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.

 

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The Flaws in Literally Checking Your Privilege

A couple years ago Buzzfeed published a quiz called How Privileged are You? It contains 100 statements of which the quiz taker is supposed to mark each which applies to them. Each statement is meant to be a point of social and cultural privilege. I have noticed that the quiz is being shared again so I wanted to comment on it and how I feel it can be used but also that it needs to be acknowledged that there are serious flaws in its design and delivery.

The quiz is presented largely without context, it does not discuss the role of intersectionality or even how some of the things that limit privilege for some people may actually expand privilege to others.

I expect the quiz is meant to give people a general idea of how someone can exist with both points of privilege and oppression. It could function as a sort of tempering to the “yes, but” arguments that come up far to often in activist discussions, particularly coming from allies who may not want to acknowledge their privileged position because of how they might fall into a different oppressed category.

The problem is, that as I was taking this quiz, I had a lot of “yes, but…” moments and none of them had to do with me denying my own privilege. In fact one of the first statements that gave me pause was “I have never been the only person of my race in the room” the test assumes that being the only person of your race is always due to a lack of power. However as a white person who has not only been the only white person in the room but the only white person for miles, I can say with certainty that my ability to be in that situation was most definitely a point of privilege. A point that was accentuated by the fact that I was treated with undue deference while I was there. I am also aware that in a reverse situation where any one of those people was brought into a majority white context that the situation of respect and deference would not transfer.

The quiz in no way allows for how privilege intersects with scenarios that would be oppressive for anyone who didn’t share that privilege.

The next one that gave me pause was “I have never worked as a waiter, barista, bartender, or salesperson”, the intent of this one is to highlight financial privilege, the fact that a person has never been in a situation that they have had to take work that is considered to be menial service industry labour.

The problem here is that I personally am physically incapable of doing 3 of the 4 jobs listed. It is not a privilege that I have never held those jobs. I have certainly been in financially precarious enough of a position where you are forced to take any job you can get. The problem was that due to disability, many of the so called “low skill” jobs aren’t even options for me.

This last issue is compounded by how little consideration disability is given on the list. While every other area of privilege and its corresponding oppression used in the quiz (race, gender, sexuality, class, affluence, etc) is given a number of points that deal specifically with the experience of those identities like,

“I have never been told that I am attractive for someone of my race”

“I have never doubted my parents’ acceptance of my sexuality”

“I have never been catcalled”

Disability however is given no nuance, it only has statements like ” I do not have [insert type of disability]”. There are only two statements that might be considered to be about the experience of disability, first “I can afford medication if/when I need it”, though this is not a situation that is as much to do with poverty as disability. There are also two statements dealing with either considering or attempting suicide. There are no statements like,

“I can make spontaneous plans without worrying that the place I want to visit will be physically accessible to me”

“My parents were never advised to institutionalize me”

“I have never been denied a needed work/school accommodation because someone decided it would give me an unfair advantage”

According to that list our oppression stems from out disabilities themselves and reinforces the idea that disability itself is horrible by having the only lived experience context be poverty and suicide, with no mention of how we are treated.

In this way the quiz actually reinforces the oppression of disabled people because rather than highlighting the privilege of not dealing with disability discrimination, the privilege lies solely in not being disabled.

I do understand that the quiz is not meant to be taken while critically analyzing each point of privilege because doing so only lends itself to the sort of “yes, but…” thinking used to deny personal privilege and by extension, the oppressions that must continue to maintain them.

The problem is that the quiz is delivered with no context, there is no disclaimer that acknowledges that due to the intersection of privilege and some of these statements, not everything will affect everyone equally. There is no acknowledgement that the quiz is incomplete and that some statements associated with privilege may actually mean disadvantage. there is equally no mention that due to various privileges of the people who compiled the quiz that not all oppressions might have been dealt with accurately or equally. There should also be a statement explaining that the score you receive at the end will almost certainly be inaccurate because of the aforementioned flaws and that depending on considerations of intersectionality it may be higher or lower.

Being aware of one’s privilege and how it interacts with experiences of oppression and how an individual can experience both privilege and oppression is important and quizzes like this one can be a useful tool to illustrate this but by simply releasing a quiz where all points are presented to have the same impact on everyone that they apply to. This is false. A point that is oppressive to one person can very well be a point of privilege to someone else, the reverse is also true.

I know that it would be impossible to deliver a quiz like this that is flawless, that would consider those intersectionalities and was completely free of the bias of the creators but without acknowledgement of those flaws, you will end up just reinforcing the knee-jerk “yes, but…” reactions that enter into discussions of privilege and oppression. So I wish that at the very least the test had been delivered with a disclaimer rather than simply released without context or commentary.

