Circa 2008
The topic of—and often battle over—“correct” disability terminology has led to heated conversation as long as we have allowed language to describe us. We intuitively compare what is right vs. what is wrong. What is prideful vs. what is demoralizing. All of these inquiries are valid, yet in our quest to identify appropriate titles for our community and for ourselves as individuals, have we perhaps gotten stuck in the quagmire of jargon?
The list of options presented above comes from firsthand responses given to a question posed in an “investigation.” (More about this in a moment.) Two details about this particular list are important: 1) These replies were given within the last six months; and 2) All of the people who responded refer to themselves as disability activists or advocates. Surprised?
If your response was the same as any one of these advocates, regardless of which option you chose from the list, it’s safe to assume that you, as a person with a disability, still want equal education. You are still looking for equal employment opportunities. And you still want health insurance that doesn’t penalize you because you were born with CP, had a brain tumor removed as a teenager or select holistic medicine rather than the chemicals your doctor prescribes.
The question then becomes: Is any one of us, as an individual, in a position to define “right and wrong” when it comes to referring to a disability, since a range of language is used within our community? Might the variance in terminology itself be a form of diversity that should be respected, especially when people use these terms to describe themselves? Bottom line: Is terminology really our priority? And if it is, should it be? As the disability community, what are we really looking for, and to what should we give priority, equal rights or universal terminology?
I recently participated on a team of people invited to review and select essays for a national publication. The essays were specifically about young people with disabilities. Submissions came from parents, community members, medical professionals, siblings and friends. A few were from people with disabilities themselves, but most articles came from people without disabilities, who were serving as an “ally.” Although each essay was written in a spirit of goodwill and no writer intended to speak in a derogatory manner, I was taken aback by how negatively the various writers described young people with disabilities.
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Parents wrote of how they were “embarrassed” because their child was born with autism, or without arms or with mental retardation. They described weeping for days, praying and wishing that they could make their child “normal.” I read how medical professionals felt pity for families who had children with “defects” and “abnormalities” that would “impair them for life.” Teachers described being so proud of their “special students” simply because they came to school that day— rather than noting the child’s legitimate academic accomplishments.
Out of respect, I told one of the book’s formal authors that I would have to write something about this review experience. On more than one occasion, I sat at my computer and watched as my frustration crept into the article I attempted to write. I’d hit a block after just a few short paragraphs. Ultimately, I filed away my notes, and decided to begin my own investigation. It entailed simply listening to people in the disability community describe themselves.
For the next six months, I asked people who define themselves as disability rights activists about disability terminology. The vocabulary list at the beginning of this article was the result of my listening activity. As you can see, noticeable diversity exists among us as disability activists. The list seemed long, and its content surprising. But in all reality, that list was nothing more than a glimpse of the range of terminology being used when including the disability community, as well as its friends, parents and allies.
The original list of terminology compiled while reading and scoring the publication submissions refer to people with disabilities using words ranging from “a crip” to “wheelchair restricted.”
These terms came from parents, community members, medical professionals, siblings, friends and even from people with disabilities. Although the majority of these terms are anything but complimentary, the writers noted that they are working towards some of the same goals as
those of us in the disability rights arena: empowering young people with disabilities. In spite of the negative language, the majority of these people still wrote about wanting equal rights, equal education, competitive employment and suitable health care. The majority, however, didn’t seem to think it was possible.
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In the movie The American President, one of the characters says: “Politics is perception.” Terminology, in my opinion, is not much different. If people perceive individuals with disabilities as being “burdensome,” “damaged,” “dumb” or “flawed,” then regardless of the writer’s claim of wanting equal education and career opportunities for all, in their reality they don’t perceive that is possible.
Let’s be honest. The disability community can be equally negative and exclusive. The responses in the first list all came from people striving to lead a march of social unity. But not a small number of them rolled their eyes at one another’s choice of vocabulary. One activist uses the term “special needs,” while another prefers the word “crip.” Some found the first phrase “too dated” or “derogatory to one’s self,” while others felt the latter descriptor was “too aggressive” or “discriminatory.” By the time we got to the part of the discussion with the terms “diseased” and “unintelligible,” “special needs” and “crip” seemed tame.
One possibility to unite these divides—the disability community itself as well as those who could serve as its allies—might be to intentionally embrace the challenge of looking past terminology. Admittedly, there are words in both lists that make me ill, and if I heard them spoken, I would be forced to ask if the user knew what was being implied. I would note offense taken and why, and I would provide alternative,“socially appropriate” language that might be used in its place. But I am also posing the challenge, myself included, to look at the bigger picture—getting past terminology to the point that we can focus on working together and achieving our movement’s larger goals: such as education, employment and healthcare. And in this process, allowing people to see for themselves just how wrong and offensive terms like “debilitated” and “invalid” really are.
Vocabulary won’t change overnight. But those in the disability community have countless opportunities to influence change in our daily lives. We need to look past internal separations that stem from the nametags we give ourselves, and focus instead on the bigger issues in our lives. Right now we are missing opportunities to come together because of first impressions formed, very often, by one-word phrases.
Liberalizing our view of terminology might also broaden our view of other self-identifying elements such as cultural beliefs, sexual orientation or economic background. And greater diversity on a range of fronts could, in turn, lead to increased awareness, understanding and respect which, ultimately, could lead to social change.
Admittedly, one of the simplest things in life is recognizing that something needs to be changed, and one of the most difficult things in life is actually changing it. In this particular case, we are challenged to explore the possibilities for improving disability rights by suggesting that unity be given greater priority than language. Our quest to improve social justice must take precedence over worrying what those of us working to improve it are called.
by Betsy Valnes
Betsy Valnes, a young woman with Traumatic Brain Injury and Anomia, is an active member of the Disability Movement in the U.S. and abroad. She currently serves as the executive director for the National Youth Leadership Nework.
