DISABILITY PRIDE
The Interrelationship of Self-Worth, Self-Empowerment, and Disability Culture

by

June Isaacson Kailes

a publication of the
ILRU Research & Training Center on Independent Living at TIRR

(-)1993 by

ILRU Program
2323 S. Shepherd, Suite 1000
Houston, TX 77019
(713) 520-0232. 520-5136 (TDD)

ILRU PUBLICATION PRODUCTION TEAM:  Dawn Heinsohn

All publications are also available on standard-size audio cassette for people with visual impairment.

Substantial support for development of this publication was provided by the Rehabilitation Services Administration and the National Institute on Disability and Rehabilitation Research, U.S. Department of Education. The content is the responsibility of ILRU, and no official endorsement of the Department of Education should be inferred.

ILRU is a program of TIRR, a nationally recognized, free-standing rehabilitation facility for persons with physical disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living.

TABLE OF CONTENTS

INTRODUCTION
GENERAL OVERVIEW TO `DISABILITY PRIDE'

SESSION I:  The Role Disability Stereotypes Play in the Development of Self-Worth
OVERVIEW
EXERCISE 1: Identification of Stereotypes Associated with Disability
		   Handout:  "List Of Common Stereotypes"
EXERCISE 2:  How Have Disability Stereotypes Affected You?
EXERCISE 3:  What To Do About Disability Stereotypes?
	        Handout:  "What Is Your Role?"
EXERCISE 4:  Strengths That Result From Living with Disability 
EXERCISE 5:  The `Built Environment' Often Causes the Real
EXERCISE 6:  Self-Worth and the Role of Stereotypes 

SESSION II:  Language as an Element of Disability Pride and Culture OVERVIEW 
EXERCISE 1:  Value Laden Language
EXERCISE 2:  Language Issues
	        Handout:  Language Quiz
	        Handout:  Answers to Language Quiz
EXERCISE 3:  Subculture Language 
EXERCISE 4:  What Should People with Disabilities Call Themselves?
EXERCISE 5:  The Importance of Language

SESSION III:  What is Disability Culture?
	         Handout:  "Language Is More Than A Trivial Concern"
OVERVIEW
EXERCISE 1:  Cultural Experiences
EXERCISE 2:  Our Subculture Can Make A Difference
	        Handout:  "Our Subculture Can Make A Difference"
EXERCISE 3:  High School Reunion
			Example and Symbols of Disability Culture 
EXERCISE 5:  The Bargain
EXERCISE 4:  Disability Cultural Experiences on Video 
             Handout:  "The Bargain"
	        Handout:  "The Bargain" Discussion Questions
EXERCISE 6:  Is There A Disability Culture?
EXERCISE 7:  Majority Cultural Goals
	        Handout:  "Majority Cultural Goals"
EXERCISE 8:  The Activist Leap 
	        Handout:  "The Activist Leap"
EXERCISE 9:  Disability Pride and Culture Summary
             Handout:  Disability Pride Inventory Handout: Disability Culture and Pride:  True/False Quiz 
	        Handout:  Disability Culture and Pride:  True/False Quiz Answers 	
	        Handout:  Disability Pride Summary
ABOUT THE AUTHOR
ABOUT ILRU

"The alienation, loss of dignity, feelings of incompetence of lack of self-worth . . . that are common among powerless people can only be overcome by those people themselves.

Mike Miller, Christianity and Crisis, 1981.

FOREWORD

Of the many activities conducted by independent living centers which benefit their communities and society as a whole, perhaps those that have the greatest long-term public benefit involve assisting people with disabilities to increase their sense of self-worth and to become effective self-advocates.

The need for such assistance remains acute despite extraordinary gains that have been made in disability rights as a result of enactment of the Americans with Disabilities Act, the 1992 amendments to the Rehabilitation Act, and other local, state, and national programs. The fact is, people with disabilities are daily faced with discrimination and negative attitudes that can erode self-esteem and individual pride.

For over two decades, independent living centers have taken a leading role in efforts to assist people with disabilities in dealing effectively with attitudes and behaviors that have the potential to undermine the sense of self-worth and pride in being a person with a disability. Indeed, as the vehicles for operationalizing the philosophy of the independent living movement, centers have had an extraordinary impact in fostering self-worth and self-empowerment among people with disabilities. Equally significant has been the impact of centers in promoting a positive disability culture that recognizes the substantial contributions that people with disabilities make in their homes, communities, and country.

This publication, DISABILITY PRIDE, was developed as a tool to assist centers in their ongoing efforts to promote a sense of self-worth and pride in what each person can contribute regardless of physical, cognitive, sensory, or other type of disability. We thought that the best approach would be to develop a trainer's manual which staff at centers could use in developing and conducting their training programs. We asked June Kailes to lead this effort for us, and she has done a remarkable job. As you go through the manual, you will appreciate its very practical while very thorough approach to conducting training on this subject.

It is our intention for this to be the first in a series of trainer's manuals on advocacy and leadership development. Additional manuals will be developed as funds become available. We welcome any comments and recommendations you care to make regarding this manual or topics for manuals to come.

Laurel Richards
Series Editor
November 1993

DISABILITY PRIDE
The Interrelationship of Self-Worth,
Self-Empowerment, and Disability Culture

"A wonderful side effect of this empowerment is that it nurtures itself and grows. It produces a system based on self-determination and productivity, i.e., the power of an individual to fully develop his or her potential...."

Douglas Bilken, "Empowerment:  Choices and Change," 
TASH Newsletter, 1988.

INTRODUCTION

In discussions with people in the independent living and disability rights fields who are involved in leadership development, advocacy skills building, and community organizing, I began to see a need for an advocacy and leadership development training manual. Such a manual would serve as a support for training programs to assist people with disabilities in becoming effective advocates, refining advocacy skills, and becoming effective leaders. It would also be a way to develop new material as well as to assemble curriculum material, ideas, and best practices from an array of collected materials (outlines/handouts/overheads, films, audio and video tapes) that are being used in leadership and advocacy development programs in human service agencies, independent living centers, and other grass roots organizations.

Individuals responsible for these types of skill-building projects have spent countless hours of their precious time reinventing the wheel--that is, either searching for material or re-developing material which has already been developed by someone, somewhere. The manual I envision would provide a "basic wheel" which users can adapt, refine, and strengthen to met the needs of people with disabilities in their communities. I discussed this idea with staff at ILRU (Independent Living Research Utilization) Program in Houston, and they agreed that such a manual would be useful to the field--particularly in light of advocacy being one of the four core services provided by an independent living center, according to the National Council on Disability standards approved in 1985.

This document represents the first contribution to the manual. I started with what I considered to be the most important subject:  development of disability pride. Future chapters will be developed, as time and funds permit.

RECRUITING AND SELECTING PARTICIPANTS

Bringing together people with similar advocacy issues is an excellent way to start an advocacy skills development program. People with disabilities, like most people, get involved because of self-interest issues, that is, things that are meaningful to them. They get involved for social contact and to make changes.
People get involved in issues! They tell us about their issues every day. It is the job of an organization committed to leadership development and advocacy skill building to weave these folks together--that is, to bring together people with common concerns about transportation, housing, access, benefits, etc. You do not need a lot of people to make change. Three to five people can make a big difference ! The issue may be small, but if it is an issue that more than two people feel strongly about, then it may be a great real-time, real-life problem to work on! This group experience creates confidence and allegiance, and success invigorates and motivates people to get involved in bigger issues.

The best learning is when people can apply theory to practice. For this reason, good advocacy and leadership development should always be issue based. Work with people "where they are at" versus where you think they should be. People need to focus on their own issues. For example, if people come to a leadership development program concerned about not being able to get into a neighborhood restaurant, then your activities should focus on this issue. The session you may have planned, for instance, dealing with language or disability pride, can wait! The Social Security issue you would have liked the group to focus on will have to wait or may never be this particular group's priority. The important job in developing advocacy and leadership skills is to focus on participant's immediate advocacy concerns.

People will bring their issues to any leadership experience or advocacy training. Use these issues in the skills-building process. Issues should be focused and narrow, measurable and tangible. It is important to find little issues within big issues. For example, a good advocacy issue is not "access," it is the need for a ramp into a coffee shop, a curb cut, or access to the podium at City Hall. A good advocacy issue is not "transportation," it is a responsive paratransit system where the demand and response time is very short.

The best way to recruit people is by calling them. Personal recruiting and calling people works best! Distributing information sheets is a good adjunct technique, but it should not be the primary method of recruitment. Recruit people with disabilities who (one or more):

! express an interest, or you think might be interested, in the disability rights movement, advocacy skills building and leadership development;

! have an issue(s) they feel strongly about and possibly would like to work on (discrimination, lack of access, benefits problems, transportation, etc.);

! are concerned about disability-related services, issues and/or advocacy;

! can express or have the potential for expressing ideas in public and interacting effectively and appropriately within groups;

! have a beginning sense of self-empowerment and understand their potential power to make and or influence change;

! demonstrate beginning skills or have the potential for developing skills in assertiveness, self-advocacy and/or community advocacy, working with community groups and agencies, conceptualizing and communicating personal views; and

! demonstrate achievement in one or more the following:  volunteer work, education, employment, advocacy, and independent living.

Work or training groups are more dynamic when they are made up of people with a range of advocacy experiences. Information presented in this document is appropriate for all types of advocates, beginner to experienced, unsophisticated to sophisticated. A heterogeneous pool of people with disabilities, representing diverse competencies and needs, is the most effective group for leadership development training. People learn a great deal from each other, and they establish their own informal networks, as well as informal mentoring relationships. Peer teaching and role modeling--that is, people learning from each other--is a major element in sound advocacy skills building.

In the recruiting process, participants should not only be drawn from the pool of individuals directly served by your organization, but also through aggressive community-based outreach activities. In this way, a very diverse group can be recruited. Potential participants should also be asked if they know of other people with disabilities who might be interested in the experience.

Where to recruit:  disabled students programs at colleges and universities, independent living centers, public and private disability-related agencies, councils, task forces, advisory groups.

DURATION AND FORMAT OF LEADERSHIP DEVELOPMENT PROGRAMS

A number of factors need to be considered when one plans the time frame for the advocacy and leadership development program. For instance, area circumstances, such as meeting room availability, paratransit and transit capabilities, facilitator availability, weather, etc., will dictate certain discussions. In addition, one must consider the period of time the program should take. The leadership development program can be presented in either a condensed period of time, such as over one or two weekends, or it can be stretched out over a period of several weeks. There are advantages to each. Here are some issues to consider: 

Conducting the workshop over one or two weekends: 

! Attendance may be better since people are likely to make one or two sessions versus multiple sessions. The more sessions, the more likely attendance may not be consistent since participants' schedules tend to interfere, as do transportation problems.

