Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts

Thursday, 21 October 2010

Science: The Art of Living (an interview with Steve Fuller about his latest book))



Q1. Science: The Art of Living is the third book you've written on the science/religion relationship. In what sense does it mark a logical progression in your treatment of this theme?

A1. If you look over the three books – i.e. Science vs. Religion?, Dissent over Descent, and Science: The Art of Living -- you’ll see that I am becoming increasingly explicit about the kind of science-religion world-view that I would promote in the name of ‘humanity’: on the one hand, ‘science’ understood in the broad ‘Wissenschaft’ sense that includes the humanities and theology as sciences; on the other hand, the Abrahamic religions (Judaism, Christianity, Islam) that presumes the unique proximity of humans to God amongst the creatures of nature. A book that precedes these three, The New Sociological Imagination (Sage, 2006), speaks of this unique combination as the ‘anthropic world-view’, which I believe has also justify the interest – perhaps (regrettably) diminishing in our own time – to carve out a special body of knowledge called ‘social science’. I deal with the future prospects for this world-view in my latest book, Humanity 2.0: Foundations for 21st Century Social Thought (Palgrave Macmillan), due out next year. ‘Intelligent design’ (ID) is central to this conception mainly for its sustaining intellectual content, not its current cultural politics, which as everyone knows tends towards the conservative and sometimes even the reactionary. The idea that the natural world might be constructed as the best possible machine has always been a powerful force in motivating the significance attached to scientific inquiry, the intensity of its pursuit and the extent of its application. ID is responsible for that idea – God as The Big Engineer -- which when seen against the backdrop of the world’s creation stories appears very counter-intuitive. The additional degree of specificity that Science: The Art of Living provides that was not present in my earlier work is ‘Protscience’, the idea that science is not merely indebted to the Protestant Reformation for is itself now undergoing its own version of that movement, with people taking science increasingly into their own hands (say, via the internet) in much the same way the Protestants took the Bible into their own hands (via the printing press). For this idea, Richard Dawkins recently interviewed and condemned me as an ‘Enemy of Reason’ in one of his television programmes.

Q2. I gather you're not too crazy about the academic sport of routing and scaffolding works in relation to their forbears, so I hope you can forgive me for asking this question. I guess it speaks more broadly as well to the issue of historical continuity and rupture, so I'll persist: is it at all helpful to contextualise the book in relation to classical sociology? Specifically, I'm wondering if your demonstration of the compatibility of science and religion is designed to avoid the Scylla of scientism and the Charybdis of obscurantism? No less an authority than Weber had warned of the ascendancy of "specialists without spirit" and the "sensualists without heart", operating in a world where the powers that bear down on humans and ordain their callings are not divine, but rather the conditions of modernity itself- specialization, rationalization, and intellectualization. I suspect though you might want to qualify the comparison. Perhaps we could speak then of science as an art of living as a corrective to Weberianism rather than the intellectual and superstitious retreat he himself feared? This would mean that the pursuit of truth and understanding is placed in a communal context within which they can flourish most fully. St. Bernard of Clairvaux might even be cited as setting an early precedent, along with the scientists you positively refer to in your book.
A2. A couple of points here, the first about classical sociology. Just sticking to the Holy Trinity of Marx, Weber and Durkheim, it’s clear that ‘sociology’ began with a focus on ‘religion’ as what ‘modern society’ sought to both supersede and perfect. All three thinkers – as well as sociology’s founder Auguste Comte – appreciated the power of especially the salvation religions to motivate people to organize themselves to do great things for long periods of time. They also realized that the secular world continues to piggyback on this sentiment, while disavowing the underlying metaphysics. This results in various forms of ‘bad faith’ and ‘disenchantment’, which sociology might then address directly (Marx, Durkheim) or indirectly (Weber). I should say that this side of classical sociology was pretty evident when I was a student 35 years ago. But back then, the Holy Trinity was complemented by Pareto and Freud, the great theorists of how old sentiments never entirely disappear but return in new expressions. I believe that the lack of recognition of the religious roots of sociology today reflects the decline of ‘society’ (understood as a unitary entity) as an object of concern within the discipline.

The second point concerns ‘superstition’, which I do not see as something over which religion has a monopoly. In fact, most of our beliefs in science are, strictly speaking, superstitious (a point I made in the first book of mine called Science, published in 1997). Very few people know much about the science in which they believe – they simply know which scientists and theories to name-check when pressed on matters of epistemic authority. Moreover, there is very little cost-accounting for science: The publicity given to ‘brilliant discoveries’ tends to overwhelm science’s failures and disasters, very much like a religion that strings along its believers with periodic miracles amidst the ambient misery of their day-to-day lives. I am not saying that we should therefore junk science altogether: Rather, we should be just as rational when appraising science’s performance as we suppose science itself to be when doing its job properly. Our belief in science’s rationality should not cause us to hold that belief irrationally. A similarly paradoxical point originally led the Protestants to question Catholic authority: The Catholics simply required the believer to declare loyalty to the Church and perform various rituals without necessarily ever encountering the doctrine first-hand to decide for themselves whether they truly believe it. While this practice certainly kept a lot of Christians under the same tent, it emptied the act of believing of any specific epistemic content. ‘Protscientists’ of the sort described in Science: The Art of Living feel exactly the same way vis-à-vis science – which is why they engage so actively with internet-based projects, most impressively Wikipedia.

Q3. Quantum mysticism has been used as an example of the Charybdis of postmodern obscurantism. This brings us to the elephant in the room. One of the biggest misconceptions about you is that you are a postmodern "relativist" for whom "anything goes". You've previously expressed a preference for metarelativism instead. Can you relate this term to what you call "Protscience" in this, your new book?

A3. No one who is sympathetic to my work – and that includes people who would call themselves postmodernists and relativists -- considers me a postmodernist or a relativist. This misconception is a great example of how people who may have some of the same intellectual/cultural/political enemies are seen as sharing a common world-view. The relevance of Protscience to this issue is that Protestants do not give up on the universal aspirations of Christianity, and neither do Protscientists. Protestantism is not a relativistic form of Christianity; otherwise, it would not so actively proselytise for people to join their particular denominations, even to the point of provoking conflict. Relativism tends to be associated with a quiescent politics in which tolerance is taken to be an end in itself. (This is a ‘metarelativist’ point – i.e. it relativises relativism.) Yet, science requires the sort of conflict whereby people routinely challenge each other’s grounds of faith because they presume to be in a common project to reach some (divine) endpoint, aka Truth. Science’s great institutional innovation has been to pursue this potentially quite volatile project in dedicated spaces within clearly defined rules of play. As Popper said, echoing Goethe, in science our ideas die in our stead. However, nowadays the scientific establishment, very much like the Catholic Church in the 16th century, is institutionalised almost to avoid conflict altogether, even if that suppresses critical lines of inquiry.

