Down syndrome and Anti-Choice Propaganda

New in Pacific Standard:

Since the Eighth Amendment of the Irish Constitution was signed in 1983, granting equal legal rights to fetuses and pregnant women, it has functioned as a total ban on legal abortion. Next May, Ireland will hold a referendum over whether to repeal the amendment, and current polling suggests that pro-repeal will carry the day. The Irish people will also vote on whether to endorse a new law legalizing abortion within the first 12 weeks of a pregnancy, which Parliament would then pass following a successful referendum. Just getting a vote officially set has taken years of work by numerous campaigners, organizations, and politicians. Now, as the date for the vote looms on the calendar, the anti-abortion movement in Ireland has fixated on a new symbol for its campaign against reproductive rights: cute kids with Down syndrome.

Over the past few weeks, two anti-repeal groups have launched new campaigns and produced posters featuring images of children with Down syndrome. The ads play on a combination of legitimately disturbing data about abortion rates following a prenatal diagnosis and the relatively positive feelings that voters hold about people with Down syndrome themselves. What's disingenuous is the way the campaigns suggest that the current total ban on abortion is all that's keeping Ireland from eradicating Down syndrome. That's not true on the facts, but the campaigns demonstrate the perceived iconographic power of using disabled children as symbols for anti-choice political campaigns. Meanwhile, the whole conversation about Down syndrome in both Ireland and the United States too often gets stuck on prenatal issues, a fixation that does little to change the status quo for anyone living with disabilities, now or in the future.

PLEASE READ THE WHOLE THING 

Ohio Abortion Ban

It's happening. Ohio is going to pass an anti-choice bill that criminalizes speech between a woman and her doctor. I wrote about the ban here. Kasich will surely sign it. I'm pretty livid.

This won't help people with Down syndrome. It's not intended to. It just keeps spreading stigma on the one hand, while serving as a vehicle to restrict reproductive rights on the other.

STOP POLITICIZING MY SON

NEW AT PACIFIC STANDARD: Ohio uses Down syndrome to attack reproductive rights.

Ohio Republicans are the latest group to seize on Down syndrome as a wedge issue in the fight against reproductive choice. Senate Bill 164 would make it a felony for doctors to knowingly perform an abortion after a prenatal diagnosis of Down syndrome.

A few things to make clear: I am the father of a 10-year-old with Down syndrome. Nobody has more concerns about the rights of people with Down syndrome than I do. Yet I stand unequivocally opposed to this bill. It will not help people with Down syndrome. Even assuming it survives legal challenge, it is unlikely to result in fewer abortions. What it will do, however, is criminalize speech between a woman and her doctor. It will intensify the very stigma that drives so many people to terminate otherwise wanted pregnancies after they receive a prenatal diagnosis.

These bills piss me off.

Once Time Boy. Hero.

I wrote a story about my son watching the third Harry Potter movie, signing "deer" during the Patronus scene, and his engagement with stories. It's a fairly serious piece, wrapped about some tearful and sweet moments, about presuming competence in an ableist world.

Here’s why all this matters. Presuming competence is a fine concept, but hard to execute in practice. Our society and its people are deeply steeped in ableist concepts relying on assessing skills and deficits, intelligence and abilities, based on highly prejudicial concepts of normal. No matter how enlightened one wants to be, it’s hard to go about presuming competence without evidence. So when my son cheers for Rey, Moana, or Harry, he’s not only showing me that he’s engaging with stories, but also telling me to remember that he’s competent in all kinds of other ways he can’t yet prove.

Sometime last fall, I told my son his usual good-night superhero story, which he capped off with “the end.” Then he grinned, and said, “once time boy. Hero.” Lying on his back, he raised his arms into the sky and made superhero flying sounds (a kind of whooshing sound). “Nico. The end.”

J.K. Rowling read it.

This is so beautiful, it made me cry. https://t.co/TA9FHqVDyh

— J.K. Rowling (@jk_rowling) January 13, 2017

@Lollardfish Thank you for sharing yours. Give my love to both your children x

— J.K. Rowling (@jk_rowling) January 13, 2017

Additional pieces on narrative and my kids:

• I transcribed a superhero story that my daughter told to my son.
• I took a walk with my son and we saw some deer, a story with pictures!
• I wrote about narrative deployments of disability in literature.

