Toronto District School Board Gets “Proactive” About Indigenous People

Jobs within the Toronto District School Board done by “Chiefs” will now be done by “Managers”, out of respect for Indigenous cultures.  The move was taken after considering the calls to action of Canada’s Truth and Reconciliation Commission, which published a report in 2015 about the Canada’s history, stretching over a century, of placing Indigenous children in residential schools.

The issue is that no one had complained. Toronto District School Board Curator of Indigenous Arts and Culture Dan Redbird says no one from the Indigenous community asked for the change, and that “Chief” isn’t a word that has anything to do with Indigenous traditions.

“It was an imposed word that the government introduced with the Indian Act back in the 1800s.” Redbird told Nick Bosvert of CBC News.  

He acknowledged that it’s come to be used as a micro-aggression, and likes that the Toronto District School Board has taken the step, but “doesn’t envision a dramatic impact from the change.”

Image Description: Young white woman wearing a white blouse and dark blazer rests her head on her laptap keyboard. Her long brown hair is in a ponytail.

Content Note: Residential Schools, Nothing for Us Without Us, Abuse, Missing and Murdered Indigenous Women, Forced Sterilization, Retard

Toronto District School Board Wants to be “Proactive”

Here’s some more about the word “Chief” that I learned from an interview on CBC Radio One’s “As It Happens” on October 11:

  • It means “leader”
  • Its origins are Roman and Old French
  • In French, it’s “chef” (which the Toronto District School Board will not be replacing)

The changes that the Toronto District School Board plans to make affect approximately 20 job titles.

I have thoughts.

The “As It Happens” interview was with  Ryan Bird, the Toronto District School Board’s Manager of Corporate and Social Media Relations. The interview in its entirety can be heard here.

Click for a transcript, at “Toronto District School Board: No Chiefs”

I was in the car with my father as we listened to the interview, and it wasn’t long before I turned to him and said, “And here’s where my friend Geoff would say, ‘Did anyone complain about this?'”

Just as interviewer Carol Ott said, “Did you get complaints?”

Geoff and I have been around and around on the issue of people deciding for other people what *should* offend them. Often it’s been disability-related – Geoff has asked why people who aren’t disabled should decide what terminology should offend disabled people, like the word “retard”, and I’ve said, “I didn’t decide that ‘retard’ should offend intellectually disabled people – they’ve told many people themselves that it does.” More recently, it’s been about the choice to keep Washington’s football team the “Redskins” – Geoff says that Indigenous people don’t find the name offensive, and sends me media clips and articles that support his position. I have media clips and articles of my own by Indigenous people that do find it offensive. We do what we do in our debates on most things – agree to disagree.

And if an organization using “Chiefs” instead of “Managers” is offensive to some or all Indigenous people, the terminology should change. I’d absolutely support the Toronto District School Board ( or any organization) talking to the Indigenous community regarding changing anything that they see as potentially concerning , asking “Would changing this be healing?” and acting on those recommendations. But the Toronto District School Board didn’t do that, or if they did they appeared to reject the recommendations of the community, in favour of being “proactive” (Ken Bird’s word) – deciding for the Indigenous community that they *should* find the Toronto District School Board’s use of “Chiefs” offensive, and therefore worthy of addressing before people started to complain.

And they’re wondering why there’s been mixed reaction to their move that they didn’t anticipate.

“Nothing for Us Without Us”

The disability advocacy community has a saying – “Nothing for us without us”.   It reminds people that make the decisions that affect disabled people that disabled people need to be involved in the process. Policy that’s meant to help disabled people, made without consulting disabled people, could end up being useless to us.

“Nothing for us without us” kept going through my mind as I listened to this interview. The point of the Truth and Reconciliation Commission and its final report was to document the ways that Canada’s government hurt Indigenous people with its insistence that it knew better than their communities how to raise their children (and the horrific abuse that went on in the residential schools) and exploring ways of “establishing and maintaining a mutually respectful relationship between Aboriginal and non-Aboriginal peoples in this country.”

