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Greater Access for Down Syndrome Information
July 18, 2014 12:10 PM   Subscribe

Pennsylvania Governor Tom Corbett is expected to sign Chloe's Law. Chloe's Law, or the Down Syndrome Prenatal Education Act, requires medical practitioners to provide up-to-date and accurate information about Down syndrome with the accompanying diagnosis. Similar laws were passed in Massachusetts and Kentucky. Why is this necessary? Ask a parent or two and you find out how most doctors aren't up to the task. Fortunately, there are parents who will help them out (if they would listen).
posted by plinth (91 comments total) 14 users marked this as a favorite

 
In the "two" link, the writer says "it may seem hopeless, but there will be no limits to what your child with Down syndrome can accomplish" and then goes on to list what seem to me to be pretty exceptional cases. What happens to the average person born with Down Syndrome in the modern era, in terms of independence?
posted by showbiz_liz at 12:28 PM on July 18 [1 favorite]


This is going to be a touchy-subject minefield, but the "Five Things new parts of Down syndrome children need to hear" leaves out something my wife dealt with:

What happens when you get old and die?

She worked at a group-home, which was one of the better ones in the country, and from what she has said, it's a sad-sad life these people lead. They don't understand that they are growing older, that their parents can not take care of them anymore, why they have to live with 3 other people that they hate in a house. Why a stranger has to physically brush their teeth, wipe their ass, and legally can't stop fights between individuals. Why they can't afford anything because after disability and state money goes to pay for rent, shampoo, soap they will literally have $10 for "entertainment/clothing".

Eventually, they become all alone in the world, with only strangers getting paid slightly above minimum wage doing anything for them.
posted by wcfields at 12:31 PM on July 18 [16 favorites]


In the "two" link...

Just for context, those two links are from LifeNews, which is a hardline anti-abortion site.
posted by griphus at 12:36 PM on July 18 [26 favorites]


People with Down Syndrome can be productive job-holders, but most employers discriminate. Jobs are a big part of feeling a sense of worth, as well as how we make friends, spend time, etc. I have a disabled sibling, his life is not fantastic, but he has a job and a home, and is a terrific guy. Behind the obvious signs of disability are some terrific (and not so much) people.
posted by theora55 at 12:37 PM on July 18 [2 favorites]


the "Five Things new parts of Down syndrome children need to hear" leaves out something my wife dealt with

It's from an antichoice website so I'm not super surprised at the lack of balanced reporting.
posted by elizardbits at 12:37 PM on July 18 [5 favorites]


Just for context, those two links are from LifeNews, which is a hardline anti-abortion site.

This whole escapade is creeping anti-abortionism. Having successfully negotiated through a nice set of TRAP laws the debate starts to turn towards the definition of "birth defects". Welcome to the next battleground in the further restriction of abortion.
posted by Talez at 12:41 PM on July 18 [11 favorites]


@elizardbits - I didn't check those details. Thanks for filling that info in.
FWIW - the easiest topics to start a conversation with another parent of a child with Down syndrome are "How's his/her heart?" (heart defects are 50-60%), "How's school going?" (followed by "why didn't you sue?"), and "How did you get the diagnosis?" (almost always a nightmare).
posted by plinth at 12:41 PM on July 18 [1 favorite]


Showbiz Liz, you could make the exact same statement about typical children. Most of them are not going to grow up to do anything extraordinary either!
posted by chaiminda at 12:41 PM on July 18 [3 favorites]


People with Down Syndrome can be productive job-holders, but most employers discriminate.

There are maybe a dozen or so people in my building on public assistance, and we get the Meals on Wheels or maybe God's Love We Deliver people in every morning to drop off meals. Their delivery teams consist of the driver/main delivery person and a disabled assistant, sometimes two, and it seems like a pretty great thing all around. I keep meaning to find out which organization they are so I can throw some funding their way.
posted by elizardbits at 12:43 PM on July 18 [5 favorites]


griphus: "Just for context, those two links are from LifeNews, which is a hardline anti-abortion site."

The ads on that site are giving me the heebie jeebies.
posted by Gordafarin at 12:48 PM on July 18


Showbiz Liz, you could make the exact same statement about typical children. Most of them are not going to grow up to do anything extraordinary either!

Yes, but most of them won't be dependent on you or government aid to survive for the rest of their lives, either. How many people with Down Syndrome can live independently? (Not rhetorical, I genuinely don't know the answer)
posted by showbiz_liz at 12:49 PM on July 18 [2 favorites]


Showbiz Liz, you could make the exact same statement about typical children. Most of them are not going to grow up to do anything extraordinary either!

Super-touchy issue as mentioned above but among the genuinely noteworthy accomplishments, it also lists things like being inducted into a high school honor society and opening a restaurant. While many people won't end up having done those things either, the fact that "climbing Mount Everest" and "owning a business" are considered equally exceptional is telling.
posted by griphus at 12:50 PM on July 18


(And I absolutely don't mean to imply that a person with Down's Syndrome being inducted into an honor society or opening a business isn't noteworthy within the context of their own lives.)
posted by griphus at 12:52 PM on July 18


This whole escapade is creeping anti-abortionism. Having successfully negotiated through a nice set of TRAP laws the debate starts to turn towards the definition of "birth defects". Welcome to the next battleground in the further restriction of abortion.

It is unfortunately true that anti-abortion activists are using this as a wedge issue. I say "unfortunate" because I believe that there is a strong disability rights argument for better cultural support for and understanding of the lives of mentally and physically disabled people.

I am extremely pro-choice, but I'm also pro-information. Heck, it seems to me like when any person finds out they're pregnant, they should "receive a full range of factual and supportive information through the Pennsylvania Department of Health."
posted by muddgirl at 12:55 PM on July 18 [22 favorites]


Does the Down Syndrome Prenatal Education Act include any education how the state will actively underfund special ed, cut any DD jobs/training programs, and leave them with so little money that their life is growing fat off of the tiny pittance of SNAP food and watching TV all day since they can not work.

Another thing, yes DD's can accomplish great things, but it comes at a major trade off, if they make too much money they can no longer get disability checks and government assistance (Medical especially).

Nike had a program in the early 2000's that hired many DD's in their factory doing who knows what. Point is, they got paid 40k+ a year. The DD's couldn't keep any of that money since if they had over a small sum in their bank their disability, SNAP, and group-housing would go away. So, they took trips to Japan and Hawaii! Unfortunately, the program lost funding, and now everyone that worked in it always wants to go on vacation again.

*DD = developmentally disabled (adults).
posted by wcfields at 12:56 PM on July 18 [3 favorites]


(I'm also pro- radically expanding government and community programs for both persons with disabilities and their families, which I agree is clearly an issue that is ignored by this kind of bill).
posted by muddgirl at 12:59 PM on July 18 [4 favorites]


I am extremely pro-choice, but I'm also pro-information. Heck, it seems to me like when any person finds out they're pregnant, they should "receive a full range of factual and supportive information through the Pennsylvania Department of Health."

If this information isn't a whitewashing of the realities if raising a special needs child and deception by omission I'll eat my right shoe.
posted by Talez at 1:05 PM on July 18


I want to apologize - I actually think it's funny because I don't read ads on sites. I completely ignored them. Maybe I've seen too many 'punch the monkey' ads.

Let me offer three conciliatory links without those kind of ads:
one
two
three

Oh heck, because I love you all, I'll throw in a fourth.

And if you ask me, I'll tell you what ours was like.
posted by plinth at 1:05 PM on July 18 [1 favorite]


wcfields: "Nike had a program in the early 2000's that hired many DD's in their factory doing who knows what."

I should point out this was in their prototype-factory in Portland, Oregon area.
posted by wcfields at 1:05 PM on July 18


The disability activist in me is thrilled that folks are pushing to get information about Down Syndrome out there that isn't totally cloaked in ableist language, that doesn't portray folks with cognitive challenges of all types as "those" people who ought to be pitied.

The pro-choice activist in me frankly terrified of this law.


What's going to happen, I bet, is that folks use parents like the ones in the articles above to shame poor parents, especially poor parents of color, who have kids with Down Syndrome. You were told about all these resources and all of these things that kids with Downs' can potentially do, so why can't your kid do X? Why hasn't your kid gotten all this therapy? Well, because this is Pennsylvania, where Tom Corbett is slashing holes in the social safety net left and right, with a special emphasis on shitting on Philadelphia. I can't help but notice that the little girl who this act is named after lives in a town where the median household income is $112,828. Get a town that wealthy and it's way more likely that the schools will have good supports for intellectual disabilities. Meanwhile, Philadelphia laid off 157 special ed aides just a few days ago and had the chutzpah to say that the lay-offs 'won't affect children.'

There seems to be a false assumption here that all mothers carrying children with Down Syndrome abort because they're ashamed of the disability, or because they assume their child won't be able to "do anything." That's ableist thinking, and I agree that that's something that needs to be challenged. However, that doesn't change the problem wherein the state of Pennsylvania doesn't want to provide fuck-all for children and adults with Downs' after they're born. Navigating the bureaucracies involved to get free or low-cost services for children (and adults!) with special needs is a constant, excruciating fight against bureaucracy and the fraying safety net. If a poor pregnant woman working a minimum wage job knows that she would love her child with Down Syndrome, but doesn't have the resources to fight that fight...well, shouldn't all the pro-lifers in our legislator be working on making those resources easier to access instead of shaming women for their choices?
posted by ActionPopulated at 1:05 PM on July 18 [69 favorites]


well, shouldn't all the pro-lifers in our legislator be working on making those resources easier to access instead of shaming women for their choices?

But shaming women for their choices is their goal.

I'm with mudpuppie: as a society, we need to provide the necessities of life--including, in your Constitution, the pursuit of happiness--to those who cannot provide for themselves, or whose support networks need a little help. Or anywhere in between.

You can measure a society by how it treats its weakest, etc. (I don't mean weak in an ableist sense. I mean weak in terms of social capital, access to resources, that sort of thing.)
posted by feckless fecal fear mongering at 1:12 PM on July 18 [7 favorites]


It's horrendous that the anti-abortion movement has co-opted this issue. It only takes away from the real debate that should happen surrounding lack of community support and puts parents or prospective parents in a much worse situation. It's such a thorny ethical issue and it isn't helped by moral ansolutists using it to push their own agendas at the cost of those in difficult situations.

I grew up with a man with Down's syndrome who went on to lead, perhaps not a exceptional life but a from what I know a decent life. He went to regular classes with a full time aid and eventually ended up with a job and a small business.

