Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives

Labels

Image Description: a hand places disability label cards onto illustrations of children. Still taken from video in post.

Yesterday, on Twitter someone shared this video and asked me for my thoughts.

Video description: A mostly unnarrated video in which a pair of hands puts labels on illustrated jars like jam, peaches, pickles etc. Then the hands start labelling drawings of children with intellectual disability, gifted, autism, learning disability, ADHD, Tourettes, cerebral palsy and Down Syndrome. The video ends telling the viewer that labels are for jars.

I think talking about my feelings on this needs a wider audience than the one on one exchange I had on Twitter.

I actually completely disagree with the entire video. I think it is important to give children the words to understand and describe their own experiences and that it is also important to teach nondisabled children about disability in a normalized way. I have written before about the impact of not being given the tools to talk about my experience as a disabled person.

Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity.

It depends on the idea that disability is defined entirely in medical terms. That as soon as you’ve given a diagnosis and maybe described a few of the characteristics of that diagnosis that you’ve put that person into a box.

It completely ignores the reality of the disabled experience. Experience, that may be impacted by a specific diagnosis. An experience that very likely expands well beyond it.

Not giving children the words to understand their lives is not only a disservice, it’s straight up Orwellian.

Ignoring a child’s disability in the false hope that it will reinforce some kind of normalization is just an adoption of doublespeak. If we ignore reality, then maybe people will just stop bullying and discriminating against disabled people.

In reality, it only serves to further ostracize disabled children because it teaches them they are different and talking about that difference is wrong. It’s trying to solve the problem of discrimination by having the disabled child internalize their oppression and keep silent.

It infuriates me when parents or medical professionals recommend that children not be told about their disabilities in some misguided belief that this will gift the child with a normal childhood. It won’t.

Children aren’t waiting for a label before they decide to bully a peer. While language can be used to marginalize it is not the source of the stigma. Erasing language will not erase the oppression.

I grew up without a diagnosis for my autism. The lack of the label did not stop my classmates from bullying me so brutally that I changed schools, only to find new bullies at the next school.

When I finally got my diagnosis it was liberating. Finally, I understood my experiences. I had a frame of reference to understand why I behaved the way I did and why people reacted to me the way they did.

Having that diagnosis earlier wouldn’t have saved me from the bullies but it would have saved me from the added pain of not understanding why.

Not learning to talk about my disabilities also left me at a disadvantage when I was put in situations where acknowledging them was important. Because no one talked about my being disabled, no one considered how to accommodate me. I didn’t even realize that I had the right to be accommodated.

The erasure of language doesn’t just impact disabled kids. It impacts their nondisabled peers. It teaches them that disability is a dirty word and justifies prejudices against people who have been labelled. And kids will be labelled regardless of the omission of diagnosis. It just means that the labels will be insults and slurs.

Kids are best served by being taught accurate, respectful language. Disability should be normalized not by trying to create a false framework where the disabled children are just like their nondisabled peers. This utterly ignores the very real differences in experience.

Normalize disability by acknowledging it and by respecting the realities of disabled kids. Model inclusivity and accommodation. These things cannot be done if you haven’t even taught the children how to express their realities and ask for the things they need.

Teach kids how to talk about disability

Empower disabled kids to understand and talk about their lived experiences.

Teach nondisabled kids that disability isn’t something to be ignored or overlooked.

Language and identity are complicated and children, as they mature and grow may decide for a variety of reasons that they don’t like or identify with a certain label. These language preferences should be respected but I would like to see a world where a label isn’t rejected because a child has internalized stigma and prejudice and believes being associated with it makes them less.

Give kids words. Language empowers. Denying kids words is erasure.

Remember that sometimes words aren’t just labels. Sometimes they are identities.

 

 

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

AutFest

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

 

Dear Autism Society and Organizers of Aut Fest

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

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

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

So, what then are you honouring Affleck for?

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

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

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

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

Sincerely,

Kim Sauder

PS: Further reading on this

How ‘The Accountant’ Victimizes The Autistic Community

Autism Society Celebrates … Ben Affleck?

From Amy Sequenzia

 

 

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When Social Justice Media “Allies” Get it Wrong

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

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

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

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

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

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

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

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

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

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

This answer is dismissive bullshit.

