Trumpcare, Mental Health, and the Goldwater Rule

Back to politics today for  a moment…because there’s something I want to say, and because I’m struggling with something about Donald Trump and the Goldwater Rule.

Content Note: Ableism, Healthcare, Politics, Trump, Mental Health

Senator Susan Collins, a white woman with short red hair wearing a dark blazer, white blouse, and pearls, stands in front of an American flag background. Keyword: Goldwater Rule

Image Description: Senator Susan Collins, a white woman with short red hair wearing a dark blazer, white blouse, and pearls, stands in front of an American flag background.

Although I have Republican friends that I cherish in spite of our differences in opinion, regular readers know that as a group I’m hard on them. I’ve called them out, sometimes by  name (some have told me unfairly.) I don’t believe that I’ve been off-base.

But I also believe in giving credit where it’s due. So, to Senator Susan Collins of Maine and Senator Lisa Murkowski of Alaska, who’ve stood firm in this round of Obamacare repeal deliberations that what’s been included in the proposed repeal scenarios are not good for their constituents, despite bullying from Donald Trump, thank you. Thank you on behalf of my disabled American friends, and the children, families and elderly people of America that not only depend on Medicaid to keep them happy and healthy, but depend on it to keep them alive. Thank you for insisting that America be a country where everyone is taken care of. Your integrity and courage give me hope.

Senator Lisa Murkowski of Alaska, a white woman with short blonde hair wearing a red blazer, a write blouse, and a pendant on a chain, stands in front of some trees. Keyword: Goldwater Rule

Image Description:  Senator Lisa Murkowski of Alaska, a white woman with short blonde hair wearing a red blazer, a write blouse, and a pendant on a chain, stands in front of some trees.

Thank you also to John McCain, a man with whom I’ve definitely had my disagreements, who came to Washington in spite of his cancer diagnosis, right after brain surgery, speaking eloquently about bipartisanship and the need to work together to craft a plan for healthcare, pushing himself through the week and into the early hours of the morning last Friday night to cast the vote that brought down Trumpcare. Sir, I salute you.

Senator John McCain, a white male in his 70s with white hair wearing a navy blazer and blue dress shirt. stands against an American flag background Keyword: Goldwater Rule
MESA, AZ – June 4: Senator John McCain (R – AZ) appears at a town hall meeting on June 4, 2010 in Mesa, Arizona.

Image Description: Senator John McCain, a white male in his 70s with white hair wearing a navy blazer and blue dress shirt. stands against an American flag background.

I won’t ever forget what the three of you have done for my American friends.

And to the rest of GOP who are struggling with the idea of single-payer as an idea for health care in the US…on one level, I get it.

Didn’t think I’d say that, did you? Well, I’m nothing if not practical. Single-payer isn’t a perfect system. Not by a long shot. Are there wait times? There can be, for non-emergency issues especially. Is it bureaucracy-heavy? Not any more than the bureaucracy created by the American system having to deal with many insurance plans, I’d argue, but I could be wrong. But even though I waited a couple of months for the functional MRI that the AVM Clinic at Toronto Western Hospital needed to decide how to best treat my AVM, I didn’t have to worry about whether my family could afford to have one of the best neurosurgeons in North America specializing in AVM treatment rooting around in my head for 14 hours.

Take our system and make *your* single-payer system better. Show us up. In fact (if it’ll get you moving on this), I’ll bet that you can’t do it. Go ahead and prove me wrong.

Please! 🙂

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Now…why I’m struggling.

Donald Trump, Mental Health, and the Goldwater Rule

Last week, two friends who work in the mental health field, for whom I have a great deal of respect, said that despite their concerns about the Goldwater Rule, they firmly believe Donald Trump has a mental health condition and needs evaluation to determine whether he’s psychologically healthy enough to continue on as President. The American Psychoanalytic Association officially said recently that members shouldn’t feel restricted by the the Goldwater Rule when discussing Trump.

This is a tough one for me. I don’t like Trump at all, simply because I don’t tend to like people that are lying, arrogant bullies.  But I’ve fought hard against the idea that he’s unfit for office because he’s “crazy” because:

  • Even the most qualified mental health diagnostician would need time and access to Trump to make an accurate diagnosis
  • If the policy is that a clean bill of mental health is required to be the President, then Presidents as far back as Lincoln have been in violation
  • It’s ableist. There’s no reason that a President with a well-managed mental health condition should be treated any differently, in terms of perception of ability to govern, than a President with any other sort of well-managed condition.

