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.

 

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Can We Talk About that Paralympics Ad?

British Broadcaster Channel 4 (which has the broadcasting rights for the 2016 Paralympics in Rio) recently released their trailer for the games and it’s getting a lot of positive attention.

Here it is

Here’s a version audio described by Australian comedian Adam Hills

I’ve actually been trying to write this piece for several days and have been having difficulty. Not because I don’t know how I feel about this ad but because I don’t know how to articulate it. I’m still not sure that I do. I have found that when I criticize the media representation of disabled people. I am often accused of criticizing the disabled people in that media.

I want to make it clear that this is not what I’m trying to do. I am trying to talk about the implications of how disabled people and their accomplishments are framed and disseminated for a majority nondisabled audience.

I want to like this ad. It has so much that I love. It has an almost entirely disabled cast and so many of them are doing bad ass things to appropriately themed music. If that was all this was, I would probably be sharing it all over social media to the point of annoying everyone connected to me.

There are two things about this ad that just end up making me cringe. The use of the term Superhumans to refer to Paralympians and the song “Yes, I Can”.

The term Superhumans is not new to the Paralympics. The commercial that Channel 4 used for the 2012 London Paralympics is called “Meet the Superhumans”

You can see it here,

There was no audio described version of this ad. Which I guess speaks to a degree of progress in this year’s advertising and general disability awareness.

So why do I dislike the fact that the Paralympians have been labeled Superhumans? It’s not because I don’t think they are phenomenal athletes. They absolutely are. In a way calling them Superhuman detracts from that fact.

It’s ironic how closely the term Superhuman is to the term Super crip.

Super crip is a term used by disability media critics to describe the phenomenon of celebrating disabled people in either a way that lacks meaningful context or in a way that seeks to effectively erase their disabilities except to add emphasis to the extraordinariness of their accomplishments. It’s not just that they’re amazing athletes. It adds a degree of “Can you believe someone like that could do this?”

The 2012 ad is particularly guilty of this with its juxtaposition of scenes signifying how people became disabled (often violently) with images of them succeeding as athletes.

It does from A to B without looking at any of the context of how people get to B or for that matter who CAN get to B. Because athletic success, particularly for disabled people is not just a matter of having the desire to do it.

Which brings me to the repeated refrain of “Yes, I can” from the 2016 ad, which buys fully into the “to believe is to achieve” stereotype. It is not just a group of musicians, dancers, and athletes showcasing their skills. They really sell the myth.

Consider the scene in the career counselor’s office where the counselor tells a wheelchair user “No, you can’t” which is immediately followed but by that young man playing wheelchair rugby while screaming “YES, I CAN”.

The thing is “No, you can’t” is far more than just the words of an individual who has vastly underestimated your potential. It is a systemic reality. It is far more accurately an expression of “No, you can’t because we won’t let you”. Wheelchair Rugby Clubs do do not appear fully formed just because someone has the desire to play.

Getting to be a Channel 4 “Superhuman” is in many ways as much about luck as it is about skill and hard work. The reality is that access to athletic training for disabled people is limited to those who have physical and financial access to it. If there is no training available in your area or even if there is but you can’t afford it, all the desire and willingness to work in the world is not going to get you to the Paralympics.

In many ways the oversimplification of “yes, I can” actually undermines the extent to an athlete’s success. It ignore the work they put in not only training but also in getting access to that training.

It also erases anyone who doesn’t have access to that training because as I mentioned it’s selling “to believe is to achieve” hard.

The video also delves pretty deeply into inspiration porn territory with it’s images of disabled people doing everyday things. Like looking after children or brushing their teeth. Considering that disabled parents still face the threat of losing their children solely because they are disabled and not from any identified inability to provide care, including Canadian Paralympian Charles Wilton. Wilton did eventually get to keep his son but that doesn’t erase the fact that it was considered acceptable to plan to remove the child before he was even born or before actually assessing it his parents could care for him.

