Day of Mourning – 3/1/2015

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

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.

Christian Holy War – Next on FOX

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

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!

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

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!

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

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.

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

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

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.