast across the Greater Phoenix Valley. Streaks of sun light beam through like God herself reaching down onto the deforested Sonoran desert.

No one else is at the graveyard. She sits alone. She wants her mother to know everything.

She sits alone with her mother’s headstone. She tries to breathe, recalling words like freak, like recluse, or, to be more precise—freak of nature, recluse with a thick curled “r” looping upside down into the phonetic lull of the “l” like a beachside rollercoaster ride: recluse. She still hears her mother screaming these words from the hallway, through the precariously locked bedroom door. Simply a bobby pin would pick it open, but she locks it anyway.

What does a mother do with such a daughter? Unusual yet disarming. Queer might work. Recluse, solitude: the daughter holds a love for quietness with words and thoughts alongside her hand-me-down Acer laptop and pocketsize rhyming dictionary. What does a mother do when her daughter spends money on books, not shoes? This might seem simplistic, cliché almost. But this was her reality. A troublemaker for reading books and writing poems and feeding her ravenous imagination. She refuses to be placed. Everyday her mother keeps kicking her teeth in with her words and her tone. Freak. Recluse. Blood curdling spews against the cacophony of an amusement park landscape parading in her head. A circus, a freak show. Come one, come all! Bear witness before your very eyes to that which you are not. There is so much that her own mother can’t recognize about her. She cannot recognize her own daughter even when she’s standing right there begging her to stop saying those words in that way. Begging, on her knees, she says please mother please, leave me alone. There’s blood on her knees and the tears they feel good on her cheeks. Please, mother, please.

She wants her mother to recognize her. She wants it but she can never have it in this life-world. A death wish: she writes a poem for her mother, it’s a never-ending story in medias res and in it she creates a fantastical, complicated, beautifully twisted life-world where they both co-reside, co-exist and recognize all that is so defamiliarized: a mother seeing her own daughter for the first time.

Oh and back in real-life there’s tattoos and things, body piercings, In-N-Out milkshakes and other devilish wastings.

Her mother sobbed through the gulps of wine. She had never seen her drink like that. She stood right there, showing her mother the tattoo, and her mother couldn’t see it right in front of her face. Do you do this just to be different? To make a point? As the deviant who attempts to expose the conditions that make her a supposed deviant to her own mother in the first place, this very attempt to expose is used against her by her mother and thus the daughter becomes the origin of emotional and social violence, the cause of unhappiness—rather than acknowledging the historical systematic origins of violence that make her appear deviant in such a way; the daughter being the cause of unhappiness stops any recognition of her daughter’s weirdness as a misperceived production—which prevents the possibility of alternative possibility from seeming possible at all. Possibilities have to be recognized as possibilities to become possible. And yet the disbelief in the possibility of a different world can function as a psychic defense against suffering. The daughter knows of her mother’s suffering, for she inherits it.

Her mother would say: summer is coming up and you are going to have to start wearing shorts, soon. Why don’t you wear shorts anymore, daughter? Is it because you don’t fit into them anymore? Are your legs too fat? How much do you weigh these days?

She would tell her mother to leave her alone. She told her mother over and over again: leave me alone.

Her mother would say: don’t you have any respect for yourself? Don’t you care what other people think? This is where it starts. You gain five pounds this year, ten pounds the next year, and before you know it you are obese and have no self-confidence. Don’t you have any self-confidence? You are barely fitting into the size fives anymore. You are bulging out of your pants. What did you have to eat today for lunch? Any fruits and vegetables? Whatever happened to that cute shirt I bought you? I have never seen you wear it. That’s it, I am sick of doing nice things for you and constantly buying you things. The world doesn’t revolve around you, daughter.

The world doesn’t revolve around you, daughter. The world doesn’t revolve around you.

She tried to tell her mother, to tell her, but she never listened.

Her mother would say: you are so unappreciative and selfish. Those long hippie skirts you buy are like circus tents, trying to hide your fat self underneath them. I never see girls your age wearing those.

Her mother nagged and picked and prodded. She hated her for it. She started to learn to ignore her. The mother’s voice abuzz in the background cackling amidst kitchen sounds while the daughter stares down the hallway, at the front door, wondering when she would, when she could, leave.

She sits alone with her mother’s headstone. She wants her mother to know everything. She hopes it’s not too late.

The grass is yellow and hard and is irritating her skin. But she has nowhere else to sit— besides, the pre-monsoon sky comforts her and she is finally relaxed, she can finally breathe, and she feels like her mother is finally listening to her. She breathes. She lets the moist desert oxygen wallow in her alveoli. She reduces speed: direction over time. Her eyes roll up into the back of her skull and she sees her own thoughts. And she lets the pounding, screaming thoughts breathe. Just lets them breathe and lets the neurons rest and maybe cry a little bit because she can feel those tears coming on through the face. They are boiling and breaking and baking and deep-frying and steaming beneath the surface begging to get out. So she is going to let them out and let the storm free free free.