Disability and Media: Inspiration Matters

Here's a nice story about Craig Blackburn, a man with Down syndrome who plays Santa. It could so easily veer fully onto the Inspiration Porn side of the disability news spectrum (it's not an either/or), and the title does go that way. "Metairie man with Down syndrome spreads cheer now and throughout the year" suggests that the story will be about how people feel about the man, rather than centering him.

But that's not what we get:

•  Blackburn gets to speak for himself. The whole story is not about how others feel about him. "Blackburn said his goals are simple: "To impact the lives of others by advocating for issues that will result in better lives for individuals with special needs. Success is not measured by competing with others, but by each individual living life to their greatest potential.""
• He speaks about his achievements: "I met all the requirements, never failed a class nor did I have to repeat a grade," Blackburn said. Now Blackburn volunteers a good portion of time doing work for the community, making it a full circle of sorts."
• The article talks about his broader life: "He has served as a motivational speaker since 2004. He travels independently throughout the United States delivering the messages of inclusion, ability and full participation in life for all individuals. In 2009, He delivered his first international speaking message in the Middle East in Doha, Qatar."

As I wrote about Alice Wong, the disability community needs inspiration. We need to be inspired by people doing inspiring things, not by disabled people just doing things at all. I'm especially interested in seeing norms shift in local news like this, for all the big national outlets do matter. This article is, in my estimation, a win.

Baseball and Brothers - Good Journalism on a Celebrity and a Disabled Sibling

The celebrity with disabled sibling genre of story tend to be pretty awful. The celebrity is asked about their sibling and, in response, the celebrity says things like overcome, inspiration, and other usual platitudes. This is partially because that's how we've learned to talk about disability, partially because celebrities sell clicks and so interviewer isn't really that interested in the disabled individual as a person, and partially because cliches are safe (as Bull Durham taught us).

Adam Newman, however, directed me to this story about a young player for the Dodgers and his older brother, Champ, who has Down syndrome.

This is a story in dialogue, with both men given equal time to talk about their relationship. The picture that emerges is meaningful reciprocity with some depth (especially given the format). Champ talks about his relationships with baseball players, his job, his aspirations, and his thoughts about Down syndrome. It's a really nice model of what's possible, especially nice to see in this context.

The Down Syndrome Memo

Here's the story. A woman agreed to be a surrogate mother, the fetus was diagnosed with Down syndrome, the couple demanded an abortion, the surrogate mother refused, the couple decided not to sue, and now the surrogate mother is living happily with her daughter and partner.

They wrote a book, Saving Delaney, and got a nice write up in People. I hope their book does great!

Here are two quotes from the piece, though, that trouble me.

Two months into Andrea's pregnancy in 2012, prenatal tests showed that the baby had Down syndrome, in addition to other complications, Keston, 50, tells PEOPLE.

Doctors had said that the unborn baby, nicknamed "Peanut," would most likely suffer from blindness, autism and a severe heart condition – if she survived birth.

What the doctor said here is wrong. Factually wrong. I've talked to hundreds of parents over the past few years who have similar narratives, sometimes worse (child will die!), sometime less about the child (your marriage will end!), and all wrong. This is why I'm pro-information, and I want laws with teeth that demand doctors provide accurate information.

Doctors like this piss me off.

But I was also troubled by this:

"Delaney did not get the memo that she has Down syndrome," says Keston. "It does not limit her. She talks and she says sentences at two. She plays video games and Barbies with her siblings. She loves to dance when Ellen DeGeneres is on TV. When we watch her show, Delaney's got to get up and bust a move with Ellen."

I'm glad Delaney is doing well, but we must stop arguing that our children have value based on function. My son, 9, doesn't talk. Did he get the Down syndrome memo? I'd like the mothers (with whom I've discussed this on Facebook), as they move into this highly public phase of talking about Down syndrome, to be deeply conscious about how their "function-based" claims of value for Delaney exclude less functional people. I know it's unintentional, but the exclusion happens anyway.

