December 5, 2006

Is it wrong for a disabled parent...

... to want a child with the same disability?
[S]ome parents had the painful and expensive fertility procedure for the express purpose of having children with a defective gene. It turns out that some mothers and fathers don’t view certain genetic conditions as disabilities but as a way to enter into a rich, shared culture....

Mary Ellen Little, a New Jersey nurse with dwarfism, had her first daughter before a prenatal test for achondroplasia was available. For her second child, she had amniocentesis. “I prayed for a little one,” meaning a dwarf, she told me.

The wait, she recalled, was grueling, since “I figured I couldn’t be blessed twice, but I was.” Both her daughters, now 11 and 7, are “little people.”

32 comments:

Revenant said...

Is it wrong for a disabled parent to want a child with the same disability?

I certainly think so -- and no coherent argument for the "no" position comes to mind.

Eli Blake said...

Revenant:

I would disagree with you there. Obviously, one can think of some genetic diseases, such as hemophilia, sickle cell or cystic fibrosis in which having the condition can cause a lifetime of more pain than not having it. So in that case I might agree with you.

However, in the case cited, dwarfism is not one of those conditions. During the middle ages perhaps dwarfs were forced to do certain types of jobs, as well as being physically unable to perform other jobs, but in today's world there is no reason to think that Ms. Little's two daughters can't grow up to lead normal, healthy lives.

If anything, maybe we need to reconsider what we consider 'defective.' There was a time, not so terribly long ago, when genes which produced dark skin , or perhaps the lack of a y-chromosome, were considered 'less desirable.' But today we know that is so much garbage.

I guess I don't understand why someone would be considered 'defective' because they are short.

Paco Wové said...

Q: Is dwarfism considered a disability?

A: Opinions vary within the dwarf community. Certainly a number of short-statured people could be considered disabled as a result of conditions, mainly orthopedic, related to their type of dwarfism. In addition, access issues and problems exist even for healthy LPs. Consider, for example, the simple fact that most achondroplastic adults cannot reach an automated teller machine. Dwarfism is a recognized condition under the Americans with Disabilities Act. Information on the ADA is also available directly from the US Department of Justice, which administers the law.

(link)

Nobody said anything about "defective."

MadisonMan said...

Wanting a child to be like you is a common feeling. Why should short people be any different?

Alex said...

yes.

glad we cleared that up.

lets consider the dwarfism case. what do you think being a dwarf does to the likelihood of finding a compatible mate? (hint: the potential pool gets a lot smaller... in more ways than one...)

Revenant said...

Obviously, one can think of some genetic diseases, such as hemophilia, sickle cell or cystic fibrosis in which having the condition can cause a lifetime of more pain than not having it. So in that case I might agree with you. However, in the case cited, dwarfism is not one of those conditions.

Dwarfism does not cause any physical pain or suffering, and doesn't necessarily cause further medical problems. But then, neither does Trimethylaminuria. Should we think nothing of it if a mother wants her children to reek of rotting fish?

Oh, but I forgot -- blacks and women used to be discriminated against, which means that we just need to get over our dislike of body odor, or something.

Revenant said...

Wanting a child to be like you is a common feeling. Why should short people be any different?

The fact that many people treat parenting as an exercise in narcissism is no reason to excuse the behavior.

Simon said...

Is it really necessary to ask if wishing disability upon a child makes one a bad person? The answer is, always, yes. Yes it does. No ifs, no buts, no exceptions - yes. Yes it does.

TabithaRuth said...

There are lots of traits that I hope I don't pass on to my kids, genetically or otherwise.

Simon said...

MadisonMan said...
"Wanting a child to be like you is a common feeling."

I want my son to be like me insofar as I want him to share my value for human life, my intellectual curiosity, my sense of wonder at the universe, and my concern for detail. On the other hand, I certainly don't want him to be like me in that I don't want him to have to deal with crippling bouts of depression, self-doubt and insomnia. Wanting your child to be like you is a universal trait of parents. Being unable to differentiate "disability" from a positive trait, and wishing the former on a child as the latter, should be a person's first clue that they are not yet emotionally mature enough to be a parent.

downtownlad said...

I know deaf people. And I know they would probably want the same thing. They don't see their deafness as a disability. Deaf people are very proud of their tight knit community. And raising a son who could hear would probably make their life a lot more complicated.

I think it's all about choice and I see this as a positive thing.

gj said...

In general, I'm opposed to using abortion as a way to select for characteristics that parents consider desirable. So I'm opposed to the use of abortion for sex selection, I'd be opposed to the use of abortion for eye color selection, and I guess I'd be opposed to the use of abortion for height or hearing acuity selection. The fact that the parents profiled in this article are selecting in the opposite direction that most of us would is irrelevant.

