I was “So Lucky” to Review Nicola Griffith’s New Book: A CripReads Review

so lucky cover

Image Description: The cover of Nicola Griffith’s book “So Lucky”. The title and author’s name appear in a large font made to look like scraps of burning paper. They appear on a black background

When I was asked to write a review of Nicola Griffith’s upcoming novel “So Lucky” (to be released May 15) I had no idea that the most frustrating part of the process was going to be figuring out how to summarize the book without spoilers. I have ultimately decided to give up on that entirely and just copy and paste the summary of the book provided by the publisher. I will only preface this summary with the opinion that I think this summary is both misleading and does not do the book justice.

So Lucky is the sharp, surprising new novel by Nicola Griffith—the profoundly personal and emphatically political story of a confident woman forced to confront an unnerving new reality when in the space of a single week her wife leaves her and she is diagnosed with multiple sclerosis.

Mara Tagarelli is, professionally, the head of a multimillion-dollar AIDS foundation; personally, she is a committed martial artist. But her life has turned inside out like a sock. She can’t rely on family, her body is letting her down, and friends and colleagues are turning away—they treat her like a victim. She needs to break that narrative: build her own community, learn new strengths, and fight. But what do you do when you find out that the story you’ve been told, the story you’ve told yourself, is not true? How can you fight if you can’t trust your body? Who can you rely on if those around you don’t have your best interests at heart, and the systems designed to help do more harm than good? Mara makes a decision and acts, but her actions unleash monsters aimed squarely at the heart of her new community.

I went into reading this book knowing very little about it beyond the fact that the main character was dealing with the transition of becoming disabled as an adult. The main character, Mara gets a diagnosis of Multiple Sclerosis early on in the book. I also knew that the author, Nicola Griffith has multiple sclerosis. Griffith also co-hosts the #criplit Twitter chats with Alice Wong, founder of the Disability Visibility Project.

I genuinely think that the less you know about this book before reading it, the better. I also think that you should definitely read this book. It is a good story that is engagingly written. It also offers a great and realistic depiction of disability.

Any attempt to more clearly describe the book or even sections of it would inevitably lead to spoilers.

Now I fully admit that I don’t have MS. The closest I’ve ever come to experiencing MS is when a former coworker became convinced that my cerebral palsy was really MS and spent a week trying to convince me that I didn’t understand my own body. That said, there are a lot of moments in this book that deal with situations that are not diagnosis specific.

What I love most about this book is how real those moments of the disabled experience are. I loved reading about how Mara engages with her newfound disability and how she shifts how she interacts with the rest of the world. I love that she makes decisions that I disagree with. I love that she makes decisions that I wouldn’t because she considered an angle that I hadn’t. I love that she is a whole character with a real life.

Mara also offers a level of intersectionality that we rarely get to see in media representation of disability. She is a woman, she is queer, we get to see her navigate relationships, she isn’t desexualized, and she surrounds herself with a diverse group of friends and colleagues.

My only real criticism of the book is that the ending feels rushed. It’s a complete ending and all the loose ends are tied up but it just feels rushed. Basically, I finished it and wanted more.

The book is good and you should read it but I would be remiss if I didn’t acknowledge why this book is important to me. There have been so few opportunities in my life where I have been able to see myself in media. While, Mara and I are very different people with different disabilities, we still share common experiences. The way that Nicola Griffith navigates the nuances of disability feel more real than anything I’ve read by a nondisabled person. It is real and raw. Griffith doesn’t pull any punches just to seem more approachable for a nondisabled reader and even among what little fiction writing about disability by disabled writers there is, this is still a rarity.

I really hope that this will be the start of a trend and that there will be more books with unapologetically disabled characters that are written by people who really understand what that means.

So Lucky will be released on May 15, 2018 for more information on where and how you can purchase a copy click here.

 

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#HotPersonInAWheelchair and the Longevity of Bigotry

Four Years ago former Jeopardy Champion Ken Jennings tweeted an offensive joke

So, why am I writing about a four-year-old tweet? Isn’t it old news and basically irrelevant now?

Unfortunately, no. This tweet caused controversy at the time and because it is still online, people are still using it to harass disabled people. I had four people use it against me yesterday.

