Wednesday, September 30, 2015

A Day in the Life at Chicago Public Schools - Special Ed

A local story went national yesterday. A mother arrived at school to find her child separated from the other kids and wearing a garbage bag. According to the mother one official defended the practice by saying since there was no rule explicitly against it, it wasn't actionable.

Meanwhile, Chicago Public Schools is cutting vast sums of money from special ed in an unprecedented way (after the school year has already started).

Mark Brown, at Chicago Sun-Times, went to CPS' press conference and wrote that this is a calculated move to push kids out of special ed. Special ed is expensive.

In a Facebook post, quoted with permission, activist and former mayoral candidate Jesus Chuy Campuzano agreed. He posted this picture of a slide which demonstrates how CPS is planning to tear apart their special ed program.

Image Description: Who are our Diverse Learners in CPS?
The majority of students with disabilities in CPS qualify for services
because of a specific learning disability (50.4%). For the most part, these students have
average or above average intellectual ability (IQ) and should
be learning with their peers.

I also have a number of other stories from parents I hope to be sharing in a forthcoming piece. It's not good.

Tuesday, September 29, 2015

Two MacArthur Winners - A Medievalist and a Designer for People with Disabilities

I am a cynic about most high-prestige awards, institutions, and other fancy things. Somehow, though, the MacArthur fellowships (aka the "genius" grants) manage to please me every year. Whatever their process, which is mostly opaque, they find both high profile and low profile scholars and creators who just do outstanding work.

We've had a good run of medievalists in the last decade or so, an elite cadre now including Marina Rustow.
Marina Rustow is a historian using the Cairo Geniza texts to shed new light on Jewish life and on the broader society of the medieval Middle East. The Cairo Geniza (or Genizah) comprises hundreds of thousands of legal documents, letters, and literary materials—many of them fragmentary—deposited in Cairo’s Ben Ezra Synagogue over more than a millennium. Rustow’s approach to this archive goes beyond decoding documents, in itself a formidable task, to questioning the relationship between subjects and medieval states and asking what that relationship tells us about power and the negotiation of religious boundaries.
Given my own background in Mediterranean studies, I know Rustow's work and I know her archive, though I lack the language skills to work with it directly.  This is her lab, dedicated to making the archive accessible.

The other winner (other than Coates, whose work is extremely important, but also already well known), is Alex Truesdell. I didn't know Truesdell's work, but it sounds fascinating.
Alex Truesdell is a visionary social entrepreneur who creates low-tech, affordable tools and furniture that enable children with disabilities to participate actively in their homes, schools, and communities. Truesdell challenges our assumption that disabilities are fixed and instead suggests that limitations can be minimized, or even eliminated, with effective user-inspired adaptations—the kind she creates as founder and director of the nonprofit Adaptive Design Association (ADA).

Most devices that help children with special needs are expensive and mass-produced and must be replaced as a child ages. Each item built by ADA, in contrast, is the result of extensive collaboration with a child and family in order to optimize how the user will function at home or school. Truesdell’s innovative construction processes use common and affordable materials, such as corrugated cardboard and glue, to allow designers to prototype, build, and fit equipment on-site quickly and inexpensively. The result is unique, imaginative, and thoroughly useful products. Examples include steps (customized with superhero designs) that allow a young boy to climb in and out of his wheelchair without assistance, a seat insert that makes a standard classroom desk accessible for a little person, and a rocking chair that a non-walking child can propel and that can be combined with a detachable tray for eating or play.
Amazing, right? This is what these grants are for, in my opinion - taking a visionary, giving them a lot of money and more visibility, and saying .... go create!