Now, there are some potentially mitigating circumstances here. If a group (such as dwarfs or to some extent deaf people) consider their communities to be under the assault of an attempted genocide, then I could maybe see a sufficient rationale for bringing more of the group into the world. There's also the question of whether a dwarf would have trouble raising a full height child, or a deaf person have trouble raising a hearing child.

But generally I'm opposed, and it has nothing to do with the fact that most of us consider dwarfism or deafness disabilities. Clearly the people who have these characteristics don't consider it to be a disability, and that's important.

You don't hear about blind people wanting to have blind children, and you don't hear about people with cerebral palsy wanting to have similarly afflicted children. So there is a distinction.

Anon Y. Mous said...

"Nobody said anything about 'defective.'"

OK, I'll say it. Someone who is disabled is defective. They are also handicapped. There is no reason to be afraid of language. I have defective eyes. Not that I'm blind, but I sure don't see very well without corrective measures. It is a defect.

Any parent, given a choice, who then deliberately chooses to inflict their defect onto their child is incredibly selfish, and by definition unfit to be a parent.

Abraham said...

I think it's all about choice and I see this as a positive thing.

I have a hard time telling when you're serious and when you're just trolling.

Goesh said...

- as long as she can tell her kids that when they are adults, that she wanted them to have the stares and inconveniences, all will be fine...

knoxgirl said...

I can understand feeling that way, but anyone who's even close to emotionally mature--as Madisonman said--would firmly set aside those feelings. It's pretty gross to want anything but the best for your kids. A life coping with a disability is NOT the best.

SteveWe said...

The words "There but for the grace of God go I." were uttered by John Bradford while imprisoned in the Tower of London, when he saw a criminal going to execution.

But parents who intentionally choose malfunctioning genes that produce disabilities similar to their own, turn that saying and outlook on its head.

"Cognitive dissonance" refers to the practice of resolving a conflict between our observations and our beliefs about the world and ourselves.

When prospective parents select for the same disability they have, they're trying to lessen the dissonance they're experiencing. How selfish can we be?

There, by the frail power of man, go I again. And I feel so much better about myself having the same misery accompany me.

DannyNoonan said...

Is this so different than wanting your child to have the same religion as you? Or the same politics? Lots of people subject their kids to that kind of stuff at a very young age. I realize there's still an element of choice for the kid, but I think it's just as wrong.

reader_iam said...

Danny, a hypothetical:

A deaf couple produces a deaf child, whose situation can be altered via a cochlear implant, which doctors etc. recommend. They choose not to do so (for the reasons to which DTL points).

This deaf couple is also quite religious, and of a fundamentalist flavor. They choose to raise their child in that same tradition (for reasons, by the way, that could be described in strikingly similar terms to what DTL used).

Comments?

(By the way, I lied: This is not a hypothetical. I know this family. Added info: One of the parents has also had cochlear implants recommended.)

reader_iam said...

There is a second child, by the way--who is hearing.

pst314 said...

"I know deaf people. And I know they would probably want the same thing."

Which reminds me: Ann Althouse was musing recently on the nature and origins of tribalism.

res_ipsa_loquitur said...

Have we already forgotten the story of the two deaf lesbians from a few years ago?

http://www.cnsnews.com/ViewCulture.asp?Page=/Culture/archive/200204/CUL20020402a.html

Try reading this story and tell me your gut reaction isn't "sick, sick, sick." I really agree about the "parenting as narcissism" comment.

(Side note: somebody I knew once commented that "Two Deaf Lesbians" would make a great band name.)

Anonymous said...

Revenant wrote: "The fact that many people treat parenting as an exercise in narcissism is no reason to excuse the behavior."

Wow. Excellent point, made beautifully.

There is a type of transference called twinning, in which one person models themselves after an important person in their life. This is typically most powerful among pre and elementary school age children.

It also occurs in therapy, when the patient overly identifies with the therapist for a short while. Here, it seems that this immature identification is being foisted upon children. I prayed that my genetic daughter would not have my ADD, and my prayers were answered. While my way of concentrating and thinking has some advantages, she is blessed with more typical attentional abilities.

Trey

Mike Lief said...

It goes hand in hand with the inability of the multi-culti relativists to pronounce anything better or worse — only different.

It’s like deaf activists opposing cochlear implants for children, because to give them the gift of hearing implies that being deaf is in some way a handicap.

Well, read my lips: Duh.

Can you imagine denying your child the opportunity to hear music? To thrill to Kenneth Branagh’s St Crispin’s Day speech from Henry V?

