Moving Beyond the "Clash of Cultures"

"The perceptions and values of disabled people (particularly disability rights advocates and disabled social scientists) and of many nondisabled people (particularly health care professionals, ethicists, and health policy analysts), regarding virtually the whole range of current health and medical-ethical issues (treatment decision making, health care access and health care rationing, medical cost-containment, and assisted suicide) seem frequently to conflict with one another....Can we bridge the apparent gulf between disabled and nondisabled perspectives?...The perspectives and values of the disability rights community...need to be incorporated into the ongoing debate about medical practice, ethics, and policy."

--Paul Longmore, "Medical Decision Making and People with Disabilities: A Clash of Cultures," J of Law, Medicine and Ethics 23 (1995): 82-87.

Sunday, November 7, 2010

Disability on the Literature, Arts & Medicine Database

Artist Laura Ferguson investigates and aestheticizes her own body, deformed by severe scoliosis.

Introduction to Songs of the Guerrilla Nation: My Journey through Autism, memoir by Dawn Prince- Hughes

These are two examples from many annotations of art, literature, film, and theater involving disability on the NYU Literature, Arts and Medicine Database.

Thanks to Felice Aull, Editor.

Thursday, November 4, 2010

select bibliography--bioethics & disability

compiled by Rebecca Garden (

American J. of Bioethics--target article and commentaries. AJOB 2001; 1(3).

Asch, A. Disability, bioethics, and human rights. Handbook of Disability Studies. Gary L. Albrecht, Katherine D. Seelman, Michael Bury, eds.

Amundson, R., Tresky, S.  Bioethics and Disability Rights: Conflicting Values and Perspectives.  J of Bioethical Inquiry. 5(2-3) 111-123.



Amundson, R., Taira, G. Our Lives and Ideologies:  The Effect of Life Experience on the Perceived Morality of the Policy of Physician-Assisted Suicide. Journal of Disability Policy Studies Vol. 16/No. 1/2005/Pp. 53–57.

Clapton, J.  Tragedy and catastrophe, Journal of Intellectual Disability Research 47(7); Oct 2003: 540-7

Hahn, H.  Bioethical debates, disability discourse, and a discordant singer.  J of Disability Policy Studies.

Journal of Bioethical Inquiry--special issue: "Reconfiguring Disability: From Bioethics to Biopolitics,"  Vol. 5, Numbers 2-3.

Kirschner KL, Brashler R, Savage TA (2007). Ashley X. Am J Phys Med Rehabil. 86(12):1023-9.

Kirschner KL. Rethinking Anger and Advocacy in Bioethics.  American J of Bioethics. Summer 2001, Volume 1, Number 3: 60-63.

Kittay, E.F., Carlson, L. eds.  Cognitive Disability and Its Challenge to Moral Philosophy (Metaphilosophy Series in Philosophy) Wiley-Blackwell 2010.

Koch, T. Disability and difference: balancing social and physical constructions. J Med Ethics 2001;27:370-376.

Kumari Campbell, F. Contours of Ableism: The Production of Disability and Abledness

 Palgrave Macmillan (October 27, 2009

Kuczewski, M.G. (2001) Disability: An Agenda for Bioethics. American Journal of Bioethics, 1(3): 36-44.

Kuczewski, MG, Fiedler, I, (2005) Ethical Issues in Physical Medicine and Rehabilitation: Treatment Decision Making with Adult Patients, Critical Reviews in Physical and Rehabilitation Medicine 17(1): 31-52.

Kuczewski, MG, Fiedler, I, (2005) Ethical Issues in Physical Medicine and Rehabilitation: Treatment Decision Making with Adult Patients, Critical Reviews in Physical and Rehabilitation Medicine 17(1): 31-52.

Leach Scully, J.  Disability Bioethics: Moral Bodies, Moral Difference. Rowman & Littlefield  2008.

Newell, C. "Biomedicine, Genetics and Disability: reflections on nursing and a philosophy of holism," Nursing Ethics, Vol. 7, No. 3, 227-236 (2000).

Newell, C. Disability, Bioethics, and Rejected Knowledge.  J of Medicine and Philosophy 31(3): 269-83.

Overboe, J. Disability and Genetics: Affirming the Bare Life (the State of Exception).   The Canadian Review of Sociology and Anthropology; May 2007; 44, 2; pg. 219

Parens, E. Asch, A. Prenatal Testing and Disability Rights. Georgetown University Press 2000.

Savage, T. A. Savage, Carol J. Gill, and Kristi L. Kirschner, Editors of the Special Section, “Introduction to a Special Section on Disability Ethics,” The Journal of Clinical Ethics 15, no. 4 (Winter 2004): 256-63.

Shakespeare, T. Disability Rights & Wrongs.  Routledge 2006.

