411: Two Sisters Battle to Keep their Hearing, Sight

About.com on Deafness has posted a link to an article written featured in the San Antionio Express News and it’s about two sisters in their 20s who are Deaf and diagnosed with Ushers. One has a cochlear implant, the other one doesn’t. Both were raised in mainstream schools and had their lives in verbal-oral environment.


Coco’s Commentary:

I was raised in a signing environment and in a Deaf boarding school. My parents could sign ASL pretty well, and was always encouraged to join in extracurricular activities with the Deaf. As I grew up Usher’s (diagnosed at 8) I was exposed to more Deaf than Deafblind, with lack of role models who were late-aged Ushers and successful. It took me several years to cope, adapt and heal from the diagnosis that I’d lose my sight.

I learned how to tactile with sign language in 2004 and I find it to be a blessing. I can tactile and understand almost completely sign language in my hands without seeing what’s in front of me. I am able to tactile with my parents, with my childhood mates, with Deaf adults, with hearing people who know how to sign, and even able to tactile with my best friend’s 2 Deaf children under the age of 7 who sign very fluently.

I’m just saying that if a Deaf Usher knows sign, learns how to tactile, the chances of communicating with people are even greater than those who are Deafblind with oral backgrounds and can only hear minimal to “good” sounds (often not crystal clear words/sounds) with a cochlear or with no hearing at all. I’ve seen Oral Deafblind struggle to communicate in Lorm/2 Hand Manual formats (see link    http://www.deafblind.com/lorm.html ) and it’s extremely long-winded to do, and seriously, how many Deaf/Hearing people know how to do Lorm and 2 Hand Manuals?

More and more people know sign language. It is POSSIBLE for a Deafblind person fluent with tactile to put their hands on a Japanese or French or South African or New Zealander (all with different sign language dialects) and UNDERSTAND mostly what they are talking about. TRUST ME ON THIS (I’d know … *smile*( Imagine an Oral DB person not knowing sign, or tactile, or even the Lorm, but basic voice/sounds? They would probably miss the coolness of tactiling sign language in 20 countries and understand most of it.

But most importantly, I noticed DB who were raised orally, so their parents abandoned the idea of learning sign language, then the child becomes an adult, more blind than ever, eyes deteoriating to the point where they can not read lips anymore? What if their cochlear doesn;t catch everything they try to hear?

My extended family doesn’t know how to sign. This pains me because it means I would “try” to communicate on a BraulleNote or a dual Deafblind Communicator ( http://www.humanware.com/en-usa/products/blindness/deafblind_communicator/_details/id_118/deafblind_communicator.html )with them, but the most likely scenario is me hiring an ASL interpreter. This would be better than the typing alternative, but it still hurts that I am not able to communicate fully with my family. My dad, mother, brother and aunt know sign but the rest don’t. It could hurt so much more if my parents didn’t sign – how would I find calm in having to hire an interpreter to talk to my parents over serious situations?

I thank Buddha everyday my parents sign. My dad doesn’t sign that great but it’s manageable for my hands.

I sincerely hope these girls find what they’re looking for and it makes their lives more independent. And the end of their battle will be when they accept the inevitable, find ways to cope, communicate, and live their lives. Once they turn it from a battle to survival, they will feel a mountain lift off their shoulders. May their parents come to the realization what the best communication method is – even if it means abandoning their decades-old theory that oralism works.

Just my two cents, and you’re welcome to tactile it or debate it.

I feel very strongly about Deafblind children growing up orally, it makes their adult lives so much more difficult than it has to be. Being Deaf first, blind second, I pride in my culture, its varied sign languages that goes global and the support that the Deaf/DB communities give. I’m blessed.

Good night from Phnom Penh, Cambodia.

Tactile love.


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2 Responses to 411: Two Sisters Battle to Keep their Hearing, Sight

  1. Sue says:

    I agree with the above comment. I have a son with Ushers. Why limit your child’s options? Give them all the tools available ESPECIALLY if your child has Ushers. My 16 year old son knows ASL, he also goes to the deaf school in our state. He knows he has the option of getting the implant, if he choses to do so. Right now, he is not eligible for the implant. But he has all these tools available to him, he is informed about his choices. He even has had some exposure to braille and orientation and mobility training, should he ever need it.

    I think the whole philosophy of oralism can hurt more than it can help ppl sometimes. Oralism is so limiting for a deaf/hoh person in terms of opportunities and life choices. So many parents do not realize this.

    Not to mention the isolation of deaf/hoh people who have never been exposed to the deaf community. Being exposed to deaf/hoh community opens more doors for the deaf/hoh person. . .

    I am deaf myself by the way (with an oral background) who has found the deaf community and sign language.

  2. Jean Boutcher says:

    Dearest Cico,

    I feel the pain for you. The pain CAN BE avoided if they are willing to learn sign language FOR YOU. I hope that those who are unwilling will read my message wherein I say I feel the pain FOR YOU, Coco.

    Hugs, Jean

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