My opinion only, of course…but it’s not “proactive” or respectful to make policy based on what non-Indigenous people think should insult Indigenous people without consulting them, especially when:

  • There’s plenty of easily-accessible evidence out there to suggest that this might not be the case – in this case, commentaries on the word “chief” and its origins, as well as its relationship to Indigenous communities, by both Indigenous and non-Indigenous people. They all agree – it’s a word imposed on Indigenous people, not one with any significance to Indigenous people themselves.
  • There’s no indication that the issue that the policy addresses is actually an issue.
  • The “proactive” behaviour is actually an example of historically problematic behaviour – Non-Indigenous people deciding that they know what’s best for Indigenous people and going ahead and doing it, without caring what Indigenous people think about it.

Again, not “proactive” – offensive. I find it offensive, at least, and there seems to be some evidence that Indigenous people do as well. Indigenous Canadian author Robert Jago expressed his feelings on Twitter:

Are Good Intentions Always Enough?

I’m not suggesting that the Toronto District School Board didn’t have good intentions. I’m suggesting  its action was tone-deaf.

I’m not an Indigenous woman, and I won’t pretend to know what it’s like to live in an Indigenous person in Canada. But have an imagination, empathy, and as a disabled woman, membership in a group with a similar (not identical, but similar) history of forced institutionalization by the government in highly abusive environments, marginalization, and ongoing discrimination…and hearing about this action by the Toronto District School Board, the rationale behind it, and their self-congratulatory pats on the back for it, made me furious.

I’m a writer and I believe in the power of words to shape attitudes and actions. I’ve had this debate with friends as well. But reconciliation won’t happen because 20 people in a school board get a word in their title changed. You want to make an impression on the kids your schools, Toronto District School Board?  Get some Indigenous speakers in to talk about life for kids their age in reservation towns like Attawapiskat.

Let them learn about the class action suit launched earlier this month by Indigenous women, alleging that they’d been sterilized without consent in the 1990s.

Let them hear stories from the families of over 1000 missing and murdered Indigenous women.

Let them hear stories and ask questions, and find out how they can help. I guarantee that some of these kids have never thought about these issues before simply because no one’s ever talked to them about them…and that once they’re thinking, they’ll want to learn more…and get involved in the dialogue between Indigenous and non-Indigenous people about the best ways to bring about reconciliation.

Dialogue, not assumptions. Dialogue will bring about change – it won’t be as easy as changing signs on office doors and printing out new business cards for 20 employees, but it will be deeper and more effective and we’ll all be better people for it.

All That Being Said…

Perhaps there are Indigenous people on the Board at the Toronto District School Board who thought this move was a good idea, and the Board was acting on their guidance. If that’s the case, people should please let Ken Bird know that he needs to speak to this – because nothing in the nearly-eight-minute interview with “As It Happens” or in the multiple media accounts that I read suggests that the Toronto District School Board made this change with any consultation from the Indigenous community.

As always, feel free to correct me if I’m wrong about any of this.

Meryl Streep, We Don’t Need Your Outrage

I blogged about the incident where Donald Trump mocked disabled reporter Serge Kovaleski back when it happened during the primaries, and frankly I roll my eyes a little bit every time someone brings it up as “his most shocking moment” or something equally hyperbolic. If it’s online I leave a link to my blog post and move on. But I’ve just seen on CNN clips of Meryl Streep’s reference to the incident in her otherwise lovely speech at last night’s Golden Globes about the incident, and it truly pissed me off. So here I am.

Content Note:  Donald Trump, Bullying, Nothing for Us Without Us, Ableism

"No Thank You" against a cream-coloured background. A black pen sits to the side. Keyword: Meryl Streep

 

Image Description: “No Thank You” against a cream-coloured background. A black pen sits to the side.

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The captions are very good on this video. To access them, hit the icon on bottom of the frame (toward the right side) that looks like an index card.

