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.

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Nike’s Shoe for Disabled People Doesn’t Include Disabled Women

A headline from People proclaims “Nike’s New Sneaker Will Solve a Very Important Problem for People with Disabilities“. Similar headlines can been found from USA Today, Huffington Post, Glamour, and so many more. Another key article title  comes from theshoegame.com it reads “Nike Designs Flyease to Improve the Quality of Life for Disabled Athletes“.

All of these articles are talking about Nike’s new FLYEASE technology which allows a person to put on a shoe by opening the heel and just sliding their foot in and closing the shoe around the heel. The new design removes the need for laces. So for those of us with hand dexterity issues, shoes using this technology are a breakthrough.

I have been seeing the articles about the shoes, Nike FLYEASE Zoom soldier 8 everywhere around the internet for the last few days including on blogs specifically devoted to disability issues.

Most of the press around the new shoes includes references to Nike’s mission statement which includes the line “If you have a body, you’re an athlete”. Which is a great sentiment. Too bad it took Nike this long to include disabled people as a targeted market.

All of the run up marketing for the shoe’s release today has had a focus on all disabled people and includes this video from Nike explaining the inspiration for the shoe and why it’s important to include disabled people.

The video talks about both a Nike employee who had a stroke and a young man with cerebral palsy. Both of whom were instrumental in having Nike design the technology and having them bring it to market. The video is very clear about the wide ranging applications for shoes like this. Designer Tobie Hatfield says “it’s not just about stroke victims. It’s not just about cerebral palsy. It’s about all of it and thus the FLYEASE technology”

The language surrounding the technology and the shoes is so universal that you might believe it when they say disabled athletes or people with disabilities. I did.

I waited for today (the official product launch and googled Nike Zoom Soldier 8. I found them at Footlocker, they seem to be selling well as many sizes are already unavailable (or they just seriously understocked).

The problem, they are only available in the Men’s section. There is no corresponding design for women. So when they were talking about people with disabilities and disabled athletes. They really meant men with disabilities.

I thought that I must be mistaken so I searched for FLYEASE and women and got nothing. I went to shoe websites and searched new Nike arrivals for women and still no accessible shoe for women.

The product news announcement on Nike’s website doesn’t mention a separate launch for a women’s version of the shoes. Just a lot of talk of including disabled people even though women don’t seem to be included.

So if everyone with a body is an athlete. What about disabled women’s bodies? Do we get shoes too? Or was there some mistake and I just haven’t found them yet?

Seriously Nike, let me know.

Update:

I e-mailed Nike about this and their response so far boils down to “we’re looking into it”. If I get anything more concrete I’ll update again.

How University Professors React to Requests for Disability Accommodations

Requiring accommodations in post-secondary education can be complicated to maneuver through. I have had experience with the bureaucracy of asking for accommodation at three separate universities and my experiences have been mixed at all of them.

Most universities in my experience have similar policies around delivering accommodations to disabled students. The process goes like this.

1. Get all the necessary documentation to prove you are disabled and in need of the requested accommodations.

2. Draft a letter to all potential professors outlining your individual needs.

3. Send copies of the letters to potential professors and you.

4. Have you approach professors individually to discuss accommodations and acquire their consent.

5. You and your professor sign the letter indicating that they agree to provide accommodations

6. Send copies of the letter to the academic department and the Accessibility Office.

7. Professors provides all pertinent accommodations to their course.

8. Never follow up with you or the professor fails to submit the letter to the necessary people.

The system is based in the idea that self-advocacy is important for disabled students and this is true to an extent. People need to know not only how to make their needs known but also that it is ok to make those requests. What the system  fails to do is recognize and address the inherent power imbalances at play in accommodation requests. The professor has significantly more power. They control the student’s grade and learning experience so if a needed accommodation is refused, a student might not feel comfortable reporting it. Particularly if the course is required for the student’s degree (unfortunately some required courses are only taught by one person so the option of leaving isn’t available). Even if the student decides to complain, there is no guarantee that the university will address the issue.

So for the benefit of both universities and disabled students I will describe professors in terms of how they respond to accommodation requests (I haven’t experienced them all personally but where applicable I will give personal context and outcome).

