Submitted by Laurie Rubin
A few months ago, Jenny was taking a required special ed class at Columbia for her music ed degree, and one of the assignments was to watch one film a week. Each film featured a person or a handful of people with various disabilities. A few times, I'd venture over to the Teacher's College library with her to watch one or two of them. I was kind of curious to know what other people with disabilities face in terms of life challenges since my knowledge of disabilities is limited to my own experience of blindness.
One of the documentaries we watched was called, "The Sound and the Fury." It was about two couples who both had deaf children and who were faced with the decision of whether or not to have their children implanted with a relatively new technology called Cochlear Implants. These devices which are literally implanted into the brain allow a child who is born deaf to have the option to hear. However, since the crucial developmental stages for children take place between the ages of 1-5, it is almost imperative that the device be implanted as early as possible. If an older child or adult decides to get the cochlear implant later in life, the chance for the person to develop clear speech and an understanding of sound is slim.
The film focused on the story of two different families. One set of parents was deaf and all their children were born deaf. The other couple was a hearing couple, and their son was born deaf.
The deaf couple had a very happy, social daughter who was about 4 years old. She had both deaf and hearing friends, but was very frustrated that she had trouble communicating with her friends and family who were not deaf. Seeing her frustration, her parents decided to research the cochlear implant. However, they had reservations. They felt that if they decided to have her implanted, they would be sending her the message not to be proud of who she is as a deaf person.
Many people who are deaf have formed communities where they are not considered disabled. They can communicate with each other with the use of sign language, and are able to drive, to have children, and to do most things in life that hearing people enjoy as having a rich, full life. There is a very strong deaf culture that people are very proud to be a part of.
The hearing couple in the movie along with most of the world did not understand this culture, and felt that it would be child abuse not to have their child get the implant. So when their son was 11 months, he went into surgery to have the cochlear implant put in.
The movie was quite heart wrenching. It turned out that the deaf couple opted not to have their daughter implanted. I found my heart breaking for the little girl who had herself requested the implant, and really longed for the ability to fully communicate with everyone around her. The hearing grandparents kept screaming at the deaf couple, saying that they were abusing their daughter by not allowing her to have the choice, the best life possible. The deaf couple felt betrayed, and felt their parents were telling them that the little girl should be ashamed of who she is as a deaf person, and therefore should be forced under the knife to change when she was perfectly fine the way she was. In fact, one of the deaf adults said with much emotion, "What if there is a world in the future with no more deaf people?" Her words have been ringing in my ears since I left the school library with Jenny that evening, and they started a thought process which led to a very long and entire philosophical question over tea and cookies that lasted the rest of the evening.
Jenny and I both felt broken hearted for the little girl whose option to hear was taken from her, and uplifted for the little boy who was granted the gift of hearing by his parents. But those words, those words so filled with hurt and genuine worry for the way the world might some day all be a world of hearing people ached inside me too, and they led me to ask Jenny, "How would you feel if one day, they discovered the *gay* gene, and then were able to make a baby straight through gene therapy."
As we sat in silence thinking about this for a very long time, the true dilemma and hurt the deaf couple faced as they were pressured by their own parents and families, being told they were abusing their child hit Jenny and I in the heart like a ton of bricks. All of a sudden, we could hear the voices of our straight relatives and friends saying similar things echoing in our ears.
"How could you want this life for your child?" they would say.
"Why would you want your child to be thought of as a freak by society? Don't tell me there's a gay culture, it's a disease, it's a handicap!"
It was then that I understood the true betrayal the deaf couple faced in feeling their family seemingly turn against them. Suddenly, I saw a world with no drag queens, no male interior designers, no Judy Garland fans, no Rent, no lesbian folk singers, no Harvy Milk, no gay brother of my own, no pride in being different, nothing to fight for. My heart dropped into my stomach. The very person I am suddenly could imagine the thing that would immediately make me lose my will to live, seeing a world homogenized for the sake of no individual having to face adversity. Didn't Mozart face adversity amongst his musical colleagues? Didn't every Nobel Peace Prize winner have a difficult life? Didn't Martin Luther King, John F. Kennedy, and Bill Clinton have people who passionately disagreed with them enough to bring them down? Would we genetically engineer them in any way to take the individuality and heroism out of them?
As a blind person, I have been asked if I would have corrective treatments or surgeries if I could so that I could have sight at this point in my life. I always say, "No." I quite like the way I have envisioned colors, the way people look, the way the ocean's waves rhythmically swell and break. I like the character I have built through the many struggles I've had and challenges I've overcome. I respect the empathy I feel towards others who feel a similar isolation in society that comes along with being different.
Sure, the nuisance of logistical things taking longer, or my being wistful to drive often make me curious about sight, but as a woman approaching 30 who has never even known what the sense of sight really is, I don't see myself starting all over now to rebuild my world. However, as someone who wants to be a mother, of course I would want my child to have it better than I did. If he or she is born blind and there is a way to correct that blindness from birth with no ill effects, I will do it in a heartbeat.
I understand now that the deaf couple does not see their daughter's being deaf as a disability. I myself do not see my being a lesbian as a disease. I have the most loving partner with whom I have conversations with about everything until all hours of the night. I would not trade the relationship we have in for a marriage to a man and having kids the traditional way, even if society would recognize that and not what Jenny and I have. If my son and daughter are gay, there is no pressure I could face that would make me decide to try to make them straight, no matter what technology or gene therapy is out there.
In my view, there are two many Asians having the double eyelid surgery to look more "white." There are too many black children afraid to go to a black doctor because it's been instilled in them not to trust anyone who isn't white. There are too many internally homophobic people. There are too many people living in shame with their disabilities. The world where you can "perfect" every unwanted trait is a world without diversity, a world without different perspectives, and a world without depth.