Obermann Symposium on Disability Ethics

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Participant Biographies

Carol Gill, Ph.D.
Director of Graduate Studies & PhD in Disabilities
Center Director, Chicago Center for Disability Research

Executive Officer, Society for Disability Studies Office
University of Illinois at Chicago
Chicago, IL

http://www.ahs.uic.edu/ahs/php/content.php?type=7&id=59

Biography

Carol J. Gill, Ph.D. is the Director of Graduate Studies & PhD in Disabilities and a clinical and research psychologist specializing in health and disability. She is an Assistant Professor in the Department of Disability and Human Development at the University of Illinois at Chicago (UIC) where she teaches and provides leadership in disability studies curriculum development. She also directs the department's Chicago Center for Disability Research, through which she and colleagues conduct research, training and community service projects in the social sciences, emphasizing a disability studies approach and substantive direction by persons with disabilities at all levels. Since 1998, Dr. Gill has served as the Executive Officer of the Society for Disability Studies. Her research interests include disability identity development, health concerns and health service experiences of women with disabilities, disability bioethical issues and professional training. Her conceptual and research articles have been widely published in both professional journals and in the popular disability press.

Kristi Kirschner, M.D.
Associate Professor of Physical Medicine and Rehabilitation
Feinberg School of Medicine
Northwestern University
Chicago, IL

Director, Center for the Study of Disability Ethics
Rehabilitation Institute of Chicago
Chicago, IL

http://www.ric.org/community/ethics.php

http://www.ric.org/search/kirschner.php

Biography

Kristi L. Kirschner MD is an associate professor of Physical Medicine and Rehabilitation at the Feinberg School of Medicine, and also holds a secondary appointment in the Medical Humanities and Bioethics Program. She is an attending physician at the Rehabilitation Institute of Chicago (RIC), specializing in the care of patients with neurological disabilities. She is the Director of the Center for the Study of Disability Ethics and Medical Director of the Health Resource Center for Women with Disabilities of the Rehabilitation Institute of Chicago. Since 1995 Dr. Kirschner has held the Coleman Foundation Chair in Rehabilitation Medicine, awarded by RIC to support her work in disability ethics and women's health care. Dr. Kirschner's interest in disability ethics grew out of her clinical experiences with the disabled population. During medical school at the University of Chicago, she learned about clinical ethics-- particularly regarding issues at the endings and beginnings of life. – from some of the leaders in the field But her medical school ethics classes did not seem to address the issues she faced almost daily in caring for people with complex, often life (and identity) altering disabilities. In 1994, she returned to the University of Chicago for fellowship training at the MacLean Center for Clinical Medical Ethics and in 1995 created the disability ethics program at RIC. The program was formalized as the Center for the Study of Disability Ethics (CSDE) in 1999.

The CSDE has had an intensive professional development program (the Disability Ethics Scholars Program) for RIC staff since 1997. To date, 40 scholars have participated in the program. In 2002, the CSDE and the University of Illinois at Chicago Department of Disability and Human Development launched a joint certificate in Disability Ethics which is composed of a four course sequence and co-taught by faculty from both institutions. Dr. Kirschner teaches at all levels of the Northwestern medical curriculum, in graduate and continuing medical education programs, and in the Northwestern and genetic counseling program. She is particularly interested in how concepts of disability and quality of life affect medical decision-making. For more information regarding the CSDE, please see www.ric.org/community/ethics.php .

Vilia Tarvydas. Ph.D.
Professor and Program Coordinator of the Graduate Programs in Rehabilitation
Director of the Institute on Ethics in Disability Policy and Rehabilitation Practice
College of Education
The University of Iowa
Iowa City, IA

