Eva Feder Kittay: 2014 Guggenheim Fellow

Eva Feder Kittay, Distinguished Professor of Philosophy at Stony Brook University and Senior Fellow of the Stony Brook Center for Medical Humanities, Compassionate Care, and Bioethics, has been awarded a Guggenheim Fellowship to complete a book tentatively titled Disabled Minds and Things that Matter: Lessons for a Humbler Philosophy. The prestigious fellowship, which places Professor Kittay in the company of many illustrious names, which also includes a lengthy list of noble prize laureates (Czeslaw Milosz being a particular favourite of mine), was established in 1925 and is granted to individuals whose work makes substantial contributions to education, literature, art, and science. Professor Kittay’s work pushes philosophical discourse beyond the inadequate rationalistic framework that has traditionally been utilized to measure the worth of persons. She urges that actual relationships of care and love characterize who we are and why we are morally considerable. Equipped with both the argumentative and analytic tools of a philosopher and the personal experience of being a parent of a child with severe cognitive disabilities, Eva Kittay is in a unique position to play the part of a competent judge whose insights have great philosophical, and more saliently, educational value. Although Disabled Minds and Things that Matter: Lessons for a Humbler Philosophy will be a philosophically rigorous contemplation on the place of disability in philosophical discourse, it will nevertheless be aimed at the educated lay reader, meaning that it will not only shape future philosophical projects, but will also serve to educate the public.

Why is a focus on disability important to the future of philosophical research? Taking severe cognitive disabilities into account when formulating questions in philosophy will force us to reframe both traditional and contemporary inquiries. For example, the rationalistic model of personhood inherited from Aristotle and Kant as well as the numerous individualistic psychological accounts of diachronic personal identity that have been developed since Locke’s Essay Concerning Human Understanding will have to give way to other, more inclusive models and accounts that better represent the relational nature of memory, personhood, and moral status of human beings. Relational personhood and an extended account of personal identity, which is the focus of my own research is indebted to such fundamental reframing of philosophical questions by placing the interests of individuals with severe cognitive disabilities at the centre of our philosophical contemplations regarding the moral status of persons. If placing disability at the centre of philosophical inquiry helps philosophy transcend its current theoretical bounds, then not only is Eva Kittay correct in suggesting that disability is at the frontier of philosophy itself, but Professor Kittay and those her research project inspires to work at the intersection of philosophy and disability studies are forging a new philosophical direction in the time honoured spirit of philosophical innovation and transformation.

Shades of Personhood: A Worry About Definitions of Death for Transplant Purposes

Although brain death, which is an “irreversible cessation of all the functions of the brain, including the brain stem” (see article), has been used as a pretty safe definition of a person’s death, transplant advocates are calling to revive a different definition of death, namely cardiac death or circulatory death, which is “an irreversible cessation of circulation and heartbeat and breathing” (see article).  In such cases, CPR is not performed and after a short wait, organs are removed.  However, the problem is that there is no guarantee that the heart won’t restart by itself, so the question of how long to wait becomes a tricky one.  Some hospitals wait five minutes while others only two.  The trouble with waiting too long is that organs cut off from a nourishing blood supply cannot last very long.  Surgeons in Michigan are starting to place donors on ECMOs (heart-lung machines) even before the donor’s heart stops beating.  This ensures that the organs are not deprived of nourishment, but it also further blurs the line between life and death.

The Michigan doctors say the approach is a blessing. Family members have more time to say goodbye and a chance at getting some solace from their loss.  “They are so pleased that the last act of the person’s life on Earth was to donate organs and save other people’s lives,” Punch said.  Transplant surgeons say the chance to turn a death into an opportunity for life is a godsend. (See article)

Defining death is not as straight forward as it might seem.  Of course, there are certainly clear cut cases.  Taking a stroll through a cemetery reveals hundreds such cases.  However, the moment that marks the exact boundary between life and death is much harder to define.  Perhaps this is because there is no such moment, death being a process of a certain duration.  Technological advancements such as ECMOs, however, can extend this process far beyond the short period it would normally take.  Are such patients essentially in a state of dying, but not really dead or are they essentially alive due to the fact that the process of dying had been interrupted by the machines?

Just because machines are doing the breathing does not mean that the person is dead.  By that definition, artificial hearts or pace makers would make the people who have them into walking corpses.  Also, just because someone is in a coma, does not mean that they are ready to be harvested for organs.  Perhaps an argument for the practice of recirculating blood in order to keep organs nourished hangs on the irreversibility of the donor’s condition.  But again, not only is “irreversibility” not a certainty in all cases, but irreversibility itself does not seem to be reason enough to harvest organs from a living human being.  We don’t generally think that extracting organs from patients in permanent vegetative states is permissible, even if such states are by definition irreversible and if such patients happen to be organ donors.

This is certainly a tricky question, especially since the patients involved are donors who have agreed to donate their organs after they die, but unless their advance directives state that organs are to be extracted while alive as long as it happens at the discretion of the doctors or family, the problem with the definition of death will continue to be an issue.  Citing the number of lives that can be saved by the practice of extracting organs from a living person (even if irreversibly damaged), should not be used as an argument for such a practice particularly since the same argument can apply to extracting organs from any living person (I have in mind the classic objection to utilitarianism here).

