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.

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

“Phantom Orgasms”: Cripping the “Evolutionary Mystery” of Female Sexuality

This post was also published on Feministing‘s Community Blog. =)

Cripping: like the analytic of “queering,” cripping centralizes disability in analyses that otherwise often remained “normed.”  Importantly, through its critical deconstruction and analytical awesomeness, cripping also tries to make new meaning, or rather, help us understand meanings in other ways that do justice to marginalized experiences.

How do we understand female orgasm?  It is easy for us to resort to science when such a paradox comes to mind–and, of course, it is easy for us to picture the normalized white, nondisabled young female when we try to imagine the possibilities of female sexual pleasure.

Wired magazine is an award-winning site about technology and culture that reaches masses and masses of online users, in the U.S. and globally.  According to Alexa.com, a web information company, Wired is ranked #650 in the world, and #326 in the U.S.  The time spent in a typical visit to the site is about three minutes, with 76 seconds spent on each pageview.

With so much user traffic, what is Wired writing about that’s so captivating?  *Drumroll please* …announcing, the world’s greatest mystery to science: female orgasm.

Female Orgasm Remains an Evolutionary Mystery” – pronounced in big, bold letters as one of today’s main headlines on Wired’s homepage, next to another featured techy article titled, “Amazon’s Future is So Much Bigger Than A Tablet.”  In about 500 words, Wired writer Brandon Keim reports on how the “female orgasm has resisted yet another attempt to explain its elusive evolutionary origins.”  Nearly 100 comments have been posted following the article in the 6 hours since the piece was published.

Look, feminist writing on this topic is old news.  Old news.  We know that “orgasm,” or female sexual pleasure, cannot be explained by science, evolution, and pathology alone.  For science to deduce female sexual pleasure to evolutionary reasoning is in and of itself a hetero-patriarchal move.  But Wired apparently doesn’t realize that (maybe because they’re hetero-patriarchal?).  Plus, the site needs viewers/readers, so it can make more money, I get it, so they pull out an old topic for debate that people love to joke about, yadda yadda, I get it.  There’s “new scientific findings,” etc and etc.

So, in light of all the serious, rigorous research and analyses out there by feminist scholars, activists, and writers (do the research yourself, even though unfortunately Brandon Keim can’t hone his skills to properly research issues he writes about, which is why I am here in attempts to hold him accountable), I am going to take a slightly different spin on my feminist analysis on this age-old mystery of female sexuality.  I am going to crip it.

Science and medicine has a pervasive history of pathologizing deviant bodies (like Black men and women, like women in general, like people with disabilities) and its technologies pursue today.  A classic example of this is doctors trying to use the authority of science/medicine to examine Sarah Baartman’s “oversized clitoris” and attributing her features to pathological Black female hypersexuality.  This pathologization not only masks the root causes of violence against women (and women of color in particular), but justifies it (“she was asking for it”).  Again, lots of radical feminist analysis on this issue of dominant science and female sexuality.  In a similar yet seemingly subtle manner, the article on Wired perpetuates longstanding ideological assumptions of hetero-patriarchy in understandings of sexuality and orgasm.  Brandon writes, “Also perplexing is that many women require clitoral stimulation to achieve orgasm, not penetrative action.  If female orgasms were meant to encourage sex, the opposite ought to be true.”  The opposite ought to be true?  For whom and for what purpose?  Let’s think about definitions.  Who defines what “sex” even means?  What actually constitutes a female orgasm?  How can these definitions be used against us, while be advantageous for others?  And they’re not just definitions.  There’s material effects.

Let me reiterate: lots of feminist work has been done surrounding this issue.  Please do the extra research about this at your expense.  I am going to crip this analysis for two reasons: 1) centralizing disabled women is important and political, and 2) co-thinking sex and disability helps us to re-think dominant notions about sex.

Mainstream hospitals, doctors’ offices, and relations with professional health care workers (such as personal assistants), are some of the most notorious institutionalized spaces of oppression against disabled people.  Moreover, underlying patriarchal ideology in the mainstream medical paradigm (see previous blog post and scroll down to “The Authority of Medicine”) make access to adequate healthcare for disabled women a particularly challenging and oftentimes degrading process.  For example, “Ann explains how, after she became paralysed, she could find no information about sex that was of any use to her; what was available was for paralysed men” (Gillespie-Sells et al 52).  Ann’s experience reflects the hetero-patriarchy embedded throughout medical practices and research: research like that presented by Brandon Keim.  Several studies point to similar conclusions.  For instance, Whipple et al report that the “overall quality [of their postinjury sexuality education by health professionals] was considered poor.  Generally included with information on bowel and bladder functioning, the materials that were distributed were of poor quality, outdated, and usually targeted for men.  The focus of female sexuality education was on giving, rather than receiving, sexual pleasure” (79).  Furthermore, scientist Margaret Nosek reports that many women have “relayed encounters with physicians who either said they did not know how their disabilities affected sexual functioning, said nothing at all, or provided inaccurate information” (25).

There is a general and urgent consensus by women with disabilities that information and resources must be made accessible and available.  However, “lack of information is not the only problem here,” feminist bioethics philosopher Abby Wilkerson argues, “providers’ assumptions may prevent them from understanding the situation” (20).  While adequate and accessible healthcare is paramount, underlying assumptions in the medical model must be simultaneously transformed.  Or else The Female Orgasm will forever remain an evolutionary mystery, and the subjugation of female sexuality will consequently live on.

In the mainstream medical paradigm, the “most common view [of sex] is goal directed” (Whipple et al 69), which, likened to hetero-normative sex, involves vagina/penis contact, intercourse, and the climactic genital orgasm.  Simiarly, Brandon in Wired writes that “the male orgasm is, in evolutionary and practical terms, a fairly straightforward thing — it makes men want to have sex more often, thus continuing their lineage, and is achieved with ease.”  We can see how Brandon assumes that sex is automatically hetero-normative, or, goal directed.  Premised upon goal directed sex, the medicalization of sex and disability requires corrective technologies to perform at best according to such standards.  “Within this framework, [disabled] men…seek penile implants to restore their erections, and women with hip contractures who cannot have conventional intercourse have hip surgery to have intercourse in socially prescribed positions” (Waxman 184).  Failure to rehabilitate “normal” sexual performance renders people with disabilities as asexual beings.

