Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives

Labels

Image Description: a hand places disability label cards onto illustrations of children. Still taken from video in post.

Yesterday, on Twitter someone shared this video and asked me for my thoughts.

Video description: A mostly unnarrated video in which a pair of hands puts labels on illustrated jars like jam, peaches, pickles etc. Then the hands start labelling drawings of children with intellectual disability, gifted, autism, learning disability, ADHD, Tourettes, cerebral palsy and Down Syndrome. The video ends telling the viewer that labels are for jars.

I think talking about my feelings on this needs a wider audience than the one on one exchange I had on Twitter.

I actually completely disagree with the entire video. I think it is important to give children the words to understand and describe their own experiences and that it is also important to teach nondisabled children about disability in a normalized way. I have written before about the impact of not being given the tools to talk about my experience as a disabled person.

Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity.

It depends on the idea that disability is defined entirely in medical terms. That as soon as you’ve given a diagnosis and maybe described a few of the characteristics of that diagnosis that you’ve put that person into a box.

It completely ignores the reality of the disabled experience. Experience, that may be impacted by a specific diagnosis. An experience that very likely expands well beyond it.

Not giving children the words to understand their lives is not only a disservice, it’s straight up Orwellian.

Ignoring a child’s disability in the false hope that it will reinforce some kind of normalization is just an adoption of doublespeak. If we ignore reality, then maybe people will just stop bullying and discriminating against disabled people.

In reality, it only serves to further ostracize disabled children because it teaches them they are different and talking about that difference is wrong. It’s trying to solve the problem of discrimination by having the disabled child internalize their oppression and keep silent.

It infuriates me when parents or medical professionals recommend that children not be told about their disabilities in some misguided belief that this will gift the child with a normal childhood. It won’t.

Children aren’t waiting for a label before they decide to bully a peer. While language can be used to marginalize it is not the source of the stigma. Erasing language will not erase the oppression.

I grew up without a diagnosis for my autism. The lack of the label did not stop my classmates from bullying me so brutally that I changed schools, only to find new bullies at the next school.

When I finally got my diagnosis it was liberating. Finally, I understood my experiences. I had a frame of reference to understand why I behaved the way I did and why people reacted to me the way they did.

Having that diagnosis earlier wouldn’t have saved me from the bullies but it would have saved me from the added pain of not understanding why.

Not learning to talk about my disabilities also left me at a disadvantage when I was put in situations where acknowledging them was important. Because no one talked about my being disabled, no one considered how to accommodate me. I didn’t even realize that I had the right to be accommodated.

The erasure of language doesn’t just impact disabled kids. It impacts their nondisabled peers. It teaches them that disability is a dirty word and justifies prejudices against people who have been labelled. And kids will be labelled regardless of the omission of diagnosis. It just means that the labels will be insults and slurs.

Kids are best served by being taught accurate, respectful language. Disability should be normalized not by trying to create a false framework where the disabled children are just like their nondisabled peers. This utterly ignores the very real differences in experience.

Normalize disability by acknowledging it and by respecting the realities of disabled kids. Model inclusivity and accommodation. These things cannot be done if you haven’t even taught the children how to express their realities and ask for the things they need.

Teach kids how to talk about disability

Empower disabled kids to understand and talk about their lived experiences.

Teach nondisabled kids that disability isn’t something to be ignored or overlooked.

Language and identity are complicated and children, as they mature and grow may decide for a variety of reasons that they don’t like or identify with a certain label. These language preferences should be respected but I would like to see a world where a label isn’t rejected because a child has internalized stigma and prejudice and believes being associated with it makes them less.

Give kids words. Language empowers. Denying kids words is erasure.

Remember that sometimes words aren’t just labels. Sometimes they are identities.

 

 

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Disabled Women & Sexual Objectification (or the Lack Thereof)

Today in The New York Times Opinion pages there was a piece called Longing for the Male Gaze. It is a personal account of a disabled woman’s experiences of not being socially perceived as sexually desirable. I have mixed feelings about the piece. On one hand while it is reasonably well known that disabled people are either viewed as nonsexual by default, there is very little available on the lived experience of not being accepted as an attractive, sexual being. This piece challenges that trend and does so in The New York Times.