And I think that ultimately I still believe that the Goldwater Rule should apply to the position of the President, provided that some other safeguards are put in place (because we do know that Presidents have had mental health conditions, and even degenerative brain conditions, that went largely unnoticed while they were in office):

  • Any President (not just Donald Trump) gets his or her mental health evaluated by an independent mental health practitioner on a regular basis. (I don’t know if this happens, or how often.) The Presidency is an extremely high-stress job, and it’s not unreasonable to periodically check at the very least whether that stress is having an adverse affect on the President’s well-being.
  • Concerns about the President’s mental health are treated like concerns about the President’s physical health – they are quickly, and thoroughly evaluated and, if necessary, treated. The President takes time off work if necessary, but the assumption is that he or she will be able to return to work, and that it will happen as soon as possible. The public is entitled to no more information than it would be if the President had a physical issue.

In other words: If the White House properly monitored the President for mental health conditions and ensured that if there were any conditions that were affecting the President so much that they interfered with his or her ability to govern that the President took time off (if necessary) and received the treatment and education needed to ensure that the condition was well-managed and no longer an issue…then I’d continue to stand on the Goldwater Rule and say, “It isn’t up to people who’ve never spoken to President to make a diagnosis. It’s up to the White House.”

But I don’t have that confidence in this White House. They can’t even make Donald Trump stop using his phone. They’re not going to convince him to let someone do even a simple mental health evaluation, or start treatment if that was deemed necessary – and Donald Trump is not a man that would step down. Not for the good of his health. Not even, I don’t think, for the good of his country.

So, I Struggle…

I’ve struggled as I’ve watched mental health diagnosticians openly break the Goldwater Rule since Trump’s election with their pronouncements in the media that he’s got any number of mental health conditions.

I struggle now, wondering if they were right to break the Goldwater Rule the way they did.

I don’t think that a mental health condition should automatically disqualify anyone from any job – I know too many people with well-managed mental health conditions that are in high-stress positions and that do an excellent job. But, like my friend said:

Whether someone agrees or disagrees with the content of his inflammatory statements, that is not the issue. This is not a matter of attributing mental illness because of disagreement with his views/statements. If you go back and view interviews with him from decades ago, he’s still the same big jerk, but his behavior has changed.”

It’s one thing to be a seventy-year-old civilian man with no insight into behaviour change and perhaps the need for help, and with apparently no one around you who will call you on that blind spot. It’s quite another thing when you’re the most powerful man in the world.

I think I know now where I land on this. If the White House won’t take action when there are indicators that the President needs treatment for a mental health condition, other people with experience and knowledge in the field of mental health need to be allowed to speak without fear of what it could cost them. It’s ableism to say, “People with a mental health condition can’t be President,” but it’s not ableism to expect Presidents that do have mental health conditions to work with their staff and medical team to manage those conditions so that their ability to govern isn’t affected.

To be clear:  Mental health professionals who are worried that Donald Trump isn’t competent to lead need the freedom to speak about it. Someone has to.

 

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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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Back to WordPress! With a Focus on Web Accessibility…

Well, I’m back to blogging. On my new WordPress set-up.

Here’s some advice to all of you bloggers and would-be bloggers out there: If you’re going to move your large blog off WordPress to another platform, be darned sure that you’re going to be satisfied enough with the new platform that you’re not going to want to move back. Because it’s very easy to move a large blog off of WordPress…it’s a hell of a lot of work to move it back on.

Especially if you’re committed to making your blog as accessible as possible.

Laptop with wheelchair icon in a yellow diamond sign, centred on the white screen. Keyword: Accessibility

Image Description: Laptop with a white screen. The wheelchair icon in a yellow diamond sign is centred on the computer screen.

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An Apology Re: Accessibilty

Despite all my talk about physical accessibility, I’ve historically not been very good about ensuring that the blog is as web accessible as it could be, and that’s not something that I feel good about. Until this summer I didn’t really know what it took to make a website accessible, but as someone who at least knew that it was possible for websites to have accessibility barriers on them that could be fixed, I should have taken the time to investigate my own site for barriers and fix what I could.

I’m sorry.

