Global Crisis

As I watched the finale of Game of Thrones, I spent a lot of time thinking about sexualized shame. We're in a kind of ongoing conversation about internet shame lately, with much of the drama focused on white people who feel really uncomfortable being taken to task by historically marginalized groups (people of color). The status quo is so worried about these white folks that Jon Ronson wrote a whole book about them, and keeps taking to the internet to tone police us.

Me, I'm worried about when shame interacts with power, rather than when people without power collectively use shame. One way is to think about punching up/punching down, but first of all - I don't like punching. Second, I think the simple verticality of power spectra is almost never clear (this is true for comedy).

Instead, I recommend thinking about whether a given situation undermines hierarchies and stereotypes or replicates them. When Tim Hunt is called out for his sexism, the collective action undermines hierarchies. When Adria Richards was harassed out of her job, the collective action replicates and reinforces hierarchies.

Recently, Jeb Bush's 1995 call for more public shaming came to light. His actions as a governor reinforcing that shaming mentality did likewise. In fact, the public shaming of women for their sexual choices has a long history and remains a fully modern aspect of our society today.

In Salon, I wrote about the 13-year-old girl Izabel Laxamana, who killed herself after her father shamed her for sending a selfie. I wrote about Jeb Bush. I used Cersei Lannister as a jumping off point, because too many responses to that pointed at the scene as a kind of thing "other people" do. It's not. It's us.

And then we come to Bush’s anti-choice credentials. At its core, the discourse of anti-choicers embraces the need to shame women for their sexual choices, functioning as what Amanda Marcotte calls “the sex police.” For single women in particular, the anti-choice movement wants their decision to have sex visible to the world, a warning sign to others. And Bush’s anti-choice credentials — again, drawing from his history as governor — are severe. In 2003, Bush declared himself the “most pro-life governor in modern times.” He fought to keep an intellectually disabled rape victimand, in 2005, a 13-year-old rape victim, from having abortions. He now says he is willing to consider a rape and incest exception to a ban on abortion, but that’s it. For all other women, in the views of Bush, the decision to have sex is a public matter.
Shame is a powerful tool. It can be used to shed light on prejudice and injustice, but the power dynamic between a state and a woman being shamed by the state is inherently abusive. When we take a scene like Cersei’s walk and justify it as a dramatic re-creation of a bygone era, or the kind of thing that only happens in other places, we miss the ways such dynamics continue to play out in our society. That’s not a criticism of “Game of Thrones,” but a criticism of us.
The public shaming of women in order to control female sexuality is not a medieval throwback or a fictional problem, but a major part of our culture today. It killed Izzy Laxamana. And it’s still being perpetuated by at least one man seeking to become the most powerful person in the world.

Public shaming has a body count.

UPDATE: I am leaving the essay below as is. I am increasingly persuaded by my smart interlocutors that the correct response to these kinds of essays is to offer empathy to the mother and to tell one's own story as best one can in one's own spaces. Thanks for all the feedback.

Websites and newspapers like publishing Down syndrome and other disability abortion narratives. They like them almost as much as Heroic Mother/Father/Child narratives. The pattern is pretty clear - a mother says that she got her diagnosis, was deeply upset, terminated, and remains upset about it but pretty sure she did the right thing.

Let's get some ground rules out. I am pro-information, pro-choice, and anti-eugenics. I believe a woman has the right to have an abortion under any circumstances, for any reason, at any time. I want doctors and counselors to have access to the best and most current information, to offer that information to women, but its her choice whether she listens, whether she takes it into account, and what she does with her body.

I am, though, concerned about our ongoing and intensifying eugenic age. I frequently say that what's going on with prenatal testing is just a test run for the future of human procreation, and it's a test we're largely failing. Gene editing is coming, and as Wired published, we need to figure out the ethics of that now! I believe our future is one in which disability codes increasingly for poverty and lack of access to modern medicine. I call it the "Gattaca scenario," and it doesn't make me happy.

These two above paragraphs require me to walk a very, very, fine line, and I make mistakes trying to do so all the time. When I read disability selection termination narratives, I always run the risk of rendering judgment for a woman making a choice I don't like, and that plays right into the hands of the anti-choice movement.

That said, the decision to write a public essay about one's abortion is different than the decision to have an abortion. I do think  - I hope and trust you, dear reader, will let me know if I'm wrong - that there's room to engage with the rhetoric of these essays without rendering judgement on the choice of the woman herself. That's what I'm going to try to do below.

