A couple, both severely retarded/down's syndrome/etcetera: should society literally prevent them from having children?

Your other question was easier. Neither of them are able to take care of the child?

Yes I think they should prevent them. I have worked for years doing support work for people with severe disabilities some of them 5th generation people in constant care. Its difficult to tell what quality of life they have as they dont have the capacity to express it or in many cases the grasp of idea of it. They will never have much of a future and will always need carers and be a drain on the community, they dont have the capacity to look after the child and so that will have to be done by the community as well and so the cycle goes on and on pointlessly. I had very different views on this before working with the reality of it and I imagine that a lot of people who have never worked in the care industry would find the idea of taking what might be called The right to choice away from someone appalling, but you know reality isnt all sunshine and rainbows.

I think they should be sterilized.

Back as recently as Buck v. Bell, less than 100 years ago, the U.S. actually legally advocated for the sterilization of such individuals.

Any discussion about whether “x or y group” should be allowed to reproduce will inevitably lead us to conversations based on eugenic thought. I fall victim to the “slippery slope” argument many times…but this is one of the cases where I openly claim that we shouldn’t even begin to have the conversation in a serious manner. Although I understand @noodle_poodle‘s perspective, and from a practical perspective 100% agree, from another practical standpoint I have to wonder how often this is actually an issue. These decisions need to be left to the families involved, and the drain on societal resources brought about by the “wrong decision” is minimal, I argue, to the point of being able to disregard it in the overall scheme of costs. And when we consider the potentially severe invasion of civil liberties suggested by such an approach, the potential benefits of going forward with this as a policy are outweighed profoundly.

As to @marinelife‘s suggestion that they be sterilized, I can only hope and expect that it was sarcasm to illuminate the danger of the less-brutal suggestion in this question. If not, I would direct @marinelife to the U.S. Supreme Court case cited above, and the profound legal and liberty issues that we already experienced with such a policy.

Such a difficult question. If the parents are unable to take care of the children, then the state (America) would interfere and remove the child due to neglect or abuse. But, your question is should we be proactive and prevent the possibility of the situation in the first place. I do find it distasteful and sad to take away a persons ability to have children, but I think in severe cases it is probably the right thing to do. I have no idea what our laws are in the US regarding the issue. I am definitely in favor of the state being willing to pay for it. I guess people who are severly retarded have court ordered power of attorney given to a care giver, and maybe it is up to the care giver?

What about women who keep having baby after baby taken away from them because they cannot competenly take care of their kids, but are not technically retarded or have a chomosonal disorder, can we sterilize them?

As a side note, from what I understand, many genetic disorders, like down syndrome, render the individual infertile naturally, or their fertility is severly compromised.

Years ago in the late 70’s when I was about 18–19, I worked for a developmentally disabled school/ facility as an aide.

The in house residents were all young adults ranging from late teens to late 20’s and some had undergone sterilization ‘procedures.’

It was not at all uncommon to ‘catch’ residents in sexually comprimising ‘posistions’ from time to time, although, rarely, did this lend itself to actual intercourse.

I always had great empathy for these people whom KNEW they were not ‘normal’ yet longed for normalacy.

The DD group is labeled either ( or at least they used to be ) ‘trainable’ or ‘educable.’

Part of my work was teaching living skills and we had several girls that were able to go on to take a few college level courses and maintain an apartment lifestyle with monitoring.

It’s a touchy subject but..I think those evaluated as ‘educable’ should be allowed to form a family if proven capable.

I don’t know the stats on the DD being predisposed to reproducing other DD offspring, but, I am pretty sure, depending, that often this is not the case and they can raise healthy, ‘normal’ children with aide.

I am not in favor of mandatory sterilization unless the person in question is severely dysfunctional.

I am one of those folks who believe it is not my job to financially or otherwise be responsible for anyone’s children. If you can’t care for them or pay for them or stay home and take care of them, then you should not have them. And to me this example is no different.

