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Friday, September 1, 2017

When A Hyphen Matters: Reflections on Disability and Language

When A Hyphen Matters: Reflections on Disability and Language
Megan A. Conway, Ph.D.
RDS Editor-In-Chief

A colleague recently sent out an email titled, “Respect for My Community” in which he chastised a local service organization for distributing t-shirts that he believes misspelled the word “Deaf-Blind” (with hyphen) as “DeafBlind” (without hyphen). “Would YOU accept a T-shirt that said ‘dEAF’ [with improper capitalization]  or ‘Ward of Hearing’ [with spelling errors]?” he wrote, “Would YOU be proud to wear a T-shirt showing the public the WRONG spelling of YOUR community?” His point is well taken. He is proud of his identity as a Deaf-Blind person. He fought long and hard for recognition of language that would describe his unique disability in a way that also reflects his identity. For many Deaf-Blind people,  the hyphen is important because it signifies that “Deaf-Blind” is its own unique identity that is different from that of Deaf or Blind people. The capitalization of “D” and “B” are also important, because they signify cultural identity just as a capital “D” signifies Deaf cultural identity (as opposed to a lower case “d” which is understood to represent medical aspects of deafness).

Here is the difficulty though - one person’s identity as a hyphenated Deaf-Blind person does not reflect everyone’s identity. I personally am a deafblind (no hyphen) kind of gal. Some of this preference is aesthetic. I just like the way “deafblind” feels. It feels like one, clean, smooth word. For me, the hyphen medicalizes the word. And I am not alone. Outside of the United States, the term “deafblind”  has long been preferred, and it is catching on in the U.S. DeafBlind Citizens in Action (of which I am proud to be a member of the Board of Directors) uses the term “deafblind” (without a hyphen) to describe its membership. Even the American Association of the DeafBlind, once the champion of “Deaf-Blind” (with a hyphen), seems to have recently dropped it. According to one DeafBlind person, when asked about whether or not a hyphen is preferred:

"It is definitely DeafBlind... one word, capital D and capital B and NO hyphen.  It is true that it's always been hyphenated in the past.  When the word DeafBlind is hyphenated, it usually indicates that it is a problem and that it needs a solution.  As you know, DeafBlind people don't have problems that need solutions.... we have a language and culture!  What we need and deserve is a community of people who will learn and respect our ways.”

I personally do not identify with use of the capitol “D” and “B” because I have never quite seen myself as a part of a “culture” related to Deafness, Blindness, or DeafBlindness. This is mostly etiological - Although I am “legally” deafblind I do have some vision and hearing and use speech to communicate. I consider myself to have some degree of membership in all of these communities, they are my people. But for me personally, capitalization does not matter.

This conversation about hyphens and capitalizations will, if it has not done so already, eventually put you into a deep coma. Who cares? Why are we arguing about grammar when there is so much good work that needs to be done to support Deaf-Blind/deafblind/DeafBlind/D/deaf and B/blind people in the community? Well, the answer is that it does matter and it does not matter. We do need to recognize that a hyphen can matter. And then we do need to move on.

Language matters because language has the power to shape societal perceptions, and language also reflects societal perceptions. Those who used to be called “crippled”, “imbeciles”, “deaf and dumb”, and “retards” know how such language impacted how other people treated them and how they perceived themselves. “The Handicapped” fought long and hard for the word “disabled” because it feels more respectful and because “disabled” has become a signifier of identity and community membership that was claimed by disabled people themselves. But there is nothing to say that “disabled” will be a preferred term forever, nor that it is the preferred term for everyone who might be identified as such by others. Some people do not like the word “disabled” because they feel that it does not describe them. Similarly, at one time some members of the Deaf-Blind community decided that “Deaf-Blind” best described that community. But others then, and others now, do not agree.

Now for the moving on. The issue of language always comes up in my Disability Studies courses because students want to use language respectfully, but they sometimes just don’t know how. “Is it o.k. to say ‘handicapped’? What about ‘handicapable’? Anything is o.k. so long as I put the person first, right?” To this later question I want to say, “Oh yeah, sure, if you call me a ‘person who is an imbecile’ that will be just fine” (but I don’t, because I am the wise professor). What I DO tell my students, and what I say to you is, “Respect the person by respecting how they identify themselves.” If you see yourself as Deaf-Blind, and it matters to you that I use a hyphen when I refer to you as Deaf-Blind, I will call you Deaf-Blind.

That’s all very nice miss Pollyanna, but what do we do when we need to reach a consensus about the name of our organization,  or how our disability is cited in the law, or how other people should refer to our community? In my opinion we do our best to ensure that the language that we use reflects the preferences of a majority of our community, the rest of us grin and bear it, and we move on to helping each other make our lives better.

Though it is too bad we can’t all be like my grandfather who always said, “You can call me anything you want - just don’t call me late for dinner.”