! Can include people who are working day-time jobs during the week.

! Entire days may be difficult for some individuals who experience endurance problems.

Conducting the workshop over several weeks:

! There is more time for participants to integrate new information and do homework which builds on materials and information presented.

! Some people like to save weekends for personal and family activities.

! Group networking and bonding may be stronger over a longer time frame.

! Group bonding/support and informal networking is a natural outgrowth of these programs and can be fostered when there is adequate time by building in long break periods, unstructured time, etc.

! Allows more time for speakers and field trips.

! Transportation and logistical planning problems tend to get compounded.

Translating the content of advocacy and leadership development into a person's day-to-day life often necessitates some kind of ongoing support--at least the opportunity to talk to a small group or an individual in terms of problem solving, brainstorming, or just encouragement and support.

The ability for small groups of participants, or even a large group, to meet together informally is a way of increasing their problem-solving capabilities, as well as expanding their mutual social support networks. It is an effective method of engaging people in helping others who are facing similar challenges and problems. It also can serve as an important sharing experience when participants can share their current "highs" and "lows" with respect to their advocacy-related goals and objectives.

After or between meetings, groups of participants should be urged to meet around issues. The host who is offering the program should be prepared to facilitate the groups' development by allowing them to use the telephones, computers, mailing lists, copy and fax machines, secretarial support, postage, space for meetings, occasional financial assistance with transportation, and staff assistance as needed and requested. In other words, once a commitment is made to developing new leadership and promoting advocacy efforts, the host needs to be prepared to offer the group support.

A CLOSING NOTE

As mentioned above, this advocacy and leadership development manual is being written chapter by chapter, as time and funds permit. Subjects being considered for future development include:

! Why be involved in disability rights

! Personal goals and selecting role models and mentors

! Building generic advocacy skills

! Communicating:  Getting your point across

! Organizing or how you change the system
! Accessing the political sphere and demystifying the process, and

! Community involvement

If you have suggestions for additional subjects or would like to recommend which of these you would like to see developed first, please contact us at ILRU. We also welcome any feedback you care to give us on this present work.

DISABILITY PRIDE

General Overview

PURPOSE:

The purpose of this document is to examine how common stereotypes about disability influence self-image and feelings about disability on the part of people with disabilities, to assess how disability-related language can foster negative or positive images about disability, to examine disability culture as the common experience among people with disabilities, and to consider the concept of disability pride as related to self empowerment.

This chapter consists of three sessions:

SESSION I:	The Role Disability Stereotypes Play in the Development of Self-Worth

SESSION II:	Language as an Element of Disability Pride and Culture

SESSION III:	What is Disability Culture?

MATERIALS NEEDED:

--Participants should have note-taking supplies

--Copies of handouts

--Flip chart and marking pens

--Tape and/or thumb tacks

--Name tags

FACILITATOR:

Qualifications:

--A person with a disability who has a solid understanding of self-worth, self-esteem, disability pride, and disability culture issues.

--Ability to share freely experiences related to one's own disability acknowledgement process and experiences.

--Possess good group facilitation skills.

Orientation:

--Become familiar with materials by reading through all sessions and handouts.

--Select group exercises appropriate to group and time available.

REFERENCES AND SELECTED RESOURCES:

READINGS

Beisser, Arnold R. Flying Without Wings. Doubleday, New York. 1989.

Bowe, Frank G. "Self Determination at the Community Level."  Delivered at the National Conference on Self-Determination. Arlington, Virginia, January, 1989.

Brightrnan, Alan J. Ordinary Moments:  The Disabled Experience. University Park Press, Baltimore, 1984.

Gallagher, Hugh G. FDR'S Splendid Deception. Dodd, Mead, and Sign Co., New York, 1985.

Kahn, Si. Organizing, A Guide for Grassroots Leaders. McGraw-Hill Book Company (paperback), 1982.

"Rehabilitation Into Independent Living."  30th Anniversary Issue of Rehabilitation Gazette. Laurie, G., Headley J., Mudrovic, W. (Eds.). Vol. 29. No. 1&2, 1989. Available from Gazette International Networking Institute, 4502 Maryland Avenue, St. Louis, MO, 63108.

Stewart, Jean. The Body 's Memory. St. Martin' s Press, New York, 1989.

Weiner, Florence. No Apologies:  A Guide to Living with a Disability Written by Real Authorities--People with Disabilities, Their Families and Friends. St. Martin's Press, New York. 1986.

Vash, Carolyn L. The Psychology of Disability. Springer Publishing Co., New York, 1981.

Willig Levy, Chava. A People 's History of the Independent Living Movement. 1988. Available from Research and Training Center on Independent Living, The University of Kansas, BCR/3111 Haworth Hall, Lawrence, KS 66045, (913) 864-4095 (Voice/TDD).

Wright, Beatrice A. Physical Disability--A Psychological Approach. Harper and Row, 1960.

PERIODICALS
The Disability Rag, Box 6453, Syracuse, NY 13217. $12.00 for one year.

This Brain Has A Mouth, 61 Brighton Street, Rochester, NY 14607.
Published by Head Injury Survivors, $12.00 for one year; write for free sample.

The National Advocate, P.O. Box 41, Albany, GA 31702. Free.

ADAPT/Incitement, 1208 Marshall Lane, Austin, TX 78703. Contributions welcome.

FILMS, AUDIO AND VIDEO TAPES

Tell Them I'm a Mermaid. Available for sale for $99.00 or rental for $50.00. Send an additional $5.00 for shipping and handling. Film Incorporated Videos, 5547 North Ravenswood Avenue, Chicago IL 60640. (800) 323-4222, Ext. 43.

We Won't Go Away and Ed Roberts on 60 minutes. Rents for $ 15 each including postage from World Institute on Disability, Attn:  Video Rentals, 510 16th Street, Oakland, CA 94612, (415) 763-4109.

SESSION 1

The Role Disability Stereotypes Play in the Development of Self-Worth

Overview

EXERCISES:

1. Identification of stereotypes associated with disability
	Handout:  List of Common Stereotypes (Optional)

2. How have disability stereotypes affected you?

3. What to do about disability stereotypes?
	Handout:  What is your role ?

4. Strengths that result from living with disability

5. The environment often causes the real disability

PURPOSE:

Examines common stereotypes about disability and considers how these may have influenced self-image and feelings about disability.

Fosters new insights related to what contributed to the personal development of, or lack of, a sense of self-worth and self-pride.

Assists individuals in exploring how they view their disability and what contributed to this view.

Helps people to get in touch with negative messages they receive about their disability and examine where these messages came from.

Examines the concept that people with disabilities can plan a key role in challenging and changing society' s stereotypes about disability.

Explores strengths that one acquires as a result of living and coping with disability.

Views the environment as the real cause of disability versus seeing disability only in terms of problems with one' s body.

EXERCISE 1

Identification of Stereotypes Associated with Disability

ESTIMATED TIME:
15-30 minutes

FORMAT:
Small groups of five people or large group discussion

HANDOUT:
List of Common Stereotypes (Optional)

ACTIVITY:
Have group members identify stereotypes associated with disability, list each stereotype on a flip chart paper, and then discuss items listed.

Mention a few stereotypes (see List of Common Stereotypes) if group(s) have difficulty getting started, or mention at end of exercise those stereotypes that may have not have listed.

Examine common stereotypes about disability and consider how these may have influenced self-image and feelings about disability.

NOTE TO THE FACILITATOR:
Use the attached List of Common Stereotypes as needed. Also, incorporate into the discussion the following ideas:

These misconceptions are commonly accepted by society and adversely affect the feeling of self-worth that many people with disabilities have.

Many people with disabilities are deeply affected by how our society views and devalues disabilities.

Some people with disabilities have internalized these views which can contribute to self-hatred.

PURPOSE:
Illustrates the pervasiveness of negative myths and stereotypes surrounding disability.

List of Common Stereotypes (Optional)

In spite of significant changes in the world of disability, negative stereotypes and myths still exist. In general, our society still views disability as something to be ashamed of and sees disability as something biologically unacceptable and unnatural.

Society views people with disabilities as:

--biologically inferior

--unfortunate cripples

--burdens

--victims

--outcasts

--menaces

--asexual

--subhuman

--fragile

--sick:  to be treated and cured or cared for!

--needing charity and welfare:  having little value to society (telethons have perpetuated several of these images.)

--deficient:  without skills and talents

--deviant:  behavior or appearance that is outside the social norm. What is considered deviant varies from culture to culture.  Often the real deviancy is in the eye of the beholder.  This flawed perception has been shaped by standards of acceptable behavior, cultural values, and the way these values are interpreted.

EXERCISE 2

How Have Disability Stereotypes Affected You?

ESTIMATED TIME:
For Activity A:  20-30 minutes
For Activity B:  60-90 minutes

FORMAT:
Small groups of 3-5 people or large group discussion.

HANDOUT:
None

ACTIVITY:
Choose activity "A" or "B" or both.

Activity A:  Conduct a group discussion, addressing the following questions:

	Do the stereotypes listed in Exercise 1 sound familiar?
	How have they affected feelings about yourself?
	Which of these do you think are not true?
	Which of these do you think are still true?
	Which of these are you still not sure about?
	How do these stereotypes compare to other group stereotypes?

Activity B:  Invite one or more insightful and articulate speakers with disabilities to address the following:

	1. How have disability stereotypes affected their self-concepts?
	2. How did they move beyond these stereotypes in terms of their own sense of self-worth?
	3. Did they ever deny their disability existed or try to pass as a person without a disability?  Why?  What was this experience like?
	4. How did they come to acknowledge their disability?
	5. How have people with disabilities (friends, role models, mentors and heroes) influenced their lives?

Group questions and discussion should follow the speaker(s)' presentation.

NOTE TO THE FACILITATOR:
In this exercise' s summary discussion, incorporate the ideas in the following statements.

People with disabilities, like society in general, have been exposed to and often influenced by negative stereotypes about disability. This did, and still does, affect the development or maintenance of a strong sense of self-worth and self-esteem for many people with disabilities.

This is why it is so important to take time to examine these stereotypes and to think about how they may have influenced your own self-image and your own feelings about your disability. It is important to see these stereotypes for what they are:  stereotypes and misconceptions! This examination process helps people to move beyond the oppressive effects of these stereotypes.