And what if, 10 years from now, Delaney in fact has severe delays in some category? That will make her life no less valuable or their story no less awesome.

I was going to write a long essay about this, but instead, Meriah Nichols did it first with: Let Down Syndrome Define You.

Moxie, my love. It seems that some kids aren’t getting the memo that they have Down syndrome.

Seems like some parents are tickled that their child with Down syndrome is acting more like a typically developing child than not. That is, when their child is growing, learning, speaking, moving and acting as a typically developing child would at the same points in time. They don’t want their child to be “defined” by Down syndrome.

Moxie, I want you to get the memo that you have Down syndrome. And I want you to be defined by Down syndrome.

As my friend and writing partner Lawrence Carter-Long says ... SAY THE WORD!

"My Canada Includes an Extra Chromosome"

Don't miss tomorrow night's SEASON FINALE of the RICK MERCER REPORT at 8:00pm on CBC (8:30NT). Here's Rick's Rant.
Posted by Rick Mercer Report on Monday, March 28, 2016

Gorgeous rant about the Canadian eugenic immigration laws currently getting exposure.

When people say, "I'll move to Canada if Trump wins," I think - not me, not unless I want to leave my son behind.

Story on the family threatened by these laws.

Also elsewhere around the world.

Disability and Race: Testimony from Autistic Hoya

Great writing from Lydia Brown on healthcare disparities for disabled people of color.

From both personal and professional experience, I am keenly aware that healthcare disparities are one of the most insidious and pervasive forms of discrimination impacting any underrepresented or minoritized group. These disparities are evident in quality of care, diagnostic accuracy, network adequacy, service delivery models, multicultural competency, and overall health outcomes. These disparities result in lower life expectancy, less access to any healthcare including mental health services, and other deleterious effects on well-being and social stability.

Read the whole testimony here.

Here's a post on racial disparities in the Down syndrome community from Stephanie Holland.

Give AnnaRose the Camera!

There are two distinct types of message driven inspirational videos. One type focuses inward at the community it represents; the other pushes outward.

#HowDoYouSeeMe claims to be directed outward. The makers and their PR folks claim that its goal is to change the way people see Down syndrome. In fact, headline after headline over the last few days have been telling us that the video has already changed the way people see Down syndrome, thanks to Olivia Wilde. Nothing like inspirational feel good + celebrity clickbait to get people over to your website.

My thesis: Basically no one's view of Down syndrome has been changed by this video, at least not as the makers intended. No one has watched this video and had a transformational moment after the reveal. No one sees the video and comes away with new realizations about the full humanity and complexity of people with Down syndrome. Rather, the focus of the press has been classic inspiration porn gushing over the famous abled person giving her time to this worthy cause.

It's arguable that the video is a much better job at the second task – building community among the already persuaded. The video confirms the feelings that people Down syndrome matter among people who already believe it. The production values, the celebrity involvement, and beautiful words spoken by Anna Rose, promote good feelings among people who already feel good, and thus the video gets shared by folks who mean well. Everyone behind the video means well. Everyone who shares it means well. But it just doesn't "change the way you see Down syndrome," no matter how much the makers want to make that claim.

In my Establishment piece I focused on the wonderful video from Argentina (the tl;dr is watch this; not that) because I think it really does change the way people see Down syndrome, including for parents like me.

Our image of Down syndrome is white, cute, and compliant (and generally a child). This surly teen in his Ramones t-shirt, his leather wrist cuff, cutting school and jamming in the park with his friends, then riding mass transit alone, changes the way Down syndrome is generally portrayed. I'm wildly for it. I was glad that Born This Way had a black man with Down syndrome and an Asian woman with Down syndrome as two of the characters. Best of all, the "Libertad" video shows rather than tells, then concludes with the filmmaker (who also has Down syndrome) making a few comments AFTER the viewer has already been persuaded. 

The Olivia Wilde video – notice how everyone calls it the Olivia Wilde video – tells rather than shows. And when people complain, the makers and the supporters of the video continue to tell, and tell, and tell. If you have to keep telling, rather than showing, your video is a failure. 

