Billy Bush Does First Interview After Release of Access Entertainment Bus Tapes

Excuse me while I get political. I’ve got some stuff to say about Billy Bush and…other things.

Image Description: Billy Bush, a white man in his late thirties with short brown hair, stands in front of greenery. He speaks into a microphone that someone holds in front of him. He's wearing a navy polo shirt.

Image Description: Billy Bush, a white man in his late thirties with short brown hair, stands in front of greenery. He speaks into a microphone that someone holds in front of him. He’s wearing a navy polo shirt.

Content Warning: Sexual harassment, sexual assault, Donald Trump, vulgar names for female anatomy, Access Entertainment bus recording, Roy Moore, Al Franken, Harvey Weinstein, Billy Bush

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There’s an interesting emerging trend in late night lately…if you want your side of a controversial story to be heard, book yourself on The Late Show with Stephen Colbert. First.  We saw this first when Anthony “The Mooch” Scaramucci departed the White House after just eleven days, before he even officially began his position as Communications Director. He thought he could bullshit Colbert. The results were awesome.

Part of the reason why Colbert has been so successful in his new role as host The Late show, I believe, is that he’s a very good interviewer – charming and engaging, but fair, and totally able to hold a person’s feet to the fire when the  occasion calls for it. I made it a point to watch Billy Bush’s “explain myself” interview on The Late Show, his first since his firing from NBC after the now infamous clip of him and Donald Trump talking on the Access Entertainment bus emerged doing the election.

The interview followed an op-ed by Billy Bush confirming that, despite Trump’s recent insistence that it’s not his voice on that recording, it is. Bush followed up in the Colbert interview, saying that he’d not only heard what he’d assumed had been a ” crass stand-up act, Andrew Dice Clay performance “(I’m old enough to remember Andrew Dice Clay’s standup, so I know the reference) , but seven other men on the bus had, and that it wasn’t him laughing on the tape, which he obviously felt had gotten lost in the coverage. Also:

“If I’d have thought that there was a man detailing a sexual assault strategy to me,   I’d have called the FBI, not just reported it to my executive producer…”

I narrowed my eyes, surprised at how angry I was. Because yeah, I totally agree that it sucks that Billy Bush lost his job because he was complicit in the bus incident while the guy that talked about grabbing women by the pussy is now running the free world. But something about how Bush talked about the incident really irritated me.

“Don’t let him off that easy, Colbert.” I said after Bush got done describing how Trump was a big NBC star at the time and how everyone had to “kiss the ring of The Donald.”

Colbert didn’t disappoint. “And where exactly was he wearing that ring at the time?” And he didn’t smile. He didn’t smile much at all during this interview.

Female friends and I have disagreed over whether Colbert was harsh on Billy Bush. One of my female friends saw an interview that was just designed to let Bush get his side of the story out. I saw that, yes, but I also saw an interview where Bush is held accountable for his behaviour. Colbert definitely got some jabs in. He makes Billy Bush relive the embarrassment of being fired from his job, including his feelings on being the one who lost his job over the bus incident, while Trump went on to become President after women actually accused him of sexual assault. Colbert even asks him to speculate on what Trump meant when he said, “I moved on her like a bitch” because it didn’t make sense to him. It all moves forward in a comedic way, yes, but there’s a subtext to it:

“If you want to tell your story, Billy Bush, you’re also going to have to tell us what you’ve learned.”

I do think that’s feasible and fair There’s no reason that an interview can’t be both an opportunity to get a story out and a push toward a broader point. I watch 24-hour news networks, and I see it happen all the time, in a lot less subtle manner than Colbert did with Billy Bush – and Colbert is not a reporter here. And kudos to Billy Bush for going on Colbert likely knowing that he was going to get some jabs. It’s no secret that Colbert can turn the screws when he wants to. After all, in Colbert’s previous life as host of “The Colbert Report”, politicians avoided being booked on his “Better Know a District” segment because he had a tendency to make them look foolish.

What Has Billy Bush Learned?

So what has Billy Bush learned? From my perspective, not a whole lot, but he did give some clues if you read between the lines of his answers: That he really wants to be a better man, one that doesn’t objectify women, one that, hearing today what he heard from Trump on that bus ten years ago, would instantly know that it was wrong and know exactly what to do about it. But I’m not sure that he knows how to start, and I know from hearing men talk and from hearing my female friends talk about what their male friends have said since the Weinstein story broke that he’s not alone.

Don’t get me wrong. There are good men out there who treat women well because they sincerely want to and believe it’s the right thing to do – they value women and their contributions, they talk respectfully about and to the women in their lives, and their actions demonstrate their commitment to making  women feel safe and respected in their presence, without expectation of reward. I was surrounded by men like this as I grew up. I was lucky.

But in adulthood I saw that there are a lot of broken men, too, products and purveyors both of a culture of toxic masculinity. Some know that they aren’t “nice guys” and aren’t interested in challenging their ideas of women. Some think that they are the good guys, and when they’re told, “Your behaviour tells me you’re not” will not believe it. Or maybe wouldn’t believe it until recently, and  now they’re having their eyes opened, and want to be better for the women in their lives…but legitimately don’t have a clue what they need to do.

They don’t know how to not treat a woman like an object. The Billy Bushes of the world are feeling truly lost.

And that’s scary to me as a woman, because that tells me that to achieve true equality between the sexes, the unlearning and relearning that men are going to have to do is so fundamental that just “discussion” and “dialogue” isn’t going to do it – there’s going to need to be a seismic shift in how both women and men look at themselves, each other, and the world.

So What Now?

I’m not exactly sure. I do think that this is going to be big and messy and hard to deal with for a whole lot of people.  I don’t think that any of us should assume that we’ll be exempt from asking tough question about ourselves and people around us.  I thought hard over whether I thought that Al Franken should resign after the recent allegations of sexual assault made against him, because I like Al Franken’s voice in the Senate about issues that are important to me. It was uncomfortable, taking a look at myself and my thoughts and what I’d being saying with my stance. I decided that Al Franken and Billy Bush are guys that are pretty much in the same boat in that they “get it” for the most part but still have some work to do, and that cleared things up for me.

