Michelle Sutton, Autism and Self-Diagnosis

In 2014, Jerry Seinfeld, in an interview with Brian Williams, said, “I think – on a very drawn-out scale, I think I’m on the spectrum.”

Asked what made him think that, he said, “You’re never paying attention to the right things. Basic social engagement is a struggle. I’m very literal; when people talk to me and they use expressions, sometimes I don’t know what they’re saying. But I don’t see it as dysfunctional. I just think of it as an alternate mindset.”

Content Note: Self-Diagnosis, Support/Services Eligibility

Jerry Seinfeld at a premiere, waving to the camera with one arm while his other hand is around his wife Jessica's waist. Keyword: Michelle Sutton
Jerry Seinfeld
“Bee Movie” LA Premiere
Mann’s Village Theater
Westwood, CA
October 28, 2007
©2007 Kathy Hutchins / Hutchins Photo

Image Description: Jerry Seinfeld at a premiere, waving to the camera with one arm while his other hand is around his wife Jessica’s waist.

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The Autism Community Reacts

I remember anger from the autism community at his comments, like Kim Stagliano’s reaction, Ginger Taylor’s article (I remember this one specifically), and this post from Autism Daddy’s blog.

I don’t remember picking up on this distinction: The people who felt most negatively about Seinfeld self-diagnosing himself seemed to be parents. Autistics like John Elder Robison seemed more positive, encouraging the autism community to welcome Seinfeld. Lots of excellent points in his article.

But I don’t remember reading it in 2014. I don’t much positive reaction at all to Seinfeld’s comments. Maybe that’s why this enthusiastic post by Michelle Sutton about how she self-identifies as autistic confused me so much initially. I didn’t think that self-diagnosis was something was accepted or encouraged by any disability community.

How Would Michelle Sutton React to My Self-Identification Process?

To be fair, I’ve never really heard someone self-identify (the term that Sutton prefers to self-diagnosis) as a stroke survivor. For those that insist on self-identifying as being clinically depressed or having obsessive-compulsive disorder (two things with which doctors have diagnosed me), I tend to shift the conversation onto feelings and away from labels. Something about the person’s feelings made them self-identify that way, regardless of whether the self-identification is accurate or not. Or whether I believe it’s not. I’m often skeptical when people say things like, “I’m really depressed” or are convinced that they have OCD because they wash their hands a lot, but we can connect on feelings.

I’ve long figured, just from my own research and experience, that I have Attention Deficit Disorder. No one explored the possibility when I was a kid (I think likely because my grades were good). But as an adult, I can see ADD traits in myself, both now and when I was a kid:

  • Constantly losing things
  • Forgetting appointments
  • Getting and staying organized
  • A lot of problems with daytime sleepiness

The ADD assessment isn’t covered by Ontario’s health plan and is very expensive (not a reason I actively avoid trying to get a medical diagnosis, as Michelle Sutton does, but certainly a reason for why getting one isn’t possible right now.) I’ve told people that I suspect that I have ADD and will talk about the reasons why. But I don’t self-identify with it. It doesn’t feel right to me.

I can imagine why Michelle Sutton might tell me that I’m misguided, and I might talk with her about how her anti-psychiatry stance and “I’m being defiant” doesn’t work for me. And for me, ultimately, I’d rather have a doctor’s diagnosis, but I admit to bias – having worked in social services, I know that no diagnosis means no support services.

But even if it turns out that Michelle Sutton isn’t autistic beyond her self-identification, and I’m not suggesting she isn’t, if she’s found ways through her research and her connections with the autistic community to become more comfortable with all aspects of herself, and the community itself is supportive, who am I to judge?

I don’t talk with other people who have ADD…but I read some blogs on a regular basis, and I know that adopting some of the strategies that people use to stay organized have helped me to become more organized and less stressed out about losing things all the time. So even if I don’t have ADD, who’s harmed if I use the strategies and they make my life easier? No one that I can see.

I’ll have to do some more thinking about this. In the meantime, I’m glad that I read this blog of Michelle Sutton’s. At the very least it corrected some of my  erroneous thinking about the autistic community’s stance on self-diagnosis. I will put her blog on the list that will go on this site’s blogroll (when I get time to put it up!)

ETA: Seinfeld later backtracked on his comments and said that he wasn’t on the autism spectrum

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Fox News Contributor Calls Autistic Child a “Snowflake”

There’s a quote that goes, “When you assume, you make an ass of you and me.” It’s a funny reminder that speaking and/or acting before we know the whole story can make us (and other people) look foolish.

Content Note: Ableism, Bullying, Cyberbullying, Non-Pology

Snowflake image on blue-green circle. Keyword: Tammy Bruce

Image Description: Snowflake image on blue-green circle

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Sometimes making assumptions does more than make people look foolish, though — disabled people particularly are often harmed by the assumptions of others. Assumptions like, “If you can’t talk, you have nothing to say”, “people with intellectual disabilities don’t need families and are best cared for in institutions”, “disabled people don’t work for the money”, and “disabled students in schools are better off segregated from non-disabled students” have been used to violate the rights of disabled people in Canada and the US for almost a century, and we are still fighting for the right to live safely as full, active participants in our communities.

Often assumptions are smaller, and their effects are less far-reaching, but just as sad to witness. Let’s consider a segment on the May 10th episode of “Tucker Carlson Tonight”, guest hosted by Fox anchor Bill Hemmer.

Fragile Children

Hemmer’s “Are Our Children Fragile?” segment focused on an event for military families hosted by VP Mike Pence. While addressing the families, Pence accidentally brushed the face of one of the children standing just behind the podium, Michael Yee, who afterward said to him several times, “You owe me an apology.” Footage of the interaction here:

 

Pence bumped him in the nose. He wanted an apology. Fair enough.

Not according to Tammy Bruce, radio host, and Hemmer’s guest commentator on what happened. Video in the linked article.

Transcript:

Tammy Bruce: I guess we’re giving birth to snowflakes now, because that looked like that kid needed a safe space in that room.

Bill Hemmer: Is this a different time or not?

Tammy Bruce: It is, a bit. The eight-year-old pretty much stalked the Vice President afterwards. He wasn’t even — the headlines said he was “hit, he was struck, he was smashed, he was bumped.” The fabric on his sleeve touched his nose maybe. He stalks the Vice President, says, “you owe me an apology.” This is like he was channelling [University of Missouri professor] Melissa Click wanting to get some muscle into the room. This is crazy. Now look, he’s seen it either on television, maybe he’s seen it at home perhaps, but he felt aggrieved because, I don’t know, the vice president maybe slightly touched his nose. It’s pretty amazing.

(Background Reading: For those that aren’t familiar with how “snowflake” has come to refer young people that are weak, entitled, and unable to cope with life, this Guardian article provides a good overview that also touches on the conservative disdain for “safe spaces”.

This New York Times op-ed also discusses safe spaces.

Reading Suggestion for Tammy Bruce

I read Stephen Covey’s “7 Secrets of Highly Successful People” when I was in high school. Covey tells a great story in that book about finding himself on a subway one night with a couple of kids that were running around, making noise and grabbing peoples’ papers and generally annoying everyone, and a father that seemed out of it and unwilling to do anything about them. Covey talks about getting more and more annoyed, tired after a long day, until he finally has it and asks the father if he maybe wants to do something about his kids.

Covey says in his book, “The man lifted his gaze as if to come to a consciousness of the situation for the first time and said softly, “Oh, you’re right. I guess I should do something about it. We just came from the hospital where their mother died about an hour ago. I don’t know what to think, and I guess they don’t know how to handle it either.”

Covey talks about how immediately his orientation toward the man changed. Instead of seeing a man that he assumed was just too lazy to take care of his kids, he saw a man that was grieving and overwhelmed, and his first instinct became to find out how if he could help.

Assumptions, people. Everything isn’t always as it looks at first glance.

Tammy Bruce and Assumptions

Tammy Bruce made a lot of assumptions about Michael Yee, and it wasn’t long before she figured it out. Presumably (I realize that I’m making an assumption) it was because she saw CNN’s Jake Tapper’s piece with Michael’s mother later that week, in which we find out that ten-year-old Michael (not eight-year-old, as Bruce said) is autistic, has only been verbal for five years, and has been working very hard with his mother, teacher and therapists on social skills, including for what behaviours he needs to apologize and for what behaviours he should expect an apology from others.

