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Day of Mourning - 3/1/2015

Saturday, February 28, 2015 0 comments
Every year on March 1st, the disability community gathers to mourn people killed by their parents and caregivers. We mourn all untimely deaths, of course, and there are far too many deaths by accident, stranger violence, police violence, and more.

But there is something specific to the disability community in which caregivers kill and then are forgiven in the media. The media rhetoric explains away the violence by making disability itself the culprit.

We reject that narrative.

Here is a statement by Autistic Self-Advocacy Network president Ari Ne'eman
Memory is an important part of how we define our communities. When we think about the history of the disability rights movement, there are so many moments at which we stop and think to ourselves, “But for the actions of those who came before me, I might not be here with the chances and opportunities I have today.” From the heroes of the 504 Sit-In to the modern day struggles to free our people from institutions and nursing homes, we stand on the shoulders of those who came before us. We are bound together by the memory of those who fought on our behalf.
But the memories that tie us together as a community aren’t just the happy moments, the victories where our cause takes a great step forward. We bond over our sorrows as well. Today, we are gathered together to remember members of our community who had their very lives taken from them, for no other reason than because they were one of us. Because they were disabled.
For George Hodgins, for Melissa Stoddard, for Daniel Corby, for Nancy Fitzmaurice, for London McCabe, for Katie McCarron and Tracy Latimer and Alex Spourdalakis and countless, countless others, there will be no opportunity to share in our community’s moments of celebration. There will be no chance to experience the sweet sense of belonging that we’ve each come to together after long years of fear in our time apart. There will be no chance even for the everyday joys of existence itself.
Here is a list of vigil sites for 2015. I do not know whether I will be able to attend the Chicago event, but I hope to do so.

I wrote an article on the death of London McCabe, quoting Ari, on this issue. My motto is that we should write victim-centered narratives, not killer-centered narratives. This was, I think, the hardest piece I've ever written in terms of its emotional effect on me. And I received criticism on it for not talking about the killer's mental health issues in an appropriately sympathetic way. It's not my goal to demonize the killer, it is my goal to remember London. This is the paragraph that gutted me.
London McCabe did not want to die. London liked big hats. He liked fuzzy stuffed animals. He made a wish on his cupcake for his sixth birthday. In September, his father wrote, "London is pleased as punch. He lays on our laps and puts our hands together. Last night he made the 'mmmwha!' sound and gave his Mommy a kiss. Then he made the same sound and pushed our faces together. He's all smiles."
Wherever your body is tomorrow, spend a few minutes remembering those we've lost. Vow to remember them. Try to tell their stories.

I will continue to use my blog and, to the extent I can land pieces, my contacts in journalism, to tell victim-centered stories and to call out those reporters who do otherwise. That's my promise.


Ta-Nehisi Coates at Dominican University: Activism and Change

Friday, February 27, 2015 0 comments
Last night I had the pleasure of watching one our nation's great writers, Ta-Nehisi Coates, give a talk on the case for reparations at my university. The content of the talk was based on his recent major article for The Atlantic, which you should read. His thesis is that for 350 years, in an ongoing fashion, African-Americans can and are being plundered for their labor. Slavery is a major part of that story, the first 250 years, but he talks mostly housing and redlining and its consequences in the mid-20th century.

In the Q&A, he said something very interesting. A professor asked him what he would tell these "young people" in the crowd tonight, and he very important. He told them that none of them were all that likely to see real change, or at least they couldn't predicate their activism on that change.

He said that every time the African-American community had seen change, it had been because of a context that made the change useful to majority white society. Frederick Douglas was a great activist against slavery, but emancipation happened because it became useful to winning the Civil War. Ida B. Wells was a great activist against lynching, but the federal government did nothing. MLK was a great activist against discrimination, but civil rights legislation took place because the South was embarrassing America in the Cold War.

Now these historical statements are naturally reductive - Coates made them quickly and off-the-cuff - but they do speak to the difficulty of change. For 250 years, he said, slaves rebelled, slaves fled, slaves resisted. They brought no change, but they did say, in Coates' words, "Not in my name."

And then he talked about activism and, for him, writing, of telling true stories and trying to undermine myths of history that serve oppression. Speaking out. Rallying. Even implicitly, rebelling against unjust systems. He didn't promise change as a result of activism, but he promised that saying - not in my name - might help you sleep at night or live with yourself.

And to me, it's the telling of true of stories (which is what I try to do) and activism in all its forms, which has the potential to create the context in which change can take place. It's just not predictable and you cannot base your activism on whether or not you see change. You just have to act, however and in whatever ways you can, locally, globally, in art, in prose, on the streets, in the halls of power, in conversations in your local bar, with your fascist uncle at the holiday table, wherever.

And then you hope that you're lucky enough to be present when the context changes.


2015 Nissan Sentra earns Top Safety Pick from IIHS

Thursday, February 26, 2015 0 comments

The Insurance Institute for Highway Safety (IIHS) today awarded the 2015 Nissan Sentra a “Top Safety Pick” vehicle safety rating. The Institute’s “Top Safety Pick” award recognizes passenger vehicles that excel in protecting passengers in moderate overlap front, side, roof strength and head restraint tests and also achieve a “Good” or “Acceptable” rating in the small overlap frontal test. The 2015 Sentra scored “Good” in all five of the “Top Safety Pick” categories.

“Nissan is committed to safety and innovation, and Nissan is proud to achieve the IIHS Top Safety Pick rating for the 2015 Sentra,” said Fred Diaz, senior vice president, Nissan Sales & Marketing and Operations U.S., Nissan North America. “As a compact sedan, Sentra is a critically important vehicle in Nissan’s lineup and with its standard safety features we're bringing a high level of safety and security to a growing consumer segment.”

