Down Syndrome Awareness

October 1, 2005 8:53 AM

October is Down Syndrome Awareness Month - at a time when eugenics was socially sanctioned, John Langdon Down pioneered many of the techniques that are considered best practice today for encouraging the development of children with Down syndrome. Not long ago, standard practice in the United States was institutionlization from birth, which led to short, unhappy lives. Only in the past generation, have we rediscovered that with care and medical treatment, people with Trisomy 21 can and do flourish. Find a local Buddy Walk near you and get educated.
posted by plinth (27 comments total)

Despite having a close family friend with Down Syndrome who I've known for over a decade, I had no idea there was a Down Syndrome Awareness Month. Thanks.
posted by danb at 9:10 AM on October 1, 2005

You should be saying "discovered" not "rediscovered".

Parents should not be forced to raise a child with Down Syndrome.
posted by jeffburdges at 10:13 AM on October 1, 2005

The sad reality is that few live beyond 25 years of age.
posted by Mach3avelli at 10:43 AM on October 1, 2005

I had a 3rd cousin with Down Syndrome who lived to *65*! Amazing, and rare.
posted by tristeza at 10:52 AM on October 1, 2005

I guess we have to treat them like people nowadays, but at least it's socially acceptable to hunt them down and kill them right up until the minute they are born. Cool.
posted by peeping_Thomist at 11:41 AM on October 1, 2005

Apparently, Langdon Down had a grandson with Down's syndrome, who lived to be 65.

FYI, the simian crease is sometimes associated with Down's, but any parent of a child like this should know that about 3% of the total population has one or both hands with the same thing. (I have a kid with one of them, and a kid with two of them, both normal.)
posted by unrepentanthippie at 12:08 PM on October 1, 2005

The sad reality is that few live beyond 25 years of age.

Well, 25 is better than 0, I guess.

When answering a political-compass type quiz question about whether developmentally disabled folks should be "allowed" to reproduce, it hit me that on utilitarian grounds just letting people reproduce would be better than forced sterilization or whatever. It might be more expensive to (the welfare) society, but people are people and everyone should be allowed to reach for their best, and preventing genetic disability through eugenics also prevents the experience of life altogether, quite a nasty side-effect.

I would mock the resident mf papist troll, but with now 4 catholics on the SCOTUS, and undoubtedly another religious nominee coming down the chute I'm not in a mocking mood no mo'
posted by Heywood Mogroot at 12:43 PM on October 1, 2005

Machiavelli: The sad reality is that few live beyond 25 years of age.

Actually, the "can" link says that life expectancy is now 55.
posted by sour cream at 1:19 PM on October 1, 2005

Heywood Mogroot - Well, 25 is better than 0, I guess.

Yeah, but what's the quality of those 25, 55, 65 years? How much pain, and how much joy?
posted by PurplePorpoise at 1:35 PM on October 1, 2005

at least it's socially acceptable to hunt them down and kill them right up until the minute they are born. Cool.

"Hunt them down and kill them?" Give me a break.
posted by ludwig_van at 1:38 PM on October 1, 2005

Purple: pain is bad, I don't see any value in being born into a life of suffering. Tho were one draws the line is difficult. Ezcema is quite a burden but I don't think anyone wants to see parents abort their children for that defect/syndrome.

ludwig: thomist is something of a ... troll. Looking over his posting history shows he's just a culturally conservative Catholic, ie. conservatard. With 4 like-minded (using the term loosely) men on the SCOTUS now I expect he's feeling his oats.
posted by Heywood Mogroot at 1:54 PM on October 1, 2005

Heywood - yeah, I came across as an asshole there, but I think feel that quality of life is an important issue to consider.

I realize that you aren't arguing that ezcema produces the same amount of suffering as trisomy, or holoprosencephaly but you do bring up a good point wrt where to draw the line. What if Stephen Hawking's Amyotrophic Lateral Sclerosis was diagnosed in utero?