Q4. Did you consider including a discussion of bioethics in your book, as they too would seem to inform science as an art of living? You would be aware that there is a substantial body of work in Christian bioethics, which would surely have some bearing on the science/religion themes you discuss? I suspect you steered clear of it though because it lacks the left/right association with liberation theology you foreground through Protscience, substituting instead a moralization (Good vs Evil) of politics. Charles W Colson comes to mind, for example. Is this a fair summation?

A4. You raise an interesting point. It’s difficult to deal with Christian bioethics – or, for that matter, any bioethics underwritten by a strong sense of natural law – if you take seriously the idea that humanity is collective project ‘under construction’, as it were. The main stumbling block is the tendency for believers in natural law to essentialise the human, as if there were demarcation criteria for human nature that could be read off a hereditary feature of our animal being, e.g. a moment in antenatal development or a pattern of nucleic acids on the genome. Here a remarkable – and often diabolical – alignment of followers of Aristotle, Aquinas and Darwin (at least conservatives ones) sing from the same bioethical hymn sheet. They have similar views about the boundaries of the human, even in terms of judgements of ‘abled’ versus ‘disabled’. Where they differ, of course, is that Christians would not demean or exterminate the ‘disabled’. In that respect, I find Gregor Wolbring’s doctrine of ‘able-ism’ a useful antidote to this whole line of thought, as it points to the status of ‘ability’ as what welfare economists call a ‘positional good’, such that one’s standing as ‘abled’ or ‘disabled’ depends on an ever shifting norm of societal expectations about human performance. Thus, what it means to be a fully able-bodied human is something in principle always up for negotiation, which is to say, that all rights are civil rights.

Q5. I want to come at the science as an "art of living" ideal from another angle. At least initially, it brings to mind how "art for art's sake" can make an activity appear to be an end in itself, which would put us back in the camp of Weber's "sensualists without heart". Because the book does not use your preferred title, I have to ask whether aestheticism per se is a central concern?

A5. As normally understood, ‘aestheticism’ is not central to the book. I interpret the ‘art of living’ motif of the series in terms of ‘artifice’ – that is, life is not something naturally lived but only lived with a sense of purpose, which implies some sort of discipline designed to realize that purpose. Science, with its valorisation of intellectual focus and constrained observation, clearly constitutes ‘art’ in that sense. Max Weber was clearly one of the master performers and interpreters of this art. But there is no denying that the “art for art’s sake” ideology was partly motivated by a Romantic analogy between God and human as artificer, which was central to intelligent design’s role in motivating the Scientific Revolution. However, the Scientific Revolutionaries were much more inclined to convert the analogy into an identity – that is, they thought they could not only create like the deity but also discover how the deity creates.

Q6. In a recent article published in History of the Human Sciences, you argue that the legacy of aestheticism has been mostly harmless, while the more subjective advocacy journalism has been tainted to some extent by its historical association with authoritarianism, citing the examples of H.G. Wells, J.G. Crowther, and Waldemar Kaempffert- all of whom "leveraged contemporary developments into visions of future utopias". Are you willing to characterize your own book as a form of advocacy journalism?

A6. Actually, in one sense, the book is a piece of advocacy journalism, since I do believe that science requires the kind of world-view-style justification that theology has traditionally given it. Whether theology is up to the task nowadays is another matter, especially given that so much theology is, in practice, bound up with pastoral functions. Science, understood as the ultimate risk-seeking collective enterprise in human history, sits uncomfortably with forms of theology that seek mainly to provide a sense of solace and security in an uncertain world. Of course, not all theology is like this. More millenarian, emancipationist forms of theology have played on Biblical themes that stress the empowerment of humanity through recognition of its godlike character. But it is difficult to push this line consistently without challenging church authority, a problem that especially Catholic clerics ranging from Pierre Teilhard de Chardin to Gustavo Gutierrez (the founder of liberation theology) have experienced in recent times when they have pushed the implications of theology into anti-establishment readings of contemporary science and politics, respectively. But of course, science itself suffers as much from the problem of authoritarian lockdown as theology. This is acutely registered by the Popperian purist – perhaps me – who upholds that science is really in its own element when it is in what Popper himself called (with a nod to Trotsky and a slight to Kuhn) ‘permanent revolution’, which is to say, testing even fundamental assumptions by using one’s own reasoning and experience – not by deferring to expert opinion.

Q7. Why does it appear to be the case though that the people who most publicly condemn the human condition’s casualization in the modern world are conservatives, (i.e. Charles W Colson Syndrome again) who often turn the natural law tradition to their own ends? In this vein, the writings of Teilhard, who you positively refer to in your book, could become caricatured by some as an authoritarian form of advocacy journalism. After all, Teilhard entrusted the leadership of socialization to an elite, who were to guard against the "mass of humanity", who he regarded as "profoundly inferior and repulsive". With the hierarchic structure of nature left unchallenged, Teilhard was free to recommend eugenic measures to deal with "life’s rejects" (Human Energy [Collins, 1969], pp. 132-133). This doesn't appear to sit too well with your previous critical stance towards Peter Singer's expressed desire to expand the "moral circle" at the expense of disabled humans. What should we be looking for here?

The sanest attitude towards ‘eugenics’ is to regard it as a politically incorrect term for the most basic feature of the normal processes of social reproduction. One does not need to contemplate breeding farms, sterilisation clinics and gas chambers to engage in eugenics. Persistent class differences, and their associated patterns of nutrition, health and income flows, have always carried out the workings of natural selection in the guise of social structure. This point was very clear to Francis Galton, who coined ‘eugenics’ in the 1860s in the aid of rationalising an otherwise mindless reproduction of social structure. (His main bugbear was the hereditary UK House of Lords.) Indeed, Galton thought he was providing the foundations for a scientifically self-conscious social policy – not merely an extension of evolutionary biology to human beings, as eugenics now tends to be seen. I make this point because the main ethical cloud that continues to hang over eugenics is the tendency of its advocates – and this was especially true in Nazi Germany – to present eugenic policies as if they were simply carrying out the orders of ‘Nature’ rather than taking personal responsibility for engaging in a quite specific risky policies to design the future of humanity. Had the eugenicists consistently presented their work as a political project, rather than as an anonymously imposed scientific imperative, then it could have been discussed more in the agonistic spirit of, say, radical economic policies calling for massive income and resource re-distribution. In fact, I hope that eugenics comes to be normalised in political discourse in just this way, whatever its concrete outcomes. However, at the moment, as you say, we are living in a time when eugenics is simply carried out ‘casually’, that is, through many individually made choices about whether to abort, mercy kill or genetically modify – the collective effect of which is then, by definition, a by-product. In The New Sociological Imagination, I called this state of affairs, whereby a free market approach to eugenics approximates the indirect workings of natural selection, ‘bioliberalism’. In that respect, we seem to be (regrettably) making the long march back to the time before Galton entered the picture.

