Reflecting on the Fact that Hans Asperger was Really a Nazi and not just Working from the Inside to Protect Vulnerable People

There have been a couple major articles written about Hans Asperger, the man who categorized what would eventually be called Asperger’s Syndrome and then eventually just folded into the autism spectrum. These articles, the first of which was printed in the New York Times and the second in The Guardian both discuss Asperger’s history prior to and during WWII. A lot of English language research about Asperger has framed him as a man who protected disabled people from the harsher and more lethal aspects of the Nazi’s euthanasia programs. New research that did not rely so much on texts that had already been translated into English paint a much less flattering picture of Hans Asperger. This new research more clearly indicates that Asperger was not altruistic in his actions and personally made decisions that led to the deaths of disabled people.

I was diagnosed with Asperger’s Syndrome thirteen years ago. So how do I feel about the fact that the man who lends his name to a diagnosis I was given (Asperger’s is no longer an officially recognized diagnosis. As of the publication of the DSM V the diagnosis is just considered part of the autism spectrum)?

I’m completely unsurprised to be honest.

Part of this is probably because I never read books like Neurotribes or Asperger and his Syndrome (link leads to a paywall). Both are considered influential works on autism and both paint a kinder picture of Asperger either by glossing over his Nazi ties or suggesting he actually protected his patients from the Nazis. I have no preconceived notions to be challenged in the face of this new information.

Additionally, I’m aware enough of the history of men who are credited with discovering or categorizing other disabilities and that history suggests that if people googled their condition’s namesakes, a lot of people would be uncomfortable disclosing their diagnoses just to avoid association with the people whose names are attached.

Consider John Langdon Down, the man who categorized Down Syndrome. He initially called the condition “Mongolian Idiocy” and if that sounds really racist, it’s because it is. He called it that because he believed that people with intellectual disabilities were evidence of evolutionary throwbacks. He believed that people of colour were less evolved than white people and thus inferior. He further believed that because he could find similar physical traits between certain disabilities in white people and nondisabled people of colour that this meant that they were genetically similar racially. Basically, intellectually people were inferior because they weren’t genetically white.

He was a real winner. You can read more about his theories on race and disability in his 1866 paper Observations on the Ethnic Classification of Idiots. It’s awful so I don’t recommend it.

Ironically, Down Syndrome only became known as Down Syndrome after people finally clued into the fact that the term Mongolian Idiocy is just deeply offensive, so they changed the name to include the name of the man that invented that ableist and racist name for ableist and racist reasons.

I’d really like to sit those people down and ask them what they were thinking.

I’ve never identified as an “Aspie” as many people who received an Asperger’s diagnosis do. I have always felt that autistic far better described my experience and was just easier for other people to understand. So I don’t need to figure out what this means in relation to a label I identify with. I am also unsurprised that Asperger himself would have landed me with the not so flattering label of “autistic psychopath”.

It is interesting that these men didn’t name these conditions after themselves. Other people chose to do that after the terms those men came up with were recognized as harmful.

I am also aware that there is some concern about the revelations about Asperger in relations to people who actively identify as Aspies. There is a socially constructed hierarchy of autism which is usually defined by functioning labels. These are often distilled into high and low functioning. These kind of labels are harmful and many within the autistic community fight against them. Asperger’s Syndrome was considered a milder (read ‘higher functioning’) form of autism so some people who identify as Aspies use their specific diagnosis as a way to signal their place at the top of the hierarchy.

While this behaviour (and yes I know it wasn’t everyone so please no angry comments about how “You’re an Aspie but not like that”) was always harmful to the autistic community at large. There is now a sense that it is even more sinister considering the revelations about how involved Hans Asperger actually was with Naziism.

On that note I’d say, things aren’t worse because a Nazi did it first. The Nazis hold the place in our collective anger, fear and hatred because they did those awful things as a democratically elected (at least at first) and widely supported political movement and governing structure. They weren’t just awful people. They tried and succeeded within their own culture in making bigotry a culturally moral imperative.

So while the parallel is clearly troubling and uncomfortable. People who hold or have held feelings of superiority because of their specific Asperger’s diagnosis are still bad but no worse simply because we now know that Asperger was a Nazi. Their misdeeds are their own.