The Good

1. The professor who not only accommodates but troubleshoots to make the learning experience a good one.

I had a professor who not only unreservedly provided my needed note taker and made sure the notes were good but also gave me copies of her power points which she did not usually distribute which helped keep the notes in context.

2. The professor who accommodates

These professors happily accommodate as required with no other follow-up.

The Middle-Ground

3. The overzealous professor

I don’t need all my accommodations all the time. Usually indicating that a particular accommodation won’t be necessary for a given glass is sufficient. I one instant though, I had a professor insist that she must not only provide all my accommodations but she also felt they required stricter implementation. I didn’t need a note taker but she insisted that I would have one. Usually a note taker is just another class member who provides copies of their notes either via e-mail or carbon copy. This the professor insisted was not sufficient. She needed to hire me a grad student. Remember this was for an accommodation I didn’t need.

I felt that this would draw unnecessary attention to me so I had the Accessibility Office send her an e-mail confirming that I could in fact decline my accommodations if I saw fit. She calmed down, I Aced the course.

4. The professors who accommodate during the course but fail to make sure that accommodations are available during exams.

I had a class in an auditorium which features only partial desks, with so little space, I couldn’t juggle all my course material with my one good arm. During the semester I was provided a table and chair. I was assured that it would be available for the final exam. It wasn’t and I was forced to choose between writing on the inaccessible desk or delaying everyone while the professor tried to fix the situation at the last moment. I chose the first option and had a very uncomfortable exam experience.

After that I began writing exams separately but even that was problematic as separate exams still need to be supervised. I once had a supervisor be 40 minutes late and when he arrived, he realized that he had forgotten the exam.

These professors are good intentioned but fail to make sure that the accommodations they are responsible for are actually provided.

The Bad

5. The professors who agree to accommodate but have some personal issue with bureaucracy of the university and don’t want to sign and submit the necessary letter.

The scene: I am alone with the professor in the office, my accommodation letter is out and we have discussed my needs

The professor “I have no problem providing these accommodations, I also think that it is unnecessary to tether students to these forms. I don’t think it’s really necessary to fill out the form, make copies and submit them”

Now I’m stuck in an awkward situation, I can agree and move forward hoping that the professor will honour their stated intention to accommodate or insist that they honour the bureaucratic process and leave the impression that I think they’re dishonest. Not a fun situation. I’ve had this happen a couple of times. I never felt comfortable insisting they sign the form, I was lucky in that they did honour their word but it was unnecessarily stressful.

6. The professor who agrees to accommodate but doesn’t like the standard mode of accommodation. They promise to provide the accommodation in an alternate format, they don’t. Or just agrees to accommodate and then doesn’t

I had a professor who for some reason didn’t like the standard note taking procedure of providing the note taker with carbon copy paper (this allowed them to take a single set of notes and provide the professor with the disabled student’s copy right after class). He promised I would get my notes but was vague on how that was going to happen. Turns out he gave the same line to two other students. We had to harass him for 6 weeks (half the semester) before he got us copies of the notes.

7. The professor who suggests that you should repeat the pre-requisite course before continuing.

On the first day of class about 10 minutes before it was supposed to begin, I told a professor that I was disabled and asked if we could set up a time after class to discuss accommodations. The classroom was already mostly full but she pulled me out of the room into the far from empty hallway and proceeded to tell me–with no context of what my needs were–that it would be in my best interests to repeat the pre-requisite class I’d already taken and excelled at. She specifically cited my disability to justify her suggestion.

I sat through the class in shock. After it was over I reported the incident to the Accessibility Office. They said there was nothing they could do and defended her by saying “She probably doesn’t know any better”

I dropped the class.

8. The non-accommodating professor

I have never had a professor refuse to accommodate outright though the last example might count as I didn’t continue with the class it’s hard to tell. I have heard many stories of professors refusing accommodations for a number of reasons like

  • providing the accommodation infringes on their academic freedom
  • they think they know the student’s needs better than the student (refusing to use a microphone for a hard of hearing student because they don’t think it will be a problem in the classroom space)
  • They are concerned about their privacy (refusing to let students audio record lectures)
  • I’m sure there are many others

Universities tend to work on a reporting system so if something goes wrong, students are put in the position of reporting the bad behaviour of people who have power over their academic success. Often the response is to do nothing or fall back on the mantra of “self-advocacy” but effective self-advocy is difficult in a situation with such a huge power imbalance. The situation has to be dire before the university will step in and the first step is usually mediation. As a result many students simply do not report professors who refuse to accommodate out of fear of alienating the person in charge of grading their work.