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

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

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

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

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

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

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

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

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

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

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

dylan-marron-excuses

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Update:

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

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

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

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

The text in Marron’s response reads

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

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

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

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

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

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

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

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

“The Accountant” Tries To Be a Unique & Authentic Portrayal of Autism Using By the Numbers Stereotypes and No Actual Autistic People

The Accountant (which stars Ben Affleck & Anna Kendrick) is a film about an Autistic forensic accountant who is also a highly skilled hit man. The people behind the film (which opens on October 14) were featured in a recent LA Times article regarding what they did to make sure that the portrayal of an “Assassin-On-The-Spectrum” honestly.

The writer, director & stars all commented on how they tried to both turn the film narrative of autism on its head and maintain authenticity.

The problem is that based on everything that is revealed about the character in the piece actually sounds pretty much exactly like the same old tired Autism stereotypes that have been done before.

To add insult to injury the stated methods of attempting to ascertain that the film was accurate and inoffensive are deeply problematic and certainly don’t reassure me that due diligence was done.

This film hasn’t been released yet so I can’t actually speak to the full completed product but there is a lot in how those involved in the film are presenting both the autistic character, how they approached portraying him, and who they asked for feedback that is worth unpacking.

Let’s start by looking at the character Christian Wolff (Ben Affleck). They present the character as an edgy, unique autistic character who is different from other autistic characters that people have seen on screen before. This is why he is

A white male, unlike Raymond Babbitt, that kid from Mercury Rising, or Hugh Dancy’s character in Adam… Oh wait.

The vast majority of portrayals of disability not exclusive of autism are of white men. This is problematic in that it erases a visual representation of the huge diversity within the disabled population.

An autistic savant, unlike Raymond Babbitt, that kid from Mercury Rising, or Hugh Dancy’s character in Adam… Oh wait.

I’m pretty sure that I’m not the only autistic person who wishes that Hollywood would put a moratorium on autistic savant characters. Savantism is rare and does not accurately represent the average lived experience with autism. In film and television the opposite is apparently true. Autistic people who are not savants are basically an endangered species.

Does not achieve a lasting romantic relationship, unlike Raymond Babbitt,  or Hugh Dancy’s character in Adam… Oh wait.

Perhaps one the the most infuriating things said about Wolff’s character in the piece is when Ben Affleck says

“He doesn’t get the girl. … I thought it was so unique and surprising. It almost seemed too good to be true.”

No Ben. This is not unique. This is an insidious overly done stereotype in films in which disabled characters are routinely denied meaningful human relationships.

It’s only unique to actors like Affleck who are used to playing nondisabled leading men who get the girl as a matter of course.

As a disabled viewer of media the thing that would be to good to be true would be a film where the disabled character (who is preferably not a white  dude) actually gets the romantic ending. Not a film where either there is no suggestion of sexuality (Rain Man) or where the romance is destroyed as a direct result of the characters disability (Adam & potentially The Accountant. That remains to be seen).

Basically, the star of the film is excited about an aspect of the film that plays directly to  a harmful stereotype. It’s also so obvious a plot point that apparently it isn’t even a spoiler that should be kept under wraps at least until after the film is released.

*sigh*

The thing that is really supposed to make Christian Wolff different is the fact that he’s an assassin. I mean disabled characters being scary & dangerous is actually a pretty standard film trope (seriously pick a Bond film at random & see what I mean). So beyond the fact  that Wolff is the main character, I’m not sure how this is new or innovative. Dangerously disabled has in fact been done to death.

Then there is the issue of authenticity. The screenwriter Bill Dubuque says

“I’ve always been interested in how the mind works,” Dubuque said on a recent afternoon. “I thought: What if you could structure a story that was a mystery within a mystery? What goes on in this individual’s mind? How does he process information? How does he communicate with the rest of the world?”

How did they test if Dubuque got it right?

They screened it for Autism charities including Autism Speaks

The fact that they screened it for organizations rather than making a point to get the film in front of actual autistic people is already problematic but the fact that they highlight that they screened the film for Autism Speaks and present Autism Speaks as a reliable source of information is doubly problematic.

Autism Speaks has a particularly controversial relationship with actual autistic people. Ignoring that controversy and presenting Autism Speaks as an accurate gauge of the authenticity of autistic portrayal is basically giving Autistic people the finger.

Seriously, it is not hard to find autistic people criticizing Autism Speaks including Autistic People led advocacy organizations. Even mainstream media outlets have covered it.

Anna Kendrick asked the parent of an Autistic child

Anna Kendrick…admits she initially had concerns about whether the film would be able to represent autism in an accurate and nuanced way.

