Return of the Ableist Narrative: Why do We Keep Having to Demand Food Accessibility

A little over a year ago a tweet went viral.

Image Description: tweet with a picture of peeled oranges in plastic containers on a grocery store (whole foods) shelf. Tweet reads “If only nature could find a way to cover these oranges so we didn’t need to waste so much plastic on them”

This tweet had everything it needed to go viral. It featured a picture of a product that was perceived to have no real use and to be extremely wasteful. It was paired with catchy sarcastic commentary. It’s no wonder that not only did the tweet go viral. It sparked many articles condemning the environmental impact of plastic and what was perceived as a particularly egregious example of unnecessary wastefulness.

It was presented as a final step to far in consumerism and laziness.

The thing is as many disabled people pointed out at the time, prepared foods increase accessibility. Peeled oranges and other prepped foods give disabled people access to fresh food that they might otherwise simply not be able to have.

I wrote a blog post from that perspective at the time. It is to date the most viewed thing I have ever written.

The result of these conflicting viewpoints was a particularly horrifying debate that pitted environmental activists against disability rights activists. Particular highlights included: the suggestion that disabled people simply did not deserve access to easily accessible fresh food.

The suggestion that disabled people simply did not deserve access to easily accessible fresh food.

“Well you didn’t have it before now so you can keep living without it”

This, of course, ignores the reality of systemic oppression and actively promotes the idea that disabled people should not fight for or expect improvements to access and inclusion.

It also ignores how disabled people are held up as bogeymen in discourses around health particularly around discussions of dieting and exercise. People are told to eat well and exercise to avoid the spectre of disability but disabled people are routinely denied access to healthy food and exercise and then shamed for our perceived unhealthiness.

Paternalistic suggestions that instead of having prepared produce readily stocked that disabled people should simply ask staff the prep food for them.

Several well-intentioned grocery store employees expressed that they would always be happy to assist disabled patrons with preparing food and then extended this intention universally to all of their co-workers.

This ignores the fact that employees are often busy and may not be available. It also ignores the gatekeeping that disabled people routinely face when asking for accommodation. It neglects to consider that disabled people who ask for help are often met with scepticism, particularly if they are not disabled in a way that the nondisabled person understands. These scenarios often lead to inappropriate probing questions that require disabled people to prove that they are “disabled enough” to require the accommodation that they are requesting. It is not uncommon for these untrained gatekeepers to arbitrarily deny needed assistance because a disabled person doesn’t fit their stereotyped expectations.

A steady stream of people who simply did not believe disabled people when they described their difficulties in preparing produce (particularly peeling oranges), so they made suggestions that they thought we hadn’t previously considered.

This one tended to get individualized and the question “have you tried [insert completely inaccessible alternative way to peel an orange]”

This was such a popular  response to disabled people that in response to my original blog post one made this YouTube video

Not only is this a completely inaccurate interpretation of my body and how it works (or doesn’t as the case may be) making the video just horribly offensive, it also ignores the fact that I’m just one disabled person. I have just one kind of disabled body.

Even if he had managed to find a workaround for me. I was far from the only person saying that they wanted access to prepared produce. Their needs and limitations differ from my own.

This tactic is a way to attempt to silence individuals without acknowledging or dealing with the reality that those individuals are part of a larger community whose needs cannot be met with a one size fits all solution.

The original backlash around the tweet and the discussion that it created lasted a few weeks but unfortunately that discussion did not translate into widespread consideration around food accessibility. This is all too clear because we keep having to have this conversation over and over again.

Back in January Gizmodo published an article decrying the evils of selling peeled and halved avocados. It contained all the shaming language around wastefulness. A criticism that fell flat after a brief look at the author’s twitter feed which included a since deleted tweet celebrating the existence of a disposable plastic fork that came with a removable toothpick. His Gizmodo article was less an expression of real concern for the environment and more a shaming of a product that he had no use for. He has no problem with packaged food if it is something he doesn’t consider to be too lazy as this tweet about Werther’s Caramel Popcorn attests.

More recent food shaming of prepped foods has come with less of an environmental argument and seem to be more expressions of “I a nondisabled person cannot personally see a use for this”. The problem is that even this is effective. It utilizes coded language of laziness that is far too often really just a dog-whistle reference to people who are poor or disabled.

