If You Care about Autistic People Don’t Just Perform Solidarity

So April is upon us and along with it Autism Bewareness Month (I stand by that word choice). Tomorrow is World Autism Awareness Day and I am already feeling suffocated by all of the faux awareness.

Awareness would be great if it actually meant that people were actually educating themselves about the realities of autistic people. If it meant promoting the voices of actually autistic people. I would be ecstatic if that real awareness translated into acceptance and action. Action, that meant fighting for the rights of autistic people. Unfortunately, more often than not we get shallow shoutouts.

The danger of those shoutouts is not only in their inefficacy and often patronizing messaging, it is also in that they benefit problematic organizations.

Yesterday, I was scrolling through my Facebook feed when I noticed that a friend had added a border to their profile picture. The following image is my own photo with the border as illustration (don’t worry it never made it onto my profile).

autism speaks frame facebook

Image description: A woman with short blond hair, blue eyes and dark blue lipstick, looks directly at the camera. On the bottom is s white border with the Autism Speaks logo (a blue puzzle piece over the words Autism Speaks) and followed by the words “different not less”

First, let’s deal with the messaging. On its face, it’s a positive message but it also doesn’t really tell you anything about me or my experiences as an autistic person. It’s also so basic that it merely pays lip service to my humanity rather than actually affirming it. It exists in the same vein as the empty “special needs” memes that promote “acceptance” through pity.

10940999_769959393059095_6633527766282533542_n

Image description: Black text on a pink background the text reads “anyone willing to post this and leave it on their status for 1 hour? It is Special Education Week & Autism and ADHD Awareness month–This is in honor of all children who struggle everyday”

Images like this often position themselves as dares, the suggestion is do you dare? are you brave enough? The message that those who don’t are morally suspect. Then the images don’t share any actual information but reaffirm the preconceived notion that to be disabled is to suffer.

Not only is this not true awareness it is active misinformation that spreads pity.

Returning to the Autism Speaks Facebook border. While is isn’t as aggressive in its approach to getting people to use it, the end game is the same. You can feel good about the fact that you’ve done something. You’ve helped raise awareness. Admittedly an awareness that consists largely of an acknowledgement that autistic people exist and a general sentiment that it’s probably best to be nice to autistic people.

It doesn’t tell you why you need to be reminded of these facts. It doesn’t tell you about the real risks of violence and bullying that autistic people face. It doesn’t tear down stereotypes about autism. Which means that people are likely going to continue to comfortably believe the misinformation they may have internalized.

This kind of solidarity is predominantly a performance. It may come with good intentions but it ultimately does little or nothing to actually help autistic people. It does make people who add that border to their profile picture feel warm & fuzzy though.

One thing that the widespread adoption of performance solidarity like that border is that it gives a lot of publicity to the organization that created it and that’s a problem.

Autism Speaks is an organization that has a long history of speaking for autistic people with little or no input from actually autistic people. It has spread dangerous narratives about autistic people. It has supported anti-vaccination narratives.

While there have been changes in the organization and it no longer promotes a cure narrative and is no longer overtly anti-vaccination. It still widely benefits from it’s history peddling those dangerous narratives.

consider how the White House is going to “Light it Up Blue” (a practice created by Autism Speaks) tomorrow for the first time in years after the Obama administration halted the practice, in large part because of feedback from the autistic community. Donald Trump is friends with Bob Wright, one of the founders of Autism Speaks and the source of many of the dangerous narratives that the organization no longer officially supports. Trump is also sceptical of vaccines.

So regardless of their official position change. Autism Speaks is still largely associated with those narratives and they crop up in very visible ways. Autism Speaks is almost certainly going to financially benefit from this connection.

Despite their official change of heart, Autism Speaks is still widely disliked by actual autistic people who remember the years of demonization from the organization. It is also far too early to tell whether the official changes in policy will translate into real change in the actions the organization takes.

So, I would ask you not to change your profile picture to include that border this April. I would ask that you not support Autism Speaks.

If you really want to support autistic people this April and hopefully beyond it, you can support organizations that are run by autistic people like the Autistic Self Advocacy Network and the Autism Women’s Network. You can read the work of actually autistic people. You can promote and amplify their voices and work. You can financially support them (shameless plug for my tip jar).

These are things that can actually create a more nuanced understanding of autism and a positive kind of awareness. An awareness that leads to acceptance and action on the right of autistic people.

 

 

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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.

 

 

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.