Research Scientist
Center for Law, Health Policy, & Disability
College of Law
The University of Iowa
Iowa City, IA

http://www.education.uiowa.edu/people/facstaffs/vtarvyda.htm

Biography

Dr. Tarvydas is a professor and program coordinator of the Graduate Programs in Rehabilitation at the University of Iowa. She is Director of the new UI Institute on Ethics in Disability Policy and Rehabilitation Practice in the Colleges of Education and Law. Her scholarly works and numerous national and international presentations have concentrated on the areas of applied ethics, ethical decision-making, and professional standards. She has published extensively in these areas and her most recent textbook (2003) is Ethical and Professional Issues in Counseling that has 3rd edition currently under revision. She teaches graduate level courses on ethics and professional issues at the University of Iowa (UI) at both the master's and doctoral level, where she is also a Senior Research Scientist with the UI College of Law's Center on Law, Health Policy and Disability. She served for eight years on the national certification body Commission on Rehabilitation Counselor Certification, and served as the chair of their Ethics Committee. She also chaired the groups that developed the 1987 unified Code of Ethics for Professional Rehabilitation Counselors and the Scope of Practice for Rehabilitation Counseling, and served as the CRCC liaison member to the CRCC Task Force that drafted the recently revised CRCC Code of Professional Ethics. Some of the recent honors she has received include the 1999 Eda Holt Lifetime Rehabilitation Achievement Award of the Commission on Rehabilitation Counseling, 2001 University of Iowa Collegiate Teacher of the Year, and the 2004 University of Wisconsin Rehabilitation Psychology Varsity Award for Distinguished Alumnus. She currently serves as Chairperson of the Iowa State Board of Behavioral Examiners that licenses mental health counselors and marriage and family therapists. In that capacity, she also chairs the Board's Disciplinary Committee. She has chaired several ethics committees in medical facilities, is currently on the American Counseling Association Ethics Committee, is a member of the current ACA Task Force on Revision of the Code of Ethics, and the American Occupational Therapy Association's Judicial Council.

Ron Amundson, Ph.D.
Professor
Department of Philosophy
University of Hawaii at Hilo
Hilo, HI

Secretary
Disability Rights Hawaii
Hilo, HI

http://www.uhh.hawaii.edu/~ronald/pubs/Amundson-Taira.pdf

http://www.uhh.hawaii.edu/~ronald/

Biography

Ron Amundson is professor of philosophy at the University of Hawaii at Hilo. His doctorate is from the University of Wisconsin. He specializes in history and philosophy of biology

and recently completed a book for Cambridge University Press on the history of the relation between developmental and evolutionary biology.

I had polio in 1952 at the age of 6 years. The immediate effects were relatively minor, a wakened right leg and an oddly shaped foot. Like many polio survivors I was a “passer” for most of my life and didn't think of myself as disabled. Post-Polio Syndrome began to hit me in 1988. It   affected me more than polio had, with weakening and chronic leg pain, and extreme exhaustion in the afternoons. In 1992 I began to use a wheelchair for mobility. This and other lifestyle changes help me to manage the effects of Post-Polio Syndrome. I plan my day carefully, with regular rest periods and very efficient use of travel time. My home and work environment are modified, both for wheelchair accessibility and for the reclining posture that allows me to work without pain. These changes have allowed me to continue to work as a full-time academic.

I am now very well accommodated to my impairments, but at first they were distressing, and it was hard to concentrate on my usual research. Around 1990 I decided to look into philosophical writings on disability. Because I was obsessed with my own increasing disability anyhow, I thought that I could concentrate better by using disability as a research topic. I was amazed to discover that practically no work had been done by philosophers on physical disability.

Adrienne Asch, Ph.D.
Millstein Professor of Bioethics
Wurzweiler School of Social Work
New York, NY

http://www.wellesley.edu/ReproIssues/homepage.html

Biography

Dr. Adrienne Asch who currently holds the Henry R. Luce Professorship in Biology, Ethics and the Politics of Human Reproduction at Wellesley College will join the Wurzweiler faculty in August as Millstein Professor of Bioethics.

  Dr. Asch, a world renowned bioethicist and authority on the rights of the disabled, holds both an MS in Social Work and Ph.D. in Social Psychology from Columbia University. She has served on the New Jersey Commission on Legal and Ethical Problems in the Delivery of Heath Care, as a senior Human Rights Specialist with the New York State Division of Human Rights, as a member of the Social Security Administration's Commission Childhood Disability, and as a consultant to the Secretary's Advisory Committee on Genetic Testing (DHHS). In 2003 she was a Fellow at the Hastings Center and received an Honorary Doctor of Laws Degree from Swarthmore College in 2001.