She throws away her old pants. They don’t fit her anymore, her mother would be proud. She almost squeezes into a size two now. She burns them. The pants. She burns them in the desert. It is a huge fire. She jumps into that fire. She rolls out the side into the dirt and stares at the flames that are ignited on her shirt and she watches it go through the cotton onto her skin. She feels the burning against her body and she smells the rancid smell of burning flesh. Finally she puts out the fire on her arm. The doctors say it will scar forever. It is beautiful and the new layer of skin starting to grow over it is chunky and pink.

Her mom is gone. She dedicates the scar to her. A reminder, maniacal memories: freak, fatty, recluse, disappointment. Her mother’s voice buzzes and the words blend together and she slams her door against the boils of her rage, her unhappiness. But the buzzes they crawl through the opening at the bottom of her bedroom door and she could still hear her mother. She could always hear her mother. It didn’t matter how hard she tried not to she could always hear her.

Her mother would say: obviously he doesn’t want you as a girlfriend because you barely even take care of yourself! Why would he want a girlfriend like that? Maybe if you put on some mascara and eye shadow once in awhile he would notice you in a different way! Maybe if you didn’t tip the goddam scale! Then he would want you and want to show you off to the world. But look at you!

She tries so hard to un-remember, to un-hear all that is living and ever-present.

She shouts back: shut the fuck up! She yells back at her through her locked bedroom door. She is hiding in the corner on the other side of her bed ripping out the carpet with her fingers. She digs her fingers into the carpet with her chewed nails—she rips so hard at the carpet her damaged fingernails start to bleed. Stain the carpet. She continues to rip at the carpet. She says, leave me alone. Leave me alone.

She sees red. She snaps in a fury screaming at her mother: why would you say that? Why! H o w  c o u l d  y o u ? She hates her and she can’t stop yelling and pulling out the carpet. The screams they turn into desperate cries and light up the house and she barely hears herself screaming because her ears go numb from the verbal abuse. She hated her mother for making her snap, for making her say irrational, horrible things to her own mother. She hates her for it. What does not get noticed is the violence that makes her act in the way she does, as the violence of provocation hovers in the background.[2] She hates her mother for it because she feels like her anger has nowhere to go. She can only direct so much of the anger at her mother because not all of it is for her. The violence of provocation that hovers in the background is the production of her mother’s misery, the mother’s long childhood history of fatness and being bullied. How can she blame her mother when she knows of such pain and suffering?

She sits alone with her mother’s headstone. She wants her to know everything. She hopes it isn’t too late. She says, I’m sorry. She says, Mom, I don’t think I can stop.

She holds her breath and picks at a hangnail, pulling a piece of skin down her finger alongside it. Her mother: consisting of bones, varicose veins, and sagging skin. Her entire body, withered and gauntly. She still hears her mother at night, vomiting into the toilet. There are bloodied bile stains on the tile, the stench so vile with chunks of crackers and frosted cookies.  She wants to wipe them away but she can’t. She could smell her mother’s looming end. She could smell it. It’s everywhere. She wanted her mother to stop but she never listened to her. She loves her so much and she is so sorry that she never told her enough. She is so sorry that she never told her mother that she is lovely, she is kind. She is sorry that she never told her mother that she knew she sacrificed it all to raise her daughters. She knows she sacrificed it all: dreams of art-making, designing, creative ventures. Her mother’s house, like a museum of hints at that which she could have had. Hand crafted ornaments, homemade sofa pillows, decorated picture frames, painted strokes of gold and red and purple covering the shelves she created and installed herself. She hopes it’s not too late.

She chews on her fingernails alone next to her mother’s headstone down to the bone down to the crescent of the moon. The nail biting is compulsory, automatic, obsessive. She digs into her fingernails, ripping away skin and cuticles and flesh and nail. She becomes vicious in her pursuit: nails and flesh locked against teeth and jaw. And she sobs. Her hands are preoccupied, clenched against teeth, and she tastes the salty salty tears that pour into her open mouth like sweet raindrops. The tears stream down her hot cheeks and slide over her lips, curving into her slightly open mouth. Salty and sweet. Red-hot cheeks moist and shiny in the bittersweetness; forehead and eyebrows braced in distorted expressions. Freak. Recluse. Do you do this just to be different? To make a point? Soon she tastes blood as well. She tastes the sweet, salty tears and the odd taste that is blood. She wants her to know everything. She doesn’t think she can stop. She destroys her nails and cuticles enough to the point that blood is oozing and seeping through the tips of her fingers. She rips one last cuticle out from the side of her middle fingernail. The pain is so sharp the pain is so deep the pain is so excruciating from ripping out a thick, rooted cuticle and a long piece of skin that for a brief moment her sobs pause and she breathes calmly through her mouth as she watches the fresh hot blood throb in fiery pain where her cuticle and skin were just attached. Enthralled, she tears back pieces of skin surrounding the wound to make the crevice wider and deeper.

She wipes her tear-stained face with her tender swollen fingers. She sits alone next to her mother’s headstone often. She is quiet and she sits there and watches the sun as it sets. She says, the sunsets are incredible here mom, even with the monsoon clouds—they’re all the more brilliant. Bright orange, pink, fuchsia.

She pushes herself off of the ground and shuffles down the small hillside. A death wish: the walls that contain suffering are brought down, and she might be recognizable to her through all that is defamiliarized. Her mother is alive and ever-present.