I am not entertaining slippery slope worries, but I think that it is important to stress that the subtle details regarding our practices of extracting organs for transplantation should be thoughtfully considered, reasoned through, and explained.  One moral worry I have is that such patients may not be viewed as persons by doctors eagerly waiting to extract vital organs in order to save the lives of other (more obvious?) persons.  Can what the Michigan doctors are doing be done with a genuine air of respect and dignity that is owed to persons?  Perhaps it can, but the reasons for such practices must reflect this respect and dignity.  I am simply not convinced that, at least in all cases, merely focusing on what the family and other patients get out of it constitutes reasons that are saturated with genuine respect for the personhood of the donor.

What Sorts of People Should There Be? Do the Deceased Qualify?

When the Social Security Act was being written by Congress in 1939, no one thought that it might be possible to conceive a child posthumously.  In 2003, 18 months after the death of her husband, Karen Capato, a Florida resident, gave birth to his (her husband’s) twins (see article).  Robert, Karen’s husband, preserved his sperm in a sperm bank and gave written consent for its use by his wife before he died.

After her husband’s death, Karen applied for social security survivor benefits for the twins, but was denied because Florida laws recognize the eligibility of inheriting property only if the children who are to inherit property are named in a last will and testament.  This apparently also translates into an ineligibility of the twins to receive survivor benefits.  Robert could not have written the twins into his will because he did not know that they were going to exist at some point in the future.  Regardless of whether or not he discussed possibilities with his wife, he had no way of knowing the genders or the number of children he would father posthumously.

There is, to my mind, a question of whether Karen’s twins can really be called “survivors” since they did not literally survive their father.  And since it was Karen’s own choice to have them after her husband was already dead, perhaps counting on survivor benefits for aid was a tad premature and maybe even irresponsible.  These worries aside, however, it is interesting to live at a time when technological advances create such problems for the legal system.  After all, there is no question regarding biological parentage in this case.  Half of Robert’s DNA had been willingly transferred to a future generation.

While thinking about what sorts of people there should be, we think in terms of human variation.  However, we don’t always stop to consider why a variety of humans are “people” in the first place and what exactly makes them into “people.”  It would be difficult (and likely hopelessly so) to argue that a sperm cell is a person.  And yet, at the time of conception, that was all that remained of Robert.  I would think that it would be absurd to insist that Karen’s twins are essentially fatherless (it is true that their father is dead, but it is not the case that they have not been fathered).  It would be equally absurd to think of the doctors who prepared the fertilized egg as fathers (the medical team has no parental responsibilities toward the twins).  Although the twins were not a result of sexual intercourse between Robert and Karen, their conception is an instance of sexual reproduction (Robert’s and Karen’s genetic material is present in equal proportions in the resulting offspring).  So when asked who their parents are, the twins should refer to Robert and Karen and not just Karen or Karen and the hospital staff or even more absurdly to Karen and Robert’s sperm.  So did Robert father the twins?  I’d say he did!  If that’s the case, then does he qualify to be represented under the general question of what sorts of “people” there should be?  When we think about human variation, do the dead count?  I think they do!  If, by recognizing all kinds of people as “people,” we implicitly assume that we have duties toward them, then by making conceptual space for Robert and other deceased individuals (this also includes all of us at some point), we ought to recognize our duties toward the dead.  Perhaps that should inform the court’s decision in the case of the twins even if they are not literally “survivors.”

The Unhealthy Side Effects of Mixing Medicare with Big Business

Cancer drug shortages in the United States are putting lives at risk, especially when treatments require regular dosages over extended periods of time.  Alice Park of Time Magazine writes:

In late February, when Divers called the hospital to confirm Alyssa’s upcoming chemotherapy treatment, the nurse informed her that there was a drug shortage. The hospital couldn’t be sure that there would be enough methotrexate — the cornerstone of therapy for some childhood cancers, including leukemia and osteosarcoma — to treat Alyssa, now 10. Divers was told she might have to reschedule the session; the hospital would let her know. “It made me sick to my stomach to hear that,” says Divers, a former chaplain from Palmyra, Va. “Alyssa was in treatment for over a year already, and the last thing you want to do is add unnecessary delays in treatment, which gives the cancer a chance to catch up.” Divers explains that her daughter’s cancer doubles in tumor load every 34 days, “so you need to hit it again and again to eradicate it.” (See article)

And this is just one of the many cases.  But what is causing these shortages?  Although this is not the whole story (since the big picture is a bit more complicated, including procedural issues with FDA inspections), a substantial portion of the problem is caused by the economics of drug supply.  One thread of the economic story goes something like this: in order to make chemotherapy treatments easier for patients, doctors began offering infusions in their offices rather than in hospitals.  The 2005 reimbursement scheme, however, allowed doctors to be reimbursed at a 6% profit.  The problem was that the reimbursement price lagged behind the market prices by six months, which made the reimbursements lower than what the doctors paid for the drug, essentially pushing some physicians to prescribe pricier brand name drugs.  This, in turn, amounted in lower orders of generic drugs, which further shrank the market.

