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




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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.
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