However, my mom was friends with his mom and I heard how incredibly hard it was for her as her husband left when he was born and she struggled with going back to work and taking care of my friend and the other children. It was also a huge concern about what would happen when she wasn't able to support him anymore because of age or death. That family was also incredibly lucky to live somewhere with halfway decent social services and to be economicly secure enough to plan for eventualities, not a kind of security everyone has.
posted by SpaceWarp13 at 1:13 PM on July 18 [1 favorite]


Plinth, can you please tell us what yours was like?
posted by anastasiav at 1:13 PM on July 18 [5 favorites]


wcfields: Nike had a program in the early 2000's that hired many DD's in their factory doing who knows what.

Walgreens has a new focus on disability inclusion, and here's a video on how they made a distribution center tailored to employees with disabilities. This Google cached article says
At its Anderson, South Carolina distribution center launched in 2007, 40% of their 700 team members have a disability. Disabilities that are visible and invisible, physical and cognitive. There are people with Down’s syndrome, developmental disabilities, autism, cerebral palsy, missing limbs, schizophrenia, and other special needs.
That's the first time I've seen some of the disabilities that are addressed at that facility actually listed out. Unfortunately, it took having one of the company's upper management folks have a kid with disabilities for the company to look at how it could make the workplace more inclusive.
posted by filthy light thief at 1:16 PM on July 18 [1 favorite]


With my wife's two pregnancies, we received the option for additional screening to tell us about any potential birth defects or disabilities with our potential children. We declined both times, and discussed how we both wanted to love and support whatever kind of kid she had. My heart goes out to families who get this information and realize it will be a financial burden on their family that they may not be able to handle.
posted by filthy light thief at 1:21 PM on July 18 [2 favorites]


Yes plinth, please -- and please don't take the direction this thread has gone personally if that's at all possible; these are hard things, and I have basically no idea how to feel about them.
posted by jamjam at 1:26 PM on July 18 [2 favorites]


It's horrendous that the anti-abortion movement has co-opted this issue. It only takes away from the real debate that should happen surrounding lack of community support and puts parents or prospective parents in a much worse situation. It's such a thorny ethical issue and it isn't helped by moral ansolutists using it to push their own agendas at the cost of those in difficult situations.

Yeah, this is definitely a place where if you are a leftie disability rights person (HI) you find yourself with some strange bedfellows. I basically come down on feeling like, one, I can acknowledge that each individual family should make their own decision about having or not having a child with Down syndrome while also pointing out that if every family or the vast majority of them start choosing to not have children with Down syndrome, that's a societal or structural issue. Two, more crassly, I feel like, if you are the type of person to abort an otherwise healthy fetus with Down syndrome, then you shouldn't be the parent of an actual living child with Down syndrome who relies on you and needs you to, you know, raise them.

I think Down syndrome is a flash point for a lot of us in disability activism because it's so easy to see it as a vision of the future for us, where people like us won't exist, which is just kind of upsetting and dehumanizing to contemplate even as a panicky thought experiment, and makes it hard to take into account all the various variables that exist to Down syndrome in particular. So people look at Down syndrome, which has very reliable pre-natal tests, and the majority of families who get a prenatal diagnosis don't continue the pregnancy, and get really fucking depressed.

In this particular case, my main issue is, one, as the population of developmentally disabled adults decreases, the political will to fund services for those people, which is already basically non-existent, decreases to zero, and that reduces the quality of life for actual, living people with developmental/intellectual disabilities. (Which could become you, at any moment: don't crash your car, folks.) And, two, it turns out people with Down syndrome have much greater intellectual capabilities than was previously believed, and interventions that help kids with dyslexia can also help kids with Down, etc. But we've just assumed/tolerated low achievement for people with Down as being genetic, when in fact a supportive environment can do a lot. So I sort of feel like as a society generally we come at Down syndrome in several wrong ways and I don't see eradicating Down syndrome in the same way as eradicating polio.

This is kind of jumbled because I'm about to get on the train, sorry everybody.
posted by Snarl Furillo at 1:38 PM on July 18 [17 favorites]


wcfields: What happens when you get old and die?


That's something I worry about for my own daughter, who's developmentally delayed. I have no good answer yet. It's a depressing subject.

I've been lucky to be able to save some money that might help her out a bit - various levels of government have promised that money put into a Registered Disability Savings Plan won't be counted against income for government support purposes, which helps Canadians avoid some of the problems that folks have mentioned above - but how do I find a good advocate and friend for her, someone who won't just spend the money on themself? Someone who values her for her complexity and curiosity and activity and humanity?

I don't know.
posted by clawsoon at 1:40 PM on July 18 [4 favorites]


Yeah, this is definitely a place where if you are a leftie disability rights person (HI) you find yourself with some strange bedfellows.

I'm left. I grew up in a strong disability rights family with an aunt who works in the disability assistance area that constantly drummed into us and exposed us to people in an effort to get us to recognize these are normal people just with different problems to what we'd normally expect.

But the way I see it this isn't about disability advocacy at all. This is about abortion plain and simple. If they were serious about helping people with special needs they'd stop ripping the guts out of the funding that helps them.
posted by Talez at 1:46 PM on July 18 [12 favorites]


One of my uncles, born in the early 1940's, has Down syndrome.
The powers that be pressured my grandparents to institutionalize him.
They took one look at the place and decided he belonged at home.

He worked his entire adult life - of course now he is retired. I don't know him very well, we live on opposite coasts.
What I do know is he lives with an underlying frustration and despair that he is not recognized as an adult, capable of making, mostly, his own way in life.

I'm glad to see the situation has changed for the better for people with Down syndrome.

'Retard' was, and still is, unwelcome as racial epithets in my household.
posted by Pudhoho at 1:50 PM on July 18 [1 favorite]


Also - and this might sound horrible - I sometimes find myself wishing that there were more Down's Syndrome kids and less Autism kids in my daughter's classes. With reasonably good parenting, they're often friendly, open, emotionally intelligent children who can be a real joy to interact with.

(Except maybe that one Down's Syndrome girl who bossed my girl around in kindergarten. She used her emotional intelligence to dominate and manipulate. Even that, though, was a good lesson in human interaction, something that Autistic kids - and, again, I apologize - don't provide as often.)
posted by clawsoon at 1:52 PM on July 18 [1 favorite]


One other random note about Down's Syndrome: In later life, the brains of many people with Down's Syndrome are affected by the same beta-amyloid protein plaques that cause Alzheimer's, with similar debilitating effects. The connection is chromosome 21, which contains the beta amyloid gene and is the chromosome that's triplicated in Down's Syndrome.

As a result, advances in Alzheimer's treatment could potentially have a very positive impact on the later lives of many people with Down's Syndrome.
posted by clawsoon at 1:56 PM on July 18 [5 favorites]


About 30 years ago there was the documentary Best Boy that dealt with the aging parents of a 52 year old DD person. No spoilers here. The parents die and he goes off to live in a group home...This is usually what happens with DD adults. There is no silver lining. Hopefully they get into one of the better group homes, but many are fraught with abusive caretakers.
posted by Gungho at 2:03 PM on July 18 [1 favorite]


I don't understand this claim that this is "co-opting" of disability rights by anti-abortion advocates. There is diversity among people who consider themselves pro-life. Certainly you have your dim-witted fundamentalists who hate women and want to punish them for being sluts, and who oppose all "gub'mint" assistance for the undeserving - they obviously have no credibility. But it's insulting and wrong to assume that all pro-life people fall into that camp. A consistent life ethic means that how we treat the weakest, most disenfranchised among us demonstrates our moral worth -- that includes the unborn AS WELL AS disabled, elderly, women, poor, minority, death row prisoners, etc. There are pro-life people (they tend to be liberal democrats) who believe all humans should be treated with dignity. There are pro-life people who aren't hypocrites, and who aren't "strange bedfellows" with disability advocates or other liberals - they are very natural bedfellows because they have the same beliefs about the intrinsic worth of people notwithstanding their gender, sexual orientation, race, abilities, social class, etc...
posted by Mallenroh at 2:27 PM on July 18 [9 favorites]


Snarl Furillo: Yeah, this is definitely a place where if you are a leftie disability rights person (HI) you find yourself with some strange bedfellows.

Not so strange, necessarily. There's a powerful impetus in some core Christian teachings to protect the weakest and most powerless. It's in constant conflict with other core Christian teachings (or at least in conflict with religious social structures), but it's there.

It's when that protective impetus becomes a harsh legal formalism that the results get horrific. The foundling homes of the industrial revolution, for example, came from the same place that anti-choice laws do: The weakest must be protected by force. Not by supporting the people who care for them, but by punishing the people who should take care of them but can't.

That's the real problem with anti-abortion laws, I think. In some ways it's tempting to say, sure, I'll support an anti-abortion law in exchange for fully-funded childcare and disability support. If the childcare and disability support goes away, the anti-abortion law goes away, too. That might be a politically ridiculous idea, but - and feel free to disagree with me here - I don't feel that it's morally ridiculous.

What is morally ridiculous is to demand that people who can't reasonably support their children - whether it's because of their own situation or whether it's because their child has a disability - must do so or face being punished.

Two, more crassly, I feel like, if you are the type of person to abort an otherwise healthy fetus with Down syndrome, then you shouldn't be the parent of an actual living child with Down syndrome who relies on you and needs you to, you know, raise them.

I completely disagree. Many parents are told horror stories by their doctors about how awful their lives will be if they have a child with Down's Syndrome. They're not basing their decisions on the love and care that they'd be capable of as parents.
posted by clawsoon at 2:38 PM on July 18 [3 favorites]


Mallenroh: Certainly you have your dim-witted fundamentalists who hate women and want to punish them for being sluts, and who oppose all "gub'mint" assistance for the undeserving - they obviously have no credibility. But it's insulting and wrong to assume that all pro-life people fall into that camp.

Please point to where in this thread anyone has said or implied that all pro-life people fall into that camp. The problem here is Corbett's complete lack of credibility on the issue of doing right by disabled people and their families. Meanwhile, we know he's a rabid anti-choice zealot who probably knows his days are numbered in PA politics. You can choose to believe that he's doing this for the right reasons, but you'd be doing so in spite of a lot of evidence that suggests he's just using this to burnish his anti-abortion credentials heading into a very difficult election with a Dick Cheney-esque approval rating.
posted by tonycpsu at 2:40 PM on July 18 [2 favorites]


Prominent Penn State English Professor Michael Berube has written extensively over the years about his son Jamie, who has Down's Syndrome. Jamie has two college professor parents and has had amazing opportunities at academic enrichment, including a program at Penn State for college-aged folks with DD. Now, Jamie needs a job. And his struggles to find his way as an adult with DD are sadly typical of the way US society works.
posted by hydropsyche at 3:00 PM on July 18 [11 favorites]


This seems to come back to something that is hard for people who are against abortion to understand. I have a family friend with Down's. He is a great person. I am glad to have had him in my life. But his disability is a disability, and it is a thing that has worn on his parents and community for decades, trying to make sure that he has a decent life.