While I agree that Donald Trump mocking Serge Kovaleski, and his refusal up to this morning to apologize for it, is crude and tasteless, and that, as Meryl Streep said, Trump does have more “power and privilege” than Koveleski, I take absolute exception to the idea that Kovaleski has “no power to fight back.” He could have spoken out about the incident when it happened. I’m assuming that he chose not to, but I don’t even like to speculate about that, because I’m tired of people assuming that they must know how he feels about the incident.

People have certainly been clear about how they feel, though, and the resulting narrative is that this incident was the lowest point of Trump’s campaign. Not his statement that Mexicans are criminals and rapists. Not his campaign promise to deport 11 million people. Not his proposed Muslim ban, or the comments about sexual assault, or the promise to repeal Obamacare (which will affect many disabled people.)

No, apparently it was the mocking of Serge Kovaleski (again, in extremely poor taste, but are we surprised?) Because he’s a disabled man, and because we all know that disabled people are powerless and can’t fight back.

I do get that Meryl Streep’s overarching point was that when the President bullies people, other people take it as permission to bully people. But I’ve fought hard (and am still fighting hard, with other advocates) to get society to see that disabled people are *not* powerless.

I am *not* powerless.

I do not let people like Donald Trump take my power.

And I don’t need the outrage of people who see me as powerless. Thanks anyway, Meryl Streep.

And you know what else I’m tired of, Meryl Streep? And CNN, for that matter? People not calling this gentleman by his name when they’re speaking about him. His name is Serge Kovaleski. He’s a Pulitizer Prize-winning journalist. Not “a disabled journalist” or “the disabled journalist”. Your outrage rings hollow when you can’t even be bothered to learn his name, especially when you’ve admitted that you’re reading a pre-written speech. Google is your friend.

Have a great day, everyone!

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“Star Trek Beyond” Writers Make Sulu Gay Despite George Takei’s Objections

So there’s an interesting debate going on about the new Star Trek movie, “Star Trek Beyond”. The movie’s writers and series original George Takei are disagreeing about how the Hikaru Sulu character is portrayed, and fans are clearly divided on it. I wasn’t sure how I felt about it myself, at first.

But I know now what’s made me so uncomfortable and why.

Content Note:  Nothing for Us Without Us, Racism, Homophobia

George Takei publicity shot - Asian man in his 70s, dressed in a blue suit and blue dress shirt, smiles at camera and makes Star Trek "Live Long and Prosper" sign with his right hand. Keyword: George Takei

Image Description: George Takei publicity shot – Asian man in his 70s, dressed in a blue suit and blue dress shirt, smiles at camera and makes Star Trek “Live Long and Prosper” sign with his right hand.

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About the Original “Star Trek”

The original “Star Trek” series only ran for three seasons, but it was remarkably progressive on several front. The Lieutentant  Nyota Uhara character, played by black actress Michelle Nichols, was not only the first black major character on a network series, but was part of the command crew on the Enterprise’s bridge – black, a woman, and fourth in command of the ship. When she was considering leaving the show, Dr. Martin Luther King Jr. told her that she had to stay, saying, “For the first time, we are being seen the world over as we should be seen.” The Uhura character was also part of the first interracial kiss on television, when she kissed Captain Kirk in the “Plato’s Bridge” episode.

So the show literally explored new frontiers. But sexual preference wasn’t one of them, and it was ultimately because “Plato’s Bridge” and the kiss were so poorly received; Roddenberry supported LGBTQ equality, but felt he had reached the line of what the American public was ready to accept from network television, as he discussed with George Takei (not openly gay until 2005) at the time.

The writers of “Star Trek Beyond”. in the name of diversity and as an homage to George Takei as “a sci-fi icon and beloved LGBT activist” have made Sulu’s character gay in this reboot of the original series. And George Takei’s reaction was unexpected:

“Except Takei wasn’t overjoyed. He had never asked for Sulu to be gay. In fact, he’d much prefer that he stay straight. “I’m delighted that there’s a gay character,” he tells The Hollywood Reporter. “Unfortunately, it’s a twisting of Gene’s creation, to which he put in so much thought. I think it’s really unfortunate.”

