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.

Buy Me a Coffee at ko-fi.com

Advertisements

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

A little over a year ago a tweet went viral.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Buy Me a Coffee at ko-fi.com

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

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

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

kevin-split

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

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

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

elijah-price-unbreakable

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

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

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

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

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

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

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

alice-walker-the-village

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

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

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

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

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

 

 

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.

Buy Me a Coffee at ko-fi.com

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

No, I don’t Worry about Alienating Allies

I have noticed in my online activism that if I call out problematic behaviour or comment on the cultural context of disability being mentioned in particular contexts either by an ally or by someone who is perceived as an ally, I will often be chastened for the nebulous offence of “alienating allies”.

When this happens, allies seem to stop being people who are devoted to the idea of meaningfully improving the lives of disabled people but are in fact thin skinned individuals who will reject the rights of disabled people if they are not rewarded with copious amounts of praise regardless of the impact of their actions.

As Ginny Di puts it,

The thing is, the pushback that I experience has never been from the people I am directly commenting on but either other disabled people who are concerned that the criticism will lead to the loss of allies or simply from people who don’t like seeing someone they admire being criticized for any reason.

People ask me why I criticize people publicly instead of trying to address my concerns with them privately. The answer to that is that I am invariably responding to something that someone has done publicly. If they have done something potentially harmful publicly, it needs to be challenged publicly because in this case, the response is not necessarily about directly educating the individual but about mitigating the potential harm of their actions. In some (if not most) cases, it is unlikely that I have any real potential of reaching that person directly. An example of this is my twitter response to Meryl Streep’s Golden Globes speech.

People seemed very concerned that Meryl Streep would change her already purely sentimental stance that people shouldn’t bully disabled people to an active undermining of disability rights simply because I dared to point out that her speech didn’t actually achieve anything for disabled people and in fact effectively used the stereotype of the disabled victim to galvanize emotional support for a broader anti-Donald Trump message.

I was hardly the only disabled person who was concerned about the fact that a vague mention of “being nice to disabled people” was being treated like cutting edge disability rights activism. As Jay Ruckelshaus–who wrote not about Streep but political discussions of disability generally–pointed out in the New York Times,

That a statement on disability garnered sympathy from across the political spectrum was unsurprising, at least to me. I’ve grown used to my wheelchair trumping (forgive me) other political and moral concerns. Rarely, if ever, do people contest my claims that we must do more for those with disabilities: Greater access? Better employment training? More flexible school curriculums?…

Initially, this harmony would seem helpful. Free from partisan discord, advancements for the approximately 57 million Americans with disabilities should be easier to achieve, borne aloft by the wings of certain progress. Why, then, do rampant unemployment and educational disparities endure, and why does success remain the exception?

I think part of the reason is the insulation of our pro-disabled political consensus. Its logic is rooted not in any deep belief in the equal worth of citizens with disabilities, but rather in a general aversion to disability. This is related to the charity impulse that has always surrounded disability — and has constrained liberation efforts by assuming that inequities are unfortunate but natural realities to be mitigated through compassion, rather than politically structured injustices. There is also a profound lack of disabled people in the public sphere, meaning any substantive discussion that does occur is extremely rare.

Many have convinced themselves that positive sentiment is an effective stand-in for meaningful action. Unfortunately, that action has rarely if ever followed on the heels of a call for sentiment, that did not demand action for disabled people.

The irony is, I don’t even know if Meryl Streep is aware that disabled people criticized her speech. She hasn’t addressed it, and yet people were so very concerned that she would rescind her already rather ineffective support as a result of it.

I can just imagine the conversation that almost definitely didn’t actually happen (#alternativefacts)

Meryl Streep’s personal assistant: Excuse me, Meryl but it appears that a disabled person has criticized your speech on Twitter.

Meryl Streep: Well, fuck disabled people then.

I have no way of knowing if Meryl Streep is aware of the criticisms that disabled people made of her speech and if she is how she feels about it but I do know that my criticism had an impact on others. My tweets were widely shared with many people thanking me for the new perspective or simply saying that I’d given them something new to think about. Those people far outnumber Meryl Streep. They are allies gained. Allies who listened. Allies who will hopefully when it comes to taking action, will actually act for disabled people rather than falling back on the comfortable inaction of sentiment.

Now Sometimes, the person who is being criticized does become aware of the criticism but even this doesn’t worry me too much as long as the person being criticized is really an ally. Last month, I wrote a critique of a video on autism. The creator, Dylan Marron had good intentions but missed the mark. He not only listened to the criticism from myself and others, he redid the video and apologized.

Text of his full apology can be found here.

Allyship should not be judged by the initial intentions (or perceived intentions) but in whether the person is as concerned with the impact of the outcome. Simply expressing sentimental support for disabled people should not be sufficient to be considered an ally.

Placing to much concern on alienating allies is to tell marginalized people that they should be satisfied with whatever they can get regardless of whether it is ineffective or even harmful because intentions trump impact.

It’s essentially treating marginalized peoples who are fighting for their human rights like spoiled children who didn’t get what they wanted for their birthday.

If offering a critique of someone’s actions was sufficient to make them abandon disability rights, then chances are they weren’t really an ally in the first place. And if offering that critique gets other people to think more critically about their intersectional human rights activism then that’s a bigger gain. If it gets the person being critiqued to rethink and change tactics to be more effective then all the better.

So no, I’m not all that worried about alienating allies because critique actually helps recruit allies and helps make it clear who the real allies are and who is just using us for a sentimental talking point.