PURPOSE:
Fosters new insights related to what contributed to the personal development of, or lack of, a sense of self-worth and self-pride.

Assists individuals in exploring how they view their disability and what contributed to this view.

Helps people to get in touch with negative messages they receive about their disability and examine where these messages came from.

EXERCISE 3

What to Do About Disability Stereotypes?

ESTIMATED TIME:
30 minutes per activity

FORMAT:
Large group

HANDOUT:
What is Your Role ?

ACTIVITY:
Choose activity "A" or "B" or both.

Activity A: Conduct a discussion addressing the following question:  What can people with disabilities do to change disability stereotypes?

Activity B: Hand out What Is Your Role? and read aloud as a way of starting (or continuing) a discussion on what people can do to change disability stereotypes.

PURPOSE:
Illustrates that people with disabilities can play key roles in challenging and changing society' s stereotypes about disability. That is working toward changing society's image of people with disabilities from passive, helpless, objects of charity to that of vital, powerful, valuable, and productive people.

What Is Your Role?

Society reinforces the erroneous concept that people with disabilities are inherently inferior to people without disabilities by attempting to restrict or confine people with disabilities to roles which are considered socially inferior, such as sick person, weak person, non-contributing person."  Society often seems comfortable with us only when we stay where society would like to put us, in these socially less-than roles.

To the extent that we resist this social stereotyping and prove our competency by filling socially valued roles like wage-earner, taxpayer, time and talent contributor (volunteer), non-institutionalized person, active family member, and concerned and involved citizen, among others, we invalidate negative stereotyping and force society to deal with us where we are, not where society would like us to stay. By getting out there and showing your stuff in spite of the negative input of society, you can improve not only your level of acceptance, but the acceptance and integration of all disabled people. Every time a stereotype is challenged, a crack appears in the walls that confine us. YOU can be an agent of societal attitude adjustment just by being who you are and doing what you do best, openly and publicly.

--from:  Megan Turner, "Taking Charge," Metamorphosis, newsletter of the Atlanta Center for Independent Living, 1990.

EXERCISE 4

Strengths That Result from Living with Disability

ESTIMATED TIME:
20 minutes

FORMAT:
Large group

HANDOUT:
None

ACTIVITY:
Conduct a group discussion, addressing the following:

A. Certain Strengths:  There are certain strengths that come from living with disability. What are these strengths?

Possible answers:

--creativity, resourcefulness
--perseverance
--acceptance of differences and diversity
--ability to plan, to train, and to delegate
--assertiveness
--flexibility
--resilience
--humor

B. Changed Values:  Individuals who have critically examined and discarded myths about people with disabilities view people in general with a different value system. They tend to view people' s personalities as what is important, and they tend to devalue such treasured but pathological societal values as looking youthful and having physical perfection.

Physical characteristics are seen as less important, somewhat superficial, and easily changed by uncontrollable conditions like aging. As Reverend Martin Luther King, Jr. once said:  "It's no different for you and me. What's on the exterior has little to do with how successful we are. It's the spirit within us."

PURPOSE:
Illustrates that there are strengths that one acquires as a result of living and coping with disability. Emphasizes that common stereotypes and oppression do not have to suppress one's drive, spirit, and energy.

EXERCISE 5

The 'Built Environment' Often Causes the Real DisabilitY

ESTIMATED TIME:
15-20 minutes

FORMAT:
Large group

HANDOUT:
None

ACTIVITY:
Conduct a group discussion, addressing the following:

Many people with disabilities view their disability as problems with the environment rather than problems with their own body. It is the environment which frequently causes the real disability.

Do you agree with this statement?  If yes, give some examples to support this statement.

NOTE TO THE FACILITATOR:
In the closing discussion of this exercise, incorporate the ideas in the following statements:

Disability does not have to be about self-hatred and self-blame. Often it is not the disability which limits activities as much as the architectural barriers. The built environment limits participation, productivity, integration, independence, and equality.

If a person with a disability is offered a job that cannot be accepted because it is located on the second floor of a building without an elevator, the real problem is that there is no elevator.

When a person cannot attend school or a training program because there are no ramps or curb cuts, no interpreters, brailled or taped material, the real problem is that there is no physical and communication access to education.

The real problem is often the environment!

PURPOSE:
Presents the environment as the real cause of disability instead of seeing disability only in terms of problems with one' s body.

EXERCISE 6

Self-Worth and the Role of Stereotypes

ESTIMATED TIME:
15 minutes

FORMAT:
Large group

HANDOUT:
None

ACTIVITY:
Use this exercise to bring Session One to a close by reviewing the items listed in the purpose statement for this session given on page 11.

NOTE TO THE FACILITATOR:
In this discussion, you may want to incorporate the following statements:

Disability pride equals personal liberation from the handicapism (myths and stereotypes accepted about disability). It is an awareness and analysis of our experience and appreciation of how we have coped with disability and survived. It is a positive view of ourselves.

People with disabilities who acknowledge their disability view themselves as perhaps different but not inferior. Disability is an integral, important, and valid part of who they are, and they view disability as a natural occurrence of the human condition. They do not apologize for having a disability. They are proud of who they are and do not experience regular feelings of self-hate and self-depreciation.

This sense of pride does not develop over night, it evolves over time. On some days, feeling that sense of strength and pride is a struggle. There are good days and bad days; it is just important to have more good ones then bad ones.

Networking and being with peers with disabilities who feel good about themselves can help to reinforce the pride.

PURPOSE:
Provides closure to session by reinforcing concepts associated with self worth that were presented in earlier exercises.

CHANGE:  We resist it. We fear it. We avoid it at all costs. But change is not negative in itself, only in our perception of it. Instead of being an obstacle, change represents an opportunity--an opportunity for new ideas.

Author Unknown

SESSION II

Language as an
Element of Disability Pride and Culture

Overview

EXERCISES:

1. Value-laden Language

2. Language Quiz
Handout:  Language Quiz and Answers

3. Subculture Language

4. What Should People with Disabilities Call Themselves?

5. The Importance of Language
Handout:  Language Is More Than A Trivial Concern!

PURPOSE:

Increases awareness of how disability-related language can foster negative, positive, or neutral images and attitudes toward disability.

Illustrates how language is one element of disability pride and culture.

Illustrates that correct use of disability-related language is one way to change society' s negative attitudes toward disability because language does play a important role in shaping thoughts, beliefs, feelings, and behavior.

Explains the existence of and use of disability-subculture language.

EXERCISE 1

Value-Laden Language

ESTIMATED TIME:
20-40 minutes

FORMAT:
Large group

HANDOUT:
None

ACTIVITY:
Have group members identify words used to describe disability, write each word on flip chart paper, and then indicate if the words have positive, negative, or neutral meanings by placing "+" for positive, "-" for negative, or "0" for neutral.

NOTE TO THE FACILITATOR:
Usually, the majority of words listed receive a negative rating. The exercise should demonstrate that the pervasiveness of negative stereotypes surrounding disability is reflected and communicated through language and value-laden labels.

Discuss language as one element of disability pride and how promotion of correct use of disability-related language can be an effective method of changing society' s negative attitudes toward disability. Just as language structures the way one looks at oneself and the world, correct use of disability-related language can also be one method used to change society' s negative attitudes toward disability.

PURPOSE:
Increases awareness of how disability-related language can foster negative, positive, or neutral images and attitudes toward disability.

EXERCISE 2

Language Issues

ESTIMATED TIME:
20-40 minutes

FORMAT:
Large group

HANDOUT:
Language Quiz, Language Quiz Answers (Optional)

ACTIVITY:
Have everyone take the disability-related language quiz. Ask them to put a question mark after those answers about which they are unsure.

If you wish, pass out the suggested answers to the quiz. Have them compare their answers to the suggested answers that are provided, and then discuss in the large group.

NOTE TO THE FACILITATOR:
In the summary discussion of this exercise, discuss the following statements:

What is acceptable and what is unacceptable tends to change over time. Answers are open to continuing debate.

Many people who have incorporated disability pride or consciousness into their self-concept and are concerned about images and attitudes and stereotypes pay close attention to the disability-related language they use.

It is a language in which negative expressions like crippled, wheelchair bound, confined to a wheelchair, invalid, spastic, victim, dumb, mute, retarded, are not used.

Language often structures the way one looks at oneself and the world.

PURPOSE:
Increases awareness of how disability-related language can foster negative, positive, or neutral images and attitudes toward disability.

Illustrates that correct use of disability-related language is one way to change society' s negative attitudes toward disability because language does play an important role in shaping attitudes and ideas.

Language Quiz

Please place an "A" before those terms and phrases you believe to be acceptable and a "U" before those terms you believe to be unacceptable.
-- invalid
-- handicapped
-- person with a disability
-- special people
-- wheelchair user
-- polio victim
-- imbecile
-- normal person
-- hunchback          .
-- is arhritic
-- confined to a wheelchair
-- inconvenienced
-- differently-able
-- handi-capable
-- physically challenged 
-- humpback
-- is cerebral palsied
-- retardate
-- a person who has a speech impairment
-- crazy
-- person without a disability able-disabled handicapper
-- has an emotional disability a psychiatric disability
-- disfigured
-- disability
-- had polio
-- disabled people wheelchair bound stroke patient crippled idiot -- deaf person spastic mute
-- birth defect has fits
-- a congenital disability
-- midget
-- able-bodied person
-- overcame disability
-- lives with a disability
-- has a withered arm
-- people of short stature
-- retarded
-- a person who has mental retardation
-- has cerebral palsy
-- disability community
-- a person who is deaf
-- a person with a congenital disability
-- a person who has had a disability
   since birth
-- spaz
-- afflicted 
-- deformed
-- palsied
-- maimed
-- a person who has seizures
-- mute
-- the blind 
-- multiple sclerosis 
-- deaf 
-- mute 
-- feebleminded 
-- moron

Answers to Language Quiz*

Our words affect our thoughts,
our thoughts affect our beliefs,
our beliefs affect our feelings,
our feelings affect our behavior,
and
our behavior affects the world!

--Shirley Devol VanLieu, Ph.D.

Please place an "A" before those terms and phrases you believe to be acceptable and a "U" before those terms you believe to be unacceptable.

