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.

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But it Wasn’t Designed for You: How Ignoring Accessibility Becomes the Excuse for Perpetuating Inaccessibility

I am sick of seeing people responding to evidence of inaccessibility with “but it wasn’t designed for you”. This argument has been used to both try and shut down calls to make inaccessible things more accessible (which is what I’ll be focusing on) and to limit access to accessible things that have been deemed unnecessary to nondisabled people (see my piece of accessibility to fresh food here for an example of that).

So the much anticipated augmented reality game Pokemon Go was released in several countries last week (though not Canada yet). It is already wildly popular and has had a noticeable impact on Nintendo stock prices.

The game–which is based on one originally released for Gameboy and which also had a television series and card game–allows smartphone users to find and catch pokemon in the real world.

Since it’s release it has been criticized for being inaccessible to many people with disabilities. The game requires that players actually be able to get around public spaces to find the pokemon and visit pokestops (which provide players with necessary items for the game) and train at gyms.

For people with limited mobility or who have difficulty leaving their homes. The game is entirely inaccessible because movement is completely tied to an individual’s GPS location.

I am going to spend less time talking about the accessibility issues of Pokemon Go itself because others are already doing that better than I could. I am instead going to use the game and people’s reactions to having its inaccessibility highlighted as a timely way of addressing how people’s  reactions to inaccessibility being called out end up justifying and perpetuating that inaccessibility.

When a new product is called out for being inaccessible or when disabled people advocate that a company make an inaccessible product more accessible, two related arguments inevitably come up.

  1. This game wasn’t made with you in mind.
  2. You are not the target demographic.

On the face of it these arguments seem identical but there are some key differences. In the first case, the exclusion may just be an oversight but it is one that will be justified as an understandable lapse.

The demographic argument works best when a product is made with a specific demographic market in mind.

The problem is that with the first argument it is far to acceptable to brush off inaccessibility as “oh well, I guess this one thing just isn’t for you” despite the fact that it is very far from being “just one thing” and is in fact representative of a widespread problem. It is far to common and easy to ignore whether a product or service is inaccessible.

In order to head off reactionary comments, I am not arguing or suggesting that everything can or should be made accessible for two reasons.

  1. Accessibility is not and never will be a one size fits all phenomenon.
  2. There are just some things that people with certain disabilities shouldn’t do for reasons of safety. For example, I have a weak arm and should for my own safety and the safety of others never operate a chainsaw. So I’m not going to go after chainsaw manufacturers to their products because I shouldn’t.

So please don’t send me a rant about how [insert random unrelated product or service] is either essential but still inaccessible or which regardless of redesign cannot be made safely accessible.

When disabled people point out accessibility issues it is usually because a.) they think with some tweaking the thing itself could be made accessible or b.) they are expressing a consumer desire to have someone redesign an inaccessible thing to be accessible. It is not a wholesale attack on all things.

So continuing on I am now going to address the “they just didn’t have you in mind” argument. There are way to many things that just happen to be inaccessible because the creators either didn’t consider disabled people or determined that accommodating the would be to time consuming. Far to many of these products (Pokemon Go included) could be made accessible or have accessibility mods added on if the creators cared to put the effort in.

The fact that far to many don’t is where this argument of “oh they just didn’t make it for you” really falls apart. Almost nothing that is available to the general public is made with disabled people in mind. We are far to frequently relegated to the realm of “niche target market” catered to primarily by medical companies or adaptive technology companies.

This leaves us out of far to many mainstream pass times. This is where it stops being an oversight and becomes a problem where out exclusion and reliance on only specialized targeted products and indicative of systemic and socially acceptable exclusion.

As a target demographic we are also treated differently, with products geared towards us specifically only made available in specialty stores.

In terms of a more mainstream understanding of target demographic, we are still separate because generally target demographics are based on goals and an understanding of who will be interested in a product. Not actually mandating who can use it.

People use products not expressly geared toward them all the time without consequences. The problem comes not from who a product is targeted at but at who is expressly excluded from using it.*

But back to Pokemon Go. Where does it fit into all this? The game itself  has a very broad demographic target. It is as much as any single product can be geared to everyone.** This is what makes the complete lack of consideration of disability so frustrating because it is a case of “this is actually for everyone except you”.

The sheer scale of the game’s popularity only emphasizes this fact.

So, I would ask that any person who reacts dismissively to calls for more accessibility (whether it is in Pokemon Go or anything else) to ask themselves

Why is this request making me so uncomfortable?