Takei explains that Roddenberry was exhaustive in conceiving his Star Trek characters. (The name Sulu, for example, was based on the Sulu Sea off the coast of the Philippines, so as to render his Asian nationality indeterminate.) And Roddenberry had always envisioned Sulu as heterosexual.”

Takei wondered why a new character that was gay wasn’t introduced, instead of making his character gay, and after a discussion with John Cho (who plays Sulu in “Star Trek Beyond”) and director Justin Lin, and an email from Simon Pegg (one of the wo-writers and the actor protraying Head Engineer Montgomery “Scotty” Scott) was under the impression that the creative team had decided to change course and take this route:

“‘I really tried to work with these people when at long last the issue of gay equality was going to be addressed,” Takei says. “I thought after that conversation with Justin that was going to happen. Months later, when I got that email from Simon Pegg, I was kind of confused. He thinks I’m a great guy? Wonderful. But what was the point of that letter? I interpreted that as my words having been heard.'”

Simon Pegg was so surprised by George Takei’s reaction to making Sulu gay in “Star Trek Beyond” that he felt moved to approach the media and express with his disagreement with Takei’s criticism. His points included:

  • Concerns about tokenism
  • Sulu’s sexual preference would be another aspect of a character of a that the audience already knows, not *the* defining aspect of a brand-new character
  • Concerns about timeline issues – “…the audience would infer that there has been an LGBT presence in the Trek Universe from the beginning (at least in the Kelvin timeline), that a gay hero isn’t something new or strange. It’s also important to note that at no point do we suggest that our Sulu was ever closeted, why would he need to be? It’s just hasn’t come up before.”
  • Since the Roddenberry’s decision not to explore sexual orientation in the original show was due to the time in history, and not an artistic one, it’s appropriate to do so now.
  • The decision shows that there are LGBTQ people everywhere – through time and across timelines, and it sends a positive message.

The thing is, from what I’ve read of the way that George Takei responded to the decision, I don’t think that he disagrees with most of this. All media accounts indicate that he’s was happy to include a gay character in the movie. He just didn’t want it to be his character, who he played as  heterosexual despite the fact that he’s a gay man, for a number of reasons besides the ones cited earlier:

  • He doesn’t believe that a gay man in the 23rd century would ever be “closeted”, the way he was in the original series. The Hollywood reporter notes that this creates some timeline issues, and I don’t understand the reasoning – it apparently touches on issues of the reboot’s timing in relation to the original story’s, and I didn’t realize that there was an issue here. I thought that the reboot was simply a re-imagining of the original series? Maybe someone can explain this to me.
  • He felt it would be better for the film’s gay character to have an acknowledged history of being gay.
  • This year is the 50th anniversary of “Star Trek” and Takei feels that this movie should honour Roddenberry’s original vision

This debate, in the large sense, sounds familiar to me, and I don’t like it.

Thoughts on George Takei, Sulu, Acting and Being Heard

I’m an actress. Not recently – it’s been quite some time since I’ve been on the stage. And I never played a part for as fraction as long a time as George Takei did Sulu, so I can only imagine how he must have felt about that character after all the development, the rehearsing, and the hours of shooting. I got attached to my characters after playing them for only very short runs on a stage in front of a small audience. Sulu was the character that launched and drove George Takei’s career, that made him an internationally-known name – he’s played Sulu for long periods off-and-on for 50 years.

And then some straight people (admittedly it’s an assumption that John Cho and Simon Pegg are straight, but they are both married to women and nothing in the media suggests that they are gay) come along and tell Takei that they’d like to change something major about the character.  As an homage, they say. They’d change an element of Sulu’s character that is very personal and life-defining for anyone, especially so for Takei given his personal life experience.

I would have said “I’d prefer that you didn’t,” as well.  And it’s not as if George Takei wasn’t open to the idea of a gay character in the movie and didn’t offer some thoughts on what he, as an original cast member and a gay man, would prefer to see.

