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.

 

 

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

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)

I have now completed watching all eight episodes of the first season (it ended on a cliff hanger so they’re clearly angling for a second) of the Netflix series Atypical.

It goes without saying that this post will include spoilers and quite frankly you’re welcome. Now you don’t have to watch it.

The show is in a word terrible. The autistic character Sam has no perceivable personality and is largely just a collection of autism diagnostic criteria and stereotypes. His only driving factor is to get a girlfriend.

Pretty much all of the characters are irredeemably awful.

Elsa, the mother is the archetypal overbearing autism mom. She is controlling to the point of actually damaging Sam’s ability to function in the world. The show doesn’t actually really concretely address the extent of the harm. She is attention seeking and presents herself as a martyr on the altar of autism. Every horrible thing she does is blamed on Sam, from ignoring her other child to having an affair.

Doug, the father starts out promising but turns out to be awful. initially, he just seems to be cluelessly but genuinely trying to connect with his son. It is later revealed that after Sam was diagnosed he left the family for eight months because he couldn’t deal. He spends the series which takes place well over a decade later enabling Sam’s creepy misogynistic behaviour under the excuse of trying to make up for leaving. He does have some good lines challenging some autism moms person first rhetoric but in the context of everything else he’s still awful.

Casey, Sam’s younger sister is the only genuinely likeable person in the show. She treats him like a human being, though she uses him as a prop to further her own goals by referencing him in her interview to get into prep school. This is actually pretty realistic and in a better show might have been a genuine commentary on how even loving accepting family members can be ableist. Unfortunately, Atypical is not that show. Claire is the most well rounded and complex character in the show.

Evan, Casey’s boyfriend is a nice generic good looking boyfriend. Pretty much sums him up. They hint at a difficult home life but it’s basically a failed attempt at making him not a generic boyfriend character and as an excuse for why he’s a convenient human lie detector.

Julia Sasaki, Sam’s therapist, doesn’t know how to be a therapist. She’s ostensibly supposed to be helping him with life skills but can’t even set up clear boundaries. The first indication that Sam is creepy and doesn’t know how to talk to women is when he points out her bra strap is showing. She’s embarrassed but doesn’t use the opportunity to tell him that this might be an inappropriate behaviour. This foreshadows the rest of the show. Where Sam invariably gives someone a lot of warning that he might do something shitty and that person does nothing to stop it. No one explains anything to him in accessible terms.

Zahid, is Sam’s only friend and coworker. On the one hand, Zahid is truly accepting of Sam which is great. If only that wasn’t entirely undercut by his cartoonish level of misogyny and the fact that he eggs on an facilitates Sam’s being a creepy piece of shit.

Paige, Sam’s (ex)girlfriend, while Sam does treat her abysmally which is inexcusable, Paige also takes advantage of him and creates a controlling relationship where she defines all aspects of the relationship. She won’t let him talk about the things that interest him and in fact, implements a punitive system to limit his ability to steer the conversation.

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.

The show would need more autistic characters to act as counterpoints to Sam. This could be achieved by having autistic activists who engage with Elsa at one of her autism walks. They would challenge her and of course, she would inevitably utter the all to common phrase “you can’t speak for my child”. Elsa would double down on her awful behaviour which would be reinforced by the uncritical support of her autism mom’s support group.

The inclusion of other autistic characters would help clear up the issue around the group’s use of language. Showing autistic people unapologetically identifying as autistic and owning their identities would throw Sam’s harsh reality into sharp relief.

Sam would spend more time second guessing everything he says because his mother’s constant control would have destroyed his self-esteem. The show would make it clear that he has no escape at home from the bullying he experiences at school because home is just a different kind of abuse.

It’s hard to figure out what to do with Zahid because in Netflix’s version he is the only person who genuinely accepts Sam. Realistically though his blatant sexism is likely what would trigger Sam to conclude that a girlfriend would fix all his problems. I hate getting rid of the accepting force but realistically the contradictions of the character don’t work well.

More realistically, after finding no acceptance at school or home Sam would be ripe for coercion and abuse from someone who presents a veneer of acceptance. Someone who thinks it’s funny to put Sam into uncomfortable situations with women. Not someone who genuinely thinks they’re helping.

Sam’s first attempt at a sexual encounter (which ends in him hitting the woman he’s with) might at least flirt with actual consequences. Maybe She calls the cops and they send an ambulance which is conveniently staffed by Sam’s EMT dad who talks her out of pressing charges.

