Bill Nye Saves the World from Disabled People

Bill Nye Saves the World

Image Description: Bill Nye a 61-year-old white man with grey hair stands atop the earth with his hands on his hips and lab coat billowing out behind him like a superhero’s cape in a promotional image for his Netflix series Bill Nye Saves the World.

When I first heard that Bill Nye would be starring in a new Netflix series, I was initially excited to relive some 90s nostalgia. The show is geared precisely towards us 90s kids who grew up watching Bill Nye the Science Guy. Unlike the show of my childhood, however, Bill Nye Saves the World is entirely geared toward Nye featuring topics that have a global impact. The first episode deals with the politically contentious but generally scientifically accepted topic of climate change. Another episode deals with sex and gender and debunking myths around how sex & gender are binaries.

I, however, became concerned when I noticed that there was an episode on Designer Babies. A concern that was confirmed when I watched the episode.

The episode deals with issues pertaining to in vitro fertilization (IVF), genetic testing and gene editing. All three but the latter two especially have implications for disabled people but Nye and his guests only look at the implications for nondisabled people often in the context of the presumed negative impact of not being able to choose to not have disabled children. There is no discussion of the impact of such technologies on disabled people themselves even though both Nye and his guests acknowledge that not all disabilities can be tested for and thus screened out.

The episode starts badly with a somewhat off topic shoutout to Victorian evolutionary scientist Alfred Russel Wallace. Nye mentions him because he feels that Wallace has gone unrecognized for his contributions to helping create the theory of evolution.

Nye only asks but does not really engage with the question of whether gene editing is either playing God or toying with evolution. It is, however, worth looking at particularly with his shout out to Wallace.

Alfred Russel Wallace like many early evolutionary theorists (Darwin included) used the theory of evolution to shore up arguments of white supremacy. He believed that white people were so superior that eventually, non-white people would die out along with less desirable members of the white population to eventually create a utopia that did not suffer from any social ills*.

John Langdon Down would later expand on that to explain how the clearly superior white race could be tainted with congenitally disabled members. Down theorized that white people were more evolved than other races and that intellectual disability was actually an evolutionary throwback that proved this. He wrote,

Here, however, we have examples of retrogression, or at all events, of departure from one type and the assumption of the characteristics of another. If these great racial divisions are fixed and definite, how comes it that disease is able to break down the barrier, and to simulate so closely the features of the members of another division. I cannot but think that the observations which I have recorded, are indications that the differences in the races are not specific but variable.

These examples of the result of degeneracy among mankind, appear to me to furnish some arguments in favour of the unity of the human species**

John Langdon Down used this theory when he categorized what is now known as Down Syndrome but was originally classified as Mongolian Idiocy.

The history of evolution is full of white men arguing that they are somehow superior and classifying difference as inferior. These classifications had a real social impact on the people being classified. It helped shore up institutional racism. Gave birth to the eugenics movement and has lead to genocide.

This is why looking at the social impact of science on the people being classified as undesirable is so imperative.

Bill Nye however, does not do this instead the only social impact of genetic testing and gene editing given in the episode is the impact on the people doing the classifying. The overall assumption is that disability is bad and that avoiding it is inherently good. So when they consider the potential negative impact gene editing they look at the cost and the people for whom that cost will be prohibitive. They do acknowledge that this disparity in access will almost certainly benefit white supremacy. The downside as it is presented is only that poorer families (who will invariably be disproportionately families of colour) will lack access to the options of gene editing and thus be burdened with disabled children.

The show does not at any point consider the potential social repercussions of gene editing on disabled people themselves.

They do not consider what the ability to choose to not have certain kinds of disabled children (because they do acknowledge that not all disabilities can be tested for) will mean for disabled people whose conditions cannot be edited out.

They do not consider how the economic disparity in access to gene editing technology will expand existing economic disparities for disabled people.

They do not consider what happens when the technology fails because nothing has a 100% success rate. What of the children who were supposed to be born “healthy” but weren’t.

What will this mean for people who acquire disabilities (a population that exceeds the number of people born disabled)?

In a world where disability is not only almost universally considered bad and which contains options to opt out of having disabled children, will support for accessibility legislation like the ADA or AODA continue?

Bill Nye considers none of those questions because they are social ones, not scientific ones. This is the problem with a purely scientific discourse. It ignores the social impact.

At the beginning of the episode, Nye acknowledges the possibility of a slippery slope but he dismisses it by saying that a slope needn’t be slippery. He, however, does this despite forgetting to acknowledge the humanity of disabled people or their very real stake in this conversation. We are to Nye best served by not existing in the first place. It somewhat robs his argument of weight.

No disabled people were included in the episode.

 

 

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*Wallace, Alfred R. “The Origin of Human Races and the Antiquity of Man Deduced from the Theory of “Natural Selection”” Journal of the Anthropological Society of London 2 (1864): Clviii-lxxxvii. JSTOR [JSTOR].