Self-advocacy works great with people who are receptive to the requests. In cases where there is dissent the power swings in favour of the professor. While this is an issue that is difficult to remedy a good start would be to check in with professors who don’t submit the paperwork as a matter of policy. This way they have to explain themselves without the student having to report an issue. The professor then can’t blame the student for being held accountable.

This doesn’t address all of the issues like professors who submit the paperwork and then don’t follow through but it is a start. To fix the other issues there needs to be a real cultural shift in academia that normalizes the reality of people who learn differently.

The Joy of Shoes that Fit: Fashion and Disability

2015-07-08 15.15.25

I have never owned a pair of truly pretty shoes. All of my shoe purchases are generally based on whether the shoe works with my various orthotics or if I’m going for a dressier shoe (because I have yet to find a pretty shoe that works with even the least invasive orthotic) will they stay on my feet. This has left me with runners for day to day and casual (almost exclusively black) Mary Janes for when I need to dress up.

I have been wearing some version of this type of shoe to every formal event for my entire life.

I have been wearing some version of this type of shoe to every formal event for my entire life.

Shoes are the stereotypical feminine obsession. Chickflicks are full of characters who either have copious amounts of shoes or are lusting after a particular pair of inaccessibly expensive pumps in the store window. Brands like Jimmy Choo, Chanel, Miu Miu and Gucci are commonly mentioned with reverence. While these fictitious portrayals often exaggerate reality, there is a very real social expectation that women will wear pretty shoes.

It is not at all uncommon to see women wearing heels or ballet flats for everyday activities. These shoes are either notoriously uncomfortable (heels) or provide little support for the foot (flats). Stylish shoes are not only meant to be worn to special events or occasions but are often expected in day to day life. Some employers expect their female employees to wear heels. Though there is push back against those expectations.

Shoes are a fashion statement and it is very common to see women going their entire day wearing ballet flats or heeled boots.

I can’t wear either.

Day to day I am either using either my AFO

My AFO

My AFO

Or if I don’t know how many stairs I will encounter a pair of shoes that can accommodate my custom orthotic that compensates for the difference in my leg lengths

I had to get D width shoes to accommodate my AFO despite my B width feet and the fact that I only use an AFO on my feft foot. When I am just using an orthotic lift, I can get shoes of the appropriate width but my left foot is significantly smaller than my right so no matter how I shoe shop I always have one foot that is swimming in to much space (I can’t afford t buy two pairs of shoes to accommodate the difference). With runners, it is generally possible to tighten the shoe sufficiently to make a single pair work.

When it comes to formal or just more dressy events I have to forgo orthotics for the duration if I don’t want to have clunky runners paired with my nice dress. I am ok with this as these events are not frequent. One day or a few hours without orthotics every month or so is manageable–I rebelled when my job at a department store required black dress shoes and wore black runners instead–but finding dress shoes that fit is its own kind of hell.

I can’t wear heels (I would end up breaking an ankle) and flats just fall off my smaller foot. So I have been stuck with Mary Janes (flat shoes with an ankle strap). Even then I run the risk of rubbing the ankle of my smaller foot raw if the strap isn’t snug enough. Add to that the fact that my smaller foot has for the last few years been swelling in hot weather and dressy shoes are just a recipe for pain and discomfort.

So when my sister asked me to be a bridesmaid at her wedding this summer, my main wardrobe concern was the shoes. Luckily she left the choice up to the individual rather than restricting style or colour which would have made shopping a nightmare. It’s hard enough finding serviceable shoes as it is without adding restrictions. Although being unemployed I was dependent on my mother to purchase the shoes for me (she is a notorious bargain hunter).

Ever since I discovered the online marketplace Etsy, I have been obsessed, though generally from afar. I was particularly interested in the shoe makers who offered custom fit shoes. They have always been well out of my price range but I coveted them.