U invalid
U handicapped
A person with a disability
U special people
A wheelchair user
U polio victim
U imbecile
U normal person
U hunchback
U is arthritic
U confined to a wheelchair
U disfigured
A disability
U disabled people
U wheelchair bound
U stroke patient
U crippled
U idiot
U deaf person
U spastic
U mute
A had polio
A person without a disability	 
U inconvenienced
U able-disabled	 		 
U differently-able
U handicapper
U handi-capable
U physically challenged	      
U humpback
U is cerebral palsied	      
U retardate
A a person who has a speech impairment 
U crazy
A has an emotional disability	 
U birth defect
A a psychiatric disability
U has fits
A a congenital disability
U midget
U able-bodied person	 
U spaz
U overcame disability 
U afflicted
A lives with a disability 
U deformed
U has a withered arm 
U palsied
A people of short stature 
U maimed
U retarded
A a person who has seizures
A a person who has mental retardation 
U mute
A has cerebral palsy 
U the blind
A disability community 
A multiple sclerosis
A a person who is deaf
U deaf mute
A a person with a congenital disability 
U feebleminded
A a person who has had a disabilitY since birth
U moron

* What is acceptable and what is unacceptable tends to change over time. These suggested answers are open to continuing debate.

EXERCISE 3

Subculture Language

ESTIMATED TIME:
15-25 minutes

FORMAT:
Large group

HANDOUT:
None

ACTIVITY:
Conduct a group discussion, addressing the following question:  Can you give examples of disability-subculture language similar to words like gimp?

NOTE TO THE FACILITATOR:
In the closing discussion of this exercise, incorporate the ideas from the following statements:

When, we who have disabilities are in public, it is important that we use correct, non-stereotyped terminology, such as, "people with disabilities."  Back in our own culture or subgroup, we can use our own labels.

For example, Afro-Americans in public tend to use English, while at home or in a subculture group they may use black English with its own idioms and syntax.

Some students who are deaf do the same thing, using signed English in the classroom, switching back to American Sign Language among themselves.

People with disabilities use words like para, quad, crip, gimp, and blind.  These words are acceptable within the confines of our own subculture group where these terms are affectionately or jokingly used.

We view these same terms, however, as inappropriate and derogatory when used in public by people without disabilities.

PURPOSE:
Illustrates the existence and use of subculture language.

EXERCISE 4

What Should People with Disabilities Call Themselves?

ESTIMATED TIME:
15-30 minutes

FORMAT:
Large group

HANDOUT:
None

ACTIVITY:
Conduct a group discussion, addressing the following:  What should we call ourselves?

NOTE "A" TO THE FACILITATOR:
People with disabilities are still struggling to speak in unison about what we choose to call ourselves.  In terms of disability culture, we have a big problem in that the terms used to describe us were imposed from the outside.  One is a social service term, handicapped; another, a medical and employment-oriented term, disabled.

A significant element in the struggle for basic human rights is what people call themselves.  For example, Negro became black and is now African American.  Indian became Native American.

People with disabilities, frustrated and dissatisfied with the common negative terms used to describe disability, are still struggling to speak in unison about what we choose to call ourselves.  Terms such as disabled and handicapped have been imposed from the outside, from definitions derived from social services, medical institutions, governments, and employers.

NOTE "B" TO THE FACILITATOR:
In the closing discussion of this exercise, discuss the following ideas:

A true sign of culture is when much attention is devoted to what the group should call itself.  One of the first steps in any struggle for basic human rights is what people call themselves.

Disability culture is the common experience among people living with disability, and language is one of the keys to acknowledging this culture.  Many disability advocates who are frustrated and dissatisfied with the common negative terms used to describe disability have coined such words as inconvenienced, able-disabled, differently-able, handicapper, handi-capable and physically challenged.  These alternatives have not been widely endorsed because they are seen as euphemistic--denying the reality of a disability or trivializing disability.

Our struggle for a widely accepted, self-imposed label goes on (and this struggle is a strong sign of disability culture).  The most widely accepted terms to date, although not universally accepted, are people with disabilities or a person with a disability.

What is really important here may not be the term as much as the process of choosing a label rather than having it imposed from the outside.

PURPOSE:
Illustrates the difficulty and complexity of deciding on a term that a majority of people agree on.

Illustrates again that disability culture is the common experience among people living with disability and that language is one of the keys to acknowledging this culture.

EXERCISE 5

The Importance of Language

ESTIMATED TIME:
15-60 minutes

FORMAT:
Large group

HANDOUT:
Language is More Than a Trivial Concern!

ACTIVITY:
Following a reading of the handout, conduct a group discussion and address the following questions:

What were your overall impressions of the article?
Did anything you read surprise you?
Were there points you disagreed with?

NOTE TO THE FACILITATOR:
You may choose to assign this reading for homework to be discussed at the next meeting, or you may choose to have the article read to the group and then discuss it.

PURPOSE:
Reviews and summarizes all of the points made during this session on language.

LANGUAGE IS MORE THAN A TRIVIAL CONCERN!

By June Isaacson Kailes
Disability Policy Consultant
Los Angeles, California

LANGUAGE IS MORE THAN A TRIVIAL CONCERN!

By June Isaacson Kailes
Disability Policy Consultant
Los Angeles, California

Our words affect our thoughts,
our thoughts affect our beliefs,
our beliefs affect our feelings,
our feelings affect our behavior,
and
our behavior affects the world!
-Shirley Devol VanLieu, Ph.D.

NOTE:  This article results from the author's frustration related to the lack of concern, understanding and the sloppiness of the language people use when talking or writing about disability.  Some people say that language is a trivial concern and the disability rights movement has much more pressing problems to solve.  Language structures our reality.  Comments from readers are encouraged and welcomed!

Public attitudes about disability are much more disabling than the actual disability.  Attitudinal barriers are the most difficult barriers to overcome.  The challenge is to change attitudes on many levels:  legislation, regulation, integration, education, personal relationships and LANGUAGE.

Disability advocates strive for equality, community accessibility and acceptance, yet they are continually confronted by language which perpetuates negative stereotypes of who they are.  People with disabilities, disability rights activists, writers, reporters, editors, educators and supporters must become aware of the power of language.  Are you perpetuating negative attitudes and false stereotypes of people with disabilities with your language?

DISABILITY versus HANDICAPPED

Which to use?  This is a continuing yet dwindling controversy among people with disabilities.  The legal and political systems have in the past favored and institutionalized the word "handicapped."   This has changed during the last several years, however, with government entities and organizations such as the National Council on Disability changing its name from the National Council on the Handicapped and the President's Committee on Employment of People with Disabilities changing its name from the President's Committee on Employment of the Handicapped.  Also, new and reauthorized disability-related legislation has changed from using the word "handicapped" to using "people with disabilities."

"Handicapped" connotes the miserable image of a person on the street corner with a "handy cap" in hand, begging for money.  The word "disability may not be perfect, as it still implies a negative:  what a person cannot do, but it has become the most widely used and accepted among people with disabilities.

Beatrice Wright, in her classic book Physical Disability.  A Psychological Approach (1960), differentiates the meaning of the two words.  She explains that a disability is a condition, either emotional or physical.  A handicap is the cumulative result of the obstacles which a disability interposes between individuals and their maximum functional level.  Therefore, not all disabilities are really handicaps.  A wheelchair user is not handicapped in an environment where there are no steps.  A person who is deaf is not handicapped when using a teletype device for the deaf (TDD - a telephone with a keyboard and message display or print out).  People who are blind are not handicapped in jobs where they use computers with voice output.

In other words, a disability does not always mean a handicap.  People are not handicapped by their disability all the time.  A disability can mean that a person may do something differently as compared to a person who does not have a disability, but with equal participation and equal results.

It is the built environment that is often the severe handicap.  The built environment limits participation, productivity, integration, independence and equality.  If a person with a disability is offered a job that cannot be accepted because it is located on the second floor of a building without an elevator, the real handicap is that there is no elevator.  When a person cannot attend school or a training program because there are no ramps or curb cuts, the real handicap is that there is no physical access to an education.  The real handicap is often the built environment!

PEOPLE WITH DISABILITIES

In our use of language, both written and verbal, we can choose to emphasize peoples' similarities or their differences.  The term "a disabled person" is a sloppy short-cut to the more involved and sometimes more awkward, but psychologically sounder expression, "a person with a disability."  The latter is by far preferred.  It depicts a person with a disability as a person first, with multi-dimensional characteristics in addition to his or her particular disability.  "Disabled person" represents differentness and separateness, reducing a person's identity to his or her disability.  This distorts and undermines who people with disabilities are and how they want to be seen.  We don't refer to people with broken legs as "broken leg people!"  Similarly, the use of "the disabled" or "the blind" denies any sense of individuality.  A preferable term would be "people with disabilities" or "people who are blind".
A woman who has a disability as a result of polio and uses a wheelchair can also be a mother, a wife, an executive, a student, a citizen, a board member, a gifted public speaker, etc.  A man who is a quadriplegic and is paralyzed from the neck down is not a "vegetable."  Although he has a severe physical disability, he may be extremely mentally able and a contributing, productive member of society.

People with disabilities should not be labeled as being "special."  Although the term is often used in descriptions such as "special education," it is seen as patronizing, inappropriate and distancing.  It is not necessary.  "Special" has become a euphemism for segregated.

WHEELCHAIR USER versus WHEELCHAIR BOUND/CONFINED TO A WHEELCHAIR

People are not bound to wheelchairs.  People use wheelchairs to increase their mobility, similar to the way people use cars.  Many people who use wheelchairs do walk but find wheelchair travel faster and easier.  Often, ability and speed of movement are increased by wheelchair use.  For many, a wheelchair means increased mobility -- freedom! People who use wheelchairs can transfer to cars and chairs.  Thus, .. they are neither confined nor bound to their chairs.

....used with permission from The Disability Rag, July 1985

PATIENT

"Patient" is a person sitting or lying passively or "patiently" waiting for something to be done to or for her/him.  People with disabilities are not constant patients.  Like others, people with disabilities do periodically seek medical attention.  They are, however, not chronically sick.

VICTIM

The word "victim" is appropriate to use immediately after a diagnosis, an injury or some form of sexual abuse (victim of a violent crime, accident victim, or rape victim).  It is inappropriate to use to describe an ongoing status.  A person is not a victim of Multiple Sclerosis, Cerebral Palsy or a stroke for a lifetime.

CRIPPLED

"Crippled" is derived from an old English word meaning "to creep."  Webster's New World Dictionary gives a second meaning to the word "cripple" which is "inferior."  These are terrible images which perpetuate negative stereotypes!