Q8. I assume minimising these kinds of risks gets back to the principle of epistemic justice integral to social epistemology: i.e. holding people accountable for not only the intended consequences of their discourses/actions? Is this sense of justice intended to complement one of your stated objectives of science as an art of living, where you discuss (page 135), "the ease with which we normally declare someone’s death an “injustice”, describing how this ease "first of all, capitalizes on some sense of its prior improbability, combined with a foreshortened view of the person’s past and an indefinitely extended view of his or her future. This leads us to treat the death as having happened “before its time’”. One objective of science as an art of living would be to redress this temporal asymmetry, enabling us to acquire the affect needed to put the value of a person’s life in a more historically balanced perspective. This may include, for example, a realization that, given a rounded view of the relevant biosocial background, the deceased had already reached his or her potential, leaving others now better placed to carry forwards that achievement". Could you please elaborate on what standard of proof is indicative of "potential", "achievement", and "the relevant biosocial background", when determining if a "temporal asymmetry" is unjust?

A8. This is quite a complex but important issue. The first point is that the very idea that one can live ‘scientifically’ presumes that God and humans differ in degree, not kind. This is the sense in which the Abrahamic religions and modern science are joined at the hip: God is the creator of that which science can know. In practice, this means that scientific judgements are always inferior versions of godlike judgements, which may be improved over time. Moreover, ‘God’ in this context is not only the source of reality’s intelligibility but also a being who stands equidistant from all points in time and space, which I take as an operational definition of ‘transcendence’. This implies that God knows the past as well as he does the future because everything is equally present to his mind. In contrast, a creature who knows the past so much better than the future that it is inclined simply to repeat the past indefinitely is an animal. Humans, of course, are at least animals in this sense and, philosophically speaking, it explains the lure of induction as way of knowing the world. However, one of the godlike goals of science is to produce symmetry in our knowledge of the past and the future, which means both distrusting the security of our attachment to the past and empowering us in our capacity to determine the future. Modernity is largely about striking just this temporal balance in order to raise us above the animals: a deconstructive attitude to the past and an experimental attitude to the future, both pursued simultaneously. Now, this general strategy clearly has implications for how we think about individual lives, especially in terms of whatever ‘injustices’ we currently ascribe to unexpected deaths, which may come to be seen as exaggerated, once we grant ourselves greater knowledge of future prospects.

Q9. Finally, I understand you cannot divulge much here about your two forthcoming books, which sound intriguing- particularly for readers of this blog- Humanity 2.0. I get some clues from Science as an Art of Living where you might take a discussion of transhumanism, but wonder if you have anything to add? Any idea yet on a publication date?

A9. Humanity 2.0 should be out in the first half of 2011, since it is already with the publisher (Palgrave Macmillan) and being looked over by reviewers. I am broadly supportive of transhumanism, but I definitely see it as a movement that continues Abrahamic theology by other means – which is something that I think only some self-described ‘transhumanists’ realize. For one thing, transhumanism is a completely counter-Darwinian idea, since it projects all sorts of normative utopias about the successor species to Homo sapiens that Darwin’s specific brand of evolution would deem a folly. Here it is worth recalling Darwin’s own refusal to embrace eugenics, when Galton, his cousin, approached him for an endorsement. Darwin really believed that humans were just one more – perhaps the latest – species to spend a few million years on the planet and then become extinct like the others. There is nothing in Darwin to suggest the sort of capacity, let alone entitlement, ascribed to humans that motivates the often science-fictional enthusiasms of transhumanists. Bluntly put, Darwin did not believe that humans could take control of evolution – but transhumanists do. I am with the transhumanists on this one, and they should be as well! I believe that it is not accident that the likes of Norbert Wiener, Herbert Simon and Ray Kurzweil are all Unitarians, the Abrahamic faith that posits the most direct connection between humans and God.

It is here that one might find the basis for mounting what I have begun to call a Creationist Left, that disembeds intelligent design theory from its current cultural-political moorings in American Christian fundamentalism. Since such a negative social stigma is attached to the label ‘creationist’, it’s perhaps worth belabouring what I consider very obvious based on the historical record: namely, that the strongest motivation we have for pursuing science in the manner and with the intensity that we have for the last 400 years or more has been that we have supposed reality to be ‘intelligible’, which is to say, constructed so as to enable our rational understanding of it. This is a ‘creationist’ position because it imagines that reality is itself an artefact comparable to ones made by our own hand – only much greater. And of course I am talking about some high-tech secular descendant of the Abrahamic God as the grand artificer. If we really believed, as Darwinists insist, that reality has come to acquire the order we perceive by essentially random processes that produce at best transient stabilities, then we would never have focused so much effort on science in the first place, nor value its results so highly. Such a metaphysics would doom the scientific enterprise to long-term failure. Nevertheless, the exceptional value placed on science and its ‘mechanical world-view’ has been the calling card of modern Western culture, especially when seen against the backdrop of the world’s cultures, including the ancient Greeks and Romans. This point about the world-historic significance of Creationism is true and can be made quite independently of any specific claims about particular churches or dogmas. Here readers of a sociological bent are instructed to look at the work of Rodney Stark, who has documented this point over several books. Of course, it is ideologically convenient to pigeonhole ‘Creationism’ as an aberration from the general decline of religion in an increasingly secularised world – but it would be misleading, both in terms of understanding the science-religion relationship in world history and where it is likely to head in the future.


Saturday, 25 September 2010

Fixed: the science/fiction of human enhancement



What does disabled mean when a man with no legs can run faster than many Olympic sprinters? With prenatal screening able to predict hundreds of probable conditions, who should determine what kind of people get to be born? If you could augment your body's capabilities in any way imaginable what would you do? From pre-implantation genetic diagnosis to neural implants to bionic limbs, researchers around the world are hard at work developing a myriad of technologies to fix or enhance the human body. What does it mean to design better humans and should we want to?

FIXED takes a critical look at the direction of emerging human enhancement technologies through the eyes of three people with significant disabilities a scientist, a journalist, and a community organizer who each play very different roles in this developing field. Gregor Wolbring is a biochemist, bioethicist and disability and ability studies scholar at the University of Calgary, in Calgary, Alberta and lectures worldwide on human enhancement technologies and ableism. John Hockenberry is an Emmy and Peabody award winning journalist, author and distinguished fellow at the MIT Media Lab where he works to promote research into human-machine collaborations. Patty Berne works at the Center for Genetics and Society as the Director of the Project on Race, Disability and Eugenics where she focuses on raising awareness about the ethical implications of emerging prenatal screening technologies. What these three individuals a scientist, a journalist and a community organizer — all have in common is a personal experience with disability and a passionate engagement in the debates around human enhancement technologies and yet what they are each fighting for is quite different. Through their unique experiences of both living with a disability and being experts in their field, what emerges is a textured debate that tackles some of the most pertinent social and ethical questions of today. MIT neuroscientist Ed Boyden, transhumanist James Hughes, MIT robot scientist Rodney Brooks, and bioethicist Marcy Darnovsky also contribute to deepening the issues, revealing the social tensions that underlie these emerging technologies in surprising ways.