What Brought This On and Where I’m Going Now

This summer I took a course in auditing websites for accessibility. I know what the issues were on the old blog. I’m trying to clean them up on this blog, post by post. I moved from Medium partly because I didn’t have enough access to the code to do that.

I’m trying to clean up at least 5 posts a day, but this will take a little while. Give me until Labour Day. If after then you still spot accessibility issues – like photos without alt text or an image description, or uncaptioned videos (CNN videos are bad for having no captions) where there isn’t an option on the YouTube frame to turn them on and I haven’t provided a transcript, please let me know at admin@girlwiththecane.com.

And for those that have trouble seeing the self-hosted blog, I’ll still cross-post to Medium publication.

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Forgetting May 29th – My Stroke Story

I wrote this when I was hosted at Medium, because when I moved there I lost the page on which I’d posted my stroke story…but I thought I’d post it here again anyway. Enjoy!

Content Note: Stroke and Stroke Recovery, Arteriovenous Malformation (AVM), Unexpected Medical Problems/Surgery/Hospitalization/Disability, Brain Surgery, Privilege

Cartoon of a woman on the phone saying, "I got kicked out of the hospital today...apparently "Stroke Patients Here" didn't mean what I thought it did!" Keyword: Stroke

Image Description: Cartoon of a woman on the phone saying, “I got kicked out of the hospital today…apparently “Stroke Patients Here” didn’t mean what I thought it did!”

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 I realized two things last week:

  • The page that had my story on it didn’t travel over from from my WordPress blog when I moved to Medium.
  • May 29th came and went, again.

So as much as I don’t like talking about myself, I figured that I’d better put something up here on Medium about who I am and how I came to be here.

The story actually starts on November 7, 1999, when I had a small hemorrhagic stroke in the middle of a job interview in Parksville, British Columbia. I didn’t realize at the time that I was having a stroke; I thought that the sudden, intense headache was due to a migraine. I wouldn’t learn until that night, when I’d gone to the hospital because my neck was hurting and I was concerned that I had meningitis, that there was blood in my cerebrospinal fluid.

That’s bad, apparently. Bad enough that the hospital called my father in Ontario and suggested that he fly out. By the time he got there the next day, I was in a hospital in Victoria, and I’d been diagnosed with an arteriovenous malformation (AVM) in my brain that had started to leak.

AVMs, according to the National Institute of Mental Health are “abnormal, snarled tangles of blood vessels that cause multiple irregular connections between the arteries and veins.” AVMs can occur anywhere in the body, but brain AVMs are particularly problematic; they “damage the brain and spinal cord by reducing the amount of oxygen reaching neurological tissues, bleeding into surrounding tissue (hemorrhage) that can cause stroke or brain damage.”

My AVM had been with me since birth, but no one had any idea it was there until it announced itself when I was 22; because I’d not had a reason to have any imaging on my head done until it bled, no one had seen it. It would need to be treated, which could be done with radiation, embolization (inserting a special glue into the AVM via a catheter through the arterial network), or craniotomy (open brain surgery), depending on the AVM’s size and position. I could get treatment in Vancouver or Toronto. I chose to go back to Ontario to be treated at the AVM Clinic at Toronto Western Hospital. After looking at my films, the surgical team determined that with a 4% (non-cumulative) chance of bleeding each year, my brain AVM would almost certainly bleed again, and might cause damage next time. Their recommendation was to try and reduce its size with an embolization, and to then remove it via craniotomy.

Which brings us to May 29, 2000. Seventeen years ago.

I remember the night after the embolization surgery, but the days after the craniotomy are fuzzy. I’ve captured some of my first memories in Finger Spelling.

I remember the seizure that accompanied the stroke, a couple of days after the craniotomy, but I don’t remember a moment where I woke up and thought, “I can’t move my left side.” It was more a gradual realization that this heaviness was real and not going away — the doctors were evaluating my level of paralysis, and physiotherapists were coming in and tossing my arm and leg around, and sometimes people would adjust my arm because I’d moved and it was pulling on my shoulder because it had stayed where it was…

I needed help to sit up in bed, and help to lie down.

I needed help to get dressed and undressed.

Walking was out of the question. While the team tried to stabilize my seizures with IV medications, I was bedridden; the few times nurses got me up to sit in a chair by the window, I was exhausted within minutes.

