2004
Volume 25, Issue 1
  • ISSN: 1388-3186
  • E-ISSN: 2352-2437

Abstract

Abstract

The relationships between neurodivergent and disabled communities, and healthcare practices, are marked by ambivalence. While there is a history of harmful and discriminatory practices, the clinical encounter also holds beneficial and empowering potential for neurodivergent and disabled people. To address this ambivalence, this paper’s central question is whether and how bioethical decision-making in healthcare settings can become more informed by critical insights from neurodiversity and disability studies. The bioethical debate in Western countries on early interventions for young autistic children will be the case animating my theoretical propositions. I provide a working definition of such a ‘disability approach to bioethics’ and review the obstacles in both mainstream bioethics and disability studies this approach has to overcome. Then, the ethical concept of vulnerability, its feminist reinterpretation, and its potential for disability bioethics are introduced. Instead of using the concept in its traditional, problematic sense, I propose that vulnerability can be reclaimed, or cripped, by neurodiversity and disability movements to do the exact opposite: to trouble the demarcation between the vulnerable and the invulnerable, to stress structural injustices over individual deficits, and to justify solidaristic, empowering interventions over paternalist ones. Finally, this ‘cripped account of vulnerability’ will be applied to the case of early autism intervention.

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2022-05-01
2022-05-21
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References