Monday, September 28, 2015

NIMBY: Bigotry Against the Disabled is Bigotry

A proposal to build a home (note: I do not know the people building or running this home, so I cannot vouch for it. I am generally opposed to this kind of large-scale establishment, but some are alright for some people) for adults with developmental disabilities in Atlantic met with opposition. Not in backyard, they said. Then, the opposers were treated as if they were bigots, and their feelings got hurt.
Baker was fuming Thursday night after the Hall County commission meeting at which the board approved a planned community for adults with developmental disabilities. It wasn’t the facility getting OK’d that made her so mad. It was the way it was approved, she said, with the board seemingly in agreement before the vote and residents who were in opposition castigated as bigots.
Note: Bigotry against the disabled is bigotry.

There's an interesting local internet wrinkle though.
This rezoning vote was a typical exercise in local politics: someone proposes to build something. People see a change is coming. Conjecture builds. Worry ensues. Folks pack a room.
But what happened here demonstrates a new wrinkle in this age-old process. Here, the Internet aided public engagement, which is good, but enabled people to create a narrative, often ugly and untrue, that built upon itself. The petition against the plan drew comments with the usual zoning buzzwords like “traffic” and “density.” But then, terms like “mentally challenged” and “Section 8 deadbeats” and “near a school” came in and the controversy took on a life of its own.
We - meaning the media and those who consume it - spend a lot of time thinking about the internet conversations, whether productive or destructive, on a global scale. I'm very interested in the localized internet and the way it can foster connectivity or magnify dissension.

Which is to say my local suburb internet can be pretty nasty sometimes.

Sunday, September 27, 2015

Sunday Roundup - Back on Blogger

Well, my move to Wix was a disaster. I did, however, defeat sunk cost bias and moved back here. I'll be writing more about the lessons of the disaster in the next week or so.

Here's what I wrote this week, even as I continue to work on my book and other long-term projects.
Should be a published piece or two next week. Thanks for reading!

Saturday, September 26, 2015

Inspiration Porn at a Chicagoland McDonald's - I'm Hating It.

An act of kindness at a Chicago-area McDonalds has been getting a lot of attention over the last week. A customer, Destiny Carreno, saw an employee decide to close his till and go help a disabled man eat lunch. Carreno  took a picture, placed it on Facebook, and went viral.

Her Facebook post has nearly 400K shares. Buzzfeed’s  coverage has near 300K. Carreno, who I’m sure is a nice lady, wrote, “Seeing this today brought tears to my eyes! Compassion has NOT gone out of style.”

This is inspiration porn. The disabled man, here, is a prop to reveal the inspirational kindness of the McD's employee. Notice how he vanishes from the story. Notice how his predicament is used, WITHOUT PERMISSION, by Carreno to show off how great the employee is. Inspiration porn strips agency away from people with disabilities, rendering them a tragic situation in which the abled can show off how awesome they are.

Moreover, this story took place in Illinois, where we are experiencing a sustained attack from Bruce Rauner and his allies on community services for people with disabilities. If this man needs assistance to eat lunch, a pretty basic need, where are his supports? 

It's not the employee was to blame. He did the right thing. It's not that Carreno was wrong, although please do not take pictures of disabled people and broadcast them on the internet without permission. It's that such media coverage tells us the wrong lessons.

A just society doesn't revel in an act of kindness from an underpaid employee of a mega corporation, but develops structures to make that act of kindness unnecessary. Inspiration porn works directly against that fight for a more accessible society, simultaneously convincing us that disability is necessarily tragic and that a little compassion is all we need to make everything better.

Friday, September 25, 2015

Miracles and Things That Aren't

Many children with Down syndrome are born with holes in their hearts. In many of those cases, the holes close by themselves as the children grow older.

Unless you meet the Pope, in which case USA Today has decided to clickbait it as a miracle.
The Pope asked my husband, 'How old is she? What's her name?' He told (the Pope) she has two holes in her heart. When we got home in May, we went back to the cardiologist for a check-up. One of the holes was completely closed and one was half the size."
I'm happy for this baby, and if the feelgood media wants to report on it as "the family believes it's a miracle," that's fine. But adequate reporting would include some basic medical facts. Rather than being inspirational, this story suggests Down syndrome and its complications require divine intervention, whereas we humans (perhaps using our God-given intelligence and, you know, science), are doing some pretty awesome things right here on earth.