Because the next time we saw Tammy Bruce on Fox News, she was talking about Michael very differently.

Here’s Jake Tapper’s interview with Michael’s mother, Dr. Ingrid Herrera-Yee. Transcript starts at 1:19.

 

Jake Tapper: Regular viewers of “The Lead” know that military families often turn to us then they feel that they’ve been wronged, and that is the case with Michael’s mother, Dr. Ingrid Herrera-Yee. She joins me now. Thank you so much for being with me today. A lot of comments about Michael from people who don’t know him — why don’t you tell us about Michael?

Dr. Herrera-Yee: Well, Michael is ten years old, he is on the autism spectrum, he’s a military child, and he loves the White House; he calls it “the peoples’ house”, he was excited to go visit. For those who don’t have a child with autism, they need to really rehearse and, you know, a lot of their therapy involved practicing social interactions.

Jake Tapper: How long has he been verbal?

Dr. Herrera-Yee: Only five years, so about half his life he’s been verbal.

Jake Tapper: So that was — when you see that video, you see a kid who’s working hard to —

Dr. Herrera-Yee: I see a champ, yeah.

Jake Tapper: A champ — to say…somebody did something and he thinks an apology is owed.

Dr. Herrera-Yee: Absolutely. Because for him it was about manners. He says that to me and his dad all the time: ”You owe me an apology”. It’s not meant in any sort of negative way, it’s just him learning, again, the social interaction with someone else — so, what is appropriate to say, what isn’t…and we teach him about being, you know, having his manners and apologizing if he’s done something wrong. He was simply following, you know, what he’s learned in therapy, and what his wonderful teachers at school have taught him, and what we’ve taught him at home, just to, you know, make sure that there’s an apology there. And he was so sweet about it — just “Excuse me.” There was no…he wasn’t overly…

Jake Tapper: No, no, he was wonderful. He was very charming. And I assume that you thought until Friday night that the media coverage seemed respectful, and, ”Look at this charming moment”, and the Vice President was wonderful.

Dr. Herrera-Yee: The Vice President was wonderful. My son was so excited to be there and to meet him. He’s a big fan of the Vice President. He (Mike Pence) came into the room…he (Michael) doesn’t know about politics, he was just hanging around, having a good time. They gave him ice cream and brownies, you know? He had fun. And the Vice President was so respectful, he gave him a hug at the end, gave him a high five. He apologized when he noticed. It was no big deal. It was just a cute little clip.

Jake Tapper: And then what happened Friday night? When did you find out about, um, this attack of your ten-year-old boy?

Dr. Herrera-Yee: Well, um, I’d actually gotten a call from my mother, who had seen a teaser, and she had told me that they were going to talk about Michael. Now, earlier in the morning, on Fox and Friends, they’d talked about Michael in a really positive way, so I was excited. So I sat down with my coffee and started watching, and then suddenly it just went south. I was…devastated…when I saw — and what they were saying. People who- they didn’t even know his age. They didn’t know who he was. They were really taking out of context a really innocent, you know, interchange between the Vice President and my son.

Jake Tapper: And you have-you have other children. And your fifteen-year-old, Will-um, this hit him pretty hard.

Dr. Herrera-Yee: It did. I’ve tried to shield my children from this, as any, you know, parent would. I would not want them to, to be reading some of the comments that are out there about my son and my family and myself. And he, unfortunately, being that he’s a teenager and he’s online, saw this. So, not understanding, he went online and answered some of the negativity, trying to defend his brother. But he was viciously attacked online, and I came home to find him crying, um, about this. So, it’s definitely affecting our family.

Jake Tapper: How can we fix this? What do you want? What do you want to be done for this wrong to be righted?

Dr. Herrera-Yee: Well first I’d want people to be more aware of autism and how our kids interact in the world. And, um, second, just like Mike asked the Vice President so sweetly for an apology, I’d like to ask, on his behalf, for FOX News to apologize for having used my son out of context, and using those really horrible words to describe him and our family. That’s really what I would want to come out of this, is just more awareness. And please don’t use kids — whether they’re typically developing kids — it doesn’t matter that he’s autistic or he’s a military kid, forget all that, that doesn’t matter. He’s a kid. And you don’t use children as examples on national television like that. I would hope that this is the very last time that this happens.

Jake Tapper: Thank you so much for being here. I know that it’s not easy to do that, but you’re standing up for your son, and I really appreciate it.

Dr. Herrera-Yee: Thank you very much for having me.

Jake Tapper: Of course.

Tammy Bruce apologized after “The Lead” segment aired.

Tammy Bruce’s Apology


Transcript starts at 0:13.

Tammy Bruce: Good Morning, Bill, thank you so much. First of all, I am so sorry to the family. My intention was never to hurt a kid and his mom. We had absolutely no idea that Michael was on the autism spectrum, and as a gay woman and feminist, I’ve spent most of my adult life working to improve the lives of women, children, and those that are disenfranchised. I get it and I apologize. I also appreciated the boy’s mother, Dr. Ingrid Herrera, public comments, and her clarity on this. A main lesson here, no matter intent, is to leave kids out of our political discussions. We certainly agree on this.

Meet Me at Camera Three, Tammy Bruce

As a disabled woman, I have some concerns:

  • You “apologize” to “the family”, despite demonstrating later in this trainwreck of an apology that you know at least the mother’s name and, more importantly, Michael’s name. You never apologize to any of them by name. This *screamed* at me.
  • You say that you never intended to hurt a kid and his mom. What did you intend to do? You made it clear in your remarks on “Tucker Carlson Tonight” that you knew you were commenting about a child. You called him a snowflake and implied he needed a safe space (and after viewing your other videos, noting that you’re a frequent guest on Carlson’s show, and listening carefully to your tone of voice as you said those things, I actually feel comfortable assuming that you fall on the political far right where “snowflakes” and “safe spaces” are unwelcome), and implied that Dr. Herrera-Yee wasn’t a good parent. If that display on “Tucker Carlson Tonight” was you not intending to hurt a kid and his mom, God help the people you do intend to hurt!
  • You had no idea that Michael was autistic? For what reason do you think that this buys you some slack? You made a mistake because he didn’t “look disabled enough”? You made a mistake because you couldn’t be bothered to do some research into this story? Both? Whatever it was, the fact remains that you saw a chance to make a political point by taking a cheap shot at a kid on national television, and you went with it. And as his mom said, that’s not an okay thing to do to *any* kid. Shame on you.
  • You’re a gay woman and feminist working for social justice? Great. Keep it up. But talk about it somewhere else. All of that doesn’t mean that you “get it”, and it’s not really the point of all this. Or it shouldn’t be.
  • You agree that the main lesson here is to leave kids out of political discussions? Then why did you bring Michael into a political discussion in the first place?

You did owe Michael an apology, Tammy Bruce. You made assumptions about why he felt so strongly about getting an apology from the Vice President, and said some hurtful things as a result. But here’s what really bothers me: I suspect that you apologized only because you (or Fox) were uncomfortable with the fact that you’d bullied a disabled child, and not that you’d bullied a child *period*. Your beliefs as outlined in your apology contradict your words in the “Tucker Carlson Tonight”, otherwise — if you really believed what you said in your apology applied to all children, you wouldn’t have said the things you did in the first place.

Parents of non-disabled children should be insulted by that, and parents of disabled children should be, like Ingrid Herrera-Yee, uncomfortable with this whole business.

I will give Fox News kudos for at least attempting an apology. There are definitely networks out there that wouldn’t have. And if what you said was enough for Michael and his family, then that’s great.

But I know it wasn’t enough for the disability community, Tammy Bruce. I’ve heard them talk about this.

It wasn’t enough for me, either, Tammy Bruce.

Just so you know.

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Rest in Peace, Anthony Corona

I’ve just heard about Anthony Corona’s death in December. I have thoughts.

When I was in school to become a Developmental Services Worker, which is the certification most preferred by the Ontario government for those who work in support positions with intellectually disabled people, the curriculum didn’t include Crisis Prevention Institute’s Non-Violent Crisis Invention certification that most agencies required in staff at the time.