  1. Askham, A.V., & Dattaro, L. (2021). Backlash from autistic community pauses research, exposes communication gaps. Spectrum. doi: 10.53053/ZQIJ5133
    [Google Scholar]
  2. Berne, P., Morales, A.L., & Langstaff, D. (2018). Ten principles of disability justice. Wsq, 46(1–2), 227–229. doi: 10.1353/wsq.2018.0003
    [Google Scholar]
  3. Bottema-Beutel, K., Kapp, S.K., Lester, J.N., Sasson, N.J., & Hand, B.N. (2021). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood, 3(1), 18–29. doi: 10.1089/aut.2020.0014
    [Google Scholar]
  4. Bradshaw, J., Trumbull, A., Stapel-Wax, J., Gillespie, S., George, N., Saulnier, C., … Wetherby, A. (2020). Factors associated with enrollment into a clinical trial of caregiver-implemented intervention for infants at risk for autism spectrum disorder. Autism, 24(7), 1874–1884. doi: 10.1177/1362361320928829
    [Google Scholar]
  5. Brody, H. (2009). The future of bioethics. New York: Oxford University Press.
    [Google Scholar]
  6. Butler, J., Gambetti, Z., & Sabsay, L. (2016). Vulnerability in resistance. Durham: Duke University Press.
    [Google Scholar]
  7. Chapman, R. (2019). Neurodiversity theory and its discontents: Autism, schizophrenia, and the social model of disability. In R.Bluhm (Ed.), The Bloomsbury companion to philosophy of psychiatry (pp. 371–390). London: Bloomsbury Academic. doi: 10.5040/9781350024090.ch-018
    [Google Scholar]
  8. Chapman, R., & Bovell, V. (n.d.). Neurodiversity, advocacy, anti-therapy. In P.Sturmey &J.Matson (Eds.), Handbook of autism and pervasive developmental disorder. Retrieved from https://www.researchgate.net/publication/348062568
    [Google Scholar]
  9. Chiapperino, L., & Tengland, P.A. (2015). Empowerment in healthcare policy making: Three domains of substantive controversy. Health Promotion Journal of Australia, 26(3), 210–215. doi: 10.1071/HE15035
    [Google Scholar]
  10. Cook, J., Hull, L., Crane, L., & Mandy, W. (2021, November1). Camouflaging in autism: A systematic review. Clinical Psychology Review, 89, 102080. doi: 10.1016/j.cpr.2021.102080
    [Google Scholar]
  11. Dawson, M. (2004). The misbehaviour of behaviourists: Ethical challenges to the autism-ABA industry. Retrieved from https://www.sentex.ca/~nexus23/naa_aba.html
    [Google Scholar]
  12. Fineman, M.A., & Grear, A. (2013). Vulnerability: Reflections on a new ethical foundation for law and politics. London: Routledge.
    [Google Scholar]
  13. Garden, R. (2015). Ethics. In R.Adams, B.Reiss, & D.Serlin (Eds.), Keywords for disability studies (pp. 70–74). New York: New York University Press.
    [Google Scholar]
  14. Garland-Thomson, R. (2017). Disability bioethics: From theory to practice. Kennedy Institute of Ethics Journal, 27(2), 323–339. doi: 10.1353/ken.2017.0020
    [Google Scholar]
  15. Goodley, D., & Runswick-Cole, K. (2012). Reading Rosie: The postmodern disabled child. Educational and Child Psychology, 29(2), 53–66. doi: 10.1016/B978-0-12-801474-5.00001-3
    [Google Scholar]
  16. Heikkilä, M., Katsui, H., & Mustaniemi-Laakso, M. (2020). Disability and vulnerability: A human rights reading of the responsive state. International Journal of Human Rights, 24(8), 1180–1200. doi: 10.1080/13642987.2020.1715948
    [Google Scholar]
  17. Hens, K., Robeyns, I., & Schaubroeck, K. (2019). The ethics of autism. Philosophy Compass, 14(1), e12559. doi: 10.1111/phc3.12559
    [Google Scholar]
  18. Hosozawa, M., Sacker, A., Mandy, W., Midouhas, E., Flouri, E., & Cable, N. (2020). Determinants of an autism spectrum disorder diagnosis in childhood and adolescence: Evidence from the UK Millennium Cohort Study. Autism, 24(6), 1557–1565. doi: 10.1177/1362361320913671
    [Google Scholar]
  19. Kafer, A. (2013). Feminist, queer, crip. Bloomington: Indiana University Press. doi: 10.3224/insep.v2i1.17069
    [Google Scholar]
  20. Kittay, E.F. (2019). Learning from my daughter: The value and care of disabled minds. New York: Oxford University Press. doi: 10.1093/oso/9780190844608.001.0001
    [Google Scholar]
  21. Landa, R.J. (2018). Efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders. International Review of Psychiatry, 30(1), 25–39. doi: 10.1080/09540261.2018.1432574
    [Google Scholar]
  22. Leadbitter, K., Buckle, K.L., Ellis, C., & Dekker, M. (2021). Autistic self-advocacy and the neurodiversity movement-: Implications for autism early intervention research and practice. Frontiers in Psychology, 12(April), 1–7. doi: 10.3389/fpsyg.2021.635690
    [Google Scholar]
  23. Lid, I.M. (2015). Vulnerability and disability: A citizenship perspective. Disability and Society, 30(10), 1554–1567. doi: 10.1080/09687599.2015.1113162
    [Google Scholar]
