Deaf Like Me
With Liza Mundy
Washington Post Staff Writer
Monday, April 1, 2002; 1 p.m. EST
Candace McCullough and Sharon Duchesneau, a lesbian couple living in North Bethesda, are both deaf. Last year they purposely set out to have a deaf child, their second. Is that right? Are they being selfish? Are they inflicting too much hardship on the child? Or is deafness more an identity than an affliction anyway?
Liza Mundy, whose article "A World of Their Own" appeared in Sunday's Washington Post Magazine, was online Monday, April 1 at 1 p.m. EST, to field questions and comments about the article and the deaf community in general.
Mundy is a Washington Post Magazine staff writer and columnist.
A transcript follows.
Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.
Liza Mundy: Hello to all and thanks for joining the discussion.
Carneys Point, N.J.: I can well imagine what the arguments against these women will be. No doubt the phrase "it's a hearing world," will be repeated more than once in today's discussion. This statement has been used for hundreds of years as justification for making the deaf live as we would like them to. What does it mean? People who speak English are in the majority, too. Should English be forced on the rest of the world? Are German speaking peoples' lives less valid? It is true that the deaf must communicate with the hearing in everyday life. But if that communication is difficult is that a tragedy? No. The real and often overlooked tragedy is when communication is difficult within your own family. This couple have clear and fluent communication with their children. A blessing many deaf children in hearing families are denied. To be able have intimate communication with loved ones is far more important than speaking to strangers. Congratulations Sharon and Candy on your two healthy and beautiful children!
Liza Mundy: Thanks for your comment. In reporting and writing this piece I knew that it would prompt strong reactions in readers. I'm sure many people will disagree with you, that it's more important to communicate with family members than with strangers, but I think that in this couple's case, they probably would share that view. One of the things that really became clear to me while reporting the piece is how much deafness does affect familial relations. And I think communication is a central reason why the deaf women I profiled set out to have deaf children. On the other hand, they themselves allow that simply being deaf--that is--sharing deafness with family members doesn't automatically ensure open communication. I mean, families where everyone is deaf don't automatically get along and understand each other.
Leesburg, Va.: Mine is more of a comment. I am a child of college-educated deaf parents and I was so touched by this article! I was very happy to see an article about deaf families. Although I am hearing, I FULLY understand a deaf couple's desire to have deaf children. Do hearing people not want hearing children? Do black people not want black children? Do people with red hair not want red-headed children? Its time for society to wake up and view Deafness as a CULTURE, not a disability!
Liza Mundy: Thanks for your response. Again, I'm sure that some readers will agree and some will disagree with your view. One of the issues I hoped readers would think about, in reading the story, is: What qualities DO parents want their children to inherit, and why? In what ways do we want our children to resemble us, and why? For example, I was born and raised in a smaller town than the one where my kids are growing up: it wasn't a bad experience for me, but it's not one that I would take pains to create for them. Obviously, with every parent it's going to be different. There are plenty of parents out there who want their children to live lives much like their own: go to the same schools, etc. What's okay and what's not?
Somewhere, USA: How did you communicate with the deaf couple? E-mail, sign language, IM, interpreter, or voice?
Liza Mundy: I used email, and also the telephone relay service, but mostly I did in-person interviews with a sign language interpreter present. I myself would like to learn sign, but was sure I couldn't learn it fast enough to become fluent enough to report this article.
Washington, D.C.: Thank you for telling this very sad and twisted story. In the article, comparisons were made to parents seeking to have a black child, etc., but I think the best comparison would be mentally retarded parents seeking to have a mentally retarded child, perhaps in part because they feel they can be better parents to such a child. Can retarded children be happy, and lead fulfilling and productive lives? Sure. But what kind of parent intentionally puts obstacles in front of their children? This seems to simply be a case where the parents love themselves more than they love their children.
Liza Mundy: Yours is one of a number of similar comments. I'll post some of them and I'm sure readers will respond. One thing that strikes me is how many people, in trying to figure out how to feel about this situation, search for analogies. But in fact, many disabilities are not analogous. Being deaf (as I'm sure deaf readers will point out) is not analogous to being mentally retarded. Or even to being blind. As one deaf woman put it: being blind cuts you off from things; being deaf cuts you off from people. I think that's a crucial distinction. Being deaf cuts you off from human communication, which is why Helen Keller described it as more difficult than being blind. But when deaf people who sign are together, it's almost as if they aren't deaf. Suddenly, communication is possible. Communication depends on there being other deaf people, or other signers. To me, that's one explanation for why deaf people would want to have a deaf child. It preserves the community, and that way, preserves communication. It gives you other people to talk to--a profound human need.
