Thoughts on Disney’s Disability Access Service Card (Or, Why it Sometimes Sucks to Be Disabled)

disability service access cardIn the last post that I wrote about Disney’s new Disability Access Service Card, I said that it was receiving, at best, mixed reviews. Well, the chickens have come home to roost on that. Sixteen families of children and youth with developmental disabilities (including autistic children) are now suing Disney on the grounds that the new Disability Access Service Card regulations aren’t ADA-compliant.  And I don’t think that there’s really much to say about this except that sometimes, as positive as I try to stay about my situation, it really does suck to be disabled. I think it must especially suck for children.

The Disability Access Service Card: The Complaints

I thought hard about what I wanted to say about this. It’s a tough situation.

The Disability Access Service Card’s older equivalent allowed families with members who were unable, due to disability, to handle waiting in line the option to move to the front of the ride lines. It was being abused, however, by families that hired a disabled person to accompany them to Disney parks in order to avoid waiting in line. The current Disability Access Service Card lets families schedule a time to go on a ride, depending on current wait times, so that they don’t have to physically stand in line. However, they can only have a return time to one ride scheduled at a time, and the disabled person must be with the group in order for everyone to ride.

For autistic children especially, the Disability Access Service Card has been causing more issues than it solves. Disabilityscoop.com outlines why some of the parents involved in the lawsuit have found the Disability Access Service Card policies especially problematic:

In the suit, a mother known as M.B. alleges that she waited in line for an hour and a half to receive a Disability Access Service Card for her 6-year-old with autism who is referred to in court documents as A.B. Even though she offered park officials medical documentation about her child’s inability to tolerate waits, the mother says she was given no choice but to schedule a return time at “It’s a Small World” which A.B. wanted to ride repeatedly. After riding twice, A.B. faced another hour-and-fifteen-minute wait and entered a “full-fledged meltdown,” the lawsuit alleges.

In a separate case, the suit indicates that a mother known as L.C. tried to take her 7-year-old with autism, referred to as J.C., to Disney World several times since the new policy took effect. L.C. said her child has had multiple meltdowns after learning of wait times to ride “Peter Pan” and “Winnie the Pooh,” with J.C. falling to the ground or jumping up and down with arms spinning around. As a result, L.C. is no longer taking her child to Disney parks and does not plan to renew the family’s annual passes.

As always, the comments on the article on telling. Some parents whole-heartedly support the lawsuit, and tell their own stories of how Disney’s Disability Access Service Card is doing exactly the opposite of what it’s supposed to be doing. Others talk about how Disney couldn’t do enough to accommodate the needs of their disabled child. And others talk about how parents who expect that their disabled children should always be able to go to the front of the line don’t want equality, but special treatment.

I addressed the last concern when I last blogged about the Disability Access Service Card, when I talked about how equality doesn’t always mean that everyone gets treated the same way…it means that everyone gets equal access to what they need to be successful. And if “success” is a fun day for a disabled child with a minimum amount of stress for them, and decreased time in line is something that’s needed for that to happen, then there should be a way to facilitate that. I think that parents were hoping that the Disability Access Service Card was still going to allow them to avoid problematic line-ups.

I do see where other parents are coming from as well, though. The list of developmental disabilities that could potentially cause difficult-to-manage behaviours that might be exacerbated by the limitations of the Disability Access Service Card is quite long, depending on how a disability manifests in a given child at a given time: Attention Deficit Disorder, Fetal Alcohol Syndrome, Oppositional Defiant Disorder (lots of “disorder” talk there, please excuse me; diagnostic language is bad for this), plus any number of mental conditions, none of which are a child’s fault. But when there are a whole whack of kids who (legitimately) *always* get to go to the front of the line, there are also always a whole whack of kids who are also going to always have to wait longer.

Is that the disabled kids’ problem? No. Their needs are not their fault. But it’s not also particularly fair to non-disabled kids and their families, either.

There really is no easy way to make things fair for both groups, and I think that the Disability Access Service Card does represent efforts on Disney’s part to level the playing field for everyone. What they’ve come up with one this first shot at the Disability Access Service Card probably isn’t the best answer.

But this *is* just the first shot.

The Disability Access Service Card: Things to Consider

Which I know means very little if you’re in the group that’s actually being affected by all this. The unfortunate thing for these disabled children, who deserve a wonderful day at Disney World or Disneyland just as much as any other child, is that we’re still at a period in history where we’re learning about disability rights, accessibility, and accommodation by seeing what hasn’t worked in the very recent past and improving on it using a body of knowledge that’s still very much in development. It wasn’t so long ago that society thought the “right thing” to do with disabled children was to tell their parents, “Put them in an institution and forget about them”, and in some respects we still haven’t come very far. We learn as we go along, and while it would be awesome to be able to perceive an issue, snap our fingers, and say, “Hey, taken care of! Attitudes altered, policies changed, loose ends tucked up, all neat and tidy!”, it doesn’t work that way.

