Down Syndrome लेबल असलेली पोस्ट दाखवित आहे. सर्व पोस्ट्‍स दर्शवा
Down Syndrome लेबल असलेली पोस्ट दाखवित आहे. सर्व पोस्ट्‍स दर्शवा

२७ ऑगस्ट, २०२०

"Before Samuel was even born, I was told his life wouldn’t be worth living. When early tests revealed he had Down syndrome..."

"... our doctor encouraged me to terminate the pregnancy. He said, 'If you do not, you will be burdening your life, your family, and your community.'... When we went to register Samuel for kindergarten, we were told to just put him where he would be comfortable. Don’t stress him out by trying to teach him. When we pushed for him to attend his neighborhood school with his sisters, we were told, 'Just go home and let us do what we do.' When I inquired about functional learning, I was told, 'This is all you get, like it or not.' Well, I did not like it. One size did not fit all. So, I helped fight to pass legislation in Ohio for a special needs scholarship, so that all students could choose the right program for their needs. I worked to start a new functional learning program at our local private school. Finally, Samuel had an appropriate place to learn. Last December, Samuel was invited to the White House to meet our President and share his thoughts on education freedom. He said, 'School choice helped my dreams come true. My school taught me the way I learn best. I was able to fit in. I made many friends. I became a part of my community. My teachers helped me become the best I can be.' President Trump shook my hand and said, 'Wonderful job, mom. Your son is amazing.'"

From last night's GOP convention, a woman named Tara Myers.

Here's the video. I am especially touched at the part where she quotes her son:

२२ एप्रिल, २०१८

"Twitter reportedly blocked a British pro-life activist with Down Syndrome for more than 24 hours after she posted pro-life pictures."

"Charlotte 'Charlie' Fien rebuked the social media giant with a trenchantly worded tweet once her account was restored Tuesday," reports Life Site.
“Funny how Twitter allows paedophiles and other scum. Funny how Twitter doesn’t like my Pro Life pics and blocks them,” she tweeted....

[Fien gave a speech to United Nations delegates in Geneva last March in which s]he likened the growing genocide of Down’s babies to the Nazi euthanasia programs of the 1930s.

“I am not suffering,” she told delegates. “I am not ill. None of my friends who have Down’s syndrome are suffering either. We live happy lives. We just have an extra chromosome... We are still human beings. We are not monsters. Don’t be afraid of us. … Please don’t try to kill us all off.”

१७ एप्रिल, २०१८

"So why is there such reluctance to have children with Down syndrome?"

Asks the bioethicist Chris Kaposy in "The Ethical Case for Having a Baby With Down Syndrome (NYT)"
One explanation shows up repeatedly when parents recount the early days after receiving their child’s diagnosis. They feel a sense of loss because they no longer dream that their child will get married, go to college or start a family of their own one day — in other words, that they will not meet the conventional expectations for the perfect middle-class life....

Perhaps the question to ask is: Why do we have children at all? Most parents would agree that it is not only so that they can replicate a conventional arc of a successful middle-class life: college, marriage, real estate, grandchildren. If those are the reasons to abort fetuses with Down syndrome, they seem disappointing — they are either self-centered or empty in their narrow-minded conventionality....
Kaposy proceeds to embrace reproductive freedom and to put the right to choose in terms of choosing one's values. His last sentence is: "If you value acceptance, empathy and unconditional love, you, too, should welcome a child with Down syndrome into your life."

That idea goes beyond the simple problem of choosing (if you're a person who believes you have a choice) to give birth to a child you know has Down syndrome. There is also the more complicated and harder to perceive problem in a question that Kaposy asks but leaves mostly unexplored, "Why do we have children at all?"

Kaposy gives that question a pat send-off: "Most parents would agree that it is not only so that they can replicate a conventional arc of a successful middle-class life: college, marriage, real estate, grandchildren." What are "most parents" thinking when they decide (if they decide at all) to devote so much of their time and work and money to the human stranger that is their future baby? Isn't it something close to the replication of a conventional arc of a successful middle-class life? If it's "not only" that, it's because they want an even better life for that child, understood mostly in terms of worldly success.

Of course, the conventional idea of a successful middle-class life involves acceptance, empathy and unconditional love flowing from the parents toward the child and the child toward the parents, going on as long as any of them are alive. That too is self-centered and conventional — a kinder, gentler self-centered conventionality.

But you may not get what you're picturing, even when you believe you have a right to abort and choose to have that child. We don't look very critically at our mental picture of the unborn child, which is much more idealized when we aren't facing news that the child has a disability.