The problem with things like this is that they don’t just fade into obscurity. Periodically, someone comes across it and starts engaging with it again. The reason I was harassed (and yes I would classify it as harassment) about that tweet yesterday is because I commented about how people were still engaging with my response to the tweet. Which means people are still engaging with the tweet is still impacting people.

I tweeted my displeasure that Jennings hadn’t deleted it. He actually responded to me with this justification.

This seems like a good responsible take, except that it falls apart the second you remember that people are still being harmed by that tweet.

Twitter does not have a mechanism to encapsulate old problematic tweets with an explanation about how you now understand that it was harmful, that you regret doing it and you want to leave it up as a reminder of the harm it did. Even if Jennings wrote something to that effect among the replies, there are 1600 of them. People can hardly be blamed if they don’t know he’s sorry about it now. It also doesn’t stop the tweet from being used by others who do just think insulting wheelchair users is just hilarious.

A far better response would have been to take a screenshot and write and publish an apology and then delete the tweet. Jennings is famous enough that he could have found somewhere to publish that apology. Then he wouldn’t be whitewashing his past and he would have stopped the tweet that he supposedly now regrets from being used to harm others.

Someone accused me of just going looking for something to be angry about. They justified this argument based solely on the fact that the tweet is four years old and I talked about it yesterday.

But, it’s not going to find something that periodically shows up in my notifications. That’s just acknowledging that people are still interacting with four-year-old bigotry and that’s worth talking about. Bigotry doesn’t necessarily get stale and less bigoted with age.

You can’t absolve yourself from past bigotry if it is still harming people. Particularly if there is a way to stop that harm (in this case it’s as easy as deleting a tweet).

Jennings wants to be patted on the back for what amounts to fake contrition. I can’t believe any claim of taking responsibility if taking responsibility means justifying the continuation of harm.

One silver lining of this tweet’s latest resurgence is that it has inspired the #HotPersonInAWheelchair which is a brilliant celebration of disabled beauty and confidence. I do so love the confidence and snark of the disabled community.

Annie Segarra (you can support her on patreon. She also has a YouTube Channel) started it off with this

The whole hashtag is well worth a look, but be advised that some of the images may be NSFW. I certainly hope this protest will be stronger than the bigotry that inspired it.

Jennings should still delete that tweet though and finally really take responsibility for it by apologizing somewhere other than Twitter.

 

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

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If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

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The Shape of Water is a Toxic Romantic Fantasy: The Issues With this Disability Romance Narrative

 

ShapeWater-tank

Image Description: A still from The Shape of Water. Sally Hawkin as Elisa, a dark haired woman shown in profile has her hands on the glass of a large tank. On the other side a humanoid but scaly creature with webbed hands gazes back at her.

 

This post contains spoilers

 

I know I’m late in presenting an opinion on Guillermo Del Toro’s The Shape of Water but considering that the Oscar nominations were just released and Del Toro’s film has garnered a number of nominations including Best Actress for Sally Hawkins, I may be late but I’m certainly not too late.

The Shape of Water is basically a dark and flipped to take on a combination of Disney’s and Hans Christian Andersen’s original The Little Mermaid. Instead of a sea creature wanting to walk among humans, a human wants to be with a sea creature. Elisa, played by Hawkins is a woman who has no voice. She didn’t sell it to a sea witch but rather experienced an undefined violent injury to her vocal cords as an infant.

Unlike her Disney counterpart Ariel, Elisa doesn’t want to be separated from humanity around her but is instead ostracized because of her disability. In fact, at the end of the film, she seems prepared to give up her monstrous lover in order to stay with people. It is only because she is mortally wounded and no longer given a choice that she ends up in the water with her beloved creature.

Her character—like all of the characters in the film—is one-dimensional. She is a mishmash of disability stereotypes. She is a social outsider who is largely perceived to be “other”. She clearly longs for more inclusion but is unable to get it. She experiences only simplistic emotions that seem more appropriate to a toddler than they do to a grown woman who has not one but two gratuitous masturbation scenes (so you can throw in a creepy sexualization of innocence as well).

