#KiehlsxAutismSpeaks: Buying Face Cream won’t Help Autistic People & Neither will Autism Speaks

 

Matthew McConaughey

Image Description: A screenshot of Kiehl’s Autism speaks campaign video. Actor Matthew McConaughey is on the right. While text reading “with every share Kiehl’s is going to donate $1 to its Autism Speaks campaign   * up to $200,000 benefiting Autism Speaks”

 

There is so much wrong with the #KiehlsxAutismSpeaks campaign that I hardly know where to begin. The campaign has two components, the first is a consumer component which donates a portion of sales to Autism Speaks. The second is a social media campaign which raises money based on the number of shares a video featuring Matthew McConaughey gets on Twitter and Instagram.

 

There are issues with the messaging of the ad. There are issues with the methodology of the campaign self.  There are issues with the fact that the campaign is linked to Autism Speaks which is a very controversial organization within the autistic community.

The ad itself falls into the trap of so many public charity fundraisers for disability. It utilizes problematic language by defaulting to person first language when autistic people tend to prefer identity first language. There is also the focus on autistic children. This is an issue for a couple of reasons one of which ties into the complex connection to Autism Speaks. The other is simply the fact that so many of these campaigns focus on disabled children and tend to forget that those children grow up. This creates a real and serious service gap which tends to leave disabled adults without resources.

The connection with Autism Speaks makes it worse because as a result of their history of minimizing not only the experiences of but even the reality of autistic women, there is a real trend of late diagnosis or non-diagnosis. This means there are countless autistic women who did not have the benefit of services as children and who have to learn to navigate an autism diagnosis as adults with little or no support.

Autism Speaks did this as a result of the historical and inaccurate belief that autism is more common in boys. They created an entire campaign around this misconception. One of their best-known campaigns is likely the Light It Up Blue campaign which was designed specifically to recognize that false reality. Blue was meant to recognize that boys were more likely to be autistic. Despite new and continued research showing that women are systemically underdiagnosed with autism, the campaign continues. Also, focusing on autistic children alone ignores the generations of women who were not diagnosed because autism was not considered to be an option.

Charities, in general, have a tendency to focus on children because they are perceived to be more palatable than their adult counterparts. This has long term consequences in major gaps in access to services and resources by disabled adults. It also leaves a cultural gap where disabled adults simply don’t appear and are thus not expected to actually show up in society.

So charitable giving is often fraught with problematic messaging in general. Autism Speaks however, is more problematic than most. This is because it is both one of the largest “autism advocacy” organizations and it is also deeply unpopular with autistic people to the point that some have labelled it a hate group. The Caffeinated Autistic has a pretty good run down of many of the serious concerns that autistic people have regarding Autism Speaks.

Some of the primary concerns include the generally low percentage of funds (only 3%) that actually get spent annually on actual services for autistic people and their families. So, the Kiehl’s video campaign if it reaches the maximum 200,000 shares will only really amount to $6,000 going to actually helping autistic people. 63% of Autism Speaks’ budget is spent on fundraising and raising awareness.

The kind of awareness that Autism Speaks has raised in the past is deeply troubling. They released a video which I really demonized autistic people and suggested that they invariably ruined the lives of their families. The video tries to make the distinction between autistic people and autism but in reality, autism is not something that is or can be separated from the person.

 

*video transcript at the end of this post

They also produced a documentary called Autism Every Day (link is not to the video but there is a link to the video in this article) which featured a clip of a woman describing her fantasies about killing herself and her autistic child while that child was in the room.

Autism Speaks has a track record of promoting dehumanizing narratives around autism. They also have a history of not having any actually autistic people in positions of authority within the organization (this has changed somewhat recently). They have made some cosmetic changes to their messaging recently but they still largely benefit from their old messaging and they do not challenge or cut ties with individuals and organizations which fundraise and “raise awareness” on their behalf (I wrote about this previously).

So what kind of awareness is this campaign actually raising? I would argue none at all. We are well past the point of being able to count simply acknowledging the existence of autism and autistic people as meaningful awareness. People know that we exist. What we need now is for people to actually engage with creating a culture and a society that actually makes our lives better. As autistic writer, Sarah Luterman points out that Kiehl’s describes their special face cream (which is just a rebranded version of a product they already offered) as “a daily face moisturizer to promote autism awareness.” Luterman then astutely points out “[t]he site does not elaborate how exactly a face moisturizer would promote awareness of anything.”

Hiding behind a celebrity face and making the fundraiser so effortless also endorses uncritical engagement with a very problematic charity. People simply assume that the charity is good because a cosmetics brand and Matthew McConaughey told them so. It does not suggest that they actually engage personally with Autism Speaks in any way or engage with autistic people themselves. It may be a very effective way to raise money but it is a particularly useless way to raise awareness and it is a potentially harmful way to raise awareness. It emboldens an organization which is unpopular with the people it purports to speak for. It is infinitely ironic that an organization which calls itself Autism Speaks has spent the vast majority of its existence speaking over and silencing actual autistic people. In fact, we have our own organizations and engage in self-advocacy. The Autistic Self Advocacy Network and the Autism Women’s Network are too great examples of organizations run by autistic people for autistic people.

