My Son’s Swim Coach’s Second Cousin’s Wife has a Student With Cerebral Palsy: The Disability Anecdote

The disability anecdote is something that I’m sure most if not all disabled people have faced.

At its most basic it can simply be someone, having discovered they are in the presence of a disabled person who feels compelled to create some bizarre sense of false common ground.

The scenario generally involves a nondisabled person finding out that you have a particular disability.Perhaps as a result of casual conversation but more likely because they have asked an invasive question. One that has very likely been phrased some thing like this,

“I’m sorry. I don’t mean to be rude but what wrong with you/your [insert visible characteristic of disability]”

If the disabled person is cooperative or just doesn’t want to deal with the backlash of refusing to answer and actually obliges the questioner with their diagnosis it is not uncommon for the nondisabled person to then respond with.

“Oh my [insert vague and often several degrees separate aquaintance] with that/some other disability that they perceive to be similar but probably isn’t”

They then look at you expectantly and I for one still have no idea what to do with these interactions. Do people really expect to be congratulated for being able to come up with a single example of another disabled person that they or just as frequently someone they know has encountered at some point?

Are they trying to tell me that I am not alone?

Are they trying to tell me that they are not completely ignorant of disabled people?

If the latter, they are failing just through their approach. Yet, nondisabled people seem to love to share these anecdotes which prove nothing more than how invisible disabled people are to them. Seriously, considering the percentage of the population that is disabled (generally measured around 20%) these anecdotes really just show how far we have to go in terms of visibility and public access.

These instances are troubling but they are also a more benign (on a very malignant spectrum) version of the disability anecdote.

These anecdotes also come up in opposition to disability rights activism. They most often come from nondisabled people but are also offered by disabled people whose disabilities may differ from that of the people doing the advocacy. These anecdotes generally go like this,

Disabled person: “This action/image/policy is particularly harmful to people with X” (often followed by a list of reasons and evidence of that harm)

Nondisabled person/person with different disability: Well I know someone with X and they are perfectly fine with it”

These interactions are infuriating because they are entirely premised on the idea that the opinions of disabled people can be trumped by the mere mention of a possible counter opinion by a different disabled person. This false idea also appears in conflicts that occur between disabled people–“well I’m also disabled and I don’t agree with you so…”–but in those cases, they can be challenged or the detractor can be asked to justify or explain their position. When the hypothetical disabled person (and yes I often doubt they actually exist) is just an anecdote, the argument hinges entirely on the fact that there exists an alternate viewpoint not on whether that viewpoint has merit or can withstand questioning or scrutiny.

The implied rightness of this hypothetical opinion tends to be based entirely on the fact that it continues to allow the maintenance of the status quo. A disabled community asks for change and someone pops up to say that no change is necessary because “they know someone with that disability”.

An absent disabled person whose opinion cannot be challenged or even confirmed and yet is expected to be not only believed and respected but adopted.

It is particularly frustrating when these anecdotes come from parents who use their disabled children as weapons with which to beat disabled adults.

In these cases, I always wonder

Does the child actually think this?

Is the child old enough to think critically about this issue?

Regardless of age, where and from whom is the child learning about disability as a lived experience?

Does the child have access to alternate opinions or is it safe to assume that they may be parroting opinions on disability that they have been presented by their parents and broader social group?

Does that social group include people with disabilities?

I have these questions because as a disabled adult my understanding of disability has changed drastically from what I thought as a child. I fully acknowledge that many of the views I held back then were toxic and built on internalized ableism. I simply did not have the critical thinking skills to do anything but accept the worldview I was offered by the almost exclusively nondisabled people around me.

And yet, disabled children are effective weapons against disabled adults because it is not acceptable to publicly question them. You cannot reasonably ask parents who claim to speak on behalf of their children to produce them for confirmation and clarification.

Even when the anecdotal disabled person is an adult it’s considered inappropriate to question the validity of their argument too closely. This is a direct result of the paternalistic ideas around disability that society holds. You are not supposed to overtly and publicly challenge disabled people even if you yourself are disabled. It is often perceived as an unreasonable attack.

So anecdotal disabled people continue to be an effective weapon against calls for systemic change. They may not be effective at changing the minds of the disabled activists their hypothetical views are used to oppose but they are popular with those who do not want to change. Those people can be comforted that they need take no action. That they need not interrogate the way they think about disability.

I see these anecdotes in all their shades so frequently that I also wonder, how often am I being used as precisely that anecdote (because odds are that I am) and by whom? What views are being attributed to me when I’m just someone’s neighbour’s second cousin’s wife’s former swim student with cerebral palsy/autism?

