Sometimes when you are late-deafened, you feel you are lost in a dark, mysterious woods with two people. One is called Hearing, the other Deaf. You have a lantern, but can't light it because you forgot to bring matches. They both possess matches. However, instead of simply lighting your lantern they argue and argue about the best route for you to take home. Each of them pull you in opposite directions. Meanwhile you become cold and frightened and more and more lost.Then, just by chance another late-deaf person comes along who has a match but no lantern. Off you go working together, finding your way by trial and error. The route is lonely and scary. Along the way you encounter a few other late-deaf and oral deaf people struggling to make sense of the trail. You link together lighting each other's way and sharing information about what you've learned of each other's paths. If one of you gets lost or makes mistakes, no one criticizes. No one tells you you're not acting like a Deaf person. No one treats you like you're "impaired." No one sniffs that you've insulted their culture. No one laughs at you when you misunderstand. You all acknowledge that hearing is hard and learning to be Deaf is hard. Eventually you begin to feel comfortable and accepted being neither hearing or Deaf, but rather just a deaf person who speaks and maybe uses a little ASL and hearing aids or a CI, maybe some ALD's sometimes, maybe not, maybe CART, maybe an interpreter, whatever works. . .
Later on when you bump into Deaf and Hearing again, Deaf asks, "Why didn't you follow ME? I had a match, and I would have lit your lantern! You could have learned ASL!!" Hearing asks the same question, reminding you Cochlear Implant was just around the next bend.
You realize you will never be able to follow Deaf or Hearing. They don't understand.
18 comments:
Are we that bad? Hearing and Deaf, I mean...
I am sorry that we strike the late deafened that way. My son started losing his hearing after he turned 3 years old (well, he was officially diagnosed for having mild to moderate hearing loss, so it must have started before he was 3 years old) and he reached profoundly deaf stage at the age of 8 years old. He is 10 years old now. He has memories of music, dogs barking in the distance, birds chirping and his dad singing lullaby songs. He says he never felt he fit in the deaf culture (ISD) and he felt more at home with hearing people. I was born deaf and I admit to once a while thinking "why couldn't my son just simply accept his deafness and move on?" instead of being on the fence a lot of times.
Would be nice to be able to embrace two cultures and have the cultures embrace you at the same time instead of having to make a choice one way or other.
Hi Karen-- I hate to say this, but it's usually worse because normally there are NO Deaf people around at all with matches. I have tried to point this out on a few other blogs. The Hearing are there, waiting to guide us, no Deaf. The reason many hearing parents and late-deafened people go for the CI's is not only because they miss hearing, but they miss BELONGING. It's H-U-G-E!!! If the Deaf would just reach out to these people, Deaf culture would reap tremendous gains and benefits-- especially from those trying to decide what to do about their Deaf children and those trying to put their lives back together after losing a major sense. I have mentioned this time and again in various blogs and feel I'm talking to a brick wall.
The reason I went so willingly towards the Hearing is because we have so few Deaf in this area that if I gave up what I had I would basically doom myself to a life of isolation...not for me :). I wanted to hear more than anything...and am so glad I'm able to again. I still want to learn ASL, though, and be in touch with those that use it...because I think we have a lot to offer each other. I think it's a hugely personal choice, and goes along with the "what do you want?" question. What kind of life are you comfortable with?
As you said earlier, you're more introverted...I'm SO not that way...the more people in my life, the better...so I made the right choice for you. I hope you find the right choice for you, too!! ((HUGS))
I am hearing everything...including my husband snoring so loudly that my head is about to explode. Time to poke him and roll him over! ;)
We are kindred spirits. I have been in those dark, mysterious woods. I know of what you speak. I did choose to follow the Deaf person with the match and ASL was the light for my lamp. That's the path a traveled and it has made all the difference. I chose not to get a CI and hearing aids do not benefit me. My loss is too profound. So the light of ASL was the answer for me. But I have been one who actively reaches out to other late-deafened or heard of hearing or deaf folks who are looking for the light and I invite them on the journey with me whether they use ASL or not. I am committed to helping light the way for others. Continue to tell your story. It also lights the way...
You might find my blog post about late-deafened and deaf people called "Identity vs Role Confusion" fitting in response to your post above. Go here: http://www.earofmyheart.com/wordpress/?p=125
By the way, if you're interested in reading my story of becoming deaf, go to: http://www.earofmyheart.com/wordpress/?p=162 and follow the prompts to each new chapter.
