Katimavik Completely Changed My Life for the Better but I have Misgivings about it Coming Back

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Image Description: A photo of nineteen year old me crouching in a refrigerator that has had all the shelves removed. I had short bleach blond hair and am wearing a white hoodie featuring characters from Charles Schultz’ Peanuts comic.

 

When I was 18, I was diagnosed as being autistic. I finally had an explanation for all the social misunderstanding and interpersonal faux pas I’d experienced. I now knew that every time I was punished for some mysterious crime with the all too frequent admonishment ‘It’s not what you said, it’s how you said it” were not my fault. All those hours spent relegated to my bedroom wracking my brain to try and figure out why I was even in trouble suddenly made sense. Diagnosis for me was freeing. It was, however, still a diagnosis which said that I was medically predisposed to be terrible at navigating social situations, particularly in new environments with people I didn’t know.

So, obviously three months later I got on a plane to BC with the full knowledge and intention of moving into a house with eleven strangers.

I did this through a government-funded program called Katimavik which took Canadian or permanent resident youths (between 17-21) from all over Canada and divided them into groups of 11 and over the course of nine months placed them in three communities throughout Canada with a different project leader in each location. The intention was for us to do full-time volunteer work, establish strong links to volunteerism and engage with the varied culture of Canada by immersing ourselves in the communities in which we lived.

It was without question one of the most important experiences of my life. I can say without doubt that I would not be the person I am today without having done it or having known my housemates.

Nearly 12 years later though, I am conflicted about my experiences in Katimavik because I almost didn’t qualify to participate and because I know many more disabled people were denied access to that opportunity.

I have sat quietly with my discomfort over the fact that I was privileged enough to be considered “not disabled enough” to not be deemed ineligible. I was able to do this largely because not long after I left the program, the Conservative government defunded it. First rolling back funding so that it was a ghost of what it had once been and then ultimately shutting it down altogether.

The Conservative government is no more though and the Liberal government led by Justin Trudeau (who was a staunch supporter of Katimavik in his pre-politics days) has reinstated the funding.

Katimavik was originally conceived of in the 1970s. It’s 2018 and I fear the discrimination that was built into the original program with remain in its rebirth.

This is significant not only for the injustice of denying disabled youths the chance at this kind of formative experience but because of the opportunities it leads to.

Prior to Katimavik, I was completely unemployable. I spent the first year after high school futily looking for a job to pay for university. I didn’t find one. I mostly spent the year playing housekeeper for my grandmother. She did pay me but was also clearly more interested in having company. So I did very little work as she constantly derailed my attempts to clean with conversation. I maybe worked 1 hour in every 5 spent at her house. I was only paid for what I worked. I made almost no money.

After Katimavik, with a resume that had been boosted by the volunteer work that I had put in at an elementary school, an employment centre, and a publicly run internet café (many people in the area didn’t have access to computers much less the internet) I found work (of the retail variety) relatively easily.

Katimavik gave me the skills and work history necessary to do that. My physically disabled, undiagnosed autistic self was otherwise just utterly unemployable. This is a reality for far too many disabled people.

One of the great perks of Katimavik is that if you get in, you are guaranteed work throughout the program. It’s just unfortunate that the program aggressively screens out disabled people. I almost didn’t make it in.

They successfully hid behind the fact that the houses were inaccessible as were many of the work placements. An argument that I suspect was helped by the fact that so much of the infrastructure for the program was conceived of and implemented well before the Charter of Rights and Freedoms was added to the constitution.

Will that argument still get made in 2018? When they have the chance to start from scratch?

Part of qualifying for Katimavik hinged on passing a medical inspection. You had to get a doctor to fill out a long and detailed form that was then reviewed by the program itself.

It had questions like:

Do you (the doctor) have any reason to believe this person would have difficulty participating in physical activity?

Does the patient have any disabling conditions? Please describe limitations.

Anyone who used a wheelchair was immediately screened out. My cerebral palsy threw them and they assumed that my doctor must be lying or misrepresenting my physical capabilities. So I had to answer clarifying questions like:

Can you walk? (apparently, by not expressly saying that I could, they assumed that I couldn’t)

Can you run?