As for people who simply identify as Aspies because it was a way to claim community, the answer is less clear. While people should be able to identify however they want and Asperger’s name being attached to their diagnosis was a decision made in the 1980s by someone who wasn’t Hans Asperger. Asperger never put his name on the condition, it isn’t a way of claiming ownership or being given ownership of the people who have that label. So in that context, the term Asperger’s is relatively neutral. However, while people may individually decide that they are still comfortable with the label, they can’t force other people to be.

These revelations will inevitably stigmatize the name generally. More specifically because of how many different marginalized groups were targeted by the Nazis, there are just a lot of people who will understandably want to distance themselves from any reminder of that history of violence and genocide.

I suspect that we will see far fewer people identifying as Aspies. This has I think already started since already fewer people will be hearing that term at the point of diagnosis because it isn’t an official diagnosis anymore.

As a final thought…

Can people just stop naming medical diagnoses after the people who first categorized them? Particularly if the term is being changed specifically because that scientist gave it a horribly offensive name, to begin with.

It’s bad enough that people try and define us by our diagnoses. We really don’t need to be defined by our vague association with the people who first studied us too.

 

 

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I Like That, I Want That, Can I Have That?: When NonAutistic People Don’t Understand Autistic Communication and Punish Us For It.

When I was a child and I answered the phone I didn’t say “hello”, I said “What?”. My mother was constantly horrified at my supposed rudeness and would try and make sure that someone, anyone got to the phone before me.

The thing is though, that I wasn’t being rude or at least I didn’t think so. I was just responding to people on the phone the same way I would to someone who called to me from somewhere else in the house.

When my mother wanted me for something, she would yell my name from the foot of the stairs and I would respond with “WHAT?” I was never penalized for this and I just assumed that if someone was calling you then asking them what they wanted was kind of useful information to gather. I wasn’t trying to be rude. I was just transferring how I communicated in person to how I communicated on the phone.

If someone called to me in person, I responded with “what?” or “yeah?”. No one bothered to explain to me the difference of in person communication and communicating on the phone. So I kept getting in trouble for how I answered the phone and I never understood why.

I was always being told I was being rude when I couldn’t figure out why. It was only years later that I realized that because of the ways neurotypicals have coded language, they always interpreted the words I said as meaning something else.

This is most clearly noticeable in how I used the phrases “I like that”, “I want that” and “Can I have that?”. To me, those things express three different things but apparently to everyone else they only mean two.

Every time I said “I want that” people acted like I was asking for whatever I was referring to. I wasn’t. There was no request in the statement. I hadn’t asked for it. I was conveying the level of how much I liked it. It was an expression of envy, not demand.

While it’s true that I probably wouldn’t have complained if I was handed the object of desire, I understood that asking for things was rude. I was also aware that if I simply said that I liked something, that people would not know to what extent that I liked it. Was it something that just gave me fleeting pleasure or was it something that I would think about and remember and miss.

After, what was probably well over the hundredth time that I had been lectured about not constantly asking for things when I had simply expressed that “I wanted something”. I explained the difference in how I used language. I explained that I wasn’t asking for whatever trinket had fascinated me but differentiating between the things that I simply liked and the things I actively wanted to own. I understood that I wasn’t going to be given the thing.

This, however, didn’t build a bridge of better communication. It created a flustered lecturer who couldn’t figure out how I had come to think that words could be used so literally. I just had to be forced into more standard patterns of communication.

These distinctions may seem obvious or less rude now in a world where it is not uncommon for people to publicly declare a desire for things that they probably won’t ever own. A single all caps “WANT” in a tweet quoting another tweet featuring a luxury item is pretty common on Twitter. Or that same “WANT” posted as a comment on Facebook or Instagram is also a not infrequent occurrence.

At least I was using full sentences and expressing my desire with significantly calmer.

Nondisabled people far too often defend poorly conceived acts of “solidarity” that miss the mark by drawing attention to their intentions. They want to avoid consequences for the impact of their actions because they “didn’t mean it”.

Autistic people do not get the privilege of cloaking themselves in the armour of intentions even if their faux pas is just a failure of empathy and accommodation on the part of the person castigating them.

Autistic people have long been characterized as unempathetic little shits who lack theory of mind (the ability to place themselves in the shoes of others). Much new research rejects this and theorizes a different issue.

The Double Empathy Problem which posits that misunderstandings in communication are a two-way street, as much hampered by nonautistic people’s inability to empathize with autistic people.