The All Frankens and the Billy Bushes of the world don’t get a free pass for creating an environment that makes women feel unsafe, even if harm wasn’t intended.  It’s not the fault of the victims of sexual violation that society’s failure to work out its issues with women and power on a collective level has  caused some confusion in even men that appear to “get it” about women and respect and power . Even if they didn’t understand the effect of their actions, those actions have real consequences for the victims, and they need to have real consequences for the perpetrators.  In All Franken’s case, it’s too bad for for America because it means the loss of such a valuable voice in the Senate, and it’s okay for Americans to feel conflicted about that, I think. As one of my new favourite bloggers, The Rude Pundit, said on Twitter:

“It is possible to be both glad and angry that Franken is resigning. It’s just a sad fucking situation all around.”

But you can’t have it both ways, America. You can’t do this dance that I’m hearing some Democrats (badly) doing of: “Yes, we believe women, but we don’t want to be too hard on these guys either, because hey, we like them a lot…”

Meet Me at Camera Three, Democrats

Keep your own house clean, because you know…you know…that there are at least two Republicans who are more than well-meaning but a bit confused when it comes to this stuff.  Your President, who has allegations of sexual assault against him, has thrown his support behind Roy Moore, a man running for Senate who has allegations of sexual misconduct with teenagers when he was in his 30s against him. Not only that, he’s got a history of racism, homophobia, and anti-Islam remarks.

I said a while ago that I was going to be careful about what I write about Trump in this space. I’ve considered lately what I want to say. I think that I need to say…this…because it I think it’s one of the things that recent events have dictated *does* need to happen next:

I think that Democrats need to call loudly for Trump’s resignation, every damn day.

I mean, I can write here every day that Trump should resign, but I’m Canadian – I don’t count. *You* need to be pointing out the hypocrisy of the GOP, and what it says about Alabama, the GOP, and your President that apparently electing a Senator who’s been accused of sexual misconduct with a child  is preferable to electing another Democrat.

I’ve had three incidents since Trump took office where watching the news literally made me feel physically ill – two of them have been in the last two weeks, listening to the people of Alabama talk about why the allegations against Roy Moore don’t matter and why they’ll vote for him despite them, including pastors of churches. It’s simply gross that President Trump is in support of him as a Senate candidate – it boggles my mind.

Keep your house clean, and keep showing women who have experienced sexual violation that you are the party that will believe them and fight for them – insist that perpetrators in the GOP resign.

Even the President.

Every. Damn. Day.

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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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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Meryl Streep, We Don’t Need Your Outrage

I blogged about the incident where Donald Trump mocked disabled reporter Serge Kovaleski back when it happened during the primaries, and frankly I roll my eyes a little bit every time someone brings it up as “his most shocking moment” or something equally hyperbolic. If it’s online I leave a link to my blog post and move on. But I’ve just seen on CNN clips of Meryl Streep’s reference to the incident in her otherwise lovely speech at last night’s Golden Globes about the incident, and it truly pissed me off. So here I am.

Content Note:  Donald Trump, Bullying, Nothing for Us Without Us, Ableism

"No Thank You" against a cream-coloured background. A black pen sits to the side. Keyword: Meryl Streep

 

Image Description: “No Thank You” against a cream-coloured background. A black pen sits to the side.

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The captions are very good on this video. To access them, hit the icon on bottom of the frame (toward the right side) that looks like an index card.

While I agree that Donald Trump mocking Serge Kovaleski, and his refusal up to this morning to apologize for it, is crude and tasteless, and that, as Meryl Streep said, Trump does have more “power and privilege” than Koveleski, I take absolute exception to the idea that Kovaleski has “no power to fight back.” He could have spoken out about the incident when it happened. I’m assuming that he chose not to, but I don’t even like to speculate about that, because I’m tired of people assuming that they must know how he feels about the incident.

People have certainly been clear about how they feel, though, and the resulting narrative is that this incident was the lowest point of Trump’s campaign. Not his statement that Mexicans are criminals and rapists. Not his campaign promise to deport 11 million people. Not his proposed Muslim ban, or the comments about sexual assault, or the promise to repeal Obamacare (which will affect many disabled people.)

No, apparently it was the mocking of Serge Kovaleski (again, in extremely poor taste, but are we surprised?) Because he’s a disabled man, and because we all know that disabled people are powerless and can’t fight back.

I do get that Meryl Streep’s overarching point was that when the President bullies people, other people take it as permission to bully people. But I’ve fought hard (and am still fighting hard, with other advocates) to get society to see that disabled people are *not* powerless.

I am *not* powerless.

I do not let people like Donald Trump take my power.

And I don’t need the outrage of people who see me as powerless. Thanks anyway, Meryl Streep.

And you know what else I’m tired of, Meryl Streep? And CNN, for that matter? People not calling this gentleman by his name when they’re speaking about him. His name is Serge Kovaleski. He’s a Pulitizer Prize-winning journalist. Not “a disabled journalist” or “the disabled journalist”. Your outrage rings hollow when you can’t even be bothered to learn his name, especially when you’ve admitted that you’re reading a pre-written speech. Google is your friend.

Have a great day, everyone!

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Inspiration Porn: Once You See It, You Can’t Not See It

Content Note: Inspiration Porn, Ableism, Objectification, Work without Pay, Murder

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I talked to a lovely group of stroke survivors in my community last week about a variety of stroke and disability-related issues. I was very impressed with their insights and honoured to be asked to speak to them. I wasn’t surprised when they hadn’t heard of inspiration porn when the subject came up (I didn’t learn about it until I started blogging) but I was a bit surprised when a couple of people brought it up with me one-on-one afterward; it obviously struck a chord.