**Down, J. L. H. “Observations on an Ethnic Classification of Idiots.” London Hospital Reports 3 (1866): 259-62.

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Open Letter to the Autism Society Regarding Your Decision to Honour Ben Affleck

AutFest

Image Description: Aut Fest Logo, the words Aut Fest appear in white on a black clap board (like they use to differentiate takes on film shoots)

 

Dear Autism Society and Organizers of Aut Fest

I am writing to you as an actually autistic person who is very concerned about the fact that you have chosen to honour Ben Affleck at Aut Fest. Beyond the fact that The Accountant is full of horrific stereotypes. Affleck’s opinion of the role and how autism should be portrayed is deeply problematic (see here and here). Affleck’s inclusion not only hurts autistic people it suggests that you as an organization are ok with that in order for the attention his name will bring.

As a woman, I am also concerned about celebrating Ben Affleck in light of the fact that he actively shielded his brother from accusations of sexual assault & harassment. I want to live in a world where that kind of behaviour is not tolerated and where people who exhibit that behaviour are not honoured in ways that suggest that they are humanitarians.

It is of course also utterly ridiculous to honour a neurotypical actor for playing an autistic character as though this is groundbreaking humanitarian work. It is not. It is not brave. It is not a sacrifice. He did an acting gig for which he was paid. An acting gig that as I’ve previously mentioned utterly threw autistic people under the bus. It was an acting gig that as a consequence of being performed by Ben Affleck was not performed by an autistic actor. This further normalizes the idea that Hollywood should not actively seek to employ autistic actors or disabled people in general. It also solidifies the idea that it is appropriate and beneficial to have neurotypical people at the helm of telling stories about autistic people.

So, what then are you honouring Affleck for?

Is it because he said nice things about autistic people while he did media appearances for the film?

You know that’s actually part of his job, right? It’s advertising, not activism. It would not have been helpful to the film’s bottom line if he didn’t mention the film’s gimmick plot point.
It wouldn’t have gone over well if he had said that autistic people were evil. Particularly, because they were trying to sell the lie that his performance was authentic. The research and visiting autistic people was part of the PR campaign. It’s just unfortunate that the content of the film undermined those public assertions but again it was advertising, not activism.

So, I’m generally just confused as to what you are honouring for as he is just someone who did a job for which he was paid. As a result of doing that job, he reinforced stereotypes about autism, took a job that should have gone to an autistic person and told a story about autism that wasn’t his to tell.

The fact that you would capitalize on Affleck’s star power despite these concerns suggests that you are more interested in donations than you are in actually helping autistic people. I hope that you will reconsider your decision but know that as long as you don’t that you are not only not helping me (an actually autistic person) and are actively misrepresenting me.

Sincerely,

Kim Sauder

PS: Further reading on this

How ‘The Accountant’ Victimizes The Autistic Community

Autism Society Celebrates … Ben Affleck?

From Amy Sequenzia

 

 

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I have Cerebral Palsy and I Tried the Cerebral Palsy Foundation’s New Fitness App

March is as I’ve been repeatedly made aware Cerebral Palsy Awareness Month–please take a moment to pause and simply be aware of my existence–as a result, there have been awareness campaigns (usually in the form of patronizing memes) that pop up in my social media feeds.

There has been one that I was particularly interested in, though. The Cerebral Palsy Foundation announced early in the month that they would be launching the CPF Challenge, a fitness app which would include modified exercises for various mobility needs.

I have written before about my own difficulties in finding accessible fitness options and about how disabled people are used as examples of the things that will happen to nondisabled people if they don’t maintain healthy lifestyles. So I was cautiously excited about this app.

Video Description: The video features both a personal trainer and two individuals with cerebral palsy demonstrating various interval style exercises. There is text that advertizes the CPF Challenge and it’s daily 7 minute workouts.

I was only cautiously optimistic because the app was not simply something to fill a need for more accessible fitness options but also a fundraising exercise for the Cerebral Palsy Foundation.

I have been sceptical of the CPF ever since it launched it’s deeply patronizing and seriously ill-advised “Just Say Hi” campaign. A campaign that they still advertise on their website.

The CPF Challenge is supposed to be undertaken over 21 days with participants joining online teams to compete to raise the most money while doing the 7 minute workout every day.

Beyond the fact that my feelings toward the CPF are ambiguous at best and I’m not particularly bothered about raising money for them, the three week timeframe has me concerned.

This is clearly a fundraising initiative for them so I worry about the long-term usability of the app. While I hope that it will still be possible to access workouts after the campaign has run its course, the CPF has not confirmed this. This is also the sort of thing that could be useful long term and benefit from ongoing updates but it is also unclear whether the CPF are going to continue investing in it as a tool to help people stay fit rather than a simple fundraising tool.

I downloaded the app yesterday as the functionality only started on the 25th in keeping with its function as a fundraising tool. I immediately hit a problem, despite the fact that it was the 25th of March yesterday and it was also the day I downloaded the app, the app was out of date and was convinced that it was still the 24th and would not work.