If it had included that context it would have been a more effective tool in starting conversations about the complex nature of privilege and oppression and how those two things intersect.

Privilege isn’t a checklist, it is far more complicated than that. For true or at least better awareness of privilege, it must come with an acknowledgement of how intersectionality functions, not simply the idea that someone can experience both points of privilege and oppression.

 

 

 

Media Roundup of Me Before You Criticism

This is a collection of the criticism by the disabled community and allies of the book and film Me Before You. I have also included some mainstream media coverage of the criticism and protests. If I missed anything let me know in the comments or on Twitter.

Disabled Community & Allies

“Ableist, Stereotypical, and Offensive” or: Why I Hate “Me Before You” by JustHappenToBe

Boycott – Me Before You – “disability death porn.” by Alex Schadenberg

And Now a Word From the FuckAbilityTM Research Council on the Film “Me Before You” by Ingrid Tischer

A Second Class Existence: Me Before You Gets It All Wrong by BadCripple

Me Before You; Why It’s Not Okay by Bloo ‘n’ Stuff

Hey “Special Needs Parents”! Where’s the Outrage over “Me Before You”? by Meriah Nichols

Hollywood Lies: I Prefer My Disabled Girlfriend Alive by Wilfredo Rodriguez-Lopez

Hollywood Promotes The Idea that it is Better to be Dead than Disabled by Dominick Evans

Me Before You by Jojo Moyes REVIEW + Ableism Discussion by Between Chapters

“Me Before You” Film Panned by Not Dead Yet UK by Not Dead Yet UK

Me Before You: My Thoughts by Around and Upside Down

‘Me Before You’: Not for Me Thanks by Mik Scarlet

“Me Before You”: The Fetishization of Disability by Pretentious Best Friend

Sam Claflin Ends Twitter Chat on #MeBeforeYou: After Disability Activists Fight Against the Film’s Ableist Message by Dominick Evan via Storify

Spare me, “Me Before You”: Hollywood’s new tearjerker is built on tired and damaging disability stereotypes by Emily Ladau

Stevie Wonder, Me Before You, and Feerless by Annie Elainey

The film ‘Me Before You’ is disability death porn. That’s why we’re boycotting. by Alex Schadenberg

Book Review: Me Before You by Jojo Moyes by Tonia Says

Trop Moche la Vie: Riches Mais Handicape(e) (in French) by auxmarchesdupalais

Truth Before Lies by Tourettes Hero

‘Why Are You Complaining? Some People Actually Feel That Way’: A Critique of ‘Me Before You’ by CrppledScholar (Me) originally published on this blog here

Why I Blocked All Advertisements for “Me Before You” by ClaimingCrip

#LiveBoldly…Unless You’re Disabled? by IsaJennie

Why I hate Jojo Moye’s Me Before You by Shane Clifton

Why New Film Me Before You Misrepresents the Lives of Disabled People by Lauren West

‘Me Before You’, right or wrong? by Poppy Hasted

Activists protest outside premiere of ‘disability snuff movie’ by Disability News Service

Me Before Ableist B.S. by Allegra Keys

People Who Use Wheelchairs Don’t Actually Want to Kill Themselves by David Bekhour

Me Before You: or If You Die, I Can Live by Ashtyn Law

The Reeve Foundation Rears its Ugly Head with Me Before You Press Release by BadCripple

Me Before Ableism #LiveBoldly by Annie Elainey

Before You Show This Film by Discrimination & Disadvantage

#LiveBoldly on 6/2! Join Growing Wave of Protest Against Euthanasia Rom-Com “Me Before You” in Berkeley, CA by Ingrid Tischer

Boo to “Me Before You” by Who Am I To Stop It

Weekly Reading List: “Me Before You” Edition by Andrew Pulrang

Me Before You makes having a disability seem worse than death by Michaela Hollywood

Me Before You: Your Disability Representation is Bad and You Should Feel Bad. by Hannah-Rebecca

Everyone Before Me; Or So It Seems by Mik Scarlet

We long to watch disabled characters like us. Instead we get Me Before You by Penny Pepper

‘Me Before You is dangerous; it suggests you’re better off dead than disabled – what an affront to me and people like me’ by Michaela Hollywood

The Five Stages of Grief (When Your Movie Is Criticized for Promoting Dangerous Ableist Crap) by David Perry

Relationship: My Problems with, Me Before You, as a Disabled Dad by Chris Wylie

Owl Debates Ep1: Me Before You (Pre-Watch) & Disability Representation

 