[1] Sara Ahmed, The Promise of Happiness.

[2] Ahmed.

Advertisements

what happens when i go crazy

going crazy – what does it mean – to me – to you – different things, different madness, different minds different bodies different pain wrenching pain pain pain pain.

what happens when i go crazy

well

i throw things, like heavy staplers, phones, candles, books.

i break things like ceramic, like glass, like dishes, like clothes ripping off my body cuz well i’m going crazy aren’t i. performing madness like my life is a stage and my body dissociates at every turn into every scene, goodbye reality.

i clean my kitchen like my life depends on it. scrubbing hard, every last dish every last crumb every last coffee stain wine stain like amoebas crusted on the counter tops must douse with Windex wiped down til it squeaks.

what happens when i go crazy

i bruise my body, i cut my body – with my fists, with razors, pick off old scabs see new blood blood blood.

i can’t stop.

?

what happens when i go crazy

i cry

i cry so hard

in the bathtub, running steaming hot too hot scalding hot water over my body crying into the burning water. i cry, i scream, wailing like i have no other way to convey this pain but to caterwaul into the echos of my little bathtub.

i cry in the rain when i’m breaking dishes on my front porch but it was san francisco so no one really hears anything and thank god for that.

i deface my dresser with words scribbling words writing stream of consciousness negative self-talk beautiful penciled words scrawled across my $35 ikea mini wooden dresser. i cut and i bleed and i blend blood with pencil on wood and ah it’s so wonderful.

what happens when i go crazy

i curl into myself, folding in, cradle.

i pull my hair i pull hard pull and pull and pull pull pull pull.

i go crazy until the craziness has no where else to go and i’m depleted i’m wretched and i can finally sleep.

Adulthood? Never!

I’m kidding, kinda.  I don’t have an oppositional stance to adulthood so much as a perturbed curiosity towards it.  My orientation towards adulthood is a queer one–meaning, I see adulthood and I feel its pending doom, and so I dance around it playing with the power it gives me.

Yes, there is power in adulthood.  There is the power of the normative, of course, and the validation one receives from complying with its normative playbooks.  The will to win within the rules: but what about the will to win by breaking the rules?  That’s what I like about adulthood.  What I like about my looming adulthood is the reappropriation of this power, the disidentification of it.  I love people beginning to see me as an adult, because it gives me that certain kind of (normative) power, but I relish in it and laugh and use it against itself.  I like to name that which is unnamed: the “normal” things adults are supposed to do on an everyday basis in order to reproduce our life projects as such.

And there are so many of these things!  These things that make me laugh but it’s a laughter from a place of pain and violent subjection.  Take, for instance, access to couples counseling.  EVERY “COUPLE” DESERVES ACCESS TO MENTAL HEALTHCARE.  However, the silliness that is our hetero-patriarchal nation-state only permits access to such resources on the basis that two adults record their status as partners.  Minimally, this is domestic partnership.  My partner and I have decided to sign up for this all-inclusive package as we move our lives from San Francisco to Tucson, Arizona.  In other words: getting access to mental healthcare as a “couple” (two people who care about each other in need of counseling?) is fucking difficult and EXPENSIVE without proper documentation.  Thus we become “domestic partners” whether we like it or not.  We begrudgingly accept this call to ideological reproduction at the same time that we acknowledge the positions of privilege and power we have in order to even get access to such surveillance.  AND, through the begrudging, we might even experience joy and elation from the cultural celebration of our partnership.

He’s got a fancy full-time respectable job with benefits at The University of Arizona with UANews.org, and I, the starving writer/artist/activist/theorist, do not.  Talk about being unwillingly interpellated as an adult when it comes to getting the basics of life sustainability: health care.  Now, not only do I need healthcare, but WE, my partner and I, need it as we are unsteadily incorporated into the normative confines of adulthood.  It’s a violent and stressful and depressing life process, and we need some support (like anyone and everyone!).

Why is it violent and stressful and depressing?  Because, as a queercrip feminist awesome bundle of joy, shit like marriage and being documented by the state is… it’s like this: one mini-crisis after another apologizing to my 21-year-old self for betraying all that I have always been so ANTI- about.  I am so sorry radical revolutionary self!  I am so sorry!!  I succumb to the disciplinary and regulatory technologies of governmentality.

But at the same time, I’m not SO sorry because it’s all so silly.

Take this language for instance on the City of Tucson Domestic Partner Registration Instructions:

The Tucson Domestic Partnership (DP) Ordinance is a city law enacted September 15, 2003 and effective December 1, 2003, that provides a registry for domestic partners who wish to register. This is a means by which unmarried couples who share a relationship of mutual support, caring and commitment may document their relationship. This is the first domestic partner registry law in the State of Arizona.

“… may document their relationship”?  Aw, thanks State of Arizona, you’re so kind to extend this privilege to me.  “May I?” Why, yes you may (does anyone else think this is hilariously awful?).  Thank you for recognizing my loving and caring partnership in this manner.  Now as an eligible dependent (that language doesn’t make me feel like a burden or anything), I can have healthcare and get the sweet UofA tuition discount (more in-class queer theory? yes please!).

