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

Labels

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Teach kids how to talk about disability

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

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

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

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

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

 

 

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

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

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

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

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

autism speaks frame facebook

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

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

10940999_769959393059095_6633527766282533542_n

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

AutFest

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

 

Dear Autism Society and Organizers of Aut Fest

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

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

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

So, what then are you honouring Affleck for?

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

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

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

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

Sincerely,

Kim Sauder

PS: Further reading on this

How ‘The Accountant’ Victimizes The Autistic Community

Autism Society Celebrates … Ben Affleck?

From Amy Sequenzia

 

 

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I have Cerebral Palsy and I Tried the Cerebral Palsy Foundation’s New Fitness App

March is as I’ve been repeatedly made aware Cerebral Palsy Awareness Month–please take a moment to pause and simply be aware of my existence–as a result, there have been awareness campaigns (usually in the form of patronizing memes) that pop up in my social media feeds.

There has been one that I was particularly interested in, though. The Cerebral Palsy Foundation announced early in the month that they would be launching the CPF Challenge, a fitness app which would include modified exercises for various mobility needs.

I have written before about my own difficulties in finding accessible fitness options and about how disabled people are used as examples of the things that will happen to nondisabled people if they don’t maintain healthy lifestyles. So I was cautiously excited about this app.

Video Description: The video features both a personal trainer and two individuals with cerebral palsy demonstrating various interval style exercises. There is text that advertizes the CPF Challenge and it’s daily 7 minute workouts.

I was only cautiously optimistic because the app was not simply something to fill a need for more accessible fitness options but also a fundraising exercise for the Cerebral Palsy Foundation.

I have been sceptical of the CPF ever since it launched it’s deeply patronizing and seriously ill-advised “Just Say Hi” campaign. A campaign that they still advertise on their website.

The CPF Challenge is supposed to be undertaken over 21 days with participants joining online teams to compete to raise the most money while doing the 7 minute workout every day.

Beyond the fact that my feelings toward the CPF are ambiguous at best and I’m not particularly bothered about raising money for them, the three week timeframe has me concerned.

This is clearly a fundraising initiative for them so I worry about the long-term usability of the app. While I hope that it will still be possible to access workouts after the campaign has run its course, the CPF has not confirmed this. This is also the sort of thing that could be useful long term and benefit from ongoing updates but it is also unclear whether the CPF are going to continue investing in it as a tool to help people stay fit rather than a simple fundraising tool.

I downloaded the app yesterday as the functionality only started on the 25th in keeping with its function as a fundraising tool. I immediately hit a problem, despite the fact that it was the 25th of March yesterday and it was also the day I downloaded the app, the app was out of date and was convinced that it was still the 24th and would not work.

I was so confused by this that I didn’t trust my own knowledge of the date or the calendar on my computer. I actually googled the date just to confirm that I was, in fact correct. After receiving confirmation I checked the app store for an update which there was. My app was finally ready to use.

It is clear just by opening the app that it’s primary function is as a fundraising tool and not a fitness app. This is the opening screen.

2017-03-26 12.55.06

Image description: Home screen of the CPF challenge app. It has blue text on a white background and is separated into three sections. The top is for personal workouts completed while the second is for workouts completed by the user’s fundraising team. Both sections include a workouts completed status bar and a fundraising status bar. The bottom third is topped by a large Fundraise Now button which is followed by options to look at achievements and a challenge calendar. The very bottom has a blue button with white text that reads “begin today’s workout”

In order to make the workout accessible, users have to go to the workout library and unselect the options that are inaccessible.

2017-03-26 12.55.34

Image description: CPF Challenge exercise library that lists various interval exercises and a toggle on the right to indicate whether the user can do that particular action or not. On the bottom is a blue button with white text that reads “review all exercises”

In case you aren’t familiar with what the exercise name means you can choose to review all of the exercises which leads you to a silent video run through of them all with buttons that let you say yes or no to each. There is no audio description of the exercises in the exercise library.