Through a dynamic mix of verite, archival and interview footage, FIXED: THE SCIENCE/FICTION OF HUMAN ENHANCEMENT challenges notions of normal, the body and fundamentally what it means to be human in the 21st century.

Produced, directed and edited by Regan Brashear.
Trailer edited by Josh Peterson.
The full documentary is currently in post-production.

If you would like to make a tax-deductible donation to support the completion of the film or to sign up for our mailing list, please email info@fixedthemovie.com

Saturday, 17 January 2009

Splice


I remember when Bernard Wolfe's novel Limbo was critically discussed in How We Became Posthuman. Well, I just posted on Cube, only to learn that Natali is supposed to be filming Splice. I hope it will be something like Limbo (just imagine the politics of representation involving disability rights and biotech it could raise, shades of Gattaca). I'm getting the feeling though that an adaptation of Limbo, or even something in its spirit, will have to await another day. But there's still a lot to look forward to I think with Natali's film. This is what Wikipedia has to say about it:

Splice was written by director Vincenzo Natali and screenwriters Doug Taylor and Antoinette Terry Bryant.[2] The script was originally meant to follow up Natali's Cube (1997), but the budget and restricted technology hindered the project. In 2007, the project entered active development as a 75% Canadian and 25% French co-production, receiving a budget of $26 million.[3] The director described the film: "Splice is very much about our genetic future and the way science is catching up with much of the fiction out there. "[This] is a serious film and an emotional one. And there's sex... Very unconventional sex. The centerpiece of the movie is a creature which goes through a dramatic evolutionary process. The goal is to create something shocking but also very subtle and completely believable."[4]



A brief interview with Natali here.

Wednesday, 10 December 2008

"Useless Eaters" & Synthetic Biology

Francis Galton, who coined the word "eugenics" in 1865, envisioned a system of artificial selection whereby society would permit people with "desirable" qualities to have children (positive eugenics), while individuals with "undesirable" traits would be prevented from having children (negative eugenics). For a thirty-year span, between 1900 and 1929, the eugenics movement captured the attention of America’s leading reformers, academicians, professionals, and political leaders, including industrialist John Kellogg, inventor Alexander Graham Bell (who advocated sterilization of the deaf and the dismantling of deaf people's culture), and women’s rights advocate Margaret Sanger. By the early 1930s, however, the climate that had been receptive to eugenics in America had broken down. Several factors led to the downfall of the American eugenics movement, including the Stock Market crash of 1929, scientific discoveries in the new field of genetics, and public mistrust of the restrictions on marriage and childrearing that selective breeding required. The rise of Nazism in the 1930s completely discredited the eugenics movement for the next four decades. Eugenics re-emerged as a scientific endeavor—and as a social issue—following the advent of biotechnology in the early 1970s, when bacterial DNA from two different species was combined by two researchers, Stanley Cohen of Stanford University and Herbert Boyer of the University of California. Although the Cohen-Boyer experiment involved rDNA technology, it demonstrated the possibility of direct gene manipulation, and scientists rapidly saw the potential use of the technique in human-gene therapy.
Human-gene therapy is a procedure in which defective (faulty) copies of a gene are replaced with non-defective (functional) copies. For example, Severe Combined Immuno-Deficiency syndrome (SCID) is a genetic disorder caused by mutations in a single gene, adenosine deaminase (ADA), which is on human chromosome 20. Individuals who possess two defective copies of this gene cannot make the protein adenosine deaminase; thus, they do not possess a functioning immune system. Gene therapy treatments for SCID involve putting non-defective copies of ADA into the DNA of an affected individual’s bone cells, allowing them to make adenosine deaminase. Gene therapy can either be used to treat individuals who already have a genetic disorder (somatic cell therapy), or to correct genes in sperm, eggs, or embryonic cells (germ-line therapy). Germ-line therapy gives scientists the ability to change an individual’s genetic makeup before they are born, or even conceived.
The treatment of highly deleterious genetic disorders does not create public anxiety about gene therapy. Cosmetic gene therapy, however, conjures up images of a new eugenics because it not only allows healthy individuals to change their physical appearance and/or behaviors through gene manipulation, but allows these changes to be passed down to future generations. Molecular biologists have already isolated the genes that code for many physical traits, such as skin color, baldness, and stature. In addition, some scientists claim to have found genes that code for complex behaviors, such as shyness and homosexuality. Although many of these arguments have been shown to be fallacious, popular press coverage has contributed to the growing public belief that behaviors are genetically determined. Even granting the dubious character of some of these more sweeping claims, it is almost certainly the case that within the next few decades our increasing knowledge of human genetics, combined with germ-line therapy, will enable us to produce custom-designed genetic individuals.

Inevitably, when the bioethical issues surrounding eugenics are discussed, one of the first images conjured up is of the blond-haired, blue-eyed, light-skinned "Aryan race" as envisioned during the Nazi eugenics program (note Flash Player required to view Mark Mostert's site). The new eugenics, however, will encompass not only such physical characteristics as skin, eye, and hair color, but will potentially include genetic manipulation of behaviors and personality. Thus, anxiety over a new eugenics is predicated upon the belief that all human traits are genetically determined in the first place. Genetic determinism, which is also known as bio-determinism or genetic essentialism, is the belief that human behavior, personality, and physical appearance are determined exclusively by a person’s genetic makeup. Genetic determinism is a reductionist ideology in that it seeks to explain a complex whole (a human being) in terms of its component parts (individual genes). Richard Lewontin, Steven Rose, and Leon Kamin, biologists and longtime critics of genetic determinism, summarize the basic ideology as follows:
Biological [genetic] determinists ask, in essence, Why are individuals as they are? Why do they do what they do? And they answer that human lives and actions are inevitable consequences of the biochemical properties of the cells that make up the individual; and these characteristics are in turn uniquely determined by the constituents of the genes possessed by each individual. Ultimately, all human behavior—hence all human society—is governed by a chain of determinants that runs from the gene to the individual to the sum of the behaviors of all individuals.
Considering that the goal of eugenics is to improve humanity through genetic manipulation, it is clear that a eugenics program cannot succeed unless genetic determinism is accepted as the true state of the world. Gene therapy will lead to a new eugenics only if society follows to some degree a genetic-determinist ideology.

But for this ideology to take hold, it would have to be a symptom of a very powerful logic of commodification. Some sense of what will be at stake is discernible from the following debate, in which Jim Thomas questions the assumption that a movement to "open source" will automatically provide the needed safeguard against corporate oligopolies and militarization. Thomas draws some much needed lessons from history to encourage greater public accountability.


