HSSP 192B: Sociology of Disability, Spring 2017
BRANDEIS UNIVERSITY
Health: Science, Society and Policy
HSSP 192B: Sociology of Disability, Spring 2017
Tuesdays, 2:00-4:50 p.m.
Instructor: Stephen Gulley, Ph.D., MSW
Meetings by appointment:
Purpose of the Course: In the 21st century, disability has emerged as an important social-political-economic-medical issue, with its own distinct history. This history has been characterized as a shift from “good will” to “civil rights.” This course examines the epidemiology of disability across the life span, major contemporary theoretical approaches to the study of disability in modern society, comparative experiences of individuals with different types of disabilities, significant policy initiatives in the last 40 years to extend civil rights to persons with disabilities, and the implications of the disability rights and self-advocacy movements.
Requirements of the Course: The course requires a take-home mid-term essay exam (contributing 30% to the final grade), a media review (contributing 20% to the final grade), an 8-10 page term paper (contributing 30% to the final grade), and in-class participation (contributing 20% to the final grade). Success in this four credit course is based on the expectation that students will spend a minimum of 9 hours of study time per week in preparation for class (readings, research, papers, etc.).
Course Reading:
Books available at the campus bookstore:
Beck, M. (1999). Expecting Adam. New York: Times Books.
Berger, R (2013). Introducing disability studies. Boulder, CO: Lynne Rienner Publishers, Inc.
D’Antonio, M. (2004). The State Boys Rebellion. New York: Simon & Schuster paperbacks.
Hockenberry, J. (1996) Moving Violations: War zones, wheelchairs, and declarations of independence.
Switzer, J. (2003) Disabled Rights: American disability policy and the fight for equality. Washington, D.C.: Georgetown University Press.
Thompson, T. (1996). The Beast: A journey through depression. New York: Plume. (Out of print, we will make sufficient copies available).
These books are available through the Brandeis bookstore and some are available in electronic format as well. All other readings (journal articles, etc.), assignments, powerpoint slides and handouts are distributed over LATTE.
Note: If you are a student with a documented disability on record at Brandeis University and wish to have a reasonable accommodation made for you in this class, please see me immediately.
Learning Goals
Historically, the study of disability was the province of medical and rehabilitation professionals. In many ways, it still is. For both the public health and the well-being of persons with disabilities, it remains important to contain the spread of disease or injuries when possible, to limit the extent of functional impairments, and to assist affected individuals to best utilize their abilities.
That noted, disability is, and always has been, an inherent part of the human experience. It transcends medical pathology and shapes the “doing” of our lives, in school, in work and at play. It colors the language we use and the ways we think about human difference. It steers many choices we make in public policy, drives the ways we allocate resources, and influences how and for whom we construct our environment. It binds us together in families and communities as we care and advocate for one another. It is a part of our culture, from the books we read to the movies we watch. Disability is a rich biopsychosocial phenomenon, ripe for our study from many perspectives.
Together, we will analyze disability at three inter-related levels in this class: the micro, the mezzo and the macro. While disability studies is too broad a field for us to cover fully in a single semester, I will aim to equip you with the basic tools and knowledge you need to think critically about disability issues at each of these societal levels. By the end of the semester, you will:
At the micro level:
- Raise your consciousness of the effects of stereotyping on the lives of individuals with physical, developmental and psychological disabilities.
- Critically assess dominant mainstream values (youth, beauty, athleticism, wealth, etc.) with an eye to how these may culturally invalidate the lived experiences of persons with disabilities.
- Meet a variety of people with disabilities in person (and through their writings) to learn more about their actual lived experiences. While no one person can ever hope to speak for all those with disabilities (nor can one person speak for all people with their disability), each of us has a unique narrative worth consideration.
At the mezzo level:
- Learn and apply a variety of social, psychological and political-economic theories of disability in order to better understand how it is socially constructed, how communities react to disability, and how it is currently embedded in our culture.
- Further your knowledge of several social movements at work around chronic medical conditions and disabilities in the United States, with an understanding of how each one frames the issues, captures the public interest and effects social change.
- Thoughtfully analyze several ethical dilemmas (such as prenatal testing and cochlear implants) which arise out of the tension between medical and social understandings of disability.
