Hostname: page-component-7c8c6479df-p566r Total loading time: 0 Render date: 2024-03-28T11:11:43.032Z Has data issue: false hasContentIssue false

The Cerebral Subject and the Challenge of Neurodiversity

Published online by Cambridge University Press:  22 December 2009

Francisco Ortega
Affiliation:
Institute for Social Medicine, State University of Rio de Janeiro, Rua São Francisco Xavier 524, Rio de Janeiro CEP 20550-900, Brazil E-mail: fjortega2@gmail.com
Get access

Abstract

The neurodiversity movement has so far been dominated by autistic people who believe their condition is not a disease to be treated and, if possible, cured, but rather a human specificity (like sex or race) that must be equally respected. Autistic self-advocates largely oppose groups of parents of autistic children and professionals searching for a cure for autism. This article discusses the positions of the pro-cure and anti-cure groups. It also addresses the emergence of autistic cultures and various issues concerning autistic identities. It shows how identity issues are frequently linked to a ‘neurological self-awareness’ and a rejection of psychological interpretations. It argues that the preference for cerebral explanations cannot be reduced to an aversion to psychoanalysis or psychological culture. Instead, such preference must be understood within the context of the diffusion of neuroscientific claims beyond the laboratory and their penetration in different domains of life in contemporary biomedicalized societies. Within this framework, neuroscientific theories, practices, technologies and therapies are influencing the ways we think about ourselves and relate to others, favoring forms of neurological or cerebral subjectivation. The article shows how neuroscientific claims are taken up in the formation of identities, as well as social and community networks.

Type
Articles
Copyright
Copyright © London School of Economics and Political Science 2009