The lack of emotional range for the character is really down to the performance given by Sally Hawkins. I have seen many people applaud the silence of her performance but silence isn’t a performance, it is a narrative choice. A performance would be everything that the character does outside of that silence. Which in this case is predominantly very simplistic facial expressions and a very little amount of sign language. What that amounts to is that Elisa’s character has less to do with her character or the performance given by Hawkins than it does with the storytelling around it.

Everything about the narrative shows how alone Elisa is. She lives alone in a poorly furnished apartment. Her neighbour and only nonwork-related friend largely ignores her if it doesn’t suit him. She is an orphan who experienced violence. She is so ignored at work that she can take her lunch breaks with her employer’s top-secret project and have it remain largely unnoticed even by her closest coworker.

Her only driving motivation is to be wanted. To be Included. She ultimately gets one and not the other which is what makes this film a nightmare.

Del Toro masterfully sets up a narrative where Elisa’s ostracization and treatment are clearly the fault of people around her. The film directly acknowledges that her oppression is socially constructed and then it lets the world get away with it.

Even at the end Elisa never intends to run away with her lover. She saves him from vivisection and lets him camp out in her bathroom but the relationship has an expiration date. The day he can be safely released back into the water.

Even as they stand on the edge of the canal and the creature asks her to go with him, she refuses. She still wants the human world. She still thinks her place is there. She again loses her right to choose though, after her boss, the film’s villain shoots her. She is either dying or dead when she is lifted and carried into the water by her lover. The lover, she intended to let go. He either heals or resurrects her in the final moments of the film enabling her to breathe underwater so that they can spend their lives together. Away from the world that rejected them both. This is supposed to be romantic.

Even if you ignore the rejection of Elisa’s agency when she said that she intended to stay on land. The film acknowledges that the barriers she experienced were socially constructed and then concluded with “It’s better to just leave”. Leave and live what is implied to be a solitary existence where she has only her lover for company.

It is interesting how closely this conclusion mirrors my own youthful fantasies about romantic relationships (except that I kept my imaginary lovers human). I often felt like any relationship I might find would be a once in a lifetime opportunity and that we would inevitably end up living a secluded life together because of the discrimination that I faced. Except in the real world, that kind of relationship is a recipe for abuse and I’m glad I grew out of it.

The Shape of Water could so easily be a different kind of horror film about the dangers of social denial of the sexuality of disabled people and how that makes them easy targets for abusers. Instead, it does exactly that story but ignores the inherent dangers of becoming infatuated with the first man who pays you any attention because the world has spent decades telling you that you are undesirable. It takes what should be a cautionary tale and turns it into a bittersweet romance. In so doing it absolves the bigoted world that rejected Elisa and ends on the message that if the world doesn’t work for you, even if it’s clearly the result of discrimination that the best option is to leave.

At least in both versions of The Little Mermaid, the mermaid was clearly trying to move from one society to another. Elisa gives that up for a completely uncertain future. As Elsa Sjunneson-Henry points out in the title of her own review of the film “I want to be where the people are”.

Disabled people don’t need more pseudo-romantic movies that romanticize our otherness, that connect us so clearly to monsters. That say if society doesn’t accept you that you might as well embrace the monster that they see in you and join literal monsters in a life away from humanity.

 

 

 

 

 

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Dear Judith Newman, I’m Writing this For You because You Didn’t Write For Me

 

boycott to siri

Image Description: Text “BoycottToSiri” in white on a black background

 

Dear Judith Newman,

I have not read your book To Siri With Love and I frankly don’t intend to. I know this will frustrate some people, maybe even you but I don’t actually think it is relevant to the thing that I want to criticize. I have seen my fellow actually autistic people in pain from your book. I have read their critiques and there are things about your book that quite frankly are unlikely to be saved by added context. The transphobia that exists in the introduction to your book, that you wrote that you wanted the power to sterilize your son, the sexist and disrespectful way you referred to Amythest Schaber.

Yes, yes I know, you’ve since said that you no longer plan or intend to sterilize your son. The thing is it’s too late. You published that awful bigotted sentiment in a best selling book, you can’t take it back now. The damage of that awful statement is already done. Even if you remove it from subsequent editions, it’s still out there and that message will be stronger and longer lasting than any weak backpedalling you do now.

