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)

 

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Tommy Adaptive and the Complicated Ethics of Having No Alternatives

 

Tommy Adaptive

Image Description: Logo for Tommy Hilfiger’s Adaptive line. Navy Blue text on a black background which reads “Tommy Hilfiger adaptive clothing”

 

Tommy Hilfiger has come out with a line of adaptive clothing for disabled people and I am conflicted. There is so little truly good adaptive fashion available to disabled people and the Tommy Adaptive line is pretty and stylish. Something that is frequently decidedly lacking in adaptive clothing which often seems to presume an elderly clientele and that this clientele will not care if their clothing is hideously ugly (apparently this is somehow a dress and not a hospital gown). I am offended both for this unfortunate assumption about older people and for the fact that clothing brands tend to forget that disabled young people exist.

Adaptive clothing suffers from many pitfalls. If it isn’t hideous then it is still only available online and then may only ship to certain locations. This is true of the Zappos adaptive line (limited to the United States, most models of Nike’s accessible Flyease shoes (limited to the United States), much of Marks & Spencer’s “Easy Dressing” children’s clothing (United Kingdom) and Tommy Adaptive (Canada & the United States). Access to these products requires living in the right country, paying for an expensive forwarding service or knowing accommodating people in those countries. Thank you to the incomparable Alice Wong for sending me my second pair of Nike Flyease shoes after they stopped selling women’s styles in Canada (I will fight anyone who says the friend you make on the internet are fake or in any way inferior to the people you meet in the corporeal world).

The geographical limitations of so many of these products are in and of themselves a serious barrier to access. The fact that most of them are only available online (I’m not sure about the M&S products) requires what is effectively an expensive gamble because they cannot be tried on first (who knew that my autistic self would ever dare buy shoes online but what other choice do I have?). Returning items can be difficult if you are disabled and potentially impossible if you live outside the regular service area and have relied on friends or a forwarding service to get the item. If it doesn’t fit or isn’t flattering then you may be out of luck and out the money.

In terms of actual stylish clothing, Tommy Hilfiger rules the adaptive market. Zappos has a few stylish items designed to be accessible but most of their “adaptive” clothing is really just standard athletic wear. I did not need Zappos consumer research to know that sweatpants and leggings are both stretchy and comfortable. Luckily, I also don’t need Zappos to buy those things. They aren’t exactly work appropriate. They are also culturally stigmatized as the uniform of the lazy if they are worn anywhere except going to and from the gym. They are decidedly not adaptive.

So, Tommy Adaptive enters the market and there aren’t any leggings in sight. There are blouses and cute trousers and cardigans. These clothes are designed to make you feel pretty. It is a distinct departure from almost all preceding accessible fashion. Women’s pants sizes even go up to size 16 which while not an expansive size range is still two sizes higher than Hilfiger’s nonadaptive women’s clothing which tops out at 12.

Tommy Adaptive offers me a unique conundrum because I am both physically disabled and so could benefit from this clothing line (well the tops anyway, my hips and ass will not squeeze into a size 16) and autistic. This is where the ethical conundrum comes in. Tommy Hilfiger, the man is on the board of Autism Speaks.

Autism Speaks is an organization that is deeply unpopular with actually autistic people. (I’ve written about it before so I won’t rehash it all here). Sufficed it to say, I have serious issues with the charity and do not want to support them or people associated with them.

Yet, I cannot tell people not to buy Tommy Adaptive clothing and I cannot even say that I won’t buy any myself. Disabled people have so few options that we do not have the benefit of voting with our wallets and taking our money elsewhere. We do not have the privilege of taking our business elsewhere. There is far to often no place else to take it.

Tommy Adaptive has more or less cornered the market on adaptive clothing that is not either horribly ugly or simply drab and utilitarian. They are more or less the only game in town except the town is actually the world. They provide a product which functionally can make people’s lives easier and which makes them look good in the process. I cannot in good conscience tell people to not take advantage of that if they are able.

All I can do is scream into the void my rage that there are so few options that people are put into the position of having to support companies that they find morally repugnant because there are no alternatives. I am just as furious that the few options that are available are often limited to specific geographical regions and that even if we live in those places that we are relegated to shopping on the internet because products for us are not available in the same way comparable products are available to nondisabled people.

Accessible fashion is unfortunately far too frequently not accessible at all. Yet, these brands are publicly lauded for considering us at all even as they are designed and marketed to keep us separate.

