Abstract
Prevailing philosophies about parental and other caregiver responsibilities toward children tend to be protectionist, grounded in informed benevolence in a way that countenances rather than circumvents intrusive paternalism. And among the kinds of children an adult might be called upon to parent or otherwise care for, children with disabilities figure among those for whom the strongest and snuggest shielding is supposed be deployed. In this article, we examine whether this equation of securing well-being with sheltering by protective parents and other care-givers should unreflectively be adopted for disabled children. We also consider why healthcare providers might reasonably be reluctant to yield to this principle, even if parents instinctively suppose that protectionism is the parenting policy that best serves their disabled child’s interest. We contend that caregivers owe children with disabilities at least as much, and possibly more, respect for self-governance than other children need. In spite of disabled children’s vulnerability and even in view of it, we argue that they should be accorded not only welfare rights to well-being but at least a modified version of liberty rights as well. Healthcare providers are especially favorably positioned to facilitate the latter response. The main components of respectful caregiving can come into conflict with one another, but we present some priorities that advise against adopting a protectionist account of parenting rights, or at least against accepting protectionist views that focus parenting narrowly on shaping ideas about the child’s welfare. In sum, caring for a disabled child, we argue, involves more than creating conditions that will afford her contentment and comfort over the course of life.
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References
Ashley’s Mom and Dad. (2007). The “Ashley Treatment”, towards a better quality of life for “Pillow Angels." http://pillowangel.org/Ashley%20Treatment.pdf.
Bentham, J., Burns, J. H., & Hart, H. L. A. (1996). An introduction to the principles of morals and legislation. Oxford: Clarendon Press.
Bignall, T., & Butt, J. (2000). Between ambition and achievement: Young black disabled people’s views and experiences of independence and independent living. Bristol: The Policy Press.
Brennan, S. (2002). Children’s choices or children’s interests: Which do their rights protect? In D. Archard & C. Macleod (Eds.), The Moral and Political Status of Children: New Essays (pp. 53–69). Oxford: Oxford University Press.
Burkholder, A. (2007). Pillow angel’ surgery broke law, CNN Health. www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html?_s=PM:HEALTH.
Carlson, D., & Dorfman, D. (2007). Investigative report regarding the “Ashley treatment.” Seattle, WA: Washington Protection and Advocacy System.
Cheston, R. (1994). The accounts of special education leavers. Disability & Society, 9 (1), 59–69.
Clarren, R. (2007). Behind the pillow angel. Salon. http://www.salon.com/2007/02/09/pillow_angel_2/. Accessed November 2, 2017.
Connors, C., & Stalker, K. (2003). The views and experiences of disabled children and their siblings: A positive outlook. London: Jessica Kingsley Publishers.
Cureton, A. (2013). From self-respect to respect for others. Pacific Philosophical Quarterly, 94 (2) , 166–187.
Cureton, A. (2014). Making room for rules. Philosophical Studies, 72(3), 737–759.
Diekema, Douglas. (2004). Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theoretical Medicine and Bioethics, 25(4), 243–264.
Douglas, T. (2015). Substituted judgment, procreative beneficence, and the Ashley treatment. Journal of Medical Ethics, 41(9), 721–722.
Edwards, S. D. (2008). The Ashley treatment: A step too far, or not far enough? Journal of Medical Ethics, 34(5), 341–343.
Elliott, J. M. (1995). Edward V. Roberts, 56, champion of the disabled. The New York Times. http://www.nytimes.com/1995/03/16/obituaries/edward-v-roberts-56-champion-of-the-disabled.html.
Evans, M. (2017) Functional vision and motor skills. Pediatric Physical Therapy. https://maryevanspt.wordpress.com/.
Farson, R. E. (1974). Birthrights. New York: Macmillan.
Feinberg, J. (1971). Legal paternalism. Canadian Journal of Philosophy, 1(1), 105–124.
Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford: Oxford University Press.
Godwin S. (2016). Against parental rights. Columbia Human Rights Law Review, 47(1), 1-84.
Gunther, D. F., & Diekema, D. S. (2006). Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Archives of Pediatrics and Adolescent Medicine, 160(10), 1013–1017.
Harnacke, C. (2016). The Ashley treatment: Improving quality of life or infringing dignity and rights? Bioethics, 30(3), 141–150.
Herman, S. E., & Thompson, L. (1995). Families’ perceptions of their resources for caring for children with developmental disabilities. Mental Retardation, 33(10), 73–83.