Content Note: Ableism, Restraint, Abuse, Neglect, PWD Death

Small, lit, white candle held in someone’s cupped hands lights the darkness. Keyword: Anthony Corona

Image Description: Small, lit, white candle held in someone’s cupped hands lights the darkness.

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The school I attended didn’t believe in the NVCI certification; its philosophy was that workers should absorb any violence directed at them by the people they supported.

I argued with my teachers about this; I didn’t think it was fair to potentially many people, depending on the circumstance. I had a rock-solid belief, supported by the NCVI philosophy, that restraint should be a last-resort measure. But I also wanted to be sure that if I found myself in a situation where a person I was supporting was agitated and at risk of hurting self, others, or me, that I had the tools to effectively de-escalate the situation, and if a restraint (or hold, as NCVI calls it) was the tool that was necessary — well, that was regrettable, because the situation ideally should been escalated before it got to that point, but if the person was so out of control that a hold was necessary then the analysis of how we got there could wait, because the safety of everyone involved was at that point the primary consideration.

Safety.

Which is partly why I was so upset to hear that after being held in restraint on his bus ride home from school last December, 18-year-old autistic youth Anthony Corona died. I didn’t hear about this when it first happened, but it’s come up again recently because the coroner found he died from positional asphyxia — he’d had his head held between his knees for twelve minutes, blocking his airway and circulation, and he died soon after the people restraining him had discovered he’d stopped breathing.

There is no excuse for this.

Corona, who was also intellectually disabled, seemed from accounts to be out of control when he was restrained — he’d thrown a half-full bottle of water at an aide and physically attacked another student. At 5’10” and 190 lbs., he was a large young man, but could have been restrained easily using a two-person NVCI hold, removed from the bus without breaking the hold, and held and periodically repositioned by employees (who could have spelled off by other employees, if necessary) outside the bus until more assistance arrived. He, the employees doing the hold, and anyone else in the area would have been safe, provided that the hold was being done properly by trained individuals.

CPI does not sanction (nor does any other system of behaviour management of which I’ve ever heard) forcing an individual’s head between their knees and holding it there for even ten seconds, let alone twelve minutes. This restraint caused his death by positional asphyxia — and the determination that autism and was a contributing factor needs to be struck from the coroner’s report. Autism is not a lethal condition, and the suggestion that behaviours exhibited by Anthony Corona (ones that the coroner has apparently linked to his autism diagnosis) contributed to his death is ableist victim-blaming.

Shame on the coroner.

I wish that I could see the police report, because several things have struck me as I’ve read media accounts of Anthony Corona’s death and events leading up to it on which I’d like clarification.

Restraint on the Bus

Anthony Corona was “harnessed” into his seat (this account also mentions that he was harnessed) for the two-hour bus trip to and back from Bright Futures Academy each day. Also, school president Becca Colucci said that students are seated on the bus based on their behaviours. Another Bright Futures Academy student on the bus told a reporter from the Press-Enterprise that staff often didn’t secure Anthony in the harness and that he knew how to slip out of it. Becca Colucci corroborated this.

Restraint should always be the last resort. Was a harness and chain (whatever role it played) truly the least restrictive option for bus transport for Anthony, given that it restricted his movement for a total of four hours a day? Was it fair not to give him the choice of with whom he wanted to sit (or at least near?) This institutional approach to transportation practically guarantees behaviour issues in people prone to them, especially given that, as the student mentioned earlier also told the Press-Enterprise reporter, staff generally could be “quite rough” with Anthony and seemed reluctant to deal with him. This points to staff-related issues around Anthony that needed to be addressed, for everyone’s safety, before we even get into what happened on the bus, particularly around putting a safety plan in place for both school and bus.

Anthony Corona’s Safety Plan

Even though Anthony was secured in his seat, if he had a propensity toward behaviour that could put himself and/or other people risk, a safety plan for that contingency should have existed so that in an acting-out episode, all staff know details like what holds are and aren’t authorized, when the bus should be stopped, what the other students should do and who should initiate that, who at the school should be called, etc. — in short, making sure everyone knows their role, has the information they need to perform that role effectively, knows from whom they’re supposed to take instruction, and what the chain of communication is. If they can’t get on board with the safety plan, they need to work somewhere else, because these plans exist for a reason: to keep *everyone* safe until the person is under control again.

Apparently a safety plan did exist. We’ll come back to that.

T here were 21 students on the bus the day that Anthony Corona died, with only 2 aides and a driver (even though there can be up to 6 aides on a bus.) Even if Anthony Corona was the only one on the bus whose behaviour the school considered a particular risk (and given that Bright Futures Academy serves “special education students referred by local school districts due to significant behavior challenges”, that’s probably not the case) two aides in this setting isn’t enough. Things must have seem stretched enough that a student felt compelled to intervene when Corona became agitated, which is absolutely inappropriate, and why there should have been enough aides on the bus to both safely de-escalate acting-out behaviour and clear the area to the greatest extent possible. If someone has become violent, other people need to be kept safe as well.

Now, the bus driver pulled over once he realized what was going on, and tried to help. However, it’s difficult to tell from media accounts what he was authorized to do. This article states that “Bright Futures staff were properly trained” before Anthony Corona’s death and subsequent restraint retraining for staff, so we’d expect that the bus driver could help out safely and effectively in this situation. However, the driver told the police that he was “unaware that Corona had a plan to control his behaviour”   Also, when the driver pushed Corona’s head between his knees, he was “trying something that his supervisor said had calmed Corona a few weeks ago”. The supervisor hadn’t reported the incident to the school.

In other words, he tried a new technique that presumably hadn’t been approved for use, with no idea of how it might interfere with what the aides were doing or how it might affect Anthony Corona (and, as a result, the people around him.) The aides let this happen despite knowing (presumably) that the technique wasn’t part of the safety plan.

For twelve minutes. This wasn’t a mistake that happened because someone made the wrong decision in a moment of panic. There was plenty of time to deliberate on whether they were doing the right thing, and they continued to use a technique that they must have known wasn’t approved.

Training

As history professor and disability activist David Perry pointed out, it wasn’t so long ago that Ethan Saylor and Eric Garner died for the same reason that Anthony Corona did —positional asphyxia. No trained person should have forgotten so soon that some restraint positions can be lethal.

When you get right down it, no trained person should figure that it’s safe to keep someone’s head pushed between their knees for twelve minutes. Shame on them and the people who “trained” them.

Shame On All of Them

The institutional practices, lack of coordination, and the assumptions both underlying and arising from both aren’t things that can just be apologized away, nor totally solved by the seat belt clips that the school bought to transport students more securely. Shame on Becca Colucci, for thinking that Bright Futures Academy’s “deepest sympathy” to the family and retraining in restraint for all bus staff are enough to address this. Apologies barely sufficed when an autistic student with epilepsy had a seizure and seriously burned his leg after allegedly being left unattended by Bright Futures Academy staff in 2015. When a vulnerable person that parents have in the care of your school dies at the hands of your staff (Colucci even told police that she didn’t believe that Anthony Corona was restrained correctly), retraining staff in restraint is only part of the answer — and the tip of the iceberg, really, because restraint should always be the last resort. Another part of it is the person in charge having the decency to resign.

And shame on the California Department of Education for not making Becca Colucci do it. Anthony Corona may have not have been someone that some aides at Bright Futures Academy wanted to deal with, but to his grandmother and aunts he was a family member.

Anthony Corona’s “crime” would have gotten a non-disabled student removed from the bus and bus privileges suspended for a period, or perhaps suspension from school depending on the severity of the fight with the other student; at the very worst, the police would have been called, but it’s unlikely that charges would have been made.

Corona, however, a young, intellectually disabled, autistic man, died.

Something to think about as we start Autism Awareness Month.

Rest in peace, Anthony Corona.

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Welcome to Sesame Street, Julia!

I finally watched the videos that “Sesame Street” has released about Julia, the autistic Muppet. And I like them.

Content Note: Lack of agency, negative media representation, Autism Speaks

"Autism" in brightly coloured block letters against a black background. Keyword: Julia

Image Description: “Autism” in brightly-coloured, block letters against a black background.

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Julia, who is supposed to be four-and-a-half, has actually been in development since 2015. She started as a storybook character, and a lot of work went into deciding how she’d be depicted as an autistic child on the “Sesame Street” program, including consultation with several high-profile autistic advocacy groups.

