sjsci

Intersex health

An interesting angle to take when thinking about difference is to think about ‘not seeing sameness’. This is Asia Friedman’s argument, and is a useful approach for me when thinking about the problems in apprehending difference in the sciences (e.g. Jenny Reardon's Race to the Finish). Friedman argues that, as we ‘filter’ for difference, what other ‘possible bodies and worlds’ are being ‘filtered out’? (Friedman, 2011 and 2013). The historiographies of race in science, as outlined by Jenny Reardon and Dorothy Roberts, show explorations of difference that polarize and divide, often rendering us ‘blind to sameness’ (Friedman, 2013). Friedman (2013; 2011) explains that unconscious processes of perception render us ‘blind to sameness’ (Friedman, 2013). Focusing on sex difference specifically, Friedman explores how substantial similarities are visually transformed into ‘polarized difference’ through attention to difference and disattention to similarities (Friedman, 2011: 200). 

Like the 0.1% genetic difference between human beings (Roberts, 2011), sex differences are proportionally small amid much greater similarity (Friedman, 2011: 201). And that is one way to think about the continuing marginalization of biological sex variance. The example below shows the very real consequences vis-a-vis the differences we pay attention to and the sameness we filter out.

Full article @ http://fullfrontalactivism.blogspot.com/2013/09/where-are-all-actually-medically.html

Claudia Astorino writes:

My intersex variation is androgen insensitivity (AIS) - specifically, complete androgen insensitivity (CAIS)…

In the various searches I’ve done for intersex, there is surprisingly little medical-related research going on that isn’t about new ways to surgically slice and dice our bodies up without our consent… 

While it has been noted that AIS people may have more bone problems like osteoporosis than typical females - and can start having these bone problems earlier - these observations seem to be more anecdotal than anything. There aren’t studies out there indicating when, on average, AIS people start having bone problems, how severe bone problems may be with progressing age, and the secondary effects of these bone problems. Like, I’m kind of worried not knowing what’s going to happen to me…

Something else I wonder about is the supposedly high risk of cancer in intersex gonads. I had a gonadectomy when I was just a few months old … The prevailing wisdom, based on a medical study from 1976, is that intersex individuals are likely to develop gonadal cancer, so routine gonad removal for intersex kids is recommended to avoid cancer risk. I think it’s really unclear whether recommending gonad removal right off the bat is reasonable or medically necessary, however. There hasn’t been a lot of follow-up study since this one study from the 1970’s…

I have no idea if the cancer risks reported in this paper are legitimate. I have no idea if I could have kept all of my body parts intact, could have not needed to take a pill every day for the rest of my life (and pay for them, whether or not I have health insurance) to replace the hormones that my gonads naturally made (for free). 

Medical researchers could be working on this important health concern that’s really relevant to AIS folks like me, but they’re not … They’re not investigating how our bodies work on a basic biological level, so we’ll know what to expect and how to stay healthy during our lifetimes. They’re not figuring out how to better treat us, with new knowledge specific to our various intersex variations. 

They’re just figuring out how to change us…

The historical medicalization of intersexed bodies has somehow failed to take cognizance of the medical needs of intersexed persons…indeed, the discourse pertains to correction and pathologization. The why is obvious, less so how to transform this sedimented reality - of policing gender binaries in particular.

Other interesting reads: 

Gender Dysphoria and Disorders of Sex Development: Progress in Care and Knowledge. Kreukels, Baudewijntje P.C.; Steensma, Thomas D.; de Vries, Annelou L.C. (Eds.) 2013.

Psychological research and intersex/DSD: recent developments and future directions. Katrina Roen, Vickie Pasterski. Psychology & Sexuality. 2013.

Folks! Blog announcement!

So, as a handful of you know, I have been working on a side project with my feminist science and technology studies class and that project is finally ready to go live.  The group of us, as well as a few other students in the field, have been working on a science and social justice tumblr.  It’s called SJSci and you should all check it out! 

“It became very clear that well-intentioned people that wanted to help and, you know, pitch in, really were causing more confusion and chaos,” Alexander said of her time working in Haiti, when she said “everything from church groups to vegan relief teams to Scientologists” flocked to the country.

We’ve been learning a lot in my Feminist Science & Technology course and while this article doesn’t point to any one specific reading for me, I see it as being related to the course on a more general level.

I’ve always been intrigued by the sort of “brainwashing” of western science and practices into other parts of the world. This article reminds me a lot of one of my favorite books, Crazy Like Us: The Globalization of the American Psyche, by Ethan Watters. Watters illustrates specific examples of how some western practices completely undermine other culture’s/society’s standing belief systems.