It takes time, and dialogue, and a step forward and two steps back. And sometimes an infinite amount of patience. And I believe that it really does take the assumption of good intentions. Maybe not every employee at every Disney park is perfectly modelling attitudes of inclusiveness and accommodation (and when discrimination happens, people need to report it, and Disney needs to build trust with its customer base by dealing with it in a timely and appropriate manner), but I don’t believe, as these lawsuits allege, that there’s a plot afoot within the Disney corporation to purge the parks of autistic children. If I did, then I’d be calling for a very different discussion, and probably paying very little attention to this Disability Access Service Card.

(And if disabled children were being abused or dying at the hands of Disney in their parks, then everything that I said about having to live with the fact that this process taking time and patience and the assumption of good intentions goes out the window. But that’s not what’s happening here, thank God.)

I concede that it’s possible that Disney is being run by heinously ableist people. I’ve never seen any conclusive evidence of that, and don’t figure that the public ever would, should it be the case – the people that run Disney are simply too business-savvy to let the corporation be seen in that light.  Disney doesn’t like negative press, including people who talk about being discriminated on the basis on disability in the theme parks. I think that Disney will refine the Disability Access Service Card as it learns what does and doesn’t work, despite its stance on the lawsuit that it’s already fully complying with ADA regulations. Politicians may not be aware that disabled people want to travel, and will return to places that accommodate their needs and make them feel welcome, but you can bet that the head people at Disney are aware of it. They can’t afford not to be.

Again, cold comfort to the people who have to put up with an organization with lots of money and resources just “learning as it goes”.

The Disability Access Card: Sometimes Disability Sucks

I like to stay positive, and I don’t say things like, “Disability sucks” very often. But yeah, it does suck that disabled children leave Disney World and Disney Land having had a bad experience, just because true inclusion is a goal that even huge companies with lots of money still struggle to reach…or often even understand. That’d be a hard thing for any kid to understand. How does a parent explain to a child, “They couldn’t handle your needs very well, so we may go somewhere else for vacation from now on, or maybe we’ll go when you’re a bit older…” when Disney World is the only place that child wants to go?

I’m not a parent who’s been hoping, hoping, hoping that Disney World was going to be the place where I could have a family vacation, complete with my disabled child. I could see how it would be…very difficult.

The bright side is that, as far as I know, a whole lot of people have survived without ever visiting  a Disney theme park, or only going once. I only went once. It was cold, colder than the Toronto climate that we’d left. My parents hated Florida and vowed never to go back. My sister and I turned out just fine. (Well, arguably fine. Mostly fine, I think).

An easy decision for my parents…maybe not so easy for these parents that are suing. Again, I don’t presume to know.

There are just lots of things to consider here before jumping to lawsuit territory, I believe. The money spent on a trial could buy a lot of kick-ass vacation in places that are very committed to accessibility and to making sure that guests of all ages can participate in all activities.  (Check out the website for Hasquila Amazon Lodge…jungle fun in the only accessible lodge in Ecuador!)

As usual, there are no easy answers. I don’t know why I expected that there would be.

 

 

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Thoughts About Disability Awareness Days

disability awareness daysSo, a disability awareness day came and went this week: World Autism Awareness Day, on April 2.  My Facebook feed was lit up with pictures of city landmarks bathed in blue light, and autism-themed memes, and pictures of friends’ autistic loved ones.

I didn’t write anything this year, or post anything on the Facebook page, or even tweet anything, as I have in past years. The first year I had this blog up, I think I wrote a post for *every* disability awareness day…or week…or month. On Autism Awareness Day this year, I had a terrible headache and was just trying to get through the day, or I probably would have at least put something on my Twitter feed and the Facebook page.

But I don’t think I would have written a blog post.

Call me cynical, but disability awareness days in general are starting to leave me a little cold.

Disability Awareness Days Preach to the Converted

It’s not that I don’t think that disability awareness days in general are a good idea, and it’s always effective, particularly on social media, to see large numbers of people posting in support of something. But I think that people have become remarkably good at tuning out what isn’t personally relevant to them (even if it’s all over social media campaigns or right in front of their face, like the CN Tower being lit blue) and if autism is something personally relevant to them, chances are that they’ve already investigated it.

With one exception, which I’ll talk about in a moment, the people that posted, and liked, the autism awareness messages on my Facebook feed were people with autistic loved ones. I’ve seen the same thing happen for Down Syndrome Awareness Day, a variety of stroke awareness days, and other disability awareness days. It all feels very within-community and insular.

Disability Awareness Days Are One Day a Year

In addition, the “like”, “share”, and “retweet” ease of social media, combined with the one-day-a-year focus of disability awareness days encourages a passive, shallow activism in those that want to support a cause, but don’t really want to *do* anything.

I know very few of these people, by the way. The disability activists that I know and admire are utilizing social media to augment and draw attention to activist action in the offline world that frequently leaves me amazed. Their efforts make my own look utterly insignificant. I’d call them out by name, but they’d be embarrassed.

I’m talking about people that “like” something that goes by on their Facebook feed because it makes them look like they’re a socially responsible person, and then don’t give another thought. I used to be one of them about international news when I was in university. Someone would ask me, “Isn’t it terrible what’s happening in…?” and, wanting to appear socially aware and worldly, I’d emphatically agree, having no idea what they were talking about.

