Нейрологические идентичности и движение за нейроразнообразие
DOI:
https://doi.org/10.22394/2074-0492-2020-2-125-156Ключевые слова:
политика идентичности, нейроразнообразие, аутизм, аутистические культуры, церебральный субъектАннотация
В движении за нейроразнообразие доминируют аутичные люди, отстаивающие точку зрения, что их состояние - не болезнь, которую необходимо лечить и, если это возможно, вылечить, а отличительная черта, такая как пол или раса, требующая соответствующего отношения. Существует крайне мало исследований, направленных на изучение роли нейронаук и церебрализации аутистической культуры в продвижении и утверждении идей нейроразнообразия. Данная статья представляет собой вклад в заполнение этой лакуны. В ней исследуется роль нейронаук и понятия мозга в программе формирования идентичности, что хорошо видно на примере возникновения движения за нейроразнообразие. Локомотивом этого движения выступают так называемые высокофункциональные аутичные личности, доказывающие, что аутизм - это не болезнь, а одна из форм человеческих различий. В статье рассматривается развитие аутичных личностей и способов их общения, а также социальных сетей и групп. Она рассматривает возникновение аутистической культуры и проблемные зоны, связанные с аутичной идентичностью. Показано, что формирование их идентичностей связано с церебрализацией соответствующих состояний. Чтобы позитивно изображать аутизм, привлекаются данные о мозге. Движение в направлении нейронаук нужно понимать в более широком контексте, когда терминология, связанная с головным мозгом, распространяется за пределы лабораторий и проникает в разные сферы современных обществ. Эта лексика подхватывается индивидами и группами для того, чтобы говорить о себе и своих отношениях с другими, а также заявлять о своей идентичности и бороться за свои права.Скачивания
Библиографические ссылки
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.
Abi-Rached J.M. (2008b) The implications of the new brain sciences. EMBO Reports, 912:1158-1162.
Antonetta S. (2005) A mind apart: Travels in a neurodiverse world, London: Penguin.
Ariel C.N., Naseef R.A. (eds) (2006) Voices from the spectrum: Parents, grandparents, siblings, people with autism, and professionals share their wisdom, London; Philadelphia: Jessica Kingsley.
Bagatell N. (2007) Orchestrating voices: Autism, identity and the power of discourse. Disability & Society, 22: 413-426.
Baron-Cohen S. (2002) The extreme male brain theory of autism. TRENDS in Cognitive Sciences, 6: 248-254.
Biever C. (2007) Let's meet tomorrow in Second Life. New Scientist, 2610: 26-27.
Blume H. (1997a) Autism and the internet, or, It's the wiring, stupid. (http://web.mit.edu/ comm-forum/legacy/papers/blume.html)
Blume H. (1997b) Autistics, freed from face-to-face encounters, are communicating in cyberspace. New York Times, 30 June. (https://www.nytimes.com/1997/06/30/ business/autistics-freed-from-face-to-face-encounters-are-communicating-in-cyberspace.html)
Brownlow C.L. (2007) The construction of the autistic individual: Investigations in online discussion groups. PhD thesis, University of Brighton.
Brownlow C., O'Dell L. (2006) Constructing an autistic identity: AS voices online. Mental Retardation, 44: 315-321.
Bumiller K. (2008) Quirky citizens: Autism, gender, and reimagining disability. Signs: Journal of Women in Culture & Society, 33: 967-991.
Chamak B. (2008) Autism and social movements: French parents' associations and international autistic individuals' organizations. Sociology of Health & Illness, 30: 76-96.
Chamak B., Bonniaua B., Jaunay E., Cohen D. (2008) What can we learn about autism from autistic persons? Psychotherapy and Psychosomatics, 77: 271-279.
Charlton J. (2000) Nothing about us without us: Disability oppression and empowerment, Berkeley: University of California Press.
Cheu J. (2004) De-gene-erates, replicants and other aliens: (Re)defining disability in futuristic film. M. Corker, T. Shakespeare (eds) Disability/postmodernity: Embodying disability theory, London: Continuum: 198-212.
Churchland P. (1981) Eliminative materialism and the propositional attitudes. Journal of Philosophy, 78 (2): 67-90.
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: 761-776.
Clarke J., van Amerom G. (2008) Asperger's Syndrome: Differences between parents' understanding and those diagnosed. Social Work in Health Care, 46 (3): 85-106.
Corker M. (1999) New disability discourse, the principle of optimization and social change. M. Corker, S. French (eds) Disability discourse, Buckingham: Open UP: 192-209.
Corker M., French S. (eds) (1999) Disability discourse, Buckingham, Philadelphia: Open UP.
Corker M., Shakespeare T. (eds) (2004) Disability/postmodernity: Embodying disability theory, London; New York: Continuum.
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: 659-677.