One heartening aspect of the resurgence of these food shaming narratives is that more often than not I become aware of them because someone else is using my old post about oranges to actively rebut it. This speaks to how far narratives challenging ableist narratives can go but also highlights how easy those narratives are to find and how little effort some people put in to considering perspectives that differ from their own. Part of this is just a desire for easy shock value clickbait virality. The author of the Gizmodo article never responded to disabled activists attempts to draw his attention to the accessibility perspective.

It is this desire for virality that influenced the most recent incarnation of this narrative. This is particularly clear because it is just someone who has directly plagiarized the original tweet about peeled oranges.

It is exactly the same as the original tweet. The same image and text except that it is shared by a different user.

The fact that this uncritical rebirth of this old narrative is frustrating enough but it is made more frustrating by the fact that it is just someone trying to capitalize on the old popularity of the original tweet. This person did not see those oranges in store. They can’t have. The original backlash resulted in Whole Foods removing the product from shelves. It’s not a genuine or original reaction.

It’s capitalizing on anger over a product that is no longer available so it doesn’t even make a statement about the continued wastefulness of plastic. It’s just an ableist narrative that won’t die and relies on the continued ignoring of disabled people and our needs and serves as a reminder of what options can be taken away from us when people uncritically decide that things that aren’t useful to them shouldn’t be available to anyone.

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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.

No, I don’t Worry about Alienating Allies

I have noticed in my online activism that if I call out problematic behaviour or comment on the cultural context of disability being mentioned in particular contexts either by an ally or by someone who is perceived as an ally, I will often be chastened for the nebulous offence of “alienating allies”.

When this happens, allies seem to stop being people who are devoted to the idea of meaningfully improving the lives of disabled people but are in fact thin skinned individuals who will reject the rights of disabled people if they are not rewarded with copious amounts of praise regardless of the impact of their actions.

As Ginny Di puts it,

The thing is, the pushback that I experience has never been from the people I am directly commenting on but either other disabled people who are concerned that the criticism will lead to the loss of allies or simply from people who don’t like seeing someone they admire being criticized for any reason.

People ask me why I criticize people publicly instead of trying to address my concerns with them privately. The answer to that is that I am invariably responding to something that someone has done publicly. If they have done something potentially harmful publicly, it needs to be challenged publicly because in this case, the response is not necessarily about directly educating the individual but about mitigating the potential harm of their actions. In some (if not most) cases, it is unlikely that I have any real potential of reaching that person directly. An example of this is my twitter response to Meryl Streep’s Golden Globes speech.

People seemed very concerned that Meryl Streep would change her already purely sentimental stance that people shouldn’t bully disabled people to an active undermining of disability rights simply because I dared to point out that her speech didn’t actually achieve anything for disabled people and in fact effectively used the stereotype of the disabled victim to galvanize emotional support for a broader anti-Donald Trump message.

I was hardly the only disabled person who was concerned about the fact that a vague mention of “being nice to disabled people” was being treated like cutting edge disability rights activism. As Jay Ruckelshaus–who wrote not about Streep but political discussions of disability generally–pointed out in the New York Times,

That a statement on disability garnered sympathy from across the political spectrum was unsurprising, at least to me. I’ve grown used to my wheelchair trumping (forgive me) other political and moral concerns. Rarely, if ever, do people contest my claims that we must do more for those with disabilities: Greater access? Better employment training? More flexible school curriculums?…

Initially, this harmony would seem helpful. Free from partisan discord, advancements for the approximately 57 million Americans with disabilities should be easier to achieve, borne aloft by the wings of certain progress. Why, then, do rampant unemployment and educational disparities endure, and why does success remain the exception?

I think part of the reason is the insulation of our pro-disabled political consensus. Its logic is rooted not in any deep belief in the equal worth of citizens with disabilities, but rather in a general aversion to disability. This is related to the charity impulse that has always surrounded disability — and has constrained liberation efforts by assuming that inequities are unfortunate but natural realities to be mitigated through compassion, rather than politically structured injustices. There is also a profound lack of disabled people in the public sphere, meaning any substantive discussion that does occur is extremely rare.

Many have convinced themselves that positive sentiment is an effective stand-in for meaningful action. Unfortunately, that action has rarely if ever followed on the heels of a call for sentiment, that did not demand action for disabled people.

The irony is, I don’t even know if Meryl Streep is aware that disabled people criticized her speech. She hasn’t addressed it, and yet people were so very concerned that she would rescind her already rather ineffective support as a result of it.

I can just imagine the conversation that almost definitely didn’t actually happen (#alternativefacts)

Meryl Streep’s personal assistant: Excuse me, Meryl but it appears that a disabled person has criticized your speech on Twitter.

