Thursday, November 4, 2010

Choosing a Disability

Sharon Duchesneau and Candace McCullough are a lesbian couple that also happen to be deaf.  In 2001, they decided that they wanted to have a baby.  Instead of going to a sperm bank, they approached a deaf friend for a donation of sperm.  What they were hoping was that their child would be deaf.  In December of that year, they had a baby boy, healthy in all respects, except that he had total hearing loss in one ear, and mostly deaf in the other ear.  The parents couldn't be more happy.

Sharon and Candace wanted their child to be deaf so that he could be part of the community/culture that they belong to, the deaf community.  Part of being fully accepted in the deaf community is being deaf.  This isn't to say that the hearing cannot participate in this community, but they would never really be apart of it in the same way that a deaf person is.

Did they do anything wrong?  It seems like that they brought into existence, purposely, a child that has a disability by most accounts.  However, the deaf community doesn't view deafness as a disability.  In fact, the very existence of the culture is under assault, or at least that's how many view it, because of cochlear implants that can help deaf children hear to a certain extent.  Usually these children are not allowed to learn sign language, so that they can more fully develop their hearing and speaking abilities.

Imagine that you had a child, but the child that you had was not a normal child. Your child gave off a strange pheromone that most people would find quite unattractive, with the exception of a few people who could not smell it.  The people who could not smell it also give off the same pheromone.  Your child finds solace and community within this subset of people, but you can't stand going to social gatherings with these people, because as much as you love your child, the aroma is overpowering.  You can tolerate your child's aroma, but only because there is one of her.  A group would simply be too much.  Would it sadden you to know that you will never be part of the community that your child finds significant solace in, that this community would be doing more to instill values and teaching her how to navigate through life than you as her parent would?  If so, then perhaps you have an understanding of why Candace and Sharon wanted a deaf child. 

This case has a lot of nuances to it.  Whats a disability?  Is designing a child like how Sharon and Candace did wrong?  Was there harm done to the child?

On the other hand, would there be any significant difference if Sharon and Candace, after their perfectly hearing baby was born, simply put the baby's crib next to the stereo and played incredibly loud music to ensure that it would lose their hearing?  (I think there would be.)


  1. Something like this should not be decided by the parents. If the child was simply born Deaf, then there would be nothing wrong with the Deaf parents rejoicing over such an event because it was merely the way things occurred. However, taking specific measures to increase the odds that their child is born in a specific way -- a way that would limit communication with billions of people who communicate using speech, a way that would limit job options, and in a way that would limit the child's ability to indulge in hobbies where the ability to hear is a pre-requisite for maximum enjoyment, like music -- is to intentionally rob numerous sources of potential enjoyment from the child, and for what exactly?

    The self satisfaction of the parents, is what. The motives here are grotesquely selfish. If they wanted their child to appreciate Deaf culture, then they could have taught him about the culture themselves, and taught him how to sign. This is exactly why so many hearing people raised by Deaf parents are often able to sign spectacularly and have a strong grasp of the culture. Having been raised by Deaf parents, the child finds him/herself immersed in the culture regardless of his/her ability to hear, and the child is often taught Sign Language from his/her parents. I specifically recall my American Sign Language professor who grew up in the same circumstances; today, she is still involved in Deaf culture, and obviously a lifetime of signing has given her plenty of skill at it. In that sense, one would be hard pressed to say that her ability to hear prevents her from "really" being a part of Deaf culture.

    This begs the question: What does it mean to "really" be a part of Deaf culture in the first place? Does it have to do with one's ability to understand the prejudices and hardships of Deaf people? A child of Deaf parents experiences this vicariously through the struggles of his/her Deaf parents. Is it a shared bond that forms from a collective understanding of what it means to have never heard anything? If that is the case, then individuals who become Deaf after they are born are also not "really" a part of the Deaf community either, despite being Deaf. I have read this idea before -- that is, that a Hearing person cannot fully integrate into Deaf culture -- but I have never understood the reasoning behind the claim.

    In any case, my point is that this child could have achieved an understanding of Deaf culture and even a fluency in Sign Language if he had been born with the ability to hear. Nothing would have stopped him from doing that, if his parents were willing to teach him. In essence, these parents could have given their child the best of the Deaf and Hearing cultures, or at the very least a choice in the matter, but they opted instead to act in their own interests rather than the interests of their child. Clearly, given the right environment, it is possible for a Hearing person with Deaf parents to be as much of a member of the Deaf community as a Deaf person, so what gives?