I don't have any answers, so I'll just shut up now.
posted by PurplePorpoise at 2:16 PM on October 1, 2005

All the Down's people I have known seem to have a pretty high quality of life, from their own perception. Provided that they are taken care of and encouraged to develop as much as possible, they are some of the happiest people I've ever met. Their lives don't feel limited to them, which is the only useful measure in my opinion.

Much the same for many disabled groups, I would imagine. Disability does not always = suffering. Within the horizons of a disability, a full life can often be lived.
posted by emjaybee at 2:35 PM on October 1, 2005

I had the privilege of working over the past two summers at an "independent living" group home for mentally diabled adults, one of whom was afflicted with Down's. He was one of, if not the most honest, fun-loving and genuinely good-natured people I have ever known. Then again, he was an only child and had a lifetime of unconditional love and support of his parents, so I can't assume that his experience is reflective of the average Down's person who may not have had access to the same amount of devotion.
posted by Sullenshady at 3:34 PM on October 1, 2005

I have opinions about this subject, but I have to admit that I haven't thought deeply about it yet. Thanks for this post.

From my perspective, I have no problem with parents that abort a defective fetus. Down's syndrome is a defect after all. I have a child, and I want him to live a full life and all that. I don't want a defective child, because he won't be able to pass my genes along, nor my ideas or anything else that a normal, healthy person takes from his or her parents.

Also, I don't think that the best reason for a person with Down Syndrome to exist is to teach us how to love. That rationale seems self-serving. I think that it is wonderful that people raise handicapped children and try to give them a happy life. But it's not for me. And I don't see anything wrong with choosing to opt out.

There are obviously many examples of thriving Down's Syndrome people. But I suspect that there are many, many more that don't thrive.
posted by recurve at 3:55 PM on October 1, 2005

recurve: yeah, I think it's a personal decision.

The radical religionists are right that birth control = abortion on the moral level.

'course, I think they're wrong in trying to get society to go along with criminalizing contraceptives and abortion, but I guess we'll see about that soon enough. Thanks, Ralph!

We are a free people, and I'm comfortable leaving total control over one's body up to the person, at least where the tradeoffs aren't that big a deal (I like motorycle helmet laws but think legalizing some/most/all drugs will work better).

Either way, I don't think leaving the decision up to the parents, and ultimately up to the mother, is that big a deal. Their lives, their decisions.
posted by Heywood Mogroot at 4:21 PM on October 1, 2005

I have an uncle with Down's. He's in his forties now, living in a supported environment. Since the time he had to be placed in care, he has become more independent, more capable, and happier. Leaving home was very good for his quality of life: my grandparents felt life-long guilt about his condition. And, yes, I know that is completely illogical of them.

I adore my uncle. He is greatly human, and my life is richer for him having been in it.

That said, I have no problems with parents that abort a fetus of any sort.

We humans have a pretty rich history of producing next-generations that are abused, abusing, broken, hurting, hurtful people. A lot of it is because people are forced, through societal pressures, to become ineffective, unwilling, incapable parents.

The cycle of abuse needs to stop. We need parents who choose to be parents and who are capable of being great parents.
posted by five fresh fish at 4:21 PM on October 1, 2005

Interestingly enough, while leukemia is fairly common in people with Down syndrome, breast cancer and testicular cancer are nearly unheard of.

I wish I had links to some of the portraits that Down had done of his patients through the years. They look formidable.
posted by plinth at 4:29 PM on October 1, 2005

Here's something I saw the other day, which is apropos to the current subject.
posted by e40 at 4:36 PM on October 1, 2005

I always assumed that the quality of life applied to the parents not the kids. I think it's not an accident that people talk about it as a quality of life issue for the (potential) kid. I guess it makes it easier to abort. (I'm pro choice, and fully supported my wife's genetic testing when she was pregnant at age 40).

As with any fetus, I think it should be aborted if the parents are not committed to it. Worst thing in the fucking world is to have an unwanted child, "normal" or not.
posted by e40 at 4:40 PM on October 1, 2005

Wonderful post, thanks plinth.

