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

Disabling the “Choice Paradigm” in the Abortion Debate and Enabling Complexity

Okay, so I am trying to contain my excitement.  But who am I kidding?!  Enerfly, a new social networking and social movement site for disability, just released my first e-publication outside of my sweet WordPress blog.  HOLLA!

Here’s the awesomeness, re-posted for your reading pleasure and for the sake of my own little e-archive:

The Pro-Life Action League made their annual appearance at my campus this week.  As they were obstructing my path to class, I held up a folder against my face in protest while I quickly walked passed.

Pro-life versus pro-choice.  Reproductive rights versus reproductive justice.  What’s the difference?

Native sovereignty activist and scholar Andrea Smith argues that “a reproductive justice agenda must make the dismantling of capitalism, white supremacy, and colonialism [and ableism!] central to its agenda…We must reject single-issue, pro-choice politics of the mainstream reproductive rights movement as an agenda that not only does not serve women of color [and women with disabilities] but actually promotes the structures of oppression which keep women of color [and women with disabilities] from having real choices or healthy lives.”[i]

Native sovereignty issues are also disability justice issues.  The potential for radical coalitional work here is profound.  But, more on that later.

When it comes to disability, the mainstream reproductive rights movement simply isn’t enough.  Not only is it not enough, but as Andrea Smith points out, it actually promotes the structures of oppression by not confronting the systemic root causes of disabled women’s health and wellness.

Can disabled women be mothers?  Can nondisabled women, or disabled women, knowingly carry to term a fetus with “defective genes”?

With the historical legacy of eugenics, and interlocking systems of oppression, these are difficult questions that the reformist binary of pro-life vs. pro-choice cannot “answer.”

Caroline, a wheelchair-user, reflects on her experiences with doctors regarding reproductive issues: “To acknowledge what I feel I have been denied is almost too painful to think about.  It’s safer to tell myself that I don’t want to have children anyway.”[ii]  Among the friends, family, and physicians of disabled women who were surveyed in a research study, three fourths “believe that maternal disability is cause enough to restrict childbearing.”[iii]

The struggle with reproductive issues has been a significant aspect of disability justice projects since the 1970s disability rights movement.  Ujima, disabled at the age of twelve, testifies in her early forties, that “there are people out there who think that they have the right to tell you that you shouldn’t [have a baby] simply because you’re disabled.  Many years ago I had an abortion that I didn’t really want because everyone I told…all said that it would be wrong for me to go ahead with it.  At the time I remember my doctor telling me that I should consider being sterilised so that I wouldn’t make the mistake of having another unwanted pregnancy, but the fact is that I did want it and have been wanting to have another baby ever since.”[iv]

Many disabled women have spoken out against the forced sterilization and abortions they have experienced, and against the nonconsensual use of Depo-Provera, a birth control hormone injected every three months, by both doctors and personal assistants.  Yvonne Duffy, a self-identified  “severely disabled” wheelchair user who contracted polio at age two, “was particularly disappointed” when she learned that a “prominent advocate of sex education for the [cognitively disabled] suggested injections of Depo-Provera as birth control for those of us who cannot manage it [sexual intercourse, menstruation and changing pads/tampons regularly] for ourselves.”[v]

The elusive history of U.S. eugenics underlies much medical research and actions towards disability and reproduction, and permeates in genetic research today.  On selective abortion and disability, feminist biologist Ruth Hubbard notably begs the question, “Who should and should not inhabit the world?”  Hubbard examines current situations surrounding selective abortion where pregnant women are required to sign either “yes” or “no” to prenatal testing which tests women’s fetuses for various “disabilities.”[vi]  If a woman “chooses” to test, and her tests are “positive” (Hubbard discusses the major discrepancies and unreliability of many of these tests in terms of their results), then the woman is left to “decide” whether or not to “burden” society with a child with a supposed disability.  Hubbard discusses the underlying eugenic ideologies at length and how today’s rhetoric “of the concern for the quality of life” in genetic testing and research, and in many other public sectors as well, is like the “arguments about lives not worth living.”[vii]  Ever heard the horrible ableist statement, “I’d rather die than be disabled”?  Such sentiments are directly reflective of the root causes that reproductive justice campaigns need to tackle.

Importantly, disability reproductive justice campaigns and activists need to be vigilant about co-optation by nation-state and pro-life interests.  Just on September 2, 2011, The Pro-Life Action League published an article praising a mother for “choosing” life for her conjoined twins.  This is a stark example of pro-life co-optation of disability reproductive justice issues.  The rhetoric of “choice” is individualist language that functions to mask underlying structural oppressions which greatly impact reproductive issues for disabled women, women of color, and nondisabled women with “disabled” fetuses.  Native sovereignty activist Andrea Smith argues that the

“consequence of the “choice” paradigm is that its advocates often take positions that are oppressive to women from marginalized communities.  For instance, this paradigm often makes it difficult to develop nuanced positions on the use of abortion when the fetus is determined to have abnormalities.  Focusing solely on the woman’s choice to have or not have this child does not address the larger context of a society that sees children with disabilities as having lives not worth living and that provides inadequate resources to women who may otherwise want to have them.”[viii]

It is not simply a matter of “choice” for abortion or for life; several critical factors come into play such as the historical context of eugenics, structural issues such as healthcare, educational opportunity, community support and accountability, which, although the woman “chose” to have her conjoined twins, by staying within the paradigm of choice The Pro-Life Action League does not take into account root causes that shape reproductive issues especially surrounding disability.

Image featured in my Enerfly article

[i] Smith, Andrea. Conquest: Sexual Violence and American Indian Genocide. Cambridge, MA: South End Press, 2005, 104-105.

[ii] Shakespeare, Tom, Kath Gillespie-Sells, and Dominic Davies. The Sexual Politics of Disability: Untold Desires. London and New York: Cassell, 1996, 15.

[iii] Waxman, Barbara Faye. “Commentary on Sexuality and Reproductive Health.” 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, 182.

[iv] 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, 12.

[v] Duffy, Yvonne. All Things Are Possible. Ann Arbor, MI: A.J. Garvin and Associates, 1981, 24.

[vi] 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, 114-18.

[vii] Hubbard, 117.

[viii] Smith, 100.