The pressure began as soon as Jacob was born. Doctors told Donna and Marian Mahoney that their son was deaf, but that he could be “cured.” Doctors wanted them to give their son a cochlear implant so that he would have the ability to hear. The couple declined. Now at five years old, Jacob is a happy, inquisitive little boy that is at the center of a documentary project called “The Audacity to Exist.”
The Mahoneys have three children: 14-year-old Halee, 5-year-old Jacob, and 3-year-old Justin. Justin is also deaf, as are Donna and Marian’s parents. The couple knew each other growing up because their fathers had been friends. At five years apart, they were not close back then, but met up later in life and fell in love. Both have pursued careers in service to the deaf. Marian has done social work and interpreting, and Donna does interpreting. Currently Donna is a regional director for Sorenson Video Relay, a service that enables deaf people to communicate with hearing people over cell phones.
When Jacob was born, they were excited to have a deaf child. They shared the news with all their friends, including Ryan Commerson, a deaf film director who used to live in Michigan. His production crew, Facundo Element, is made up of all deaf individuals, except for their sound person.
“Jacob’s story is, unfortunately, an all-too-common story. Jacob, however, has two wonderful mothers who ‘get it,’ and they have honored us by welcoming us into their personal lives to witness and document their journey,” Commerson said. “Jacob and Justin are both bright lights. We want to do everything we can in our power to inspire the world to embrace and celebrate the beauty that they bring to the spectrum of human diversity. Every team member in our production crew (with exception of the sound person) is deaf. We see Jacob in ourselves and understand what he and his family must face. We want the world to see itself from his perspective.
“Stories told about deaf people are never told from the lens of a deaf person. This innovative project is a gift that we look forward to sharing with the world.”
They are currently accepting donations to fund the film project. With a goal of $75,000, they have collected $2,000 on their website http://www.audacitytoexist.com.
The project looks at the family and their decision to decline an implant for their sons. It focuses mainly on Jacob and the bright personality that he shares with his classmates and family.
For Donna being born deaf is no different than being born gay. “If my parents knew I was going to be a lesbian and there was some magical pill they could have given me to be straight, should they have done it?” she asks. “No, this is the way I was made. Deaf people aren’t sick or disabled; they don’t need to be ‘cured.’
“Jacob and Justin, as well as Halee, are allowed to be themselves and to explore life with their own eyes (of course with guidance), but we don’t force them to be something they are not or be something that we think is better or easier. We want people to know that being deaf is beautiful and something that is meant to be, we shouldn’t be trying to cure or fix something that isn’t broken.”
The mothers cherish the way the boys see and interact with the world. “We’ll be walking down the street and Jacob will see things I don’t even notice. Like way up ahead there could be a robin in the road, and he’ll show me. Their other senses are so much stronger, and who knows what we are stifling by not letting them develop naturally?”
She went on to say that maybe someday a deaf person will use their heightened senses to discover a cure for cancer, because they may see something that other people don’t notice.
The issues the Mahoneys face stem from ways that society fails to adapt to support its deaf community members. “Businesses are required to provide interpreters, but a lot of times they just expect us to do it,” Donna said. She pointed out that schools only expect deaf children to learn to read to a fourth grade level, and it’s hard to get assistance if a child is on par with that standard.
“Michigan as well as many other states, have not taken on the responsibility of educating deaf children and then they turn it around and blame the deafness when they are failing. They try to educate deaf children just like they educate hearing children. ASL is a visual language and of course you learn differently – not worse – just differently. Schools are considered a ‘successful school’ when deaf children graduate with a 4th grade reading level. If this was happening in the hearing community, parents would be throwing a fit and demand immediate change.”
Another concern is that cochlear implants are marketed to parents of deaf children without a full understanding of how they work or what alternatives there may be. “People are not told that they can do anything that any other normal human being can do without hearing. You can be smart. You can run a marathon. You can play football. Learning sign language is an alternative to implants but parents aren’t told about it,” Donna said. Jacob attends school in Ann Arbor and is involved with a lot of activities like t-ball, soccer and swimming. “He has a knack for drama. He doesn’t suffer from anything. He wants to play drums so he’ll be taking drum lessons this summer. We don’t think of that as a barrier.”
Over 220,000 people have cochlear implants which have been evolving since the late 1970s. The devices do not provide the full range of sounds that a hearing person experiences, but those with the devices can hear speech, environmental sounds and some music. In order to be most effective, implants should be done by age two so that the child can develop speech as well as hearing. The critical period for learning to function with an implant is up to age 9. After this, a person has a significantly harder time adjusting to the implant.
When asked what would happen if Jacob wanted the device later in life, Donna was unconcerned. “We firmly believe Jacob wouldn’t want to do that. We come from a family when you truly embrace a person for who they are there is nothing in his life from his standpoint, that he lacks. If he does bring it up it will only be because of outside pressure. We’ll have a family discussion, but even then it will be a serious talk. Again, if I was 16 and someone offered me a magic pill not to be gay, I might have taken it. It’s easier to live life as a straight person, but that doesn’t mean that someone who is gay should want to be one. I don’t think that at 16 you really know who you are to make that decision.
“As hearing people we have something to learn from deaf people and society hasn’t event tried to accept deaf people for who they are – living, breathing human beings that aren’t missing anything that prevents them from functioning in society.”
“There are people who do think we are awful because we don’t give him the most opportunity,” Donna said. “Every family is different and I don’t go running up to other parents questioning why they would change their child…I’d rather have to answer the question of why we didn’t do an implant versus why we would try to change him and make him something he is not.”