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.

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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

When Social Justice Media “Allies” Get it Wrong

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

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

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

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

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

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

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

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

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

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

This answer is dismissive bullshit.

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

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

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

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

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

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

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

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

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

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

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

dylan-marron-excuses

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Update:

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

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

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

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

The text in Marron’s response reads

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

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

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

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

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

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

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

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

Disability is Not the Bogeyman, Stop Using it as a Threat

About a month ago this video of Cosmologist Stephen Hawking was released onto the internet.

The video is not a lecture on physics as on might expect from someone who is perhaps the most famous scientist alive today. Instead, it is a video decrying the horrors of the “obesity epidemic”.

Vague statements are made about the dangers of being overweight or obese. I’m not going get into the science of health and weight. It’s complicated and contentious. I’m an academic in the humanities in no small part because of my total lack of aptitude for science.

Instead, I am going to look at the choice to use Stephen Hawking as the spokesperson for this message and some of the claims he makes in the video.

Stephen Hawking is widely considered to be one of the most intelligent people on the planet. This reputation tends to give him a great deal of influence. This is a problem. I’m not saying he isn’t extremely smart but a high level of intelligence does not translate into expertise in every subject. Stephen Hawking is not a medical doctor. His presence in the video serves two purposes.

  1. Using this veneer of expertise to lend credibility to the message in the video.
  2. Using the image of his disabled body as both metaphor and threat.

In the context of the claims of this video Stephen Hawking does not, in fact, know what he’s talking about. Obesity is framed as primarily an issue of laziness. A problem that could be easily fixed if people only had the strength of will to exercise and eat better.

The reality is far more complicated. Access to healthy food and exercise are not necessarily easily attainable.

In order to eat healthy food, you need to be able to both have access to it and be able to afford it. This is a major barrier for many people living in poverty.

Not being able either access or afford healthy food is not a=actually evidence of laziness.

Similarly, people need to have access to safe and effective exercise. As a friend of mine pointed out on Twitter,

I hate that no one will notice that he’s never lived somewhere that’s too dangerous to let ur kids play outside (link)

It’s not always as simple as just getting out and walking.

Then there’s the issue of time, depending on issues like work schedules, parenting, and housekeeping. Finding time to actually exercise can be difficult for many and none of the reasons come down to laziness.

These issues are additionally complicated if, like Hawking, you happen to be disabled. Access to healthy food isn’t just an issue of cost and availability. There is also the issue of physical accessibility of the food.

Access to exercise can be even more limited.

In the video Hawking says “And for what it’s worth, how being sedentary has become a major health problem, is beyond my understanding.”

Some possible answers are increased mechanization requiring less human involvement, more work that is heavily based around computers, etc. None of these things are inherently caused by laziness but rather the adoption of technology without considering and planning for the consequences of a widespread shift to more sedentary work.

Add that to issues of poverty and you have the makings of a widespread socially constructed and maintained problem where people don’t have access to healthy lifestyle options.

It’s an issue that won’t be fixed by labeling the issue one of laziness and trying to shame people who very well be unable to change their circumstances.

None of these concepts are I expect beyond Stephen Hawkings ability to grasp but then he’s a cosmologist and not a social scientist.

Then there is the issue of using Hawking in a video decrying a sedentary lifestyle at all. He is after all paralyzed from ALS. The video uses this and it horrifies me that Hawking let them do it.

He is shown immobile in his wheelchair opining about the laziness of others. The unspoken message is clear “how dare you lazy people choose to be sedentary, I don’t even have the choice”.

He’s used as an odd and ultimately false morality tale. Even if access to healthy food and exercise weren’t more complicated than the video lets on, ALS is a genetic condition which is not caused by diet or lack of exercise.

Yet, people are supposed to look at him and see a horrifying alternative life. They’re supposed to decide not to waste the opportunity to move because some people can’t.

This message entirely relies on the widespread adoption of the idea that a life with disability is one that is not worth living. That is a big problem that extends beyond Hawking and his personal views on his quality of life.

Stephen Hawking in this video is not just speaking for himself, he is exploiting stereotypes about the disabled experience and presenting them with all the power of his influence and reputation.

Disabled people have been thrown under the bus to promote exercise before. It often positions the idea of disability as a threat. The thing that will happen to you if you don’t exercise. Things like this position disabled people as outside the human experience because it both dehumanizes us by turning us into the monster that will destroy you because you didn’t eat your vegetables or go for that run.

As a result of being artificially positioned as the outsider, it both ignores the unique difficulties disabled people face while trying to access exercise. It also frames disabled lives as ones that are not worth living.

While that may be the belief of some disabled people, it is not the opinion of all of us (not by a long shot). The problem is that nondisabled people don’t see or hear that often enough. Getting that message from Stephen Hawking gives it more weight than it deserves.

Exercise and eating healthy is good for people. Now if only people with as much influence as Stephen Hawking could better understand the big picture of the social causes of why people don’t then maybe we could move away from the obesity shaming and blaming rhetoric which will I assure you, not fix the problems of unhealthy diet and lack of exercise.

I also wish people would stop using disability as a threat or misplaced morality tale to advertise healthy lifestyles. Disabled people deserve to be treated better than that and I for one would actually like to be considered as part of humanity when they actually start coming up with real solutions to the lack of access to healthy food and exercise. An inclusion that is unlikely if I and other disabled people are positioned not as members of the community who face issues of access to healthy lifestyles choices but as the bogeymen representing the perils of noncompliance.