I would then ask you to express solidarity, to show companies that you actually are comfortable sharing space (and pokemon) with disabled people. Tell companies that disabled people deserve accessible products and don’t deserve to be forgotten or an afterthought.

 

 

*I am aware and do not wish to minimize the fact that there are certain industries which don’t expressly forbid people from outside their target demographics do create cultures within those industries which are very unwelcoming and often abusive to people who are seen as outsiders.

**It is also important to note that disabled people are not the only group criticizing the game’s inclusivity (see here for another example).

When Accessibility gets Labeled Wasteful

Note on Accessibility

There has been some concerns about the contrast on this blog, unfortunately some find it hard to read light text on a dark background while others prefer it. I am looking into getting accessibility options for the blog but until then if you prefer to read dark text on a light background, this post is available on Medium here.

 

So there’s a debate going on, on Twitter right now between disabled people and people who either claim to care about the environment and or just want to complain about “lazy people”

The tweet that started it all

orangegate cropped

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”

The original tweet has been shared over 70,000 times. Whole Foods has apparently agreed to remove the prepeeled oranges from their stores. Environmentalists and those who hate laziness rejoice!

The problem is that this discourse completely ignores how preprepared food impacts people with disabilities. The most common complaints about the sale of these oranges is either the wastefulness of the additional packaging (which is true but somewhat misdirected as I’ll discuss later) or that anyone who buys this must be incomprehensibly lazy.

As a person with limited hand dexterity, I look at this and see an easier way to eat healthy food. I actively avoid eating oranges, not because I dislike them (they are definitely tasty) but because I have so much difficulty peeling them. Any attempt to peel an orange is likely to result in an unappetizing mess because I’ve squeezed the orange to hard while trying to maneuver it for peel removal.

I don’t have access to peeled oranges from my grocery store though I’d probably take advantage of them if I did. I do buy precut vegetables all the time because it is more convenient and safer for me to do so.

Preparing food with limited mobility is both hugely time consuming and potentially dangerous. While adapted cooking tools do exist to help offset those issues they are really expensive (I wrote about that here).

Anything that helps make my regular acts of daily life safer and more convenient is always a plus. So I was one of a number of disabled people who pushed back against the wholesale shaming of preprepared foods. The responses I got were informative in looking at how nondisabled people disregard and try and shut down discussions of accessibility. Rebuttals to inserting disability and accessibility into the conversation included what I consider the most ridiculous attempt to maintain the moral high ground. It was,

I mean accessibility is nice and all but you know that wasn’t the thinking behind this product. It wasn’t designed for disabled people.

You know what, that’s probably entirely true. Whole foods was probably trying to cater to the convenience aspect. This is supported by the fact that the protest against the product on environmental and anti-lazy grounds was so successful.

The thing is this argument is hilariously irrelevant. In fact it shows that things don’t need to be directly conceived as accessible products to function that way. In many way things that are accidentally accessible are better than things that are specifically designed to be. This is because things that are accidentally accessible are marketed and available to everyone and are thus likely to be more easily available that an accessible product which is likely only sold in specialized stores. Seriously, accessibility that requires no thought to implement is the best.

Other arguments I got were,

Peeled oranges have a shorter shelf life so how convenient are they really?

This is true and it indicates just how much planning has to go into living while disabled. I have to plan my meals around the fresh produce I buy more strictly that others because I buy some things precut. This can be inconvenient but it pales in comparison to being forced to rely more heavily on canned or other processed foods that have a longer shelf life. My disability doesn’t disappear just because a whole head of cauliflower will last longer in my fridge than smaller prepared florettes.

and

Peeled oranges are certainly going to cost more than unpeeled and isn’t that a barrier?

Also true but here’s the thing, being disabled is expensive and costs for accessible products can be prohibitive. It is however easier to budget for the extra dollar or two that prepared fruits and vegetables are going to cost every couple weeks than the dozens or hundreds of dollars buying adapted cooking equipment will cost up front. This is a case where the cost should be the cause for protest not the cost being used as an excuse to protest the product. I’m all for my life being more affordable.