The erasure of systemic barriers in favour of an “overcoming” disability narrative is  misleading. It not only erases the reality of succeeding as a disabled athlete–the need for specialized adapted training and coaches who are willing to work to make those changes–but it also erases the people who don’t have access to those things and completely ignores the reasons why.

It is a disservice to the real work put in by Paralympians whose work and not just successes deserve to be celebrated.

It also promotes social complacency by putting all of the onus for success on disabled people and letting nondisabled people of the hook for the perpetuation of an inaccessible world that actively limits rather than supports our success.

I want to see more bad ass disabled people doing bad ass things but I want those stories to contain context which holds society accountable for why there aren’t more bad ass disabled people being allowed to do bad ass things.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why is this request making me so uncomfortable?

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

 

 

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

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

Let’s Talk About Disability, Periods, and Alternative Menstrual Products

There is so much I want to say about disability and menstruation. So much that I could never fit it into a single post. I have noticed that there is very little written about disability and menstruation generally and what little there is is most often not written by disabled people. As a result a lot of it is about control and often menstrual cessation in order to make the menstruating person more convenient for a care giver. This sometimes goes so far as sterilization of the disabled person.

The dearth of material on disability and menstruation from the disabled perspective likely has a number of influences that include the fact that menstruation is still unfortunately a taboo subject generally that people are embarrassed to talk about. Add to that the very idea of disability and sexuality is also still (somehow) widely denied. Which is, I suspect why so many nondisabled people feel so comfortable talking about period cessation as a reasonable solution to disabled people who have periods.

This focus on just stopping the whole business of menstruation is frustrating because it primarily marks the disabled body and its natural functions as too inconvenient. It also means that for those of us who do menstruate that we are left with disability specific information on how to deal with our periods.

It is the latter issue that I’m going to deal with now because the first issue while so important is just to big for me to handle right now.

I am going to talk about disability and the accessibility of alternative menstrual products.

Unfortunately, I am just one person with just one kind of disabled body and so nothing I say will have universal application. This is one of the reasons why we really need more disabled people to share their stories and experiences. If you have a different experience please share it in the comments or write your own blog post about it and share that in the comments.

Hopefully in spite of this I will have something useful to say or spark a conversation to get more voices heard because I really feel that it is essential to demystify and destigmatize not only menstruation and particularly disabled people menstruating.

For context (to see if what I say will translate well for you) I have left side hemiplegic cerebral palsy and am autistic. So most of what I have experience with is dealing with menstruation literally single handedly and the sensory aspects it entails.

I started menstruating when I was 11 and have primarily used pads as my go to menstrual  product. I found tampons difficult and uncomfortable for pretty much my entire childhood and teen years. I only started using them rarely when I was well into my twenties.

I have never found pads to be particularly comfortable and couldn’t manage to deal with anything other than the thinnest option. I’m still not a fan of tampons. I find the uncomfortable but sheer pragmatism has forced me to use them occasionally. I am always hyper aware of them the entire time that I do.

In the last decade or so alternatives to the standard and and tampon methods of dealing with menstruation have become more mainstream (though they have definitely existed longer than that).

Alternative period products are generally washable and reusable and are considered to be both more environmentally friendly and more cost effective.

The oldest alternative period product is probably the menstrual cup

Menstrual cup comparison pic

Image description: a comparison of 12 kinds of menstrual cups including variations from the following brands; Juju cup, Diva Cup, Lunette cup, MCUK, Sckoon, Femmycycle, Lily cup (produced by Intimina), and Me Luna (pic credit from Vitals can be found here)

I was told by a menstrual cup user that I would be unable to use menstrual cups because insertion requires two hands (they were referring to the portion of insertion that requires the menstrual cup to be folded small enough for insertion into the vaginal canal). I believed them for years.

A menstrual cup usually costs around $40CDN and can be used for a year or more before requiring replacement (see specific brands for life span as they differ from product to product).