This would at least more concretely deal with explaining why Sam has built up this idea that his words and actions have no meaningful consequences beyond how they make him feel.

Clear parallels would be drawn between Elsa and Paige and show that Sam is essentially exchanging one controlling relationship for another.

Julia Sasaki would be as ineffective and there would likely be more direct controntations between her and Elsa. the show might actually show how therapists and medical professionals buy into stereotypes of disability and how this invariably hurts their patients.

Paige would still plan the silent dance but she’d likely call the media and be publically celebrated for her altruism.

Casey wouldn’t change much but a better show would offer more context about her. Show how she learned that it was okay to use her brother as a prop. Interrogate why the prep school interviewer not only let her get away with it but bought into it completely.

That is what would make Atypical more real. Really, however, a better show would humanize autistic ppl and not turn us into victims. A better show would move away from the autistic white boy norm. An actually affirming autistic love story might include finding a partner who is able to communicate more clearly. This might allow for a more realistic portrayal of romantic and sexual exploration.

What about instead of a first failed sexual experience that ends in violence. Sam still gets overwhelmed but that’s okay. What if instead of ending the season with a hand job in an igloo. Sam has a partner who is willing to try different sexual activities so that they have a mutually enjoyable experience. What if a handjob is shown as a more comfortable introduction to sexual activity? What if that’s where he stays comfortable and that’s okay? What if he was in a relationship where he understood that women are people and so they used creativity to make sure that he is able to reciprocate for his partner?

What if his mother wasn’t sexually repressive?

What if he had autistic friends? If not in person then online.

What is an autistic love story was written by autistic people and a major company actually produced it?

What if…?

 

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Okay, So I Educated 1 Nondisabled Person, Only 6 Billion to go.

It is a truth universally acknowledged that a nondisabled person in the company of a disabled stranger wants to know “What is wrong with you?”

Tell them anyway

Image description: Screenshot of a tweet with author redacted that reads “It’s not your job, no, but people are naturally curious. What’s with the hostility? when you could use the opportunity to educate instead? :/”

This tweet was shared in response to someone who had just explained not only that they did not want to answer people’s random questions about their disability but also that they found the practice to be emotionally harmful.

I have written about this phenomenon before but as it appears to not be diminishing, I’m going to talk about it some more.

I certainly hope the title of this piece has sufficiently set up the absurdity of the idea that expecting disabled people to act as surprise ambassadors to whoever feels the need to ask probing and personal questions.

As an education model, it is simply unsustainable. Even if you had the entirety of the world’s estimated 1.5 billion disabled people in on the scheme. A single disabled person simply cannot explain the entirety of the disabled experience.

It would require the world to engage in a bizarre version of speed dating where individuals cycled through disabled people to get anything but an individual and monolithic view of disability.

The thing is this “natural curiosity” isn’t actually genuine interest. It’s a voyeurism that comes with an inherent power imbalance.

If a person had a genuine interest in learning about disability, it is something that can be done without accosting random disabled people. Not only does Google exist but so do libraries. Either of those venues is infinitely better suited to genuinely learning about disability.

Libraries even have employees whose entire job it is to help you find information tailored to exactly what it is you want to know.

The thing is that most people who throw up wanting to learn as a defence against the suggestion that disabled people are entitled to privacy don’t really want an education.

Because if they did they would have learned the lesson that the disabled person just tried to teach them. No, is an appropriate and entirely valid response to probing questions.

Or the lesson that sometimes these questions aren’t mere inconvenient invasions of privacy but actually cause people emotional harm.

These are lessons. Expressing them is not hostile.

These people don’t want to learn. They want an emotional payoff. Sometimes this can come with as little information as naming a diagnosis.

Seriously, what can really be learned from what amounts to medical jargon?

It’s less an education and more of a way for a person to categorize how they think you are broken.

True learning takes time, engagement and a respect for the subject. None of which is present in unsolicited questions demanding medical information and prying into only the more graphic aspects of disability.

This tactic does not work as an education tool and it never has.

I challenge you to cite a single major advancement in disability rights that occurred because of it… I’ll wait…

No? hmm.

The education excuse, on the other hand, has been used to maintain the exploitation of disabled people.