So, for those people from that talk visiting my blog for the first time (and for anyone else who’s curious) here’s a bit more about inspiration porn and how to spot it.

Inspiration Porn is a Media Depiction Issue

As I described the nature of inspiration porn to the group, a woman picked up on it right away.

“It’s about how the media depicts the story,” she said. We were talking about a story (a type of story that seems to emerge on an increasingly frequent basis) of a high school football player asking an intellectually disabled classmate to the prom. I’d been asked to talk about activism, so I pointed out that the disability community generally doesn’t like these sort of stories — they come across almost exclusively as praise for a non-disabled person bestowing a favour on a disabled person who obviously shouldn’t expect the privilege of attending a dance with a non-disabled date, or of attending a dance at all (even if the non-disabled student who asked the disabled student to the dance wasn’t thinking those things.)

History professor and disability scholar David Perry identifies 3 major categories of inspiration porn, usually involving people with Down Syndrome or another developmental disability:

  • Teenagers give disabled person some award or treat them especially nicely.
  • A high school sports team or athlete “allows” a disabled student to do something — usually to participate on a team in a way that non-disabled students do.
  • A disabled person “overcomes” their disability to do something where disability would seem to be an obstacle.

From what I could tell from her reaction to the discussion, another woman in the group felt that I was assuming an ill motive of the non-disabled people in these stories, which isn’t true and is very rarely true of inspiration porn. Perry agrees:

“In almost every case, I have no criticisms of the young men and women who are seeking ways to better include their classmates with Down syndrome or other intellectual disabilities. Teenagers…are good people looking for ways to be more inclusive. High-school kids must take such steps because too often, our education systems, recreation leagues, and society at large lack natural pathways for people with and without disabilities to compete, play, or develop easy social interactions with each other. My issue is with the reporting.”

It’s the reporting. And once you see it, it’s hard to not see it.

Why “Inspiration Porn”?

These stories are called inspiration porn because they operate (in the general sense) the way traditional pornography does — people (mostly non-disabled) use it for their own purposes (to feel inspired, to feel better about their lives, to feel better about the state of the world in general), and as that happens, people get objectified. These stories aren’t about the disabled people in them. They’re about:

  • How wonderful the football player is for asking the poor disabled girl to prom
  • How gracious it was for the basketball team to make a disabled boy’s dream come true by letting him take a shot at the basketball game
  • How inspirational it is that a woman in a wheelchair manages to get herself up, dressed, and on the train each morning to go to a job (even though she’s only doing what millions of people do every day); after all, she could just be sitting at home watching television all day like most disabled people do because they’re, well, disabled. And if *she* can get up each morning and get on with things, shouldn’t *you* be able to face the challenges in front of you with grace? At least *you* don’t have a disability, you quitter! Remember, the only disability in life is a bad attitude! (There are about 4 types of inspiration porn tropes in this last one.)

Disability activist Stella Young addressed inspiration porn extensively in a TED Talk, “I’m Not Your Inspiration, Thank You Very Much” that went viral in 2014:

It’s not wrong to feel good about stories of people helping each other. But inspiration porn is damaging — it reinforces negative messages about disability and puts a positive sheen on stories that appear feel-good but are actually very problematic. Let’s look at a couple of examples.

Ridge Quarles and Qdoba Restaurant

Disability advocates including me and David Perry read “Qdoba Worker Feeds Disabled Customer, Reminds Us to ‘Help Someone Every Day’” when it ran on the Huffington Post’s “Love Matters” page in May 2015 and declared it inspiration porn, even though it’s a nice story. A regular customer at a Qdoba Restaurant in Louisville, Kentucky, a female wheelchair-user that travels to the restaurant using a what sounds like city-run wheelchair transit service, asked then-employee Ridge Quaarles for some assistance to eat her dinner, which he provided. Good for him. It would be great if there were more people like Ridge Quarles, that will help when others ask them.

This story veers into inspiration porn in 3 significant ways:

  1. A customer was so moved by Quarles’ actions that he filmed the whole thing on a camera phone and posted it on social media — without the woman’s consent. The assumption that it was okay to do this reflects one of core characteristics of inspiration porn: the disabled person’s feelings about what happened don’t matter. The Huffington Post follows this up with their coverage: Quarles is interviewed, but the woman isn’t. She’s just the object that everyone acts on.
  2. The story is obviously meant to be heart-warming and inspirational, right down to Quarles’ statement on social media soon after the incident: “Today I had the honor to accept public acknowledgment for helping someone else in need. I’m very glad to have had the opportunity to impact lives around me. Go out and help someone today and pay it forward. Happy day everyone!” It’s a nice sentiment, but it’s again objectifying. Disabled people aren’t there to fill whatever need non-disabled people have — they’re people with opinions and stories and lives that don’t get explored in this type of reporting because they’re objects.
  3. The exclusive focus on the feel-good aspect of this story means that problematic elements are glossed over. Yes, a Qdoba employee did something very nice for a disabled customer on that day. Usually, though, the customer has to wait outside when she arrives at the restaurant for a customer to let her in, or a staff member to notice she’s there or let her in, because there’s no electric door — and she’d been coming there for 5.5 years when the article was published. No one from the Huffington Post apparently thought to ask why the restaurant is so glaringly non-accessible, or why staff knew this woman well enough that they knew what she’d order when came in, but not that she had at least some difficulty feeding herself. Isn’t part of this story that a disabled woman who could perhaps use some support to go to her favourite restaurant either wasn’t getting it or refusing it? But it doesn’t seem like reporters wanted to talk to her (or maybe they tried and she didn’t want to talk, but there’s generally a note when someone refuses an interview.)

Whoever the woman is, she wasn’t deemed important enough to include in the story in any way that gives her any personhood. And that sort of reporting is a giant step backward for disabled people.