“[W]e can see an immediate relationship between commodity fetishism and stranger fetishism.  First, the object comes to be valued (is ‘enigmatic’) only through a prior act of detachment from the social relationships of labour and production that produced it.  Second, the object is invested with meaning by being associated with the figure of the stranger: indeed, the object becomes the stranger; it is consumed as that which contains the 'truth’ of the strange or exotic.  The fetishism of the commodity becomes displaced onto the fetishism of cultural difference: we calue the lost object by assuming it contains differece in its own form (a containment which is enabled by a double concealment of the history of its production and the history of determination that allows the stranger to appear). - Sara Ahmed, Strange Encouters, (from chapter 6, "Going Strange, Going Native”)

In her book Strange Encounters, Sara Ahmed engages the allure of the Oriental to explain the relationship between the consuming colonizers and the producing colonized.  Products that promise us the allure of the strange, that conjure the tropes Edward Said illuminates, are desirable by foreign markets because they allow for a safe engagement with the “strange” or unknown.  This safety is produced by the active alienation of production processes, such that the consumer does not need to acknowledge the bodily fact of the other.

The body of the other is always dangerous, hence why the British colonial projects in India placed so much emphasis on the control of the body through law, work, and religion.  Today, we marginalize and abuse the body of the other by means of inhumane working conditions as well as culturally and environmentally destructive relief work and structural adjustment policies.  The global north can participate in these practices, Ahmed suggests, because while we desire the other only as the final link in “a series of metonymic associations” that bind that stranger to a consumable product.  Only when the body is reduced to characteristics, to some vague Orientalist allure, is that body manageable and desirable.

youtube

In this quick interview, Dorothy Roberts explains her project surrounding Fatal Invention, and the ways in which she brings together a variety of sources and sites to explore how the category of race functions within policies surrounding genetics and biomedicine.  Also the program she describes creating sounds super interesting.  

Growing up poor and stressed impacts the brain in adulthood

This week, an article in Science Daily discusses further evidence that our socio-economic realities have material impacts on our health as adults. As we saw in the film Unnatural Causes, findings like these unravel the mythic notions of racial difference in health, pointing to the myriad interwoven social environment which impacts on our overall wellbeing.

Read more here: Science Daily

Image: Childhood poverty impacted how much the two regions of the prefrontal cortex (as shown in orange circles) were engaged during emotion regulation. (Credit: University of Illinois at Chicago College of Medicine)

This article also reminded me about work by a colleague in South Africa. Prof Mark Tomlinson develops a theory of ‘toxic poverty’ which has a range of implications during pregnancy: for the fetus, the child after birth, as well as the pregnant woman. Prof Tomlinson’s work shows the social causation pathways of mental distress among pregnant women (that is, 'toxic’ poverty) and the impacts of this particular cause of mental distress. Depression or anxiety can lead to compromised caregiving capacity, which in turn has repercussions for the child. 

The image below shows the brain sizes of 2 different 3-year-old children. The one on the left is an average sized brain for a 3 year old. The image on the right is of a child who had experienced extreme neglect. This is another example of how socio-economic experiences can shape biological difference. 

A summary of Prof Tomlinson’s upcoming article can be read here: http://blogs.health24.com/blog/2013/08/

youtube

Edward Said’s book Orientalism has been profoundly influential in a diverse range of disciplines since its publication in 1978. In this engaging and lavishly illustrated interview he talks about the context within which the book was conceived, its main themes, and how its original thesis relates to the contemporary understanding of “the Orient” as represented in the mass media.

“That’s the power of the discourse of Orientalism. If you’re thinking about people and Islam, and about that part of the world, those are the words you constantly have to use. To think past it, to go beyond it, not to use it, is virtually impossible, because there is no knowledge that isn’t codified in this way about that part of the world.” -Edward Said


In our Feminist Science Studies Class on Race and Postcolonialism we are discussing orientalism and its relevance today.

youtube

This is an interview with Vandana Shiva by Bill Moyers from this past July.  She discusses genetically modified seeds, globalization, interconnectedness, her background in physics, as well as her newest book, Making Peace with the Earth.  The interview actually begins at 1.59.  

What's so POST about COLONIALISM?

This week, we’re thinking postcolonial thoughts with Kavita Philip (Civilizing Natures: Race, Resources, and Modernity in Colonial South India).