Davidson J. (2008) Autistic culture online: Virtual communication and cultural expression on the spectrum. Social & Cultural Geography, 9 (7): 791-806.
Davis L.J. (1995) Enforcing normalcy: Disability, deafness and the body, London: Verso.
Davis L.J. (2002) Bending over backwards: Disability, dismodernism, and other difficult positions, New York: New York UP.
Dawson M. (2004) The misbehavior of behaviorists: Ethical challenges to the autism-ABA industry. (https://www.sentex.ca/~nexus23/naa_aba.html)
Dekker M. (2006) On our own terms: Emerging autistic culture. (http://www.autscape. org/2015/programme/handouts/Autistic-Culture-07-Oct-1999.pdf)
Dumit J. (2003) Is it me or my brain? Depression and neuroscientific facts. Journal of Medical Humanities, 24: 35-48.
Dumit J. (2004) Picturing personhood: Brain scans and biomedical identity, Princeton, NJ: Princeton UP.
Ehrenberg A. (2004) Le Sujet cerebral. Esprit, 309: 130-155.
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): 130-137.
Fombonne E. (2003) Modern views on autism. Canadian Journal of Psychiatry, 48 (8): 503-506.
Foucault M. (1988) Technologies of the self. L.H. Martin, H. Gutman, P.H. Hutton (eds) Technologies of the self, Amherst: University of Massachusetts Press: 16-49.
Freeman B.J., Cronin, P. (2002) Diagnosing autism spectrum disorder in young children: An update. Infants and Young Children, 14 (3): 1-10.
Gibbon S., Novas C. (2008) Introduction: Biosocialities, genetics and the social sciences. S. Gibbon, C. Novas (eds) Biosocialities, Genetics and the Social Sciences, London: Routledge: 1-18.
Goggin G., Newell C. (2003) Digital disability: The social construction of disability in new media, Lanham, MD: Rowman & Littlefield.
Goggin G., Noonan T. (2006) Blogging disability: The interface between new cultural movements and internet technology. A. Bruns, J. Jacobs (eds) Uses of blogs, New York: Peter Lang: 161-172.
Grandin T. (1995) Thinking in pictures: And other reports from my life with autism, New York: Vintage Books.
Hacking I. (1995) The looping effects of human kinds. D. Sperber, D. Premack, A. James-Premack (ads) Causal cognition: A multidisciplinary approach, Oxford: Clarendon Press: 351-383.
Hacking I. (2002) Making up people. Historical Ontology, Cambridge, MA: Harvard UP: 99-114.
Hacking I. (2006) What is Tom saying to Maureen? London Review of Books, 28 (9) (http://www.lrb.co.uk/v28/n09/hack01_.html)
Hacking I. (2009) Autistic autobiography. Philosophical Transactions of the Royal Society, B, 364:1467-1473.
Harmon A. (2004a) Adults and autism: An answer, but not a cure, for a social disorder. New York Times, 29 April.
Harmon A. (2004b) Neurodiversity forever: The disability movement turns to brains. New York Times, 9 May.
Harmon A. (2004c) How about not 'curing' us, some autistics are pleading. New York Times, 20 December.
Jones R., Meldal T.O. (2001) Social relationships and Asperger's syndrome: A qualitative analysis of first-hand accounts. Journal of Intellectual Disabilities, 5: 35-41.
Jones R.S.P., Zahl A., Huws J.C., (2001) First-hand accounts of emotional experiences in autism: A qualitative analysis. Disability & Society, 16: 393-401.
Jurecic A. (2007) Neurodiversity. College English, 69: 421-442.
Kenway I.M. (2009) Blessing or curse? Autism and the rise of the internet. Journal of Religion, Disability & Health, 13: 94-103.
Kirmayer L.J. (1988) Mind and body as metaphors: Hidden values in biomedicine. M. Lock, D.R. Gordon (eds) Biomedicine examined, Dordrecht: Kluwer Academic Publishers: 57-93.
Lage A. (2006) Autistas usam reme'dios para controlar aspectos da doen,ca. Folha Online, 27 July (http://www1.folha.uol.com.br/folha/equilibrio/noticias/ult263u4160. shtml)
Luhrmann T.M. (2000) Of two minds: The growing disorder in American psychiatry, New York: Alfred A. Knopf.
Martin E. (2000) Mind-body problems. American Ethnologist, 27: 569-590.
Martin E. (2007) Bipolar expeditions: Mania and depression in American culture, Princeton, NJ: Princeton UP.
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.
Merzenich M.M., Jenkins W.M. (1994) Cortical representations of learned behaviors. P. Andersen, O. Hvalby, O. Paulsen, B. Hokfelt (eds) Memory concepts, New York: Elsevier: 437-454.
Metzinger T. (2009) The ego tunnel: The science of the mind and the myth of the self, New York: Perseus Book Group.
