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.

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Maria Barcelona and Brice the Weed Fairy, part one

I’m going to start this blog post off by saying that stoner subculture is the shit.  We look out for each other.

Maria Barcelona (pseudonym for privy-ness) and I land in Denver, Colorado and we make it from the airport to our hotel room before we start scheming.  How could we score some bud?  We are undocumented stoners amidst this magical rocky mountain landia.

Maria Barcelona’s got street smarts.

We get to our $50/night studio hotel at The Homestead—endearingly nicknamed “The Shithole”—and nothing sounded better than lighting a giant mid-afternoon doobie to bear the hot humidity and to get rid of our travel aches.

Then the power goes out.  The whole hotel.  And apparently the whole Denver Tech Center, too.

We start scheming how we’re gonna find some weed but really we’re not scheming what we’re actually doing is getting mentally prepared to scope out fellow stoners among our adventures to the kabob and pita shop and conjure up the risky courage to ask a complete stranger if they got any or know someone who does.

Cuz how else would we do it?

We leave the hotel just as the power goes out and begin trekking to Ali Baba’s kabob shop approximately 0.6 miles away from our humble abode on the other side of the freeway from the conference hotel.

It’s hot and sunny and sticky out, about 3 o’clock in the afternoon.

Allow me to give some backstory.  Maria Barcelona and I meet up in Denver, Colorado for the 25th Annual Society for Disability Studies conference.  And, speaking of disability studies, marijuana ain’t no joke.  Weed is so stigmatized for so many interlocking systematic reasons and frankly it’s bullshit.  Medicinal marijuana is a serious thing and even when it comes to vast embodied experiences like chronic pain, cancer, migraines, PTSD, anxiety, and insomnia, the mainstream still gets their panties in a twist about it.  AND, let me be clear that also, substance use is complicated and some people like to get high, for whatever goddamn reason that may be—and cheers to them.

In terms of a more contemporary historical and rhetorical framework surrounding the deviance that is marijuana consumption, I immediately think of the 1980s and Ronald Reagan M.H.R.I.H. (May He Rot In Hell) with Reaganomics’ mass privatization of social services, U.S. imperialism and clandestine genocides through the Dirty Wars in Central and South America, and the whole “War on Drugs” thing.  I graduated from D.A.R.E. in 5th grade.  Fuck that program trying to instill the fear of god in me when it comes to illicit substance consumptive practices.

Maria Barcelona is a sexy crip of color femme who has immense chronic pain to which I will never truly “know” the extent of her experiences but that’s not the point.  And no one, I repeat NO ONE, should ever have the authority to prevent her from accessing medicinal marijuana and consuming it.  I suppose the pharmaceutical industry and the medical industrial complex (MIC) is missing out, you know, from exploiting her pain with script after script of acetaminophens and hydrocodone.  But that same MIC is the one who won’t cover the costs of new mobility devices that will properly support her hips, legs, arms, back, neck, and other various body parts that are perpetually in never-ending pain.

Me, well, I use ganj for my own psychiatric purposes and impulsive pleasures.

So here we have the crip and the crazy—undocumented stoners across state lines—and we need the goods.

We finish our mid-afternoon lunch and M. Barcelona wants to take the bus back instead of walking.  No prob, so we figure out the route and wait for the 4:12pm bus.  While we wait we actually try hitchhiking, because for a car the 0.6mile distance is but a two-minute detour.  We legitimately try hitchhiking as we wait for the bus but car after car passes us to no avail.

Finally the bus comes and we’re dropped off at the major intersection near The Shithole.  I’m squinting on the street corner and rolling my short sleeves up in the humid heat when abruptly I hear M. Barcelona’s voice asking: do you know where we could get any weed?

I immediately look over and it’s a young kid maybe 20 years old with a black LA baseball cap on and in busboy attire.  He must’ve just got off work.  He looks at M. Barcelona and I and smiles.

I’m actually going to score a spliff right now, he says.  I have to travel just north of Denver to my buddy’s farm where he grows.

After some casual conversation introducing ourselves, Brice The Weed Fairy pulls his cellphone out of his pocket to take our number.  He laughs.

It’s 4:20, he says.

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.

the night before

The lovers walk hand in hand, across the slippery and saucy super-sized saucer: her plate, they skate along like grace at a pace in sync with the swirl and twirl of fork fingers, of spaghetti noodles. Silverware and Bolognese combine, intertwine, to pluck her palette with pleasure. She eats, mmm, mmm, one romantic grandstand after another to a salacious ovation applauding on the tip of her tongue. In the back of her throat. On the roof of her mouth. Titillating her taste buds only for such a moment to be remembered with torment, with painful self-humiliation.