This campaign tells people that they can benefit a marginalized group simply by buying something. Not through any actual engagement with that group. Which reinforces ideas of separateness and the continued proliferation of false ideas around autism and autistic people.

It’s a fundamentally dehumanizing use of a saviour narrative which positions autistic people as a group needing to be saved by nonautistic people.

It’s also that truly ineffective approach where people buy something and it supposedly helps a charity. Which presents a very self-serving narrative of solidarity. “Buy a face cream that you’ll benefit from and help someone without doing anything else” That sort of campaigning particularly when trying to help a marginalized group of people is particularly ineffective because for meaningful change to occur in raising the status of an oppressed group actual engagement is needed. This is the opposite of that. This tells people that they can help a marginalized group at a distance without any meaningful action. It maintains the “othering” of autistic people.

Many autistic people have spoken out of about the campaign particularly on Twitter where the Matthew McConaughey video is being widely shared. There is even a change.org petition asking Kiehl’s to reconsider its partnership with Autism Speaks. I would add my voice to those autistic people who are asking you not to support this campaign or Autism Speaks in general.

This kind of ad campaign doesn’t raise awareness so much as it reinforces the “otherness” of autistic people. It suggests that non-autistic people can be the helpers and saviours of autistic people simply by buying face cream or sharing a video on Twitter or Instagram. It fundamentally does not in any meaningful way raise awareness about autism or autistic people.

I would ask that people take meaningful steps to creating a culture and society that is accessible to autistic people and which does not require us to be either cute children or threats to the happiness of everyone around us.

If you want to actually help autistic people and to actually be aware of us, I would suggest the following autistic activists on Twitter (just search for #ActuallyAutistic), reading autistic writers and actively avoiding and speaking out against campaigns which supports harmful organizations and which present sharing the video and buying face cream as meaningful engagement.

 

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*transcript courtesy of the Autistic Self-Advocacy Network

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?

 

 

 

 

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I Have a Patreon Now: Please Help Me Make crippledscholar More Accessible

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The Ineffectiveness of Sentiment Masquerading as Disability Solidarity

UN quote

Image description: Abridged quote from 2016 UN Report. It reads “The State party have met the threshold of grave or systemic violations of the rights of persons with disabilities”

We live in a world that is fundamentally inaccessible to disabled people. Physical access to public space is still a significant barrier. Social policies also make it difficult for disabled people to participate in society. Yet, these issues rarely make the news unless they are perceived as particularly callous.

Consider when Calgary Airport removed wheelchair accessible spaces to put in reserved space for Lexus Vehicles or the proposed dementia tax in the UK. These issues cause outcry and change to those specific incidences. The rage that these situations is inspired by the idea that these sorts of things shouldn’t and generally don’t happen anymore.

It is a long-standing sentimental response to overly callous behaviour. Consider the 1993 Canadian federal election where the Progressive Conservatives were faced with fury over an attack ad that was perceived to belittle then Liberal Leader Jean Chretien based on his facial paralysis as a result of Bell’s Palsy.

Video Description: Audio attacks Liberal policies while still close-up images of Jean Chretien’s face are shown.

This was met with a large amount of backlash. Some even credit it with the Progressive Conservatives (PC) losing the election. Though that is impossible to prove and unlikely considering the PC’s were already low in the polls before the ad ever aired.

Quick rage at easily identifiable wrongs against disabled people is common but it rarely leads to meaningful action or even comes from an awareness of the lived reality of disability.

This is probably best exemplified by the continued referencing and indignance around Donald Trump’s 2016 mockery of Serge Kovaleski. Though he is tellingly most frequently referred to not by his name but simply as “the disabled reporter”.

Outrage over that incident both obscures the racism and Islamophobia that inspired Trump’s actions and essentially reduced solidarity to disabled people to the ability to identify and condemn specific incidences of bullying or discrimination against specific individuals.

This ability for callous treatment of disabled people to inspire the ire of nondisabled people extends beyond election campaigns. Consider this tweet I can across yesterday.

It includes an image of text from a Dear Prudie segment from Salon which reads,

Q. Daughter’s friend being in wedding: My 27-year-old daughter and her best friend, Katie, have been best friends since they were 4. Katie practically grew up in our house and is like a daughter to me. My daughter recently got engaged to her fiancé and announced that Katie would be the maid of honor (Katie’s boyfriend is also a good friend of my future son-in-law). The problem is that Katie walks with a pretty severe limp due to a birth defect (not an underlying medical issue). She has no problem wearing high heels and has already been fitted for the dress, but I still think it will look unsightly if she’s in the wedding procession limping ahead of my daughter. I mentioned this to my daughter and suggested that maybe Katie could take video or hand out programs (while sitting) so she doesn’t ruin the aesthetic aspect of the wedding. My daughter is no longer speaking to me (we were never that close), but this is her big wedding and I want it to be perfect. All of the other bridesmaids will look gorgeous walking down the aisle with my daughter. Is it wrong to have her friend sit out?