“A friend of mine has an autistic child, and I was so worried about telling her I was going to do a movie with this subject matter and potentially getting it wrong,” she said. “She was like, ‘I’m going to tell you something that somebody told me when my son was diagnosed: When you’ve met one autistic child, you’ve met one autistic child. To have an expectation that he should act this way or you should act that way — don’t even worry about that. Everyone is different.’”

The phrase “When you’ve met one autistic child, you’ve met one autistic child” exists to fight stereotyping of Autism. The fact that it is being used to basically say “do whatever you want, it’ll be fine” is really problematic.

The fact that Kendrick asked a parent rather than an actual autistic person is also problematic. Parents aren’t mind melded with their children and shouldn’t be assumed to be accurate surrogates for the opinions of the disabled community simply because they live in close proximity to disabled people.

Again, it really isn’t difficult to find disabled people criticizing the trend of prioritizing the views of nondisabled parents over the voices of actual disabled people. Heck, it’s not uncommon for disabled people to actively push back against parent rhetoric.

So what they apparently didn’t do,

Ask Autistic People

The Accountant is supposed to be a film about an Autistic character who not only holds down a job which requires him to interact with people but who also plans and carries out assassinations. So it posits that Autistic people can in fact exist in society. It is therefor frustrating that it didn’t seem to occur to the people involved in making of that film to actually talk to Autistic people. Instead preferring third person accounts of Autism from people who are not Autistic.

The only way this makes sense is if Christian Wolff does not turn out to be a character who actually exists in proximity to other people and the events of the film (his job, being an assassin) are in fact all in his head. And I really hope that the movie doesn’t go in that direction.

The failure to actively prioritize the narratives of Autistic people is unfortunate and does not convince me that authentic and honest portrayal were an important aspect of the film.

When people claim that authenticity of disability portrayal can come from organizations and parents rather than the actual people being portrayed I am not convinced that authenticity was the goal. I am convinced that the producers of that film are only interested in creating a veneer of authenticity to fool the primarily nondisabled audience. A veneer maintained so that the film industry can continue to create inaccurate fictions of disability that do not in any way reflect the actual disabled experience.

The LA times piece only makes me wonder if I’ll be able to do the Autism stereotype drinking game with The Accountant.

Take a shot every time they mention

Theory of mind

Autistic’s lack Empathy (is this why he’s such a good assassin? if so Fuck You)

Does some unnaturally talented math thing.

I await a time when authenticity actually requires the active and widespread involvement of the people being portrayed. Preferably both behind and in front of the camera.

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.

 

 

 

What Canada’s Immigration Policies Say about the Status of Disability in Canada

Every so often in Canada (and other countries but I’m focusing on Canada here) a sad story will appear in the papers. It’s one that we’ve seen before and will unfortunately see again. A family has been denied permanent residency because a family member (usually a minor child) is disabled. The most recent iteration of this recurring story involves the family of York University professor Felipe Montoya. The Montoyas were denied permanent residency because their son, Nico has Down Syndrome.

Nico is being refused under Canada’s Immigration and Refugee Protection Act under health grounds. The relevant section of the act maintains that someone can be denied permanent residency in Canada if,

 

  •  (1) A foreign national is inadmissible on health grounds if their health condition

    • (a) is likely to be a danger to public health;

    • (b) is likely to be a danger to public safety; or

    • (c) might reasonably be expected to cause excessive demand on health or social services.

 

Nico is being refused under the third subsection about the potential drain on health or social services.

This portion of the Act is a catchall which is used to summarily refuse residency to disabled people. It places a burden of proof that affects no other applicants as regards health. At least the first two subsections are dealing with immediately identifiable issues like whether a person is currently ill. The third however requires disabled people to prove that they will never be seriously ill or that their conditions will not deteriorate. While the wording suggests that the risk of expense must be reasonable to apply, in practice it becomes swiftly apparent that the presence of disability regardless of whether or not the individual is currently in need of expensive treatment or services or if those services might require alternate funding anyway.

There is no onus on a nondisabled applicant to prove that they will never contract cancer, experience a disabling accident or simply experience prolonged unemployment necessitating the use of social supports. This is however completely impossible to guarantee. It is also entirely impossible to prove that a disabled applicant will be a burden on the Canadian public.