Women can and do choose to terminate just because it's an inconvenient time to have an entirely healthy child, and that doesn't imply that they wouldn't care for a non-disabled child under other circumstances. I can both love this man I grew up with for the person he is and weep when I find out an internet acquaintance just got the diagnosis and had to make that decision. There are many things one can survive that one would still choose not to endure if given a choice. The decision to continue a pregnancy or not is not a proxy for one's feelings about actual living children and adults with developmental disabilities any more than it is a proxy for one's feelings about actual living children and adults generally.

Chloe seems like a great kid, but her family is using her to further a religious agenda and is not shy about this, and there's a reason she's met all these politicians who all happen to be famous Republicans.
posted by Sequence at 3:34 PM on July 18 [27 favorites]


hydropsyche, that article is fantastic. Thank you for linking to it.
posted by insectosaurus at 3:43 PM on July 18


Where to start?

I'm going to go long-form, but that's historically my style.

Spoiler/tl;dr: it stunk.

We are, for the most part products of our families and our surrounding communities and their amalgamated cultural values. When I was a kid in the 70's, you didn't see too many people with Down syndrome in my community. I suspect that many were put into institutions. It took too long to shut down those hellholes. I knew a kid in 6th grade who had two younger sisters, both with Down syndrome. They did not go to our school. I don't know where they went. I just remember seeing them one day when I passed by his house on the way home from school. They were alien - in the uncanny valley. Maybe they rode the short bus and went to a special school. In 9th grade, I remember a guy on the basketball team singing "Mongoloid" by Devo. I knew, and I don't know how, that this was about Down syndrome. I didn't find out until much later that this was half of the term that Langdon Down used to apply to his patients. Mongoloid Idiot. The name from their general appearance due to epicanthic folds and idiot more from the notion of a strictly working class person. Down had figured out that if you educate and care for people with Down syndrome, they thrive. But I'm going on.

We were both working in a school. I was technology director and therefore also did all the IT. The server room was a side room only accessible by going through a classroom that was rented out by a county group that educated kids with severe disabilities. They had a boy named Kenny who was decidedly low functioning. He, at 13, was still wearing diapers and hardly spoke. Around week 20, I was driving us to work and in backing out of our driveway, I got rear-ended. They did an emergency ultrasound to check on her (our first) and the tech noted a kyphosis in the fetus. A what? A slight hunching. I'm going to have a hunchback? Cool! I had no clue. Nor did the tech or they would've ordered an amnio or nuchal translucency test. Hindsight, as always is 20/20.

When Mrs. Plinth was getting close to term, I suggested that since she had lunchroom duty, that it would be totally worth popping a water balloon between her knees and taking a long weekend. The due date was April 2nd, so why not call it the most inspired April Fool's day prank.

Alice was early - 1 day full term. We had gone home from work and contractions started. Mrs. Plinth was having trouble sleeping, so I excused myself to the couch figuring that I needed to be more clear headed to drive in. Around 3 we went in and got checked in. The facility was nice and we had a birth plan and a cord blood collection kit. Things didn't progress. They had a whirlpool tub and Mrs. Plinth tried to relax in the that while I promptly fell asleep sitting on the tile floor. If she could have reached me, she would have belted me.

Things were still not progressing. The doctors monitored fetal heart rate and it wasn't looking good. They decided that we would steal the team for a scheduled C section (yoink!) and they prepped her. I was disappointed. I had had training in emergency child birth and I wanted to deliver my child. They brought me scrubs and I changed and shot a mirror selfie. I tried hard not to think about how this kind of event in the not-too-distant-past would often lead to the deaths of either or both mother and child. The picture shows otherwise. A few days earlier, we had seen the movie "Catch Me If You Can", a story of Frank Abignale who was a professional forger and job chameleon. I told Mrs. Plinth that I promised I would not go wandering off in the hospital and start diagnosing patients. This was not as comforting as I had intended because up until that moment, she had never thought that was on the table (trivia: I successfully diagnosed one of my own doctors with Bell's Palsy).

They wheeled her in to the OR and I sat next to her head behind the curtain and joked with the anesthesiologist. They started cutting her open and I wanted so badly to stand up and watch. One in my position does not often have the opportunity to see inside a human body, living or otherwise. Still, the rational side kicked in - at that moment there were two patients, even though I'm not squeamish, there was no need to make a surprise third patient. The room contained, us, the anesthesiologist, the surgeon, Mrs. Plinth's GP, Mrs. Plinth's midwife, and at least two other nurses.

They pulled out my daughter and started to run through the usual things: goop in the eyes, goop out of the nose and mouth, run the Apgar. But then the tone in the room changed. In watching what was going on I could tell that everyone was working. They weren't just going through rote. All conversation stopped and they were speaking in curt professional words. They were also using an ambubag on my daughter and one doctor was doing chest compressions. This wasn't good. They wrapped her up and were ready to put her in a very serious incubator with heart monitors before I stopped them and made them show my daughter to my wife, who had not yet seen her own daughter and was incapacitated with her uterus resting inside out and being scraped clean.

In recovery, there was a lot of hushed tones outside our room. We waited. And waited. At one point, the entire team came in to see us. This did not look good. It was a smallish room and now there were 6 other people in there with us. The surgeon said, "Mr. and Mrs. Plinth, your daughter had seizures when she was born. We think she had a stroke and we think she had Down syndrome. We need to transfer her to Hospital B, which has a NICU."

We both wept. Wailing. Gnashing of teeth. Worst possible news delivered brusquely by a team that didn't know how to do any different. No it got worse. Mrs. Plinth's GP, who several weeks earlier offered to be Alice's pediatrician, retracted her offer. She didn't think she was up to the task of being a doctor for a child with special needs. I lost all respect for the woman in an instant.

It got worse. You fill out all this paperwork, we're sending your daughter to the NICU, we're keeping your wife here. I took my second step on the road to being an advocate and corrected them. No, in fact, they were going to transfer both them. Mrs. Plinth was in recovery, shouldn't she be in a place where she can nurse her child?

I found a quiet place to call family and friends to let them know what we knew. I wasn't supposed to use a cell phone in the hospital, but fuck you. The midwife stopped by and was ready to chew me out, but thought better of it and asked me if I needed anything. I said I needed a hug. She obliged and I wept. My opinion of her skyrocketed.

It got worse. They ran genetic tests while they determined that my daughter had a stroke and now had pneumonia. They sat us in a dark office in the basement and confirmed that Alice had Down syndrome in all cells tested (not mosaicism, which we were hoping for). The rep handed us a sheet of out-of-date information. The rep couldn't answer our questions about the future. She was useless.

The end.

So yeah, I'm kinda happy when a state decides to require up-to-date information. Happier when a state funds early intervention - EI is a numbers game. EI focused in the first 3 years makes it far more likely that a child with disabilities with grow up to be much more independent as an adult and therefore cheaper to the state.

Still, hate to see that PA is being consistent with the general concensus of wanting a child but offering as little support as possible after.
posted by plinth at 3:58 PM on July 18 [34 favorites]


plinth, I can't possibly favorite such an anguished tale, but I flagged your comment as fantastic.
posted by KathrynT at 4:04 PM on July 18


Also - and this might sound horrible - I sometimes find myself wishing that there were more Down's Syndrome kids and less Autism kids in my daughter's classes. With reasonably good parenting, they're often friendly, open, emotionally intelligent children who can be a real joy to interact with.

You're right - that does sound horrible.

Autism mom here. So sorry that your perfect child's life is sullied by contact with a child like mine.

Nevermind the fact that, despite his imperfect social skills, he is often the first one to go comfort a distressed classmate. Or that the intricate, detailed items he crafts out of paper and gives as gifts - cars, Speedy Gonzales, skeletons, bottles of crazy glue, box of matches - are prized by his teachers and classmates. Or the fact that if you've met one autistic child you've met ONE autistic child.

Yes ... better quarantine him and his ilk quickly lest the autism cooties infect all the precious perfect children who are indisputably better than them, amirite?
posted by echolalia67 at 5:25 PM on July 18 [5 favorites]


However, “the more I interact with someone who has Down syndrome, the more I think I am the one who has one chromosome less, instead of them having one extra,” said Dr. Vellody. “They tend to be loving, caring and forgiving — features we are missing a lot in general society."

This is come creepy, creepy shit.
posted by save alive nothing that breatheth at 5:29 PM on July 18


Here's a video of the distribution center in action, and an interview with some of the folks who work there, as part of a series of freight/logistics videos. Some people even moved to Anderson, S.C. to work there.
posted by filthy light thief at 6:51 PM on July 18


Also - and this might sound horrible - I sometimes find myself wishing that there were more Down's Syndrome kids and less Autism kids in my daughter's classes. With reasonably good parenting, they're often friendly, open, emotionally intelligent children who can be a real joy to interact with.

The other students in your daughter's class aren't there solely for *her* edification, though. They're also there to learn. Including any kids who are there who have disabilities; they, too, are there to learn and not for the other students' edification (and vice versa). Kids do learn a lot from each other and diversity (on any/many axis) can be great in terms of enhancing a learning environment -- but fellow students aren't there as school supplies or for "teachable moments," you know?

What makes your statement sound "horrible," to my ears, is that it comes off as though you see the students who have disabilities as there under some sort of quota system. Or as though you wish you could mix or match or go shopping or like somebody picked these kids off a menu. Like, "my daughter's classroom has [autistic kids], but I'd prefer if it had [kids with Down Syndrome] instead." It's dehumanizing.

That's basically what I find distasteful about the "she's so inspiring!!1!" trope and specifically in how Chloe is being positioned (by her parents and by politicians) to act as a walking, talking, anti-eugenics argument in an effort to outlaw abortion, in general, though -- to me, it's dehumanizing to the people (with disabilities) involved to treat them as though they're just tools or metaphors for others to use for their own edification or for their own ends.

Not that I don't have the strong instinctive repulsion and fear that Snarl Furillo talks about when it comes to any whiff of eugenics, or isolation/segregation, or imprisonment. I really, really do. And I guess a lot of people do, which is why using Chloe and using people with Down Syndrome in general as a synecdoche for the "liberal" side of the anti-abortion movement is so successful and so difficult to counter. But I think it's ultimately a manipulative rhetorical tactic that's more about fear-mongering than anti-fascism.

Plus, I think that the anti-abortion movements' reliance on language and imagery evocative of the ~Inspirational Cripple~ trope in order to create that synecdoche is also dehumanizing and disrespectful and not great for disability rights. But that could just be my anti anti-abortion-movements bias talking!
posted by rue72 at 6:59 PM on July 18 [15 favorites]


echolalia67: You're right - that does sound horrible.

Autism mom here. So sorry that your perfect child's life is sullied by contact with a child like mine.

