The TARDIS is Inaccessible: Disability in Doctor Who

 

doctor who logo

Image Description: Doctor Who logo written in blue with a DW in the centre of the two words forming the shape of the TARDIS

 

This most recent season of Doctor Who has had me thinking about just how bad and limited the representation of disability has been on the show. The show which is often very socially conscious has created a universe past, present and future where disability is generally nonexistent or tokenized.

This is of course not just a problem with Doctor Who but is a wider issue of disability representation in the media more generally. The thing that makes Doctor Who stand out (other than the recent storyline of the Doctor going blind) for criticism is that on the rare occassions that there are disabled characters, they are either done very well or very badly. Most recently both at the same time.

The season 9 episode Before the Flood included Cass, a deaf character whose deafness was not a major plotpoint. The character was also played by a deaf actor. This kind of representation is revolutionary. A disabled character who just happens to be disabled.

This trend continued in the 10th season with the character of Erica in The Pyramid at the End of the World. She just happened to have dawrfism. It played no part in the plot. This positivity was however, overshadowed by the Doctor’s blindness–part of a three episode arc–which was dramatically cured at the end of the episode.

It really threw into sharp relief how tokenistic these disabled characters–and it is relevant to mention that not all people who are deaf or who have dwarfism identify as disabled–despite how good they are. They are still really noticeable because of how rarely they appear and yet they appear without question. In order for disability to be truly unnoteworthy is to make it normal and a part of the world of the show but these characters appear and are gone. Disability isn’t even visible in the background as extras. So as normal as the characters are in their stories, they remain noteworthy exceptions outside of them.

This is particularly clear when you look at what happens to the narrative of disability when it happens to the Doctor. Suddenly, the writers fall back on many harmful stereotypes and storylines.

The Doctor’s blindness which begins in Oxygen and is conveniently cured in The Pyramid at the End of The World is purely a plot device that is used to create tension and then conveniently discarded to again further the plot. The fact that this plotline intersected with actual disability representation is offensive.

A blind doctor was an ineffective one. His blindness had to be cured because he could no longer really be the Doctor. Having that moment of cure in an episode also starring a terrifically competent disabled character, really undercut the power of that representation. Particularly because the thing that foiled him was absurd. He needed to enter a code but instead of the more realistic keypad–which he could have navigated without sight–he was inexplicably presented with a combination lock.

The moment was so utterly unrealistic (yes I know it’s sci-fi) and clearly contrived to create the need to quickly cure the Doctor because if he doesn’t get through that door he’ll die.

So the audience is presented with the paradox of the real representation provided by erica’s character and the played out disability as plot device provided by the Doctor all in a single episode.

I want the future–both in the real world and in the universe of Doctor Who–to be accessible but it isn’t. We generally only see disabled characters in if not the present day then in earth type settings. The future in Doctor Who is very much not accessible.

The TARDIS itself is horribly inaccessible which limits who the Doctor can have as a companion and how well he would function if the Doctor became disabled in a way that couldn’t be magicked away for the convenience of the plot. The TARDIS doesn’t have automatic doors, though the amazing Mike Mort designed a shirt with just such an adaptation (buy it here)

 

accessible Tardis

Image Description: A Drawing of the TARDIS, a blue phone booth with Police Public Call Box on the top and a sign on the left door that reads “Police Telephone Free for the Public. The right side door has an automatic door opener with the International Symbol of Access and the words “press to open”

 

The real inaccessibility of the TARDIS goes beyond getting in the door. There are stair to access pretty much everywhere. There are stairs to get to the console and even more stairs to get to the rest of the ship that we never see. I can only imagine that the inaccessibility extends throughout the vessel.

the world of Doctor Who, very much like the real world is inaccessible but in some ways it’s worse because it shows that the world doesn’t get better and that the future is just as if not more inaccessible than the present unless it’s briefly convenient for the plot or to accommodate a single character who will never be seen again.

 

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But Wasn’t it Nice of Them?: How Praising the Helpers Can Lead to Less Aid

cap-2029798_640

Image Description: A black computer illustration of a graduation cap outlined in white.

But wasn’t it nice of them? Shouldn’t people who do things like this be rewarded? These are the questions I am often asked when I critique inspiration porn. Particularly around stories that heap praise on nondisabled people for their assistance of disabled people. The answers to these questions and their accompanying justifications are more complicated than the yes or no answers that the questions imply.

