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.

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/

Thoughts on Privilege

privilegeI posted a link to this article about privilege and intersectionality by Gina Crosley-Corcoran on the Facebook page the other day, and got a message this morning that it’s gotten more attention than 95% of what I’ve posted on that page, so people must be looking at it!

I’m very familiar with the idea of privilege – I started reading about it a lot when I started writing this blog. It’s an idea that would make intuitive sense to me even if I hadn’t seen it in action. I can think of examples from my work and personal life, going as far back as elementary school, where I saw how membership in certain demographic groups in society affords people “privileges” that other groups don’t necessarily enjoy.  For some great articles about how privilege manifests itself, by the way, see Sam Killermann’s writing on the subject at itspronouncedmetrosexual.com

I was less clear on intersectionality for a long time. I thought originally that it simply referred to the ways in which different types of privilege interact and the effect that it has on peoples’ lives (which I guess is ultimately true). But one of the things that made me like Crosley-Corcoran’s article so much was that her explanation of intersectionality took great care to point out that people can be privileged in some ways but not in others.

Privilege, Intersectionality, and Me

Crossley-Corcoran’s article is timely for me.

I feel like I saw intersectionality in action constantly when I supported intellectually disabled people as an agency worker. While I shared with them the experience of being part of non-privileged group (disabled people), I was definitely privileged in ways that they were not:

  • People addressed me when I was out in public instead of the person I was with
  • Assumptions about me were largely positive. People assumed that I lived on my own, had a paid job, etc., instead of being surprised to hear it (the way they often were with the people I supported who did these things.)
  • I could assume, as person without an intellectual disability, that information about the world would be provided to me in a way that would ultimately be useful, even if I had to work at it a bit. For government services in particular, it’s often difficult for me to find out where to get information about important services, and to difficult to understand the information once I find out where to get it – people that I’ve supported, even with a fair level of literacy, have found it it next to impossible, and I spent a lot of my time with them helping them to find information and then present to them in a way that made sense to them.

I do feel that, as a disabled, non-Christian woman I’m part of several non-privileged groups. But I also think, as intersectionality tells is possible, that I’m an extremely privileged individual particularly among disabled people. I was thinking about that just before the holidays, even before I read Crossley-Corcoran’s article:

  • I’m reasonably healthy. My disabilities aren’t severe, and don’t have pain associated with them. I don’t need costly special equipment, supports, or a special diet.
  • I’m educated. People tend to (whether they should or not) give more authority to the words of people who are educated.  I can safely assume that I can read what’s put in front of me, whether it’s a road sign, instructions, or a contract. A wider variety of higher-paying, higher-status jobs are open to me (theoretically…but that’s another story, about high unemployment rates for disabled people).
  • I have enough money to meet my needs (largely because I’m lucky enough to have a job and don’t have to rely on poverty-level disability income support). I have a roof over my head. I have enough money to pay for food, clothing, and my transportation. I’m lucky enough to live in a country with universal health care, so any care that I do require is provided at very minimal cost unless I require things that OHIP doesn’t cover.
  • I’m straight, cisgendered, and white, and therefore protected from a variety of prejudices that tend to manifest especially in a small town. As a non-Christian, I occasionally experience the effects of Christian privilege in others, but not to the point where I’d consider it a real issue for me (although I certainly understand why it is for others).

When I was thinking about privilege and intersectionality before the holidays, I ran into some of the thinking traps around it that Crossley-Corcoran identifies. I wondered if I the areas in which I am privileged cancelled out the areas in which I’m not, or if I should feel badly about feeling privileged in the ways that I am. I think that I knew intellectually that I shouldn’t, because I’ve even told male friends in discussion about gender and privilege, “It’s not your fault that you’re born the gender of the two that’s doing most of the subjugating, and it’s not a personal indictment that you’re part of that just on the basis of being born that gender.” But Crosley-Corcoran’s article really drove home on  person level that privilege isn’t something over which to feel guilty:

“And listen, recognizing Privilege doesn’t mean suffering guilt or shame for your lot in life. Nobody’s saying that Straight White Middle-Upper Class Able-Bodied Males are all a bunch of assholes who don’t work hard for what they have. Recognizing Privilege simply means that being aware that some people have to work much harder just to experience the things that you take for granted (if they ever get to experience them at all)”

I don’t think that I’ve seen an explanation of privilege that’s much clearer than that. And even if you don’t agree that privilege exists (as many people don’t), I think that at least knowing the idea is out there and keeping it in a repertoire of “lenses” through which you view the world is constructive. It’s a good personal exercise to look at what life’s like for other people, and to wonder why that is.

I’ll be doing some more thinking about this.

Be sure to read Gina Crosley-Corcoran’s article, Explaining Privilege to a Broke White Person, on her blog, “The Feminist Breeder”.

Image credit: lambros / 123RF Stock Photo