Even though I could explain what I meant, I was miscommunicating and was rude. There was only ever need for me to change. Not the person who consistently and often willfully misunderstood me. They knew what I meant. I’d explained it clearly but I had to shift into an imprecise way of speech that was completely unnatural to me. It’s not something that I mastered until after I was diagnosed and could understand why I behaved differently than society expected me too.

The fact that I had a biologically ingrained reason for being the way I was, rather than a society which just uncritically follows and enforces cultural mores was irrelevant. The onus has always been on me to change to suit the comforts of neurotypicals. They never have to hold space for discomfort. They never have to hold awareness of me and my fellow autistics. They get to categorically define our behaviour as rude and wrong so that they do not need to empathize with us. We however, must constantly hold all that space and all that knowledge of their confusing expectations. They demand empathy without reciprocation. It is a wholely unequal power dynamic.

It is a battle we will inevitably lose because we are fighting against our very natures, simply to be allowed to exist in common space with neurotypical people and it’s a losing battle to fight your biology. We will always fall short of expectations and our “rudeness” is used to justify our exclusion.

 

 

How to support my work

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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.

 

How to support my work
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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?

 

 

 

 

#ActuallyAtypical: a Media Roundup of #ActuallyAutistic Thoughts on the Netflix Series Atypical

Reviews

Alternate Atypical: Reimagining Netflix’s Atypical if it were Written by Actually Autistic People

“For some reason, Netflix has classed all of this as a dramedy. The thing is it actually has the basic structure of what could have been a pretty good gritty drama. The show presents Sam and his actions as inherent and unavoidable because he is autistic.And sure there are autistic men who display the same degree of entitlement and sexism. The thing is that this is learned behaviour. So I have tried to reimagine Atypical as if it actually dealt accurately and honestly with what is going on.”

Netflix’s “Atypical” Was a Major Disappointment for Autism Representation

“Netflix did not confirm whether there were concerted efforts to include autistic writers, creatives, or actors in any large roles. Onscreen representation isn’t the same as behind-the-scenes representation, especially if that camera-facing depiction is flawed.”

Netflix’s “Atypical” is offensive, but that’s not its real problem

“On one occasion, when he is about to lose his virginity, he has a freak-out in which he punches a girl as she takes her shirt off. Another time, when trying to seduce his own therapist (ick), he breaks into her house by sneaking into an open window. Elsewhere, he humiliates his girlfriend by proclaiming that he doesn’t love her in front of her entire family.

These aren’t classic signs of autism — they’re violent, creepy, cruel and make the autistic character seem like a monster. When the show then shifts gears to make us feel sorry for Sam, the characterization becomes more offensive. Arguing that those with neurological conditions shouldn’t be held accountable for hurting others is as patronizing as it is socially irresponsible.”

Sarah Luterman has done episode synopses of all eight Atypical Episodes on the website NOS Magazine

Episode 1

“Sam then points out that his therapist’s bra strap is showing, and it’s purple. For some bizarre reason,  Julia doesn’t tell him that this is an inappropriate thing to do. The scene caps off with Julia asking if Sam would like to donate his brain for research purposes. What kind of research? Apparently that isn’t important. She then reassures him that she means she would like his brain after he dies.”

Episode 2

“As Sam narrates how roosters attract hens for mating by putting on a display, we get a flash of Sam’s mother, Elsa, in the bar, seriously considering infidelity. We get more Discovery Channel narration from Sam as his sister waves to the boy she’s interested in. He’s come to watch her track practice. This is dehumanizing. And it’s not just Sam doing the dehumanizing. It’s the show’s writers, making deliberate choices to juxtapose Sam’s discussion of animal mating with human women.”

Episode 3

“In the kitchen, Sam narrates to himself about how humans can’t be perfect because we’re not machines, thereby checking off yet another square for autism stereotype bingo. Some on Twitter have suggested that I create an autism stereotype drinking game for Atypical, but I don’t want to be responsible for any deaths from alcohol poisoning.”

Episode 4

“Elsa gets a text from Nick the Bartender, lies about it, and then accidentally drops her phone, insuring that she misses her daughter’s race. Somehow, this is autism’s fault.”

