Monday, February 15, 2010

Shanna's Lip Reading Life: My Culture

Q: What would you call yourself—hard of hearing, hearing impaired, Deaf, deaf, a person with a hearing loss, etc? Why?

A: I consider myself hard of hearing. I am halfway between the hearing and deaf worlds. I was raised in a hearing family, and my hearing loss was diagnosed at the age of 27. Thus, I identify most with the hearing world.

Q: How did you lose your hearing?

A: The cause is unknown, although I have a family history of hearing loss on the paternal side of my family (an uncle, aunt, two cousins with profound hearing loss). My loss was diagnosed in 2001 after the birth of my first child. I had developed a persistent ringing (tinnitus) in both of my ears and went to the doctor for a hearing test. Progressive hearing loss was diagnosed.

Q: What has been the biggest challenge for you with your hearing loss?

A: Initially, I had a fear of the unknown future. Would my hearing loss make work and relationships difficult? Would I be able to understand my young children’s delicate voices? Currently, my greatest challenge is knowing when to shut up about hearing loss awareness! I am on a mission to inform, educate and inspire people about what life is like with a hearing loss.

Q: What bothers you about your hearing loss?

A: I have difficulty with speech comprehension in most phone conversations and in noisy face-to-face situations. In a perfect world, everyone would speak clearly, with strong articulation, and would come with a closed captioning device attached to their foreheads so I could understand them completely.

Q: Does a hard of hearing community exist? Who are the people within it?

A: I think it does with my tight circle of hard of hearing friends. The people I’ve met through the Hearing Loss Association of America (HLAA) have become my hearing loss community.

Q: What is the Deaf culture, and what is the hearing culture? Where are you, and why?

A: The Deaf culture is a community of people who consider American Sign Language (ASL) their first language. The hearing culture includes people who have normal hearing and have been raised in a predominantly hearing family. In some rare instances, hearing children are born to deaf parents. Would the children be part of the Deaf or hearing cultures? It would be up to the family to decide.

Q: In what ways have you dealt with the positive and negative aspects of your hearing loss? Give specific examples.

A: I have written extensively about the highs and lows of my hearing journey. I have written Lip Reader, a novel about hearing loss. I blog about hearing loss. I speak to large and small groups about my hearing loss. Anyone who has the time, I will share, through the written word or orally, what being hard of hearing means to me personally.

Q: Can you name an instance of when you were ashamed of your hearing loss?

A: When I misunderstand a waiter, cashier or stranger and bluff my way through the conversation—only to be told by the person that I bluffed—that is embarrassing.

Q: How do you want to educate others?

A: I want to write, speak, perform my writings, and advocate through organizations, such as HLAA, about hearing loss awareness.

Q: What does advocacy mean to you?

A: It means asking people for what I need to function and thrive. It means asking someone to repeat a question because I couldn’t understand them due to my hearing loss. It means suggesting that a place of worship provide Communication Access Realtime Translation (CART) or other hearing assistive technology during its services. It means teaching my three children that they shouldn’t make fun of people for wearing hearing aids, being unable to hear well, or being “different.” It means modeling to my family, friends and those around me that hearing loss is best handled with acceptance and grace, not shame and fear.


Karen said...

I grew up hard of hearing and became deaf at the age of 19. I picked up ASL skills along the journey. I used to ask myself, "who am I and where do I belong" and I discovered I'm just Karen and I belong everywhere. :)

Mann said...

My abilities are not defined by my lack of hearing. My willingness to learn and share knowledge, my insatiable curiosity about the world around us, my compassion for others, my sense of humor, and my perseverance in the face of great difficulties are the attributes by which others should judge me. Those people who fixate on my lack of hearing rather than seeing all that I am and all that I have accomplished have more of a disability than I will ever have. They deserve my condolences and my pity; they do not deserve my time or my effort.

Shanna Groves said...

Karen, I love your "I belong everywhere" quote. Very honest and poignant!

(e said...

I was born with my hearing loss and it was not something I really thought about until I started learning ASL and became friends with other deaf and hoh people. I do not consider myself to be either deaf or hearing. I am in between. It can be frustrating, I sometimes feel like I have to choose (am I Deaf or am I more hearing?). I am looked down upon by some culturally Deaf people when they find out I am not a fluent signer or when I say I am not deaf. Well, not really deaf.
It is just as frustrating with hearing people. I am always mishearing things, asking others to repeat themselves, or bluffing my way through. It really is embarrassing when they find out. I totally know what you mean.
But, it makes life interesting and I would never go back in time and ask to be born with perfect hearing, if I could.


SpeakUp Librarian said...

[In a perfect world, everyone would speak clearly, with strong articulation, and would come with a closed captioning device attached to their foreheads so I could understand them completely.]
Very well said! I agree completely.

Karen Fish Photography said...

My daughter (now 4) was born with a moderate hearing loss. She has been in hearing aids since she was 4 months old, so she knows no other reality. (I know she does realize her hearing aids are different, though, as she will excitedly point it out when she sees someone else wearing aids.) We got her aids in pink with sparkle ear molds - we want her to grow up feeling that she has absolutely nothing to hide. I guess, unfortunately, reality is that people (especially kids) can be cruel, and there may come a day when my precious little girl is made fun of or looked down upon because of her hearing aids. I can only hope that the strong spunky spirit I see in her now will carry her through that with grace!