Meryl Streep: Well, fuck disabled people then.

I have no way of knowing if Meryl Streep is aware of the criticisms that disabled people made of her speech and if she is how she feels about it but I do know that my criticism had an impact on others. My tweets were widely shared with many people thanking me for the new perspective or simply saying that I’d given them something new to think about. Those people far outnumber Meryl Streep. They are allies gained. Allies who listened. Allies who will hopefully when it comes to taking action, will actually act for disabled people rather than falling back on the comfortable inaction of sentiment.

Now Sometimes, the person who is being criticized does become aware of the criticism but even this doesn’t worry me too much as long as the person being criticized is really an ally. Last month, I wrote a critique of a video on autism. The creator, Dylan Marron had good intentions but missed the mark. He not only listened to the criticism from myself and others, he redid the video and apologized.

Text of his full apology can be found here.

Allyship should not be judged by the initial intentions (or perceived intentions) but in whether the person is as concerned with the impact of the outcome. Simply expressing sentimental support for disabled people should not be sufficient to be considered an ally.

Placing to much concern on alienating allies is to tell marginalized people that they should be satisfied with whatever they can get regardless of whether it is ineffective or even harmful because intentions trump impact.

It’s essentially treating marginalized peoples who are fighting for their human rights like spoiled children who didn’t get what they wanted for their birthday.

If offering a critique of someone’s actions was sufficient to make them abandon disability rights, then chances are they weren’t really an ally in the first place. And if offering that critique gets other people to think more critically about their intersectional human rights activism then that’s a bigger gain. If it gets the person being critiqued to rethink and change tactics to be more effective then all the better.

So no, I’m not all that worried about alienating allies because critique actually helps recruit allies and helps make it clear who the real allies are and who is just using us for a sentimental talking point.

 

 

I have Concerns about The March for Science

The presidency of Donald Trump has created a lot of social unrest. It has also resulted in significant protests. Most notably to date, The Women’s March on Washington which saw millions of people worldwide come out against Trump and his policies. The march was widely lauded but did garner significant criticism for issues of inclusion & intersectionality.

That is why it was so disappointing to discover that other movements, hoping to protest Trump or his policies were not paying attention. Trump

Trump, unsurprisingly took aim at science. He tried to stop scientific agencies from discussing scientific facts (that Trump disagrees with) on their social media. Which caused some accounts to go rogue and others to create alternate accounts that were separate from their official social media from which they share factual information.

Under this political climate, it is unsurprising that the scientific community decided to fight back. It is also unsurprising that after the success of the Women’s March that a March for Science is being proposed. Unfortunately, the organizers have not learned from the mistakes of the Women’s March.

The March for Science’s webpage does include a diversity statement. It reads,

Diversity
We will both have a diversity committee and a diverse steering committee that represents people of
many backgrounds and identities.Science is done by POC, women, immigrants, LGBTQ, indigenous people,
people of all beliefs and non-belief. We hope that this diversity is reflected in both the
leadership of the march and the march itself.

This statement leaves out disability. An oversight that disabled activists have been bringing to organizers’ attention since the page was published on Jan. 21. It took them five days to respond with this tweet.

Two days after that and they still haven’t even updated the text on their website as a placeholder while they work on a comprehensive statement on inclusion.

This is concerning because the March for Science has no transparency and this lack of transparency has me worried that the leaving out of disability may be just the beginning of inclusion issues.

It is, after all, easy to throw together a generic diversity statement. It is another thing entirely to follow through. Nowhere on the webpage, Twitter or Facebook is there a list of existing organizers or a system in place to ensure inclusion and diversity. When asked about any of this they point to a painfully insufficient Google Doc. There is no way to leave feedback.

People who ask questions are given the brush off with vague statements that answers are forthcoming.

Their twitter account has over 250,000 followers which speaks to widespread interest but there is very little evidence of follow through. They appear to be primarily running on popularity rather than concrete planning.

Basic things like a date and a visible organizing structure should have been in place before any social media went live.

Another major concern is the basic lack of a clear objective or message. The goal seems to simply be to “defend science” which is commendable, particularly when the President of the United States appears to be so averse to facts.

Officially their goal is,

The March for Science is a diverse, nonpartisan group that defends and celebrates

publicly funded and publicly accessible science

as a foundation of American freedom and prosperity.

Science  guides nearly every aspect of our lives and it is critical that political leaders and policymakers

support scientific research and incorporate science into their decision making.