“In order to gain market share, companies underbid the market to get the business, and it’s a race to the bottom,” says Dr. Len Lichtenfeld, deputy chief medical officer for the American Cancer Society. “Whoever is the last company standing can’t charge enough to make a profit on the drug and to make needed investments to keep making the drug.” That’s what may have happened with the methotrexate that Alyssa Divers depends on. (See article)

To add to this incredible situation, once the drug shortages were publicized, doctors started receiving offers from distributors, with stockpiled stashes of the harder to get drugs, who were very happy to sell the medicines, charging “$800 to $900 per gram for a medication that normally costs $16” (see article).

I guess that one way to respond to this is to blame the government for its untimely reimbursement policy, which certainly makes me wonder (why is there a six month lag in the first place?).  What really puts a bad taste in my mouth, however, is how intimately the production of pharmaceuticals is linked to the administration of treatments that use certain drugs.  When a profession views itself as essentially helping humankind by caring for human well being and health and when the societal respect is accorded to this profession for such reasons, it is more than disheartening to find out how closely some such professionals can resemble mere pedlars of life when viewed in light of their business connections to pharmaceutical companies (which seem to have no moral qualms about charging 56 times the market worth of a life-saving medicine).

The DSM Drama (“Part V”)

Dr. Stefan P. Kruszewski, in an opinion piece written for ABC News entitled “Doctors’ Conflicting Interests Can Cost Money and Lives, and Hinder Medical Discoveries,” warns against the danger of medical practitioners recommending specific drugs as part of treatment while being paid to speak, advocate, and do research for the companies that manufacture them.

After writing a letter expressing concerns about such practices to the Journal of American Medical Association, the associate editor responded (via e-mail) by shrugging such concerns off as trivial.

During the review process, an associate editor at the journal asked the question (and inadvertently copied me on an email that had been sent to another associate editor), “What’s the big deal? What’s all this [expletive deleted] about conflicts of interest?” (see link)

Kruszewski, however, thinks such practices are actually very dangerous.  He writes:

But I do worry, because drug promotion and clinical decision-making that are brokered on the backs of dollar bills have a greater chance of causing serious adverse outcomes, including illnesses and death. If a physician embellishes the effectiveness of a drug or minimizes its risk, that directly hurts you and me.  Physicians who are heavily supported by pharmaceutical companies and medical device makers are not forming independent, unbiased decisions. Instead, their brains have been lined with gifts, perks and money, which influences their rose-colored opinions. (see link)

The conflict of interest does not stop at Dr. Kruszewski’s worries and the problem he points to can unfortunately be traced to the DSM (The Diagnostic and Statistical Manual), which is an authoritative taxonomy of mental disorders.  Worries of financial conflicts plagued the fourth installment of the DSM (the DSM IV) and with the DSM V on the horizon, similar criticisms are voiced.

The manual, published by the American Psychiatric Association, details the diagnostic criteria for each and every psychiatric disorder, many of which have pharmacological treatments. After the 1994 release of DSM-4, the APA instituted a policy requiring expert advisors to disclose drug industry ties. But the move toward transparency did little to cut down on conflicts, with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies — up from 57 percent for DSM-4. (see link)

The greatest risk of conflict of interest remains with the taxonomizing and eventual diagnosing of disorders that are intimately linked with the manufacturing of drugs intended to treat these disorders.  Katie Moisse writes:

Some of most conflicted panels are those for which drugs represent the first line of treatment, with two-thirds of the mood disorders panel, 83 percent of the psychotic disorders panel and 100 percent of the sleep disorders panel disclosing “ties to the pharmaceutical companies that manufacture the medications used to treat these disorders or to companies that service the pharmaceutical industry,” according to the study. (see link)

This is not to suggest, of course, that medical professionals have malicious intent or that they are only interested in the health of their own bank accounts.  However, there remains a serious worry about the taxonomy itself as well as about future diagnoses and treatment.  To add to the turbulent atmosphere surrounding the DSM V, the introduction of certain new diagnoses has also been criticized.

The DSM-5 has also drawn criticism for introducing new diagnoses that some experts argue lack scientific evidence. Dr. Allen Frances, who chaired the revisions committee for DSM-4, said the new additions would “radically and recklessly” expand the boundaries of psychiatry.  “They’re at the boundary of normality,” said Frances, who is professor emeritus of psychiatry at Duke University. “And these days, most diagnostic decisions are not made by psychiatrists trained to distinguish between the two. Most are made by primary care doctors who see a patient for about seven minutes and write a prescription.” (see link)

I think we have a serious problem on our hands if drug companies get to determine the taxonomy of mental disorders and medical doctors diagnose and prescribe drugs in accordance with the financial interests of these drug manufacturers.  Even if things are not as bad as they sound, they seem to be getting worse (“with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies — up from 57 percent for DSM-4”).  Should we start going to the accountants of pharmaceutical companies for advice?  Now that would be absurd, but if pharmaceutical companies have as much sway over what is defined as a mental disorder and what treatment is pursued as Moisse suggests, then perhaps we might as well just bypass the middleman (the local mental health professional) and go directly to the source!  Why are individuals who are directly funded by drug manufacturers allowed to make executive decisions on the DSM V?  James Scully, APA director, sees no other way.