Prudence quickly takes the questioner to task for her easily identifiable bigotry.

The key here is that the bigotry is overt and easily identifiable with a clear individual victim.

This is I suspect largely why incidences like this illicit public censure. It is less to do with an understanding of the social realities of disability as a disabled person who responded to the tweet points out,

The issue for nondisabled people is the public display of horrific behaviour, not a real desire to understand how widespread the issue really is. As long as the harm happens out of sight. People don’t seem to care. It is a purely performative and self-serving kind of solidarity. The response is simply condemnation without action or even a real awareness of the extent of the issue.

Horror at these incidences rarely results in meaningful action. Consider when ADAPT activists were protesting the proposed ACA repeal. People stared at the news in horror as images and videos of activists being dragged from their wheelchairs by police. The response predominantly stayed at horror and condemnation. Sure more people than ADAPT were actively protesting the ACA repeal but in the face of horror and condemnation of that specific treatment of disabled activists. The response stayed at horror and condemnation. It did not spark a large solidarity protest at Mitch McConnell’s office. People stayed home and clutched their pearls at the images on their computer and television screens.

Disability solidarity far too often stops at sentiment and condemnation and I can only credit this to the continued widespread ignorance of the realities of being disabled and continued systemic ableism.

How can people express shock at isolated incidences of the mistreatment of disabled people but not me moved to protest the systemic inequality disabled people experience.

In the UK for the second time in two years, the UN has condemned grievous state sanctioned human rights abuses against disabled citizens. That situation did not come from isolated incidences of cruelty performed by a single easily identifiable villain. That situation was created and maintained by the systemic willingness of millions of people across political lines to disregard the humanity of disabled people.

But sure Donald Trump being an asshole to a disabled guy that one time was bad.

In Canada, disabled people experience unequal access to healthcare and are screened out of eligibility to immigrate to the country.

But sure pat yourselves on the back for the 1993 Liberal election victory by misguidingly associating it with a nationwide moment of solidarity against bigotry.

I have intentionally made this post about international realities to really highlight how much farther we have to go than the mere condemnation of easily identifiable moments of bigotry.

Disabled people need more than sentimentality. We need action. We need change. We need people to question their own prejudices and how they might be contributing to the systems that oppress us and keep us from fully participating in the world we live in.

People need to get over the idea that society has moved beyond cruelty to disabled people. It hasn’t and the misguided belief that it has actively maintains systems of oppression.

 

 

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Invisible Disability, Policing & Tracking as a De-escalation Tactic

In the last couple of days, I’ve been seeing more and more discourse on using databases and tracking as a supposed tool to help police officers de-escalate situations involving people with invisible disabilities.

The first article I saw was from Fox and was a mixture of poor journalism and inconsistent framing. I took to Twitter to voice some of my confusion around the consistent framing of these databases as a tool for parents and caregivers despite only talking to an actually autistic woman who used the technology herself independent of a third-party caregiver. That was more a commentary on how stories that primarily impact disabled people continue to centre nondisabled people even when the content of the article does not warrant that centring. I however, want to look at the actual issue being addressed in the article.

I did briefly mention on Twitter that the Fox article does not look critically at the issue at all. It does not question the fact that the service will eventually cost money. Meaning that assuming the initiative works (and that’s a questionable assumption) people have to pay to have their disabilities considered by police. It puts an additional price on safety to be borne by a marginalized group that is disproportionately poor.

The article also doesn’t in any way question whether this initiative will actually help police de-escalate situations involving disabled people without resorting to violence. There are far too many examples of disabled people killed or injured by police even in situations where the police knew they were disabled and even situations where the police were specifically called to assist with a mental health crisis.

It is also important to note that all of the above examples involve people who are multiply marginalized by the intersection of disability with race or gender identity. So it is also worth asking who will these programs actually work for?

Neither the Fox article or a Pioneer Press article about the initiative really engage with that reality. Both articles re specifically about a program called VITAL in which disabled people carry a card which signals an app on a police offer’s cell phone when they are in proximity.

This by itself is alarming in that police will potentially just be informed that there are invisibly disabled people nearby and offer up medical information on those individuals whether they are in distress or not. As the latter article notes,

“Users with disabilities pay between $9 and $15 for the beacon and an additional $9.95 per month for the application — a small fee to pay for the freedom it provides, according to Nelson. She’s had her beacon since February and said it’s “pinged” her information to officers more than 50 times.”

That distresses me. Nelson and I share a diagnosis and I am deeply uncomfortable with the idea of police being routinely informed of my proximity just because I decided to exist in public space. It seems like a recipe for potentially increasing police interactions rather than minimizing necessary ones.

The piece continues by profiling another user of the app,

“Wilford’s 14-year-old autistic son was one of the first people to use the app. Wilford said officers have used the information available 10 times since she downloaded the app.”