Issues come up when the march is also billed as non-partison and other statements are made claiming that science apolitical. I don’t understand the first statement considering that this march is driven by a reaction to a very real political climate that is a response to government actions and statements.

The statements about science being apolitical, are just inaccurate and come from a very rose-tinted view of science as objective and free from bias. This is not true and the denial of a long history of scientific bias stands in direct opposition to the idea of inclusion seeing as disabled people,  women, immigrants, people of colour and the LGBTQI community have been on the violent receiving end of scientific bias for centuries.

For example Darwin’s interpretation of racial superiority in “The Descent of Man” or the Canadian, American (and yes Nazi) eugenic programs. Science has predominantly existed to serve and benefit nondisabled cis straight white men. That reality is not just ancient history it is a contemporary fact.

Science is not free from bias and is not some bastion of objectivity. Science is a product of the people who create it and we currently live in a world where the fear shouldn’t just be the silencing of scientists but accountability for the people performing it.

Failure to recognize the fallibility of science is exactly how harmful science happens.

Sharing memes and platitudes about the supposed inclusiveness of the sciences obscures the reality and I’ve seen far too much of that when there has been too little concrete movement towards actual inclusion.

I have questions for the organizers of the March for Science that I would genuinely like answers for.

Who are you?

When is the march going to be?

How can you be planning T-shirt sales when there is no date set yet and so little transparency around organizing?

How diverse is the current set of organizers?

What is being done to ensure meaningful consideration of diversity at the march?

Why is the march slated as apolitical? Particularly because this march is clearly a response to a particular political climate?

Why do you think science is apolitical?

How can you defend the idea of science as apolitical when historically it has been used to predominantly benefit white cis men and has been used to dehumanize anyone who wasn’t a white cis man?

 

I also have some suggestions.

Get your organizational ducks in a row.

Set up a system of accountability so that your supporters know who you are.

Set a date so that planning for satellite marches can start to take place.

Create an actual document stating your goals and concerns. Something that is more realistic than “science is apolitical, for everyone and must be protected”

Talk about the actual dangers to scientific research we face and be clear who is threatening that research.

Set up a diversity team with diverse activists from within STEM fields

Stop celebrating how many twitter followers you have and actually start delivering on answers and planning.

Be more transparent about the planning process so that we aren’t stuck with vague “we’re working on it” answers.

Tell us what you are working on and give a timeline on when we can expect things to be done.

Learn from the mistakes of the Women’s March and help move us forward not backwards.

 

 

Update:

The March for Science has updated it’s diversity statement

science-march-diversity-updated

The text now reads

In the past days, scientists have voiced concern over many issues – gag orders for government science agencies, funding freezes, and reversing science based policies. We recognize that these changes will differently and disproportionately affect minority scientists, science advocates, and the global communities impacted by these changes in American policies. Addressing these issues is imperative in understanding how recent developments will affect all people – not simply the most privileged among us. We take seriously your concerns that for this march to be meaningful, we must centralize diversity of the march’s organizers at all levels of planning. Diversity must also be reflected in the march itself —both through the mission statement and those who participate. We hear you, and thank you for your criticism. At the March for Science, we are committed to centralizing, highlighting, standing in solidarity with, and acting as accomplices with black, Latinx, Asian and Pacific Islander, indigenous, non-Christian, women, people with disabilities, poor, gay, lesbian, bisexual, queer, trans, non-binary, agender, and intersex scientists and science advocates. We must work to make science available to everyone and encouraging individuals of all backgrounds to pursue science careers, especially in advanced degrees and positions. A diverse group of scientists produces increasingly diverse research, which broadens, strengthens, and enriches scientific inquiry, and therefore, our understanding of the world.

There is still no movement on a comprehensive mission statement and the website still has references to science being apolitical, which directly contradicts the new diversity statement. I took it upon myself to fix it for them

science-is-political

Image description: An altered screenshot from The March for Science Webpage from their FAQ section. The Question is “Isn’t science apolitical?” The original answer of “Yes. The march is non-partisan, but it is absolutely intended to have an impact on policy makers.” is crossed out with the following text added at the bottom,

No, of course it isn’t. If it was there would be no need for this march in the first place. Science has often been politicized or practiced for biased reasons. That being said this is not a partisan even. This is to champion the use of solid peer reviewed research by government. If you support that, this event is for you.

Here’s hoping that The March for Science works on the other issues I discussed in this post, or I’m genuinely concerned that the March for Science will never actually happen.

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.