So I say no they shouldn’t have children. The tricky part is I also don’t think it is the responsibility of the government to dictate who and how many children anyone should have.

Delicate situation to say the least.

@iamthemob well there is indeed a slippery slope element to the equation and there should be room for proper consideration in all cases..on other things i disagree. That you wonder how often its an issue, and you believe the costs to be negligable suggests just that you just havnt been much exposed to the circumstances. I think if most people knew quite how much money is involved in the long term care for these children/adults and just how many of them there are, they would be shocked and awed that society in general manges to provide it. You dont see them in shops or in parks because they dont move in the same circles as the everday person but that does not mean they don exist in quantity.

I know nothing of the numbers involved here that @noodle_poodle and @iamthemob refer to. Do either of you have some figures/percentages/sites you could cite or sources where I could get information?

I see a big civil rights violation here. i understand your reasoning behind your question. this would be like telling men and women, who are drug addicts, that they cannot have children.

I think society just has to accept the consequences in a situation like this.

After all, many babies have been born without the physical and mental conditions of their parents.

In a truly just society, families would take care of themselves and take care of their own, and this would be an entirely in-family decision.

Unfortunately, we’re moving farther and farther from that ideal, and as a matter of policy will probably adopt some kind of ‘family readiness’ or ‘nurture ability’ testing at some point after we all take responsibility for each other via national health insurance (or however else we do it). That might save us from going the Chinese route of limiting all family sizes that caused them so much angst in the past decade or so.

But I will never agree that government ‘should’ take a lead in this. Never.

@JilltheTooth I couldnt give you figures off the top of my head nor discuss any cases as that would be breaking a few rules but I dare say you could find out if you searched google for certain things and looked up how many special schools for the severly disabled exist in your local towns and cities.

@iamthemob I worry about the slippery slope also as implied in my answer. But, it might be interesting to know that close to 50% of down syndrome babies have heart defects, and many have severe digestive problems, in both cases many times needing surgery. I think, if I remember correctly there are approximately half a million down syndrome people living in America, but you should check me, and that is not counting other severly disabled people. Not sure if you would consider that a social burden or not? Society has significant costs associated with them for medical care, schooling, therapy, and more. Most families cannot afford all of the costs on their own. I believe that a down syndrome woman has a high chance of giving birth to a down syndrome child, so I wonder what you think about aborting a fetus if it is found to have downs as well? So, not preventing her from getting pregnant, but preventing another baby born with the genetic abnormality?

Side note: I think I was not clear above, men are sterile when they have down syndrome, and women supposedly can suffer from impaired fertlity, I don’t know how often they get pregnant, or what specifically is the physical impairment among women?

Before anyone points it out I realize that my opinion on this sways a little close to nazi’ish philosophy and it worries me as much as anyone. I do think that, at this time, this wont be much of a consideration nor will the chinese route that @CyanoticWasp mentions but you do have wonder how long the population will continue to swell before it is. As a uk resident I hear a lot of stuff about over crowding and in many cases you can see it (i know its a different issue) and I am glad that i live in the relatively happy go lucky age that I do. Sooner or later difficult decisions are going to have to be made and no one is going to want to make them and they will probably end up making themselves. gloomy view of the future I know but mine nonetheless.

No. I know a child who’s parents both have learning difficulties (or insert PC term here). The child has a high IQ, exceptional social skills and is probably the nicest person I know. To deny her the chance to exist just because you take offense to her parents haveing sex is barbaric

@noodle_poodle – I don’t dismiss the fact that the individual costs are profound – but whether there would be a significant decrease in cost if the state were to get involved I think is highly debatable. In order to remove this right from people, I am certain that the legal costs (e.g., assigning a guardian ad litum, for instance) and the new administrative mechanisms that would be put in place to ensure the state administered a program of determination fairly would balance if not, more than likely, exceed the costs associated with leaving the decision up to the caretakers of these individuals. I feel, though, that currently it’s more than likely the default that disabled individuals are socially segregated from each other in such a manner that we already have a de facto system of prevention in place. If we consider that the U.S. is ranked #1 for prison population (in terms of percentage of the general population, number, and almost every conceivable permutation of the ranking), and that prisoners are the only individuals in our country, ironically, guaranteed free health care – I consider the health care costs associated with the issue discussed here more of a “drop in the bucket” issue – massive on an individual level, you’re correct to point out, but affecting a small portion of individuals.