The elusive history of U.S. eugenics underlies much medical research and actions towards disability and reproduction, and permeates in genetic and evolutionary research today.  On selective abortion and disability, feminist biologist Ruth Hubbard notably begs the question, “Who should and should not inhabit the world?” (108).  In a capitalist for-profit economy that valorizes docile able-bodiedness and de-values “disability,” the who should and should not inhabit the world? question seems to prod at the crux of ableist assumptions and oppression.  On the ideology of ability and sex, disability theorist Tobin Siebers argues that “sex may be the privileged domain of ability.  Sex is the action by which most people believe that ability is reproduced, by which humanity supposedly asserts its future, and ability remains the category by which sexual reproduction as such is evaluated.  As a result, sex and human ability are both ideologically and inextricably linked” (139-40).  Thus it is an analytical imperative to unravel and de-link sex and ability so that sexual identity and disability may be reconceived—and so sexuality in general may be understood more complexly.

The rendering of sexual agency within self-representations and medical research by and for women with disabilities re-conceptualizes and re-imagines the possibilities of sex.  Whipple et al explain that “the alternative view [of sex] is pleasure directed, which can be conceptualized as a circle, with each expression on the circle considered an end in itself” (69).  As advocates of this alternative view, Whipple et al produced a study that was “designed to validate the reported experiences of women.”  They “documented in the laboratory that women could achieve orgasm from fantasy alone, without touching their bodies” (70).  Okay, I know this might seem strange at first glance.  Documented women cuming in the lab?  But, at a closer look, I think this lab documentation of hot crip pleasure has potential to disrupt dominant understandings of goal directed sex.  Whipple et al use the tools of dominant discourse to authorize the re-signifying stroke of what it means to orgasm.  Their research findings reflect an emphasis on diffuse sexuality, whereby “pleasure may be heightened by concomitant stimulation of an erogenous zone either above or at the level of injury” (72).  For instance, “Some of us who have no sensation in our vaginas or clitorises find that we can experience equivalent orgasms through sensations in other parts of our bodies” (Morris 89).  Disability rights activist Tessa explains that “[my partner and I] get far more enjoyment from sex than we ever thought possible.  We use mouth and nose and facial stroking a great deal, with back tickling as well…I am very ticklish in certain places and I can get an orgasm from being stroked there (for example, under my arms)” (Morris 89).  Tessa’s orgasm testimony disrupts and challenges dominant notions of goal directed sex, such as that deliberated in Wired.

Whipple et al are clearly implicated within that which they oppose; however they turn dominant concepts of the evolutionary nature of female sexuality against itself by debunking such scientific assertions: “Although it is claimed that women with complete SCI cannot achieve orgasm or that their orgasms are labeled as “phantom” orgasms, subjective reports of women do not support these contentions” (72).  Not only do they re-conceptualize orgasm, but they talk back to the mainstream medical paradigm’s fictitious notion of “phantom” orgasms that has been used against disabled women to delegitimize their sexuality.  Researchers Kaufman et al similarly denounce the use of “phantom orgasms.”  They candidly write that an “excellent example of the way information gets twisted is the term ‘phantom orgasm.’  This was a term that researchers came up with to describe something their subjects reported…The ‘expert’ explanation was that these people were merely experiencing a body memory they knew before their injury” (136).  They finish by turning the tables on the “expert” researchers as the ones who are ill-equipped to explain variations in sexual experiences: “Of course this kind of definition is more about narrow-mindedness of the researchers than what was actually happening” (136).  The mysteries of sex will not be found in genetic coding alone, or evolutionary science studies, that’s for certain.

Works cited

Gillespie-Sells, Kath, Mildrette Hill, and Bree Robbins. She Dances to Different Drums: Research into Disabled Women’s Sexuality. London: King’s Fund Publishing, 1998.

Hubbard, Ruth. “Abortion and Disability: Who Should and Should Not Inhabit the World?” The Disability Studies Reader, Third Ed. Ed. Lennard J. Davis. New York and London: Routledge, 1997. 107-119.

Kaufman, Miriam, Cory Silverberg, and Fran Odette. The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illness. San Francisco, CA: Cleis Press Inc., 2003.

Morris, Jenny, ed. Able Lives: Women’s Experience of Paralysis. London: The Women’s Press, 1989.

Nosek, Margaret A. “Sexual Abuse of Women with Physical Disabilities,” 153-173. “Wellness Among Women with Physical Disabilities,” 17-33. Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Eds. Danuta M. Krotoski, Margaret A. Nosek, and Margaret A. Turk, eds Baltimore, MD: Paul H. Brookes Publishing Co., 1996.

Siebers, Tobin. Disability Theory. Ann Arbor: The University of Michigan Press, 2008.

Whipple, Beverly, Eleanor Richards, Mitchell Tepper, and Barry R. Komisaruk. “Sexual Response in Women with Complete Spinal Cord Injury.” Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Eds. Danuta M. Krotoski, Margaret A. Nosek, and Margaret A. Turk, eds Baltimore, MD: Paul H. Brookes Publishing Co., 1996. 69-80.

Wilkerson, Abby L. Diagnosis: Difference: The Moral Authority of Medicine. New York: Cornell University Press, 1998.

Freaks and Weirdos: On Walking Straight, Walking ‘Normal’

“Walk straight!” my mother commands.  I’m only eight years old, trudging through the shopping mall with my six-year-old sister in tow.  I catch my breath at my mother’s disciplining, let out a soft sigh and roll my eyes.  “Brooke, did you hear me?” she complains.  I keep walking, and for a minute I straighten out my feet, spine, and shoulders into what I have been told is a proper posture, a “normal” way of walking.  Just for a minute, to appease my nagging mother.