Other disabled activists dealt with other arguments. The person who argued most ardently with me was actually pretty tame and seemed more clueless than anything as they clearly didn’t think their arguments through and went away quietly when I calmly rebutted their arguments. Others were not so lucky. Things got a lot messier and ableist as Twitter user Ana Mardoll learned as she systematically tore apart those arguments (for a full view of this thread click here)

Issues arose when protesters prioritized the environment over the experiences of disabled people. Though as Ana points out those plastic food containers are hardly new. They are a ubiquitous sight at any grocery store deli housing things like artisanal cheese, salads and mac & cheese. Yet how is it that the wastefulness arguments crops up over something that is accessible, rather than the widespread use of plastic containers generally. Not to mention at least these look like the could be reused or repurposed. Where is the protest over bags of prepared salad? I guess peeling an orange is to easy but the convenience of salad in a plastic bag is to much to be denied.

Ana further points out that disability inherently comes with a greater need for product consumption. Disabled people need mobility aids and other tools that inevitably have an impact on the environment. Many of the people she encountered appeared to suggest that in the fight for the environment, disabled people are too inconvenient and should not be accommodated.

People who conceded that disabled people should be able to buy peeled and prepared food were sometimes still unwilling to give up the environmental angle and suggested that we should just ask the clerk at the register to peel the oranges upon purchase.

This is both an issue of hygiene because, I pretty sure those oranges in containers were peeled in an environment that was more controlled for hygiene than the store checkout where the clerk has been in contact with dozens of people and their money without the benefit of regular cleaning.

Also disabled people should not have to jump through additional hoops to get things which is both an unnecessary wate of time but forces us into a role where we must ask for help.

The issue here isn’t that the environment isn’t important. It absolutely is but environmentalism has most definitely ignored disability and accessibility. Basically if something is billed as environmental. It is almost certainly inaccessible. Consider the love affair with ogling (though mostly not actually moving into) tiny houses. No micro home is ever going to be wheelchair accessible and many of them depend on loft space accessed by a ladder for sleeping so even ambulatory people with limited mobility can’t use them. They are a popular trend in cutting the carbon footprint though. Downsizing generally is considered the easiest way to become more environmentally friendly. It is however just not really an option for disabled people where additional space and adapted devices are required for daily living.

Far to often if a location heavily touts its low environmental impact, you can assume it’s going to be inaccessible because they are cutting electrical use by not having things like an elevator.

I keep thinking of my stay at the Planet Traveler Hostel in Toronto several years ago while in town briefly for my sister’s wedding (before I moved here for school). It is touted as being very environmentally friendly. While there the owner bragged about all the environmental upgrades. The thing is you can’t get anywhere in the building without having to go up or down at least one and usually more flights of stairs. Stair that are narrow and pretty steep. I showed up the with my luggage and wearing my AFO so stairs not the greatest. I managed but it was uncomfortable and time consuming. If I was any less mobile than I am, it wouldn’t have been an option and I’d have had to beg family members for money to pay for a hotel (as I had been unemployed for over a year at that point and had spent the last of my money on the plane ticket)

I would love to see containers with prepared food get more environmentally friendly but more importantly environmentalists need to start considering disability and accessibility whether it be in finding more sustainable way to create the products we rely on to accessible sustainable housing. What I don’t want to see is people throwing disabled people under the bus because they’d rather get rid of a product than figure out a way to deliver it sustainably.

Also if your main concern over the peeled oranges was a rage over widespread laziness. Basically anything that benefits lazy people is going to be accessible to some degree so embrace the convenience (or just don’t buy it) and don’t add a level of shame to buying a product that actually makes our lives easier and which in conjunction with other similar products can actually improve our independence and quality of life.

Updated to add this horrendous defense

So basically disabled people should not be allowed to expect or demand better access to food because we never used to have it. *sigh*

and the argument is off Twitter and Whole Foods is being condemned by the environmally conscious site Treehugger here ableism is unfortunately winning the wider war for narrative dominance.

Update 2

The Huffington Post has gotten on the “Thank god, Whole Foods scrapped this thing” bandwagon with no mention of how disabled people have engaged in the conversation.

Both Reuters and GOOD have written about this and managed to mention the disability perspective.

Also from Mashable

Update 3

This horrible article from Global Citizen is a thing. It presents the disabled protesters as whiny and ill informed and further suggests that we have loads of accessible food options (no sources were cited for this claim)

Update 4

A great blog post from Antioch College Food Committee which actually starts to unpack the inaccessibility of much environmental activism and is committed to considering how their choices in eco living might impact access to food.

Update 5

Image description: Peeled oranges stacked in mason jars with the caption “Is this more a peeling?”