On the other hand much of the framing of the piece is problematic. It focuses less on being seen as attractive and sexual within interpersonal relationships and more on not being treated as a sexual object. Jennifer Bartlett (the author) focuses on her lack of experiences with cat calling and other forms of sexual harassment.

This is problematic for a couple of reasons. For one it gives a lot of social power and validation to harmful social interactions. For another, the author actively plays oppression olympics between sexism/misogyny & ableism. In so doing she fundamentally fails to comprehend the very real harm that can come from catcalling and other forms of sexual harassment.

I do understand her frustration with the fact that disabled women are left out of the sexual objectification faced by our nondisabled peers. It is a catch-22 of intersectional oppression that even being denied an oppressive force usually experienced by part of your identity as a result of its intersection with disability is in fact further oppression.

That disabled women are often denied sexual objectification only shows how disability has denied us the ability  to live up to social and cultural understandings of gender presentation and punishes us by denying us not only the consequences of being sexually objectified but also of simply being seen as fully women.

That is a conversation that hasn’t happened enough and needs to.

Unfortunately, Bartlett is not starting that conversation. She instead writes almost longingly of being sexually objectified as though being seen as worthy of catcalling would also mean she was worthy of being seen as a sexual being in healthier interpersonal interactions. Unfortunately, in this she is probably right.

That however does not negate the issue of her downplaying the seriousness & real dangers of sexual harassment and catcalling. She writes,

On one hand, I know that I am “lucky” not to be sexually harassed as I navigate the New York City streets. But, I am harassed in other ways that feel much more damaging. People stare. People insist that I have God’s blessing. People feel most comfortable speaking about me in the third person rather than addressing me directly. It is not uncommon that I will be in a situation where a stranger will talk to the nearest able-bodied person, whether it be a friend or a complete stranger, about me to avoid speaking to me.

I also do understand what it feels like to get attention from the wrong man. It’s gross. It’s uncomfortable. It’s scary and tedious. And in certain cases, traumatic. But I still would much rather have a man make an inappropriate sexual comment than be referred to in the third person or have someone express surprise over the fact that I have a career. The former, unfortunately, feels “normal.” The latter makes me feel invisible and is meant for that purpose.

She does acknowledge that attention from the “wrong” men can be scary but still positions it as preferable to the erasure of the ableist interactions she does experience more frequently.

I would however argue that catcalling and sexual harassment is an erasure of the humanity and personhood of women. It can also be deadly (link to When Women Refuse a blog which collects stories of women who are either harmed or killed when they didn’t respond favourably to male attention).

Like Bartlett I am a woman with cerebral palsy. I however have not lived a life as free of catcalling and sexual harassment as she describes her life to have been. I have also experienced the stares, question, prayers and being ignored in favour of nondisabled companions. I am however not going to say that one is preferable than the other.

In every single incident of street harassment that I have experienced. I have felt either utterly dehumanized or genuinely threatened. I however cannot say that I have left every dehumanizing disability specific negative interaction feeling totally safe either.

Being a disabled woman who has experienced street harassment, I can also attest to the fact that it hasn’t done anything for my being accepted as a sexual being by society. In fact it is sometimes used to reinforce the fact that I’m generally not viewed as sexual.

As I’ve written about before, as a result of my disabilities I am not able to perform femininity to cultural expectations. This has resulted in men yelling questions like “are you a man or woman?” at me out of car windows or men foregoing the question altogether and simply loudly debating the question as I walk by.

When the harassment is actually sexually suggestive it’s threatening. Like the time I was lost in downtown Winnipeg at night and someone came up to me while I was trying to get my bearings told me I was beautiful and requested that I go home with him. Luckily when I visibly recoiled he moved on. This interaction was immediately followed by a second man who had witnessed the interaction using it as an excuse to get way to close to me in order to say “well that was creepy wasn’t it”.

These interactions didn’t affirm my femininity despite my disability. They made me terrified. The fact that I am also disabled and less physically able to run away or fight only exacerbated that fear.

So while I agree that in many ways the ability to be viewed as a sexual object is also tied to the more benign assessments on who gets viewed as a sexual being, I do not agree with Bartlett’s down playing of the harm of sexual harassment.