In the late 19th Century when displaying disabled people in freak shows began to go out of fashion as a direct result of the fact that they were viewed as exploitative. The displaying of disabled people did not stop. They just changed the narrative.

consider Krao Farini

 

L0047972 Krao - The Missing Link

Image Description: A promotional poster for “Krao” The Missing Link. It shows an illustration of Krao a small girl with hypertrichosis standing in a jungle wearing only a loin cloth.

Krao was a supposedly Laotian child (her origins are difficult to ascertain as her background was heavily fictionalized) with hypertrichosis who was exhibited after many freak shows had closed down. She was exhibited not as a freak but as a scientific discovery. A distinction which allowed Guillermo Farini (who adopted her and exhibited her) to escape claims of exploitation. She was marketed as the missing link.

She was a disabled woman of colour whose exhibition reduced her to subhuman. Make no mistake Guillermo Farini was not actually under the impression that she really was the missing link. In spite of the veneer of educational value, Krao was advertized with a fantastical backstory which included heroic white men trudging through the jungle and outsmarting the primitive locals, including royalty. You can read it here *.

Education has been used as a veneer for the exploitation of disabled people for centuries. It wasn’t true then and it isn’t true now.

The expectation that disabled individuals answer any question that they don’t want to is absolutely not a path to greater understanding. It is an expression of dominance.

Hiding behind the idea of some mythical educational value only compounds the oppression.

Learn the lessons we are trying to teach you when we say no. They are much better lessons than getting someone to share a diagnosis or other private medical information.

Or better yet, don’t ask at all. If you are genuinely interested in learning do it in a way that doesn’t demand unpaid labour from disabled people. There are after all many alternatives.

 

*The images aren’t screenreader friendly so I’m adding a PDF that can be run through an OCR program

Krao Pamphlet Full

**This post is inspired by a twitter thread I did earlier today and can be read here.

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We Still Don’t Know Their Names: Sagamihara a Year Later

A year ago 19 disabled people were murdered (with an additional 26 being injured) in Sagamihara at the Tsukui Yamayuri En residential care facility. Today as I think back to that day, I feel very similarly to when I first found out about the attack. The horror of it is still raw. I expect that I will always feel this way not just because of the level of hatred and violence perpetrated against disabled people simply because they were disabled but because of how erased they are. We do not know their names and probably never will.

L’Arche Internationale released this video as a memorial. It is beautiful and poignant but the imagery of the nineteen paper cranes while beautiful also highlights the anonymity of the victims. They remain not individuals but a homogenized group of victims tethered together by disability.

This is the injustice that keeps the pain so raw. That their humanity and individuality can only be affirmed by trying to create associations with other named disabled people.

They remain mysteries. We will never know them. What brought them joy. What made them themselves.

L’Arche is not the first to utilize the imagery of paper cranes in relation to this tragedy. Shortly after news broke this image which I believe is by Christina Lee (please correct me if I’m wrong)

Christina Lee Paper Cranes

Image description: Nineteen pink paper cranes are arranged in the shape of a heart on a whiteboard.  #SagamiharaDVP is written in the centre of the heart

This image which was one of the first tributes to the victims that I saw has stuck with me. It is simple and beautiful. I am however saddened that a year later, the imagery of nineteen paper cranes is still the memorial. There are still no names or stories to tell us that the victims were,

Creative

Stubborn

Funny

Active

Calm

Beautiful

Active

Kind

Friendly

Charming

Determined

Gentle

Hopeful

Assertive

Graceful

Helpful

Loved

Important

Equal

Nineteen Paper Cranes

Because We Still Don’t Know Their Names

 

 

 

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My Son’s Swim Coach’s Second Cousin’s Wife has a Student With Cerebral Palsy: The Disability Anecdote

The disability anecdote is something that I’m sure most if not all disabled people have faced.

At its most basic it can simply be someone, having discovered they are in the presence of a disabled person who feels compelled to create some bizarre sense of false common ground.

The scenario generally involves a nondisabled person finding out that you have a particular disability.Perhaps as a result of casual conversation but more likely because they have asked an invasive question. One that has very likely been phrased some thing like this,

“I’m sorry. I don’t mean to be rude but what wrong with you/your [insert visible characteristic of disability]”

If the disabled person is cooperative or just doesn’t want to deal with the backlash of refusing to answer and actually obliges the questioner with their diagnosis it is not uncommon for the nondisabled person to then respond with.