APA medical director and CEO Dr. James Scully insisted the DSM-5 development process “is the most open and transparent of any previous edition of the DSM.”  “We wanted to include a wide variety of scientists and researchers with a range of expertise and viewpoints in the DSM-5 process. Excluding everyone with direct or indirect funding from the industry would unreasonably limit the participation of leading mental health experts in the DSM-5 development process,” he said in a statement. (see link)

Lisa Cosgrove, associate professor of clinical psychology at the University of Massachusetts-Boston is of a different opinion:

Cosgrove said she believes there are plenty mental health professionals with no financial ties to drug companies. If necessary, experts with conflicts could still participate in the process as non-voting advisors, she said.  “My best hope would be for the APA to respond in a substantive way to the concerns we’ve raised,” she said. “They have an opportunity here to make a correction that would give the appearance, if not the reality of developing a diagnostic instrument that’s objective and has integrity.” (see link)

I hardly think that the mental health professionals with no financial ties to drug companies live at or just above the poverty line, so why, unless a researcher is explicitly doing research for a certain pharmaceutical company, does the profession open itself to such criticisms by allowing the kinds of practices Kruszewski and Cosgrove object to?

Eugenic Reasoning in Legal Phrasing?

Argentina’s strict anti-abortion laws got a minor make-over recently, as the Supreme Court of Argentina has ruled that rape victims will not be persecuted for having abortions.  The supreme court unanimously backed the decision of allowing a 15-year-old girl, who endured years of sexual abuse by her stepfather, to terminate her pregnancy.  “However, the judges said that their decision was not part of a discussion about the legalisation of abortion in Argentina, but just a clarification of existing laws” (see article).

The controversy was centred around Section 2, Article 86 of the Argentine penal code, which states that “abortion is not a punishable act ‘if the pregnancy stems from a rape or an attack on the modesty of a woman of feeble mind’” (see article).  The horrible suffering of the poor 15-year old aside, it is interesting to note that the Argentinian law’s phrasing includes “feeble mindedness” in its allowances for legal abortions.  Curiously (and I think quite tellingly), the point of debate in interpreting the law had to do with whether or not all rape victims or just those who are deemed “feeble minded” should be allowed to terminate their pregnancies.

Now, putting the phrase “feeble minded” in the sentence cannot have anything to do with informed consent (and the fact that some individuals might be deemed incapable of giving it) since the law pertains to rape cases, which, by their very definition, are instances where neither informed nor any other kind of consent can or ever is given.  What might be the reason the phrase “feeble minded” made its way into the sentence and why might it be unclear to those interpreting the law whether or not it covered all or just “feeble minded” rape victims?  If I were to venture a guess, I would say that eugenic reasoning is likely responsible for the legal phrasing the judges had such difficulty interpreting.

Call for submissions to a special issue of Disability Studies Quarterly (DSQ)

Improving Feminist Philosophy and Theory by Taking Account of Disability
Guest editor: Shelley Tremain, PhD

Submissions should be no more than 8,000 words in length, inclusive of notes and bibliography, and should be prepared for anonymous peer review, with no identifying elements in the text or reference material, and accompanied by an abstract of 200 words.  Submissions and all inquiries about the issue should be sent to Shelley Tremain at: s.tremain@yahoo.ca with the subject line “DSQ  FEMDIS”.

NOTIFICATION OF ACCEPTANCES: on or before November 30, 2012.
DATE OF PUBLICATION: Projected for late 2013.

A growing body of literature demonstrates that disabled people confront poverty, discrimination in employment and housing, sexual violence, limited educational opportunities, incarceration, and social isolation to a far greater extent than their non-disabled counterparts and furthermore that disabled women experience the impact of these disabling social and political phenomena even more severely than do disabled men.  Although feminism is purported to be a social, political, and cultural movement that represents all women, disabled feminists have long argued that the concerns, political struggles, and socio-cultural issues that directly affect disabled women (and disabled people more generally) remain marginalized, and often ignored, within mainstream feminist movements.

Feminist theorists and researchers in the university produce and reproduce this marginalization and exclusion through a variety of mechanisms, one of which is Continue reading

A Prequel to Gattaca?

The 1997 film Gattaca, written and directed by Andrew Niccol, portrays a futuristic society where babies are genetically engineered according to parental references.  The film features a society that consists almost exclusively of such artificially built individuals, with those who are born in the archaic, natural manner occupying the fringes of this society.  In order to protect the rights of what are referred to as the “valids” and thereby keep out the inferior “invalids,” each individual’s genetic material is constantly sampled and monitored.  Every person’s DNA is stored in a database, making multiple scans and random genetic sweeps in the workplace very efficient.  The story follows an “invalid” who has a dream of becoming an astronaut, a job open only to the genetically enhanced elite.

