Skip to main content Accessibility help
×
Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-11-18T18:45:18.041Z Has data issue: false hasContentIssue false

4 - Childhood

Published online by Cambridge University Press:  07 June 2011

Alicia Ouellette
Affiliation:
Albany Law School
Get access

Summary

The experience of children with disability in the clinical setting is as varied as any other human experience. Many children with disabilities lead rich, full lives in which they attend school, play with friends, participate on sports teams, and come into contact with physicians for little other than routine well-child care visits. Other children with disabilities, particularly developmental disabilities, may be physically healthy but limited in their capacity for mental and social development. Still others may face disability-related or other health problems that bring them into regular contact with the health care system. Like all parents, parents of children with disabilities are the primary decision makers for their children. They make decisions about whether, when, and how to treat illness or use technology to correct or improve functionality. They also make decisions about whether, when, and how to manage the particular physical manifestations or social needs resulting from disability. As with most medical decision making for children, the process by which parents make medical decisions for children with disabilities is mostly unremarkable. The parents consult with the child's doctor, weigh the risk and benefits of medically reasonable alternatives, and then make the decision that is, in their estimation, in the best interest of their child.

The deference given parental decisions in the health care setting is more than a matter of convenience or custom. A parent's right to make medical decisions for his or her child is protected by the Due Process Clause of the Fourteenth Amendment.

Type
Chapter
Information
Bioethics and Disability
Toward a Disability-Conscious Bioethics
, pp. 137 - 193
Publisher: Cambridge University Press
Print publication year: 2011

