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Tag Archives | autism

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

cartoon of nurse giving a child a vaccinationCanadians, 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.

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 facist” and using images of children in distress, implying that the thermosil in their vaccinations had caused the autism.

According to Salon, two pictures of crying boys that were tweeted were stock photos. But the third was of 14-year-old Alex Echols, and was definitely used without permission. Alex’s mother, Karen Echols was very upset, and tweeted to Jim:

“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.

You can learn more about Alex and his family here and here.

More About Tuberous Sclerosis and Autism

 

 

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Juliette Beegle, 15, and Her Family Asked to Leave Airplane After Emergency Landing. Was It Because She’s Autistic?

Passenger plane flying above cloudsI’m sure that some of you saw this article about Juliette Beegle, the 15-year-old kicked off an United Airlines airplane with her family, ostensibly because she’s autistic. (This article is another good one that covers the story, and the comments are very interesting.)

I say “ostensibly” because the message board discussion that I’ve been watching on this story has had people point out that the call to have the plane make an emergency landing and have Juliette Beegle and her family disembark may have been made for a neurotypical person too.

Let’s take a look at Juliette Beegle’s story.

Juliette Beegle’s Story – The Basics

Juliette Beegle does not communicate using words, and her frustration levels can get high, especially if she hasn’t eaten. On the day in question, she hadn’t eaten before getting on the airplane, and didn’t want to eat any of the snacks that her mother, Donna Beegle, had brought. Sensing that acting-out behaviour (I don’t like the term “meltdown”) was imminent, and knowing that something hot to eat would calm Juliette down, Donna requested a hot meal from the flight staff. She was told that only first class passengers received hot meals, but that they could offer her a cold sandwich.

Donna and her husband explained what kind of acting-out behaviour Juliette might go into if she couldn’t get a hot meal, including that she might scratch lash out and scratch. The crew eventually brought a hot meal from first class, which calmed Juliette down. But not long after, the plane landed in Salt Lake City, and Juliette Beegle and her family were escorted off the plane. They were rebooked on another carrier (presumably at no cost to them) to continue their trip. Read more here

Juliette Beegle – The Discussion

The discussion that I’ve been watching about this has been very interesting. There’s been  acknowledgement among most of the participants that airlines in general seem to know very little about good (or even adequate) customer service for disabled people. As people who work outside the industry (most of us, anyway) we don’t know what kind of disability training airline employees get, but there are enough examples of it being seemingly absent in their dealings with disabled people that definitely make ableism in the airline industry a trend. Airports are becoming a bit more responsive to challenges involved with autism and flying by offering “dry runs” through airports for families, to help autistic family members to see what’s involved with flying and to help the rest of the family fine-tune the plan for handling the trip through the airport, but there’s still a long way to go.

There was general agreement that the captain and airline staff overreacted.

However, even from some participants that said this, there was another perspective.

For safety reasons, because of the age we live in, airlines are very cautious about everything right now. A woman who did have some experience with the airline industry pointed out that even a small request that deviates from normal routines, like serving a hot meal to a passenger that doesn’t normally get one when meal service isn’t on, keeps the staff from performing other functions that they need to be doing at that point in the flight and sets a dangerous precedent of “You made an exception for that person – why can’t you fill my special request?”

As well, the family basically threatened that Juliette Beegle may become violent if she didn’t get what she want. Autistic or neurotypical, that may have been a risk that the pilot felt that he/she couldn’t take.  After all, Donna said that Juliette would be okay if she got a hot meal, but what if that wasn’t the case? What if her frustration continued to escalate and she actually did scratch another passenger?

But, as another person asked, was it reasonable of the parents to expect that the airline could produce hot food for Juliette Beegle on a dime? Knowing that hot food was what could calm Juliette Beegle before she got to the point that she scratched, was it not up to them to either make arrangements with the airline to have use of the microwave and bring something on board that could be heated up, or to carry food on board in a container that would keep it hot the length of the flight?

Those sorts of questions need to be asked when any sort of person with special needs is traveling by air, not just an autistic person. I think it’s reasonable to expect disabled passengers to ask themselves, “What if there’s a chance that, due to my disability, I need something in the air that the staff may not be able to provide?” and to either do what they what they can to bring it on board (admittedly more and more difficult due to carry-on restrictions) or to call the airline prior to the travel date, explain the requirement, and see what can be worked out.

No one can plan for everything, of course. But I don’t think that in the moment when everyone’s guard is up is the moment to start explaining the finer points of autism and making what can come across as threats, as one of the passengers on Juliette Beegle’s flight talked about:

“Really I saw it as a threat to the airline and the flight attendants to say, ‘Well if we don’t get this, this is what’s going to happen,”

It’s an interesting perspective.