Safety and security features standard on all 2015 Sentras include the Nissan Advanced Air Bag System (AABS) with dual-stage supplemental front air bags with seat belt and occupant classification sensors; front seat-mounted side impact supplemental air bags; roof-mounted curtain side impact supplemental air bags for front and rear-seat outboard occupant head protection; three-point front and rear seatbelts, front seat belts with pre-tensioners and load limiters and adjustable upper anchors; and LATCH System (Lower Anchors and Tethers for CHildren).

Every Sentra comes with Anti-lock Braking System (ABS) with Electronic Brake force Distribution (EBD) and Brake Assist; Vehicle Dynamic Control (VDC) with Traction Control System (TCS); Zone Body construction featuring front and rear crumple zones and occupant zones; Energy absorbing steering column; Child safety rear door locks; Nissan Immobilizer system and anti-theft alarm system; Tire Pressure Monitoring System (TPMS) with position monitoring and Bluetooth Hands-free phone System. Sentra SV, SR and SL also come standard with Nissan's innovative and class-exclusive Easy Fill Tire Alert, which sounds the car horn to notify a person filling a tire with air when the recommended tire pressure has been reached.

Christian Holy War - Next on FOX

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All the news lately on Bill O'Reilly has focused on his chronic exaggeration of his records as a reporter on war. The short story is that while has has seen violent things here and there, he's not a war reporter, but it's not likely Fox News or their audience will care.

What I don't want is to let O'Reilly and his producers/writers off the hook for this.




After the Graeme Wood ISIS piece came out, O'Reilly used it to declare that we are in a Holy War. Now I know something about Holy Wars, and it's always possible for one side or another to decree that they are in a sanctified battle. Things get really nasty, though, when both sides adopt such rhetoric, and that's exactly what O'Reilly did here.
Fox News host Bill O'Reilly boosted his idea that the U.S. is in a holy war against the Islamic State (also known as ISIS or ISIL), demanding the Obama administration "take the holy war seriously" and urging American clerics to lead the fight.
After the Islamic State's beheading of 21 Egyptian Christians in Libya, O'Reilly claimed that "the holy war is here" on the February 17 edition of his show. O'Reilly later called on "all Christians, Jews, and secularists who love their country" to call the White House and "say enough."
On the February 18 edition of his show, O'Reilly again claimed it is "appropriate to define the worldwide conflict between Muslim fanatics and nearly everybody else" as a "holy war" and demanded President Obama "take the holy war seriously." O'Reilly asserted that the West must come together to eliminate the Islamic State, adding that "if the politicians won't do it, the clergy must lead the way."
What's ironic is that for days before this the right-wing was insisting that Christianity was fundamentally peaceful, while Islam was fundamentally violent.  And yet here he calls on clergy to lead the way.

This is dangerous talk. It's going to lead to further intensification of anti-Islamic sentiment and activity among radical right-wing Christians, it's going to serve ISIS very well in their recruitment efforts, and it wouldn't surprise me if it creates more domestic violence against Muslims.

I care about this much more than whether O'Reilly invented a fantasy of himself as a war correspondent. The fantasy of salvific violence is much more dangerous.

National Adjunct Walkout Day

Wednesday, February 25, 2015 0 comments
Today is National Adjunct Walkout Day. Around the country, adjuncts have organized walkouts and rallies and donation funds and many other efforts to bring people together and insist on fair wages.

And they are right to do so. As a tenured faculty member, I stand fully in support with this movement, I see their movement as my movement, and will continue do the following - write publicly on the issue, act privately within my university and department, be ready to stand in picket lines and participate in labor actions as they emerge.

I have written some adjunct-related pieces.
Here are a few additional thoughts, though nothing formal, and I welcome debate, dissent, and added thoughts.

The entire university system is now balanced on a tower of debt on the one hand and an exploited workforce on the other. It is unsustainable. I think part of the key moving forward is to link these two problems in the eyes of students and parents (and politicians), rather than the current method of short-changing teachers to keep tuition costs down (not that it's working).

What does the future of higher education look like?

1. The whole university system collapses except for the super elite. We're all adjuncts. It's just about workforce training.

2. Students rebel against the adjunct system, realizing they are going into debt and the money isn't going into instruction. Paradise returns!

3. We continue to stratify in sustainable if unjust ways, dividing the profession between research and teaching profs more explicitly. Both earning stable middle class wages, but tracked and hard for teaching profs to switch from one to the other. Adjuncts return to their original purpose as short-term offerings, ways to bring professionals into the school, and related functions.

I guess I'm working for #3, as I believe it's realistic and possible that we could to turn most adjunct jobs into stable teaching positions with benefits, professional development, and a decent wage. I think we serve the students best when we are teacher-scholars (and I am very critical of profs who, at the elite level, try to avoid the classroom), both contributing to our field and engaging learners in the classroom. So I dislike the split model, but it's better than what we have now.

How do we get there?

One way is for the accrediting bodies to demand that we meet certain thresholds.

A second is for students and parents to demand it. Adjuncts are usually terrific teachers (my basic premise is that everyone is brilliant), but part of what makes a great college prof is the ability to really engage with your students. Adjuncts don't have the time. They often take time though, and then their wages per hour plummet even lower.

A third is for adjuncts, themselves, through labor actions and the support of other faculty, to force change.

Can we combine these three? I'm not sure, but I'm going to continue to write in ways that talk to fellow tenured faculty and to prospective students and parents of students, while supporting labor actions as they come up.

My pledge: I will not cross a picket line of adjuncts.

Another Astounding Adventure of Space Pirate Pilot Ellie!