While the app simply categorizes the exercises as a yes or no, I took a slightly different approach in which I classified them as

Yes, I can do that

No, I can’t do that

I think I can do some approximation of that without dying (We’ll see if I was right about that or not)

One of the first things that I noticed is that there are significantly more standard exercise options than ones that have been modified to consider different mobilities. Only 14 out of 57 exercise options are classed as “modified”. While I was certainly able to select yes or a tentative maybe to options from both the standard and modified offerings it was disheartening to see how few were specifically geared toward disabled bodies. And while it is entirely possible that other disabled users will like me find accessible options from within the standard list, it would have been nice to see more modified options. It’s also not clear whether CPF expects there to be crossover because all of the standard exercises are demonstrated by the nondisabled coach. Neither of the disabled demonstrators show anything but the modified ones.

It is, therefore, unclear how much actual functionality CPF expects disabled users to get from the app because not even all of the modified options were accessible to me and I expect that I won’t be alone in that. So disabled users are by design offered fewer options which is disheartening.

It is day two of the challenge and I have now done the 7 minute workout twice and I have some early observations (I might do a follow-up after the full 21 days let me know in the comments if you’re interested in that).

The workouts are 7 minutes which is broken down into 12 different exercises.

The workout is surprisingly effective for all that it is only 7 minutes. My thighs and calves are still in pain and I was even reticent to do today’s set because I was genuinely stiff from yesterday (yes, I know I’m really out of shape). Hopefully, I build up a resistance soon or I’m going to have to quit from the pain.

One thing I really wish was different and makes the workout inaccessible is that there is too little time between exercises. I am able to transition from a standing action to one that requires me to lay on the floor (and vice versa) but I can’t do it quickly. Particularly today because on top of my general lack of coordination I was stiff and sore from yesterday’s workout. I actually sat out of an exercise because I didn’t think I would be able to get down on the floor, do the action and get back up in the time allotted. The workout would be improved by doubling or even tripling the interim time (or by offering it as an option).

So far both workouts were identical but I expect that to change in the coming days as I did set more than 12 activities as things I was able to do.

I am unfortunately not optimistic as to how much functionality physically disabled users will get out of the app. I get the feeling that the CPF challenge is more something to be done on behalf of people with cerebral palsy than by people with it. The modified options feel more like a publicity stunt than something functional in its current form.

The app concept does have potential if they decide to continue investing time in the app by adding more modified activities, having the workout time lengthened to consider slower less coordinated bodies and showed the disabled presenters doing more of the demonstrations, showing where even the standard activities might be accessible.

I certainly hope that the Cerebral Palsy Foundation see this as a genuine opportunity to create something that could be useful to disabled people and fills a real need for more affordable and accessible fitness options. I hope that this isn’t just a publicity and fundraising campaign.

If you liked this post and want to support my continued writing please consider buying me a metaphorical coffee (or two or more). Donations help me keep this blog going and support my ongoing efforts to obtain a PhD. Or if you just want to support an actual person  with cerebral palsy in Cerebral Palsy Awareness Month.

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Return of the Ableist Narrative: Why do We Keep Having to Demand Food Accessibility

A little over a year ago a tweet went viral.

Image Description: tweet with a picture of peeled oranges in plastic containers on a grocery store (whole foods) shelf. Tweet reads “If only nature could find a way to cover these oranges so we didn’t need to waste so much plastic on them”

This tweet had everything it needed to go viral. It featured a picture of a product that was perceived to have no real use and to be extremely wasteful. It was paired with catchy sarcastic commentary. It’s no wonder that not only did the tweet go viral. It sparked many articles condemning the environmental impact of plastic and what was perceived as a particularly egregious example of unnecessary wastefulness.

It was presented as a final step to far in consumerism and laziness.

The thing is as many disabled people pointed out at the time, prepared foods increase accessibility. Peeled oranges and other prepped foods give disabled people access to fresh food that they might otherwise simply not be able to have.

I wrote a blog post from that perspective at the time. It is to date the most viewed thing I have ever written.

The result of these conflicting viewpoints was a particularly horrifying debate that pitted environmental activists against disability rights activists. Particular highlights included: the suggestion that disabled people simply did not deserve access to easily accessible fresh food.

The suggestion that disabled people simply did not deserve access to easily accessible fresh food.

“Well you didn’t have it before now so you can keep living without it”

This, of course, ignores the reality of systemic oppression and actively promotes the idea that disabled people should not fight for or expect improvements to access and inclusion.

It also ignores how disabled people are held up as bogeymen in discourses around health particularly around discussions of dieting and exercise. People are told to eat well and exercise to avoid the spectre of disability but disabled people are routinely denied access to healthy food and exercise and then shamed for our perceived unhealthiness.

