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 a disability studies program at my school and have become very interested in this topic.
Accepting Our Differences and Celebrating Our Individuality
We, as a societal whole, need to first learn to accept one another as uniquely different, celebrate our individuality, and recognize the gifts, varying perspectives, and talents each and every one of us can share and contribute. This can only happen when we all accept ourselves as being one of a kind, distinct with exceptional skills, and utilize these attributes to lift each other up within our communities. In the words of Helen Keller, “We are never really happy until we try to brighten the lives of others,” and by doing so, we can all find happiness within and with everyone else.
The Problem with “People First Language”
In the realm of disability studies, there is a problem with the concept of “people first language.” The premise 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 part of that person’s identity. It is important to get to know and communicate with the individual and learn how that person may prefer to be identified. At the same time, it is important to understand that a disability does not define the person. Rather, it is 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 I’ve taken thus far and the resources I have used to learn this material. My sincere thanks go to Dr. Sue Kroeger and Toni Saia, ABD, for these terms, concepts, and definitions in relation to disability studies/culture.
- 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” (Swain, French, & Cameron, 2003).
- Stereotype: “A stereotype is a widely held but fixed and oversimplified image or idea of a particular type of person or thing” (“Stereotype,” 2017).
- 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” (The University of Texas at Austin, 2017).
- 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 (McLeod, 2008).
- Albert Bandura’s Social Learning Theory: Most human behavior is learned observationally through modeling (McLeod, 2011).
- 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)” (Benard, 1991).
- 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” (“What Is Spirituality,” 2016).
Defining Attitudinal Barriers
Individuals with disabilities encounter many different forms of attitudinal barriers. Outlined below are a few examples of such barriers. This information was retrieved from “Attitudinal Barriers for People with Disabilities” from the National Collaborative on Workforce and Disability. Visit their website for additional information on attitudinal barriers.
- Backlash: The belief that individuals with disabilities are given unfair advantages in the workplace. Employees with disabilities need to be held to the same job standards as non-disabled coworkers
- Denial: People tend to believe disabilities such as learning and psychiatric disabilities, epilepsy, cancer, arthritis, and heart conditions are hidden and therefore are not bona fide disabilities needing accommodation under the Americans with Disabilities Act
- Fear: Many people often avoid individuals with disabilities because they are afraid that they will say or do the wrong thing and offend the person with a disability
- Hero Worship: Individuals with disabilities who live independently or pursue a profession are characterized as brave or special for overcoming their disability. However, “most people with disabilities do not want accolades for performing day-today tasks.” The individual with a disability has simply adapted to their situation (“Attitudinal Barriers,” 2015).
- Ignorance: Individuals with disabilities are often dismissed as incapable even though they can accomplish the same tasks as their non-disabled peers with a few adaptations
- Inferiority: The belief that an individual with a disability is a “second-class citizen” because they may be impaired in one of life’s major functions (“Attitudinal Barriers,” 2015).
- 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” (“Attitudinal Barriers,” 2015).
- The Spread Effect: The belief “that an individual’s disability negatively affects other senses, abilities, or personality traits or that the total person is impaired” (“Attitudinal Barriers,” 2015).
- Disability Stereotypes: The opposite of the Spread Effect, the belief that an individual’s impairment in one of life’s major functions increases the performance of another function. For example, the belief that individuals who are blind or visually impaired have better hearing as a result of their visual impairment
Is There Pride in Being Blind or Visually Impaired?
Attitudinal barriers for people with disabilities. (2015). Retrieved from http://www.ncwd-youth.info/attitudinal-barriers-for-people-with-disabilities
Benard, B. (1991). Fostering resiliency in kids: protective factors in the family, school, and community. Portland, OR: Western Center for Drug-Free Schools and Communities.
McLeod, S. (2008). Erik Erickson. Retrieved from https://www.simplypsychology.org/Erik-Erikson.html
McLeod, S. (2011). Bandura – social learning theory. Retrieved from https://www.simplypsychology.org/bandura.html
Stereotype. (2017). Retrieved from https://en.oxforddictionaries.com/definition/stereotype
Swain, J., French, S., & Cameron, C. (2003). Controversial issues in a disabling society (pp.12). Philadelphia, PA: Open University Press.
The University of Texas at Austin, Texas Center for Disability Studies. (2017). Disability studies overview. Retrieved from https://disabilitystudies.utexas.edu/disability-studies-overview
What is spirituality. (2016). Retrieved from https://www.takingcharge.csh.umn.edu/what-spirituality