Sexual harassment when coupled with disability does not actually reinforce a disabled sexual identity in a culture that continues to ignore that disabled people are sexual beings. Downplaying the harm of street harassment not only erases the real harm it causes nondisabled women who experience it regularly but also ignores that some disabled women do experience it and that it only makes them less safe not more fully human.

 

I Bought a Pair of Nike’s Shoes for Disabled People, They’re Not Really that Accessible: A Review

When Nike released their heavily marketed shoes for disabled people in July of 2015, I was excited. All of the media (and there was a lot of media) proclaimed these shoes as being for disabled people. The thing was they really weren’t. At the time of their original release they were only available in men’s sizes 7 & up. This left out many women whose feet were to small (mine included). I wrote a post about it at the time, you can read it here. The shoes also didn’t come in children’s sizes. This meant that by and large the shoes were not for disabled people, they were for disabled men.

More recently Nike has expanded the line from the men’s basketball shoe to include men and women’s running shoes and children’s shoes. Selection unfortunately varies by country. In Canada where I am you can only buy medium width women’s running shoes while in the USA they also come in wide.

In Canada the selection of children’s shoes only includes basketball shoes while American children can also select running shoes.

The Canadian Nike website looks like this

Nike Flyease selection Canada

Image description: A screenshot of the Nike online store for Canada showing the selection of shoes with Flyease technology. There are five pairs of shoes. Link to website here.

The American website looks like this

American Flyease selection

Image description: A screen shot of the American Nike online store showing the selection of shoes with Flyease technology. There are ten pairs of shoes. Link to website here.

There are even some countries where the shoes aren’t available at all like Australia.

I’ve been needing a new pair of gym shoes and decided to give the Nike’s a try now that they’re available in my size. They are only available online so I had to order them. They arrived last Friday and I’ve been wearing them for the last few days to get a sense of them.

First, I’m going to discuss why accessible shoes are so important to me.

Given the fact that I only have the full use of my right hand and only very little dexterity in my left, tying shoes is a time consuming chore. It’s also a skill I didn’t develop until well after my peers. I was around ten years old when I was finally able to tie my shoes well consistently but it still takes me at leat three times as long as nondisabled people.

I spent most of my early childhood wearing shoes done up with velcro. Unfortunately, this was the nineties, long before vecro actually started being used in fashionable shoes as a result, they were generally only available in sizes for toddlers, small children and adults (designed for the elderly. There were definitely a few years when I had outgrown the available children’s options but did not fit into adult shoes.

Despite what confused people on the internet seem to think, not everyone is falling over themselves to help disabled people when we genuinely need it (see the comments where people just can’t understand why I refuse to agree that disabled people should have to ask for prepared produce in this post on peeled oranges). So I had to graduate to laces but couldn’t actually deal with them. My mother didn’t want to be constantly tying my shoes for me, so she tied them loosely so that I could slip them on and off without untying them (this was not ideal as they were not a secure fit).

I distinctly remember one summer, going to a family event for my dad’s work, where one of his coworkers thought it would be hilarious to untie my shoes, admittedly, I’m sure he assumed I could retie them but I couldn’t ans my mum, dad and siblings weren’t close by so I just started to cry because I couldn’t really go anywhere until someone retied them for me.

As a kid I would have loved shoes that were accessible and designed to be fashionable. They wouldn’t have so obviously set me apart by having to wear shoes done up with velcro long after all of my peers had graduated to laces.

But back to the Nikes. Here’s what they look like

2016-05-02 21.19.28

Image description: Front view of Nike’s Zoom Pegasus 32 Flyease running shoes. They are grey with magenta accents.

From the front, they appear like an average running shoe. The only hint that they might me different is that the laces are thin and have no visible way of adjusting them. This is because the laces are actually internally threaded through the shoes and are connected to the back zipper seen here

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Image description: rear view of the Nike Zoom Pegasus 32 shoes. The zipper closure id visible along the heel of the shoe while the strap is attached on the inner side of the shoe, it is attached to the lace string which is visible on either side of the zipper.

The shoes are unzipped to allow the foot to enter and exit from the heel.

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Image description: Back view of an unzipped Nike Zoom Pegasus 32

2016-05-03 20.58.37

Image description: Side view of an unzipped Nike Zoom Pegasus 32. The heel is visibly separated from the shoe to allow top and rear access.