Juliet Beegle – To What Extent Do Airlines Have the Duty to Accommodate?

Should airline disability training include at least enough on autism so that if flight crew are alerted that acting-out behaviour is imminent and there’s something simple that they can do, like give a hot meal to a person that normally wouldn’t get one, that they should do it?

I think so. That’s pretty basic stuff. If the pilot and crew had received some autism training, they might have tried the first alternative suggested by the people who knew Juliette Beegle best sooner, seen her calm for a longer period and been satisfied that she was going to stay calm, alleviating the need to land the plane.

However, airlines need to take the potential for physical violence from anyone seriously, especially in cases where they can’t help so easily.  I think that the emergency landing and deplaning the family was probably an overreaction in this case, because Juliette Beegle’s parents were there to talk about how she normally doesn’t have issues with flying, how this trip had been different because she hadn’t eaten beforehand, and could vouch for how a hot meal generally calmed her – it wasn’t as if this was a passenger traveling alone who said, “I’m anxious, I need a hot meal or I might scratch people” with no other information to inform their decision.

It comes down to that idea of balancing everyone’s rights, which isn’t always difficult to do – but sometimes it really is.

Juliette Beegle – Do Disabled People Have a Responsibility?

I thought about this a lot.

I think that disabled people (or caregivers) need to be mindful that we have to know what it is that we need to function optimally and have a personal plan, to the greatest extent possible, for the times for the times, right or wrong, that we may not be able to get what we need.  I think that this is part of disability empowerment.

We also need to know how to identify when the way that people, trained or untrained, treat us crosses the line into unacceptable. As we saw from this case,  sometimes you can make an argument that a bad outcome is due to an institution’s decisions, sometimes you can argue that it was due to the disabled person’s decisions (or their caregiver’s), sometimes you can argue that it’s both…but sometimes it’s very clearly the institution’s (see this post by William Peace for examples involving airlines).

The discussion I was following on Juliette Beegle’s story got a lot into blame, but I don’t think I like looking at it like that. I think that there are lessons to be learned from it for the airlines and for travelers.

What do you think?

 

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Revisiting The Measles Vaccine Debate, in Light of Disneyland

measles vaccineApparently I need to blog about this measles vaccine business again.

It’s over a year since I talked about this, when there were small outbreaks in Canada and the US. The CDC reported 102 cases of measles at the end of January, most stemming from an outbreak at Disneyland in December.

No, it’s not a national emergency, although measles is “one of the leading cause of death in young children globally” (Read more here). The chances of a healthy person dying of measles in the US are fairly slim, as the majority of severe complications and deaths due to complications occur in developing countries with weak health infrastructure and children who are chronically malnourished. (Read more here). However, the chances are still a little too high for my liking: 1 or 2 infected children in 1000 will die, and up to 1 in 20 will experience measles-related complications. I know that a lot of people aren’t with me on this, but I consider measles a serious disease. Read more here.

I’m fully aware that many, many Americans got measles before the vaccine was routinely administered, as the disease is extremely contagious,  and survived it with minimal discomfort and downtime. Measles just used to be a part of life.

But it hasn’t been for a long time. The measles vaccine almost eradicated a disease that, for some that come in contact with it, is very dangerous. It can cause ear and chest infections, brain damage, deafness, blindness, pneumonia, and  encephalitis. Author Roald Dahl wrote about how his daughter Olivia died of measles encephalitis:

“Then one morning, when she was well on the road to recovery, I was sitting on her bed showing her how to fashion little animals out of coloured pipe-cleaners, and when it came to her turn to make one herself, I noticed that her fingers and her mind were not working together and she couldn’t do anything. ‘Are you feeling all right?’ I asked her. ‘I feel all sleepy,’ she said. In an hour, she was unconscious. In twelve hours she was dead.”

I know a mother whose son can’t have the measles vaccine because of a rare blood disorder, and she explained to me very carefully about how while the lack of a measles vaccine is always a concern, herd immunity protects people like her son. However, as fewer people vaccinate, herd immunity weakens, and puts even vaccinated people at risk, as the measles vaccination is only 95% effective.

Here’s a video about herd immunity, featuring some Gummi Bears…

Herd immunity is important, And this is why, blogging about the measles vaccine this time, I’m calling the crowd out that refuses to give it to their children.

