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.

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Disability as Sensationalist Narrative

It’s been a long time since I’ve posted anything. I’ve just finished the first year of my PhD studies and was feeling burned out. Today however, David Perry wrote about a “news” story in which the reporter profiled the mother of a young autistic child.

It is just another drop in the ocean of horrible parent narratives about disability which frame disability as the scourge that ruined the poor parents lives. These narratives are always framed as universal even though the profile sample is restricted to very few and often only one example. The article (if it can really be called that) reads like bad film noire narration. author’s sole source of information is the child’s mother. This is why I find it surprising that the piece is found in the “news” section. There is no actual research involved. He didn’t seek to find out if the woman’s experience is common. He just assumes that it is. He doesn’t talk to doctors or service providers to see if more assistance is available. Most importantly he certainly doesn’t speak to any actually autistic people. The reader is supposed to take his third hand retelling of the reality of autism as universal truth. He describes autism as an “epidemic” and a “genetic devil”.

He also seems to reject the idea that different people with autism might actually display different behaviours. He scoffs at a generic and very medical definition of autism:

Autism is a disease with a broad spectrum of symptoms that can start in the womb and last into adulthood. In one common definition, it is “characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.”

he follows that up with “That’s putting it more nicely than it deserves.”. He completely rejects any concept of spectrum or individuality in the experience of autism, preferring instead to assume the single experiences of one mother is more widely applicable than an actual medical definition.

The thing is, this isn’t reporting, there was no research involved. Rather it is just another example of a centuries old habit of third person sensationalist narratives about disability that depend more on literary tropes than reality in order to frame real world perspectives of disability.

While I have no doubt that the mother profiled is expressing her genuine feelings. The writer fails to give them any context be it from medical professionals or disabled people. Both groups would likely frame the realities of autism differently but I have no doubt that they would agree on one thing. This one woman’s reality (or interpretation of her reality) is not and should not be taken as indicative of the broader realities of autism.

Even a more tempered description of his encounter with the mother might have been less offensive. He never met the son (whose full name is disclosed in the article thus violating the child’s privacy) but talks about him as though that isn’t necessary to really “know” him.

When I said the piece reads like bad film noire narration, I wasn’t exaggerating. the author used florid language, metaphors and similes. He is absolutely framing autism as a monster.

[the child] is not a criminal; rather, a crime has been committed against him by a genetic devil called autism. It’s an affliction that seems to be growing in society like mushrooms under an autumn moon. (emphasis mine)

He talks about autism as though it’s a Dr. Jekyll & Mr. Hyde scenario as though the child exists without it. As though it took him over and if only autism could be gotten rid of the “real child” would emerge. this is reinforced by the rhetoric of disease and epidemic that he uses.

There are two things wrong with this. First and most importantly that child without autism is a figment of his imagination. He doesn’t exist and never did. the author acknowledges that autism is genetic (so at least we’re not dealing with a vaccine reactionary. Which is something I guess) that means the child has always been autistic. There is no nonautistic child in there.

Which brings us to the second problem a lot of autistic people, myself included don’t actually want to be cured. My reasons for it are primarily selfish. I like myself. Autism impacts everything I do and how I interact with the world. If I didn’t have autism, I would be a fundamentally different person. This is a pretty common sentiment but others will also be slightly less self-absorbed than me and point out that autism is a natural part of human diversity (for more perspectives on this see here, here, and here).

The thing is the author doesn’t really care about nuance or wider realities because he’s to busy creating his own where not only is the child he’s talking about a monster but so are basically all autistic people.

He appears to make random innocuous observations about the woman he’s profiling and her home and they inevitably have a horrible autism anecdote to go along with them. Like when wonders why this nice lady has tattoos–because apparently there is an identifiable “type” of person who gets tattoos and it’s not mothers of four–she has them to cover up the scars from where her son has bitten her.

Even the lack of towels in the bathroom is suspect. The explanation for which was a level of parent oversharing that I won’t recount it (the website Ollibean has guidelines about writing about your disabled children that I with the author and mother had considered). The fact that the lack of towels was worth even mentioning much less questioning is odd. I can’t even remember how many times I’ve been a guest in a house where the bathroom was inconveniently lacking in towels. In houses where there is no autistic resident. I always chalk it up to the host’s forgetfulness or lack of consideration. It’s never been worth questioning.

All of this is shared with the pretense of education but not everything gets a detailed expectation. When discussing the breakdown of the woman’s marriage he says this:

She also has a long-term marriage that is coming to an end. Her husband, Rene Juarez, loves his wife and his children. But after 10 years of living with autism …

He. Just. Can’t. Stay.

I didn’t add the ellipses. He’s actually put them in there to invite the reader to draw their own conclusions. After very conveniently setting up autism as the monster under the bed.

No other contributing factors are considered.

The child is then summarily blamed not only the breakdown of his parents marriage but also his mother’s drinking and experiences of depression. The fact that his grandfather suggested he be exorcised is added in as well. To you know really drive home the fact that he’s a monster.

The mother’s statement that her son deserves understanding and compassion is treated more like the request of an altruistic saint than something that should be taken seriously.

Basically every sentence could be dissected so I’ll skip ahead to the end where in an odd non sequitur the author jumps from discussing the woman’s charity  to her single relationship status.

I tread lightly here. I’m just going to be straight with you, Sonia: You must know the chances of a new marriage are not great. Few men would step into this situation.

“Absolutely true. I know that. To be honest with you, I have accepted that my life revolves around my son and my girls. But I also have another mission to fulfill. I feel this in my heart. I will help other families that live with autistic children.”

It comes out of nowhere but seems tacked on the end to really drive home how much of a martyr she is.

The fact that this piece was published at all is troubling. The fat that a newspaper actually classified it as “news” is even more so.

It’s sensationalist trash with very little basis in reality even if we assume the mother is being honest about her opinions and experiences because of the spin the author gives it. It’s directly in line with the fictionalized biographies of historical disabled people were written to frame them as other and the people who exploited them as benevolent.

Consider Dr. Frederick Treve’s memoir about his relationship with Joseph Merrick (known as The Elephant Man) which frames the adult Merrick who Treves repeatedly misnames John as a child.

Or the promotional pamphlet for Krao Farini (known as the missing link) whose race and physical difference were used to rob her of her very humanity.

This really is just another additional to a long line of sensationalist writing about disability which serves to make those around the disabled person seem like saints while leaving the disabled person as either object of pity or horror.

It is most certainly not news. It doesn’t even have the veneer of objectivity and any concept of research was clearly not even considered.

That child deserved better. Disabled people as a whole deserved better.