I wonder now if those people were actually onto me, and thought, “So what are you going to do about it?”, the way I think sometimes when I see a lot of likes and comments on a disability awareness day post. I think it’s a question that we all need to ask ourselves, as disability advocates, to keep ourselves honest.

When a disability awareness day is over, what are we going to do about it? Forget about it for another year? Or work to keep awareness up all year and positive change happening?

I’m not saying that everyone who supports a disability awareness day has to become a warrior for that cause. The exception on my Facebook feed that I mentioned earlier, which I really liked, was a picture that a friend had shared of two autistic young people in her church (presumably with their permission). She simply said that she wanted to show support on Autism Awareness Day for two young autistic people that she was really enjoying getting to know.

That simple, positive message, that autistic people contribute to relationships, is a very powerful disability awareness day message.

Speaking of messaging…

The good thing about disability awareness days is that they’re a chance to send a powerful, concentrated message to society about disabilities. And the bad thing about disability awareness days is that they’re a chance to send a powerful, concentrated message to society about disabilities. If the message is slanted toward the medical model’s stance that disability is biological and and a “sickness” that needs curing, that has implications for what the disability rights movement is trying to achieve. It’s so easy to set ourselves back, practically without realizing it.

And if people dispute that medical model rhetoric is still out there, or that we need to examine whether the language of disability awareness days contributes (as we should be examining whether the rhetoric of all information sources about disabilities contributes to negative ideas about disability and how disabled people are treated), consider the following:

  • Concerns about low quality of life sometimes prompt doctors to counsel mothers to abort a fetus with Down Syndrome. Also consider the case of AWA, a man with Down Syndrome given a DNR order in a UK hospital that neither he or his family even knew about, let alone consented to.
  • The story of Amelia Rivera, initially denied an organ transplant because of intellectual disability. See also the story of Paul Korby.
  • The cure-slanted rhetoric of organizations such as Autism Speaks. See “I Will Not Light It Up Blue” by Michelle Sutton for a commentary on this as it relates to Autism Awareness Day.

Words are powerful. We need to remember this. We need to make sure that we’re getting the message across that we want to on disability awareness days.

Do I believe That We Need to Do Away with Disability Awareness Days?

No, not necessarily.

Not at this moment, anyway.

I don’t think that, as a tool for engagement with the wider the community, they’re all that effective, but that they can be one part of a strategy for engagement with the wider community to raise awareness of a given disability.  We’re not at that point where people are so familiar with disabilities and the idea that disabled people have more in common with non-disabled people than they do ways in which they differ that we can do away with days that remind people of that…but maybe we need to ask ourselves whether disability awareness days are contributing constructively to getting that message across and, if they’re not, how they better do that.

But I think the goal should be to not have a need for them. It’d be nice to live in a world where we all just recognized that people are different and have different needs, and not have to pathologize that to guide interactions (as in, “He has autism, so I will interact with him this way…”)

Idealistic, yes. But you have to have a dream. :)

World Autism Day kicks off Autism Awareness Month in many countries. What are your thoughts on disability awareness days? Months? Days versus months?

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Vaccination Safety and Autism: An Irritating Debate

vaccination safetyMeasles outbreaks in both Canada and the United States are bringing the debate about vaccination safety and autism out in force again. And, as I often do when I see a Facebook debate among my friends on vaccination safety and the decision not to vaccinate children, particularly when it involves fears about autism, I jumped right into the one that I came across the other night.

The vaccination safety debate just irritates me. Not just because, as the The Daily Beast said so succinctly the other day, “The original study that started us down this insane path by linking the MMR vaccine to autism has been retracted outright“, but because of what it says about where we are in how we view autism even if there was a link.

Let me be clear before I proceed along this line of thinking that I don’t believe that there’s any evidence currently out there that’s strong enough to substantiate the claim that there’s a vaccination safety issue with respect to autism. But, as a hypothetical, even if there was a link, and say, 1 in 1000 vaccinated children ended up being diagnosed with autism spectrum disorder, what’s worse? Taking the risk that your children might contract one of the diseases that are making a comeback after being almost eradicated because fears of fears about autism and vaccination safety (mumps, whooping cough, and the highly contagious measles), and that can potentially have serious health complications, or taking the risk that your child might develop autism?

When I hear someone say, “I won’t vaccinate my child because of autism,” I think, “Is the idea that your child might develop autism *that* scary?”

There seem a be a large group of parents out there who are scared to death of having an autistic child. That’s puzzling and sad to me. And irritating.

The Vaccination Safety Debate: The Disability Issues

I don’t think that when people say, “I’m not going to vaccinate my child because I’ve heard that vaccinations cause autism” that they’re picturing autistic people like internationally known scientist Temple Grandin, Pulitzer Prize winner Tim Page, jazz prodigy Matt Savage, or actor Dan Ackroyd. Or figures suspected to be autistic that changed the course of history with their contributions to the world: Mozart, Einstein, and Andy Warhol.

