Deaf Culture

The posts below are selected and edited from a Metafilter thread started on 3 April 2002 by dwivian, who wrote that "Deaf culture has taken an interesting twist. ... What do we make of people that intend to bring about birth defects?" Comments by other people than myself are highlighted in blue. (The thread has a lot more than this in it, so go and have a look.)

 

One of the extraordinary things about a subsection of deaf people is that they have turned deaf culture into a cult. This is just another form of fanaticism, an inability to come to terms with the real world. Only if they stay within the deaf culture can they say that deafness isn't a handicap. To choose that kind of limitation for yourself is one thing, to choose it for unborn children should subject you to the same laws that protect children (or try to) from parents who do drugs on a regular basis. ¶ posted by gordian knot

 

Saying that one can accept the idea of the existence of deaf culture but that one would never trade a functioning sense for a culture is to sell culture very short indeed. If someone offered me the choice between becoming deaf or somehow having my 'cultural essence' eradicated (what would that take? A lobotomy?), I would reluctantly choose the former—and believe me, I don't want to be deaf.

To paraphrase one of the posts above (and I'm not picking on you, gordian knot, just choosing your post as an example of the majority view in this thread), how would we feel if we read this:

One of the extraordinary things about a subsection of [American] people is that they have turned [American] culture into a cult. This is just another form of fanaticism, an inability to come to terms with the real world. Only if they stay within the [American] culture can they say that [American]ness isn't a handicap. To choose that kind of limitation for yourself is one thing, to choose it for unborn children should subject you to the same laws that protect children (or try to) from parents who do drugs on a regular basis.

We'd think it ridiculous. Except that some of it isn't so ridiculous... in fact, only the references to cults and fanaticism and the last line calling for legal protection now strike me as ridiculous... which seems to be annathea's point in making the comparison with black culture. Insert 'black' for 'American' in the paragraph above, and see how it reads.

Many of the arguments here seem equivalent to many Americans' blinking incomprehension that someone might actually not want to be American. "What do you mean, Chinese people are proud to be Chinese—don't they realise how disadvantaged they are compared to us?" Yes, it's hard for those of us in hearing culture to know what it's like to be part of deaf culture, but it's hard for me to know what it's like to be Swedish. Or American, for that matter.

Thinking about deafness makes hearing people think about how they (we, with apologies to any deaf people reading) would feel being deaf, but we can only imagine what it's like to become deaf (pretty bad, we imagine, when you've been brought up hearing)—not what it's like to be born and raised in deaf culture (and it's also possible to be deaf from childhood and not be part of deaf culture, as annathea points out).

We're thinking 'no music, no bird song', while deaf-cultured people are thinking 'no entirely different way of looking at the world shaped by sign language, deafness and deaf culture'.

Imagine you're part of a minority culture living among a majority culture, and knowing that any child you have is likely to be part of that majority culture, not your culture—speaking their language as their native tongue, and thinking like their people and not your people. If you're an immigrant with young children, you may not have to imagine too hard. Now imagine that you can reduce that likelihood by having children with another person from your own culture. Would you?

Some of us wouldn't, just as some immigrants like the fact that their kids are growing up American (or British, or whatever). But others would try to pass their culture on to their kids in whatever way they can, because they think their culture matters.

I'm not saying I would make the same choices as these women—and I'm not saying that I wouldn't. Because when it comes down to it, I don't know what it's like to be in their shoes, and there's only so far imagination and empathy can take me. And given that, I certainly wouldn't call for them to be subjected to punitive legal measures simply for selecting a mate from within their own culture.

Yes, it's hard to get ahead in a predominantly hearing culture when you're deaf. But it's hard to get ahead in a white culture when you're black, male culture when you're female, and so on. And yes, a life without music is missing something—so while we're at it, let's ban those fundamentalists churches that frown on singing and dancing. Let's also insist that every child learn every language of the world, and undergo gender realignment at some point so that they can feel what it's like to be the opposite sex. Or... let's not.

Willfully deafening a living, breathing, hearing child would be reprehensible, but this is not that, any more than wishing for a boy is the equivalent of female infanticide. Extrapolation is all well and good, but extrapolating a poke in the eye and calling it murder isn't.

(Oliver Sacks's Seeing Voices, mentioned in the article, is an excellent book on these issues.)