Because I was now forced to use my non-dominant arm and hand, everything I did was painfully slow and inelegant: brushing my hair and teeth, eating, writing (when it was vital for me to do it).

I was in the hospital five weeks, and then I went to an inpatient stroke rehabilitation hospital. The transfer there was so stressful that I spent most of the first day vomiting. I yelled at my night nurse to leave me alone, because I was never going to walk again. I don’t remember that; I was told later.

Seventeen Years Later

I used to remember November 7 and May 29 every year, but now they tend to slip by me, unnoticed. They’re two more days where I do what I do: go to work, feed my cats, work on my writing, watch Colbert (taped; I’m trying to go to bed earlier), fool around on Facebook…

Some people call the day they had their stroke their “re-birthday” but that’s never made much sense to me. Nothing about me died to be reborn the day I had my stroke except some brain cells. I guess in that way I’ve kind of rejected the recovery movement as well, because I see so many people waiting until they’re “better” to live again, instead of constructing a life that they want to live as they’re getting “better”.

Not that there’s nothing wrong with working to make your weak side as functional as possible after a stroke, especially now that we know that the window for regaining function is much bigger than previously thought — after all, I’m still seeing very small gains in my hand over a long-term basis. But imagine if I’d sat around and waited to be sure I’d gained as much as I could in my left hand before learning to do things with my right hand? I would not be:

  • Living independently — making my own (albeit simple, but that’s okay — simple meals can be nutritious) meals, doing my own laundry and grocery shopping, taking care of my cats, keeping track of my finances, doing simple housework (I do have someone help me with housework), managing my healthcare
  • Working part-time in the community and part-time as a self-employed individual.
  • Travelling on my own — as close as Toronto (4 hr bus ride), as far as Mississippi (5 hrs by plane with a stop in DC on the way over and Chicago on the way back) and out to BC and back again by plane. Further with people with me.
  • Educating myself — Finishing up my degree in Psychology, completing the Developmental Services Worker diploma on campus at Loyalist College, completing technical writing training by distance from Simon Fraser University
  • Advocating for myself and other disabled people as an internationally-known disability activist.

Life happens as recovery happens, so might as well get prepared as soon as possible.

Dealing with Challenges

I still definitely face challenges. I was very lucky in that not long after I felt able to work, I got a great part-time job in my field that I found enjoyable and fulfilling. But I lost the job after few years because of funding concerns. Work has been difficult to find with my disabilities, and always part-time and low-security. I started writing the Girl With the Cane blog during a particularly long stretch of unemployment.

I’m learning that as I approach middle age, I’m not as resilient as I once was. I fell last winter and fractured my kneecap and I’m still experiencing a lot of pain. Several months later, I still can’t walk nearly as much as I’ve been able to in the past, which is very frustrating; not being able to at least walk to and from town and work like I used to feels like a big blow to my independence. I ask for help with transportation much more than I used to. I had a major seizure last September after being seizure-free for a few years, so driving is a few years off even if I could afford a car.

Even after 17 years, asking for (and accepting) help doesn’t come easily, but I work at it.

Canadian and Privileged

Despite challenges, I feel lucky to live in Canada, where my medical treatment and rehabilitation didn’t put my family into major debt and where getting income support and help to pay for my medications as a disabled person who couldn’t work was relatively easy (compared to what I’ve heard it’s like in the US). These systems aren’t perfect and I’ve heard real horror stories, but I’ve been fortunate.

Privileged, even — I’m white, straight, cisgendered, and able to pay my bills, with affordable health care (including dental, medicine and eye exams) with the means to access it. My family is supportive and loving. I’ve only ever felt unsafe a very few times in my life.

I’m very fortunate, and I try to always remember this as I do what I can to make the world better for those that haven’t been as lucky as I have. Some days it doesn’t feel like I can do a whole lot, but sometimes you don’t need to do a whole lot to make a difference in someone’s life. So I do what I can and hope it’s enough.

I’m looking forward to forgetting May 29 next year. 🙂

 

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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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Thoughts About the May 4th Vote to Repeal and Replace Obamacare

I watched far too much CNN last Thursday. But I couldn’t turn it off. I couldn’t believe that the vote to repeal and replace Obamacare was actually happening.