This university graduation ceremony season, the international media has siezed on a story about an American mother who was given an honourary MBA after she attended all of the classes with her son as academic support.

Why would anyone complain about this story? Wasn’t it nice of her to do this? Yes and no.

It is, of course, nice to help people who need assistance but as David Perry points out “Inspiration porn buries analysis of ableist societal structures under a mountain of awwwwwwww.” It is important to consider this story in context. There are other questions people should be asking but aren’t like,

Should she have had to do this?

Why were there no supports provided by the university?

What happens to disabled students who don’t have access to a parent who can take them to all of their classes?

How did having a parent ever present in the university impact the disabled student’s ability to socialize?

Does championing this mother so widely and publicly let the university off the hook from having to figure out how to accommodate disabled students in the future?

So, yes, the mother performed a selfless act for her son. She did it without pay and without the expectation of reward. However, the widespread celebration of her conceals not only the achievement of her son (who was the one to actually complete an MBA after all). It also reinforces the idea that disabled people’s access to things like education should not be the responsibility of society or the institutions themselves but rather on the availability of selfless volunteers.

The selfless volunteers are far too often mothers or other female relatives. The work they do is unpaid and generally considered to genuinely be their responsibility. Not only does this maintain a major system of unpaid labour. It also limits access to opportunities to those few people who have access to it.

It does not create or contribute to a more equal society. In fact, it actively works against it. So, yes it was nice that she attended every class with her son to take notes and otherwise assist him but she shouldn’t have had to.

Some of the justifications I saw around this boiled down to the idea that this mother would take better notes than anyone else because she’s personally invested her child’s success.

I call bullshit on that though. You know who else cares about success? The other students in that class. Many universities use a classmate volunteer system–often with a reward system of tuition credits or the potential to win free tuition (the latter being more common and still less fair)–where classmates share their notes either by taking them by hand and written on carbonless copy paper (how I got my notes through most of my undergraduate degree) or taken on the computer and emailed anonymously to the disabled student. While that system still unfortunately often depends on potentially unpaid labour, it comes from people who are already going to class in the first place and doesn’t require anyone to do much extra work or give up their time. It simply needs to be improved to ensure that note takers are getting something for their effort not just the potential of something.

I had great success with peer note takers. It’s not a flawless system but a disabled student can absolutely succeed using peer note-takers.

Additionally, if professional note takers are used, they have the incentive to do well because if they don’t they can be fired.

A mother is not by default the best or even most preferable option because really who wants their mother following them to class and participating in all their social interactions?

Twitter has also gifted us with many reactions to this story and common theme is this

This idea, that this story is what we should aspire to. This kind of selflessness. Which would be great if it meant a societal change to create more accessibility rather than a statement of support for self-sacrifice in order to access education. These sentiments are also predicated on the idea that this behaviour is or more accurately was normal. There is a false nostalgia here because access is definitely better (though not sufficient) now. There is no golden point in history where disabled people were universally or even widely ferried to school by selfless volunteers.

So, should this mother be rewarded for her actions? I actually think not. I think she either deserved to be paid–I would be open to the idea of her being given the option to pursue a real MBA (not just an honourary one) alongside her son–or external supports should have been provided. What she did deserves a salary, not a reward. Rewarding this kind of action only reinforces the idea that disabled people should be dependent on charity rather than given the right of access regardless of the ability of find or provide a volunteer.

Helping disabled people needs to stop being framed as an extraordinary act because it leads people to think that accessibility is and should be extraordinary, rather than the norm.

 

 

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When People Use Diversity to Defend Sameness in Autism Narratives

“It’s just one story” or so people keep telling me when I protest the lack of diversity in both autism narratives and characters in the media. The thing is that’s exactly the problem.

Film and television have basically been writing fan fiction about the same autistic character in different scenarios for decades.

This character is invariably white

The Good Doctor

Image Description: Promotional poster for the upcoming ABC show The Good Doctor. The title appears in blue over a grainy black and white image of half of series star Freddie Highmore’s face (he is a young white man with dark hair). In contrast to the black and white, his eyes are a vibrant blue.

Male

Adam

Image description: a still from the film Adam where actress Rose Burne (a thin white woman with brown hair pulled up in a messy bun) sits on a bench facing and speaking to Hugh Dancy (a white man with wavy brown hair), the autistic character who is sitting faced forward rather than toward the person speaking to him

Have savant-like abilities

rain man

Image description: Cover art for the Rain Man soundtrack. Dustin Hoffman (a white man with dark hair) who plays the autistic savant walks down a path beside Tom Cruise (a white man with dark hair) who walks with his right hand in his pocket while he carries a bag in his left

There is generally very little deviation. Occasionally, overt savantism is replaced with a special skill or focus as in the case of the film Adam. These minor changes are however not meaningful.Savantism and special or focused skills are treated as almost interchangeable personality quirks.

