Diabled
by Olivia M. Myers
We live in a diverse world in which technology and globalization allow people to pay increasing attention to human rights around the world. People have greater access than ever before to firsthand knowledge of the experiences of marginalized populations. This article focuses on some of the experiences of the disabled community. In particular, I will discuss language and the importance of using community-chosen terminology as a means of respecting the identities and autonomy of disabled clients and other disabled individuals.
Contemporary Language Use Around Disability
Among professionals and institutions that provide care, there is some debate over what types of language are most appropriate when referring to the phenomenon of disability or people with disabilities. Some use straightforward terminology, such as “people with disabilities,” “disabled individuals,” and “disabled populations.” Others have drifted to what they consider more sensitive or politically correct language, by using phrases such as “special needs,” “differently abled,” “people of all abilities,” “handi-capable,” and others. The National Association of Social Workers (NASW) recently changed all appearances of the word “disability” to “ability” in the NASW Code of Ethics. For example, the phrase “mental or physical disability” was changed to “mental or physical ability” in the section titled “Social and Political Action”:
Social workers should act to prevent and eliminate domination of, exploitation of, and discrimination against any person, group, or class on the basis of race, ethnicity, national origin, color, sex, sexual orientation, gender identity or expression, age, marital status, political belief, religion, immigration status, or mental or physical ability. (National Association of Social Workers, 2018, Ethical standards, sec. 6.04)
These changes were made as part of a larger set of updates and revisions to the Code of Ethics, which took effect on January 1, 2018. The changes apply only to specific instances within the Code, and not to general usage of these terms.
Reflections on Contemporary Language Use
The urge to substitute the terms disabled and disability with other phrases is understandable. Disability, because of the prefix dis-, is often seen as an inherently negative word that connotes a deficit or weakness, as well as a sense of brokenness. No one wants to be defined by what she, he, or they cannot do. This is equally true for those both with and without disabilities. That social workers and social work organizations are attempting to approach the topic from a more strengths-based approach is laudable.
The problem arises when one stops to consider who is doing the defining. Is it disabled people who define themselves by impairments, or is it the rest of society? Of course, it is largely those members of society who do not experience disability who hold the power to define it (Dolmage, 2005).
The disabled community has—with only a few exceptions—chosen the terms disability and disabled to describe and identify themselves. It is not the concern of non-disabled individuals whether or not they value those terms or find them palatable. In keeping with narrative theory, self-determination, and the social work value of client empowerment, we must respect and use the terms that people choose for themselves. It is my belief that to avoid or eliminate the term disability in our language does much more harm than good for the disabled community. As a person living with an invisible disability, I find this deeply troubling.
Steering clear of disability contributes to the erasure of disabled individuals and their lived experiences. For many, their disabilities have a great impact on their daily experiences and decisions in both positive and negative ways. I will reemphasize that no person wants to be defined by limitations or challenges. However, the elimination of the word disability makes the opposite error by ignoring those challenges—especially discrimination and oppression—entirely. In addition, when social workers avoid using the terms disabled and disability, we contribute to the erosion of a sense of identity and pride within the disabled community. Disabled and even more politically volatile terms such as crip are increasingly used to build personal identity, community networks, and community pride (McRuer, 2006; Clare, 2009).
Furthermore, to substitute the words disability and disabled with more “respectable” and sanitized terms such as “ability,” “varying abilities,” or “differing abilities” is to actually perpetuate the stigma of disability by euphemizing the terms disability and disabled. By tiptoeing around those words and refusing to say them, we magnify the perspective that disability is a negative phenomenon and is marked by deficit, weakness, and brokenness.
Lawrence Carter-Long, a disabled activist and artist, launched a social media campaign called #SayTheWord in 2016 (King, 2016). In this campaign, Carter-Long encourages people to stop glossing over the experiences of disabled individuals or avoiding the topic altogether out of discomfort. He implores us all to just “say the word” disabled, so we can foster deeper cultural and political dialogue.
Shifting Cultural Paradigms
It is important to consider the sociocultural context of this linguistic debate. In Western society, the current dominant model for conceiving of disability is the medical model, in which disabilities are “diagnosed” and “treated,” just as one would diagnose and treat a physical condition such as hypertension. Dolmage (2005) refers to this medical model as the “medical-scientific paradigm,” through which contemporary Western society views disability. It is important to recognize that terms such as disabled and disability have been used pervasively by medical professionals in ways that have stigmatized and degraded the disabled community. However, the disability community has chosen to grasp onto, reclaim, and embrace these words.