My dad tells me a different story.  People who are pigeon-toed are fast runners, and fierce athletes.  I embrace this narrative as an eight-year-old, and take the initiative to out-run any boy at school.  Girls rule and boys drool.  Even my neon-green t-shirt says so.  I play tag-football at recess, and I relish during the elementary-school-wide Field Day.  When I run, I let my legs be as pigeon-toed as ever.  And I even earn a first-place ribbon for it in the fifty-yard dash.

Do I ever trip over my own feet?  Sometimes, yes.  But as a kid, whose dad says it’s cool to be pigeon-toed, I take pride in tripping over my own feet.  I learn to laugh at myself.  Let the self-tripping commence!  I’d rather trip over my feet with an audience than waste my concentration and discomfort on walking straight.

“Walk normal!” my mother shouts.  She switches between saying, “walk straight” and “walk normal.”  According to her and the use of their seeming interchangeability, the phrases are synonymous: walking straight means walking normal.  And walking “normal” is apparently the desirable gait.  “Brooke, I said walk normal,” she reinforces her demand.  This time we are at the grocery store, and I am feeling disobedient.  I keep moving along, pretending like I can’t hear her, and collecting coupons as we stroll down the aisles.  “Did you hear me?” she repeats.  “Come on, you walk like a slob.  Pay attention.”

My dad signs me up for soccer and softball.  I build strong quadriceps and hamstrings.  I go to a summer soccer camp the year I turn nine, and the professional trainer immediately notices the uniqueness of my stride.  I stand out in the group, literally and figuratively.  She teaches me to use my pigeon-toedness to an advantage.  I train hard for a quick, skilled touch to the ball.  I have a mean outward cut, thanks to my pigeon feet—perfect for fake-outs.  And best of all, I learn to kick the ball with the outside of my foot.  Imagine a penalty kick, in front of the goal: the keeper notices I am right-footed and expects me to sweep it across into the left corner.  But my pigeon-toed outside-of-the-foot kick curves it unsuspectingly into the opposite right corner.  Solid shot, like a line drive, slightly curved.  Goal keeper left stunned.  Ever heard of “bend it like Beckham”?  That’s me.

Third and fourth grade pass by, and I’m the class tomboy.  I only wear boy clothes, even boys shoes.  My mom thinks “it’s just a phase.”  If that’s what’ll keep her off my back, then let her think what she wants.  I run amok on the playground each day happy to be picked in the first few by my fellow male team-captains for our kickball pick-up game.  Most of the girls frolic on the swing-set, perform cartwheels through the dry, yellow Sonoran desert grass, or play jump-rope.  Cartwheels and jump-rope set me apart from the other girls—I was never very good at gymnastics or dance, my legs could never plié.  In fact, my legs are capable of quite the opposite.  The few who knew about my amazing inward-turning feet talents would run up to me on occasion, dragging their new friends along.

“Show Sarah how your feet turn in!” Jamie requests excitedly.

“Okay,” I act in accordance: and inward my legs go, my feet nearly facing backward.

“You’re a freak of nature!” Sarah exclaims.

“Yep,” I agree.  And I get back to playing kickball while they scurry off in giggles.

I am ten years old, in the fifth grade.  The drive to the orthopedic surgeon’s office in downtown Phoenix is far from the North Phoenix suburban neighborhood my mom takes pride in raising me in.  Born and raised in a working class Jewish neighborhood in Chicago, she’ll do whatever she must to provide her daughters the socioeconomic privileges of middle class status.  The drive is daunting: my neurotic mother schleps me along, as I am resistant to go.

“Maybe the doctor can fix your feet,” she says from behind the wheel.

I shrug my shoulders, say nothing, and continue staring out the front passenger window of the SUV.  I am truly at a loss for words.  The ambivalence is too stark—one thought process feels a sense of relief at the notion of being “fixed.”  The other thought process, the feeling in my gut, wrenches at the idea.  My mom keeps talking.

“You know, your sister was born pigeon-toed, too.  By then the doctors had come up with corrective baby feet braces.  She wore them the first two years of her life.  They didn’t have anything like that for you, though,” she explains.  I already knew the story; she’s recited it to me countless times.  I even know where she keeps the baby-feet-brace mementos: in the special storage box high in the downstairs closet.  I often sneak down there, climb up into the box, and look at the little braces.  I hold them in the palms of my hands and wonder why science had failed me at birth.

“I know,” I respond to her recitation.  My words to my mother are often short and abrupt.  We pull into the parking lot; the office building is stacked with dark red bricks and has a fountain flowing in the entrance.  No matter the desert drought we’re experiencing.  I pass through the automatic doors, and a whoosh of icy air conditioning slides across my neck.

X-rays—we need x-rays!  The official science technology will authorize the pathologization of my pigeon-toedness.  Was there Latin terminology to name my pending diagnosis?  Certainly there is!  According to the U.S. National Library of Medicine and the National Institutes of Health (very authoritative and all-knowing, omniscient institutions of knowledge production), Metatarsus adductus (MTA) is a foot deformity: the bones in the front half of the foot bend or turn in toward the body.  Deformity? According to my dear friend Merriam-Webster, deformity means: imperfection, blemish: as A) a physical blemish or distortion: disfigurement, and/or B) a moral or aesthetic flaw or defect.  The language at hand reflects how the medical model negatively classifies nonnormative bodies as unfit, defective, or abnormal.  Bodily variations that do not meet standard ableist criteria are viewed as having something intrinsically wrong them that need to be cured.  And yet, the transparent knowledge of x-rays will report my MTA to be more “severe” than this standardized definition suggests.