Can you swim? (I can, but it seems irrelevant because the nondisabled participants weren’t asked to confirm this and at least one of my nondisabled housemates couldn’t)

These types of questions do two things. They show that people will always assume inability from disabled people if the ability isn’t clearly stated even if other questions directly asking about physical limitations are also answered in ways that indicate ability. It also forced me to confirm that “I wasn’t that kind of disabled”.

As it was, my autism diagnosis came after I had jumped through those hoops so had again had to prove that I could participate. This time by acquiring a letter from the diagnosing psychiatrist saying that I was safe to be around children. A concern that didn’t exist prediagnosis.

I went through all of those indignities and I can’t claim that I didn’t know other disabled people weren’t making the cut. I had read a news story (that I, unfortunately, can’t find anymore) about a wheelchair user who tried and failed to force the program into accepting him.

I knew, that the program excluded other disabled people. I knew that but I went anyway. I went anyway and I reaped the benefits of the experience both at work and in the relationships I created with the people I met.

I absolutely would not be who I am now if I hadn’t. I probably wouldn’t be here feeling discomfort at the benefits of being not disabled enough to exclude.

I am uncomfortable though and Katimavik is back so that discomfort matters. It matters because I know what I got out of the program. I know I wouldn’t have a Masters degree. I wouldn’t be a PhD student.

Disabled people need access to coming of age experiences. Not just the work experience. The lived experience of navigating cohabitation with too many strangers in too small of a house. The experiences of misunderstandings and fights and learning to create boundaries.

Katimavik has always been fundamentally about creating a quintessential Canadian experience and by actively excluding disabled people, it reinforces how not apart of Canada we are unless we fit a narrow standard of “able-bodied enough” and a willingness to leave other disabled people behind.

It’s 2018 and I hope the new Katimavik does better but honestly, I’m not holding my breath.

 

 

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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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I have Concerns about The March for Science

The presidency of Donald Trump has created a lot of social unrest. It has also resulted in significant protests. Most notably to date, The Women’s March on Washington which saw millions of people worldwide come out against Trump and his policies. The march was widely lauded but did garner significant criticism for issues of inclusion & intersectionality.

That is why it was so disappointing to discover that other movements, hoping to protest Trump or his policies were not paying attention. Trump

Trump, unsurprisingly took aim at science. He tried to stop scientific agencies from discussing scientific facts (that Trump disagrees with) on their social media. Which caused some accounts to go rogue and others to create alternate accounts that were separate from their official social media from which they share factual information.

Under this political climate, it is unsurprising that the scientific community decided to fight back. It is also unsurprising that after the success of the Women’s March that a March for Science is being proposed. Unfortunately, the organizers have not learned from the mistakes of the Women’s March.

The March for Science’s webpage does include a diversity statement. It reads,

Diversity
We will both have a diversity committee and a diverse steering committee that represents people of
many backgrounds and identities.Science is done by POC, women, immigrants, LGBTQ, indigenous people,
people of all beliefs and non-belief. We hope that this diversity is reflected in both the
leadership of the march and the march itself.

This statement leaves out disability. An oversight that disabled activists have been bringing to organizers’ attention since the page was published on Jan. 21. It took them five days to respond with this tweet.

Two days after that and they still haven’t even updated the text on their website as a placeholder while they work on a comprehensive statement on inclusion.

This is concerning because the March for Science has no transparency and this lack of transparency has me worried that the leaving out of disability may be just the beginning of inclusion issues.

It is, after all, easy to throw together a generic diversity statement. It is another thing entirely to follow through. Nowhere on the webpage, Twitter or Facebook is there a list of existing organizers or a system in place to ensure inclusion and diversity. When asked about any of this they point to a painfully insufficient Google Doc. There is no way to leave feedback.

People who ask questions are given the brush off with vague statements that answers are forthcoming.

Their twitter account has over 250,000 followers which speaks to widespread interest but there is very little evidence of follow through. They appear to be primarily running on popularity rather than concrete planning.