I doubt that they’re thinking of how (shocker!) an autistic person could change the world.

I get the sense that they’re thinking of a highly stereotyped view of an autistic child: not capable of communicating verbally, unresponsive, continually melting down with no way to prevent it or address it once it’s started to happen, and needing constant care. While there are certainly some autistic children whose disability does manifest in this way, it’s not by any means what every autistic person experiences. As was said in the vaccination safety debate in which I was involved the other night, and as I’ve heard said many, many times before (and said myself): If you’ve met one autistic person, well, you’ve met one autistic person.

But society still tends to make an extremely problematic (and irritating) assumption that there are few prospects for a satisfying life, or a life that contributes anything to society, for any disabled person that needs a high level of support. And that’s simply not true. Judith Snow fundamentally changed how disabled Canadians receive support (and continues to do so) from her wheelchair, and Martyn Sibley is one of the most prolific disability advocates that I know. And so many more! I need to write a blog post just on this subject.

As for not being able to communicate verbally using words, we only need to look at Helen Keller to see that this is a barrier gotten around, or look to the more recent advocacy work of autism advocates Henry Frost and Amy Sequenzia. Henry uses augmentative and alternative communication (AAC)  methods to communicate, and Amy communicates through typing. Communication tools and techniques for autistic people have come a long way, and Henry and Amy (among others) use them to speak compellingly and eloquently about their experience of being autistic and the importance of respect for all people.

Vaccination Safety And The Culture of Fear Around Autism

Related to the above point, the idea that having an autistic child in particular would be catastrophic, both for the child and for the the people that love the child, comes from the way that society has been encouraged to view autism. It’s part of why I don’t support organizations (like Autism Speaks) that paint having an autistic child as something that will devastate a family. See here and here.

Along this line, analyze the language used in this article about anti-vaccination activist Jenny McCarthy  – autism diagnosis as “tragedy”, speaking about how children “slip away” to autism, as if they’ve died. Rich Lowry, understand that in your own way you’re contributing to what keeps parents clinging to this vaccination safety nonsense – their fear – and that irritates me, too, but I’ll give you a bit of leeway because your points about why childhood vaccinations are so important are spot on.

These are dangerous illnesses, and the victims of an outbreak are often infants too small to have yet received vaccinations. Jenny McCarthy styles herself a “mother warrior.” If so, the kids sickened in the fallout from reduced vaccinations are the victims of friendly fire. Nothing good can come from undoing one of the miracles of medical progress.

Yes, Rick. I think he’s irritated about this vaccination safety debate too!

Some children can’t be vaccinated for legitimate reasons. We rely on herd immunity to keep them safe. When large numbers of people don’t vaccinate, herd immunity becomes less effective. Not vaccinating a child puts more people in danger than that child.

A Focus on Vaccination Safety Because We All Want Answers

Of course we all want to know what’s causing autism and why the rates of autism diagnosis continue to rise. Could it be as simple as (as a participant in the debate suggested the other night) that we’re continually getting better at recognizing and diagnosing autism, when in the past it’s been called other things? Or because the definition of autism has been somewhat fluid and continues to be so, with the most recent changes in the DSM-V?

I’m not sure that accounts for all of it, but I think it must be some of it.

I just wish that we, as a society, would get it through our collective heads that:

1) Disability isn’t the end of the world, even though we’ve been taught it is

2) Autism (by all definitions, for as long as I’ve been in this field) is a spectrum disorder, not something that looks the same in everybody.

3) There’s no proof that vaccines cause autism.

Until then…see you in the next Facebook debate about vaccination safety. I can’t seem to stay quiet when I see one.

Image credit: arsgera / 123RF Stock Photo

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Christopher McFadden: Why The Update Doesn’t Change Much for Me

christopher mcfaddenWow it’s been a long time since one of my posts has gotten the attention that the one about Christopher McFadden has. I felt like it was important to write the follow-up quickly.

And I feel like it’s important to explain why I posted what I did even though I knew (just barely) that Christopher McFadden had recused himself. I’m not the mother of a disabled child, but when I was working in social services, I got very attached to the people I supported. I’m still in touch with many of them. The friendship that gave me the passion that I have for this work spans over half my life. And I’ve always been very lucky that when I’ve needed to call on the legal system in my work with disabled people, almost all the people involved have been compassionate and very aware of the issues involved with working with that demographic.

But I’ve heard awful stories, sometimes perpetrated by people who are sure that they’re doing the right thing. As far as I’m concerned, this was one of them. I wanted to show that as family members, friends, caregivers, service providers, we have to…not live in fear, because there are plenty of good people out there.  But we have to be constantly vigilant as well, because we can’t always trust that people who should be protecting the vulnerable people in our lives are actually going to do it. That balance between being vigilant and living in fear is difficult to strike, but we can’t afford to let that guard down.

Anyway. On to the latest update about Christopher McFadden.

My Thoughts on Christopher McFadden Recusing Himself

According to this article, Christopher McFadden recused himself from the new trial he’d ordered for William Jeffrey Dumas, convicted in 2012 of raping a 24-year-old woman with Down Syndrome three times within a twelve-hour period.