I was so confused by this that I didn’t trust my own knowledge of the date or the calendar on my computer. I actually googled the date just to confirm that I was, in fact correct. After receiving confirmation I checked the app store for an update which there was. My app was finally ready to use.

It is clear just by opening the app that it’s primary function is as a fundraising tool and not a fitness app. This is the opening screen.

2017-03-26 12.55.06

Image description: Home screen of the CPF challenge app. It has blue text on a white background and is separated into three sections. The top is for personal workouts completed while the second is for workouts completed by the user’s fundraising team. Both sections include a workouts completed status bar and a fundraising status bar. The bottom third is topped by a large Fundraise Now button which is followed by options to look at achievements and a challenge calendar. The very bottom has a blue button with white text that reads “begin today’s workout”

In order to make the workout accessible, users have to go to the workout library and unselect the options that are inaccessible.

2017-03-26 12.55.34

Image description: CPF Challenge exercise library that lists various interval exercises and a toggle on the right to indicate whether the user can do that particular action or not. On the bottom is a blue button with white text that reads “review all exercises”

In case you aren’t familiar with what the exercise name means you can choose to review all of the exercises which leads you to a silent video run through of them all with buttons that let you say yes or no to each. There is no audio description of the exercises in the exercise library.

While the app simply categorizes the exercises as a yes or no, I took a slightly different approach in which I classified them as

Yes, I can do that

No, I can’t do that

I think I can do some approximation of that without dying (We’ll see if I was right about that or not)

One of the first things that I noticed is that there are significantly more standard exercise options than ones that have been modified to consider different mobilities. Only 14 out of 57 exercise options are classed as “modified”. While I was certainly able to select yes or a tentative maybe to options from both the standard and modified offerings it was disheartening to see how few were specifically geared toward disabled bodies. And while it is entirely possible that other disabled users will like me find accessible options from within the standard list, it would have been nice to see more modified options. It’s also not clear whether CPF expects there to be crossover because all of the standard exercises are demonstrated by the nondisabled coach. Neither of the disabled demonstrators show anything but the modified ones.

It is, therefore, unclear how much actual functionality CPF expects disabled users to get from the app because not even all of the modified options were accessible to me and I expect that I won’t be alone in that. So disabled users are by design offered fewer options which is disheartening.

It is day two of the challenge and I have now done the 7 minute workout twice and I have some early observations (I might do a follow-up after the full 21 days let me know in the comments if you’re interested in that).

The workouts are 7 minutes which is broken down into 12 different exercises.

The workout is surprisingly effective for all that it is only 7 minutes. My thighs and calves are still in pain and I was even reticent to do today’s set because I was genuinely stiff from yesterday (yes, I know I’m really out of shape). Hopefully, I build up a resistance soon or I’m going to have to quit from the pain.

One thing I really wish was different and makes the workout inaccessible is that there is too little time between exercises. I am able to transition from a standing action to one that requires me to lay on the floor (and vice versa) but I can’t do it quickly. Particularly today because on top of my general lack of coordination I was stiff and sore from yesterday’s workout. I actually sat out of an exercise because I didn’t think I would be able to get down on the floor, do the action and get back up in the time allotted. The workout would be improved by doubling or even tripling the interim time (or by offering it as an option).

So far both workouts were identical but I expect that to change in the coming days as I did set more than 12 activities as things I was able to do.

I am unfortunately not optimistic as to how much functionality physically disabled users will get out of the app. I get the feeling that the CPF challenge is more something to be done on behalf of people with cerebral palsy than by people with it. The modified options feel more like a publicity stunt than something functional in its current form.

The app concept does have potential if they decide to continue investing time in the app by adding more modified activities, having the workout time lengthened to consider slower less coordinated bodies and showed the disabled presenters doing more of the demonstrations, showing where even the standard activities might be accessible.

I certainly hope that the Cerebral Palsy Foundation see this as a genuine opportunity to create something that could be useful to disabled people and fills a real need for more affordable and accessible fitness options. I hope that this isn’t just a publicity and fundraising campaign.

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. Or if you just want to support an actual person  with cerebral palsy in Cerebral Palsy Awareness Month.

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We Need Diverse Authors: A Review of Dancing With Ghosts

dancing-with-ghosts

Image description: Book cover for the novel Dancing with Ghosts by Emily Gillespie. The bottom two-thirds of the cover is black with the title and author’s name in white text. The top features a galaxy background with pinks, purples and blue speckled with stars. On the left side, three ballet dancers are captured in silhouette.

I have written before on the dangerous and problematic pitfalls of people writing about marginalized experiences that they do not experience. I am a huge supporter of not only diversity in books but more importantly diversity of people writing those books. So I was pleased to hear that my friend Emily Gillespie had written a book and that it was going to be published.

Emily has lived experience with mental health* and wrote a novel that deals directly with a character who is experiencing what is possibly depression and anxiety.

