Understanding the Culture of Disability

by Steven Wilson, VisionAware Peer Advisor

As a peer advisor with vision and hearing loss related to Usher Syndrome, I am introducing a new series of posts on VisionAware related to disability pride and culture. As noted in my inaugural post on Models of Disability, I am currently enrolled in Disability Studies at my school and have gotten very interested in this topic.

Accepting Our Differences and Celebrating Our Individuality

We, as a societal whole, need to first learn to be able to accept one another as uniquely different, celebrate our individuality, and recognize the gifts that we can all contribute as well as learning of varying perspectives and talents each and every one of us can share before we cross the terrain of genetically modified human beings. None of this can begin to happen until we all accept ourselves as being only one of a kind, distinct with exceptional skills that ought to be utilized in lifting each other up within our communities. In the words of Helen Keller, "We are never truly happy until we try to brighten the lives of others" and by doing so, we can all find happiness within and with everyone else.

Did You Know?

Disability Studies problematizes "people first" language. Person first language may be a good starting point as the premise of this perspective is that we are viewing the individual and not the disability. However, we can’t assume this is how a disabled person prefers to be identified because this language tends to take away a part of a person’s identity. It is important to get to know and communicate with the individual and learn how a person may prefer to be identified. At the same time, it is important to understand that a disability does not define the person rather a part of their unique identity.

Key Concepts About Disability

The following terms and concepts are from my disability classes, and credit must be given to the professors of classes I’ve taken thus far. Keep in mind, I’m but a mere undergrad, while there are scholars attaining doctorates. My sincere thanks go to Dr. Sue Kroeger and Toni Saia, ABD, for these terms, concepts, and definitions in relation to disability studies/culture. This is an excellent source list to refer to.

  • Labels: Labeling is the process whereby descriptions are attached to individuals or groups which, in turn, guides the attitudes and behavior of others towards them.
  • Stereotype: A stereotype is a widely held but fixed and oversimplified image or idea of a particular type of person or thing.
  • Medical Model of Disability: The Medical Model is the idea that disability is centered in the individual; individuals with disabilities need to be cured or fixed.
  • Social Model of Disability: The Social Model is a concept that an individual has an impairment—lacking part or all of a limb or having a defective limb, organ, or mechanism of the body. Disability is in the environment—people who have physical impairments are excluded from participation in the mainstream of social activities due to physical and attitudinal barriers in the environment.
  • Disabilities Studies: Reframes the study of disability by focusing on it as a social phenomenon, social construct, metaphor, and culture utilizing a minority group model.
  • Culture: The attitudes and beliefs about something that are shared by a particular group of people or in a particular organization.
  • Values: Cultural beliefs and the behaviors that support them are taught by schools, families, the media, and other institutions. The beliefs are often referred to as values.
  • Social Norm: Expectations about what behavior, thoughts, or feelings are appropriate within a given group within a given context.
  • Erik Erikson’s Psychosocial Stages of Development: A lifespan model of development which puts a great deal of emphasis on the adolescent period because Erikson felt it was a crucial stage for developing a person’s identity.
  • Albert Bandura’s Social Learning Theory: Most human behavior is learned observationally through modeling.
  • Conformity: Yielding to or "going along with" a perceived social norm.
  • Resiliency: A concept that we are all born with innate resiliency with the capacity to develop the traits commonly found in resilient survivors: social competence (responsiveness, cultural flexibility, empathy, caring, communication skills, and a sense of humor); problem-solving (planning, help-seeking, critical and creative thinking); autonomy (sense of identity, self-efficacy, self-awareness, task-mastery, and adaptive distancing from negative messages and conditions); and a sense of purpose and belief in a bright future (goal direction, educational aspirations, optimism, faith, and spiritual connectedness).
  • Spirituality: A broad concept with room for many perspectives. In general, it includes a sense of connection to something bigger than ourselves, and it typically involves a search for meaning in life. As such, it is a universal human experience—something that touches us all. People may describe a spiritual experience as sacred or transcendent or simply a deep sense of aliveness and interconnectedness.

Defining Attitudinal Barriers

As presented by the National Collaborative on Workforce and Disability, people with disabilities encounter many different forms of attitudinal barriers:

  • Backlash: Many people believe individuals with disabilities are given unfair advantages such as easier work requirements. Employers need to hold people with disabilities to the same job standards as coworkers though the means of accomplishing the tasks may differ from person to person. The Americans with Disabilities Act (ADA) does not require special privileges for people with disabilities just equal opportunities.
  • Denial: Many disabilities are "hidden," such as learning disabilities, psychiatric disabilities, epilepsy, cancer, arthritis, and heart conditions. People tend to believe these are not bona fide disabilities needing accommodation. The ADA defines "disability" as an impairment that "substantially limits one or more of the major life activities." Accommodating "hidden" disabilities that meet the above definition can keep valued employees on the job and open doors for new employees.
  • Fear: Many people are afraid that they will "do or say the wrong thing" around someone with a disability. Therefore, they avert their own discomfort by avoiding the individual with a disability. As with meeting a person from a different culture, frequent encounters can increase the comfort level.
  • Hero Worship: People consider someone with a disability who lives independently or pursues a profession to be brave or "special" for overcoming a disability. But most people with disabilities do not want accolades for performing day-to-day tasks. The disability is there; the individual has simply learned to adapt by using his or her skills and knowledge just as everybody adapts to being tall, short, strong, fast, easy-going, bald, blonde, and so on.
  • Ignorance: People with disabilities are often dismissed as incapable of accomplishing tasks and not given the opportunity to display their skills. In fact, people with disabilities often accomplish the same tasks and have the same experiences as those without disabilities. People with quadriplegia can drive cars and have children. People who are blind can tell time on a watch and visit museums. People who are deaf can play baseball and enjoy music. People with developmental disabilities can be creative and maintain strong work ethics.
  • Inferiority: Because a person may be impaired in one of life's major functions, some people believe that individual is a "second-class citizen." However, most people with disabilities have skills that make the impairment moot in the workplace.
  • Pity: People feel sorry for the person with a disability, which tends to lead to patronizing attitudes. People with disabilities generally don't want pity and charity just an equal opportunity to earn their own way and live independently.
  • The Spread Effect: People assume that an individual's disability negatively affects other senses, abilities, or personality traits or that the total person is impaired. For example, many people shout at people who are blind or don't expect people using wheelchairs to have the intelligence to speak for themselves. Focusing on a person's abilities, rather than his or her disability, counters this type of prejudice.
  • Disability Stereotypes: The other side of the spread effect is the positive and negative generalizations people form about disabilities. For example, many believe that all people who are blind are great musicians or have a keener sense of smell and hearing, that all people who use wheelchairs are docile or compete in Paralympics, that all people with developmental disabilities are innocent and sweet-natured, or that all people with disabilities are sad and bitter. Aside from diminishing the individual and his or her abilities, such prejudice can set too high or too low a standard for individuals who are merely human.
  • Breaking Down Barriers: Unlike physical and systematic barriers, attitudinal barriers that often lead to illegal discrimination cannot be overcome simply through laws. The best remedy is familiarity—getting people with and without disabilities to mingle as coworkers, associates, and social acquaintances. In time, most of the attitudes will give way to comfort, respect, and friendship.

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