  She is the author or co-author of numerous books, monographs and articles dealing with reproductive rights, disabilities, and bioethics. While she will be based at Wurzweiler, she will also play an active role at Yeshiva University's Albert Einstein College of Medicine, Benjamin Cardozo School of Law, and Ferkauf Graduate School of Psychology. She will play a key role in the University's evolving Center on Bioethics and Civilization.

Rebecca J. Brashler, L.C.S.W.
Instructor
Physical Medicine and Rehabilitation
Feinberg School of Medicine
Northwestern University
Chicago, IL

Clinical Educator
Center for the Study of Disability Ethics
Rehabilitation Institute of Chicago
Chicago, IL

http://www.medschool.northwestern.edu/depts/pmr/faculty.html

http://www.ric.org/community/ethics.php

Tod Chambers. Ph.D.
Associate Professor of Bioethics and Medical Humanities and of Medicine
Feinberg School of Medicine
Northwestern University
Chicago, IL

http://www.mhb.northwestern.edu/faculty/chambers.htm

Biography

Tod Chambers is Associate Professor of Bioethics and Medical Humanities and of Medicine at Northwestern University 's Feinberg School of Medicine. His areas of research include the rhetoric of bioethics and cross-cultural issues in clinical medicine. He is the author of the book, The Fiction of Bioethics (Routledge) and co-editor of the forthcoming Prozac as a Way of Life (University of North Carolina Press). He is presently working on a second monograph on the rhetoric of bioethics.

His original area of study was storytelling as a ritual activity and he conducted research in Thailand from 1988-1989 and in 1990 on the ritualization of the sacred biography of the Buddha. When he finished his dissertation work in 1992, he began teaching ethics and cross-cultural medicine at Northwestern University's medical school. Since 1996 he has been the unit director of the Ethics and Values course for first year students. For the academic year of 2003-2004, he is a member of the School of Social Science at the Institute for Advanced Study in Princeton, New Jersey. He has served on the editorial boards of the journals Literature and Medicine, Second Opinion, and the American Journal of Bioethics. In 2000-2001, he was co-chair of the annual meeting for the American Society for Bioethics and Humanities (ASBH) and in 2003 was elected to the board of ASBH.

James Charlton, M.A.
Research Assistant Professor
College of Applied Health Sciences
University of Illinois at Chicago
Chicago, IL

http://www.ahs.uic.edu/ahs/php/content.php?sitename=dhd&type=7&id=138

Biography

James Charlton has worked at Access Living as Director of Programs, Executive Vice President and Acting President since 1985. Mr. Charlton was also Mayor Harold Washington's first appointment to the Chicago Transit Authority's Board of Directors. He was a Chicago Community Trust Fellow in 1992 and 1993. He has a graduate degree from the University of Chicago. Jim has written and lectured widely on such diverse topics as independent living, disability rights, energy policy, travel, culture and politics and sports. He has taught Disability Studies at the University of Illinois since 2000. His most recent book Nothing About Us Without Us: Disability Oppression and Empowerment (University of California Press) was published in 1998.

Diane Coleman, J.D .
Former board member, Westside Center for Independent Living

State and national organizer for
Americans Disabled for Attendant Programs Today (ADAPT)

Founder and president of Not Dead Yet, 1996
Forest Park, IL

http://www.notdeadyet.org/docs/drakebio.html

Biography

Diane Coleman obtained her law degree and Masters in Business Administration from the University of California at Los Angeles in 1981 and worked as an attorney for the State of California for seven years. During this time, she also served as a member of the California Attorney General's Commission on Disability. Relocating to Tennessee in 1989, she became Co-Director of the Technology Access Center of Middle Tennessee and served as Policy Analyst for the Tennessee Technology Access Project, funded through the National Institute of Disability and Rehabilitation Research. She served on the Tennessee Advisory Committee to the U.S. Civil Rights Commission and the Advisory Committee to the Tennessee Human Rights Commission.

Coleman is currently the Executive Director of the Progress Center for Independent Living in Forest Park, Illinois, a nonprofit nonresidential consumer-directed center advocating on behalf of people with disabilities. She currently serves as a member of the Illinois State Medicaid Advisory Committee, and is a member of the Board of Directors of the Illinois Campaign for Better Health Care.

