What is disability? I used to think this was a relatively simple question. I have grown to understand that it is complex and confusing, and, as I study, my definition keeps changing, often with each new article I read.
Disability is a social construct that results in and from society’s responses to a person who has an impairment. Disability is not an individual’s sole identity or a problem within the individual to be solved; rather, it is basically two layers of impairment. An individual has an impairment, and the society and culture that person lives in also has an impairment. Sometimes the impairment within the person can be treated, but whether or not that is necessary is not the focus of this paper. The impairment of society—its inappropriate responses to people with impairments—can and must be remedied.
If an individual has a disability, it should be recognized that they have an impairment which can be physical or intellectual. Although the deficit model has been largely discredited, it still offers insight. Pfeiffer states that the impairment model for disability studies is seen as a deficit model because the impairment is in the individual while the social structures produce the disability. The impairment would affect the individual’s life regardless of society’s response or interaction with it. Disability exists because there was an impaired response in the first place.
However, it is important to remember when studying the philosophical implications of disabilities that society’s impaired response is not what most people will be referring to when they mention a particular disability. The word, “disability,” usually refers to an identifiable impairment in an individual. Most people would say, for example, that Down syndrome is a disability, just like cerebral palsy or blindness is a disability. The medical model upholds the more traditional view that impairment and disability are one and the same. Within the medical model:
Disabled people are defined as that group of people whose bodies do not work; or look different or act differently; or who cannot do productive work. The key elements of this analysis are performing and conforming: both raise the question of normality because this approach assumes a certain standard from which disabled people deviate (Shakespeare, p .95).
The problem with this is that the medical model is saying a person with a disability deviates from the norm. This is where the medical model arguably takes liberties as the impairment is not the identity. Impairment may cause a deviation from what is the typical expectation, but to classify a person with a disability as a different kind of person or as abnormal is devaluing to the person and unfair.
The focus of the medical model is that there is something wrong with people who have an impairment. They are inherently “defective” and something should be fixed; if improvability is not possible, they are accepted as lesser human beings. The disability (perception) is due to the impairment (personal characteristic). Often, when people say “disability,” but mean “impairment,” they may not realize what they actually mean. They are referring to the medical condition that in some way functionally impedes the individual in their daily life.
There is a secondary level of impairment which uses the term “disability.” This impairment is social. It is not that the person with the disability is necessarily socially impaired; rather, the society is impaired in its response to people with disability. Societal impairment can become just as significant to live with as the diagnosable impairment that led to the disability status.
Oliver has stated: “Disability is a social state and not a medical condition” (p. 3). Disability is a social construction. Again quoting Shakespeare:
…the social model, which focuses on the disability as a relationship between people with impairment and a discriminatory society: disability is defined as the outcome of disabling barriers imposed by environmental or policy intervention (p. 96).
According to the social model, society creates disability by discriminating against individuals with impairments. I agree with this. This social sense is easiest to see when an individual’s impairment is not a functional impairment; nevertheless, that person is still treated with stigma and discrimination due to that impairment. The following quote illustrates this:
The power of culture alone to construct a disability is revealed when we consider bodily differences—deviations from a society’s conception of a “normal” or acceptable body—that, although they cause little or no functional or physical difficulty for the person who has them, constitute major social disabilities. An important example is facial scarring, which is a disability of appearance only, a disability constructed totally by stigma and cultural meanings. (Wendell, p. 44).
Stigma is one of society’s inappropriate responses which leads to discrimination and stereotyping. According to Erving Goffman, each person has a social identity, and when that identity lumps him into a less-desirable category of social identity he, “is thus reduced in our minds from a whole and usual person to a tainted, discounted one” (Goffman, p. 7). This thought, this reduction in the minds of observers, is stigma. Stigma is easily internalized, and individuals begin to discredit themselves in the way society has or the way they expect society to respond. Therefore, the result of this self-stigmatization is shame (Allen).