Well-wishes may be for bullshitters.

“The gift of happiness is imagined here in terms of civility.  Human happiness is increased through the courts (law/justice), knowledge (reason), and manners (culture, habits).  Civilization is imagined first as what is brought to ‘their doors’ and second as an irresistible moral pressure.”

“Colonial knowledges constitute the other as not only an object of knowledge, a truth to be discovered, but as being unhappy, as lacking the qualities or attributes required for a happier state of existence.”

-Sara Ahmed

She texts him, I hope your day is steady.

Steady.

Not good, not bad.  Steady.

Because well-wishes for the day are bullshit when you’re depressed.  She knows this.

She knows this but it’s a struggle.  It’s so much easier to say, I hope you have a good day, and leave it there, hanging in the air, empty and pretending.

It’s so much easier to say, I hope you have a better day today babe.

But getting better comes at a cost greater than the struggle.  Struggle, steadily.  Well-wishes may be for bullshitters, but what other vocabulary do we got?  There will be no justice within imperialist utilitarianism.

Have a steady day.

The PhD and normative time

Recent personal disability-happenings have me reconsidering launching into a PhD program right from my MA.  This shakes me in many ways.  I’m in the fast-lane, ready for my “career.”  What might it mean to wait another year, if not two more, for the long-awaited doctorate?  In the context of disability justice, well, my comrades might simply give me the nod knowing that I gotta do what I must do.  Good days, bad days–crip time is tricky against the normative ebbs and flows of legitimated knowledge production.

Who says I’m not a scholar already, anyway?  Because I am.

In her 2011 Society for Disability Studies Annual Conference paper presentation “Cripping Anti-Futurity, or, If You Love Queer Theory So Much, Why Don’t You Marry It?” Ellen Samuels writes:

At the University of California, Berkeley, where I earned my Ph.D. degree in English, graduate student education is structured by an administrative construct called, with no hint of irony, “normative time,” referring “to the amount of time it takes ideally for a student in a particular discipline to complete a doctoral degree.”

Samuels goes on to quote the book In a Queer Time and Place:

Finding that the normative time model could not fully accommodate my queer, disabled, parental existence, I have sought other temporal models to think through these multiplicities. Judith [Jack] Halberstam offers the concept of “queer time” shaped by “nonnormative logics and organizations of community, sexual identity, embodiment, and activity” (6).  Halberstam’s queerness refers not so much to sexuality as to the “outcome of strange temporalities, imaginative life schedules, and eccentric economic practices” (1).

I am glad that Samuels is starting to think about queercrip time in the academy.  I know many, many other disability scholars have written about this topic, especially as it relates to accommodation in the academy as either grad students or professors.  So I let myself pause alongside my disability-happenings, think with the happenings and not against them, and I actually don’t feel so bad with the thought of letting things settle.  In fact, it feels relieving to validate my own crip time in the academy.  We’ll see what happens.

Some Notes on Eugenics

Osagie Obasogie, Professor at the University of California Hastings Law School, says it well in this sweet new 4-min video by the Center for Genetics and Society (CGS) in Berkeley:

“When I speak with colleges, grad students and professional schools, and I ask them about the eugenics movement, oftentimes they’re not aware how much that movement originated in the United States. Having this deeper context to understand this long history of science being used or misused and abused to justify the oppression of other groups is important to understand how what many people consider to be good intentions can often have bad outcomes for certain populations and certain groups.”



In “Race Under the Microscope,” Emily Beitiks with Biopolitical Times asks us:

“How and why do long-discredited biological explanations of socially-defined race maintain a presence within scientific and medical research? How do misguided research practices and policies lay foundations for technologies, discourses and public understandings that foster biological assumptions about race?”

Why I am glad you asked, Emily. Significantly, what is at stake in a given project like eugenics depends upon the conditions of its arrival. So let’s start with the basics: Sir Francis Galton is known as one of the “founding fathers” of eugenics, he’s also Charles Darwin’s cousin–you know, Darwin, (thinking back to high school biology…) evolutionary theorist, known for his work on what he calls “natural selection.”

Galton claims: “Eugenics is the study of all agencies under social control which can improve or impair the racial quality of future generations.”

What were some founding goals of U.S. Eugenics at the turn of the twentieth century?

  • Create a superior Nordic race.
  • Sterilize 14 million in the U.S. and millions worldwide.
  • Eradicate the “lowest tenth” until only Nordics left.

U.S. Organizations and Funders
Organizations:

  • American Breeders Association, 1903.
  • J. H. Kellogg’s Race Betterment Foundation, 1906.
  • Eugenics Record Office, 1910.

Eugenic record office

  • Galton Society, 1918.
  • American Eugenics Society, 1921.

Gilded Age Funding:

  • Harriman family (railroad).
  • Rockefeller (Standard Oil), also funded Nazi program.
  • Carnegies (steel) funded Cold Spring Harbor, NY eugenics laboratory.