But my intention here is not to provide a synopsis of the film, which is very good and is certainly well worth the time it takes to watch.  Rather, I wanted to Continue reading

Parent Bullies: Homophobic Parents Protest Making Schools Safe for ‘Gay’ Kids

The Anoka-Hennepin Independent School District 11, located just north of Minneapolis, changed its policy of neutrality regarding questions of sexual orientation in favour of active affirmation of the dignity of all students regardless of their race, disability, or sexual orientation.  The New York Times reports:

 In response to conflicting pressures, Anoka-Hennepin officials had devised an unusual policy, directing teachers to remain neutral on any questions involving sexual orientation. But some teachers said that this hampered their ability to support gay students and that the overall climate was still hostile.  Last month, the district rescinded the neutrality policy in favor of a requirement to “affirm the dignity and self-worth of students” regardless of race, sexual orientation, disabilities or other factors. In addition, according to the new agreement, the district will strengthen measures to prevent, detect and punish bullying based on gender or sexual orientation, hire a full-time “harassment-prevention” official, bolster mental health counseling and identify harassment “hot spots” on the campuses of middle and high schools.

However, the Anoka-Hennepin Parents Action League (see their website here) complained that  “[m]aking schools safe for ‘gay’ kids means indoctrinating impressionable, young minds with homosexual propaganda” (see The New York Times).  The Parents Action League website states that

Teaching about sexual orientation is not a part of the District adopted curriculum; rather, such matters are best addressed within individual family homes, churches, or community organizations.

Two things are quite striking here and both are examples of narrow-minded groups making students worse off by making themselves vocal.  First, and most obviously, the reported statement that “[m]aking schools safe for ‘gay’ kids means indoctrinating impressionable, young minds with homosexual propaganda” is outrageous in itself especially since it implies that what I take to mean the majority (that is, the heterosexual kids) are better served if ‘gay’ kids are not protected from bullying.  I am not sure whether the parents who agreed on such a formulation in their e-mail were appealing to some seriously misguided utilitarian calculation or whether they were just expressing their support for bullying based on sexual orientation?  Either way, the statement represents an unusually ugly thought!

Second, the statement on the Parents Action League website is a further testament to the dangers of giving narrow minded and aggressively fearful groups power over the education of future generations.  Statements like: “[t]eaching about sexual orientation is not a part of the District adopted curriculum; rather, such matters are best addressed within individual family homes, churches, or community organizations” is reminiscent of burning the “Satanic” Harry Potter Books (see the 2001 BBC News Story).  All such practices will do (practices of withdrawing educational content from the curriculum and relegating it to the home), and I imagine that this is the hope of the Parents Action League, is to perpetuate discrimination based on sexual orientation precisely because homophobic parents seem to want to shield their children from any statements that confer dignity and self-worth upon homosexual students.

Parents should certainly play a greater supportive role in their children’s education.  Having had teaching experience at the secondary education level, I have seen my share of too much resentment toward teachers for the low achievement of their child and too little active participation in the child’s education.  Of course, this is not descriptive of all, or even most, parents.  However, participation in a child’s education should not come in the form of lobbying to truncate the educational experience of students.  If schools are to teach only the core subjects (math, social, science, and english), and remain silent (since being neutral in this context just means staying silent) on all other issues, then the quality of citizens leaving the school system will be poor indeed.

Fortunately, the Anoka-Hennepin Independent School District 11 went ahead with its new policy.  Perhaps once they eradicate bullying based on sexual orientation in their hallways, they will start to fight the source of bullying, namely the opinions and beliefs of homophobic parents!

Erotica For Everybody?

It would seem that erotic images really do sell and that they infiltrate our society from all directions.  Aside from the obvious venues for erotic images and films, pictures of handsome individuals in provocative poses are plastered all over our cities and flashed, it would seem, at every conceivable opportunity both on the internet and on television.  However, images are for those who can see, which means that a substantial population is “spared” this constant barrage of depictions.  Questions of morality aside, pornography sells!  In fact, Lisa J. Murphy’s Tactile Mind is one example of how erotic imagery continues to fill newer and more numerous social niches.  Murphy’s Tactile Mind is “a handmade thermoform book consisting of 17, 3-D tactile photographs on white thermoform plastic pages with the visual image and descriptive Braille accompaniment” (see website).  The book is sold for an extravagant $225, but single pages can also be purchased for $25 a page.  Another example of such “niche-filling” is “Porn for the Blind,” which is

a website which purports to offer sexual stimuli for blind people over the internet.  The website is composed of a white background with a list of links to mp3 sound clips of pornographic content contributed by volunteers.  A ‘translator’ will watch preview clips of videos and give a play-by-play of the events.  Contributors are not allowed to use sexual words when describing existing videos and must give purely clinical descriptions of the events. (see citation)

Although, on the one hand, it might be argued that erotic images are inappropriate even in socially sanctioned contexts, it does seem a bit paternalistic to do those who can only read braille a moral favour by denying them access to erotic material.  From my understanding, the two examples I provided above are quite censored as it is.  The images in Murphy’s book lack faces and are featured only in single poses while the mp3 descriptive recordings do not use sexual words in their descriptions.

There is certainly a debate over the appropriateness of pornography (see Natalie Purcell’s “Feminism and Pornography: Building Sensitive Research and Analytic Approaches”), but at least now it’s everybody’s discussion!