Here's one from Yahoo! Parenting in February -  The mother got the diagnosis and then made a decision to abort. Again, her body, her choice. But here's how she describes the process.

I didn’t want to keep the baby. My child deserved better than a life of struggle and frustration due to a condition that he or she would never be able to change. Plus, there was no predicting the severity of the disorder — some children with Down Syndrome are able to feed themselves and attend school; others require more urgent and consistent care. Knowing that my husband and I wouldn’t live long enough to provide the necessary long-term care for our child was stressful, to say the least. I did not want him or her to ever feel lonely, lack independence, or be confined to a nursing home when we passed on.

“Do you remember the people who live in Nana’s nursing home — the ones who aren’t elderly?” I tried explaining to my husband. Mostly they just sat in their wheel chairs, staring into space. “No one comes to visit them,” Nana had said, adding that most had older parents who’d already passed on. My husband listened, then resumed his search...

 On our way home, we stopped at a sidewalk cafe. There I noticed an older couple with their son who appeared to have Down Syndrome. They were trying to prevent him from running out into the street so they could hand-feed him a slice of pizza and wipe his face with a napkin. Though he behaved like a rambunctious toddler, I wondered if he were a teenager or older (it’s often difficult to determine the age of someone with Down’s). I looked at my husband. He had noticed them too.

Notice there's no actual information there. There's supposition, fear, and a chance encounter on the street. This essay reinforces the notion that Down syndrome equals suffering, an argument that in fact vast reams of data contradict. The woman in question is, of course, under no obligation to engage with that data when making her decision. But is it fair to ask her to engage with it when writing an essay that has been shared almost 17,000 times on Facebook?

That's not a rhetorical question, but a genuine one, especially for my pro-choice friends. Is it fair? Or does it play into the hands of anti-choice ideology?

People are going to read this essay and some will cast judgment (the Down syndrome community is not happy about this piece). Others will sympathize and agree that a disabled life isn't worth living if you can avoid it.

I keep being drawn to this line: "I did not want him or her to ever feel lonely, lack independence, or be confined to a nursing home when we passed on." People feel lonely. People lack independence. Sometimes people live in institutions.

This week there was a similar piece on XOJane - "IT HAPPENED TO ME: I Terminated a Planned Pregnancy: How my second pregnancy became a mother's worst nightmare."

I called my husband and he headed home from the city. As I waited for him, I spent the next two hours googling this chromosomal abnormality on my phone and wondering "What did we do? How did this happen? Was there something we could have done?"

When my husband arrived, we met with the geneticist. She told us that the blood test I had taken had indicated that the chances were 99 percent that our child was affected by this condition and that we needed an amniocenteses to confirm. She then described in detail the obstacles that we, our son and, potentially, our daughter could face with the arrival of this baby. She explained that it was totally random and there was nothing we could have done and no way to cure it. I scheduled the amnio for the next day.
In the morning, we went back to maternal fetal medicine. I didn't even feel the needle in my stomach and couldn't look at the sonogram screen. On Friday the preliminary results were confirmed.

Over the next few days, we spoke to expert after expert and it became clear that we would have no choice.

Overall, this is better than the Yahoo piece, but again something is missing. She says it wasn't Trisomy 21 (Down syndrome), but it was a chromosomal abnormality. The essay works pretty hard at avoiding naming the abnormality, but I'm guessing it was one of the other trisomies - many of which produce non-viable fetuses or infants with a very short lifespan (Trisomy 18 gets news because Rick Santorum has a child with Trisomy 18 and writes about it in anti-choice media).

Again - is it wrong for me to want this essay to explain the parameters of "no choice?" Can I ask for that while still unambiguously supporting reproductive rights? I'd like to know what the condition was and why she felt she had no choice. I feel that writing this essay without that information leaves the reader feeling like any diagnosis of chromosomal abnormality, according to "experts," mandates termination. That's simply not true.

These are things I'm struggling with in my attempt to find that pro-choice and anti-eugenic rhetoric. I think it's vital work, not just for the Down syndrome community, but because this is the near future of human procreation.

I am extremely open to criticism on this one (ideally on everything, but especially here) from my pro-choice friends and readers. Does questioning the rhetoric of these narratives, these public essays, feed anti-choice ideology, especially when it comes from a male writer like myself?