I think that the most important (and useful, as far as “Sesame Street” is concerned) reactions to Julia are those of autistic community. Being neurotypical, I can’t comment from that perspective, nor do I want to try. It did occur to me, though, that I can comment on her in a couple of other ways: I’m a person with education about autism and experience as as a support worker with autistic people in both the social services and education systems, I have a working understanding of the issues involved in how disabled people are depicted in the media, and I’m disabled myself.

Sunny Days, Sweeping The Clouds Away…

I expected all these voices to kind of “kick in” when I was watching the vignette when Julia and Abby Cadabby sing together. But when I watched the vignette, I just sat there and smiled. And I cried a bit.

Image Description: Video is stopped at scene with two puppets. One, Julia, is a “human” muppet with yellow skin, carrot-coloured hair cut in a bob, and 4 fingers on each hand. She wears a dark pink dress with light pink sleeves and holds a battered stuffed bunny. The other puppet, Abby Caddaby, is a “fairy” muppet. Her fur is pink and she has pink and purple pigtails. She wears a blue sundress. In the left bottom corner, there is a red bar with “Songs” written in white capital letters, and a red square with white joined eighth notes in it directly above. Viewers can click a white arrow in the middle of the picture to hear the puppets sing.

I didn’t notice (as I would in repeated viewings) that Julia doesn’t verbally acknowledge Abby when she first approaches and says very little to her during the video, that she makes limited eye contact and appears more interested in her doll and her singing than she does in being friends.

I really just did see two little girls (realizing later that Abby is a “fairy” Muppet; she has wings on her back and can fly) interacting…one maybe a bit shyer than the other…but they both like to sing and they seem to like being around each other. The moment where Julia offers her doll, Fluffster, and Abby kisses it is truly lovely. Is there a bigger gesture of trust at four-and-a-half than offering your favourite doll to a friend, and a more loving acknowledgement of how sacred that offering is than a gentle kiss on its head?

Julia and “Pure Moments”

I saw this same sort of “pure moment” quality in all the Julia vignettes. And while I know that these moments are highly idealized, I think that they’re perfect for “Sesame Street”, considering the target age group. If Julia can help children to enter school realizing that peers who exhibit behaviours associated with autism, like hand-flapping and anxiety about loud noise and a tendency not to make eye contact, aren’t threatening or scary, and that autistic children just want to play and have friends like everyone else, then her presence on “Sesame Street” will have been a blessing beyond words.

As a person who has worked with so many disabled teens and adults on bullying issues, that pure moment of friendship between Julia and Abby, a young child who would be traditionally viewed as disabled and a non-disabled peer, was exactly what I hoped for from Julia’s introduction to “Sesame Street”. And from a media depiction standpoint, I love that the interaction between Julia and Abby (and the interactions in the other vignettes) are unmediated by adults in the background explaining, “Well, Julia has autism, and that means that sometimes she may not say hello when you say hello to her…”

Not that there isn’t more initial explanation about Julia being autistic; there does appear to be on-set dialogue between the characters in Julia’s first episode about how she has autism (the person-first phrasing being what “Sesame Street” chose for its autism initiative) and why being autistic might cause her to behave in unexpected ways. However, it appears that the other “Sesame Street” characters mainly learn about Julia through their personal interactions with her, which always come back to message that even though playing with her may be a little different than playing with other children, they can still be friends and do the things they enjoy together:

“We can play side-by-side like we do sometimes. There’s lots of ways friends can play together!” Elmo says in one vignette where the two play with their dolls.

“It’s nice to sing songs with a friend,” he says in another.

“See that? We helped each other, Julia. And that’s what friends are for!” Abby says when the two girls are blowing bubbles together.

Criticisms of Julia

As always happens with any sort of disability-related initiative, not everyone is totally happy with Julia. In comments on the video vignettes, people seem concerned either that she’s too stereotypically autistic or doesn’t seem autistic at all based on her behaviour, and that people won’t know from seeing her that autism is a spectrum disorder. Julia’s creators addressed those concerns in this video:

Image Description: A red-headed woman operates the Julia puppet and a man in glasses and a baseball cap operates the Elmo puppet while a third man with a beard looks on.

“Sesame Street” writer Christine Ferraro says:

“In writing Julia for her ‘Sesame Street’ episode, the big question was, ‘What do we talk about?’ Because with autism it’s such a range, and there’s so many different ways that autism affects people, and there’s no way that we could possibly show everything. There’s no way that we could be symbolic of every kid that’s out there. So we had to pick one lane and go in it, and when we talk about it on the show, um, when Big Bird asks Alan, ‘What’s autism?’, Alan answers, ‘Well, for Julia it’s this,” and that’s what’s important.”

 

Writer Sarah Kurchak also brings up some issues about Julia that need addressing: the use of person-first language, the fact that “Sesame Street” characters (Muppet and adult) tend to speak for her and around her instead of letting her express her feelings, and the fact that her resource materials on the “Sesame Street” website haven’t been changed much since 2015. Julia is quite expressive as she is, but it will be interesting to see whether “Sesame Street” decides to explore assistive communication as part of her character development.

I also share Kurchak’s concerns that Autism Speaks was one of the organizations consulted as “Sesame Street” developed Julia’s (although I’ll rest a little easier knowing that the Autistic Self-Advocacy Network, an organization in which I have a great deal of trust and confidence, was also involved.)

Julia and The Power of Seeing Yourself Depicted in Media

Kurchak’s overall impression of Julia, however, echos that of most of the commenters on the YouTube videos: autistic people and their families, many of whom grew up watching “Sesame Street”, who wish that that Julia had been on the show when they were in school. She’s already clearly bringing joy to people who have long wished for more positive media portrayals of autistic people, especially for young children, both to raise awareness and to make autistic children and youth feel a little less alone as they grow up in a society where they’re often misunderstood.

View Julia’s resource materials and the rest of her vignettes

Conclusion

I find Julia delightful. But what I think about her doesn’t matter, ultimately. As I said earlier, the most important reactions to her are those of autistic people — I will be listening carefully over the next little while to hear what they are, and I look forward to Julia’s April 10th arrival on “Sesame Street”.

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Just a Reminder that Barron Trump is Off-Limits

There’s so much to say about Donald Trump right now. But there’s also some things I want to say about his ten-year-old son, Barron Trump, that I think we need to remember as we go into the Trump Presidency. Because the fact that the youngest Trump child was mocked on social media for his appearance at the Jan 20 inauguration is bad news, folks.

Content Note: Bullying, Exploitation, Lack of Consent

"No Bullies" in red block type with a black shadow giving it a 3-D effect against a yellow starburst with a bold red border and a black shadow. Keyword: Barron Trump

Image Description: “No Bullies” in red block type with a black shadow giving it a 3-D effect against a yellow starburst with a bold red border and a black shadow.

***

Mocking Barron Trump is Not Cool. Period.

Of course, we can’t know the political affiliation of the people who made the mocking tweets in question, but it doesn’t matter that much — I don’t care whether you lean to the right or the left, the minor children of political figures are off-limits. Trump’s adult children chose to get involved the campaign and Presidency — they shouldn’t have to put up with cyberbullying (no one should) but should expect potentially difficult questions they’re held accountable in their roles. Barron Trump didn’t have a choice about whether he’d be involved in this — he didn’t ask for the public scrutiny and shouldn’t have to deal with it. Liberals who’d bully a child aren’t ones with whom I want to be involved.

Barron Trump and the Autism Question

Which brings me to the other thing that’s happening that isn’t cool.

One of the tweets in the linked Bustle article above makes mention of the rumours that Barron Trump is autistic. Speculation along these lines started during Trump’s campaign, and it’s annoying that it’s still going on. Judging by the comments in this article, lots of people are more than willing to, based in the very limited footage of Barron Trump in the media and without the qualifications to diagnose, state definitively that he’s autistic.

As I’ve written before, I find armchair diagnosis extremely irritating (in general, not just when it’s happening to the Trump family.) I think it’s irresponsible, that it has great potential to perpetuate stigma and discrimination, and that the way that both parties used it during the election was dangerous. I wish that people wouldn’t speculate about whether Barron Trump is autistic. That sort speculation often comes with negative messaging about being autistic, and we should all know by now that there’s nothing wrong with being autistic.