 

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Undesirable: Toxic Romantic Dreams, Disability, Sexuality and Relationships

sexy ISA

Image Description: A stenciled modified image of the International Symbol of Accessibility, A presumably male stick figure in a wheelchair being straddled by another stick figure who is presumably female because of the addition of a ponytail hairstyle.

CW: This post contains discussion and descriptions of sexual harassment, violence and bullying

 

Considering the Kathy Lette article in the Daily Mail (which I wrote about here and Carly Findlay wrote about here). I want to offer my own narrative of disability and sexuality, a narrative that isn’t driven by a parent or other third party.

It is often said that disabled people are perceived as nonsexual and this is certainly the experience of some people. I previously wrote a response to this New York Times piece Longing for the Male Gaze. As problematic as I found the author, Jennifer Bartlett’s romantization of sexual harassment, I do understand it. While I do not and never shared that particular longing. I do understand the creation of problematic desires and fantasies created around cultural expectations of romance and relationships. My personal experience, however, was not so much marked by being viewed as nonsexual but rather simply undesirable.

In fact, my sexuality was not only acknowledged it was used as a weapon against me.

For as long as I can remember I have been excluded. It was the first form of bullying that I experienced as a child. Starting in kindergarten and continuing through to the end of high school. While that exclusion in those very early years was certainly not tinged with romantic rejection—we were all too young for that—it set a precedent for my being denied even friendly personal relationships. It created a deep desire within me for inclusion and acceptance.

As I got older the bullying became more direct and aggressive. From about grade six onward, harassment from girls in my class often contained aspects of sexual humiliation. From being cornered at my desk and being told that if I wasn’t already a lesbian I would be within a year to mocking me when they realized that I didn’t wear a bra.

As a physically disabled autistic person, bras have been a source of stress since I started wearing them. They are often inaccessible and more often uncomfortable. Yet, within days of the first comment about my lack of bra (I really didn’t need one), I started wearing sports bras (the only bras I could stand to wear at the time) just to stop the comments.

Eventually, the bullying turned to my relationship status (or more accurately my lack of one). The girls first dropped a note off at my desk which said: “Maybe if you got a boyfriend, you’d have more friends”. They later cornered me to deliver this message in person. I clearly learned that being in a romantic relationship might lead to broader social acceptance. I was, however, unable to acquire the boyfriend necessary for this entrer into social acceptance.

In elementary school, I was told I needed a boyfriend to be socially valuable. In high school, that message continued but it was also clearly accompanied with the message that no one would ever want me.

The very idea that someone might be interested in me was unthinkable and the source of much amusement for my classmates. In grade 9 one of the girls’ favourite torments would be to try and determine who I had a crush on. They used whether I blushed as evidence—I am very pale and blush easily—they got a lot of amusement out of embarrassing me in front of whatever boys happened to be present.

In high school, the boys joined in this abuse. It started with my being mock proposed to repeatedly to the uproarious laughter of the audience.

It culminated into an incident in grade twelve where four boys cornered me alone in an empty classroom and explicitly described pornography in detail and mocked my embarrassment, telling me that if I couldn’t handle such information that no one would ever want me.

When I reported the incident to the school, I was told that I probably misunderstood what had happened and that the boys probably didn’t realize that they were bothering me. Because disabled women can not only experience sexual harassment, they can also have it minimized and ignored when it happens.

The idea of dating me was so much a joke and a repugnant idea to my male peers that having it suggested that they were dating me was an insult. A rumour started that I was dating my science partner (because if you so much as speak to a member of the opposite sex in high school, regardless of context something sexy must be going on). He blamed me for the rumours. He got so sick of denying them that he eventually found me alone in a hallway one day and screamed every insult that he could think of at me. There was a small justice in this instance because he didn’t see the health teacher come up behind him and witness the entire tirade. He was swiftly and loudly told off.

Through all of this, I was hyper aware of what made me different from the other girls who were not treated with the disgust and scorn that I was. Namely, the fact that I had cerebral palsy. I became hyper aware of anytime someone might have to come into contact with my left hand (the most visible aspect of my CP).

As a kid, I participated in a lot of group activities whether it was church youth group, brownies or that time I participated in French Youth Parliament (my French really wasn’t up to the challenge). As a consequence, I frequently found myself having to play ice breaker games. One that always seemed to be played was where everyone stood in a circle and grabbed the hands of random people across from you. You then had to twist and wind between people’s hands to try and return to an untangled circle.

Every time this activity was announced, I had a moment of panic because I always feared that when I reached my left hand out, that no one would take it. Though someone always did.

It wasn’t until I was 22 and in a cultural exchange program that some failed to take my left hand when circumstances dictated they should. We were dancing to Malian music in a line holding hands and when the Canadian group leader joined the line he grabbed wrist instead of my hand. I was startled and just blurted out “you can take my hand”.

