Introduction to Disability Studies

Course Description
This course explores personal and societal conceptualizations of disability and chronic illness, emphasizing U.S. culture. We will investigate various contrasting perspectives and policies regarding disability, including bioethics, the "medical model", the rehabilitation perspective, the "disability paradigm" or civil rights perspective, and personal narratives of people with disabilities. Through readings, lectures, films, guest presentations, assignments and group discussions, students will learn about Disability Studies in the context of timely issues such as the medical and insurance systems, employment, personal assistance services, genetic screening, gender, race, AIDS and HIV, and civil rights statutes. Students will gain familiarity with disability organizations, services and policies, and analyze cultural attitudes and practices regarding disabled people.

Required Readings: there are four texts:

Shapiro, Joseph, (1994) No Pity; People with Disabilities Forging a New Civil Rights Movement. NY: Random House. (ISBN 0-8129-2412-6 paperback)

Linton, Simi, (1998) Claiming Disability: Knowledge and Identity. New York University Press.
(ISBN 0-8147-5134-2 paperback)

The Reader acquaints students with a selection of disability literature with articles from recent and historic scholarly journals, personal narrative, general and disability community popular media. For sale at Copygraphik, 2282 Fulton, Berkeley, 843-5251, across from Athletic Ticket Office.

Choose one of the following books:
One of Us; Conjoined Twins and the Future of Normal by Alice Domurat Dreger (2004) Harvard Univ. Press. (about the life experience and surgical separation of conjoined twins)

Life As We Know It; A Father, a Family and an Exceptional Child, by Michael Berube (1996) Pantheon (about the issues of prenatal testing, and raising a child with Down Syndrome)

Do You Remember Me? A Father, a Daughter, and A Search for the Self, By Judith Levine (2004) Free Press (about Alzheimer’s Disease and family versus institutional care for people with dementia)

The Spirit Catches You and You Fall Down, A Hmong Child, Her American Doctors, and the Collision of Two Cultures, by Anne Fadiman (1997) Farrar, Straus and Giroux (about conflicting cross-cultural views of medical intervention for epilepsy)

The Mask of Benevolence, Disabling the Deaf Community Random House, 1995, updated edition, by Harlan Lane (about American Sign Language, education of Deaf people and the controversy about cochlear implants.)

Elegy for a Disease: A Personal and Cultural History of Polio by Anne Finger, St. Martin’s 2006, (about the polio epidemic in the U.S. and family and disability issues.)

Assignments and Course Requirements
Course participation includes attending lectures and small group discussions, and completing written assignments including journals, discussion questions, tests, a class presentation or paper. You learn in this course by integrating new information and re-evaluating previous personal and intellectual belief systems and assumptions. Facts, dates, definitions, and so forth can be memorized but then forgotten. If new information is integrated in your thinking, it endures. The assignments challenge you to articulate this integration and re-evaluation process

Journal
For the first six weeks of class, keep a journal, typed, single-spaced please, of your own thoughts, feelings and questions in response to the class discussions, readings, movies, speakers, and assignments. Include questions that arose for you in reading the texts.

Personal disclosure of disability is not at all required or expected. Journals will not be returned so please keep your own copy. Your journal entries can be about one single-spaced page per week. The journal must be kept up weekly or it is not an effective learning tool. Submit one page of your ongoing journal every week (as indicated in the syllabus calendar.) All six of these journal entries must be submitted by mid-semester as indicated on the schedule. They will not be accepted after this date.

For the first journal submission (due the second week) write a brief summary of your familiarity with disability issues, as a baseline for assessing your learning in this course. Describe how disability is or might be relevant to the population of individuals you anticipate working with in your life or career. (If you have a disability, you are not required to disclose this if you choose not to!) Then generate a few specific learning goals for yourself in this course. The rest of the journals can be on any course-related topics that capture your interest. Explore and discuss how these topics relate to other issues in the media or your personal or work goals, or offer your own analysis. These journals allow me to get to know you and help me plan class. See schedule for due dates.

Discussion Questions
Mid-semester, when midterms and other assignments become due, your journals entries will not be required (though you are encouraged to continue.) Instead, submit one or two discussion questions per week that arise from the readings. These discussion questions give me feedback on your thinking and also help inform our class discussions.

Final Course Reflections
The last assignment of the semester is to be a brief summary of your learning in this course, using Journal Submission One and your other assignments and journal entries to analyze your own progress in learning and understanding disability issues. Include goals for your future learning about disability beyond this course. This is due on the last day of class.

Tests: Midterms and Final
There will be two midterms and a final, in-class or take-home TBA, short answer and essay questions, on key concepts discussed in class and in the readings, dates as indicated scheduled.


Bioethics of Disability Book Assignment
Choose one of the books indicated on page one of the syllabus by Week 4, and read it by Week 7. You will meet with other students in the class who have also chosen your book title, to discuss your reactions and develop your analysis, and begin your preparation for the panel presentation (or paper) later in the semester.