You claim that you apologized to Amythest but as far as I’ve seen you’ve at best made a fauxpology and at worst you’ve simply made excuses. You also still clearly don’t understand why what you did was wrong, so I will again try to explain it to you. There are two major issues.

You described Amythest as a manic pixie dream girl. This term describes a narrative device where a female character (usually quirky) exists entirely for the benefit and consumption of a straight male protagonist and the presumed straight male audience.

You did somewhat address this critique but I have yet to see an actual apology. You have so far only been sorry that your intent was not effectively conveyed. You say that you thought the term was just a more modern version of gamine (a word so obscure I admit I had to look it up). You were just trying to be down with the kids. This response shows that you didn’t understand the other part of why calling Amythest a manic pixie dream girl was inappropriate.

You shouldn’t have been describing Amythest at all. What does what Amythest looks like have to do with the YouTube videos you were citing? Nothing. Reducing Amythest to a physical descriptor regardless of the underlying meaning of the intended compliment was itself inappropriate. People did not need to know that you think Amythest is gamine (a girl with mischievous or boyish charm) to know those videos are full of great information.

The thing I really want to talk to you about though is your response to the backlash from actually autistic people. You brushed off those criticisms by saying that you did not write your book for us.

This is a big problem especially for someone who claims to be autism friendly. With this statement, you prove that autistic people are just props for you. You did not care about the impact of this book on us. You also hide behind stereotypes to deflect from criticisms.

Apparently, we can’t understand your book because you put jokes in it. I can’t speak for all of us but I assure you there are many autistic people who understand jokes. We also know when they are not funny or at our expense.

There is something so utterly isolating about being told that a book where autism is central to the narrative was never intended for autistic people. Are we not part of the population? Do we not read? Shouldn’t you have considered that we might read it? That we are hungry for good representation?

If you are as autism friendly as you claim, shouldn’t you care more about what we have to say? Did you consider getting a sensitivity reader before you published?

You did not write for us and because of that regardless of the content of your book, you promoted our continued marginalization.

You wrote about us without our input to be consumed by people who already think of us as other. By erasing us from your inteded audience you turned us into zoo exhibits.

You did not write for us and the only real reason for forgetting that any part of the population might be part of your audience is because you forgot or don’t acknowledge that we are.

I write this for you because you did not write for me and I want you never to forget that autistic people read your book anyway. autistic people had opinions on your book anyway and you did not listen. Worse than that you have tried to actively silence us.

You did not write for us. Well too fucking bad, we remember that we human even if you and Harper Collins forgot. We’ll read whatever we want and protest when it hurts us. Rave reviews from Jon Stewart be damned.

I write this to you to remind you that regardless of your intent you have caused harm and your response to that has been erasure.

I write this also for anyone who thinks they can write about a marginalized group to which they do not belong and deflect backlash with “well I didn’t write it for you” as though that erases the harm instead of increasing it tenfold.

Sticks and stones may break my bones but silencincing autistic voices hurts far more than me.

Sincerely,

Kim Sauder (Actually Autistic)

 

How to support my work and give money to an actually autistic person who does not have a book deal with Harper Collins

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The Good Doctor Continues to Infantalize its Autistic Character

The Good Doctor

Image Description: Promotional poster for the upcoming ABC show, The Good Doctor. The title appears in blue over a grainy black and white image of half of series star Freddie Highmore’s face (he is a young white man with dark hair). In contrast to the black and white, his eyes are a vibrant blue.

After watching the second episode of the new ABC series The Good Doctor (you can read my thoughts on the pilot here), I am left wondering if Dr Shaun Murphy could possibly have gone to medical school. He has a vast understanding of certain aspects of medicine and biology but no real comprehension of practical application. It leaves me wondering how he could possibly have completed a medical degree without apparently ever having been in the same room as an actual human patient.

