Month: April 2014

I Am Sounding the Alarm (on Autism Propaganda, Everyday)

[CN: ableism, murder, violence]

puzzleownToday is the last day of “Autism Awareness Month” and a lot of the news stories featuring autism will be tucked away until next spring. I’m sure a certain organization has had quite a successful “Autism Speaks Fundraising Month,” I’m sorry, I mean, April. Much of my discussion this month revolved around Autism Speaks. I simply can’t get away from them this time of year. From chocolate bunnies to baseball games to toys, many of you have seen your fair share of blue puzzle pieces and have probably inadvertently donated to them. I wrote earlier this month why I do not support Autism Speaks. Believe it or not, I have even more reasons.

When people ask me why I don’t like Autism Speaks, I explain their lack of focus on true advocacy for autistic people, the bulk of their funding does not go toward creating support systems and programs, and that their campaigns are dehumanizing and harm people on the spectrum. When people ask for specific examples of this, I first point to Autism Everyday. Some say I’m too stuck in the past, that was almost 10 years ago. Okay, then I Am Autism. When people mention that Autism Speaks apologized for it, I point to Suzanne Wright’s 2013 Call for Action. Whether I’m looking to a decade ago or to this year and their Sounding the Alarm documentary, Autism Speaks hasn’t changed their message. Since the public isn’t typically familiar with all of their rhetoric, I decided to break it down here. After reading this, tell me how I’m supposed to give my support to Autism Speaks. (more…)

The FDA Hearing and The Judge Rotenberg Center: What You Should Know

[CN: abuse, ableism, torture]

Photo: Canton Community TV

Imagine being electro-shocked for getting out of your seat without asking permission. Imagine that the reason you were being shocked was simply because you may become aggressive, and all of it was legal. Imagine wearing the electrodes on your skin 24-7, knowing you could be shocked at any moment. Imagine witnessing your peers be shocked as well. Imagine that all of this is ignored because the public barely, if at all, acknowledges your existence.

This isn’t fiction, nor is it in some far away place or just a shameful part of history. This is happening in America, in 2014. The Judge Rotenberg Center (JRC) uses “aversives” as part of their treatment program. Aversives can vary, but some of the aversives used at JRC include electric shock (which is not ECT), mechanical restraints, and food deprivation.  Aversives are used for behaviors the staff deem “inappropriate” or “disruptive,” ranging from blowing bubbles with saliva to not maintaining a neat appearance. In addition to electro shocks, JRC practices isolation and physical restraints as per multiple reports (including former employees and members of the New York State Education Department review team). This is a difficult read (major TW for severe abuse, death), but necessary if you want to truly grasp the horror that goes on at the Judge Rotenberg Center.

In 2011, the Massachusetts Department of Developmental Services (DDS) ruled that licensed facilities can no longer use “behavioral interventions” such as “electric shock, long-term treatment, or aversives that post risk for psychological harm” on new admissions. Essentially the treatment program JRC has long proclaimed as a success is now deemed unfit. The problem is, this ruling is only for new admissions. Any students previously admitted and receiving aversives as part of their program, however harmful, are still being shocked. This is troubling. Most people are unaware that there is no federal law banning the use of aversives, even shock devices, even on children, even in schools, even on people with disabilities. State laws vary and it can be illegal to use such aversives in some, but no federal law yet exists to protect our citizens against a human rights violation. There is a lot of work to be done here. (more…)

An Open Letter to Jenny McCarthy

Hi Jenny,

My name is Lauren and I’m a mom just like you. Well, aside from us both being mothers, there’s really not much we have in common. I suppose I’m one of those you are accusing of writing “blatantly inaccurate blog posts” about your position on vaccines. I’ve been writing about your vaccine stance since 2007, but I’ve only ever done so upon seeing an interview or reading your own words. My intent was never to spread falsehoods. You speak a lot about all those moms you’re helping. Well, there’s a big group of moms, and dads, who you have caused much frustration and irritation. Most of us didn’t have the media opportunities as you, so we took to our blogs. We did so to get our stories out, to dispel the vaccine lies you told, and to let the world know autism wasn’t all the horror story you shared with the world. We wanted to show others that recovery didn’t have to be the end-goal for parents and that those selling “cures” and quack treatments were simply modern-day snake oil salespeople. We blogged and spoke out, demanding human rights for autistic individuals and pleaded for much-needed resources. Many of us worked alongside other families and autistic adults to amplify our voices. Our goal was never to paint you in a negative light, we simply had to respond to your repeated rhetoric. Here I am, 7 years later, still doing so. Are you tired yet, Jenny? I sure as heck am. (more…)

Ommmggggg A Bomb Threat!!! #LOL

Lawyer's office

Social media posts are forcing too many kids into lawyers’ offices, or worse, jail.