Tuesday, February 24, 2015 0 comments
Pretty much everyone agrees that fostering creativity is one of the most important things you do for a child. Skills are all well and good, of course, but the ability to imagine and create matter so much to overall development. One way to foster, of course, is by reading to them and then with them, as books do wonders for a child's brain. Imagination play of any kind is fruitful.

When my daughter goes to bed, I usually have her pick between a book or a story, though sometimes she gets both. I tell her silly stories about made-up characters, including a recurring series of adventures of Space Pilot Pirate Ellie! and Space Engineer Nico (First Class). 

Last night, this happened:



Ellie: Will you tell me a Space Pirate Pilot Ellie story?
Me: No, I just read you a whole book!
Ellie: I could tell you one?
Me: Ok!
Ellie: Once upon a time there was a space pirate named Pilot Ellie, and what she really wanted was a cookie. But not just any cookie. She wanted the Cookie of Space! But it was guarded by the Cookie King. And if you ate the Cookie of Space you would become unstoppable and never die. So she blasted off to the Cookie Planet and met the Cookie King, and said, "I want the cookie of space, please!" And the Cookie King said, "No! Not unless we battle." So Space Pirate Pilot Ellie said, "Ok, we can do that." And then they battled. Pew Pew Pew Pew. And then the Cookie King said, "Ok, you win." And then they shared the Cookie of Space. And they became unstoppable. And the next people they battled is what I will tell you in the next story.

Then I kissed her goodnight. Maybe it's time to build another spaceship.

From October 2013. My daughter and I made a spaceship!

She's so serious!

#DontreHamilton - Milwaulkee Doesn't Follow Its Own Police Oversight Law

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Wisconsin has good rules for independent review of police killings, at least partially as told through this story in Politico. The author tells the story of his son's death, the lawsuit, and then the campaign to get an independent review law passed. He concludes:
Finally we began to get some movement, helped by a friendly Republican legislator, Garey Bies, and a Democratic assemblyman named Chris Taylor, in August of 2012. In April of this year we passed a law that made Wisconsin the first state in the nation to mandate at legislative level that police-related deaths be reviewed by an outside agency. Ten days after it went into effect in May, local police shot a man sleeping on a park bench 15 times. It’s one of the first incidents to be investigated under the new law.
So, that's great and other states are looking to Wisconsin as a model for how to respond to officer-involved killings. But such models only work if they are followed. In the killing of Dontre Hamilton, a black man with psychiatric disabilities, they weren't.
A former state legislator who co-sponsored a law requiring independent investigation of those deaths says the Milwaukee Police Department and state Department of Justice didn't comply following the death of Dontre Hamilton.

"Milwaukee just thinks they're different from the rest of the state and they just do things their own way, and until somebody makes them accountable for their actions, they're going to continue," said Garey Bies, a Republican who represented Sister Bay in the Legislature for 13 years. "The citizens of Milwaukee should be insisting that they abide by the law the way the rest of the state has to."
The piece goes on to give background on the law, detail the way it wasn't followed in this case, and quote lawmakers and advocates on their hopes for the future. Here's the point I want to make, though. When we build new systems of police accountability, we also must build in consequences for not following through on those systems. Too often I see stories in which resources and oversight were available, not used, and there are no professional consequences. 




Inspiration Porn Part 2 - Abled woman tells Disability Community that Inspiration Porn is Great!

Monday, February 23, 2015 0 comments
This is one of the worst essays I have ever read on disability. An abled person informing the disability community that inspiration porn is a good thing. She even has the audacity to cite Stella Young. Here's the piece, then a commercial that I think does a better job.
There’s a debate raging on the internet right now about whether or not it’s cool to call disabled people ‘inspirational’ – and going beyond that, whether it’s a) a good thing or b) downright patronising to use them in advertising/promotional campaign - leaving aside the slightly unfortunate casting of Oscar Pistorius as the ‘face’ for a male designer fragrance a couple of years ago. Ooops.

Microsoft, for instance, has been showing off how its technology has helped a six-year-old boy with prosthetic legs. During the American Superbowl footiefest earlier this month, Paralympian Amy Purdy (who has two prosthetic legs) was enlisted to run, dance and even snowboard on behalf of Toyota.

And I say: more power to their elbows. Or possibly bionic knees. I am, I acknowledge, writing this from the standpoint of someone with two legs and two arms whose only (small) disability seems to be that the bit of my brain which can process instruction manuals appears to be entirely absent.
So much wrong. First, her little joke about instruction manuals betrays fundamental ignorance about disability. It's not a joke. We're not all "just a little bit disabled." The notion that we might move in and out of disability throughout our lives is a sophisticated and complex concept, layered with disability hierarchies and the complexities of our medically-guided society.

Furthermore, inspiration porn is not about being patronising, but about using disability to make abled people feel good/inspired.

She goes on:

But considering the prejudices and other challenges that most disabled people have had to encounter in their lifetime – appalling access to many buildings, being referred to in the third person, or, and I have this direct from a disabled friend, ‘being farted at’ right, left and centre (the wheelchair-bound being positioned at the exact height the rest of the population break wind), I don’t see how this can be anything but a positive thing.
The question is asked: should disabled people be positioned as ‘inspirational’? By suggesting that they somehow have additional, superhuman qualities for achieving great things, is this not offensive? Aussie comedian Stella Young has referred to the putting of disabled people on some kind of pedestal as ‘inspiration porn’.
If you don't know Stella Young, sadly recently passed away, go watch her TED talk and read her writings and interviews with her. You'll be glad you did. 

I believe this author that she doesn't "see how this can be anything but a positive thing." One person who might tell her why was, of course, Stella Young. She goes on to talk about her brother-in-law, in a wheelchair, an inspiration to all, with a "harem" (which makes me wonder about her sister).