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abi-Rached, J.M. (2008a). The new brain sciences: Field or fields? Brain, Self and Society Paper No. 2, BIOS (Centre for the Study of Bioscience, Biomedicine, Biotechnology and Society), London School of Economics. URL (accessed August 2009): http://www.lse.ac.uk/collections/brainSelfSociety/publications.htmGoogle Scholar
Abi-Rached, J.M. (2008b). The implications of the new brain sciences. EMBO Reports, 912, 11581162.Google Scholar
Antonetta, S. (2005). A mind apart: Travels in a neurodiverse world. London: Penguin.Google Scholar
Ariel, C.N., & Naseef, R.A. (Eds) (2006). Voices from the spectrum: Parents, grandparents, siblings, people with autism, and professionals share their wisdom. London and Philadelphia: Jessica Kingsley.Google Scholar
Bagatell, N. (2007). Orchestrating voices: Autism, identity and the power of discourse. Disability & Society, 22, 413426.CrossRefGoogle Scholar
Baron-Cohen, S. (2002). The extreme male brain theory of autism. TRENDS in Cognitive Sciences, 6, 248254.Google Scholar
Biever, C. (2007). Let's meet tomorrow in Second Life. NewScientist, 2610, 2627.Google Scholar
Blume, H. (1997a). Autism and the internet, or, It's the wiring, stupid. URL (accessed June 2007): http://web.mit.edu/comm-forum/papers/blume.htmlGoogle Scholar
Blume, H. (1997b). Autistics, freed from face-to-face encounters, are communicating in cyberspace. New York Times 30 June. URL (accessed December 2008): http://www.nytimes.com/1997/06/30/business/autistics-freed-from-face-to-face-encounters-are-communicating-in-cyberspace.htmlGoogle Scholar
Brownlow, C.L. (2007). The construction of the autistic individual: Investigations in online discussion groups. PhD thesis, University of Brighton.Google Scholar
Brownlow, C., & O’Dell, L. (2006). Constructing an autistic identity: AS voices online. Mental Retardation, 44, 315321.Google Scholar
Bumiller, K. (2008). Quirky citizens: Autism, gender, and reimagining disability. Signs: Journal of Women in Culture & Society, 33, 967991.Google Scholar
Chamak, B. (2008). Autism and social movements: French parents’ associations and international autistic individuals’ organizations. Sociology of Health & Illness, 30, 7696.Google Scholar
Chamak, B., Bonniaua, B., Jaunay, E., & Cohen, D. (2008). What can we learn about autism from autistic persons? Psychotherapy and Psychosomatics, 77, 271279.Google Scholar
Charlton, J. (2000). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press.Google Scholar
Cheu, J. (2004). De-gene-erates, replicants and other aliens: (Re)defining disability in futuristic film. In Corker, M., & Shakespeare, T. (Eds), Disability/postmodernity: Embodying disability theory, 198–212. London: Continuum.Google Scholar
Churchland, P. (1981). Eliminative materialism and the propositional attitudes. Journal of Philosophy, 78(2), 6790.Google Scholar
Clarke, J., & van Amerom, G. (2007). ‘Surplus suffering’: Differences between organizational understandings of Asperger's syndrome and those people who claim the ‘disorder’. Disability & Society, 22, 761776.Google Scholar
Clarke, J., & van Amerom, G. (2008). Asperger's Syndrome: Differences between parents’ understanding and those diagnosed. Social Work in Health Care, 46(3), 85106.Google Scholar
Corker, M. (1999). New disability discourse, the principle of optimization and social change. In Corker, M., & French, S. (Eds), Disability discourse, 192–209. Buckingham: Open UP.Google Scholar
Corker, M., & French, S. (Eds) (1999). Disability discourse. Buckingham, Philadelphia: Open UP.Google Scholar
Corker, M., & Shakespeare, T. (Eds) (2004). Disability/postmodernity: Embodying disability theory. London, New York: Continuum.Google Scholar
Davidson, J. (2007) ‘In a world of her own …’: Re-presenting alienation and emotion in the lives and writings of women with autism. Gender, Place and Culture, 14, 659677.Google Scholar
Davidson, J. (2008). Autistic culture online: Virtual communication and cultural expression on the spectrum. Social & Cultural Geography, 9(7), 791806.Google Scholar
Davis, L.J. (1995). Enforcing normalcy: Disability, deafness and the body. London: Verso.Google Scholar
Davis, L.J. (2002). Bending over backwards: Disability, dismodernism, and other difficult positions. New York: New York UP.Google Scholar
Dawson, M. (2004). The misbehavior of behaviorists: Ethical challenges to the autism-ABA industry. URL (accessed June 2007): http://web.archive.org/web/20051205014407/www.sentex.net/~nexus23/naa_aba.htmlGoogle Scholar
Dekker, M. (2006). On our own terms: Emerging autistic culture. URL (accessed December 2007): http://autisticculture.com/index.php?page=articlesGoogle Scholar
Dumit, J. (2003). Is it me or my brain? Depression and neuroscientific facts. Journal of Medical Humanities, 24, 3548.Google Scholar
Dumit, J. (2004). Picturing personhood: Brain scans and biomedical identity. Princeton, NJ: Princeton UP.Google Scholar