That fucking diet, again. I don’t know, maybe this is the second or third “official” time. She made an appointment with a weight loss counselor. She has her own chart, with waist measurements, ass measurements, and her recorded BMI. She can just hear it now: come on back, it’s time to weigh in! as her smiling Jenny Craig comrade waives her down the lone hallway towards the scale. Are your pockets empty? No, but my stomach is. The fork moves slower, and misses spaghetti noodles in its droopy scoop. She pushes some chunks of sauce atop the entanglement and dives—fork first—into the bite, scratching against the plate like motherfucking nails on a chalkboard. She drops the fork and the handle clangs against the plate and she gasps with her hands held in the air begging for amnesty. Oh dear Cheesecake Factory, thou shalt grant me amnesty with the power of thy mercy. Save me from my impending doom, from the fascist calorie-counting regime that awaits my starvation. I hate myself more and more each day, each weigh-in, each ounce closer to a size six.

Celebratin’ 35 Years: Section 504 of the Rehabilitation Act of 1973

From Disability Awareness Month at The Ohio State University:

Thirty five years ago the Section 504 demonstration proved to be a watershed event for the civil rights of people with disabilities. Section 504 of the Rehabilitation Act of 1973 adaptive the concept of reasonable accommodation that was originally applied to religious practices to people with disabilities. 504 established and still provides for accommodations in all programs receiving federal funds (education, transportation, arts programs, health care, and more). This landmark legislation was passed in 1973 but was not being enforced because the implementing regulations were held up in Heath, Education and Welfare. The disability community became increasingly frustrated until on April 5,1977, roughly 600 people assembled at the regional office of United Stated Department of Health, Education and Welfare.

The protest in San Francisco became the longest occupation of a Federal Building in U.S. history. After 28 days, Section 504 was signed which was a great victory.

  • April 5, 1977.
  • “The longest occupation of a federal building in U.S. History.”
  • “Malicious unplugging of motorized wheelchairs at night…”
  • Black Panthers sent in sandwiches.
  • 28 days later: 504 was signed.

An Open Letter of Inquiry to the Craftspeople of Thomas Fetterman Incorporated on Behalf of The Alisha Maria Vasquez Crutch-Queen Chip-In Fund

Hello Thomas Fetterman Inc.,

My name is Brooke Willock and I am writing on behalf of my best friend Alisha Maria Vasquez in regards to your handmade custom design crutches.  Alisha has been disabled since birth.  She was born with a short left leg, and had about twenty surgeries between the ages 5 and 15 in her life to lengthen her leg six inches, to be only 3 inches shorter than her right leg (had she not had the surgeries, it was predicted that her left leg would be 12 inches smaller than her right).  Alisha has been on Supplemental Security Income (SSI) since childhood to help pay for health insurance.  For most her life she’s used hospital-grade run of the mill crutches whose tips always break and are so squeaky I always know when she’s coming home from school I can hear her three city blocks away it seems.  She’s starting to hunch over more and is in chronic neck/back/hips/knee pain nearly everyday, and she’s had callouses forming on her palms for years and year.  She jokes that she has callouses forming on her callouses.  We learned about your company in an advertisement in New Mobility: Life on Wheels magazine, and to be honest did not expect to find such beautiful, durable, and serious crutches.  I truly believe that Alisha deserves a pair of crutches just like the ones you all craft.  If she needs these adaptive devices on a daily basis–it’s like a part of her embodiment–shouldn’t she have some of the best kind out there?  She just turned 27 in November 2011 and has a long life ahead of her.  I think these crutches would be great for her.

All that said, I would like to inquire about two things in particular regarding this investment.  If the crutches are custom-made and non-adjustable, then what happens when she wants to wear some high heals and she’s suddenly grown 3-4 inches?  We’re also concerned about any insurance package in the possible instance of such lusty crutches being stolen, like when Alisha goes out dancing and leaves her crutches leaning against the wall near the corner unattended.

Thank you very much for your time and consideration, it is greatly appreciated.  We look forward to hearing form you.

In gratitude,

Brooke Willock

Above:

Custom Wooden Underarm Crutches by Ed Openshaw

Wood underarm crutches are steam bent and locked in the forms for several weeks to keep the elegant shape.  Ed Openshaw then uses a drawknife to hand form the taper of the crutch.

These crutches come complete with your choice of my Slim-Line or Rubber Underarm Pads.  Be sure to state your choice when ordering.