Tuesday, 30 September 2008

Call for papers: On the impact of nanoscale science and technology on disability,

I'm in a big hurry today, so just time to cross post this request from Gregor Wolbring. If I'd had the opportunity, I would've edited some of the garbled coding in his text, but even without this improvement, the references are still clear and hence usable. Moreover, the issues raised are extremely important, so definitely worth drilling down through the layers to get to the good stuff.
For a special issue of the International Journal on Disability, Community & Rehabilitation (IJDCR) (http://www.ijdcr.ca/copyright.shtml)

Guest Editor: Gregor Wolbring, Community Rehabilitation and Disability Studies Program, Dept of Community Health Sciences, University of Calgary. <gwolbrin@ucalgary.ca>

Invitation
Nanoscale science and technology, while still in its infancy, describes a rapidly growing sphere of enquiry, with many and varied implications for the disability field. To establish a ‘benchmark’ of the current state of knowledge and conceptual understanding, the Editors of IJDCR decided a special issue should be devoted to the topic. Background information and potential topics are presented below.

We invite potential contributors, regardless of fields of study (discipline), to submit 250-word Abstracts that articulate the conceptual arguments and knowledge base to be covered in a critical analysis on some aspect of the impact of nanoscale science and technology on disability, community and/or rehabilitation. Please submit abstracts to the Guest Editor via e-mail by 30 October, 2008.

From selected abstracts, we will request full articles of 3000-5000 words (excluding figures and tables) of original research and scholarship on a range of topics. Note that an invitation to submit an article does not guarantee its publication. Every submitted article will be subject to blind peer review and recommendations arising.

Background
Nanotechnology in all its meanings allows for, among other things, the manipulation of materials on an atomic or molecular scale and enables a new paradigm of science and technology that sees different technologies converging at the nanoscale namely:
nanoscience and nanotechnology,
biotechnology and biomedicine, including genetic engineering,
information technology, including advanced computing and communications,
cognitive science (neuro-engineering),
synthetic biology;
hence, the designation "NBICS" (nano-bio-info-cogno-synbio).

Many lists of anticipated nanoproducts exist ADDIN REFMGR.CITE Institute of Nanotechnology20052326Research Applications And Markets In Nanotechnology In Europe 2005Report2326Research Applications And Markets In Nanotechnology In Europe 2005Institute of Nanotechnology2005ResearchNanotechnologyEurope reprint>Not in Filehttp://www.researchandmarkets.com/reportinfo.asp?report_id=302091&t=t&cat_id=424Kostoff20062330The seminal literature of nanotechnology researchJournal2330The seminal literature of nanotechnology researchKostoff,RonaldMurday,JamesLau,CliffordTolles,William2006/5LiteratureNanotechnologyResearchNot in File121Journal of Nanoparticle Research <>name=" target=_blank ISSN_ISBN>http://www.wtec.org/ConvergingTechnologies/Report/NBIC_report.pdf33;(M.Roco 2003). Many believe that advances in NBICS hold the key for extreme life extension to the level of immortality and the achievement of morphological ADDIN REFMGR.CITE Anders Sandberg2001159 Morphological Freedom -- Why We not just Want it, but Need itGeneric159 Morphological Freedom -- Why We not just Want it, but Need itAnders Sandberg2001Not in Filehttp://www.nada.kth.se/~asa/Texts/MorphologicalFreedom.htm33; (Anders Sandberg 2001) and genomic freedom ADDIN REFMGR.CITE Wolbring20031877SCIENCE AND TECHNOLOGY AND THE TRIPLE D (DISEASE, DISABILITY, DEFECT)Book Chapter1877SCIENCE AND TECHNOLOGY AND THE TRIPLE D (DISEASE, DISABILITY, DEFECT)Wolbring,G2003ScienceTechnologyDiseaseDISABILITIESNanotechnologyBiotechnology Cognitive ScienceNot in File232243Converging Technologies for Improving Human Performance: Nanotechnology, Biotechnology, Information Technology and Cognitive ScienceMihail C.Roco National,William Sims BainbridgeDordrechtKluwer Academic1-4020-1254-3http://www.wtec.org/ConvergingTechnologies/http://www.bioethicsanddisability.org/nbic.html3;(Wolbring 2003). NBICS-medicine is envisioned by some to have the answer to global problems of disease and ill medical and social health. Others argue for the pursuit of ‘morphological freedom’ ADDIN REFMGR.CITE Anders Sandberg2001159 Morphological Freedom -- Why We not just Want it, but Need itGeneric159 Morphological Freedom -- Why We not just Want it, but Need itAnders Sandberg2001Not in File
http://www.nada.kth.se/~asa/Texts/MorphologicalFreedom.htm
33> t;
(Anders Sandberg 2001)--allowing the human body to move beyond typical functioning of the species. Disabled people are often highlighted as the beneficiaries of NBICS-medicine products. NBICS applications and the selling of NBICS health products focuses mostly on offering disabled people medical solutions (prevention or cure/normative adaptation) and might move towards transhumanist solutions (augmentation, enhancement of the human body) but rarely offers social solutions (adaptation of the environment, acceptance, societal cures of equal rights and respect). Many NBICS applications/products for disabled people are envisioned and are under development ADDIN REFMGR.CITE Wolbring20051706HTA Initiative #23 The triangle of enhancement medicine, disabled people, and the concept of health: a new challenge for HTA, health research, and health policyReport1706HTA Initiative #23 The triangle of enhancement medicine, disabled people, and the concept of health: a new challenge for HTA, health research, and health policyWolbring,G2005MedicineHealthResearchNot in FileAlberta Heritage Foundation for Medical Research, Health Technology Assessment Unit, Edmonton, Alberta CanadaISBN 1-894927-36-2 (Print); ISBN 1-894927-37-0 (On-Line); ISSN: 1706-7855 http://www.ihe.ca/documents/hta/HTA-FR23.pdf24;(Wolbring 2005).

We chose this topic for an issue of IJDCR because of how the discourses around these new and emerging nanoscale science and technologies are emerging and their potential impact on people with disabilities, the communities linked to them and/or practitioners as well as others. Consumers and researchers linked to the disability discourse are involved will shape the positive or negative consequences for everyone involved.

Nanotechnology and NBICS have an impact on disabled people in at least four main ways.

Impact of NBICS on disabled people ADDIN REFMGR.CITE Wolbring20062426Scoping paper on Nanotechnology and disabled peopleElectronic Citation2426Scoping paper on Nanotechnology and disabled peopleWolbring,G2006NanotechnologyNot in FileCenter for Nanotechnology in Society Arizona Stat e University http://cns.asu.edu/cns-library/documents/wolbring-scoping%20CD%20final%20edit.doc <> name="System">Center for Nanotechnology in Society Arizona State University34(Wolbring 2006)
NBICS may develop tools to adapt the environment in which disabled people live and to give disabled people tools that would allow them to deal with environmental challenges. This side of S&T would make the life of disabled people more liveable without changing the identity and biological reality of the disabled person
NBICS may develop tools that would diagnose the part of disabled people’s biological reality seen by others as deficient, defect, impaired and ‘disabled’ thus allowing for preventative measures
NBICS may develop tools that would eliminate that portion of disabled people’s biological reality seen by others as deficient, defect, impaired and ‘disabled’.
NBICS may be a target for - and an influence upon - the discourses, concepts, trends and areas of action that impact disabled persons.