Ehrenberg, A. (2004). Le Sujet cerebral. Esprit, 309, 130155.Google Scholar
Feinberg, E., & Vacca, J. (2000). The drama and trauma of creating policies on autism: Critical issues to consider in the new millennium. Focus on Autism and other Developmental Disabilities, 15(3), 130137.Google Scholar
Fombonne, E. (2003). Modern views on autism. Canadian Journal of Psychiatry, 48(8), 503506.Google Scholar
Foucault, M. (1988). Technologies of the self. In Martin, L.H., Gutman, H., & Hutton, P.H. (Eds), Technologies of the self, 16–49. Amherst: University of Massachusetts Press.Google Scholar
Freeman, B.J., & Cronin, P. (2002). Diagnosing autism spectrum disorder in young children: An update. Infants and Young Children, 14(3), 110.Google Scholar
Gibbon, S., & Novas, C. (2008). Introduction: Biosocialities, genetics and the social sciences. In Gibbon, S., & Novas, C. (Eds), Biosocialities, Genetics and the Social Sciences, 1–18. London: Routledge.Google Scholar
Goggin, G., & Newell, C. (2003). Digital disability: The social construction of disability in new media. Lanham, MD: Rowman & Littlefield.Google Scholar
Goggin, G., & Noonan, T. (2006). Blogging disability: The interface between new cultural movements and internet technology. In Bruns, A., & Jacobs, J. (Ed.), Uses of blogs, 161–172. New York: Peter Lang.Google Scholar
Grandin, T. (1995). Thinking in pictures: And other reports from my life with autism. New York: Vintage Books.Google Scholar
Hacking, I. (1995). The looping effects of human kinds. In Sperber, D., Premack, D., & James-Premack, A. (Eds), Causal cognition: A multidisciplinary approach, 351–383. Oxford: Clarendon Press.Google Scholar
Hacking, I. (2002). Making up people. Historical Ontology, 99–114. Cambridge, MA: Harvard UP.Google Scholar
Hacking, I. (2006). What is Tom saying to Maureen? London Review of Books, 28(9). URL (accessed May 2007): http://www.lrb.co.uk/v28/n09/hack01_.htmlGoogle Scholar
Hacking, I. (2009). Autistic autobiography. Philosophical Transactions of the Royal Society, B, 364, 14671473.Google Scholar
Harmon, A. (2004a). Adults and autism: An answer, but not a cure, for a social disorder. New York Times, 29 April.Google Scholar
Harmon, A. (2004b). Neurodiversity forever: The disability movement turns to brains. New York Times, 9 May.Google Scholar
Harmon, A. (2004c). How about not ‘curing’ us, some autistics are pleading. New York Times, 20 December.Google Scholar
Jones, R., & Meldal, T.O. (2001). Social relationships and Asperger's syndrome: A qualitative analysis of first-hand accounts. Journal of Intellectual Disabilities, 5, 3541.Google Scholar
Jones, R.S.P., Zahl, A., & Huws, J.C., (2001). First-hand accounts of emotional experiences in autism: A qualitative analysis. Disability & Society, 16, 393401.Google Scholar
Jurecic, A. (2007). Neurodiversity. College English, 69, 421442.Google Scholar
Kenway, I.M. (2009). Blessing or curse? Autism and the rise of the internet. Journal of Religion, Disability & Health, 13, 94103.Google Scholar
Kirmayer, L.J. (1988). Mind and body as metaphors: Hidden values in biomedicine. In Lock, M. and Gordon, D.R. (Eds), Biomedicine examined, 5793. Dordrecht: Kluwer Academic Publishers.CrossRefGoogle Scholar
Lage, A. (2006). Autistas usam remédios para controlar aspectos da doença. Folha OnLine, 27 July. URL (accessed December 2007): http://www1.folha.uol.com.br/folha/equilibrio/noticias/ult263u4160.shtmlGoogle Scholar
Luhrmann, T.M. (2000). Of two minds: The growing disorder in American psychiatry. New York: Alfred A. Knopf.Google Scholar
Martin, E. (2000). Mind–body problems. American Ethnologist, 27, 569590.Google Scholar
Martin, E. (2007). Bipolar expeditions: Mania and depression in American culture. Princeton, NJ: Princeton UP.Google Scholar
Martin, E. (2009). Identity, identification, and the brain. Presented at the workshop ‘Neurocultures’, Max Planck Institute of the History of Science, Berlin, 20–22 February.Google Scholar
Merzenich, M.M., & Jenkins, W.M. (1994), Cortical representations of learned behaviors. In Andersen, P., Hvalby, O., Paulsen, O., & Hokfelt, B. (Eds), Memory concepts, 437454. New York: Elsevier.Google Scholar
Metzinger, T. (2009). The ego tunnel: The science of the mind and the myth of the self. New York: Perseus Book Group.Google Scholar
Meyerding, J. (1998). Thoughts on finding myself differently brained. URL (accessed July 2009): http://mjane.zolaweb.com/diff.htmlGoogle Scholar
Meyerding, J. (2003). The great ‘why label?’ debate. URL (accessed July 2009): http://mjane.zolaweb.com/label.htmlGoogle Scholar
Miller, D., & Slater, D. (2000). The internet: An ethnographic approach. Oxford: Berg.Google Scholar
Nadesan, M.H. (2005) Constructing autism: Unravelling the ‘truth’ and understanding the social. London and New York: Routledge.Google Scholar