The nurse practitioner leads me through the maze of hallways to what appears like a series of dressing rooms in a department store.  She slides a curtain open and invites me to step inside.  Her instructions: strip naked, put your clothes in the cubby, and wrap the gown around your body.  Am I complicit in the medicalization of my beloved pigeon-toed legs?  At age ten, I’m only doing what my mother says is best, and what the nurses officially know how to do.  Besides, seeing my own bones against the bright x-ray screen is fascinating and surreal.

Diagnosis: pigeon-toed from the hip down.  Whereas MTA is commonly in the feet and ankles, my legs are entirely turned inward from top to bottom.  First opinion: corrective surgery at the ankles.  This should fix the appearance of walking “normal.”

“So my legs would be turned inward but my feet would be turned outward?” I ask, slightly panicked.

“Yes,” the surgeon replies in his German accent.  “It would be far easier, quicker, and less painful of a procedure.”  Or, you mean, more economically profitable within your capitalist cost-benefit analysis?  Less risky under the choke-hold of private insurance companies?

“But what about sports?  Would this change how fast I run?”

“It’s hard to say,” he says coldly.  “I’ll let you two think about this for a moment while I step out of the room.”

I feel like ducking for cover.  How can I get out of this?  “I don’t want to do this,” I blurt out as my mom reads some pamphlets.  She is startled by my claim.

“Brooke,” she says sternly.  “What about when you’re walking down the aisle?  You don’t want to look like a slob at your wedding, do you?”

My mom excuses me today from my fifth grade summer school program.  She herself has even taken off work.  Second opinion: another orthopedic surgeon’s office somewhere in the sweltering mirage-inducing black asphalt of downtown Phoenix.  X-rays and proper documents are in my mother’s possession.  Our seemingly smooth access to specialized opinions and medicine exemplifies our white socioeconomic privilege, healthcare coverage since birth—my dad a hardworking business man with salary and benefits.  He’d rather be a radio sports broadcaster, he tells me later in my life, it’s his dream job—and believe me, he’d be great.  But sacrifices must be made to sustain the nuclear heteronormative family.  My mother, too, gave up the life of art and design for full-time hourly wage in order to raise her two daughters.  She and I stroll up to the building, and I squint at the brightness of the white walls, inside and out.  Sterile; and the high-ceiling lobby with granite tile echoes our every shuffling sound.  Fake plants hover in the corners.  Wait a second, I recognize this building.  It’s where I go to be tested for my scoliosis.

No more x-rays needed, instead I proceed through a regime of diagnostic assessment.  This doctor is much nicer and I think he remembers me.  Tests, tricks, games: without trying to correct your stride, walk down this long hallway in a straight line.  Okay, now take off your shoes and socks and walk down the hallway again.  Walk backwards.  Side to side.  Jump.  Skip down the hallway.  Jog, sprint, run down the hallway.  Walk back slowly.  Sit up on this table, and let your feet dangle over the side.  Do they normally turn inward like that?  How does it feel when I turn them out like this?  It’s painful?  Uncomfortable?  Okay.

The proposal for cure: corrective surgery, from the hip down.  Either break both legs at once, re-set them, and be in a wheelchair for six months, or break one leg at a time and be on crutches for a year.  After they heal, physical therapy for one year minimum.  “Oh, the last surgeon said he’d go at you in the ankles?  Bad idea.  It’s the entire leg that’s turned inward, not just at the ankle.  I wouldn’t be comfortable with that,” the doctor muses.

And I think about being in a wheelchair for half a year.  I think about bending it like Beckham, the fifty-yard dash, and my impromptu freak-show performances at recess.  I do not, I do not, think about timelessly gliding down the wedding aisle.

I look up and see my mom picking out a date on the calendar with the surgeon, five weeks from now—making sure I’d have enough time to recuperate before my sixth grade year begins.  The doctor pulls out more paperwork and my mom scribbles in the necessary information to secure my upcoming surgery date.  Both legs at once.

It’s family movie-night: dad, mom, me and Britt peruse the “New Releases” wall around the inside perimeter of Blockbuster from A-Z.  Little signs hang in-between every other section in royal blue and mustard yellow, rhyming “Be Kind, Rewind.”  My hand traces across the VHS case for Now and Then, and I admire to myself Christina Ricci’s classic tomboy character.  My eyes fixate on her casual stature, jeans and t-shirt style, hands in her pockets.  I love her face.  And she even gets to kiss Devon Sawa.  I blush as I recall the scene in my mind.  I could never watch this movie with my parents!  Moving along to the next couple letters in the alphabet with Brittany trailing close behind me, we land on the movie Space Jam, starring Michael Jordan and the Looney Toons squad, and cheer in unison at our selection.  Mom gives in; dad willfully supports our decision and secretly buys us a Kit Kat at the check-out counter away from my mom’s obsessive calorie-counting scrutiny.

Sneaking Britt and I our favorite candy is always an under-cover operation for my dad.  My mom doesn’t stop at the legs: she disciplines her daughters’ bodies from head to toe, and my body in particular.  I’m very protective of my sister, so if and when my mom torments her, I fight back with twice the fire.  At ten years old, I’m restricted to fat-free milk (more like milky water), and low-fat, low-sodium wheat thins (adult food already?).  Everything she gets grocery shopping is some combination of low-fat, non-fat, fat free, sugar free, low sodium, low calorie.  My teeth are another project for my mom.  I’ve already had braces across the top row of teeth (when I was 8 years old)—I’ve had retainers, expanders (to crank my molars into place since apparently they were out of place), and a headgear.  A headgear is that contraption in cartoons the super nerdy kids wear and get beat-up for it at recess.  Thankfully the orthodontist spared me from being socially ostracized and prescribed me to lock it in my jaw and around my head immediately when I got home from school until I woke up the next morning.  That lasted about six months, to fix my “cross-bite.”  It’s no wonder my parents won’t be able to afford to pay for my college tuition.  Looking socially acceptable costs a fortune.