The synopsis from Goodreads is,

Freshman year of university was supposed to mean freedom.

It was supposed to be her escape from parents who didn’t understand her – who turned Patricia away every time she reached out for help. New city, new school, new friends, fresh start – wasn’t that how it’s supposed to work?

Instead, when Patricia moves from her small, isolating hometown to the bustling, sprawling cityscape of Toronto, she finds herself more alone than ever. When she meets Derek – an intriguing yet mysterious classmate – she’s instantly drawn in by his worldly knowledge and easy charm.

For a while, things between them are perfect. For a while, it’s thrilling being invited into a world unlike anything Patricia’s experienced before.

But this isn’t a love story and not everyone is what they seem.

Dancing With Ghosts is technically classed as adult fiction, though could be considered a young adult novel. The protagonist, Patricia is eighteen & nineteen throughout the novel and though the book does deal very frankly with issues of mental health, sex, and various kinds of abuse (sexual, emotional, medical); the story is very much something that can and does happen to young people.

The book is a first-person narrative written in semi-journal style (by which I mean the narrator will occasionally address the reader directly). As a result of the casual narrative style, the protagonist occasionally breaks off into tangents. This was a bit jarring at first but as you get to know the character it becomes natural and I eventually stopped being aware of it.

I really appreciated the way Emily approached mental health in the novel, from how it isn’t always strictly labelled as a specific diagnosis but the impact is still real. This indefinability is not only realistic it also really highlights the issues that Patricia has in trying to set up official support systems when she doesn’t fit neatly into a box. The book also challenges that smug Canadian lie that seems to crop up anytime that a Canadian is trying to prove their moral superiority (usually to an Americal) “Yeah? Well, I’m going to have my feeling checked for free”.

Emily effectively weaves a story about someone who tries and fails to seek timely and meaningful healthcare and the emotional fallout of being failed by a system that horribly ill-equipped to deal with the volume and reality of the needs it should be meeting.

Dancing With Ghosts is not the kind of book you read all in one sitting. Not because it isn’t good or engaging. It is both but it deals with issues of abuse so head on and frankly that sometimes I had to take some time to sit with what I had read before I could continue.

This is the benefit of a writer who has experience of the thing they are writing about. Eve when they write fiction, it feels more real. I feel the shared frustration of a medical system that frequently underserves or fails disabled people. I struggled with Patricia’s frank attempts to make sense of how the various factors in her life contributed to what happened. I searched for those answers with her.

This is why we need more voices from the margins. Not people speaking for the margins.

 

 

Dancing With Ghosts is currently available for purchase in ebook form through Kobo.

There is currently no official print release date (I will update when one is available) but print copies will be available on Amazon and at the York University Bookstore in Toronto.

Dancing With Ghosts is being published through Leaping Lions Books a small independent publisher run by York University’s fourth-year Professional Writing program.

The official book launch will be on March 9th. If you are in Toronto and are interesting in attending you can find information here.

 

 

 

*Her current preferred label

If You’re Disabled in an M. Night Shyamalan Film, You are either a Villain or a Supercrip (Mostly a Villain Though)

I long for the days when M. Night Shyamalan was still mostly associated with his flops. Only making movies because of a vain hope that he would rediscover his Sixth Sense heydey. I look back yearningly at that moment I was sitting in a movie theatre and the collective groan of disappointment that the audience emitted at the end of the trailer for Devil (2010) because all hope that it might be good had been spoiled when it was revealed that the story was created by M. Night Shyamalan (though he did not actually direct or write the screenplay)

Shyamalan has recently recaptured some of his earlier success with his most recent film Split (2016). The film centres on a villain, Kevin (played by James McAvoy) who has Dissociative Identity Disorder and 23 distinct personalities (with a supernatural 24th). He kidnaps and terrorizes three girls. The film epitomizes the trope of to be mad is to be bad. I am not going to go into a long breakdown of how awful this is. Many others have already done so and likely better than I could have.

kevin-split

Image description: Still from the film Split. The character Kevin (played by James McAvoy) walks dow an empty street at night. He is bald with glasses and is wearing black pants and a jacket. His hands are in his pockets (image source)

I am instead going to talk about how Split’s Kevin fits into a pattern of stereotyped disabled characters in M. Night Shyamalan movies. Characters who are usually bad but who occasionally also fill the supercrip role.

Split is actually (as it is revealed in the end) a sort of sequel to Shyamalan’s 2000 film Unbreakable. Unbreakable is another film that relies on a disabled villain. Elijah Price AKA Mr. Glass (Samuel L. Jackson) has Osteogenesis Imperfecta, a condition that causes brittle bones. Price is inspired to villainy by comic books (Isn’t Shyamalan Meta he creates a superhero universe where the villains are inspired by comic books *sigh*). He makes it very clear that his disability is a catalyst for his villainy. He reasons that if he is so fragile then there must be someone is as impervious to injury as Price is prone to it (because logic I guess). He goes around causing disasters with mass casualties until he finds his opposite. He discovers David Dunn (Bruce Willis) after Dunn is the sole survivor of a train wreck.

elijah-price-unbreakable

Image description: Elijah Price (played by Samuel L. Jackson) sits in a wheelchair in the aisle of a comic book store. He is holding up a comic in his right hand. He is wearing a grey sweater over a black turtleneck (image source).