She talks about the ways in which the disabled were generally invisible in the past, so more visibility is good, and this is true so far as it goes. But visibility does not necessarily lead to change, it leads to people thinking - hey, everything is ok now! I remember when a comedy group did a whole show making fun of disability because "they've got the ADA and we don't." Visibility can lead to complacency.
As for someone who is born with a disability? Whatever happens to each of us is our ‘normal’ – and we don’t know any different. But yes, I do still feel for anyone who is faced with a daily challenge like getting up kerbs in a wheelchair, or shopping in a supermarket (no pushing trolleys for the single disabled shopper), or who has to strap on a prosthetic limb to go to the loo in the middle of the night.  
She "feels" for you, disabled people. That's the end result of all of this - her feelings for you. She feels good about herself because she feels bad for you.

The problem with this article is not, in fact the article itself, but that it reflects the dominant mode of representation and discourse about disability in modern media and everyday life in western culture (and maybe elsewhere, I don't know).


Here's an ad that I like (and it's a real family, though one with a reality-TV background). A multi-ethnic and multi-ability family (remember, disability IS diversity) using "assistive technology," by which I mean an easily extendable mop. It went reasonably viral, with a 2 million + views on YouTube, but I think it deserves more attention. There's nothing inspirational here. There's nothing about making you feel good about yourself because the disabled person has overcome adversity. Rather, there's a tool that's pretty useful set within the context of everyday family life.

 

I actually some of the superbowl ads weren't that bad either, at least compared to some of the things from the past. And some of it is tone - The Microsoft ad had potential, but the voice-over wrecked it. The Toyota ad was worse - because it wasn't even about disability, it just used a great athlete with prosthetic legs, soaring music, and a powerful voiceover from Muhammad Ali about "how great I am" to inspire the viewer about Toyotas.

And hey, I'm glad Amy Purdy got the work for a major ad. But it's still inspiration porn. Here's an Elizabeth Heideman piece on the superbowl ads making that point.

Finally - and I know this post has been long - what is it with prosthetic legs right now and  marketing? Do they rest in some kind of "canny valley," in which they are just strange enough and new enough to be cool, but not so odd to fall into the "uncanny valley?" I'm not sure.

At any rate, here's the take away: Fellow abled people, please don't write more op-eds on how inspiration porn is progress.

Inspiration Porn - Part I of II: Theory of Everything Edition

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Hey, so someone playing disabled won an Oscar last night. Later today I am going to write about the worst example of able-splaining I've seen in a long time, in which a non-disabled person tells everyone why inspiration porn is great. But first, here's a disability-related critique of Theory of Everything. Short version - it's about making albed people feel better.
The Theory of Everything is the embodiment of this idea. It is so keen to pander to able-bodied audience members’ disgust at disability, and to soothe the guilt they feel because of it, that it actually pauses to allow that “collective ‘Phew’ ” to occur during the film. James Marsh’s movie exists for two purposes: to make able-bodied people feel good about themselves and to win Oscars.
It's not just the representation of disability here, but also the common phenomenon of  "cripping up."

Like many other disabled people, I have often argued that disabled characters should, wherever possible, be played by disabled actors. When disabled characters are played by able-bodied actors, disabled actors are robbed of the chance to work in their field, and the disabled community is robbed of the right to self-representation onscreen. Imagine what it would feel like to be a woman and for the only women you ever saw in films to be played by men. Imagine what it would feel like to be a member of an ethnic minority and for the only portrayals of your race you ever saw in films to be given by white people. That’s what it’s like being a disabled person at the movies.
Harris, one of my favorite film critics on such issues, notes that it's certainly possible that some disabled people must be played by abled people when the script calls for movement between states. And yet:
 Even if we accept that Redmayne should get a pass to play Hawking, we are still left with a film that excludes disabled people while pretending to speak for them. The Theory of Everything is based on a book by an able-bodied person, adapted by an able-bodied screenwriter, and directed by an able-bodied director, and it stars able-bodied actors.
This is the real problem. There's no authenticity to the disabled experience within this (Harris goes on to contrast with Selma), but it has claims to authenticity.

It therefore is a film by abled people about disability in order to make abled people feel good about themselves.

More later.


Where Are You Going, Where Have You Been?

Sunday, February 22, 2015 0 comments

One of the things many of us EV drivers are guilty of, is plugging in whenever we have the opportunity to. We may not even need the extra range, but if there is an available 240V EVSE, or even a simple 120V outlet, and we're going to be at that location for a while, it's just too tempting not to plug in and grab some electrons while we're there.

Not that there is anything wrong with that, but I wonder how many i3 owners know their car records everywhere you've plugged in and stores the exact location? I've known this for a while now because a few months ago one of the readers here sent me an email pointing it out because it almost got him in trouble but I'll get back to that later in the post.

I'm bringing this up now because I had to bring my car in for service for BMW to inspect something. I'm beta testing new i3 software which will be released to the public in a few months so if I see anything out of the ordinary they want to check it out. So I dropped the car off at JMK BMW and a nice Ionic Silver i3 REx was waiting for me to use as a loaner. I had used this loaner before a few months ago when I had the new software installed on my car and love that JMK offers i3 loaners. It's a practice that all BMW dealerships that really want to sell i3s should employ, in my opinion.
My previous charging locations were still recorded, months after I used this loaner car. All I had to do is choose this entry and the car would direct me to my restaurant in Montclair, NJ. I could have also visited the homes of some of my fellow local i3 owners.