You will very rarely see and autistic character who is not white and even more rarely see one who isn’t male. These characteristics extend beyond the acknowledged autistic character to those who are merely coded autistic. Those whose behaviour and traits are largely indistinguishable from those of the acknowledged autistic character. The only difference is a lack of stated diagnosis. Examples of such characters include Sheldon cooper on The Big Bang Theory and Spencer Reed on Criminal Minds.

Think I’m exaggerating? I made a chart

Title Character Diagnosed Coded Savant-like Abilities White Male
A Brilliant Young Mind Nathan Ellis Y Y Y Y
My Name is Khan Rizvan Khan Y Y
The Accountant Christian Wolff Y Y Y Y
Rain Man Raymond Babbit Y Y Y Y
Mercury Rising Simon Lynch Y Y Y Y
TBBT Sheldon Cooper Y Y Y Y
Adam Adam Y Y Y
Criminal Minds Spencer Reed Y Y Y Y
Elementary Fiona Y Y Y
Young Sheldon Sheldon Cooper Y Y Y Y
The Good Doctor Shaun Murphy Y Y Y Y

It’s not an exhaustive list but it is an informative one. Seriously, if you come across an autistic character in film or television plug them into this chart and see how many boxes get ticked. Another thing that all of the characters have in common. They were all played by neurotypical actors.

And yet, when I wrote yesterday about the continuation of this single white male autistic narrative in the new show The Good Doctor, I was met with this

one story

Image description: a screenshot of a tweet that reads “People with autism take many forms, faces, and stories. this is just one. Showing that capability isn’t exclusive is so important!” (link to original tweet)

I have a couple of problems with this sentiment. First, it is not just one story. It is pretty much the only story we are told. For this to be an accurate defence, there would need to be evidence that there were other narratives available. Where are they? Second, is it really an accurate story. Another common defence of tired repeated disability narratives is “well some people are really like that“. I am however sceptical about the existence of a man with ridiculous medical skills and genius level proficiency in several areas. I’ll wait while you find me a real life stand in for this imagined magical autistic white man.

It is true that Rain Man character Raymond Babbit (though not the story) was loosely based on actual savant Kim Peake (who was not himself autistic) but even then it was more a mishmash of diagnostic traits than a portrayal of the man.

These characters have a fictionalized kind of autism that focus on rare traits like savantism and then sprinkle in more common traits like sensitivity to noise and difficulty with eye contact so that people see enough recognizable autistic traits to get away with an authenticity defence to tell basically the same man’s story over and over. They just put him in different scenarios. The biggest change in autistic characters overall is that they’ve become cuter (if they’re children) or fuckable (if they’re men). Though actually having sex is rare for these characters. They’ve mostly just gotten hotter. This switch to a more appealing autistic male is generally to use their savantism or special skill as a consolation prize. Sure, he’s autistic but it makes him a fabulous doctor and he’ll save that kid’s life.

This leaves little room for autistic stories where savantism or special skills don’t counteract the perceived unpleasantness of the autism for a predominantly neurotypical audience.

Despite this, there is still the idea that stories about marginalized populations should be “authentic” which is where the “This is just one story” line gets pulled out like a weapon to defend these all too similar stories.

During the promotion phase prior to the release of The Accountant, actor, 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.’”

It is both unfortunate that this line is being used by people in the entertainment industry as a promotion tactic. It is also unfortunate that a parent with an autistic child helped her do it.

The phrase “if you’ve met one autistic child, you’ve met one autistic child” was meant to indicate the true diversity of the autistic experience. Not be used as a blunt object to defend a film about yet another magical white autistic man. It does not mean “Do whatever, you want. Autism is basically whatever you want it to be”. Though that is how the entertainment industry interprets it.

Seriously, the next time someone defends a fictional autistic narrative through the diversity of autism. It had better actually be a story I haven’t seen before.

And can we just please put a moratorium on putting white men in those stories because the real diversity of autism goes well beyond diagnostic traits.