Yet my mother’s obsession with the ideal body is not so simple.  On top of achieving the impossible beauty ideal that western society tells us to achieve, there’s other factors that complicate the story.  Not to down-play the power of discourse, certainly the media floods our psyches with misogynistic portrayals of women that affect how we see and treat ourselves.  Popular media is rampant with images that train our minds to be and think a certain way—attempting to attain certain beauty characteristics such as thinness, hair styled, make up, clothes, and more.  This is ableism.  To idealize a particular body and to comply with subsequent disciplining regimes of self-care is what makes able-bodiedness compulsory: the ideal body seemingly within reach yet perpetually out of sight.  In this sense, my mom is in a weight-loss battle with life.  She was, what she calls, obese in high school.  I’ve known this about my mother since I can remember, as she used her own life story for leverage when threatening us before the long, glorious aisle of cascading chips and cookies on our trips to the grocery store.  She will tell me in my teen years that her obesity, in her eyes, meant no high school proms and no dating.  In college, she confesses to me when I’m older, she went on a crackers and diet soda diet (also known as anorexia).

After losing a drastic amount of weight, she joined the frightening world of Greek Life, where she met my father.  I would argue that my mother has chronic anorexia and post-traumatic stress disorder to this day—not to psychopathologize, but I am trying to make a point.  It’s no wonder, her first daughter and oldest child now embarking on the second decade of her fruitful life, that my very presence in the household would be such an inner psychological and embodied struggle for her.  On top of it all, her side of the family (all them Ashkenazi Jews of Eastern European descent) has carried many struggles with obesity, to the point where a handful of cousins and aunts have had their stomachs stapled or undergone gastric bypass surgery.  The legacy of anti-Semitism also embeds itself within our bodies, written on our flesh, passed on from one generation to the next.  Assimilate or die.  Looking “normal,” to my mother, also means decreasing the chances of positioning my body as a target for assault, for violence.  In addition to the painful processes of female subjectification through the discourse of the ideal feminine body, this family genealogy and larger historical context seems to feed and justify my own mother’s chronic self-starvation and traumatic stress, and further justifies projecting her insecurities and psychiatric illnesses onto me through things like abusive corrective surgeries, invasive dental work, and tasteless low-fat wheat thins with a glass of milk water.  At ten years old, I’m hiding a box of double-stuffed Oreos under my bed.  My heart pounds as I eat them furiously alone in my room, listening intently for the sound of footsteps stomping up the stairs.

On the drive home from Blockbuster I consider the implications of my impending surgery.  Will I ever be the same again?  What will Brittany, my kid-sister, think?  What about when you’re walking down the aisle?  Walk straight, walk normal.  Concentrate on walking straight.  Practice.  You look like a slob.  There, that’s better.  Is that so hard to do?  What about your wedding when you’re wearing high heels?  Concentrate.

We pull into the driveway, and the garage door closes behind us.  I can hear Barclay, our family-dog (a brown and white Shih-Tzu), whimpering and scratching the walls in excitement in the laundry room upon our arrival.  I squeeze through after my mother to make sure he does not escape into the dusty, hot, two-car garage stacked with bicycles, storage shelves, and bins full of sports equipment.

“I’ll make the popcorn!” my mother announces.  This gesture excites no one but her, and maybe the dog, because, my dad, Britt and I are butter-lovers, and my mom, well, I’m sure you can guess the way she preps her popcorn: plain.  Plain: no salt, no buttah, nada.  Um, what’s the point?  I might as well snack on leftover cardboard boxes.

The movie begins and we dim the lights around the couches.  Brittany and I move down onto the carpeted floor to sit closer.  Michael Jordan gets sucked, literally, into Looney Toon land and the silly basketball adventures begin.

“Brooke!” my mom shouts in a whisper.  “Don’t sit like that.”

I’m feeling defensive after my inner dialogue on the car ride home.  “Leave me alone!” I spit bitterly back at her, over my shoulder.

Don’t sit like that,” she snarls.  I watch Michael Jordon’s distinct pigeon-toed stride across the court as he approaches Bugs Bunny.  “Sit cross-legged.”

“I can’t!” I shout.  “It doesn’t feel good.  This way is more comfortable.”

“Wendi, leave her alone,” my dad murmurs.

“David!” she exclaims in disbelief, slapping her knee for effect.  “The way she’s sitting just makes it worse.”

“She’s fine,” he says.  “MJ didn’t turn out so bad.”  And he leans over to tickle my mom in the rib.  She tries her hardest not to laugh, not to smile, not to change her ways.

My mom is frantic, getting cold feet, having second guesses, wondering if she should have me go through with the surgery.  She barges into my bedroom, and I’m sitting at my desk reading Nancy Drew.  Scrounging through the disarray of the clearance section, I found a Nancy Drew six-pack of the first six volumes at the bookstore that my dad takes me to, and the books they’re all in shiny hardback bind.  I love the smooth hard cover and the pointy edges protecting the crisp pages inside.  Like fresh dollar bills, the texture almost the same.  I love the sound the crisp, fresh, one-dollar-bill pages make whenever I turn one over.  The beautiful sound of paper felt through my fingertips.

“Brooke,” she says to me, her urgent tone pleads that I place the bookmark in and set the enthralling mystery aside.  “Do you want to have the surgery?” she asks me, for the first time.  For the first time.  She finally asks.  Maybe she wants sympathy, I think she wants this because I can hear it in her voice, that rare tone my mother gives when she’s asking for sympathy, almost asking for forgiveness but not quite articulating that she’s sorry.  No she never says she’s sorry.  I can’t give her sympathy, even though a small part of me wishes that all of me could, and instead I give her anger.  How could she now, just now, finally ask me?  After all this?  She expects to put the burden on me, now?

The skin on my arms it prickles and the hairs they stand up in solidarity, ready to protect me.  Tiny little hairs, fierce, erect, ready to fight, my teeth, they clench and grind and I want to answer her question but I am so shocked and angry that I find myself in silence, I release the strain of molar against molar and find my mouth open, my jaw ajar.

“Do you want to have the surgery?” she asks again, as though maybe I didn’t hear her the first time.

