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.


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.


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.

Some Disabled Workers Won’t Be Eligible for American Minimum Wage Hike

minimum wageSorry for another political post, but I’m a little annoyed right now. At President Barack Obama and his promise to raise the minimum wage in the United States.

Don’t get me wrong. I support any sort of initiative that will raise the minimum wage in the US. I’ve been following this issue ever since I learned that the current minimum wage in the US is only $7.25. It’s been over $10.00 in Ontario for years, going up to $11 in June. Heck, student minimum wage in Ontario in 1998 (the last time I worked as a student in Ontario) was $8.

What I don’t support is nonsense about the minimum wage raise not applying to disabled workers that currently earn less than minimum wage – the employees of organizations holding a 14(c) certificate. And apparently, that’s exactly what’s going to happen. The words came right from Joe Biden himself, in a phone call to disability advocates last Wednesday. Read more here

It’s such blatant ableism that it makes me feel ill.

Minimum Wage, Disabled Americans, and the 14(c) Exemption

This ableist action is built on policy that was already ableist. The 14(c) exemption, put in place in the 1930s. It says that “workers with disabilities are excluded from minimum-wage protections if they are employed in certified training programs.” Read more here These are also referred to as sheltered workshop programs, and in the past I’ve gone into why the disability community is deeply divided about them (well, I know where I stand on them, but the community itself is divided).

Goodwill Industries has a 14(c) exemption. It was outed last year for paying disabled workers as low as $0.22 cents an hour, and for engineering their evaluation process so that it was almost impossible for people to get out of jobs that they didn’t want. keeping Regular readers will remember how disgusted that whole business made me.  The story was highly publicized, and people protested Goodwill and did organized boycotts all over the country. No one from the White House has addressed the 14(c) exemption as something that’s keeping Goodwill employees, and employees of other organizations that have the 14(c) exemption, as something that’s contributing to keeping disabled people in this country living in poverty.

Read more about my thoughts on Goodwill here, here, and here.

Recent comments to Ari Ne’eman, head of the Autistic Self-Advocacy Network (ASAN), may explain the administration’s failure to even publicly mention the situation. Ne’eman was recently told by the the White House that the Obama administration doesn’t believe it has the authority to raise the wages of people who work for organizations with a 14(c) exemption. Read More Here

Doesn’t have the authority? It’s my understanding that Obama is going to use Executive Agency to raise minimum wage to $10.10 for everyone else…and yet he doesn’t have the power to step in on a labour issue that’s keeping disabled people trapped in poverty and under the heel of organizations like Goodwill, who can afford to pay all their workers minimum wage but don’t? That doesn’t make one iota of sense to me.  ASAN had a legal analysis done that agrees Read More Here

Not only can I not can’t see how Obama doesn’t have the power to make organizations with the 14(c) exemption raise wages, but because I can’t see, granted the havoc that raising the minimum wage using Executive Agency is going to cause for him in general, politically, how it’s going to make things much worse. The only downside that I can see it for him is that it requires him to come down on a side on this particular disability issue. And by doing that, he risks alienating people and losing votes for the Democrats in the next election.

But I’d suggest that he’s alienated much of the disability community at this point anyway, unless he takes some drastic actions in support of it.

Obama, Meet Me at Camera Three

Obama, you’ve got little to lose and the 420,000 disabled Americans employed in organizations with the 14(c) exemption have got everything to gain. 420,00 may sound like it’s too small a number to matter, but “minimum wage” is called that for a reason because it’s what *all* workers get paid, as a bare minimum.

Not just the non-disabled ones.

Throw the disability community something after nearly two terms in office and get on the ball with this one. Disabled Americans have been waiting long enough for you to do something for them.

UPDATE: On February 13th, the news broke that the Obama administration reversed this decision and declared that workers eligible for the minimum wage increase, disabled or not, would receive it. http://www.usatoday.com/story/news/politics/2014/02/12/obama-disabled-workers-subminimum-wage/5409927/ Thanks, Obama, for doing the right thing.

State of the Union…State of Whose Union?

state of the unionWell. Another State of the Union address came and went this week.

I came to this State of the Union address a little less enthusiastic about Obama than I have been in the past, a sentiment that I think many share these days. I’m disappointed that some of the promises that he ran on the first time around, like closing Guantanomo Bay, haven’t been kept. I’m disillusioned (but not particularly surprised) by the revelations in the past year about the NSA’s activities. Now that I’m seeing what Obamacare looks like…and seeing how different it was from what I thought it was going to be…I’m questioning, asking, “Is this what Americans call universal health care? Damn it, you’re not doing it right!”

Do I still believe wholeheartedly that he and Biden were the lesser of two evils in 2012? I wouldn’t change a thing about how that election turned out, because…well, let’s not get into that right now.

Back to the State of the Union address.

Let’s Get the Big Stuff Out of the Way

While I certainly think it’s appropriate to highlight and show a great deal of appreciation for the service and commitment to country of a young man like Cory Remsberg, who did ten military deployments…damn it, damn it, damn it, I wish that the Democrats would stop using disabled people to emotionally manipulate the audience during speeches! They did it with Gabby Giffords during the Democratic National Convention, and when I saw that Obama was working up it in the State of the Union address the other night, it just annoyed me to no end. Why? Because it’s exploitative and disrespectful. And, in Remsberg’s case, it was amazingly hypocritical, in light of the fact that services for veterans in general in the United States (and in Canada – my country doesn’t get a free pass in this area) are so disgustingly inadequate.