I used to coach a special olympics poly-hockey team. The team comprised several Downs kids/young adults. It was one of the the most enjoyable and rewarding experiences of my life. The Downs folks I interacted with certainly had their share of health problems, but health issues did not seem to impact their quality of life. We had a LOT of fun.

e40 -- I'd say that the worst thing in the world is to have a parent who didn't want you....
posted by tidecat at 5:14 PM on October 1, 2005

I don't know what's worse, Peeping Thomist's tenuous grasp of law (and logic) or his casual crapping on an otherwise wonderful post. The Dark Ages called, they want their teleological worldview back - and that silly tonsure, while yer at it.
posted by joe lisboa at 5:21 PM on October 1, 2005

I had a 3rd cousin with Down Syndrome who lived to *65*! Amazing, and rare.

It's not as rare as you think. I have a cousin with Down Syndrome who is about 50 years old.

By the way, I'm surprised nobody's brought up Michael Berube. His son Jamie has Down Syndrome and the son seems to be doing quite well. (By the way, Jamie is evidently quite knowledgeable about Beatles non-LP B-sides, despite what that lameass hipster bullshit article about retarded people loving Huey Lewis.) More to the point, Michael Berube has many wonderful essays on the sight where he philsophizes about Down syndrome, genetic testing, disability rights, and pro-choice politics--sometimes all at once.
posted by jonp72 at 5:55 PM on October 1, 2005

Joe Lisboa: I was casually crapping on jeffburdges's comment, not on the original post, which I thought was wonderful. One of my daughters has Down Syndrome, and I'm always happy to see good information about DS being disseminated.

ludwig van: yes, unborn children with DS are routinely hunted down and killed. Dangerous tests are administered (not infrequently resulting in spontaneous abortion) with the intention of terminating if there is a positive result. It's great that we are learning to treat people with DS as what they are: people. It's too bad that there is widespread acceptance for the practice of discriminating against them in utero.
posted by peeping_Thomist at 8:13 PM on October 1, 2005

I really don't think we should go down the utilitarian road of judging happiness to determine when it is valid or invalid to abort fetuses. It just seems so much like eugenics to me to start measuring the value of a person's life, and then deciding they should live or die, even though I DO NOT want to get into deciding whether a fetus is a person.

To me being pro-choice has a lot more to do with weighing the rights of both parties involved. It being the mother's body makes it a valid option, and I just don't understand thinking about this in a utilitarian fashion. If you are concerned about the stress on the family that has to care for the child I understand it, but if you are starting to judge the value of the fetus's potential* life in utilitarian terms, that opens a quagmire of bizarre possibilities that could arise. I think you are advocating that branch of utilitarianism which sacrifices personal choices/preferences for greater happiness, (the idea that happiness, at least seen in these ways, is "the good" is something I totally do reject. I'm a little more sympathetic to personal preferences as the good but I still think it is flawed.) I know it is going to come down to the mother's choice. I know that nobody is ever going to force anybody to have an abortion. But I think the influences that people in the medical profession wield, and the advice that we would give to people in this situation should never ever be to judge the value of the life of the child that would result if the pregnancy was completed. If they want to try to make that judgment, I don't suppose I can/should stop them, but I can't defend pushing them towards it in any way.

In the end the only being that can judge the happiness, (or value by whatever standard they personally think is best, which is a choice that they should be able to make), of a person's life is that person. We should not abuse the difficult choices of abortion to try and weed out babies that we think, (no matter how much we think it), should not be born. Abortion is going to be about a mother's rights if it is ever about anything. You aren't going to sell it on quasi-eugenics arguments. I can't tell you to what extent a fetus is a person, but my least favorite thing about the abortion debate is honestly the way that it has opened the door to this kind of choice, not by the mother who has the right, but by other parties, to try and value a fetus. Do we ever consider that kind of calculation to be... a humane way to treat our fellow human beings in any situation where death is not absolutely imminent? And even then do we not usually try as hard as we can to follow what they would desire be done if we have any idea what it would be, instead of what we calculate as best?

