Autonomy and Disability
The Challenges Associated with Understanding the Exercise of Autonomy that Motivate the Formulation of Bioethics Applied to Disability
DOI:
https://doi.org/10.14422/rib.i22.y2023.005Keywords:
autonomy, disability, bioethics, disability bioethics, quality of life, adaptative preferencesAbstract
Performing an objective analysis of the exercise of autonomy in a person with a disability can be very complex if one considers beforehand the significant burden of discomfort derived from the limitations endured by the individual, secondary to the very nature of his/her condition, and the external mediators implied. Reviewing theoretical concepts on the possible variables at play in disability decision-making can provide a more accurate view on the difficulty of undertaking a bioethical assessment of the situation, avoiding falling into the trap of prejudice or not giving the appropriate value to the manifestation of the person’s self-will, scenarios with a significant impact on clinical bioethics.
Downloads
References
Barnes, E. (2020). ¿Where is the “dis” in disability? A review of the minority body: A theory of disability. By Elizabeth Barnes. Replies to commentaries. Philosophy and Phenomenological Research, 100(1), 225-231. https://doi.org/10.1111/phpr.12668
Brown, R. y Brown, I. (2003). Quality of life and disability: An approach for community practitioners. Jessica Kingsley Publishers.
Campbell, S. y Stramondo, J. (2017). The complicated relationship of disability and well-being. Kennedy Institute of Ethics Journal, 27(2), 151-84. https://doi.org/10.1353/ken.2017.0014
Curryer, B., Stancliffe, R. y Dew, A. (2015). Self-determination: Adults with intellectual disability and their family. Journal of Intellectual & Developmental Disability, 40(4), 394-399. https://doi.org/10.3109/13668250.2015.1029883
Di Tullio, A. (2021). Entre la libertad de elección y las preferencias adaptativas. reflexiones desde la teoría feminista. Asparkía. Investigació Feminista, (38), 251-265. https://doi.org/10.6035/Asparkia.2021.36.13
Gould, J. (2020). The complicated but plain relationship of intellectual disability and well-being. Canadian Journal of Bioethics, 3(1), 37-51. https://doi.org/10.7202/1068762ar
Gracia, D., Jarobo, Y., Martín-Espíldora, N. y Ríos, J. (2001). Toma de decisiones en el paciente menor de edad. Medicina Clínica, 117(5), 179-190. https://doi.org/10.1016/S0025-7753(01)72054-4
Guindry-Grimes, L. (2022). Disability bioethics and the commitment to equality. Theoretical Medicine and Bioethics, (43), 209-220. https://doi.org/10.1007/s11017-022-09575-2
Hall, M. (2017). The bioethics of enhancement: Transhumanism, disability and biopolitics. Lexington Books.
Hogan, A. (2022). Disability dialogues: Advocacy, science and prestige in postwar clinical professions. Johns Hopkins University Press.
Janssen, C., Schuengel, C. y Stolk, J. (2005). Perspectives on quality of life of people with intellectual disabilities: The interpretation of discrepancies between clients and caregivers. Quality of Life Research, (14), 57-69. https://doi.org/10.1007/s11136-004-1692-z
Kallander, E., Weimand, B., Hanssen-Bauer, K, Van Roy, B. y Ruud, T. (2021). Factors associated with quality of life for children affected by parental illness or substance abuse. Scandinavian Journal of Caring Sciences, (35), 405-419. https://doi.org/10.1111/scs.12868
Maagt, S. y Robeyns, I. (2013). ¿Can person-centered care deal with atypical persons? The American Journal of Bioethics, 8(13), 44-46.
Newell, C. (2006). Disability, bioethics and rejected knowledge. Journal of Medicine and Philosophy, (31), 269-283. https://doi.org/10.1080/03605310600712901
OMS. (1996). Clasificación Internacional del Funcionamiento, las Discapacidades y la Salud. OMS.
OMS. (2001). Clasificación Internacional del Funcionamiento, las Discapacidades y la Salud. OMS.
ONU. (2006). Declaración de la Convención Sobre los Derechos de las Personas con Discapacidad. https://www.un.org/esa/socdev/enable/documents/tccconvs.pdf
Pereira, G. (2007). Preferencias adaptativas: Un desafío para el diseño de las políticas sociales. Isegoría. Revista de filosofía y política, (36), 143-165. https://doi.org/10.3989/isegoria.2007.i36.63
Salas, S. de (2013). Los mecanismos de guarda legal de las personas con discapacidad tras la Convención de Naciones Unidas. Dykinson.
Sanchez, J., Muller, V., Chan, F., Brooks, J., Iwanaga, K., Tu, W., Umucu, E. y Crespo‐Jones, M. (2019). Personal and environmental contextual factors as mediators between functional disability and quality of life in adults with serious mental illness: a cross-sectional analysis. Quality of Life Research, 28, 441-450. https://doi.org/10.1007/s11136-018-2006-1
Schwartz, I. y Kelly, E. (2021). Quality of life for people with disabilities: Why applied behavior analysts should consider this a primary dependent variable. Research and practice for persons with severe disabilities, 46(3), 159-172. https://doi.org/10.1177/15407969211033629
Stramondo, J. (2021). Bioethics, adaptative preferences and judging the quality of a life with Disability. Social Theory and Practice, 47(1), 199-220. https://doi.org/10.5840/soctheorpract202121117
Terlazzo, R. (2015). Adaptative preferences: Mergin political accounts and well-being accounts. Canadian Journal of Philosophy, 45(2), 179-196. https://doi.org/10.1080/00455091.2015.1059252
Downloads
Published
How to Cite
Issue
Section
License
The authors of articles published in Revista Iberoamericana de Bioética retain the intellectual property rights over their works and grant the journal their distribution and public communication rights, consenting to their publication under a Creative Commons Attribution-NonCommercial-NoDerivates 4.0 Internacional. Authors are encouraged to publish their work on the Internet (for example, on institutional or personal pages, repositories, etc.) respecting the conditions of this license and quoting appropriately the original source.