On Monday, a teen was arrested for tweeting a bomb threat to American Airlines. A lot of the talk on Twitter following the threat and subsequent arrest poked fun at the cluelessness of a teenager. How could she make such a thoughtless tweet? It’s social media, everyone can read it! People wondered where her parents were. Some laughed when, over the course of tweets, the girl became anxious and apologized. Others were in disbelief that anyone, even a teen, would find such a hoax remotely funny.

But that’s just it, here we are, a bunch of adults trying to find reason in the actions and mindset of one of the most unreasonable of human beings–the teenager. I’m not excusing what this girl did. Clearly, she needs to learn that there are repercussions for making such public statements, and she should be taught that bomb threats are never cool. But her case, and countless others like it, point to the growing problem none of us seem to want to deal with. Whether it’s laziness or lack of awareness on the parents’ part, too many are not discussing Internet and social media safety with their children. It’s clear that at the minimum an overview of the legal ramifications should be included in those talks as well. Don’t wait until your kid is in high school to do this either. (more…)

“I chased my mom with an axe.”

[CN: mental health, violent crime]

image-1He said it with a smirk on his face. The tone was the same I’d use when telling my big sister I’d eaten the last cookie. I stopped gluing my collage and looked up. The art therapist asked Chris* what he was feeling at the time. He said he was angry. Then he smiled. The therapist reminded him it was not funny, and that he was there to get help so he wouldn’t do that again. He laughed. Chris was 10 years old. I went back to cutting out clips from magazines. Our project was a collage to express our feelings. Chris didn’t finish his. He was removed from the art room because he refused to sit back down and listen to the therapist.

He was the youngest among us. I was 15 and represented the average age of the patients in the adolescent ward of the psychiatric hospital. Most of us were high schoolers, working out our depression, anxiety, anger management, some were recovering from drug addiction and eating disorders. I was told by others that Chris had been in there a long time. Some of the patients privately disclosed they were afraid of him, others cracked jokes at how “crazy” he was and that he’d never get out of there. (more…)

Autism Speaks Never Spoke For Us

This is the first in a series of four posts on autism this month.

moneypuzzle2April. This used to be the month I despised most. It’s the time of year when the word “autism” is plastered on everything from pretzels to Toys”R”Us posters. (I still wonder where that money goes exactly…) Well-meaning friends and family would tell me how they made a donation to Autism Speaks or purchased an item which supported the organization. I’d cringe. They thought they were helping. They saw nothing wrong with the puzzle pieces, the demand for a cure, and felt Autism Speaks was helping people like my daughter. I wrote a lot about why I could not support Autism Speaks and frequently tried to explain it to those around me. Sometimes, it would get so tiring and the month of April was always the worst. I’d breathe a sigh of relief when May 1st came around.

Autism Speaks repeatedly presented the public with a desperate and depressing message. (more…)

I Support Shanesha Taylor

Update 4/12/14: Please join the virtual petition asking Bill Montgomery to drop charges against Shanesha Taylor. URGENT, please sign before Tuesday!!!!

Desperation. That is where Shanesha Taylor undoubtedly found herself last week when she left her children alone in a car so she could attend a job interview. I’ve seen support for Shanesha in the days since her arrest, and that compassion has warmed my heart. I’ve also seen a lot of finger-wagging, many a “how could she,” and doubt that she had no other options. These responses have saddened me. It’s easy to look at someone else’s situation and play Monday morning quarterback. You can revise someone’s life and say you’d have done this job training or received this college degree or not had kids or given them up or made sure their father stuck around or found family or friends to help out or do any number of things you’re positive would exempt you from ever having to make the decision to leave your young kids in a car with the windows cracked.

Perhaps some of those who have the answers, who know exactly what steps Shanesha Taylor and others like her could have taken to be in a different place, maybe they do know better. It’s possible those people did make all the right moves and will never find themselves homeless. I applaud them. I also think, with the exception of those with trust funds, it’s careless to say it could never happen to you. Life can shake anyone down, and without a safety net, any of us could be Shanesha Taylor. Until you have been there, deciding between leaving your children in a parked car for an hour or not taking the interview that could help move them out of that car and into a home, take a seat. (more…)