Since the passage of the Americans with Disabilities Act (ADA) in 1990 and its amendment in 2008, we have seen the beginnings of a major cultural shift from a “medical-scientific paradigm” (Dolmage, 2005) of disability to an identity-based paradigm (King, 2016). Members of the disabled community have increasingly perceived their disabled status less as a problem and more as an identity. Carter-Long (as cited by King, 2016) writes:
Those who grew up under the ADA didn’t feel shame.... Disability was no longer an individual burden as so many of us were led to believe but rather a diverse and vibrant community with a history, and a legacy, all our own. That changes everything.
The reclamation of the words disabled and disability from the dominant medical model has been an important part of this paradigm shift. In referring to this reclamation of language, Mairs (as cited by Dolmage, 2005, “Our murmuring bodies”) writes that disabled people can “find their ‘incarnation in a sociolinguistic system over which they have had relatively little power.’” In other words, disabled individuals can overturn dehumanizing medical prose and transform it into a means of cultivating personal identity and connection to community.
Health concerns are certainly a reality for many disabled individuals. However, there are many cases in which an identity-based model of disability is more appropriate and empowering than a medical model. For example, Down syndrome is a natural variation in the human genome. It commonly co-occurs with certain health concerns, such as heart disease or hypothyroidism. In such cases, it is more appropriate to address those concerns on their own terms, rather than attempting to “treat” someone’s Down syndrome. For many, the diagnosis that delineates their disability (such as cerebral palsy or blindness) is often less of a limitation than frequently co-occurring factors, such as chronic pain, inaccessible spaces and technology, and social stigma.
Moving Forward
Reclaiming language and symbols that have historically been used to denigrate members of a marginalized population can be a powerful way to build one’s sense of identity, connect with others in the community, and proclaim to the rest of society that one is “out and proud.” Sherry (2013) reminds us that it is important to take note of who adopts usage of a reclaimed word or symbol, as well as how they use it, as a barometer of the word’s acceptance by those most affected by it.
All social workers should use the names, pronouns, and words that clients and community members have themselves chosen to be identified by. In the shift from a medical paradigm to an identity-based paradigm of conceptualizing disability, the terms disability and disabled have become virtually universally accepted by disabled individuals to describe themselves. In fact, there is a growing push coming from some within the disabled community to use “identity-first” language rather than “people-first” language in some contexts. A growing number of disabled individuals would prefer to say, “I am deaf” rather than “I have a hearing impairment,” or, “I am a wheelchair user” rather than “I am a person who uses a wheelchair.” This avoids disconnecting one’s disability from one’s identity. “What is so bad about being disabled? It is an important part of who I am,” goes the line of thinking.
Not all people have disabilities, as if they were sicknesses. Many people are disabled. The disabled community has worked hard to protect and reclaim this language from society’s dominant medical model; to wrest that label from them is disempowering and imposes non-disabled ways of thinking and speaking. Instead of fearing the word disability, it is crucial to cultivate the growth of a new generation of social work practitioners and leaders who believe that disabled is a viable identity that can be embraced.
References
Clare, E. (2009, October 15). Thinking about the word crip [Online blog post]. Retrieved from http://eliclare.com/poems/thinking-about-the-word-crip?/trackbacki
Dolmage, J. (2005). Between the valley and the field: Metaphor and disability. Prose Studies, 27(1-2), 108-119. doi: 10.1080/01440350500068973
King, B. J. (2016, February 25). ‘Disabled’: Just #SayTheWord. [Online article] NPR, Sec. 13.7(Cosmos & Culture). Retrieved from http://www.npr.org/sections/13.7/2016/02/25/468073722/disabled-just-saytheword
McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York, NY: New York University Press.
National Association of Social Workers. (2018). Code of ethics. Retrieved from https://www.socialworkers.org/About/Ethics/Code-of-Ethics/Code-of-Ethics-English
Sherry, M. (2013, November 23). Crip politics? Just...no [Online opinion piece]. Retrieved from http://www.thefeministwire.com/2013/11/crip-politics-just-no/
Olivia Myers is an MSW student at Loyola University Chicago, where she plans to concentrate in mental health and obtain a Certificate of Advanced Study in Philanthropy. She hopes to work extensively with disabled and LGBTQIA2+ communities.