Coleman is a person with significant disabilities who has used a motorized wheelchair since the age of eleven. Since 1982, she has served on the governing boards of numerous national, state and local disability-related organizations and policy-related committees, has authored numerous articles on disability-related topics and spoken extensively on topics pertaining to disability rights and health care issues. Beginning in 1987, she volunteered as an organizer for the American Disabled for Attendant Programs Today (ADAPT).

In April, 1996, she founded Not Dead Yet, a national grassroots disability rights organization opposing the legalization of assisted suicide and euthanasia. She has three times presented invited testimony before Committees of the U.S. House of Representatives (April 29, 1996, July 14, 1998 and April 19, 2005). Coleman is a well-known writer and speaker on assisted suicide and euthanasia, and has appeared on Nightline, McLaughlin, The Rolanda Show, The Charles Grodin Show, CBS Up To the Minute, ABC World News Tonight, CNN (Connie Chung, Paula Zahn, Headline News), The Catherine Crier Show, Court TV, CBS Evening News, MSNBC's The Abrahms Report, Fox News The Neil Cavuto Show, Fox and Friends and National Public Radio, as well as local broadcast outlets in several states. She co-authored amicus briefs filed in the U.S. Supreme Court on behalf of Not Dead Yet and ADAPT in the matter of Vacco v. Quill (1996) and in the Conservatorship of the Person of Robert Wendland in the California Supreme Court (2000). In 2003, she joined the adjunct faculty at the University of Illinois at Chicago to co-teach a series of graduate courses in disability and medical ethics.

Stephen Drake, M.S.
Research Analyst
Not Dead Yet
Forest Park, IL

http://www.notdeadyet.org/docs/about.html

http://www.notdeadyet.org/docs/drakebio.html

Biography

Stephen Drake is a person with "invisible" disabilities that are related to a brain injury he experienced at birth. He also feels lucky to have survived the opinion of the attending physician at the time of his birth -- the physician told Drake's parents he'd be better off dead.

In 1980, Drake started work as a teacher's aide in Littleton, CO., which turned out to be the start of ten years as a support worker for children and adults with developmental disabilities in schools, group homes and day treatment centers. He obtained his Master's Degree in Special Education from Syracuse University in 1991. In 1992, he enrolled in the doctoral program at the same university. During his time at Syracuse, Drake worked with the Facilitated Communication Institute and the Center on Human Policy. During that time, he focused his advocacy activities on the internet, designing and maintaining web pages for the Center on Human Policy, the Facilitated Communication Institute, and Not Dead Yet.

During his years at Syracuse, one key event turned his interests and passions toward assisted suicide and euthanasia. In the early 1990s, Robert Latimer, a Canadian farmer who murdered his disabled daughter, Tracy, became a "poster child" for the Canadian pro-assisted suicide groups. Tracy Latimer was not dying and she did not ask to die. In 1996, while growing increasingly alarmed over the "better dead than disabled" rhetoric of the pro-euthanasia movement, he learned of the formation of Not Dead Yet and dropped everything to join its first protest action. In October 1996, he organized his first action -- an "invasion" of a major pro-euthanasia email list, accompanied by 12 other disability activists. This "invasion" has been written up in at least three books, including a scholarly text on rhetoric.

In 1997, Drake's life in academia ended and his life in activism began. He has been a frequent contributor to national newsletters on developmental disabilities. Due to his prolonged efforts in disability advocacy, he is a nationally acknowledged expert on media coverage of disability issues. In 2001, he was a recipient of a Positive Images Award from TASH, a national disability rights organization, for "Exemplary Achievement in Disability Media Coverage and Advancement." Describing himself as a "recovering academic," Drake has published widely inside and outside of the disability community. He is the co-author of a 1998 article in the journal Disability & Society, titled "Disability, Eugenics and the Current Ideology of Segregation: a modern moral tale:" In October 2003, an op-ed he authored on the Terri Schiavo case that was published in over 20 newspapers, including the Los Angeles Times, Tampa Tribune, and Newsday. He has been actively involved in Not Dead Yet since 1996. In addition to his various publications, Drake appeared on 60 Minutes II as a representative of Not Dead Yet in their profile of bioethicist Peter Singer. He's also appeared on MSNBC, Democracy Now, and the News Hour with Jim Lehrer on related issues.