NORMAL PERSON

One could argue about the definition of the word "normal" indefinitely.  "Normal person, " when used in contrast to "a person with a disability," implies that people with disabilities are not normal.  If you are referring to a person who does not have an apparent disability, it is more accurate and less stereotypical to refer to the person as "a person without a disability."

CONTINUING THE SEARCH FOR THE ACCEPTABLE TERM WHAT WE CHOOSE TO CALL OURSELVES

A significant element in the struggle for basic human rights is what people call themselves.  For example, "Negro" became "black" and is now "African-American" and "Indian" became "Native American."  People with disabilities, frustrated and dissatisfied with the common negative terms used to describe disability, are still struggling to speak in unison about what we choose to call ourselves.  Terms such as "disabled" and "handicapped" have been imposed from the outside, from definitions derived from social services, medical institutions, governments and employers.

Disability culture is the commonality of the experience of living with disability and language is one of the keys to acknowledging this culture.  In an effort to choose our own terms, various groups have coined such words as "inconvenienced," "able-disabled," "differently-able," "handicapper," "handicapable" and "physically challenged."  These alternatives have not been widely endorsed because they are seen as euphemistic -- denying the reality of a disability, or trivializing disability.

The following list illustrates examples of both acceptable and unacceptable terminology:

EXAMPLES OF PREFERRED TERMINOLOGY

Dehumanizing/Offensive
Unacceptable

Acceptable

Disabled person ...................	A person who has a disability

A blind person ....................	A person who is blind

A deaf person .....................	A person who is deaf

A hunchback or humpback ...........	A person who has a spinal curvature

The disabled .................	      People who are disabled,        People with disabilities,        Disability community

She is crippled ...................	She has a disability

He is arthritic....................	He has arthritis

She is cerebral palsied ...........	She has cerebral palsy

Dumb, deaf mute, dummy ............	A person who has a speech (Implies that an intellectual			hearing impairment, or impairment occurs with a hearing 		is deaf
loss or a speech impairment)

Mute ...............................	A person without speech or 								a person who has a speech 								impairement 

He is chronically mentally ill, ......	He has a mental illness
He is crazy						He has an emotional 								disability
								He has a psychiatic 								disability		

He was afflicted with, ...............	He had polio  
victim of, stricken with or 
suffers from polio

Retard, retardate, retarded, .........	A person who has mental 								retardation 

Birth defect ........................	A person who has had a 								disability since birth, a 								congenital disability

Fit .................................	Seizure

Sick ................................	Use only when a person is 								actually ill

Patient . ..........................	Use only when a person is 								actually being seen or 								treated by medical 								personnel

Midget, dwarf, little people ........	People of short stature

"Normal person" .....................	A person without a
"able-bodied person" as compared		disability as compared
to a disabled person				to a person with a 								disability

Confined to a wheelchair/...........	A person who uses a
wheelchair bound					wheelchair, a wheelchair 								user

She overcame her disability .......	She lives with a disability People don't overcome disability.  They overcome social economic, psychological, attitudinal, architectural, transportation, educational and employment barriers.)

Other words which should be avoided because they have negative connotations and/or tend to evoke pity include:

Abnormal	Invalid	Spastic
Afflicted	Imbecile	Spas
Burden	Maimed	Stricken with
Defect	Misshapen	Sufferer
Deformed	Moron	Victim
Deviant	Palsied	Withered
Disfigured		Poor unfortunate

SUMMARY

It will take time to change old language habits, but if you are committed to increasing equal treatment, community awareness, acceptance and access, then you must be concerned and take time to be vigilant about the language you use.  Language does play an important role in shaping ideas and attitudes.

Become consciously aware of the images and attitudes you convey with words.  Discard negative labels and use accurate language.  By doing so you will dispel the myths and enlighten others about the meaning of disability.

An earlier version of this article was published in:  JOURNAL OF REHABILITATION, 1-3/85, "Watch Your Language, Please!"

Copyright, 1984:  Revised 2/1988, 11/1990, 2/1992.

All rights reserved.  No part of this document may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage or retrieval system without prior written permission from the author:  JUNE ISSACSON KAILES, DISABILITY POLICY CONSULTANT, 6201 Ocean Front Walk, Suite 2, Playa del Rey, CA 90293-7556.  (310) 821-7080 or FAX (310) 821-0269.

SESSION III
What Is Disability Culture?

Overview

EXERCISES:

1. Cultural Experiences

2. Our Subculture Can Make a Difference
Handout:  Article:  Our Subculture Can Make a Difference

3. High School Reunion
Handout:  Examples of disability culture

4. Disability Culture and Pride:  Experiences on Video

5.  The Bargain
Handout:  Article:  The Bargain and Discussion Questions

6. Is There a Disability Culture?

7. Majority Cultural Goals
Handout:  Majority Cultural Goals

8. The Activist Leap

Handout:  The Activist Leap

9. Disability Pride and Culture Summary
Handout:  Disability Pride Inventory
Disability Culture and Pride--True/False Quiz
Disability Pride Summary

PURPOSE:
Illustrates that disability culture is the common experience among people with disabilities and that language is one of the keys to acknowledging this culture.

Examines the concept of disability culture and the disability experience.

Explores the breadth of disability experiences, history, humor, and culture.

Discusses how the concepts of disability pride and culture can contribute significantly to people' s comfort with and ability to get involved with disability rights and advocacy activities.

EXERCISE 1

Cultural Experiences

ESTIMATED TIME:
40 minutes

FORMAT:
Large group or small groups

HANDOUT:
None

ACTIVITY:
If possible divide the large group into smaller groups of people who are from similar cultural backgrounds (Italian, Irish, Catholic, Jewish, Oriental, etc.) If not possible, then conduct the activity in a large group.

Read this quote to the participants:

People are influenced the most by the values of those closest to them:  their family, their friends, their neighborhood, their religious group, their ethnic, gender, and racial group (from Si Kahn, Organizing, A Guide for Grassroots Leaders, McGraw-Hill Book Company, 1982, p. 325).

Have the group(s) identify (and record on a flip chart) the general cultural traditions and values with which they grew up (food, family, religious and/or spiritual activities, holidays, etc.) and ask them how have these values and traditions have influenced their lives.

NOTE TO THE FACILITATOR:
In the closing discussion of this exercise, point out how various cultural experiences influence people's lives.

PURPOSE:
Reviews cultural backgrounds and traditions as a way to reflect on the variety of cultural experiences people have while growing up.

EXERCISE 2

Our Subculture Can Make A Difference

ESTIMATED TIME:
For Activity A:  60 minutes
For Activity B:  60 minutes

FORMAT:
Large group

HANDOUT:
Article:  Our Subculture Can Make a Difference

ACTIVITY:
Discussion question.  You may choose to approach this exercise by Activity "A" or "B."

Activity A:  Read the article, Our Subculture Can Make a Difference, by Dianne Piastro to the large group and address the discussion questions.

Activity B:  Have participants read this article during a break or for homework.  Ask them to be prepared to answers the discussion questions later in the session or during the next session.

Discussion Questions

1.	What are your reactions to this article?
2.	Does the idea of a disability subculture make sense to you?
3.	Many people feel that individuals with disabilities have distinct cultural experiences that bind us just like people in each of society's subcultures, e.g., women, minorities of different color or ethnic origin, and seniors.  What are they?
4.	Could the recognition of a disability culture also contribute to the increased self esteem of a person with a disability?
5.	How do people with disabilities "live differently in our society?"
6.	Is it important to get beyond seeing disability as only a medical problem?  Why?
7.	Does disability contribute strengths and deepening values to one's life?  If, yes, give some examples?
8.	Why do some individuals have trouble identifying as a person with a disability?
9.	How do people with disabilities who say they have nothing in common with other people with disabilities isolate themselves from support?
10.	Some say if they were given the choice of being able to discard their disability tomorrow, they would rather keep their disability.  How do you feel about this?

PURPOSE:
Explores the various elements of disability pride.

Stimulates discussion about the concept of disability culture and the disability experience.

Examines how the concepts of disability pride and disability culture can contribute significantly to people' s comfort with and ability to get involved with disability rights and advocacy.

OUR SUBCULTURE CAN MAKE A DIFFERENCE

Dianne B. Piastro, Guest Writer

Webster' s New Twentieth Century Dictionary defines subculture as "a) a group (within a society) of persons of the same social or economic status. . . having its own interests, goals, etc; b) the distinct cultural patterns of such a group."

Culture (from Latin "cultura"- to cultivate and care for) is the improvement and refinement of the mind and emotion; the concepts, habits, skills and institutions of a given people in a given period.

Disability subculture implies there is a group identity for people who are divergent from our nondisabled society's norm.  However, it goes deeper than individual physical differences.

When people identify themselves as part of the disability subculture, they are acknowledging that they are different-not inferior-and saying that living differently in our society has positive experiences as well as the negative ones of struggling against the social stigmas and barriers that exist.

There is strength in sharing common emotions, interests and goals.  As more people do so, declaring you have a disability will reflect pride and society will respect people who do so, declaring you have a disability will reflect pride and society will respect people who actively integrate disabilities into their lives.

Unfortunately, many individuals with disabilities resist associating with others who are disabled.  This is a problem that pervades today's disability movement, and it is everyone's loss.

If you can get beyond seeing disability only as an individual' s medical problem which needs to be cured or overcome and think of it in terms of how a group of persons interacts with society and deals with the environment, disability subculture becomes apparent.  To identify with a group is to accept its reality as your own.  Many people, whether their disability is visible or not, mild or severe, refuse to identify with this subculture because they fear the social stigma as well as the usual lower economic status that goes with being identified as disabled.  Such distinct cultural experiences bind persons in each of society's subcultures:  minorities of different color of ethnic origin, the elderly and people who are disabled.

Many who don' t want to recognize this bond work very hard to avoid the stigma by saying they don't think of themselves as disabled, that they're just like everybody else-not like those other cripples.  I submit, however, that this only perpetuates the stigma by buying into society' s devaluation of disabled people.

It is sad when people try so hard not to be something that is a fact of life for them.  In doing so, they isolate themselves from the majority culture as well as the disability subculture, of which they also are a part.  The majority culture won't really allow disabled people to forget their difference, even though many think they will be accepted if they just work hard enough to be what that culture values-looking youthful and physically perfect, appearing prosperous and maintaining total independence.

When you recognize the strengths and deepening values that disability contributes to your life, you realize your self-esteem no longer has to be based on the majority culture' s standards of perfection.  But we cannot reach a state of dignified coexistence in a predominantly nondisabled society if many of us continue to deny that an integral part of themselves is important and valid.