If you want a miracle, on the other hand, here's one. John Boehner's resignation was reportedly inspired by the Pope.

Thursday, September 24, 2015

Call for Stories: Neighbors Trying to Control Your Disabled Child

Yesterday I published a brief post on Flowers v. Gopal, in which some rich California folks are trying to declare a neighboring autistic child a public nuisance. I'll have more to say about the case, including answering the, "but but he wasn't a nice kid!" comments I'm getting (short version: If he didn't have autism and they wanted to sue, they'd use personal injury law or something, not public nuisance. Public nuisance law presupposed it's uncontrollable. Anyway).

I'd like to collect other stories about the ways that neighbors have tried to control your disabled child through the legal system - either lawsuits, calling the police, or calling child protective services or departments of children and family services (or whatever your state has), or trying to get the school to expel your child because of their behavior to other children, etc. 

You can post them in comments (now with Disqus, which hopefully will work better). You can post them on my Facebook threads. You can send them to me over email. If you send them to me over email, I can keep them confidential.

Please share widely.

Happy Eid from a Rude Professor at Rutgers

The above tweet details a snotty response to a student asking for an excused absence for Eid Al Adha. It's rude. It's arrogant. It's demeaning. It implies that the student is a liar and a slacker and insists the student brings in a note from their religious leader.

It also violates Rutgers' religious holiday policy:
It is University policy (University Regulation on Attendance, Book 2, 2.47B, formerly 60.14f) to excuse without penalty students who are absent from class because of religious observance, and to allow the make-up of work missed because of such absence. Examinations and special required out-of-class activities shall ordinarily not be scheduled on those days when religiously observant students refrain from participating in secular activities. Absences for reasons of religious obligation shall not be counted for purposes of reporting.
Students are advised to provide timely notification to instructors about necessary absences for religious observances and are responsible for making up the work or exams according to an agreed-upon schedule.
I hope the student formally reports this professor.

Wednesday, September 23, 2015

Flowers v Gopal - Rich folks try to declare autistic boy a "Public Nuisance."

UPDATE 10/11/15: One member of the plaintiffs called me to offer their side of the story, which is that it's entirely about public safety and not about autism at all; furthermore, they claim, they only sued because the defendants served them with a cease and desist letter, leaving the plaintiffs with no choice to sue. I have a lot of documents and will be reading them, but obviously I am aware that the plaintiffs are trying to win in the press, and weigh their account appropriately.

In Sunnyvale, CA, a bunch of rich folks are trying to use a lawsuit to declare a child with autism a "public nuisance." Here's a version of the complaint with, at the defendants' request, the child's name blacked out.

The neighborhood is rich.That matters in this story. A poorer context would result in informal working it out, child services intervening, or incarceration.

Initial News coverage:
I dislike how these stories lead with casting the boy as a menace. I'll have much more to say about this in a forthcoming piece. It's part of a larger pattern of both news representation and the way that private citizens, not just the state, try to declare the disabled as unfit for public spaces.