As we head into the 2015 legislative session, we need to be prepared for anti-choice filed a bill last week to prohibit abortions based on fetal determinations of sex or potential disability. The proposed Indiana bill is very similar to legislation that failed to pass in last year’s session and mirrors a North Dakota bill that did pass in 2013. Regardless of this bill’s progress, it should serve as a warning to pro-choice disability rights activists of the legislative maneuvers sure to take place in the coming months.
individuals and groups to use the issue of disability-selection abortions to try and widen the divide between disability rights activists and those working for reproductive rights. It’s already begun in Indiana.

Here's the bad news - The bill is, in fact, advancing. And here's the worse news - A similar bill has been proposed in Ohio.

A yet-to-be introduced bill would prohibit abortions sought because a pre-natal screening or diagnostic test showed the fetus could have Down syndrome, also known as trisomy 21. The genetic disorder causes developmental delays and intellectual disability of varying degrees. Mike Gonidakis, president of Ohio Right to Life, said details such as how the law would be enforced are still being determined as the bill is drafted.

This language is being pushed by anti-choice organizations in collaboration with their favorite lawmakers. It is the a new front (there are so many) of the abortion wars, and pro-choice anti-eugenics pro-information advocates need to be ready.

What's more,  the anti-choice lawmakers are doing the usual deception that this is pro-woman. The co-author of the bill said:

Bill co-author Sen. Liz Brown, R-Fort Wayne, said physicians too often steer women toward decisions without giving them enough information.
"I think what we're seeing today is a rush to judgment," Brown said.

There is just enough truth here to be dangerous. In fact women do make the decision to terminate the pregnancies based on partial or erroneous information, as Mark Leach discusses here. However, if Brown is really concerned with information, then pass a pro-information bill mandating physicians and genetic counselors provide full and accurate information. Instead, Indiana is going another direction.

Other lawmakers in Indiana have introduced a faux-information bill, following Louisiana in an attempt to hijack the pro-information coalition and bend it to serve anti-choice needs. I wrote:

In my RHRC essay I stated that pro-choice disability rights advocates like myself must agree that disability-selection abortion should be legal AND agree that talking about eugenic principles at play in such abortions can be discussed without undermining choice.

With right-wing legislators using pro-information as a way to further restrict access to reproductive choice, I don't know that I can make that second statement in good faith. I don't know that I can advocate for pro-information bills anymore.

In general, conservative legislatures pass anti-choice bills while simultaneously removing social supports for poor families. Even when the bills explicitly deal with disability-selection abortions, as in the two Indiana bills, they are not disability rights legislation. They are attempts to divide and conquer.

The state has no right to control women's bodies. The state also has no right to mandate health care providers lie or conceal  information from pregnant women.

And other right-wing states are sure to follow, because the national anti-choice organizations are drafting legislation and passing it around. Be ready.

OPINIÓN: No debemos temerle al síndrome de Down http://t.co/3YRfPluotm pic.twitter.com/zKsFTjcSgO
— CNN en Español (@CNNEE) February 19, 2015

I have a new piece up at CNN (here's the English language version. I've just never, to my knowledge, been translated before, so sharing this!). I try to make some big points, but at the core there's an amazing story.

I got a message about an expectant mother of twins, one of who had Down syndrome, who was thinking about leaving her child with Down syndrome at the hospital (under safe haven laws this is not a crime). Still, it's not the best answer, so I got in touch with a friend, Amy Allison, who then put me in touch with Stephanie Thompson, the head of the National Down Syndrome Adoption Society. Stephanie reached out to "Jane," the mother, and eventually Jane decided to keep both children. To my mind, contact with the community - information - helped ease the fear of the unknown.

Here are a few points I want to emphasize:

1. I did nothing much. This isn't a story of me saving the day, but just sending a couple emails. As a result, lives changed. That's astounding.

2. We don't know the end of the story. This is not a "happy ending," but a better beginning. I wish Jane, her spouse and her children the best, but I also don't want to pretend the challenges aren't real.

3. This argument applies to all kinds of niche groups. The link was dropped in edits, but I wanted to link to Seth Mnookin's New Yorker article on fighting rare diseases. I know many people in the Queer community feel similarly that internet contacts are amazing for people, especially kids, who are isolated. There's a dark side too - hate groups find these connection tools equally powerful.