Disability is so linked to villainy in Unbreakable that the hero is literally impervious to injury. He can never become disabled.

By linking Split and Unbreakable, Shyamalan has essentially created a superhero universe in which disability is synonymous with evil.

Shyamalan’s use of disability is not limited to these two films. It is also a theme in his biggest success The Sixth Sense (1999). The initial meeting between Cole Sear (Haley Joel Osment) and Dr. Malcolm Crowe (Bruce Willis) is set up as Crowe being Cole’s psychiatrist. But fear, not Haley Joel Osment is not another Shyamalan supervillain. He is not mad. He can actually really see ghosts. The film does not, however, avoid the insinuation that mad is bad. In the scene where Cole finds the evidence that a child–who had presumably died of some unknown prolonged illness–had been murdered by her mother through long-term poisoning. The film subtly suggests that the mother has Munchausen’s by Proxy and was carrying out the prolonged poisoning not for the direct goal of killing the girl but rather for the attention having a sick child provided her.

Funeral guests can be heard musing about how long the girl had been sick, how many specialists were consulted to find the cause of the mystery illness and sadly explaining that now that the older child was dead that the younger sister was also begun to exhibit similar symptoms.

So while Cole Sear is not mad. Madness in the Sixth Sense is still dangerous.

In the film The Village (2004), Shyamalan manages to include both someone who is dangerously disabled and a supercrip.

alice-walker-the-village

Image description: Still from the film The Village. Alice Walker (played by Bryce Dallas Howard) stands in a doorway in a white nightdress. She stares blankly in front of her while reaching her right hand imploringly through the door (image source).

Ivy Walker (Bryce Dallas Howard) is blind. Her blindness isn’t particularly extraordinary until she is forced to take on the supercrip role after the intellectually disabled and sexually frustrated Noah Percy (Adrien Brody) stabs her beloved in a fit of jealousy.

Ivy’s blindness is a bizarre plot device because I never could fully understand why she was the only person who could leave the village in search of medical attention. It appears to mainly be a plot device to add tension to jump scares and an odd scene where she finds a miraculously well-tended gravel path in the middle of a forest. Allowing for a moment of “Oh look at how the blind girl recognizes the change in terrain without sight”.

Noah Percy is a standard movie caricature of intellectual disability. He his presented as a perpetual child. His violence is a direct result of sexual frustration which reinforces the idea that the sexuality of disabled men is dangerous.

There may be other examples of disability stereotypes in Shyamalan’s work but I admit that I have not seen all of his films. I can only hope that Split was an anomaly and that Shyamalan returns to his standard of flops because unfortunately as history has taught us failure does not stop him and he is unlikely to learn and stop using dangerous disability narratives. They are far too ingrained in his work.

 

 

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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I was inspired to write this piece by David Perry who wanted a proper write up of a Twitter rant I wrote earlier in the day.

When Social Justice Media “Allies” Get it Wrong

On Jan. 6th Seriously.tv–a social justice focused video producer–put out a new instalment of their series “Shutting Down the Bullshit…”. The series is characterised by host Dylan Marron confronting either a noted activist or a group of people who are linked by a shared experience (race, religion, sexual assault) with stereotypes that they encounter as a result of their work or lived experience. The videos give those being interviewed an opportunity to respond directly to those harmful stereotypes.

The Jan. 6th instalment was Shutting Down the Bullshit about Autism. It, unfortunately, ends up reinforcing more stereotypes than it debunks and displays some very problematic advocacy on behalf of a grout that Marron and presumable the rest of the Seriously.tv crew do not belong to.

The “interviewee” is Avery. I put “interviewee” in quotes intentionally because, for the most part, he isn’t really the person responding to the stereotypes that Marron brings. His answers often give little information that is often problematic.

Avery brings up Autism functioning labels which are a contentious and problematic way to categorise Autistic people. People who are labelled high functioning are generally seen as being more “normal” and thus more human. People who are labelled low functioning as a consequence are seen as less human (for more thoughts on functioing labels go here).

Avery seems not only unaware of this controversy but also buys into it. Marron prompts him to divulge his functioning level to which he proudly responds “very high”.

This reinforces a dehumanizing hierarchy that posits that the more “normal” you seem the better you are. It is a harmful hierarchical structure that extends beyond the Autistic population to disabled people generally and serves primarily the place varying disabled people onto a spectrum of social value (more on that here). Now that is some bullshit that needs to be shut down.

Ultimately, though, the interview isn’t really with Avery. The interview is really with his father which brings up a host of other problems.

