Autism Awareness Month in the Time of Covid-19: Support Actually Autistic People…Seriously

Image Description: Photo of a blackboard that says "Support #ActuallyAutistic People" with a multicoloured infinity symbol at the bottom
Image Description: Photo of a blackboard that says “Support #ActuallyAutistic People” with a multicoloured infinity symbol at the bottom

Once again April is nearly upon us and along with it the baggage of Autism Awareness Month. Autistic people often dread April with it’s frequently dehumanizing rhetoric about us and a focus on Autism Charities that are often very unpopular with the people they claim to support. April often seems less about raising awareness for autistic people (whatever that actually means) and more a very pervasive fundraising campaign for Autism Organizations whose goals and actions are often in opposition to those of autistic people.

Autistic people exist, you are now aware, can we move on to acceptance and meaningful inclusion and support now?

Traditionally, April is full of people “Lighting It Up Blue” a campaign created by Autism org Autism Speaks. Puzzle piece imagery also abounds which is also largely associated with Autism Speaks but which has become so synonymous with autism that many organizations use it. It is a common feature in April Autism fundraising campaigns. I have seen puzzle piece pedicures which raised money for an organization that had no autistic representation in its governance.

Each year many autistic people protest the corporatization of autism initiatives. We protest the use of the puzzle piece to represent us as we believe it implies that we are broken and require putting back together. The negative associations of puzzle piece iconography has been backed up by research.

Autistic people tend to prefer the symbol of a rainbow infinity symbol which celebrates neurodiversity.

Image Description: Infinity symbol in a rainbow gradient
Image Description: Infinity symbol in a rainbow gradient

One of the most common issues of contention is the continued popularity and public support for Autism Speaks which is so unpopular in the autistic community that many consider it a hate group. We have been explaining why for years. There are many accounts by autistic people explaining their continued dislike of the world’s largest autism charity. There are even videos.

Yet, every year when an autistic person expresses dread of April and the inevitable inundation of Autism Speaks fundraising, we still get asked why?

This year is different though. This year we are heading into April in the middle of a global pandemic. This year might offer autistic people a brief reprieve from what many of us have renamed “Autism Bewareness Month”. It will be harder for organizations like Autism Speaks to roll out their huge campaigns in a world that is social distancing (something that autistic people are really good at by the way).

That does not mean that the world should look away from autistic people this April. This year is instead an opportunity to refocus on supporting autistic people more directly.

I know that I am not alone as an autistic person in experiencing a heightened state of financial anxiety as a result of social distancing. I also have a physical disability that adds nutritional anxiety as I cannot grocery shop on my own both because of physical barriers and that I am a higher risk for serious coronavirus infection.

Many of us might already be champions at social distancing but we are particularly at risk of extreme poverty and not being able to find the supports we need to get through this pandemic safely.

So this year I would ask that if you are able that you directly support autistic individuals and organizations that are run by and for autistic people.

You can support me by sending me money directly through paypal (I will include more ways to support me and my work at the end of this post).

You can also support autistic creator like Amythest Schaber (whose video can be viewed earlier in this post). Amythest is also an artist with a shop on Redbubble where they sell beautiful autism and disability inspired art.

Image description and art print of the word Neurovidersity in a rainbow gradient with sparks like neurological connections on a black background. It can be purchased here

There are also autistic authors who write beautiful autistic characters. I recommend On The Edge of Gone by Corinne Duyvis.

My friend and amazing writer Sarah Kurchak has a memoir coming out on April 18, and the book launch has been cancelled due to coronavirus but you can and should preorder her book I Overcame My Autism and all I Got was this Lousy Anxiety Disorder. Autistic comedian extraordinaire Hannah Gadsby is a fan.

Image description: Book cover for I 
overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads "A treat to read, I'd recommend this book to anyone who struggles to connect to the world, even if you don't call that struggle Autism"  A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.
Image description: Book cover for I
overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads “A treat to read, I’d recommend this book to anyone who struggles to connect to the world, even if you don’t call that struggle Autism” A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.