Me Before You; Popular Defence Arguments by Bloo ‘n’ Stuff

Me Before… Who? by Lynn Hsu

Dear Jojo by Tourettes Hero

How the Weepy Fantasy ‘Me Before You’ Infantilizes the Disabled by Kristen Lopez

Me Before You (2016) Trailer Commentary by Gold Pictures

Oh, And The Guy In The Wheelchair Commits Suicide by Howard Sherman

I am Not Your Plot Device by Stephen Spohn

“Me Before You” Celebrates the Romance of Exploitation by The Independent Critic

 

 

Mainstream Media Coverage [editors notes: a technical glitch resulted in the loss almost all of this section. Please send me links via the comment section or Twitter]

‘I’m not a thing to be pitied’: the disability backlash against Me Before You by Ryan Gilbey via The Guardian

 

Why Are You Complaining? Some People Actually Feel That Way: A Critique of Me Before You

Warning: This post includes comprehensive spoilers for the book Me Before You, a book that deals with disability and assisted suicide. It also deals with sexual assault.

 

It has taken me months to get all the way through Jojo Moyes’ 2012 novel Me Before You. This protrated reading can be explained by two things. I’m a PhD student and don’t have a lot of free time for reading anything that isn’t directly related to my studies and the fact that this book made me feel violently ill. I hated it, well before I got to the ending. The only reason I finished it is because the movie adaptation is coming out next month and I felt the need to thoroughly explain why it is so problematic and why I find the excitement over the movie adaptation so troubling.

I only became aware of the existence of this book after the trailer for the film adaptation began making the rounds of Facebook, always accompanied with captions like “I can’t wait to see this” or “This is going to give you all the feels!!”. Basically all of these posts were coming from nondisabled people. The trailer (which gives away basically the entire plot) already troubled me (see below).

It’s a film about disability and assisted suicide which is troubling enough but is made worse by the fact that it uses a nondisabled actor (Sam Claflin of the Hunger Games franchise) in the role of a quadriplegic (to read more about how this is problematic see what I’ve written about cripping up here, here, and here). Now I’m sure this casting decision was made because after an exhaustive casting search, the producers could find no self-respecting quadriplegic actor willing to be associated with this bullshit and nothing whatsoever to do with the fact that they definitely didn’t even look at quadriplegic actors *sarcasm*.

Before I get into my thoughts on the book, I want to deal with what I expect is the most common rebuttal to disabled people criticizing problematic media portrayals of disability, particularly around assisted dying.

A disabled person will identify problematic themes in the media portrayal and almost immediately upon voicing those concerns, someone will pop up and say “But, there are disabled people who actually feel that way, so who are you to criticize?”

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). I am also here to criticize the fact that the nondisabled media heavily over-represents disability discourses that fit into ableist stereotypes, which makes it harder for the viewer to differentiate between the feelings of individuals and the experiences and feelings of all disabled people. So if you find yourself asking that question, also ask whether you are hearing other opinions and whether those opinions are coming from actual disabled people or are they the fictionalized imaginings of nondisabled people.

Me Before You falls into the latter category and is rife with deeply problematic themes which include.

  • The constant reinforcement of negative feelings towards the experience of disability from  nondisabled characters with rare and problematic exceptions.
  • What sort of negative life experiences from which someone can move on and live a good life.
  • The constant juxtaposition of disability vs. nondisability
  • Horrible representations of disability and sexuality.
  • What the outcomes after the death of the disabled character meant for the other characters.
  • The impact of how fictionalized accounts of negative experiences of disability have on the disabled community

In brief Me Before You tells the story of Louisa Clarke who is recently unemployed and whose family relies on her having an income. She takes a job of a companion to the wealthy Will Traynor who was paralyzed after being hit by a motorcycle. Unknown to Louisa, she has been hired primarily for suicide watch as Will’s parents are concerned that he will make a second attempt at suicide. Also unknown to Louisa is that Will intends to seek physician assisted suicide after six months (his parents are aware of this and have agreed to assist him in going to where it can be legally acquired). After Louisa eventually discovers Will’s intentions, she decides to use the remainder of the six months convincing him to live. He on the other hand is both intent on dying but convincing Louisa that she is not living up to her full potential. During this period, they fall in love but ultimately Will decides to go through with his decision to die. He leaves money to Louisa so that she can be free of the financial insecurity which led her to work for him in the first place and live her life to the fullest.

When I was still in early stages of reading the book two things struck me. First the repeated disgust expressed by Louisa for assisting in the toileting needs of disabled people. I know it’s something that many people would feel genuinely uncomfortable with but it is reiterated so frequently in the first three chapters of the book as to leave the reader with the distinct impression that disabled people and their needs are disgusting.