But the writers, who weren’t even born when the original “Star Trek” aired, decided that they knew better than George Takei about:

  • The original “Star Trek” and Roddenberry’s vision
  • George Takei’s discussions with Roddenberry about addressing issues around sexual preference on the show
  • George Takei’s experience developing and playing the Sulu character
  • George Takei’s experiences as both a closeted and openly gay actor in Hollywood over decades

They decided that the input of George Takei,  who’s lived several types of experiences related to Sulu and his development and portrayal over 5 decades, wasn’t valuable given the narrative that they wanted to push (as straight people who weren’t involved with the original show at all) so they disregarded what Takei said.

And expected that he’d be honoured by it.

George Takei said himelf, “I interpreted that as my words having been heard,” but they obviously weren’t.

Members of the disability community, does any of this sound familiar?

And obviously George Takei might not feel these things about the whole business. These are just things that struck me, and made me think, “Well, all of that sounds very invalidating.” That’s through my filter – I don’t presume to know how George Takei feels, I can only speculate on how I’d feel in the situation, knowing that this sort of experience is a common one for disabled people – decisions about the things that are important to us get made without our input, and even when we’re asked we often end up feeling unheard.

Again, my filter – you might not see it this way, but if you’re not disabled then we’ve got some different life experiences, and I might not pick up on some things that you pick up on…

Bottom Line

I love the original “Star Trek”, I’ve enjoyed this movie reboot of the story, I’m all for diversity on the big screen and I’m thrilled to see the “Star Trek” franchise continue to push the limits.

I’m just a little disappointed by how this particular issue played out. How about you?

 

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The Problem with “Grace”

Some of you may have seen David M. Perry’s recent article in “The Atlantic” that analyzes the disability stereotypes in “Grace”, the anti-Trump ad produced by the Priorities USA Super PAC for Hillary Clinton’s campaign. It’s a terrific article about how even when advocacy has the best of intentions, it can backfire.

Content Note: Election 2016, Hilary Clinton, Infantilization, Exploitation, Nothing for Us Without Us, Racism

The words Election 2016 in blue over the waving flag of the United States. Keyword: Grace

Image Description: The words Election 2016 in blue over the waving flag of the United States.

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I’ve been watching reactions to “Grace”. Non-disabled people see “Grace” as a slam-dunk, a powerhouse of an ad that’s going to go a long way toward hurting Trump:

The disability activists that Perry interviewed, all disabled themselves, weren’t so impressed with “Grace”:

Dominick Evans, Filmmaker: “It feels really exploitative to use this issue and speak about a disabled child and about disability and never include us in the discussion, at all.”

Alice Wong, Founder of the Disability Visibility Project and #CripTheVote: “…infantilization is [the] message that comes across in this ad. Unfortunately, infantilization of disabled adults is pretty commonplace in the media.”

Vilissa Thompson, Founder of Ramp Your Voice: “Disabled children’s images and stories are always used to evoke the sympathy feels among members in society.” She added that the images are almost always of white children.

Perry observes

“No matter how well intentioned campaigns may be, they may take a different approach than activists, even when they are working hard to court those groups. Activists want to move mainstream society to adopt new positions. Campaigns, and ad-makers at political-action groups, want to reach mainstream Americans where they are. Perhaps social change always requires activists to push politicians past their comfort zones.”

I don’t disagree with anything in the article. I added it to the Facebook page and have tweeted it several times precisely because I think it’s spot on. But I wanted to add some observations of my own about about “Grace”, based on watching Obama’s attitude toward disabled people.

I think that Thompson’s argument about disabled children being used to manipulate emotions also applies to disabled adults – and that the Democrats as a group tend to use disabled adults for this purpose more than the Republicans do. I first noticed it at the 2012 Democratic Convention, when Gabby Giffords recited the Pledge of Allegiance.

Of course, it was more than Gabby Giffords’ disabilities that made that moment emotionally charged. It was one of her few public appearances since she was shot in 2011 (presumably an assassination attempt.) But did it help that a person that, through hope, hard work and a belief in herself (which is the way everyone succeeds in America, yes?) had “overcome” the disabilities acquired through a senseless shooting to the point where she could join her peers and colleagues during this history-making event, recited the Pledge of Allegiance, so central to both the history, present and future of everyone was there to do, in front of all of them?