Paternalistic suggestions that instead of having prepared produce readily stocked that disabled people should simply ask staff the prep food for them.

Several well-intentioned grocery store employees expressed that they would always be happy to assist disabled patrons with preparing food and then extended this intention universally to all of their co-workers.

This ignores the fact that employees are often busy and may not be available. It also ignores the gatekeeping that disabled people routinely face when asking for accommodation. It neglects to consider that disabled people who ask for help are often met with scepticism, particularly if they are not disabled in a way that the nondisabled person understands. These scenarios often lead to inappropriate probing questions that require disabled people to prove that they are “disabled enough” to require the accommodation that they are requesting. It is not uncommon for these untrained gatekeepers to arbitrarily deny needed assistance because a disabled person doesn’t fit their stereotyped expectations.

A steady stream of people who simply did not believe disabled people when they described their difficulties in preparing produce (particularly peeling oranges), so they made suggestions that they thought we hadn’t previously considered.

This one tended to get individualized and the question “have you tried [insert completely inaccessible alternative way to peel an orange]”

This was such a popular  response to disabled people that in response to my original blog post one made this YouTube video

Not only is this a completely inaccurate interpretation of my body and how it works (or doesn’t as the case may be) making the video just horribly offensive, it also ignores the fact that I’m just one disabled person. I have just one kind of disabled body.

Even if he had managed to find a workaround for me. I was far from the only person saying that they wanted access to prepared produce. Their needs and limitations differ from my own.

This tactic is a way to attempt to silence individuals without acknowledging or dealing with the reality that those individuals are part of a larger community whose needs cannot be met with a one size fits all solution.

The original backlash around the tweet and the discussion that it created lasted a few weeks but unfortunately that discussion did not translate into widespread consideration around food accessibility. This is all too clear because we keep having to have this conversation over and over again.

Back in January Gizmodo published an article decrying the evils of selling peeled and halved avocados. It contained all the shaming language around wastefulness. A criticism that fell flat after a brief look at the author’s twitter feed which included a since deleted tweet celebrating the existence of a disposable plastic fork that came with a removable toothpick. His Gizmodo article was less an expression of real concern for the environment and more a shaming of a product that he had no use for. He has no problem with packaged food if it is something he doesn’t consider to be too lazy as this tweet about Werther’s Caramel Popcorn attests.

More recent food shaming of prepped foods has come with less of an environmental argument and seem to be more expressions of “I a nondisabled person cannot personally see a use for this”. The problem is that even this is effective. It utilizes coded language of laziness that is far too often really just a dog-whistle reference to people who are poor or disabled.

One heartening aspect of the resurgence of these food shaming narratives is that more often than not I become aware of them because someone else is using my old post about oranges to actively rebut it. This speaks to how far narratives challenging ableist narratives can go but also highlights how easy those narratives are to find and how little effort some people put in to considering perspectives that differ from their own. Part of this is just a desire for easy shock value clickbait virality. The author of the Gizmodo article never responded to disabled activists attempts to draw his attention to the accessibility perspective.

It is this desire for virality that influenced the most recent incarnation of this narrative. This is particularly clear because it is just someone who has directly plagiarized the original tweet about peeled oranges.

It is exactly the same as the original tweet. The same image and text except that it is shared by a different user.

The fact that this uncritical rebirth of this old narrative is frustrating enough but it is made more frustrating by the fact that it is just someone trying to capitalize on the old popularity of the original tweet. This person did not see those oranges in store. They can’t have. The original backlash resulted in Whole Foods removing the product from shelves. It’s not a genuine or original reaction.

It’s capitalizing on anger over a product that is no longer available so it doesn’t even make a statement about the continued wastefulness of plastic. It’s just an ableist narrative that won’t die and relies on the continued ignoring of disabled people and our needs and serves as a reminder of what options can be taken away from us when people uncritically decide that things that aren’t useful to them shouldn’t be available to anyone.

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

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We Need Diverse Authors: A Review of Dancing With Ghosts

dancing-with-ghosts

Image description: Book cover for the novel Dancing with Ghosts by Emily Gillespie. The bottom two-thirds of the cover is black with the title and author’s name in white text. The top features a galaxy background with pinks, purples and blue speckled with stars. On the left side, three ballet dancers are captured in silhouette.