Do I want to have the surgery? Do I want to have the surgery!  I want to shout it, I want to scream it.  To me it’s a crude rhetorical question, an insult, a spat in the goddamn face.  But I can’t even say a word.

Third opinion: doctor’s office not quite an office, but more like a den, a study den, with a lower ceiling and rustic wooden furniture.  A dark, burgundy wood that invites me to sit and ponder thoughts, deep thoughts, surrounded by lots of books in a dark burgundy wooden bookshelf full of lots of crisp, beautiful-sounding pages.  The doctor—an older white man with white hair and a white facial beard with eyewear like my poppy, the kind with large lenses and thin bronzed wire frames—asks me to sit up on the patient’s table.  He squints at the x-rays illuminated behind my head.  He squints at them for a brief second, glances at my chart, then looks over at me.  My mother, she stands next to the patient’s table, waiting anxiously for any word that might drop out of the doctor’s mouth.  I know she needs the reassurance, I know she needs a doctor to tell her that I don’t need surgery.  I couldn’t bring myself to say no to her.  Maybe he will, I know she’s hoping he will.

“So tell me why you’re here,” the doctor says, to me.  To me!

“Um, I’m pigeon-toed,” I answer.

He looks squarely at me and pauses, then remarks, “I see,” with a certain curiosity, like we’re in a Nancy Drew mystery—detectives putting the clues together one by one.

“And is there something wrong with your pigeon-feet?”

I shrug my shoulders.  “I can run fast at school!” I proclaim, my eyes open-wide from the thrill of speaking my pigeon-toed pride aloud.  “And I’m good at soccer.”

“Mhm,” he recites like a line from Sherlock Holmes.  “Do you ever trip over your feet?”

“Well, yeah, sometimes I guess.  But not very often at all.”

“Do kids make fun of you at school?”

I never really thought about it like that before.  “I don’t think so.”  The doctor, talking to me, asking me questions, is a different experience for me than with the other orthopedic surgeons.  The other doctors, they so readily diagnosed me, so readily assessed and prescribed corrective surgery.  All it took was one visit per doctor—and they’re ready to cut.  To turn me into a cyborg—I’m both disturbed and fascinated by the thought, not quite sure what it all really means.  Both surgeries, either at the ankles or the hips, would require hardware screwed into my bones.  Would I beep through security at the airport?  Would I have scars in my hips, in my ankles, forever marking the authoritative hand of medicine on my flesh?  Where is the line drawn between corrective surgery for ‘pathological deviance,’ and plastic surgery for cosmetic purposes?  Where would my corrective surgery fall between such distinctions?  Did I really have something wrong with me that anesthesia, sharp blades, bolts and screws, lots of blood, lots of stitches, lots of scars, and lots of post-op pain could “fix”?

First opinion.  Second opinion.  Now third opinion.  My mom, she hardly speaks this go around.  The doctor hardly asks her a thing.  This changes my experience with and approach to medicine and doctors entirely.  This doctor wants to know how I experience my body.  He does not want to know what others’ perceptions are of me, per se, like that of my own worried mother, but rather, how I experience others’ perceptions.  For instance, do kids at school make fun of me?  It depends.  In some ways yes, in some ways no, but kids are mean to each other regardless since we’re engrained from such an early age that there are indeed freaks and weirdos: like nerds, like booger-eating slimy outsiders, like chubby dweebs, like Jews, like the one Black kid in the whole fifth grade, like brown-skinned non-native English speakers, like the masturbating child, like the kid who is left-handed, like the kid with a lazy eye, with a speech impediment, with a stutter, with a runny nose, with too much spit, with a big nose, with big ears, with dyslexia, with duck feet, or, with pigeon-feet.  All us freaks and weirdos: being stared at, regulated, disciplined, feared, loathed, despised, pushed into isolation—all for being who we are perceived to be, not for being who we say we are.  So here I am, saying who I am, and I demand that you listen, listen hard, and rip out those presuppositions, discard your fear, and re-perceive the idea of me and my freakery and all those other weird kids who sit or stand beside me, next to me, and with my pigeon-feet.

“Okay,” he ponders as he reads over my chart a second time.  “Does being pigeon-toed hurt?  As in, physically, does it give you any physical pain?”

I think for a moment.  “Only when I’m sitting criss-cross-Apple-sauce on the floor,” I respond.  “It’s the way it turns my legs, it makes them sore.”

And then, the question is asked.  He asks, “do you want to have surgery?”  His question provokes much deliberation in my head, the context so different from when my mom asked, and I deliberate as I attempt to speak it out loud, as my mother chimes in, as the doctor listens hard, as I try to figure out how to say what I want to say, as I realize that the doctor has not suggested once that my legs need to be fixed, and this realization gives me the confidence to say, No.  No I do not want the surgery.

The doctor listens and responds to my spoken thoughts, “Alright then.  I do not recommend any surgery.  You are fine just the way you are.”

Left - kid sis; right - pigeon-feet.

Body Out of Control in the movie: Love and Other Drugs

What can I say?  I have a soft spot for Hollywood films that attempt to counter pervasive stereotypes of disability.

Love and Other Drugs (aka LOD) stars hotties Jake Gyllenhaal and Anne Hathaway—and both of their characters have disabilities.  Who woulda thought?  Nowhere in the film’s promotional campaign will you find clues about disability, except for a five second blip in this two-minute-long movie trailer.  The brief synopsis on the DVD case says nada about disability or illness:

“Academy Award Nominees Jake Gyllenhaal and Anne Hathaway co-star in the “smartest, sexiest and downright best sceen-melting romance of the year.”  Hathaway delivers an unforgettable performance as the free-spirited Maggie, who meets her match in a charming Viagra salesman named Jamie (Gyllenhaal).  Maggie and Jamie leap into a no-strings-attached affair, but no matter how hard they try to keep things “casual,” they can’t help falling under the unfluence of the ultimate drug…love!”