For the auspicious occasion of her daughter’s wedding and my role as bridesmaid, my mother (with much trepidation) agreed to buy me a pair. I selected a cute pair of oxfords. They are dressy enough for the occasion and cover enough of my foot so that the leather won’t dig in if my foot starts to swell at my sister’s outdoor wedding.

I sent them my foot measurements and e-mailed them scans of my feet so that they could tailor the shoes to my individual feet.

Just over a month later after a minor postal hiccup (the delivery person tried to deliver the shoes to a house across the street), they arrived and they are amazing.

Shoes as they appeared in the box

Shoes as they appeared in the box

Shoes with sole visible

Shoes with sole visible

For the first time in my 28 years, I have a pair of shoes that fit me perfectly (you can’t see the size difference in the photos. They are also the prettiest shoes I have ever owned.

me wearing the shoes

me wearing the shoes

I can’t fully explain how good it feels to finally have a pair of pretty shoes that match my personal style, rather than a pair that fits poorly and only barely qualifies as a dress shoe.

These will be my go to shoes for formal events, job interviews or whenever runners just won’t do until they fall apart (which I imagine won’t be for a while because they are really well made) or the shoe industry clues in that disabled people want pretty shoes too and that maybe, they should start catering to our needs instead of making us constantly make do with what little is available to us.

Why I am Trying to CrowdFund my PhD in Disability Studies

I was fortunate to be able to complete both my undergraduate and masters degrees with relatively little financial difficulty. Cumulatively, I accrued less than $5,000 in student debt. I was able to cover the rest by working and the odd scholarship and bursary. With this history in mind, I entered my gap year between my MA and PhD with optimism. I even imagined being able to pay off my existing loans and starting my PhD with a clean slate. It was not to be.

I initially tried to find work in Toronto because I knew it was the most likely destination for my PhD , either continuing in Disability Studies at York University or pursuing Sociology at the University of Toronto (I have been accepted into the PhD program at York). I sent out dozens of job applications to no avail. I eventually ran out of money and had to return to Saskatchewan in the interim and stay with my mother.

I continued my job search from Saskatchewan while maxing out my credit card on PhD application fees. Here I had a little more luck in that I actually got responses to some of my seemingly unending applications. In one case a local government branch tantalized me with possible work if I could pass their proof of clerical ability tests. I passed all the tests but only gained a place in a database with the dozens of other successful test takers. The province had also instituted a hiring freeze so the jobs available to the database pool were beyond few. I didn’t get a call.

Then, I got an interview with another government agency, for a client services position. The kind that requires a thorough security clearance. The clearance portion of the interview process was to be completed first. I filled in and submitted the 48 page questionnaire and related permission forms and waited.

Several weeks later, I received confirmation that my clearance had gone through and invited me for an interview. The interview request was accompanied by another request asking that I confirm my willingness to submit to a typing speed test and affirm that I was confident in my ability to pass it.

I’m hemiplegic, I type one handed so typing at high speeds is well out of my skill set. I was however confident that the position I had applied for did not require high levels of typing as it was more face to face client oriented. Computer use would be part of it but extensive typing would not. I responded saying that I was available for the interview but that I would be unable to pass a typing test because of my mobility disability. The response was swift and pointed.

“This position is 100% data entry at high volumes. No accommodation can be made in this instance. I will keep your resume on file if something better suited to your skills becomes available, I will contact you”

Translation

“How dare you apply for a job that you are entirely unqualified for, you will never work for this organization”

I was floored. I went back to the original job listing to see if there was any way I could have misunderstood it. It had had responsibilities like; process client document requests (basically look up the form and print it out), research freedom of information requests, and provide relief for the central client relations desk. None of these tasks can be performed in conjunction with continuous data entry (I’ve done data entry, it’s all consuming). Nowhere in the job description were the words data entry or any task that so much as suggested extensive typing.

I responded to the employer e-mail expressing my confusion and including a link to the original job listing.

The response I got was full of over the top apologies and a claim that they had gotten confused about which position I had applied for. I was of course qualified for the position I had applied for and been offered an interview to and was welcome to interview.

At this point I knew I would never get this job, No HR rep wants to hire someone whose application is tinged with discrimination. I however wasn’t in a position to turn down an interview, so I went and was interviewed by the very same individual who had been involved in the e-mail exchange. It was the most awkward job interview of my life. I didn’t get the job.