“Oh my [insert vague and often several degrees separate aquaintance] with that/some other disability that they perceive to be similar but probably isn’t”

They then look at you expectantly and I for one still have no idea what to do with these interactions. Do people really expect to be congratulated for being able to come up with a single example of another disabled person that they or just as frequently someone they know has encountered at some point?

Are they trying to tell me that I am not alone?

Are they trying to tell me that they are not completely ignorant of disabled people?

If the latter, they are failing just through their approach. Yet, nondisabled people seem to love to share these anecdotes which prove nothing more than how invisible disabled people are to them. Seriously, considering the percentage of the population that is disabled (generally measured around 20%) these anecdotes really just show how far we have to go in terms of visibility and public access.

These instances are troubling but they are also a more benign (on a very malignant spectrum) version of the disability anecdote.

These anecdotes also come up in opposition to disability rights activism. They most often come from nondisabled people but are also offered by disabled people whose disabilities may differ from that of the people doing the advocacy. These anecdotes generally go like this,

Disabled person: “This action/image/policy is particularly harmful to people with X” (often followed by a list of reasons and evidence of that harm)

Nondisabled person/person with different disability: Well I know someone with X and they are perfectly fine with it”

These interactions are infuriating because they are entirely premised on the idea that the opinions of disabled people can be trumped by the mere mention of a possible counter opinion by a different disabled person. This false idea also appears in conflicts that occur between disabled people–“well I’m also disabled and I don’t agree with you so…”–but in those cases, they can be challenged or the detractor can be asked to justify or explain their position. When the hypothetical disabled person (and yes I often doubt they actually exist) is just an anecdote, the argument hinges entirely on the fact that there exists an alternate viewpoint not on whether that viewpoint has merit or can withstand questioning or scrutiny.

The implied rightness of this hypothetical opinion tends to be based entirely on the fact that it continues to allow the maintenance of the status quo. A disabled community asks for change and someone pops up to say that no change is necessary because “they know someone with that disability”.

An absent disabled person whose opinion cannot be challenged or even confirmed and yet is expected to be not only believed and respected but adopted.

It is particularly frustrating when these anecdotes come from parents who use their disabled children as weapons with which to beat disabled adults.

In these cases, I always wonder

Does the child actually think this?

Is the child old enough to think critically about this issue?

Regardless of age, where and from whom is the child learning about disability as a lived experience?

Does the child have access to alternate opinions or is it safe to assume that they may be parroting opinions on disability that they have been presented by their parents and broader social group?

Does that social group include people with disabilities?

I have these questions because as a disabled adult my understanding of disability has changed drastically from what I thought as a child. I fully acknowledge that many of the views I held back then were toxic and built on internalized ableism. I simply did not have the critical thinking skills to do anything but accept the worldview I was offered by the almost exclusively nondisabled people around me.

And yet, disabled children are effective weapons against disabled adults because it is not acceptable to publicly question them. You cannot reasonably ask parents who claim to speak on behalf of their children to produce them for confirmation and clarification.

Even when the anecdotal disabled person is an adult it’s considered inappropriate to question the validity of their argument too closely. This is a direct result of the paternalistic ideas around disability that society holds. You are not supposed to overtly and publicly challenge disabled people even if you yourself are disabled. It is often perceived as an unreasonable attack.

So anecdotal disabled people continue to be an effective weapon against calls for systemic change. They may not be effective at changing the minds of the disabled activists their hypothetical views are used to oppose but they are popular with those who do not want to change. Those people can be comforted that they need take no action. That they need not interrogate the way they think about disability.

I see these anecdotes in all their shades so frequently that I also wonder, how often am I being used as precisely that anecdote (because odds are that I am) and by whom? What views are being attributed to me when I’m just someone’s neighbour’s second cousin’s wife’s former swim student with cerebral palsy/autism?

 

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Undesirable: Toxic Romantic Dreams, Disability, Sexuality and Relationships

sexy ISA

Image Description: A stenciled modified image of the International Symbol of Accessibility, A presumably male stick figure in a wheelchair being straddled by another stick figure who is presumably female because of the addition of a ponytail hairstyle.

CW: This post contains discussion and descriptions of sexual harassment, violence and bullying

Considering the Kathy Lette article in the Daily Mail (which I wrote about here and Carly Findlay wrote about here). I want to offer my own narrative of disability and sexuality, a narrative that isn’t driven by a parent or other third party.