Sam Forbes, “The Dancing Barista”

People loved media coverage of Toronto’s Dancing Barista, mainly by CTV and The Ellen Show (see video below.)

Again, I liked this…somewhat. It’s often difficult for disabled people to find work. As someone who used to try to to help young disabled people find work, it was great to hear a story about a young man finding a job that he likes so much, where things about him that he’d always considered deficits were assets being treated like a contributing member of the team. And it was a story about a friendship between a disabled person and a non-disabled person (the manager of the Starbucks, Chris Ali.)

And then the media came along, and this story became total inspiration porn.

  1. Like the woman in the Ridge Quarles article, Sam becomes an object — The Dancing Barista. His name isn’t mentioned in the CTV headline, or in the main headline of this Toronto Star article. Again, the majority of the comments on the video story on CTV News Go were explicitly for Ali for being a good person and hiring a disabled person (although Sam did get some kudos for doing the great job that he’s doing.)
  2. There’s definitely a sense, to me, of Sam becoming, through the media coverage, somewhat of a circus sideshow — come see the Starbucks barista who’s always dancing! — when the dancing serves an important purpose for Sam, who is autistic: It focuses him and makes him more able to prepare the drinks correctly, as he explained to Ellen Degeneres (see video below.) This isn’t about entertaining customers — it’s about Sam doing what he has to in order to do his job to the best of his ability, and having some fun at the same time. He is not an entertainment attraction. But is the story really about him?
  3. Like most inspiration porn, the feel-good aspect of the story sweeps problematic aspects under the rug. First, Sam told Ellen that he expected to be interviewed for this job — he knows that when you’re applying for a job, an interview is part of it. He was given the job without being interviewed — I imagine because he’s disabled. There’s no reason why, even if Ali fully intended on giving him the job, Sam couldn’t have gone through an interview. If I’d been Sam’s support worker, I’d have insisted on it, in fact. Second, Sam is not paid minimum wage. He’s paid only in tips. This is discriminatory, and says something about how much Sam’s work is *actually* valued in his workplace. I cannot think of a non-disabled 17-year-old who would work at Starbucks for tips, or parents that would tell their non-disabled teen that a job that pays them only tips is one that they should accept — but because Sam is disabled, it seems to be okay. Third, because Sam is disabled and he dances and it’s a whole “feel-good” story, Sam has gotten a trip to Japan and Ali has gotten the meet the Raptors. Very nice — but do we really want to reinforce the notion that disabled people are so special and so unlike everyone else, so difficult to incorporate into the workplace, that we should be rewarded with expensive trips just for showing up and managers should be rewarded for hiring us for tips? *These* are the stories that need to be covered.

But the mainstream media prefers feel-good and inspiration porn when it comes to disability, because the public really does eat it up. The critiques of stories like Sam’s tend to happen in the echo chamber of the disability community, because we’re criticized when we bring these things up more publicly.

Here’s Ellen’s video about Sam. Ellen has proven herself ableist (discriminatory toward the disabled) a number of times, which is why I don’t watch her much anymore. Notice, again, that we don’t see Sam’s name in the title — as if it’s of no importance.

“The Only Disability in Life is a Bad Attitude”

This quote has been showing up on motivational posters for years. People might recognize this one:

Paralympian Oscar Pistorian, wearing a white, sleeveless top and black, knee-length shorts, runs on blades on an indoor track next to a small girl with Down Syndrome, also wearing blades. She has blonde hair and wears a yellow sundress, and her blonde hair is in pigtails. The Scott Hamilton quote, “The only disability in life is a bad attitude” figures prominently. Keyword: Inspiration Porn

Image Description: Paralympian Oscar Pistorius, wearing a white, sleeveless top and black, knee-length shorts, runs on blades on an indoor track next to a small girl with Down Syndrome, also wearing blades. She has blonde hair and wears a yellow sundress, and her blonde hair is in pigtails. The Scott Hamilton quote, “The only disability in life is a bad attitude” figures prominently.

This piece of inspiration porn really gets activists going (and long before Paraolympian Oscar Pistorius was convicted of murdering his girlfriend, Reeva Steincamp).

Why do you think that activists have branded this image inspiration porn?

I wrote about it here in 2012.

Have a great day. Thank you again to my local Stroke Support Group for letting me be a part of your meeting last week!

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Ann Coulter Uses the Word “Retard” Again

When I heard that Ann Coulter, in a throwback to the 2012 election cycle (albeit a bit earlier in this time) had used the word “retard” again, I wasn’t going to write about it at first. But obviously I’ve changed my mind.

Content Note: Ableist slurs, Ableism, Donald Trump, US Election 2016

Headshot of Ann Coulter at the 5th Annual TV Land Awards - woman of indeterminate age with long blonde hair and blue eyes, smiling into the camera. Keyword: Ann Coulter

Image Description: Headshot of Ann Coulter at the 5th Annual TV Land Awards – woman of indeterminate age with long blonde hair and blue eyes, smiling into the camera.

***

In 2012, after a Presidential debate, Ann Coulter tweeted “I highly approve of Romney’s decision to be kind and gentle to the retard”, in reference to Barack Obama, and I said that I was “shocked.”

I’m not shocked this time around. I’ve heard her talk a lot in the last four years.

This time, she was defending Donald Trump’s mocking of disabled reporter Serge Kovaleski. In her new book, In Trump We Trusts, she writes (as reported by theslot.jezebel.com):

“Trump denied knowing that Serge was disabled, and demanded an apology, saying that anyone could see his imitation was of a flustered, frightened reporter, not a disabled person. It’s true that Trump was not mimicking any mannerisms that Serge has. He doesn’t jerk around or flail his arms. He’s not retarded. He sits calmly, but if you look at his wrists, you’ll see they are curved in. That’s not the imitation Trump was doing—he was doing a standard retard, waving his arms and sounding stupid: “’Ahhh, I don’t know what I said—ahhh, I don’t remember!’ He’s going, ‘Ahhh, I don’t remember, maybe that’s what I said!’”