 

 

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No, Canada Will not Cover Your Preexisting Condition

With the recent vote for the American Health Care Act (AHCA) to repeal and replace the Obama era Affordable Care Act (ACA), there has been a lot of discussion on who the AHCA will hurt. One of the (many) concerns is that the new legislation should it pass in the senate will roll back rules guaranteeing coverage for people with preexisting conditions. These changes if enacted would disproportionately affect disabled people. This has spawned the online protest #IAmAPreexistingCondition to put a human face on the people who at risk of losing their healthcare or who will see its cost skyrocket.

The changes have also spawned a lot of Canadian smugness and this meme has been making the rounds.

Trudeau Preexisting Conditions

Image description: Canadian Prime Minister, Justin Trudeau, a white man with dark  hair in his forties gazes into the distance with his fisted hand touching his lip in a pensive expression. Text on the image reads “Hey girl, I’ll cover your preexisting condition”

The thing is the meme is a lie. In terms of how healthcare works in Canada, the language of preexisting conditions is generally meaningless. There are simply services that are or aren’t covered. If you’re in the system, you’re in the system. Canadians generally don’t talk about preexisting conditions the way Americans do because it’s a system we were either born into or gained access to simply by being Canadians.

The thing is though, even though we don’t generally use the language of preexisting conditions to discriminate in our healthcare system, there is still a lot of discrimination. As I mentioned, rather than excluding people based on preexisting conditions, there are simply services that are or aren’t covered. Whether a service is covered depends on whether it is considered essential. Many services largely associated with the care of disability are not considered essential. As such they either not covered and people who need them either have to pay out of pocket or seek private insurance or coverage is given at the whim of individual provinces.

This creates a second class access to the healthcare system for disabled people. We either may not have access to things that we need or our access to them depends entirely on where we live.

One of the primary principles of Canadian healthcare is that it’s supposed to be portable. You’re supposed to be able to get service regardless of your province of origin. This, however, does not apply to services that are not considered essential. So while I as a Saskatchewan resident have been able to get X-rays in BC (for an injury) and an ultrasound in Ontario (oddly enough for the same injury). I do not have access to consistent care related specifically to my disability because Saskatchewan may cover things that other provinces do not or vice versa and I can only access what is available in Saskatchewan.

This creates a couple of issues. There’s the fact that depending on your province of residence you may have less access to covered disability specific care. So the system is inherently unequal. There is also the fact that interprovince bureaucracies make it difficult to determine which services you should have access to while out of your home province or who to bill if you can figure it out. The outcome is that disabled people end up paying out of pocket for things that should be covered.

So for people within the Canadian system, there are still access inequalities. Inequalities that largely target the same groups of people likely to be disadvantaged if the AHCA passes.

The thing is, that isn’t the end of how the Trudeau meme fails. There is a scenario where access to the Canadian healthcare system does consider preexisting conditions. Immigration. Having a preexisting condition pretty much excludes a person from being able to access immigration to Canada. Which why this corrected meme needs to hopefully go as viral as the original (H/T Alex Hagaard)

Trudeau Meme corrected

Image description: The same meme as before except that text has been added over Trudeau’s face which reads “Except Canada doesn’t let disabled people immigrate #StopAbleism”

Immigration is pretty much the only circumstance where Canada considers preexisting conditions. So the meme is a lie. Canada will not cover your preexisting condition. If you have access to the system you are covered for a set of predefined essential services and the services that are most often considered inessential are those associated with disability.

So, no, Canada doesn’t cover preexisting conditions and flaunting healthcare access does nothing to address the very real dangers being faced by disabled people in the United States right now. This meme just taunts the people most negatively impacted by a potential adoption of the AHCA with lies.

*Note: I do not want to get into an oppression olympics competition here so comments along the lines of “suck it up Canada is still better” will not get through. They are reductive and also don’t address the disingenuous smugness over Canada’s healthcare system.

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Bill Nye Saves the World from Disabled People

Bill Nye Saves the World

Image Description: Bill Nye a 61-year-old white man with grey hair stands atop the earth with his hands on his hips and lab coat billowing out behind him like a superhero’s cape in a promotional image for his Netflix series Bill Nye Saves the World.

When I first heard that Bill Nye would be starring in a new Netflix series, I was initially excited to relive some 90s nostalgia. The show is geared precisely towards us 90s kids who grew up watching Bill Nye the Science Guy. Unlike the show of my childhood, however, Bill Nye Saves the World is entirely geared toward Nye featuring topics that have a global impact. The first episode deals with the politically contentious but generally scientifically accepted topic of climate change. Another episode deals with sex and gender and debunking myths around how sex & gender are binaries.