I have questions.

Was that child having that regular of contact with police prior to using the app?

This is a child of colour. Has that impacted how he has had 10 actual uses of the app while Nelson whose race is not apparent has had (according to the Fox article, she was quoted in both) only one but 50 proximity notifications sent to police?

Did all of those incidences actually warrant police accessing that information?

The article does not answer them and thus reinforces my concerns that technology like this might increase unnecessary police contact with disabled people by effectively labelling them as potential crises and placing what amounts to tracking devices on them.

Since this story has been getting attention, I have seen other disabled people voice similar concerns. Creating a database for a marginalized population (even if it is currently opt-in) should be a red flag.

Why do police need an app to remind them of de-escalation techniques?

Why is the burden on disabled people to try and inform police not only that they are disabled but give them a step by step guide on how to de-escalate the situation if they are found in crisis?

If police resort to force with a disabled person not registered will they be blamed for failing to inform police that they are disabled?

If the listed de-escalation tactics of someone registered don’t work and police resort to violence, will the disabled person be blamed?

Why is the onus on disabled people and not on police to incorporate de-escalation tactics as a natural part of policing?

So many necessary questions without answers and the safety of disabled people are at stake so why are only disabled people asking them?

 

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#ActuallyAtypical: a Media Roundup of #ActuallyAutistic Thoughts on the Netflix Series Atypical

Reviews

Alternate Atypical: Reimagining Netflix’s Atypical if it were Written by Actually Autistic People

“For some reason, Netflix has classed all of this as a dramedy. The thing is it actually has the basic structure of what could have been a pretty good gritty drama. The show presents Sam and his actions as inherent and unavoidable because he is autistic.And sure there are autistic men who display the same degree of entitlement and sexism. The thing is that this is learned behaviour. So I have tried to reimagine Atypical as if it actually dealt accurately and honestly with what is going on.”

Netflix’s “Atypical” Was a Major Disappointment for Autism Representation

“Netflix did not confirm whether there were concerted efforts to include autistic writers, creatives, or actors in any large roles. Onscreen representation isn’t the same as behind-the-scenes representation, especially if that camera-facing depiction is flawed.”

Netflix’s “Atypical” is offensive, but that’s not its real problem

“On one occasion, when he is about to lose his virginity, he has a freak-out in which he punches a girl as she takes her shirt off. Another time, when trying to seduce his own therapist (ick), he breaks into her house by sneaking into an open window. Elsewhere, he humiliates his girlfriend by proclaiming that he doesn’t love her in front of her entire family.

These aren’t classic signs of autism — they’re violent, creepy, cruel and make the autistic character seem like a monster. When the show then shifts gears to make us feel sorry for Sam, the characterization becomes more offensive. Arguing that those with neurological conditions shouldn’t be held accountable for hurting others is as patronizing as it is socially irresponsible.”

Sarah Luterman has done episode synopses of all eight Atypical Episodes on the website NOS Magazine

Episode 1

“Sam then points out that his therapist’s bra strap is showing, and it’s purple. For some bizarre reason,  Julia doesn’t tell him that this is an inappropriate thing to do. The scene caps off with Julia asking if Sam would like to donate his brain for research purposes. What kind of research? Apparently that isn’t important. She then reassures him that she means she would like his brain after he dies.”

Episode 2

“As Sam narrates how roosters attract hens for mating by putting on a display, we get a flash of Sam’s mother, Elsa, in the bar, seriously considering infidelity. We get more Discovery Channel narration from Sam as his sister waves to the boy she’s interested in. He’s come to watch her track practice. This is dehumanizing. And it’s not just Sam doing the dehumanizing. It’s the show’s writers, making deliberate choices to juxtapose Sam’s discussion of animal mating with human women.”

Episode 3

“In the kitchen, Sam narrates to himself about how humans can’t be perfect because we’re not machines, thereby checking off yet another square for autism stereotype bingo. Some on Twitter have suggested that I create an autism stereotype drinking game for Atypical, but I don’t want to be responsible for any deaths from alcohol poisoning.”

Episode 4

“Elsa gets a text from Nick the Bartender, lies about it, and then accidentally drops her phone, insuring that she misses her daughter’s race. Somehow, this is autism’s fault.”

Episode 5

“A core part of the family dynamic on Atypical is that somehow, Sam’s autism makes everyone around him’s life worse. How, exactly, is unclear. It seems that the mere fact of Sam’s autism negatively impacts everyone around him to a degree where any and all terrible behavior is excused and justified. It’s a completely toxic dynamic. It’s not funny. It’s not even sympathetic. It’s horrifying. I feel sorry for Sam. He’s not the only one who is poorly written and hollow. The people around him are too.”

