Sarah Pett

Early Career Researcher and Teacher (SOAS)

Conference review: Autism, ethics and the good life

Organised by the Centre of Medical Law and Ethics, Kings College London, in conjunction with the British Academy, 2 April 2012 (World Autism Day).

Billed as an interdisciplinary event bringing together a range of academics, activists, and people with autism and their families to discuss one of the most slippery issues out there, this conference promised a lot. Having battled serious jet lag to get there on time, I’m particularly pleased to say that it didn’t just meet my expectations, but significantly surpassed them. While I am a staunch supporter of interdisciplinary dialogue, my previous experience of attempts to achieve this among top researchers (rather than PGRs) has been sorely disappointing. To attempt this while also engaging with the public might at first seem overly ambitious, but recently I’ve been thinking that in many ways this is the most sensible approach to take: to most extents and purposes, different disciplines are as alien to many researchers as they are to the so-called “public”. If you ask me, this conference provided strong evidence in support of just such an approach. The various presentations were without exception perfectly pitched, and the elimination of jargon and distillation of dense issues that this required allowed areas of shared concern to come to–and stay at–the fore.

Mind you, the event’s focus on “the good life” might also go some way toward explaining this, for it is surely one of the unifying goals of academic research. It seems to me that an understanding of and endeavour towards the good life drives a large proportion of research, of both the “blue skies” and the applied variety. First, autonomous, curiosity-led inquiry is seen as an integral characteristic of “the human”. It’s not for nothing that we venerate figures like Benjamin Franklin, whose face adorns the $100 bill (an iconic symbol of the good life, as Puff Daddy reminds us in “It’s all about the benjamins”). On a more prosaic level, though, just think about some of the things we eat, and then about how we figured out we could eat them. Oh sure, raw fruit and vegetables, pretty straightforward. But what about, say, bread? How did THAT happen? Instead of just eating the wheat then and there, someone (well, probably several people over a period of time) dried it, ground it up, mixed it with some water, let it ferment, KNEADED IT, let it rise, and then put it in the oven/fire. You’ve got to admit that, at the time, that must have sounded pretty crazy, not to mention speculative in the extreme.

I digress. Returning to the point in hand then: applied research is almost always tied–often in material terms–to a notion of the good life, and typically to a particular social/cultural/economic group’s notion of the good life rather than the good life in general. At the nobler end of the spectrum, research into developing an effective HIV vaccine that would prevent infection quite clearly ties in with the notion of the good life as involving good health and wellbeing (this is not, however, quite so straightforward, as I’ll discuss in more detail later on). In regions with a high incidence of HIV and AIDS, such an intervention would also ease some of the social and economic obstacles to the good life that arise from HIV infection, including high numbers of orphans and sexual violence (not just a cause of HIV, but also an effect – in South Africa, for example, there is in circulation a myth that sex with a virgin can ‘cure’ HIV/AIDS, leading to the rape of young women, children, and the disabled). Other, perhaps less noble examples might involve advancing mobile phone technology, which might contribute to one version of the good life while significantly limiting others (such as those who mine coltan in the DRC or man factories in China). I’m aware I’ve grossly oversimplified here, but just to give you the general idea…

So, back to the conference. The day began with an excellent presentation by Professor Francesca Happé (KCL), who provided an overview of the neuroscience behind autism spectrum conditions. This was followed by Dr Tim Cadman (also KCL), who took us through the salient ethical, social, and philosophical issues surrounding autism. This opening session really set the scene for the rest of the day, and provided a thorough introduction for those who, like myself, are not up to date on either the science or the sociology of autism.

I was particularly pleased to see Professor Stuart Murray (Leeds) on the programme, whose work I have followed with great interest over the past years. Coming from a literary and cultural studies background, Stuart has been instrumental in the development of the medical humanities in the UK, as demonstrated by the recent creation of the Leeds Centre for Medical Humanities. His presentation focused on unpacking the logic surrounding the design and performance of autism, with particular emphasis on the cultural history implicit in the metaphors (both visual and verbal) used to describe it. Through this, he challenged the ‘deficit model’ of autism put forward in medical literature such as the Diagnostic and Statistical Manual of Mental Disorders. He also drew attention to the way in which autism is pathologised in a way that other forms of suffering–such as poverty–are not (although I’m not entirely sure this is something I agree with).