You should also go watch Gadsby’s phenomenal comedy special Nanette on Netflix.

These are just a few of the amazing autistic people you could be supporting and learning from this April. We are sheltering in place after all, what else are you going to do?

Aside from directly financially supporting autistic individuals, you can also support better autism organizations whose leadership is full of autistic voices and whose goals more clearly support the wellbeing of autistic people. Organizations like The Autistic Self-Advocacy Network, The Autistic Women & Nonbinary Network, and Autistics 4 Autistics.

In the midst of the stress and fear that this pandemic has caused please don’t forget autistic people this April. Use the opportunity of the time afforded by social distancing to learn more about autistic people from autistic people rather than making a shallow visual show of support that benefits a charity more than the people who require the support.

Let’s get past autism awareness and move on to autism acceptance and inclusion.

How to Support Me and My Work

The outbreak of COVID-19 has created a lot of financial precarity for me, so I would really appreciate any assistance you are able to offer

Please if you are able help the most vulnerable in your communities by practicing social distancing responsibly and by not hoarding resources.

I personally am experiencing financial difficulties as a result of Covid-19 and would appreciate any assistance you can offer, even if it’s just to share this blog post.

If you are able please consider helping me financially during this time. My situation is quite precarious.

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

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

So now for the very in-depth appeal for support for mu PhD. Please read through this, there are so many ways to help, including just sharing this blog post on social media.

Kindle ebooks read on my iPad are the easiest way for me to read and take notes unfortunately Amazon does not allow people to buy ebooks for others through their wishlist system. I have an Amazon Wish list anyway as some of the books can only be purchased in print or from third party sellers because they are out of print. If you could buy me one of the books that can only be had in print, I would greatly appreciate it. If you want to help fund the ebooks I’ll need you can buy me a gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

Become a Patron!

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites)

I also have a generic disability wish list of things that would just improve my quality of life

Thank you for your ongoing support. and just an FYI I’m changing my name socially to Kimberley Jane Erin. You can call me Kim or Jane but I prefer Jane. I am however, not the least uncomfortable with Kim so don’t worry about messing up.

It’s time I really leaned into my identity as a scholar. I hope you’ll support me

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.

 

 

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

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

Buy Me a Coffee at ko-fi.com

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

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?

 

 

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

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

Buy Me a Coffee at ko-fi.com

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

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

 

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

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

Buy Me a Coffee at ko-fi.com

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

#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?

 

 

 

 

My Son’s Swim Coach’s Second Cousin’s Wife has a Student With Cerebral Palsy: The Disability Anecdote

The disability anecdote is something that I’m sure most if not all disabled people have faced.

At its most basic it can simply be someone, having discovered they are in the presence of a disabled person who feels compelled to create some bizarre sense of false common ground.

The scenario generally involves a nondisabled person finding out that you have a particular disability.Perhaps as a result of casual conversation but more likely because they have asked an invasive question. One that has very likely been phrased some thing like this,

“I’m sorry. I don’t mean to be rude but what wrong with you/your [insert visible characteristic of disability]”

If the disabled person is cooperative or just doesn’t want to deal with the backlash of refusing to answer and actually obliges the questioner with their diagnosis it is not uncommon for the nondisabled person to then respond with.

“Oh my [insert vague and often several degrees separate aquaintance] with that/some other disability that they perceive to be similar but probably isn’t”

They then look at you expectantly and I for one still have no idea what to do with these interactions. Do people really expect to be congratulated for being able to come up with a single example of another disabled person that they or just as frequently someone they know has encountered at some point?

Are they trying to tell me that I am not alone?

Are they trying to tell me that they are not completely ignorant of disabled people?

If the latter, they are failing just through their approach. Yet, nondisabled people seem to love to share these anecdotes which prove nothing more than how invisible disabled people are to them. Seriously, considering the percentage of the population that is disabled (generally measured around 20%) these anecdotes really just show how far we have to go in terms of visibility and public access.