Episode 6

“After six episodes of a show ostensibly about autism with dozens of characters, an actually autistic  actor, Anthony Jacques, has a bit part as Christopher, another autistic teenage boy. Apparently he originally auditioned to play Sam but didn’t get the part. Robia Rashid, the creator of the show, claims that instead, they hired the “best” actor for the role. The scene Christopher and Sam have together make the artificiality of Keir Gilchrist’s autism act even more obvious than usual. Admittedly, I don’t think that an autistic actor always has to play an autistic character. But in this instance, it would have lent authenticity and subtlety that Atypical completely lacks.”

Episode 7

“Doug takes Sam to Olive Garden to “case the joint.” This means Sam is exploring the space and the menu before his big dinner with Paige’s family. For once, I actually find Sam relatable, although his continued preference to ask people questions while making eye contact instead of just Googling the answers continues to be strange.”

Episode 8

“Treating women like sex objects is not a natural extension of autism. Limiting how often someone is allowed to talk about what they love is abuse, not a real relationship. Autistic women, autistic people of color, queer autistic people and transgender autistic people exist. Autism doesn’t cause families to fall apart. It isn’t even true that families with autistic children have higher divorce rates than the general population. The fact that Netflix could release something like Atypical and run a campaign like #FirstTimeISawMe at the same time shows that Netflix completely fails to understand what disability even is to the people who live it.”

Cultural Critique

Twitter Celebs who are Ableist and don’t even realise it

“The most annoying thing about the responses by Doctor Christian Jessen, a qualified medical professional in general medicine, infectious disease, travel medicine, and sexual health, is that it’s assumed by non-autistics―or allistics―that all medical professionals are experts on mental illnesses, diseases, developmental disorders, neurological conditions, and disability in general. I’m very sorry to inform all of you but you’re wrong. The only experts of a condition, illness, or disability are those who live with it or those who study it extensively and listen to those who have whatever it is they research.”

No, Bad TV Portrayals of Disability are Not Good Learning Opportunities.

“Hey everyone, you should totally watch Atypical  it’s super informative about autism except for the pathologizing of misogyny, the uncritical look at the cult of compliance, the portrayal of autistic people as one dimensional more uncritical takes on using disabled family members as props for personal gain, serious misrepresentation of effective therapy and interventions but yeah, you should totally watch it anyway”

Let me know in the comments if I missed anything.

 

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No, Bad TV Portrayals of Disability are Not Good Learning Opportunities.

Atypical Poster

Image Description: Promotional poster for Netflix series Atypical. The Main cast is lined up on the bottom of the screen Casey (Brigette Lundy-Paine), then only the top of Sam’s (Keir Gilchrist), Doug (Michael Rapaport), and Elsa (Jennifer Jason Leigh) a cartoon thought bubble surrounded by penguins is coming out of Sam’s head featuring the show title and release date (Aug. 11)

“Hey everyone, you should totally watch Atypical  it’s super informative about autism except for the pathologizing of misogyny, the uncritical look at the cult of compliance, the portrayal of autistic people as one dimensional more uncritical takes on using disabled family members as props for personal gain, serious misrepresentation of effective therapy and interventions but yeah, you should totally watch it anyway”

I wrote the previous paragraph on Twitter yesterday in response to someone who suggested that despite Atypical’s extremely problematic portrayal of autism that it was still a tool for learning.

teaching tool

Image Description: A screenshot of a tweet with the tweeter redacted. It reads “Us NTs could use a little awareness. No show will ever completely encompass such huge important topics. But they plant curiosity to learn +”

The problem with Atypical isn’t that it’s merely imperfect. It’s loaded with stereotypes and misinformation. This tweet positions autistic people’s concerns about Atypical as merely whining and an unreasonable demand for perfection rather than the actual protest that it is against the genuinely harmful messages of the show.

I am however going to focus on the last assertion of her tweet, that the show and shows like it create genuine curiosity to discover the truth about the marginalized peoples being misrepresented.

This is patently false. The actions of this person actually exemplify that. This tweet only came about because autistic people had pushed back against their uncritical demand for a second season. It also came after their original rebuttal of “If you don’t like it you don’t have to watch it”.

This latter argument entirely ignores the harm that can occur if people watch harmful portrayals of disability and believe and internalize those messages. Disabled people don’t have the luxury of just ignoring harmful representation. We need to know what happened so we can challenge it.

The fact that they originally wanted me to just check out is entirely indicative of someone who didn’t want to engage with the show in a critical way. The later suggestion that people might use it as a jumping off point to learn about autism was just a last ditch effort to try and deflect uncomfortable criticisms about something they enjoy. They didn’t want to have to potentially feel uncomfortable about the implications of the media they consume.

I have yet to see op-eds about individuals who have watched Atypical or any other awful portrayals of disability that talk about how the show inspired them to take a deep dive into the autistic community and then truly learned something.

The critical pieces I see come from disabled people themselves or from writers who have seen the backlash and are reporting on it and this is by design.

In the last five years or so, disabled people pushing back against awful portrayals has been getting more mainstream attention. (see the pushback against the film Me Before You as the perfect example). This hasn’t resulted in better disability portrayals but it has changed how disability portrayals are marketed.

