Braille Monitor                                             April 2015

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The Deaf-blind Dilemma

by Cathy Guillory Miller

Cathy Guillory MillerFrom the Editor: In the October 2014 issue we ran an article of particular interest to people who are deaf blind about the service iCanConnect. In trying to edit that article, I found that there was much I did not know about the deaf blind. I consulted with Joe Naulty, and he recommended that I speak with Cathy Guillory Miller. I wanted to understand more about the conventions regarding the words deaf blind and the reason or reasons why the words were written differently. Sometimes they were written as two separate words, sometimes they were hyphenated, and sometimes they were written in upper case, lower case, or a mixture. Was it simply a matter of preference, style, or was there something more important for me to know as I edited the article? The letter Cathy wrote to me explained so much that I asked her permission to run it as an article in the Braille Monitor. She gave her permission, and I offer this with the hope that it will be as helpful to our readers as it has been to me. As you read it, I think certain parallels will become obvious. Here is what she says:

In the community we have a very rich history, including two distinct cultures which have been so severely separated from one another by their language that there doesn't seem to be any evidence they were even aware of one another's existence until sometime after the rise of the information age.

First there is the Deaf-blind, with a capital D. These are folks from the Deaf culture who, for one reason or another, have become blind. They may have been born into deaf families and later experienced the loss of vision. People who self-identify as Deaf with a capital D consider themselves part of a relatively isolated nondisabled community. They are isolated by their language from the community at large. They often are able to communicate with members of the hearing community through various adaptive means but choose to maintain close association among themselves.

Part of the reason for their choice to isolate themselves lies in the history of Deaf people in this country. At one time educators believed that using hand signs was a lower form of communication--not fit for humans. Hearing teachers at residential schools for the Deaf forced Deaf children to read lips and to practice using their voices. Deaf students spent long, weary hours working with speech therapists and were forbidden from using their language of choice. Because of this oppression, which continued for years, American Sign Language (ASL) was nearly extinguished. A whole generation of Deaf students kept the language alive by sneaking signs with each other at night in their dormitory rooms.

If a student had any amount of residual hearing, he or she was forced to wear hearing aids. Hearing aid technology was not very evolved during this time; the devices were not very useful, plus they were highly uncomfortable. It was a tradition among Deaf children upon completing school to throw away their hearing aids in celebration of their new freedom.

Because of all the oppression by the hearing educators, this generation of Deaf people learned to distrust the hearing community. That distrust continues today and is perpetuated by incidents such as the failure of institutions such as hospitals and the judicial system to hire qualified interpreters when serving a Deaf person, resulting in horror stories about wrongful incarceration, withheld medical treatment, etc. A common cruelty involves police officers restraining the wrists of a Deaf person, who then is unable to use his or her hands to communicate with an interpreter if one is present.

Such distrust and animosity between the Deaf and hearing cultures extends to blind folks who, for various reasons, have lost their hearing. This group of deaf-blind people [deaf-blind being hyphenated but in lower case] do not naturally self-identify as deaf-blind. They have likely started to come to terms with their blindness through association with groups such as the NFB. The tragedy here is that, in the past, the true model of the independent vanilla blind did not include anyone who had "something else wrong with them." If one had a hearing loss, one might as well remain in an institution or on the street corner holding out a hat. The "hearing" deaf-blind person was not likely to speak out and self-advocate. The deaf-blind from the hearing culture were not seen any differently from the hearing population in general in the eyes of the Deaf and Deaf-blind from the Deaf culture.

Furthermore, since the deaf-blind with a lower-case D did not learn to use ASL, communication between the two deaf-blind cultures was, for all intents and purposes, impossible. In rare circumstances, where the two groups were placed together, the result was extremely uncomfortable. Each group ignored the other. The act of ignoring was interpreted by the other group as snobbery.

I am a deaf-blind person who is from the hearing culture. My hearing loss was so severe that I made the choice to study at a total immersion facility for several months in order to learn sign language. All my teachers were Deaf. Upon completing my course of study, I had regained the ability to communicate; yet I could still not communicate with anyone I had known before I began my study. Hence I would need to choose the culture to which I would belong. Should I say good-bye to all my friends and family? They were not about to learn to sign.

I was very fortunate that, within two or three years of learning ASL, I was given the opportunity to qualify for cochlear implants. They were both successful, and I have my life back as a blind person. But most others are not so fortunate.

So now we have two different groups of DB [deaf blind] folks who can't communicate with each other. They have the same disability. Both have a combined vision and hearing loss, both can benefit from an SSP [Support Service Provider], and both can benefit from Braille. There are some DB folks who cross over the culture line. We see them at our DB Seminar during our NFB Convention. We cannot ignore them. They cannot ignore us. They need the NFB philosophy. We need them behind us and with us when we go to Capitol Hill someday to ask for a national SSP Program. When I go to one of their meetings, because they know me as one of their supporters, they provide me with a voice interpreter. The NFB has begun providing interpreters for DB attendees who use ASL. The DB Division is agonizing over the cost of ASL interpreters.

But relationships between these two groups are very difficult to forge. These relationships must be developed over time, with patience enough to allow the formulation of trust. As Pam Allen has said to me regarding the differences that set us apart, the key is education. We will not overcome the damage that history has done unless we first understand what will be required to heal the wounds.

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