And I'm not trying to be a troll here, but if the logic is that downs syndrome children should not live because of the suffering that their existence creates, not because it is the mother's right to choose whether she undergoes pregnancy/motherhood of a child afflicted with X disease, then honestly, what does abortion have to do with the argument? Why don't we stop loading the right to choose, which is currently in danger of losing recognition in the US anyway, down with eugenics that really doesn't relate at all to abortion (except that abortion provides a nice simple window for otherwise abhorrently impossible ideas)? Why not just advocate killing them?

*I don't know how discuss the possibility of an uninterrupted fetus becoming what we think of as a complete person without sort of calling it a complete person, so this may sound like I'm taking sides in the personhood debate which I don't want to do in this post. I know some very nice pro-life and pro-choice people, and if you consider either of those positions to be patently illogical or that there aren't honorable people on both sides of the debate, then, well, you need to be exposed to more different kinds of people. I will say that I think, even viewing it as a person, abortion is justified because it is the mother's right to choose over something so intimately her's as her body. If you were told that a "complete" person had to live inside you for 9 months, and if you removed them before that they would die, would you not consider it your right to make that choice? I just don't care to start calling anything 1/2 a person, or sort of a person, or a soon to be person or whatnot. Abortion is justified to me regardless of fetus personhood status. It is possible that my position on this is incorrect, (logically/philosophically unsound, I mean. Morally also, but I don't think you can prove that to me. I'll listen if you try though).

And maybe I'm missing some information somewhere, but despite the horrors of the child abuse scandal and the intolerable response from the leaders of the church, Catholicism doesn't scare me near as much as the Protestant sects.
posted by SomeOneElse at 10:01 PM on October 1, 2005

To me being pro-choice has a lot more to do with weighing the rights of both parties involved.

I agree that the utilitarian argument will lead to odd places, like having to axe-murder and eat 3 babies to save a boatload of parakeets.

Abortion is justified to me regardless of fetus personhood status.

Me too. The principle of the primacy of the woman's freedom of action seems inviolate to me. But this is a complicated subject and I do respect pro-life people's arguments since they are certainly arguing a strong moral case. (but without the "eternal soul" baggage I don't find it compelling).

Catholicism doesn't scare me near as much as the Protestant sects.

Scalia and Santorum typify the 'scariness' of Catholics to me.

I guess the "scary" Catholics are the most militant in their support of the evangelical agenda ("Culture of Life" [except the death penalty], pro public prayer, abstinence education, dismantling of public secular organizations like our schools in favor of private, sectarian replacements, and reactionary moralizing on everyone else's faults but their own).

Rightwing Catholics to me also bring in the baggage of Pinochet and other death squad activities against marxist reformers. Catholicism, outside of the now-heretical Liberation Theology movement, has always treated Marxism as a mortal threat, and it's their historical tendency to put ends before means that sickens me about the modern Catholics body.

Plus the dogmatism of the 2nd Council of Ephesus in 873AD was really bogus, man (j/k).
posted by Heywood Mogroot at 3:52 AM on October 2, 2005

Perhaps, if you would like to debate the merits of abortion or the lack thereof, you might want to start a thread of MetaTalk.

Meantime, here is the site for Revolution Earth, the producers of Shorty.

Here is an article about cancer resistance in trisomy 21.

Here is a brief blurb about leukemia and other blood disorders.

Here is an article about heart defects in DS, which are shockingly common. Fortunately, early detection and correction of these through tradition open heart surgery or, where practical through minimally invasive techniques have proven to be one of the key ingredients to leading a long and healthy life.

And FYI, another reason why this generation has the best future prospects than any before is that the states have realized that Early Intervention--the process of treating developmental disabilities early in a child's life--for the first three years makes the goal of being a productive member of a community a real, attainable goal for many who would've been wards of the state.

On the bad side, inheritance laws are a little funny in that, if a person with mental disabilities is being aided by the state as an adult, the state will sieze all there assets to pay for services, but the level of service is not commensurate with how much was taken. For example, if a parent left their house to their child, the state would, likely, take it and put the child in a group home. In short, it is necessary for parents/grandparents to create a trust in the name of their child and leave assets to the trust.
posted by plinth at 6:10 AM on October 2, 2005