Instead of perpetuating stigma and stereotypes, we need to encourage acceptance. In Overcoming Stigma, Jon Allen writes: “If we are to refrain from stigmatizing, the first step is mentalizing—being aware that we are stereotyping and being aware of the impact of that stereotyping process on our behavior and relationships.” We can only change our own mental habits once we recognize them; then, there is a process of retraining our thoughts and attitudes with the hope of influencing society away from stigmatizing and stereotyping.
In contrast with stigma, which can be difficult to address, individuals with disabilities also face discrimination. This can be in the form of laws, policies, or even in unwritten accepted practices. Devlin and Pothier wrote about the critical theory of dis-citizenship, where an individual is received as a citizen whose rights are less than those of the typical population. Speaking of the Canadian population, the authors state that “not all share equally in the good life, or feel adequately included. Among those who face recurring coercion, marginalization and social exclusion are persons with disabilities” (Devlin & Pothier, p. 1).
Taken to extremes, this discrimination, historically and currently, has been taken so far as to see a person with a disability as a person who does not deserve to live. The modern practice of eugenics and the accessibility of abortion (and arguably euthanasia) have faced parents and caregivers with the decision of whether the quality of a person’s life is worth supporting. One disturbing quote from John Sulston, a leading geneticist in Britain states: “If we can select children who are not going to be severely disadvantaged then we should do so” (Armer, p. 2). Abortion is not only considered, but often presented to parents as the only reasonable option in the case of genetic disorders. “It is this blending of eugenic ideology (whether openly acknowledged or not) and genetic science that is here thought of as ‘eugenetics’” (Armer, p. 2).
This devaluing of human life to the point of extermination is what Wolfensberger addresses in the 18th of his 18 wounds. This wound is defined as: “Being the object of brutalization, killing thoughts and deathmaking” (McNair and McNair, p. 1). These wounds start with something as simple as a bodily impairment, and under the influences of society they can spiral out of control, all the way down to where people approve the death of a person with impairment.
Normalization, in the context of disability studies, is the process of giving a person with a disability a more “normal” standing in society by removing stigma and including them in the life of the greater community. Contrasting with normalization is the concept of ableism. “Ableism is manifest whenever people assume that normal physical, mental, and emotional behavior is beneficial regardless of a person’s actual physical, mental, and emotional attributes” (Albrecht, p. 2). For individuals with disabilities, a concept of “normal” can actually be harmful. This is why it is more important to strive for respect and value given equally than it is to try and make everyone feel that they are normal or that normal is something to strive towards.
Communitization is the term for the process of community integration and the removal of barriers that keep people with disabilities from being actively involved in the greater community (Hogan). People with disabilities are often kept away from the community, reinforcing barriers in attitudes affirming they are mysterious, foreign to normal society, and even deviant. Active inclusion in the greater community breaks down these presuppositions and boosts the self-esteem of the individuals who had before felt isolated and tucked out of sight.
This leads to what should be the response of society, Social Role Valorization. Social Role Valorization (SRV) is the name given a concept for transacting human relationships and human service, formulated in 1983 by Wolf Wolfensberger (Osburn). SRV offers a structure for adding value to a person. Individuals with disabilities have experienced many wounds, like the 18 outlined by Wolfensberger. Also according to him, the more socially devalued qualities a person has, the more wounds they are likely to have experienced (Wolfensberger). SRV is about establishing social value among individuals with disabilities by changing expectations and perceptions, making devalued qualities less so thus decreasing their wounding power (Wolfensberger).
SRV provides a person with disabilities the opportunity to develop a more meaningful and valued role in society. This changes the perceptions of society, and especially the people who are interacting with the person. More importantly, it changes individuals’ views of themselves. Their identity is expanded, and their roles in society are valued—and hopefully even celebrated.
The key premise of SRV is that people’s welfare depends extensively on the social roles they occupy. People who fill roles that are positively valued by others will generally be afforded by the latter the good things of life, but people who fill roles that are devalued by others will typically get badly treated by them (Wolfensberger, p. 105).