Little does the viewer know, Maggie has early-onset Parkinson’s disease, and Jamie has Attention Deficit Disorder: both impacting the characterizations of Maggie and Jamie and the film’s storyline in significant ways.  I guess disability is supposed to be the unexpected twist—the clencher, the all-revealing “tragedy” as the true test of love.

I could write about the nudity in the film, like Entertainment Weekly, NY Mag, Newsweek, or the Huffington Post.  Perhaps I should talk about the movie’s hot crip sex (like when Jamie makes love to Maggie while she convulses in symptomatic tremors), or about Maggie’s experience with disability identity at the “unconventional” support group for folks with Parkinson’s.  Both issues of representation are important and worth considering, but I’ll leave that commentary up to Disability Arts Online blogger Alison Wilde in her review of LOD.  Wilde also touches on other prominent disability justice themes, such as reciprocity in love and care, mutual respect, and interdependency.

But what about healthcare, medicine, and science?  Maybe the authority of medicine is so normalized that few people care to expose it.  Not to discredit Wilde, I like her framing of the film’s approach to healthcare inequality:

“…the lampooning of the relationship between drugs salesmen and medical professionals and their power also shaped a number of poignant scenes, a number of vignettes powerfully illustrated the consequences of inequalities in health care.  For me this added extra power to minor details of the film.”

Yet, I disagree with Wilde that such relationships or vignettes illustrating healthcare inequality in LOD are “minor details.”  For me, the myth of control and the authority of medicine are major underlying assumptions of the movie that enable the nondisabled viewer to leave the flick with a sense of relief—a relief of anxiety that is all too prevalent throughout mainstream Hollywood films portraying disability.

So, I just mentioned three things: 1) the myth of control, 2) the authority of medicine, and 3) a relief of anxiety.  Let’s break these three concepts down so I can expose how the film relies on, rather than undermines, ableism.

  1. The Myth of Control: “A major obstacle to coming to terms with the full reality of bodily life is the widespread myth that the body can be controlled” (Wendell 93).  The bottom line here is that we think we can control our bodies—and we’ll do whatever we can and whatever we have to in order to control them: especially from disease, illness, accidents, pain, disability, and death.  The myth of control makes us think that if we try hard enough, if we raise enough money for more scientific research, that we can and will somehow be able to prevent things like disease, illness, accidents, pain, disability, and death.  In a more subtle sense, we try to control our curly and frizzy hair so it’s straight and smooth, we try to make wrinkles in our face disappear, we try to control the appearance of cellulite, we try to control the color of our teeth so they’re glowing like Ross’ Chiclets on Friends, we shave our face, our legs, our underarms in attempts to control hair growth.  These attempts to control and perfect our bodies are typically effects of cultural standards that determine what is desirable, ideal, or even, normal.  Normal?  Some might call this normalcy, some might call it normality, others might say normativitiy, and few might throw down the phrase “compulsory able-bodiedness.”  Regimes such as your entourage and application of toiletries every morning is an example of the compulsory nature of normativity, and self-care/control.  How does this relate to disability?  Feminist philosopher Susan Wendell puts it this way: “The disciplines of normality…are not only enforced by others but internalized.  For many of us, our proximity to the standards of normality is an important aspect of our identity and our sense of social acceptability, an aspect of our self-respect.  We are unlikely to notice this until our ability to meet the standards is threatened in some way.  An injury or a prolonged illness often draws the attention of non-disabled people to this previously unnoticed facet of their self-images” (88).  Medically speaking, the compulsion for The Cure (the end-al be-all Cure for disease, sickness, ageing, injury, pain) drives seemingly all funding and resources in scientific research for the purpose of fixing what we fear might happen to our bodies.  You might be wondering, what’s so bad about trying to find a cure?  Why I’m glad you asked.  This leads me to my next point.  But one more thing—don’t forget why it’s called “The Myth of Control.”  It’s because, it’s a myth, and maybe some things just can’t be controlled.  Disease happens, illness happens, pain happens, accidents happen, zits happen, yellowish teeth happen, curly hair happens, and death is inevitable.  Why are we so afraid of these things happening to us?
  2. The Authority of Medicine: So, what’s so bad about trying to find a cure?  In my view, there is nothing intrinsically bad about it.  I like how Wendell frames one way of thinking about it: “Ironically, by creating a culture of individual responsibility for illness and accident, the myths of individual control and medical control through cure discourage any search for possible social and environmental causes of diseases and disabilities, thus inhibiting efforts to prevent them” (106).  It is not the prospect of a cure in and of itself that is up for debate, but it is how the cure functions in the context of medical authority and the myth of control.  For instance, how might dominant culture’s emphasis on the cure reinforce stereotypes of disability?  This is where the medical model of disability, or the medical model of bodies out of control, comes in:

    "I want to help the handicapped! …according to the Medical Model of Disability"

    Dr. Ken says: “I invent and administer tests to classify disabled people according to what I think are their impairments.  Then I carry out experiments to try to make them more like me.  If I fail, I try to identify and kill them before they are born.”  Through the medical model and its authority, we believe that something like disability is an individual tragedy, a pathological case to be officially diagnosed, viewing impairment as something that is inherently wrong with someone that needs to be fixed, or, cured.  Diagnosis: difference.  Critiquing the authority of the medical model and departing from it, disability justice activists and scholars utilize the social model of disabilityto understand how insidious dominant meanings of disability are produced and enforced:

    "I want to help the handicapped! …according to the Social Model of Disability"

    Xena Warrior Disabled Barbie Activist says: “I fight against prejudice, discrimination and disabling environments.  I fight for equal rights legislation and better health and social care provision.  I also fight to eliminate the poverty, abuse, violence and war that cause the majority of impairments.”  The thing that I want to call attention to here is the normalization of medical authority: we take third-person scientific fact as natural, objective truth (Wendell 121).  These supposed truths frame how we understand our own bodies, and our complex experiences and realities of embodiment.  Wendell writes that “those of us who have chronic illnesses and disabilities, and those who are dying of incurable illnesses, symbolize the failure of medicine and the Western scientific project to control nature” (96).  Fear of disability is rampant because the very presence of people with disabilities is proof that the myth of control is a myth.  Given that the myth is so deeply embedded within dominant medical-scientific culture and our own psyches, it is hard for us to collectively acknowledge and value the fact that human existence and lived embodied experience occur in unlimited ways.  We tend to measure humanity solely through the medical model’s fictitious norm of what it means to be healthy, of what it means to have a body that is “able.”