Eugenic Leaders

  • Charles Davenport: zoologist and biologist, wrote the book Heredity in Relation to Eugenics (1911) where he surmises that “all men are created bound by their protoplasmic makeup and unequal in their powers and responsibilities.”
  • Harry Laughlin: publicist, known for his unrelenting advocacy for U.S. eugenic policies of compulsory sterilization legislation. He bethinks, “In the long run, military conquest by a superior people would be highly preferable to a conquest by immigration by peoples with inferior stock endowments.”

Racial Classifications
“Dysgenic”

  • Immigrants from Southern and Eastern Europe (enacted strictest immigration laws ever).
  • People of color in the U.S. (segregation and miscegenation laws – sterilization).
  • “Feeble-minded,” poor, uneducated, people with disabilities, blind, deaf, “promiscuous” (segregation and sterilization).

Slight detour: linking the past to the present. Disability, deviance, and “feeble-mindedness.”

  • As a historically contingent and contradictory process, the threat of deviance is stereotyped and pathologized as the cause of criminal and immoral behavior, thus in need of discipline and control so that one’s “deviance” may be protected from society and moreover so society be protected from non-normal bodies and minds. For instance, eugenic ideology renders neurological variations as pathological cognitive impairment, or what is currently known as developmental disability, which presumes an inherent inferiority in mindedness.
  • In her essay “Docile Bodies, Docile Minds,” Licia Carlson investigates the ways in which institutions and asylums at the turn of the twentieth century depended upon and perpetuated the contingent nature of contradictions within the category of mental retardation itself. She writes, “The institutions, as protective and productive sites of disciplinary power, perpetuated the view of feeblemindedness as both a helplessly static fate and an improvable, dynamic condition.” Historically it is believed that, as pathology, such non-normalcy is a hereditary “helplessly static fate” and thus reproducible; hence the hyper-regulation and disciplining of non-normal bodies working through sexuality and reproductive capacity (like Harry Laughlin’s proposed legislations around compulsory sterilization). Pervasive reproductive surveillance of cognitively disabled people continues today, portraying people with neurological variation as infantile sub-humans who remain “unfit” to be proper parents.

“Eugenic”

  • Eugenicists believed in an extremely narrow definition of “fitness.” A eugenic family was (according to THEIR definitions!) intelligent, healthy, Nordic (or at least Teutonic or Anglo-Saxon), and prolific breeders.

Social context: Immigration
Massive immigration: fears of disease, many Americans feared labor competition from cheaper immigrant labor, rise of socialism, labor unrest (hmm… sound familiar? U.S./Mexico border, anyone?).

Immigration Laws
1920, Eugenicist Harry Laughlin testified before the U.S. House of Representatives Committee on Immigration and Naturalization.

  • “Immigrant women are more prolific than our American women.”
  • Immigrant “blood” threatened to “weaken the stock” of Americans.

Immigration Restriction Act of 1924

  • Halt the immigration of supposedly “dysgenic” Italians and eastern European Jews.
  • Number of immigrants from each country in proportion to their % of the U.S. population 1890 census (northern and western Europeans).
  • Quota of southern and eastern Europeans reduced from 45% to 15%.
  • Repealed by the Immigration and Nationality Act of 1965.

Eugenics Popularization: Church, EDUCATION, Fairs, Films, Conferences, Books.

Prestigious U.S. universities like Stanford, Yale, Harvard, The University of Chicago, and Princeton were pioneers in eugenic “scientific” knowledge production, and many eugenic practices continue today in genetic testing.

Eugenics and disciplinary knowledge production

Fitter Families Contests, from eugenicsarchive.org:

  • When one considers the strong contribution of agricultural breeding to the eugenics movement, it is not difficult to see why eugenicists used state fairs as a venue for popular education. A majority of Americans were still living in rural areas during the first several decades of the 20th century, and fairs were major cultural events. Farmers brought their products of selective breeding — fat pigs, speedy horses, and large pumpkins — to the fair to be judged. Why not judge “human stock” to select the most eugenically fit family?
  • This was exactly the concept behind Fitter Families for Future Firesides — known simply as Fitter Families Contests. The contests were founded by Mary T. Watts and Florence Brown Sherbon — two pioneers of the Baby Health Examination movement, which sprang from a “Better Baby” contest at the 1911 Iowa State Fair and spread to 40 states before World War I. The first Fitter Family Contest was held at the Kansas State Free Fair in 1920. With support from the American Eugenics Society’s Committee on Popular Education, the contests were held at numerous fairs throughout the United States during the 1920s.

Texas State Fair, large family winner of the Fitter Families Contest, 1925

  • At most contests, competitors submitted an “Abridged Record of Family Traits,” and a team of medical doctors performed psychological and physical exams on family members. Each family member was given an overall letter grade of eugenic health, and the family with the highest grade average was awarded a silver trophy. Trophies were typically awarded in three family categories: small (1 child), medium (2-4 children), and large (5 or more children).
  • All contestants with a B+ or better received bronze medals bearing the inscription, “Yea, I have a goodly heritage.” Childless couples were eligible for prizes in contests held in some states. As expected, the Fitter Families Contest mirrored the eugenics movement itself; winners were invariably White with western and northern European heritage.