Episode 5

“A core part of the family dynamic on Atypical is that somehow, Sam’s autism makes everyone around him’s life worse. How, exactly, is unclear. It seems that the mere fact of Sam’s autism negatively impacts everyone around him to a degree where any and all terrible behavior is excused and justified. It’s a completely toxic dynamic. It’s not funny. It’s not even sympathetic. It’s horrifying. I feel sorry for Sam. He’s not the only one who is poorly written and hollow. The people around him are too.”

Episode 6

“After six episodes of a show ostensibly about autism with dozens of characters, an actually autistic  actor, Anthony Jacques, has a bit part as Christopher, another autistic teenage boy. Apparently he originally auditioned to play Sam but didn’t get the part. Robia Rashid, the creator of the show, claims that instead, they hired the “best” actor for the role. The scene Christopher and Sam have together make the artificiality of Keir Gilchrist’s autism act even more obvious than usual. Admittedly, I don’t think that an autistic actor always has to play an autistic character. But in this instance, it would have lent authenticity and subtlety that Atypical completely lacks.”

Episode 7

“Doug takes Sam to Olive Garden to “case the joint.” This means Sam is exploring the space and the menu before his big dinner with Paige’s family. For once, I actually find Sam relatable, although his continued preference to ask people questions while making eye contact instead of just Googling the answers continues to be strange.”

Episode 8

“Treating women like sex objects is not a natural extension of autism. Limiting how often someone is allowed to talk about what they love is abuse, not a real relationship. Autistic women, autistic people of color, queer autistic people and transgender autistic people exist. Autism doesn’t cause families to fall apart. It isn’t even true that families with autistic children have higher divorce rates than the general population. The fact that Netflix could release something like Atypical and run a campaign like #FirstTimeISawMe at the same time shows that Netflix completely fails to understand what disability even is to the people who live it.”

Cultural Critique

Twitter Celebs who are Ableist and don’t even realise it

“The most annoying thing about the responses by Doctor Christian Jessen, a qualified medical professional in general medicine, infectious disease, travel medicine, and sexual health, is that it’s assumed by non-autistics―or allistics―that all medical professionals are experts on mental illnesses, diseases, developmental disorders, neurological conditions, and disability in general. I’m very sorry to inform all of you but you’re wrong. The only experts of a condition, illness, or disability are those who live with it or those who study it extensively and listen to those who have whatever it is they research.”

No, Bad TV Portrayals of Disability are Not Good Learning Opportunities.

“Hey everyone, you should totally watch Atypical  it’s super informative about autism except for the pathologizing of misogyny, the uncritical look at the cult of compliance, the portrayal of autistic people as one dimensional more uncritical takes on using disabled family members as props for personal gain, serious misrepresentation of effective therapy and interventions but yeah, you should totally watch it anyway”

Let me know in the comments if I missed anything.

 

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No, Bad TV Portrayals of Disability are Not Good Learning Opportunities.

Atypical Poster

Image Description: Promotional poster for Netflix series Atypical. The Main cast is lined up on the bottom of the screen Casey (Brigette Lundy-Paine), then only the top of Sam’s (Keir Gilchrist), Doug (Michael Rapaport), and Elsa (Jennifer Jason Leigh) a cartoon thought bubble surrounded by penguins is coming out of Sam’s head featuring the show title and release date (Aug. 11)

“Hey everyone, you should totally watch Atypical  it’s super informative about autism except for the pathologizing of misogyny, the uncritical look at the cult of compliance, the portrayal of autistic people as one dimensional more uncritical takes on using disabled family members as props for personal gain, serious misrepresentation of effective therapy and interventions but yeah, you should totally watch it anyway”

I wrote the previous paragraph on Twitter yesterday in response to someone who suggested that despite Atypical’s extremely problematic portrayal of autism that it was still a tool for learning.

teaching tool

Image Description: A screenshot of a tweet with the tweeter redacted. It reads “Us NTs could use a little awareness. No show will ever completely encompass such huge important topics. But they plant curiosity to learn +”

The problem with Atypical isn’t that it’s merely imperfect. It’s loaded with stereotypes and misinformation. This tweet positions autistic people’s concerns about Atypical as merely whining and an unreasonable demand for perfection rather than the actual protest that it is against the genuinely harmful messages of the show.

I am however going to focus on the last assertion of her tweet, that the show and shows like it create genuine curiosity to discover the truth about the marginalized peoples being misrepresented.

This is patently false. The actions of this person actually exemplify that. This tweet only came about because autistic people had pushed back against their uncritical demand for a second season. It also came after their original rebuttal of “If you don’t like it you don’t have to watch it”.