Silvers, A.  Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy.  Rowman and Littlefield, 1999.

Squier, S. M. Narrating genetic disabilities: social constructs, medical treatment, and public policy.  Issues in Law and Medicine.

Theoretical Medicine and Bioethics--special issue.  Vol. 24, no. 6, 2003.

Tremain, S. The Biopolitics of Bioethics and Disability, J. of Bioethical Inquiry. 5(2-3): 101-106.

Tremain, S.L., ed. Foucault and the Government of Disability (Corporealities: Discourses of Disability). U of Michigan 2005.

Tremain, S.L. Stemming the tide of normalization. J. of Bioethical Inquiry 2006; 3(1-2): 33-42.

Wendell, S. The Rejected Body: Feminist Philosophical Reflections on Disability. Routledge, 1996.

Wolbring, G. Disabled People’s Approach to Bioethics.  American J of Bioethics. Summer 2001, Volume 1, Number 3

Wolbring, G. Disability rights approach toward bioethics? (Point/Counterpoint) Journal of Disability Policy Studies 2003.

Wednesday, October 27, 2010

Bioethics Research Library site at Georgetown

The link to ETHXWeb is here:

Try searching the ETHXWeb on the Boolean search
screen, using this simple strategy: (rehab+ or disab+)[ti]

(Explanation: this searches for the word roots "rehab" or "disab" in the
title of any entry.)

Currently this strategy retrieves a listing of 2145 citations, displayed
in reverse chronological order.

Monday, October 25, 2010

Curriculum exercise to clarify values and intolerable states

Kristi L. Kirschner, M.D.
Professor, Clinical Medical Humanities and Bioethics, and PM&R
Northwestern University Feinberg School of Medicine
Attending physician, Schwab Rehabilitation Hospital

Some suggested resources to use:

Bauby JD. The Diving Bell and the Butterfly (either the book or the movie)

Sixty minute Video of ALS survivors (aired after the Death by Doctor segment of Kevorkian euthanizing Thomas Youk); we were able to obtain by writing 60 minutes and purchasing the segment for educational use

Sledz M, Oddy M, Beaumont JG. Psychological adjustment to locked-in syndrome. J Neurol Neurosurg Psychiatry 2007;78:1407-1416

Abrantes-Pais FDN, Friedman JK, Lovalloo WR, Ross ED. Psychological or physiological:  Why are tetraplegic patients content? Neurology 2007;69:261-267

Bruno MA, Pellas F, Schnakers C, Van Eeckhout P, Bernheim J, Pantke KH, Damas F, Faymonville ME, Moonen G, Goldman S, Laureys S. Le Locked-In syndrome: la conscience emmurée blink and you live: The locked-in syndrome. Revue neurologique 2008;164(4):322-335

Bach JR, Tilton MC. Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Arch Phys Med Rehabil 1994;75:626-632

Gerhart KA, Koziol-McLain J, Lowenstein SR, Whiteneck GG. Quality of life following spinal cord injury: knowledge and attitudes of emergency care provide providers. Annals of Emergency Med 1994;23(4):807-812

Longmore P.  Medical Decision Making and People with Disabilities: A Clash of Cultures. Journal of Law, Medicine and Ethics 1995; 23;82-87.

 Asch A. Distracted by disability. Cambridge Quarterly of Healthcare Ethics 1998;77-87.

Albrecht  GL, Devliger PJ. The Disability Paradox: High quality of life against all odds. Social Science Medicine 1999;48; 977-988.

Ubel PA, Loewenstein G, Schwarz N, Smith D.  Misimagining the unimaginable: The Disability Paradox and Health Care Decision Making. Health Psychology 24(4) Supplement, July 2005, 557-562.

Ubel PA, Lowenstein G, Jepson C. Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Quality of Life Research 2003;12:599-607.

Kothari S, Kirschner KL. “Abandoning the Golden Rule:  The Problem with ‘Putting Ourselves in the Patient’s Place.’” Top Stroke Rehabil  2006 13:4; 68-73.

Kirschner KL. “When written advance directives are not enough.” Chapter for Clinics in Geriatric Medicine.  New York:  Elsevier Inc. Emanuel L, special issue editor, 2005; 193-209. (invited; peer reviewed)

Kirschner KL. “Calling it quits:  When patients or proxies request to withdraw or withhold life-sustaining treatment after spinal cord injury,” special ethics issue, Top Spin Cord Inj Rehabil 2008;13(3):30-43.