Much activism has been done to try and centre Autism narratives from within the Autistic community. Much of this activism comes as a direct push back against the prevalence of parent narratives. This is an issue that extends beyond the Autistic community to the wider disabled community. Consider the pushback against the website the Mighty which centres a lot of parent narratives (see here, here, and here).

Avery is really little more than prop to give a visual for his father’s input. This isn’t even thinly veiled. Avery is clearly unable to answer some of the questions, so they are clearly designed for someone else. Marron asks Avery about the film Rain Man. A film Avery hasn’t even seen so he is unable to even understand the stereotype being referenced. Not that his father does much better when the video cuts to him, he says,

“Rain Man is a lovely movie about a man’s relationship with his brother. It is not a movie about Autism”

This answer is dismissive bullshit.

Rain Man epitomises a harmful and prevalent media stereotype about Autism. It is a caricature that utilises stereotypes about  Autism and savantism that are seen in many films that include Autistic characters. It features a character that is often parodied and involves the use of cripping up. The discriminatory practice of a nondisabled actor playing a disabled character. It is a film that has very much informed the cultural consciousness of what it means to be Autistic.

The lack of mentioning of the Autistic savant stereotype is even more telling when the video decides to highlight Avery’s “special skill” he has perfect pitch. His demonstration of this skill along with a lot of video of him talking is really just a backdrop for his father’s voice over.

The focus on Avery’s father is not just problematic because he’s taking up space that should really be filled by an Autistic voice. The video basically applauds him by including an old myth that Autism was caused by bad parenting. This moment seems more like a moment to say “oh look at this nice parent of a disabled child” than actually challenging a stereotype that needs debunking.

While the “Autism is caused by bad parenting” myth did exist it is hardly prevalent now. It is far more common for people to believe that Autism is caused by vaccines. Which is some bullshit that has already been heavily debunked but it still far to widely believed. It is a belief that actively stigmatises Autistic people and threatens people’s health and lives.

Patting Avery’s father on the back for not being a shitty parent is also problematic because it obscures just how much abuse parents of disabled children are forgiven for.

Consider the conciliatory tone the media took with Kelli Stapleton who tried to kill her Autistic daughter Isabelle.

A video that is ostensibly about challenging Autism stereotypes is no place for “yay, parents of disabled kids”. Regardless of how good of a parent Avery’s father. His experience and old stereotypes focusing on parents should not be the focus because it feeds into a dangerous “saintly parent” stereotype which is some other bullshit that needs shutting down.

This visual silencing of an Autistic person in favour of a neurotypical voice is actually hard to watch. It is also not in keeping with the other videos in the series which clearly centre activists speaking for themselves.

In other videos in the series where a single individual is interviewed, they are always an activist (with the exception of a less serious instalment where Marron speaks to a toddler). When multiple voices aren’t being heard, the individual is someone who it is easy enough to look up and fact check. It is possible to see where they fit into the experience they are speaking to and find out any criticisms of them and their opinions.

This is not possible with Avery or his father for whom we are not even given a last name.

Marron sought to defend his choice to use Avery’s dad in the video with a statement on facebook that he later shared on Twitter.

dylan-marron-excuses

Image description: A screenshot of a Facebook comment by Dylan Marron which reads “Hey all, I’d like to publicly address my decision to open up the conversation to include Avery’s dad Joey. Thank you to those who have asked about it (Thanks Jaden!). I work hard to make sure that ‘Shutting Down Bullsh*t’ gives a platform to those directly affected by the bullsh*t so they can shut it down themselves. This topic, however, provided a unique challenge as we were dispelling myths about a condition that inherently inhibits communication – not intelligence or capability, but communication. Avery is a friend of mine and I personally know how brilliant he is, but I also know that there were some social barriers that would prevent him from expressing the detail that he wants to convey. Joey, his dad, is also a friend of mine. We talked about this interview for a while and carefully discussed what would be best to make sure Avery was speaking for himself, but also how to make this video accessible to those who know nothing about autism. I figured that rather than relying on stats and graphics to complement Avery’s responses, I would also give that platform to someone who not only knows a great deal about autism, but someone who deeply loves a person with autism and could help illuminate more about this person to a neurotypical audience. The way I see it is that Joey wasn’t speaking for Avery, but rather was complementing him. Shutting Down Bullsh*t takes huge, gigantic, and complex topics and squeezes them in to a three minute video. None of my guests can speak for *all* people affected by the bullsh*t they are shutting down, but they can present a reflection of what *some* folks in that community *might* be feeling. Since I wasn’t able to interview all folks on the autism spectrum, this video is about autism through Avery’s eyes. And to honor that I thought the best thing to do would be to include the voice of someone who loves him deeply and has spent his entire fatherhood ensuring that Avery speaks for himself as much as possible.”