Osburn explained the importance of SRV for both people who are currently in devalued social roles as well as those who are at the highest risk of entering a devalued role. “It can help not only to prevent bad things from happening to socially vulnerable or devalued people, but can also increase the likelihood that they will experience the good things in life” (p. 5).
The truth is that everyone is at risk of entering a devalued role as long as having a disability status equates to a devalued role. Some people may have greater risk factors, but as humans, we are all susceptible to accidents, illness, genetic predispositions, and many other things that lead to an impairment and disability.
SRV strives to enhance competency or imagery (Wolfensberger). Competency focuses on the individual, providing education and training and access to valued social roles. Giving individuals opportunities to volunteer their time or pursue jobs that reflect a higher social value is one way to do this. Imagery focuses on how to make society aware of the value of existing roles filled by individuals with disabilities. Wolfensberger speaks to the importance of developing social images that cast a positive light on people with disabilities through advertising and media (p. 112). Including individuals with disabilities in positive marketing is one practical way to begin painting a new social image.
So, what is disability? Since disability is society’s answer to impairments, the answer is up to us. This is an incredibly empowering thought—empowering and scary at the same time. Knowledge carries a lot of responsibility. Disability is not just a set of impairments; it is a construction. Let’s get to the work of de-constructing it!
Albrecht, G. (2006). Encyclopedia of Disability Volume 1. Thousand Oaks, CA: Sage Publications.
Allen, J. (2010). Overcoming Stigma. Retrieved from http://saynotostigma.com/2010/01/overcoming-stigma/
Armer, B. (2007). “Eugenetics: A Polemical View of Social Policy in the Genetic Age.” New Formations, Spring. Retrieved from http://www.leeds.ac.uk/disability-studies/archiveuk/armer/Eugenetics.pdf
Devlin, R. & Pothier, D. (2006). “Introduction: Toward a Critical Theory of Dis-citizenship.” In Devlin & Pothier (eds.). Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law. Vancouver, BC: UCB Press. Retrieved from http://www.ubcpress.ca/books/pdf/chapters/pothier.pdf
Goffman, E. (1963). Stigma Notes on the Management of Spoiled Identity. London, UK: Penguin.
Hogan. M., (1980). “Normalization and Communitization Implementation of a Regional, Community-Integrated Service System.” In Flynn, R. J., & Nitsch, K. E. (eds.), Normalization, Social Integration, and Community Services. Baltimore, MD: University Park Press.
McNair, J and McNair, K. (n.d.). Effectively Reaching Out to People with Disabilities by Understanding the Wounds Caused by Society. Retrieved from http://ccsw2012.weebly.com/uploads/1/1/5/4/11542142/wolfensberger_woundings.pdf.
Mercer (Eds.), Exploring the Divide. Leeds, UK: The Disability Press.
Oliver, M. (1990). The Politics of Disablement. London, UK: Macmillan Education.
Osburn, J. (2006). “Overview of Social Role Valorization Theory.” Retrieved from http://www.srvip.org/overview_SRV_Osburn.pdf
Pfeiffer (2002), “The Philosophical Foundations of Disability Studies.” Disability Studies Quarterly 22(2). 3-23. Retrieved from http://dsq-sds.org/article/view/341/429
Shakespeare, T. (1996). “Disability, Identity and Difference.” In C. Barnes & G. Merecer (eds.), Leeds: The Disability Press.
Wendell, S. (1996). The Rejected Body: Feminist Philosophical Reflections on Disability. NY, NY: Routledge, p.44.
Wolfensberger, W. (1998). A Brief Introduction to Social Role Valorization: A High-Order Concept for Addressing the Plight of Societally Devalued People and for Structuring Human Services (3rd ed.). Syracuse, NY: Training Institute for Human Service Planning, Leadership & Change Agentry (Syracuse University).
Katie E. Venzke
Katie E. Venzke is Senior Client Services Administrator at CTB Financial Services, Ltd. in Minneapolis. She is currently pursuing a Master's degree in disability studies through California Baptist University. Her passion is to see individuals with intellectual disabilities empowered to achieve their own dreams.View Full Bio