२५ मे, २०१७

France censors a public-service ad that shows children with Down syndrome growing up happily.

Here's the ad:



Here's Sohrab Ahmari in The Wall Street Journal.
In France three TV networks agreed to carry [the "Dear Future Mom" ad] as a public service. The feedback was glowing -- until that summer, when the government's High Audiovisual Council, or CSA, issued a pair of regulatory bulletins interdicting the ad. The regulator said it was reacting to audience complaints.
The Jerome Lejeune Foundation, which sponsors the ad in France, eventually learned that only 2 complaints had been filed. One objected to the foundation, because it is anti-abortion. The other came from a woman who'd had an abortion when she was told her unborn child had Down syndrome. Because she mourned the child, she said, she experienced the ad as "violent."
The foundation appealed [the ban], and the case eventually came before the Council of State, France's highest administrative court. The council in November affirmed the ban, holding that the ad could "disturb the conscience" of women who had had abortions after a Down syndrome diagnosis....

For the foundation, the claim that the ad evokes feelings of guilt only attests to its moral truth. Says spokeswoman Stephanie Billot: "When you show a video of DS kids who say, 'Well, I won't be normal, but I will still be able to love you,' the guilt becomes so unbearable that society rejects it. It's a common, unconscious guilt for all who said nothing about the effort to systematically eliminate DS." Guilt can be salutary.

The foundation this month lodged an appeal with the European Court of Human Rights, asserting free-speech violations as well as genetic discrimination....

२६ मार्च, २०१६

Getting an abortion for what Indiana has deemed the wrong reason: the unborn has Down syndrome or some other anomaly or is not the sex or race you want.

WaPo reports.

I'd like to try to connect this to the original Roe v. Wade decision, which was resolved in favor of the woman's right to choose because of the difficulty of the question — before "viability" — of when the fetus should be considered "a person." I've never noticed anyone — other than me, making hypotheticals for law school class — proposing a law that would require the woman seeking an abortion to swear that she believes the entity she is about to destroy is not a person. But something about this new Indiana law reminds me of that hypo. The woman is ending the pregnancy because she sees the unborn not as mere abstract potential but as a person, a specific person — someone she rejects.

I presume the law would just cause abortion providers to make a statement about the law that would work as advice not to reveal the reason if you've got one of the wrong reasons. Let me look at the bill. Yes, it's directed at the provider:
Prohibits a person from performing an abortion if the person knows that the pregnant woman is seeking the abortion solely because of: (1) the race, color, national origin, ancestry, or sex of the fetus; or (2) a diagnosis or potential diagnosis of the fetus having Down syndrome or any other disability.

१४ जानेवारी, २०१५

Should we — can we — ban selective abortion?

Over at Slate, Amanda Marcotte is writing about a bill in the Indiana legislature that would ban abortion motivated by the disability including "a mental disability or retardation; a physical disfigurement; Scoliosis; Dwarfism; Down syndrome; Albinism; Amelia; and physical or mental disease."
Bills banning sex-selective abortions are trendy among the anti-choice set because, while those abortions aren't actually common in real life, it's politically expedient to traffic in ugly stereotypes of daughter-hating Asian immigrants.... Banning the non-existent problem of sex-selective abortion is an easy way to grandstand and score "pro-life" points while preening about how pro-woman you are. But banning abortions for fetal abnormalities could negatively affect all sorts of women—and their husbands—including those that tend to vote Republican.
Such ugliness to that rhetoric! This is such a sad subject, from either side. Show some empathy! Show some soul! 

२ एप्रिल, २०१३

"[I]t is troubling to me that rates of termination for pregnancies where Down syndrome is identified are extremely high."

Writes Alison Piepmeier, who has a 4-year-old child with Down syndrome and a book "on prenatal testing and reproductive decision-making."

Extremely high? What percentage do you imagine when you hear the rate is "extremely high"? I pictured something like 90%, but according to this article, it's something like 50%. I'd like to see a breakdown in the percentages, with separate numbers for the women who generally think abortion is morally wrong and women who think early abortion is merely ridding the body of an unwanted growth. It might be that these 2 groups are about equal in size, and the women in Group 1 have a 1% incidence of abortion when the unborn is known to have Down syndrome, and Group 2 has 99%. Together, the result is 50%.