Up until now the media has mainly focused on Christopher McFadden’s concerns that the woman (I’ve been calling her Jane) did not “act like a victim” and Dumas did not “act like a perpetrator”,  a stance for which he (rightfully) received criticism. This article elaborates on some of his other concerns:

  • The State’s overemphasis of the importance of the physical evidence (Dumas’ semen on Jane’s bedsheets, the fact that Jane’s injuries suggested forcible intercourse): “‘The physician who testified,’ McFadden wrote, “did testify that her findings were consistent with forcible rape, but she did not testify that her findings were proof of forcible rape.’” Read more here
  • Inconsistencies in the timeline of events that Jane reported.

Christopher McFadden does appear to be acting in what he believes is a responsible manner. Judges can act as a “thirteenth juror” when they feel it’s necessary, and intervene in the matter in which he has.  Read more here. I don’t know enough about the law to comment on whether he’s got a legal leg to stand on with his first point, and I didn’t hear Jane’s testimony. Perhaps there were inconsistencies in the timeline as she reported that he didn’t feel he could ignore. I do think, as I discussed in my last post, I think he really needs to consider that she’s a person with an intellectual disability speaking about a highly traumatic event in a very stressful environment.  How much bearing these inconsistencies could actually have on the trial’s outcome needs to be considered in light of these facts.

In the end, he did what I preferred he’d do, since he seems to really believe that a new trial is necessary. He did what he felt he had to, and then got out of the way.  And if I believed that he’d done it out of concern for Jane, and not because prosecutor Scott Ballard had criticized him or because he was concerned that people were trying to “judge shop”, I could grudgingly respect him for sticking to his principles. But, from what’s been reported about his ruling, there’s little concern the fact that his ruling is largely built on rape culture tropes and ableism.

And that I can’t respect, Judge Christopher McFadden. I expect better from the American legal system.

 

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Christopher McFadden: What Do We Do When a Judge is Wrong?

christopher mcfaddenThere’s an update on this story that became available to me just as I was about to post this: Christopher McFadden recused himself from the case late Friday afternoon. The story is here, and I will comment on it this week.

I still wanted to post this. After reading the update, nothing about what I believe about this story has changed, and this one really upset me.

A Facebook friend brought this to my attention on Friday. Let’s all welcome Judge Christopher McFadden of Georgia to the blog. I doubt that this will be “one time only” appearance, as I plan on following this story.

The controversy rests on the 2012 trial of Jeffrey Dumas. Dumas was tried for raping a woman with Down Syndrome multiple times in 2010. She was 24 at the time, staying with family friends while her parents were out of town. Dumas visited the friends’ residence and, according to the woman’s testimony and to physical evidence, raped her three times in the twelve hours that he spent there. He was convicted by a jury and is currently serving 25 years. Christopher McFadden presided over the trial.

And now he has reversed the jury’s verdict and called for a new trial.

Wow.

Just a note before I get into this that for the sake of simplicity, I’m only going to talk about women and rape in this post. But I’ve not forgotten (and no one should ever forget) that men get raped, too. The statistic that I found in my go-to essay on rape culture (I’ll talk about that later) said that the number is 1 in 33, and that was in 2009.

Let’s unpack this. The woman’s name is not mentioned in the media. I’ll call her Jane, instead of “the woman”.

Christopher McFadden’s Concerns

Christopher McFadden apparently has some concerns with discrepancies in some witness testimony, the specifics of which I haven’t been able to find in the media. If he’s so concerned by these discrepancies that he feels that they affected the outcome of the original trial, then it’s my understanding that overturning the jury’s decision is a step, albeit one almost never taken by trial judges, that’s within his judicial power to take.

The media is giving those concerns only a passing mention, however, if mentioning them at all. And, in my opinion, he’d better be pretty damn sure that they’re worth giving a convicted rapist a new trial over.

Because Christopher McFadden hasn’t got a leg to stand on legally about anything else that concerns him about this trial, and needs to be called out properly on it.

You see, Christopher McFadden also believes that a new trial is necessary because Jane didn’t “act like a victim” and Dumas didn’t “like someone who had recently perpetrated a series of violent crimes”.

Welcome to living in rape culture in America, folks.

A Lesson in Rape Culture for Christopher McFadden

When I’m talking with people about rape culture, I refer them to Melissa McEwan’s excellent essay on the topic. For anyone who wants to understand how truly scarily pervasive rape culture is, how it thoroughly saturates our culture and keeps both women and men at risk, McEwan’s website, shakesville.com, is an excellent resource.

Christopher McFadden wonders if what happened to Jane is truly rape, apparently, given that her testimony that the rapes happened over a twelve hour period and she waited until the next day to report them. He posits that she had plenty of plenty of time and opportunity to report what was happening her caregivers and to ask for help before she did so.