Poron Crutch Hand Grips have a tough PVC vinyl shell covering a shock absorbing polyurethane closed cell sponge center giving you a comfortable hand grip that is easy to clean and prevents skin sheer.  Your choice of my patented Tornado and Performance gel tips have Absorbalite™ gel polymer inside. Absorbalite™ gel has the ability to eat shock by transforming it into heat energy instead of transmitting it up the crutch shaft into our upper bodies.  Reducing these negative ground impact forces will help mitigate overuse syndrome keeping us vertical into the future.

Ed crafts this classic style wood crutch from hand selected Rosewood, Oak or Rock Maple.”

Above:

Aluminum Underarm Crutches

LiteStix Aluminum custom Underarm crutches are shock-absorbing, durable, silent and strong.

This handsome underarm crutch is made by TiSport and will provide you with state of the art comfort, function and good looks. It is custom made to fit the measurements you supply. Like all our custom crutches they never make a sound because there are no adjustment holes to egg-out and rattle. They are built-to-last and to make you last. The underarm piece is hand fashioned from 1″ aluminum tubing.

Even the handles are welded. They are a generous 4-1/2” wide rather than the standard 4″. The handgrips are my new durable Saddle Grips made with black natural cowhide leather wrapped over a shock-absorbing cellular urethane pad.

My patented Tornado GT or Performance GT gel tips have Absorbalite™ gel polymer inside. Absorbalite™ gel has the ability to “eat shock” by transforming it into heat energy instead of transmitting it up the crutch shaft into our upper bodies. Reducing these negative ground impact forces will help mitigate overuse syndrome keeping us vertical into the future. LiteStix Aluminum Underarm Crutches come complete with your choice of my new Slim-Line or Rubber Underarm Pads.”

Theory in the Flesh: Mixed-Ability Organizing, Access Needs, and Internalized Ableism

“A theory in the flesh means one where the physical realities of our lives—our skin color, the land or concrete we grew up on, our sexual longings—all fuse to create a politic born out of necessity.”

This Bridge Called My Back

Last week at Sins Invalid we had our second mixed-ability conversation.  Sins is a San Francisco/Bay Area based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as members of communities who have been historically marginalized.  Our performance work explores the themes of sexuality, embodiment and the disabled body.  Conceived and led by disabled people of color, we develop and present cutting-edge work where normative paradigms of “normal” and “sexy” are challenged, offering instead a vision of beauty and sexuality inclusive of all individuals and communities.

Our first mixed-ability conversation was about five to six months ago in the fall.  These conversations are internal to the organization, and are co-facilitated by two incredible organizers in the Bay Area: Malachi and Stacey.  Malachi is down for fun shit like justice and ‘is active in organizations serving low-income queer and transgender formally or currently incarcerated people, sits on a few boards, does free consulting for community organizations who are broke but are changing the world and believe that no one should be tossed away’ (from the Burns Institute site).  Stacey aka cripchick is a disability justice activist and organizer for the National Youth Leadership Network, an organization that builds power among people with disabilities between the ages of 16-28 years old in order to support young people in their role as the next generation of leadership in the Disability Rights Movement.  Last fall I collaborated with Stacey in developing a Sins workshop about new media, disability justice organizing, and accessibility.  She facilitated the workshop and I planned and promoted it.

It might be an obvious claim to say that Sins Invalid, as an organization, takes disability justice seriously.  What may not be so obvious is the deliberate labor that must be built in to the praxis of such theoretical frameworks.  This is what our mixed-ability conversations are for: collaboratively building an approach towards increasing accessibility, towards making a space where we can co-exist as uniquely embodied subjects as we work to maximize our own skills—as they are—and develop them as such.  Developing our skillsets as they are in relation to our embodied selves: in a way that is sustainable, accountable, responsible, and interconnected.  This is enormously challenging and ambitious.  I think our intentional inclusion of the co-facilitators shows the ways in which Sins takes seriously that which is otherwise too often irritably dismissed by the larger social justice culture of the Bay Area, and the U.S. more broadly: what it means to do mixed/cross-ability organizing, how, and why.  That said, this is what I have been thinking about: what does it mean to develop our skillsets as they are in relation to our complexly embodied selves—in a way that is sustainable, accountable, responsible, and interconnected—in the context of access needs and internalized ableism?