4. I cannot imagine a more pro-life story than this one. It's about a family trying to stay together after receiving better information and good contacts. I am, as anyone who reads me knows, pro-choice and anti-eugenics. I want people to choose life. I want people NOT to choose to abort based on pre-natal diagnoses of disabilities. But it is NOT the job of the state to regulate women's bodies. It is not the job of the state to make abortion, of any kind, illegal. It is ALSO not the job of the state to practice eugenics itself. Pro-choice, pro-information, anti-eugenics.

Now that stance is going to upset some of you in the Down syndrome community, and I regret that. What I really regret, though, are the reactionary voices who, because they disagree with me on abortion, can't celebrate the story I'm sharing here.

The Jérôme Lejeune Foundation is a strongly pro-life Down syndrome group. We don't see eye-to-eye on many things. But in the end, both of us want better lives for people with Down syndrome and to help parents, children, adults with Down syndrome, and communities do better. So they shared my story. And then came the reactionary backlash.



Sullivan basically wants to exclude anyone from the Down syndrome community who doesn't cleave to his hardline on abortion. He enters threads and demands that every conversation be solely about abortion and banning abortion. He's not alone, but rather an egregious example of a type.

So let's be clear. I welcome collaboration to my pro-life colleagues to our ongoing efforts to make life better for people with Down syndrome and other disabilities. I will try to persuade you that state regulation of women's bodies is not an ethical OR practical solution (it will just made Down syndrome code for poor as, elites will continue to abort, for example). I expect you to try to persuade me that I'm wrong. I am ready for that debate.

We have to build coalitions. I'm here. Are you?

Last week I wrote about a new bill in Indiana that forbids disability-selection and sex-selection abortion. The latter almost never happens. The former happens all too often. The combination is an attempt to do two things: 1) split the pro-choice and disability rights movement and 2) gain support for abortion restrictions by nominally pro-choice individuals who nevertheless feel uncomfortable with these kinds of selective abortions. In the linked piece, I talk about the bill and the intersectional approach that we need in response.

I also discussed a bill that did pass last session in Louisana. It's nominally pro-information, but as I've posted about before (here's my blog post, a guest post that I hosted, another good essay), it distorts a movement based on coalition building and makes it just another tool of the anti-choicers. Instead of presenting all the information, the whole point of pro-information as a concept, it makes it illegal for doctors to present termination as a "neutral or acceptable" option. If this continues, the pro-information coalition will dissolve.

What I didn't know is that another Indiana legislator has proposed a bill with the same language as in Louisana (a lot of this legislative language gets written by interest groups and disseminated, so it's not a surprise they copy each other.).

HB 1093 in Indiana "Requires the state department of health to collect certain information to be disseminated by health facilities and health care providers to parents who receive prenatal or postnatal test results for Down syndrome or any other disability."

That's pretty typical and I am in favor of accurate information. I know far too many people who were told simply false information by the medical providers after getting a pre-natal diagnosis, or, more commonly, were simply not told relevant details about the changing nature of life with Down syndrome. We should all be in favor of accurate information.

HB 1093 though follows the LA bill in inserting this clause:

"The information does not engage in discrimination based on disability or genetic variation by explicitly or implicitly representing pregnancy termination as a neutral or acceptable option when a prenatal test indicates a probability or diagnosis that the unborn child has Down syndrome or any other disability."

Several thoughts.

This could mean the end of the pro-information coalition. In my RHRC essay I stated that pro-choice disability rights advocates like myself must agree that disability-selection abortion should be legal AND agree that talking about eugenic principles at play in such abortions can be discussed without undermining choice.

With right-wing legislators using pro-information as a way to further restrict access to reproductive choice, I don't know that I can make that second statement in good faith. I don't know that I can advocate for pro-information bills anymore.

In general, conservative legislatures pass anti-choice bills while simultaneously removing social supports for poor families. Even when the bills explicitly deal with disability-selection abortions, as in the two Indiana bills, they are not disability rights legislation. They are attempts to divide and conquer.

Hopefully, disability advocates, many of them in fact not as pro-choice as I am, will work to defeat or amend the bill in Indiana. Otherwise, I can't be a part of the pro-information coalition and will start strongly advocating for others to reject the model as well. Because even if some states pass neutral bills and others pass these faux-information laws, the former feed the latter, and we'll have to stop the whole project.

The state has no right to tell doctors to lie or conceal information from expectant mothers.

I have a new piece up at Reproductive Health Reality Check. It continues to explore the themes of how we generate a new rhetoric for people who are pro-choice, pro-information, and anti-eugenics.