Nevermind the fact that, despite his imperfect social skills, he is often the first one to go comfort a distressed classmate. Or that the intricate, detailed items he crafts out of paper and gives as gifts - cars, Speedy Gonzales, skeletons, bottles of crazy glue, box of matches - are prized by his teachers and classmates. Or the fact that if you've met one autistic child you've met ONE autistic child.

Yes ... better quarantine him and his ilk quickly lest the autism cooties infect all the precious perfect children who are indisputably better than them, amirite?


You're making a completely fair criticism. I'm not going to defend those occasional wishes of mine, since they're not really defensible.

My (indefensible) prejudices, FWIW, are based on the forty or fifty autistic classmates that my daughter has had over the years, and four or five Down's classmates. If anything, I'm probably making the mistake of romanticizing the Down's kids, since I've met so few of them, comparatively. And it's also the case that the range of autistic kids I've met is mostly limited to the moderate to severe portion of the spectrum; the kind of social and motor skills that your boy has are mostly well out of my daughter and her classmates' range. In that setting, the friendly smile of a Down's kid can come like a revelation, and lead to the sorts of indefensible thoughts that I'm reporting.
posted by clawsoon at 9:01 PM on July 18 [1 favorite]


Fair enough, clawsoon.

I think what makes it work in our situation is that my son's aide works with the other children as needed, so all the children benefit from having an extra adult in the classroom. The therapeutic play groups have helped him to understand social niceties as well as an opportunity to mentor children who are even less socially skilled than he is.

Placement can be tough - on one hand being placed in a special day class with children on the more severe end of the spectrum causes my son to regress to a non-verbal state ; on the other hand, he struggles to express himself as fluidly as the other children and as a result can get very frustrated. There is no "sweet spot" classroom in my local school system.

I wish we lived in a country that invested more money in elementary school education. I don't think any child is particularly well served by large classroom sizes or cookie cutter lesson plans. I think that all children could benefit from classes that provide a healthy sensory diet that syncs up with the book learnin'.

I just never want it to go back to what it was like when I was a kid - DD kids who would be my neighbors and playmates only to disappear into some institution once they got to school age, never to be seen again. As an adult, I've worked with of DD individuals who grew up in the institutions. It's heartbreaking to see what separation from family and community does to an individual.
posted by echolalia67 at 9:32 PM on July 18 [3 favorites]


rue72: What makes your statement sound "horrible," to my ears, is that it comes off as though you see the students who have disabilities as there under some sort of quota system. Or as though you wish you could mix or match or go shopping or like somebody picked these kids off a menu. Like, "my daughter's classroom has [autistic kids], but I'd prefer if it had [kids with Down Syndrome] instead." It's dehumanizing.

They are there under a sort of quota system, though, given the early screening available for Down's and the lack of such for autism. Somebody did pick these kids off a menu - or the converse of that, rather, where a huge number of kids with Down's were eliminated before they could reach any classrooms.

I'm not defending my occasional horrid thoughts, just reporting them. It's thinking about the quota system that does exist, the one that eliminates Down's kids, that sometimes leads to those thoughts. (The other thing that leads to them - again, indefensibly - is kids with severe behavioural issues. When my daughter's teacher, who is an experienced and confident special-needs teacher, speaks with evident fear about the boy who's coming into my daughter's class next year, it'll sometimes lead to the "dammit, I wish there were more Down's kids around" thoughts, as little sense as that might make. I know it's not fair to that boy, either.) You're right that it dehumanizes Down's kids; not only them, but their would-have-been parents, too, and, as echolalia67 points out, kids with autism.

That's basically what I find distasteful about the "she's so inspiring!!1!" trope and specifically in how Chloe is being positioned (by her parents and by politicians) to act as a walking, talking, anti-eugenics argument in an effort to outlaw abortion, in general, though -- to me, it's dehumanizing to the people (with disabilities) involved to treat them as though they're just tools or metaphors for others to use for their own edification or for their own ends.

I'm not familiar with the specific political situation - it might be the case that the campaign you're talking about would turn my stomach, too - but I do feel compelled to make a quixotic defense of politics that's "dehumanizing" in this way. It is, simply, the only way to do practical, results-oriented politics for something like this. Any politics in support of a group that doesn't get listened to in its own voice gets done this way, whether it's the defense of death-row inmates in a campaign against capital punishment, or undocumented migrants in a campaign against deportation, or famine victims in an anti-famine fundraiser, or sick kids at a Sick Kids hospital.

You pick the most sympathetic and emotionally compelling representative: The innocent who was framed before execution, the upstanding community member who didn't get his papers but has raised a family and started a business and is liked by everybody in town, the dying child.

If there's another side to the issue, they pick the opposite: The serial killer who's proud of it and would do it again, the violent druglord who crosses the border with impunity.

That just happens to be the most effective way to make political sausage. If you want to oppose an anti-abortion campaign, your only practical choice is to find victims of anti-abortion laws that are as emotionally compelling as Chloe and "dehumanize" them in the same way, by telling their story as if they're representative. You might find that distasteful, but it's what gets results.
posted by clawsoon at 10:29 PM on July 18 [1 favorite]


echolalia67: I just never want it to go back to what it was like when I was a kid - DD kids who would be my neighbors and playmates only to disappear into some institution once they got to school age, never to be seen again.

As difficult as things can be sometimes, and as irrational and unfair as our thoughts can get - don't even ask about the occasional pang of jealousy I get when I find out about a relatively high-functioning child getting a whole aide all to themselves :-) - I do have to admit that we live in one of the best times in history for people with special needs. It's nowhere near perfect, but history has horrors that I'm glad my daughter doesn't have to face. I'm grateful to be living now, and here. (And then I remind myself that my daughter does get an aide all to herself for summer camp, even if she doesn't get one at school, and that reminds me to not to be such a selfish asshole.)
posted by clawsoon at 11:03 PM on July 18 [1 favorite]


If you want to oppose an anti-abortion campaign, your only practical choice is to find victims of anti-abortion laws that are as emotionally compelling as Chloe and "dehumanize" them in the same way, by telling their story as if they're representative. You might find that distasteful, but it's what gets results.

It's fear-mongering and sentimentalism, combined with reducing an already-oppressed group to a synecdoche and re-enforcing stereotypes. I know it works, Republicans did it infamously well back in the nineties with the "Welfare Queen" trope, and were basically successful in killing welfare that way (well, along with other tactics, but that was a major one).

I personally don't think that the end justifies the means. And not just because I'm pro-choice, also because I think that arguing that Supreme Court decisions should be whittled away based on sentimentalism is wrong and that using human beings as pawns because it's convenient or preys on people's emotions is wrong and that attempting to to weaponize a community's ideals (such as the disability rights community's strong anti-eugenics stance) against them is wrong, and knowingly doing all those things because it's efficient/convenient/whatever is...distasteful *at best.* At best.

Any politics in support of a group that doesn't get listened to in its own voice gets done this way, whether it's the defense of death-row inmates in a campaign against capital punishment, or undocumented migrants in a campaign against deportation, or famine victims in an anti-famine fundraiser, or sick kids at a Sick Kids hospital.

That kind of dehumanization and silencing is something that rights groups *specifically* fight against.

That kind of dehumanization and silencing of the people with the greatest stake in the law or funding, and the way that it reinforces power hierarchies that leave those (traditionally disempowered) "stakeholders" treated as sub-human, victimized, and voiceless, is a problem with the US incarceration system and immigration system and in NGOs and aide to "third world" countries and something that prisoners and immigrants and the citizens/residents of those countries and their allies repeatedly speak out against.

Creating a pitiable but voiceless Victim and then dictating which rights the group she ~represents~ should receive, if any, is a rhetorical strategy that does get used (it's gotten used to create racial boogeyman for sure, but it's also been infamously used before in regard to disability -- remember "three generations of imbeciles are enough"?). In some ways the structure of the Supreme Court and the US legal system, and the way it creates precedent through landmark cases, even encourages the use of that rhetorical strategy. But I don't think that it's a rhetorical strategy that *should* get used in politics or policy making (as opposed to court cases, where it's basically unavoidable). And that's a pretty common stance and a fundamental principle in many rights campaigns for disenfranchised groups, it's not some extremist outlier thing on my part.

Deciding on what rights a group gets or not, especially when based on preconceptions of that group rather than extending ideals such as liberty and equality to include everyone, is paternalism. Some people believe in paternalism, too. But I personally don't, and when it comes to some issues, such as women's right to choose, and actually, funding for disability support programs and SSI, I think paternalistic policies are actually unconstitutional (in the US). (I think that paternalistic policies often edge very close and even overstep the bounds of the fourteenth amendment).

It's thinking about the quota system that does exist, the one that eliminates Down's kids, that sometimes leads to those thoughts. (The other thing that leads to them - again, indefensibly - is kids with severe behavioural issues. When my daughter's teacher, who is an experienced and confident special-needs teacher, speaks with evident fear about the boy who's coming into my daughter's class next year, it'll sometimes lead to the "dammit, I wish there were more Down's kids around" thoughts, as little sense as that might make. I know it's not fair to that boy, either.) You're right that it dehumanizes Down's kids; not only them, but their would-have-been parents, too, and, as echolalia67 points out, kids with autism.

I don't understand, because even if lots more children with Down Syndrome had been born, all the children who have been born and have other disabilities still would have been born as well. There's not *actually* a quota system on "total number of people with/who will have disabilities being born." So maybe without prenatal screening tests for Down Syndrome there would be more children with Down Syndrome, but there would be just as many children with autism as there are now. What it sounds like you actually want is a screening test for *autism,* so that so many children with autism aren't born and put into class with your daughter. Or a screening test for kids with severe behavior problems, maybe. Which is an appalling sentiment, and I get that you're not defending it or denying that it's appalling, but even just reiterating it is...confusing. I don't understand what you're trying to say except that the kids with severe behavioral problems are freaking you out or that you wish they were more emotionally sophisticated or something?

I've taught special needs kids -- both mainstreamed and in classes that were just for kids with special needs -- and I know what you're talking about when you say that some kids can be frightening. Some kids are! Some people are! A teenaged or early-twenties man who has serious communication problems and a tendency toward large-scale, violent meltdowns caused by sometimes difficult-to-predict stimuli can *definitely* be frightening. A couple kids I've taught have fallen into that category, and yeah, I wasn't always comfortable around them. But I don't know what that has to do with people with Down Syndrome being born or not?
posted by rue72 at 11:41 PM on July 18 [5 favorites]


If anything, I'm probably making the mistake of romanticizing the Down's kids,

Sadly, this is a very common phenomenon, and good on you for recognising it. There's something about Down's kids that compels people to view them as - what's the term - "sacred fools" or something? That there's something quintessentially angelic about them, or they can see through to what really matters, or something. You often hear "they're happy all the time", or variants thereof.