Lisa I. Iezzoni, M.Sc., M.D.
Professor of Medicine
Harvard Medical School
Boston, MA

Co-Director of Research
Division of General Medicine and Primary Care
Department of Medicine
Beth Israel Deaconess Medical Center
Boston, MA

http://rwjcsp.stanford.edu/NAC/NAC_iezzoni.html

Biography

Lisa I. Iezzoni is Professor of Medicine at Harvard Medical School and Co-Director of Research in the Division of General Medicine and Primary Care, Department of Medicine, at Beth Israel Deaconess Medical Center in Boston. She received her degrees in medicine and health policy and management from Harvard University.

Dr. Iezzoni has conducted numerous studies for the Agency for Healthcare Research and Quality, the Medicare agency, and private foundations on a variety of topics, including evaluating methods for predicting costs, clinical outcomes, and substandard quality of care. She has published and spoken widely on risk adjustment and has edited a textbook, now in its third edition (2003), on risk adjustment for measuring health care outcomes. A 1996 recipient of the Investigator Award in Health Policy Research from The Robert Wood Johnson Foundation, she is studying health policy issues relating to persons with disabilities.

Dr. Iezzoni is a member of the Institute of Medicine in the National Academy of Sciences, serves on the editorial boards of major medical and health services research journals, and is on the Board of Directors of the National Quality Forum. Her book When Walking Fails was published in the spring 2003.

Sunil Kothari, M.D.
Assistant Professor
Baylor College of Medicine
The Institute for Rehabilitation and Research
Houston, TX

http://www.bcm.edu/pm&r/generalsrvcs/faculty/kothari.html

Biography

Medical School: University of Texas Health Science Center-Houston, Houston, Texas, 1995
Graduate School: Master of Arts in Philosophy, University of Texas, Austin, Texas, 1991
Internship: University of Texas Health Science Center-Houston, Houston, Texas
Residency: Northwestern University Medical School, Chicago, Illinois
Fellowship: Brain Injury Rehabilitation, Baylor College of Medicine, Houston, Texas

Board Certification: American Board of PM&R

Sub-Specialty: Traumatic Brain Injury
Clinical Interests: Brain Injury, Stroke Rehabilitation
Research Interest: Brain Injury

Significant Professional Activities

Texas Brain Injury Association
Board of Directors
Professional of the Year
American Congress of Rehabilitation Medicine
Chair, Brain Injury SIG Task Force on Prognostication after TBI  

Debjani Mukherjee, Ph.D.
Assistant Professor
Center for the Study of Disability Ethics,
Rehabilitation Institute of Chicago, Northwestern University
Chicago, IL

http://www.ric.org/community/ethics.php

Biography

On January 3, 2004, Debjani Mukherjee, Ph.D., joined the Center for the Study of Disability Ethics' staff. She received her Ph.D. in Psychology from the University of Illinois at Urbana-Champaign and completed a fellowship at the University of Chicago's MacLean Center for Clinical Ethics. Dr. Mukherjee has an interest in traumatic brain injury and her Ph.D. thesis was entitled, “Multiple Perspectives, One Decision: An ethnographic study of life support withdrawal after severe traumatic brain injury”. While studying Ethics at the University of Chicago, she also provided clinical ethics consults for the Oak Forest Hospital of Cook County. For the past year, Dr. Mukherjee has been living in Paris and was a coconsultant in Ethics at the Centre d'Ethique Clinique at Hopital Cochin.

Corbett O'Toole
Instructor
University of California, Berkeley
Berkeley, CA

Director
Disabled Women's Alliance
Berkeley, CA

http://bancroft.berkeley.edu/collections/drilm/collection/items/otoole.html

http://www.disabilityhistory.org/dwa/library_k.html#otoole

Biography

Corbett Joan O'Toole is a longtime, internationally influential disability rights activist, a writer, filmmaker and director of the Disabled Women's Alliance, which focuses on networking and advocacy for women with disabilities around the world. Corbett is the designer of the Disabled Women's Alliance website as well as an internationally recognized leader on transgressive voices within disability particularly disabled women, disabled parents and disabled queers. She loves to organize gatherings, create networks and publish frequently on these subjects.