So Whole Foods sent out this Tweet which pretty much confirms that they at least have not considered the disability aspect as mason jars may be more environmentally friendly but they are certainly less easy to open that a plastic tub. So much for requests for more accessibility along with sustainability. While I’m sure they are not actually selling these jarred oranges. It shows that they are not listening to this side of the conversation.

 

How Secret Limitations on Grants for Disabled Students Hurt Us

Being a student with disabilities can be a complicated and expensive endeavor. While university is a financial strain for most students, disabled students often have additional costs associated with either services or equipment that we require to succeed academically. The government does recognize this additional financial burden and has grants in place to offset them.

The problem arises from the fact that the policies and restrictions for these grants are shrouded in mystery and if you can identify them, don’t necessarily mesh with reality.

On the surface the Canadian grant for Special Services and Equipment for Students with Permanent Disabilities seems amazing. It is advertised as offering qualifying students with funding up to $8000.00/academic year for services like tutoring or equipment like computers and adaptive software.

I have benefited from this grant in the past and hoped to access it again as I begin my PhD. Much of what I had received previously is either functionally obsolete after two operating system upgrades makes them no longer compatible with modern computers or just no longer functioning at all. As a result I applied for an updated version of Kurzweil 3000 (mine no longer works properly). If you are unfamiliar with Kurzweil it retails for over $2000.00 CND. It is also invaluable in that it enables me to get through my extensive list of required course readings.

The problem, the grant policies don’t allow for full upgrades of Kurzweil (purchasing an updated copy), only software upgrades (something that isn’t even available). On paper it looks like they understand that software evolves and that students need access to that update except they will only pay for it in a form that doesn’t exist. Effectively making their upgrade policy useless.

The biggest problem here isn’t that the policies are bad. Bad policies can be combated with evidence of their uselessness but that, the policies aren’t readily available to grant applicants. All you know when you apply is that you could be eligible for up to $8000.00/year. All the fine print surrounding cost restrictions and what they will replace is hidden and only available to the people deciding on whether or not you are approved.

I only found out about the restrictions after, I was only approved for a fraction of the funding I had applied for. I call my local student loan office and was met with a wall of statements like “well it is not our policy…” or “we have funding limits on…”

None of this information is available to applicants, you just end up with wrenching disappointment when you are not approved for things you were counting on.

On the National Student Loan Service Centre website, the grant is described like this

If you require exceptional education-related services or equipment, you may be eligible to receive the Canada Student Grant for Services and Equipment for Students with Permanent Disabilities. This grant offers:

  • up to $8,000 per academic year (August 1 to July 31) for each year of studies after high school (including undergraduate and graduate levels), provided you continue to meet the eligibility criteria.

The assistance provided under this grant is determined apart from your assessed need.

Eligibility

You are eligible if you:

  • apply and qualify for student financial assistance (have at least a $1 of assessed need)
  • are in a full-time or part-time program at a designated post-secondary institution
  • meet the criteria for students with permanent disabilities
  • include one of the following with your loan application as proof of your permanent disability: a medical certificate, a psycho-educational assessment, or documents that prove you’ve received federal or provincial permanent disability assistance
  • provide written confirmation that you are in need of exceptional education-related services or equipment from a person qualified to determine such need
  • show, in writing, the exact cost of the equipment and services.

The website for my provincial loans website is even more optimistic. It says that if your needs exceed the $8000.00 limit that you may be eligible for an additional $2000.00 from the province. They then link to the various forms that must be filled out. There is no mention of specific policies or restrictions (even though it’s the government you know they must exist).

You only learn about a policy if you ask for something that goes against it. You’ve already waded into the deep end of bureaucracy through the application process. You got the proof of permanent of disability, the statement of need, and the exact cost of what you need (which you need two quotes for each item, yeah they didn’t mention that on the website either). Now you are met with even more bureaucracy as you try to figure out why you weren’t approved for the full amount. The fact that classes start next week and these things were needed already. You are now faced with the reality that you may not get them at all.

It is hard to fight a system that knows all the rules and only informs you of them piecemeal when you break one.

It isn’t entirely surprising that the Canadian government won’t replace broken or obsolete technology. They are already skeptical  that disability itself can be permanent. I have in my dealings with them had to reprove my permanent disabilities countless times. The government seems to think that people miraculously recover. Forcing disabled people to waste time doing the same thing over and over.