This latter argument entirely ignores the harm that can occur if people watch harmful portrayals of disability and believe and internalize those messages. Disabled people don’t have the luxury of just ignoring harmful representation. We need to know what happened so we can challenge it.

The fact that they originally wanted me to just check out is entirely indicative of someone who didn’t want to engage with the show in a critical way. The later suggestion that people might use it as a jumping off point to learn about autism was just a last ditch effort to try and deflect uncomfortable criticisms about something they enjoy. They didn’t want to have to potentially feel uncomfortable about the implications of the media they consume.

I have yet to see op-eds about individuals who have watched Atypical or any other awful portrayals of disability that talk about how the show inspired them to take a deep dive into the autistic community and then truly learned something.

The critical pieces I see come from disabled people themselves or from writers who have seen the backlash and are reporting on it and this is by design.

In the last five years or so, disabled people pushing back against awful portrayals has been getting more mainstream attention. (see the pushback against the film Me Before You as the perfect example). This hasn’t resulted in better disability portrayals but it has changed how disability portrayals are marketed.

Now it is almost inevitable that presenting a disability portrayal as accurate and authentic will make up in some part of the marketing of that film or television show. This is certainly true of Atypical where show creator and writer Robia Rashid gave an interview which hinted at a personal connection to someone with autism and where she talked about all of the consultants and parents of children with autism that will present on the sets. She talked about how neurotypical actor Keir Gilchrist had previously worked with autistic children.

We saw the same phenomenon with the film The Accountant. A film, I will remind you whose entire plot revolves around an autistic accountant who was also a skilled and dispassionate killer (he is often described as a hitman, however, at no point in the show or in his back story is he actually ever explicitly paid to kill somebody). Even this ridiculous character whose description is so unbelievable was treated to the veneer of authenticity by their marketing department.

The people making the shows and films are already controlling for the off chance someone will become curious about the genuine authenticity of the portrayal. They are building in safeguards to actually mitigate curiosity. The goal of these portrayals is that they be accepted at face value and they are.

true representation

Image Description: A screenshot of a tweet that reads “@Atypical is such a true representation of autism, I really hope it raises awareness and gives people a better understanding” it closes with a clapping emoji

The person who wrote this tweet later told me in a tweet which they quickly deleted that they had an artistic brother and that’s how they knew how “authentic” it was. considering that the tweet was deleted so quickly that I couldn’t get a screenshot of it I remain sceptical of this claim, though it is far from impossible. The family members of disabled people can, unfortunately, be a major source of misinformation and misunderstanding of disability.

people first

Image Description: A screenshot of two tweets with the original author’s information redacted by images of a tennis ball and of floppy disks (I got the screen shot off of Twitter). The first tweet reads “the “people first” language in this show!!! @Atypical this is so awesome! person then diagnosis! “Child with autism”, not “autistic child”. Second week which is a response from the same author to the first rates “such a huge step forward in the normalization of the importance of mental health! and representation!!”

it is not hard to find autistic people who prefer identity first language. It is widely held to be the predominant preference of the autistic community. So the fact that this individual was celebrating people first language which is contrary to that fact that only shows that they don’t know better but that they will use the show to validate their preconceived notions around language and identity in ways that invalidate autistic people and their preferences.

These are pretty representative of the sorts of comments that portrayals of disability will receive from nondisabled people. They are their internalization’s of that media’s messaging or they will use that media to validate their preconceived ideas. As Twitter user @sorrysorryetc pointed out, the show was so poorly written that it was  often unclear what the intended message was particularly as it pertains to language usage so people are just going to end up taking what they want from the show and not actually interrogating whether or not they have interpreted it correctly or whether the show was wrong entirely.

The mere existence of bad portrayals of disability are not learning opportunities. Watching these shows can be educational if it is done with a critical eye and if it is being fact checked with the people being presented.

For the shows to be truly educational they would need to be accompanied by a comprehensive syllabus and lessons learned would likely not be about disability itself but rather how media helps to construct oppressive systems around disability by misrepresenting them to an audience that is assumed to be nondisabled.

 

 

If you liked this post and want to support my continued writing please consider buying me a metaphorical coffee (or two or more). Donations help me keep this blog going and support my ongoing efforts to obtain a PhD.

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