Let’s conclude with some Edwin Black:

Hitler and his henchmen victimized an entire continent and exterminated millions in his quest for a co-called “Master Race.”
But the concept of a white, blond-haired, blue-eyed master Nordic race didn’t originate with Hitler. The idea was created in the United States, and cultivated in California, decades before Hitler came to power. California eugenicists played an important, although little known, role in the American eugenics movement’s campaign for ethnic cleansing.

On Death, Disability, and The Promise of The Cure

I need to reiterate my concern for Daniella’s death being co-opted by cure rhetoric.  Daniella, type-1 diabetic, died in her sleep in November 2011 from low blood sugar.  From what I can tell, Daniella was a white, blond-haired seventeen-year-old born and raised in Australia.  I never met Daniella in real-life, only posthumously in cyber-life.  To rehearse from my previous post, many blogs and JDRF advocates clung to her story and death with rhetoric that emphasizes the dire need for a “cure.”  I am also an advocate for the cure.  But I am also very critical of it when socioeconomic intersections and historical contexts are taken for granted in such rhetoric.  Let’s consider “the cure” as an object, like something we could grab onto and hold and make all that is supposedly ill, sick, diseased, damaged and deformed about our bodies simply go away so we could ‘go back to normal’.

I want to think about this: what is the cure doing in its co-optation of death by diabetes in order to advocate for its own cause of longevity, strength, and so-called health?  Perhaps this is where we can see more clearly the ways in which the cure functions to cover over the “able-bodied” order as is, thus reproducing the narrative of Daniella-as-victim in need of saving by mainstream medicine and science (see previous post on passive victimhood).  This is a narrative script: cure rhetoric reproduces the notion of disability as individual tragedy to be overcome–thus justifying medical authority and its pervasive surveillance of our pathologizable bodies.  This narrative strips Daniella’s crip existence of agency, value, and respect.  This narrative perpetuates the lottery approach to life and the idea that the chance or hap of disability can be controlled if only we had more money for the cure.  By covering over the “able-bodied” order, the cure as a veil might depend on the failure to recognize the failure of coincidence, or rather, the failure to recognize the chance of disability: maybe some things just can’t be controlled (like “coincidence,” like unexpected encounters)—disease happens, illness happens, pain happens, accidents happen, and death is inevitable.  Yet cure rhetoric disavows this reality.  The cure promises containment of disability.  In the circulation of the cure’s promise, disability is implicitly rendered as individual tragedy rather than seen complexly as systematic inaccessibility and a complicated, intricate bodily experience that has a place in this world.  The cure ultimately hopes to rid the world of pathologized disability where it justly has a place.  Disability belongs like all other life forms.

The exclusionary nature of the cure as a promissory object is evident in a recent article titled “More Ways to Cope with Type 1 Diabetes” published in The New York Times just last October.  We might say that Daniella, and my sister Britt, are included in the cure’s circulation as a promise of longevity, strength, and health.  Brittany actually sent me this article originally and with much excitement towards the prospects at hand.  But as I read through, a slight if caught me off-guard and sent my critique spiraling.  This article features a seemingly all-American heteronormative family with two children who so happen to have juvenile diabetes.  However, this “so happens” is disavowed through the logic of a lottery approach to life and the authority of medical science.  Journalist Jane E. Brody writes, “Type 1 diabetes has long been known to have a genetic basis that somehow interacts with environmental factors” (emphasis added).  What I want to call attention to here is the normalization of medical authority: third-person scientific fact is taken as natural, objective truth.  The speculative “somehow” of Brody’s reporting nonetheless implies that diabetes is potentially controllable: if the epidemiology or cause of juvenile diabetes is known at a genetic level, there is more hope for cure.  For the record: there is no indisputable evidence that diabetes is pathologically genetic or hereditaryBased upon her tentative claim of type 1’s hereditary possibilities, Brody remarks that “when the Gustins’ daughter Fiona was also found, at age 9, to have the disease, her parents knew it was not a freak coincidence” (emphasis added).  Brody explicitly denies the coincidence of disability: in doing so, she reinstates the myth of control and relieves the reader of her fear of disability.

A rhetorical representation of the cure as object

The possibility of cure as promissory object for the Gustins family is evident through their access to healthcare: their son had “been enrolled at birth in a University of Colorado study looking for markers for Type 1 diabetes in umbilical cord blood,” in addition to affording the costs of insurance, and “substantial co-pays for the insulin pumps both children use, pump supplies, test strips for blood sugar and, of course, a steady insulin supply.”  However, the elusive exclusionary nature of the cure as promissory object is nearly indiscernible yet paramount to those for whom healthcare is systematically out of reach: Brody writes, “In the last 40 years, improvements in blood sugar control have resulted in an average increase of more than 15 years in life expectancy for people with Type 1 diabetes…Further improvements in life expectancy are possible if patients can afford good care and have access to it” (emphasis added).  Brody fails to mention that the costs of an insulin pump without healthcare insurance ranges from $7,000-10,000, and that does not include the regular cost of insulin.  Regardless, the costs of insulin pumps with health insurance are still heavy.  Without access to the technology of insulin pumps, management of stable blood sugar relies upon the “human error” of insulin injections via syringe needles.  Thus, access to “improvements in life expectancy”—or rather, reproductive futurity and longevity—via the cure, or even access to the hope of cure, systematically underlies the ascendancy of whiteness and its affirmation of the modern “Self” through virtues of health and longevity.  Meanwhile, the cure (and healthcare more broadly) remains systematically out of reach for racialized, impoverished others who are always already deemed excessive.  It is not the possibility of cure in and of itself that is in question, but rather the ways in which its circulation as promissory affective object is unevenly distributed, and how this uneven biopolitical incorporation through the cure as happy object veils the reproduction of the social order by failing to recognize the failure of coincidence.