The thing is, that this section of Canadian immigration legislation is of questionable constitutionality. It also most definitely does contravene the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

Section 15 of the Charter of Rights and Freedoms states that,

Equality Rights

Marginal note:Equality before and under law and equal protection and benefit of law
  •  (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

  • Marginal note:Affirmative action programs

    (2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

You will notice that 15(2) directly states that laws or actions that encourage the equal treatment of the protected groups listed in 15(1) are allowed. This means that the financial hardship argument found in immigration legislation in regards to disabled applicants is flimsy at best. Legal jurisprudence on the issue of constitutional exceptions for financial reasons bares this out, with the courts having

stated its intention to continue to view budgetary justifications for Charter breaches with scepticism, “because there are always budgetary constraints and there are always other pressing government priorities.”

And yes, the Charter of Rights and Freedoms applies to all laws, even those dealing with nonCanadians such as immigration law.

The problem here is not that Canada’s immigration law is constitutional but that the government will maintain a convenient discriminatory and unconstitutional law until someone raises a Supreme Court Charter Challenge. They are gambling that people unfairly affected by unjust laws will not have the money or years to invest in a Supreme Court challenge (and yes Charter challenges take years, even the successful ones).

When the Charter was first proposed people were hopeful particularly as regards section 15 that marginalized people would not have to fight for legal protections anymore. It was hoped that the Charter would force the government to be proactive in aligning Canadian legislation with the Charter. Unfortunately this has not been the case and people have repeatedly had to fight for the supposed rights that the Charter claims to guarantee.

The government bets that people won’t have the time, money or energy to fight and doesn’t back down when they do. They do this despite the Charter and despite the UNCRPD which Canada has ratified. Article 18 of the UNCRPD directly states that

1. States Parties shall recognize the rights of persons with disabilities to liberty of movement, to freedom to choose their residence and to a nationality, on an equal basis with others, including by ensuring that persons with disabilities:

  1. Have the right to acquire and change a nationality and are not deprived of their nationality arbitrarily or on the basis of disability;
  2. Are not deprived, on the basis of disability, of their ability to obtain, possess and utilize documentation of their nationality or other documentation of identification, or to utilize relevant processes such as immigration proceedings, that may be needed to facilitate exercise of the right to liberty of movement;
  3. Are free to leave any country, including their own;
  4. Are not deprived, arbitrarily or on the basis of disability, of the right to enter their own country.

2. Children with disabilities shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by their parents.

18(2) is particularly important to one case of refusing a Yukon family residency because in this case the disabled child was born in Canada and thus a Canadian citizen but because the rest of the family were noncitizens, when they were deported, they had to choose to either take him with them (and saving Canada the cost of his care) or leaving him behind (ensuring care but depriving them of him). Basically, Canada was able to deprive a disabled Canadian citizen of his rights by forcing his noncitizen parents into an impossible choice.

It’s hard to know just how often this sort of exemption actually happens. We tend to only hear about it if the family fights back. It is impossible to know how many simply accept their rejections and return to their countries of origin or are denied entry to Canada in the first place.

When stories are publicized, they are frequently very sympathetically presented (even in cases where writers are not opposed to the exclusionary nature of our immigration law. see here for one such example focusing on the Montoya case). I suspect it is because people see these stories as exceptions. The fact that they frequently focus on children also helps tug at people’s heart strings. This certainly seems to have been the case for Canadian comedian Rick Mercer who devoted one of his famous rants to the Montoyas case

While Mercer has some fantastic things to say in his rant. He acknowledges that Nico Montoya will grow up and that in no way undermines his value as a person. He calls out the ridiculousness of predicting how much of a burden someone will be and the related assumption that this means that person has nothing to contribute.

It is however a bit disheartening that Mercer doesn’t appear to realize that this issue is bigger than kids with Down Syndrome. He says,

Apparently there is a war on kids with Down Syndrome that I was completely unaware of.

If he had just stuck to commenting on this particular case or other cases involving permanent residency, I would let’s be honest still be annoyed because the issue is far more encompassing than that but I can understand that sometimes the bigger issue is to huge to tackle all at once. My issue starts with the fact that he doesn’t seem to realize that there is a bigger issue. He goes on to say,

What’s next, we’re gonna say that family can’t come in because that kid in grade eight just failed his math test, or that one’s got a funny foot (emphasis mine)

He says this as though it would be utterly unthinkable to deny someone residency on the grounds of having a “funny foot” but the fact of the matter is that it could very well be a reason for exclusion.

