Intersex Genital Surgery as Torture, from a Perspective of the Imperative of Normality
“When we fall outside the norm, we fall outside the set of categories and concepts by which we can be understood and be made intelligible to others…[T]o the extent that we come to be identified with the anomaly, we simply are identified as someone who lacks value and even intelligibility.”[1]
“Normality, then, is the backdrop against which our individuality…becomes foregrounded.”[2]
“This is discrimination on the basis of social stigma. The unavoidable pain of surgery and the high risk of severe lifelong physical and mental suffering – from loss of sexual sensation and function, pain caused by scarring, infertility, castration, violation of bodily integrity, and irreversible surgical assignment to the wrong sex – would never be acceptable by doctors or parents if the child did not have an intersex body.”[3]
To what extent can a discussion of the imperative of normality inform our classification of particular acts as torture? On Feb. 1st, 2013, Juan E. Méndez filed a report entitled “Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment” to the United Nations which focused on certain forms of abuses in health-care settings.[4] This report, which included a brief discussion of medical practices of genital surgery on intersex infants, drew from a report to the UN Special Rapporteur by Anne Tamar-Mattis, which extensively documented human rights abuses and harm against intersex individuals, which Tamar-Mattis claimed to be severe enough to be considered torture. What conclusions or implications from an analysis of the imperative of normality can be brought to bear on this characterization of genital surgery as torture?
At first glance it appears as if consideration of normality allows us to draw no conclusions whatsoever; indeed, it is a fact of a reality that genital surgery for intersex infants is the norm in most parts of the Western world, and certainly in the United States. And if torture is the classification in question, then we have normative definitions of torture, like the ones provided in both reports (which draw from various legal precedents, both national and international, regarding the legal definition of torture) which have been applied to intersex individuals (putting aside for the moment of their correct or incorrect application). Thus, it would appear that an analysis of normativity does little to inform this debate, as the question is simply a matter of whether or not the one norm properly confronts the other.
However, here we must distinguish between normative and prescriptive. Usually we think of “normative” with regard to claims that purport to be prescriptive, that demand obedience. However, in the context of social norms, normativity, and the imperatives of the normal, the normative is that which actually comes to bear on the freedom of action of individuals who operate within it. Thus, the UN definitions of torture (and the corresponding demands of cessation) would be merely prescriptive if in fact they did apply in this context, and have failed to be normative insofar as they continue to be ignored. Indeed, many other prescriptive norms which usually apply in medical or surgical contexts (the demand for consent, the demand for full disclosure of information, the demand that surgical operations follow a coherent and rational cost-benefit analysis, that follow up treatment be available, that we avoid actions on children that have similar psychological effects to child abuse, the principle of non-harming, that permanently life changing operations be approached cautiously and after much deliberation)[5] are blatantly ignored in the event of an intersex birth. The question is, then, why are such prescriptives ignored, and what does this tell us?
In fact, analysis of the imperative of normality can aid us in identifying populations who are the subject of torturous practices insofar as those populations fall outside of the norm. The reason for this is found in the above quotations: normality grounds the possibility for intelligibility. Those who fall outside the normal fall outside of our normal ways of perceiving the human person. Insofar as they lie outside the text of normality, they are seen as an exception, not only to the norms that they violate, but indeed the rules of behavior which normally govern our relationship and behavior towards them. The permissibility of non-normative actions is greatly increased when applied to non-normative subjects. If individuality is foregrounded in normality, as Kittay claims above, then individuals who fall outside of norms are not seen as individuals who are subject to normative values (such as human rights) at all, but are seen instead as a social emergency that needs to be eradicated. And since intersex infants are seen as a medical emergency, the medical apparatus that (re)produces their abnormality brings its full strength to correct it. A whole slew of norms, not just gender or sex, but heteronormative, patriarchal, and embodied norms (being able to urinate standing up for males, having an adequate sized penis that is capable of penetrative heterosexual intercourse for males, having a vagina that is receptive to penetration for females, discourses of masculinity and femininity, and having genitals that match gender assignment are frequently cited justifications for surgery by medical professionals)[6] are brought up in discussions of how to normalize. The willingness to bring intersex individuals within normative classifications no matter what the cost (mental, physical, spiritual, social, relational) should raise great suspicion about the legitimacy of normalization procedures. It could be argued that all populations which lie outside of normative frameworks which, nonetheless, have power over and come to bear on them ought to be considered at-risk populations for human rights abuses. Since falling outside of norms, and therefore outside of conceivability, elicits a visceral, emotional response and is considered an exception to normal regulations of behavior, the possibility and permissibility, and indeed the impunity of violence and abuse is magnified. This analysis of the imperative of the norm, and what falls outside it, informs our discussion of genital surgery on intersex infants and torture insofar as it forces us to consider intersex infants an at-risk group, and to take these claims of abuse extremely seriously.