This defence is itself full of problematic Autism stereotypes that Marron is using to defend himself. Even though the video itself does (through Avery’s dad) mention the diversity of Autistic people, Marron says

“I work hard to make sure that ‘Shutting Down Bullsh*t’ gives a platform to those directly affected by the bullsh*t so they can shut it down themselves. This topic, however, provided a unique challenge as we were dispelling myths about a condition that inherently inhibits communication”

So much for diversity of the Autistic experience. Apparently, we are all incapable of speaking not only about our own experiences but responding to the stereotypes and stigma we experience. I must assume my entire post is gibberish then. You probably haven’t even read this far it must be such an incomprehensible mess.

Basically, the problem isn’t that Autistic people need to have neurotypical translators or spokespeople but that Marron chose the wrong interview subject.

Avery is clearly not knowledgeable about major stereotypes or issues within the Autistic community. How is he supposed to respond to things with which he is unfamiliar? It is an unfamiliarity that his father largely shares. He is not an appropriate replacement advocate.

The video format is also inaccessible to Avery. It is very adversarial and there was not attempt made to modify the format to make it easier for him. This is unsurprising as the video is so clearly geared towards speaking to his father and not him.

There are absolutely Autistic people who can and do regularly shut down bullshit ableist stereotypes. (like Lydia X.Z. Brown as just one example). There are entire organisations set up to promote Autism self-advocacy. (see here and here). It is more than possible to find Autistic people who don’t need an interpreter. It is possible to find Autistic people who can be researched so that like the other people featured in this video series, viewers can learn more and see how they fit into a larger activist framework.

Marron basically rejects that possibility. He also uses the “well not everyone is going to agree” cop out.

“None of my guests can speak for *all* people affected by the bullsh*t they are shutting down, but they can present a reflection of what *some* folks in that community *might* be feeling. Since I wasn’t able to interview all folks on the autism spectrum, this video is about autism through Avery’s eyes. And to honor that I thought the best thing to do would be to include the voice of someone who loves him deeply and has spent his entire fatherhood ensuring that Avery speaks for himself as much as possible.”

While of course, no one in this video series speaks for everyone in their movement at least it is usually possible to situate them within it. Marron wants it both ways, to argue that making a video about Autism stereotypes featuring an Autistic person is inherently difficult (because he generalises that Autistic people have difficulty communicating) and then defend his choice of subject as just a particular point of view. A point of view that by featuring in a video, he is supporting.

By framing it this way Marron puts the Autistic community into a box that we don’t fit into. By choosing to interview someone who has no clear public presence it is impossible to situate him in a wider discourse on Autism and advocacy and give a very singular view of Autism that doesn’t centre Autistic people and spews more bullshit than it shuts down.

I know I’m Autistic but hopefully, I communicated that effectively.

 

Update:

Seriously.tv and Dylan Marron have released a new Shutting Down the Bullshit about Autism video. This one uses only Autistic people and includes multiple voices.

Marron also directly responded to the criticism from the Autistic community in a tweet and on Facebook.

A screen-readable version of the text in the tweet images can be found at the bottom of this post.

It’s great to see a more accurate Autistic people shutting down the bullshit for themselves.

The text in Marron’s response reads

Being called out publicly when you think you’re already “woke” sucks. But it helps, too.

In a recent episode of ‘Shutting Down Bullsh*t’ I sat down with my friend Avery to dispel myths about autism. I also included an interview with his father to help illuminate more about autism from the parent’s perspective. I had no idea that allistic (non-autistic) parents speaking over their children is a harmful trope in the representation of autism. I should have taken the time to know that. That’s on me.

While many in the autism community reached out with thanks for beginning to tackle the issue on my show, a great number also expressed frustration with the video – even deep anger. My gut response was to say “No, this can’t be! I’m woke! I speak up against ableism!” But as the messages continued to come in, I realized that I had presented the autism community incompletely at best and, at worst, I had fallen into a pattern of silencing that folks on the spectrum are far too familiar with.

This was particularly tough for me to come to terms with as someone who has been so aware of the silencing that has gone on in my own communities; the centering of cis white masc-presenting men in LGBT representation, the favoring of light skin and Eurocentric features in Latinx culture… the list, sadly, goes on.

The messages pointing out the shortcomings in my video – especially from longtime fans – hurt to read. But ultimately it was for the better. And I’m thankful to those who took the time to explain to me why the episode missed the mark.

Through this all, I’m understanding that “wokeness” is in fact a process, and not a photo-friendly finish line. I still have much more to learn but I’m listening.

To all of us who identify as “woke”, may we not get too proud of our awareness. May we take a deep breath when we’re called out by the communities we’re seeking to serve, and offer a helping hand when we see others “miss the mark.” And finally: let’s accept that we will inevitably Get It Wrong sometimes. What matters is how we evolve after that.

Let’s keep making and let’s keep listening. We can’t afford not to.

The Real Problem with “Drive-By Lawsuits”

On Dec. 4 the show 60 Minutes featured a segment on “Drive-By Lawsuits” hosted by Anderson Cooper. A drive-by lawsuit is a lawsuit filed by a disabled person based on an ADA (or other accessibility law depending on country of origin) violation. These lawsuits are framed as a nuisance as they are sometimes filed by people or law firms who do this regularly.