Nelson, A. (2004). Declaration from the autism community that they are a minority group. URL (accessed August 2008): http://www.prweb.com/releases/2004/11/prweb179444.htmGoogle Scholar
Newschaffer, C.J., & Curran, L.K. (2003). Autism: An emerging public health problem. Public Health Reports, 118(5), 393399.CrossRefGoogle ScholarPubMed
Ortega, F. (forthcoming). Toward a genealogy of neuroascesis. In Ortega, F., & Vidal, F.. Neurocultures. Glimpses into an Expanding Universe. Frankfurt and New York: Peter Lang.Google Scholar
Ortega, F., & Vidal, F. (2007). Mapping the cerebral subject in contemporary culture. RECIIS—Electronic Journal of Communication Information & Innovation in Health, 2, 255259.Google Scholar
Osteen, M. (Ed.) (2008). Autism and representation. New York: Routledge.Google Scholar
Padden, C., & Humphries, T. (2006). Inside deaf culture. Cambridge, MA: Harvard UP.Google Scholar
Rabinow, P. (1992). Artificiality and enlightenment: From sociobiology to biosociality. In Crary, J., & Kwinter, S. (Eds), Incorporations, 234252. New York: Zone Books.Google Scholar
Rees, D., & Rose, S. (Eds) (2004). The new brain sciences: Perils and prospects. Cambridge: Cambridge UP.Google Scholar
Rodriguez, P. (2006). Talking brains: A cognitive semantic analysis of an emerging folk neuropsychology. Public Understanding of Science, 15, 301330.Google Scholar
Rose, N. (2007). The politics of life itself: Biomedicine, power, and subjectivity in the twenty-first century. Princeton, NJ: Princeton UP.Google Scholar
Rosenberg, C.E. (2006). Contested boundaries: Psychiatry, disease, and diagnosis. Perspectives in Biology and Medicine, 49, 407424.Google Scholar
Rubin, S. (2005). Acceptance versus cure. CNN.com. URL (accessed September 2009): http://www.cnn.com/CNN/Programs/presents/shows/autism.world/notebooks/sue/notebook.htmlGoogle Scholar
Shapiro, J. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Random House.Google Scholar
Shapiro, J. (2006). Autism movement seeks acceptance, not cures. URL (accessed December 2007): http://www.npr.org/templates/story/story.php?storyId=5488463Google Scholar
Silberman, S. (2001). The Geek syndrome. Wired, 9(12). URL (accessed December 2007): http://www.wired.com/wired/archive/9.12/aspergers.htmlGoogle Scholar
Silverman, C. (2008a). Brains, pedigrees and promises: Lessons from the politics of autism genetics. In Gibbon, S., & Novas, C. (Eds), Biosocialities, genetics and the social sciences: Making biologies and identities, 38–55. London: Routledge.Google Scholar
Silverman, C. (2008b). Fieldwork on another planet: Social science perspectives on the autism spectrum. BioSocieties, 3, 325341.Google Scholar
Sinclair, J. (1993). Don’t mourn for us. Voice, 1(3). URL (accessed December 2007): http://ani.autistics.org/dont_mourn.htlmGoogle Scholar
Sinclair, J. (1999). Why I dislike ‘person first’ language. URL (accessed January 2009): http://web.syr.edu/~jisincla/person_first.htmGoogle Scholar
Sinclair, J. (2005). Autism network international: The development of a community and its culture. URL (accessed December 2007): http://web.syr.edu/~jisincla/History_of_ANI.htmlGoogle Scholar
Singer, J. (1999). Why can’t you be normal for once in your life? From a ‘problem with no name’ to the emergence of a new category of difference. In Corker, M., & French, S. (Eds), Disability discourse, 5967. Buckingham: Open UP.Google Scholar
Singer, J. (2007). Light and dark: Correcting the balance. URL (accessed June 2008): http://www.neurodiversity.com.auGoogle Scholar
Solomon, A. (2008). The Autism Rights Movement. New York Magazine, 25 May. URL (accessed August 2009): http://nymag.com/news/features/47225Google Scholar
Swain, J., & Cameron, C. (1999). Unless otherwise stated: Discourses of labeling and identity in coming out. In Corker, M., & French, S. (Eds), Disability discourse, 6878. Buckingham: Open UP.Google Scholar
Valenstein, E.S. (1998). Blaming the brain: The truth about drugs and mental health. New York: The Free Press.Google Scholar
Valentine, G., Skelton, T., & Butler, R. (2003). Coming out and outcomes: Negotiating lesbian and gay identities with, and in, the family. Environment and Planning D: Society and Space, 21, 479499.Google Scholar
Vidal, F. (2009). Brainhood, anthropological figure of modernity. History of the Human Sciences, 22, 536.Google Scholar
Vrecko, S. (2006). Folk neurology and the remaking of identity. Molecular Interventions, 6, 300303.Google Scholar
Waltz, M. (2005). Reading case studies of people with autistic spectrum disorders: A cultural studies approach to issues of disability representation. Disability & Society, 20, 421435.Google Scholar
Wickelgren, I. (2005). Autistic brains out of synch? Science, 308, 18561858.Google Scholar
Wilson, S., & Peterson, L. (2002). The anthropology of online communities. Annual Review of Anthropology, 31, 449467.Google Scholar
Wing, L. (1997). The history of ideas on autism: Legends, myths and reality. Autism, 1, 1323.CrossRefGoogle Scholar