This assignment has a CHOICE:
a.) Work in a team of four or more students to prepare a presentation, or
b.) Write a 6 to 10 page review of the book. The papers and the presentations must include the following elements:

1.) The Problem. Illuminate the central bioethical question(s) posed in this book.
Example, (discussed in Shapiro’s No Pity) “Should severely disabled people be granted legally assisted suicide?

2.) Background. Briefly identify pertinent life circumstances for people with the disabilities or conditions, as well as for their families (raising for example, disability and/or health circumstances, economic resource, independence or care giving needs, stigma, etc.) framed in the book as the basis for the ethical dilemmas. If appropriate, you may use a few other (cited) sources besides the book for this section.

Using an example from Shapiro: You would describe Larry McCafee’s disability and life circumstances with difficulty accessing services, benefits, housing, living in nursing homes, etc.

3.) Analysis of the Issues. Articulate the differing aspects to the debate, as described in the book, giving several supportive arguments. Briefly state the principals underlying the value systems (such as the charity, medical or rehabilitation model, independent living model or disability paradigm, or Linton’s models in her Chapter 3) of each side. In a bioethical analysis, a “well-argued” position makes a clear, logical, well-documented case for a given perspective. Reference your analysis using cited readings from our course. Papers should evaluate features of the book’s effectiveness in describing the debate. Comment on the use of personal narrative, if applicable.

Example with assisted suicide: Describe and develop: View one, the charity model, “Disabled people should not have to suffer from their emotional and physical pain, and therefore deserve legalized medical assistance to die and end their misery.” Contrast this with view two, disability rights/independent living model “Disabled people are encouraged by society to die because of eugenic ideology and discriminatory policies, and instead deserve entitled services and support to live in the community.”

In addition, you may elect to a.) state your own views on the debate, giving reasons for your position, and b.) describing the underlying values that support your views. You might also offer your own recommendations for public policy, and/or increasing the public’s clarity on this issue through public education or other means. You are encouraged to consider arguing an unpopular position just for the pleasure of making a well-argued perspective!

Presentations
Those who chose to will work with teams to make presentations in class, to explore the issues and educate students who have not yet read the book you chose. Students must work together in groups of at least four. (A crucial part of this assignment is to get you to work together!) Your presentation will represent the controversial issues raised in your chosen book. You may present the issues in a scholarly or creative manner of your choice, but you must clear it with me first, either in writing or in a meeting with your team and myself. Examples could include a panel format, a debate, or a dramatization. Presentations are expected to be high quality, thus should be rehearsed and timed (and edited!) to no longer than forty minutes, including at least ten minutes for questions and discussion with the rest of the class. Presenting teams must submit a one-page bulleted outline addressing points 1.) to 3.) above, due at the time of their presentation date.

The paper-writing option is for students who cannot meet with groups, or really aren’t comfortable making a class presentation. The group project is recommended as easier and more fun! Some students won’t chose that, so the paper option is acceptable.

Timeliness is important! For those writing papers, points will be taken off for lateness. Similarly, presenters who are not ready for their scheduled date will lose points.

Other Course Requirements

Active Participation in Class
Active participation means a combination of all of the following: sharing ideas in class discussion and small groups, making an effort to interact with other students to support their learning, being in contact with the teacher and students to share references and information, and regular attendance. Attendance will be taken.

Consultation
Office hours for consultation will be announced. Please feel free to contact the instructor if you have questions between classes. Dr. Saxton can be reached at 510-251-4349 or marsax@wid.org.

Policy on Letters of Recommendation
A minimum of two weeks notice is required for requests of Letters of Recommendation from Dr. Saxton. No last minute requests can be honored. Students must have made sufficient individual contact with Dr. Saxton, beyond class discussion, through individual and small group discussion, to enable a meaningful recommendation.

Absences
Attendance will be taken in this class. Students are expected to notify the instructor if they miss a class, preferably before, and are responsible for obtaining handouts and reading assignments for missed classes. Students are encouraged to be in contact with at least one other student "buddy" in class to keep up in case of absence. Keep your own copy of each assignment for your records.

Grading
The course grade will be based on: completed journals, (15 points) discussion questions (10 points) the first midterm, (15 points) The second midterm (20 points) the paper or class presentation, (10 points) the final, (20 points) class participation and attendance (10 points) for a total of 100 points. An A grade requires enthusiastic and rigorous participation and clear demonstration of your learning in the course. Points are lost for lateness.





Grading and Points Criteria
College-level writing requires clear expression of your thinking and learning. English Department colleagues remind faculty from other departments that we are not doing students any favors if we don’t reinforce college-level writing standards.

The purpose of tests and assignments is to challenge the student to reveal his or her learning and thinking about the coursework.

Points
• Points are given for answers which fully address the questions.

• Points are subtracted if student writing only partially responds to the assignment, for example, does not include examples or discussion, as requested.

• Points are subtracted for serious language or writing errors.

• A few run-on sentences, punctuation errors, misspelling, slang, etc. are understandable, for an in-class test with time pressure. If there are many of these kinds of errors, points will be lost, especially if these errors interfere with intelligibility or meaning. For take-home tests and papers, students have adequate time to proofread their writing.

• Points are taken off for unclear, ambiguous wording, and for confusing or fragmented sentence structure which obscures meaning. If wording and sentence structure interfere with meaning, answers obscure the student’s learning and thinking.