The Decision Not to Give the Measles Vaccine Doesn’t Just Affect That Child

If a parent’s decision not to give a child the measles vaccine affected only that child, I’d be truly more than happy to let parents decide what they want. But that’s not the reality. A child who hasn’t had the measles vaccination is potentially dangerous to infants, the immunosuppressed, and other people who can’t have the measles vaccine for good reasons, including people undergoing cancer treatment…people who didn’t ask to be affected by the actions of those who refuse to to give their children the measles vaccine, and shouldn’t have to be. For people who refuse to vaccinate to insist that their right to go against the dictates of public health policy based on solid science should trump the rights of everyone else to to be in an environment that’s free of the potential to catch a disease with potentially serious health consequences is just selfish.

Yes, you parents who aren’t vaccinating your children against measles. You’re selfish. And if no one’s told you that yet, it’s about time that you heard it.

“But Autism”

I’ve read the reasons why parents aren’t choosing to get their children the measles vaccination. I’ve yet to hear a substantially-supported argument in favour of refusing to vaccinate, and this includes “Big pharma” and “toxins” and especially the “But autism” thing. In fact,  I’m flabbergasted at how often I’m hearing about people still refusing to vaccinate against measles because of the fear of their child getting autism.

In recent discussions on this, I’ve challenged on this ableist, “but autism” angle whenever I can, pointing out (as I did in my last blog post on this topic) that the studies that “linked” autism and vaccines were thoroughly debunked. I’ve pointed out that several times this week in discussions that making autism a “boogeyman” is a tactic of so-called “advocacy groups” with questionable ethics, such as “Autism Speaks”, and that many people autistic people would tell you that they’re perfectly fine with being autistic – it’s society that has the problem.

A friend did on Twitter said the other day, “As an autistic, the fact that so many people would rather have a child that’s dead than autistic child scares the shit out me.”

“Fucking Furious”

I didn’t realize until I read that, and started typing in response, “It makes me fucking furious, which is why I’m never going to stop fighting against this ableist ‘I’d vacccinate, but autism’ bullshit,” how angry about all this I really am (and I’m not autistic, so I can only imagine how autistic people must feel). Even if there was a remote chance that the measles vaccine could cause autism (which there isn’t), I’d rather take that remote chance, vaccinate, and know  that there was a 95% chance that my child would avoid the terribly contagious measles and anything more more serious that it might turn into.  I’m not a parent, but if I was, in this hypothetical world where vaccines once in a blue moon caused autism, I would without hesitation choose to do everything that I could to ensure my child stayed warm and alive in my arms, including vaccinate, rather than, God forbid, end up one of the few with a body that just cannot take the strain of fighting measles.

The Measles Vaccine – The Bottom Line

Forgive me if I cannot understand why a fear of autism prevents parents from giving children the measles vaccine, especially since it’s been proven that the two. Aren’t. Linked. Any children that I have will get the measles vaccine, to protect them and to protect others.

It’s as simple as that.

I’m sorry that I can’t be as diplomatic as I was last time. Discussions this past week have shown me that subtlety doesn’t get the point across with this particular issue.

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Hayley Bicker Spends “100 Hours in a Box” for Autism

hayley bickerDisability simulations leave me (and many other disabled people) cold. So I wasn’t really impressed by Haley Bicker’s “100 Hours in a Box” to raise autism awareness just on principle.

It’s not that, as Andrew Pulrang wrote recently, the people who use disability simulations to raise awareness aren’t (usually) well-intentioned. It’s that, as Emily Ladau wrote, they’re not really effective, they don’t have a whole lot of logic behind them, and they’re kind of insulting to disabled people anyway (read her wonderful essay here).

I’ve always seen participating in disability simulations as something akin to the mandatory 40 hours or volunteer service that the Ontario government makes students do while they’re in high school. It’s a well-intentioned policy, it’s certainly not a bad thing to make students do, and hopefully they get something out of it. But even if a student does all 40 hours in one year with an agency – by the end of 40 hours, they’re probably just only getting a sense of how things work and what they’d really like to do. It’s not a lot of time in which to get involved with anything in-depth. The same way, when someone sits, say, wheels themselves around in a wheelchair for a day, or has someone else wheel them around, how much can they really learn about the experience of having to use a wheelchair? To be honest, I don’t know whether you could fully appreciate what even the experience of living one-handed is like after just a day of it (unless you were willing to let me make you try a LOT of stuff).

But that’s not even why Hayley Bicker’s “100 hours in a box” rubbed me the wrong way.