Discourses:
The discourse around the term human security
The religious discourse
The politics of biodiversity
The politics of inequity
The politics of the ethics discourse.
The politics of law:
The politics of raising the acceptance level for a given technology
The politics of setting goals and priorities
The politics of language
The politics of self perception and identity (Body politics)
The politics of red herrings
The politics of interpreting International treaties
The politics of governance
The Politics of evaluation, measuring, analysis, and outcome tools

Concepts:
Self identity security
Ability security
Cultural identity/diversity
Morphological freedom and morphological judgement ADDIN REFMGR.CITE Anders Sandberg2001159 Morphological Freedom -- Why We not just Want it, but Need itGeneric159 Morphological Freedom -- Why We not just Want it, but Need itAnders Sandberg2001Not in Filehttp://www.nada.kth.se/~asa/Texts/MorphologicalFreedom.htm <> mID>33(Anders Sandberg 2001)
Freedom of choice and tyranny of choice
Duty to fix oneself
Duty to know
Parental responsibility
Societal responsibility

Trends:
Change in the concepts of health, disease and ‘disability’/’impairment’
The appearance of enhancement medicine and the acceptance of beyond species-typical functioning
Moving from curative to enhancement medicine; decrease in curative medicine and the appearance of the transhumanist/enhancement burden of disease
Moving from human rights to sentient rights
Moving from morphological freedom to morphological judgement
The appearance of the techno poor disabled and impaired
Moving from freedom of choice to tyranny of choice judgement

Areas of Action:

Nanotechnology/NBIC for development
Nanotechnology/NBIC and the UN Millennium Development Goals
Nanotechnology/NBIC and global medical and social health
Nanotechnology/NBIC and accessibility
Nanotechnology/NBIC and law
Nanotechnology/NBIC and water and sanitation
Nanotechnology/NBIC and disaster management
Nanotechnology/NBIC and weapons/war
Nanotechnology/NBIC and ethics/philosophy
Nanotechnology/NBIC and social science/anthropology
Nanotechnology/NBIC and community
Nanotechnology/NBIC and networking


All of the above discourses, concepts, trends and areas of actions impact on disabled people[1] and others.
Potential contributors to this Special Issue might consider areas from the above table or one of the following topics:
What are the potential positive and negative impacts of envisioned nanoscale science and technology products and research and development on:
disabled people,
the community around them
practitioners, consumers and researchers linked to the disability discourse
community rehabilitation and the rehabilitation field in general
inclusive education and the education of disabled people in general
employability of disabled people
citizenship of disabled people
body image of disabled people
medical and social health policies and their impact on disabled people
health care for disabled people
the elderly
disabled people in low income countries
laws related to disabled people such as the UN Convention on the rights of persons with disabilities
the concept of personhood
concept of health and health care
the measure of disability adjusted life years and other measurements used to guide health care dollar allocation
quality of life assessment
What are the potential positive and negative impacts of the new social philosophy of transhumanism that is seen as being enabled by nanoscale science and technology products and research and development?
What impacts of potential nanoscale science and technology products and research and development onto disabled people will impact other marginalized groups?
For more information about the International Journal of Disability, Community & Rehabilitation (IJDCR) please go to http://www.ijdcr.ca/.
ADDIN REFMGR.REFLIST References

Anders Sandberg. Morphological Freedom -- Why We not just Want it, but Need it. 2001. <http://www.nada.kth.se/~asa/Texts/MorphologicalFreedom.htm>
Institute of Nanotechnology (2005). Research Applications And Markets In Nanotechnology In Europe 2005 <http://www.researchandmarkets.com/reportinfo.asp?report_id=302091&t=t&cat_id=4>
Kostoff, Ronald et al. "The seminal literature of nanotechnology research." Journal of Nanoparticle Research (2006): 1-21. <http://www.springerlink.com/openurl.asp?genre=article&id=doi:10.1007/s11051-005-9034-9>
M.Roco, W. Bainbridge eds. Converging Technologies for Improving Human Performance: Nanotechnology, Biotechnology, Information Technology and Cognitive Science. 2003. Kluwer Academic Publishers, Dordrecht Hardbound. <http://www.wtec.org/ConvergingTechnologies/Report/NBIC_report.pdf>
Wolbring, G. "SCIENCE AND TECHNOLOGY AND THE TRIPLE D (DISEASE, DISABILITY, DEFECT)." Ed. William Sims Bainbridge Mihail C.Roco National. Dordrecht: Kluwer Academic, 2003. 232-43<http://www.wtec.org/ConvergingTechnologies/> <http://www.bioethicsanddisability.org/nbic.html>
Wolbring, G (2005). HTA Initiative #23 The triangle of enhancement medicine, disabled people, and the concept of health: a new challenge for HTA, health research, and health policy Alberta Heritage Foundation for Medical Research, Health Technology Assessment Unit, Edmonton, Alberta Canada <http://www.ihe.ca/documents/hta/HTA-FR23.pdf>
Wolbring, G (2006). Scoping paper on Nanotechnology and disabled people. Center for Nanotechnology in Society Arizona State University [On-line]. <http://cns.asu.edu/cns-library/documents/wolbring-scoping%20CD%20final%20edit.doc>

[1] The term ‘disabled people’, as used here, reflects the way in which environmental factors impact on the ability of individuals with sensory, motor, cognitive or other variations to participate in society, consistent with its usage by Disabled Peoples’ International.

Friday, 18 July 2008

Superchicks, clones, cyborgs, and cripples: cinema and messages of bodily transformations


What I've done here is reproduce a very hard to find article published by Helen Meekosha in:

Social Alternatives vol 18, no 1, January 1999.

Helen sent it to me in reponse to a request when I was researching my thesis a few years back. As the piece is already in the public domain, I can't see any problems in archiving it here, as long as anyone who might happen to cite it refer to the original source. My hope is in part to give the piece wider exposure by posting it here. I have tried to find some relevant imagery to illustrate her argument about Alien Resurrection, and although this risks accusations of sensationalism on my part, the real motivation is knowing how many visitors to this blog use Google image searching as their entry point. So the images may be enough to bait the hooks needed to get at least a few people to linger a bit longer by reading Helen's critical analysis.

Furthermore, unlike say the uncharitable interlocuter who flamed me in my earlier "Crash" post, I am not of the opinion that it is somehow illegitimate to reference older films. To the contrary, the longer texts have been in circulation, the more opportunity they are afforded to become iconic. Ideally one should also consider the fact that the representation of disability issues is so neglected by Hollywood that authors/activists have little alternative other than to reference a few "canonical" texts. Placed in a wider sociocultural context, it seems to me that the issues raised by Meekosha can only become more relevant and central to public consciousness with the passage of time. As far as films go, one need only consider how the X-Men series subsequently emerged as a prominent example of representation of these looming debates.