So as I headed out of the dealership I started the navigation system, and instead of entering the destination, I scrolled down to "Last Charging Stations" just to see if the addresses I charged at a few months back were still saved there. They were. My restaurant in Montclair and my home address were saved as destinations in the loaner's nav system. Then, as I scrolled down the list I saw addresses of all my friends who live locally and drive i3s. Their names weren't listed, but the navigation system stored the exact location of their homes - which I know because we are friends. Evidently they too had used this loaner i3 while their car was in for service. Since they charged the car at home, their addresses were recorded as "Last Charging Stations" and stored in the nav system. I erased all the entries that were addresses of the people I know, but I wonder how many of them realized they were leaving a record of where they live and charge for anyone who had the car after them to see.

I suppose it's not a problem if it's your personal car, but if you do use an i3 loaner from your dealer, and you don't want a record of where you plugged in logged in the car's navigation system, I'd suggest you delete the entries that were made while you had the vehicle before you turn the car back in. I know this isn't all that different from how navigation systems work on other cars. Many store the previous destinations that were entered in the system. However this seems a little more intrusive to me because your home address is being stored without you entering it into the system like you would have to do with a navigation system. Simply by plugging the car in you create a saved entry and the exact location is stored. I just want the readers here to know this, so they can decide if they want to delete their charging locations whenever they feel the need. I'm sure many i3 owners don't even realize this is happening.

Now getting back to the original person who pointed this out to me. About six months ago I got an email from one of the readers here. He wanted to tell me a funny story of what happened to him with his i3. One day his wife was using the car for the first time by herself and was getting to know the iDrive system. She came across the Last Charging Stations category. Scrolling down the list she saw an entry which was a street in a town that wasn't too from where they live. Unfortunately for him, it was on a street and in the town were an old girlfriend used to live. When he came home that night his wife asked him about it, and he had to explain why he was there and that it was a public charging station which he needed to stop off at for a little while so he could make it home one night. He explained and they laughed about it, and it wasn't some serious inquisition to begin with, but it was a little reminder about how this feature could get someone in trouble if they went somewhere they shouldn't have.

This may or may not be a concern for you personally, but I want to at least point this out so i3 owners are aware of it. It's very easy to delete an entry; you just hover over the saved destination, press the options button and then delete. Unless you're doing something you shouldn't be doing I don't see any reason to delete entries in your personal car, in fact storing them for future use is a great feature, and is the reason why the car does it in the first place. However, when using an i3 loaner from the dealership, I'd prefer that my home address isn't permanently stored in the nav system and I'll be deleting the entries I created when I return the cars I have on loan from now on.

CALL TO ACTION - New Jersey has a great new plan; Providers want to crush it.

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The Autistic Self Advocacy Network has just alerted me to an ongoing issue in the state of New Jersey. Amazing, New Jersey has come up with a great new plan to move away from group homes and institutions and bring real support into the communities.

That model threatens providers' revenue streams, though, and they are fighting back. Here's what ASAN has to say.
Last month, the State of New Jersey did something important. For years, people with intellectual and developmental disabilities have been stuck in places where other people controlled every aspect of their lives. Now, the State is proposing a new plan to deliver community services in the community and require those providing housing supports to respect the rights of people with disabilities to make their own decisions. The rule also prevents providers from warehousing people with disabilities in segregated homes and facilities just for disabled residents.

Unfortunately, the provider lobby is fighting back. Provider organizations are attacking the new rule, with one prominent NJ housing provider calling it a “misguided social experiment”. Do you think the rights of people with disabilities are a misguided social experiment? We don’t - and we want your help telling the State the disability rights side of the story.

These new rules are out for public comment till February 26th - we would like you to help stand up for disability rights by e-mailing your feedback to mahs.hcbs@dhs.state.nj.us. To help, we’ve provided the following sample text to assist you. We hope you will customize it and make it your own by sharing why you believe inclusion matters for people with disabilities.
At the link, ASAN offers some language to help you write your letter. Every letter counts. You do not have to be a New Jersey resident to comment and we need your help. Usually, these kinds of calls to action are to protest a bad plan. Instead, here we have a chance to support the optimal model for the future.

Write  - mahs.hcbs@dhs.state.nj.us.

Tell them you support community-based care!

Thank you.

Sunday Roundup - Abortion, Compliance, Language, History

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I've missed a few Sundays, mostly because so much has been going on that I can't stop writing long enough to breathe and assess. I'll try to do better. Here's the week.

Published - Facebook and Fear: The story of one woman's decision to keep her child with Down syndrome, facilitated through some quick Facebook messages.

My posts:
This week will involve a lot of Latin as I prepare an academic paper. That usually means either frenetic blogging on the side, or radio silence. The way things have been lately, I'd bet on the former.

    First Impression: Lincoln Navigator

    Saturday, February 21, 2015 0 comments

    I had the opportunity to ride around town in the Lincoln Navigator while I was in LA attending the Essence Black Women in Hollywood Event. I was very impressed with this vehicle because its smooth and powerful and comes equipped with a Twin-Turbocharged 3.5L V6 EcoBoost Engine.

    Second-Row Seating

    • Comes standard without console for easier access to third row
    • Or get bucket seats with center console
    • Or get a bench and seating for eight
    • Bucket seats are heated with two settings

    Best-In-Class Third Row Leg Room

    Rear seat passengers enjoy first-class comfort.
    • Best-in-class third-row leg room
    • Standard PowerFold® third-row seat with true fold-flat design


    Vehicle Highlights:
    16 city/22 hwy/18 combined mpg (Navigator 4x2) 15 city/20 hwy/17 combined mpg (Navigator L 4x2) 15 city/20 hwy/17 combined mpg (Navigator 4x4) 15 city/19 hwy/16 combined mpg (Navigator L 4x4)

    Maximum Seating Capacity: 8 

    Wheels Available 20-inch polished aluminum
    20-inch dark finish aluminum
    22-inch polished aluminum

    Transmissions 6-Speed Automatic Transmission with SelectShift 

    61,920 Starting MSRP

    I have to thank Lincoln Motor Company for a great experience in LA! 