This is best exemplified in this rant by Rick Mercer on benefits for disabled veterans.

It should be noted that in the case of veterans, the Canadian government now believes that miracles only occur every three years and have extended the length between required reproof by veterans to that time frame.

Under this system of miracles it is not difficult to understand that the government does not understand that computers break and that software becomes old and obsolete (or does not upgrade the way they want it to) necessitating repurchase.

Putting those kinds of limitations on disabled students effectively limits or can limit how much education that student can get. If the technology they received during their undergraduate degree is no longer suitable when they reach graduate school, it may affect their ability to continue in school.

Yet available information on this grant only hints at restrictions with phrases like “eligible students may qualify” and focusing on the high amount of the grant and making it seem that the help will continue by saying the money is available each year, giving the impression that you can apply for replacements.

Making the policies available or even summarizing the most common things that come up would go a long way in helping applicants tailor their applications for maximum success.

Keeping them secret makes it seem that the government doesn’t want applications to succeed or make the appeals process to onerous for applicants.

Completely erasing the fine print hurts disabled students while allowing the government to appear to be offering more aid than is actually available.

A Media Guide for Nondisabled People Talking About Innovations for Disabled People

Recently, I have written two articles on problematic media coverage of innovations designed for disabled people. The first was on the viral support among predominantly able-bodied people for a stair climbing wheelchair and a standing scooter. The second about Nike’s supposed shoes for disabled people which are actually only available in men’s sizes. In both cases none of the products being talked about are looked at critically so their flaws or limitations are never exposed.

These stories just become part of the able-bodied saviour genre of inspiration porn and inevitably do more harm than good because it leaves people who are unfamiliar with disability issues with an inaccurate assessment of what barriers still exist and the limitations on existing innovation.

I have therefor decided to provide a guide to talking about innovations for disabled people that will allow media creators to be more objective and hopefully limit the harm done by lazy inspiration porn inspired journalism or content creation.

I will use the two stories that I have already covered to show where more questions needed to be asked and more information given.

The first and possibly most pointed criticism I have of these kinds of stories is the framing. These are rarely meant to be true news stories. They are intended to be feel good click bait. This framing does not lead to a critical engagement with the content because such engagement might interfere with the intended warm and fuzzy feelings the viewer is supposed to have.

This is a problem of inspiration porn generally and it is harmful. The stories that impact disabled people’s lives should be told and they should never be diminished to the story that poses a balm to all the other bad news that surrounds it.

Doing that is both dehumanizing and perpetuates harmful stereotypes about disabled people which does not lead to warm and fuzzy endings for the subject of your feel good moment. (for more on the issues of inspiration porn go here and here)

A good way to gauge whether a story about disability is news worthy is to ask these two questions.

  1. If the subject of this story was replaced by a nondisabled person, would this still be news? If the answer is no, then you may want to reconsider it.
  2. Who is the target audience, is it everyone (this includes disabled people) or is it meant to appeal predominantly to nondisabled people? If the latter you should definitely think twice before running with it. If you are unsure, you should consult with disabled people to see how they feel about the story (the plurality of people is really important here)

Disabled people need to see stories that impact their lives in mainstream media. It is useful in both showing that media understands that the disabled experience is part of the broader human experience. Telling disability stories well also gives a more accurate representation of the disability experience to those who don’t live it, so disability stories can and do have universal relevance. They just need to be told in a more critical way.

In this article, I’m dealing specifically with how to cover innovations and technology but these ideas should be applied to all media coverage of disability.

Once you have determined that you do not want to ad another piece of retrograde inspiration porn to the world and that your story has actual merit. How do you do that story justice? The answer is ask questions. Don’t just accept the first answer.

Take the story about the Nike shoes which were widely glorified as shoes for disabled people. People who wrote about this story should have asked the following questions.

  1. Are these shoes really available to all disabled people? Look at different conditions that might require specialized footwear, is this shoe as universal as advertised. Are these shoes available to men, women and children?
  2. Does this shoe accommodate the orthotics that are common among disabled people? Things like heel lifts, AFOs, or Bioness sensors.
  3. Ask why any limitations found from the first two questions were not addressed by the company.
  4. Ask if the company plans on addressing these issues.
  5. Ask why a single company is addressing this issue.
  6. Ask other companies why they aren’t providing specialized shoes.
  7. Does a company providing a long overdo product deserve to be treated as heroic?
  8. Does the limited useability of their product indicate that the company was genuinely trying to help or just get good press?

