Quote from source
The following issue is taken from Michael J. Sandel's The Case against Perfection: Ethics in the Age of Genetic Engineering (Cambridge, MA: The Belknap Press of Harvard University, 2007. pp 1-2):
A few years ago, an infertile couple decided they wanted to have a child, preferably a deaf one. Both partners were deaf, and proudly so. Like others in the deaf-pride community, Duchesneau and McCullough considered deafness a cultural identity, not a disability to be cured. "Being deaf is just a way of life," said Duchesneau. "We feel whole as deaf people, and we want to share the wonderful aspects of our deaf community-a sense of belonging and connectedness-with children. We truly feel we live rich lives as deaf people."
In hopes of conceiving a deaf child, they sought out a sperm donor with five generations of deafness in his family. And they succeeded. Their son Gauvin was born deaf.
The new parents were surprised when their story, which was reported in The Washington Post, brought widespread condemnation. Most of the outrage focused on the charge that they had deliberately inflicted a disability on their child. Duchesneau and McCullough denied that deafness is a disability and argued that they had simply wanted a child like themselves. "We do not view what we did as very different from what many [. . .] couples do when they have children," said Duchesneau.
Is it wrong to make a child deaf by design? If so, what makes it wrong-the deafness or the design? Suppose, for the sake of argument, that deafness is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time in their choice of mate and, these days, in their use of new reproductive technologies?
A few years ago, an infertile couple decided they wanted to have a child, preferably a deaf one. Both partners were deaf, and proudly so. Like others in the deaf-pride community, Duchesneau and McCullough considered deafness a cultural identity, not a disability to be cured. "Being deaf is just a way of life," said Duchesneau. "We feel whole as deaf people, and we want to share the wonderful aspects of our deaf community-a sense of belonging and connectedness-with children. We truly feel we live rich lives as deaf people."
In hopes of conceiving a deaf child, they sought out a sperm donor with five generations of deafness in his family. And they succeeded. Their son Gauvin was born deaf.
The new parents were surprised when their story, which was reported in The Washington Post, brought widespread condemnation. Most of the outrage focused on the charge that they had deliberately inflicted a disability on their child. Duchesneau and McCullough denied that deafness is a disability and argued that they had simply wanted a child like themselves. "We do not view what we did as very different from what many [. . .] couples do when they have children," said Duchesneau.
Is it wrong to make a child deaf by design? If so, what makes it wrong-the deafness or the design? Suppose, for the sake of argument, that deafness is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time in their choice of mate and, these days, in their use of new reproductive technologies?
My response:
Deaf: Culture vs. Disability
In 2002, a couple who could not conceive naturally decided to seek out a sperm donor so they could have a child. However, the couple had a specific criterion for their donor. They wanted a deaf man. Both of the parents were deaf, so they wanted to have a deaf child. They found a fifth generation deaf man to serve as the donor, and they successfully had a deaf child. When their story was printed in the Washington Post, they were surprised by the negative backlash they received. Many thought that attempting to make your child deaf by design was wrong. The couple defended their decision. To them, deafness was not a disability but a culture, and any normal parent wants their child to be a part of the same culture as the parent. What the couple did was wrong. Their decision was unethical because even if deafness is a culture, it is still a disability and intentionally inflicting a disability on your child is wrong.
Deafness is not a disability, but a culture, the couple argues. "Why shouldn't parents be able to go ahead and pick a black donor if that's what they want?" asked one of them. To them, deafness as a culture overrides deafness as a disability. Their desires to raise their children as members of the same culture are as normal as any other parents’. And to an extent, they are correct. There certainly is a deaf culture. But to believe that since the culture exists around a condition, the condition stops being a disability is an absurdity and a fallacy. The culture sprang up because there was a group with a strong similarity, not the other way around as the couple seems to argue. This is not to denigrate deaf people; the view that deafness is not a disability is a testament to their perseverance and determination to succeed. But it would be silly to think that deafness is not a disadvantage. Besides, why would it be listed along with blindness and paraplegia in the Americans with Disabilities Act? A blind culture and a paraplegic culture exist, but both are still disabilities. The deafness as a culture defense is not a sound one.
Even if the couple had given birth to a hearing child, the child would not be separated from deaf culture. A hearing child growing up in a deaf household would learn American Sign Language, or ASL for short. And according to deafculture.com, deaf culture is “a social, communal, and creative force of, by, and for Deaf people based on [ASL]”. The cornerstone of deaf culture is not necessarily being deaf, but the language that deaf people use. A child who grew up with a deaf family would certainly learn how to sign with them and be able to empathize with their condition to the point where they considered themselves ingrained with deaf culture. Consider Jewish culture. Any non-Jew can attend synagogue, go to a Bar Mitzvah or participate in a Seder. Despite not being ethnically or even religiously Jewish, anyone can participate in Jewish culture. Similarly, anyone can participate in deaf culture without being deaf themselves. Forcing their child to be deaf just to ensure that he is a part of their culture is short-sighted and irresponsible.
What this couple did is unethical and immoral. As sad as it is to admit, being deaf is a disability, and this disability will have consequences for their child. Because of the differences between ASL and English, deaf people who are literate in ASL may not be very literate in written English. The average deaf person reads at a fifth grade level. This is because ASL is not an equivalent language to English. To know both ASL and English is to be bilingual. While a deaf person could be very well versed in written English, this is not the norm. When put into hearing society, the deaf person can only be viewed as disadvantaged. Consequently, the deaf unemployment rate is higher than the general population’s unemployment rate. This is the sad reality that this couple has chosen for their son.
The deaf couple, even if they had good intentions, has done something wrong by engineering a deaf child. Forcing a disability on their child is inexcusable. If they had truly believed that their child would have liked to be a part of deaf culture, then they would have allowed him to make the choice for himself. Instead, they have made the decision and robbed an innocent child of his hearing.
Agree/disagree?
tits