I have written before on the dangerous and problematic pitfalls of people writing about marginalized experiences that they do not experience. I am a huge supporter of not only diversity in books but more importantly diversity of people writing those books. So I was pleased to hear that my friend Emily Gillespie had written a book and that it was going to be published.

Emily has lived experience with mental health* and wrote a novel that deals directly with a character who is experiencing what is possibly depression and anxiety.

The synopsis from Goodreads is,

Freshman year of university was supposed to mean freedom.

It was supposed to be her escape from parents who didn’t understand her – who turned Patricia away every time she reached out for help. New city, new school, new friends, fresh start – wasn’t that how it’s supposed to work?

Instead, when Patricia moves from her small, isolating hometown to the bustling, sprawling cityscape of Toronto, she finds herself more alone than ever. When she meets Derek – an intriguing yet mysterious classmate – she’s instantly drawn in by his worldly knowledge and easy charm.

For a while, things between them are perfect. For a while, it’s thrilling being invited into a world unlike anything Patricia’s experienced before.

But this isn’t a love story and not everyone is what they seem.

Dancing With Ghosts is technically classed as adult fiction, though could be considered a young adult novel. The protagonist, Patricia is eighteen & nineteen throughout the novel and though the book does deal very frankly with issues of mental health, sex, and various kinds of abuse (sexual, emotional, medical); the story is very much something that can and does happen to young people.

The book is a first-person narrative written in semi-journal style (by which I mean the narrator will occasionally address the reader directly). As a result of the casual narrative style, the protagonist occasionally breaks off into tangents. This was a bit jarring at first but as you get to know the character it becomes natural and I eventually stopped being aware of it.

I really appreciated the way Emily approached mental health in the novel, from how it isn’t always strictly labelled as a specific diagnosis but the impact is still real. This indefinability is not only realistic it also really highlights the issues that Patricia has in trying to set up official support systems when she doesn’t fit neatly into a box. The book also challenges that smug Canadian lie that seems to crop up anytime that a Canadian is trying to prove their moral superiority (usually to an Americal) “Yeah? Well, I’m going to have my feeling checked for free”.

Emily effectively weaves a story about someone who tries and fails to seek timely and meaningful healthcare and the emotional fallout of being failed by a system that horribly ill-equipped to deal with the volume and reality of the needs it should be meeting.

Dancing With Ghosts is not the kind of book you read all in one sitting. Not because it isn’t good or engaging. It is both but it deals with issues of abuse so head on and frankly that sometimes I had to take some time to sit with what I had read before I could continue.

This is the benefit of a writer who has experience of the thing they are writing about. Eve when they write fiction, it feels more real. I feel the shared frustration of a medical system that frequently underserves or fails disabled people. I struggled with Patricia’s frank attempts to make sense of how the various factors in her life contributed to what happened. I searched for those answers with her.

This is why we need more voices from the margins. Not people speaking for the margins.

 

 

Dancing With Ghosts is currently available for purchase in ebook form through Kobo.

There is currently no official print release date (I will update when one is available) but print copies will be available on Amazon and at the York University Bookstore in Toronto.

Dancing With Ghosts is being published through Leaping Lions Books a small independent publisher run by York University’s fourth-year Professional Writing program.

The official book launch will be on March 9th. If you are in Toronto and are interesting in attending you can find information here.

 

 

 

*Her current preferred label

If You’re Disabled in an M. Night Shyamalan Film, You are either a Villain or a Supercrip (Mostly a Villain Though)

I long for the days when M. Night Shyamalan was still mostly associated with his flops. Only making movies because of a vain hope that he would rediscover his Sixth Sense heydey. I look back yearningly at that moment I was sitting in a movie theatre and the collective groan of disappointment that the audience emitted at the end of the trailer for Devil (2010) because all hope that it might be good had been spoiled when it was revealed that the story was created by M. Night Shyamalan (though he did not actually direct or write the screenplay)

Shyamalan has recently recaptured some of his earlier success with his most recent film Split (2016). The film centres on a villain, Kevin (played by James McAvoy) who has Dissociative Identity Disorder and 23 distinct personalities (with a supernatural 24th). He kidnaps and terrorizes three girls. The film epitomizes the trope of to be mad is to be bad. I am not going to go into a long breakdown of how awful this is. Many others have already done so and likely better than I could have.

kevin-split

Image description: Still from the film Split. The character Kevin (played by James McAvoy) walks dow an empty street at night. He is bald with glasses and is wearing black pants and a jacket. His hands are in his pockets (image source)

I am instead going to talk about how Split’s Kevin fits into a pattern of stereotyped disabled characters in M. Night Shyamalan movies. Characters who are usually bad but who occasionally also fill the supercrip role.