Cleveland Park: Hi Liza,
I’ve enjoyed following your column in the Sunday magazine, and found yesterday’s article fascinating but disturbing. I tried hard to take an objective view of Candy and Sharon’s decisions to try to bring two deaf children into the world. Of course, the children are beautiful. But I couldn’t help feeling that a major motivation in Sharon and Candy's quest to have deaf biological children was to undo the very real injustices and mistakes that occurred in their own upbringing, by "doing it over right" this time. It seems unethical, however, that any child (and especially one designed to have a disability) would be conceived for the purpose of righting wrongs suffered in the past by a parent. Did the women give any consideration to adopting two deaf or otherwise disabled children, so many of whom are overlooked in the adoption system? This would seem especially to have made sense since Candy is not biologically related to Sharon’s children and must go through the adoption process, anyway. I also wanted to comment on your explanation of their position that "if they are deaf and have a hearing child, that child will move in a world where the women cannot fully follow." A hearing child in a deaf family would obviously become fluent in sign, so communication within the family would presumably be facilitated. And being mother to a teenager and two young adults, I can testify to the fact that any child, in the course of healthy development, moves into worlds where her parents cannot (and would not want to) fully follow. This is as it should be!
Liza Mundy: Thanks for this very thoughtful reply. You know, I put lots of questions to Sharon and Candy, but the adoption question is not one of them. Obviously there are lots of couples who want, if possible, to go through the birth process and have children who are genetically related, and who therefore go through the arduous fertility process, ratherr than adopting. I would suspect that Candy and Sharon are much like any couple who wishes to conceive, if possible, rather than adopt. But it's a good question.
Centreville, Va.: Do Sharon and Candy wonder whether their children, as they grow up, will understand why they were "engineered" (for lack of a better term) to be deaf? Do they worry whether their kids will hold that against them? Both Sharon and Candy seem very confident and well-adjusted, but of course their is no guarantee that their children will be as accepting of their deafness.
Liza Mundy: I did raise this with them; they are very open with their daughter, Jehanne, about her conception, and obviously thanks in part to this article their own children will have a pretty darn comprehensive record of the thoughts and motivations that went into their birth--much more than the rest of us do. I think that Sharon and Candy both believe that being open and accessible and emotionally intelligent will enable them to deal with whatever questions or issues their children have. Only time will tell, of course, how the children will react or what questions they will have. Personally, though, I kept getting back to the fact that for both Jehanne and Gauvin, there isn't an alternate existence in which they would get to be hearing. They can either exist deaf, or--if, say, Sharon had used a hearing donor--different children would exist entirely.
Alexandria, Va.: I would venture to say that this child, as well as their daughter Jehanne, will encounter more difficulty in this world growing up as the child of two lesbians than as the (nearly) deaf child of two deaf parents. Was it a conscious decision on your part to completely gloss over this aspect?
Liza Mundy: That's an interesting perspective. I don't know whether most deaf and/or gay people will agree with you, that it's "harder" to be the child of lesbians, than to be deaf. Anyway, I didn't gloss it over. It just wasn't the focus of the article. There were plenty of other issues to deal with. But there were some other writers with questions about sexual orientation, and I will try to post those.
Arlington, Va.: I have been deaf since birth, and I rely on lip reading/speaking to communicate. I do not know sign language. I think it's unfortunate that the parents decided to do what they did, because their child's world is going to be so much more limited than those who speak. When I go out to restaurants with my deaf friends, I'm the one who has to order for all of them, because they can't speak for themselves. I love being able to speak up in classes at a regular university, without having to rely on an interpreter to speak for me. I can socialize and hang out with my work colleagues without the need of an interpreter, and can go out with them whenever I want (without having to go through the hassles of finding an interpreter who is available that evening.) I love the freedom, the choices that my parents gave me. Thank god I can speak and lip read -- because in my world, the sky IS the limit. I feel sorry for Guavin. I hope he won't resent his parents for not giving him the choice -- to sign and/or to speak. Why not teach him both, and let him choose later? -- ratherr than being stuck with only one option.