[1] Kittay, Eva Feder, “Thoughts on the Desire for Normality,” Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality, p. 106
[2] Ibid., 108
[3] Tamar-Mattis, Anne, “Report to the UN Special Rapporteur on Torture: Medical Treatment of People with Intersex Conditions as Torture and Cruel, Inhuman, or Degrading Treatment or Punishment,” Dec. 10, 2012, p. 9
[4] Méndez, Juan E., United Nations General Assembly, Human Rights Council, Twenty-second session, Agenda item 3: “Promotion and protection of all human rights, civil, political, economic, social, and cultural rights, including the right to development.” 1 February 2013
[5] The ignoring of all of these is well-documented in Tamar-Mattis’ report
[6] Tamar-Mattis’ report documents these concerns, but see also Kessler, Lessons from the Intersexed, Ch. 2-3
Claudia Is Intersex, Let's Talk About It
Intersex people are born with a mix of sex characteristics – some traditionally considered male, and some considered female – in the same body. For example, I have a vagina and later developed breasts and hips, but I also have XY chromosomes, and had testes at birth. I’ve got some “male” traits and some “female” traits in the same body, so it’s not so easy to clearly assign me “male” or “female.” My own body is just one example; intersex isn’t a single category, and there are many different variations of intersex and, within each variation, a lot of diversity. Not all male or female bodies look and function the same, you know? Knowing that I’m intersex alone doesn’t really tell you much about me or my body.
Full article here
Complications of Mycobacterium leprae
The above condition is probably what you think of when you hear ‘leprosy’; disfigurement and limbs falling off. These are not actually symptoms caused directly by M. leprae, but are complications of long exposure to it. Prior to the effective forms of modern medicine some of us enjoy today, once an individual was infected with M. leprae, life long exposure and disfigurement was a guarantee. Today, leprosy is very treatable.
The reason digits and extremities decay in extreme cases is because of the damage M. leprae reaps on the peripheral nerves (which your hands have a high density of). Without feeling in your extremities, you become prone to damaging them without realizing, cutting off their blood flow, wrist/foot-drop, absorption of digits, clawing of toes and hands, and possibly contracture.
Leprosy in the Philippines. 19th century.
Leprosy in the Philippines. 19th century.
Leprosy in the Philippines. 19th century.
Leprosy in the Philippines. 19th century.
Leprosy in the Philippines. 19th century.
Operating table, Europe, 1881-1910
Operating tables may have had multiple uses. It is possible this example doubled as an obstetrical table because it has nickel-plated stirrups. These may have held the mother’s feet during childbirth. The padded table folds upward to create a backrest and the bottom shelf slides out, possibly to hold instruments. The table was used at Salpêtrière Hospital in Paris, a teaching hospital built by Louis XIV the ‘Sun King’ in 1656 on the site of a former gunpowder factory. Before this, the site housed prostitutes, the poor, and people with disabilities and mental illnesses. By the late 1700s, the Salpêtrière had become the world’s largest hospital.
I often have to cut into the brain
New Voices highlights the best emerging talents on granta.com. The latest in the series is Henry Marsh, a brain surgeon turned memoirist, whose piece here describes an operation on the deeply buried pineal gland
I often have to cut into the brain and it is something I hate doing. With a pair of short-wave diathermy forceps I coagulate a few millimetres of the brain’s surface, turning the living, glittering pia arachnoid – the transparent membrane that covers the brain – along with its minute and elegant blood vessels, into an ugly scab. With a pair of microscopic scissors I then cut the blood vessels and dig downwards with a fine sucker. I look down the operating microscope, feeling my way through the soft white substance of the brain, trying to find the tumour. The idea that I am cutting and pushing through thought itself, that memories, dreams and reflections should have the consistency of soft white jelly, is simply too strange to understand and all I can see in front of me is matter. Nevertheless, I know that if I stray into the wrong area, into what neurosurgeons call eloquent brain, I will be faced with a damaged and disabled patient afterwards. The brain does not come with helpful labels saying ‘Cut here’ or ‘Don’t cut there’. Eloquent brain looks no different from any other area of the brain, so when I go round to the Recovery Ward after the operation to see what I have achieved, I am always anxious.