Split is actually (as it is revealed in the end) a sort of sequel to Shyamalan’s 2000 film Unbreakable. Unbreakable is another film that relies on a disabled villain. Elijah Price AKA Mr. Glass (Samuel L. Jackson) has Osteogenesis Imperfecta, a condition that causes brittle bones. Price is inspired to villainy by comic books (Isn’t Shyamalan Meta he creates a superhero universe where the villains are inspired by comic books *sigh*). He makes it very clear that his disability is a catalyst for his villainy. He reasons that if he is so fragile then there must be someone is as impervious to injury as Price is prone to it (because logic I guess). He goes around causing disasters with mass casualties until he finds his opposite. He discovers David Dunn (Bruce Willis) after Dunn is the sole survivor of a train wreck.

elijah-price-unbreakable

Image description: Elijah Price (played by Samuel L. Jackson) sits in a wheelchair in the aisle of a comic book store. He is holding up a comic in his right hand. He is wearing a grey sweater over a black turtleneck (image source).

Disability is so linked to villainy in Unbreakable that the hero is literally impervious to injury. He can never become disabled.

By linking Split and Unbreakable, Shyamalan has essentially created a superhero universe in which disability is synonymous with evil.

Shyamalan’s use of disability is not limited to these two films. It is also a theme in his biggest success The Sixth Sense (1999). The initial meeting between Cole Sear (Haley Joel Osment) and Dr. Malcolm Crowe (Bruce Willis) is set up as Crowe being Cole’s psychiatrist. But fear, not Haley Joel Osment is not another Shyamalan supervillain. He is not mad. He can actually really see ghosts. The film does not, however, avoid the insinuation that mad is bad. In the scene where Cole finds the evidence that a child–who had presumably died of some unknown prolonged illness–had been murdered by her mother through long-term poisoning. The film subtly suggests that the mother has Munchausen’s by Proxy and was carrying out the prolonged poisoning not for the direct goal of killing the girl but rather for the attention having a sick child provided her.

Funeral guests can be heard musing about how long the girl had been sick, how many specialists were consulted to find the cause of the mystery illness and sadly explaining that now that the older child was dead that the younger sister was also begun to exhibit similar symptoms.

So while Cole Sear is not mad. Madness in the Sixth Sense is still dangerous.

In the film The Village (2004), Shyamalan manages to include both someone who is dangerously disabled and a supercrip.

alice-walker-the-village

Image description: Still from the film The Village. Alice Walker (played by Bryce Dallas Howard) stands in a doorway in a white nightdress. She stares blankly in front of her while reaching her right hand imploringly through the door (image source).

Ivy Walker (Bryce Dallas Howard) is blind. Her blindness isn’t particularly extraordinary until she is forced to take on the supercrip role after the intellectually disabled and sexually frustrated Noah Percy (Adrien Brody) stabs her beloved in a fit of jealousy.

Ivy’s blindness is a bizarre plot device because I never could fully understand why she was the only person who could leave the village in search of medical attention. It appears to mainly be a plot device to add tension to jump scares and an odd scene where she finds a miraculously well-tended gravel path in the middle of a forest. Allowing for a moment of “Oh look at how the blind girl recognizes the change in terrain without sight”.

Noah Percy is a standard movie caricature of intellectual disability. He his presented as a perpetual child. His violence is a direct result of sexual frustration which reinforces the idea that the sexuality of disabled men is dangerous.

There may be other examples of disability stereotypes in Shyamalan’s work but I admit that I have not seen all of his films. I can only hope that Split was an anomaly and that Shyamalan returns to his standard of flops because unfortunately as history has taught us failure does not stop him and he is unlikely to learn and stop using dangerous disability narratives. They are far too ingrained in his work.

 

 

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I was inspired to write this piece by David Perry who wanted a proper write up of a Twitter rant I wrote earlier in the day.