Liza Mundy: A useful perspective. I think the main thing Sharon and Candy want is to ground their children in sign FIRST, and then speaking and lip-reading will come later. They do practice lip-reading with Jehanne, but in a kind of joking, off hand way. It's true that it's not a priority, and it's also true that Sharons ability to speak and lip-read does enable her to be the "interpreter" for the couple, in conversations with hearing people.
Alexandria, Va.: In response to the Leesburg, VA, person who views deafness as a culture, not a disability, does the mean deafness should be taken out of the Americans with Disabilities Act? Where do you draw the line?
Liza Mundy: Well, I do think that's one logical outcome of the Deaf movement. And it's not one that's really been dealt with, that I've encountered. I'd be interested to know what deaf readers think.
Alexandria, Va.: You provided a pronunciation guide for baby Gauvin's name, but how do you pronounce Jehanne's name? I spent the whole article trying to figure that out.
Liza Mundy: Jay-han. Sorry. I thought that one would be clear.
Alexandria, Va.: I am hearing but I learned sign-language as a teenager, and I have to say this article angered me. Yes, it is natural and normal for parents to want their children to be like them, but I have to take issue with imposing deafness on a child. The women in the article obviously had very troublesome times growing up deaf, yet they want a deaf child because it's convenient for their family in communication and schooling.
How would people react if this was a story about parents with diabetes wanting a diabetic child? I suppose it would make meal planning easier, but think about the variety of health and societal issues?
The women seemed to be proud that they offered their daughter a choice about trying a hearing aid or not, but they didn't give her a choice of allowing her to ever have a chance to hear. Regardless of whether you feel being deaf is a disability or a culture, the fact is that we all recognize that people are intended to be hearing... that's why we all have ears. Restricting your child's perception of the world is a horrible thing for a parent to do to a child.
Liza Mundy: I'll just post this response, also a valid response. But it's interesting to me, that the analogies continue. I'm still not sure they're entirely legitimate.
Washington, D.C.: I understand all these arguments about preserving the vitality of the deaf community, but why could these women not have had a hearing child and still raised him as a fluent signer, able to communicate BOTH with the deaf community and the hearing world? Any hearing child raised by two deaf parents would still be an active, sensitive participant in the deaf community, would he not?
Liza Mundy: I think that's a good question and one that I probably should have touched upon. Both Candy and Sharon did express the view that they would love a hearing child and of course would teach him/her to sign. It is my superficial impression that in many families where there are hearing children of deaf parents, some of the children turn out to be better signers than others. There is a whole identity movement, you know, for hearing children of deaf adults; they are called CODA, or children of deaf adults, and they have their "issues," their own meetings and support groups. This was another whole thing that I could have gotten into, with unlimited space. But I do think it's a valid question; it is my experience, again limited, that many sign interpreters ARE the hearing children of deaf adults, and that that relationship can work fine. But the thing is, when I would say to Candy and Sharon: "Why not have a hearing child?" the natural response would be, "Well, why not have a deaf child?" I'd be interested to hear comments from readers.
New York, N.Y.: In response to the hearing teenager's anger about imposing the deafness on the child, it is quite natural for any hearing to feel that way. However, when it comes to deaf people like us, we STILL to this day, don't see why it's so wrong being deaf. I've had an incredible life growing up in a hearing family who don't sign, and yet, I aim for my own children to be deaf because of the beautiful sounds they will see through their eyes. And it is really not as horrible as you may think it is.
Liza Mundy: I'll just post this reply.
Vienna,VA: Ms. Mundy,
In your article you wrote
"And yet, while deafness may be a culture,..."
Are you not sure deafness is a medical disability? If you or your children (if you have any) were deaf would you shrug it off saying it's just a cultural identity?
What those women did is harmful by trying to make their child deaf and I think your article promotes their inappropriate behavior. I was appalled at what I was reading. I am 41 years old and I never thought I would hear such shocking things. If I were Gauvin and if I turned out to be deaf even though I would love my mother in general I would hate her for doing everything in her power so I would be deaf.
Is blindness also a cultural identity? How about not having limbs? Is that also a cultural identity?
Those women should listen to their hearts ratherr than being selfish and making Gauvin share their difficulties because of deafness.
Liza Mundy: I wasn't promoting anything in writing my article. I was simply writing about a situation that exists.