At the macro level:
- Be able to compare, contrast and apply major theories of disability, such as the medical model, the social / minority model, and the person-in-environment framework.
- Know the major agreements and disagreements over the possible definitions of disability in this field and analyze / critique statistics on disability accordingly.
- Be ready to explain key aspects of disability history to your colleagues, from the birth of the independent living movement, to the conflicts over institutionalization / de-institutionalization, to the passage of the Americans with Disabilities Act (ADA), and more.
- Develop a working knowledge of the most important policies and programs which serve people with disabilities such as Social Security (SSI/SSDI), Medicare & Medicaid, and the Individuals with Disabilities Education Act (IDEA).
And most of all:
When we complete our semester together, I hope you will find yourself wanting to continue on in your studies of disability.
Course Outline
January 17th Introductions and tribute to Irv Zola
January 24th Human difference and the power to define: stereotypes, myths and misconceptions about people with disabilities.
Media review assignment distributed
January 31st Definitions and epidemiology of disability
February 3rd Media review due by 8pm (submit your work to Latte dropbox)
February 7th Theorizing disability: A toolbag of sociological, psychological and political frameworks for organizing our thoughts.
February 14th Historical treatment of people with ID or DD
February 21st No Class: midterm break
February 27thTake home midterm available on LATTE
February 28th Living well with a developmental disability
March 6th Take home midterm exam is due by 8pm. Submit your work to Latte dropbox.
March 7th Ethical dilemmas and disability I: Choosing disability
March 14th The disability rights movement(s)
Begin formulating your term paper topic this week.
March 21st Public policy: Defining the safety net and basic rights in education,
income maintenance, employment, and health care
March 28th Ethical dilemmas and disability II: The case of deafness
April 3rd Short description of term paper topic due via email (no attachments) by 8 pm
April 4th Living well with chronic conditions or physical impairment
April 25th Living well with mental illness
May 2nd Summing up
May 3rd Final paper due by 8PM (submit over LATTE)
Readings and assignments (complete by date shown)
Jan 17A tribute to Irv Zola and introduction to the course
Please browse the links in LATTE dedicated to Irv and acquaint yourself with the assignments and readings for the semester.
Jan 24Human difference and the power to define: stereotypes, myths and misconceptions about people with disabilities.
Berger, R. (2013). Introducing disability studies. Disability in Society (Chapter 1, pp 1-15 only).
Switzer, J (2003) Disabled Rights: History of segregation and stereotypes, (Chapter 2, pp 30-43).
Wahl, Otto (1999) Telling is Risky Business: Mental health consumers confront stigma. pp 11-26 and pp 43-60.
Daniels, Lisa (2004). ‘The Right Word:’ People-First Language and Person-Centered Conceptions of Disability. Final paper submitted for HSSP 192b (!!). pp 1-11.
Batts, V. (1998). Modern Racism: New melody for the same old tunes. Cambridge MA: Episcopal Divinity School, pp 1-14.
Media review assignment distributed over Latte. Due Friday, February 3rd
Jan 31Definitions and epidemiology of disability
Zola, I.K. (1993). Disability statistics, what we count, and what it tells us. Journal of Disability Policy Studies, 4, 9-38.
Hahn, H. (1993). The political implications of disability definitions and data. Journal of Disability Policy Studies, 4, 41-52.
Batavia, A. (1993). Relating disability policy to broader public policy: Understanding the concept of handicap. Policy Studies Journal, 21, 735-739.
Rolland, J. (1994) Families, illness, and disability. New York: Basic Books. Chapter 2 (pp. 22-32 only), Chapter 3 (pp.43-49, only) & Chapter 6 (pp. 101-108, only).
Gulley, SP, Rasch, EK & Chan, L (2011). The Complex Web of Health:
Relationships Among Chronic Conditions, Disability, and Health Services. Public Health Reports, 126, pp 495-506. Note: Do not sweat the heavy statistics in this article. Read it for the overall points raised!
Feb 3 Media review due by 8pm, submit over Latte dropbox.
Feb 7 Theorizing disability: A toolbag of sociological, psychological and political frameworks for organizing our thoughts.
Berger, R. (2013). Introducing disability studies. Explaining disability (Chapter 2, pp 25-49).