The wearer can then slide their foot into the shoe, you have to have your foot shoved as far forward as possible and then the zipper can be pulled across and the zipper strap secured with velcro.

When I bought these shoes, my intention was to particularly look at how well these shoes work with various orthotic devices. I have an Ankle Foot Orthosis (AFO), a Bioness L300 and a basic custom insole to compensate for leg length discrepancy. I was going to check how well these shoes worked with each device and report back with pictures. The problem is that these shoes don’t accommodate any of them.

I first tried the shoes with just my lift

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Image description: a black custom made orthotic lift designed to compensate for leg length discrepancy.

After I had inserted the insole, I could barely get the shoe zipped up and the fit was so tight it hurt. I had to remove it. I suspect the shoes might work with a heel lift wedge, which is less invasive but I don’t have one at the moment and will have to find a supplier in Toronto.

I didn’t even bother trying the AFO because it takes up way more space in the shoe and I suspected trying might damage the zipper.

The heel sensor for A Bioness L300 isn’t as invasive as my lift (but I need to use the two things together). Even without the lift, the Bioness (you can read my thoughts on that product here) still isn’t compatible with these Nikes because the heel sensor has to be clipped to the inner side of the shoe.

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Image description: A blue shoe with the Bioness L300 sensor clipped in proper position over the ankle on the inner side of the shoe.

As you will recall, the Nikes zip to the inside and the zipper would get in the way of where the sensor needs to be clipped. Not only does the clip require significan dexterity in at least one hand to operate, it also include internal spikes to hold it firmly in place. It is difficult to remove which detracts from the needed accessibility of the shoe and repeated removals and replacements would likely damage the zipper of the Nikes.

So these shoes are really only useful for people who have no additional orthotic needs. I’m not sure if the wide version of the shoes would better accommodate a lift but i can’t find out as that version of the shoe isn’t available in Canada. The basketball shoe may also provide more space but it isn’t available in my size so I’m not sure.

Now on to the merits of the shoes themselves.

They can indeed be zipped up one handed, but that hand will need some strength and dexterity. The motion isn’t smooth and requires some maneuvering but definitely took me less time than tying laces.

I could however only zip them with my right hand. My left hand could neither negotiate the zipper or the velcro, so be aware of that before ordering. Some hand dexterity and strength is required to properly operate the zipper.

Due to my hemiplegia my left foot is significantly smaller than my right but the shoe still fit comfortably despite my buying the size for my right foot.

That being said, be aware that the tightness of the shoe can’t really be adjusted. As I mentioned above the top laces are attached to the zipper, so if you loosen the shoe, you won’t actually be able to zip it up. You can tighten then a bit but it’s finicky and requires dexterity. I find this to be a major design flaw. The shoes really need to have top laces that can be tightened or loosens independent of the zipper. Doing that might make them more usable with orthotics, though as long as they zip to the inner side, they won’t be compatible with anything like the Bioness.

Other thoughts

While there is an inner covering to protect the foot from the zipper, I highly recommend that people wear socks as the zipper is hard and may irritate your foot.

Conclusions

These shoes are best suited to people who either have the full use of one hand or only minor limited dexterity. They are also best suited to people who don’t use orthotics of any kind.

As with my original thoughts on the Nike accessible shoes back when they were only designed for men, I maintain my conclusion that the claim that these shoes are for disabled people generally is false. They will meet the needs of only a very small portion of the disabled population. I unfortunately can’t really see Nike trying to rectify that any time soon or ever as they are to heavily invested in “Hey we identified a problem for disabled people and we fixed it!” style advertising. They are unlikely to acknowledge that in order to make a more widely accessible shoe, much more work needs to be done.

It is clear that they considered the needs of an individual (see the video in my previous post for background on how the shoes came to be) and didn’t really consider that an individual’s needs are not representative of the scope of people they have now claimed to cater to.

For these shoes to be more accessible they would need to zip to the outside edge (so as to be compatible with a Bioness), they would need to be able to accommodate a variety of orthotics. The shoes also need a mechanism to independently manage the tightness of the shoes that isn’t attached to the zipper. This last one might actually rectify the orthotic situation, at least for insole type orthotics, though likely not an AFO.