Now it is almost inevitable that presenting a disability portrayal as accurate and authentic will make up in some part of the marketing of that film or television show. This is certainly true of Atypical where show creator and writer Robia Rashid gave an interview which hinted at a personal connection to someone with autism and where she talked about all of the consultants and parents of children with autism that will present on the sets. She talked about how neurotypical actor Keir Gilchrist had previously worked with autistic children.

We saw the same phenomenon with the film The Accountant. A film, I will remind you whose entire plot revolves around an autistic accountant who was also a skilled and dispassionate killer (he is often described as a hitman, however, at no point in the show or in his back story is he actually ever explicitly paid to kill somebody). Even this ridiculous character whose description is so unbelievable was treated to the veneer of authenticity by their marketing department.

The people making the shows and films are already controlling for the off chance someone will become curious about the genuine authenticity of the portrayal. They are building in safeguards to actually mitigate curiosity. The goal of these portrayals is that they be accepted at face value and they are.

true representation

Image Description: A screenshot of a tweet that reads “@Atypical is such a true representation of autism, I really hope it raises awareness and gives people a better understanding” it closes with a clapping emoji

The person who wrote this tweet later told me in a tweet which they quickly deleted that they had an artistic brother and that’s how they knew how “authentic” it was. considering that the tweet was deleted so quickly that I couldn’t get a screenshot of it I remain sceptical of this claim, though it is far from impossible. The family members of disabled people can, unfortunately, be a major source of misinformation and misunderstanding of disability.

people first

Image Description: A screenshot of two tweets with the original author’s information redacted by images of a tennis ball and of floppy disks (I got the screen shot off of Twitter). The first tweet reads “the “people first” language in this show!!! @Atypical this is so awesome! person then diagnosis! “Child with autism”, not “autistic child”. Second week which is a response from the same author to the first rates “such a huge step forward in the normalization of the importance of mental health! and representation!!”

it is not hard to find autistic people who prefer identity first language. It is widely held to be the predominant preference of the autistic community. So the fact that this individual was celebrating people first language which is contrary to that fact that only shows that they don’t know better but that they will use the show to validate their preconceived notions around language and identity in ways that invalidate autistic people and their preferences.

These are pretty representative of the sorts of comments that portrayals of disability will receive from nondisabled people. They are their internalization’s of that media’s messaging or they will use that media to validate their preconceived ideas. As Twitter user @sorrysorryetc pointed out, the show was so poorly written that it was  often unclear what the intended message was particularly as it pertains to language usage so people are just going to end up taking what they want from the show and not actually interrogating whether or not they have interpreted it correctly or whether the show was wrong entirely.

The mere existence of bad portrayals of disability are not learning opportunities. Watching these shows can be educational if it is done with a critical eye and if it is being fact checked with the people being presented.

For the shows to be truly educational they would need to be accompanied by a comprehensive syllabus and lessons learned would likely not be about disability itself but rather how media helps to construct oppressive systems around disability by misrepresenting them to an audience that is assumed to be nondisabled.

 

 

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According to Bruce Pardy, I Shouldn’t be a PhD Student

In the years that I have spent in graduate school, I have not once been subjected to a timed test. All of the work in my program of study is based on either written work or oral presentations. While this isn’t the universal experience of graduate school, it isn’t wholly unique either. Yet, according to a recent piece in the National Post, I probably shouldn’t be a PhD student.

Bruce Pardy, a professor of law at Queen’s University wrote a piece in the National Post which was based on an academic article he had written in the Education and Law Journal (which thanks to my student status I have access to and was able to read). In both, Pardy makes the argument that students with mental and learning disabilities should not be given additional time to write exams.

His argument relies heavily on athletic metaphors and a semantic deconstruction of the word discrimination. In his National Post piece he begins,

Last week at the World Track and Field Championships, Usain Bolt ran his final race. Andre De Grasse, the Canadian sprint star, missed his last chance to beat Bolt because of a hamstring tear. If, instead of pulling out of the race, De Grasse had claimed accommodation for his injury and demanded a 20-metre head start, no one would have taken the request seriously.

He continues later with his definition of discrimination,

To “discriminate” means to distinguish or tell apart. While the law prohibits certain specific instances of discrimination, telling people apart is not illegal but an essential tool for functioning in the world. People discriminate constantly. They choose to be friends with some people and not others. Employers hire better qualified candidates rather than those less qualified. Distinguishing between people even on prohibited grounds is proper if done for a bona fide purpose.

While it is true that discriminate can simply mean to tell apart. His semantic parsing of the word is used to set the reader up for the idea that people with learning disabilities are simply either genuinely inferior students or students who don’t really have an inherent disadvantage at all. It also serves to create a barrier against rebuttals which would call out his opinions for potentially being the potentially illegal, prejudicial kind of discrimination.