Content Note: Ableism, Healthcare, Politics

Headshot of Canadian Prime Minister Justin Trudeau (white male in his 40s with short, wave brown hair and blue eyes) looking thoughtfully into the camera. "Hey Girl, I'll Cover Your Preexisting Condition" is written across the picture in white block letters. Keyword: Obamacare

Image Description: Headshot of Canadian Prime Minister Justin Trudeau (white male in his 40s with short, wave brown hair and blue eyes) looking thoughtfully into the camera. “Hey Girl, I’ll Cover Your Preexisting Condition” is written across the picture in white block letters.

 ***

Watching from my privileged place here in Canada, where:

  • My mother spent six weeks in intensive care before she died of cancer
  • My father had surgery to fix the three breaks in his leg after being hit by a car and spent two months in a physical rehabilitation hospital
  • My twin niece and nephew were delivered by emergency C-section at 26 weeks and spent the next 3 months in the NICU
  • I had 2 brain surgeries to correct a congenital vascular malformation and spent 5 weeks in the hospital after the ensuing major stroke and nearly six months in inpatient stroke rehabilitation

…I reflect on how we only saw bills for ambulance service and records transfers…and think about where any of us might be if we lived in an America where Trumpcare was the law…and I am appalled.

Appalled

I’m appalled by the bill itself, although I’m fairly confident that despite making it through Congress, it’s dead in the water when it reaches the Senate. It barely got enough support from the GOP to squeak through the house. It *won’t* get the support from the Democrats that it needs in the Senate without major changes. Paul Ryan was so desperate to push this through that he didn’t wait for a ruling from the CBO about the cost of the bill and who it will affect (although we know that the CBO’s analysis of the first bill that Ryan failed to shove through Congress six weeks ago indicated that 24 000 000 people would ultimately lose their health care because of it.) Trump was twisting arms to get people to vote for it up until the morning of the 4th. Representative Chris Collins told CNN’s Wolf Blitzer that he didn’t even read the whole bill before voting “Yes” on it and he was not the only one.

Process-wise, this was a nightmare, and it will continue to be a nightmare for the GOP.

And for what? As Nancy Pelosi said on the floor of the House last Thursday, the people who voted for this will “glow in the dark”. The Democrats will make sure that everyone remembers who voted to repeal and replace Obamacare also voted take away health care for the Americans that need it most. Because I am furious on behalf of my disabled American friends, and scared for their future, here’s a list of who voted which way on the Trumpcare bill. Make the people who voted “Yes” glow in the dark for midterm elections in 2018.

What The Fight to Get Rid of Obamacare Is Really About

Obamacare sure as hell isn’t perfect. It needs to be fixed so that healthcare becomes and remains affordable and accessible for everyone. But it’s only in the minds of a group of Republicans who want to obliterate anything with Obama’s stamp on it that it needs to be repealed and totally replaced with something else, instead of tweaked so that the people who got healthcare coverage under Obamacare could keep it and so that coverage could become more affordable for those that are paying far too much for it right now. In their zeal to repeal and replace, with the bill they’ve presently voted on, they’ve thrown an alarmingly large group of Americans that includes the elderly, disabled people, people with cancer, people with mental conditions, people addicted to drugs, and women who have been sexually assaulted under the bus and pretty much said, “We don’t mind standing back and watching you die.”

According to the Kaiser Family Foundation’s list of pre-existing conditions that have universally been used to deny people insurance in the past, and that have raised premiums in the past, if I lived in US I’d be at risk of outright losing my insurance or a premium hike for factors that I can’t control, several times over. So would friends and loved ones, including my baby niece and nephew, who didn’t ask to be born three months premature.

Conclusion

I don’t believe that this bill will become law. But if it did, people who depend on getting health coverage through Obamacare would die. It is simply unfair that ability to obtain healthcare be tied to how much money you make. It’s more than unfair. It’s barbaric.

American friends, tell your representatives that when you call them — that the world is watching, we’re judging, and we’re using words like “barbaric”. Ask them if they can live with that.

Not sure what else to say about this right now. Just know that there are Canadians who are watching what’s going on and talking about it amongst ourselves, and that we will help however we can.

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Utilitarian Thinking and Ableism

Two profoundly ableist articles had the disability community buzzing last week. Because of their subject matter, scope, and implications, it feels like many more articles were released, but it really is only two.

Content Note: Discrimination, Infanticide, Rape, Rape Culture, Systemic Ableism

"Ableism" written in white block letters on a brick wall. Key word: Peter Singer

Image Description: “Ableism” in white, block letters across a brick wall.