In this self.com piece,  we get a few great quotes from AnnaRose. I wanted more. She's clearly a rivetingly interesting young woman with a lot to say about disability and identity.

So here's my proposal to CoorDown and Saatchi and Saatchi, the well-financed folks behind the "Olivia Wilde PSA." GIVE ANNAROSE THE CAMERA.

Give her a budget. Give her access to professional editors. Let her direct, star, produce, whatever she wants. Give her full control.

Then let's see what she can do. Now that would be changing the narrative.

Bioethics of Cognitive Drugs for Down Syndrome

"Ally’s story, and Penny’s story, don’t negate the significance of these new neurological findings, or the fact that drug interventions for cognition will come as good news for some people with Down syndrome. I am not certain that Penny needs medical interventions to improve her cognition, but I know she needs a social context that welcomes her."

Amy Julia Becker on the ethics of a "pill for Down syndrome," in The Atlantic.

I think about these issues all the time. There's a major trial going on in Chicago, in which we are not participating, but Nico frequently reveals frustration at his communication delays. If a pill could help him through those, I'm pretty sure he'd consent to it.

Testimony for Missouri Senate - SB 802

It's my understanding that the head of NARAL - Missouri will read this Testimony at a Senate Hearing for SB 802, a bill that make it illegal to have an abortion after a pre-natal diagnosis.

Resources.

• SB 802 text.
• An article I wrote for CNN on the Ohio version of this bill.

My testimony:

I am the father of a boy with Down syndrome and am opposed to SB 802. This bill will not lower rates of abortion following a pre-natal diagnosis nor will it help people with Down syndrome.

1) The best way to prevent abortions after a prenatal diagnosis is to make the words "Down syndrome" less scary. These bills will make it harder, even criminal, to talk about Down syndrome and abortion.

2) The Down syndrome community broadly supports non-partisan pro-information legislation. We want parents who get a diagnosis to get the best possible information. Criminalizing abortion based on a prenatal diagnosis will just make it harder to talk about these issues. Missouri passed a pro-information bill in 2007 (L. 2007 H.B. 818 § 191.912). It should fully fund that bill.

3) Every day people with Down syndrome are exceeding the boundaries of what we thought possible in education, jobs, personal lives, and contributions to the community. All efforts should be focused on telling these stories and bringing these opportunities to more people. 

4) We know that many women terminate pregnancies after a prenatal diagnosis because they believe they cannot afford to raise a child with Down syndrome. The best way to change that is to better fund special education, healthcare, respite care, and all the other support services that our community needs.

Agent Carter > Born This Way

Born This Way was the new Down syndrome reality show that aired over December and January. I wrote a review of it here as basically fine TV limited by its artificial format.

Here, though, is a really detailed essay on the show including, wonderfully, interviews with self-advocates about watching it. Opinions, of course, vary widely, no one is really upset by the show (nor should be), but not everyone is deeply moved or think it's transformative. Here's my favorite interview.

For this article, Ms. Gehringer asked her son directly about the show and forwarded me the questions and answers.

Q: Would you like to hang out with the gang on “Born This Way?”
A: I don’t know. I don’t know if we like the same things.

Q: What did you think when the gal got upset when she heard the words Down syndrome?
A: It hurts her feelings. I would not say it to her.
Follow Up Q: Does it hurt your feelings when you hear Down syndrome?
A: NO! Why would it hurt my feelings? I’m not the same feelings as her. (Under his breath) Stupid question.

Q: What do you think when the guys were talking about dating?
A: (Very reluctant to talk about this with his mom). I don’t know. That guy should respect boundaries.

Q: I thought I heard you commenting about the one guy getting to live in his own place. What did you think about that?
A: I want a house with a yard for my dog.

Q: Do you want to watch more of this show?
A: No. “Agent Carter” is coming back on.

“So there you have it,” said Ms. Gehringer. “Apparently he was much more unimpressed than I thought.”

