The disability experience module

Part 1

Introduction

Note: This module is currently under review to ensure that it is accessible and up to date. Contents may change.

This module is designed to stimulate discussion about concepts and ideas that shape perceptions and attitudes about persons with disabilities. Depending on your personal background you may have little or no information or experience with people with disabilities. There are myths and stereotypes that exist about people with disabilities. This module is intended to help you reflect on your knowledge of people with disabilities.

At the completion of the module you should be able to:

1. Articulate your attitudes, feelings and beliefs about persons with disabilities
2. Understand how disabilities are part of human diversity

Challenge/pre-module survey

Take a few moments to look at the following questions. This survey is meant to guide you in examining your own thoughts and perspectives about disability.

1. What is the first thought that comes to your mind when you hear the word disability?
2. What has influenced your thoughts about disability?
3. How comfortable or uncomfortable are you when you encounter someone with a disability? Explain your answer.
4. How often do you encounter or interact with people with disabilities? On a daily basis, weekly, monthly or have no encounters regularly with people with disabilities.

Part 2

Disability is natural

Disability concerns all of us. According to Clay Hougthon, Director of Civilian Equal Opportunity for the Department of Defense, ”No one is immune to developing a disability, and almost no one, regardless of race, gender, religion or economic status, will go through life without suffering from some form of physical impairment. It’s truly the equal opportunity situation, and those of us who are disabled are a constant visual reminder of the frailty of each member of the human race. And so, accepting this possibility and adjusting to disability, those are matters that concern us all. (Fleisher & Zames, 2001, p. 109)” (Smart, 2009)

• People with disabilities make up the largest minority group in the United States
• 1 in every 5 Americans is a person with a disability
• Disabilities can be visible or invisible
• It’s the only group anyone can join at any time- in the split second of birth, in an accident, or through an illness
• Disability does not discriminate on the basis of gender, ethnic background, socioeconomic status, religion or sexual preference

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (The DD Act)

PDF

And, as Celeste Adams points out in the following Tedx Talk, disabilities are not a result of sin or fraternization with the devil, but a natural medical issue.

Defining disability

There is no universally accepted definition of disability. Disability can mean many different things. Disability is a socially constructed term that refers to a group of very diverse individuals who may be entitled to services or legal protections due to characteristics related most often to a medical diagnosis.

Medical view of disability

Historically, disability has been most often defined using a medical model. This model views disability as a feature of the person, which requires individual treatment by professionals to ‘correct’ the problem. The idea that people with disabilities need ”fixing” has been central in shaping society’s attitudes and perceptions about persons with disabilities. As a result, people with disabilities are often viewed as tragic and as an object of pity. However, other models of disability have emerged which question the validity of the medical model and have led to an expansion of how society views disability and how people with disabilities see themselves.

Disability categories

Persons with disabilities are often placed in categories with others who have similar disabilities, even though they may be very different. Putting people together because of similar disability traits leads to stereotypes. This also tends to place the focus on the disability and not on the person’s strengths, abilities, assets and resources or unique identity. Disability categories tend to set persons with disabilities apart from the general population more so than most other population categories. For example, people with autism, cerebral palsy and mental retardation are more likely to be grouped together by their disability than by their individual traits. People with these disabilities are as unique as you in their appearance, personal characteristics and likes and dislikes.

Disability language

The language used to talk about or depict persons with disabilities has had a powerful influence in shaping society’s perceptions and attitudes.  Often this language communicates deficit and inferiority when most often people with disabilities do not see their disability as a loss or absence of something.  People with disabilities (PWD) or person with a disability or disabled person have replaced words like ”impaired” or ”handicapped” in some areas but this change has not been universal.

People First language puts the person first and serves to emphasize that the individual’s disability is secondary to them as a person.  It also respects the individual differences among person with disabilities.

She has Down syndrome vs. She’s Down’s

The former is preferable because it indicates that Down syndrome is just one characteristic of the person along with brown hair, female and 5’4”.

Disability images, stereotypes & myths

The media exerts a powerful influence on how we perceive persons with disabilities by the language and images used in movies, TV shows, newspapers, books, and on the Internet. People with disabilities leading everyday lives reject the notion of heroic Super-achievers: ”Supercrips” or ”Pitiable Poster Child”. They want to be recognized for their roles as workers, students, parents, community participants and citizens.

All of us fight against some kind of stereotype and people with disabilities are no exception. Some common myths about people with disabilities include:

• People with disabilities are brave and courageous when in fact adjusting to or living with disability requires adapting to a lifestyle, not necessarily bravery or courage.
• People who are blind acquire a ”sixth sense” when in fact people who are blind develop their remaining senses more fully, but do not have a ”sixth sense”.
• All persons with hearing disabilities can read lips- lip reading skills vary among people who use them and are never entirely reliable
• People with disabilities always need help- many people with disabilities are independent and capable of giving help
• One person cannot help eliminate barriers confronting people with disabilities- in fact everyone (including you) can contribute to change!