 

 

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Euphemisms for Disability are Infantalizing

Labels

Image Description: a hand places disability label cards onto illustrations of children. Still taken from this youtube video

 

I have written about the importance of language as it relates to disability before. To oppose the idea that clear language should be avoided in favour of what can best be described as pretending difference doesn’t exist to opposing the replacement of clear language with euphemisms.

Euphemisms are rampant in disability discourse. There is this misguided idea that disability must be softened and made palatable.

This comes from general assumptions that the word disabled is negative and shouldn’t be used to describe people and from watching words that relate to disability be adopted by society as insults.

The best example of this can be seen in the evolution of language around intellectual disability. In the early, to mid-20th-century people began to realize that language utilized to describe intellectual disability had been adopted by the dominant population as insults. Words such as idiot and moron which had been medical terms are now commonly used with the intent to offend. In order to combat this, a new term was adopted in order to have an accurate medical term which was not tainted by having become an insult. That word was “retard”. This word two has long since become an insult and there is a movement to have it struck from the lexicon.

As new words became insults, the search for new language continued but instead of changing direct medical terminology people began substituting euphemisms. Terms like “special needs”, “differently abled”, “physically/mentally challenged” and “diffabled” etc. began being used in an attempt to distance disabled people from the way language continued to be used to stigmatize disability.

The thing is though, this doesn’t work. While language has become a way to stigmatize disability by weaponizing it against both the people it was initially meant to simply describe and the general population along with inanimate objects. Basically, anything that causes people displeasure might now be described with a word originally intended to describe disability.

This really isn’t particularly surprising, the problem has never been language until it was used as a weapon. The problem was that disabled people are stigmatized and as a result, things associated with them including language become associated with that stigma.
And yet, many people continue to look for the right kind of faux positive wording that will magically erase centuries of systemic prejudice without actually engaging and challenging the core of that prejudice.

Members of the disability community have fought against the lack of clarity and reductionist nature of euphemisms by reclaiming a disabled identity and intentionally using the word disabled. Disability rights activist Lawrence Carter-Long created the #saytheword campaign to advocate for using the word disabled.

Despite this, many people outside the disability community and even some within it continue to hope that they can find that magical term which will somehow unlink language associated with disability from the stigma associated with disabled people.

I have repeatedly, made all of the arguments about how euphemisms for disability simply do not work how they undermine clarity and reinforce negative associations with disability by going to such ridiculous lengths to so much as mention disability. What I’ve been thinking about most lately in regards to euphemisms, however, is simply how infantalizing they are.

Euphemisms used for disability are either overly cutesy like “special needs” or linguistically awkward such as “differently abled”. Often they are a combination of the two like “diffabled”. A friend just posted on Twitter that they had also just heard a new term “specially abled” which again combines linguistic awkwardness with overly cutesy language. I am uncomfortable with all of it.

I am a 30-year-old woman and I cannot think of a single professional setting in which I need to discuss issues pertaining to my disability such as accommodation where I would go into that situation and say,

“Hi, I have special needs and I need to discuss workplace accommodations”

Or

“Hi, I’m diffabled, who do I talk to about getting speech to text software on my computer”

These terms have no place in a professional or academic environment. They sound childish and are ultimately confusing. The term “diffabled” is so awkward that it may simply be interpreted that the speaker has simply stumbled over the word disabled. Even if it is heard and received as intended completely lacks clarity and people might be confused.

There is also the very important reality that terms like disabled have legal meanings that come with legal protections such as rights to accommodation and dancing around with euphemisms could very likely create barriers to accessing those accommodations.
Cutesy language is for children but terms like “special needs” and “differently abled” are not words that we are meant to grow out of and find the appropriate terms and adulthood. These are words some people advocate should replace clearer words.
I can only surmise that whoever came up with these words genuinely does not expect anyone that these words describe to actually grow up. To actually have to interact in the adult world and present words that seem fit only to coo in a high-pitched voice at an infant about something other than disability.

So, in addition to rejecting the word disabled, euphemisms for disability are also creating cultural understandings of disability and those understandings do not support prolonged inclusion. They are fundamentally inconsistent with being taken seriously as an adult.

Their positivity is only true in the context of presenting disabled people as children.
In the end, euphemisms reinforce the very thing that they were created to challenge.

They reinforce negative understandings of disability and maintain false impression that disabled people are eternal children.

 

This is an inappropriate burden to place on any disabled person. Shifting from insults to being framed in childish terms is not an improvement.

It certainly hasn’t done anything to challenge the ingrained systemic prejudice disabled people face. If anything it has added to it.

#saytheword

 

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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?

 

 

 

 

I Have a Patreon Now: Please Help Me Make crippledscholar More Accessible

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