There are various ways in which the risk of doing damage can be reduced. There is a form of GPS for brain surgery called Computer Navigation where, instead of satellites orbiting the Earth, there are infrared cameras around the patient’s head which show the surgeon on a computer screen where his instruments are on the patient’s brain scan. You can operate with the patient awake The idea that … memories, dreams and reflections should have the consistency of soft white jelly, is simply too strange to understand under local anaesthetic: the eloquent areas of the brain can then be identified by stimulating the brain with an electrode and by giving the patient simple tasks to perform so that one can see if one is causing any damage as the operation proceeds. And then there is skill and experience and knowing when to stop. Quite often one must decide that it is better not to start in the first place and declare the tumour inoperable. Despite these methods, however, much still depends on luck, both good and bad. As I become more and more experienced, it seems that luck becomes ever more important.
I had a patient who had a tumour of the pineal gland. The dualist philosopher Descartes, who argued that mind and brain are entirely separate entities, placed the human soul in the pineal gland. It was here, he said, that the material brain in some magical and mysterious way communicated with the mind and with the immaterial soul. I wonder what he would have said if he could have seen my patients looking at their own brains on a video monitor, as some of them do when I operate under local anaesthetic.
Pineal tumours are very rare. They can be benign and they can be malignant. The benign ones do not necessarily need treatment. The malignant ones are treated with radiotherapy and chemotherapy but can prove fatal nevertheless. In the past they were considered to be inoperable but with modern microscopic neurosurgery this is no longer the case: it is usually now considered necessary to operate at least to obtain a biopsy – to remove a small part of the tumour for a precise diagnosis of the type so that you can then decide how best to treat it. The biopsy result will tell you whether to remove all of the tumour or whether to leave most of it in place, and whether the patient needs radiotherapy and chemotherapy. Since the pineal is buried deep in the middle of the brain the operation is, as surgeons say, a technical challenge; neurosurgeons look with awe and excitement at brain scans showing pineal tumours, like mountaineers looking up at a great peak that they hope to climb. To make matters worse, this particular patient – a very fit and athletic man in his thirties who had developed severe headaches as the tumour obstructed the normal circulation of cerebro-spinal fluid around his brain – had found it very hard to accept that he had a life-threatening illness and that his life was now out of his control. I had had many anxious conversations and phone calls with him over the days before the operation. I explained that the risks of the surgery, which included death or a major stroke, were ultimately less than the risks of not operating. He laboriously typed everything I said into his smartphone, as if taking down the long words – obstructive hydrocephalus, endoscopic ventriculostomy, pineocytoma, pineoblastoma – would somehow put him back in charge and save him. Anxiety is contagious – it is one of the reasons surgeons must distance themselves from their patients – and his anxiety, combined with my feeling of profound failure about an operation I had carried out a week earlier meant that I faced the prospect of operating upon him with dread. I had seen him the night before the operation. When I see my patients the night before surgery I try not to dwell on the risks of the operation ahead, which I will already have discussed in detail at an earlier meeting. His wife was sitting beside him, looking quite sick with fear.
Does Your Insurance Determine The Type Of Birth Control You Use?
In our new Sexual Studies write-up, we discuss a study in Contraception journal analyzing the differences between women who receive sterilizations vs. IUDs after pregnancy - especially in relation to the type of insurance & the number of previous births they have had.
The United States does not have a spotless history with respect to reproductive health interventions. Our country has a dark past of sterilization where eugenics and coercion—of withholding accurate or complete information about sexual and reproductive health—against the most disadvantaged members of our populations are commonplace. This study reflects that legacy.
There is nothing wrong with women receiving sterilizations if they comprehensively understand their options, and if they are acting under their own agency to make the full choice about a non-reversible contraceptive method: women who have had all the children they wanted, who are concerned about the health or social risks of continued pregnancy, or for innumerable other reasons may know sterilization to be the best choice for them. Yet too often, women are merely not aware of their options or the alternatives, and for that reason, reproductive health care is a social justice issue.