People who have a disability and say they have nothing in common with other disabled people are a puzzle.  If their personal goals include dignified and full access to society as equal citizens, what is so repugnant about openly sharing that goal with other disabled people?  No matter why that access is denied, whether it is due to a chronic illness, or an orthopedic, hearing, vision, speech or mental disability, its denial, and the social penalties that go with that denial, is something shared by all who experience it.  The disability subculture is not new; it has always existed.  It means a lot to people who acknowledge they are well-centered and valuable because they have a disability, not in spite of it.

EXERCISE 3

High School Reunion

ESTIMATED TIME:
25-40 minutes

FORMAT:
Small groups break up according to the decade each person was in high school or would have been in high school (90's, 80's, 70's, 60's, 50's, 40's, etc.).  If everyone happens to have been a part of the same one or two decades, then divide them into groups of 4-7 people.

HANDOUT:
Examples of Symbols of Disability Culture (Optional)

ACTIVITY:
Ask each group to identify (and record on a flip chart) examples of disability culture and disability history which occurred during their assigned time period (events, issues, demonstrations, television, films, role models, publications, advocacy, legislation, songs, humor, T-shirts, bumper stickers, posters).

If they can not think of any, get them started by reading a few examples from the Examples and Symbols of Disability Culture list.

PURPOSE:
Illustrates the breadth and depth of disability experiences.

EXAMPLES AND SYMBOLS OF DISABILITY CULTURE

Events/Issues/Demonstrations:

	1980's:  Gallaudette's Board of Directors was forced to change their decision regarding hiring a "hearing president"
	Elizabeth Bouvia/assisted suicide issues
	Zsa Zsa Gabor' s protesting having to perform to Philadelphia which included people with developmental disabilities.
	International Year/Decade of Disabled
	Disability Pride Parade--Boston Commons
	Louis Harris Polls on disability
	1930's:  League of Physically Handicapped (militant group people with disabilities in Washington, D.C. and New York City.

Films:

	Driving Miss Daisy
	Born on the 4th of July
	Gaby
	My Left Foot
	Coming Home
	Whose Life is it Anyway?
	Best Years of Our Lives
     Bright Victory
	The Miracle Worker
	Long Ago Tomorrow
	Night Moves
	Love is Never Silent
	Children of a Lesser God
	The Men
	Waterdance
	One Flew Over the Coo-Coo's Nest
	Charlie
	David and Lisa
	Sybil
	Patch of Blue
	Butterflies are Free
	I Never Promised You a Rose Garden

Posters:

America Needs All Its Citizens--ILRU four poster series

Television:

LA Law--80's and 90's
Reasonable Doubt--90's
Life Goes On--80's and 90's 
Northern Exposure--90's 
Ironsides (where crimes occurred in accessible environments!)--70's The Fugitive (mysterious one-armed murderer)--60's 
Fantasy Island

Role Models/Prominent People with Disabilities/Heroes:

Jim Abbott
Adrienne Asch
Beethoven
Mary Cassette
Ray Charles
Justin Dart
Dega
Del Greco
Robert Dole
Jose Feliciano
Ann Finger
Lex Frieden
Gorky
Stephen Hawking
Judy Heumann
Homer
Daniel Inouye
Jerry Jewel
Bob Kerry
Toulouse Latrec
Marlee Maitlen
Henri Matisse
Milton
Claude Monet
Christopher Nolan
Flannery O'Connor
Itzhak Perlman
John Ritter
Ed Roberts
Franklin Roosevelt
Schumann
Tom Sullivan
Harriet Tubman
George Wallace
Stevie Wonder
Irving Zola

Organizations:

ACCD--American Coalition of Citizens with Disabilities ADAPT--American Disabled for Attendant Programs Today NCIL--National Council on Independent Living

Publications:

    Disability Rag			   Mainstream Magazine
    Accent on Living             Spinal Network
    This Brain Has a Mouth       Deaf Life
    The Monitor

Advocacy/Legislation:

	1968--Architectural Barriers Act
	1970--Urban Mass Transit Act
	1973--Rehabilitation Act (Section 504)
	1975--Developmental Disabilities Bill of Rights Act (P&As established)
	1975--P.L. 94-142, Education of All Handicapped Children Act
	1978--Rehabilitation Act Amendments (Title VII, Part B)
	1983--Rehabilitation Act Amendments (Title VII Part A)
	1985--Mental Illness Bill of Rights Act (P&AS Cover MI)
	1986--Rehabilitation Act Amendments ("Consumer control" For Title VII Part B, Supported Work)
	1988--Civil Rights Restoration Act (organization or corporation receiving federal funds may not discriminate in any programs)
	1988--Fair Housing Act Amendments (coverage for people with disabilities and universal design in new construction 	provisions)
	1990--Americans with Disabilities Act (comprehensive civil rights act dealing with:  employment, public accommodation, transportation, communication, etc.)

Songs:

Jeff Moyer, Do You See Me As An Equal (Jeff, is a songwriter, folksinger, guitarist who also plays the harmonica.  He is a disability activist who is blind and lives in Cleveland, Ohio.) Distributed by:  Prentke Romich Corporation, 1022 Heyl Road, Wooster, OH 44691, (216) 862-2700.  Published by:  Music From the Heart, 670 Radford Dr., Cleveland, OH 44143, (216) 449-4652

Fred Small, The Heart of the Appaloosa, (Fred is a political folksinger from Boston).  Special song:  TaLking Wheelchair Blues, Identification #:  Rounder C-4014.  Distributed by:  Rounder Records, One Camp St., Cambridge, MA 02140

Elaine Kolb, We Will Ride, Dignity and Pride, A Crip Can Be Hip, Sideshow, Doin' The Best We Can, Let's Get Together, Rolling Freedom Riders.  Four tapes of disability songs:  available from:  Elaine Kolb, 265 College Street, 1 lP, New Haven, CT 06510

Holly Near, Singing For Our Lives, Copyright 1979 Hereford Music (ASCAP)

Judy Small, Speaking Hands, Hearing Eyes, Album:  Mothers, Daughters and Wives, Copyright 1984 Hereford Music (ASCAP) identified by Steven Brown, World Institute on Disability (WID).

Cat Stevens, Moon Shadow:  "He has MS which is what his 'Moon Shadow' that's 'following' him is . . . ('and if I ever lose my eyes . . . I won't have to cry no more'). I think it's an amazingly 'up' tone for a non-movement-based person; very philosophical," says Marilyn Golden, Disability Rights Education and Defense Fund (DREDF).

Humor:

CP accent
John Callahan' s book of cartoons--Don 't Worry, He Won't get Far On Foot

Bumper Stickers\T-shirts:

"ADAPT OR PERISH"
"READY, WHEELING & ABLE"
"MY BODY MAY NOT BE PERFECT BUT I HAVE SOME TERRIFIC PARTS "

Other:

Revolution in consciousness:  The 60's represented the invisibility of disability--the 80' s represent a new openness, visibility, "out of the closet"--turning negative myths into positive myths--changes in how people with disabilities define themselves--defining disability in non-medical ways--transitioning from a passive, quiet group to a activistic and politicalized community--not apologizing for one's disability.

The hierarchical put-down:  Feeling good about self by making others feel bad about themselves.  Discarding the hierarchy of disability:  "People with CP, but mentally alert"--"you may have CP, but be thankful you are not deaf or mentally retarded."

Many people who are deaf see "deaf" with a capital "D" as a word of pride and insist that it be capitalized.  They call themselves, "culturally deaf with a capital "D."

EXERCISE 4

Disability Culture Experiences on Video

ESTIMATED TIME:
30-40 minutes

FORMAT:
Large group

HANDOUT:
None

ACTIVITY:
Show a videotape illustrating disability pride and culture issues.  Conduct a group discussion focusing on reactions to the video.  Ask if participants can identify examples of disability pride or disability culture in the video.

Choose among these videos:

1. Ed Roberts 60 Minutes tape, approximately 17 minutes.
2. Tell them I'm a Mermaid, approximately 22 minutes.

PURPOSE:
Stimulates thinking about disability pride and disability culture and the various forms in which it can be represented.

EXERCISE 5

The Bargain

ESTIMATED TIME:
60 minutes

FORMAT:
Large group

HANDOUT:
Article:  The Bargain and Discussion Questions

ACTIVITY:
Cultivate in-depth discussion regarding the "disability
experience."

Give the group time to read the article or have group read it for homework, think about the discussion questions, and then discuss at next session.

PURPOSE:
Elaborates upon and reviews key disability pride and disability culture issues.

Explores how awareness of our experience of living and coping with disability can contribute to a personal sense of disability pride.

Considers how disability pride and disability culture can contribute to a strong sense of self worth and self-empowerment.

Examines the various elements of disability pride and disability culture.

Explores how the concepts of disability pride and disability culture can contribute significantly to people' s comfort with and ability to get involved with disability rights and advocacy activities.

THE BARGAIN
By Mary Johnson

"This is a revolt against a system based on the assumption that deaf people have become like hearing people, and have to fit into the dominant hearing society."

The speaker was from Deaf Pride!, a Washington, D C. based organization whose purpose is pretty clear from its name.  The occasion was the protest at Gallaudet University which culminated in the first-ever appointment of a deaf president.
For a few brief days in March 1988, it seemed the entire world
understood the "revolt" the speaker referred to.  What remains of that knowledge a year and a half later?  What's happened to that pride?

The speaker that March day was deaf.  But others with disabilities echo her belief that we indeed live in a system based on the assumption that disabled people-whatever the disability - have to become like nondisabled "normal" people - or at least keep striving to be "normal" - in order to be essentially OK.  "Overcoming their handicaps" is what it's called; it's the basis of our culture's "bargain" with those who incur disability.

Paul Longmore, a historian of the disability rights movement, outlines The Bargain this way:

"The non-handicapped majority says, in effect, 'we will extend to you provisional and partial toleration of your public presence - as long as you display a continuous cheerful striving toward "normalization ." '

" 'Cheerful' is the key word here," Longmore points out.  Disabled people can't complain, can't whimper--and certainly can't protest.  That's not part of The Bargain.

Franklin Delano Roosevelt struck this bargain with society, says Longmore, and "succeeded in selling it as a new image of disability to the American public."  It became "the preferred, even the required" image, he says.

This bargain could only be struck in a society that viewed disability as a transgression, something the disabled person could, with effort, "manage" and control--"a private, emotional or physical tragedy best dealt with by psychological coping," Longmore says.  This view of disability has been called the "medical model":  it sees the disability itself as the problem, to be dealt with in private, something between doctor and patient.

