Somewhat Silent

In 1986 when my daughter Sarah lost her hearing, the doctors tried to push my and her dad to ok a then pretty experimental cochlear implant. Not agreeing with much of anything a doctor has to say, I didn’t think much about it. The doctors began to treat me as if I were a bad mother.
The audiologists, however, let me know that my attitude toward Sarah’s hearing loss was refreshing and frankly nice. Other parents, they told me, would come to them DEMANDING that they somehow “make their child ‘normal’ and ‘perfect’ again!” Sure I hoped Sarah’s hearing would somehow miraculously return, but I never considered that if it did not, my beautful intelligent happy child was now or would ever be less than perfect, whatever that was!

I told the doctors that if they removed the insides from my child’s ears, in upcoming years, should there be suddenly a repair for damaged nerves, she would be out of luck. Back then, the hearing aides only amplified the confusing noises her nerves sent to her brain. It was more frustrating to her than not being able to hear! Ditto for “auditory trainers” which many schools used then in an attempt to get deaf children to speak English.

I read about how in the past, schools would beat children who tried to speak in deaf schools which stressed sign only. There were so many politics in the world of the deaf (Deaf?) that I resolved to just help my daughter do what she wanted to do and leave the rest for her to decide when she became an adult.

I have never been sorry that I didn’t cave into the pleas of the doctors who clearly wanted to use my child as a guinea pig for their own glory.

It would be so nice if all people could be merely accepted as we are, with no attempts to turn us into little clones of eachother. We are all wonderfully different, and that should be celebrated!

…and the contrast between my young daughter’s way of dealing with hearing loss and my older mother’s way, at 80, was startling.
Whereas my daughter demanded that she find ways to communicate and be communicated with, insisting that I learn email and Instant Messaging, my Mom retreated into her deafness. She refused to learn the computer, or to use the TTY we gave her. Her hearing loss appears to have been precipitated by a strong round of antibiotic which saved her life, but destroyed her hearing. I ttried to teach my Mom emergency sign language, as her hearing only becomes worse. But she resists that and so far only knows the signs for “bathroom” and “I love you”. Mom says when she can’t hear at all, we will just write notes.
Where my daughter found means to be an indepenent, well rounded, vital person who happens to be deaf, Mom has become first someone who can’t hear, even with a new digital hearing aide, and a person who everyone must do things for. She has become dependent upon a resentful boyfriend, and her only child, me, to make phone calls to doctors and utility/ repair companies. Her social life consists of going to gambling establishments.
I wonder if the age at which one loses one’s hearing… or the cause of one’s loss of hearing… makes a difference in how one reacts to the situation.
I think it depends upon the person herself.

When my daughter was almost 6, she lost her hearing. That is to say she had a bilateral almost identical loss of hearing in the human speech frequencies. Just the opposite of old age deafness, they said. It could possibly have been caused by the herpes virus as most of her classmates had come down with chicken pox then. The doctors at Mass Eye and Ear suggested steriods to minimize the swelling and damage to the ear nerves. I didn’t feel that I could make a decision like that which may have rendered my daughter unable to have children, so i declined. Later I learned that the herpes virus and steroids combination had killed children.
The school system was not supportive then in 1986, so I had to go to kindergarten each morning with her until they got an interpreter. I made my older children and husband take sign language lessons, but my youngest didn’t want to learn sign. She wanted to stay at school with her friends, so that’s what we fought for. The schools back then were just about totally uncooperative with my requests for interpreters and my daughter grew progressively more angry at the situation. At last I signed her out of school at 16. When her class graduated, she took the GED test and received the highest recorded scores at the junior college where the test was administered.
I understand that today, a parent could win a law suit if similiar treatment was given by a school system. But we went through it all in our time and in our way.
I always thought that my daughter gained more of an ability to read and to use words because of the deafness pushing her more into books and solitary thinking than most kids her age. She was also not overly influenced by television at a young age. Today she is a fine writer and a formidable debator! I think her deafness helped her to become aware of people and psychology in ways that never would have been if she had not lost her hearing.
She is held back only by a society that doesn’t believe that ALL citizens should have equal access to ALL things. Movies should be CC’d and radios should have digital readout of the broadcasts to name a few inequalities.