    The phermone example only stands to exemplify the selfish motives of the parents. To force a lifestyle onto one's child just so the parent does not feel "left out" is ridiculous.

    There is a clear difference between your final example and the actual event. The sheer amount of pain involved comes to mind instantly; destroying a baby's hearing with loud music causes intense pain for the child, but simply being born Deaf is not (as far as I can assume, anyway) painful at all. That aside, there is no ethical difference. In both cases the parents are taking steps to increase the chances of their child being born Deaf.

    That last portion about some imaginary parents intentionally ruining their child's hearing reminded me of this often misunderstood video:

  2. I think there is some merit to the idea that hearing people cannot be fully part of deaf culture. Not to say that they can't contribute or be somewhat a part of deaf culture, but it would be about the same as a white person being a part of black culture, or latino culture. they can go through the motions, but they really arn't part of it.

    With deaf culture its a little more easily seen, I think, than ethnic cultures. Its not just about the language, but about a lifestyle. The hearing person can answer the phone, have use for buying an ipod, etc. And ultimately, they can hear, and translate for the deaf. That makes them a bridge of cultures, but not really in the culture.

    On choosing the child's deafness. Sure, the child may not be able to communicate with many other people, but the child at the same time, CAN relate to a group that he couldn't before. Again, the deaf don't see being deaf as a disability or a bad thing. I think they might be wrong on this count, but I think their objection is really the pejorative nature of the term disability.

    I'm not sure how selfish this is of the parents part, since most parents have children for their own benefit as well as the child's benefit. We select mates that we find attractive, and in the case of artificial insemination, they select donors with qualities that their child has. Regardless if they were to pick a deaf person or not, they would be selecting traits. Why not select the traits that you value, over say other people, like blond hair and blue eyes?

  3. "With deaf culture its a little more easily seen, I think, than ethnic cultures. Its not just about the language, but about a lifestyle. The hearing person can answer the phone, have use for buying an ipod, etc. And ultimately, they can hear, and translate for the deaf. That makes them a bridge of cultures, but not really in the culture."

    I sat here trying to disagree with this statement for a really, really long time, but I simply cannot.

    However, even if my original premise (that a hearing child can integrate into deaf culture despite his ability to hear) is incorrect, the parents still did not have a good reason to do what they did. If the child was born hearing, then he could have been exposed to two cultures. Neither one would have really been entirely closed off to him. Even if he could never "really" be a member of the deaf culture, the influence that would inevitably come from growing up with deaf parents, absorbing the subtle mannerisms of the culture from a young age, learning the language from a young age, and mingling in the culture for the better part of his life would certainly allow him to come -very close- to "really" being a member of the culture. In addition, the child could be a member of the hearing culture as well, and enjoy the benefits that come with the ability to hear.

    Instead, the parents eliminated his ability to enjoy both cultures. Now, he can "really" become a member of deaf culture, but the hearing culture is effectively closed off to him. In that sense, he had more options as a hearing person. He had access to two cultures; he could have integrated fully into the hearing culture, and integrated "almost completely" into the deaf culture, but "almost" just wasn't good enough for his parents. So yes, the parents were selfish, and no, their reason for trying to ensure the deafness of their child is simply not good enough.

    It does not even matter that his parents think there is nothing wrong with being deaf, because their decision is affecting someone else entirely. If I were unable to see, and I believed that there was nothing wrong with being unable to see because there is an entire culture of people who cannot see, then I would keep that belief to myself. I would not take steps to ensure my son's inability to see, and without his consent at that. I would realize that as a seeing person, he could enjoy the benefits of seeing, and I would be able to introduce him to "blind culture" as well, thus exposing him to two cultures. Thus, he could enjoy both cultures at the expense of not -fully- integrating into my culture. I would not limit him to -just- my culture to suit my own needs, but that is exactly what these parents did.

    As for your final paragraph, traits like eye color and hair color are not the same thing as a sense, and the complete lack thereof. There is nothing wrong with picking a valued physical trait, but there is something wrong with picking the lack of a sensory ability that most people possess.