A crazy system. America spends more money per person on its largely for-profit health care system than any other nation in the world although a 2009 census showed 50 million Americans were uninsured. The USA is the only wealthy, industrialized nation that does not ensure that all citizens have health care coverage. High cost of health care in the USA does not equal quality. Life expectancy in the America is 42nd in the world, below most other developed nations and even some developing nations, and infant mortality lags badly too. In 2007, 62% of Americans filing for bankruptcy cited high medical costs.
The American Academy of Pediatrics refutes Michelle Bachmann's anti-Gardasil claims
Here’s a response to Michele Bachmann’s claim that Gardasil, the HPV vaccine, can cause mental retardation. I’m pasting their release in its entirety so I can bold for emphasis.
The American Academy of Pediatrics would like to correct false statements made in the Republican presidential campaign that HPV vaccine is dangerous and can cause mental retardation. There is absolutely no scientific validity to this statement. Since the vaccine has been introduced, more than 35 million doses have been administered, and it has an excellent safety record.
The American Academy of Pediatrics, the Centers for Disease Control and Prevention, and the American Academy of Family Physicians all recommend that girls receive HPV vaccine around age 11 or 12. That’s because this is the age at which the vaccine produces the best immune response in the body, and because it’s important to protect girls well before the onset of sexual activity. In the U.S., about 6 million people, including teens, become infected with HPV each year, and 4,000 women die from cervical cancer. This is a life-saving vaccine that can protect girls from cervical cancer.
Before anyone wants to claim they are not speaking to Bachmann directly, I’d like to remind folks that she’s the only one making the claim that it causes mental retardation.
This is one of the few things, if not the only thing, Rick Perry has done right as governor as Texas. Opponents have this idea that if young girls get the vaccine, they’ll suddenly become sexually active. This assumes that parents are telling girls they are getting a vaccine to prevent cervical cancer caused by a form of an STD and this means they can have all the unprotected sex they want. I’m 100% sure that’s not the case. Parents are also able to opt out of the vaccine requirement if they wish.
To me, Bachmann’s statement is cruel and reckless. Often, women don’t know they have HPV because they display no symptoms - same with men. It’s estimated that by age 50, 80% of women will have contracted HPV, and nearly all cases of cervical cancer are linked to persistent infection with the virus. Bachmann is in favor of jettisoning a measure to prevent a form of cancer simply to score political points.
She belongs with the crowd cheering the deaths of uninsured, because those “innocent little girls” she’s so worried about would see their chances of developing a deadly cancer skyrocket - just so she could outdo her opponents. If that’s not heartless, I don’t know what would be heartless.
Once again I have to simply shake my head and chuckle that anyone expects either the truth or any semblance of rationality from Michelle Bachmann! How many times, like Palin, does this moron have to prove she’s just bat-shit fucking crazy?!
Appeals Court Rules Gene Patents Eligible under US Law
reinventionoftheprintingpress:
NEW YORK (GenomeWeb News) – A US Federal Circuit Court of Appeals in Washington, DC, today ruled that US patent law allows for the patenting of human genes when it overturned an earlier district court decision that tests using isolated human DNA were invalid because genes were natural products.
“Today’s ruling is a blow to the idea that patent law cannot impede the free flow of ideas in scientific research,” said Chris Hansen, a staff attorney with the American Civil Liberties Union Speech, Privacy and Technology Project. “Human DNA is not a manufactured invention, but a natural entity like air or water. To claim ownership of genetic information is to unnecessarily block the free exchange of ideas.”
The ACLU noted that although the court ruled companies can obtain patents on genes, it also ruled against patent methods to compare those gene sequences.
The ACLU, the Association for Molecular Pathology, and other plaintiffs filed suit two years ago against Myriad Genetics and the University of Utah Research Foundation alleging that the BRCA gene patents held by the defendants “stifle research that could lead to cures and limit women’s options regarding their medical care.”
The lawsuit claimed that Myriad’s BRCA gene-related patents are invalid because genes are natural products that cannot be patented, and last year that position won over a US District Court judge in New York.
In its appeal of that ruling, Myriad argued in April that its patent claims on BRCA genes, which it uses in its BRACAnalysis test for predicting individual breast and ovarian cancer risk, are in accord with US patent law.