It takes as its lede a story about a woman who wishes she had aborted her child with Down syndrome, born these 47 years ago. Rather than condemn her choices then or her wishes now, I try to unpack her narrative to think about what it says regarding hardship and advocacy.

I write:

Relf wrote that while she loves her son, she wishes she had aborted him. For parents of fetuses with Down syndrome, Relf implied, abortion is the only way out of a lifetime of obstacles.

The broader Down syndrome community of parents typically responds to stories like these with outrage or sadness. Instead of acknowledging the validity of the hardship narrative, we often chooseto promote superficial cute and happy imageries of life with Down syndrome, as if to acknowledge the challenges would be to promote aborting fetuses with disabilities. We, too, have bought into a narrative of limited, inaccurate choices: that someone must either constantly celebrate Down syndrome with no discussion of the difficulties it can present, or effectively be supporting eugenics.

I argue we need something more complex:

So here we have two different false binaries. Neither is true; both remove the agency from people with Down syndrome. Furthermore, neither identifies the clear missing piece—what if, instead of leaving people like Relf isolated and struggling, we identify ways to build a robustly inclusive and caring society? What if we fight to expand access to support for all parents? We can break these dualistic fallacies apart.

So that's where I stand, at least for now, as my understanding develops. Working to make a better world. Working to make sure prospective parents get the best information possible. And then respecting whatever choices such women make.

I often say that the world of prenatal testing for Down syndrome is a test run for the future of human procreation, and that it's a test we are generally failing.

It seems to me that as our access to pre-natal information gets better and better, cheaper and cheaper, more and more accurate, we slide inexorably towards what I call the GATTACA future. The rhetorics, laws and best medical practices we develop around testing for Down syndrome, the first common condition (more or less) detectable non-invasively and early in pregnancy, will shape the way we handle the next wave of advances. Already, individuals with certain genetic risk factors for fatal conditions can get in-vitro fetuses screened before implantation. I am sure that wealthy individuals are also already traveling abroad to create designer babies, a technology that is only accelerating.

Slippery-slope arguments are always tricky, but this slope looks pretty clear to me. In the world of Down syndrome, two technologies are racing each other. One - testing - enables early abortion. The other - medicine intended to improve cognitive function - not only might ameliorate some of the hardships generally associated with Down syndrome, but might also transform societal impression of the disability.

Meanwhile, the pro-life side increasingly radicalizes, turns violent (rhetorically and actually), and successfully restricts access to abortion across the country - and uses Down syndrome as a wedge issue - it becomes harder for a pro-choice voice like me to raise concerns about the way decisions are made.

I believe, without equivocation, that access to abortion should be universal, affordable, protected by law, and solely the choice of the woman.  But I also believe that in making such choices we reveal all kinds of underlying principles about what is valued, what is good, and what is normal. In general, disability is perceived as none of these things. I am trying, and mostly flailing about, to develop a pro-choice and anti-eugenic rhetoric.

I am writing this because Katha Pollitt has a new book out called Pro, which I haven't read yet, and did an interview in the New York Times. She, too, is interested in the rhetorics of abortion and is trying to change the conversation from "safe, legal, and rare" to "safe, legal, and available." Rare places a moral weight on abortion so that even if it's legal, that legality is grudging, and there's an idea that there's a right amount of abortion. She's working against the right-wing fanaticism, and good for her.

But then she wrote:

Q: Are there any arguments on the other side of the debate that either give you pause or that you respect on a purely intellectual (if not practical) level?

A: Someone (actually, a pro-choicer at a Planned Parenthood fundraiser) said to me, it’s okay to say you’re not going to have a baby now, but it’s wrong to say you’re not going to have this baby now. I struggle with abortion for, say, Down syndrome. At the same time I ask myself: if Down syndrome could be prevented, that would be a good thing, so why does abortion feel different, since it’s not yet a person? I don’t find the anti-choice perspective intellectually persuasive at all — the personhood of the fertilized egg, sex as a kind of contract to have a baby. But emotionally there is something appealing about accepting life with all its imperfections and difficulties and even sorrow, rising to the occasion and making something good out of it.
The problem is they want to force this view on others, and by others I mean women, because they have no more interest than the culture at large in demanding real sacrifice by men who get women pregnant.

