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So Who’s Disabled?

Over the weekend, I came across an article in the Adventures in Modern Life blog by Ben Mattlin, a contributing editor at Institutional Investor.  In it, he posts a letter from the mother of a 26-year-old woman with disabilities, expressing her offense at people who use inappropriate terms like “retarded” to describe people with disabilities.   Here are a couple of excerpts from the mother’s letter:

I’m privately offended by the widespread casual use of the word “retarded” as a synonym for “stupid.” I hear this from people with physical disabilities as well as the able-bodied. I also wince a little whenever I hear a person with physical disabilities ranting about how people are confusing him/her with a person with cognitive disabilities just because he/she is in a wheelchair….

Going even further, it’s my observation that some people with physical disabilities are prejudiced against OTHER people with physical disabilities. For example, some of my friends in wheelchairs won’t consider romantic involvement with another person in a wheelchair. They see the other person’s disability as an impediment, because they want their partner to be able-bodied.

What opened my eyes was Mattlin’s comment to his own post:

One disability group that historically distanced itself from the rest of us is the deaf community. After all, they even have their own language! I used to wonder why my phone bill has a tax for the “deaf and disabled.” Isn’t that redundant? I thought.

I am deaf and have always considered myself disabled.  I even write a blog that covers disability issues.  I know many friends who are deaf who consider themselves part of the disabled spectrum, and also know some deaf people who do not consider themselves disabled.  In a sense, deafness is an “invisible” disability, but it is a disability nevertheless.

Now, when I consider myself disabled, I do not think of myself as not being able to function. I just view myself as not being able to use a part of my body that ordinarily would be used for many life activities.  Initially, I was tempted to respond to Mattlin’s comment by disputing his perception that the deaf community is trying to be separate from the rest of the disabled community. But after I spoke to my wife, and did some research on the web, I realized that this issue is already an open can of worms, and I cannot deny that there is a history behind Mattlin’s comment.

In Jamie Berke’s blog About.com: Deafness, she posts this very question of how deaf people view themselves. Her title words were: “Deaf Culture – Deaf? Disabled? Both?” Apparently these questions elicited powerful responses within the deaf community, as people took every conceivable position to defend or dispute the contention that being deaf is being disabled.

I am not going to go into every detail brought up in Berke’s posts on this issue, because there are so many strands. However, I take serious exception to the attitude prevalent among some people within the disabilities community — and in the technical term, I mean those who do not have effective use of a major physical, mental, or cognitive ability — to try to consider themselves “not part” of the community. Those who do not know any other people with disabilities, and/or who are comfortable with their place in the world, are still considered part of the disabled community — even if they do not have to take an active, physical part in this community. If they actively disown the disabilities community, perhaps out of a sense of self-consciousness, or a desire to prove themselves in the world, they are entitled to their own opinions.  But they need to be sensitive to how this is perceived by others in this community, especially if they communicate their own feelings publicly.

For deaf people themselves, the fact that the disability is not physically obvious may lead some of them to not consider themselves disabled. This might stick in the craw of some people within the disabled community, considering that the population of people who are deaf or hard-of-hearing is very substantial and they have clout in politics and advocacy. I get Mattlin’s point — that the term “deaf and disabled” is redundant. I literally never thought about this contradiction until he pointed it out. Apparently, a Google search of the term “deaf and disabled” resulted in a surprisingly high number of instances of this term, both in formal names and in popular usage. Deaf and Disabled Telecommunications Program. Dogs for Deaf and Disabled Americans.  On Idealist.org: “Working with deaf and disabled people.”