I do not have anyone with Down's in my family, however, in my years as a childcarer, I spent several as the 1-1 carer for a little girl, also called Alice, who had Down's. And another girl named Emmy, who had Down's, and was deaf.

That whole sacred fool malarkey is terribly simplistic, and ableist, from my point of view. People with Down's, in my experience, anyway, are not "happy all the time", they experience a wide range of emotions like anyone else, and one of the premier ones is unfortunately frustration. Frustration at the limitations - cognitive and physical - their disability confines them with. Frustration when their desires are thwarted and they cannot understand why, or even understand their desires in the first place. Frustration at the condescension they get from people, the way they are ignored or treated like a bright but undiscplined dog from people.

I find the whole discourse does a huge disservice to: 1) people with Down's, 2) what Down's actually is and how it works, and 3) the parents of kids with Down's who have a blisteringly hard road to walk down with a murky and uncertain destination at the end of it, and many interventions along the way.

It's such a simple view, but it obscures so many complexities and struggles and the need for support and advocacy. I feel like it tries to mask what is a very challenging disability which needs an effective matrix of support structures to ensure good outcomes - structures that are all too lacking in most places in the world, including of course America.

Having worked with these kids, and their families, for years. I would never begrudge anyone the choice to terminate. Would that our society provided better support for the disabled, including those with Down's. But don't judge someone till you've walked a mile in their moccasins. It's a very hard decision, and speaking completely frankly, I've known parents who regretted their choice, not to terminate. The sense of shame and guilt and horror they felt about having this feeling - however fleeting, or permanent - is horrible to witness, and society bears the blame for it.

The perception that people with Down's Syndrome are puckish cherubs is a contributor to those feelings. The reality is far more complex and nuanced. It can be a rewarding, unique, love-filled reality, too. But it's rewarding like running a marathon, not eating a chocolate cake.
posted by smoke at 3:37 AM on July 19 [16 favorites]


I want to add, in case it's not clear, that I am not trying to paint the life of someone with Down's syndrome, or their families', as a tortuous agony of non-stop misery. It's not, not at all. There can be plenty of joy, and love, and all the positive emotions and experiences that people and families of all descriptions have. The corrective to "they're happy all the time" is not "they're miserable all the time." Both miss the point.

I do hope I have not given anyone the impression that's what I was trying to say. But it's very hard, and challenging, and I think the 'happy' narrative glosses over that.
posted by smoke at 3:41 AM on July 19 [3 favorites]


But it's rewarding like running a marathon, not eating a chocolate cake.
No, sometimes it's rewarding like eating chocolate cake.

Or as in today, it was rewarding like eating chocolate cake while running a marathon (except without the puking) when my daughter only needed a short brief assist in taking a bath and did the rest in an effective and timely manner. That's been a 6 year project in the making.

Then she came in to show off her outfit. I don't particularly care for the socks, but you pick your battles and this one is not worth fighting.

*edit* I should also point out that I don't pose her like this. She has picked up that this is a "fashion pose" for showing off an outfit. Go figure.
posted by plinth at 6:10 AM on July 19 [13 favorites]


As noted upthread a bit, Corbett has famously starved Philadelphia schools to the extent a generation of Philly children are truly fucked. No libraries, few nurses, and fewer special ed classroom assistants. The man is a fucker, and I don't trust him wanting to do shit for disabled children unless it somehow aligns with his tea party ethos.
posted by angrycat at 7:26 AM on July 19 [11 favorites]


rue72: It's fear-mongering and sentimentalism, combined with reducing an already-oppressed group to a synecdoche and re-enforcing stereotypes. I know it works, Republicans did it infamously well back in the nineties with the "Welfare Queen" trope, and were basically successful in killing welfare that way (well, along with other tactics, but that was a major one).

I personally don't think that the end justifies the means.


I respect that. But as personally ambivalent as I am about "amazing cripple!" stories - the "Extraordinary People With Disabilities" book I was given a few years ago remains unopened - I can't deny the positive political impact of Helen Keller's story, or the "Corky" character on "Life Goes On". Sentimentalizing a group based on one or two individuals is paternalistic, like you say, no doubt about it. But - and maybe my view on this is too limited - it's what works. I'd like if people in dominant groups responded to abstract notions of human rights when thinking politically about a disadvantaged group, but they rarely do. They respond to Jackie Robinson's story, or Anne Frank's, or Amelia Earhart's, or Helen Keller's.

My worry would be that if rights activists are abandoning the "Chicken Soup for the Nation's Soul" approach in favour of the abstract "extending ideals such as liberty and equality to include everyone" approach, you'll end up losing the rights you're trying to win. The approach is impeccably morally correct, but it approaches the rest of society in a cold, legalistic way, and it seems likely to get a cold, calculating response.

I could be completely wrong about this.

I don't understand what you're trying to say except that the kids with severe behavioral problems are freaking you out or that you wish they were more emotionally sophisticated or something? .... But I don't know what that has to do with people with Down Syndrome being born or not?

It comes from wanting positive experiences for my daughter - what parent doesn't want that? - combined with the naive assumption that more Down's kids would mean more special needs classrooms, which (all else being equal) would mean a lower chance that she'd end up sharing a classroom with a kid with severe behavioural issues, which would mean she'd be less likely to be spending her days with stressed out teachers and less likely to pick up destructive behavioural habits.

It's purely selfish, and it's based on a naive premise (more special needs kids == more special needs classrooms? hah!), and you're probably right that it's not necessarily worth reiterating.

Perhaps what I need to bring me around is a sappily sentimental extraordinary story about a kid with behavioural issues...
posted by clawsoon at 7:48 AM on July 19 [1 favorite]


plinth: It got worse. They ran genetic tests while they determined that my daughter had a stroke and now had pneumonia. They sat us in a dark office in the basement and confirmed that Alice had Down syndrome in all cells tested (not mosaicism, which we were hoping for). The rep handed us a sheet of out-of-date information. The rep couldn't answer our questions about the future. She was useless.

I'm still not quite sure what to think of my own daughter's birth experience. (Brain injury and DD; I hope you don't mind the derail away from Down's.) After the brain scans, they told us that she would probably be a vegetable - they may have even used that word - and offered palliative care as an option. In other words, give her pain killers, don't feed her, and let her die.

A post-birth abortion, if you will.

They also offered to support her whatever decision we made, and they were true to that. She has received excellent medical support, therapy and schooling.

And I very much like your "eating chocolate cake in the middle of a marathon" analogy. Sometimes the chocolate cake will be the oddest thing, like when my daughter decided she knew how to cook eggs while I was in the bathroom. Half a carton in the pan, half a carton on the floor. (No ability to turn on the stove, thankfully.) Parental pride at her ambition and determination, despite the giant mess.
posted by clawsoon at 8:45 AM on July 19


Eventually, they become all alone in the world, with only strangers getting paid slightly above minimum wage doing anything for them. Living with supports in a decent group home and having an independent life in the community can be a fulfilling life. While parents often die first, this does not somehow inevitably mean that the adult child with disabilities is left alone. (And lots of people are alone, with and without intellectual disabilities.) The goal is for people to have relationships out in the world, beyond two parents, such as with siblings, friends, neighbors, cousins, staff, etc. Which is why supports in the community are so important. Whether or not the law described is a good idea, which is another topic (and FWIW I am a former national NARAL staff member and current supporter), I think that dire/absolutist statements about people with ID/DD are part of the problem of disability discrimination in the US (see, e.g., Day of Remembrance), and that information, networks, advocacy and supports are part of the solution.
posted by ClaudiaCenter at 12:48 PM on July 19 [5 favorites]


Yes, but most of them won't be dependent on you or government aid to survive for the rest of their lives, either. How many people with Down Syndrome can live independently? (Not rhetorical, I genuinely don't know the answer) We're all interdependent -- none of us is an island. We all benefit from some government aid and programs at some point. Do you mean, how many people with DS pay their own way? Well, given the high unemployment rates for persons with significant disabilities, it's probably not a high percentage. But I don't think it is a good question.
posted by ClaudiaCenter at 1:03 PM on July 19 [3 favorites]


Perhaps what I need to bring me around is a sappily sentimental extraordinary story about a kid with behavioural issues...

My kid is autistic, with a very high IQ, and some severely challenging behaviors, like the kind that result in needing to call the cops, both at home and at school.

Here he is - the one playing the drums.
Pretty darned extraordinary for an 11-year-old kid, with or without a disability.

I've been trying to take deep breaths and not melt down over this particular line of thought, but...

less likely to pick up destructive behavioural habits.

Seriously? Autism isn't contagious. His behavior wouldn't be "picked up" any more than he would "pick up" another kid's reading level.
posted by Daily Alice at 3:30 PM on July 19 [3 favorites]


I finally went and read the bill. If I were a lawmaker I would vote for it. I am sure it's supported by some anti-abortion rights people, but I don't think that the law is actually anti-choice.
posted by ClaudiaCenter at 4:01 PM on July 19


Daily Alice:My kid is autistic, with a very high IQ, and some severely challenging behaviors, like the kind that result in needing to call the cops, both at home and at school.

Here he is - the one playing the drums.
Pretty darned extraordinary for an 11-year-old kid, with or without a disability.


That is impressive. Definitely a talent.

Here's my daughter, since everybody else is doing it.

I've been trying to take deep breaths and not melt down over this particular line of thought, but...
less likely to pick up destructive behavioural habits.
Seriously? Autism isn't contagious. His behavior wouldn't be "picked up" any more than he would "pick up" another kid's reading level.


Not unless there's a bit o' behavioural predisposition there already. :-) I don't expect my daughter to escalate to call-the-cops levels in the future (knock on wood), but there have been periods at school when she has taken anarchic joy in pushing, hitting, throwing her food, and running off down the hall. So far, a couple of weeks of calm, firm discipline has been enough to get her back on track each time, but I can imagine - and I worry about - a situation where an overwhelmed teacher and a tempting example make getting her back on track much harder.

What would be ideal would be if the teacher would get extra classroom help. That's been a hit-and-miss proposition, though. Having a kid in the class whose favourite activity was running out on the street and trying to touch turning car wheels wasn't enough to get extra help. Having a kid who appears to be on his way to call-the-cops levels of behaviour looks like it's not going to result in extra classroom help, either.

That doesn't excuse my irrational, "I wish there were more Down's kids" reaction, but it might paint more of a picture of where the reaction is coming from.

Is that less meltdown-inducing, or more?
posted by clawsoon at 5:24 PM on July 19


They are there under a sort of quota system, though, given the early screening available for Down's and the lack of such for autism. Somebody did pick these kids off a menu - or the converse of that, rather, where a huge number of kids with Down's were eliminated before they could reach any classrooms.