In reality these shoes were only available in men’s styles and sizes which means that anyone who doesn’t fit those sizes cannot benefit from them. This adds up to the majority of disabled people as men and women with smaller feet as well as children were entirely left out. Nike however, still got a lot of great press and was positioned as a hero. I found no mainstream criticism of the limited usefulness of the shoes.

Attempts to engage with people who created these stories either resulted in no response or an acknowledgement but no change in content.

I did successfully get a response from the person who curated this Upworthy post on the Nike shoes.

She acknowledges the limitations but didn’t change or remove the story from Upworthy. It still has quotes like,

Nike proves that you can create a product designed for the needs of a smaller community that has mass appeal as well.”

The reality that Nike failed to deliver on its universal claims and instead only serviced a very small portion of the disabled population, isn’t really in line with Upworthy’s standard of feel good or inspirational blurbs. It is however disappointing that they would leave the story in its clearly inaccurate state even when faced with that inaccuracy (the fact that this story is blatant inspiration porn and that Upworthy is a huge purveyor of disability inspiration porn is another post altogether).

In the case of technology like stair climbing wheelchairs and standing scooters, media creators should be asking questions like,

  1. Is this  invention going to be marketed or will it stay a university engineering project?
  2. If this device is marketed who will be responsible for paying for it.
  3. Does this device answer the needs of everyone who has difficulty climbing stairs/navigating narrow corners?
  4. Is this really the the best and most comprehensive way to address physical accessibility barriers?
  5. What the the popularization of these devices mean for people whose barriers to access are not addressed by these devices?

These questions are far from comprehensive but they are a good start in contextualizing innovations for disabled people. Using them as a spring board for your story will help you have a more nuanced and realistic representation of the facts and their actual impact.

I will conclude with one final and utterly crucial piece of advice.

Always include the voices of actual disabled people, free from the spin of business advertising. Don’t just have people who talk about disabled people and the impact a given product will have. Ask actual disabled people. The wider variety of disabled voices you get, the better.

When You Hate the Marketing for an Assistive Device that Might Actually Be Useful, a Sort of Review

If you watch ads for electronic walking aids like the Bioness L300 or the Walkaide, you will come away with two distinct impressions. First that being disabled is the worst thing to ever happen to anyone and must be negated regardless of the cost. Secondly that the advertised product is a magic bullet that will solve all your problems.

Both of the devices I mentioned treat foot drop. A condition I have as a symptom of my cerebral palsy. Most people with foot drop deal with the effects (which can include increased risk of falling, spraining ankles and general difficulty walking because the heel doesn’t lift on its own) with a leg brace known as an AFO.

AFO’s are often just solid plastic that keep the heel rigid so that when you walk, the heel hits the ground first rather than landing flat footed or toe first. AFO’s are not particularly comfortable and contribute to muscle atrophy as they do not allow for muscle movement. This means that if you aren’t wearing it, your risk of tripping or worsening your gait increases.

I myself after wearing my AFO regularly for months rolled my ankle so badly it was sprained for a year on an occasion when I wasn’t wearing it. Now I try to balance my time in the brace to avoid that level of muscle atrophy in the future. I still however have drop foot and have of late been stubbing my toes a lot lately while not wearing my brace (twice to the point where my toes bled). I would love to get rid of my AFO and devices like the Walkaide or Bioness may allow for that.

Both devices use electrical pulses to raise the foot while the wearer is walking. Bioness by placing a sensor in the heel of the shoe which alerts the device to stimulate the muscle when the heel is lifted. Walkaide uses the movement of the knee as a guide. Both devices are worn just below the knee. Unlike the AFO these devices are therapeutic in nature and build muscle in the wearer. For some, after enough use, the device may become unnecessary after enough muscle and brain training take place depending on the reason the device was prescribed in the first place and the condition’s complexity.

I became aware of the Walkaide several years ago, around the time I got my first AFO. I was intrigued and my Physiatrist suggested that I would be a good candidate for the device but that it wasn’t covered by Saskatchewan insurance. The cost she estimated would be around $5000.00. As I didn’t have anywhere near that kind of money I quickly decided not to pursue it but I was curious, so I looked it up online.

I was entirely sickened by the advertising that the advertising that the company produces. My initial source was this video which looks at how the Walkaide is used by someone with cerebral palsy.