This episode really makes Shaun seem like an alien who has never encountered humans before. This is I expect partially an attempt to highlight Shaun’s social isolation. Social isolation is a common and real aspect of the autistic experience. The show, however, takes it to an unbelievable extreme. It’s not just that Shaun has difficulty connecting with other people and experiences marginalization as a result. It’s as if he never even been around people or consumed any sort of popular media.

This is worsened by the complete lack of other autistic people in not only the show but the fictional universe in which it inhabits. Other autistic people are purely hypothetical. The concept of an autistic community is entirely absent. This allows the show to constantly juxtapose Shaun with a definition of autism that they choose rather than show that Shaun’s humanity is not contingent upon overcoming a very limited and clinical understanding of autism is. So while the show acknowledges the existence of other autistic people, they are never seen. This only highlights Shaun’s isolation because simply by virtue of being seen he is different from other autistic people.

How is it that an adult who presumably went to medical school, an endeavour that requires contact with other people like fellow students, university administrators, professors and yes even patients is not only clueless about bedside manner but who is entirely unaware of sarcasm or its purpose in communication.

I am loathed to say it but even The Big Bang Theory does it better with Sheldon Cooper because at least he is aware of sarcasm even if he can’t always recognize it.

It is entirely possible and in fact likely that an autistic person be both aware of sarcasm, have a theoretical understanding of its usage and purpose, and still have difficulty recognizing it in conversation. It is rather unbelievable that a man in his twenties whose life experience clearly brought him into contact with other people would need to ask a colleague the purpose of sarcasm. It would almost certainly have already been used to belittle him before.

Shaun Murphy clearly cares about people. Making his empathy clear is one of the few positives of the show. Yet, somehow the show wants us to believe that this caring has always occurred at a distance.

In some ways this utter cluelessness about people, makes the concerns of the show’s villains (those doctors who don’t want Shaun practising) seem valid. This seems to be a decision that replaces the more common narrative device of having the autistic character be the butt of jokes (though that happens in this episode too) with just utterly cringe-inducing interactions.

Somehow, Shaun got all the way through medical school and not have been coached in any way on bedside manner. He makes most of his patients uncomfortable or outright distressed.

In a subplot pulled directly from show creator David Shore’s previous medical drama House, a patient brings in a baggie of their own vomit (though in House it was their own poop and no, no one had requested a stool sample). The nurse supervising Shaun (because of course, they are infantilizing him) is horrified but Shaun just wants to run unnecessary tests.

Apparently, no one ever explained to Shaun that it is not only unnecessary but also inadvisable to run every possible test. No one ever explained statistics (something I presume he would be very good at) or how they can be used to determine the likelihood if a given test outcome and indicate the level of risk to not performing the test.

Shaun seems to think that it is reasonable to perform tests if there is even the smallest chance that something might be found.

This suggests that Shaun has also despite being self-described as poor never had medical insurance explained to him. Does no one in this universe have to pay the bills for the things he does? I mean maybe? It’s already clear that the ADA doesn’t exist in this universe so why would the rest of the infrastructure of the American healthcare system (which I’m sure gets discussed at some point during medical school) exist either?

There is really no reason for Shaun to be this clueless. He should have met checks and balances in med school and in interactions with fellow students, teachers and patients. I really need to see flashbacks to his medical school days. How were none of these concerns identified and addressed then?

It’s hard to believe they wouldn’t have been but that would require the character to be more complex. They would have to show the effort that autistic people expend to analyze and navigate personal interactions. Shaun is, however, not a complex character he is meant to be innocent and guileless.

Sarah Luterman, who has been doing episode breakdowns has twice described this infantilizing characterization to a T. First, by saying

“So far, The Good Doctor is basically House, if House was an adorable talking kitten instead of a pill-popping curmudgeon”

And in the second episode breakdown by saying,

“There is no adult human with a medical degree as naive as Dr. Sean Murphy. It’s ridiculously bad writing. Sean Murphy is not written like an autistic man, he’s written two autistic children standing on each other’s shoulders.”

The show has been confirmed for at least a complete first season and I do expect that there will be some personal growth for Dr Shaun Murphy in it. I however don’t expect them to ever answer the question of why none of that growth was possible prior to the events of the show?