  24. Luna, F. (2009). Elucidating the concept of vulnerability: Layers not labels. IJFAB: International Journal of Feminist Approaches to Bioethics, 2(1), 121–139. doi: 10.3138/ijfab.2.1.121
    [Google Scholar]
  25. Magnani, N. (2020). The “great equalizer”? Autonomy, vulnerability and solidarity in uncertain times. Biblioteca Della Libertà, 2(228), 1–22.
    [Google Scholar]
  26. McCrary, L.K. (2017). Re-envisioning independence and community: Critiques from the Independent Living Movement and L’Arche. Journal of Social Philosophy, 48(3), 377–393. doi: 10.1111/josp.12195
    [Google Scholar]
  27. Neurodiversity Advocates. (2021). Petition Whitehouse et al. 2021: Meet with Autistic Advocates to discuss diagnosis reduction study. Retrieved from https://www.ipetitions.com/petition/diagnoses-prevention-study-meet-Autistic-advocates
  28. Ouellette, A. (2011). Bioethics and disability: Toward a disability-conscious bioethics. New York: Cambridge University Press. doi: 10.1017/cbo9780511978463
    [Google Scholar]
  29. Riley, B., & Wevers, J. (2020). Autist of persoon met autisme?Autisme Magazine, 49(3), 2020, 16–17.
    [Google Scholar]
  30. Roche, L., Adams, D., & Clark, M. (2021). Research priorities of the autism community: A systematic review of key stakeholder perspectives. Autism : The International Journal of Research and Practice, 25(2), 336–348. doi: 10.1177/1362361320967790
    [Google Scholar]
  31. Rogers, W. (2013). Vulnerability and bioethics. In C.Mackenzie, W.Rogers, & S.Dodds (Eds.), Vulnerability: New essays in ethics and feminist philosophy (pp. 60–87). New York: Oxford University Press. doi: 10.1093/acprof:oso/9780199316649.001.0001
    [Google Scholar]
  32. Rogers, W., Mackenzie, C., & Dodds, S. (2012). Why bioethics needs a concept of vulnerability. IJFAB: International Journal of Feminist Approaches to Bioethics, 5(2), 11–38. doi: 10.3138/ijfab.5.2.11
    [Google Scholar]
  33. Rosqvist, H.B., Chown, N., & Stenning, A. (2020). Neurodiversity studies: A new critical paradigm. London: Routledge. doi: 10.4324/9780429322297
    [Google Scholar]
  34. Rosqvist, H.B., Stenning, A., & Chown, N. (2020). Neurodiversity studies: Proposing a new field of inquiry. In Neurodiversity studies: A new critical paradigm (pp. 226–229). London: Routledge.
    [Google Scholar]
  35. Sandbank, M., Bottema-Beutel, K., & Woynaroski, T. (2021, April1). Intervention recommendations for children with autism in light of a changing evidence base. JAMA Pediatrics175(4), 341–342. doi: 10.1001/jamapediatrics.2020.4730
    [Google Scholar]
  36. Schuck, R.K., Tagavi, D.M., Baiden, K.M.P., Dwyer, P., Williams, Z.J., Osuna, A., … Vernon, T.W. (2021). Neurodiversity and autism intervention: Reconciling perspectives through a naturalistic developmental behavioral intervention framework. Journal of Autism and Developmental Disorders, 1–21. doi: 10.1007/s10803-021-05316-x
    [Google Scholar]
  37. Scully, J.L. (2008). Disability bioethics: Moral bodies, moral difference. Lanham: Rowman & Littlefield Publishers.
    [Google Scholar]
  38. Scully, J.L. (2013). Disability and vulnerability: On bodies, dependence, and power. In C.Mackenzie, W.Rogers & S.Dodds (Eds.), Vulnerability: New essays in ethics and feminist philosophy. New York: Oxford University Press.
    [Google Scholar]
  39. Singer, J. (1998). Odd people in: The birth of community amongst people on the autistic spectrum. A personal exploration based on neurological diversity (Unpublished bachelor’s thesis). University of Technology, Sydney.
    [Google Scholar]
  40. Spaan, N., & Schippers, A. (2020). COVID-19: Taal als spiegel – aannames over kwetsbaarheid. Nederlands Tijdschrift Voor Zorg Aan Mensen Met Verstandelijke Beperkingen (NTZ), 46(3), 112–117.
    [Google Scholar]
  41. Stramondo, J.A. (2016). Why bioethics needs a disability moral psychology. Hastings Center Report, 46(3), 22–30. doi: 10.1002/hast.585
    [Google Scholar]
  42. Ten Have, H. (2016). Vulnerability: Challenging bioethics. London: Routledge. doi: 10.4324/9781315624068
    [Google Scholar]
  43. Van Goidsenhoven, L., & Vanaken, G.-J. (2021). Autisme als meerduidig en politiek fenomeen: een disability studies perspectief. Wetenschappelijk Tijdschrift Autisme, 20(1), 13–32.
    [Google Scholar]
  44. Vanaken, G.-J., & Van Goidsenhoven, L. (2021). CRIP. Over de aantrekkelijkheid van kreupele lichamen. Rekto:Verso, (91), 10–16.
    [Google Scholar]
  45. Whitehouse, A.J.O., Varcin, K.J., Pillar, S., Billingham, W., Alvares, G.A., Barbaro, J., … Hudry, K. (2021). Effect of preemptive intervention on developmental outcomes among infants showing early signs of autism: A randomized clinical trial of outcomes to diagnosis. JAMA Pediatrics, 175(11), E213298. doi: 10.1001/jamapediatrics.2021.3298
    [Google Scholar]
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