Let’s let Melissa take this one:

“Rape culture is the pervasive narrative that there is a “typical” way to behave after being raped, instead of the acknowledgment that responses to rape are as varied as its victims, that, immediately following a rape, some women go into shock; some are lucid; some are angry; some are ashamed; some are stoic; some are erratic; some want to report it; some don’t; some will act out; some will crawl inside themselves; some will have healthy sex lives; some never will again.”

The fact that every woman reacts differently to rape isn’t ground-breaking news. Anyone who works with rape victims will tell you that. But this is the power of rape culture.

Or ignorance from a highly-educated individual of one of the most very basic elements of personal aftermath after a rape.

Or both.

In any case, it’s first-order victim-blaming, and a judge should know better.

And by the way, what *does* a man who has just raped woman 3 times behave like? What is he *supposed* to behave like? Why does this matter, when the jury found that the physical evidence supported that Dumas raped Jane?

Fayette County State Attorney Scott Ballard, who prosecuted this case, reacted to Christopher McFadden’s ruling with “disgust”.  After reading Christopher McFadden’s ruling,  the District’s Attorney’s office filed a motion asking him to recuse himself from the case, but he denied the motion.  The motion is being appealed (to the same appeals court that McFadden sits on.)

Obviously Christopher McFadden’s attitudes about rape would be problematic (to say the least!) regardless of whether the woman was disabled. But the fact that this woman is makes all this an issue of ableism as well, as Jane has Down Syndrome.

The Ableism Issues

If Christopher McFadden feels that discrepancies in witness testimony actually are significant enough to call for a new trial, that’s one thing. But this “she didn’t act like a victim” nonsense is especially unfair for a woman with an intellectual disability who, depending on her level of understanding, education and experience, may have a very limited understanding of how people “act” after consensual sex, let alone rape. There’s still a perception out there that disabled people, especially when the disability is intellectual, aren’t sexual beings, and don’t need education about sexuality, sexual relationships, and sexual safety.

I have no idea about Jane’s particular situation, of course. But, unless these issues were explored in the original trial, Christopher McFadden is assuming that she would even be clear after the initial rape that what had happened to her was wrong or why. After all, even some women who aren’t facing the challenges inherent in having an intellectual disability sometimes aren’t sure after an assault that what’s happened to them was rape.

These are factors that need to be considered by the entire support team helping a woman with an intellectual disability work her way through the issues involved with a rape, including the judge if the case goes to trial.

The evidence doesn’t seem to point to Christopher McFadden having awareness of these issues. I could be wrong, but I’m willing to bet that I’m not.

I’m also asking myself if this idea of “she didn’t act like a victim” isn’t somehow tied in to assumptions about people with an intellectual disability. I don’t think it’s an unfair question, although I’m sure we’ll never know the answer.

But ultimately it doesn’t matter whether Jane is disabled or not, does it?

Meet Me at Camera Three, Judge Christopher McFadden

I’m just sick about your ruling.

Not just because it means that a woman with Down Syndrome will have to go through a trial again, when the man charged with raping her was found guilty, when she she thought that he would stay behind bars for 25 years.

Because a *woman* will have to will to go through a trial again, when the man charged with  raping her was found guilty, when she thought that he would stay behind bars for 25 years.

Some of the articles about this don’t even mention that you had concerns about testimony. All of them mention that this is happening because you didn’t think that Jane acted enough like a victim. This not only demonstrates ignorance on a basic level of how women react to being raped, it’s an affront to rape victims everywhere. You ignorance is revictimizing this woman, and further proves that in a rape trial, the victim is just as much on trial as the rapist. Her sexual history is used against her. The way she dresses is used against her. And now, the way she acts after the rape is used against her.

And God help her if her rapist doesn’t “act” like a rapist.

If you are thoroughly convinced that witness testimony had discrepancies that could have affected the outcome of the original trial (not that I’m buying that), call for the new trial on that basis.

And then recuse yourself! How does this woman have a ghost of a chance in this new trial if you preside?

And yet, when she was told that the trial was going to be reopened, after her tears, she said that she was ready to do this again.

I can’t do much for her, but I can make sure that people know what’s happening, and get as much support as I can behind her.

Be a responsible judge and a decent human being and don’t force yourself into this young woman’s life again. She’s been violated enough.

This article by Bill Rankin and Steve Visser really helped me to get needed background information and to better understand the legal aspects of what’s happening with this case.

 

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Why I Joined the Boycott Autism Speaks Movement, Part Two

autism speaksI 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:

  • The language in co-founder Suzanne Wright’s 2013 call to action
  • John Elder Robison’s resignation, as one of the very few autistic people actually employed at Autism Speaks
  • The deliberately negative language and fear-mongering around autism in Autism Speaks education materials, especially the Autism Every Day PSA.
  • The low percentage of Autism Speaks’ budget (3% in 2012) that went into support services for autistic people.

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.

For those not familiar with the Judge Rotenberg Centre and how it “treats” autistic children, I’ve written about it here. But this article concisely summarizes 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 in a post about Autism Speaks 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.

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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.

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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.

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Avonte Oquendo’s Funeral Draws 200 Mourners

avonteMourners gathered in New York on January 25 for the public funeral service for Avonte Oquendo. The 14-year-old autistic boy’s remains were found in Queen’s by the East River this month. He’d been missing since October 2013.