***

The first article discusses ethicist Athur Caplan’s argument for a blanket policy that organ transplants not be granted when people have “disabilities that impair you so that you cannot have any quality of life.” He used being in a “permanent vegetative state” as an example, but conceded later that people with Down Syndrome should be eligible for transplants because “they enjoy life,” and “they contribute to their families, and their families enjoy having them.”

Well, that’s very gracious of him.

What I do like about Arthur Caplan’s article is that, while he does take a stance on his position with which I’m uncomfortable, he also puts out a call for dialogue about where the line at which organ transplant should cease to be granted (and while disabled people aren’t mentioned specifically, he does recommend that disability groups and the “transplant community” be involved), and a fairly comprehensive list of talking points. I think that disabled people and their advocates have plenty of talking points to add, but I’m going to get to that.

I think that this was one of the most important talking points on his list, from a paper by SD Halpern and D Goldberg that recently appeared in the New England Journal of Medicine: “Some healthcare professionals contend that cognitive function should not be a basis for allocating organs because it allows healthcare providers to decide that some lives are more valuable than others.” We know from the organ transplant denial cases involving Amelia RiveraPaul Korby, and Lily Parra that this is already happening.

I want to move on to the next article and come back to this one.

Peter Singer, Disabled People and Rape

The other article that grabbed the disability community’s attention this week was about philosopher Peter Singer’s recent editorial in the New York Times about the Anna Stubblefield case. Anna Stubblefield was a professor at Rutgers University when she had sex with a disabled student, D.J., and was charged with rape. She was convicted in 2015.

Nathan Robinson’s “Current Affairs” article about Peter Singer’s editorial is very good and should be read in whole. It shows how Peter Singer actually argues that in the court proceedings for the Anna Stubblefield case, D.J. was treated in an unfair and ableist manner. Writer Astra Taylor interviewed a disabled woman who was in the courtroom during the trial and who absolutely agrees with Peter Singer.

Robinson’s article doesn’t explain, however, why Peter Singer then couldn’t leave well enough alone and suggest that if a person is intellectually disabled to the point where they don’t understand consent, they can’t withhold it, and therefore they’d presumably enjoy sex whether it was forcible or not. D.J. couldn’t speak, but even if they presumed an intellectual disability, Peter Singer posits, he must have liked the sex because he wasn’t struggling.

It reminds me of the 2014 case in Georgia where Judge Christopher McFadden overturned the “Guilty” conviction for a man that raped a woman with Down Syndrome three times in 12 hours because she didn’t “act enough like a victim.”

As Robinson says:

“The New York Times therefore just published a philosophical defense of raping disabled people, and Peter Singer has — somehow — reached a new low on disability issues. (Actually, to be precise, an argument that it’s not clear what the harm is in raping disabled people, along with the implication that non-consensual sex acts against physically and mentally incapacitated people aren’t actually rape anyway if the victims do not know what consent is.)”

Peter Singer’s argument is disgusting, but not unexpected. He has in the past:

  • Debated whether it might be moral to kill disabled babies, and decided that in some cases it might be immoral to let them live.
  • Said he couldn’t raise a child with Down Syndrome because it wouldn’t make him “happy” not to raise someone that would be his “equal”.
  • Suggested that the lives of intellectually disabled people are worth less than those of non-disabled people.

Peter Singer is a utilitarian philosopher. It’s important to note that, not just because of the reasons (outlined by Robinson in his article) that utilitarian thought just doesn’t work well when you use it to discuss people, but also because it makes so many damn assumptions.

And we all know how much I love those.

Utilitarian Thought and Assumptions

Let’s go back to Arthur Caplan’s article for a moment.

Because there aren’t nearly enough donated organs to meet the demand for them, the approach to how people get them has always been somewhat utilitarian, to make sure that they go to people who need them the most, who will get the most use out of them, and who will follow the post-transplant regimen properly. It’s unfortunate, but difficult decisions need to be made when allocating scarce resources.

However, there’s an assumption at the foundation of Arthur Caplan’s argument that intellectually disabled people are in a different class than non-disabled people. Not only should their suitability depend on the practical criteria outlined above, but also on a determination that it’s worth keeping them alive to begin with: Do they “enjoy life”? Do they “contribute to their families”? Do their families “enjoy having them?”