It is often said that disabled people are perceived as nonsexual and this is certainly the experience of some people. I previously wrote a response to this New York Times piece Longing for the Male Gaze. As problematic as I found the author, Jennifer Bartlett’s romantization of sexual harassment, I do understand it. While I do not and never shared that particular longing. I do understand the creation of problematic desires and fantasies created around cultural expectations of romance and relationships. My personal experience, however, was not so much marked by being viewed as nonsexual but rather simply undesirable.

In fact, my sexuality was not only acknowledged it was used as a weapon against me.

For as long as I can remember I have been excluded. It was the first form of bullying that I experienced as a child. Starting in kindergarten and continuing through to the end of high school. While that exclusion in those very early years was certainly not tinged with romantic rejection—we were all too young for that—it set a precedent for my being denied even friendly personal relationships. It created a deep desire within me for inclusion and acceptance.

As I got older the bullying became more direct and aggressive. From about grade six onward, harassment from girls in my class often contained aspects of sexual humiliation. From being cornered at my desk and being told that if I wasn’t already a lesbian I would be within a year to mocking me when they realized that I didn’t wear a bra.

As a physically disabled autistic person, bras have been a source of stress since I started wearing them. They are often inaccessible and more often uncomfortable. Yet, within days of the first comment about my lack of bra (I really didn’t need one), I started wearing sports bras (the only bras I could stand to wear at the time) just to stop the comments.

Eventually, the bullying turned to my relationship status (or more accurately my lack of one). The girls first dropped a note off at my desk which said: “Maybe if you got a boyfriend, you’d have more friends”. They later cornered me to deliver this message in person. I clearly learned that being in a romantic relationship might lead to broader social acceptance. I was, however, unable to acquire the boyfriend necessary for this entrer into social acceptance.

In elementary school, I was told I needed a boyfriend to be socially valuable. In high school, that message continued but it was also clearly accompanied with the message that no one would ever want me.

The very idea that someone might be interested in me was unthinkable and the source of much amusement for my classmates. In grade 9 one of the girls’ favourite torments would be to try and determine who I had a crush on. They used whether I blushed as evidence—I am very pale and blush easily—they got a lot of amusement out of embarrassing me in front of whatever boys happened to be present.

In high school, the boys joined in this abuse. It started with my being mock proposed to repeatedly to the uproarious laughter of the audience.

It culminated into an incident in grade twelve where four boys cornered me alone in an empty classroom and explicitly described pornography in detail and mocked my embarrassment, telling me that if I couldn’t handle such information that no one would ever want me.

When I reported the incident to the school, I was told that I probably misunderstood what had happened and that the boys probably didn’t realize that they were bothering me. Because disabled women can not only experience sexual harassment, they can also have it minimized and ignored when it happens.

The idea of dating me was so much a joke and a repugnant idea to my male peers that having it suggested that they were dating me was an insult. A rumour started that I was dating my science partner (because if you so much as speak to a member of the opposite sex in high school, regardless of context something sexy must be going on). He blamed me for the rumours. He got so sick of denying them that he eventually found me alone in a hallway one day and screamed every insult that he could think of at me. There was a small justice in this instance because he didn’t see the health teacher come up behind him and witness the entire tirade. He was swiftly and loudly told off.

Through all of this, I was hyper aware of what made me different from the other girls who were not treated with the disgust and scorn that I was. Namely, the fact that I had cerebral palsy. I became hyper aware of anytime someone might have to come into contact with my left hand (the most visible aspect of my CP).

As a kid, I participated in a lot of group activities whether it was church youth group, brownies or that time I participated in French Youth Parliament (my French really wasn’t up to the challenge). As a consequence, I frequently found myself having to play ice breaker games. One that always seemed to be played was where everyone stood in a circle and grabbed the hands of random people across from you. You then had to twist and wind between people’s hands to try and return to an untangled circle.

Every time this activity was announced, I had a moment of panic because I always feared that when I reached my left hand out, that no one would take it. Though someone always did.

It wasn’t until I was 22 and in a cultural exchange program that some failed to take my left hand when circumstances dictated they should. We were dancing to Malian music in a line holding hands and when the Canadian group leader joined the line he grabbed wrist instead of my hand. I was startled and just blurted out “you can take my hand”.

“Are you sure?” he asked, he clearly didn’t seem to want to.

“Yes”, He did it reluctantly and soon decided to leave the dance.