Hey, Agent Carter is back. Last year, a lot of people criticized the show for its relentlessly white cast (other than a jazz club owner), when New York in the 40s was a diverse city. I think the producers heard, as episode 1 engages directly with racism and segregation and had a handsome black male lead who (spoiler!) Peggy kisses.

ISIL and the Murder of Disabled Children

This Facebook post from Mosul Eye, a source that I'm told has some track record of reliability, shows a video of disabled children (just hanging out, really), then claims the following:

Through monitoring and following the death incidents of children with Down's Syndrome and congenital deformities, we were able to learn that the Shar'i Board of ISIL issued an "Oral Fatwa" to its members authorizing them to "kill newborn babies with Down's Syndrome and congenital deformities and disabled children". The Fatwa was issued by one of ISIL's Shar'i judges, a Saudi judge named " Abu Said Aljazrawi".
The information indicate that most of the children born with Down's Syndrome are those of foreign fighters who married Iraqi, Syrian and Asian women. We recorded more than 38 confirmed cases of killing babies with congenital deformities and Down's Syndrome, aged between one week to three months. They were killed by either lethel injection or suffocation. Some of those killings took place in Syria and Mosul.
This displaced child from Mosul, ISIL issues a Fatwa to kill him.
As if it is not enough for ISIL to kill men, women and the elderly, and now, they kill children

Coverage in the West has linked this to Aktion T4 (Breitbart, here, is typical), the systematic Nazi murder of disabled people at the beginning of the Holocaust. Sarah Palin has weighed in, too, with her usual pure-ID politics: "Over my dead body," she says. Lots of coverage followed.

I think it's a mistake to compare ISIL to the Nazis. The murder of 38 disabled children is terrible. The murder of 200 Syrian children, as alleged in this video, is also monstrous (this story also compares ISIL to the Nazis). In the West, though, we like to compare everyone we hate to Nazis, but 20th-century western fascism is just one kind of evil, among many, and when we misunderstand our enemy it makes it harder to defeat them.

From the disability perspective, moreover, my community tends to parse everything through the western tradition of eugenics. Eugenics is both a historical and contemporary problem that emerged directly out of the western scientific tradition. I see it as a byproduct of the Enlightenment, although that's a post for another day (or, rather, just a long list of citations of pieces by smarter folks than I). It is possible that ISIL, with its European connections, is drawing from that eugenic tradition. But I don't think so.

This is not, unlike the video of the Syrian massacre, or the specific slaughter of wheelchair users in the Bataclan theater in paris, an explicit act of terror. There's no video of murdering disabled infants. This is not about exterminating the outsider or spreading fear + hate in the world. Rather, it's enabling ISIL fighters to murder their own disabled children, eliminating the perceived "unfit" from society.

That, sadly, is an ancient tradition. The infanticide of disabled children is fairly routine throughout history and continues around the world today. I just read that 98% of all abandoned children in China have disabilities, for example, but I'm not picking on China. Ableisms, often murderous ones, infuse all cultures in their own way.

None of this excuses ISIL's fighters who are murdering their children. I'm not even sure if the distinctions matter. But traditions of infanticide do vary, and I'm already seeing pro-forced birth Americans using this fact to support anti-abortion laws in the US while also promoting ground war in Syria.

Universal Design for T-Shirts

My son, like many children with disabilities, has some acute sensory issues. T-shirt tags bother him incessantly, and the advent of the printed label is wonderful. We try not to buy shirts that have tags, and when we do ...

Universal design for T-shirts is: no tags! #Sensory pic.twitter.com/iLnupk1fZ8

— David M. Perry (@Lollardfish) December 18, 2015 

(Image Description: three tags cut off a shirt)

This is trivial, but it's also annoying and not needed. No one likes tags! No one things a shirt is better because it has multiple tags. Printing labels on the fabric works.

Universal design always makes things better both for the people with specific needs (i.e. my son, for whom shirts with tags are terrible) and, in less acute ways, for everyone else.

Universal design, hooray!

Pajama day. Hooray! pic.twitter.com/JieTVII2ch

— David M. Perry (@Lollardfish) December 18, 2015

(Image: Two kids, hands up, wearing Minion Christmas Pjs).