• Reference material should be cited correctly and completely. For papers, points are taken for incomplete references to cited or quoted material.

Include high-level writing standards in your planning for assignments. Please proofread your writing. Consider sharing proofreading with other students before you submit your assignments. Use writer’s guides, such as Strunk and White. Many writing resources are available on the web and in the libraries. Tutoring is available at the Learning Center.

Note on Accommodation
Students with any reasonable request for accommodation related to disability, illness, childcare, work conflicts, or circumstances affecting learning or class participation should speak with the instructor. Accommodation to disability in an educational setting provides disabled students with a reasonable degree of additional resources, time or assistance to enable access to learning and campus resources that are otherwise available to all students. Requests for an accommodation must be made at the beginning of the semester.

If you want to request accommodations it is your responsibility to contact the Disabled Student Program, identify your disability and request assistance.

Auditors
Auditors are welcome depending on space, must attend regularly and keep up with all readings. Auditors are not invited to drop in occasionally when they have time. Please see the instructor.

Reader Contents

Course Description

Topics and Readings Schedule

Golub, Edward, (1994) “Framing Health and Disease” in The Limits of Medicine: How Science Shapes our Hope for the Cure New York: Random House.

Lane, Harlan (1997) “The Construction of Deafness” The Disability Studies Reader New York: Routledge.

World Institute on Disability Language Guidelines

Names for a Child with a Disability, Susan Fitzmaurice
Young, Iris Marion 1990 “Five Faces of Oppression” Justice and the Politics of Difference. NJ: Princeton University Press.

Mason, Micheline, (2000) “Eugenics Shapes Our Thinking” Incurably Human, London: Working Press.

The Nation;” Davis' Apology Sheds No Light on Sterilizations in California

Wolfe, Kathi (1996) “Heroes and Holy Innocents: In portraying disabled people, Hollywood hasn’t got a clue” Utne Reader January-February

Zola, Irving Kenneth (1985) “Depictions of Disability-Metaphor, Message and Medium in the Media: A Research and Political Agenda” The Social Science Journal Vol.22/ No.4

Hanna, Wm. and Elizabeth Rogovsky. (1993) “On the Situation of African-American Women with Physical Disabilities.” Perspective on Disability, Nagler, Mark, (ed.) Health Markets Press.

Stein, Lisa, (2005) “Artist Depicts the Disabled with No Punches Pulled”

DeJong, Gerben. (1983) “Defining and Implementing the Independent Living Concept” Independent Living for Physically Disabled People. Nancy Crewe and Irving Zola, eds. San Francisco: Jossey-Bass Publishers.

Saxton, Marsha, (2002) “Caring for Pay: Now They Have to Treat Us with Respect” World Institute on Disability.

AARP “Disabled Seniors Face Grim Times”

Saxton, Marsha (2005) “Caring for Aunt Alice “ Journal of Disability Policy Studies

Winzer, Margaret A. (1997) “Disability and Society Before the Eighteenth Century: Dread and Despair” The Disability Studies Reader New York: Routledge.

U.S. Department of Justice, Civil Rights Division, A Guide to Disability Rights Laws.

“The Americans with Disabilities Act: Questions and Answers” ADA Handbook

"Amputee Sprinter, Is He Disabled or Too-Abled?" New York Times

Shapiro, Susan (1984) “Mental Patients’ Liberation Front: Seeking Control” Sojourner: The Women’s Forum February ‘84

“Prozac or Protest? Activism as an Antidate to Depression, An Interview with Harilyn Rousso. The Women’s Center at Premier Healthcare. Spring/Summer 2006.

Rosa, Chris, (2000) MDA Quest “ADA Reaches 10th Anniversary Amid Criticism and Praise”

The Olmstead Decision; Letter to State Medicaid directors from the federal Medicaid director

Mason, Micheline (1995) “The Breaking of Relationships” Present Time, January ’95.

Shakespeare, Tom, Gillespie-Sells, Kath and Dominic Davies (1996) “Double the Trouble” The Sexual Politics of Disability: Untold Desires. London: Cassell.

O’Brien, “Unlikely Alliances: Friendships and People with Developmental Disabilities” in Amado, ’93 Friendships and Community Connections between People with and without Developmental Disabilities. Paul Brooks

Harden, Tracy, “Raising Ross”

O’Neil, John, “The College Hunt”

Saxton, Marsha (1998) “Disability Rights and Selective Abortion” Abortion Wars: A Half Century of Struggle, 1950-2000. Rickie Solinger, (ed.) Berkeley: University of California Press.

Kelly, John, (1999) “The Disabled Need Assistance, Not an Escape” Boston Globe.

Corbet, Barry: “Physician Assisted Death: Are We Asking the Right Questions? New Mobility 2003

Terri Schiavo articles

Pillow Angel articles: Rebecca Clarren, “Behind the Pillow Angel” and
McDonald, “The Other Story From a Pillow Angel, Been There.”

Frankly, Unabashedly Disabled, New York Times

Disability-Related Websites

Local Organizations

Recommended Readings—Biographies and Autobiographies