Philip writes that practices and institutions that set up a mutually reinforcing dyad between colonialism and nineteenth century science have, in many instances, been carried over by postcolonial states, ‘along with the foundational assumptions of scientific modernity’, into structures of post-independence government and popular culture (pp 2-4). 

Challenged to think about my own approach to 'postcoloniality’ as a South African, a white woman, and a scholar grappling with notions of the sexed body, 'other’ bodies, in spaces thought of as 'other’ (e.g. Africa), I came across this site: http://zeroanthropology.net/about/

Zero Anthropology is about interrogating what is arguably one of the 'colonial’ sciences. In its most basic sense, it is

a project of decolonization, growing out of a discipline with a long history and a deep epistemological connection to colonialism. The aim is to transform anthropology into something that is neither Eurocentric nor elitist. 

It is about 'unthinking’ anthropology, and 'opening up’ anthropology. 

If anthropology claimed the world for study by Europeans and Americans, ZERO ANTHROPOLOGY is (also) about “the world” reclaiming anthropological knowledge for its own self-understanding, self-expression, and self-identification, or better yet, recognizing that it always had “anthropological” knowledge of its own.

Here is an approach, by a group of diverse scholars and thinkers, which does not try to dismantle, but interrogate colonial epistemological foundations and find what radical possibilities these offer for generative, productive and transformative outcomes today. It is an interesting approach, which works at while recognizing, rather than only critiquing and shutting down, the challenges inherent in any of our approaches to knowledge and/or representation. 

It’s About Neocolonialism

We all struggle with these overlapping, mutually complementing cognate terms that refer to mutually reinforcing processes, terms such as imperialism, colonialism, and neocolonialism. We’ve been through this already, in the first part of the Zero Series (to be continued, I promise). The sense one gets of neocolonialism from all of the above, scattered across blogs, YouTube, and Twitter, and spread among commentators and repeaters from Canada, Trinidad,  Curaçao, Afghanistan, and Australia–is that neocolonialism is internalized and localized, a variant and complement of global imperialism. It’s what makes imperialism work, at the local level, a way of articulating two distinct arenas and fields of interest. The prime actors in the neocolonial setting are not necessarily foreign (though they can be, in the case of imported experts, visiting IMF delegations, and over-sized foreign embassies), nor are the nation-states in question any longer formal political colonies (in terms of tissue thin charters and conventions). They are now post-independent, in more ways than one. The critique of neocolonialism is about a vision of self-rule that is more like management of locals on behalf of foreign interests, with some locals of course benefiting immensely from such arrangements. Ultimately it is about the continuation of colonialism by other means, a force felt, observed, and spoken about worldwide.

Read more here

There is no justifying the brutal actions of the Taliban or the denial of the universal right to education, however there is a deeper more historic narrative that is taking place here. This is a story of a native girl being saved by the white man.

I think this author has a lot of great things to say on this subject. On the other hand, I also feel that a very fruitful debate could be had along the lines of this topic. This article is great and, whether a reader agrees or disagrees with it, it definitely is interesting and leads to a lot of critical thinking!

The other day we discussed the colonial project of naming and how that project was part of larger goal of determining the difference between men and animals.  For European colonizers, that line of distinction often fell on the bodies of people of color, sometimes thought to be a kind of “missing link” in the chain between animal and man.  This understanding resulted in people of color being treated like animals, examined, measured, displayed, etc.  One prominent case of this was “the Hottentot Venus” - Saartje Baartman.  Baartman was essentially captured, measured, and displayed around Europe and after her death her body was cut up and put on show in a museum in Paris until as recently as 1974, when her body was repatriated.

On World Art Day this past year, this history was called up when the Swedish Minister of Art, Lena Adelsohn Liljeroth cut into a cake created by the Afro-Swedish artist Makode Aj Lindes.  The cake was constructed around Lindes, who had darkened his face to match the cake, and who pretended to scream in pain as the cake was cut and then fed to him.  While the piece was quickly decried as racist, that isn’t the whole story.  In this case, we can see the ways in which science has piled racism onto the bodies of black women.  Historically, those bodies have been subject to mutilation as part of a modern progress narrative, and the way in which this racist past was reenacted on World Art Day serves only as a reminder that POC bodies remain vulnerable to exploitation and unethical science.

There’s never been good reason to believe that human beings are naturally racist. After all, in the environment of human evolution–which didn’t feature, for example, jet travel to other continents–there would have been virtually no encounters between groups that had different skin colors or other conspicuous physical differences. So it’s not as if the human lineage could have plausibly developed, by evolutionary adaptation, an instinctive reaction to members of different races.