In Barron Trump’s case, speculation about an autism diagnosis has also given rise to other unsubstantiated rumours and support for ridiculous demands on the Trump family. Despite acknowledging that there’s been no proof to support that Barron Trump has any sort of health condition, reporter Samuel Alioto writes that “evidence is mounting” that Barron is autistic, citing specific mannerisms and Trump’s parental age, and a tweet and remarks during a campaign debate by Trump about seeing a two-year-old become autistic after receiving vaccinations that many believe was about Barron; “it’s all over social media”, after all.

Crack journalism, that. Not much better than the video that caused Rosie O’Donnell to speculate whether Barron Trump is autistic, using as evidence things like his parents’ assertions that he’s good at computers, loves math and and science, and likes to spend time alone and keep his room clean, coupled with his “strange movements”, and “anti-social” behaviour at the RNC.

Melania Trump sued to have the video taken down and it’s since been re-uploaded, but it’s a piece of garbage and I’m not linking to it. Comments on the video suggested that her insistence on taking it down was a sign of denial or shame on the Trumps’ part, but I don’t agree — I would have done the same thing in her place. No matter how well-intentioned you fancy yourself, you don’t get to insert someone else’s kid into your cause and use footage of them without speaking to the family first. It’s disrespectful and completely dehumanizes Barron Trump in much the same way that Jim Carrey dehumanized Alex Echols when he used his photo without permission in an anti-vaccination Twitter rant.

Alioto’s conclusion that Barron Trump is autistic led him to write:

His parents choices have thrust Barron into the public spotlight, so now the issue must be addressed by his parents. If the story is verified, it would mean that Donald Trump did not tell the public a personal fact about his son that would have engendered public sympathy for him. He put his family’s privacy above political gain, which is certainly laudable. But now that there’s active speculation about Barron, it’s time to come forward.

Uh, no.

Maybe I feel differently about this because I’m Canadian and, honestly, I couldn’t tell you how many children the last three Prime Ministers have had, let alone their names. I suspect that I’m not alone in that. The Prime Minister’s children stay very low-profile in Canada (with notable exceptions, of course — Ben Mulroney and Justin Trudeau blew that theory to bits.)

But I’ve never felt like disabled people in general (let alone those in politics) are required to become advocates just because they’re disabled, nor are families with disabled children required to be poster families. Any disability that Barron Trump may or may not have is no one’s business but his, his family’s, and the people with whom they choose to discuss it, and if Barron is autistic there may be good reasons why the family isn’t speaking about it:

  • Melania Trump may not want added pressure to step into an advocacy/activist role.
  • The family may feel like the extra attention may not be good for Barron at a time when there are a lot of other changes to adjust to.
  • Barron Trump may prefer that the family not speak about it,

If Barron Trump does have autism, there’s nothing to suggest that that the family is staying quiet about it because of shame or denial, and the insinuation is unfair. Unless you’ve got everyday access to the Trumps, you can’t know what goes on in their family.

I loathe Donald Trump

But I’ve got no reason to dislike his kid. Is Barron Trump autistic? None of our business. Go about yours, and if you’re one of the ones mocking him on social media, leave him alone.

Because of nonsense like this, I’m spending too much time writing stuff that feels like uncomfortably like I’m defending Donald Trump. Don’t make me do it again.

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Conflicting Advocate Hats: Alex Spourdalakis

Content Note: Ableism, murder of disabled child, suicide, abortion

Gray sad face with closed eyes. Keyword: Alex Spourdalakis

Image Description: Gray sad face with closed eyes.

***

14-year-old Alex Spourdalakis was murdered by his mother Dorothy Spourdalakis and godmother Jolanta Skordzka.

And I say “murdered” deliberately, not to garner an emotional response, but because Alex’s mother and godmother did legally murder him. They gave him an overdose of sleeping pills with the intention of bringing about his death. When it became apparent that the pills weren’t going to kill him, they stabbed him repeatedly, and slit his wrists so deeply that they almost cut his hands off. They murdered him.

All this happened in 2013, but Alex Spourdalakis’ murder and the trial are back in the news again recently because Dorothy Spourdalakis and Jolanta Skordzka have been released from prison. They pleaded guilty to involuntary manslaughter and were sentenced to time served. After getting credit for the three years that they spent at the the Cook County prison, they are now free women. They spent significantly less time in prison than Robert Latimer served for murder of his disabled daughter, Tracey or that that Kelly Stapleton will for the attempted murder of her autistic daughter, Isobel, both of which were considerably less violent crimes.

Alex Spourdalakis and Two Important Conversations

As I did when I wrote about Kelly and Issy Stapleton, there are two important conversations to have when we talk about what happened to Alex Spourdalakis. One of them is what happened to drive a mother to such hopelessness that she felt there was such a lack of options for her child that his death was the most preferable. Overall, the media has painted Dorothy Spourdalakis as a woman who couldn’t get any support to deal with Alex’s specialized support needs, but the Chicago Tribune talks about how Mary Betz of Autism Illinois visited Dorothy Spourdalakis when Alex was hospitalized to find out what supports she needed, and was told that only a lawyer was necessary. The same article talks about how Dave Clarkin, a Department of Child and Family Services spokesman, said that family members refused “referrals to community-based services ranging from respite to psychological counseling.”

Why?

What is it about services that made the family reluctant to accept them?

The second discussion is about how even if there’s a total lack of services, it’s not an excuse to murder a child. And I acknowledge that the stress level for parents taking care of disabled children can get very high — it still doesn’t make killing a disabled child excusable. There’s a perception in our culture that if a disabled child is in pain, or if we figure that the child isn’t going have what we define as “quality of life”, or if care of the child or watching the child go through the challenges potentially involved with having a disability is going to take too great a toll on the parent(s), then the child’s murder not only becomes justifiable, but understandable.

If the child is disabled.

We’re disgusted by parents who kill their non-disabled children.

But when the child is disabled…different story. And there needs to be more discussion about that — there needs to be more discussion about how when you kill a disabled child, you are killing a child, period, and the deliberations of the justice system and the penalties for that action need to reflect that.

Read this blog for more about the murder of disabled children and two important discussions

Dorothy Spourdalakis and Jolanta Skordzka were originally charged with first degree murder, they should have been convicted with first-degree murder, and they should have received the appropriate sentence. Parents and relatives don’t get to decide which children get to have a future and which don’t.

I was speaking about this last week, and a friend said, “Careful…you’re starting to sound pro-life again.”

Alex Spourdalakis and Conflicting Advocate Hats

When Zika first emerged, I blogged about how abortion for ableist reasons sometimes makes me feel conflicted as someone who is both pro-choice and opposed to ableism, and how I deal with that conflict. Alex Spourdalakis’ story brought up some internal conflict as well, once my friend explained his statement…how could I be so judgemental of Dorothy Spourdalakis for denying her son the right to live based on her own needs, when I essentially gave women who had abortions a free pass for doing exactly the same thing?

“That’s *not* what I do,” I said.

“Isn’t it?”

I went home and thought about it.

And lost a bit of sleep.

And decided that no, that’s *not* what I do, although you’re certainly welcome to disagree.

Sounding the Same, But In Fact Very Different

Very soon after starting this blog and reading other peoples’ blogs, I started coming across perspectives that made me question, for really the first time, what my stance on abortion was going to be if I was going to be a disability activist. It was a more complicated question than I’d thought, and it made me fine-tune my stance to “It’s not a baby until it can live outside the mother” which can both simplify and complicate the whole business.

For the purposes of my friend’s query, however, it makes things very simple — for me.

I mentioned earlier that I wasn’t using the word “murder” in this context to evoke emotion because Alex was legally murdered. I just as deliberately *won’t* use the word “murder” when I’m talking about abortion because “murder” is a legal term that presupposes that a fetus is a person. And there’s where the rubber hits the road for me. My friend may be correct in that the language that I use to talk about the murder of disabled children sounds like the language that some (not all) pro-life people use to talk about abortion, but the two situations couldn’t be more different in my eyes.

Alex Spourdalakis was a person with rights guaranteed to him by both the United States Constitution and by the United Nations. He was a minor in his mother’s custody, which meant that she was responsible for his well-being. Her rights as a US citizen do not guarantee her a child that is easy to take care of, but in the state of Illinois a parent can voluntarily surrender a child should care of that child become too difficult for the parent to manage — it’s a drastic step involving relinquishing parental rights, but it’s not as drastic as making a profoundly ableist assumption that a disabled child has no chance at happiness in life and that death would be preferable to life in “the system” and committing murder based on those those assumptions.