“Are you sure?” he asked, he clearly didn’t seem to want to.

“Yes”, He did it reluctantly and soon decided to leave the dance.

These fears of being rejected in social settings and the continued messages that I was undesirable did not culminate in my wanting to be perceived as a sexual object like Jennifer Bartlett but they still left me with toxic dreams about relationships.

I didn’t dream of being seen as a sexualized ideal. I just wanted to be loved and included. Getting this attention from one person would have been enough. I was desperate for it.

The desire to be loved and wanted is not in and of itself dangerous or unhealthy but it can be when you’ve been told over and over again that you are undesirable and that this undesirability is also what makes you a social outcast. I was also clearly told that I was so undesirable that to be seen with me would have social consequences for anyone willing to be with me. This lead to expectations that any relationship I had would likely be isolated from the rest of the world. While I heavily romanticized this scenario as a teenager and young adult, I am well aware now that this kind of dream and the level of desperation that I had for it, left me at serious risk of abusive relationships.

This is evidenced by how I behaved around and responded to boys I had crushes on. I wanted so badly to feel loved, that I would pretty much develop a crush on any boy who would initially speak to me with any degree of kindness. When I was 16 this meant I was infatuated with a boy who was initially very charming but in reality, had a deeply misogynistic streak to him.

I can’t remember what precipitated the incident (I think I had said something sarcastic to him) but one day when we were rehearsing for the school musical he slapped me hard across the face. It was witnessed by the stage manager (another student) who came over ready to punch him for having hit me. I talked him out of it and while it was probably best that they didn’t get into a fight in the school gym, I wasn’t trying to de-escalate a fight. I was defending the person who had hit me. I still wanted him to like me.

I am not sure when exactly when I was able to start thinking critically about those toxic romantic dreams. I suspect it began after I actually found social spaces where I was accepted as a friend. This didn’t do anything to ameliorate my romantic prospects but I did finally have a space where my desirability as a sexual or romantic partner was not held up as necessary for social inclusion. A relationship was not a social status symbol and association with me was not cause for a person to be mocked.

The thing is that this didn’t really start to happen until I reached grad school. I was also in Disability Studies which attracts a disproportionate number of disabled scholars. In my master’s program, I was one of three people with cerebral palsy and there were many other disabilities represented.

This was huge in terms of creating a sense of self-worth and community but I shouldn’t have had to wait until I was in my late twenties and surrounded by people with common experiences to be accepted.

This is why first person narratives of disability are so important, particularly in relation to sexuality because we can talk about the social impact of being deemed undesirable. Third person narratives like those of Kathy Lette about her son really just buy into the social stigma and work with it rather than challenge it.

Her son asked her if he would ever get a girlfriend. A question to me suggests a desire not just for sex but for a relationship, a prolonged romantic experience. Lette’s response was to consider hiring a sex worker which really meets none of those desires even if sex is a desired part of a romantic relationship.

Considering hiring sex workers as a solution even in part to the issue of the widespread cultural disinterest and even disgust with the idea of sex and romantic relationships with disabled people is in some ways to accept and fail to challenge those ideas.

A sex worker is not going to offer a relationship beyond what is agreed and paid for. Disabled people know this. It is not a comparable substitute for actually being accepted and wanted.

I want and deserve meaningful human relationships both simply social and romantic. These are not things I can buy. In order for me to be able to have them. I need people to actually interrogate why disabled people aren’t seen as options for romantic partners. I need more than the platitudes I received from a male friend at 18 when in a moment of bravery I shared my insecurities and the sentiment that no one when I fantasize about an as yet unseen and unmet lover, thinks of someone like me. I even asked him outright if he had ever thought about dating a disabled person.

He deflected by magnanimously claiming that he was open to falling in love with someone who was disabled. He would however not answer my question directly because of course, he had never actually considered it. He, however, wouldn’t directly admit as much because to do so would be to admit to an internalized bias and discrimination.

I want people to be aware not only that disabled people are sexual beings but also be aware of the widespread messages that they tell each other and disabled people about how we are undesirable. I want them to understand the harm that causes and how it sets people up for potential abuse. It goes beyond them simply not considering having a disabled partner.

I want those ideas directly and actively challenged. I want to see disabled people culturally framed as beautiful and I want this to happen without a flurry of think pieces on how progressive it is. Those think pieces are evidence of how strange it still is how people still feel the need to applaud it. The change will come when disabled people can be portrayed as beautiful and sexual and the response is to agree and admire that beauty without qualification.

I don’t want any more disabled people growing up to be told that no one will want them just because they are disabled.

 

 

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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

2016-05-02 21.19.57

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.

2016-05-03 20.58.25

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

2016-05-02 20.42.25

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.

2016-05-02 20.48.44

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.