The next job interview I was offered was cancelled two days later because the position funding fell through.

My final job interview that initially looked promising took a swift turn to the wildly inappropriate when one of the first questions I was asked by the middle aged male interviewer was “If we had to travel for work, would you be comfortable sharing a hotel room with me?”. I was shocked and very uncomfortable. We were alone. I stammered through an ” I guess so” (because I didn’t feel comfortable saying no in that context). Then he showed me where I would be working. It was a basement where we would be the only two people working.

I left the interview really uncomfortable and freaked out. I was offered that job but the little money I would have made was not worth the safety risk. I turned it down.

Now it is less than two months until I return to Toronto and finding a job is no longer a realistic goal. My Go Fund Me campaign has been active for 18 days and I have had no luck. I can’t rely on family for the money as they are not in the financial position to assist me.

I goal is to get as much as I would have made if I had been able to get a summer job. Just enough to handle moving costs and initial expenses like tuition and rent.

Please share my campaign.

Kim’s PhD Fund

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.

Dear Parents of Disabled Kids: Please don’t Share Videos of Your Mostly Nude Children

I want to preface this with an assurance that this piece is not moral posturing. I will not be suggesting that sharing images of very young children is in any way sexually deviant or even that the viewers of those images are doing so for any reason other than to learn about your child’s development and to find solidarity and understanding with other parents or children.

This is in response to a video I saw shared on the Facebook group Cerebral Palsy Worldwide. It was not originally posted there and there is no way of really knowing how far this video will be shared or viewed.

The video in question is of a rehabilitation session featuring a young girl (likely under 5 or 6). The girl is dressed only in her underwear and is learning to walk using a walker. I will not post a link to the video because I find these sort of videos being shared publicly problematic.

I understand the point of the child’s state of undress. It is easier for the doctor or therapist to see the child’s movement clearly so that they can better judge progress and suggest improvement. I even understand taking video as it helps on an individual level to keep track of progress and past therapies. To a lesser extent such videos can help in an educational capacity, showing physiotherapy and medical students both technique and familiarizing themselves with the way certain disabilities manifest before they are given access to patients.

Even then I would counsel parents to be cautious about giving their permission for video to be used in ways that are not directly related to the care of their children. This is primarily because these videos while informative can serve to dehumanize the children in them both in how they are portrayed and in the way the images are used.

For most children, nudity is not an experience associated with medicalization. Children are frequently naked for many innocuous reasons like bathing or from a simple desire to play naked (most of us have been there). Yet there are specific boundaries placed on children and nudity that they internalize even if they ignore them like the appropriateness of time and place and context. Running through the sprinklers is fine as is bath time but nudity and closeness to strangers is taboo.

I was aware of the distinction and was often uncomfortable during my annual check-up with the orthopedic surgeon when I would have to walk around in my underwear so that the doctor could check my gait, hip alignment and leg length discrepancy. I was keenly aware that under other circumstances that this situation would be considered deviant. My only indication that this was somehow an exception was that my parents remained nearby.

Children don’t function well with undefined exceptions. They may accept them but uncomfortably. Having a record of how their experience differed from their peers only adds to that discomfort. Something is different about you, the rules are different but no one explains why. The idea of a video of that separateness being uncontrollably circulated is cringe worthy as it so starkly differs from images of children shrieking with glee as they run through sprinklers.

It tells you that your body is somehow inherently different. You don’t get to experience the world the same way. Our bodies are not deserving of the same respect and deference. Instead our bodies are free to display to any and all even when we are at our most vulnerable.

We are not seen as happy playful children but instead as patients and exhibits for study.

I understand the impulse to share knowledge and experience with people in similar circumstances but this is a time when it is far better to use words rather than pictures. Even though having a disabled child can often feel like a public event please try to keep their actual medical lives private.

If you are approached by a medical professional who wants to show videos of your children for educational purposes.  Make sure that the images are used only in classrooms and are not made public.

If you want to educate more widely and feel that video is the appropriate medium, try to show more than just the medical side of your child. Give context. And above all choose the clips carefully so that if your child finds them later on, that they don’t feel alienated by how they have been publicly portrayed.