  3. Relief of Anxiety:  In terms of film or literary analysis, “alleviating anxiety” is a device commonly employed in mainstream narratives when grappling with disability in the plotline.  Code of the Freaks, a work-in-progress documentary film, discusses stereotyping of disability in Hollywood and its use of this particular device.  More or less, this device functions to relieve our fears that disability or chronic illness will happen to us.  It does this by projecting the supposed “tragedy” back onto the individual, away from us.  I think of the “relief of anxiety” device as effecting a film’s plotline in four different manifestations: 1) the disabled character/person is killed off by society because s/he is so hideous and monstrous that it must be done (e.g. Frankenstein, 1931), 2) the disabled character kills her/himself, commits suicide, due to the all-too-common terrible sentiment that “I’d rather die than live with a disability” (e.g. Million Dollar Baby, 2004), 3) the disabled character/person dies from complications due in part to their disability (e.g. All of Me, 1984), and 4) the disabled character is cured (e.g. Heidi, 1937).  What do all four aspects have in common?  Disability is somehow eliminated.  What does the elimination of disability subliminally convey to the viewer?  That disability is so repulsive, awful, and miserable to the point that we must get rid of it entirely—which links back to the first two concepts: The Myth of Control and The Authority of Medicine.  Whether we realize it or not, this movie and several Hollywood films portraying disability, carry and deliver these concepts through the device of alleviating anxiety.

Jamie loves Maggie, Maggie loves Jamie.  Despite the sometimes awkward acting, cheesy sentimental music, and redundant clichés of love expression (such as the climactic bus chase scene, and the “I’ve never told anyone I’ve loved them before” panic-attack-inducing line), I appreciate the film’s attempt to challenge stereotypes of disability, and to reconcile the complexities of chronic illness and intimate long-term relationships.  However this reconciliation at the end of the movie, when Jamie says he’d carry her around if he had to (which honestly, so sweet and potentially powerful), is only reconciliation: the action of making one view or belief compatible with another.  To me, this is somewhat analogous to the sentiment: “I tolerate gays; I accept them for who they are.”   For example, the toleration of “gays” is compatible with the reformist agenda to legalize gay marriage.  Similarly, Jamie’s ableist assumptions are reconciled with Maggie’s harsh realities of embodied experience: he will tolerate her disease, even to the point of thinking he accepts her for “who she is.”  This is where the film is enormously disappointing: Anne Hathaway’s character seems to have so much potential to undermine ableism.  I kept waiting for it, and waiting for it, but ultimately the framing of the film from Jamie’s perspective takes the cake.

For me, there are two main aspects of the film that may seem like “minor details” to others which reinforce ableism rather than uprooting it.  The first and more obvious aspect is the sequence of scenes where Jamie searches for clinical trials and scientific research with fervor.  He will do anything to cure, fix, make better his love, rather than focusing on how to make her life more livable with incurable illness.  Maggie and Jamie drive hours to the next major city, they fly across the country, they spend lots and lots of money.  Wendell’s point relates to this part of the movie all too well: “For people with life-threatening illnesses, pressures from their loved ones to seek a cure can consume their remaining time in medical and quasi-medical quests” (98).  The strain of these quests on their relationship is evident when Maggie pushes back, and questions whether or not Jamie can love her if she shows no hope of ever getting “better.”  I wish the plot lingered here, and rendered more complexly the realities of this struggle.  But apparently a bus chase is supposed to suffice.

And then they live happily ever after, right?  Maybe to some.  But think about it: the movie ends with Jamie quitting his job as a Viagra salesman, in order to apply and attend medical school.  This is my second point.  The movie ends with Jamie as a med student.  A future M.D., a doctor, a researcher, a person with authority in charge of clinical trials.  This end-of-the-movie twist, an epiphany if you will, reinforces the myth of control and the authority of medicine over the ways that we experience and understand our bodies.  Wendell argues that the “very availability of a virtually unlimited number of treatments protects the myth of control from evidence against it, because there is always another method of control to be tried.  People with disabilities or incurable illnesses often find that long after they have accepted the conditions of their bodies, their friends and acquaintances want them to continue looking for cures” (97).  Jamie becoming an M.D. is an indirect way for him to continue searching for a cure without directly forcing Maggie to attend an onslaught of trials and doctor’s visits.  By becoming an M.D., Jamie takes a different avenue in attempts to control that which in uncontrollable.  Moreover, by becoming an M.D., Jamie relieves the audience of its anxiety, its fear of disability, with the promise that he will triumph with his new life endeavors—of curing (fixing, making better) Maggie, who he loves.  It is touching.  But I wish Jamie would just stay a Viagra salesman, and face the perhaps harsh but necessary reality of bodies out of control.

“We need to recognize that scientific Western medicine’s quest for prevention and cure has prevented and relieved, but also caused, a great deal of suffering.  We need to recognize that most people experience disability in the course of their lives.  We need to demand that medical practice devote more attention and resources to improving the quality of patients’ experiences, to helping people to live with incurable physical limitations and suffering, and to enabling those who are fatally ill to die as well as possible.  We need to integrate the experience and knowledge of people with disabilities and those who are dying into the mainstream of our cultures, into our concept of life as it is ordinarily lived.  We need to learn to accept that people are not always able to control their bodies and to stop holding them responsible for doing the impossible.  In short, we need to become more willing to face the realities of bodily life.”

—Susan Wendell, The Rejected Body

Work Cited: Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge, 1996.