    Anti-Women, Anti-Information: Indiana abortion bill advances.

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    A few weeks ago I wrote about an anti-choice bill in Indiana that was designed to drive a wedge between disability rights and reproductive rights activists. I argued:

    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.

    How Not to Report on Violence against Disabled Children

    Friday, February 20, 2015 0 comments
    In Spokane, a woman stabbed her autistic son in the neck. Here is 100% of the information on the victim (link here):
    Court documents say the 17-year-old son had several cut marks on his neck and throat, but officials say his wounds were not life threatening.
    The rest of the piece is about how hard life must have been on the mother, building sympathy for her. It perpetuates the idea that autism is so terrible that it must be cured, eradicated, vanished. That violence against autistic people is reasonable. That (to cross news stories for a minute), it's better not to get vaccinated than to risk autism (NOTE: Vaccines do not cause autism. END NOTE). This kind of little news piece is part of the problem.

    I wrote about this after the death of London McCabe.
    London had autism. Media coverage of his death has widely focused on the stresses and challenges of raising a child with autism. In other words, the stories are about his mother and her problems finding help, not the dead boy.
    This is a mistake. In all cases of violent crime, but especially those involving people with disabilities and their caregivers, we need to mourn the victims, rather than explain away their deaths. Unfortunately, whenever these terrible kinds of tragedies take place, which they do far too often, we do just the opposite.
    Here, then, is a perfect example of what not to do.

    And here's the thing, even if the mother's story is in fact tragic and filled with difficulty, even if she's struggling with all sorts of issues, even if she needed support that she didn't get, that's not the story we should be telling after an event like this. I want to tell stories about parents needing and getting more help, while advocating for policies that change lives. I tell these stories all the time, highlighting individuals and organizations, arguing for or against laws, and so forth.

    But after an act of violence, we need to tell the boy's story. We tell about his life. We make sure that he's represented as a full person who didn't want to get stabbed in the neck. We must not blame the disability.

    This story does exactly the opposite, going to a local parent at the Northwest Autism Center who ALSO talks about how hard her life is, not how meaningful her child's life is.

    Disability community - we need to call this out, give better models to journalists, write to the NW Autism Center, and otherwise change this mode of journalism.

    Internet Communities and Special Needs Parenting

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    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?




    Lavall Hall - The Cult of Compliance Claims a New Victim

    Thursday, February 19, 2015 0 comments
    It started, as it so often does, with a family member calling 911 for help for a loved one in mental

    health crisis. Lavall Hall was outside, in Miami Gardens, when police arrived. He had a broomstick.
    Miami Gardens police officers Peter Ehrlich and Eddo Trimino fired their Tasers at Lavall Hall after he struck them with the metal end of a broomstick. The Tasers had no effect. Then they chased Hall for about half a block before he turned and charged at them. As Hall neared, Trimino fired his gun five times, striking Hall twice, once in the arm, and the kill shot to his chest. Hall was still alive and “struggling” when the officers handcuffed him and placed him faced down on the street. He died moments later.

    Note - He was running away and the police chased. Then when he turned, they were too close to maintain space. As I wrote about for the death of Kristiana Coignard and Kajieme Powell, the minute we enter a situation where the police have decided that the suspect must obey commands or be shot, shooting is inevitable. Here's Hall's death as described by the chief [my emphasis]:
    That version of Sunday morning’s violent encounter between Lavall Hall, 25, and the two Miami Gardens cops came from Miami Gardens Police Chief Stephen Johnson, as he addressed the media at police headquarters Tuesday night.
    “Tremino encountered the subject and gave him several commands. He continued to be combative,” said Johnson. “They did the best they could.”
    They may well have done the best they could. But they didn't do enough. 
    As Hall headed east on Northwest 191st Street, Tremino gave chase. “Mr. Hall at that time began to physically attack the officer,” Johnson said.
    After hitting Tremino in the head with the broomstick, Johnson said Tremino fired his Taser. It had no effect. Hall headed south on Northwest Second Court, about half a block from his home. Tremino continued to chase. As Hall turned and charged toward the officer, Johnson said Tremino fired his weapon five times.

    “He gave him several commands,” said Johnson.

    Ehrlich was treated at the scene. Tremino went to the hosptial and received stitches. Both officers are on paid administrative leave. Johnson said both officers are veterans who have received crisis intervention training.
    CIT is useful, but it's not a panacea. Maintain distance, call backup, be ready to gang tackle even if it means being hit with a broom handle.

    These officers will be found innocent of any wrong doing (let alone criminal charges), but once it became a comply-or-die situation, that's a death sentence for people with psychiatric disabilities who cannot comply.

    And so Lavall Hall is dead. Last week it was a man throwing rocks in Pasco. The week before, Coignard.

    Who will die next week because police insist that people in mental health crisis be normal or be killed?


    What the Frunk?

    Wednesday, February 18, 2015 0 comments
    The front storage compartment (Frunk) of my i3 after driving a few weeks on the salt-covered winter roads of New Jersey - yuck!
    First, let me begin by saying I was one of the people who really didn't mind the fact that the i3's front storage compartment (affectionately called the "frunk" by many since Tesla initially coined the term for the area under the hood of the Model S) wasn't waterproof. I never envisioned keeping anything up there that I would need to access frequently and since my Electronaut Edition i3 came with a nice storage bag that would keep whatever I put in there nice and dry, it was really a non-issue as far as I was concerned.