Disability, Sport, and Ableism Conference

For anyone interested, there will be a series of talks on the topic of disability and sport in various locations on the University of Alberta campus on Tuesday (February 14) and Wednesday (February 15) as part of the Disability, Sport, and Ableism Conference.  Here is a quick run-down of talk titles, locations, and times:

1. From Pistorius to Para-Olympism: Contentious Paralympic Issues

(Panelists listed below)

Feb 14, 12:30 to 2 pm, PE E-120


2. What Can One Do With Ableism?

Lecture: Dr. Gregor Wolbring

Feb 15, 3 to 4:30 pm, ETLC ELO18 Followed by social at Leva Cafe


3. Albeism, Obsolescence & Body Technology

Seminar with Dr. Gregor Wolbring

Feb 15, 11am, Tory 14-28 (rsvp peers@ualberta.ca)


Featured Panelists & Speakers:

David Greig MHK, ChPC is a National Talent Development Coach for Para-Athletics, Athletics Canada.

Dr. P. David Howe is a former Paralympian, a coach, a journalist and a sport anthropologist who studies social theories of embodiment.

Jean Laroche, ChPC is the Lead Coach for Para- Athletics at the Sherbrooke (QC) High Performance Centre.

Danielle Peers, M.A. (U of A) is a former Paralympian, a coach, a Ph.D student and a Trudeau Scholar who studies disability, sport & human rights.

Dr. Gregor Wolbring (U of C) is an Assistant Professor in Community Rehabilitation and Disability Studies, who studies ethics and governance of science and technology with a focus on issues faced by disabled people.

If It Ain’t Broke, Don’t fix It, But What if It’s Enhanced?

Gary Karp, who sustained a spinal injury in 1973, which prevents him from using his legs states that although his spine is technically broken, he is not.  Although he confesses that he would want to walk again, he clarifies that he would not want to do so at any cost.  He writes (click here for the entire blog post):

Well, it’s not about whether I want to walk. Of course I want to walk. That is, if I could walk the way I did before my injury. Easily, without fatigue, secure in my balance, painlessly. That’s a pretty tall order (especially given that I’m six foot two!).

The problem with paralysis, Gary argues, is that it is viewed as a thing to be fixed and thus people with injuries like Gary’s are viewed as damaged or broken.  He writes:

If the prevailing view of paralysis—or having a disability of any kind—is that the most important thing is to try and fix people (because, of course, what else could broken people want?), then how will I be viewed as the whole person I am—in the context of my paralysis? If I’m damaged goods, then I’m a person whose life can only be improved—much less be a meaningful and satisfying life—if someone repairs my brokenness.

His view on technological advancements like the exoskeleton is this:

What, then, of the exoskeleton? I don’t see it as something that will fix me, that will fill in something horribly missing in my life. After 38 years I’m so thoroughly adapted that not being able to walk is normal. For me.

The exoskeleton, however, is just a hint of what is possible.  What lies beyond is far from mere fixing; the possibilities point to enhancement.  If Gary and others like him decided to “upgrade” their legs with some future technology inspired by the exoskeleton, would those with “regular” legs be in need of fixing?  In a world of enhanced humans, would all people be born damaged or broken?

Oscar Pistorius is a contemporary example of what may one day be possible.  Oscar is a double amputee and a world class sprinter.  His legs, which were made by the same company the CEO of Ekso Bionics worked for at the time, have been the cause of the IAAF’s ruling making him ineligible for competitions conducted under its guidelines.  This decision was eventually reversed, but the reasons for reversal were not that the use of artificial legs is not an issue, but rather that they do not give him any advantage over other competitors.

Of course, there must be some restrictions set on competitions.  For instance, using a bicycle or a motorized vehicle to win the 100m dash certainly does not seem to be in the spirit of that particular sporting event and so the use of mechanized legs can surely lead to questions.  However, the issue of advantage in sport due to technological advancements does not begin with Oscar Pistorius.  Shouldn’t better running shoes fall into this same category?  What about better diets and certain dietary supplements?  What about the advancement in training efficiency?  Are these not technological improvements?  I doubt that Coroebus of Elis, who won the stadion race in 776 B.C.E., would be a match for Usain Bolt, who won several races at the 2008 Olympic Games.  Does fairness dictate that athletes should have equal access to advantage conferring technologies?  So, in the case of the IAAF’s objections to Pistorius,  was the underlying issue of fairness related to the fact that his legs were not equally accessible to other athletes?  What about Usain Bolt’s physiology?  Is it on par with mine?  If I trained as he does, ate as he does, slept the same amount of time he does, etc., would I also be able to run 100m in 9.72 seconds?  I doubt it!  Does Bolt have an unfair advantage over me?  Insofar as he is better predisposed than I for such great sprinting performance, I guess he does have an unfair advantage.  Do I need fixing?  Am I broken?  Well, no.  I’m not a sprinter, so I don’t need fixing, right??  What about Coroebus of Elis?  Was he broken?  Well, no.  He won the first ever recorded Olympic race!