 

 

The Real Problem with “Drive-By Lawsuits”

On Dec. 4 the show 60 Minutes featured a segment on “Drive-By Lawsuits” hosted by Anderson Cooper. A drive-by lawsuit is a lawsuit filed by a disabled person based on an ADA (or other accessibility law depending on country of origin) violation. These lawsuits are framed as a nuisance as they are sometimes filed by people or law firms who do this regularly.

There are a number of problems with the segment.

It utilizes stigmatizing footage of disabled people

The segment utilizes background footage of Ingrid Tischer who has this to say about seeing herself in this context,

You know what’s awesome? Seeing yourself — excuse me, parts of yourself, the non-mouthy parts — on The TeeVee showing how disability access in built environments are achievable and cool in a segment where the talking parts of other people — excuse me, men people — explain the horror of running a business that doesn’t break the law or limit their customer base. Courtesy 60 FoxNews Minutes

The footage does not include her head. She is completely depersonalized.

It doesn’t delve into why there are so many ADA violations

There is no active monitoring of ADA compliance. Dealing with infractions of laws governing accessibility (in the US & many other countries) is often primarily done through complaints. So while the law may say what needs to be done, unless someone actually complains there is little incentive to actively comply. There is no independent body doing regular inspections and meting out fines for noncompliance.

The segment doesn’t question why so many of the people hit with these so called nonsense lawsuits are ignorant of the law but it shows that ignorance as reasonable. No one questions why business owners are so unaware of their responsibilities.

It suggests that compliance is only necessary if people are complaining

One of the questions that every business owner is asked is whether anyone has either actually used an accommodation or asked for it prior to the lawsuit. The answer is invariably “no”.

This is framed to seem as though the accommodation has been up till now unnecessary and that the request was ultimately frivolous. Ingrid Tischer provides insight into why disabled people don’t make requests and don’t forcefully complain if an accommodation is unavailable.

You know why I never used to ask for a pool lift and maybe never even sought one out? (Despite excellent legal reasoning that ought to render the issue moot.) Because I’ve been hardened by the indifference of business owners. You know – the people who admit on national television they weren’t following the law and somehow are the sympathetic victims of rapacious crippled people.

This segment ultimately frames accessibility law as overreaching legislation that demands things that are unnecessary but fails to look at the reality of living in a world that is routinely inaccessible. There is very real truth to the idea that if you aren’t expected to show up then you will simply learn not to. Particularly if your presence and needs are treated as an inconvenience.

It frames people who file these suits as nuisances

One of the glaring omissions of the 60 minutes piece is that it doesn’t look at how these ADA infractions would be ameliorated if not for these lawsuits (in fact it none to subtly suggests that maybe there didn’t really need to be accommodation in the first place).

The ADA is law and yet it is widely overlooked by the people who are supposed to be subject to it. The segment points out repeatedly that proprietors don’t think that the people filing are actual customers but my question is; so what? These accommodations aren’t supposed to be things people have to ask for. They are simply supposed to be available. Why is it relevant who points it?

Cooper also talks about the lack of warning before a lawsuit but he doesn’t actually look at whether warnings are effective. In fact, they go out of their way to make accommodations seem inconvenient and excessive. They point out both the specificity of the requirements (though brief lip service is paid to the importance of this) and the costs. Then they go out of their way to say that the expensive accommodation goes unused.

It basically undermines the very purpose of the ADA.

It doesn’t look at how poor enforcement of the ADA has led to the abuse of disabled people

The segment also looks at how unscrupulous lawyers recruit disabled people to use as claimants and then cheat them out of the proceeds. This is a real concern. The segment however, points at the ability to sue over ADA violations as the major contributing factor in this kind of economic abuse. However, if the ADA was actively enforced it would do away with the very need for widespread filings and thus make this kind of abuse less likely to occur. Suing over ADA violations would be less lucrative.

It puts the blame for societal stigma against disabled people on disabled people who demand access

Perhaps the most egregious part of the segment is that it makes a point of voicing the idea that demands for access breed ill will toward disabled people. The problem is that this ill will already existed. The proprietors just had plausible deniability. They didn’t accommodate because they just didn’t know any better and they didn’t know any better because they didn’t take time  to think about the needs of disabled people and their legal obligations towards them. This lead to the creation and maintanence of inaccessible spaces.

Ill will doesn’t only exist when people acknowledge it. It was just subversive and deniable. Having it pointed out and there being a financial ramification is not disabled people’s fault. Saying it is, only serves to encourage disabled people to stay silent.

***

It would be far better if government took an active role in monitoring and enforcing accessibility legislation. It would likely create a more accessible environment. It would also remove the need for mass lawsuits. It would also remove the proprietor as victim narrative because the law would be enforced more uniformly. People would not be able to opine that they had been hit with an infraction when the guy down the street did not.

Complaint based systems are not useful in enforcing legislation that is designed to help a marginalized group. It creates an adversarial environment where the marginalized are somehow always to blame because they can’t see and force everyone to comply equally.

Creating a law meant to create more equality but not including a substantive way of enforcing it says a lot about how unimportant that equality really is.

The real problem with drive-by lawsuits is not that they happen but that we live in a world that makes them so easy and in some ways necessary to create accessible spaces.

I only wish Anderson Cooper and 60 Minutes had considered that before airing that segment.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*sigh*

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

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

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

How did they test if Dubuque got it right?

They screened it for Autism charities including Autism Speaks

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

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

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

Anna Kendrick asked the parent of an Autistic child

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

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

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

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

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

So what they apparently didn’t do,

Ask Autistic People

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

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

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

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

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

Take a shot every time they mention

Theory of mind

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

Does some unnaturally talented math thing.

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