Olkin, R. & Pledger, C. (2003). Can disability studies and psychology join hands? American psychologist 58(4), pp 296-303.
Minow, M. (1990). Making all the difference. Ithica, NY: Cornell University Press. Chapter 1 (pp. 19-48).
Gill, C. (2001). Divided understandings: The social experience of disability. In Albrecht, G., Seelman, K. & Bury, M. (Eds) Handbook of Disability Studies (pp 351-372)
Feb 14Historical treatment of persons with cognitive or developmental disabilities
Berger, R. (2013). Introducing disability studies. History and law (Chapter 3, pp 51-62 only).
D’Antonio, M. (2004). The state boys rebellion. New York: Simon & Schuster paperbacks. Please read: Foreword and chapters 1-4; Chapter 6; Photo inserts staring on page 183; PP 212 – 215 (Last three pages of Chapter 9); Chapters 11, 12 and afterword.
Feb 21No Class (midterm recess)
Feb 27Take home midterm questions are now available on Latte. Midterm is due on Monday, March 6th by 8pm (via drop box on Latte).
Feb 28 Living well with a developmental or intellectual disability
Beck, M. (1999). Expecting Adam. New York: Times Books.
Mar 6 Your midterm is due by 8pm (submit over LATTE)
Mar 7 Ethical dilemmas and disability I: Choosing disability
Berger, R. (2013). Introducing disability studies. The Family and Childhood (Chapter 4, pp 79-89 only).
Shevelyova, A. (2008). Prenatal Testing: Eugenics, Choice, and Disability Rights. Final Term Paper for Sociology of Disability, Brandeis University.
Asch, A. (2001). Disability, bioethics and human rights. In Albrecht, G., Seelman, K. & Bury, M. (eds) Handbook of Disability Studies, pp 297-326.
McBRYDE-JOHNSON, Harriet (2003). Unspeakable Conversations. (New York Times article)
Mar 14 The Disability Rights Movement(s)
Berger, R. (2013). Introducing disability studies. Disability in society (Chapter 1, pp 15-22 only)
Shapiro, J. (1995). No pity. Chapters 2 “From Charity to Independent Living”; 3 “The Deaf Celebration of Separate Culture” & 4 “A Hidden Army for Civil Rights”.
Switzer, J (2003) Disabled Rights: Chapter 4: “Social and Political Activism”
Please begin formulating your term paper topic this week. A one page write up is due on April 3rd by 8pm. Please submit as a plain text email (no attachments) to
Instructions for the paper and a memo on term paper writing can be found on Latte. PLEASE read both in full! The paper will be due on May 3rd by 8pm. Thanks!
Mar 21Public policy responses: Defining the safety net and basic rights in education,
income maintenance, employment and health care
Berger, R. (2013). Introducing disability studies. History and law (Chapter 3, pp 62-77 only).
Switzer, J (2003) Disabled Rights: Chapters 3 “Compensation and Rehabilitation”; 6 “The ADA as Policy” (pp112-115; 128-143 only); 7 “Policy Hot Buttons”; and 8 “Status report on Equality”.
Additional readings / resources available on Latte (not required).
Mar 28 Ethical dilemmas and disability II: The case of deafness
Lane, H (2002). Do Deaf people have a disability? Sign language studies 2(4), pp 356-376.
National Association of the Deaf (2000). Position statement on cochlear implants.
Apr 3Short description of term paper topic due via email by 8 pm. Plain text only, no attachments, to:
Apr 4 Living well with chronic conditions or physical impairment
Berger, R. (2013). Introducing disability studies. The bodily experience of disability (Chapter 6, pp 145- 176).
Hockenberry, J. Moving Violations. Please read the following stanzas:
1 (Walking with the Kurds)
2 (Gravity's child)
3 (A farewell to arms)
4 (The cutting board)
6 (Bye bike!)
7 (Fear of bees)
11 (Roll model)
13 (Real job)
Apr 11 & 18No Class (Spring break)
Apr 25Living well with mental illness
Thompson, T (1996). The beast: a journey through depression. New York: Plume. (all)
Additional resources and readings available on latte (not required)
May 2 Summing Up
Berger, R. (2013). Introducing disability studies. The future of disability (Chapter 8, pp 209-229).
May 3 Final paper due by 8PM (Submit your work through Latte dropbox)
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