And this is why groups like Autism Speaks makes me, a very passionately pro-choice woman, crazy. Instead of putting that nice chunk of fundraised money into research on education approaches and technologies that can make life easier for the autistic people who currently exist, they put the money into trying to find genetic markers that identify persons with autism, in the interest of "finding a cure", of course.

Developing proven interventions and supportive devices that make it easier for an autistic person to successfully make their way in the world vs. tests that identify children with autism in utero ... Their idea of a "cure" has a suspiciously strong whiff of eugenics to me.

Exactly who is AS speaking for? Not autistic people, that's for sure ...
posted by echolalia67 at 5:46 PM on July 19 [3 favorites]


Having a kid in the class whose favourite activity was running out on the street and trying to touch turning car wheels wasn't enough to get extra help.Having a kid who appears to be on his way to call-the-cops levels of behaviour looks like it's not going to result in extra classroom help, either.


Or, in the case of my son, neurotypical kids who think that his stims and tics are suuuper entertaining, egging him on to act in inappropriate ways, unconcerned with the fact that doing so interferes with his ability to get an education and adds punitive consequences to his school day. Who exactly is it who needs an intervention here?
posted by echolalia67 at 5:53 PM on July 19 [1 favorite]


echolalia67: Or, in the case of my son, neurotypical kids who think that his stims and tics are suuuper entertaining, egging him on to act in inappropriate ways, unconcerned with the fact that doing so interferes with his ability to get an education and adds punitive consequences to his school day. Who exactly is it who needs an intervention here?

The neurotypical kids are learning a valuable skill for today's economy: How to get away with stuff while someone else gets the blame.

How else are they going to make it to Wall Street?
posted by clawsoon at 6:13 PM on July 19 [1 favorite]


echolalia67: And this is why groups like Autism Speaks makes me, a very passionately pro-choice woman, crazy. Instead of putting that nice chunk of fundraised money into research on education approaches and technologies that can make life easier for the autistic people who currently exist, they put the money into trying to find genetic markers that identify persons with autism, in the interest of "finding a cure", of course.

Developing proven interventions and supportive devices that make it easier for an autistic person to successfully make their way in the world vs. tests that identify children with autism in utero ... Their idea of a "cure" has a suspiciously strong whiff of eugenics to me.


There is no doubt that you're correct. If we were interested in genetic cures, Down's Syndrome seems like it would be a straightforward target: Just find a way to disable or remove the third copy of chromosome 21. It is completely clear what needs to be done for a genetic cure, but I don't know of anyone who's working on research to that end. We made it to "identify for the purposes of abortion", and stopped. That's the "cure".

A genetic cure for autism would likely be much more difficult. There's no obvious mutation that causes it, so it's likely some combination of genetics, epigenetic modifications, and environmental responses. In other words, a hugely complex tangle of targets to correct for a genetic cure. Are they gonna do that? You're completely right: No. We haven't taken on the much easier case of Down's Syndrome, and we won't do it for autism.
posted by clawsoon at 6:32 PM on July 19 [1 favorite]


My worry would be that if rights activists are abandoning the "Chicken Soup for the Nation's Soul" approach in favour of the abstract "extending ideals such as liberty and equality to include everyone" approach, you'll end up losing the rights you're trying to win.

Rights aren't won by infantalizing or dehumanizing people. Those are ways of justifying *withhold* rights and *reinforcing* oppression, which is exactly why infantalization and dehumanization are so dangerous.

Anyway, I'm 100% behind increasing public supports for people with disabilities and their caregivers, and the issue I have with Chloe's Law isn't that reliable and evidence-based information about Down Syndrome could be made *available* to women pregnant with fetuses who have been screened as having Down Syndrome. The issues I have with Chloe's Law are:

1. In the linked articles, at least, Chloe is reduced to a personification of Down Syndrome (since that's dehumanizing). The version of Down Syndrome that Chloe represents is also infantalized (she's, after all, literally a child) and without any apparent agency (or at least I haven't seen her quoted anywhere, and when she's spoken of in the linked articles, it's as some kind of ~Inspirational~ "magical cripple" trope instead of as a person). Since she's a child and hasn't been apparently granted a voice in this, I also think it's exploitative of her parents and the policymakers to transform Chloe into a poster child, and using her for their own anti-choice political gains.

2. That any woman determined to be pregnant with a fetus with Down Syndrome *must* be "educated" about Down Syndrome regardless of their own desires/needs/choices. This is just one of the many "education" requirements that are, by and large, meant to act as hoops for pregnant women to jump through in order to obtain an abortion, and imo the point is to diminish women's access to abortions. This particular "education" requirement is arguably less intrusive and galling than some others, but its association/similarity with those other, often *extremely* intrusive (in both an emotional and a *physical* sense) "education" requirements, and this law's requirement that providers *must* decimate the information, taint it pretty badly, at least in my eyes. For context, the most galling and intrusive of the "education" requirements, to me, is the requirement in some states for women to undergo an ultrasound before obtaining an abortion -- the required ultrasound necessitates that the health provider insert a wand into the women's vagina, and I personally think that it's physically coercive at best and I would frankly categorize it as sexual assault.

In my ideal world, which is probably not the ideal world of Chloe's parents, Chloe herself would have a voice in the campaign for a law that's got her name on it, and it would be for providing supports for people who EXIST who have Down Syndrome -- such as Chloe herself! -- and/or for their caregivers. In the actual world, it looks to me like Chloe is being used by her parents/politicians/a branch of the anti-abortion movement as a prop, to push forward a bill meant to force "education" down the throats of women in an emotionally manipulative effort to throw yet another obstacle between a woman and her ability to choose abortion.

Developing proven interventions and supportive devices that make it easier for an autistic person to successfully make their way in the world vs. tests that identify children with autism in utero ... Their idea of a "cure" has a suspiciously strong whiff of eugenics to me.

Yes, I completely agree. I don't have much moral trepidation when it comes to looking for cures for anatomical abnormalities/deficits. The overlap between supportive devices and "cures" is pretty heavy there anyway, at least in my knowledge/conception (for example, I think a prosthesis would be in the middle of that Venn Diagram). I've sure benefited from cures from some physical abnormalities/deficits myself, and they've improved my quality of life without undermining my identity or sense of self. But when the difference/disability is so vaguely/broadly defined and the physical causes aren't even known, like with autism, I feel that rather than overlapping with supportive devices, the "cure" starts overlapping with "compliance," and that's where I start getting whiffs of fascism/eugenics/coercion-in-the-name-of-complying-with-normativity. But I'm still learning about this kind of thing, and am open to being corrected.

Or, in the case of my son, neurotypical kids who think that his stims and tics are suuuper entertaining, egging him on to act in inappropriate ways, unconcerned with the fact that doing so interferes with his ability to get an education and adds punitive consequences to his school day. Who exactly is it who needs an intervention here?

This is frankly shocking to me. That kind of hostile behavior is *not* an inevitability or something that happens everywhere, and it shouldn't be happening to your son. Don't want to pry or derail, and obviously I'm just one person with one fallible opinion, but I did want to mention that while, in my experience, relative social isolation is super common for young kids with ASD, that kind of active cruelty on the part of his classmates (who even see him get punished for doing things they goaded him to do, and continue to goad him? even find it *funny* when he gets into trouble?!) really *isn't.* I mean, it might be common in some places, but it really wasn't in the schools where I taught or where I went as a student (same district, same schools). That situation actually *does* seem like it requires an intervention.
posted by rue72 at 8:13 PM on July 19 [3 favorites]


Here's my plug for reading if this topic interests you: Testing Women, Testing the Fetus It's out of date, but still fascinating. I think I learned about it from Metafilter!
posted by atomicstone at 9:34 PM on July 19


Eh, I share some concerns about the dehumanization of people with disabilities, as well as about making women jump through hoops to get abortions...but I don't really see that in the links here.

On the abortion point, this isn't a requirement for people seeking an abortion. It is a requirement for health practitioners to provide accurate information about a specific syndrome that either the pregnant woman is specifically having testing for or to parents of a baby who has just been born with that syndrome. I don't see parallels here with a requirement for an transvaginal ultrasound prior to having an abortion.

Frankly, the stories parents have shared here are pretty shocking and you can see the outcry and need for the health care system to be better educated and for information to be available--not coerced, but available.
posted by freejinn at 10:26 PM on July 19 [1 favorite]


But when the difference/disability is so vaguely/broadly defined and the physical causes aren't even known, like with autism, I feel that rather than overlapping with supportive devices, the "cure" starts overlapping with "compliance," and that's where I start getting whiffs of fascism/eugenics/coercion-in-the-name-of-complying-with-normativity. But I'm still learning about this kind of thing, and am open to being corrected.


I think the thing that needs to happen is that we need to ask autistic adults what interventions helped them when growing up and which ones did more harm than good. We need to let them drive the process of developing treatments and assistive technologies - who knows better how to help autistic children than autistic adults? And most importantly, as family members and allies we need to continue to insist that the neurotypical world meet the neurodivergent community half way.
posted by echolalia67 at 10:29 PM on July 19


And yeah, that kind of hostile behavior on the part of classmates is not an uncommon thing. Hell, that kind of thing on the part of adults isn't that uncommon.
posted by freejinn at 10:32 PM on July 19 [1 favorite]


And this is why groups like Autism Speaks makes me, a very passionately pro-choice woman, crazy. Instead of putting that nice chunk of fundraised money into research on education approaches and technologies that can make life easier for the autistic people who currently exist, they put the money into trying to find genetic markers that identify persons with autism, in the interest of "finding a cure", of course.

I think autism is entirely different. Autism is a spectrum on which many people reside, and the vast majority of those can live perfectly healthy and happy lives with proper management. Most people with autism are to some degree different; a much smaller portion can be truly said to be "worse off" if the people around them are willing to make allowances. Given how much intervention and attitudes matter and how much respect for diversity (including neurodiversity) improves communities in general, to spend large quantities of money on "prevention" is ludicrously imbalanced.

But--saying that it would be better if Down's didn't exist is not any different than saying cystic fibrosis shouldn't exist. They're both a longstanding part of human genetic diversity. There have been many fantastic people with both conditions. It would still be better from a public health perspective for fewer people to have those disorders. Trisomy 21 does cause impaired intellectual function, but it's also associated with increased risk of a huge host of physical problems which, among other things, result in a life expectancy decades shorter than expected. There are clear reasons why both care and prevention should be prioritized for both CF and Down's. There's a difference between certain conditions being seen as undesirable because of social stigma and being seen as undesirable because they're actually harmful.
posted by Sequence at 10:36 PM on July 19 [1 favorite]


freejinn: Frankly, the stories parents have shared here are pretty shocking and you can see the outcry and need for the health care system to be better educated and for information to be available--not coerced, but available.