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

If you could go along with Arthur Caplan’s reasoning and (apparently) believe that those criteria are even remotely fair to propose, how would we measure how well they’re being met? What evidence of being “enjoying life” would a transplant team be willing to consider? Who does a person have to make “happy” to be considered? What barriers to potentially enjoying life (or to expressing that enjoyment?) should be taken into consideration? What does it mean, to “contribute to a family”? Does family have to be biological, or could it be friends? Should those two types of families be weighed differently, and how? What about people who, through no fault of their own, have seen little or nothing of their families and haven’t had the chance to make that many friends (like those that have been instititionalized for most of their lives)?

Is it right to assume that, in the absence of information from the person, that just because they can’t have what a non-disabled person considers a good quality of life, that they’re unhappy and wouldn’t want their life prolonged by an organ transplant?

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

Peter Singer assumes that there’s no harm when an intellectually disabled person who doesn’t understand consent and doesn’t struggle is raped. He can’t know that. He can’t read minds. He assumes that a low IQ = no inner life. As a bioethicist, he should know better. His assumption that everyone responds to rape by struggling is easily refuted. I hope that by now someone’s made him aware of just how ignorant he sounded.

I’m willing to believe that Arthur Caplan actually wants to do some good, even if he’s misguided, but I suspect that Peter Singer is really just an ableist fuck who tries to use ethics to justify his positions. And I’m sorry that the New York Times saw fit to print his tripe without a balancing article correcting his assumption about how rape could affect an intellectually disabled person, and that advised that lack of consent doesn’t imply consent. Don’t have sex with someone if you don’t have their consent, period.

Bottom Line

As icky as these articles are, I’m not all that shocked by them.

I wish I was.

It’s just not a shock anymore to that these attitudes like these are still out there. It’s disheartening, though, to always come up as the option that’s not as preferable in these utilitarian reasonings, especially when the ableism is so obvious and especially when it affects resource allocation and safety on even as a hypothetical.

True equality still seems a long way off.

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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.

***

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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Jason Chaffetz, Health Care, and Privilege

CNN has been out at my place since yesterday, and I didn’t get a chance to get caught up on newsletters or internet because I was at work…but even from the little bit that I picked up about Trump’s new healthcare plan, I’m seeing problems.

Content Note: Classism, ableism, poor shaming, Trumpcare

Image Description: Red medical bag with a with white cross on it and a stethoscope resting on it. Keyword: Jason Chaffetz

Image Description: Red medical bag with a with white cross on it and a stethoscope resting on it.

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I like Obamacare. I was happy to see that so many people, particularly disabled people and people with pre-existing conditions, finally got healthcare. If I’d been American when my brain arteriovenous malformation was discovered, I doubt that any health insurance that my family could have afforded could have covered the cost of the surgery to repair it, let alone the cost of hospitalization and rehabilitation after the post-surgery stroke and the years of medical follow-ups. My surgery wasn’t emergency, but it was important — given that I was only 22 when my AVM caused my first brain bleed, it was likely to cause another, potentially much more serious one, but no one could say when. Would we, had we been Americans, decided to take postpone a costly surgery as long as possible, or not do it at all, and just hope for the best?

It might not have been an option. As a Canadian, I was able to make my decision based on the risks of having the surgery or not having it, and cost wasn’t a factor. Given that there was a 75% that they could treat the AVM with no ill effects, but later in life I might have another bleed while driving down the highway or holding a baby and potentially lose control of my left side, the choice seemed easy. I just hit that 10% that comes out of a major surgery in that area of the brain with severe damage, and that’s what happens when you play the odds. At least the AVM is fixed, and I didn’t have to worry about whether my healthcare was going to bankrupt my family.

I can work, but it’s complicated (ultimately because of my disabilities.) The jobs that I can do are usually part-time, low-wage, with no benefits. I’m one of the lucky ones — because I live in a low-rent building and because a government program covers the cost of my medications, I can still pay all my bills.

Jason Chaffetz, Healthcare, and Class Privilege

One of the bits about Trump’s new plan that I did hear yesterday (because it’s all over my Facebook feed) was the Jason Chaffetz interview with CNN. If you haven’t had a chance yet to hear the very definition of class privilege, take a listen (or read the transcript below the video, from 1:47 to 3:02):

Alisyn Camerota: What if it leaves lower-income Americans uninsured?