This panel stood out for its involvement of autism advocates Sandy Starr, K Leneh Buckle (KCL), and Virginia Bovell (Oxford), all of whom questioned the assumptions underpinning the normative–or, in the case of autism, neurotypical–conception of the good life. While Sandy Starr called for an understanding of autism as an identity, with its own politics, both Leneh Buckle and Virginia Bovell emphasised the need to tailor ideas of the good life to account for the needs, wishes, and abilities of individuals, particularly in the case of so called ‘low-functioning’ people with autism.

Drawing on her personal experience of raising a daughter with severe intellectual disability, Eva Feder Kittay‘s discussion of cognitive disability from a moral philosophy perspective took up this last theme. Distinguished Professor of Philosophy at Stony Brook University (SUNY), Kittay questioned whether quality of life necessarily depends on the ability to achieve intellectually. In a presentation that took us from Socrates to Martha Nussbaum, Kittay critiqued the ‘stifling’ nature of dominant cognitive norms, before sketching some ways in which, by making these norms more capacious, the notion of the good life can become more accommodating. Crucially, she drew attention to the essential role that access to resources and support for both individuals with cognitive disabilities, their families and carers play in working towards this. While this presentation was complimented well by that of Professor Richard Ashcroft (QMUL) and Dr Jackie Leach Scully (Newcastle), due to timetabling issues the talk that followed–Dr Liz Pellicano‘s (London) engaging discussion of educational interventions in childhood–appeared somewhat misplaced. A better pairing might have been with Saskia Baron’s presentation, which centred on autism and ageing. Baron’s documentary, The Autism Puzzle, broke new ground when it first appeared in 2002, and continues to be an essential tool in educating the public about autism. Likewise, her theme at this event shed light on yet another area neglected by research into and thinking about autism: how ageing affects autism, and vice versa.

The conference concluded with an overview of genetic counselling and autism provided by Professor Mike Parker (Oxford) – again, a presentation that might have benefited from different scheduling, as it seemed to fit best the opening panel. I have to admit, by this stage I was seriously flagging, and might not do the closing presentation and discussion justice. It might be safer to stick to general comments in this final section! As I said at the beginning of this review, the conference really excelled at bringing together a diverse group of presenters and participants, and the contributions of those with autism were particularly informative and appreciated. Although a range of perspectives emerged over the course of the day, the continuities were sufficient to create a coherent and memorable event. My only real criticism would be about scheduling: not so much panel organisation, as I’m aware that this is an extremely difficult thing to do with so many high profile speakers, but more about the time set aside for discussion, which was disappointing insufficient. The day was very presentation-heavy, with a two hour session including only twenty minutes for discussion. It might have been better to have had one less presenter, and an longer discussion session with which to conclude the event. Of course, there was a wine reception, but that’s not quite the same thing now is it….

In conclusion, the three things that excited me most about the event were:

1) the way in which it provided a workable template for interdisciplinary knowledge exchange in general, and particularly for the field of medical humanities as a whole,

2) its implications for new ways of thinking about not only autism, but also intellectual/cognitive disability more widely, and perhaps even physical disability as well, and

3) the new perspectives and resources it provided for thinking about my own research on suffering, narrative, and ethics in literary fiction

Thanks again to the British Academy for providing a fantastic, and FREE, day – I look forward to seeing how the ideas it generated develop.

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One comment on “Conference review: Autism, ethics and the good life

  1. Gale Mayo
    February 1, 2013

    Like “vaccines,” “cure” is one of those topics that come up in relation to autism, but that shift the focus too much away from helping autistic children and adults here, today, and now. Crusading against autism has a grandiloquent sound, but what I’m in search of is so much mundane reality. A job, a place to call home, other needs—of food, clothing, drink—all met at least adequately and, preferably, very well—these are real things that real individuals will need. Rather than mourning that a child did not get started in Early Intervention “early enough” (a point that Wright raises regarding his grandson in his TreeHouse Lecture ), what about starting wherever a child is at and building an individualized education and individualized services—building a good life—around them?

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This entry was posted on April 3, 2012 by in Uncategorized.

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