The search for Avonte has been long and intensive, involving 50 members of the NYPD at one point and a detective task force, sewer sweeps conducted by the Department of Environmental Protection, daily checks every subway station in New York by the Metropolitan Transit Authority, and the efforts of total strangers who just wanted to help search. Read more here 

Something about the story moved them. Likely it was the idea of an autistic boy being out on his own in a city in which a more “average” fourteen-year-old would have been very vulnerable, and one with disabilities particularly so. Estimates of Avonte’s level of functioning, for what they’re worth, put him at the level of 8 or 9 years old, and he didn’t communicate using spoken language. You would like to think that someone who came across him would take him to a police station or hospital immediately, but we don’t live in that perfect world, do we?

But if the Riverview School (also known as Center Boulevard School), a school for young people with disabilities, had been more on the ball, he wouldn’t have been out there the begin with. I started my research for this blog entry with this CNN article, and had so many “They let what happen?” moments, based on my experience in special education that I wrote nearly 1000 words based on the couple of paragraphs about the school in that article alone. But when I accidentally closed a browser window and had to go searching for an article again, I found a much more detailed accounting of the school’s actions in response to Avonte’s disappearance, with details from the Department of Education’s report into the incident.

It was much worse than I thought.

The Department of Education Report

Here’s the timeline on Avonte’s disappearance on October 4:

  • Avonte slipped away from in class while they were walking to the computer lab. The article doesn’t say how large the class was, but three adults were supervising.
  • Security cameras show that Avonte reached the first floor of the building at 12:37. He walked past the security desk twice and left through a door that had been left ajar. Four minutes later, the school safety officer shut the door.
  • At 12:41, Avonte’s teachers noticed he was missing (according to CNN, it took them “several minutes” to notice that he was gone), but they didn’t notify the assistant principal until  12:56.
  • The assistant-principal asked the safety officer  to do a perimeter search of the school. The safety officer said that she did not see Avonte leave, and that she’d seen him “run up the stairs”.
  • The assistant-principal asked for a soft lockdown of the school, but was denied, as the principal believed it would be too much of a disturbance to another students.
  • Almost an hour after Avonte disappeared, the police were called.
  • At 2 pm the school was put into full lockdown.
  • At approximately 2:45 the administrators finally got access to the cameras. They didn’t have the passwords before then.

Read more here

There’s not much to say here about what went wrong and what needs to be done, but I will say a couple of things.

  • Riverview School knew that Avonte had a tendency to wander. Knowing that, staff should have locked the outside doors, had people searching the grounds, and put a “heads up” call in to the police the moment that teachers realized that Avonte was missing.
  • If the safety guard was the one that worked the main security desk every day, she should have known what students would usually be in area alone. Even if she didn’t know Avonte that might wander if unsupervised, seeing him walk past the desk twice should have made her wonder if something was off, and want to investigate further.
  • That door shouldn’t have been ajar. Not only can students get out, you can’t predict who will come in – unacceptable in any school right now.

What else can be said about this? We send our children to school each day putting faith in the staff, the Board, and their policies and procedures to keep them safe. The education system must be very vigilant about its policies and procedures, its staff training, and its level of responsiveness, to make sure that it’s up to the challenge, particularly when students who are especially vulnerable due to any reason are involved.

I’m not suggesting for a minute that the staff at Riverview School didn’t care about Avonte Oquendo. But clearly there are issues that need to be addressed, perhaps across the entire Board, considering that a 4-year-old Brooklyn boy left his school alone on January 24 and walked home without a coat on. He’s fine, but parents are pulling him from the school. Read more here

Avonte’s Law

All of this has given Senator Chuck Schumer an idea, and he’ll be proposing the legislation on January 27th. He’d like the federal government to provide $10 000 000 toward a tracking device that autistic children could wear on a wrist or carry in a wallet, or have sewn into their clothing. He’s calling it “Avonte’s Law”.

I’m not sure what I think about this. Right or wrong, putting tracking devices on kids makes me think of getting tracking devices implanted on dogs. And now that the 4-year-old in Brooklyn has shown that he might go for a walk if given a chance, do you think that someone will suggest that he carry a tracking device? What about if he was autistic?

Well, I do know what I think of some of it. For federal legislation, $10 000 000 isn’t a lot of money. Is this supposed to cover a device for every family in America who wants it? Even for that, this just seems like, “We should do something, so let’s toss a small amount of money at it” money.

If they were really concerned, they’d put some real money into this  and put it some supports into place for autistic children – support for families, training for school staff, upgrading for buildings, more money in special education budgets for programming… maybe even education for parents and professionals by autism experts about wandering, to deal with the issue at its roots and give people tools that they can use.

But I’m not the mother of an autistic child. Putting myself in that place, as best as I can…imagining the prospect of searching for my child for months, only to have the police find pieces of him…I imagine that I’d be saying, “Give me the device, now. I want to know where my child is at all times.”