Personally, I think it would be reasonable to argue that deafness is both a culture and a medical disability. I don't see why it has to be one or the other.
Leesburg, Va.: I think one obvious fact that many people participating in the discussion today are overlooking is that Sharon and Candy did not and cannot control whether or not their children are deaf. Having deaf parents does not ENSURE that their offspring will be deaf. I have two deaf parents. I am hearing. So are my two siblings. So their children were not "engineered" as one person put it... nor were they "designed to have a disability."
Liza Mundy: I'll just post this one as well.
Falls Church, Va.: I don't condemn Sharon and Candy for their choices, but I couldn't help but feeling that their desire to have deaf children was so that, some time down the road when their children were older, they would not feel the same rejection from their children that they have felt from strangers and family members alike all their lives. I can understand this fear, but I cannot agree that they have taken the correct strategy to avoid it.
Can a hearing child from a deaf family not be raised culturally deaf, just as deaf children from hearing families are often raised as "culturally hearing" (which I believe is a misnomer)? Would not that child have special advantages in both "worlds?" What would be so wrong about that?
Liza Mundy: I'll post this one as well, as reference you to the reply above. I do think that it's possible for hearing children to participate in deaf culture, but not, I guess, guaranteed. Maybe there will be some "CODA" comments.
New York, N.Y.: This is not a question. I wanted to take the opportunity to applaud Candy and Sharon for their achievements. They have come a long way to build a family and it is with hope that I can do the same thing they did.
Liza Mundy: I'll just post this one as well.
Gallaudet: At Gallaudet University, there are two deaf fraternities and sororities. They often socialized and intermarried. Many have deaf parents and deaf brothers/sisters. They way they try to have more of a deaf generations is fascinating. However, being cut off from the hearing world by segregating themselves and working at deaf schools is not that good sometimes.
Liza Mundy: Interesting observation. Sort of like being in a small town, except that when you are deaf, I think, it's harder to move away.
Takoma Park, Md.: I want to congratulate you on the rare presentation of the deaf community as having its own standards of normalcy. Also, you did a fine job of not shifting attention to the sexual orientation of the couple. My question is: What was your perception of the deaf community prior to writing this article? How did it change during the writing process?
Liza Mundy: Thanks. I had done some reporting at Gallaudet a number of years back, writing about some of the ideological debates on campus in the wake of the "deaf president now" movement and the awakening of deaf pride. As I said in the piece, I really think that what Sharon and Candy is doing is the logical outcome of the deaf pride movement, and I think that bears thinking about. What changed for me, in writing this piece, is understanding how deeply and profoundly deafness affects families and family life. Of course, it doesn't affect all families in the same way, but for a deaf child, not being able to fully communicate with other family members can be a profoundly difficulty situation. At the same time, I have talked to hearing parents of deaf children, who worry that their children are being "stolen,' if you will, by the deaf community. It's really almost two different families; one's own family, and the larger deaf family.
Gallaudet University: I work at Gallaudet University, and I see the results of being a part of a culture within a culture (great social life, a feeling of belonging, etc.). I also see the abominably low reading skills and language levels of our students. By not giving their children EVERY advantage (speech therapy, hearing aids, etc.) they are limiting their children's futures. Unfortunately, a deaf person who cannot speak still won't get as far as a deaf person who can. Making a hearing aid a child's decision ratherr than a parental decision is abrogating the duties of a parent. It's just fact that the longer you wait, the less benefit there will be. I found this to be a very sad article, indeed.
Liza Mundy: I'll post this one, too. I think it's fair to say that Sharon and Candy believe in sign as the basis for learning; fluent in sign first, then fluent in English. Their household is full of books, and Jehanne is reading well for her age. IT's basically a bilingual household, where she is being raised with one language for talking ,another for reading and writing. I am no expert in bilingualism; also, I'm aware of the reading problems you talk about and am not expert enough to know the reasons. In this household, all I can say is that Jehanne's acquisition of ASL and written English seem to be occuring simultaneously.
Rochester, N.Y.: As a future health care professional with an interest in health care delivery to deaf and hard-of-hearing patients, I wanted to respond to the comment about the ADA and the Deaf movement. In my opinion, it is important that deafness be included in the ADA for purposes of health care delivery and legal representation, since these are situations in which meaningful communication with hearing service providers is a basic right and interpreters must be provided if requested in advance.
