Yesterday, I promised that I would write today's blog on my deafness. I rarely make promises, and when I do, I try very hard to keep them.
A friend had taken note when I shared my first blog, asking, "you described everything about yourself, but the fact that you are deaf". He did have a point. I didn't think about it. While I've been deaf my entire life, and, I'm sure, it plays a large part in defining the type of person I am, it doesn't consume my every waking thought.
Now, before I go any further, I KNOW I am going to offend some of my deaf friends. I know that many of my hearing friends really won't "get it". These are my thoughts on my deafness - right or wrong. I'd love to hear your comments, but, again, please be kind.
For all intents and purposes, I am deaf. My left ear has no functional hearing and, I've often said, is only on my head for decorative purposes! My right ear has a severe loss and I wear a hearing aid in that ear. My friends know to walk on my right side when we're out, or sit on that side when we're in a restaurant. Without my hearing aid, I only hear very loud sounds. I have no sense of where sounds are coming from either.
There are some advantages to this! I don't hear gossip. I don't hear negativity. I sleep through the night without being woken by traffic, sirens, dogs barking and other noises. I have often asked myself how hearing people get enough rest with all the noise they must filter out. I tease my family and say they are the ones who have a "disability", not me since I can control when I hear, and when I don't. Really, the only time my hearing aid comes out is when I shower and when I go to bed. I cannot sleep with my aid in, period.
On the other hand, I expend more energy than a hearing person communicating. It takes a lot of concentration to understand someone. I need to lipread and can't write notes and watch someone speaking at the same time. I have to educate every new person I meet, to please look at me when they speak. Aside from looking at me, I ask them to please, be comfortable and speak normally - no need to shout or over-enunciate their words. If I can't hear you, I will tell you! You will know if I can't hear you because my answer will be completely "off the wall". Case in point. If someone asks me my name and I answer, "fine", you can pretty much guess I didn't understand you! I have a pretty good sense of humor about it all. While I can talk on the phone, again, it takes a lot of concentration and patience/repetition from the person on the other end.
But, this is who I am. If you can't deal with the little extra courtesy it requires to speak to me, I'm not going to bother. Remember, it takes me just as much, if not more, effort to understand you. You can walk away from it after our conversation is done. I can't. My kids are the ones who get offended when people are rude. Me? I don't hear them. So, whatever.
Do I want a cochlear implant? NO! I can function with my hearing aid just fine. Do my kids sign? Again, no. Heather knows some, but it's not used much in my house. Ethan tells Steve and I to stop waving our hands around (this coming from my blind kid!). I do wish I had taught them more and promised my kids that their children WILL learn sign language from their grandmother. Do I care if others have a cochlear implant? No. It's a very personal decision for each individual.
Now, if you were to meet some of my Deaf friends, they would be appalled. Cochlear implants are not necessary because nothing needs to be fixed. It's not their problem if YOU can't talk to THEM. You should learn ASL (American Sign Language) - which is not the same as signing English. ASL is a completely different, recognized language. I've been roundly criticized for not attending a church with an interpreter. For not attending deaf clubs. For not marrying a deaf man. Shock! This is where I say, my deafness isn't what completely defines me. I choose my friends for their hearts, not the fact of whether or not they can hear. I love my husband. The fact that he's hearing means he can hear. So, he listened for our kids when they were babies at night and woke me when they needed attention. We've been married for more than 25 years and if someone were to pay him a nickel for every time he patiently repeated or signed something for me, he'd be a very rich man!
I could spend weeks blogging about this. There are heated debates about the use of ASL vs speech, the use of cochlear implants, schools for the deaf vs public schools. I could go on. I think it really boils down to each family making the best decision for them. No, my parents didn't sign and I went to a public school and wore hearing aids. I adapted. My parents and brothers adapted too. It just was what it was and no one gave much thought about it. I went to Gallaudet University because I did want to be involved with Deaf Culture and meet more deaf people. I made some fabulous friends there that I'm still in touch with today. But, I refuse to lock myself in a hearing world, nor will I totally embrace the deaf world. That's not who I am.
And who you are is just perfect!
ReplyDeleteWell, well, well. Listen to you. Being Sandy. I love it! How you identify and how you live your life is such a personal thing.
ReplyDeleteI, too, am deaf. I self-identify as hard-of-hearing. For me, this indicates my unwillingness to divorce myself from speech and listening. I will use all of my communication modes (ASL through spoken English) as I see fit.
My parents are deaf, my father was raised by hearing parents, my mother was raised by deaf parents. They both have deaf siblings and attended Schools for the Deaf with their siblings.
When my parents realized they had two deaf kids, they opted to speak to us, ASL was used as support when we couldn't understand each other (As we got older, my sister and I signed with our parents more frequently. We now sign with our father all of the time.), send us to public schools and allow us exposure to the Deaf community through their friends and social events with other Deaf people. I think simply, they wanted to raise us at home, under their care and supervision.
I, like you Sandy, married a hearing man, my husband has minimal signing skills, but a fantastic voice. It is one of the MANY reasons I chose him to marry. (Being smart, cute, funny and very loving are some of his better qualities.)