 

 

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The Good Doctor Lives Up to Expectations as Stereotypical Inspiration Porn

The Good Doctor

Image Description: Promotional poster for the upcoming ABC show, The Good Doctor. The title appears in blue over a grainy black and white image of half of series star Freddie Highmore’s face (he is a young white man with dark hair). In contrast to the black and white, his eyes are a vibrant blue.

Yesterday the new ABC drama The Good Doctor premiered. I have had my concerns about the show ever since I first saw the trailer in May. All of my concerns have now been validated.

The show’s portrayal of autism is deeply stereotypical and like so many portrayals of autism centres around an essentially magical autistic white man. It is particularly apt that today Disability Scoop published an article (which does not mention The Good Doctor) about a study which found that Hollywood routinely creates overly stereotyped and unrealistic autistic characters.

The Good Doctor’s Dr Shaun Murphy fits that description to a T. He is basically a walking, talking embodiment of the DSM diagnostic criteria. He like so many of the autistic characters before him has the characteristic Hollywood autism accent. He is sensitive to noise and is socially awkward which is played off as an endearing innocence but serves mainly to reinforce the idea that autistic adults are effectively children.

He is also a savant, because of course he is. Autistic characters cannot take centre stage in mainstream media unless they fit into either an over pitiful role or as in this case an essentially impossible level of exceptionalism.

And let’s be clear, the character is impossible. He isn’t just a savant (and how many times must I repeat that savantism is rare) his skills are inhuman. It’s not just his ability to visualize the entire human vascular system and apply it to the medical realities of different people (though I admit that’s a new one that I haven’t heard before), his awareness is absolute. He misses nothing. He identifies problems that are not only easy to miss but also that will likely be missed. He does this while not even appearing to be paying attention.

Clearly, Hollywood hasn’t gotten the memo that savants are humans and are fallible.

Despite this, Shaun is also perceptive. This is played out as great wisdom. He clocks and calls out his supervisor’s arrogance.

Show creator David Shore makes no secret of the fact that Shaun is explicitly intended as inspiration porn.

“He’s a catalyst for change among the other doctors. His different way of looking at the world will, I think, inspire them.”

Shaun, like so many disabled characters before him, does not exist for himself but rather for other people.

I remarked in my earlier piece on the show’s advertizing that “[t]he most believable part of the trailer is the scene where a room full of people try to justify discrimination”. What was true of the trailer was more or less true of the show. Much of the conflict was contrived and unbelievable.

Early in the episode, Shaun witnesses a child injured by falling glass in an airport and uses his magical powers, *cough* no I’m sorry I meant “savant” skills. to correctly identify major issues to save the child’s life.

Of course, it arises that Shaun must perform an emergency procedure and requires a knife. But he’s past security in an airport and no one seems to have one. Oddly despite it definitely being several minutes since the falling glass incident (which was spectacular and unlikely to go unnoticed) and a crowd has gathered to watch Shaun work, all airport staff seem completely unaware that it has happened and that there is a medical emergency.

Shaun is somehow able to figure out how to not only MacGyver medical equipment and plot out meticulously where he’s going to get everything but when it comes to asking a TSA agent for a knife, he can’t clearly articulate why he needs it. The TSA agent refuses (again how is literally no one affiliated with the airport aware that a child is dying?), Shaun decides to steal the knife and run. Of course, he’s chased and tackled, luckily within eyesight of the huge crowd–that again no one from the airport staff seems to have noticed–and the child’s distraught parents. Shaun is allowed up–having apparently suffered no particular anxiety from having been tackled–and saves the child.

Well, at least until they get to the hospital and he determines that the child needs an echocardiogram but can’t express why the child needs it so is ignored. He tries to make a run for the operating area and is kicked out of the hospital. He then futilely tries to regain entrance instead of calling the head of the hospital, who he knows and is the person championing the idea of giving him a job.

While it is true that autistic people can struggle with knowing what to do in situations of high stress, it is something we can learn. It is also something that a doctor needs to be able to do to be effective.

Quite frankly between Shaun’s inconsistent ability to basically be either BBC’s Sherlock–capable of complex multistep planning–or to try and run past security staff at the first roadblock (there is no in between) and people constantly ignoring him, I’m utterly shocked the kid didn’t die (I could I suppose have included a spoiler warning but does the outcome really surprise anyone?). That’s the magic of television folks. In real life that kid is dead six times over.