So we have a predicament.  While we need to work relentlessly to situate Daniella’s life experience in a crip time and place so that her life may be understood and valued as such, we also need to be critical and cautious of such death-happenings as they are co-opted by cure rhetoric and its racist, classist ways.  Moreover, how do we justly and ethically fight for healthcare treatment and universal access to it without necessarily reproducing the victim-narrative and lottery approach to life?

Daniella Meads-Barlow, Rest in Peace

Daniella, type-1 diabetic, died in her sleep Tuesday morning, November 8th from low blood sugar.  Many blogs and JDRF advocates are clinging to her story and death with rhetoric that emphasizes the dire need for a “cure.”  I am also an advocate for the cure.  But I am also very critical of it when socioeconomic intersections and historical contexts are taken for granted in such rhetoric.

In e-mails that I’ve received in the past day or two, Daniella has been framed as a victim of chronic disease.  Words like “sad” and “too soon” are attributed to her death.  Phrases such as, “This is the reality of this disease.  It happens without prejudice…to families that are working hard to keep their children safe,” are circulating on Facebook and the diabetes blogosphere.  It is without question that diabetic experiences are marginalized, rendered obtuse and thus scary.  Here I would like to acknowledge Daniella’s life with the utmost respect, and I would like to try to imagine a way that we can think about and talk about Daniella’s death (and the thousands of deaths like hers that correspond to incurable disease) without embedding such deaths with fear and anxiety.

Underlying all of this, I am left thinking about Western medicine’s emphasis on the cure, and its stigmatization of incurable conditions.  I am also left thinking about Western science and medicine’s mission for longevity.  Some might call it biopolitics, or biopower.  Some might call it capitalism, and its heteronormative conceptualizations of time and place.  Well, if we center Daniella’s life experiences with incurable disease, if we center her death within her own experience of temporalities and spatialities, maybe she isn’t victim after all and maybe death isn’t so scary, after all.  A crip time and place, perhaps?  Rest in peace, Daniella.

Daniella Meads-Barlow

 “Most people are deeply reluctant to believe that bad things happen to people who do not deserve them, or seek them, or risk them, or fail to take care of themselves.  To believe this as a general proposition is to acknowledge the fragility of one’s own life; to realize it in relation to someone one knows is to become acutely aware of one’s own vulnerability.”

–Susan Wendell, The Rejected Body

So Happens to Be Made, So Happens to Be Offered

While Travis and his family and friends enjoy homemade lasagna, I nuke Jenny Craig lasagna in the rehab center’s kitchen and eat it out if its little black plastic microwaveable tray.  Finally visitors leave and Trav and I meander off to his rehab room.  Like a dorm room, kind of.  His roommate, just on the other side of the curtain, is Curtis.  Curtis broke his neck in a car accident.  Wasn’t wearing his seatbelt.  Rumor has it the seatbelt would have “saved” him.  Who knows for sure.  The seatbelt, the wallet, the seatbelt, the wallet.  Could be anytime, anywhere.

Curtis has a poster taped to the ceiling right above his bed.  It’s a blond bikini-wearing babe licking a lollipop.  Curtis had a halo strapped to his body and screwed into his skull for months.  It’s off, and he’s now in the fashionable neck brace like Trav.

Trav has a roommate named Curtis and they’re both quads in rehab together.  When Trav and I mosey into their room, Curtis is gone.  Probably off cracking the code to the nurses break room, or hijacking the hospital intercom system to report some sarcastic, nonsensical need for the whole unit to hear.

I’m starving because the non-homemade lasagna was maybe actually two bites of lasagna.  Portion control?  More like socially acceptable anorexia.  I’m starving and my stomach’s growling even though I just ate “dinner,” and I try to ignore it but by trying to ignore it I actually obsess over it as I set up the DVD for movie night.  I try to make our movie date special by popping popcorn for Trav.  I can’t eat any of it because my “diet” (read: socially acceptable self-starvation).  And I even made the butter lovers kind because it’s not for me, right?

I turn down the lights and snuggle next to Travis as we look up at the TV glowing above his bed.  I scoop my hand into the popcorn bag and flex my fingers like a claw crane prize grabber clutching all the wondrous colorful stuffed animal toys.  I pull my arm out slowly so I don’t drop my prize: a handful of butter lovers’ popcorn.  I hold my hand out to Travis’ mouth and he licks up the salty, tasty morsels with his lips and tongue.