What price do we as disabled people pay for agreeing to The Bargain?  Quite a bit--including our pride.

"The Bargain," Longmore points out, "disallows any collective protest against things like prejudice or discrimination."

"At most," he says, "it permits an effort to 'educate' about 'attitudinal barriers,'" a phrase Longmore considers a euphemism.  ("We use a lot of euphemisms," Longmore notes; "we're allowed to call them 'attitudinal barriers' but never outright 'prejudice' or 'discrimination.'"  That's part of The Bargain too, he says.)

The Bargain FDR struck with society has been forced on three generations of disabled people, says Longmore.  Society likes The Bargain because it fits so nicely with the medical model of disability, which was firmly ensconced in our culture at the time FDR encountered polio.  The Bargain gives disabled people something "useful" to do:  get rehabilitated; strive to be normal.

A moral problem
Society has not always seen disability as a medical problem.  Until a few centuries ago, the presence of disability was considered a moral problem, says Longmore.  Though disabled people, it seems, were always exploited and oppressed, political scientist Harlan Hahn says history suggests that in many societies "the physical differences also been perceived as socially and sexually desirable."

Hahn ventures that people with deformities in medieval society were regarded as highly erotic--so erotic that the Church sought to control the sensuality disability engendered by promoting images of sterile," 'proper' sexuality" within marriage and between "normal" people.

It's only been since the eighteenth century or so--roughly from the time of the Enlightenment--that western society has chosen to see disability as a sickness to be treated and disabled people "as problem cases" to be made to conform to the normal majority.  Today society is fixated on cure as the salvation of disabled people.
 
When disabled people feel genuinely proud of who they are, they can play a significant role as critics of a culture that places inordinate stress on a rather conformist vision of what is aesthetically pleasing.

Fear and loathing in the western world

During the last century, fear that "the feebleminded, the mute and deranged" would breed and propagate more of their deviant culture if allowed to mix spawned efforts to keep people with disabilities isolated from each other or institutionalized and restrained from "breeding." Society needed to protect itself from what was called the "neuropathological family," says Longmore.

Deaf people were forcibly prevented from using sign language by teachers in schools for deaf children, and punished severely for infractions.
By the 1930's, over half the states had adopted sterilization laws on people with some disabilities, says Longmore; during the 1930's in Germany, tens of thousands of people with disabilities were put to death in hospitals by those who became the Nazi doctors, perfecting through these killings techniques that would be later used in concentration camps.
It was into such a time that Roosevelt came with his polio.

'Passing for white'
"We never thought of the president as handicapped," said a Roosevelt family friend quoted by Hugh Gallagher in his book "FDR'S Splendid Deception."  "We never thought of it at all."
Like many successful "overcomers," people who "just happen to have a disability" but who are not seen as "handicapped," Roosevelt had managed to cross the line separating "normal people" from those society considered deviant and had labelled "the handicapped."  Roosevelt had struck The Bargain society needed, so he was considered OK by society.  He was, after all, trying to be "normal."

Countless of us with disabilities strike the same implicit 
bargain with society today.

It's this bargain that has given rise to the countless "help the handicapped" programs of government and private charity, programs whose implicit goal is to help make disabled people more like normal people; that help disabled people "pass for white."

The idea of disabled people being proud of their disability-like Deaf Pride so obviously is--is antithetical to what such groups stand for.  Disabled people in society are afforded grudging acceptance and assimilation only to the extent that they show goodfaith efforts at becoming normal."

The Bargain doesn't allow for protest at injustice.  Protest would suggest that disabled people believe they have rights as disabled people.  According to The Bargain, a disabled person achieves validity only to the extent she attempts to become normal.  If one flaunts one's disability, if one flaunts normalcy, one has no right to decent treatment.

The disability rights movement exposes The Bargain for what is:  a
way of controlling a minority by forcing upon them the physical standards of the majority culture.  It is this which the DeafPride! speaker was rejecting.  This is what the disability rights movement rejects.  It is society which must change, says the movement; not the individual with the disability.  The individual with the disability is all right, disability and all.

Visual displays of physical features convey messages that are just as political as the content of verbal declarations.

This idea, though, still seems radical decades after it was first advanced by people who picked up the 1960's civil rights philosophies of other movements and applied it to their own situation, and saw that fit.  Why has the idea not taken the country's disabled minority by storm?  Why are so many of us with disabilities still so hesitant when it comes to rights?

Harlan Hahn's been exploring this question, too.  In his article, "Can Disability Be Beautiful?"  in the Winter, 1988 issue of Social Policy Magazine, he gave what may still be the best explanation.

"Unlike other minorities," he wrote, "disabled men and women have not yet been able to refute" accusations of "biological inferiority."  Part of the problem, he believes, is that disabled people have been raised by nondisabled parents in a nondisabled environment, and thus have no sense of a shared culture.  Deaf people who sign--particularly deaf people whose parents and relatives are deaf--are among the few groups of disabled people who have a real culture.  Many of those people go to Gallaudet; that's why "revolt" occurred among the deaf students:  they have that sense of community and pride that gave them the strength to challenge the System, that sense of community and pride other, isolated disabled people lack.

Disabled people, says Hahn, lack what he calls a "sense of generational continuity."  This "generational continuity," he thinks, would "allow the legacy of their experience to become an important solace in an uncaring and inhospitable world."

Hahn believes the roots of discrimination and prejudice against disabled people are grounded in what he calls "aesthetic anxiety--the fear of others whose traits are perceived as disturbing or unpleasant."  He thinks this is behind a lot of employment discrimination, for example and he thinks that if disabled people would acknowledge they're being discriminated against because of these kinds of fears, we'd get further as a civil rights movement.

But, says Hahn, "many persons with disabilities have been reluctant to acknowledge" such discrimination.  We don't want people to think we're considered weird or ugly, in other works--so even if that's why we're denied jobs, or a seat in a restaurant--we try to brush off the discrimination we try to "pass."  We've internalized the stigma.

This, of course, is exactly what The Bargain is all about.  We're supposed to feel we're the ones in the wrong; the ones who have to "overcome."

True power

Hahn says people with disabilities will find true power as a group only when we acquire self esteem as disabled people-something The Rag refers to as Disability Cool.  And he believes a reading of history prior to the Enlightenment can give us a way to recapture a pride in what he calls "individuality."

"By reclaiming an aesthetic tradition that originated in one of the earliest eras of human history, and by overturning the moral order of the human body imposed by such authorities as the church and the mass media, it is possible to assert proudly that "disability is beautiful,"' he writes.

The ability to say "disability is beautiful" has "profound social, political and aesthetic implications for nondisabled as well as disabled people," Hahn believes.

When disabled people feel genuinely proud of who they are, they can "play a significant role as critics of a culture that places inordinate stress on a rather conformist vision" of what is aesthetically pleasing.  We are capable, as disabled people, of offering to the world "an alternative model of attraction that would permit both disabled and nondisabled persons to discover enhanced aesthetic satisfaction" in all kinds of ordinary people-"beautiful" or not.

The majority's rather tired and puritanical ideas of "beauty" could go right out the window, Hahn thinks, if disabled people would feel their own power--and project it onto society, rather than accepting society's projections of stigma as we do now.

But to do this, disabled people must reclaim their history.  We must break our side of The Bargain.  We must revolt.
Will it happen?

The Bargain' Discussion Questions

1.	What are your reactions to this article?
2.	What does the author mean by the bargain?
3.	How does the bargain disallow any collective protests against things like prejudice, discrimination, and inequality?
4.	How can people with disabilities break their side of the bargain?
5.	What would have made President Roosevelt a stronger role model for people with disabilities?
6.	Why is it that people who are deaf and sign, particularly deaf people whose parents and relatives are deaf, are among the few groups of people with disabilities who have a real culture?
7.	Why does the ability for some people to say disability is beautiful have profound social, political, and aesthetic implications for people without disabilities, as well as for people with disabilities?

"Most of us still don't feel proud of being disabled....  It is only by embracing our own history that we will break the shackles of self loathing we carry around.  When we settle for compromise .  . . when we try to be 'normal, ' when we fail to protest injustice in order to be accepted, we continue the self loathing. "

Mary Johnson.  The Disability Rag.  September/October 1989

EXERCISE 6

Is There a Disability Culture?

ESTIMATED TIME:
20-40 minutes

FORMAT:
Large group

HANDOUT:
None

ACTIVITY:
Conduct a group discussion around the following statements, asking participants if they agree with the statements.

People with disabilities have a separate culture and a separate history, different from our family members without disabilities and different from our friends without disabilities.

This culture is something we will never fully share with the people to whom we are closest if they do not also have a disability.

People belong to many groups.  Can they also belong to more than one culture?

NOTE TO THE FACILITATOR:
In the closing discussion of this exercise, incorporate the ideas in the following statements:

The concept of disability culture has not been widely discussed among people with disabilities.  The jury is out as to whether or not the concept will be embraced by people who identify themselves as having a disability.  Disability culture, however, needs to be more widely discussed by the disability community.

Dianne Piastro states, in her article, Our Subculture Can Make a Difference, "The disability subculture is not new, it has always existed.  It means a lot of people who acknowledge they are well-centered and valuable because they have a disability, not in spite of it."

PURPOSE:
Explores issues related to the concept of disability culture and the disability experience.

EXERCISE 7

Majority Cultural Goals

ESTIMATED TIME:
15-60 minutes

FORMAT:
Large group

HANDOUT:
Majority Cultural Goals

ACTIVITY:
Distribute copies of the handout, read it aloud to the group, and conduct a discussion focused on their reactions to the statement.

PURPOSE:
Explores issues related to the concept of disability culture and the disability experience.

Majority Cultural Goals

Disability rights activists are calling for the rejection of able-bodied persons ways.  Just as African-Americans have called for the rejection of the white ways, the Hispanic community has stood against Anglo ways, and women are rejecting the "Mommy Track," persons with disabilities have begun to question the logic of designing a life according to able-bodied standards and judgments which say that persons with disabilities are less productive, less positive, less attractive, and less successful; and therefore, fall short of being acceptable.

Persons with disabilities say that if they haven't reached those majority cultural goals, it is because:

1) society has effectively placed barriers in their way; and

2) those goals are themselves defined in distorted ways, and must be defined by persons with disabilities according to their differences from the majority.