Not yet being a parent, I’ll defer to Anne's expertise, but I’d like to think that I’d want my children to be better than me, to enjoy more opportunities, and therefore, I’d never do anything to ensure that they’d have some disabilities that would make life more difficult for them.

And, yeah, I said “disabilities,” ’cause midgets and the deaf and blind aren’t “differently abled,” they’re at a significant disadvantage when compared to those without handicaps.

Cat said...

Yes it is wrong to wish a disability on a child.

Sure, many people with disabilities can do all the same things as people without. However, they do it with great difficulty.

For example, I was thinking the other day how hard it would be to get around New York City if I had depended on a wheel chair. I noticed how few handicapped accessable subway stations there are (elevator). Although buses are accessable, it would take so much longer, and it would still be a hassle.

I also watched a documentary on a deaf family and how half the family were against the cochlear implant. Those in the family who were against the cochlear implant seemed scared of losing their child to the world, IMHO. They were for it, strangely, until they saw how the cochlear kids were able to function outside of the deaf community. In fact, one of the adults who chose not to get it for their child only became "anti-cochlear" after she was told that implantation in her as an adult would be much less successful, particularly when it comes to mastering verbal communication than her child (where it is highly successful the younger they are). It was really all about the parent worrying about "losing" their child to the hearing world.

One set of deaf parents kept meanly accusing their hearing daughter of not loving her deaf child (their grandchild) because she was getting the implant for him. The same grandparents completely ignored how dependant they were on the daughter's hearing when she grew up and all of the roadblocks they had as deaf people. Again, there was aself centered attitude that by allowing the grandchild to hear was wrong because of how it made the granparents feel. And the manipulation of the children from the deaf grandparents was incredible.

One of the other things I remember about that documentary was the fact that one of the parents strongly against the implants said that being deaf had not hindered him in his employment success. Yet when the documentary filmed at his office location, you found he needed a lot of assistance from people who could translate for him what was going on and his position seemed "dead end." How can anyone say that his deafness has not hindered his career or his life?

To wish that your child does not have the full faculities and physical abilitites possible (and having short limbs does hinder your physical abilities) is wrong. A mature adult would want their child to have as much ability and opportunities as possible available for their children.

The Exalted said...

its a stupid desire, and those who desire it are stupid.

Anonymous said...

Is it wrong for a disabled parent to want a child with the same disability?

What a fantastic question!

I don't think it's wrong. While people with dwarfism certainly have challenges in life most of us big folk will never understand, who among us can claim we are without challenges? Who's perfect? And what human being isn't perfectly human (in the fundamental humanist sense)?

I think it's beautiful that those who are classified as disabled (by their doctors, family, society), don't see themselves as such.

Instead, I think it's sad that people think they have the right to impose their definition of disabled onto others, and wrong to tell people that they are "wrong" to want children with whom they can more easily relate with (and thus be a better parent to).

Again, great question! Ann, I'd love to hear your answer to your question.

Anonymous said...

I'm back again.

I love this question (like I said), mainly because it's not a simple one--well, for me anyway.

I've thought about it more, I think I have a different opinion about whose who would deliberately bringing a blind or deaf child into the world.

The "disease" of dwarfism doesn't effect the 5 senses, and dwarfs can function and interact in the world around them.

I don't understand anybody would want to deprive a being of hearing or seeing (like the parents who don't want their child to get the cochlear implant). That seems most unfair.

Revenant said...

The "disease" of dwarfism doesn't effect the 5 senses, and dwarfs can function and interact in the world around them.

Yes, deformed people can function and interact. They're still deformed. In a just and fair world, people who wished deformations on their children would get cancer and die.

Cat said...

Janelle - it may be beautiful that someone doesn't consider themselves disabled, but as you say in your second post about parents denying their children implants, why would you WISH dwarfism on your children? Don't you think it's a bit selfish to want a child with the same condition so you'll relate to them? How is that any different to the feelings of the parents of deaf children who fear losing their children to the hearing world?

Eli Blake said...

When I used the word, 'defective' I was referring to the original post which says:

[S]ome parents had the painful and expensive fertility procedure for the express purpose of having children with a defective gene.

Billy Beck said...

"...in today's world there is no reason to think that Ms. Little's two daughters can't grow up to lead normal, healthy lives."

Unless, perhaps, they might one day look up into the sky and dream about, say, flying airplanes for a living.

That's just one example.

"Normal" in this whole context implies nothing but the entire range of opportunities open to average-sized people. It's pretty easy for someone to sit around and call the constrained set of opportunities open to dwarfism "normal", but it's a plain fact that it simply isn't.