You see the thing is, is that I don’t really care for popcorn.  I like the crunchiness, sure, and I do find pleasure in the greasy buttery goodness.  However, I really hate it when popcorn kernel pieces get stuck in my teeth, especially my back molars.  So I typically never eat popcorn by choice.  Only if it so happens to be made, and if it so happens to be offered to me.  And if it’s not non-buttered non-salted dry cardboard tasting popcorn.

In-between prize-winning scoops of popcorn, I feel my tummy aching.  I poke at my toned yet not-toned-enough abdomen, and squeeze my toned yet too voluptuous thighs.  I think about Jenny Craig (the corporation, not the person), and I think about my disciplining mom.

I reach deep into the microwaveable popcorn bag with my claw of glory to scoop up the biggest-ever popcorn prize to claim the high-winning score.  In the darkness amidst the flashes from the TV I shovel the hand full of golden glistening nibbles into my gaping mouth, pushing my flat palm against the popcorn and into my cheeks.  I chew and chew and chew and the crane reaches back in and the claw pushes into my mouth and against my cheeks and I chew and chew and chew.  I feel enormous guilt as I grumble and gulp yet I can’t stop shoveling one handful after the other into my mouth in the darkness with flashes of TV light in Trav’s hospital dorm room during our movie time.  The ambivalence is wrenching as my stomach twists in utter guilt and utter pleasure from my uncontrollable gorge.

Having some popcorn? Travis teases, well-aware of my suffocating calorie-counting fascist regime.  His rhetorical question breaks my zone.

I wipe my oily fingers on my voluptuous pant thighs and laugh through my mastication.  I respond, Fuck it!  And together we enjoy the butter lovers’ popcorn that so happens to be made by me, that I so happen to offer to myself.

my very own new media artwork

Coming Out of the Closet

I’m eight years old, and Brittany is six.  Every Saturday since we can remember we spend the night over at Grandma and Poppy’s house—just down the street on Grover’s, on the west side of Tatum Boulevard.  Every Saturday we spend the night over at Grandma and Poppy’s.  There’s a spare bedroom just for us at the end of the long, narrow, dark hallway of the small, one-story house down Grover’s, on the west side of Tatum.  Our room is next to the garage door.  Across the hall from Poppy’s den.  Wonderful things happen in Poppy’s den.  He works in there for hours and hours, building model trains and cars.  He takes us to the Hobby Bench to pick out his next project with him.  He limps, a bad hip.  He talks unusually loud, his voice booming and almost startling.  Grandma back-hand slaps him on the shoulder, and screeches, Arnie, turn up your hearing aid!  Poppy’s eyes open wide and he shrugs his shoulders, implying, what can I do?  He’s mostly deaf.  Since World War Two.  World War Two—Poppy a lone veteran.  Ear drums blown out from the all-too-nearby blast of hand grenades.  Ka-plow-ee!  Off in the jungles of the Pacific.  Island hopping.  Hand grenades blasted and my poppy’s ear drums go ka-plow-ee.

He brings back a small sack of precious stones, gems, pearl-like beauties from his island hopping during World War Two.  I wonder my whole life where they are today, and how he got them.  A historical mystery of sorts.   We check out from the Hobby Bench with a new project.

Our room is down the hall, next to the garage door, across from Poppy’s den.  We have a pull-out couch for a bed.  We have a small walk-in closet full of random and incomplete toy sets, misplaced children’s books, and clashed items of clothing like an off-white and maroon ski jacket on a hanger next to a pair of bathing suit bottoms, draped over the corner of a coat hanger—tilted sideways from the imbalance.  Where’s the matching bathing suit top?  It must be somewhere in here, perhaps over near the shoebox with no lid, holding a pair of my dad’s old business loafers, wrestled in closet dust and placed rather queerly in the rectangle cardboard—one shoe lay sideways while the other shoe lay similarly pointed in the same direction yet completely upside down.  This is what I love about this small walk-in closet that is really no one’s walk-in closet in particular, just a walk-in closet that so happens to be in the spare bedroom that is kind of my sister and mine’s room that we sleep in every Saturday, across the hallway from my poppy’s den and next to the garage door.  I sit squarely on the floor in this small walk-in closet full of random and incomplete toy sets, misplaced children’s books, and clashed items of clothing—but actually I do not really sit squarely but queerly like the pair of dusty loafers in a rectangle cardboard box with no lid.  I sit queerly since my pigeon-toed legs demand I do so.  I close the closet door and sit on the floor alone tinkering through the trinkets and missing board game pieces and missing bathing suit tops.  Immersed in an absent presence, combing through what’s not there, curious and careful as I peruse and ponder.  Might I install a sense of order to these knick knacks?  I pick through one by one, flipping through an old hardback children’s book with pages torn and corners bitten off.  This is what I love about this small walk-in closet.  Full of random and incomplete toy sets, misplaced children’s books, and clashed items of clothing—these missing pieces, absent presents: refuse categorization.  Resist organization.  I’m enthralled by the unruliness and I embrace the unknown of the bathing suit top, the cropped book pages, the dusty loafers facing all directions wrong.

There is a light wrap at the door and it’s my sister’s six-year-old voice asking me to come out of the closet and observe as my poppy puts the finishing touches on his latest model car.