"Hollywood is continually pumping out movies saturated with images of disability. Sometimes these movies can tell us more about disability, difference and what it takes to be a good citizen than some might even want to know. In classic anthropological terms, movies have cultural functions, and movies about disability are more likely to be movies about normality and stability and the threat disability poses. Indeed, disability may be used as a metaphor for threats to the social order. A number of recent films allow us to examine the boundaries of disability representation in contemporary popular culture.

Some viewers see the latest Alien move "Alien Resurrection" (AR) as a full-on feminist thriller, replete with androids, clones and postmodern references. It hints at lesbian/queer sexualities. It contests the nature/culture divide, by gluing them together, and thereby demonstrates its postmodern feminist credentials. Yet AR can be read as rich in metaphors relevant to disability politics in the late twentieth century. It touches many of the key debates in which activists around the world are engaged.

Is there a "politically correct" representation of disability, given Hollywood's association of disability with "evil", "sinister", "tragic" and "instructive" narratives? Many active in disability politics yearn for more affirming "nice guy/gal" images, while others argue that the movies should reflect the full diversity of the disability experience. So how are we to react to the opening sequence of AR where Christy the tough smuggler is using Vriess's, his crippled comrade's, "dead" leg as a dart board for his knife? It depends, I would say, on who are the "we" who are watching.

The film operates at two different levels- one which can be read as working in the discourses of contemporary feminism, the other which appears unintended and speaks primarily to audiences of people with disabilities. First then, to examine the feminist/feminine world created by the director.

The Alien series, this one directed by Jean Pierre Jeunet, have pressed the boundaries of science fiction cinema, creating in the process a feminist action hero in the star Sigourney Weaver as Ripley. By AR, the fourth film in the series, Ripley who went molecular to destroy the Alien Queen in Alien 3, returns as a cloned "mother" to the incubus within. But with a spin, she is now a "supergirl", more powerful, speedy, acute, coordinated and generally aerobicised than any woman has the right to be. Which of course is the point- she is no longer "just a woman" but rather the mutated amalgam of her past and the Alien mother, created by scientists from surviving germ plasma. Where does she come from? Is she one of "us" or of "them"? Is this is a crisis of identity, where multiple pasts fuse in the present body but the projected future is problematic?

Ripley (her very name recalling the long running newspaper columns about the weird and wonderful ("Believe It or Not") is the archetypal woman in a man's world ,tougher, able to sustain herself against pain and suffering, uncomplaining. She embodies qualities of the essentialist female myth, with its roots in American frontier images of the pioneer woman, now updated with reference to those radical econfeminists who see women as a species different from men, inheritors of the power of the Goddess. Others see Ripley as representing part of the third/new wave feminist adventurer moving beyond conventional boundaries of feminist concern. She confronts the masculinist fantasy of the man eating vagina (vagina dentata) which is the Alien Queen.

Meanwhile moral majority America casts the film as an expression of a death dealing culture, which found original expression in the annihilation of the indigenous people, and now sustains its blood lust through massive foetus killing/abortion- under the influence of feminism. So feminists and anti-feminists can have their own textual analytial battles, but these are not, ultimately, the point. As with most mythical texts, the unintended consequences can be most revealing.

Some audiences are aware of the discourses of disability, and the interstices of cultural practices which sustain them. For these viewers, AR is saturated with strategic triggers which draw in the power relations of disability as these are are experienced in the wider world and daily life. Many of these triggers fire seriously disturbing and destructive judgements about the value of people with disabilites- of who has the moral right to survive in the third millenium? These judgements resonate with contemporary regimes of surveillance which locate people with disabilities within a range of power struggles- such as the Human Genome Project, "voluntary" euthanasia, pre natal testing and pre implantation testing ("monstous births"), the right to motherhood, rape, abortioon, infanticide of the disabled, the nurturer as killer, cultural hysteria about the public display of "deformed" bodies, the order of death and the differential value accorded disabled lives.

The Human Genome Project has been heralded as the saviour of humanity, by allowing science to "mend" or eliminate disabling genes, or indeed any genes linked to characteristics which are less than "perfect" in the hierarchy of normalcy. MIT geneticist Eric Lander, is quoted as saying that when the HGP finishes "it will be hard to explain to students how we did biology without the human genome".

However, for people with disabilities it carries with it threats of species-cide, the eradication of people like them from the planet. These are people with histories, cultures, languages, who have struggled to survive within the wide range of ways of being human. This range will gradually (or even rapidly) reduce, until all that is left is the small pool of acceptable genes. In the process the message to people with disabilites will be clear- your kind is not wanted here, and we (the normals) have every right to remove you: nay, not just the right, but the duty!

In the laboratories of the Company aboard the spaceship Auriga, Ripley has been rcreated from her own molecules, but perfected through genetic engineering- and we are asked to applaud her super human characteristics. On every dimension she has been "improved", as though with the biogenetic version of a flavour enhancer. But the subtext suggests that in the future "normals"may also become disabled people. In all the Alien movies, contact with the monster leads to one's own destruction as a result of "rape" and the implanting of Alien foetuses in the host. In Alien 3, Ripley was "raped" by the Alien and kills herself rather than give birth to the hideous monster. The differently bodied are presented as a constant sexual threat- in the movies as in life.

Pre natal testing is clearly linked to the applications planned for the Human Genome Project. Here concern is that prenatal testing is solely concerned with identifying "defective" foetuses. Horror fiction uses the idea of "monstrous births" as a device for representing the deformed and tortured soul of the being and to induce a fear of reproducing the abnormal. In AR the Alien Queen was to be prevented at all costs from giving birth to more monsters, who ate human flesh and destroyed the human community. When this attempt failed, the monstrous child was destroyed by Ripley who was both mother and her sibling.

One of the most confronting scenes for disabled people occurs in the same laboratory, where Ripley encounters her "failed" clones locked in the agony of the embodied mistakes of the scientists. The forms of failing which are embodied here are drawn from the ranks of the known universe of disability- "the deformed", "the spastic", "the disfigured", "the limbless". They cry out for her as a sister to end their pain by killing them. In tears,the nurturing mother kills her children/siblings with a flame thrower, becoming Dr Death (one of her male colleagues comments, that "It must be a chick thing").



These are precisely the scenarios which are used to justify the demand for "voluntary" euthanasia- where the reality behind the public debate which focuses on those with terminal illnesses is that many people with disabilities are deemed to have lives inherently worthless. Research in the USA suggests that in those states where the "death option" is mobilised, there are relatively few support services or structurs available to make life "worth living". Yet the irony persists that this scene can be read by some non disabled feminists as an assertion of the right of women to keep control over their reproductive processes, because the cloning was directed by male scientists wose presence represented patriarchy.