Yet a curiosity ultimately led me to buy a Diva cup last year anyway. I can report that they can in fact be used one handed. They can be folded by bracing the cup against something (like your leg or other arm) and then inserted as per the basic instructions.

I can also report that I find the menstrual cup to be far more comfortable than tampons. I can’t even feel it when it’s inserted. If I can feel it, it’s a good indication that I haven’t done it correctly and should reinsert.

Intimina, the company that manufactures the Lily cup and Lily cup compact recently put out this infographic about the benefits of menstrual cup use

How a Menstrual Cup can change your life

Unfortunately the graphic is so involved it defies an accurate image description. When I brought up this accessibility concern with the company via twitter, they created a more screen reader friendly version of the information which can be found here.

In addition to my Diva Cup, I also have a Lily Cup compact which folds up into a more convenient size to be carried in a pocket or purse (for when I don’t start my period in the comfort of my own home).

As you might have noticed there are a lot of different menstrual cups which might seem overwhelming but this selection is useful because it means that there are options not only in the sizes and lengths of cups available but also in the materials used (which is good to know for people with latex allergies). A more comprehensive guide to the options available a buying the right one for you can be found here.

The other product that I want to talk about is period panties. The kind that have absorbency built right in and are designed to replace pads or at the very least panty liners.

The brand that I have experience with is Thinx. The least accessible thing about these period panties is the cost which ranges from $24-$38USD (damn the abysmal exchange rate) per pair so they are a significant initial investment. I however, love them. They are significantly more comfortable than pads and easier to put on as there is no finicking with packaging or sticky tabs that are as likely to stick to itself as it is to your underwear. Thinx are underwear and are put on and removed like underwear. There are no extra pieces or steps.

The company is careful to not guarantee that you can replace pads with their product. I have however found them to be quite absorbent. I have slept in their boyshort which is advertised for light days on a medium flow day without leaks and woke up still feeling comfortable.

Thinx boyshort

Image description: a white woman stands in Thinx boyshorts underwear and a tank top.

I also appreciate that the boyshorts are gender neutral and Trans inclusive recognizing that it is not just women who have periods.

thinx boyshort gender neutral

Image description: a man stands in Thinx boyshorts in profile. He has a tattoo that says happiness on his side. both images taken from the Thinx website here.

The most onerous thing about period panties is rinsing them out before washing them which does require some hand control. I get around this by putting them on the floor of the shower and pressing the blood out with my feet as I wash my hair and then hanging them to dry until I do laundry.

I only use the boyshort and sport styles and like them both. I also have a couple pairs of the hiphugger style but I only used them once. I find the lace uncomfortable and it gave me a rash (so beware of this if you have sensitive skin). It’s unfortunate because the hiphugger style is the most absorbent. I wish they would make an equally absorbent model without the lace.

If you are interested in trying Thinx you can get $10 off by clicking this link.*

Padkix is another brand that makes period panties but I have not tried them.

Since I started using Thinx and menstrual cups, I have given up using pads and tampons entirely and my periods are more comfortable and less eventful as a result.

I usually start using Thinx a couple days before my period is supposed to start to avoid unexpected public leaks (which are a thing I no longer worry about). I then use Thinx in conjunction with a menstrual cup.

I know that menstrual cups will likely not be widely accessible but I wanted to include them to confirm that they can be used one handed. I think period panties have the potential to be potentially useful to more people if only they weren’t so initially cost prohibitive. Particularly for people who find that pads set off sensory overload.

I hope that people find this helpful. I would also like to ask again that people whose needs differ from mine please share their own experiences either in the comments or in their own blog posts.

 

*This is not a sponsored post. The discount code is available to share for anyone who has previously bought Thinx. I do however get an equal discount for everyone who takes advantage of it.