If it could keep a tragedy from happening, how could I not take it?

No easy answer. Just a boy that won’t be coming home to his family. Rest in peace, Avonte.

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Why I Joined the Boycott Autism Speaks Movement, Part One

autism speaksI’m doing some research into Autism Speaks that I’ve been meaning to do for a long time, trying to understand what exactly has led up the wide-scale boycotts of one of the most well-known autism research and advocacy agencies in the US.

I knew the basic details. In November 2013, Autism Speaks co-founder Suzanne Wright posted a letter on the Autism Speaks website on the eve of the first “Autism Speaks to Washington” Policy and Action Summit in Washington, D.C. In it she referred to the “autism crisis”, calling autistic children “gravely ill”, equating them with children who had gone missing, and blaming them for the break-up of families that are “not living” but merely “existing”. After stressing that “This is autism”, she called these families “despairing”, and mentally, physically, and emotionally “depleted”.

She then went on to talk about autism as a “monumental health crisis”, and a “national emergency” for which there’s no plan.

Now, anyone who’s worked in the autism community knows that there certainly are autistic individuals who need a lot of support, and families who feel very stressed and overwhelmed by the needs of their child. But the blanket statements about the capabilities of autistic children, the negative language around autism, and the bleak picture of autistic children, their prospects as adults, and life with them that the letter painted rubbed all sorts of people the wrong way – agencies, bloggers, advocates, and donors. John Elder Robison, one of the few autistic employees at Autism Speaks, even resigned soon after the letter was published, saying:

“I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people.  We do not like hearing that we are defective or diseased.  We do not like hearing that we are part of an epidemic.  We are not problems for our parents or society, or genes to be eliminated. We are people.”

Autism Speaks: Going a Little Deeper

What I didn’t realize until I started looking into this a little bit more deeply, in order to blog about it, is that rather than an isolated incident, this letter seems to be straw that broke the camel’s back. It’s way too much for one blog post. So let’s break it down a bit, starting with a 2006 PSA that Autism Speaks produced called “Autism Every Day”.

A number of thoughts went through my head as I watched this PSA. Having worked with autistic children and their families, I heard some of the frustrations and fears that I’ve heard parents express, and I was definitely empathetic. I saw and heard things that made me worry about how the parents were coping. I wondered, as I always do when there’s an interview being done in front of people that don’t communicate using words, how much the children understood what was being said in front of them.

I wondered how Autism Speaks reconciled going in and doing this video with families that were obviously having such a difficult time and needing supports with the fact that in 2012 only 3% of their budget was spent on support services for autistic people, when 25% was spent on research into causation and prevention. Read more here  It felt like I was watching a camera crew going in and filming starving people, and then just leaving without giving them anything to eat. I understand the need for research (to an extent; I’m more into “acceptance” vs “cure” and would rather that research money go into interventions that will benefit those who are already diagnosed), but that budget represents what I think are skewed priorities for an autism advocacy agency.

Perhaps the skewed priorities stem from the fact that there are very few autistic employees at Autism Speaks and none on the Board of Directors. Autistic people don’t have a say in the direction of the agency. Read more here

The tone of the video bothered me immensely. If I was the mother of a newly-diagnosed child and was shown that video, I’d assume that my life was over and that my child would basically be in my care for the rest of my life – and why shouldn’t I trust that assumption, since it’s coming from Autism Speaks, an agency that’s so widely known?  There was nothing in that video about autistic people who do well in school and work, who live independently, who make valuable contributions to society…who get married, have children…whose parents, siblings and friends find genuine joy in their presence…nothing to suggest that raising an autistic child could be anything but struggle and heartbreak against a disease that needs to be eradicated.

Autism Speaks is Not Speaking for Autistic People

As bloggers Lydia Brown and Renee Salas have said so well (along with so many others), the idea that there’s something wrong with autistic people, that life is tragic for them and that they need to be cured, is an outdated one. It’s not reflective of the beliefs of a large and growing population of the autistic community, and it’s deeply offensive to them (read some of the comments on the YouTube page for “Autism Everyday”). To even make the assumption of autistic people who don’t communicate verbally that they’d rather that life be different is a dangerous one, to my mind. As I’ve written before, we don’t have the right to assume that everyone wants a life that looks like ours, and to assume, based on our ideas of what we think that we’d want if we were in their shoes, that they’d want the same thing.

The optimal way for Autism Speaks to its spend money seems, to me, to be on supports that allow autistic people to live the lives that they want and that allow families and agencies to support them to do so. But that doesn’t seem to be what Suzanne Wright wants – she’s even said that autism should be “a word for the history books.”

I don’t know about you, but that attitude scares me. I joined the the Boycott Autism Speaks movement based solely on the incident in November…now that I know that it was really just the tipping point, I’ll definitely be staying.

There’s more to say about this, but I’ll finish for now with a link to the 2014 Joint Letter to the Sponsors of Autism Speaks, letting them know about what’s going on there and signed by 26 agencies: http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks/

If you’d like to join the Boycott Autism Speaks movement, visit its website: http://boycottautismspeaks.com/

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