Kirschner KL. “ Liminal states:  The challenge of new-onset disability,” lead article in Atrium, the Report of the Northwestern Medical Humanities and Bioethics Program, Issue 2,  Winter 2006, pp. 1-3, 6. (invited)

Kirschner KL with Lane G. A New Normal. Atrium, the Report of the Northwestern Medical Humanities and Bioethics Program, Issue 8  Summer 2010; 21-24. (invited)

Selected resources for teaching disability in the health care professions

Kristi L. Kirschner MD
Professor, Clinical Medical Ethics and Humanities and PM&R
Northwestern University Feinberg School of Medicine
Attending Physician, Schwab Rehabilitation Hospital

ASBH 10/21/10

Albrecht GL, Seelman KD, Bury M.  (Eds.) The Handbook of  Disability Studies. Thousand Oaks, CA: Sage Publishers, 2001.

Iezzoni L, O’Day  BL. More Than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities. Oxford: Oxford University Press, 2006.

Educational DVD and training curriculum: Access to Medical Care, World Institute on Disability 2005

Gill CG, Kirschner KL.  Educational DVD.  Learning to Act in Partnership:  Women with Disabilities Speak to Health Professionals, 2002. Rehabilitation Institute of Chicago Women with Disabilities Center 312.238.8003; Fax: 312.238.1205;

Modular curricular materials developed by Academic Professors of Obstetrics and Gynecology

The Center for Universal Design at North Carolina State University   brochure “Removing Barriers to Healthcare”

US Department of Health and Human Services, Office of Civil Rights:  Civil Rights on the Basis of Disability

The Center for Disabilities in the Health Professions Tool for decreasing health care barriers: Accessible health care briefs.

Panko Reis J, Breslin ML, Iezzoni LI, Kirschner KL.  It takes more than ramps to solve the crisis of healthcare for people with disabilities.  Chicago:  Rehabilitation Institute of Chicago, Sept 2004.

Electronic tool kit of curricular resources for health professions students has been made available through the Association of University Centers on Disability
Kirschner KL, Breslin ML, Iezzoni LI. “Structural Impairments That Limit Access to Health Care for Patients with Disabilities.”  JAMA 2007; 297(10): 1121-1125.

Kirschner KL, Curry RH.  “Educating Health Care Professionals to Care for Patients with Disabilities,”  JAMA 2009; 302(12): 1334-5.

Shakespeare T.  Disability Rights and Wrongs.  New York: Routledge, 2006

Shapiro JP. No Pity: People with Disabilities Forging a New Civil Rights Movement.  New York: Three Rivers Press, 1994.

Tuesday, October 19, 2010


Staring Back: The Disability Experience from the Inside Out Kenny Fries (ed); PLUME, 1997
Elephant Man, Bernard Pomerance, Grove, 1979
Articulating the Elephant Man: Joseph Merrick and His Interpreters Peter W. Graham and Fritz H. Oehlschlaeger Johns Hopkins University Press, 1992
Broken Vessels: Essays Andre Dubus David R. Grodine Pub., 1991; Meditations from a Moveable Chair, Vintage, 1999
The Diving Bell and the Butterfly Jean Dominique Bauby, Vintage International, 1997
Behind the Curtain: Disability, Illness, and the Extraordinary Body in Contemporary Theater Thomas Fahy and Kimball King (eds), Routledge, 2002
A Whole New Life: An Illness and a Healing Reynolds Price, PLUME, 1995.
A Healing Family; A Personal Matter Kenzaburo Oe Kodansha International, 1995, Grove Press, 1969
Autobiography of a Face, Lucy Grealy; Harper Perennial, 2003
Truth and Beauty: A Friendship, Ann Patchett, HarperCollins, 2004
The Body Silent Robert Murphy, WW Norton, 1990
Plain Text: Essays, Nancy Mair, University of Arizona Press, 1986; Waist-High in the World: A Life among the Nondisabled, 1997
After the Stroke, May Sarton, WW Norton, 1988
Staring: How We Look Rosemarie Garland-Thomson, Oxford University Press, 2009; Extraordinary Bodies, Columbia University Press, 1996
Regarding the Pain of Others Susan Sontag, Picador, 2003
The Disability Studies Reader, Lennard Davis, Routledge 2010
Nothing About Us Without Us, James Charlton, Univ of California Press, 2000
Disability Studies: Ennabling the Humanities, Sharon L. Snyder, Brenda Jo Brueggeman, Rosemarie Garland-Thomson, (eds), Modern Language Association of America, 2002

Johanna Shapiro, PhD
Director, Program in Medical Arts and Humanities
Faculty Advisor, Plexus: Journal of Arts & Humanities
Family Medicine
U of California, Irvine

Monday, October 18, 2010

Resources for Clinicians: Communicating with Disabled People

Your Next Patient has a Learning Disability (a two-page guide)

Disability Etiquette: Tips on Interacting with People with Disabilities
(a 36-page booklet, for general use)

The Ten Commandments of Communicating with People With Disabilities