These instances are troubling but they are also a more benign (on a very malignant spectrum) version of the disability anecdote.

These anecdotes also come up in opposition to disability rights activism. They most often come from nondisabled people but are also offered by disabled people whose disabilities may differ from that of the people doing the advocacy. These anecdotes generally go like this,

Disabled person: “This action/image/policy is particularly harmful to people with X” (often followed by a list of reasons and evidence of that harm)

Nondisabled person/person with different disability: Well I know someone with X and they are perfectly fine with it”

These interactions are infuriating because they are entirely premised on the idea that the opinions of disabled people can be trumped by the mere mention of a possible counter opinion by a different disabled person. This false idea also appears in conflicts that occur between disabled people–“well I’m also disabled and I don’t agree with you so…”–but in those cases, they can be challenged or the detractor can be asked to justify or explain their position. When the hypothetical disabled person (and yes I often doubt they actually exist) is just an anecdote, the argument hinges entirely on the fact that there exists an alternate viewpoint not on whether that viewpoint has merit or can withstand questioning or scrutiny.

The implied rightness of this hypothetical opinion tends to be based entirely on the fact that it continues to allow the maintenance of the status quo. A disabled community asks for change and someone pops up to say that no change is necessary because “they know someone with that disability”.

An absent disabled person whose opinion cannot be challenged or even confirmed and yet is expected to be not only believed and respected but adopted.

It is particularly frustrating when these anecdotes come from parents who use their disabled children as weapons with which to beat disabled adults.

In these cases, I always wonder

Does the child actually think this?

Is the child old enough to think critically about this issue?

Regardless of age, where and from whom is the child learning about disability as a lived experience?

Does the child have access to alternate opinions or is it safe to assume that they may be parroting opinions on disability that they have been presented by their parents and broader social group?

Does that social group include people with disabilities?

I have these questions because as a disabled adult my understanding of disability has changed drastically from what I thought as a child. I fully acknowledge that many of the views I held back then were toxic and built on internalized ableism. I simply did not have the critical thinking skills to do anything but accept the worldview I was offered by the almost exclusively nondisabled people around me.

And yet, disabled children are effective weapons against disabled adults because it is not acceptable to publicly question them. You cannot reasonably ask parents who claim to speak on behalf of their children to produce them for confirmation and clarification.

Even when the anecdotal disabled person is an adult it’s considered inappropriate to question the validity of their argument too closely. This is a direct result of the paternalistic ideas around disability that society holds. You are not supposed to overtly and publicly challenge disabled people even if you yourself are disabled. It is often perceived as an unreasonable attack.

So anecdotal disabled people continue to be an effective weapon against calls for systemic change. They may not be effective at changing the minds of the disabled activists their hypothetical views are used to oppose but they are popular with those who do not want to change. Those people can be comforted that they need take no action. That they need not interrogate the way they think about disability.

I see these anecdotes in all their shades so frequently that I also wonder, how often am I being used as precisely that anecdote (because odds are that I am) and by whom? What views are being attributed to me when I’m just someone’s neighbour’s second cousin’s wife’s former swim student with cerebral palsy/autism?

How to Support My Work

So now for the very in depth appeal for support for mu PhD. Please read through there are so many ways to help, including just sharing this blog post on social media.

Kindle ebooks read on my iPad are the easiest way for me to read and take notes unfortunately Amazon does not allow people to buy ebooks for others through their wish list system. I have an amazon wish list anyway as some of the books can only be purchased in print or from third party sellers because they are out of print. If you could buy me one of the books that can only be had in print, I would greatly appreciate it. If you want to help fund the ebooks I’ll need you can buy me a gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

Become a Patron!

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites)

I also have a generic disability wish list of things that would just improve my quality of life

Thank you for your ongoing support. and just an FYI I’m changing my name socially to Kimberley Jane Erin. You can call me Kim or Jane but I prefer Jane. I am however, not the least uncomfortable with Kim so don’t worry about messing up.

It’s time I really leaned into my identity as a scholar. I hope you’ll support me