 

 

I have Concerns about The March for Science

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Officially their goal is,

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

publicly funded and publicly accessible science

as a foundation of American freedom and prosperity.

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

support scientific research and incorporate science into their decision making.

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

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

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

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

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

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

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

Who are you?

When is the march going to be?

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

How diverse is the current set of organizers?

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

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

Why do you think science is apolitical?

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

 

I also have some suggestions.

Get your organizational ducks in a row.

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

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

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

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

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

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

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

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

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

 

 

Update:

The March for Science has updated it’s diversity statement

science-march-diversity-updated

The text now reads

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

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

science-is-political

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

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

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

Disability as Punishment in Dirk Gently’s Holistic Detective Agency

This post contains spoilers for Dirk Gently’s Holistic Detective Agency.

I recently finished watching Dirk Gently’s Holistic Detective Agency on Netflix. It’s a show based on books by Douglas Adams (who also wrote The Hitch Hiker’s Guide to the Galaxy). The premise of the show really defies coherent summary. You have to watch all eight of the episodes to actually figure out what is going on. Which is in no small way, part of the appeal. I won’t try to explain the plot and this post really won’t spoil much of the plot. I am instead going to focus on how disability fits into the story and character development of two of the show’s characters.

The show largely follows Todd Brotzman who is mostly unwillingly swept up into the drama of the show. Todd is an underemployed (and eventually unemployed) loser. Despite this, he is the primary financial caregiver of his sister, Amanda who has a condition called Pararibulitis. This fictional disorder results in Amanda having vivid hallucinations of being in extreme pain. She hallucinates both a drowning and being on fire. The medications for Pararibulitis are expensive and Todd is Amanda’s only source of financial support as the disease has left her unable to work and primarily confined to her home. It is revealed early on that Todd is financially responsible for Amanda because their parents spent all their money on Pararibulitis (which runs in their family) treatments for Todd.

It is later revealed that an unscrupulous Todd has lied about having the condition to extort money from his parents. He supports his sister out of guilt because their parents’ money had run out by the time she manifested the disease and really needed the treatments.

Throughout the show, Todd goes through a lot of personal growth which includes coming clean about his lies and confronting his other less than legal behaviour (including theft from friends and his landlord).

It seems that by the end of the current season Todd is on his way to redemption by taking responsibility for his past. That is until the very end of the last episode which shows Todd talking on the phone with Amanda (who is still coming to terms with his betrayal), suddenly he drops the phone as he experiences a hallucination of his phone burning a hole through his hand. The last shot is of him writhing on the floor in pain.

Much of the show’s plot revolves around the idea of interconnectedness. The show’s titular character Dirk Gently is a pseudopsychic entity who succeeds mainly through happenstance. Things are predestined. Everything basically happens for a reason.

So, when Todd presumably manifests Pararibulitis at the end of the season, it is clearly meant to.

As soon as it became apparent that Todd had manifested Pararibulitis, I was frustrated at the use of disability as punishment. A punishment that was confirmed as the song First Things First by Neon Trees played in the background. The opening lyrics to which are,

You are never gonna get
Everything you want in this world
First things first
Get what you deserve

The disability as being somehow deserved trope is particularly disgusting because it is so prevalent outside of fiction.

The idea that disability is the result of sin is ancient and continues to be prevalent. Whether it be seen as a direct punishment for an individuals actions or a more generalized reminder of the sins of humanity.

Consider the stigma around HIV & AIDs. A lot of it stems from homophobia and the idea that people who contract the disease deserve it for their perceived sexual indiscretions.

Disability as just punishment is an idea so pervasive, that when it happens to people who have done genuine harm, it is framed as righteous. Consider Ava Duvernay’s Martin Luther King Jr. biopic Selma. At the end of the film while While King gives his speech at the Alabama Capitol, the camera revisits key historical figures in the film as an epilogue.

Amongst stories of activists who were finally able to register to vote or who eventually went on to win places in public office, they include an update on Alabama’s Governor. A man who fought hard against civil rights. This is what they shared.

george-wallace-1

Image description: A screenshot from the film Selma showing Alabama governor George Wallace (portrayed by actor Tim Roth). To his right is text that reads “George Wallace: Ran for President unsuccessfully four times. He was left paralyzed by an assassination attempt in 1972”

The choice to include disability along with his failure to move his political career forward after the events of Selma is clearly meant to show that he got his deserved comeuppance for his racist policies.

While Wallace was absolutely on the wrong side of history and did immeasurable harm with his racist policies and legislation, it is inappropriate to suggest that he deserved disability. Not because he didn’t deserve to be held accountable for his actions but because if we accept that disability is a just punishment then we must accept that disability is universally a negative experience.

Not only does the suggestion that Wallace got what he deserved reinforce the idea that disability is a punishment but it reinforces the idea that disability is and should be a negative experience.

As disabled people fight through deeply held cultural misconceptions about disability, it is harmful to have it suggested in either lighthearted comedies (Dirk Gently) or in reference to real people (Wallace) that those who do harm should suffer and that suffering should look like us.

Believing disability to be a punishment allows people to justify not supporting necessary services and accessibility.

Media needs to do better, even when it’s as surreal and unrealistic as Dik Gently’s Holistic Detective Agency because making it acceptable to say “What goes around comes around” in terms of disability is far from fictional. It’s probable the most realistic thing in that show and that’s a problem.

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.