The framing of cerebral palsy is grossly offensive. It is in so many ways made worse because the person doing the framing is the parent of the user.

The child’s mother describes the grief associated with having a disabled child and the feeling of loss for the imagined nondisabled child she never actually had but only expected to.

While I can understand having these feelings, considering the way our society views disability. I cannot fathom why any parent would express them publicly where their child will almost certainly see it and know that in their parent’s eyes they are broken. The fact that the Walkaide is framed as “fixing” the child only adds to the offensiveness.

I would be devastated if my mother so much as uttered such a statement. If she did so publicly to sell a product, I would feel completely betrayed.

There are other problematic points in the video but this is by far the worst.

All of the other videos feature adult users and are better because they at least can consent to how they are portrayed but still problematic. You can view the entire series here. My issue with the other videos is mainly in the framing of disability as the ultimate tragedy and then framing the Walkaide as some kind of miracle cure.

I would like to highlight the overview video which is made up of clips of all the others for one big reason.

In three cases where they highlight testimonials. The testimonial is not coming from the user but from a parent or spouse. This suggests that a disabled person should consider the expense not just for how the device might help them but to keep them from being a burden on their loved ones. It’s a way to make people feel guilty and that they are burdens. This is unacceptable. By watching only that video, you may not even guess that the users themselves are capable of opinions.

In all the videos at some point or other, the user or family member speaks about how worthwhile purchasing the devise is. In one, a person even says it is worth more than the actual cost (so the company is doing you a favour by not actually charging more). They plead with the viewer to find some way to afford it.

Oddly if you go looking for a price tag you won’t find one beyond the odd estimate on message boards. Even the price I quoted above was a guess by my doctor.

I more recently became aware of Walkaide’s main rival, the Bioness L300 at a routine check-up from my physiatrist. It has been several years since the two devices became available and Saskatchewan insurance now covers the Bioness (though not the Walkaide). I was prescribed a trial of the device.

I of course went home and did some research. I was again disappointed.

Again there is the disability as ultimate tragedy narrative. This time set to sad music with dramatic narration, Again it positions the device as a miracle cure.

Bioness doesn’t line up a bunch of videos on its website but you can find quite a few on Youtube.

I think both Bioness and Walkaide have forgotten that they sell medical devices that have actual benefits for certain people and not the latest snake oil faux treatment.

I don’t like feeling conflicted about accessing a therapeutic device because I feel like doing so also comes with having to overlook my discomfort with their deeply offensive marketing.

I have gone ahead with my Bioness trial so I will provide as objective a review of my experience of the product as possible. Most of my observations can only be applied to the Bioness and not the Walkaide (though I am told by people who have trialled both that the sensation of the electric stimulation is the same). I hope that this can cut through the bullshit and bring the narrative back to the actual medical uses of the device, devoid of the miracle hyperbole that is used as a marketing strategy.

First Impression

The first thing that happens during the initial fitting is the calibration of the electrical stimulation. My reaction to that was pain. You need to be aware that electrical stimulation is not comfortable. It is not a pleasant buzzing. It hurts. Ig=f you have low pain tolerance, this is not the device for you.

As you walk around, you do get used to the pain but it is always present and you are aware of it.

Because the Bioness works on a heel sensor, if you are standing still and shift your weight you will get a shock. That shock will continue until you fix your stance (this shock is startling and I’ve embarrassed myself in public already). I learned that if you are standing still or walking intermittently (like if you’re shopping) it is best to turn it off.

Impressions of benefits

That being said, I have seen marked improvement in my walking, particularly going up stairs or walking on uneven ground. I no longer end up walking on the edge of my foot on uneven ground. I have also already noticed the impact on my ankle and calf muscles. While it is to early to see results, I can definitely feel muscles being used that have been mostly dormant since I started using an AFO.

The Bioness works for me though I have heard anecdotally from medical professionals that just because you have a condition that can be treated by the device doesn’t mean that it will work for you. One person I spoke to claimed that as many as 50% of trials fail.

So like any other medical device it has its pros and cons. improve muscle strength and

If it works, it does noticeably improve walking and a feeling of stability. It also deters muscle atrophy but that comes at the cost of comfort. The electrical stimulation isn’t fun  and it will be a while before I think I can tune it out completely. Sometimes it is downright distracting even if the current is at a tolerable level.

Ultimately for me the benefits are worth the negatives but the only reason I am even considering it is because it is covered by government insurance. If it wasn’t, I would walk away in a heartbeat.