Disability is not intergenerational--not usually passed down within a family.  So, disability survival skills and values must be passed down through a culture whereby each generation of persons with disabilities can pass down to succeeding ones, an oral tradition, which points to a disability history which has existed throughout time, and is parallel to, distinct from and intersects with the able-bodied persons history.

--from:  Partnerships and Linkages for Success, Enhancing the Employment Potential of Persons with Disabilities.  Report of the 1989 Los Angeles Regional Conference.  Edited by Sylvia Walker and Charles A.  Asbury.  Printed by The California Governor's Committee for Employment of Disabled Persons.  1990.  Pages 27-28.

EXERCISE 8

The Activist Leap

ESTIMATED TIME:
20-40 minutes

FORMAT:
Large or small group

HANDOUT:
The Activist Leap

ACTIVITY:
Distribute the handout, read it aloud, and discuss its meaning.

NOTE TO THE FACILITATOR:
In the closing discussion of this exercise, you may want to incorporate the ideas in the following statements:

It takes thought and analysis about disability stereotypes, societal values, oppression, pride, and rights to change one' s thinking from an "oppressed, poor undeserving me" self-concept to a self-concept which incorporates the perception of civil rights owed you as a human being.  In spite of individual differences in people' s disabilities, people with disabilities have much in common with each other.  Together, through joint efforts and coalition building, a lot of positive change can occur.

Basically, it is a bold transition in consciousness from depression, anger, and rage to action, oppression and passivity to activism, from being apolitical to being political, and from apologizing about who you are to asking for and demanding rights and services.

PURPOSE:
Explores the concept that disability pride and culture contributes to "the leap," a concept that people with disabilities must understand before they can comfortably become involved in community advocacy.

The Activist Leap

That attitude--one of seeing the disability as personal, the problems as rather embarrassing, and the solutions as forbearance or suffering through, what the jargon would have as "adjusting to it"--is a very, very common one among persons with disabilities.  It does take a leap of logic to comprehend that society has obligations to you, that the issues are ones of civil and human rights.  It takes a further stretch of the imagination to realize that people with other kinds of disabilities do in fact have much in common with you, that together you can make common cause.  These things are not intuitive.  But that leap, that stretch must be taken before one becomes a community activist, before one expresses self-determination at the community level.

--from:  Frank G. Bowe, "Self Determination at the Community Level," from the National Conference on Self-Determination, Arlington, Virginia, January, 1989.

EXERCISE 9

Disability Pride and Culture Summary

ESTIMATED TIME:
For Activity A:  10 minutes
For Activity B:  20 minutes
For Activity C:  15 minutes

FORMAT:
Large or small group

HANDOUT:
Disability Pride Inventory
Disability Culture and Pride--True/False Quiz
Disability Pride Summary

ACTIVITY:
You may choose to conduct all these activities or select one or more.  They can be used in any combination.

Activity A:  Have everyone complete the disability pride inventory and discuss.

Activity B:  Have all participants take the disability culture and pride true/false quiz.  Have individuals put a question mark next to those answers they are unsure about, then discuss their reactions and questions.

Activity C:  Have everyone review the Disability Pride Summary handout and discuss.

PURPOSE:
Allows participants to apply key concepts discussed in this chapter to themselves.

Disability Pride Inventory

Often   Sometimes  Seldom

-----	-----	-----	1. I acknowledge that I am different but not inferior

-----	-----	-----	2. I acknowledge that my disability is an integral, important, and valid part of who I am.

-----	-----	-----	3. I acknowledge that disability is a natural occurrence of the human condition.

-----	-----	-----	4. I acknowledge that I am part of a disability subculture which has a social history.

-----	-----	-----	5. I believe that I do not have to apologize for my disability.

-----	-----	-----	6. I am proud of who I am.

-----	-----	-----	7. I am free of feelings of self-hate and self-depreciation.

-----	-----	-----	8. I claim my disability (examples:  Deaf pride, Gay pride, "Black is beautiful").

-----	-----	-----	9. I have people with disabilities as role models.

-----	-----	-----	10. I seek support from people with disabilities.

-----	-----	-----	11. I am careful and clear about the language and the labels that I use in public to describe disability.

-----	-----	-----	12. I view my disability as problems with the environment rather than a body impairment.

Disability Culture And Pride--True/False Quiz

-----	1. People with disabilities only belong to one culture--disability culture.

-----	2. Disability culture is something that can never be fully shared with people who do not have a disability.

-----	3. Disability culture is fairly new, less than five years old.

-----	4. Disability pride means acknowledging that one is not inferior.

-----	5. People with disabilities have distinct cultural experiences.

-----	6. Disability pride means seeing your disability as a medical problem.

-----	7. Self-esteem should be based on the majority culture's standards of perfection.

-----	8. People who have a disability and say they have nothing in common with other people with disabilities are able to meet society' s standards of perfection.

-----	9. President Franklin Roosevelt was a great example of a person who exemplified disability pride.

-----	10. People who are deaf and sign, particularly those people whose parents and relatives are deaf, are among few groups of people with disabilities who exhibit a very strong culture.

-----	11. When people are generally genuinely proud of who they are, they can play a significant role as critics of a culture that places high value on a rather conformist version of what is aesthetically pleasing.

-----	12. People with disabilities have much in common with each other and together through joint efforts and coalition building can effect a lot of positive change.

DISABILITY CULTURE AND PRIDE
TRUE/FALSE QUIZ ANSWERS

F	1. People with disabilities only belong to one culture--disability culture.

People with disabilities belong to many cultures.

T	2. Disability culture is something that can never be fully shared with people who do not have a disability.

F 	3. Disability culture is fairly new, less than five years old.

It is not new.  Disability culture has been around for years.  It has not always been identified as such.

T 	4. Disability pride means acknowledging that one is not inferior.

T 	5. People with disabilities have distinct cultural experiences.

F 	6. Disability pride means seeing your disability as a medical problem.

Disability pride is thinking of disability in terms of how "we" interact with society and deal with the environment.

F 	7. Self-esteem should be based on the majority culture's standards of perfection.

This denies that an integral part of who we are is important and valid.

F 	8. People who have a disability and say they have nothing in common with other people with disabilities are able to meet society's standards of perfection.

These people isolate themselves from support.

F 	9. President Roosevelt was a great example of a person who exemplified disability pride.

He felt he could only achieve validity by attempting to appear as if he did not have a disability.

T 	10. People who are deaf and sign, particularly those people whose parents and relatives are deaf are among few groups of people with disabilities who exhibit a very strong culture.

They have a sense of community and pride.  It is a sense of community and pride that people with many other types of disabilities, isolated from each other, tend to lack.

T 	11. When people are generally genuinely proud of who they are, they can play a significant role as critics of a culture that places high value on a rather conformist version of what is aesthetically pleasing.

We are capable of offering the world an alternative model of attraction that would permit both people with and without disabilities to discover enhanced aesthetic satisfaction in all kinds of people:  ordinary, unique people, beautiful or not.  The majority's rather tired and puritanical ideas of beauty could go right out the window if and when disabled people feel their own power and project it into society rather than accepting; society 's projections of stigma as we do.

T	12. People with disabilities have much in common with each other and together through joint efforts and coalition building can effect a lot of positive change.

DISABILITY PRIDE SUMMARY

Acknowledging that:

! You're different but not inferior.

! Disability is an integral, important, and valid part of who you are.

! Disability is a natural occurrence of the human condition.

! You are a part of a disability subculture which has a political, economic, cultural, and social history.

! You do not have to apologize for your disability.

! Being proud of who you are and not being burdened by feelings of self-hate and self-depreciation.

! Claiming your disability (examples:  Deaf pride; examples from other groups:  Gay pride, "Black is beautiful").

! Having people with disabilities as role models and seeking support from people with disabilities.

! Being deliberate, careful, and clear about the language and the labels you use in public to describe disability.

! Viewing your disability as problems with the environment rather than a body impairment.  It is the environment which frequently causes the real disability:  Steps into a building prevents an individual with a mobility impairment from applying for a job, taking a course, going shopping; lack of interpreters/brailled or taped material prevent one from communicating.

! Disability pride equals personal liberation from the handicapism of our society.  It is an awareness and analysis of our experience and appreciation of how we have coped with disability and survived.  It is a positive view of who we are.

"People who advocate freedom, yet deprecate agitation, are people who want crops without plowing the ground.  They want the rain without the awful roar of the thunder and lightning.  Without struggle, there is no progress.  This struggle might be a moral one.  It might be a physical one.  It might be both moral and physical, but it must be a struggle.  Power concedes nothing without a demand.  It never did and it never will.  People may not get all that they pay for in this world, but they certainly pay for all that they get."

Black author, speaker, and abolitionist Frederick Douglas (1817-1896)

ABOUT THE AUTHOR

JUNE ISAACSON KAILES has been active as a disability rights advocate and program developer in the independent living movement since the late sixties.  June consults in the areas of disability-related advocacy, public policy, implementing the Americans with Disabilities Act, barrier-free design, independent living center management, training and fund raising.  She is currently working with such local, state, national and international organizations as the National Council on Independent Living, National Council on Disability, United Cerebral Palsy--Government Affairs Department, California Foundation of Independent Living Centers, World Institute on Disability and Maguire Thomas Partners.  During her eight years as Executive Director of the Westside Center for Independent Living (WCIL) in Los Angeles, June established WCIL as one of the largest and most respected independent living centers in the United States.  June is a frequent speaker on independent living and other disability related issues and has authored numerous articles, book chapters, monographs, and training manuals.  Contact information:  June Isaacson Kailes; Disability Policy Consultant; 6201 Ocean Front Walk, Suite 2; Playa Del Rey, California 90293-7556; (310) 821-7080.

ABOUT ILRU

ILRU (Independent Living Research Utilization) was established in 1977 to serve as a national center for information, training, research, and technical assistance for independent living.  In the mid-1980's, it began conducting management training programs for executive directors and middle managers of independent living centers in the U.S. Since 1985, it has operated the ILRU Research and Training Center on Independent Living at TIRR, through which is conducted a comprehensive and coordinated set of research, training, and technical assistance projects focusing on leading issues facing the independent living field.

ILRU has developed an extensive set of resource materials on various aspects of independent living, including a comprehensive directory of programs providing independent living services in the U.S. and Canada.  For more information, contact ILRU; 2323 S. Shepherd, Suite 1000; Houston, Texas 77019; (713) 520-0232, 520-5136 (TDD).

ILRU is a program of TIRR, a nationally recognized, free-standing rehabilitation facility for persons with physical disabilities.  TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities.  Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living.

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