The only part of the character that I did identify with was his tendency to go silent for socially unacceptable amounts of time in response to questions he didn’t immediately know the answers to.

Frankly, that’s not enough of a consolation.

Dr Shaun Murphy is fundamentally the quintessential supercrip. He does not resemble any actual autistic people even if as a result of him being a walking DSM entry, people find tics in common. He entirely reinforces the idea that to be both disabled and acceptable you must also be exceptional.

I fully expect the show to continue in this vein, with Shaun’s coworkers and patients gaining life-changing insights from their very own magical white autistic man.

I’m still waiting for stories with disabled characters who are both more realistic and whose lives exist for themselves and not for the Hallmark card insights that they offer others.

But since this is what people actually seem to think passes as positive portrayal* I fully expect to be waiting a long time.

Here’s hoping for early cancellation and that this doesn’t get eight season’s like David Shore’s previous foray into supercrip doctor drama, House MD.

*I refuse to consider anything that does not actually involve the group being portrayed representation

 

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#KiehlsxAutismSpeaks: Buying Face Cream won’t Help Autistic People & Neither will Autism Speaks

 

Matthew McConaughey

Image Description: A screenshot of Kiehl’s Autism speaks campaign video. Actor Matthew McConaughey is on the right. While text reading “with every share Kiehl’s is going to donate $1 to its Autism Speaks campaign   * up to $200,000 benefiting Autism Speaks”

 

There is so much wrong with the #KiehlsxAutismSpeaks campaign that I hardly know where to begin. The campaign has two components, the first is a consumer component which donates a portion of sales to Autism Speaks. The second is a social media campaign which raises money based on the number of shares a video featuring Matthew McConaughey gets on Twitter and Instagram.

 

There are issues with the messaging of the ad. There are issues with the methodology of the campaign self.  There are issues with the fact that the campaign is linked to Autism Speaks which is a very controversial organization within the autistic community.

The ad itself falls into the trap of so many public charity fundraisers for disability. It utilizes problematic language by defaulting to person first language when autistic people tend to prefer identity first language. There is also the focus on autistic children. This is an issue for a couple of reasons one of which ties into the complex connection to Autism Speaks. The other is simply the fact that so many of these campaigns focus on disabled children and tend to forget that those children grow up. This creates a real and serious service gap which tends to leave disabled adults without resources.

The connection with Autism Speaks makes it worse because as a result of their history of minimizing not only the experiences of but even the reality of autistic women, there is a real trend of late diagnosis or non-diagnosis. This means there are countless autistic women who did not have the benefit of services as children and who have to learn to navigate an autism diagnosis as adults with little or no support.

Autism Speaks did this as a result of the historical and inaccurate belief that autism is more common in boys. They created an entire campaign around this misconception. One of their best-known campaigns is likely the Light It Up Blue campaign which was designed specifically to recognize that false reality. Blue was meant to recognize that boys were more likely to be autistic. Despite new and continued research showing that women are systemically underdiagnosed with autism, the campaign continues. Also, focusing on autistic children alone ignores the generations of women who were not diagnosed because autism was not considered to be an option.

Charities, in general, have a tendency to focus on children because they are perceived to be more palatable than their adult counterparts. This has long term consequences in major gaps in access to services and resources by disabled adults. It also leaves a cultural gap where disabled adults simply don’t appear and are thus not expected to actually show up in society.

So charitable giving is often fraught with problematic messaging in general. Autism Speaks however, is more problematic than most. This is because it is both one of the largest “autism advocacy” organizations and it is also deeply unpopular with autistic people to the point that some have labelled it a hate group. The Caffeinated Autistic has a pretty good run down of many of the serious concerns that autistic people have regarding Autism Speaks.

Some of the primary concerns include the generally low percentage of funds (only 3%) that actually get spent annually on actual services for autistic people and their families. So, the Kiehl’s video campaign if it reaches the maximum 200,000 shares will only really amount to $6,000 going to actually helping autistic people. 63% of Autism Speaks’ budget is spent on fundraising and raising awareness.