Pollitt and I are roughly on the same page in all but one phrase. She says - there's something appealing about accepting life in all its forms. I agree. Not just appealing, in fact, but important. If a diverse society is important, if a diverse society is a better society, than neuro-diversity and physical diversity and chromosomal diversity has to be part of that. I suspect Pollitt would agree (we chatted briefly on twitter and I sent her an email at her invitation).

Furthermore, I share Pollitt's deep anger at the right-wing for trying to force such views on women, especially because too many "pro-life" people also don't want to pay for better schools, medical access, accessible buildings, integrated work opportunities, and all the other things. Disability is expensive. Pro-life people should demand the state pay for such expenses to the extent necessary.

But I'm not here to talk about the right-wing's endless hypocrisy, but rather to focus on just this line: "If Down syndrome could be prevented, that would be a good thing."

Would it be? What does prevented mean?

• Injecting magic stem cells into a fetus with Down syndrome and have the fetus develop without chromosomal abnormalities? (proposed, unlikely)
• Aborting every fetus with Down syndrome? (not happening, but happening plenty)
• Finding a drug combination that works against the general cognitive delays associated with Down syndrome (in clinical trials now)
• Building a more inclusive society to help bear the weight when things get hard, as they do? (depends where and who you are. Pretty good in the suburbs).

Get it? It's a roundup!

Today is Sunday. I am not watching the NFL. 

I am shifting my attention to an issue on which I think we can all agree: Final approval for a job cannot take place weeks after a professor has started his or her classes.

Can you please, in a comment, in an email, on my public facebook thread, or even on twitter tell me the timing of your final reviews for new hires at your school? I need to get a sense of how common this kind of delayed rubber stamp is.

I think this is really important and now is a moment we can focus on these practices and, at least in some case, change them.

Finally, I had a brief Q&A with John Scalzi on his newest book, last Monday. Feels like a long time ago before all my writing descended into this fairly grim place. Yay interesting speculative fiction. Reading fun stuff - Now that's a good way to spend a Sunday.

I've been busy researching several new pieces this week so the blogging has been a bit light. That's likely to continue next week as well. Bear with me! Good stuff is coming.

Nancy McCrea Iannone argues that the new Louisiana law on pre-natal testing inserts abortion politics into what had been a non-partisan movement by forbidding health-care providers to present termination as a neutral or acceptable choice. 

Comments from David Perry on this post can be found here.

Pro-Life, Pro-Choice, Pro-Information: Proceed with Caution

by Nancy McCrea Iannone.

The Louisiana Legislature recently passed a law requiring health care providers to provide information to expectant parents receiving a Down syndrome diagnosis. While the law follows the positive and rising "pro-information" trend among the states, the Louisiana statute deviates from this trend significantly. Louisiana added a requirement that the information the Department of Health and Hospitals gives to health care providers, and which the providers are required to give out to patients, "cannot explicitly or implicitly present termination as a neutral or acceptable choice."

"Pro-information" is the word that many members of the Down syndrome community have used to describe the movement in support of expectant parents receiving accurate, balanced, and up-to-date information about Down syndrome after a prenatal diagnosis. The pro-information movement includes both pro-life and pro-choice members, united in the common mission of supporting and informing expectant parents.

Louisiana has taken an efficient, unifying model pro-information law and has tinkered with it, creating a situation which is more complicated for health care providers and potentially much worse for parents receiving a prenatal diagnosis of Down syndrome. In the history of the pro-information movement, Louisiana's actions stand out as a major and harmful setback. Recent history provides the context for Louisiana's legislation as well as solutions for the problems this legislation creates.


In 2007, two senators from opposite ends of the political spectrum introduced the "Kennedy Brownback bill," a pro-information bill. It required health care providers to provide up-to-date detailed information to parents receiving a prenatal Down syndrome diagnosis. Sometime after it unanimously passed the Health Committee, the language was altered. The requirement placed on health care providers was deleted, and in its place appeared a much softer directive to the Secretary of Health to provide funds to a "grantee" who would, among other things, provide patient resources to health care providers. Written in this way, the Prenatally and Postnatally Diagnosed Conditions Awareness Act passed. Its passage excited advocates for people with disabilities, but as the bill was weakened and never funded, it had no impact on a federal level.

As advocates realized the failings of the federal law, individuals and organizations in various states proposed legislation to their lawmakers. The proposed language mirrored that of the original Kennedy Brownback bill, requiring health care providers to provide certain information to their patients receiving a diagnosis. Now, states such as Massachusetts and Kentucky require physicians to provide up-to-date information which has been reviewed by Down syndrome organizations as well as medical experts. This criteria was written with the Kennedy Foundation's booklet "Understanding a Down Syndrome Diagnosis" in mind, a booklet edited with input from representatives of major medical groups and national Down syndrome groups. It covers all pregnancy options, including termination, as was required by participating medical groups and understood by the Down syndrome groups.