 

I still don't buy the comparison. The basis of most cultures is, yes, being different from the mainstream, or being different from the neighbors, or being different from the barbarians on the other side of the river. But deaf culture is based on being physically unable to do something that healthy human beings are able to do, and having to compensate for it. However vibrant and fascinating deaf culture may be, they still can't hear anything. ... A child of immigrants still has the choice to assimilate into mainstream culture, or not, as he pleases. But this child isn't going to have a choice. ¶ posted by ook

A child absorbs whatever culture(s) they're brought up in, those being a complex mix of family culture, peer-group culture, minority culture, the wider culture, and so on. They don't—we didn't—have much choice in the matter, any more than we can choose not to learn our native tongue—by the time you're aware that you can choose, you've already learnt it.

While I can imagine circumstances in which a child might resent being born deaf, I don't see how that's so vastly different from resenting being born imperfect in other ways. I can also imagine a child moving beyond that resentment and accepting themselves for what they are: because if they weren't deaf, they wouldn't be them, they would be someone else. It's like wishing you had a different father: if you did, you wouldn't exist—some other person would, the child of your mother and this different father; it wouldn't be you.

I'm a skinny unathletic type with various human failings, but I don't resent my parents for my genetic make-up; why on earth should I? They—my parents and my genes—enabled me to exist; a different roll of the dice, and someone quite different from me would have existed (does exist; my brother). And I can't somehow untangle myself and say 'Well, if I was athletic I would have been just the same as I am now except I could run faster'; being athletic would have fundamentally changed my childhood, and could have changed the whole course of my life. It would be the same for a deaf child. They would have more cause to feel resentful if their upbringing sucked, but by the sounds of it their family environment will be fine.

 

I wonder how the child is going to feel when he finds out that his parents did not, according to this article, make any effort to use or nurture the limited hearing he was born with. ¶ posted by groundhog

That's a reasonable point (and separate from the whole 'should he have been conceived this way' debate), but the article suggests that his limited hearing is very limited, in which case it's questionable how much value he'd get from it anyway. And that value has to be weighed against the effort needed to learn how to make use of it (effort that therefore won't be directed in other more useful ways), and the pain he'll feel when it deteriorates—and one of his parents knows what that's like, because she lived through it herself. It reads to me like the parents are thinking deeply about these things, and are doing what they honestly believe is in his best interests.

 

The distinction I'm trying to draw [is] the possibility of change. One can grow up, move to another city or country, and reject the culture you were brought up in: it happens all the time. But one can't reject being deaf. ... Your points about genetic makeup: yes, but nobody deliberately tried to skew your genetics in a particular direction. If they had, would you feel differently? What if (to take an absurd example) there were a vibrant, compelling culture based around having no legs, and these parents had done their best to skew the odds in favor of their child being born without legs? Would it still be their choice? ... I just think there's a fundamental difference between being born skinny and unathletic, and being born deaf. ... This is going to become more and more of an issue as our ability to do genetic screening—and eventually modification—increases: I'm sure most of us would agree that it'd be a Good Thing to screen out life-threatening defects by any means possible, and that likewise we'd all agree that it'd be Bad to, say, screen out all non-aryan features. In between is a gaping wide grey area... ¶ posted by ook

Would I feel differently? I have no idea. If one's parents were attracted to each other because of certain physical and mental features they each had, does that mean they were trying to 'skew your genetics'? Is it okay if it's unconscious, not okay if it's conscious?

I'm not sure that different disabilities can be readily interchanged in this argument. Someone raised the issue of blindness above, but it's a different situation... I vaguely remember Sacks drawing comparisons between deaf culture and the lack of a comparable blind culture in Seeing Voices (it's a while since I read the book, so I can't swear to it).

But if there were a 'vibrant, compelling culture' based around any particular human trait, then I'd argue that having some parents strive for their children to share that trait and hence that culture would be understandable, given the importance of culture to human beings.

Step back for a moment and think about what some have argued for here. We have two consenting adults—one of the women, and the father/donor—both consciously and willingly conceiving a child together, without any scientific Gattaca-type contrivances beyond in vitro fertilisation; indeed, the child might even have been conceived naturally. And some people here are arguing that these two rational, consenting adults should have been prevented by force of law from conceiving a child together. Step back and think about the implications of such a law, and then let's start talking about 1984.