 

 

 

No, Your Violence and Lack of Accommodation is Not Our Fault

So, a disabled woman set off the metal detector at an airport. This triggered additional screening. Her mother attempted to inform the TSA agents of her daughter’s needs. They ignored her. The woman became confused and tried to get away from the TSA agents. They tackled her to the ground and left her bloody. She was arrested (though the charges were later dropped.

Not surprisingly, the TSA and police are being sued over this. What I would like to talk about is the TSA’s defense of their actions. They are crying ignorance. Apparently, the woman’s mother telling them that her daughter is disabled and might become confused before the situation escalated was insufficient. They suggest that the woman and disabled people generally should call ahead to inform airport staff that they are disabled.

UM WHAT?

Not only is that not likely to have changed this situation. It is also an absurd burden to place on disabled people. We might as well hire town criers to precede us every where we go, ringing bells and yelling “Hear ye, hear ye, Cripple approaching”.

Now, I know that many disabled people do have to call airports ahead because they require assistance either navigating the airport or boarding the plane. I also know that for every person that I know who requires that assistance that I have heard at least one horror story. Stories that range from having there assistance requests lost (more or less reinforcing the idea that calling ahead was all that was required to avoid the violence exacted on that woman) to being left alone in the “accessibility lounge” for hours while being actively separated from travel companions.

It’s bad enough that systems aren’t in place to accommodate disabled people without advance warning (thus giving people an excuse to fall back on when a space isn’t accessible) but to suggest that we should have to announce our presence in situations we weren’t even expecting to require accommodations is absurd.

Violence against disabled people by law enforcement agencies is hardly rare. It is not just in airports. Should we also call the police non-emergency line every time that we leave our homes and provide them with a detailed itinerary and list of our diagnoses and symptoms? Just in case we have an unexpected interaction with police while we’re out?

I mean law enforcement (the TSA included) is totally equipped to keep track of every disabled person (and their specific needs) they might interact with in a given day; as long as we call ahead right? It’s not like there are very many disabled people or that our needs are particularly varied or complex.

The answer is clearly not to give people in positions of authority (particularly where they have training in responding with force) to be aware of the needs of disabled people. Particularly, in scenarios where there is someone trying to inform them of that fact.

It is not our responsibility to anticipate and stop violence against ourselves. We couldn’t if we tried. It’s a completely unrealistic expectation.

It is far more reasonable to expect people in power to be educated about disability and to listen when they are told that they are dealing with a disabled person and act appropriately.

It should go without saying that the appropriate action in this case was not violence.

 

The Scapegoating of Disabled Voices & Activism

I really wish I could stop talking about Me Before You, but it keeps being a source of topics that require discussion. At least this time I can leave behind the book itself, I will instead try and tackle some of the things that have come out of the disability community’s backlash against the novel and film.

In my original post on the book entitled Why are You Complaining? Some People Actually Feel that Way. I tried to take on the all to common defensive argument that as long as some people actually experience certain things or opinions, any and all fictional representations of those experiences is acceptable. I wrote,

Here’s the thing, there is a big difference between actual human people having feelings about their actual lives and experiences of disability (which I’m not here to criticize) and a fictionalized account written by someone who isn’t disabled and which heavily romanticizes very problematic stereotypes about disability (which I am absolutely here to criticize).

Not surprisingly, people still tried to jump on the “but some people feel that way” bandwagon. The thing is that beyond outsiders pointing to their general existence, the voices of disabled people with nonterminal conditions who are or think that they might one day want to seek assisted suicide were glaringly absent. So I went looking for them.

It wasn’t easy, disabled people who are contemplating assisted suicide or who even simply have a more permissible attitude toward it often feel alienated from the rest of the community (which is a problem that requires addressing). Any discussion that includes an individual suggesting that they might one day want assistance with dying (or even expressing a not hardline stance against it) is almost immediately confronted by someone saying,

  • It is not better to be dead than disabled
  • There need to be more treatment and service options for disabled people
  • Ableism teaches newly disabled people to hate themselves
  • The risks of assisted suicide being legalized are too great for disabled people who will be at risk of coercion.