There are other references to disability in the movie- most obviously when the going gets tough and the smugglers suggest that they abandon the cripple- a decision not well received by Vriess. Hollywood then proceeds to conform to ultra PC and the Black smuggler saves his friend by sacrificing himself.Vriess survives, a smart and independent sort of guy. Perhaps we should acknowledge that the struggle of the movement against stereotypes in the movies has had an impact.

"I see disabled people's re-valuing of their own bodies and ways of living and the forms of culture that are emerging fro disability pride, as oppositional discourses and practices. They do weaken the internal hold of the disciplines of normality over those who have disabilites" (Wendell 1996: 92).

In the final scenes we discover the good citizen is actually an android, Call, who has fallen in love with Ripley, leaving us to question the future of human bodies, disabled or not.

It is not just in the future cyberworld of the Alien mythology that identity has become more problematically associated with corporeality- we see it too in contemporary contexts: black bodies, gay bodies, transsexaul, transgender bodies, ill bodies and disabled bodies. Corporeal identity thus carries social and personal meaning in a world of uncertainty and flux. Classificatory systems have been used over time to demarcate bodies- determining who consitutes insiders and constitutes outsiders. But are cyborgs really the vision of the future that would transcend the limits of "normalcy" and allow those with disabled bodies to be seen as part of the range of beings which inhabit societies? Perhaps not. We can now see bodies being used and produced for different forms of cultural and capital accumulation. "We are not seeing the end of the body, but the end of one kind of body and the beginnng of another kind of body" (Martin 1997: 544).

While AR offers its texts to the disability aware in layered and unselfconscious format, Gattaca, directed by Andrew Nicol, could be seen as a film which confronts disability more directly- through the theme again of genetic engineering. We are introduced to a world "in the not too distant future" though many of the practices of genetic screening for employment are widespread already.

The hero, Vincent, who is naturally born, but is projected to live only thirty years due to his imperfections, aspires to become an astronaut, a role only available to the genetically perfect. Human bodily perfection is prized, anything less is "In-Valid" or "De-gene-rate", and disabled bodies are criminalised and sent off to work in low skill, low status jobs. While anti discrimination laws exist, our hero, an In-Valid, remarks that "we now have discriminatin down to a science". It is a world where the Human Genome Project has been realised- indeed Gattaca (GAT ATT TTA TAC ACA- linking amino acids adenine [a], thymine , guanne, , and cytosine is the combination of "overlapping triplets" that mark the basic patterns of DNA>. It is a world where the HGP has realised its dream, and all genetic material is manipulable and controllable. The film was to end with a contemporary documentary line in which the audience were informed that "of course, the other birth that may never have taken place is your own". While this was positively endorsed by advisory geneticists, test lay audiences rejected the line, seeing it as a suggesting they may have genetic defects.

Movies with disabled characters are now beginning to reflect the influence of the disability movement on popular culture. So we can see in Spanish director Pedro Almodovar's "Carne Tremula" (Live Flesh) the hero David (played by Javier Bardem) who is a cop, disabled by a bullet to the spine, whose wife, Elena, begins an affair with his attacker, Victor. David is constructed as the Olympian wheelchair riding, basketball playing supercrip, yet despite the apparent "normality" of his diabled state and thus the film's apparent acceptance of the disabilty presence, it also becomes a metaphor for castration- and thus provides an "explanation" for Elena's affair with the fully potent "able bodied" Victor.

A recent Hollywood engagement with the world of disability through a comic frame occurs in the Farrelly Brothers' film, "There's Something About Mary", starring Cameron Diaz in the lead role, Ben Stiller as her teen sweetheart Ted, and Matt Dillon as her admirer and film villain Healy. The movie's web page, describing her character, notes, "though a little older now, Mary is even more beautiful than Ted recalls, with a successful medical career and a soft spot for the handicapped. However, Healy informs Ted, in his efforts to keep Mary for himself, that she has become a mail order bride, overweight, wheelchair bound mother of four kids out of wedlock".

The film itself is rather more open and everyday about disability than the publicists appear able to reflect in their web promotions, and neither stereotyping nor offensive (even if at times over the top). The cast includes strong performances by disabled actor W.Earl Browne as Mary's disabled brother Warren, accompanied by a group of his collegues from a day centre who find themselves in an impossible football game with the villain Healy. Indeed the key plot point revolves around the realtionship between Mary and Warren, and her commitment to him- she will only have as a lover a man who can relate to Warren as a human being.

The Disability Movement in Australia is beginning to realise the crucial role that popular cultural representation of disability plays in the opportunities for people with disabilities. With some few exceptions, the public sphere is saturated with discourses which use disabled people as metaphors for horror, evil, fear, and distress. These films are rarely reviewed in terms of the disability implications, unless they specifically "deal with" disability issues- as in Rolf de Heer's Cannes competition entry "Dance Me to My Song", which starred a disabled actor, Heather Rose.

Diability politics is in ferment, as governments roll back the gains of the movement in the name of rejecting political correctness. Popular representation of disability in its complexity plays an important part in political discourses. In Australia, at precisely the time when human rights and advocacy groups are having their funding cut, issues of biogenetics/reprogenetics, and the place of disabled people as sexual and socal subjects, present themselves as crucial questions for disability communities and individuals. The "not too distant future" has arrived".

Saturday, 5 July 2008

"Ableism" & synthetic biology

Please see the message from Gregor Wolbring below, which is about participating in a survey that his students have designed concerning attitudes towards synthetic biology. I would like to recommend this to you, and to distribute widely. Wolbring is perhaps the leading theoriest of 'able-ism', which says we are heading into a world in which we are always already disabled. It is one of the more sobering versions of transhumanism currently on the market.
"I am the convener of a team of four undergraduate students (all in thebachelor of health sciences in my faculty, three finished the firstyear, one finished the second year) who will compete at theInternational Genetically Engineered Machine Competition iGEM"The International Genetically Engineered Machine Competition is thepremiere Synthetic Biology competition and currently the largestSynthetic Biology conference in the world. Working at their own schoolsover the summer, participants use standard biological parts to design,build, and operate biological systems in living cells. During the firstweekend of November, they share their work at the iGEM Competition Jamboree at MIT and in competition for a variety of awards forexcellence. They add their new parts to the Registry of StandardBiological Parts for the students in the next year's competition."
The Calgary IGEM Ethics team is the first undergraduate team allowed to look into the ethical, legal, social.. issues of synthetic biology. The students developed this survey and plan to use this survey as one output for its Nov presentation.I sent you this email as you are linked to various networks and I hope that you send this email through your networks so that the students get many responses to the survey they designed.You can find the survey here
I hope that the students receive many responses. They worked very hard on the survey.
Thanks again for your help.
Cheers
Gregor--
Dr. Gregor Wolbring
Assistant Professor
University of Calgary webpage: http://www.bioethicsanddisability.org/
Nano Bio Info Cogno Synbio Blog:http://wolbring.wordpress.com/
What Sorts of People blog: http://whatsortsofpeople.wordpress.com/