Even if I chose to overlook her use of “retard” and “retarded”…it’s a terrible argument, and Ann Coulter knows it.

Call Her What You Want – Ann Coulter is a Smart Woman

Check out Coulter’s biography. She’s a corporate lawyer. She worked for the U.S. Senate Judiciary Committee, for God’s sake. She’s a best-selling author and columnist and a respected Conservative pundit, and you don’t get to her level in the right-wing media when you’re a woman unless you’ve got some major brains in your head.

Granted, Coulter was fired from MSNBC (twice) because she’s so controversial. Personally, I think most of her expressed opinions are disgusting. But I’d bet money that a lot of her bluster is just that – bluster. She’s worked hard to get to the top and she knows that the more she can shock people, the longer she’ll stay there. The people that are buying In Trump We Trust aren’t going to be bothered that she used the word “retard”. She’s hoping that you’ll be bothered enough that you’ll buy the book to see what else she’s said, or that you’ll at least talk about this one page in her book long enough to keep her in the news a little longer so that her fans who haven’t heard about her book will buy it.

And yes, I do realize that I’m contributing to this by writing this blog post. But:

  1. I’m not going to get into the number of people that access this blog in a day, but this post isn’t going to be what keeps Ann Coulter in the news.
  2. The people who consistently access this blog aren’t likely to go out and purchase Ann Coulter’s book even out of morbid curiosity.

Bottom Line

Ann Coulter is a shock jock, and she plays that game really well.

Each time she says “retard”, she knows what the response will be, and she’ll only use it as “evidence” to support her Trump-ish narrative that America is too politically correct and that people can’t speak their minds for fear of the “thought police” coming after them. I’ve been hearing this narrative for years, and it irks me. I’m not in favour of “silencing” anyone – people should feel free to say what they want. But word choice has consequences, so people should ask themselves, “Am I willing to live with the consequences?” before tossing around words like “retard” like they don’t have any historical context and emotional weight behind them.

Apparently Anne Coulter feels so strongly about using shock value as a way to stay in the spotlight that she’s willing to live with the personal consequences of using ableist language (not to mention racist, classist and sexist language) in her speech and writing. And that’s her problem. Not yours. The best thing you can do is continue to let her know that there are consequences to using language that’s hurtful to other people.

Ann Coulter – Here’s What You Can Do

You’re not going to change Ann Coulter. But here are some things you *can* do:

  • Refuse to even read her books (let alone buy them) and tell people why.
  • When people bring up her theory that Donald Trump wasn’t mocking Serge Kovaleski, tell them that it’s a load of crap and explain why (it’s not that difficult; just go over the paragraph I cited.) Be sure to include that she should know herself that it’s a load of crap, since she’s a corporate lawyer and can presumably spot a poorly-constructed argument.
  • Continue to explain to people why “retard” is hurtful and why people get upset when celebrities use it. Mention that she’s a frequent and unapologetic offender.

But at the same time, don’t let her hateful rhetoric rent space in your head.

You’ve got much more important things to think about than the ramblings of a woman who feels irrelevancy nipping at her heels.

 

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“Star Trek Beyond” Writers Make Sulu Gay Despite George Takei’s Objections

So there’s an interesting debate going on about the new Star Trek movie, “Star Trek Beyond”. The movie’s writers and series original George Takei are disagreeing about how the Hikaru Sulu character is portrayed, and fans are clearly divided on it. I wasn’t sure how I felt about it myself, at first.

But I know now what’s made me so uncomfortable and why.

Content Note:  Nothing for Us Without Us, Racism, Homophobia

George Takei publicity shot - Asian man in his 70s, dressed in a blue suit and blue dress shirt, smiles at camera and makes Star Trek "Live Long and Prosper" sign with his right hand. Keyword: George Takei

Image Description: George Takei publicity shot – Asian man in his 70s, dressed in a blue suit and blue dress shirt, smiles at camera and makes Star Trek “Live Long and Prosper” sign with his right hand.

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About the Original “Star Trek”

The original “Star Trek” series only ran for three seasons, but it was remarkably progressive on several front. The Lieutentant  Nyota Uhara character, played by black actress Michelle Nichols, was not only the first black major character on a network series, but was part of the command crew on the Enterprise’s bridge – black, a woman, and fourth in command of the ship. When she was considering leaving the show, Dr. Martin Luther King Jr. told her that she had to stay, saying, “For the first time, we are being seen the world over as we should be seen.” The Uhura character was also part of the first interracial kiss on television, when she kissed Captain Kirk in the “Plato’s Bridge” episode.

So the show literally explored new frontiers. But sexual preference wasn’t one of them, and it was ultimately because “Plato’s Bridge” and the kiss were so poorly received; Roddenberry supported LGBTQ equality, but felt he had reached the line of what the American public was ready to accept from network television, as he discussed with George Takei (not openly gay until 2005) at the time.

The writers of “Star Trek Beyond”. in the name of diversity and as an homage to George Takei as “a sci-fi icon and beloved LGBT activist” have made Sulu’s character gay in this reboot of the original series. And George Takei’s reaction was unexpected:

“Except Takei wasn’t overjoyed. He had never asked for Sulu to be gay. In fact, he’d much prefer that he stay straight. “I’m delighted that there’s a gay character,” he tells The Hollywood Reporter. “Unfortunately, it’s a twisting of Gene’s creation, to which he put in so much thought. I think it’s really unfortunate.”

Takei explains that Roddenberry was exhaustive in conceiving his Star Trek characters. (The name Sulu, for example, was based on the Sulu Sea off the coast of the Philippines, so as to render his Asian nationality indeterminate.) And Roddenberry had always envisioned Sulu as heterosexual.”