If we assume that my doctor’s estimate of $5000.00 is correct, I can think of things I would rather spend it on if I had to make that choice.

I could pay two semester’s tuition or pay four months rent plus groceries. Both of which are more tied to my quality of life than being able to retire my AFO.

These devices are not miracles and they need to stop marketing them as such. They need to focus on their actual risks and benefits while recognizing that disabled people’s priorities should not be solely focused on their conditions but broadened into realizing that people really do need to pay rent. People shouldn’t be guilted into buying something that they can’t afford.

An electric orthotic isn’t helping much if you have nowhere to live and no food to eat.

AFOs may not have as many benefits but they are more widely compatible with people and they are considerably more affordable.

I remind you again these are medical devices. People deserve to make informed medical decisions so the risks and rewards of all available options should be presented objectively and the costs should never be hidden until after that decision is made.

I beg the makers of both Bioness and Walkaide to do better and to be more respectful of the people they are marketing to.

When Celebrating Accessible Technology is Just Reinforcing Ableism

So this video has been popping up on my Facebook news feed a lot lately.

It’s a video demonstrating a wheelchair invented by Swiss students and it’s a wheelchair that can climb stairs.

Now I know that stairs are a major physical barrier to wheelchair users and I have no issue with any technology that addresses those barriers. I however find the support of able-bodied people for technology like this troubling.

Viral excitement over adaptive technology seems to be directly connected to whether or not it challenges the social aspect of an inaccessible society. People are all for increased access so long as they don’t have to do anything about it.

It reminds me of another mobility device video that was being widely shared primarily by able-bodied people with the video caption “Making Wheelchairs Obsolete”

The 9 1/2 minute video details the uses of the Tek Robotic Mobilization Device which is basically an upright version of an electric wheelchair. It is specifically designed for people with paraplegic paralysis and isn’t really suited for wheelchair users with other conditions. The video however talks about how users of Tek can get around spaces that are inaccessible to wheelchairs like narrow store aisles. The device is also only really functional indoors with its low to the ground base incompatible with anything but a completely flat ground. Yet whenever I came across this video on Facebook it was always in terms of making wheelchairs and by extension the accommodations associated with them obsolete.

People love the stair climbing wheelchair and the standing scooter because they think it fixes the accessibility issue caused by a lack of ramps or elevators without actually having to install ramps and elevators. The perception is that the problem is solved without any change to society or the environment.

The happy “Look problem solved” mentality is however short sighted for many reasons. Primarily the reason that these devices are not suitable for all people with mobility impairments. Different wheelchair users have different mobility device needs that may not be met by either device. People with mobility impairments who don’t use wheelchairs may also need additional space to maneuver or ramps. The celebration of these kinds of technology show a very narrow understanding of what disability is. In the case of the Tek device, it is only useful indoors so an alternate mobility device is required outdoors.

Secondly for those these devices would help, able-bodied people ignore the cost of these devices and that in most cases that the cost would be shouldered by the disabled user. This essentially assumes that it is ok for certain people to have to pay a price of admission while others do not.

Third it assumes that it is ok to always put the burden of change on disabled people rather than deal with the reasons that accessibility isn’t already the norm. It positions the disabled body as social space where others can enact changes to mobility instead of making the actual social environment more mobility friendly. This ignores both the autonomy of disabled people and the fact that many of us don’t want to be “fixed” either by cure or imposed treatment.

Finally by so clearly associating an accessible environment to disability (therefor rendering it “other” and undesirable) people ignore the universal benefits of an accessible environment. Ramps are useful to people pushing strollers or carrying heavy objects. (for more on the last two points read Emily Ladau’s piece on why it is better to change the environment than people).

Yet this mentality that it is both easier and cheaper to as one person responding to my criticism on Facebook put it “Because it’s vastly cheaper to put shoes on people than to cover the entire world with carpet.” I’m not sure anyone has actually done the math on how much it would cost either to provide all disabled people with various mobility aids vs. Making public spaces accessible. I suspect he might be surprised at the outcome as a single ramp benefits everyone who uses it while a specialty wheelchair (that is likely expensive) benefits only a single person. It also just maintains the idea that if disabled people want access to the world we exist in, that we should have to jump through hoops that don’t exist for everyone else.

The more just solution is to remove the hoops altogether and not make ability to participate contingent on changing the oppressed group so that the oppressor never has to change but can feel like progress has occurred.