Four-hour time blocks have been scheduled for each facilitated conversation.  Six people total are involved in this collective dialogue: Patty and Leroy—the fabulous co/founders of Sins, Nomy Lamm, the facilitators, and myself.  Nomy is a queercrip fat Jewish cultural activist.  S/he’s a Sins Invalid performer, and a Creative Writing MFA student at SFSU.  Her fantastical queercrip world-making creativity permeates all that she does as a cultural activist: s/he writes, performs, sings, is a musician, and directs SinsArtist in Residence program.  We meet at ‘Sins Central,’ with homemade goodies in tow.  Patty makes the best chili for us with diced onion and bell pepper, chopped chard stems and carrots, mustard and maple marinated tempeh, pinto beans, tomatoes, oregano from her yard, cumin and a ton of garlic served with sauerkraut, chives, and homemade cornbread.  Theory in the flesh requires that we nourish our flesh, indeed.

I juxtapose access needs with internalized ableism because in the context of disability justice praxis, the two are so bound up with each other in complicated, nuanced ways that to think we can talk about one without the other is simply a mistake—an oversight.  From the disability rights movement of the 70s and 80s, access needs typically fall into a liberal reformist framework, delimiting the radical potential of such a concept.  Certainly this is not to dismiss the hard work, lessons learned, and legislative milestones such as the 1990 Americans with Disabilities Act (ADA).  What I’m interested in thinking about are the ways in which the state works to keep the idea of ‘access needs’ in a single-issue political framework, whereby our imaginations become restricted to thinking about access solely in terms of curb-cuts, ramps and handicap parking.  Clustered together in our meeting space at Sins, Patty makes this crucial point:

“In capitalism, the fact that you have a ‘need’ is like an overall net drain, as though we’re somehow not going to be worthwhile.”

Patty’s analysis politicizes the idea of ‘access needs’ by calling into question the very systems that produce ‘needs’ as net-drain in the first place: capitalist political economy and its construction of disability.  In other words, the normalization of society’s inaccessibility posits ‘access needs’ as an individual problem to be overcome.  Generally speaking, the disability rights movement prides itself on this overcoming through its precarious integration into an ADA-compliant ableist society.

Policymaking and development around societal issues of accessibility and universal design only go so far if we do not ask at least two things: why are people with disabilities systematically marginalized to begin with, and secondly what effects has systematic marginalization had on the subject formations of such a heterogeneous constituency?  Patty’s politicization shows how capitalism not only stigmatizes accessibility in terms of cost benefit analysis but also how through such stigmatization, the bodies associated with access needs become devalued in terms of capitalist ideas of production and worthwhile-ness.  Meaning, neoliberal capitalism renders disabled people second-class citizens, essentially sub-human status.  It is this connection to internalized ableism that I have been thinking about: what does it mean to articulate ‘access needs’ from the standpoint/sitpoint of people with disabilities who have otherwise been subjected to ableist violences that demean the notion of access, and how does this impact mixed-ability organizing?  From here, Patty makes another critical point:

“Internalized ableism is a way to police bodies through shaming.  And then, intersections of race, gender, and class might exacerbate the shaming of internalized ableism.”

This particular moment in the discussion is where my own thoughts are still wading—or, more like treading—in deep ocean water far from the shore with strong currents pushing salt water into my mouth and up my nose as I struggle to keep my head above the tide.

In her recent blogpost “More on radical love- the gift of interdependency,” Wheelie Catholic (Ruth) beautifully illustrates what it means to do mixed-ability praxis.  She writes, “I recall years ago when a friend sent her teenage son over to volunteer to help me with some physical tasks.  He lacked confidence because he was dealing with a learning disability in school.”  Ruth situates her story in the context of access and internalized ableism.  Disability shame is at work here: this young man lacks confidence—feels badly about himself—as though there’s something about him that’s not good enough (according to dominant, colonialist pedagogies).  There’s nothing inherently not good enough about him, he’s only not good enough according to capitalist standards: in order for capitalism to continuously reproduce itself, it needs docile bodies and minds to fill the cogs in its machine.  This shame works to stigmatize his disability so that the violences of ableist subjection and rehabilitative discourses seem justified in the name of for-profit productivity and so-called ‘freedom.’  Ruth explains:

“I told him to concentrate on what he could do well rather than dwelling on what he could not.  Although it’s fine to encourage someone to work on skills, it’s really important to emphasize what they are good at.”

Ruth speaks to the importance of meeting folks where they’re at in terms of maximizing our own skills as they are.  This is a politic born out of necessity.  Feels-like-drowning but then we nourish the pained flesh and catch our collective breath.

Allies Not Excuses

Allies Not Excuses

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?