 

Unconscious selection implies love and attraction, conscious selection implies breeding and eugenics. I'm not saying that one is always good and the other is in all situations evil, and I'm definitely not saying that there is or should be any way to legislate it. But yeah, to me, the intent is pretty important here. ... It's well and good to say "that's their culture, they can do what they want." But some cultures engage in practices I find abhorrent, however socially relevant and important they may be within the culture. ... To me the method they used doesn't matter in the slightest. High-tech gene splicing, prayer, or good old-fashioned selective breeding, makes no difference. ... If they had genesplicing that would prevent hearing from developing with 100% effectiveness, would that still be OK? What if there were some "natural", non-violent, non-science-fictiony but still 100% effective method? What, in your opinion, makes it acceptable for these people to make this choice: that they used a 'natural' method, that it might not succeed, or that it's nobody's business but theirs? Or all (or none) of the above? ¶ posted by ook

I'm not sure where I'd draw the line, either. But it's definitely worth thinking about. I accept that intent can make a difference—the difference between murder and manslaughter, for example—but then is intentionally bringing a (particular kind of) life into the world as reprehensible as intentionally ending one? Why do we even have to draw a line? Do that, and we could end up lumping these deaf kids in with the Boys from Brazil.

"'That's their culture, they can do what they want.'" Not something I'd say in any absolute sense: I'd say that people should be allowed to do what they want (whether culturally-determined or not) within the constraints of national and international law and universal human rights; what those might be is a debate for another day, but I'd certainly expect that the right to choose your own mate is well within their boundaries.

That can lead to 'breeding', I guess, but then 'twas ever thus—look at the royal families of Europe. I find eugenics distasteful too, but this case is about two people's personal choices about their own reproductive activity: they're not advocating that all deaf people do as they do, or that non-deaf people be prevented from breeding, or any of the other traits of eugenics movements.

"To me the method they used doesn't matter in the slightest." Personally, I'd draw the line at mad scientists creating races of mutant octopus children by staple-gunning tentacles to new-born genetically-modified monkeys. But maybe that's just me.

There are always grey areas... but then human beings have been modifying themselves from their 'natural' state in so many ways for so long that it does seem a bit late to worry too much about the 'how' rather than the 'why'.

"Let's say the method they chose increased the chance of deafness by 25%, which you consider OK. (Not trying to put words in your mouth, and no idea whether that figure is even vaguely correct. But bear with me.)" I'll bear with you, but point out that my considering it okay or not should have no bearing on the matter. All I'm saying is that in most Western societies it's considered okay for people to be allowed to choose their mate. And for what it's worth, that's okay by me.

"And the method they didn't choose—deafening a hearing child, 100% effectiveness—nobody would consider OK. (But—devil's advocate, for a moment—why not, if deafness isn't a handicap? Because it's an injury, and not a 'natural' development for the child?)"

(a) Some handicaps are defined as such only in relation to particular cultural values. For example, if I cannot read, then to most intents and purposes I am handicapped in Western culture—but not in some other cultures. Deafness is obviously defined as a handicap by hearing culture, but by many deaf people—by deaf culture—it isn't. In this case, we hearing people are being confronted by a different cultural value system, and some of us don't like it. Well, unless we can demonstrate that this case contravenes the law of the land, human rights etc., we just have to live with it. That doesn't mean that one personally has to accept it. But, personally, in this specific case, I do.

(b) Wilfully deafening a hearing child (or blinding, or whatever form of crippling) would be seen as an assault against another human being—perhaps not in some extremely hypothetical Fundamentalist Deaf society, but that's not what we're dealing with in this case—and in Western societies I imagine that this would contravene the law.

But the selective breeding described here isn't an assault against a child, because no child exists yet: there's only a hypothetical child. You can't assault a gleam in someone's eye.

This is why gene-splicing would be a grey area: you can only gene-splice an embryo that already exists. And for some people, as the abortion debate shows us, even an embryo is considered a fully-fledged human worthy of the full protection of the law. Others believe that we become fully human later than that, so might consider gene-splicing before such point to be okay. Forgive me for not wanting to get into that whole debate just now.

"What, in your opinion, makes it acceptable for these people to make this choice: that they used a 'natural' method, that it might not succeed, or that it's nobody's business but theirs? Or all (or none) of the above?"

1. That their actions are not harming an actual, living human being. The question of 'harm', however we define it from whatever cultural stand-point, in this case only applies to some hypothetical human being who does not exist yet. That it might not succeed comes into it: if they had a 100% successful method of conceiving and bringing to term a deaf child, then the hypothetical human being would no longer be hypothetical, they would be a certainty. Since no pregnancy is 100% guaranteed to produce a child, this 'certainty' is itself hypothetical; but, assuming for the sake of argument that certain means certain, then...