But I don't think women divide neatly into 2 groups. It's more of a spectrum, and there are also women who haven't thought about the question in any depth. I can also imagine how a woman in Group 1 might arrive at the decision to have an abortion, and how a woman in Group 2 might decide not to. (In the first case, a woman facing a known challenge might abandon principles she'd previously embraced in the abstract. In the second case, a woman might think that destroying the unborn because of something about that individual is murderous in a way that is not like the generic rejection of a pregnancy happening at an inconvenient time.)

Back to the linked article:
[S]ome parents of children with Down syndrome are celebrating the news that North Dakota has become the first state to outlaw abortion for fetal conditions like Down syndrome. One parent wrote that “it felt like a small victory seeing that abortions based on Down syndrome were banned — like saying, see, individuals with Down syndrome are valued and protected."...
Piepmeier — who has interviewed women who chose to abort in this situation — opposes this kind of law. Unsurprisingly, these women described an "incredibly painful decision," focusing on the difficulties the child would face.

Noting that the North Dakota law won't stop abortions — these women will simply travel out of state — Piepmeier says if North Dakota really cared about the fate of children with Down syndrome, it would take the money that it will now need to be spent in litigation defending the law and spend it on making the state a more "welcoming place for people with disabilities."

१ ऑक्टोबर, २०१२

"There is so much that is heinous about Brittany being used for political gain in this way..."

"... but let’s start with the obvious thing, which is that neither Mitt Romney nor anybody running for office under the Republican banner is suggesting doing anything that would hurt her."

All right, National Review's The Corner, but I found it deeply affecting. I am a woman, and I vote.

१९ मार्च, २०१२

Bristol Palin is waiting for Obama's phone call.

Given that he called Sandra Fluke, she says she's "a little surprised my phone hasn’t rung":
Your $1,000,000 donor Bill Maher has said reprehensible things about my family.  He’s made fun of my brother because of his Down’s Syndrome. He’s said I was “f—-d so hard a baby fell out.”...

What if you did something radical and wildly unpopular with your base and took a stand against the denigration of all women… even if they’re just single moms? Even if they’re Republicans?
Best move for Obama? Call her!

१८ जानेवारी, २०११

Andrew Sullivan reflects on the "difficult task is summoning the right amount of anger with the right amount of generosity of spirit."

Including the way he has treated Sarah Palin:
Here, there is no conceivable way in which, in my judgment, her presence on the national stage can improve our discourse, help solve our problems or improve public life. But that does not forbid one from noting the great example she has shown in rearing a child with Down Syndrome, whatever his provenance, or noting her effectiveness as a demagogue, or from admiring her father's genuineness or her skill in exploiting new media. I've consistently tried to do this without undercutting my still-raw amazement that an advanced democratic society could even contemplate putting such an unstable and irresponsible person in a position of any real power.
His approach to the new civility, he says, will be "generous anger: a classically Orwellian term." The idea is "to make strong and lively points without demonization."

३० नोव्हेंबर, २०१०

What Sarah Palin is doing to her children.

The ratings are up for "Sarah Palin's Alaska." Oh, that's so sad for the people who exulted last week when the ratings were down. I skipped last week myself, but I watched this week's show. It was pretty cool seeing the Palins hauling in fish nets, slicing salmon into strips, tying the strips with string, and hanging them up in a smokehouse, with Todd's Eskimo grandmother demonstrating how to set up the fire to get the smoke just right.

I was touched by Sarah's interaction with Trig and with another boy with Down Syndrome (a member of her extended family). It made me cry and it made me think about this post by Andrew Sullivan criticizing Sarah Palin for combining motherhood and a career in national politics:
Anyone one who genuinely cared about the privacy of her kids would have either said no [to the vice presidential nomination] or been extremely careful to release the information as soberly as possible....

[S]he parades a special needs infant in front of the press, dangles him half-naked in front of book tour crowds, uses him constantly as a rhetorical campaign prop, and cites him at almost every speech to appeal to pro-life voters....

What Palin has done with her young children is unprecedented. Think of how Obama strictly protects his daughters, and how George W. Bush did the same. 
Think of how the press — including you — regards those daughters as off-limits but goes after Palin's daughters.
What Palin has done is use her children, having failed to actually rear them. She is still doing it on her reality show. That she has gone so far as to use and thereby abuse a child with Down Syndrome whose interests are clearly in seclusion, careful nurturing and care, and constant parental attention, tells you a huge amount. 
Seclusion? Is that right, tucking those kids away from the rest of the society? Why not be out and proud?

८ सप्टेंबर, २०१०

Jonathan Chait makes a Special Olympics joke!