Even though Dorothy Spourdalakis’ intention was obviously to kill herself after murdering Alex, her suicide note indicated that his murder was about what *she* couldn’t deal with putting him through anymore and with what she didn’t want for him (as it seems to often be in these cases.) A picture circulated through the media, showed the following excerpts from her handwritten note, touted as reasons that Dorothy believed Alex Spourdalakis was better off dead:

  • Alex will not be neglected and abused by the medical community anymore.
  • Alex will not suffer under “the system”
  • Alex will not be discriminated against anymore
  • Alex will not be treated as “retarded” or less than human because he is disabled and cannot speak for himself.

I have empathy for parents that are beaten down by a lack of support and the pain of seeing their beloved children suffering. I really do. But justifying the murder a 14-year-old who is “disabled and cannot speak for himself” in the name of getting him away from those that would treat him as “less than human” would be laughable if it wasn’t so infuriating. After all, what could be more dehumanizing than deciding that you have the right to take that child’s life based on your assumptions on his feelings about it? So forgive me if I can’t buy Dorothy Spourdalakis’ noble-sounding rhetoric.

Murdering your child because of any of the things she mentioned (or, as I believe it more accurately is, a parental desire not to see a disabled child deal with those things) is not okay. It’s simply not.

Which brings me back to what my friend said to me. As I said, Alex Spourdalakis (and Tracey Latimer, and everyone on this list of disabled people murdered by parents or caregivers, which is only current to the end of 2014) were people that were murdered. They had legal rights that a fetus (or developing child, if you prefer) doesn’t — and that I’m not invested in fighting for a fetus to get, frankly (or interested in arguing about why that position is right or wrong.) That’s a whole other fight to me, and one that, for a variety of reasons, I’m not willing to take on.

I do feel very strongly about the murder of disabled people and the how their murderers get the sympathy of the public and media and the leniency of the justice system. It’s a fight that I *will* take on because it’s simply not right.

Bottom Line

So that’s why my friend’s challenge to my thinking didn’t make me lose (much) sleep — and why I’ll continue to fight to make sure that:

1) There’s more investigation into why parents get pushed into these places of desperation, where murdering their disabled children seems like the only option for dealing with the challenges that they encounter on that journey

2) Ableism in all forms continues to be recognized and eliminated as much as possible.

3) Safe and affordable abortion is available to all women, regardless of their reason for making that choice.

I can manage wearing conflicting advocate hats, but I’m glad that people call me on it when my thinking appears inconsistent. I need that to stay the best advocate I can be.

Rest in peace, Alex Spourdalakis. I will not forget you.

Please read the Autistic Self-Advocacy Network’s Statement on the Sentencing of Alex Spourdalakis’ Murderers

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Annoyed by Autism Mom Hoodie

Content Note: Ableism, Autism Stereotypes, Caregiver Stress, Disability Stereotypes, Disabled Child Murder, Sexism

A Facebook friend, a mother with an autistic child, called attention on her profile last night to an “Autism Mom” hoodie that she’d seen advertised:

Blue pullover graphic hoodie with "Autism Mom" in prominent blue block letters at the top of a block of text in different colours of block text covering the front. Puzzle piece logo in red and yellow under the text, just above the hoodie pockets. Keyword: Autism Mom

Image Description: Navy pullover hoodies with large block of writing on the front in lines of yellow, red, and light blue, with a puzzle piece logo in red and yellow at the bottom.

It’s hard to read the writing on the hoodie. It says:

Autism Mom

A Superhero With

Messy Hair, Bags Under

Her Eyes, Stung Out

Nerves, Who Has A

Happy Child Because

Of All That She Does

The puzzle piece icon is underneath the writing.

My friend’s comments on the hoodie indicated that she wasn’t sure how she felt about it. I have some thoughts (obviously)

First of All…

Let me first say that, having worked in family support positions, I realize that parents of autistic children (and children with other disabilities) are often under enormous strain. I remember more than a few meetings with parents about their children where I changed course and said, “You know what? Your child’s actually doing okay right now. I’m kind of worried about your stress level. What can we do to help you?” And why wouldn’t parents feel stressed? Funding is constantly being cut. Wait-lists for supports get longer and longer. Even crisis services are difficult to access. And I know from my work doing planning for youth transitioning into the adult system that parents’ fears for what will happen to their adult children after they’re gone are ever-present and very difficult to deal with. I felt these fears too, seeing how little was available for the young people I was supporting. But I got to go home at the end of the day. Parents don’t get to do this.

I would never want to come across like I’m minimizing the potential stress involved with raising a disabled child. I’ve been privileged to see the genuine joy that families take in it, and working with those families was the best part of my job when I was in the field. But the unique challenges and stresses also need recognition.

It’s difficult to strike that balance between acknowledging the challenges involved in raising a disabled child and validating parents’ legitimate needs of frustration and getting across in general a more disability-positive in general that all parenting is difficult and that children are children — disabled or not, some have more complex needs than others.

This Autism Mom hoodie doesn’t strike that balance well. At all.

More specifically – What was Autism Mom Thinking?

This Autism Mom hoodie contributes to messaging that’s proving terribly dangerous for autistic children, who are murdered by parents and caregivers in shockingly high numbers. It says that autistic children cause their mothers nothing but grief and that autistic children can’t be happy unless mothers have worked themselves into high levels of stress and potential ill health. It reinforces the general stereotype that those who parent or do caretaker or support work for disabled people are “saints” because our needs are so difficult to meet and the specific messaging (that Autism Speaks has been shoving in our faces for so long) that autism is a evil entity that steals children and destroys families and that must be eliminated at all costs.

It’s also terribly shaming. Children (autistic and neurotypical) can be unhappy for a lot of reasons. Sometimes the reasons can be very difficult to address and can involve a wait-list for supports and/or treatment, a waiting period for treatment to take effect…the treatment may not work, and everyone has to start over…and some families have access to supports and treatments that others don’t, for a variety of reasons. But this hoodie would have mothers of autistic children believe that if their child isn’t happy, it’s because they aren’t trying hard enough. That’s a horrible thing to have pushed in your face when your child is suffering and you really are doing everything that you can, and it makes me furious.

And what about autism dads? Fathers don’t care about their autistic children and work hard to try make them as happy as possible? Ugh. This hoodie makes me more and more annoyed the more I look at it.

Doubtless some people will think I’m overreacting, but I’m a writer…words matter to me. Marketing fail, whoever made this shirt.

On An Unrelated Note

American friends, you’re probably aware that you have an election coming up.

I’ve been addicted to CNN for the past six weeks. I’m to the point where the thought of Donald Trump as President makes me feel physically ill. I’m begging you to keep him out of the White House.

Please.

Anyhoo. Have a great weekend and a happy Halloween!

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Hallee Sorenson is Autistic. Please Send her Birthday Cards.

So a picture is making the social media rounds this week of a young autistic woman, Hallee Sorenson, eating cake alone  on her 18th birthday. I’m not going to repost it because I suspect that  it was posted and has made the rounds through the media without her permission. But the photo went viral because Hallee invited her class and other teens in the community to a bowling party to celebrate her birthday, and no one showed up.  No one even sent an RSVP.

Content Note: Ableism, rudeness

"Autism" in brightly coloured block letters against a black background. Keyword: Hallee Sorenson

Image Description: “Autism” in brightly coloured block letters against a black background.

***

There’s no disputing that it’s a sad story. The same thing happened to the daughter of a good friend of mine when she turned twelve. I wasn’t at the party, but when I heard about it I was furious. Livid. Growing up in my house, when we got invited to a kid’s birthday party and there weren’t prior plans for that day, we went – we’d been invited, and it was polite to go.  Even if we didn’t like the kid that much, we were expected to suck it up, because it was only a couple of hours and at least there would be cake and ice cream. However, the parties where the whole class was invited were done by the time I was ten, making way for small-group sleepovers and movie parties and eventually the more adult parties of high school. But we’ll get to that later.