The other thing that struck me and genuinely made me furious is that Will’s mother does not tell Louisa that she is being hired for suicide watch. It is heavily implied and even if I didn’t know the outcome of the novel before I started reading it, it is readily identifiable to the reader but not so much in a way that is clear to Louisa. This is really something a person needs to know. Not only to do their job effectively but also so that they can be aware that the person they work with might self-harm or commit suicide. This is for the benefit of the employee so that they can make an informed decision about whether or not they want to put themselves in a work environment that has the very real potential to be traumatic.

Instead the fact that Louisa doesn’t know just adds tension for the reader and the inevitable and completely avoidable drama that ensues when Louisa overhears Mrs. Traynor tell Will’s sister about his intention to seek assisted suicide, which is when Louisa realizes not only why she’s been hired but that Will is going to die regardless. Needless to say, she doesn’t take it well.

Manufactured drama around something life and death with the potential to be harmful to the person who doesn’t know and reasonably should, is deeply problematic. While someone shouldn’t feel compelled to publicize their desire to seek assisted suicide or the fact that they attempted suicide when the former request was denied. There are people who do need to know, not only to do their jobs properly but to protect themselves emotionally. The Traynor’s also hide this fact from Nathan, who take care of Will’s personal and medical needs and this is presented as normal and acceptable.

When it comes to the book explaining why Will wants to die, he actually has very little to say on the matter beyond that it is his choice and that he can no longer find value in his existence as it does not match what he used to be able to do. He also (completely reasonably) chafes at the negative reactions he gets from other people which range from everyone thinking, they know how to treat his medical condition to just being generally uncomfortable in his presence.

The main source of rationalization for why he should want to die actually comes from other people who are usually (with one exception of a guy on a message board) not disabled themselves going on about how if “they were like that, they’d want to die too”. even Nathan, Will’s care aide says it.

Louisa (because let’s be clear this book is about her, not Will) is constantly confronted by people who reinforce the idea that it is better to be dead than disabled.

This trend of people being either just uncomfortable with or actively horrified by disability is almost universal. Generally the best reactions will gets are paternalistic and pitying. Though admittedly Louisa’s parents’ don’t support him dying. Though that seems more a reaction to the effect his death will have on their daughter than him. Her mother compares Will to the only other disabled character in the book, Louisa’s grandfather, who unlike Will is described as not having the ability to make decisions for himself. The comparison is weak.

There is only one character who treats Will like a human being from the beginning. She appears only briefly while Louisa and Will attend the wedding of his ex-girlfriend. The tokenism of her complete comfort with and acceptance of Will is so stark that I would classify her as a magical crip whisperer. It makes her seem extraordinary when in reality the otherwise totality of others’ discomfort with him should feel contrived.

Sure social discomfort with disability is widespread but it’s a bit unbelievable that in 2 1/2 years, you only interact with one person who isn’t at least initially uncomfortable. Of course the magical crip whisperer is a former politician who worked with disabled people, because who else is there to not be horrified when faced with a guy in a wheelchair?

Beyond Will, there are no other real disabled voices in the novel. Louisa’s grandfather is primarily presented as loved but ultimately a burden. The only other time the reader hears from other disabled people is when Louisa seeks advice on a message board online. While most of those messages are described as being positive and defending the idea of living a valuable life with disability, they are not featured but merely mentioned. Instead Moyes chooses to feature a post from someone who agrees with Will. Ultimately the voices of alternative opinions are acknowledged but given little to no direct attention even though, it is suggested that there are more defenders of living with disability that people who want to die.

Instead Louisa uses the message board to get suggestions about how to cheer Will up and find accessible outing ideas. This is admirable but a lost opportunity to show that there are other disabled voices.

In the midst of Will’s quest for death, the reader is also presented with trauma from Louisa’s past. The book portrays her as underachieving and Will is constantly trying to get her to aspire to more. The book initially sets up that Louisa lives in the shadow of her sister who was was labeled the smart one from childhood and thus the one expected to succeed.

This however, wasn’t enough reason for Louisa to not feel good enough. Instead Moyes decided that she needed a traumatic past to further reinforce it. So it is eventually revealed that several years ago Louisa was raped–minor break for feminist rant… Seriously, why do women have to be assaulted for character development? Particularly when the book has already provided a violence free sibling rivalry and childhood socialization–It is after this assault that Louisa stops aspiring to take risks and do things like travel.

This traumatic past also allows for Louisa to “overcome” the effects of her rape with Will’s help including a scene blatantly ripping off Good Will Hunting where Will repeatedly tells Louisa that it isn’t her fault.