Takei wondered why a new character that was gay wasn’t introduced, instead of making his character gay, and after a discussion with John Cho (who plays Sulu in “Star Trek Beyond”) and director Justin Lin, and an email from Simon Pegg (one of the wo-writers and the actor protraying Head Engineer Montgomery “Scotty” Scott) was under the impression that the creative team had decided to change course and take this route:

“‘I really tried to work with these people when at long last the issue of gay equality was going to be addressed,” Takei says. “I thought after that conversation with Justin that was going to happen. Months later, when I got that email from Simon Pegg, I was kind of confused. He thinks I’m a great guy? Wonderful. But what was the point of that letter? I interpreted that as my words having been heard.'”

Simon Pegg was so surprised by George Takei’s reaction to making Sulu gay in “Star Trek Beyond” that he felt moved to approach the media and express with his disagreement with Takei’s criticism. His points included:

  • Concerns about tokenism
  • Sulu’s sexual preference would be another aspect of a character of a that the audience already knows, not *the* defining aspect of a brand-new character
  • Concerns about timeline issues – “…the audience would infer that there has been an LGBT presence in the Trek Universe from the beginning (at least in the Kelvin timeline), that a gay hero isn’t something new or strange. It’s also important to note that at no point do we suggest that our Sulu was ever closeted, why would he need to be? It’s just hasn’t come up before.”
  • Since the Roddenberry’s decision not to explore sexual orientation in the original show was due to the time in history, and not an artistic one, it’s appropriate to do so now.
  • The decision shows that there are LGBTQ people everywhere – through time and across timelines, and it sends a positive message.

The thing is, from what I’ve read of the way that George Takei responded to the decision, I don’t think that he disagrees with most of this. All media accounts indicate that he’s was happy to include a gay character in the movie. He just didn’t want it to be his character, who he played as  heterosexual despite the fact that he’s a gay man, for a number of reasons besides the ones cited earlier:

  • He doesn’t believe that a gay man in the 23rd century would ever be “closeted”, the way he was in the original series. The Hollywood reporter notes that this creates some timeline issues, and I don’t understand the reasoning – it apparently touches on issues of the reboot’s timing in relation to the original story’s, and I didn’t realize that there was an issue here. I thought that the reboot was simply a re-imagining of the original series? Maybe someone can explain this to me.
  • He felt it would be better for the film’s gay character to have an acknowledged history of being gay.
  • This year is the 50th anniversary of “Star Trek” and Takei feels that this movie should honour Roddenberry’s original vision

This debate, in the large sense, sounds familiar to me, and I don’t like it.

Thoughts on George Takei, Sulu, Acting and Being Heard

I’m an actress. Not recently – it’s been quite some time since I’ve been on the stage. And I never played a part for as fraction as long a time as George Takei did Sulu, so I can only imagine how he must have felt about that character after all the development, the rehearsing, and the hours of shooting. I got attached to my characters after playing them for only very short runs on a stage in front of a small audience. Sulu was the character that launched and drove George Takei’s career, that made him an internationally-known name – he’s played Sulu for long periods off-and-on for 50 years.

And then some straight people (admittedly it’s an assumption that John Cho and Simon Pegg are straight, but they are both married to women and nothing in the media suggests that they are gay) come along and tell Takei that they’d like to change something major about the character.  As an homage, they say. They’d change an element of Sulu’s character that is very personal and life-defining for anyone, especially so for Takei given his personal life experience.

I would have said “I’d prefer that you didn’t,” as well.  And it’s not as if George Takei wasn’t open to the idea of a gay character in the movie and didn’t offer some thoughts on what he, as an original cast member and a gay man, would prefer to see.

But the writers, who weren’t even born when the original “Star Trek” aired, decided that they knew better than George Takei about:

  • The original “Star Trek” and Roddenberry’s vision
  • George Takei’s discussions with Roddenberry about addressing issues around sexual preference on the show
  • George Takei’s experience developing and playing the Sulu character
  • George Takei’s experiences as both a closeted and openly gay actor in Hollywood over decades

They decided that the input of George Takei,  who’s lived several types of experiences related to Sulu and his development and portrayal over 5 decades, wasn’t valuable given the narrative that they wanted to push (as straight people who weren’t involved with the original show at all) so they disregarded what Takei said.

And expected that he’d be honoured by it.

George Takei said himelf, “I interpreted that as my words having been heard,” but they obviously weren’t.

Members of the disability community, does any of this sound familiar?

And obviously George Takei might not feel these things about the whole business. These are just things that struck me, and made me think, “Well, all of that sounds very invalidating.” That’s through my filter – I don’t presume to know how George Takei feels, I can only speculate on how I’d feel in the situation, knowing that this sort of experience is a common one for disabled people – decisions about the things that are important to us get made without our input, and even when we’re asked we often end up feeling unheard.

Again, my filter – you might not see it this way, but if you’re not disabled then we’ve got some different life experiences, and I might not pick up on some things that you pick up on…

Bottom Line

I love the original “Star Trek”, I’ve enjoyed this movie reboot of the story, I’m all for diversity on the big screen and I’m thrilled to see the “Star Trek” franchise continue to push the limits.

I’m just a little disappointed by how this particular issue played out. How about you?

 

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“The Fundamentals of Caring”: Movie Review

So, this past weekend I watched “The Fundamentals of Caring” on Netflix, with more than a little trepidation (even though one of the stars is Paul Rudd, one of my favourite actors.)  This post contains major spoilers for that movie, so considered yourself warned.

Content Note: Ableism, Internalized Ableim, Cripping Up, Stereotypes, Caregiver Issues

"Fundamentals of Caring" movie post: Dark-haired man in a green sweater, hands shoved in his pockets, stands back-to-back with a young woman with long, dark hair in a dark orange jacket. A young man in a wheelchair with curly dark hair, wearing a brown jacket and pants and a green scarf sits between them. "The Fundamentals of Caring" is written just above them in dark green. All against a light green background.