And yes it’s certainly wrong that women still make 77 cents to the male dollar, and that the minimum wage is so low. In light of the attention that President Obama gave these issues in the State of the Union address, I really wish that he’d once and for all close the damn legislative loophole that’s allowing organizations like Goodwill to pay disabled workers as low as $0.22 an hour for work for which non-disabled people would receive minimum wage. All this talk of being for the American worker sounds very disingenuous otherwise. Obama be striving to make labour conditions better for *all* Americans, not just the non-disabled ones.

Now that I’ve got that out of my system…

Ableism in the State of the Union Address

The truth is, besides the bit about Remsberg, and some promises about how Wounded Warriors was going to be reformed and the backlog on veterans’ disability claims addressed (with no details about how he plans to do either of these things), there was nothing in the State of Union address for disabled people – and I’m fairly convinced it’s because no one really thought of them while the State of the Union address was being written.  From the very basic language to the grand vision, the State of the Union address painted a picture of America where disabled people only occupy a very small corner in veteran’s hospitals.

Which just a bit more acknowledgement of disabled people than in Obama’s past State of the Union addresses. Business as usual, otherwise: Lots of grand ideas and great-sounding plans – for people who are non-disabled, whose children are non-disabled, who are disabled but can hold down jobs and support themselves.  I sometimes wonder just how many politicians truly realize that disabled people actually (gasp!) experience discrimination on the basis of disability. You might wonder if Obama has truly internalized the idea, given that the two times in the State of the Union Address that he listed the personal characteristics on which he believed that people shouldn’t be allowed to discriminate against others (religion, sex, race, sexual orientation, etc.), he didn’t mention disability, or something akin to it…something that acknowledges a belief that ableism is wrong.

I thought about situations under which I’d be willing to let this go:

  • If he was speaking off the top of his head, and it was simply an omission.
  • If there wasn’t a teleprompter
  • If disabled people weren’t the world’s largest minority Read more here

But maybe not even in those circumstances, because the omission, by the most powerful man in the world, of disabled people as group that experiences discrimination, sends a message. It tells the world that ableism isn’t a big deal and that both specific disability-related issues facing America as a country (such as last year’s failure to ratify the United Nations’ Convention on the Rights of Persons with Disabilities and the renewed energy behind getting it ratified) and the larger issues facing it as a member of the world community aren’t important.

If he doesn’t think ableism is a big deal, why should anyone else? Even if his message wasn’t deliberate, it was powerful. It made me wonder (as it has when listening to all of his State of the Union addresses) how, when he explains his grand visions, disabled people fit into them…or if they’re going to have a place at all.

Like I Said, Business as Usual

Which is to say, this State of the Union address left me with the same questions that basically the last one did…which shouldn’t shock me, according to Politco, where I read today that Obama’s State of the Union addresses are even more formulaic that I remember them being (Read more here), but still…:

  • Will high-quality pre-kindergarten programming, “real-world education and hands-on training” in high school, and increased access to post-secondary education really be available to “every child”? Will supports be available in the schools so that students with every variety of disability, from the moment that they start school, will not only learn that they have more options upon high school graduation than going to work in a sheltered workshop, but that they get the education that they need to pursue those options?
  • How will these job training programs that Joe Biden is going to put in place address the entire problem of high unemployment (much higher than than for non-disabled people) rates for disabled people? If the experience of “every” job seeker in America should be that they should easily be able to find work, then not only do a whole lot of disabled people who have been out of work a long time need job training that accommodates a variety of learning styles, physical needs, and challenges arising from social barriers (cost, accessibility, transportation, etc.), then employers need training as well. Disabled workers are still a largely untapped labour market of immensely qualified people. Outdated fears about accommodations and stigma about disability make employers wary of them. What’s the administration’s plan to address these challenges?
  • What will Obama’s administration do to address the challenges that disabled people have with the voting process? Will they be included for consideration when the process is re-engineered so that no one has to wait for more than half an hour to vote? Does this mean that the President is willing to take a good, hard look at accessibility of voting stations?  Transportation, especially in rural areas? Accommodations for people with low or no vision, or who can’t read, or who have learning or intellectual disabilities, or who don’t have use of their arms and can’t write, or whose wheelchair can’t fit into a voting booth…do I need to go on?

State of the Union…State of Whose Union?

From a policy standpoint, I really don’t see what about “Americans have disabilities” is so hard to get. 57.6 million Americans had in disabilities in 2010 (Read more here). 2010. Four years ago. The population is aging, so no one should be planning for the number to decrease. If governments (and I say governments because Canada sweeps disabled people and their concerns under the rug as well) aren’t aware of the implications of not planning for the needs of disabled citizens and of not acknowledging them as a group, (if nothing else because disabled people and the people involved with them are a good chunk of votes), then it seems to me that a couple of things could be happening:

  • They’re misinformed about disability issues.
  • Disability issues aren’t hitting the radar.
  • Disability issues are hitting the radar, and they just aren’t important enough to the politicians that that they’ll get the facts, or make them part of the platform if they do have them.

I’m not sure what’s happening with Obama, given what he said in this State of the Union address. But I’m not even American, and I’m kind of tired of waiting to hear how his America includes disabled people.

How about you?

Before I go…thank you to the group of kick-ass disability advocates who put up with the the crazy Canadian crashing their #SOTU4PWD (State of the Union for People with Disabilities) live-tweet party. I only wish I’d gotten there right at the beginning of the event, because I *loved* the insights, and it was great to see at least some of the State of the Union address with such an amazing group of people.