    It looked a little better when I first got the car. Of course everything looks better new, but being exposed to all the elements means you really can't store anything up there that isn't waterproof & durable
    It was so inconsequential to me at the time I didn't even list it as a minor annoyance when I did my initial likes & dislikes posts back in June. Well after living with the car for nine months now, I have some different perspectives and I think I'll soon go back and do an update on what I like and don't like about the i3. One of the things I'll add to the dislike list is the fact that the frunk area is easily penetrated by moisture, dirt, leaves and anything else that would find its way under the hood of a traditional ICE car.
    Leaves can make their way into the frunk also, as found out by BMW i3 Facebook group member, Michal Cierniak

    So why didn't BMW make this area waterproof? I have never gotten an official answer but my guess is because it would add weight and cost. Plus, since it is such a small compartment, they figured the vast majority of people would only use it for things like extension cords, a tool kit and the occasional use EVSE, all of which are OK to get wet once in a while. They probably also figured most people would get a bag to put those items in, and they even sell one such as the one that I have. Because I have an Electronaut Edition i3, mine was free and embroidered "Electronaut Edition." It keeps the items in the bag clean and dry, but the bag itself gets very dirty and isn't really pleasant to handle when it's covered in dust and now road salt. 








    Which one would you prefer to handle?

    The i3 has a lot of mechanical components up in the frunk area; they are just hidden by the removable screens on both sides of the frunk. Once you remove these snap on screens, you can see that area looks basically like a traditional ICE engine compartment, minus the engine of course. The storage compartment only occupies a small section of that area as opposed to the Model S. Since the Model S is so much larger than the i3, Tesla was able to utilize a huge portion of the area under the hood for storage, creating a large front trunk which they called the frunk and still have enough room to fit whatever mechanical parts they located up there. The i3 didn't have much space to spare since the front area of the car is so small, so the storage compartment seems like more of an afterthought than something that was a well planned design feature.
    After removing the plastic frunk, and the snap-on shields on both sides of it, what you see looks very similar to a conventional gasoline or diesel powered car (minus the engine!) Photo credit: Tim Hood
    If waterproofing the entire area up there just wasn't cost effective, or if it was going to add too much weight, then I do understand the reasoning, but what they should have done was provide a nice frunk cover that could snap on and provide - at the very least - a water-resistant seal. Perhaps some ingenious entrepreneur will manufacture and sell such a cover...

    * If you want to use my car as the mold you know where to find me, and I'll be your first customer ;)

    Post 500: I wrote a book.

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    This is the 500th post on How Did We Get Into This Mess? I started the blog as a place to dump essays that I couldn't sell, as I was new to freelancing in May of 2013, and caught up in the rush of public writing. I wrote, and wrote, and wrote, and pitched and landed about 1 in 10, leaving me with a lot of extra prose lying around. And so, I started this blog. My rate of successful pitches is more like 3 of 5 now, because I have relationships with editors and I got better at knowing what kinds of pitches find homes. And yet, the blog continues and has become its own thing. About 1000 people a day come here, a number that though small compared to commercial sites, seems preposterously grand. Thank you for reading, commenting, sharing. I will continue to do my best to say interesting things in clear ways.

    Yesterday, my book came out (this is the publisher's website). Below I offer a few thoughts about connections between my scholarly work and my public writing.

    Book Selfie!
    Here's the blurb:

    In Sacred Plunder, David Perry argues that plundered relics, and narratives about them, played a central role in shaping the memorial legacy of the Fourth Crusade and the development of Venice’s civic identity in the thirteenth century. After the Fourth Crusade ended in 1204, the disputes over the memory and meaning of the conquest began. Many crusaders faced accusations of impiety, sacrilege, violence, and theft. In their own defense, they produced hagiographical narratives about the movement of relics—a medieval genre called translatio—that restated their own versions of events and shaped the memory of the crusade. The recipients of relics commissioned these unique texts in order to exempt both the objects and the people involved with their theft from broader scrutiny or criticism. Perry further demonstrates how these narratives became a focal point for cultural transformation and an argument for the creation of the new Venetian empire as the city moved from an era of mercantile expansion to one of imperial conquest in the thirteenth century.
    Some of my public writing is, of course, about medieval history. Crusades, popes, saints, medieval-like rhetoric from Sarah Palin, Christopher Columbus - these are all topics about which I've written essays that emerge directly from my expertise in medieval history. I am honored to be a public medieval historian and try to represent my profession well.

    But really all my writing is based on the habits of mind I've developed as a scholar and a teacher. I gather data, I organize it, I pick it apart, I generate a thesis, and I try to explicate it as clearly as possible given the word-count restrictions and the venue. Moreover, thanks to my academic training I know what it's like to build a body of knowledge and then work it hard. I have no background in disability, media criticism, or law enforcement - but several years into these beats, I'm beginning to feel pretty grounded in all of them. Most all, just like with my medieval history, I have a sense of what I don't know. As any scholar recognizes, knowing one's limitations is critical to growth, to collaboration, to direct future studies. My reading list is immense, and that's a good thing.

    There's something more direct, too. I write about memory, narrative, and language. I'm interested in what people did and do, but equally engaged with how we remember the past, how we represent ourselves and our histories in image, word, and text, and I believe such questions of representation matter. That's what my book's about - a group of stories, all of which present meaningful fictions about a recent event, and their consequences. It's also why I write about language and disability, language and gender, and related issues. The words we use to shape our reality, and the ways in our reality is revealed by the words we use, both consume my interest.

    So thank you for reading. My book is now a real thing in the world. You could use it as a coaster. You could use it to squash spiders. You could even read it. And, of course, I'd be grateful if you bought it or (for academics) asked your library to do so.