I, however, became concerned when I noticed that there was an episode on Designer Babies. A concern that was confirmed when I watched the episode.

The episode deals with issues pertaining to in vitro fertilization (IVF), genetic testing and gene editing. All three but the latter two especially have implications for disabled people but Nye and his guests only look at the implications for nondisabled people often in the context of the presumed negative impact of not being able to choose to not have disabled children. There is no discussion of the impact of such technologies on disabled people themselves even though both Nye and his guests acknowledge that not all disabilities can be tested for and thus screened out.

The episode starts badly with a somewhat off topic shoutout to Victorian evolutionary scientist Alfred Russel Wallace. Nye mentions him because he feels that Wallace has gone unrecognized for his contributions to helping create the theory of evolution.

Nye only asks but does not really engage with the question of whether gene editing is either playing God or toying with evolution. It is, however, worth looking at particularly with his shout out to Wallace.

Alfred Russel Wallace like many early evolutionary theorists (Darwin included) used the theory of evolution to shore up arguments of white supremacy. He believed that white people were so superior that eventually, non-white people would die out along with less desirable members of the white population to eventually create a utopia that did not suffer from any social ills*.

John Langdon Down would later expand on that to explain how the clearly superior white race could be tainted with congenitally disabled members. Down theorized that white people were more evolved than other races and that intellectual disability was actually an evolutionary throwback that proved this. He wrote,

Here, however, we have examples of retrogression, or at all events, of departure from one type and the assumption of the characteristics of another. If these great racial divisions are fixed and definite, how comes it that disease is able to break down the barrier, and to simulate so closely the features of the members of another division. I cannot but think that the observations which I have recorded, are indications that the differences in the races are not specific but variable.

These examples of the result of degeneracy among mankind, appear to me to furnish some arguments in favour of the unity of the human species**

John Langdon Down used this theory when he categorized what is now known as Down Syndrome but was originally classified as Mongolian Idiocy.

The history of evolution is full of white men arguing that they are somehow superior and classifying difference as inferior. These classifications had a real social impact on the people being classified. It helped shore up institutional racism. Gave birth to the eugenics movement and has lead to genocide.

This is why looking at the social impact of science on the people being classified as undesirable is so imperative.

Bill Nye however, does not do this instead the only social impact of genetic testing and gene editing given in the episode is the impact on the people doing the classifying. The overall assumption is that disability is bad and that avoiding it is inherently good. So when they consider the potential negative impact gene editing they look at the cost and the people for whom that cost will be prohibitive. They do acknowledge that this disparity in access will almost certainly benefit white supremacy. The downside as it is presented is only that poorer families (who will invariably be disproportionately families of colour) will lack access to the options of gene editing and thus be burdened with disabled children.

The show does not at any point consider the potential social repercussions of gene editing on disabled people themselves.

They do not consider what the ability to choose to not have certain kinds of disabled children (because they do acknowledge that not all disabilities can be tested for) will mean for disabled people whose conditions cannot be edited out.

They do not consider how the economic disparity in access to gene editing technology will expand existing economic disparities for disabled people.

They do not consider what happens when the technology fails because nothing has a 100% success rate. What of the children who were supposed to be born “healthy” but weren’t.

What will this mean for people who acquire disabilities (a population that exceeds the number of people born disabled)?

In a world where disability is not only almost universally considered bad and which contains options to opt out of having disabled children, will support for accessibility legislation like the ADA or AODA continue?

Bill Nye considers none of those questions because they are social ones, not scientific ones. This is the problem with a purely scientific discourse. It ignores the social impact.

At the beginning of the episode, Nye acknowledges the possibility of a slippery slope but he dismisses it by saying that a slope needn’t be slippery. He, however, does this despite forgetting to acknowledge the humanity of disabled people or their very real stake in this conversation. We are to Nye best served by not existing in the first place. It somewhat robs his argument of weight.

No disabled people were included in the episode.

 

 

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*Wallace, Alfred R. “The Origin of Human Races and the Antiquity of Man Deduced from the Theory of “Natural Selection”” Journal of the Anthropological Society of London 2 (1864): Clviii-lxxxvii. JSTOR [JSTOR].

**Down, J. L. H. “Observations on an Ethnic Classification of Idiots.” London Hospital Reports 3 (1866): 259-62.

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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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.

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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.

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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.

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