Basic things like a date and a visible organizing structure should have been in place before any social media went live.

Another major concern is the basic lack of a clear objective or message. The goal seems to simply be to “defend science” which is commendable, particularly when the President of the United States appears to be so averse to facts.

Officially their goal is,

The March for Science is a diverse, nonpartisan group that defends and celebrates

publicly funded and publicly accessible science

as a foundation of American freedom and prosperity.

Science  guides nearly every aspect of our lives and it is critical that political leaders and policymakers

support scientific research and incorporate science into their decision making.

Issues come up when the march is also billed as non-partison and other statements are made claiming that science apolitical. I don’t understand the first statement considering that this march is driven by a reaction to a very real political climate that is a response to government actions and statements.

The statements about science being apolitical, are just inaccurate and come from a very rose-tinted view of science as objective and free from bias. This is not true and the denial of a long history of scientific bias stands in direct opposition to the idea of inclusion seeing as disabled people,  women, immigrants, people of colour and the LGBTQI community have been on the violent receiving end of scientific bias for centuries.

For example Darwin’s interpretation of racial superiority in “The Descent of Man” or the Canadian, American (and yes Nazi) eugenic programs. Science has predominantly existed to serve and benefit nondisabled cis straight white men. That reality is not just ancient history it is a contemporary fact.

Science is not free from bias and is not some bastion of objectivity. Science is a product of the people who create it and we currently live in a world where the fear shouldn’t just be the silencing of scientists but accountability for the people performing it.

Failure to recognize the fallibility of science is exactly how harmful science happens.

Sharing memes and platitudes about the supposed inclusiveness of the sciences obscures the reality and I’ve seen far too much of that when there has been too little concrete movement towards actual inclusion.

I have questions for the organizers of the March for Science that I would genuinely like answers for.

Who are you?

When is the march going to be?

How can you be planning T-shirt sales when there is no date set yet and so little transparency around organizing?

How diverse is the current set of organizers?

What is being done to ensure meaningful consideration of diversity at the march?

Why is the march slated as apolitical? Particularly because this march is clearly a response to a particular political climate?

Why do you think science is apolitical?

How can you defend the idea of science as apolitical when historically it has been used to predominantly benefit white cis men and has been used to dehumanize anyone who wasn’t a white cis man?

 

I also have some suggestions.

Get your organizational ducks in a row.

Set up a system of accountability so that your supporters know who you are.

Set a date so that planning for satellite marches can start to take place.

Create an actual document stating your goals and concerns. Something that is more realistic than “science is apolitical, for everyone and must be protected”

Talk about the actual dangers to scientific research we face and be clear who is threatening that research.

Set up a diversity team with diverse activists from within STEM fields

Stop celebrating how many twitter followers you have and actually start delivering on answers and planning.

Be more transparent about the planning process so that we aren’t stuck with vague “we’re working on it” answers.

Tell us what you are working on and give a timeline on when we can expect things to be done.

Learn from the mistakes of the Women’s March and help move us forward not backwards.

 

 

Update:

The March for Science has updated it’s diversity statement

science-march-diversity-updated

The text now reads

In the past days, scientists have voiced concern over many issues – gag orders for government science agencies, funding freezes, and reversing science based policies. We recognize that these changes will differently and disproportionately affect minority scientists, science advocates, and the global communities impacted by these changes in American policies. Addressing these issues is imperative in understanding how recent developments will affect all people – not simply the most privileged among us. We take seriously your concerns that for this march to be meaningful, we must centralize diversity of the march’s organizers at all levels of planning. Diversity must also be reflected in the march itself —both through the mission statement and those who participate. We hear you, and thank you for your criticism. At the March for Science, we are committed to centralizing, highlighting, standing in solidarity with, and acting as accomplices with black, Latinx, Asian and Pacific Islander, indigenous, non-Christian, women, people with disabilities, poor, gay, lesbian, bisexual, queer, trans, non-binary, agender, and intersex scientists and science advocates. We must work to make science available to everyone and encouraging individuals of all backgrounds to pursue science careers, especially in advanced degrees and positions. A diverse group of scientists produces increasingly diverse research, which broadens, strengthens, and enriches scientific inquiry, and therefore, our understanding of the world.