    Thanks, as always, for reading.

    Introducing the 2016 Ford Police Interceptor Utility

    Tuesday, February 17, 2015 0 comments

    The top-selling police vehicle in America is getting a major update, and Ford is offered the first look at the Chicago Auto Show.

    Since its debut three years ago, the Ford Police Interceptor Utility has quickly become the law enforcement community’s vehicle of choice, built with community safety and the rigors of the job in mind.

    A panel of 25 law-enforcement experts provided their input and expertise to help design the 2016 Police Interceptor Utility, which features a new front and rear design, new headlamps and a new instrument panel.

    The 2016 model is the most innovative police vehicle ever to hit the road. In addition to a new liftgate release switch and standard rear camera, Ford is the first manufacturer to bring to market Available Surveillance Mode technology, which warns the driver when someone is approaching from behind and automatically raises the driver’s window and locks all doors.

    The standard six-speed transmission also features a unique Pursuit Mode, which automatically optimizes upshift and downshift performance when aggressive driving is detected.

    And it’s fitting that the 2016 model is making its debut at the Chicago Auto Show: the Police Interceptor Utility is built at Ford’s Chicago Assembly Plant before being sold in more than 80 markets worldwide.


    Boys and Girls - The Sexualization of Language

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    Open a new browser window and do an image search for boys. Here's what I got.




    All but two images in the first four rows are, in fact, boys (there are two adult male actors in row three).

    Now do the same thing for the word "girls."


    It's breasts and butts and lace and sexualized poses. Around image 40 or 50 you start to get the occasional actual child (from girl clothing ads), but as far as I scroll down, it continues to be mostly sexualized images of adult women.

    Now there are plenty of other issues here in terms of race and body type and so forth, but right now I just to focus on the gender and age issue. 

    I spend a lot of time writing and being concerned by the constant sexualization of girls throughout their whole lives, in fact even before they are born. I call it cradle-to-grave sexism.  Every time someone makes a "better get a shotgun" to an expectant father of a girl, it reinforces the idea that the whole job of the father is to control his daughter's sexuality. Every flirty doll intended for children. Every shirt about dating or getting money from daddy or otherwise linking sexist perceptions of adult behavior to children. Every "sexy" Halloween costume for girls. It's endless. here's the word "girls" itself. There are no girls. There's no room for a girl to just be a child.

    And here we see that even the word "girl" has been locked within this sexualized framework. Even the word!

    And unlike when there's some sexist product we can fight or boycott or protest, I have no idea what to do here. This is not Google's fault, but rather the aggregation of use and links and imagery flung up on the page. I have no solutions today.

    [Note: This post was inspired by a friend, J., who was talking about gender pronouns with her daughters, and thought Google might help. Google instead showed this].


    Is Church Only for the Neurotypical?

    Monday, February 16, 2015 0 comments
    In America, an English-language Jesuit magazine, Mary Berth Werdel (a prof at Fordham) has a powerful essay about church and her autistic son. She begins with diagnosis and all its complexities, a story I've heard many times from many parents (which doesn't make this story less important or well-written!), but I really want to focus on the church issues.
    In times of stress one often turns to faith for guidance. But my connection to organized church was struggling. Peter could not handle the stimulation of church. When it came time for the bells to ring during Mass, Peter would cover his ears and scream. In an attempt to help Peter understand the bells, the pastoral associate let him touch them after Mass. But the next Sunday the fear response was the same. One thing was clear: The bells I heard in my ears were not the same sound Peter was hearing.

    So we bought Peter a headset he could wear during Mass. It was not plugged into anything but something to dull the senses. We had many looks of disgust from parishioners who I can only assume thought Peter was listening to an iPhone. But I was not going to let other people’s unawareness keep my family from Mass; Peter’s fear, maybe. One Sunday we were in the car on the way to Mass when Peter started screaming, “Mommy do you have my headset?” On a scale of 1 to 100, his anxiety at that moment was a 99. I was forced to reflect. What was I doing? How is Mass helping Peter? What place of horror and fear is he associating with church? What was he learning about his parents and their ability to keep him safe? What was I really asking of him?
    First, there's the headphones and the states.  I also noticed a similar situation in this piece on Judaism and special needs.
     My own family left the first synagogue we joined because we felt unwelcome bringing a baby to Shabbat services (we got narrow-eyed old-lady hissy faces if Josie so much as clucked) and no one welcomed us to the cliquey family service. I can only imagine how much less welcoming the shul would have felt to a family who had an older child with special needs. In our current shul, however, such families are welcome, and the general vibe is infinitely more inclusive. Embracing difference benefits all Jews, not just Jews with disabilities.
    Notice how the headphone issue and here the description of the "clucking" are both about using hostile stares to reinforce social norms, norms to which these children cannot conform. That's the kind of microaggresion I wrote about for the New York Times. These little pains hurt, when stacked on each other.

    Second, though, and back to Werdel, is the significant evolution of her thinking. She moves from trying to make it possible for her son to do the things she finds important, to trying to see the world through his eyes. This is vital and so hard.

    Werdel ends with a plea for inclusion:
    I no longer pray for normalcy. I am starting to believe that praying for and including that term sets up a system that by its nature demands exclusion. Instead I pray that Peter and I will grow more relational. I want Peter to feel love and express love. And I pray that one day Peter and others like him will be met by a living church that meets all with relational community and unconditional love.
    I always like to talk about inclusion, not same-ness. That's the pathway forward for churches that want to do better, and of course there are many people in all faiths who are, in fact, trying to do better.

    In the meantime, though, I leave you with this: If your church is not explicitly and pro-actively (not reactively) inclusive, it is betraying any claims to universality.

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