Hill, T. E. (1992a) Humanity as an end in itself. In T. E. Hill (Ed.), Dignity and practical reason in Kant’s moral theory (pp. 38–57). Ithaca: Cornell University Press.
Hill, T. E. (1992b). The kingdom of ends. In T. E. Hill (Ed.), Dignity and Practical Reason in Kant’s Moral Theory (pp. 58–66). Ithica: Cornell University Press.
Hill, T. E. (2000). Basic respect and cultural diversity. In T. E. Hill (Ed.), Respect, pluralism, and justice: Kantian perspectives (pp. 59–86). Oxford: Oxford University Press.
Hill, T. E. (2012) Treating criminals as ends in themselves. In T. E. Hill (Ed.), Virtue, rules and justice: Kantian aspirations (pp. 296–319). Oxford: Oxford University Press.
Holt, J. C. (1975). Escape from childhood: The needs and rights of children. Harmondsworth: Penguin.
Husak, D. (2010). Paternalism and consent. In F. G. Miller & A. Wertheimer (Eds.), The ethics of consent: Theory and practice (pp. 107–130). Oxford: Oxford University Press.
Kant, I. (2001). Kant on the metaphysics of morals: Vigilantius’s lecture notes. In P. L. Heath & J. B. Schneewind (Eds.), Lectures on ethics (pp. 249–452). Cambridge: Cambridge University Press.
Kant, I. (2007a). Anthropology from a pragmatic point of view. In G. Zöller & R. B. Louden (Eds.), Anthropology, history, and education (pp. 227–429). Cambridge: Cambridge University Press.
Kant, I. (2007b). Lectures on pedagogy. In G. Zöller, & R. B. Louden (Eds.), Anthropology, history, and education (pp. 486–527). Cambridge: Cambridge University Press.
Kant, I. (2002). Groundwork for the metaphysics of morals. T.E. Hill (Ed.), A. Zweig (Trans.). Oxford: Oxford University Press.
Kittay, E. F. (1999). Love’s labor: Essays on women, equality, and dependency. New York: Routledge.
Kittay, E. F. (2011). Forever small: The strange case of Ashley X. Hypatia, 26(3), 610–631.
Kopelman, L. M. (1997). Children and bioethics: Uses and abuses of the best-interests standard. Journal of Medicine and Philosophy, 22(3), 213–217.
Kopelman, Loretta M. (2005). Rejecting the baby doe rules and defending a “negative” analysis of the best interests standard. Journal of Medicine and Philosophy, 30(4), 331–352.
Liao, S. M., Savulescu, J., & Sheehan, M. (2007). The Ashley treatment: Best interests, convenience, and parental decision-making. Hastings Center Report, 37(2), 16–20.
Mill, J. S. (1998). Utilitarianism. Oxford: Oxford University Press.
Mims, C. The Pillow Angel case—three bioethicists weigh. Scientific American. https://www.scientificamerican.com/article/the-pillow-angel-case-th/. Accessed May 1, 2007.
Nussbaum, M. C. (2006). Frontiers of justice: Disability, nationality, species membership. Cambridge, MA: The Belknap Press.
Purdy, L. M. (1992). In their best interest? The case against equal rights for children. Ithaca: Cornell University Press.
Silvers, A. (2012). Moral status: What a bad idea! Why discard it? What replaces it? The Journal of Intellectual Disability Research, 56(11), 1014–1025.
Silvers, A., & Francis, L. P. (2010). Thinking about the good: Reconfiguring metaphysics (or not) for people with cognitive disabilities. In E. F. Kittay & L. Carlson (Eds.), Cognitive disability and its challenge to moral philosophy (pp. 237–260). Malden, MA: Wiley-Blackwell.
Watson, N., Shakespeare, T., Cunningham, Burley S., et al. (1999). Life as a disabled child: A qualitative study of young people’s experiences and perspectives. Edinburgh and Leeds: Universities of Edinburgh and Leeds.
Wright, L., Mullen, T., West, K., et al. (1993) The vcop scale: A measure of overprotection in parents of physically vulnerable children. Journal of Clinical Psychology 49 (6):790-798.
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Cureton, A., Silvers, A. Respecting the Dignity of Children with Disabilities in Clinical Practice. HEC Forum 29, 257–276 (2017). https://doi.org/10.1007/s10730-017-9326-3
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DOI: https://doi.org/10.1007/s10730-017-9326-3