Tuesday, July 17, 2012

Genetics: Deaf By Design

This is kind of old news. Nonetheless, it is an interesting one. I am sure that many of you have heard about Designer Babies. In a nutshell, it is pretty much about which genes to choose from to create a perfect child of your dreams. Let's go even deeper with this especially with the issue of Deafness. 

In 2008, a Deaf couple was denied by a fertility treatment center not because they were seeking for IVF treatment to become pregnant, but rather because this couple requested to be fertilized with an egg that increased the likelihood of them conceiving a Deaf baby. It even went far to the point of Government Fertilization and Embryology Bill to be passed through the Parliament to ban any unique request to have a fetus that may end up with a disability. Basically, any flawed embryos that were donated to the fertility treatment centers were immediately discarded and not to be used for IVF treatments. 

This couple, enraged, said "If hearing people were to have the right throw away a Deaf embryo then we as Deaf people should also have the right to throw away a hearing embryo." 

Hmmm...alright. From a standpoint, I can understand. In Deaf culture, to be blessed with a Deaf child, especially to Deaf parents, is a very big deal. Deafness, to majority of Deaf people who consider themselves to be culturally Deaf, is not a disability. It is the way of life. It is an opportunity for Deaf people to pass on their culture to their children. Several of my Deaf friends, who have children, admits that they secretly want their child(ren) to be Deaf. There is a deeper bond between Deaf parents and Deaf children. To have hearing children does not spell the end of the world to many Deaf parents. They still love their kids, Deaf or not. Even so, some Deaf parents find it challenging to have hearing children due to cultural clash, lack of communication, and less ability to relate to their hearing children. 

There are several Deaf couples, straight or lesbian, that have intentionally chose their partners/sperm donors based on their genetic make-up to increase the likelihood of having a Deaf child. Most of the time, they do end up having a Deaf child.

To the hearing world, it can be astonishing. They question why would anyone want to intentionally cause a disability upon a child. Any good parents would want their children to have better lives than they have.  Deafness, to hearing people and some Deaf people, is an obstacle to having a full access to life. Why would anyone want to take away the quality of life of a child especially before he/she is born? It means the child would have to face issues of living in the hearing world such as isolation, social barriers, fighting for equal rights in workplace, right to have an interpreter, finding accommodations to live with his/her deafness, and constant education about Deaf culture. Unfortunately, ugly words and statements have been thrown around at Deaf parents, who seeks for an additional screening or help, to have a desire to have a Deaf child of their own.

That is something I also understand. It is difficult to be a Deaf person trying to survive in the hearing world. I do face obstacles, frustrations, and from time to time, social barriers. Fortunately, I am equipped with an ability to adjust and accommodate my Deafness to overcome most of the obstacles I face in my life. It is not something I want for my unborn son. I want him to have a better life than I do. I want my son to experience life at the fullest, to have a freedom from obstacles, and frustration of having a disability. Do not get me wrong; I don't view my Deafness as a disability, but I am also cognizant enough to realize that it IS a disability in the hearing world. 

At the same time, if my son has some kind of hearing loss or wind up Deaf then it is not the end of the world for me. I know what kind of life skills to teach my son in order for him to survive in the hearing world. I will teach him how to embrace his Deafness rather than feeling so ashamed about it. Either way, I will love my child no matter what.

I am not a believer or an advocate of creating designer babies including screening to increase a likelihood of getting traits parents want for their child. I see nothing wrong with conceiving (whether through the old fashioned way or IVF treatment) a baby as what there is present to create a life. At the same time, I would not go that far of calling Deaf parents selfish or arrogant for wanting a Deaf child. 


1 comment :

  1. I am really glad to have discovered this post. I had heard before that many Deaf parents desired Deaf children, but never really understood it. After all, as you've said, what parent wouldn't want a better life, and better opportunities, for their child than they had. But I never considered it from the angle that you presented, in terms of how parent-child communication and a sense of bonding might be affected if a hearing child is born to a Deaf parent or parents. So very insightful, I am tearing up a little thinking about it.