Jason Chaffetz: Well, we want them to be able to provide, have a method so that they can get access to it. There are things that we really do like, for instance dealing with pre-existing conditions, allowing people up to the age of 26 to —

Alisyn Camerota: You’re going to keep those tenets?

Jason Chafferz: Yup, these arbitrary lines of states —

Alisyn Camerota: Sure.

Jason Chafferz: So I think there’s a lot of good things that we need to —

Alisyn Camerota: But access for lower-income Americans doesn’t equal coverage.

Jason Chaffetz: Well, we’re getting rid of the individual mandate. We’re getting rid of those things that people said that they don’t want. And you know what? Americans have choices. And they’ve gotta make a choice. So maybe rather than getting that new iPhone that they just love and that they want to go and spend hundreds of dollars on, maybe they should go invest in their own healthcare. They’ve got to make those decisions themselves.

Alisyn Camerota: So, in other words, for lower-income Americans you’re saying that this is going to require some sacrifice on their part.

Jason Chaffetz: Well, we’ve got to be able to actually lower the cost of healthcare. I mean, one of the things we’re concerned about is healthcare inflation is just consuming the American budget, both for the families and and at the federal government. We have to be able to drive those cost curves down and provide good quality access. We do think that with more choice, that you will get a better product at a lower price, and that’s good for everybody on the entire spectrum of income.

Chaffetz goes on to say later that a potential outcome of the plan is more access, less coverage (3:54).

Let’s run down Jason Chaffetz’s assumptions about lower-income Americans and their lives, as indicated by this conversation:

  1. They’re frivolous and don’t make good spending decisions.
  2. They have money that they can put into saving for healthcare and just aren’t doing it.
  3. They should sacrifice even items that arguably aren’t even luxury (many people don’t use a land line anymore and depend on a cell phone) to bring down health care costs for everyone, when it doesn’t seem that he’s holding higher-income Americans to the same standard.

There’s also an implication that giving up that cell phone should be enough to provide people savings enough to get all the coverage they need, when the new plan has shown no proof of that so far. This tweet talks about the cost of a phone vs the cost of a young woman’s ankle surgery.

The GOP Doesn’t Like Low-Income Americans

It’s a relief that Trump has decided to keep the Obamacare regulations on pre-existing conditions and staying on parents’ plans until 26, and that he’s committed to making the plan portable across state lines. And when Jason Chaffetz went on FOX to further explain his comments, after social media exploded, he said that, “What we’re trying to say — and maybe I didn’t say it as smoothly as I possibly could — but people need to make a conscious choice and I believe in self-reliance. And they’re going to have to make those decisions.” That sounds much better than the plan he described on CNN.

However, I wouldn’t forget his words in that first CNN interview. GOP policies regarding low-income Americans tend to be punitive, assuming that all low-income people are either out to scam the system or irresponsible, and that higher-income people are deserving of better treatment. When we consider that the GOP also wants to cut Medicare, this healthcare bill as described by Chaffetz on CNN is all those things; even though he’s tried to walk it back, we shouldn’t be shocked if that’s exactly what Trump’s healthcare plan turns out to be.

The American Medical Association agrees that the current version of “Trumpcare” won’t provide adequate health care for vulnerable Americans. AMA President Andrew W. Gurman said in a press release about Trumpcare:

“The AMA supported health system reform legislation in 2010 because it was a significant improvement on the status quo at the time; and although it was imperfect, we continue to embrace its primary goal — making high-quality, affordable health coverage accessible to all Americans,” AMA President Andrew W. Gurman, M.D. said. “As drafted, the AHCA would result in millions of Americans losing coverage and benefits. By replacing income-based premium subsidies with age-based tax credits, the AHCA will also make coverage more expensive — if not out of reach — for poor and sick Americans. For these reasons, the AMA cannot support the AHCA as it is currently written.”

Other groups have joined the AMA in its stance, including the American Hospital Association and the American Academy of Family of Physicians.

I’m Worried

Canadian healthcare is far from perfect. Obamacare wasn’t perfect either. And I’m only learning about this new plan, and I’m willing to see how it pans out.

But I’m worried, even just after hearing Chaffetz’s CNN interview, that disabled people who can’t work and other groups living in poverty are going to suffer under this new bill. Please be prepared to fight for them.

They need your voice.

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