Absolutely, but if you don't live in Pennsylvania, you may not be aware of how activist the state government has become under the administration of Tom Corbett, particularly on the abortion issue. The fear is that the PA Health Department would be furnishing factually incorrect or misleading information with an anti-abortion slant to it.

Now, it's quite probable that the benefits of providing more information to parents are such that it's worth taking this risk, but after seeing how the state government has handled the issue of reproductive freedom, voter ID, and the shale gas industry here, I think there's cause for concern that this isn't being done for the right reasons, and that it may cause some harm even as it does some good.
posted by tonycpsu at 10:44 PM on July 19 [2 favorites]


There is no doubt that you're correct. If we were interested in genetic cures, Down's Syndrome seems like it would be a straightforward target: Just find a way to disable or remove the third copy of chromosome 21. It is completely clear what needs to be done for a genetic cure, but I don't know of anyone who's working on research to that end. We made it to "identify for the purposes of abortion", and stopped. That's the "cure".

Here's the thing though - I believe that we need treatments that help mitigate the aspects of Down and Autism that hinder progress towards a fulfilling and autonomous adulthood, but do we need to entirely eradicate all traces of Down or ASD in an individual? Isn't being a person with a DD an entirely valid way to live in this world in and of itself? Is it so terrible to be outside the norm? This is not to say that people with DS/ASD are some sort of precious faerie folk whose presence is edifying and uplifting to us all. I just think they're nothing wrong with being different, per se and the focus should be on meeting people's needs where they are, not based on where we want them to be.
posted by echolalia67 at 10:47 PM on July 19 [1 favorite]


This is going to be a touchy-subject minefield, but the "Five Things new parts of Down syndrome children need to hear" leaves out something my wife dealt with:

What happens when you get old and die?

She worked at a group-home, which was one of the better ones in the country, and from what she has said, it's a sad-sad life these people lead. They don't understand that they are growing older, that their parents can not take care of them anymore, why they have to live with 3 other people that they hate in a house. Why a stranger has to physically brush their teeth, wipe their ass, and legally can't stop fights between individuals. Why they can't afford anything because after disability and state money goes to pay for rent, shampoo, soap they will literally have $10 for "entertainment/clothing".

Eventually, they become all alone in the world, with only strangers getting paid slightly above minimum wage doing anything for them.


OK. What to say here? If that is her experience, I'm going to argue that, no, she was not working at one of the better group homes in the country. That doesn't sound like the worst I've seen, but it sounds pretty shitty. "Can't legally stop fights between individuals" - obviously I don't know what state (or country?) this was in, but sounds pretty much like the opposite of what is legally true in any state I am aware of.

But saying that, I have to admit there really are a lot of bad group home situations, and the fact that it is low paid work that society places little value on contributes to that problem. I nearly cried once when I ran in to one of my favorite (former) group home managers slinging curly fries at an Arby's because it was not only a less stressful but better paying job while he finished school. And that is a super tough element for people who depend on others to provide care--even, as you mentioned above, at times intimate care--that even when you can find good caregivers, they are so damn difficult to hang on to.
posted by freejinn at 10:48 PM on July 19 [2 favorites]


You are right, I do not live in and I'm not at all familiar with its state government. But I am from Utah, so...you know. I know from backwards state governments.

I understand the concern, and I really do not like the way that Down Syndrome advocacy and public policy often gets conflated with abortion politics. I guess I am just of the mind that when something mostly right gets done for the wrong reasons, I'm just grateful they didn't do the wrong thing again.
posted by freejinn at 11:11 PM on July 19 [1 favorite]


Isn't being a person with a DD an entirely valid way to live in this world in and of itself? Is it so terrible to be outside the norm?

It is not at all terrible to be outside the norm, but that is not an accurate way of looking at trisomy 21 and other major causes of serious intellectual disability. There is nothing wrong with the person who is the person with cancer, but we have medical care because people should not have to live with cancer. Down's does not just make people intellectually different, it's associated with, aside from the heart thing that most people know about, serious digestive problems, sleep apnea, joint dislocation, vision and hearing loss, and hypothyroidism, possibly other stuff, that's just the ones I know about off the top of my head. You can't just make all those things better with better social services and less stigma.
posted by Sequence at 11:16 PM on July 19 [2 favorites]


I don't see why we can't try to address the challenging physical aspects of having DS or Autism (a few of the things you mention are also issues for kids on the spectrum) without buying into the whole idea that every aspect of DS is a problem in search of a solution.
posted by echolalia67 at 11:54 PM on July 19


It is a requirement for health practitioners to provide accurate information about a specific syndrome that either the pregnant woman is specifically having testing for

That's pretty disingenuous. First, it's a requirement that physicians provide publications created by Corbett's government, which would then be deemed "accurate." I guaran-dam-tee you that these publications will paint the rosiest picture possible that bears even a passing resemblance to the truth. I would bet you a nice meal that it will contain at least one outright error or lie notionally covered by reporting it as someone else's statement.

Second, the purpose of this is not to provide people with information they would actually find helpful in freely making their own decisions. This is a progran to shame women and families who've just received a prenatal diagnosis of trisomy 21 into nt aborting the fetus.
posted by ROU_Xenophobe at 12:12 AM on July 20 [4 favorites]


I guess I am just of the mind that when something mostly right gets done for the wrong reasons, I'm just grateful they didn't do the wrong thing again.

Except, how do you know this is the right thing? Like tonycpsu said, "The fear is that the PA Health Department would be furnishing factually incorrect or misleading information with an anti-abortion slant to it." Judging by past campaigns spearheaded by the same politicians/policymakers and conducted in similar ways, I think that that's a *very* valid fear. Imo, this campaign is really about saying and doing anything possible to manipulate and/or coerce women into having fewer abortions, and people with Down Syndrome are just being used as props and tools toward that end -- including Chloe, whose name is on the damn bill.

If you read through the different copies of the bill, on each one there's a list of orgs cleared to provide required-to-be-dessimated information, and on each one, orgs are crossed out and re-listed and crossed out and re-listed. There's obviously some infighting and some political agendas at work there.

I think the thing that needs to happen is that we need to ask autistic adults what interventions helped them when growing up and which ones did more harm than good. We need to let them drive the process of developing treatments and assistive technologies - who knows better how to help autistic children than autistic adults?

I think this gets into the question of how advocacy should be structured, and personally, I think that's an incredibly tough question when it comes to DDs, especially those for which the tech/treatments/interventions and culture and even how these disabilities/differences are conceived of medically have all changed really fast (which is a lot of them, frankly). Because the changes have been so fast, I'm not actually sure that the needs/experiences of the current adult cohort are necessarily going to reflect the future (let alone current) needs/experiences of the current child cohort for every (maybe any?) of the disabilities/differences that fall under the DD umbrella. I mean, still, nothing beats lived experience in terms of knowing what kinds of supports are useful/desirable and which not. But to a certain extent, there's also going to be major fragmentation between different cohorts (based on age, nationality, anything) and what works or is important for one cohort isn't necessarily going to work or be important to another.

And then there's the whole other can of worms in terms of what advocacy should look like for people whose disabilities limit their ability to communicate or whose disabilities limit their ability to conceptualize what their needs are or how to advocate for themselves. If anybody knows good places to research that, I'd actually be incredibly interested. Not to constantly go back to autism in a thread not about it at all really, but I've heard the complaint a lot in terms of autism advocacy that I think probably is generalizable to DD advocacy in general, which is that the most verbal and the people who best fit the normative standard become the leaders of the advocacy community and the people who can't or won't fit that normative standard end up disempowered and erased even within their ostensible community's own advocacy movement. I don't know enough to come down on one side or another on that debate, just thinking out loud about who gets heard and who doesn't when it comes to people advocating for rights concerning DD and whether the movements themselves default to normativity-reinforcing structures.

I don't see why we can't try to address the challenging physical aspects of having DS or Autism (a few of the things you mention are also issues for kids on the spectrum) without buying into the whole idea that every aspect of DS is a problem in search of a solution.

Depends on the individual, doesn't it? I mean, maybe someone *does* want to erase all signs of DS or autism or some other aspect of themselves they feel to be a disability or debilitating or just something they don't like. Should they be able to do that? Should there be a stigma against doing *that*? I'm honestly asking. I mean, is striving for the normative ideal an OK thing to do, even on an individual level? Or is that just reinforcing structures of oppression for (likely illusory) personal gain and therefore wrong (or at least shortsighted and selfish)?

And yeah, that kind of hostile behavior on the part of classmates is not an uncommon thing. Hell, that kind of thing on the part of adults isn't that uncommon.

Even sitting here thinking about the cruelty of these little kids winding their classmate up just so he gets into trouble and then getting some kind of perverse glee at watching him get into trouble...is getting *me* so wound up, it's legit pissing me off. That's honestly not something that was common in my school district though, when I was a teacher or a student. It's *not* inevitable that all these gradeschoolers act like perverse little shits. Social exclusion was and is very real, though, and imo that's bad enough. echolalia67, your kid apparently has the patience of a saint, because in elementary school I got into shouting matches and fights and sent out of class and ran out of the damn building multiple times for much less. And those other kids are in school to learn social skills, too, and if the skills they're learning are how to manipulate and hurt people, and those are the social skills your kid is therefore learning by default....All I can say is HULK SMASH. I'm honestly even still lost on the idea that stimming or ticcing could result in a kid facing punitive measures in the first place, but that's probably just my ignorance talking.
posted by rue72 at 12:40 AM on July 20 [2 favorites]


And yet there is a link up there in the post to Deval Patrick signing essentially the same bill lin to law in Massachussetts--where the bill was sponsored by Tom Sannicandro. Not from Massachussetts either, but both of those fellows have some sound support for pro-choice legislation under their belts and are hardly pushing an anti-abortion agenda.

Apparently this Corbett's an asshole and people don't trust his motives. OK. That doesn't mean this has to play out as an anti-abortion screed. I guaran-damn-tee you that not every single person who works in the Pennsylvania state government and the health department in particular is some kind of Corbett minion with a shame agenda. You know, the truth about children with Down Syndrome is not so awful that it can only be sold to prospective parents with lies. It wouldn't surprise me if some piece of purely political BS ended up somewhere in the publication, but it would surprise me if that was all the publication ended up being about.

Keep in mind that the bill also provides much needed info to parents of newborns--where it is not an abortion issue at all.

The crappy part isn't a bill to provide education, it's the lack of bills to provide funding for programs that will make a difference.
posted by freejinn at 1:11 AM on July 20


I don't see why we can't try to address the challenging physical aspects of having DS or Autism (a few of the things you mention are also issues for kids on the spectrum) without buying into the whole idea that every aspect of DS is a problem in search of a solution.

Again, CF--it can be treated, but it is considerably less costly and more likely to result in a healthy individual to deal with genetic screening beforehand. Cancer treatments are available, but it is better never to get cancer. Better dementia treatments do not guarantee an improved outcome compared to having a child who does not have a hugely increased risk of dementia in early-middle adulthood.