For a long time, I did not want to call myself deaf, and thus, disabled.  I preferred the term “hearing-impaired.” I thought it sounded less loaded and more professional, especially in the business world. I felt a bit strange coming into a business meeting or job interview, and calling myself “deaf.” It was not out of any self-consciousness, or a desire to distance myself from the deaf community. At that time, I was aware that within the deaf community, the word “deaf” has so many loaded connotations. Whereas I technically considered “deaf” to simply mean someone with a hearing loss, other people used the word “deaf” to connote cultural identification (often using capital “D” instead of “d” — in other words, “Deaf”). Even the sign for “deaf” describes both hearing loss and not using one’s voice, while the sign for “hearing” does not describe the ear at all, but the mouth. (Click on this video and see the signs for “hearing” and “deaf”, starting at 0:39.) I was particularly sensitive to these signs because I grew up working very hard to learn and perfect my speaking abilities even though I was born with very profound deafness (100 db in both ears). I did not want the world to think that the deaf community was all sign and no voice, considering the physical and mental investment I put into improving my speaking and listening abilities.

It was all with good intentions, but there was a problem with this approach. Every time I used the word “hearing impaired,” I consciously thought of my deafness. This body language was subtly apparent in my professional and social communications with hearing people, to the point that they viewed me first through a deaf lens and then through the “Michael” lens. If I wanted them to see me first as Michael, before defining me as anything else, I needed to change how I communicated myself. I found that if I called myself “deaf,” instead of “hearing-impaired,” it was easier and less complicated to say, and enabled me to focus on the topic at hand instead of stumbling over longer words. Moreover, trying to use the word “hearing-impaired” in the common spoken English vernacular was very awkward, and some deaf people I spoke to did not take this in a positive way because they felt I was slighting deaf culture and distancing myself from the deaf community, or even the disabilities community as a whole.  No longer self-conscious, I do not care what people think of the term “deaf.” I say it, usually with gusto, and then go on to the topic at hand.

As a lifelong deaf person, I have a lot of admiration for the incredible diversity of deaf culture that has developed over many decades, along with the rich and varied history of American Sign Language and its international equivalents (British Sign Language, Indian Sign Language, etc.), and the oral and auditory-verbal traditions that also developed at the same time through the A.G. Bell Association and other related associations.  I wish there were more politically correct signs for “deaf” and “hearing,” but these signs are so deeply ingrained in communicative usage that I use them often without thinking about what they mean.  I have many close friends in both the ASL and oral/auditory-verbal camps, and usually many of them are in both camps.

So yes, I’m disabled. What’s wrong with that?

(Disclosure: I am an active member of the A.G. Bell Association.)

5 comments… add one
  • 5kidswdisabilities January 11, 2010, 8:21 pm

    Nice information.
    Lindsey Petersen
    http://5kidswdisabilities.wordpress.com

  • Dianrez January 11, 2010, 8:46 pm

    What was not mentioned in this article is that the deaf who do not consider themselves disabled are most often those who are part of a well-evolved society, or culture if you prefer. In this society sign is the language most used, and the dynamics as normal as in any hearing society.

    The AGBell Association mostly represents those who are not members of this society. It also represents a mindset that is most closely aligned with the norms of the hearing community and the concept of “disability”.

  • Ben Mattlin January 11, 2010, 9:01 pm

    Well done, Michael. And if you’re now cool with identifying yourself as part of the vast, multifaceted community of people with disabilities, then all I can say is … welcome!

    It is a shame when “disabled” gets a bad name, isn’t it? But for the time being at least, it’s the term for me anyway. Well, that and “crip”… Ha!

  • Karen Putz January 12, 2010, 12:06 pm

    You know what I love most about this post:

    “No longer self-conscious, I do not care what people think of the term “deaf.” I say it, usually with gusto, and then go on to the topic at hand.”

    That’s pretty much my own journey back in college– learning to let go of “impaired” and embrace the deaf me. Quite freeing.

    I am looking forward to the AGBell, ALDA, HLAA, NAD and World Expo conferences this summer and I’ve marched in disability events. The way I see it, my world opens up more when I embrace the diversity rather than trying to define or limit it.

  • Anne Feldman January 12, 2010, 9:57 pm

    A wonderful exposition of very complex topic. I learned a lot

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