He argues that extra time inherently gives students with learning disabilities an advantage based on what he perceives to be the primary intentions of timed testing, “how well they can think, learn, analyze, remember, communicate, plan, prepare, organize, focus and perform under pressure” (quote from the National Post piece). He assumes that additional time for students with learning disabilities fundamentally undermines these things. In his lengthier academic piece, he claims that arguments supporting the idea that additional time level the playing field for students with learning disabilities are false. His argument is entirely premised on the idea that the skills ostensibly being graded are skills that students with learning disabilities simply fundamentally lack and can be faked by the addition of more time. In both the National Post and journal article he references Alicia Raimundo, a mental health advocate who explains that additional time for students with learning disabilities could potentially mean the difference between a C grade and an A grade.

He disingenuously claims in the National Post “Given enough time, many students could put together a paper that would earn a 90”. The thing is that he presumably knows better or at least has been presented with information that contradicts this assumption. His entire argument is based on the idea that given enough time everyone would do better (thought to be clear students with added time accommodations are still subject to time limits). Yet, in his academic piece he actually references a paper that actively contradicts this assumption. He cites Suzanne E. Rowe’s 2009 article in Legal Writing which makes the complete opposite argument. Not only does Rowe support students with learning disabilities being given additional time on exams, she proves why it’s effective and why it doesn’t disadvantage nondisabled students.

Pardy claimed that many students could achieve a grade of ninety given sufficient time, however, Rowe cites a number of studies which showed that this is not the case. That while students with learning disabilities tended to score better after having been given additional time, students without disabilities had no or only minimal benefit from being given more time.

Despite citing Rowe’s article, himself, Pardy does not engage with any of those findings or acknowledge that they exist. Instead preferring to base his argument against additional time on the insinuation that students with learning disabilities simply do not have the skills to succeed. His evidence? That they perform less well on timed exams when held to the same time constraints as their nondisabled peers. He does not accept the idea that students with learning disabilities are going into such exams with an inherent disadvantage and that the process is already tilted against them and that the addition of time for these students levels the playing field. He is however, unable to explain how students who apparently possess weaker analytical skills, weaker skills in preparation for testing, weaker skills in time management, and weaker focus etc. somehow magically gain those skills when given extra time to write the exam.

Rowe is very clear in stating that those students already have those skills and that during studies on the benefits of additional time, those students who were weaker in preparation and analytical skills still tended to do poorly regardless of being given additional time. Ultimately, at the end of the exam, students are still exhibiting those skills regardless of whether they have been given additional time or not.

In the footnotes of his academic piece Pardy notes that on occasion he receives exams from students who have been given extended time about which he observes “[s]ometimes the answers in those exams are significantly longer than any of the others.”

I have invigilated and graded my share of timed exams for both standard timing and those with accommodations. Even in the confines of the standard exam, there will be students who write significantly more than their peers. This does not necessarily translate into better work or a higher grade. In terms of exams that included accommodations including addition of time, they were not all stellar and I have failed students who wrote extended exams because the content of their exam did not merit a passing grade. Pardy does not expand on whether the longer exam was in fact a better exam. The insinuation seems to be that because the student was able to write more content that they somehow did not require the accommodation or that this somehow proves an unfair advantage when it is in fact just an anecdote which lacks context.

He is in effect dog whistling the idea that students with learning disabilities may not deserve their accommodations and may not have learning disabilities at all. He laments the fact that in some Ontario universities (mine included), students with mental disabilities are not required to disclose their diagnosis. They simply require a letter from their doctor outlining the fact that they have medical needs and that those needs require specific accommodations which the doctor then outlines.

He implies that students may be lying about their conditions when he says “Typically, only a medical note is required to get accommodation, even though many clinicians rely on self-reported symptoms to measure impairment.” In his journal article, he is frustrated by the limited power that he and universities have to interrogate the validity of accommodation requests. As though, the university’s nonmedical staff might know more about the reality of a particular diagnosis then does an actual doctor.

His prejudice against people with learning and mental disabilities is clear in his continued support for the accommodations of students with physical and sensory disabilities. Some of whom he seems blissfully unaware might also benefit from additional time as a result of their disabilities.

In the National Post he argues, “Other kinds of disabilities can be accommodated because they are not what the exam is testing. Blind students, for example, may need to access exam questions with a text reader.” Those same students may also require the use of a computer and dictation software to answer those questions. They might also require text-to-speech software to listen to what they have written in order to ascertain that there are no errors in dictation. This is a time-consuming process. Dictation software is notoriously finicky (I would know I am writing this piece using dictation software right now). Failure to properly proofread and edit text written with dictation software might result in submitting something that has sections which are entirely incomprehensible (or in the case of this article, that Bruce Pardy be routinely refered to as Bruce party). Does the validity of the accommodation end as soon as it might require added time? Or is it a legitimate accommodation?

Fundamentally, Pardy premises his argument on the idea that allowing additional time for students with learning disabilities is unfair to students not given additional time. While I have already addressed why this is a weak argument and that students are not actively disadvantaged by having their disabled peers be given additional time, in his journal article Pardy persists, “[s]tudents have a direct and personal interest in the conditions and criteria imposed upon the other members of their class. They have a stake in the fairness of the competition.”