With the new method, a computer program searches for genes based on the baby’s symptoms. And because it focuses only on genes that cause diseases in newborns, it avoids an ethical problem: findings that are unrelated to the problem at hand. In sequencing and analyzing the entire DNA, researchers may discover, for example, aberrations leading to conditions that occur only in adults. Do parents really want to know that their sick baby has a gene that increases the risk of Alzheimer’s disease?

This new technique solves a number of ethical questions that usually arise with DNA testing.  Because it is used only on children already displaying symptoms of a condition, it is about the avoidance of “heroic measures” resulting in excess suffering for children with fatal conditions and for their families as they struggle to find out what is wrong with their child.  

The major concern that this study leaves unresolved is the class division that biotech innovations always come with - it is only wealthy families who can afford this measure of kindness and dignity, can afford some mitigation of their suffering.  Lower-class families with sick children are expected to suffer and seek for a diagnosis until the very end.

“It became very clear that well-intentioned people that wanted to help and, you know, pitch in, really were causing more confusion and chaos,” Alexander said of her time working in Haiti, when she said “everything from church groups to vegan relief teams to Scientologists” flocked to the country.

While this article doesn’t point to any one specific reading for me, I see it as being related to my Feminist Science & Technology course on a more general level.

I’ve always been intrigued by the sort of “brainwashing” of western science and practices into other parts of the world. This article reminds me a lot of one of my favorite books, Crazy Like Us: The Globalization of the American Psyche, by Ethan Watters. Watters illustrates specific examples of how some western practices completely undermine other culture’s/society’s standing belief systems.

from http://www.huffingtonpost.com/2013/06/19/asexual-spectrum_n_3428710.html … just something to think about

By “natural history,” I do not refer to the study of whole organisms—a recent meaning of the term—but to the different practices of collecting, describing, naming, comparing, and organizing natural objects, practices usually associated not with the laboratory but with the wonder cabinet, the botanical garden, or the natural history museum. Indeed, if there is any feature distinctive to the natural history approach, it is its reliance on collections, which have played a crucial role in natural history from the early modern period to the late nineteenth century, when Victorian sensibilities brought such collections to widespread popularity. In addition to being tools for display, they were often means for producing knowledge about the taxonomies of living organisms, their anatomies, and their histories. Bringing specimens together in a single place and organizing them in a system- atic way made comparisons among them possible and, by analogical reasoning, facilitated their identification and inscription into broader theoretical systems. Those who created the early modern cabinets of curiosity, the royal gardens of the seventeenth and eighteenth centuries, and the great zoological museums of the nineteenth and twentieth centuries all faced the challenges of bringing to a central location specimens that were often dispersed all over the world, securing the participation of individual naturalists, and negotiating the status of the specimens in the collection. The contemporary collectors of experimental knowledge whom I will examine here have been confronted with similar challenges, but in a very different context. They were operating in a community not of naturalists or savants, but of professional experimentalists who had widely different ideas about the epistemic value of collections, the ownership of knowledge, and, more generally, the moral economy of science.
— 

from “The Experimenter’s Museum: GenBank, Natural History, and the Moral Economies of Biomedicine” by Bruno J. Strasser (Isis, March 2011)

In this article, Strasser details some important concerns about knowledge as property in the biotech field.  GenBank, the largest DNA sequence database, is a central part of the conversation about who owns biological material, who gets credit for discoveries, etc.  Individual rights and rewards come up against community values.  The moral economy of experimental science, as Strasser explains, is about individual credit for discoveries (created through publication).  However, as the process of collecting was revised for the modern era, open access to information gained a foothold.  Further, from a historical perspective, the development of GenBank “also indicated that collections were no longer viewed as relics of an archaic past associated with natural history but, rather, as essential tools for the production of knowledge in the experimental life sciences.”

“[Jean Philippe Rushton is] the end of an era of academic racists of his style and notoriety,” Barry Mehler, professor of history and director of the Institute for the Study of Academic Racism at Ferris State University in Michigan, said today. “I don’t think we’ll see that again.’’

That’s not to say that academic racism has died, only its most prominent elder.

Children with Niemann-Pick Type C (NPC), their parents and scientists seeking a treatment for this fatal genetic disease. WSJ follows this 6-year fight.

If activist groups like ACT UP helped to revolutionize the timelines and flexibility of drug trials through such avenues of accessibility as compassionate use, groups like SOAR, made up of citizen-scientists and professionals alike, promise to bring about the next generation of changes in how science approaches deadly, and currently incurable, illnesses.