You bet it did.

Making Us “Feel All the Feels”

I wrote at the time, in Gabby Giffords and Emotional Manipulation by the Democrats:

I didn’t see Gabby Giffords recite the Pledge of Allegiance, but the clip that I saw and the activity on my Twitter feed told me that people were certainly affected by it. People talked about her strength, her bravery, and how they were crying.

And even I had to admit that it was nice to see Gabby Giffords if for nothing else to see how far she’d come in her recovery. But I also wrote in my piece:

“If you really want to honour people like Gabby Giffords, who have the will to live as full a life as possible with disability (and there are many of us), put policies in place that allow us to, and that allow the people who care about us to assist us to. For all disabilities.”

I was thinking this way as well the second time I saw Obama trot out a disabled person to ramp up the emotional intensity, during the State of the Union address in 2014. Corey Remsberg was a veteran who’d done 10 tours of duty in Afghanistan – he certainly deserved the recognition that he got during the address, even if the way that Obama told his story reeked of inspiration porn (“Cory Remsburg never gives up, and he does not quit,” said Obama to the crowd of the way Remsburg regained his ability to walk and talk during 16 months in a rehabilitation centre after nearly being killed by a roadside bomb in Kandahar.)  I was even more angered by this display than I was by the one involving Gabby Giffords, because it was stunningly hypocritical. The US (and Canada, for that matter) loves to talk about how it supports its troops and takes care of them when they return from war, but we all know it’s not true – disabled US veterans are at the mercy of a VA system that isn’t even fully computerized, despite Obama identifying that as a priority for his administration, long wait times for services, and an uncertain future at the hands of the country that they put their lives on the line to protect.

It was one of the many reasons that I was disillusioned with that particular State of the Union address.

Oh, “Grace”…Call Me Cynical, But…

So, even hearing this time around from the Democrats that they’re considering disabled people in their campaign strategy, to the point when Hillary Clinton has even developed a plan to address the needs of autistic people and their families, I am skeptical, when I see ads like “Grace”, that they really “get it”. Disabled people are citizens and voters – I’m tired of us being used as props to rally the rest of the voting public. It doesn’t seem like politicians can get it through their heads (although through efforts like #CriptheVote I think that they’re starting to get it and will continue to see more clearly) that we’re a major voting demographic with *a lot* of power.

But we’re going to have to tell them when they don’t get it right.

Refuse to be a prop, American friends. You’re more than that, and people need to know it.

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On an unrelated note, as of June 11 I’ve been blogging for 5 years.

Thanks to all you for sticking this out with me. 🙂

 

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Why I Joined the Boycott Autism Speaks Movement, Part Two

Content Note: Ableism, cure vs treatment, Judge Rotenberg Center, vaccination myths, anti-autism messaging


Boycott Autism Speaks graphic - a square with a double border (outer border in blue, inner in green). The square is two-coloured, blue and green-light grey, with a dividing line running from approx. the 1/3 point in from the right on the top edge to the 1/3 point in from the left on the bottom edge of the square. A "not equal" sign in light blue is centred in the square, with the slash running along the diagonal line. "Boycott" is above the not-equal sign in the same green as the outer border, and "Autism Speaks" in smaller, bold letters, same colour is below it. "#Resist" is in the bottom left corner in green. Keyword: Autism Speaks

Image Description: Boycott Autism Speaks graphic – a square with a double border (outer border in blue, inner in green). The square is two-coloured, blue and green-light grey, with a dividing line running from approx. the 1/3 point in from the right on the top edge to the 1/3 point in from the left on the bottom edge of the square. A “not equal” sign in light blue is centred in the square, with the slash running along the diagonal line. “Boycott” is above the not-equal sign in the same green as the outer border, and “Autism Speaks” in smaller, bold letters, same colour is below it. “#Resist” is in the bottom left corner in green.

