In Shakespeare’s Romeo & Juliet, Juliet famously asks, “What’s in a name? That which we call a rose by any other name would smell as sweet.” She wonders how the name someone has can define them, rather than the characteristics of the person himself. This seems logical enough, a name is just shorthand for describing an actual object or state of being, but when it comes to disability, a name can take on significant meaning.
I recently attended a panel discussion hosted by the Museum, Arts and Culture Access Consortium (MAC), a group whose mission is to promote access and inclusion at cultural institutions in the NY metro area. I have been to a handful of their workshops and always learn something. This session focused on language and disability, and the importance of getting the words right in order to reduce stigma and promote conversation about disability. A very complex issue.
I share my take-aways from the meeting below. Please share your thoughts in the comments.
The language of disability is constantly evolving.
Historically, disability was discussed within a medical model. Doctors discussed people’s inability to do something that a “normal” body could do — whether that was walk, hear, see, or whatever. It was a “dis” ability, “dis” meaning apart or asunder in Latin. Sometimes derogatory words like “crippled” or “retarded” were used, perhaps from a lack of understanding. People with hearing loss may have been called “deaf and dumb,” especially if they had trouble with speech. The term “hearing impaired” also reflects a medical model mentality.
The medical model transitioned into person first language as in “a person with a disability” or “a person with hearing loss,” stressing that the person comes first and the disability second. This is the type of language I typically use when I talk or write about myself. This wording is often used in public documents, on websites, and by hearing loss organizations because it is respectful, but it can be wordy and cumbersome to use.
Recently, identity first language has become popular, for example, “I am disabled.” This assumes that the person part is a given and implies membership in a community of others with that same disability. Many of the panelists at the workshop felt empowered when using this type of language.
For hearing loss, identity first language is complicated by the Deaf community, which has defined Deafness culturally to include using sign language to communicate. For “deaf” people who don’t sign or who aren’t culturally deaf, the word doesn’t seem to fit, leaving us without a one word descriptor that accurately reflects our state of being.
Evolution in language makes it challenging to know what to say sometimes. One audience member commented, “It used to be okay to say visually handicapped, then visually impaired, then partially sighted. I don’t know what is right anymore.” Language often reflects society and culture, meaning change is likely the only constant.
What you call yourself may change as your feelings shift.
Many panelists noted how their own use of language changed over time as they become more accepting of their disability. Often their path took them through the medical model, to person first and finally into identity first, as they discovered a community of others like them. Seeing all the wonderful things that people with similar challenges to you have accomplished can be inspiring and jumpstart confidence in your own abilities.
This is definitely true for me. Before I came out of my hearing loss closet, I referred to hearing loss only when absolutely necessary, saying something like “I don’t hear well.” Now I typically say “I have a hearing loss,” or “I wear hearing aids.” Occasionally, if I want to have more impact, I will say “I’m a little bit deaf.” That really gets people’s attention, perhaps because deafness is seen as more serious. Because of the cultural associations of using the word deaf (Deaf), I find it difficult to use the term regularly — primarily because I don’t want to give a false impression that I use sign language.
There probably is no one size fits all solution for all disability groups and for all individuals within each group. Language is personal, and reflective of our own experiences and feelings about our disability.
Having proper language to use reduces stigma and fear.
Without the proper vocabulary, people are often reticent to discuss disability because they feel uncomfortable or nervous about offending someone. This makes disability a stigmatized unmentionable. When people know the right words to use, it makes it easier to have a conversation about disability. This makes it simpler to create work-arounds when needed and to provide a more inclusive environment.
Sometimes tone is more important than the words that are used. Many panelists felt that being treated with respect was the most important thing, regardless of what language people used. All wanted to avoid being deified as well. One panelist commented, “I am not a saint or a super human, I am just living my life. But don’t ignore my disability either. That is just not reality.”
Readers, what language do you use to discuss your hearing loss?
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