Prejudice against people with disabilities

By any standard, people with disabilities have experienced more prejudice and discrimination than any other group in history. People with disabilities have been discriminated against; with that discrimination ranging from minor embarrassment and inconvenience to relegation of a life of limited experience and reduced social opportunity and civil rights. Persons with disabilities have been segregated, sterilized, or killed in almost every culture throughout history (Smart, 2009).

Poor treatment of people with disabilities, including infanticide and execution, has been a problem for much of history. In many cultures the tradition of infanticide continues today because disabled infants are considered to be of no value to the family or the economy.

The following video is a documentary about modern disability hate crimes.

Part 3

Changing language; changing perspective

There has been an encouraging trend to change language in relation to disability. Many people who work and advocate for the rights of people with disabilities are replacing technical and definitional terms with language that is much more descriptive so that everyone understands that language describes people (people-first language) rather than focusing only on the disability. Conscious efforts are made to avoid language that presents people as victims or ”suffering”. Language is used which conveys meaning correctly and creates positive attitudes about people with disabilities that emphasizes their strengths and abilities.

Here are some examples of how to talk about people with disabilities.

Say:

• He has a cognitive disability
• She has a congenital disability
• He has a brain injury
• She uses a wheelchair
• He communicates with a device
• He receives special education

Combating prejudice & discrimination

Every one of us has a self-identity and a group identity.

Write down a few words that depict your self-identity and then a few to depict your group identity. Did you find that you may identify with a number of different groups?

Think about how you would feel if you were only allowed to interact, work or be educated with people from one particular group.

Persons with disabilities also have a self-identity that sometimes gets ignored in the larger group identity of ”disability”. Making people with like disabilities live together or be educated together in self-contained classrooms is the result of focusing on the disability grouping and less on the person’s self-identity or other groups that they include themselves in. The move towards inclusive schools and inclusive communities is a way in which prejudice and discrimination against people with disabilities can be overcome.

Independence and choice

Take a few moments to think about these questions.

1. As an adult what choices do you make on a daily basis about your life?
2. How do you make decisions about your daily activities or choices you may have each day?
3. What resources do you use when you are unsure of the decisions you should make?

As a person living independently you have the choice of taking risks in your life that allow you to stretch who you are and what you may become.  Persons with disabilities often are not allowed to take risks and try something new or different because of controls imposed upon them by others.  Often adults with like disabilities are forced to live together in group homes or nursing homes without having a choice about where they live or with whom they live.

Self-determination

In Disability concepts self-determination is defined as ”the absence of external constraints, the ability to direct one’s activities, and the power of conscious choice between significant, known alternatives.” (Depoy & Gilson, 2004 p.158). Every person has the right to determine for themselves their path in life and to be empowered to achieve independence, integration and inclusion to the greatest extent possible by being provided opportunities to learn the skills needed and the chance to put those skills into action (Sands & Wehmeyer, 1996). In other words, persons with disabilities should have the power to make decisions about their living arrangements, school and/or job placement, social networks and their treatment (if treatment and/or intervention is necessary).

Like you, a person with a disability is the ”expert” about his or her own needs and desires.

This next video segment gives you a glimpse into the technology needed to enable someone with a disability to function independently in his or her environment. However, it also raises the question of how policies can limit choices of where people who require supports and technology can live.

Universal access for learning & living

People with disabilities deserve to have access to technology that can allow them to live the life they choose.  Removal of barriers to learning and living include:

1. Architectural design for full accessibility and participation
2. Consumer products that permit the greatest degree of access and usability for everyone
3. Assistive technology for mobility, communication, hearing and vision
4. Educational curriculum that allows for flexibility in presentation, expression and engagement with the learning process

Disability rights

People with disabilities are challenging the ways in which society sees them.  They are asserting their rights, not seeking medical cures and they are taking a stand for equality, independence and dignity (Shapiro, 1993).  Like other civil rights movements, the disability rights movement continues to shatter the misconceptions about disability and proclaim the right to be included and equal in society.

Thoughts and reflections

Are you interested in sharing your thoughts and reflections about this module with us? Has this module helped to change your perceptions of disability and persons with disability?

Email us at ihd@nau.edu . We would love to hear from you!

Resources & additional information

The Institute for Human Development (IHD)

Also see the following:

• No Pity (1993) by Joseph Shapiro; Times Books/Random House
• Mouth Magazine POB 558 Topeka, KS
• Ragged Edge: The Disability Experience in America; Avocado Press
• New Mobility, POB 15518 N. Hollywood, CA

References

Depoy, S.F. & Gilson, E. (2004). Rethinking Disability: principles for professional and social change. Belmont, CA: Thomson/Brooks/Cole.

Sands, D.J. & Wehmeyer, M.L. (1996). Self-Determination across the lifespan: Independence and choice for people with disabilities. Brooks Publishing.

Smart, Julie (2009) Disability, Society and the Individual 2nd Ed. Gaithersburg, MD: Aspen Publications.