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I didn’t get everything out about why I decided to join the Boycott Autism Speaks movement in my first post on the subject. I knew that I wouldn’t, hence the “Part One” when I was writing that post. It’s time to get to Part Two.

Here’s the recap from Part One:

I decided to join the Boycott Autism Speaks Movement (visit boycottautismspeaks.com for more information) because:

Let’s dig a little deeper.

The Judge Rotenberg Centre…Issue

I’m not exactly sure what to make of this because I can’t find information on just how extensive this partnership is. As someone pointed out in comments on Lydia Brown’s article on the affair, it could have been an honest mistake that a display from the Judge Rotenberg Centre showed up on Autism Speak’s Resource Walk at the DC Walk Now for Autism.

But wow. Go with the best-case scenario that they somehow slipped into the roster because someone wasn’t paying enough attention, and Autism Speaks still couldn’t have made a much bigger faux pas.

I’ve written here about how the Judge Rotenberg Center “treats” autistic children, for those not familiar with this controversy.

Emily Willingham also provides a  comprehensive look at  how the shock therapy administered to autistic children and teens at the JRC has been officially been declared torture by the United Nations.

Autism Speaks issued a statement saying that they didn’t support the JRC and the use of these shock treatments. Yet they were billed as a service provider at an Autism Speaks resource fair. It was very upsetting for many families, and as far as I can see there was no apology. I don’t want to support an organization that aligns itself, in any way, with an institution that tortures children. Next.

The Other PSAs

Autism Speaks continued the legacy it started with “Everyday Autism” of painting autism as the worst thing that could happen to a child and the people who love him/her, ever, with three others that, had I seen them right after my child was diagnosed, would have devastated me.

“I Am Autism” tries to end on a positive note, but the positivity is all about, “We will conquer this evil thing called autism that ruins every life it touches”, not about acceptance, education, resources…things that my family and I need to know plan a good life for my child, still precious and loveable and absolutely with a bright future, despite an autism diagnosis.

“Neighbours”, for its positive message on all people being able to access health care, also implies that society is only going to accept people that don’t “act autistic”.

When your informational videos are scaring the crap out of people (or making them angry; read the comments on especially the “Neighbours” video), then you have a messaging problem. But this goes further than simply getting the wrong message across. As I said in my first post on this, Autism Speaks co-founder Suzanne Wright has stated that her goal is to live in a world where autism is “a word for the history books.”

I’m extremely uncomfortable with that idea.

Vaccinations

Speaking of feeling uncomfortable…

I haven’t done all the research that I need to on this (but it doesn’t sound like Autism Speaks has either, frankly) and I’m certainly no expert, but Autism Speaks’ stance on vaccination does not sit well with me:

“It remains possible that, in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlying medical or genetic issue.”

They do encourage vaccination on the same page. But for someone sitting on the fence about getting their child vaccinated because of autism fears (especially after hearing some of what Autism Speaks has to say about how terrible life is for everyone involved with an autistic child), just the acknowledgement of a “possibility” that vaccines might cause autism could carry a lot of weight.

Someone should please correct me if I’m wrong, but I thought that the theory that vaccines cause autism had been thoroughly discredited.

Autism Speaks: Bottom Line

Confession time: While I think that Oprah Winfrey has done some wonderful charity work and I admire her for it, I’ve never really liked her. It’s obvious that she holds a tremendous amount of power to influence how people think, and it’s not always been obvious to me that she uses that power responsibly. Reading blogger Ariane Zurcher’s observation that “What Autism Speaks says and does is often the first thing that parents and people reading about autism hear,” I’m reminded of that idea of not wielding power responsibly: pushing an agenda on people who are scared and looking for answers, not showing them all sides of a story…

And because they’re so big, they’ve had the power to allocate significant resources to keeping the organization going in the direction it has, even though the autism community has been saying for several years now that their needs aren’t being served. But people can always choose to opt out if they don’t like the direction in which an organization is heading. And it looks as if that’s what’s happening with Autism Speaks.

I’m happy to join that movement.