The kind of awareness that Autism Speaks has raised in the past is deeply troubling. They released a video which I really demonized autistic people and suggested that they invariably ruined the lives of their families. The video tries to make the distinction between autistic people and autism but in reality, autism is not something that is or can be separated from the person.

 

*video transcript at the end of this post

They also produced a documentary called Autism Every Day (link is not to the video but there is a link to the video in this article) which featured a clip of a woman describing her fantasies about killing herself and her autistic child while that child was in the room.

Autism Speaks has a track record of promoting dehumanizing narratives around autism. They also have a history of not having any actually autistic people in positions of authority within the organization (this has changed somewhat recently). They have made some cosmetic changes to their messaging recently but they still largely benefit from their old messaging and they do not challenge or cut ties with individuals and organizations which fundraise and “raise awareness” on their behalf (I wrote about this previously).

So what kind of awareness is this campaign actually raising? I would argue none at all. We are well past the point of being able to count simply acknowledging the existence of autism and autistic people as meaningful awareness. People know that we exist. What we need now is for people to actually engage with creating a culture and a society that actually makes our lives better. As autistic writer, Sarah Luterman points out that Kiehl’s describes their special face cream (which is just a rebranded version of a product they already offered) as “a daily face moisturizer to promote autism awareness.” Luterman then astutely points out “[t]he site does not elaborate how exactly a face moisturizer would promote awareness of anything.”

Hiding behind a celebrity face and making the fundraiser so effortless also endorses uncritical engagement with a very problematic charity. People simply assume that the charity is good because a cosmetics brand and Matthew McConaughey told them so. It does not suggest that they actually engage personally with Autism Speaks in any way or engage with autistic people themselves. It may be a very effective way to raise money but it is a particularly useless way to raise awareness and it is a potentially harmful way to raise awareness. It emboldens an organization which is unpopular with the people it purports to speak for. It is infinitely ironic that an organization which calls itself Autism Speaks has spent the vast majority of its existence speaking over and silencing actual autistic people. In fact, we have our own organizations and engage in self-advocacy. The Autistic Self Advocacy Network and the Autism Women’s Network are too great examples of organizations run by autistic people for autistic people.

This campaign tells people that they can benefit a marginalized group simply by buying something. Not through any actual engagement with that group. Which reinforces ideas of separateness and the continued proliferation of false ideas around autism and autistic people.

It’s a fundamentally dehumanizing use of a saviour narrative which positions autistic people as a group needing to be saved by nonautistic people.

It’s also that truly ineffective approach where people buy something and it supposedly helps a charity. Which presents a very self-serving narrative of solidarity. “Buy a face cream that you’ll benefit from and help someone without doing anything else” That sort of campaigning particularly when trying to help a marginalized group of people is particularly ineffective because for meaningful change to occur in raising the status of an oppressed group actual engagement is needed. This is the opposite of that. This tells people that they can help a marginalized group at a distance without any meaningful action. It maintains the “othering” of autistic people.

Many autistic people have spoken out of about the campaign particularly on Twitter where the Matthew McConaughey video is being widely shared. There is even a change.org petition asking Kiehl’s to reconsider its partnership with Autism Speaks. I would add my voice to those autistic people who are asking you not to support this campaign or Autism Speaks in general.

This kind of ad campaign doesn’t raise awareness so much as it reinforces the “otherness” of autistic people. It suggests that non-autistic people can be the helpers and saviours of autistic people simply by buying face cream or sharing a video on Twitter or Instagram. It fundamentally does not in any meaningful way raise awareness about autism or autistic people.

I would ask that people take meaningful steps to creating a culture and society that is accessible to autistic people and which does not require us to be either cute children or threats to the happiness of everyone around us.

If you want to actually help autistic people and to actually be aware of us, I would suggest the following autistic activists on Twitter (just search for #ActuallyAutistic), reading autistic writers and actively avoiding and speaking out against campaigns which supports harmful organizations and which present sharing the video and buying face cream as meaningful engagement.

 

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*transcript courtesy of the Autistic Self-Advocacy Network

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?