Actually, I hate pajama day. But that's another story.

Inclusion Pays Off in Vermont / MN Series On Disability and Work

The Star Tribune has a great  five-part series about disability and work, focused on Minnesota, but looking more broadly - Failing the Disabled.

Here's one I like, because it's a positive outcome.

With her zest and ambition, Wollum personifies the remarkable strategy that has made Vermont a leader in the civil rights movement for adults with disabilities. If she lived in Minnesota, Wollum might have been steered into a sheltered workshop or mobile cleaning crew, where thousands of disabled adults perform mundane tasks and have little or no contact with the broader community.
But here, in this state of hardscrabble hillside farms and country roads lined with sugar maples, sheltered workshops are a thing of the past. Disabled adults are expected to take their place each day alongside other working people. In the 16 years since the U.S. Supreme Court ordered states to end the segregation of people with disabilities, few states have carried the flag as boldly as Vermont.

This is achievable everywhere.

Instead, even in Minnesota, a state that prides itself on its commitment to disability justice, we get this:

Though both have Down syndrome, Erin, 26, and Suzanne, 23, have been on starkly different career paths.

Erin makes as little as $2.75 an hour at MRCI, a sheltered workshop operator.
Suzanne makes $10.10 as a breakfast hostess at the Hampton Inn.

While Erin and her cleaning crew are largely hidden from public view, Suzanne’s is the first face that many visitors see each morning in this southern Minnesota town.
Just how Erin and Suzanne wound up on such different trajectories is a case study in the fickle nature of job opportunities for Minnesotans with disabilities.

Jobs have been the big quest for decades now. I'm glad Vermont is showing what's possible.

Inclusion Denied in West Virginia

(Reposted from 9/16/15 on a defunct part of the site)

In West Virginia, a young man with Down syndrome is being told he can't attend the inclusive school near his house. 

It all started when Roy's parents noticed he was becoming more disinterested in school while attending Magnolia High School during his freshman year.

In Wetzel County students with "severe" special needs are to be placed at Magnolia, regardless of where they live. The Stevens family lives within the territory of Hundred High School, but the school system believes Magnolia is better equipped to deal with students with special needs.

Magnolia is about an hour drive away from the Stevens' home.

Last year Roy's family was granted a temporary reprieve, which allowed him to attend Hundred. At the time, Roy was having trouble getting up early enough to catch the bus to Magnolia. His family said he ended up missing school on quite a few occasions, despite his flexible attendance schedule. Karen would take Roy to school later in the day on some of these occasions, which was two hours round-trip.

While attending Hundred High School, Roy flourished. He attended more than half of regular education classes, performed hands-on work, and joined clubs and activities, including the school band.

"He made so many friends, and now, when he sees people in town, his friends know him, they're not afraid of him, they tell their parents about him, and their parents know him," Karen said. "And as Roy transitions into adulthood, that's the greatest thing for him where he lives."

Every time you read a story about a child being denied a FAPE in LRE (Free and Appropriate Public Education in the Least Restrictive Environment), remember there are lots more people like Roy being denied as well. 

West Virginia - Wetzel County anyway - is structurally designed to make a less independent, less included, adult population. 

We've got to fight that. 

Rape Culture and Down Syndrome

Content Note: This post does not describe rape, but does describe the way our justice system embodies rape culture. 

In March, 2013 - I wrote about a rape case involving a woman with Down syndrome. Her rapist was convicted, but the judge threw out the case because "she didn't act enough like a victim." The Down syndrome community reacted as if this was an attack on disability rights, which it was, but it's also a standard manifestation of rape culture in our society.

Her rapist was re-convicted yesterday. This time the conviction was upheld.

Here's my piece. I'm going to quote it at length. But you can just click over.

The Georgia appeals court judge, Christopher McFadden, argued that the verdict went "strongly against the weight of the evidence" because, in his judgment, the woman in question -- I'll join other writers in calling her Jane -- didn't act like a victim and the man didn't act like a rapist.
Jane has Down syndrome and the growing national outrage to this case has focused, with reason, on her disability. But Down syndrome is only part of the story.
The outrage is not only because this judge didn't understand Down syndrome, but that judges frequently impose their perceptions on cases of sexual assault, reducing sentences even for convicted rapists on the grounds that the victim didn't act "correctly." Jane's troubling case reveals the intersections between rape culture and the way we strip agency from people with disabilities.