He wisecracks "Mitch Daniels Wins The Fiscal Special Olympics."

What is stupider than being stupid while calling other people stupid? You'd think Obama fans would at least learn from Obama's mistakes.

२४ फेब्रुवारी, २०१०

3 Google executives are criminally convicted — in Italy — based on Google's hosting of a video that some Italian students uploaded.

Incredible! And Google even took down the video as soon as it was notified and helped the authorities find and punish the students.

And how horrendous was this video? It depicted bullying. The child bullied had Down syndrome, but still.

ADDED: From the Official Google Blog:
[The conviction] attacks the very principles of freedom on which the Internet is built. Common sense dictates that only the person who films and uploads a video to a hosting platform could take the steps necessary to protect the privacy and obtain the consent of the people they are filming. European Union law was drafted specifically to give hosting providers a safe harbor from liability so long as they remove illegal content once they are notified of its existence. The belief, rightly in our opinion, was that a notice and take down regime of this kind would help creativity flourish and support free speech while protecting personal privacy. If that principle is swept aside and sites like Blogger, YouTube and indeed every social network and any community bulletin board, are held responsible for vetting every single piece of content that is uploaded to them — every piece of text, every photo, every file, every video — then the Web as we know it will cease to exist, and many of the economic, social, political and technological benefits it brings could disappear.

११ ऑगस्ट, २००९

"She understood deeply the lesson our mother and father taught us -- much is expected of those to whom much has been given."

"Throughout her extraordinary life, she touched the lives of millions, and for Eunice that was never enough."

So said Teddy Kennedy about his sister, Eunice Kennedy Shriver, dead at the age of 88.
In the competitive household of her youth, she established herself as the most intellectually gifted of the sisters in a family where the patriarch, Joseph P. Kennedy Sr., decided that his sons were the ones bound for politics.

Within the constraints of her era, gender, and social strata, she was the most ambitious, too, becoming an international leader more than a half century ago in the burgeoning movement to wrest mental retardation from the shadows of hushed conversations.

A younger sister of Rosemary Kennedy, who was developmentally disabled and institutionalized most of her life, Mrs. Shriver dedicated decades to ensuring that other families would not endure the fate of her own, watching a loved one whisked behind closed doors. In an attempt to alleviate Rosemary’s intellectual disabilities, doctors performed a lobotomy that instead left her in need of constant care.
Here are 2 pictures of the great lady — young and old:

८ ऑगस्ट, २००९

Did Sarah Palin say Obama's "death panel" might kill her baby?

Eric Kleefeld writes:
In a new posting on her Facebook account, former Gov. Sarah Palin (R-AK) made a dire statement about health care reform -- that it could result in an Obama-created "death panel" killing her infant son with Down Syndrome...
Here's the full text of her Facebook post. Excerpt:
The Democrats promise that a government health care system will reduce the cost of health care, but as the economist Thomas Sowell has pointed out, government health care will not reduce the cost; it will simply refuse to pay the cost. And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.
She doesn't say that the government will kill disabled (or elderly) persons directly, but that death will occur as a result of the decisions of cost controlling bureaucrats with the power to determine who can receive various treatments. I don't know why "level of productivity in society" is in quotes, nor do I know whether it is the plan to ration care on this basis. Those are actually serious matters, and I'd like to know the answers. What Kleefeld is doing is trying to sweep Palin aside as a big crazy wacko.

Yes, she used a colorful expression "death panel," but it's a good and fair polemical expression if in fact life-saving care will be rationed on this basis. I have found myself saying, in conversation, "I'm afraid Obama is going to kill me." Now, I'm not picturing him or one of his minions coming over to murder me, but I am afraid that as I get older and need expensive care to keep me alive that I will be told I cannot have it, because at my age, in the government's opinion, there's not enough life left in me to be worth the money that I would take from the system that needs to pay for everything.

This isn't a phantom fear. It's a fear stoked by things like this:



(There's a longer version of that clip, plus discussion, here.)

And here's the end of the Palin post, which I think is cool-headed and manifestly sane:
We must step up and engage in this most crucial debate. Nationalizing our health care system is a point of no return for government interference in the lives of its citizens. If we go down this path, there will be no turning back. Ronald Reagan once wrote, “Government programs, once launched, never disappear. Actually, a government bureau is the nearest thing to eternal life we’ll ever see on this earth.” Let’s stop and think and make our voices heard before it’s too late.
Kleefeld and others like him — the Andrew Sullivan post title is "Obama's Gonna Kill My Baby!" — would love to squelch that debate.