Ultimately, I do think these shoes will be good for some people and I will be able to use them as gym shoes because, running and cycling don’t aggravate  issues caused by my leg length difference the way walking does but I won’t be able to use them for everyday use (unless I can get my hands on a heel wedge and it works, I’ll report back if I do).

The biggest issue isn’t even how limited the consumer base is with these shoes. They will definitely help some people. I would have loved them as a kid, back before I became an adult and my body was more forgiving of not wearing my corrective orthotics. Nothing is universally accessible and it’s unreasonable to expect a single thing to cater to all disability needs. The biggest issue is that in all the media, the shoe is presented as though it does fix all those problems. It’s the shoe for people with disabilities. Not the shoe for people with very specific needs because admitting that means that Nike admits to leaving people out.

The thing is we need to acknowledge that these shoes while a step in the right direction DO still leave people out and those people deserve to have their needs catered to. The first step in that direction is for people to express their needs and to have manufacturers acknowledge them and commit to working toward fixing them. The “Hey look we fixed it” mentality and overly inclusive language put out by Nike and happily parroted by the mainstream media are a major barrier in moving forward with further progress and it’s a barrier that needs to be knocked down.

 

Why Don’t You Just Drive?: The Difficulty of Publicly Legitimizing the Needs of an Invisible Disability

When I was in my early and mid teens, I was really excited about learning to drive. When I finally got old enough to start drivers ed at 15, I anxiously waited for my mother to sign the permission form.

These were the days before my autism diagnosis. They were hard years for me because I was so often confused which led me to have melt downs. These meltdowns were then misinterpreted by my parents as immaturity and anger management issues. So when I initially asked for permission to start driver’s ed, my mother said no. She expanded on her reasoning by citing my melt downs and expressing concern that I would be prone to road rage and might hurt someone.

This was a devastating thing to hear from a parent, that I was considered dangerous enough to be a significant risk to someone’s safety. I also disagreed with her and autism diagnosis and misinterpretation of my behaviour aside, I can now say for certain that she was wrong.

When I was finally allowed to take driver’s ed, the biggest barrier in terms of training was my cerebral palsy. Not because I physically couldn’t drive or believed that I couldn’t. I had grown up around a family friend who had an amputation at the shoulder, so I was well aware that you didn’t need two fully functioning arms to drive safely. My driving instructor on the other hand didn’t get the memo.

He spent an uncomfortable amount of time focusing on my cerebral palsy. He developed selective vision where I was concerned. He claimed I couldn’t do hand over hand steering, even though I can and he’d definitely seen me do it. So he suggested I use a device he called a “spinner” which is a knob that attaches to the steering wheel so it can be steered one handed. I found the device uncomfortable to use. When I took it home, my dad was shocked that I had been given what he called a “suicide knob”, as they allow the wheel to be jerked so quickly that you can actually flip the car. They are actually illegal for this reason. A fact my instructor had failed to mention. It is possible that if I had wanted to pursue using it, I could have gotten a legal exemption as an accommodation but the whole situation was just bizarre, particularly because, I genuinely didn’t need it and actually found it more difficult to use.

When I completed my driver training, the instructor gave me the lowest possible passing grade claiming that in our in car sessions, I had consistently only come to rolling stops at stop signs. Not only do I not remember doing this, he never once mentioned it. You would think that if I was consistently (or even once) making an error that it would be his job to point it out so that I could correct the behaviour. This grade and its justification is made all the more suspicious by the fact that he gave another classmate an A grade even though she had run a red light during one of her sessions.

I would love to say that I got my license to spite him but I never did. It wasn’t a case of parental discouragement either. I just actually hate driving. I find it really stressful and overwhelming. My reaction to this stress is not as my mother predicted to become angry, I just want to pull over and not drive anymore. I am certain my reaction to driving is actually directly linked to the fact that I’m autistic. It is rather interesting that the thing my mother was convinced (even though she didn’t realize it at the time) would make me a danger to myself and others actually keeps me from driving and by extension myself and others safe. I don;t say that because I think I would have gotten road rage had I continued driving autism meltdowns and rage are two separate things and I don’t think I was ever at risk of road rage.