Louisiana's exclusion of termination in its state-mandated Down syndrome materials flies in the face of national, historic efforts to provide a unified approach to prenatal information and it threatens to harm the cause of providing accurate, up-to-date information to pregnant women and their health care providers. Beyond destroying the original unity between left and right, beyond ignoring the hard-fought consensus among representatives of medical and Down syndrome groups, Louisiana's legislation creates a very difficult situation for providers and patients alike. While providers in Louisiana are now bound by statute to distribute termination-free information, they are equally bound by law and professional ethics to inform patients about the option of termination. Louisiana is one of the many states in the country which recognizes wrongful birth/ life claims, which leaves providers who fail to provide diagnosis and termination information subject to liability. Such lawsuits use standard of care as a guide. Providers look to professional organizations such as the American Congress of Obstetricians and Gynecologists and the National Society of Genetic Counselors for such standards. These organizations include termination as information which must be provided to patients after diagnosis.

Thus in order to meet all of their legal obligations, Louisiana health care providers must give out the termination-free materials provided by the state, and also separate termination-present information. What form will the latter take? Will it present the option of termination delicately and neutrally as the Kennedy Foundation's booklet does? Or will providers look for strongly-worded pro-termination information to balance the perceived pro-life information provided by the state? Or will providers talk of termination with whatever bias they already have, be it a pro-life, neutral, or pro-termination stance?

In Louisiana and in other parts of the country, the short-sighted efforts of some advocates are set to backfire. They are desperately working to purge prenatal information of all mention of termination, even in neutral form which provides evidence-based information about the possible emotional impact of termination after diagnosis. In doing so, they seek to give up that neutral presentation of termination in favor of a presentation which will vary wildly among health care professionals depending on their biases. This is an enormous set-back to the "pro-information" cause, brings the credibility of Down syndrome information into question due to the perception of a "pro-life" slant, and leaves the field wide open for an unpredictable variety of termination materials given to expectant parents.

Hopefully, health care providers in Louisiana will supplement the state-forced materials with the Kennedy Foundation's booklet, which will allow them to meet all legal and ethical obligations and still present neutral information. These booklets are the only booklets to be recommended in the guidelines of both National Society of Genetic Counselors and American College of Medical Genetics and Genomics. These booklets can be obtained at Lettercase.org.

In the meantime, various states across the country continue to consider and pass legislation which hold true to the original mission of a unified approach to prenatal information. You can keep track of these efforts here on Mark Leach's blog DownSyndromePrenatalTesting.com.

The Louisiana legislation will prove logistically problematic for health care providers in that state who wish to provide accurate, balanced, neutral information while meeting their legal and ethical obligations. More worrisome is the potential impact on the rest of the states if Louisiana's actions cause a ripple effect. The pro-information movement has been able to keep itself relatively free from partisan divisions because of the priority of providing accurate, medically approved materials to expectant parents. If there are more versions of "pro-information" legislation which exclude even neutral mention of termination, the movement may be destined to disintegrate into the typical red state/ blue state divisions. Advocates can prevent this by being aware of the potential implications of tinkering with the model language, and advising their lawmakers to keep focused on the goal of providing accurate, balanced information to expectant parents.

Nancy McCrea Iannone has been providing active support to expectant parents on Baby Center’s Down Syndrome Pregnancy discussion board since 2006. The story of her daughter’s birth is contained in Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (“A Hopeful Future”) and Gifts II: How People with Down Syndrome Enrich the World (“An Enlightening Snow Day”). Nancy is the co-author of the book Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome and the booklet “Your Loved One is Having a Baby with Down Syndrome.” Both of these publications and additional resources can be found at DownSyndromePregnancy.org, part of the National Center for Prenatal and Postnatal Down Syndrome Resources.

Amy Julia Becker provided editorial assistance for this post.

President Obama


Huh?
We interrupt the normal broadcasting of this blog to bring you a timely article on a subject few Americans seem to understand due to the media blackout imposed by God knows who in the USA.  Warning: Readers outside the USA may or may not be interested.

Many people in this country are only recently beginning to disentangle two separate issues having to do with President