Liza Mundy: I'll post this one, too.
Washington, D.C.: I thought the article was well-written. As a deaf person, I wonder how did you as a hearing person feel working on this article?
Liza Mundy: Thanks. As a hearing person, I found it fascinating and I was grateful to Sharon and Candy for opening up their lives. I have found, in general, that in the deaf community there is sometimes initial suspicion of hearing people, that a hearing person will find it impossible to fully understand the deaf experience. I think this is natural--like being in a country where everybody else is speaking a different language. And possible it is true that a hearing person can never fully understand. I do find that the dangers of misunderstanding are great; it takes time to learn to work thorough an interpreter, time to know that it's okay to ask someone to repeat; time to learn the small items of etiquette that characterized written communication among the deaf, such as writing "smile" when you're making a joke. But in general, as I said, I find it fascinating to report and write about deaf issues and was very grateful to Sharon and Candy for baring their lives, esp. given the controversy their choice has engendered.
Fairfax, Va.: Sharon and Candy speak of the desire to raise children in their "community" and "culture," and so deliberately attempted to conceive and raise deaf children. You write about the deaf culture but almost painstakingly avoid the whole issue of the other community they live in -- the gay community. Did you ask them if they hope that their children turn out to be gay when they go through adolescence? If you did and they answered "yes" then you have another article to write, if "no" then doesn't that call into question their reasoning for wanting Deaf children in the first place -- to have children that exist and remain in their culture? And if you didn't ask that question, why not? You can't credibly say that that question didn't occur to you or your editor.
Liza Mundy: I did put the question to Sharon and Candy, whether it was an issue to them, the eventual orientation of their children. They say it's not. Gay or straight--okay, either way. Again, I don't think the situations are the same, since deafness involves the communication issues already mentioned.
Alexandria, Va.: By not fitting Gauvin with a hearing aid now, to make use of his limited hearing, they doom him to never be able to use it. The brain's pathways are being established now, in infancy, and if he doesn't learn how to associate sound with meaning, he will not be able to do this later. Sound, to the extent he hears anything, will just be meaningless noise. These parents are being extremely cruel to their children.
Liza Mundy: I'm not an expert on this; you may be right; when I was present at Gauvin's hearing test I remember thinking how profoundly difficult it would have been for me, as a parent, to know what the right thing would be to do, were I to learn that my own infant was deaf. I mean, I think it would be crucial for a hearing parent to start learning sign immediately, because sign is going to be the easiest way for a deaf child, even one with some residual hearing, to acquire language. Would a hearing aid interfere with the acquisition of sign? I don't know. I don't know what I'd do. Probably, since I'm hearing, I'd do the hearing aid and try to learn sign. Would it help? I don't know. I don't even know if there's a right answer. But as you know, for Sharon and Candy it wasn't even a question. They feel that imposing a hearing aid is itself cruel. You feel that denying it is cruel. I don't know if the debate will ever be resolved.
Bethesda, Md.: Thanks for a thoughtful, provocative essay.
It's often said that the average deaf adult in the U.S. -- and by deaf, I mean those whose chief language is ASL -- reads English at the 4th grade level. Having worked in a related field and seen many publications and correspondence from deaf adults, that statistic rings true. It's also not surprising, since ASL has no written tradition, and no cognates with English. A native ASL speaker would naturally experience extraordinary difficulties learning to read English.
Thus my concern is that this couple may be intentionally depriving their children of the experience of, say, reading James Joyce AND of succeeding academically in any field that requires super-literacy (law or academia, for example). The women themselves are clearly intelligent and well read, but English was, in both cases, their first language, with ASL added later. Is literacy among their primary concerns for their children? It is, after all, one of the fundamental joys and necessities of life.
Liza Mundy: Literacy is a prime goal for them; as I mentioned, the household is full of books and the kids will basically grow up bilingual. I am also aware of the statistics you cite, that many deaf children and adults have a low literacy level. Again, this is an issue that's hotly debated. As I understand it, many schools, even deaf schools, once avoided sign because it was feared it would interfere with learning English, which seems your view. However, there are many now who believe that sign should come first, and be used to teach English. Maybe in a number of years, it will become clear whether and how this helps with the literacy problem.
Liza Mundy: Times up; thanks to everybody who wrote in.
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