I was not so livid about the failed birthday party that my friend’s kid experienced that I posted on Facebook about it and solicited cards to make her feel better. That never even occurred to me. But it did to Hallee Sorenson’s cousin Rebecca, who posted this, along with the picture of Hallee at her birthday party, on her Facebook page:

“Hallee is an amazing person-a person I am proud to be related to. She is also a person who just happens to have Autism. She has never let that small detail define who she is as a person-which is why I refuse to use it as something to describe her.

“She had been so excited to have a party with her friends. She wanted to go bowling, have fun, and eat cake and Ice Cream. Invitations went out to her classmates at school and to other friends in the area. Hallee sat at her party anxiously waiting for her friends to arrive so they could have fun….but Hallee’s friends would never arrive. Not a single one. Below is the picture of her celebrating alone – eating her birthday cake. My cousin is a beautiful young woman who will always have the mind of a child…so as you can imagine, she was heartbroken and beyond sad. She was hurt…”

Rebecca also wrote that Hallee “loves getting mail- this would be the best birthday gift she could ask for. If you could find it in your heart to take a few mins out of your day and send her a card, I would be forever greatful,” She included Hallee Sorenson’s mailing address.

Transcript

Hallee’s Mother: Hallee is a sweetheart. She is a people-pleaser, she’s affectionate, she’s empathetic, she’s sympathetic, she loves everybody, she, um, has never met a stranger, everybody is a friend. We’d planned, um, a couple of months in advance for her friends at school to come. She asked for a bowling birthday, that’s the party that she asked for, so we went all out and we didn’t get a single RSVP. But I wasn’t super alarmed about that because the year previously we didn’t get any either and yet everybody showed up. But the day came and we got everything ready and nobody came, nobody called, nobody showed up. My sister had been texting me from Texas saying, you know, “How’s the party? How come there are no pictures yet?” and I stood behind a pillar, I was crying so hard I just couldn’t even talk, and I took the picture and I said, “There’s nobody here.” And she and her husband were driving and they had to pull over. They were both crying. It was terrible, and what do you do? You just feel devastated. It’s- it’s – autism is a super lonely condition, not just for the person who has it, but for their family, because there are so many things that we can’t do. We can’t go to a movie. We can’t go to a family reunion. When these kids finally want to do something that’s typical, um, you go all out, and to have nobody show, well, it’s – it’s absolutely devastating.

She (Hallee’s cousin) said, you know “Hey!” you know,  “I’m going to try and get some cards for Hallee” and then she shared it on her own personal page thinking, you know, friends would pitch in, and it just took right off the charts. It went from page to page and started jumping by the thousands. We’ve got people from Vietnam that have contacted us that want to send her cards, and churches and schools all over the UK, Scotland England. It’s amazing. I mean, how do you respond to something like this? They just want this kid to smile on her birthday. I mean, how do you say thank you enough for that? We are just so grateful. So grateful. And it’s so exciting for her. And I think that people are, you know, um, ready for something happy. People want to do something good  for somebody, and this fits that bill, and they’re going to do whatever they can to make sure she’s happy, and that’s the best feeling

Hallee: Friends would write me so that they can good, celebrate me. And they can be good friends and love me so much. And wish me happy birthday. And best friends in the world. Okay?

***

I’ve discussed this story with a variety of people, and read many comments on the media coverage. The disabled people that I’ve seen comment on it have almost always reacted negatively, for a variety of reasons, and are talking about it mainly amongst themselves. I don’t see their comments on the media accounts, and there may be a good reason for that: when I see anyone’s public comments deviate from the narrative that soliciting cards from strangers over the internet to help lonely, autistic Hallee Sorenson feel loved and valued, they’re attacked.

“Congratulations. You’re a horrible person.” someone said in response to a comment suggesting that brought up some of the issues that disability advocates are raising.

Brace yourself, folks. I’m about to show what a horrible person I am.

Hallee Sorenson’s Party

Even though Hallee Sorenson may “always have the mind of a child”  (I could do an entire blog post on how unfair it is to assume what developmentally disabled people do/don’t understand and the dangers of treating them as “eternal children” on that basis, but I’m going to just note that these are issues and move on), she was legally an adult at 18. She should have had the opportunity to plan her own birthday party to the greatest extent possible. Apparently she did say that she wanted a bowling party, but then, in her own mother’s words (see video), “we went all out.”

What does that mean?

Who made the guest list for this party? If Hallee Sorenson was the one who said, “I want to invite my classmates and these other teenagers for bowling and cake,” someone should have said to her, “You can do that. Your choice. But 18-year-olds usually don’t go to cake and ice cream parties, and not everyone likes bowling. The people that you want to come may not come.” When my friends and I were eighteen, we had part-time jobs, family obligations, and homework to do during the day on the weekend so that we could go out on Saturday night and do more homework on Sunday night. I would have sent an RSVP to Hallee’s party if my my 18-year-old self had been invited, and I would have asked her about it on Monday when I saw her at school.  But would I have gone? Probably not.

Unless she was a friend with whom I habitually spent time and not just an acquaintance. But was the guest list actually made up of Hallee’s friends? Or was the goal to get as many people there as possible? Was that goal Hallee Sorenson’s or her mother’s?

Either way, Hallee Sorenson ended up with a party that eighteen-year-olds weren’t likely to attend – regardless of her disability, the party was somewhat set up to fail. But we’ve all experienced disappointment (even six-year-olds, if we must go with the idea that she’s processing events at that level of cognition), and it’s important that everyone learn to deal with disappointment and realize that life goes on. I had a shitty twentieth birthday. I didn’t get a story on CBS. I survived.

But I wasn’t disabled at the time.

Because Hallee Sorenson Is Disabled…

…it was okay to take an embarrassing story of how no one came to her birthday party and put it up Facebook, along with her photo and mailing address, without her permission.

It was okay for media outlets to pick up the story, use images of Hallee Sorenson (without her permission, it seems), and talk to everyone but her about how she felt about the birthday party.

Cards and presents from strangers are seen as an acceptable substitute for the validation that Hallee would get from real relationships with her peers.

Don’t get me wrong. I don’t doubt that Hallee Sorenson’s cousin had totally good intentions when she asked the world to send birthday cards. And what parent wouldn’t want to do something, anything, to erase the memory of a birthday party where no one showed up? But how would any of us feel if we found out that we got a mountain of birthday cards because a family member put up a Facebook post asking strangers to send them and the news picked up on it?

“She’s going to see that a lot of people want to be her friend and want to wish her well,” her cousin told CBS in a phone interview.

I totally wish Hallee Sorenson well, but I’m not sending a card. I’m sure that she’s a lovely young woman, but I’m not her friend, and me sending her a card doesn’t make me her friend.  Me sending her a card does not mean that I’ll do “friend” things like visit her or call her on the phone, that we’ll get together to do things that we find fun, that we’ll be there to talk to each other when things get rough. It doesn’t even mean that she’d get a card from me next year when this story is long gone from the public consciousness and people have forgotten it was in June that they saw the sad story about the “heartbroken” autistic girl in Bangor  and sent a card so that *they* would feel a little less sad about what happened to her.  The idea of her getting thousands of cards believing that these people will be her friends makes me feel sadder than the idea of of people not showing up for her birthday. It was shitty of them not to RSVP and say that they were going to do it, but at least it was honest – if they’d wanted to be there, they would have come.

This card business is just a deception. No one would even have thought to perpetuate it on a non-disabled person because of all the liberties that they took with her image and her information (and shame on the media for going along with it). And what has been in the almost-year since Hallee Sorenson’s birthday to get to real issue of why people didn’t come to the party? Was it simply that the party was too much for children? Did they pick a bad weekend? Or was it deeper? Was Hallee having trouble with her peers? Did she need some social skills coaching?

Or were her social skills fine, but she needed to get better friends? Like, ones that would actually care about her enough to come to her birthday party, or at least enough to tell her why they couldn’t?

A friend of mine who *is* going to send a card said, “I just feel sad for her.” I do too. Hallee Sorenson didn’t ask for any of this – not the birthday party where no one showed up, or anything after.

Hallee Sorenson’s family is celebrating her birthday with a private family party this year. I hope that she enjoys it, and wish her many happy birthdays to come.