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

Lane, Harlan & Grodin, Michael, Ethical Issues in Cochlear Implant Surgery: An Exploration into Disease, Disability, and the Best Interests of the Child, 7 Kennedy Inst. Ethics J., Sept. 1997, at 231, 234Google ScholarPubMed
Lane, Harlan, Ethnicity, Ethics, and the Deaf-World, 10 J. Deaf Stud. & Deaf Educ., Summer 2005, at 291, 299–300CrossRefGoogle ScholarPubMed
Zimmerman, Adam B., Do You Hear the People Sing? Balancing Parental Authority and a Child's Right to Thrive: The Cochlear Implant Debate, 5 J. Health & Biomed. L. 309, 317–18 (2009)Google Scholar
D'Silva, Margaret Usha, et al., Deaf is Dandy: Contrasting the Deaf and Hearing Cultures, 13 Intercultural Comm. Stud. 111 (2004)Google Scholar
Gao, Tingting, A Neglected Culture: How Cochlear Implants Affect Deaf Children's Self-Esteem, 6 Dialogues@ru79, 87 (2007), http://dialogues.rutgers.edu/vol_06/essays/documents/gao.pdfGoogle Scholar
Ramsey, Claire L., Ethics and Culture in the Deaf Community Response to Cochlear Implants, 21 Seminars Hearing75 (2000)CrossRefGoogle Scholar
Ramsey, Claire L., What Does Culture Have to Do with the Education of Students Who Are Deaf or Hard of Hearing?, inLiteracy And Deaf People: Cultural And Contextual Perspectives 47 (Brenda Jo Brueggemann ed., Gallaudet University Press 2004)Google Scholar
Sparrow, Robert, Defending Deaf Culture: The Case of Cochlear Implants, 13 J. Pol. Phil., May 2005, at 135Google Scholar
Groce, Nora Ellen, Everyone Here Spoke Sign Language: Hereditary Deafness on Martha's Vineyard (Harvard University Press 1985)Google Scholar
Restuccia, Andrew, Michael Schwartz: Multiple Communication Methods Assist Deaf Law Professor in and Outside of the Classroom, The Daily Orange, Mar. 7, 2010, http://www.dailyorange.com/2.8691/michael-schwartz-multiple-communication-methods-assist-deaf-law-professor-in-and-outside-of-the-classroom-1.1237578Google Scholar
Holte, Mary C. & Dinis, Maria C., Self-Esteem Enhancement in Deaf and Hearing Women: Success Stories, 146 Am. Annals Deaf, Oct. 2001, at 348, 352–53CrossRefGoogle ScholarPubMed
Bulford, Rachel, Children Have Rights Too, 314 BMJ 1421–2 (1997)CrossRefGoogle ScholarPubMed
Rossi, Wilma C. et al., Child Assent and Parental Permission in Pediatric Research, 24 Theoretical Med. & Bioethics, March 2003, at 131–8CrossRefGoogle ScholarPubMed
Diekema, Douglas S., Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State Intervention, 25 Theoretical Med. & Bioethics, July 2004, at 243, 244CrossRefGoogle ScholarPubMed
Benatar, David, Non-Therapeutic Pediatric Interventions, inThe Cambridge Textbook of Bioethics 127, 128 (Singer, Peter A. & Viens, Adrian M., eds., Cambridge University Press 2008)Google Scholar
Savulescu, Julian, Autonomy, the Good Life and Controversial Choices, inThe Blackwell Guide to Medical Ethics 17–37 (Rhodes, Rosamond et al. eds., Oxford: Blackwell Publishing 2007)Google Scholar
Davis, Dena S., Genetic Dilemmas and the Child's Right to an Open Future, 28 Rutgers L. J. 549 (1997)Google ScholarPubMed
Feinberg, Joel, The Child's Right to an Open Future, inWilliam Aiken, Whose Child? Children's Rights, Parental Authority, and State Power124, 125 (1980)Google Scholar
Fetzer, Philip & Houlgate, Laurence D., Are Juveniles Still ‘Persons’ Under the United States Constitution? A New Theory of Children's Constitutional Rights, 5 Int'l J. Child. Rts. 319 (1997) (emphasizing the difference between having a right and enjoying it)CrossRefGoogle Scholar
Davis, Dena S., The Child's Right to an Open Future: Yoder and Beyond, 26 Cap. U. L. Rev. 93, 94 (1997)Google Scholar
Davis, Dena S., Cochlear Implants and the Claims of Culture? A Response to Lane and Grodin, 7 Kennedy Inst. Ethics J., Sept. 1997, at 253–8CrossRefGoogle ScholarPubMed
Levy, Neil, Reconsidering Cochlear Implants: The Lessons of Martha's Vineyard, 16 Bioethics134 (2002)CrossRefGoogle ScholarPubMed
Ouellette, Alicia R., Growth Attenuation, Parental Choice, and the Rights of Disabled Children: Lessons from the Ashley X Case, 8 Hous. J. Health L. & Pol'y 207 (2008) (copyright © Alicia R. Ouellette)Google Scholar
Gunther, Daniel F. & Diekema, Douglas S., Attenuating Growth in Children with Profound Developmental Disability: A New Approach to an Old Dilemma, 160 Archives Pediatric & Adolescent Med. 1013, 1014 (2006)CrossRefGoogle Scholar
Charleton, James A., Nothing About Us Without Us: Disability Oppression and Empowerment (University of California Press 1998)CrossRefGoogle Scholar
Handbook of Disability Studies 351–514 (Albrecht, Gary L. et al. eds., Sage Publications, Inc. 2001) (documenting the experience of disability)
Johnson, Mary, Make Them Go Away: Clint Eastwood, Christopher Reeve, and the Case Against Disability Rights (The Advocado Press, Inc. 2003)Google Scholar
Johnson, Harriet McBryde, Too Late to Die Young: Nearly True Tales from a Life (Henry Holt and Co. 2005)Google Scholar
Shapiro, Joseph P., No Pity: People with Disabilities Forging a New Civil Rights Movement12–40 (Three Rivers Press 1993) (classifying the treatment received by people with disabilities as either “Tiny Tims” or “Super Crips”)Google Scholar
Peace, William, Protest from a Bad Cripple – Ashley Unlawfully Sterilized, Counterpunch, May 26, 2007, available athttp://counterpunch.org/peace 05262007.htmlGoogle Scholar
Allen, David B., et al., Growth-Attenuation Therapy: Principles for Practice, 123 Pediatrics, June 2009, at 1556CrossRefGoogle ScholarPubMed
Diekema, Douglas S. & Fost, Norman, Ashley Revisited: A Response to the Critics, 10 Am. J. Bioethics30 (2010)CrossRefGoogle ScholarPubMed
Wilfond, Benjamin S., The Ashley Case: The Public Response and Policy Implications, 37 Hastings Center Rep., Sept.–Oct. 2007, at 12–13CrossRefGoogle Scholar
Ross, Lainie Friedman, Growth Attenuation by Commission and Omission May Be Ethically Justifiable in Children with Profound Disabilities, 161 Archives Pediatrics & Adolescent Med., Apr. 2007, at 418CrossRefGoogle ScholarPubMed
Lindemann, Hilde & Neslon, James Lindemann, The Romance of the Family, 38 Hastings Center Rep., July–Aug. 2008, at 19CrossRefGoogle Scholar

Save book to Kindle

To save this book to your Kindle, first ensure coreplatform@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

  • Childhood
  • Alicia Ouellette
  • Book: Bioethics and Disability
  • Online publication: 07 June 2011
  • Chapter DOI: https://doi.org/10.1017/CBO9780511978463.006
Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

  • Childhood
  • Alicia Ouellette
  • Book: Bioethics and Disability
  • Online publication: 07 June 2011
  • Chapter DOI: https://doi.org/10.1017/CBO9780511978463.006
Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

  • Childhood
  • Alicia Ouellette
  • Book: Bioethics and Disability
  • Online publication: 07 June 2011
  • Chapter DOI: https://doi.org/10.1017/CBO9780511978463.006
Available formats
×