The reality is that this affects more than just kids with Down Syndrome. Hell, it affects more than just kids. Consider Chris Reynolds who was 21 when he was deemed inadmissible on his family’s permanent residency application. His father, Thomas E. Reynolds is a professor (there seems to be a trend here) at Emanuel College at the University of Toronto. Chris was refused on the grounds of his Asperger’s Syndrome diagnosis. This despite the fact that all of his medical expenses were covered by his father’s private insurance, not medicare. There is no followup to the case that I could find but Dr. Reynolds is still listed as faculty at Emanuel College so I can only hope that his reapplication for the family to be considered for permanent residency on compassionate grounds was successful.

Consider also the case of Eniko Reka Kincses and her daughter Boglarka who were denied permanent residency because Boglarka has cerebral palsy. In this case the Saskatchewan government (where they were living) intervened and they were allowed to stay but the reason is worth highlighting,

Health Minister Dustin Duncan and Economy Minister Bill Boyd penned a joint letter of support for the Kincses family to federal officials.

They said Kincses [the mother] was a valuable, skilled worker and assured the federal government the province was willing to cover Boglarka’s “minimal” health care and social services needs”

Enika Reka Kincses wanted to open a care facility, so that she could not only provide care for her daughter herself but would also provide a service that the province sorely needed. Saskatchewan did not see any particular value in Boglarka but rather thought that her assumed deficits were outweighed by the skills of her mother.

This is a trend that continues in both the Montoya and Reynolds cases. The skills and contributions of the parents are highlighted as is to say “on balance if we let them stay at least we benefit from the work of the parents”. Sure, these stories tug at the heartstrings regardless but it’s hard not to wonder how many stories we don’t hear because the parents aren’t highly skilled as an offset to their child’s disability. These stories are more palatable because the disabled person comes with a consolation prize to offset the possible burden they may one day pose.

Disabled people in these scenarios are not seen as having any inherent value beyond that they may be cute children. This is bad enough in the context of what it says about disabled people trying to enter Canada. The problem worsens when you realize that this is essentially how Canada views its disabled citizens.

If disabled Canadians were viewed as having inherent value it would be harder to argue for this discriminatory immigration policy. What the Canadian government and public have to say about foreign disabled people is likely to be a reflection on how those of us who are here by right of birth are viewed.

In order to foster an inclusive society, Canada needs to show that they value all disabled people. Not pay lip service to focusing on those of us who are already here. It’s a little hard to argue that we are valued members of society when people are being excluded from the country for being like us.

Changing the law would not only improve the lives of disabled applicants because they would be considered on their merits (yes they have them, no I’m not suggesting we just let everyone in who applies) rather than have them rejected on grounds that are not only protected under the Charter but in line with international human rights agreements.

Now as I mentioned above, I know Canada is not the only country with discriminatory immigration laws. Everyone seems to be of the opinion that if they open their borders to disabled people, suddenly we will all descend on that country en masse. Again I’m not against all immigration policies so this is absurdly reactionary. Also this mentality fails to recognize that when disabled people are treated like everyone else, we tend to behave like everyone else because here’s the thing that people also miss, if disabled people can come to Canada, we can also leave. People tend to immigrate because they are offered further opportunity elsewhere but I and my fellow disabled Canadians do not have that option despite it being directly addressed in the UNCRPD.

Exclusionary laws like current immigration policy clearly show that the supposed equality we are guaranteed in the Charter of Rights and Freedoms is still little more than a dream. We are in practice little more than tolerated and then only if there is no other option.

It is time Canada led by example and fixed it’s discriminatory immigration policy because both our constitution and international agreement. Changing the law will create a legal precedent to stop the far to common excuse that disabled people are first and foremost burdens. The mentality that allows the odd story of exclusion to hit the news and illicit sympathetic emotions for exceptional cases where there is a cute child or the government seems to have overreached or the loss of a highly qualified parent makes the gamble worthwhile but glosses over the inherent discrimination that created those scenarios in the first place. People don’t want to look at the bigger picture, they are happy to get self-righteous on a case by case basis but ignore or actively support the wholesale exclusion of disabled people.

Changing the law won’t erase prejudice and discrimination in Canada but it will make it harder for those with discriminatory attitudes to justify them. But first the Canadian government needs to address it’s reliance on that prejudice and set an example not only for Canada but for the rest of the world as well. It may become harder for other countries to rationalize their own discriminatory immigration laws with Canada leading by example and advocating for change.

In the end it will help disabled people at home and abroad.