PS – I don’t think anyone (or at least hope no one) was going to align you with the Nazis (aside from my eugenics comment earlier). Again, I think @CyanoticWasp and I agree that this is something that should outside the purview of the state, except in the instances where the state is the caretaker. When we do discuss impaired individuals, we also have to recognize that their liberties are limited based on whether they have legal capacity. This already will be decided on a case-by-case basis if a caretaker attempts to prevent a disabled individual from exercising any “right to a family” (an implied Constitutional right in the U.S.), and I think that system is all the state involvement we need.

@JLeslie – Any “policy” that would require someone to abort a child, or that would require sterilization or segregation in a sexual manner, I would find deeply disturbing. The highest correlation seems to be the age of the mother for Down syndrome – the greatest cost-saving mechanism, therefore, might be to induce testing and abortion for women over 35 years of age. The costs associated with Down syndrome people having Down syndrome babies…again, I’d want to see how frequently this occurred and how often the costs were shuffled to the taxpayer, what circumstances it occurred in, and how those circumstances could be avoided before we even thought about having a discussion about preventing “types” from having families (and I doubt in any case the scariest of numbers could convince me, to be honest, that it would be okay).

@JilltheTooth – This disability newsletter article gives you an idea of the high costs associated with institutionalized care. For more general statistics, I would tool around the EEOC and Department of Health and Human Services sites.

Depends on who ultimately is going to take care of the children.

@iamthemob : Thanks for the link.

@iamthemob I only meant forced abortion when the mother is down syndrome herself.

In 2004, there were 42 deaths for the profoundly retarded in the United States. You can see the chart here. There were 309 deaths for all forms of mental retardation.

It’s hard to know how the death rate relates to the total number of mentally retarded, but I think multiplying it by the current death rate in the US (.008) would give us an estimate of around 40,000 mentally retarded in the US, and between five and six thousand profoundly mentally retarded.

Six thousand people in the entire US. and we want to prevent them from breeding because they can’t be good parents—or we think they can’t be good parents?

Too dangerous to make it illegal, even if we could. The danger to civil rights is way more than the cost of taking care of children from such parents. Who may not even know how to consummate the act.

@JLeslie – I know. But considering that we don’t know if the woman with Down syndrome can manage to care for the baby, whether she has a support system if she cant, and most of the instances of Down’s are related to age – I’m asking why stop there? Shouldn’t we demand it from older women as well?

That’s the danger, I see, in the arguments where “costs to society” are weighed against “individual sacred liberties” in this manner.

And what @wundayatta said – again, the potential liberty costs can’t be compared to the small overall health care savings we’d potentially get.

@iamthemob The problem with making women get tested to see if their baby has DS is that it is an invasive test (chorionic villus sampling or amniocentesis) that also comes with a risk of miscarriage. There are other noninvasive tests, the nuchal translucency scan and some blood work, but those tests only give you a risk (1:x) of having a child with DS (or other trisomy disorders).

@Seaofclouds – I would argue against the tests, and against policy regarding what to do if the test was positive, in any sense – so that’s an excellent argument against trying to create any policy at all. Again, it should be left to the family, the caretaker, etc., and individual legal issues can be handled by the family on a case-by-case basis.

I believe in a free society in which anyone can have a child with no restrictions as long as they want one.

“Genetic diversity” and all that.

@iamthemob Yeah, I tend to agree actually. What bothers me most, quite honestly, maybe more than taking away her ability to have children is to force any person to have a surgical procedure done to them. That is really difficult for me to get behind. I think even people who are mentally impaired understand that their body is their own, or should be.