We have a daughter who was hearing until she was three-years-old or so. She is now deaf like me. We are not sure how this deafness occurred, but suspect it is genetic. Hearing level drops are not routine in our family, but may provide an clue about my father's ability to speak at a young age with a profound bilateral hearing loss of 104dB.
Willa has had ASL exposure since birth, from me, but prefers to speak. Her preference for communication may change as she ages, or if she loses more hearing. As it is now, Willa's preference is clearly to speak and use her hearing. I will respect that choice. I do continue to sign with her, though she often says to me now, "Mom, I can't hear you."
The deaf gene continues for yet another generation in our family. I think we are at five generations of deaf family members now. Willa is in generation four and it is almost 100% certain any child she has will have a hearing loss. 'Those who are deaf have deaf children' is the pattern we see in our family, with the exception of only one cousin. All four of her daughters are hearing.
I support Deaf people choosing the manner in which they want to live their lives. How one experiences the world is so individual, I couldn't say that one path is the correct one for ALL.
Mel -
DeleteI really think you're the exception to someone who has such strong ties with the Deaf Community/Deaf Culture. Most deaf people that I meet, are very opinionated on how a deaf child should be raised and what I should and should not do. Again, that's my experience. I'm not sure why they are compelled to feel that way when I am not at all unhappy with my deafness or my life. The only time I get "perturbed" is when someone would get angry at me for not hearing them! I mean, REALLY? It doesn't happen often, let me assure you because I am not afraid to give them an earful (this would apply to someone who knows that I am deaf).
I did not know that Willa was deaf. If she grows up becoming fluent in speech and ASL, well, then more power to her! I give you respect for respecting her choices, even as a child.
Sandy, your blog is well-written and it came from your heart. Nothing in your blog offended me and it shouldn't offend others. Remember you are the sole owner of your life and how you want your life to be run should be by you, no one else. If it works for you, it does! If would be offensive if anyone tells you their ways are better for you. You did not say what we the Deafies should do or what hearing people should do. All you asked that they adjust to your ways to make it work for you and them when you communicate with each other. For example, I am not good at lipreading and you admitted to me a while ago that your ASL skills are rusty, that's fine because you and I will find ways to communicate with each other. You would not tell me to go take speech classes and I don't tell you to go take ASL classes. You are very happy with the ways they are at home, GOOD. Leave that way. If you wish for more, you can always ask. Teaching your grandchildren sign language so they can chat with you, that's beautiful. Great job for explaining to everyone your needs and ask them to work with you until all of you are at a comfortable level in communication.
DeleteI'm an old friend of Sandy's (and the one who pointed out she totally omitted the fact she's Deaf). While I can respect the choices she's made for herself (she's an adult, after all), I have to say that I could not live that way.
ReplyDeleteI'm Deaf (with a hearing aid, I'm more "hard of hearing", whatever that really means, although after I got vertigo some 15 years ago, I haven't been able to wear a hearing aid again). I can talk very well, if I choose to. I can lipread most people some of the time, in a one on one situation.
But, I prefer to sign than to talk, even with Hearing people that don't know sign. I choose not to try to lipread most people beyond short utterances. Why? Because I've found that when I use my voice, this seems to signal to Hearing people that I have absolved THEM of any responsibility in communicating with ME; that I will do ALL the work for THEM (speaking in the modality that THEY are most comfortable in, and working hard to understand what THEY are saying, while THEY have to do NOTHING "extra" to interact with me), instead of meeting me HALFWAY -- by writing, using gestures (and being willing to understand mine), or some other mutually acceptable means of communication. Same goes for lipreading -- when Hearing people ask me "do you lipread?", it's really code for "I want you to do the work of understanding me".
Asking Hearing people to change their behavior doesn't work. They might for a few minutes, but then they go right back to their old habits -- covering their mouths, looking away while they talk, mumbling, etc. And it's not just strangers either. It's my own family too.
Growing up, my whole childhood and adolescence was one big, long speech therapy lesson. Been there, done that. So, marry a non-signing Hearing person? Have to lipread them all the time? Have to talk to them all the time, and they have to do almost nothing to accommodate me? Have my kids not know sign and I can't understand them? No thanks. Homey don't play dat no mo'!
Don -
ReplyDeleteThanks for taking the time to share your version. It's one I can completely understand and don't blame you for feeling the way that you do.
Yes, I am more "hard of hearing" with my aids vs profoundly deaf. I hear constantly from people I've met for the first time, "do you read lips". I hadn't thought about it placing the burden of communication on me. The way I see it, if I've told them what I need in order to understand, they can just keep repeating until the cows come home. I will focus, arrange myself for good visibility and use all the skills I have. It takes two willing people for good communication. Obviously - and correct me if I'm wrong - the brunt of communication was placed on you.
Surprisingly, I didn't have much speech therapy growing up aside from a few sessions in school. More on that later.
Again, like Mel and Kathleen and I, you are arranging your life to suit your needs and to fit your comfort level. I can't imagine your wife and children not signing with you, or you tolerating that! =)