2. For me to consider their actions unacceptable, I would have to believe that being deaf within a deaf family equates to 'harm' to that child in every case—which I don't. It possibly may in some cases, I concede, but on the evidence I've seen so far I don't believe it does in every case. But even if I did, my personal beliefs shouldn't be the issue. If society shared those beliefs, and legislated accordingly, then they would have a problem. But since they're breaking no law, the question of who they have a child with should be nobody's business but theirs. They've made it our business by letting themselves be interviewed about it, but they need not have.

 

Lacking hearing is not a culture, it is a fact of biology. ¶ posted by NortonDC

No one's saying that 'lacking hearing is a culture'; rather that deaf culture has grown up among people who share the experience of deafness. It's deaf culture that the parents want for their child. That's the whole point.

No, that's a completely bogus misrepresentation of the situation. They did not practice dysgenics to brew up a bouncing baby signer, they did it to keep their child as limited as they are because they are to afraid to face the larger world. For a parent to inflict a major sensory defect on their child because they fear it could surpass them and leave them behind is one of the most despicable acts imaginable. ... Race is not a defect. Lacking hearing is a major sensory defect.¶ posted by NortonDC

Okay, so lacking hearing is a lack, but I lack a womb and therefore can't share the child-bearing experiences of half the population of the planet; does that make me 'defective'? What one considers 'defective' in terms of being a functioning human being is a subjective judgement, not some absolute objective truth; from nature's point of view, we're just a bag of cohabiting cells. If evolution came up with a variant human being with some extra super-sense that we can't imagine or understand, those variant humans would consider us defective; would that make us so?

As for the race analogies, the point is the cultures surrounding different races, not the races themselves—there's a big difference. And some here are arguing—I'm one of them, obviously—that in some cases one's culture can be considered more important than the possession of a particular sense. Take away my hearing, and I will still function; take away my cultural identity, and I will no longer be me. Reducing this all to simple biology and absolute statements about 'hearing Good, not hearing Bad' ignores much of what makes us human. So do comments about 'brewing up a bouncing baby signer'; sign is a language, and many would argue that language is what makes us human (in the sense of being more than our biology, and different from other animals); and the specific language that we speak as our native tongue is an integral part of our identity. If you don't believe that, go to Cardiff and try telling the nearest Welsh-speaker that they shouldn't attempt to brew up a 'bouncing baby Welsh-speaker', and see how far you get.

And as for your comments about these women being 'despicable' practicers of 'dysgenics': these women are choosing a mate, not practicing eugenics. Yes, it is obviously an example of 'selective breeding'. But eugenics was—is—about more than selective breeding (which humans have been practicing forever, or else we would all be coffee-coloured), it's also about actively preventing supposedly 'inferior' types from breeding—for example, by forced sterilisation, or prohibiting certain forms of marriage.

That's something I find despicable, and that's why I think these women should be allowed to breed with whichever consenting adult they see fit. (Apart from members of their immediate family.)

 

"Take away my hearing, and I will still function; take away my cultural identity, and I will no longer be me." It's good to see you acknowledge that sensory defects do not define culture. Now I'm just wondering how long it will take for that understanding to enlighten the rest of your thinking. ... Yes, sign is a language. No, deaf is not. Part of what you are missing is that whatever child they raise will be a signer, hearing or not. ... I called their acts despicable. Good people can do horrific things. This may be a prime example. ... "These women should be allowed to breed with whichever consenting adult they see fit... [a]part from members of their immediate family." Gee, why? Perhaps because of the increased risk of birth defects? Wake up! That is exactly what we are talking about. These women are aiming to produce a child with profound birth defects. And, yes, that is despicable. ¶ posted by NortonDC

'Sensory defects do not define culture'? Sure, and yeast doesn't define bread. But it helps make certain kinds of it.

"Now I'm just wondering how long it will take for that understanding to enlighten the rest of your thinking." Since I don't share your understanding, for example your intractable definition of 'defect' in this instance, it will be some time before I achieve that particular form of enlightenment.

"Yes, sign is a language. No, deaf is not. Part of what you are missing is that whatever child they raise will be a signer, hearing or not." Why do you presume that I am 'missing' this? I just haven't chosen to explore that angle.

"I called their acts despicable. Good people can do horrific things." Okay, fair distinction.