@iamthemob I agree. It should remain a family issue, to be handled individually, without the state starting to say who can and can’t have kids or who should get sterilized.

@JLeslie – And if they don’t, they’ll more than likely be under the care of someone who does understand that “their body is their own, or should be” that is more than likely legally responsible for making decisions for them. Where there is a legal issue, it should be handled by the family or caretaker, and the state should be involved only if the state is already the caretaker…policies just get too dangerous.

@Seaofclouds – Ditto. ;-)

@Seaofclouds But there are cases where the person who is mentally disabled are wards of the state I would think? I’m sure this is a very small percentage, but it must happen. Especially if the mental retardation is generational.

@seazen How do you and the state of Israel look at it?

@iamthemob I just read your last post. Yes, I see the differentiation you are making between policy, and looking at individual cases. Sounds right to me.

It’s an extremely difficult issue and I think both sides are well covered above. I’m only posting because I think the numbers discussed are extremely low and do not represent the true number of people that are affected or how common this issue is for families.

It’s hard to nail down exact numbers when there isn’t an accepted collection of conditions that would qualify for anything in particular, especially something as complicated as who would be considered unable to care for a child. Here are some numbers to give everyone a general idea that we’re not just talking about a tiny subset of the population…

- The Arc cites a source that estimates 4.6 million American live with “an intellectual or developmental disability” (link to the Arc site) – that would represent almost 1.5% of the total population in the US – (to put that in perspective, this is slightly less than the percentage of people who identify as Jewish in the US)

- Between 3000 and 6000 children are born in the US each year with Down’s Syndrome alone (depending on the source), there are an estimated 400,000 people living in the US with Down’s Syndrome (link to the March of Dimes for citation)

One of my favorite people in the world was born with Down’s Syndrome so I’ve been able to work with a lot of individuals with that condition. Their abilities have such a huge range it’s so hard to lump them all together as I said above. Some I’d probably trust with my own child, some are very lost in their own lives and need a great deal of assistance.

Interesting point, @funkdaddy – and I do think it’s important to bring in the entire range of people that could potentially be brought into “regulation” were something like this to move forward.

I don’t believe anyone not able to care for themselves should be having children and I don’t want to foot the bill for it for special programs when they do. Mandatory sterilization sounds so severe, I don’t know what the percentages are for two DD people to produce DD children but I can’t imagine they would want to on purpose.

It sounds severe but if I had a DD child then I would have them sterilized.

@iamthemob But, I am curious. If it were your child, would you prefer she be sterilized? I actually had a DS friend when I was in elementary school. I loved playing with him, it did not even register with me that I should think about him differently. So my personal experience was positive from a child’s perspective. But, if I were pregnant with a DS child I know I would abort. From what I understand 90% of women who find out they are pregnant with a fetus having significant genetic abnormalities do. But, now I am off on a tangent. If it were my own daughter I am not sure what I would do to be honest, as much as I lean towards aborting those pregnancies, and not bringing children into the world that are likely to have severe physical or mental difficulties like, DS or CF and other identifiable diseases.

@JLeslie – Sterilized? No, not at all. If it were a situation where the child couldn’t be watched over, was running out and was repeatedly getting pregnant, then I might reexamine the issue. But to take such a drastic, permanent step where I was deciding the future of my child? No…not to be blunt, but I neutered my dog, I wouldn’t do so with my child.

The idea that there should be surgical intervention when you are responsible for watching your child to make sure that they didn’t get into those situations – I would liken that to surgically removing your child’s legs to be extra certain they wouldn’t run into the street when you weren’t looking (again, not to be blunt – but I guess I kind of am).

To get at the essence of what you’re asking, I’d have to admit that I would prefer that my child be sterile if reproduction were a grave concern. But not sterilized. And I don’t know about having a child of mine aborted because of DDs. I understand it as a personal choice, but I don’t think I could make it. I would always wonder – some of the most profoundly influential people have had a DD of one form or another, and some of the most interesting people I know have had CF.