There is still no movement on a comprehensive mission statement and the website still has references to science being apolitical, which directly contradicts the new diversity statement. I took it upon myself to fix it for them

science-is-political

Image description: An altered screenshot from The March for Science Webpage from their FAQ section. The Question is “Isn’t science apolitical?” The original answer of “Yes. The march is non-partisan, but it is absolutely intended to have an impact on policy makers.” is crossed out with the following text added at the bottom,

No, of course it isn’t. If it was there would be no need for this march in the first place. Science has often been politicized or practiced for biased reasons. That being said this is not a partisan even. This is to champion the use of solid peer reviewed research by government. If you support that, this event is for you.

Here’s hoping that The March for Science works on the other issues I discussed in this post, or I’m genuinely concerned that the March for Science will never actually happen.

When the Real Life Murder of a Disabled Child Was Used as a Moral Dilemma in a University Class

Being disabled in academia can be difficult. Not just in terms of access to physical and academic supports but also in terms of the disability is presented in academic discourse. The social environment of universities can be toxic for disabled students and academics. So much so that some people feel that they have to leave. It is bad enough that we have to navigate and fight for accommodations. We shouldn’t be faced with bigotry in the classroom.

It is not entirely surprising that issues of disability are coming up in academia, I mean disabled people have existed as song as the rest of humanity. What is unfortunate is how disability is framed when it does come up and how poor representations are not questioned or contextualized.

Writer s.e smith (name left uncapitalized in line with author’s preference) wrote an article about why disabled people leave academia. In it ou profiles a woman who fought through the bureaucratic quagmire necessary for accommodations. She railed against but ultimately put up with issues in physical accessibility. It was not until she faced a professor who refused to contextualize a discussion of how disability is used as a metaphor for evil throughout literature, that she finally had enough.

Now it cannot be argued that disability has been used as a metaphor for evil throughout literature and media generally, and so it is a valid topic of discussion. It should however be questioned and contextualized in terms of the social position of disabled people. Disabled people are real and are not a metaphorical construct and any time a group of people are used to symbolize something, particularly something negative, people should absolutely ask, why? Failure to do that gives a historical and continuing trend of marginalizing disabled people legitimacy.

I have found myself in a classroom environment where negative feelings about disability were not only discussed but tacitly encouraged. It was during my undergrad and I was taking Political Science 100. At the beginning of the semester as I was perusing the syllabus and noticed the the Latimer trial was going to be discussed, I got worried. I read the associated reading and my worse fears were confirmed. The class was going to discuss the Latimer trial. A case involving the murder of a disabled child at the hands of her father, with only a biased news article as context.

First off I’ll start with the history of the Latimer case.

I was still a young child when Tracy Latimer was killed but the news coverage was so overwhelming that I couldn’t help but be aware of it.

In October of 1993, Robert Latimer (a Saskatchewan farmer) killed his twelve year old daughter Tracy, I was aware of the situation as soon as it hit the news. At the time I was to young to understand the nuances of the case but I was aware that Robert Latimer had killed Tracy because he claimed she suffered greatly from her cerebral palsy.

This concept troubled me as I saw a lot of similarities between myself and Tracy. I too lived in Saskatchewan and I also had cerebral palsy. I was aware of the basic differences as well. I knew Tracy had used a wheelchair and couldn’t speak but for me the connections were stronger than our differences.

It was the initial crime that unsettled me at first but as the trial progressed and the subsequent reporting on it through the years, the most disturbing thing about the case sadly is not that a child was murdered by her father but that he has gained almost folk hero status in Canada for his actions. People readily believed and continue to believe his assertion that he killed Tracy because he wanted to end her suffering. This narrative is so widely believed that though he was convicted of murder, people still defend his actions and Latimer himself has firmly positioned himself within Canada’s assisted suicide debate, which though his actions would still be illegal under our recently relaxed restrictions on assisted suicide, his presence in the debate gives him legitimacy.