"Gee, why? Perhaps because of the increased risk of birth defects?" Not particularly. More because I've been raised in a culture with strong taboos against incest, to the point where even the thought of genetically-unrelated adoptive relatives having kids together is unsettling. The increased risk of birth defects in any particular case, as another thread is discussing, is no worse in some kinds of relationships that we define as 'incestuous' than in some non-incestuous relationships that we consider okay. But for a population as a whole, the increased risks of allowing certain types of pairings may be considered too great, which is some explanation for the incest taboo. There are many more siblings and other close relatives around than there are deaf people, so the incest taboo makes a big difference in absolute terms in reducing overall numbers of birth defects, whereas prohibiting other less-likely kinds of pairings wouldn't. The cultural taboos and consequent laws against incest make sense for the group, but not necessarily as much sense for individuals: cumulative probability versus one-off probability.

Some people might think that society's desire to keep total numbers of birth defects below a certain level (five percent of the population, say) requires intolerance of any activity that might lead to birth defects. That way lies mass genetic screening. But there's no contradiction between keeping numbers of birth defects low in a whole population and allowing couplings with a higher risk of birth defects in small minorities in that population. It's straight probability and statistics. If a tiny percentage of the population has twice or twenty times the chance of winning the lottery of everybody else, it doesn't mean we're about to be overrun by millionaires. But allowing incest would be different: the majority of people in society would have the potential for an incestuous relationship, and the risks to society of greater numbers of birth defects than it can comfortably cope with would be far greater.

"These women are aiming to produce a child with profound birth defects." That is indeed 'exactly what we are talking about': you believe this is what they are doing; they don't. Since you don't acknowledge that the concept of 'defectiveness' is culturally-defined, and that the problems some people have with this case stems from conflicting cultural conceptions of what makes a happy, functioning human being, the argument is going nowhere fast.

 

Your harping on language and culture only makes sense when operating under the delusion that ASL is available only to those with broken hearing. ... You seem to be opposed to screening in general, but supporting it when used to select for birth defects. That is mind-bogglingly perverse. ... Culture does not determine that they have a sensory defect. Their hearing is defective. They endeavored to produce another generation born with defective hearing, born with birth defects. These are incontrovertable facts. [It's despicable] because it is a parent trying to limit their child, because it is trying to breed for birth defects, and because it is exclusionary thinking distilled into life-long biology. For starters. ¶ posted by NortonDC

There's a difference between being a native speaker and having a second language, and a difference between being monolingual and being bilingual, and the difference is in the way our views of the world are formed. The kids of Greek migrants in Australia often speak Greek from childhood, but they don't necessarily share their parents' Greek-cultured world-view. That's what these deaf parents are seeking: the deaf-culture world-view that goes with being a monolingual deaf ASL signer. Personally, I wouldn't make that choice: I'm all for multilingualism and breadth of experience. But as I've already said here, I find it hard to think myself into their shoes when it comes to these specific choices, because their circumstances are so far removed from mine: all I'm saying is that I can see why they might want to choose in ways different from how I and other non-deaf people would, because I value my own culture highly and would do my best to pass it on to my children.

I haven't said anything here about whether I support or oppose selective genetic screening. The whole point about this case is that genetic screening doesn't even come into it: it's selective breeding of a kind that can be practiced without any recourse to science. That's one reason why it's so interesting: if simple selective breeding can raise such profound qualms in so many onlookers, imagine how much more complicated the moral debates will get when genetic screening is more widely practiced.

"Culture does not determine that they have a sensory defect..." I'm trying to get at the difference between a defect, incontrovertibly and uncontroversially defined as a sense or an organ that doesn't work, and the culturally-defined concept of defectiveness. In other words, just because I have a defect doesn't necessarily mean that others will consider me 'defective', to the point where that defines me in their eyes. Whether they do or not depends on what their cultural and personal value systems consider 'defective'. 'You have defect X, but everybody has defects of some kind, you're just normal', or 'You have defect Y, and therefore you are a defective human being'. It's like the difference between a doctor pointing out that someone is mentally retarded in the medical sense, and an obnoxious school-kid calling them 'retarrrrded'.

"Because it is a parent trying to limit their child..."

They fuck you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.

—Philip Larkin.

 

Selective breeding is genetic screening. Suzuki and Knudson define genetic screening as "the examination of the genetic constitution of an individual—whether a fetus, a young child or a mature adult—in search of clues to the likelihood that this person will develop or transmit a heritable defect or disease" in Genethics. These women are screening on phenotype, just like Mendel did to establish the science. ¶ posted by NortonDC

 

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