I have a family member that has Down’s Syndrome. One her best days, she operates on the level of a 6yr old, more likely a 4yr old. I could never see forcing her to be sterilized, nor do I see it becoming an issue. There were times where she showed more of a sexual side, when she went through (and still does) crushes on other people, but overall, never did she have the sense of “wanting” a family. I can’t tell you if it had to do with her level of understanding or just her nature – whether or not she really ever wanted children.

Through several social workers, doctors, therapists and work therapists; we have found that she has little understanding of the true function of things, even though none of us ever hid things from her. Explaining her period was a bit tricky. She was at a higher risk of someone taking advantage of her, rather than her actually involving in the act of intercourse.

I struggle with this, because I know if she ever had a child, it would not be her raising the child. More than likely, it would be my husband and I. I just still struggle with the idea that she should be forced to be sterilized. She may be impaired, but she’s still human and still has rights. I won’t say that I wouldn’t prefer her to be sterile; however, I won’t say I agree that she should go through the procedure.

For reference, my relative is now in her 50’s and going through menopause.

@cak Yeah, you named all of the quandaries in my head. Prefer she is sterilized, but loathe the idea of forcing her to go through a surgical procedure. Worried she might be more at risk for being taken advantage of sexually. The burden of raising the child would fall onto others. I found your comment that she never seemed to “want” a family interesting. I wonder if that is typical?

@cak: Your last paragraph is more concise than I could ever be but exactly how I would feel. Is sterilization dehumanizing in order to protect someone who can’t always protect themselves?

@JLeslie: I have no statistics to back this up, but think about small children. They want and give, but generally their wants can outweigh what they give. I’m not measuring love, that’s not a factor. However, when I think about memories of her, she just responded more in a childlike fashion. I think it would depend; or must depend, on age and developmental stage of the person. My aunt is a very young person, mentally. She’s still a child. She cares about others, but is still in that more “selfish” stage, for lack of a better word. does that make sense?

@cak

I understand what you say.
Yes, narcissism is normal and healthy for smaller children, or someone such as your Aunt.
Sadly, there are thousands of so called ‘normal’ folk that are narcissistic as well, never develop beyond their adolescence, and they reproduce all the time. lol

How many children are born from the grossly self centered ‘normals’? hahaha

@Coloma Excellent point! And thank you, I couldn’t find a word to fit what I was saying. Tongue tied on the computer. That’s pretty pitiful!

What a great thread this turned out to be – and in General, yet. Thanks Jellies. Lurve ya.

@cak It does make sense. But, when I think of young girls, many of them idealize having a baby, very young children want a baby doll. So, I wondered if maybe mentally stunted women might still feel that desire for a baby to hold, be theirs. Or, what seems to be almost instinctual for most people to want children. I almost did not write that, because I find nothing wrong with women who don’t want children, I don’t think it is unnatural or anything to not want children.

I want to say yes because I don’t believe that anyone who can’t take care of another life should be having children. Not only would it be potentially stressful for both parents and child but it would also be another drain on society. Like @JLeslie said though, I find it very sad that preventing someone’s ability to have a child would be the best/safest option.

Edit: I have heard very sad cases of severley retarded people being raped. If a pregnancy were to be the result of this it would be even more traumatic.

I don’t really understand all of the angst when it comes to a parent-child relationship. If my children were so severely uncomprehending that even discussing the issue would be beyond their grasp, then it’s a simple no-brainer. I would definitely and without hesitation (and lovingly) sterilize a child as soon as it reached sexual maturity. I wouldn’t think twice about it.

If the child were not so severely handicapped, and able to function, however minimally, on his or her own, then I’d have a serious talk on the topic and make a strong (loving) suggestion that “you don’t want to have a child that may have more requirements than even you do, and even raising ‘an extremely capable’ child is pretty challenging”.

I repeat: I don’t think the decision belongs to anyone outside of the family, but I also recognize that not all families are like mine nor are all parents like me. Outside of “a family”, I don’t see a good way to handle this, though.