You can't just make all the other parts of the diagnosis go away. It all goes together. It's all the thing that having that extra chromosome does--it affects the brain and everything else, too. Autism may often be comorbid with serious health conditions, but it's also extremely common for it not to be. It isn't just that some people have a mild form of autism that doesn't turn into fragile X, many people on the spectrum just plain don't have fragile X. So preventing fragile X is not the same thing as preventing autism--and saying that you need to prevent/cure autism because of fragile X would be silly. DS is not just lower intellectual functioning that sometimes goes with some health problems, it's a genetic defect that causes pervasive physiological changes, part of which are in the brain. Having it doesn't make someone a defective human being, it just makes them a human being with a health condition. The sort of language that treats some human beings as defective needs to die in a fire, but that doesn't mean we stop treating/preventing such health conditions where possible.
posted by Sequence at 1:51 AM on July 20 [2 favorites]


Down's does not just make people intellectually different, it's associated with, aside from the heart thing that most people know about, serious digestive problems, sleep apnea, joint dislocation, vision and hearing loss, and hypothyroidism, possibly other stuff, that's just the ones I know about off the top of my head. You can't just make all those things better with better social services and less stigma.

I really have the sense that if Down's was just the "physical" stuff and the huge risk for dementia, we'd hardly hear a peep about any of this. But add in the intellectual stuff and it gets ... fetishized or sacralized. Disturbing.
posted by save alive nothing that breatheth at 5:39 AM on July 20


FYI, the Massachusetts Down Syndrome Congress was completely supportive of the MA bill. The MDSC is a fabulous organization. They've helped us out in countless ways.

One funny thing about our current society is that most of us would expect very little of people with Down syndrome, even those who should know better. Case in point, we switched schools in the district and a month in we had a meeting with the sped teacher who reported that Alice couldn't rote count past 10, couldn't do single digit math, nor tell time. We pulled out last year's work sheets showing quite the opposite. She can count to 20, identify numbers up to 100, do single digit arithmetic and some single/double and tell time to the half hour. Jaws dropped. "She's totally working you. I'm thinking that when she gets these problems wrong you reward her by stopping, right?" Jaws fell open further. Smarter than you think.

I work with a guy who used to work in a group home. He told me all kinds of stories that are in the same vein. A DD guy who had stolen a key to a storage room and snuck out at night to steal all the cookies. The guy who managed his money, who showed up at local frat parties and stayed until he could leave with a free case of beer, or go to a bar and order a beer and put a dollar down. He knew full well what a beer cost, but the bartender thought he didn't. Dollar drafts every day.

So no, I don't think our collective education level is there. And yes, I certainly hope that the PA DS group reviews the information for accuracy. Remember that 45 years ago, the state of the art information was "won't likely live past 30, probably won't learn self-care, best place is an institution."

It took the Kennedy/Shriver influence to change that for the better.

Also there is current research (I met Jeanne Lawrence at the annual MDSC conference this year) who is doing active research to "silence" the extra chromosome.
posted by plinth at 7:21 AM on July 20 [5 favorites]


they put the money into trying to find genetic markers that identify persons with autism, in the interest of "finding a cure", of course.

I don't talk about this much, but my brilliant, awesome son is diagnosed with ADHD, Austism Spectrum Disorder, and probably also has Dysgraphia or some similar syndrome. He's sort of an outlier, as he is very "high functioning" (ye gods how I hate that term) and wasn't diagnosed until he was 7, after two years of testing.

FWIW, I also believe autism is not purely genetic. Based solely on my own experience of watching my typically developing child develop the traits of autism as he got older, I'm fairly convinced that it's actually triggered by some environmental factor (no, not vaccines, but something we haven't pinpointed yet) that may or may not interact with an individuals genetic makeup.

Were a genetic test for ASD developed, I'd also be first in line, because I'm pretty sure that -- while the ASD checklist does describe some of my son's 'issues' it doesn't describe him well, and I think that were there an ASD genetic marker, my son (and thousands and thousands of other children like him) would not have it -- because whatever is going on with him is something else, something more complex. No one knows what causes autism, and the diagnosis of autism is entirely behavioral -- ASD describes behaviors (on a continuum), there is no 'test' for it and no way for certain to tell if someone 'has' it or not - it's just a label. And (with all respect to DSM V) it is not a label that well serves the continuum of kids and adults that range from really severe impairments that restrict any sort of 'normal' life through Ben Miles through to my quirky but basically normal child. And once you have that sticker on your file, let me tell you, people expect a different kid -- they expect a kid who stims, a kid who seems alien, a kid with Big Problems. They do not expect (or know how to deal with, even though they could handle him fine without the label) my kid.

So, never mind 'finding a cure'. Finding (or failing to find) a genetic marker for autism would go a very long way to sorting out what the heck causes autism, and creating a more stable and reliable diagnosis for it. (And, yeah, also finding (or ruling out) treatments). For me personally, because I believe that it's environmental, finding a genetic marker would (perversely) relieve me of a lot of guilt that I carry as a mother -- guilt that I somehow did this to him, by eating or drinking something, by having the 'flu while I was pregnant, or that something in our 1910 house (or something in his caregivers house, or ...) made him this way. It's a question I ask myself (and beat myself up for) every single day -- was it the BPA? The pesticide my neighbors use? Could I have prevented this???

A genetic diagnosis would relieve me (and, I suspect, a lot of mothers like me) of all that guilt.
posted by anastasiav at 7:27 AM on July 20


plinth: Also there is current research (I met Jeanne Lawrence at the annual MDSC conference this year) who is doing active research to "silence" the extra chromosome.

Fascinating. I had no idea. Thanks for that link. I was thinking as I was drifting off last night... "gee, I wonder if the X-inactivation circuits could be used for something like this... nah, probably too complicated." But, whuddyah know... that's exactly the approach they're taking.

Case in point, we switched schools in the district and a month in we had a meeting with the sped teacher who reported that Alice couldn't rote count past 10, couldn't do single digit math, nor tell time. We pulled out last year's work sheets showing quite the opposite. She can count to 20, identify numbers up to 100, do single digit arithmetic and some single/double and tell time to the half hour. Jaws dropped. "She's totally working you. I'm thinking that when she gets these problems wrong you reward her by stopping, right?" Jaws fell open further. Smarter than you think.

One thing I've found very handy in this sort of situation is video. Yes, Ms Speech Therapist, I understand that you've only gotten a couple of basic monotonic sounds out of her. Here's a video of her at home, though, spitting out multi-word sentences with a great deal of expression. You might want to explore some alternative therapeutic strategies...
posted by clawsoon at 7:40 AM on July 20 [1 favorite]


Oh and with regards to the "what will s/he do when you die?" question, I attended a session in the National conference and the MA conference entirely about this topic. We have a "special needs trust" set up which will, at least, allow her a funds/care beyond what the state is willing to allow. The idea is that when a person with DD becomes a ward of the state, the state will seize all that person's assets with no obligation to allow access to those assets in equal measure. They all go into the pot. By putting away funds in a special needs trust fund, they are sheltered against that.

We set this up earlier not for us, but for our parents. If they ignorantly left money or funds in her name, we'd have a long term problem. We set up the trust so that anything they wanted her to specifically get could go through the trust and not directly. The lawyer who set this up was shocked to see people so young in his office since he was used to dealing with much more gray hair. He changed his mind pretty quickly about that.
posted by plinth at 7:45 AM on July 20 [1 favorite]


That doesn't mean this has to play out as an anti-abortion screed.

It doesn't have to at all. But in this case it will.
posted by ROU_Xenophobe at 7:52 AM on July 20


For me personally, because I believe that it's environmental, finding a genetic marker would (perversely) relieve me of a lot of guilt that I carry as a mother -- guilt that I somehow did this to him, by eating or drinking something, by having the 'flu while I was pregnant, or that something in our 1910 house (or something in his caregivers house, or ...) made him this way. It's a question I ask myself (and beat myself up for) every single day -- was it the BPA? The pesticide my neighbors use? Could I have prevented this???


Please, stop battering yourself. You did not do this to your child.

A large-scale study in Britain found that the prevalence of diagnosed and undiagnosed ASD in adults was nearly identical to that of children, suggesting the rise in reported cases has more to do with better diagnostics rather than an increase in cases.

As for finding a genetic cause - my son's social sensory therapy group had a professor in the Education department of our local university come in to speak to the parents. She was also connected to UCD's EARLI program. What she said was that the research indicated that there was no single Autism disorder but several. About 6 different genetic markers have been identified in kids with Autism, so far. There was at least one subtype that was associated with autoimmune dysfunction. The most interesting/puzzling correlation was between higher rates of diagnosed autism and people whose ancestors came from island nations with high humidity.
posted by echolalia67 at 9:14 AM on July 20 [1 favorite]


I should clarify... "Yes, Ms Speech Therapist..." is what I'm thinking sometimes, but I'm not nearly so snarky in person. It's much more useful to say, "It's interesting that you're seeing such limited vocalization during therapy. Here's a video of some of what she does at home. I wonder if there's a way we can make her more comfortable or enthusiastic in therapy so that it's more productive."
posted by clawsoon at 9:23 AM on July 20


echolalia67: About 6 different genetic markers have been identified in kids with Autism, so far. There was at least one subtype that was associated with autoimmune dysfunction. The most interesting/puzzling correlation was between higher rates of diagnosed autism and people whose ancestors came from island nations with high humidity.

Keep in mind that there's a major problem right now in a lot of genetic research with data-mining. I'm not sure if it applies to the research you're referring to, but if you talk to some researchers privately, they'll grumble about the spurious correlations that get published from massive data sets. (Then, if they're especially honest and/or drunk, they'll hint that they have to do the same thing, because of the publish-or-perish imperative.) It's getting better, though; some meta-studies showed that it was shockingly bad in the first decade of this century, which has led to reforms.

The genes associated with immunity are an especially fertile source of spurious correlations, because they are highly variable compared to most of the rest of the genome. Just by chance, even large, well-run studies can show correlations with immune system genes.

Olfactory genes, too, as it happens, since they're also highly variable, but it's much easier to dismiss olfactory gene correlations as spurious. With the immune system, though, who knows? The associations might be random, and they might be real.
posted by clawsoon at 9:39 AM on July 20


I want to thank clawsoon, plinth, and anastasiev for sharing your experiences as parents of kids with DS and other special needs. It would be a precious resource if collections of experiences like these, rather than anti-abortion agenda driven materials, would be routine reading not just for pregnant women with fetal diagnostics at stake but also for the clinicians, legislators, and policy makers doing work in this area.
posted by Salamandrous at 7:40 AM on July 23 [2 favorites]


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