This argument boils down to the idea that students with learning disabilities should not be given additional time because their classmates would think it was unfair. Basically, privileging the prejudicial opinions of classmates over the rights of disabled students.

This is likely why Pardy focused on the false argument that everyone or at least many people might benefit from being given this accommodation. It makes the output seem unfairly weighted in favour of disabled students.

Not only is there no evidence that this is true in the case of granting additional time, it is not true of some other other accommodations where nondisabled students might feel disadvantaged. As an undergraduate I benefited from not only additional time during exams but also having a notetaker. The former accommodation was relatively easily hidden from my classmates as I wrote exams separately. Having a notetaker was not so invisible and I was occasionally confronted by resentful classmates who suggested that I should not be in university or claimed the same argument as Pardy that “everyone would benefit from that”. Again, this is untrue. It has been suggested that students who take their own notes, particularly if they are hand written tend to retain information better. Having a notetaker simply allowed me to have access to notes that I would otherwise not be able to take myself. I was actually still at a disadvantage because I could not access the added benefits of taking my own notes. The injustice was entirely in the perception of different treatment not actually in the outcome of my academic achievement.

Pardy repeatedly claims that allowing students with learning disabilities to have additional time on exams is somehow comparable to allowing an athlete to run a shorter race than their competitors. This is however a false equivalency, it is entirely dependent on the assumption that students with learning disabilities were already on a level playing field with their nondisabled peers and that the accommodation gave them an advantage when in reality the accommodation seeks to erase an inherent disadvantage. Either, that or it assumes that the disabled students should not be taking the exam at all. This seems the more likely of the two as he utilizes the story of De Grasse, an athlete who sat out of a race because of an injury. The implication is clear, if you are unable to perform within the constraints set by the professor, then don’t show up. Pardy would likely dispute this as being his intention but it is a logical conclusion based on his sports analogies. It has to be assumed that students with learning disabilities are either the athlete who was right to sit out or be an athlete with an unfair head start. There is no room in Pardy’s argument for the reality of academic disadvantage that can be controlled for through the reasonable accommodation of extra time.

So, convinced is he, that students with learning disabilities have no inherent disadvantage that in his academic piece he takes the comparison to even more absurd lengths,

If a professor granted extra time on the exam to Caucasian students, the others would obviously have a complaint under the Code. If she gave extra time to five students who did renovations on her house, the rest of the class could well seek administrative law remedies.

He equates racism and potential bribery with an academic accommodation for disability. The only reasonable explanation as to why he feels this a fair analogy is if he discounts the reality and validity of learning disabilities.

He also seeks to limit how people can disagree with him. Through his parsing of the word discriminate. He seeks to suggest that people who would call his opinions discriminatory (in the sense of social disadvantage) are over reacting. He seeks to rob people of the language to express how problematic his opinions are by setting up a scenario where that word no longer means what it is culturally understood to mean and what it usually means specifically in circumstances like this one. He wants people to believe that it isn’t an inappropriate kind of discrimination to openly imply that students with learning disabilities are either measurably inferior or simply fakers seeking an unfair advantage. An advantage that research shows doesn’t even exist. In the unlikely event that a student hoodwinked a doctor into an inaccurate diagnosis and gained extra time. The research clearly suggests that they would not benefit. They would simply be stigmatizing themself.

And if Pardy has done nothing else, it is show what sort of prejudice exists against people with learning disabilities in academia. He also shows just how comfortable some people are in utilizing that prejudice to justify discrimination.

Under Pardy’s argument, I should not have reached the level of graduate student. Much of my undergraduate academic success is as a result of academic accommodation. Interestingly enough, I only sought academic accommodations which did include additional time on exams after the urging of one of my professors who saw how much I was struggling and realized that I could and deserved to do better.

Professors like Bruce Pardy rely on the public acceptance of misinformation. And he is misinforming them. He has read Suzanne Rowe’s work which contradicts the very foundations of his arguments and yet he not only fails entirely to substantially contradict it but ignores the existence of this conflicting information altogether. It is based in prejudice and is only sustained through the widespread acceptance of that prejudice. His argument is based on the acceptance of statements that he has not proven and are maintained through an attempt to sow the seeds of doubt around the validity of learning disabilities and the real needs of people who have them. Not through evidence but through implication.

According to Bruce Pardy, I have potentially illegitimately taken one of a limited number graduate spots from a more deserving (read: nondisabled) student. That I might lack the critical thinking skills to truly deserve to be a PhD student. But then again, I didn’t write and publish an article in a journal defending prejudicial treatment against students with learning disabilities that included a reference to an article that completely contradicted my argument and then pretend that I had not been exposed to those ideas.

 

 

If you liked this post and want to support my continued writing please consider buying me a metaphorical coffee (or two or more). Donations help me keep this blog going and support my ongoing efforts to obtain a PhD.

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