The latest is that the judge sent the parties to mediation. Here's a statement from the defendants:
Sunnyvale Autism Parents Speak Out
By Parul Agrawal and Vidyut Gopal
Yesterday, the Honorable Judge Maureen Folan decided that the lawsuit against our family should go to a judicial settlement conference where both parties should mediate and put an end to this very unfortunate litigation. This case has caused grief not just to our loving and close-knit family, but also to the community around us. We have tried repeatedly to settle this case and sincerely hope that this judicial settlement conference will put an end to the agony.
In an attempt to protect our privacy, especially for our disabled son, we have been shy about talking to the press or appearing on camera. But, in spite of our desire for privacy, after all the public opinions about this lawsuit we felt that the community needs to understand our story too. We are very disappointed by the deeply manipulative falsehoods that have been spread about our family. We love our son deeply and have always provided the supervision and support he needs at home and in the community at large.
Our son is an affectionate, fun loving and outgoing boy who has autism. With support (and we do not deny that like all children with autism he needs support), he enjoys community activities, including hikes, swimming, and bicycling. He is learning to play tennis and has Bollywood danced on stage several times in front of large audiences.
When there is a genuine safety concern in a neighborhood, our society provides many remedies, including police enforcement and child protective services. In our case, neither of these public authorities found any public safety issue with our son warranting intervention. Please also note that to this date, not a single medical bill or evidence of property damage has been presented to our lawyers. More than a year ago, we felt compelled to move from Arlington Court, in order to provide a safe and nurturing environment for our son, and it has been a positive experience for our family.
We hope it's obvious that no autism parents want their children's outbursts to result in any harm to anyone else. Yes, our kids need more help than other kids. We do not deny that for a moment. Yes, we can—and do—go to the ends of the Earth to help them. But as the Judge said, when conflict arises, we must use our brains for creative community solutions and not aggressive, expensive lawsuits. We do not want a single other autism family to suffer what we have. Every day, every hour and every minute that we have had to live through this nightmare has been agonizing for us. But we are grateful for the amazing support of the community and the disability organizations around us. We just hope this lawsuit will result in stronger, more welcoming, and more resilient, less litigious neighborhoods everywhere.

The "Authenticity" Dodge

I met Arthur Chu this summer at a workshop on the problem of misogyny on the internet and we've been corresponding via email and social media a lot since then. Our writing interests overlap when it comes to representation issues in media and games. He interviewed me on the problem of claiming "authenticity" as a way to avoid diversity.

Here's an excerpt:
DP: When you start to create fantasy races and then you make the argument “Oh no people of color, we have to be realistic,” you’ve revealed your cards. You’ve shown that you just don’t want to have a diverse world, that you want to promote this myth of homogeneity, that you want to use historical reality to justify making a choice that makes other people upset.
AC: That’s interesting, because it seems we’re in an upsurge of interest in sword-and-sorcery fantasy–
DP: We sure are, it’s great!

AC: And it seems recently we have this appetite for “old-fashioned” narratives that center the West and reduce the rest of the world to antagonists or scary foreigners, even if it’s in a winking, ironic way. You’ve got the Lord of the Rings films that started the revival of high fantasy in film hewing close to Tolkien’s depictions of the Southrons and the Easterlings as sort of flat enemy races, and then you’ve got Game of Thrones using the Dothraki to bring back the trope of the barbaric Mongols. What do you think is driving this trend of the past ten years or so?
DP: Oh, to me it’s a much longer trend than that. Orientalism is built into 800 years of Western narrative production about the East. That the East is simultaneously more advanced and more decadent and more barbaric and more civilized all at the same time. And I think that the Orientalism of Game of Thrones is the perfect embodiment.

Jesse Leaves Wisconsin

(Reposted from 9/9/15) 

Jesse Stommel is leaving a tenure-track job at Wisconsin to go take a job as a faculty development director at the University of Mary Washingon. He wrote a powerful blog post about the descision, which you should read.

I want to highlight just one point, out of the many, skipping the issue of the Wisconsin GOP attack on higher education (which is the main story): Jesse writes [his emphasis].

My work — the work I was hired to do — has not been supported. While I was initially assured that digital work for broad public audiences would count, I was later told I should wait to do that work until after tenure and focus on traditionally peer-reviewed publications for academic audiences. In January, the following bolded words were sent to me in a letter for my official file: “The Committee wants to send a clear message that what matters is tenure, what matters for tenure is peer review, and work posted on the web is not considered peer‐reviewed.” 

Jesse is an emerging leader in digital humanities,  pedagogy, alternate forms of publication, and more. This kind of work is what makes him a nationally-known voice in higher education. It increases, well, increased, UW Madison's reputation. It matters.

That his department/committee couldn't figure out a way to count that work is an indictment of their inflexibility. 