So in the first place the judge didn't think Jane acted correctly. He doesn't know anything about Down syndrome. But the problem is so much bigger.

Down syndrome may be a reason this judge decided that Jane's words carried less weight when measured against his perception, but many nondisabled women, women of all social classes, races, sexual orientations, and levels of ability, have experienced precisely the same kind of dismissal.

Here are a few examples that do not involve disability.

Last year in Montana, a judge reduced a former teacher's rape conviction to 31 days because the victim, a 14-year-old girl, was "as much in control of the situation" as her rapist and, in his opinion, "older than her chronological age."

In California, a judge reduced a sentence of a convicted rapist because the woman didn't fight hard enough. The judge said, "If someone doesn't want to have sexual intercourse, the body shuts down. The body will not permit that to happen unless a lot of damage is inflicted, and we heard nothing about that in this case. That tells me that the victim in this case, although she wasn't necessarily willing, she didn't put up a fight."

In Arizona, a judge reduced a sentence of a police officer convicted of sexual abuse to community service and probation, instead blaming the victim for being in a bar. The judge said, "If you wouldn't have been there that night, none of this would have happened to you. ... When you blame others, you give up your power to change."

In Alabama, a judge structured a 40-year sentence for rape so the rapist would serve two years in a community program for nonviolent criminals and three years of probation at home. The judge, much like McFadden, argued that the victim just didn't behave correctly. He said, "You didn't hear the evidence. The original allegation was that both of these crimes were forcible. But then you have to believe that although she was forcibly raped twice, she continued to come back and have a social relationship (with the rapist)."

Other women have been prosecuted for false reporting of rape because they didn't "act traumatized." Rape convictions have been vacated entirely because the victim didn't fight back, such as in Connecticut, when the state supreme court freed a rapist because his victim, a woman with cerebral palsy and a mental age of 3, with no ability to speak, didn't bite, kick, or scratch her attacker.

As disability blogger Sarah Levis has commented, all of these stories should push our attention to this aspect of rape culture in the courtroom. Rape culture creates the myth that victims of rape must react within a predictable set of norms or raise doubts about the legitimacy of the rape. All of these women, including Jane, behaved in a way that judges didn't understand, so they overturned convictions or reduced sentences.

And here is where disability comes back into play. Because of her Down syndrome, Jane is relatively immune to the kinds of victim-blaming endured by other women who are assaulted or abused...All of the myths about false reporting of rape don't apply to Jane because of her disability, and for that at least we can be thankful. Jane's experience points to the offensive way women's behaviors are interrogated when they seek justice.

Finally, I said:

Do not focus on Jane because she is a woman with Down syndrome. Focus on Jane because she is a woman who says that she was raped. Focus on Jane because she's joined the ranks of other women, women of all races, classes, sexual orientations, and levels of ability who have said that they were raped and then had their testimony disregarded by a judge on the basis of not acting enough like a victim.

There is no one correct way to respond to being violated, but there are so many ways that our justice system can make it worse.

I'm glad Dumas is convicted. But there's so much more work to do on our justice system and to fight rape culture.

Disability Abortion Narratives - The Stakes and Some Questions

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?

The Shooting of Jeremy Hutton and Law Enforcement Narratives

In 2010, Jeremy Hutton, a 17 year-old-boy with Down syndrome, was shot by a police officer who claimed Hutton was driving right at him. That claim held up in the post-incident review.

Here's a video showing that's untrue (original source), the officer was safely to the side.

A video of police shooting a car driven by a boy with Down Syndrome. The video contradicts police narratives that the boy was deliberately driving straight at the deputy.
Posted by David M. Perry on Wednesday, April 29, 2015

We cannot trust police narratives, even if 99% of them are true, because the other 1% involves life and death. Moreover, all video must be made accessible to all parties in a case.

More to come on this case.