I am certainly not making claims about the IAAF’s decision, nor about the reversal of the IAAF’s decision by the Court of Arbitration for Sport.  I also am not questioning the logic behind the rules and boundaries in sporting events.  What I question, however, is whether any competitors can truly be said to be advantage-less?  And I think the answer is no!  If that is the case, however, then it would seem that the point of contention about Pistorius’ alleged “edge” over his co-competitors might actually stem from a deeper apprehension about what our society considers to be abnormal.  Could it be that both Gary (who cannot walk) and Oscar (who can outrun much of his “normal” competition) are somehow viewed in terms of being in need of “fixing” because they are abnormal?  If this is the case, then it’s not merely an ableist fear because Oscar Pistorius, to my mind, is more than able to win races against “normal” sprinters.  Perhaps people are suspicious of difference?  I just hope they never figure out that taller people take bigger steps when they sprint.

Guessing Genders Ain’t Gonna Fly

Air travel for transgender Canadians is made difficult by worrisome regulations (click here for details).  Sec 5.2(1)(c) of the ID screening regulations of Aeronautics Act states:

“An air carrier shall not transport a passenger if the passenger does not appear to be of the gender indicated on the identification he or she presents.”

The Canadian” states that this is problematic to say the least (and it strikes me as outrageous to say a bit more).

What if you’re from a province that will not allow you to change gender markers on your ID without surgery?   The Canadian government also will not allow you to change the gender marker on your passport without proof of surgical reassignment or a letter guaranteeing you will undergo SRS within a year.

This issue becomes even more absurd considering not only that surgery is invasive, but also that it is a big decision.  A columnist for the Montreal Gazette explains:

The “passing” issue is a touchy subject with some trans people, particularly Male-to-Females (MtFs). When fully transitioning, it can be a dealbreaker, which is one of the reasons why we have to undergo a minimum one-year real-life test before having sexual reassignment surgery. For those who don’t know, the real-life test for MtFs involves living as a woman 24/7. During that time, we find out how people view us.

Undergoing a test should be just that, trying it out.  Providing documentation guaranteeing SRS within a year seems a little odd!  Does this mean that transgender individuals should get all their travelling done and out of the way before they decide to transition?  But the absurdities seem to pile on: Continue reading

Is Mount Everest the Proper Political Podium for Individuals with Disabilities?

Sudarshan Gautam, a 25-year old Nepalese man living in Calgary, lost his arms in an accident 15 years ago.  The experience of being both pitied and laughed at by his family and school friends, as well as the general negative attitude of others toward his disability prompted him to prove that losing his arms did not make him disabled.  To this end, he learned to drive a non-modified motorbike and a car with manual transmission.  He also declared that he would summit Mount Everest in 2012.

Mount Everest, being the highest point on earth, gets its share of “firsts.”  Following the famous first successful ascent by Edmund Hillary and Tenzig Norgay, there had been a constant number of both legitimate and eyebrow raising “firsts.”  On the one end of the spectrum, there was the first ascent without oxygen (1978) by Reinhold Messner as well as the first winter ascent by Leszek Cichy and Krzysztof Wielicki in 1980.  On the other end of the spectrum, there was a dangerous helicopter landing in 2005, an insane ski descent, a sleep-over on the summit, etc.  Although the mountain has been commercialised for many years now (with “tourist” climbing companies charging as much as $70,000 per person to lead clients to the roof of the world), the mountain continues to be both a dangerous place and a place of infinite “firsts” with individuals always willing to risk their lives (and the lives of other people on the mountain since rescue efforts at such extreme altitudes are very dangerous endeavours) to be the youngest, the oldest, the fastest, etc. to reach the summit.

Climbing Everest is definitely a personal accomplishment and it has certainly been quite a political endeavour ever since people had set their minds on climbing it.  I am not surprised that Sudarshan Gautam is hoping to promote his noble cause (of advertising abilities of individuals with disabilities) by attempting to climb the highest mountain in the world.  There have been other individuals with disabilities who have successfully navigated the treacherous ridges of Everest.  Erik Weihenmayer was the first blind person to summit Everest and Mark Inglis was the first to do so without legs.

The questions, however, that seem to bother me are Continue reading

Talking to the Absent?

Dr. Adrian M. Owen, a British neuroscientist currently working at the University of Western Ontario, recently presented his research at the University of Alberta.  The research team at UWO, led by Damian Cruse and Adrian M. Owen, claims to have found a way to test for consciousness in patients utterly unresponsive.  Using an fMRI scan to take images of patients’ brains while asking them to imagine certain things (either playing tennis or walking through a house) as a means of responding “yes” or “no” to questions, revealed, according to Dr. Owen, that at least 20% of patients labelled as being in vegetative states are in fact conscious (at least some of the time), but merely unable to communicate with the outside world that they in fact are conscious.  Because the mental states associated with playing tennis are consistently and ubiquitously correlated with a distinctly different part of the brain than mental states associated with spatial location, the UWO team deemed the “tennis-playing” and “house-walking” thoughts to be perfectly suited to code for such distinct responses as affirming or negating something.

The problem with assessing whether or not someone is conscious is that short of asking, all we have at our disposal is diagnoses made based on behavioural outputs (one such output being an affirmative verbal response to the question “are you conscious?”).  However, assessing the level of consciousness of a patient incapable of outward communication of any sort becomes quite difficult.  According to Dr. Owen, 20% of patients previously labelled as being in vegetative states showed signs of consciousness precisely because, thanks to the fMIR scans and the questioning techniques used by the UWO team, they were able to acknowledge their awareness by correctly responding to questions about their personal lives (i.e. questions regarding the names of a parent, the location of their last vacation prior to the accident, etc.).