These fears of being rejected in social settings and the continued messages that I was undesirable did not culminate in my wanting to be perceived as a sexual object like Jennifer Bartlett but they still left me with toxic dreams about relationships.

I didn’t dream of being seen as a sexualized ideal. I just wanted to be loved and included. Getting this attention from one person would have been enough. I was desperate for it.

The desire to be loved and wanted is not in and of itself dangerous or unhealthy but it can be when you’ve been told over and over again that you are undesirable and that this undesirability is also what makes you a social outcast. I was also clearly told that I was so undesirable that to be seen with me would have social consequences for anyone willing to be with me. This lead to expectations that any relationship I had would likely be isolated from the rest of the world. While I heavily romanticized this scenario as a teenager and young adult, I am well aware now that this kind of dream and the level of desperation that I had for it, left me at serious risk of abusive relationships.

This is evidenced by how I behaved around and responded to boys I had crushes on. I wanted so badly to feel loved, that I would pretty much develop a crush on any boy who would initially speak to me with any degree of kindness. When I was 16 this meant I was infatuated with a boy who was initially very charming but in reality, had a deeply misogynistic streak to him.

I can’t remember what precipitated the incident (I think I had said something sarcastic to him) but one day when we were rehearsing for the school musical he slapped me hard across the face. It was witnessed by the stage manager (another student) who came over ready to punch him for having hit me. I talked him out of it and while it was probably best that they didn’t get into a fight in the school gym, I wasn’t trying to de-escalate a fight. I was defending the person who had hit me. I still wanted him to like me.

I am not sure when exactly when I was able to start thinking critically about those toxic romantic dreams. I suspect it began after I actually found social spaces where I was accepted as a friend. This didn’t do anything to ameliorate my romantic prospects but I did finally have a space where my desirability as a sexual or romantic partner was not held up as necessary for social inclusion. A relationship was not a social status symbol and association with me was not cause for a person to be mocked.

The thing is that this didn’t really start to happen until I reached grad school. I was also in Disability Studies which attracts a disproportionate number of disabled scholars. In my master’s program, I was one of three people with cerebral palsy and there were many other disabilities represented.

This was huge in terms of creating a sense of self-worth and community but I shouldn’t have had to wait until I was in my late twenties and surrounded by people with common experiences to be accepted.

This is why first person narratives of disability are so important, particularly in relation to sexuality because we can talk about the social impact of being deemed undesirable. Third person narratives like those of Kathy Lette about her son really just buy into the social stigma and work with it rather than challenge it.

Her son asked her if he would ever get a girlfriend. A question to me suggests a desire not just for sex but for a relationship, a prolonged romantic experience. Lette’s response was to consider hiring a sex worker which really meets none of those desires even if sex is a desired part of a romantic relationship.

Considering hiring sex workers as a solution even in part to the issue of the widespread cultural disinterest and even disgust with the idea of sex and romantic relationships with disabled people is in some ways to accept and fail to challenge those ideas.

A sex worker is not going to offer a relationship beyond what is agreed and paid for. Disabled people know this. It is not a comparable substitute for actually being accepted and wanted.

I want and deserve meaningful human relationships both simply social and romantic. These are not things I can buy. In order for me to be able to have them. I need people to actually interrogate why disabled people aren’t seen as options for romantic partners. I need more than the platitudes I received from a male friend at 18 when in a moment of bravery I shared my insecurities and the sentiment that no one when I fantasize about an as yet unseen and unmet lover, thinks of someone like me. I even asked him outright if he had ever thought about dating a disabled person.

He deflected by magnanimously claiming that he was open to falling in love with someone who was disabled. He would however not answer my question directly because of course, he had never actually considered it. He, however, wouldn’t directly admit as much because to do so would be to admit to an internalized bias and discrimination.

I want people to be aware not only that disabled people are sexual beings but also be aware of the widespread messages that they tell each other and disabled people about how we are undesirable. I want them to understand the harm that causes and how it sets people up for potential abuse. It goes beyond them simply not considering having a disabled partner.

I want those ideas directly and actively challenged. I want to see disabled people culturally framed as beautiful and I want this to happen without a flurry of think pieces on how progressive it is. Those think pieces are evidence of how strange it still is how people still feel the need to applaud it. The change will come when disabled people can be portrayed as beautiful and sexual and the response is to agree and admire that beauty without qualification.

I don’t want any more disabled people growing up to be told that no one will want them just because they are disabled.

 

 

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