When the Latimer trial is covered in the news and it still is even 22 years later, Tracy is almost always reduced to a non-being who was just a thing that was alive and suffering. Her father is almost always framed as a loving father who killed his daughter out of necessity to relieve her suffering.

That narrative did not ultimately sway the court (after a mistrial, retrial and his sentence being debated all the way to the supreme court). He was convicted of murder. However, in the court of public opinion, he is very much the victim of a miscarriage of justice.

This narrative however does Tracy a disservice, it entirely dehumanizes her and if you look past the lazy journalism it isn’t all that difficult to find holes.

Things that don’t generally enter the public discourse

  • Laura Latimer’s (Tracy’s mother) own records refute the idea that Tracy had no quality of life. She described how Tracy was socially included in the family and clearly enjoyed this social engagement.
  • Robert Latimer refused to allow Tracy to have a feeding tube despite the fact that Tracy had difficulty eating, was malnourished. and a feeding tube might have allowed for more effective pain management.
  • Robert Latimer had a phobia of medical intervention. It is not hard to see how this fear might have influenced his perception of his daughter’s life.*

I was aware of the more contextualized reality of the Latimer case and was more than a little concerned about how the the class would approach the case or why it was being presented at all. I contacted the professor with my concerns and provided sources that gave the case more context. She rejected my concerns and refused to provide the class with more context. She claimed that nothing negative would come of the limited view of the case being presented.

In reality on the day that the Latimer case was presented in class, I was surrounded by ableist sentiments that deviated from the specific Latimer case. Comments were general “well of course people like that would want to die” “If I was like that I would want to die”

I tried to give context in discussion and explain that disabled people do not as a group universally want to die and that many of us are perfectly happy with our lives. Even disabled people with conditions considered severe. I was roundly ignored and accused of having an unhealthy bias.

Turns out the professor not only believes the miscarriage of justice narrative of the Latimer trial but intended it to show that just because the outcome of the trial was in line with the law that it was not just.

To this day I regret not filing an official complaint over the class. Not because she holds a differing opinion from me but because she created an entirely toxic and unsafe environment in her classroom.

I also know that she is not alone in using the Latimer trial in this way. I have at least one other disabled friend who found herself in a similar classroom experience. The discussion just as bad. In her case however when she brought her concerns to the professor, he apologized and tried to contextualize the conversation in the next class.

The willingness to frame the disabled experience through the Latimer case is problematic outside of the harm it does to individual disabled people who happen to be in those classes because it happens when we aren’t there to try and defend ourselves as well.

This came into sharp focus for me one day on Facebook when I was trying to explain why many disabled people have issues with bioethicist Peter Singer (who has argued that disabled children should be euthenized or that disabled people should be denied health care). An acquaintance mentioned the Latimer case as a defense of why killing disabled people without their consent might in certain circumstances be acceptable. He presented it as a given, that it was right to kill Tracy. That mentioning the case was enough of an argument in itself. When I refused to accept such an unnuanced argument he said “well we studied it in one of my Philosophy classes” and my heart sank. I then disabused him of his narrow understanding of the case. He was then forced to defend nonconsensual euthanasia through hypotheticals that had nothing to do with disability “well what if you are in a war and your friend has been gut shot, is going to die and there is no medical treatment available?” kind of scenarios. Things that deviated so far from the original discussion as to be irrelevant to it.

The social atmosphere that universities build for disabled people is just as if not more important than the physical accessibility of the academic space. The key thing here is that this is true whether disabled people are present or not. Considerations of how disabled people are presented in course content and discussion should be considered without a disabled person actually having to be present because eventually those people in those classes will likely be faced with an actual disabled person. Building an inclusive space doesn’t just mean when the marginalized group is present. It means that when they do show up, people won’t have to fight to not be excluded socially or physically.

This does not mean ignoring things like the history of disability in literature or the Latimer trial. Disabled people deserve to have their history and social context be a part of academic discourse. We however don’t deserve to be treated to one sided arguments that devalue our lives and experiences.

*reference: Enns, R. (1999). A voice unheard: The Latimer case and people with disabilities. Halifax, N.S.: Fernwood Pub

 

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