Image Description: “Fundamentals of Caring” movie post: Dark-haired man in a green sweater, hands shoved in his pockets, stands back-to-back with a young woman with long, dark hair in a dark orange jacket. A young man in a wheelchair with curly dark hair, wearing a brown jacket and pants and a green scarf sits between them. “The Fundamentals of Caring” is written just above them in dark green. All against a light green background.

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I say I watched this movie “with more than a little trepidation” because Hollywood doesn’t tend to “get it” when it comes to movies about disabled people, and because The Guardian’s review of “The Fundamentals of Caring” savaged the movie – not specifically because of its portrayal of a disabled person, but because the film is conceptually tired and very predictable: quirky people bonding/learning about themselves/breaking out of maladaptive patterns and transforming their lives on some journey that involves a a road trip at some point, a la films like “Little Miss Sunshine” and “Garden State” (both, like “The Fundamentals of Caring”, films that debuted at Sundance.) It’s a dying genre, the review notes, and the films that currently represent it either have to have a lot of star power to get going, or leads with great chemistry (which Rudd and actor Craig Roberts, who plays disabled Trevor, have in spades).

The Guardian is right about these things. “The Fundamentals of Caring” is basically predictable, at least in some ways. I really liked “Little Miss Sunshine” (I don’t remember a lot about “Garden State”…Zack Braff, I think?) so I could live with the “life-changing road trip” trope. I actually liked the way it was used in “The Fundamentals of Caring”. But what I liked even better was the way that the movie dared to show a person (a young adult – Trevor has advanced Duchenne muscular dystrophy, uses a wheelchair, and requires a significant amount of assistance with activities of daily living) who’s really just an asshole. Not an irredeemable asshole, but the sort of smug, late-teen smart ass who thinks that faking that he’s choking on a bite of Slim Jim and scaring the shit out of his caregiver is hilarious. And it also dared to show a relationship where when the disabled person is an asshole, someone calls him on it.

That’s just refreshing. Because, despite what we’re told by movies and television and writing that calls disabled people angels and implies that they’re perpetually happy and joyous and “incapable of deception” (direct quote from a person in my town about a person with Down Syndrome), some disabled people are miserable to be around, and disability does not give them a free pass when it comes to treating other people miserably.

Let’s take this example between Trevor and and his new caregiver Ben (Rudd), where Trevor is deliberately trying to get under Ben’s skin.

Trevor: Who do you think would win in a fight to the death? Me? Or a bird?

(Ben stares at the TV, looking pained)

Trevor: How about me versus a lot of birds, but all the birds had muscular dystrophy?

Ben: I think a bunch of birds with muscular dystrophy are fucking you up.

We don’t expect disabled people to be assholes. We don’t expect non-disabled people in particular to dare to actually say something about it (because disabled people have it so hard already that non-disabled people should just overlook it if they’re impolite or mean, right?) The subversion of the expectations is both jarring and humourous, and carried out very nicely by Rudd and Roberts.

Not that “The Fundamentals of Caring” doesn’t have flaws besides being predictable.

Some Issues With “The Fundamentals of Caring”

Craig Roberts isn’t disabled, which sticks in the craw of most disability advocates (and rightly so). If you’ve never heard this argument and can’t see why this is upsetting, consider how offensive society would find it if a black character was played by a white actor in blackface, as Dr. Frances Ryan wrote in The Guardian after actor Eddie Redmayne won the Golden  Globe for his portrayal of Dr. Stephen Hawking in “The Theory of Everything”. Leading roles in movies are already at a premium for talented disabled actors, and they can’t even get them when they come along. It’s a much bigger issue than people think, and it gets barely any attention in the mainstream media. If you doubt me, think about the major movies featuring disabled characters, think about the actors who played the characters, and think about the awards they got:

  1. “Rainman” – Dustin Hoffman gets Best Actor Oscar for portrayal of autistic man
  2. “My Left Foot” – Daniel Day Lewis gets Best Actor Oscar for portrayal of man with cerebral palsy
  3. “A Beautiful Mind” – Russell Crowe gets Best Actor Golden Globe for portrayal of John Nash, a schizophrenic professor and economic theorist.
  4. “The Theory of Everything” – Eddie Redmayne gets Best Actor Golden Globe for portrayal of Stephen Hawking
  5. “Ray” – Jamie Foxx gets Best Actor Oscar for portrayal of Ray Charles

So, this is an issue.

Other issues include Ben’s caregiver technique. Granted, I don’t know the standards for lifts and transfers in the US.  But I was taught that safely lifting even a older child, say,  from a bed to another surface requires either two people or a mechanical lift, or you’re risking dropping the individual on the short term and back damage on the long term. It’s not totally clear what Trevor’s age is meant to be, but he doesn’t attend school, so presumably he’s at least 18 and fully grown – Ben should not be lifting him alone. Picky point? Maybe. But I wouldn’t want to be a wheelchair user in trouble somewhere and have someone assume that it’s okay to try to lift me unassisted because he or she saw it done easily in a movie.  It’s not safe.

Nor would I want people assuming that the solution to an accessibility issue is to have people push/pull a disabled person in their electric wheelchair up a flight of stairs.  That is absolutely not something to be modeled for comedic value.

And there were plot points that made me :headdesk:. We learn, once Ben approaches Trevor’s mother with the idea about the road trip to see the World’s Deepest Pit, that Trevor has never been more than an hour from his house. I truly almost cried.

But then I thought, “What a discussion-generator!”