I am generally comfortable with the fact that I don’t and as far as I’m concerned can’t drive. I take public transit and that for the most part works for me. I have however noticed that other people seem to have a big problem with it.

As someone who almost exclusively relies on transit to get around, I have at times been both a critic of the system and an advocate for better service. This was especially true when I was living in Regina because the transit system there is truly awful. It doesn’t run nearly often enough, the routes are not integrated well so it can take over an hour to get somewhere you could drive in under ten minutes. Regina Transit also has gaps in service, there are places (like the airport) buses just don’t go. They also run a very limited service on Sundays and often don’t run at all on holidays.

All of these things were problematic to me. I couldn’t consider a job at the airport because the bus doesn’t go there. If I was working on a Sunday, I had to make sure my schedule fit within the limited scope of the Sunday service schedule. Working on a holiday was basically impossible, even though I would have loved to take advantage of the higher pay.

I am also completely aware that poor public transit isn’t just a disability issue. It also has environmental repercussions and disproportionately hurts the poor.

Because transit was how I got around in my daily life. I would bump up against these issues and I would complain about them. Unfortunately people almost never agreed or sympathized with me. Instead I would get asked “well if transit is so bad, why don’t you just get your license?”

Here is where people treat visible and invisible disabilities differently. If I was clearly physically incapable of driving, I would never get asked that question. People might actually be sympathetic and start to think critically about the social ramifications of a terrible transit system. In this instance I’m specifically talking about the reactions of people I know. While I’ve definitely gotten the “just drive” response from acquaintances and strangers, I would never be so hopeful as to assume they would be sympathetic to issues of disability and transit. I’ve seen far to many people complain about wheelchairs on buses to be that optimistic.

These reactions come predominantly from family and friends. All they see is that I’m not physically incapable of driving. When I try and explain how uncomfortable and stressed driving makes me, I get brushed off. Even though I have long since been diagnosed on the Autism spectrum. They still come back with “everyone gets stressed sometimes, you just need to learn to get over it.”

It’s a clear case of people won’t deny what they can see (like physical disability) but will continue to misunderstand what they can’t.

These interactions are frustrating on so many levels. There’s the denial of my own experiences and reality. There is also the complete dismissal of the wider issues of poor transit. The big one that I really can’t understand is I’ve told them I feel uncomfortable on the road so why under those circumstances are they so comfortable with the idea of me driving?

I may be certain of my low risk for road rage, I am however not remotely so convinced of my ability to remain calm and focused. I may be able to stop at red lights or stop signs. I may know the protocols for a four way stop but I am less convinced of my ability to be prepared for the unexpected like children darting into the street. I don’t feel comfortable driving, so why are other people so comfortable trying to force me into that situation? It just seems like a recipe for disaster to me.

I live in Toronto now and the transit system is much more comprehensive though far from perfect. Here however, using transit as your primary way to get around is common and acceptable. Here I can criticize the transit system and have people nod in agreement and join in with their own complaints.

I would however like to be able to visit my home town without having the transit system tell me where I can go and when only to have my own friends and family tell me that it is my own fault when I complain.

 

The Cost of Unnessecarily Medicalizing Acts of Daily Life

A few weeks ago I found myself in the Occupational Therapy Kitchen of my local rehabilitation  hospital. My physiatrist was filming me demonstrating how I undertake various cooking tasks as a person with hemiplegia (to be shown to her medical students).

Cooking for me is both time consuming and laborious. It can take me nearly ten minutes to peel a single potato. Peeling even that one potato can leave my left wrist cramped and in pain. I generally avoid cooking anything that involves peeling vegetables as a result.

My doctor started out by having me demonstrate how I would normally complete a task by myself at home, which inevitably took me about three times longer than an able-bodied person.

Then she had me do the task over, using the adaptive kitchen gadgets that the hospital used for physiotherapy. While my actions were still slow and awkward, the tasks were completed more quickly and with greater ease. The usefulness of adapted tools for daily life cannot be fully described.

Much of the reason for this is that I and many people do not have access to them because they are prohibitively expensive. I suspect that part of the reason for this inflated cost is that they are marketed not as kitchen tools (or other adapted gadgets for dressing, cleaning, etc.) but as medical devices.