 

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FDA to Ban Electrical Stimulation Devices used at Judge Rotenberg Center – Public Comment Invited

Two years after a federal advisory panel met to discuss the Judge Rotenberg Center’s use of electrical stimulation devices in behaviour modification protocols, the Food and Drug Administration has announced its intent to ban the devices. This is something a lot of people (including a past employee of the Judge Rotenberg Center) have been waiting  a long time for.

Content Warning: Torture, Abuse, Aversive Skin Shocks

"JRC" in navy letters behind a red circle with a slash through it. Underneath. in black letters: "STOP The Torture! Close It!" Keyword: Judge Rotenberg Center

Image Description: “JRC” in navy letters behind a red circle with a slash through it. Underneath. in black letters: “STOP The Torture! Close It!”

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The Judge Rotenberg Center is a facility for children in adults with developmental disabilities. It is located in Canton, Massachusetts, and has been open since 1971. It employs a number of controversial behaviour modification practices, but the most controversial by far is the use of aversive skin shocks delivered via devices called Gradual Electronic Decelerators in response to self-injurious or aggressive behaviour. Judge Rotenberg Center is the only place in the United States that still uses aversive skin shocks to condition behaviour.

Judge Rotenberg stands by its use of aversive skin shocks as an alternative for individuals for whom no other treatment is working, and insists that individuals and their families depend on it. But significant questions surround the use of the practice:

This is just a partial list. For more, read my last post on the Judge Rotenberg Center or visit Lydia Brown’s blog.

The meeting of the federal advisory committee about the Gradual Electronic Decelerators and the aversive skin shocks was a chance for both those for and against their use to make a thorough case. The meeting was in front of the FDA, in order to help them make a decision about the GEDs and the use of aversive skin shocks.

Click here to read the transcript of the FDA meeting, including testimony by autism activists Lydia Brown and Ari Ne’eman

This 126-page report also came out of the investigation into the GEDs and use of aversive shocks.

Judge Rotenberg Center – If I Had My Way…

Even if you haven’t read my past writing about the Judge Rotenberg Center, if you know anything about me I think you can likely predict where I come down on the use of electric shock as behaviour modification on anyone. I’m not an expert on conditioning, but I know enough about it…and behaviour modification programs…and basic human rights and ethical treatment, for God’s sake…that I know that even when there seems like no other alternative, delivering a skin shock to get a person to stop an “undesired” behaviour is totally unacceptable from an institution that claims to be providing support services.

Totally fucking unacceptable and something that we should not be condoning implicitly or explicitly. I’d love to see the Judge Rotenberg Centre closed down tomorrow, and think it should have been closed down years ago.

Seeing them get their electric toys taken away?

It’s a damn good first step.

The FDA Wants to Hear From You

On April 25, 2016, the FDA issued its Proposal To Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior.   The Summary states:

The Food and Drug Administration (FDA or we) is proposing to ban electrical stimulation devices used to treat aggressive or self-injurious behavior. FDA has determined that these devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated by labeling. FDA is proposing to include in this ban both new devices and devices already in distribution and use.

This is not an official ruling. It’s a proposed rule that outlines why the FDA wants to bans electrical shock devices, and it’s very thorough – definitely worth reading, especially since the FDA is inviting public comment on the proposed ruling until May 25, 2016, with a specific request for comment on their proposed effective date. Comment can be provided in a variety of formats, and information on how to submit comment is listed on the Proposal.

If you have an opinion on this issue, now is the time to make it known! Remember, the Judge Rotenberg Center is presently the only entity affected by this ruling – when the electrical stimulation devices are banned, the facility cannot use them anymore. Ever.

Speak your mind to the FDA, and let’s get this chapter closed.

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Jim Carrey Tweets Picture of Autistic Youth Without Permission During Anti-Vaccination Rant

Canadians, who tend to be at least supportive of Canadian actors just because they’re Canadian, have always been a bit divided about Jim Carrey. He’s one of those “love him or hate him” actors. I’ve enjoyed a few of his films. I’ve not enjoyed more of them. A few of them I haven’t bother to see, I’m that convinced that I’d hate them.

Content Note: Anti-Vaccination Rhetoric and Autism, Exploitation, Dehumanization, Non-Apology
Cartoon. Woman with long red hair, wearing a nurse's uniform, sirs next to child with orangish hair, wearing jeans, a yellow sleeveless top, and sneakers. She is giving the child a needle. Keyword: Jim Carrey

Image Description: Cartoon. Woman with long red hair, wearing a nurse’s uniform, sirs next to child with orangeish hair, wearing jeans, a yellow sleeveless top, and sneakers. She is giving the child a needle.

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I don’t usually let an entertainment figure’s stance on an issue dictate whether I’ll see one of their films, with some exceptions. I had some serious issues with “The Passion of the Christ” and some of Mel Gibson’s public remarks, and now tend to avoid his work. I avoid some comedians because they use the R-word.

I knew that Jim Carrey’s stance on vaccinations being toxic is quite strong, but I don’t stop talking to people because they hold those views.  I didn’t see any need to boycott his films on that basis. And I still don’t.

But last week he took some the steps to get his anti-thimerosal/anti-mercury message out (Carrey insists that he’s not anti-vaccination, but against the addition of these substances in vaccinations) that crossed a line for me, and those steps have put me at “boycott” point.

Jim Carrey Uses Alex Echols’ Picture in Rant About California Vaccination Law

Upset by the law officially put into place in California last Tuesday that children must be vaccinated in order to attend school, Carey went on a 30-tweet rant about the chemicals in vaccinations, calling California governor Gerry Brown a “corporate fascist” and using images of children in distress, implying that the thermosil in their vaccinations had caused the autism.

“Salon” web magazine tells us the following about the pictures that Carrey tweeted:

  • Two pictures of crying boys were stock photos.
  • The third was of 14-year-old Alex Echols.

Alex’s picture was used without permission.

His mother, Karen Echols was very upset, and tweeted to Carrey:

“Please remove this photo of my son. You do not have permission to use his image.”

She explained later in an Instagram posting that Alex’s autism is caused by tuberous sclerosis and that he was showing signs of being autistic before he was vaccinated.

Jim Carrey removed the photo and apologized:

“I’d like to apologize to the Echols family and others for posting a pic of their kids w/o permission. I didn’t mean to cause them distress.”

I love a good non-apology.

Dehumanizing Autistic People

Cara (no last name given) nailed why Jim Carrey’s action were inappropriate in her blog post, ‘An Open Letter to Jim Carrey‘. She talks about how Jim Carrey used pictures of children in distress, one that we can confirm is autistic, hoping that they’d scare people into seeing his point of view, and his hopes that people would say, “Oh my goodness, we don’t want our children to turn out like *that*, we’d better not vaccinate!” She talks about how static pictures are inherently dehumanizing, and how autistic people as a group don’t need anything more that dehumanizes them – in the last five years, 80 autistic children and adults have been dehumanized by their parents and caregivers to the point where they’ve been murdered.

Kudos, Cara, for beautifully expressing why Jim Carrey’s actions were so wrong.

Cara touches on the other form of dehumanization that went on.

Shame on You, Jim Carrey

The picture of Alex Echols that Jim Carrey used has been used in a couple of media pieces. Is it fair use? I’m not sure. I wouldn’t use it without permission for a number of reasons, the least of them being that I figure that it’s been posted in enough places by now that Alex doesn’t ever need to come across it in another. But even if it is fair use, Jim Carrey did not use it fairly. He co-opted it for his own cause, with no concern for whether Alex and his family would be okay with that, and in his apology he didn’t say that he was wrong. That he can claim to be so passionately concerned for child safety but exploit a disabled child in that way makes me angry, and very concerned that he didn’t have that insight into why what he did was wrong until someone called him on it.

It was another level of dehumanization: “I’m just going to pick you up and drop you in my cause and I don’t care what you think about it.” Shame on you, Jim Carrey.

Yes, shame on Jim Carrey, because he didn’t have to go further than Facebook to see that Alex is a growing, learning, person, deeply loved by his family and support staff.  Because they’re better people than I am, the Echols family is grateful for the awareness that this incident with Jim Carrey has brought to tuberous sclerosis and to the challenges that Alex faces every day.

And he could only manage a non-apology on Twitter.

Learn More About Alex and his Family

Another Website About the Echols Family

Learn More About Tuberous Sclerosis and Autism