~ LaRonda
Kim,
A very apropos description/analogy of 'just how it is'. I 'hear' you.
Linda
LaRonda,
Thanks so much for posting your links!! I LOVE what you wrote! I can see you have a great understanding of how I feel as a Late-Deafened Adult. I have a Deaf non-oral friend and a deaf-oral friend. Both sign. The first time I was able to get through an entire restaurant dinner without using oral words to communicate was a celebration for me!! Relief in being able to use a natural way of talking without having to hear. I felt like that "Free at last" guy on the poster kicking up up heels naked. Like I was reborn. My Deaf friend gave me a name sign and I felt accepted then. It was an honor. It's a K pointing at my cheek because I smile a lot--especially when I was in ASL class. I am no where near fluent.
Jennifer--I don't think there's a right or wrong thing to do. That's the point. LaRonda has done what's right for her. You've done what's right for you. We must each make our own decision and it's very personal like you said. We all need to learn to respect each other for where we're at. The CI isn't for everyone. Some people can't have it. Some are very HH and don't qualify for it because of the type of deafness they have.
Jennifer--I don't think there's a right or wrong thing to do. That's the point. LaRonda has done what's right for her. You've done what's right for you. We must each make our own decision and it's very personal like you said. We all need to learn to respect each other for where we're at. The CI isn't for everyone. Some people can't have it. Some are very HH and don't qualify for it because of the type of deafness they have.
Thanks, kw. You really express our situation well. Finding your blog has been like a match for me.
Kim,
I am speechless by your story. I can feel it and walk with you on the dark journey. I wish to know the miracle words to say, but I'm happy to learn more what it is really like because I was born deaf and it's different.
Follow your heart what is right for you and don't give up ASL.
I'd love to have alll of us to have coffee and chat together!
My hugs to you,
~Deb Ann
I started a coalition focusing on deaf babies from birth to 18 months of their needs to learn a communication language which is sign language. To learn more about this coalition, deafbilingaulcoalition.com
And lately, I have been thinking a lot about late deafened people and I think that the Deaf community should help these people to start some kind of a coalition about how they can learn ASL more effectively.
This is a whole new ball game for me about your situation and I feel for you and others.
I care,
John Egbert
Ouch.
I just read your comments to Michele (you barked up a wrong tree, so to speak... she is a Deaf radical.) I know her and her hubby and they more or less attacked me online, cyberbulled me, etc., last year when I posted my v/blog about oracy. In real life, they are nice, but online, ahhhh... a different story. Either you know ASL or you are unfit to be *D*eaf ;o).
Guess what, my son auditioned for a solo position on the Xmas choir and we won't know whether he got accepted or not until next week. I think it is cool, but part of me is sad because I was born deaf, so I never really have an inner appreciation for music.
Thanks for your support Karen :) If it wasn't for you, Deb Ann and LaRonda, John, and a few other real NICE Deaf people I've met on-line and in person in Seattle, I would probably run away and hide from Deaf culture. Michele is scary. I am not like you. When attacked, I fight back. I can't help it.
Karen--I meant to add that's so cool about your son. It sounds like he's thriving in his new school. I know how much you want to hear him. My kids have performed on stage before too and I felt sad I couldn't hear their parts. Two of my kids played musical instruments and were in plays in the past. It hurt like heck that I couldn't hear them like I wanted, but they didn't know how much I missed and were simply happy I was there to clap and take pictures.
Hi SpeakUP--Thanks for stopping by. I'm still lost a lot of the time. We can light each other's way. :-)
John-- I know about your coalition. If you start one to help late-deafened folks, I would join it. :-)
Thanks so much for this blog, Kim - it is beautifully written and very, very true. Since I have to be in these late-deafened woods, I'm glad I'm here at this time in history, with you.
hugs,
Melissa
This post has moved me in ways I can't describe. I have been deaf all my life, but am very firmly placed in the hearing world as my family are not deaf.
So, I know exactly what you mean, I am not of the Deaf community, yet I struggle with the hearing community from time to time.
I too wish that everybody would just accept people for who they are and not whether they are deaf, hearing or can sign or not. (I have been in the situation where I have been insulted because my sign language is pretty poor!)
Clearly, the ideal situation would be for everybody to automatically know both languages and so that everybody could communicate with everybody without feeling socially ostracised.
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