I doubt most people view their kitchen knives, pots or cutting boards as medical devices. I suspect even disabled people who have access to the adapted versions actually think of them that way.

Yet if you google “adapted cutting board”, you will come across companies like Patterson Medical, which sells adapted kitchenware along with other adapted devices for various acts of daily living. Patterson Medical does also sell more tradition medical devices such as splints.

The relegation of adapted devices to the almost sole domain of medical supply companies is that they become very expensive. A standard non adapted cutting board can be purchased in the price range of $10.00-$30:00 depending on size and material. A large Patterson Medical cutting board costs $66.00. For all that additional money, you get metal spikes to hold food still for cutting, suction cups on the bottom to hold the board steady and a corner with sides to keep bread still for spreading PB & J. None of these differences really justify the additional $30.00-$50.00. An additional $15.00 maybe to cover the extra material and labour.

Smaller ones can be purchased on Amazon for the still inflated price of $57.99 (and it’s not nearly as good). This one is sold by a company calling itself The Therapy Connection.

As a poor graduate student, most of my kitchen gadgets were either gleaned from my mother’s kitchen or bought at the dollar store. As such they have no adaptive qualities.

Not having access to affordable adaptive gadgets inevitably means doing without them. Meaning that access to tools that allow people to go through life more safely and conveniently is a luxury. A luxury should really be me coveting a Vitamix Blender. You know, a thing I want but will never have and can completely live without, without consequences.

A product that allows disabled people to do a task more safely and easily and at a closer approximation of how the rest of the world performs that task, should not be a luxury.

The thing is, these are products that can more often than not benefit everyone. They greatly reduce the risk of accidental self-injury while preparing food. By keeping them firmly relegated to “for disabled people”, they will never enter the mainstream where they may become more affordable.

One of the reasons for this is that everything about being disabled is medicalized. Nondisabled people avoid that association and view basic adaptations as oddities. They avoid using them themselves in any context other than voyeuristic experimentation. Consider the fascination with wheelchairs, scooters and crutches as long as they know they can walk away from them as an example.

Another non financial cost is that people who would benefit from such devices may not even know they exist. They are sold on the internet and at specialty stores. If you don’t have a strong disability peer network or helpful doctor. You may not know these things exist.

Keeping everything about disability labeled either medical or therapeutic, keeps them on the fringes and limits access.

Fighting My Internalization of the Hierarchy of Disability

I have had my autism diagnosis for a decade now and yet I often still hesitate to publicly identify myself with the label. For quite a while my Twitter profile only listed me as having cerebral palsy. I never thought twice about sharing that I had cp but I had misgivings about coming out as autistic. Ultimately I was more annoyed with my reticence to identify as having an Autism Spectrum Disorder, than I was about how being openly autistic might affect the way others perceive me. I however think that talking about why I felt that discomfort in the first place is important.

Disability, regardless of form or type comes with significant stigma in out society. That stigma leads to prejudice and discrimination, so it isn’t difficult to understand why some people who can hide their disabilities choose to do so. In the end it is a personal decision for which no one should be judged. But I already have a visible physical disability and cannot pass for nondisabled even if I wanted to, I’m already permanently labeled as disabled. So why do I feel compelled to hide my autism?

The answer to that lies in a phenomenon known as the hierarchy of disability. It is a social construct that makes certain kinds of disabilities more acceptable than others. It is an arbitrary system through which disabled people are judged and categorized and it’s something that many of us were taught (though often unintentionally) to internalize.

The basic idea behind the hierarchy is the prejudicial idea that disability is equated with being a burden or public nuisance (by this I mean that people are immediately forced to deal with the fact that the disabled person exists and might interact with them unexpectedly). So to maintain higher status a disabled person must not be perceived as either of those things.

Basically the less a disabled person makes the nondisabled majority think of other disabled people, the better. It’s why many nondisabled people are convinced that saying things like “You really don’t seem disabled” or “I don’t think of you as disabled” are compliments. What they are really saying is “I don’t associate you with all the negative things I think being disabled is”. It is also the root of the faux compliment widely hated by disabled people “you’re such an inspiration”.

It is all tied into associating disability with negativity but within the framework of the hierarchy, some people make out worse than others. People with intellectual disabilities or who are perceived to have intellectual disabilities are inevitably found near, the bottom.