Hayley Bicker Puts Herself in a Box

Hayley Bicker, upset by an incident in the shop in Britain in which she worked where no one offered to help a mother when her autistic child got upset to the point of physically acting out, decided to raise awareness about the sensory sensitivity and communication difficulties that can accompany autism. She did this by spending 100 hours in a large glass enclosure in the store, her objective being to show that the difficulties that she had hearing and communicating through the glass and the sense of isolation that these difficulties produced for her was what autistic children experienced every day.

First, let’s give credit where it’s due – Hayley Bicker saw something that upset her and went to great lengths to do raise awareness about it. She got a charity involved and raised some money that went toward buying support equipment for families with autistic children in her community. There’s no doubt that her heart was in the right place, and kudos to her for acting when most people would not have.

However.

Hayley Bicker and Why “100 Hours in a Box” Is Problematic

I’m not sure how Hayley Bicker’s disability simulation raises awareness of issues associated with autism when she was the one in the box. She already knew about the issues. I’m not suggesting that other people should have been in the box, because I think that the logic behind the whole thing was a little flawed to begin with, but the odd execution of this particular disability simulation arguably made it even less effective than standard disability simulations, to my mind.

I thought about this later, however. My initial reaction after hearing Hayley Bicker say, “This is what autistic children experience” in a television interview was that she’d missed a couple of more important ideas

  • You can’t (and shouldn’t) say what autistic people experience if you’re not autistic. I guarantee that if I said to someone who’s always had the use of both hands, “Make a list of what’s difficult for me to do on a daily basis,” her or she would miss things. Why wouldn’t that be the case? I’d not expect that person to be able to speak with authority on my disability, any more than I should be able to speak with authority on the experience of what someone with, say schizophrenia experiences on a daily basis. The difference between me and Hayley Bicker is that I would not presume that I could, even though I’ve learned about schizophrenia in school and know people who have it. Bottom line, if you don’t have a given disability, you don’t know what people who have it experience, and people like me get irritated when you presume that you do know what we experience.  Who knows, maybe you educated guesses based on reading or on observation or on experience with someone in your life who has that disability come very close to describing what they actually do experience, but you don’t know. I’m not as militant as I sound on this – even if Hayley Bicker had said, “I consulted with some autistic people before designing this” or “Some autistic friends have told me that this is what they experienced as children,” I’d be prepared to give her a lot more leeway.
  • Not every autistic person experiences everything the same way From what I understand of autism (acknowledging that I’m still very much learning about it), it manifests differently from person to person. Some people may struggle very much with say, sensory issues, some not so much. Even if the experience of being in a glass box perfectly described what communication felt like for one autistic person, it may not describe it well at all for another one. If we’re going to spread awareness, let’s do it accurately.

The glass box itself is also problematic. While I understand the point that Hayley Bicker was trying to make, it’s my understanding that autistic people are trying to get away from imagery that portrays them as shut in their own little world and unable to communicate with the rest of us. Who wants to be associated with the image of being boxed away while the world goes on around you? We’ve already got groups like Autism Speaks speaking of autistic children as “gravely ill” and equating them with children who have gone missing. Awareness initiatives need to emphasize as much as possible that autistic people (and disabled people in general) are contributing members of our families and communities, and that communication barriers are largely society’s constructions that society must remove. Enough boxes, separation and isolation.

If Not Disability Simulations, Then What?

Andrew Pulrang asked what the alternatives are to disability simulations. I think that one alternative is making sure that disabled people have the means, vocabulary, and opportunities that they need to talk to others about what being disabled is like and what it means to them, if they so desire. I’ve worked with disabled people that others have assumed aren’t able to describe what their disability experience feels like, and heard them do with a great of insight. But I didn’t hear this from them right away. They first needed to know that it was safe to express those thoughts to me.

I also think that we need to make sure that non-disabled need to know that it’s okay to ask, “Is it okay if I ask you some questions about your disability?” if they want to. Not that disabled people should feel obligated to say “Yes”, or that they have to answer every question that’s asked. But I think that non-disabled people want to ask questions, that they’re genuinely curious, and are often unsure about which questions are okay and which aren’t, or if questions are even appropriate. Personally, even though I’ve heard some questions from non-disabled people that definitely are too personal given the relationship between the two people, I would much rather that people ask and, if necessary, have to pleasantly say, “I’m going to pass on that, if you don’t mind, because it’s a little too personal, but is there anything else that you want to know?”

This way of learning about peoples’ disability experience through talking with each other may take some training and practice for both disabled and non-disabled people, but I like it much better than the idea of learning about disabilities through disabilities through disability simulations.

If you have ideas for alternatives for disability simulations, Andrew Pulrang is collecting them over on his blog.

What do you think? Am I being too hard Hayley Bicker?

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