Meyerding J. (1998) Thoughts on finding myself differently brained (https://www.autreat. com/jane.html)
Meyerding J. (2003) The great 'why label?' debate. (http://www.planetautism.com/jane/ label.html)
Miller D., Slater D. (2000) The internet: An ethnographic approach, Oxford: Berg.
Nadesan M.H. (2005) Constructing autism: Unravelling the 'truth' and understanding the social, London; New York: Routledge.
Nelson A. (2004) Declaration from the autism community that they are a minority group. (http://www.prweb.com/releases/2004/11/prweb179444.htm)
Newschaffer C.J., Curran L.K. (2003) Autism: An emerging public health problem. Public Health Reports, 118 (5): 393-399.
Ortega F. (2011) Toward a genealogy of neuroascesis. F. Ortega, F. Vidal. Neurocultures. Glimpses into an Expanding Universe, Frankfurt; New York: Peter Lang.
Ortega F., Vidal F. (2007) Mapping the cerebral subject in contemporary culture. RECIIS - Electronic Journal of Communication Information & Innovation in Health, 2: 255-259.
Osteen M. (ed.) (2008) Autism and representation, New York: Routledge.
Padden C., Humphries T. (2006) Inside deaf culture. Cambridge, MA: Harvard UP.
Rabinow P. (1992) Artificiality and enlightenment: From sociobiology to biosociality. J. Crary, S. Kwinter (eds) Incorporations, New York: Zone Books: 234-252.
Rees D., Rose S. (eds) (2004) The new brain sciences: Perils and prospects, Cambridge: Cambridge UP.
Rodriguez P. (2006) Talking brains: A cognitive semantic analysis of an emerging folk neuropsychology. Public Understanding of Science, 15: 301-330.
Rose N. (2007) The politics of life itself: Biomedicine, power, and subjectivity in the twenty-first century, Princeton, NJ: Princeton UP.
Rosenberg C.E. (2006) Contested boundaries: Psychiatry, disease, and diagnosis. Perspectives in Biology and Medicine, 49: 407-424.
Rubin S. (2005) Acceptance versus cure. (http://www.cnn.com/CNN/Programs/presents/ shows/autism.world/notebooks/sue/notebook.html)
Shapiro J. (1993) No pity: People with disabilities forging a new civil rights movement, New York: Random House.
Shapiro J. (2006) Autism movement seeks acceptance, not cures. (https://www.npr.org/ templates/story/story.php?storyld=5488463)
Silberman S. (2001) The Geek syndrome. Wired, 9 (12). (http://www.wired.com/wired/ archive/9.12/aspergers.html)
Silverman C. (2008a) Brains, pedigrees and promises: Lessons from the politics of autism genetics. S. Gibbon, C. Novas (eds) Biosocialities, genetics and the social sciences: Making biologies and identities, London: Routledge: 38-55.
Silverman C. (2008b) Fieldwork on another planet: Social science perspectives on the autism spectrum. BioSocieties, 3: 325-341.
Sinclair J. (1993) Don't mourn for us. Voice, 1 (3).
Sinclair J. (1999) Why I dislike 'person first' language. (https://pdfs.semanticscholar. org/80b8/5d920fd0fa6c259677e2004030de6fcc04b8.pdf)
Sinclair J. (2005) Autism network international: The development of a community and its culture. (https://www.autreat.com/History_of_ANI.html)
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. M. Corker, S. French (eds) Disability discourse, Buckingham: Open UP: 59-67.
Singer J. (2007) Light and dark: Correcting the balance. (http://web.archive.org/ web/20070310121441/http://www.neurodiversity.com.au)
Solomon A. (2008) The Autism Rights Movement. New York Magazine, 25 May. (http:// nymag.com/news/features/47225)
Swain J., Cameron C. (1999) Unless otherwise stated: Discourses of labeling and identity in coming out. M. Corker, S. French (eds) Disability discourse, Buckingham: Open UP: 68-78.
Valenstein E.S. (1998) Blaming the brain: The truth about drugs and mental health, New York: The Free Press.
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: 479-499.
Vidal F. (2009) Brainhood, anthropological figure of modernity. History of the Human Sciences, 22: 5-36.
Vrecko S. (2006) Folk neurology and the remaking of identity. Molecular Interventions, 6: 300-303.
Waltz M. (2005) Reading case studies of people with autistic spectrum disorders: A cultural studies approach to issues of disability representation. Disability & Society, 20: 421-435.
Weintraub K. (2005) A mother's perspective. (http://web.archive.org/web/20051216174906/ http://asatonline.org/resources/library/moms_perspective.html)
Wickelgren I. (2005) Autistic brains out of synch? Science, 308: 1856-1858.
Wilson S., Peterson L. (2002) The anthropology of online communities. Annual Review of Anthropology, 31: 449-467.
Wing L. (1997) The history of ideas on autism: Legends, myths and reality. Autism, 1: 13-23.
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