There are a number of problems with the segment.

It utilizes stigmatizing footage of disabled people

The segment utilizes background footage of Ingrid Tischer who has this to say about seeing herself in this context,

You know what’s awesome? Seeing yourself — excuse me, parts of yourself, the non-mouthy parts — on The TeeVee showing how disability access in built environments are achievable and cool in a segment where the talking parts of other people — excuse me, men people — explain the horror of running a business that doesn’t break the law or limit their customer base. Courtesy 60 FoxNews Minutes

The footage does not include her head. She is completely depersonalized.

It doesn’t delve into why there are so many ADA violations

There is no active monitoring of ADA compliance. Dealing with infractions of laws governing accessibility (in the US & many other countries) is often primarily done through complaints. So while the law may say what needs to be done, unless someone actually complains there is little incentive to actively comply. There is no independent body doing regular inspections and meting out fines for noncompliance.

The segment doesn’t question why so many of the people hit with these so called nonsense lawsuits are ignorant of the law but it shows that ignorance as reasonable. No one questions why business owners are so unaware of their responsibilities.

It suggests that compliance is only necessary if people are complaining

One of the questions that every business owner is asked is whether anyone has either actually used an accommodation or asked for it prior to the lawsuit. The answer is invariably “no”.

This is framed to seem as though the accommodation has been up till now unnecessary and that the request was ultimately frivolous. Ingrid Tischer provides insight into why disabled people don’t make requests and don’t forcefully complain if an accommodation is unavailable.

You know why I never used to ask for a pool lift and maybe never even sought one out? (Despite excellent legal reasoning that ought to render the issue moot.) Because I’ve been hardened by the indifference of business owners. You know – the people who admit on national television they weren’t following the law and somehow are the sympathetic victims of rapacious crippled people.

This segment ultimately frames accessibility law as overreaching legislation that demands things that are unnecessary but fails to look at the reality of living in a world that is routinely inaccessible. There is very real truth to the idea that if you aren’t expected to show up then you will simply learn not to. Particularly if your presence and needs are treated as an inconvenience.

It frames people who file these suits as nuisances

One of the glaring omissions of the 60 minutes piece is that it doesn’t look at how these ADA infractions would be ameliorated if not for these lawsuits (in fact it none to subtly suggests that maybe there didn’t really need to be accommodation in the first place).

The ADA is law and yet it is widely overlooked by the people who are supposed to be subject to it. The segment points out repeatedly that proprietors don’t think that the people filing are actual customers but my question is; so what? These accommodations aren’t supposed to be things people have to ask for. They are simply supposed to be available. Why is it relevant who points it?

Cooper also talks about the lack of warning before a lawsuit but he doesn’t actually look at whether warnings are effective. In fact, they go out of their way to make accommodations seem inconvenient and excessive. They point out both the specificity of the requirements (though brief lip service is paid to the importance of this) and the costs. Then they go out of their way to say that the expensive accommodation goes unused.

It basically undermines the very purpose of the ADA.

It doesn’t look at how poor enforcement of the ADA has led to the abuse of disabled people

The segment also looks at how unscrupulous lawyers recruit disabled people to use as claimants and then cheat them out of the proceeds. This is a real concern. The segment however, points at the ability to sue over ADA violations as the major contributing factor in this kind of economic abuse. However, if the ADA was actively enforced it would do away with the very need for widespread filings and thus make this kind of abuse less likely to occur. Suing over ADA violations would be less lucrative.

It puts the blame for societal stigma against disabled people on disabled people who demand access

Perhaps the most egregious part of the segment is that it makes a point of voicing the idea that demands for access breed ill will toward disabled people. The problem is that this ill will already existed. The proprietors just had plausible deniability. They didn’t accommodate because they just didn’t know any better and they didn’t know any better because they didn’t take time  to think about the needs of disabled people and their legal obligations towards them. This lead to the creation and maintanence of inaccessible spaces.

Ill will doesn’t only exist when people acknowledge it. It was just subversive and deniable. Having it pointed out and there being a financial ramification is not disabled people’s fault. Saying it is, only serves to encourage disabled people to stay silent.

***

It would be far better if government took an active role in monitoring and enforcing accessibility legislation. It would likely create a more accessible environment. It would also remove the need for mass lawsuits. It would also remove the proprietor as victim narrative because the law would be enforced more uniformly. People would not be able to opine that they had been hit with an infraction when the guy down the street did not.

Complaint based systems are not useful in enforcing legislation that is designed to help a marginalized group. It creates an adversarial environment where the marginalized are somehow always to blame because they can’t see and force everyone to comply equally.

Creating a law meant to create more equality but not including a substantive way of enforcing it says a lot about how unimportant that equality really is.

The real problem with drive-by lawsuits is not that they happen but that we live in a world that makes them so easy and in some ways necessary to create accessible spaces.

I only wish Anderson Cooper and 60 Minutes had considered that before airing that segment.