Such a breakthrough, according to Dr. Owen, could potentially help clinicians make more accurate diagnoses (he cited a current 45% occurrence of misdiagnosis of patients with severe brain damage) and, perhaps even more importantly, it could help shape policies regarding the passive euthanasia of patients like Terri Schiavo.  Here is a New York Times article directly related to Dr. Owen’s research.

There are several questions, in light of Dr. Owen’s research, that come to mind: Is there a problem with passive euthanasia if a patient like Terri could have been asked?  Was there a problem with it (in the case of Terri) regardless of such a possibility?  What if once assessed as conscious and subsequently asked, a patient expressed a wish to be euthanised, but not passively euthanised because of the long and cruel nature of death by starvation and dehydration?  If 20% of patients in Dr. Owen’s study showed signs of consciousness, could there be more?  What should we make of the moral status of individuals who’s mental lives weave in and out of consciousness or consist of some very faint traces of consciousness?  What “amount” of identifiable signs of consciousness is enough?  Is it appropriate at all that consciousness is, as it seems to have become, the moral threshold between life and death?  There are many interesting questions that emerge from this issue more generally as well as the research at UWO more specifically.  For now, as I continue to digest Dr. Owen’s talk, I just pose some of these questions in their raw and unpolished forms, hopefully to get some insightful comments, concerns, other questions, etc., which will certainly aid in my thinking through such issues.

Gender Stereotyping and Parenthood Dilemmas

In an effort to avoid gender stereotyping, Beck Laxton and partner Kieran Cooper concealed the gender of their son from the world.  The gender neutrally named Sasha has now turned five and is starting school.  Prior to the commencement of formative school years, Sasha has been given the choice to dress in clothes that appealed to him, be they hand-me-downs from an older sister or an older brother.  When Sasha turned five, his parents were forced to reveal his gender, which means that Sasha will have to get used to being perceived as a boy by his peers.  Although the school requires different uniforms for boys and girls, Sasha’s mom is intervening by letting Sasha wear a girl’s blouse with his pants.

Last year, a different couple made a similar decision not to reveal their child’s gender.  Some psychiatric experts voiced their concerns:

“To have a sense of self and personal identity is a critical part of normal healthy development,” Dr. Eugene Beresin, director of training in child and adolescent psychiatry at Massachusetts General Hospital, told ABC News. “This blocks that and sets the child up for bullying, scapegoating and marginalization.”

The article continues:

But as parents well know, bullying is hard for any child to avoid. It’s more important to raise someone who’s confident enough in himself to overcome peer pressure. It’s also important to have his parents have his back.

The question of personal identity is interesting as gender is certainly a big part of it.  However, that’s precisely the problem couples like Beck Laxton and Kieran Cooper are attempting to avoid.  The question of bullying, scapegoating and marginalization is a bit trickier since such actions are certainly a product of dogmatically ingrained gender stereotyping, but they will not cease to exist just because Sasha’s parents have grown past them.  Although bullying may well be hard for any child to avoid, some children do get bullied more than others.  And although Laxton and Cooper are trying to inculcate a sense of self and others in Sasha, which they hope will be lacking gender stereotyping, are they also not sacrificing their child’s emotional and physical safety by setting him up for potential bullying?  It is quite important to raise someone who’s confident enough in him or herself to overcome peer pressure, but it could also be the case that exposing a child to more risk of bullying may have an adverse effect on his or her confidence.

That’s not to say that Sasha will be bullied, but it will depend on his environment.  If Laxton and Cooper chose an appropriate school, perhaps their goal of raising their son to be confident in himself and have a valuable dual perspective on gender will not be compromised by the very gender stereotypes they are attempting to undermine.  “Egalia,” a preschool in Stockholm, Sweden comes to mind (as an example of the kind of environment in which Sasha could flourish).  Staff do not use words like “him” or “her,” but rather a made-up neutral term and students are encouraged to do the same.  Moreover, traditional “boy” and “girl” toys are spatially integrated so as to obliterate any value systems associated with stereotypical gender preferences.  For those interested, here is the article.

Bullying has not ceased in spite of a laudable movement to curb it.  Although Laxton and Cooper’s hearts may be in the right place, they have influence only over Sasha’s worldview and not that of other children (who get theirs from their own parents or guardians).  Are they putting Sasha at risk, as Dr. Eugene Beresin claims?  And if the answer is yes, are they entitled to make such choices for Sasha if they lead to increased risk of bullying, which could potentially be developmentally as well as physically harmful?

Student Summer Work Opportunities

Student Summer Work Opportunities:

Flexible Hours (30-40 hours per week)
Wages range between $9.00-11.00 per hour
Possibility of holding a second job due to hour flexibility
Students can work from anywhere in Canada as work will be done by telecommuting

Job Description(s):
Editing and internet support
Potential composition of published articles and/or books (with possibility of co-authorship)
Typing and editing large manuscripts
Help for graphic design for covers
Also looking to fill one internet position

Applicants must be full time students.

Please contact Dr. Austin Mardon at aamardon@yahoo.ca