I did however eventually manage to speak to a few people on Twitter. I’m not going to link to any of them because I have witnessed some of the backlash they experience and don’t want to add to it.

The thing is, the more I spoke to them, the more it became clear that these people did not remotely fit into the strawmen arguments of people saying “but some people actually feel that way”, The people saying this, do so with the uninformed conviction that any disabled person who contemplates assisted suicide, does so for the same reasons as the fictional Will Traynor, that reason is that life with a disability is not worth living.

The thing is, not a single person I spoke to agreed. The primary reason for considering assisted suicide was pain (side note: anyone who tries to rebut this in the comments with “they just need better pain management” or “this is just a reason for more pain management research” will have their comments deleted). In every single case, they unequivocally denied the idea “that it was better to be dead than disabled”, They were also all in agreement that the book and film Me Before You was a horrible representation of disability and why someone might want to seek assisted suicide.

Most also expressed concerns about the legalization of assisted suicide that mirror those of people who are fully opposed to it. One going so far as to say that despite her own contemplation of assisted suicide, it should remain illegal because the threat to disabled people was to great to balance out the good it could do for the few who really need it.

At no point did I come across a real life Will Traynor, whose interest in dying mirrored the fiction created by Jojo Moyes. That is not to say that they don’t exist, I’m sure they do and I’m also sure that they don’t hang out on disability twitter, so the odds of my finding them are slim. Which is really to bad because then it might be possible to deconstruct how and why they feel the way that they do. It is hard to fight an ideology that we can’t even engage with. This is one of the many reasons that I think the wider disability community needs to start being more accepting of and dialoging with the people in our community who contemplate assisted suicide, because they exist in opposition of wanting death solely because of disability. The add a viewpoint that actually reinforces and maintains the concerns of people campaigning against assisted suicide and destabilized the all to common mainstream media view that it is disability for its own sake that should be escaped from through death.

On a more personal note, I have also found my words on Me Before You used to reinforce the pro-life agenda. Which is both abhorrent to me as a pro-choice feminist but also odd because as my quote above suggests, I don’t actually condemn anyone’s personal feelings on assisted suicide but rather how harmful fictional representations of assisted suicide and disability can harm and misrepresent disabled people.

The pro-life lobby is not an ally I want, they care far more for their political and religious agenda than they do for disabled people. They don’t affirm the lives of disabled people or care to fight to stop the ableism or lack of services that affect our lives, they also put me in the awkward position of defending Me Before You as their hyperbole on the subject can only undermine, thoughtful informed criticism of the story. One piece that linked to my blog said,

I haven’t (and probably won’t) see the movie, because I prefer to remember Finnick losing his life in a heroic act of self sacrifice in the fetid sewers beneath the Capitol, not (spoiler alert) committing suicide while his approving-yet-heartbroken girlfriend holds his hand, and the bottle of pills.

Um, Louisa never supports Wills decision, saying she comes to terms with it is better but also pushing it. Also she is also not holding the bottle of pills. Also that’s not how assisted suicide works. Pro-lifers like this blogger like to use buzzwords like “the essential value of life”. They however seem to care much less for the quality of that life because they don’t talk about the need for services, ableism or poverty. They only care that they can slot disabled people’s voices into their agenda. These are the same people who use children with Down Syndrome to try an limit access to abortion. With the same platitudes about the intrinsic value of life and no words on making the world welcoming for those children.

In this case people slot our words into their arguments, while in the case of the “people feel that way” crowd, they just assume they know what the arguments are. In neither case does it do justice to our opinions or our activism. In most cases it actively devalues them by either misrepresenting them or shrouding them in hyperbole to shore up arguments that we didn’t sign up for.

In all cases we are straw men whose actual voices and opinions don’t matter as much as the one’s that they can put into our mouths.

 

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

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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

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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.