Discussion Questions for “The Fundamentals of Caring

I don’t know if the people involved in “The Fundamentals of Caring” intended to pack it as chock-full of jumping off points for discussion as they did, but here are the ones that occurred to me as I watched:

  • Name some media stereotypes of disabled people in this movie, and some stereotypes of disabled people generally. How does Ben react to these stereotypes? The hitchhikers? Trevor’s family? Other characters?
  • Comment on Trevor’s mother. Is she ableist? Does she realize it? Why can’t she see that she’s ableist, or why does she continue to act in an ableist manner if she can see it?
  • Are there other ableist characters or examples of ableism in the movie? Is is deliberate?
  • Does Trevor have some internalized ableism? Why or why not? If so, what contributed to it? What contributed the most to it?
  • Comment on Trevor and the idea of dignity of risk. Who was the most scared of the idea of Trevor going on a road trip? Why do you think that was?
  • Comment on Trevor and the idea of self-determination. Even though it’s hard to deny that the trip would be good for Trevor, should he have been forced to go when he was obviously so uncomfortable with the idea?
  • Is Ben a good caregiver? Is the relationship appropriate?
  • What is the role of a professional caregiver?
  • How much training should professional caregivers have? What they should be paid per hour?
  • Should businesses that aren’t accessible be penalized in some way?
  • Is Trevor a positive portrayal of a disabled person? Why or why not?
  • Why do you suppose the title of the movie was changed from the that of the novel it was based on (“The Revised Fundamentals of Caregiving”)?

And, of course, you need not ask or answer any of these questions. If you can get past the genre (which apparently The Guardian couldn’t),  “The Fundamentals of Caring” is quite enjoyable. I was surprised at how genuinely funny I found it, how few moments of disability-related-“Oh my God that’s SO WRONG” moments there were, and how many times I went “Oh! Teachable moment!”

I enjoyed it more than I’ve enjoyed a movie about disability for quite some time.

“The Fundamentals of Caring” is currently streaming on Netflix.

Addendum: After reading this interview with the film’s writer-director, I’m amazed that “The Fundamentals of Caring” turned out as well as it did. Rob Burnett most emphatically doesn’t “get it”.

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Hallee Sorenson is Autistic. Please Send her Birthday Cards.

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

Content Note: Ableism, rudeness

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

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

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

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

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

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

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

Transcript

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

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

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

***

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

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

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

Hallee Sorenson’s Party

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

What does that mean?

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

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

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

But I wasn’t disabled at the time.

Because Hallee Sorenson Is Disabled…

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

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

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

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

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

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

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

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

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

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

 

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Thoughts on “How Do You See Me?”

On Tuesday I dropped into Twitter to see what people were seeing about Primary Tuesday, and got distracted immediately by a discussion that noted disability writer and advocate David M. Perry was involved in. I jumped right in uninvited, because apparently that’s the kind of Twitter user I’ve become. I felt quite strongly about the topic once I investigated, though, which was this year’s Down Syndrome Awareness Day (March 21) video from Italian Down Syndrome advocacy group CoorDown.

Content Note: Ableism, Assumptions, Erasure, Media Depictions of Disability

 

Cartoon representations of DNA strands, in light blue. In two strands, several chromosomes are replaced by the words "Down Syndrome". Keyword: How Do You See Me

Image Description: Cartoon representations of DNA strands, in light blue. In two strands, several chromosomes are replaced by the words “Down Syndrome”.

***

The video in question is entitled “How Do You See Me?”, starring AnnaRose Rubright, a 19-year-old woman with Down Syndrome, and actress Olivia Wilde:

 

 

I understand what CoorDown was trying to do with “How Do You See Me?” They were using the Olivia Wilde character, “normal”-looking and someone that anyone would expect to make those statements to get people interested, and then there’s the “gotcha”: the narrator isn’t the Olivia Wilde character, like you assumed, but a person with Down Syndrome. How does that change things for you, CoorDown, asks? How do you see AnnaRose? What assumptions do you have about her do you need to challenge?

CoorDown’s intent with “How Do You See Me?” wasn’t bad. But the messaging  is bad. The optics are bad. David Perry was trying to tell a CoorDown representative this yesterday, but the person wasn’t very receptive.

Here are some things about the video that were problematic for me

Disabled People Shouldn’t Be Required to Identify as Non-Disabled

There’s an implication in “How Do You See Me?” that in order for people with Down Syndrome (and, by extension, disabled people in general) to “see” or perceive themselves as people with valued social roles, and a well-rounded personality, and dreams, and a life in the community that brings them fulfilment, they also have to self-perceive as a white, non-disabled person. Not only should it not be necessary in this day and age for disabled people to self-perceive as non-disabled in order to live like a non-person person (period…forget about skin colour), it explains why this video is drawing criticism from disability advocates everywhere.

In “How Do You See Me?” AnnaRose Looks and Sounds Like She’s Waiting to Start Her Own Life

This isn’t the case, by the way. AnnaRose goes to college, works at a physiotherapy clinic, and is a Special Olympics athlete.

Yet, in “How Do You See Me?”, we hear her voice talking about “seeing” herself being and doing a lot of things while we watch Olivia Wilde do them.

As Kim Sauder says on her blog, “Crippled Scholar”:

“The video would have been far more poignant and entirely less infuriating if it had shown the narrator engaging in the activities she described rather than Olivia Wilde.”

Mixed Messages in “How Do You See Me?”

The video posits, presumably unintentionally that it’s better to have Olivia Wilde’s face than it is to have AnnaRose’s face, with the distinguishing features found in most people with Down Syndrome. For a video created for Down’s Syndrome Awareness Day, by a Down Syndrome advocacy group, that sends a rather mixed message to me.  Piggybacking a bit on my last point, it would have been nice to see more of AnnaRose in the video, not so much of “Olivia Wilde plays a girl with Down Syndrome” and “Olivia Wilde has Down Syndrome…”, which seem to be the ways the preview for the video appears on Twitter when it’s shared – without AnnaRose’s name.

Bottom Line

Again, it’s not that I think that CoorDown intended to film something that was problematic.   But there’s an implication “How Do You See Me?” that disabled people should see themselves as non-disabled simply because of an ableist assumption that non-disabled is better. And I can’t get behind that, especially from a video that’s supposed to raise awareness about Down Syndrome.

 

 

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