Tenure and Activism

Here's a great piece from Conditionally Accepted about the way being on the tenure-track makes us conservative. It's wide-ranging and important, thinking about identity and many related issues. Read it all. Here's the bit that especially dovetails with my interests on public writing, activism, and the academy [my emphasis]:

More generally, I bear the burden of fear and doubt because the institution itself does not explicitly reward activism, advocacy, and community engagement.  I appreciate informally being told teaching a community-based learning class looks good, or that open access research is the way of the future for scholars.  And, at a minimum, there is little sense that such efforts would hurt one professionally (though I remain skeptical when such claims are made regarding activism).  But, formally, these initiatives are not valued; they are not explicitly mentioned in the tenure expectations outlined in our faculty handbook, nor is there a longstanding tradition of favorably evaluating community engagement and advocacy.  As I told my colleague, it’s great that the Center offers so much to faculty who engage the community in their work — even offering a small stipend to those who go through training on community-based teaching; but, short of the institutions explicit valuing of such efforts (i.e., counting it toward tenure), only a few brave souls will venture into them.

As I've said many times -  If we believe that something is important, we have to make it count for tenure, promotion, and hiring. 

Donald Trump and Autism

(Reposted from 9/18/15) 

Last night Donald Trump said that vaccines cause autism. It's important to remind you of a few things.

1) They don't.
2) The notion that autism is worse than a deadly disease reveals deeply ableistic ideology.
3) See point #1.

Here's a link to the Autistic Self Advocacy Network's statement:

While no link exists between autism and vaccines, of greater concern is the willingness of those who promote this theory to suggest that exposing children to deadly diseases would be a better outcome than an autistic child. Vaccinations do not cause autism – but the use of autism as a means of scaring parents from safeguarding their children from life-threatening illness demonstrates the depths of prejudice and fear that still surrounds our disability. Autism is not caused by vaccines – and Autistic Americans deserve better than a political rhetoric that suggests that we would be better off dead than disabled.

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. 

Me and Pope Francis

(Reposted from 9/14/2015 on a defunct piece of the site)

Pope Francis is coming to America. Here's a media guide to his visit from John Allen at Crux (From the Boston Globe).

I owe my media career to the popes. I had just turned in my tenure file and my book 
manuscript when Benedict retired. That morning, I was talking about how all the news reports talking about a 15th century pope who retired were missing the more important 13th century precedent - Pope St. Celestine V. Benedict had visited Celestine's shrine twice, and the medieval pontiff, who retired due to old age and a desire to return to a contemplative life, clearly offered a better example. Also the canon law that followed Celestine was critical.

So I wrote about it for CNN. Then I wrote a followup piece for The Atlantic about medieval and modern elections, and what we might learn from medieval elections. After Francis was elected, I had the front page on The Atlantic's website with "The Importance of Being Francis."

I wrote more about the Popes and history too, as time went on, the most recent being on the double canonizations of two popes on "why secular people could care about saints."

I write about other things now. In the initial wake of his election, a lot of US media seemed to not get Francis, trying to shove him into classic American liberal/conservative dialectics where he simply refuses to fit. So I wrote. Now, they either are better at covering him or they've hired Catholic journalists to do it, and I haven't felt the need to pitch a piece on him in a long time.

But I'm watching, because whatever you think of him, Pope Francis continues to be an interesting story.

Thursday, September 3, 2015

Brief Hiatus is moving to a new site. There will be no new content here until it's ready. Expect the blog to be back up and running soon.

Autism Speaks and the No True Scotsman Fallacy

I wrote about Autism Speaks a few weeks ago, and my email box has been lively with parents telling me to "check my facts" or sorrowfully wanting correct my ""unsound and terribly flawed" information.

One of the issues with Autism Speaks is that they define Autism as tragedy. Then, when confronted by autistics who are clearly not tragic, they respond, "Well your autism is not like our autism," or "you are not like our children."