None of that erases the prejudice and discrimination experienced by disabled people who are perceived  to be higher up in the hierarchy but it does come with privileges. Such people are at least socially often treated better and aren’t met with as much discomfort and fear.

In the end the hierarchy is flimsy though and requires the investment of time and effort of disabled people to maintain their status as less of a burden or nuisance because inevitably they enter new environments and meet new people who don’t automatically know where on the hierarchy, they stand. So depending on context a person’s position can go up or down at the whim of the nondisabled people around them.

And Disabled people do buy into this idea that they should avoid and shun other people with disabilities or deny themselves accommodations to be perceived as less of a burden. Buying in can seem like the only way to avoid a lot of self loathing. Plus believing yourself to be some kind of exception allows you to feel superior, like you achieved something.

Buying into the hierarchy also keeps disabled people separate from one another and keeps us divided. This is particularly problematic in terms of advocacy because either some people distance themselves from the disability rights movement altogether or have tunnel vision and ignore the needs of disabled people whose lives are different from your own.

Finding disabled people who buy into this idea isn’t hard. I’m not going to link to anyone because this post isn’t about judgement or blame. We are raised in this social construct and it is entirely understandable why people believe it.

I am guilty of it myself. It wasn’t until I started engaging with Disability Studies that I was even fully aware of how brainwashed, I had become and was able to begin dismantling those toxic ideas. My indoctrination was not systematic and the people who contributed to it had no idea they were doing it.

I grew up almost entirely cut off from other disabled children. The only contact, I had with them was tangential, when I went for physio or to the local rehab hospital for appointments or the odd event. I was aware of other disabled children but they were always separate often intentionally segregated in special classrooms that existed in hospitals or schools that I didn’t attend. It’s not hard to see how as a child who was almost universally mainstreamed that I came to the conclusion that I wasn’t like them. I would never have said that I was better than they were but the general discomfort I felt when I was around them shows that on some level I believed that I was.

On the rare occasions that I was enrolled in segregated activities with other disabled children, I chose not to engage and felt that the activities were too mundane (this is likely due to the fact that the organizers had no idea how to plan interesting activities for children with diverse disabilities). This only made me more convinced that I didn’t want to be grouped in with other disabled people. I began telling my mother, not to enroll me in such programs. It never occurred to me that the problem wasn’t the other participants but rather very poor planning and understanding on behalf of the facilitators.

As a child I had no formal accommodations in school, and on the rare occasions that I requested them, I was denied. The message that I shouldn’t have them was pretty clear (I had no idea until I was an adult that my rights had been violated).

Add to that, I was already feeling the widespread prejudice of being disabled. People would treat me like a toddler and use baby voices. I often felt compelled to say to people “I have a physical disability but there is nothing mentally wrong with me” (I cringe thinking about this now). It didn’t occur to me that their treatment of me was unacceptable period. Regardless of type of disability.

So when at eighteen, I was diagnosed on the autism spectrum it really threw me. On the one hand that diagnosis changed my life for the better in so many ways. I now understood my childhood so much more clearly. Understanding why I reacted to the world the way I do, helped me to put coping mechanisms in place.

It also opened the door for a lot of accommodations that I had been denied during my grade school years. Yet as I entered university, I hesitated in taking advantage of them. In fact, when one professor saw that I was struggling and recommended I seek accommodation, I was offended.

When I did finally seek accommodation I began to flourish academically which is what has ultimately allowed me to reach the academic level of PhD Candidate. Yet despite all the benefits not only the label and accommodations have afforded me, I still hesitate to publicly label myself because I know that the additional stigma of a DSM diagnosis confirms so much of the deeply held misinformation the nondisabled public has on disability.

Passing for neurotypical is both easy and hard. If I don’t identify, people don’t notice. At worse I come off as rude and standoffish. Yet the constant vigilance to police my own behaviour and function in society is exhausting.

Also I happen to really like myself and I am aware that autism plays a big part in making me who I am. If you removed my autism, I fear I would lose my self.

So for me, publicly identifying as autistic is not just a tool of public advocacy and identification with autistic community. It is also a rebellion against the parts of myself that were divide the disabled community and unify the dual parts of my disabled self.

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.