Corbett is one of the founding mothers of the national and international disabled women's movement. She has also been part of the living history of the disability movement in the United States, working on the staffs of the first Center for Independent Living (Berkeley) and the Disability Rights Education and Defense Fund, as well as other ground-breaking activities.

Corbett has been involved, sometimes single-handedly, in organizing countless landmark conferences that have made a difference in the lives of women and girls with disabilities. These have included the Disabled Women's Symposium, which preceded the Fourth World Conference on Women in Beijing (1995); International Conferences on Parents with Disabilities and Their Families (1997; 2002); Funding All Women: Including Women and Girls with Disabilities (1999); and the world's first conference on being Queer and Disabled (2002). She also organized a first-ever briefing for California state legislators on issues of girls and young women with disabilities, in collaboration with the Center for Women Policy Studies (2003).

Corbett's creativity extends into media and she has conceived, written and directed several short documentaries about disabled women's experiences with parenting, mentoring, relationships, abuse and violence. A prolific writer, Corbett's works appear in numerous books and such prestigious journals as Journal of Lesbian Studies, Peabody Journal of Education, Disability Studies Quarterly, and Disability World.

Corbett is also committed to strengthening bonds between the women's and disability communities, working, for example, with the Astraea Foundation, the San Francisco Women's Foundation, Women and Philanthropy and the Center for Women Policy Studies.

Teresa A. Savage, R.N., Ph.D.
Research Assistant Professor
Department of Maternal-Child Nursing
University of Illinois at Chicago
College of Nursing
Chicago, IL

Associate Director
Center for the Study of Disability Ethics
Rehabilitation Institute of Chicago
Chicago, IL

http://www.ric.org/community/ethics.php

http://www.uic.edu/nursing/facultypages/Teresa_Savage.htm

Biography

Dr. Savage is a research assistant professor in the Department of Maternal-Child Nursing. She joined the UIC faculty in 1999. Dr. Savage conducted a qualitative study to describe factors influencing parents in their decision-making regarding life-sustaining treatment for children with severe and profound disabilities during her post-doctoral fellowship. The findings supported her earlier findings from her dissertation on how nurses facilitate decision-making by patients, as well as added new information regarding parental decision-making. She also conducted a study regarding current practices in obtaining informed consent from people with intellectual disabilities. As a co-investigator, she will work with Dr. Kavanaugh on her NIH funded study to explore life support decisions for extremely premature infants.

A frequent guest lecture, Dr. Savage lectures and facilitates discussions on ethical decision-making by nurses. Building on current curricular content, Dr. Savage moves the students to the next level of ethical inquiry in addressing the pertinent issues in the selected topic. For other courses, she also lectures on neurological assessment of children and adults.

Dr. Savage shares her time between her faculty research position at UIC CON and as the Associate Director of the Center for the Study of Disability Ethics at the Rehabilitation Institute of Chicago (RIC). There she teaches in the Disability Ethics Scholars program, mentors scholars, medical students, externs, and others on their individual projects, spearheads special projects, and contributes to the other work of the Center. Additionally, she and a colleague from Rush University College of Nursing are writing a textbook on ethics for use by clinical instructors in the undergraduate nursing practica, to be published by Lippincott in February 2006.

Marsha Saxton, Ph.D.
Researcher
World Institute on Disability
Oakland, CA 94612
Voice: 510-763-4100
TTY: 510-208-9493
marsax@wid.org

Lecturer
UC Berkeley Disability Studies Program

www.wid.org

Biography
Marsha Saxton, Ph.D. teaches Disability Studies at the University of
California, Berkeley, and works as a researcher and policy analyst at the
World Institute on Disability, in Oakland, CA, with special interests and
over one hundred publications in Disability Studies, women's health issues,
genetic technologies and Personal Assistance Services. She has been a board
member of the Our Bodies, Ourselves collective and served on the Council for
Responsible Genetics, and the National Institutes of Health (NIH) Ethical,
Legal Social Implications (ELSI) Working Group of the Human Genome
Initiative.