Here's an insight, I think. The definition of autism employed by Autism Speaks and its defenders depends on the "No True Scotsman Fallacy." From Wikipedia -
No true Scotsman is an informal fallacy, an ad hoc attempt to retain an unreasoned assertion.[1] When faced with a counterexample to a universal claim ("no Scotsman would do such a thing"), rather than denying the counterexample or rejecting the original claim, this fallacy modifies the subject of the assertion to exclude the specific case or others like it by rhetoric, without reference to any specific objective rule ("no true Scotsman would do such a thing").[2]
Person A: "No Scotsman puts sugar on his porridge."
Person B: "But my uncle Angus likes sugar with his porridge."
Person A: "Ah yes, but no true Scotsman puts sugar on his porridge."
That's how Autism Speaks deals with autistic people.
AS says: - People with autism can't ...
Autistic person says: I can!
AS says: No true person with autism can ...
It allows them to dismiss autistic critics as not relevant or not the people they are working to "save."

There are, of course, parents who are struggling, but lots of parent groups recognize that the diversity of the autistic spectrum is a strength, a way to build a movement, rather than a threat to fundraising based on sorrow.

Wednesday, September 2, 2015

Switched at Birth - Interview With Show Creator Lizzy Weiss.

Yesterday, I wrote my first piece for The Mary Sue, an awesomely nerdy and feminist website. It's on the show Switched at Birth, a "Peabody-award-winning family drama on ABC Family." I've been interested in the show for awhile, as it addresses disability issues in a more centered and interesting way than anything else of which I'm aware on television. They've focused on Deaf issues (one of the two lead characters is Deaf and is played by an actress who is hard-of-hearing). It still feels revolutionary to me to watch all the scenes in ASL.

Now they are doing a plot arc in which two characters receive a prenatal diagnosis for Down syndrome for their fetus. Here's what I wrote:
The show creators knew that Down syndrome, prenatal testing, and abortion were major issues within the disability community and American society overall. What they couldn’t have predicted is that, thanks to a proposed ban on abortion because of a prenatal diagnosis of Down syndrome in Ohio, their new plotline would tie into front page news.
I don’t know what choice Lily will make, but the most recent episode used the pregnancy to dive into questions about life with disability, cross-disability identity (Daphne thinking about connections between her identity as a Deaf woman and Down syndrome), abortion, and the complications of any unplanned pregnancy. Daphne nearly broke up with her boyfriend when he made ableist remarks (he’s trying to make amends). Lily, the expectant mother, spoke about her deep connection to her brother (who has an unspecified genetic condition) and the ways that life with a disability can be different than expected, but still rich and full of joy.
Once I heard about the plot, I wanted to know how the show creators prepared to execute it and whether any people with Down syndrome would be directly involved. I feared that, as too often happens on mainstream TV, the show would be about a disability without someone with that disability. I should have known better.
I corresponded about the plotline with show creator and executive producer Lizzy Weiss. Here’s our conversation:
Click through, please, and read and share the interview.

I've seen next Monday's episode. It made me weep (because any diagnosis story throws me emotionally right back into that hour after my son was born). It's solid. I do, of course, have comments and critiques, because I'm a critic, but you'll have to wait until next Monday!

Tuesday, September 1, 2015

One Future of the Catholic Church

The Pope suggests abortion can be forgiven. Earlier this year, he talked about big changes to its position on the family. Does he mean birth control?

People forget that before Humanae Vitae, the papal encyclical against birth control, there was widespread hope and reasonable arguments among more liberal theologians that birth control would be approved. The news that Pope Paul VI took such a hard line was devastating (I've interviewed theologians, now of advanced years, about the experience when the news came out).

He's also talked about his sympathy for married priests, and given that married priests were pretty normal for around 1000 years of Catholic history, that's not so far-fetched.

Fascinating and important, even if (like me), you aren't a Catholic. Because over a billion people are. None of this matches my views. There's nothing to forgive for abortion, for example. But this isn't about my views.