It’s bad enough that rape was used as character development but it is made worse when it is clearly something Louisa is meant to get past with Will’s assistance but Will isn’t supposed to learn to live with being paralyzed. It clearly sets up the idea that people can and should be expected to come to terms with certain kinds of trauma but not others.

It also throws a wrench in the idea that the book puts a lot of importance on autonomous choice. The book only really cares about personal choice for Will but has no problem with Will, pushing, prodding and bullying Louisa out of her shell and making value judgements about how she lives her life from her choices in employment to her boyfriend. Even though Louisa by all accounts loved her job working in a cafe (the job she had prior to working with Will) it isn’t good enough and is presented as evidence that she isn’t living life to the fullest. Ultimately giving the impression that there can be no full life after disability.

This is repeatedly reinforced by both the stark difference between the physicality of Will and Louisa’s boyfriend Patrick and how Will was before his accident. If people are going to continue to produce stories about people becoming disabled (whether they seek death or learn to live life happily with their disability). just once I’d like that person to be average. They never are though and Will Traynor is no different. He was active, played sports and was very athletic. This for some reason makes his paralysis more tragic as if he lost more and this is why he is unable to come to terms with being quadriplegic.

Then there is Patrick who is in peak physical shape. He’s a personal trainer who’s obsessed with running. It’s as if he exists solely to be Will’s oposite. He certainly has basically no other personality, other than to say offensive things about disabled people and have awkward passionless sex with Louisa and generally be an ass hole.

Which brings us to the representation of disability and sexuality. I was hoping considering the cringeworthy sex Louisa was having with Patrick, that once she and Will fell in love there would at least be a good sex scene between the two of them (this is supposed to be a romance novel after all, I have expectations). This did not happen. Even though the sex between Luisa and Patrick is clearly meant to be seen as unfulfilling and there is one instance where the fact that disabled people have sex is acknowledged (though it’s by Louisa defending Will’s manhood).

As blogger Pretentious Best Friend puts it in their review of the film. to be released in June.

What I find more distressing, though, is how the film blatantly uses Will’s disability as a shorthand for chastity fetishism.  Twilight and Fifty Shades of Grey have popularized chastity fetishism by substituting sexual attraction with attraction to danger, which leads to problematic romanticism of physical and emotional abuse.  Me Before You takes the opposite tactic, by making Will so nonthreatening that he can’t even be conceived of as a sexual being.  His relationship with Louisa has no chance of sexual culmination (at least according to the logic of the film), so Louisa is free of the usual pressures placed upon women in relationships and therefore can pursue Will without being concerned that she will be expected to consummate their love.  This is exemplified by the fact that the film’s most romantic scenes (and a few comic ones) are of Louisa acting as a caretaker, and that Louisa doesn’t even bother to break up with her current monogamous boyfriend as she spends more and more time with Will.  Again, I understand the appeal of a platonic, nonsexualized romance, but it cannot come at the expense of the dignity to either party of the relationship, and Will’s portrayal deprives dignity to an entire class of disabled persons.

The book suggests the possibility of sex between Louisa and Will and even briefly addresses the ethical concerns of a relationship between a disabled person and their carer but nothing comes of it beyond a couple of kisses. When Louisa suggests moving their relationship in that direction Will vetoes the idea because,

I don’t want you to be tied to me, to my hospital appointments, to the restrictions on my life. I don’t want you to miss out on all the things someone else could give you. And, selfishly, I don’t want you to look at me one day and feel even the tiniest bit of regret or pity that—…You have no idea how this would play out. You have no idea how you’re going to feel even six months from now. And I don’t want to look at you every day, to see you naked, to watch you wandering around the annex in your crazy dresses and not… not be able to do what I want with you. Oh, Clark, if you had any idea what I want to do to you right now. And I… I can’t live with that knowledge. I can’t. It’s not who I am. I can’t be the kind of man who just… accepts.” (pp. 325-326)

He completely rejects that her feelings for him could be genuine and forgoes the possibility of a sexual encounter that he desires because it wouldn’t be how it was before his accident, assuming that this could never be as good. It is again an example where only his opinion matters. While he can and should be allowed to decide whether or not he embarks on a sexual relationship, the fact that he uses the hypothetical of Louisa losing interest in the future rankles. He spends so much of the book demanding that his wishes be respected but refuses to even legitimize Louisa’s feelings.

His refusal is portrayed as self sacrifice for her benefit.

Ultimately his death at the end of the book is to her benefit as well. He leaves her money so that she can pursue the dreams, he told her to have. His death is also the catalyst for his parents divorce, so his father can go off with his mistress.

In perhaps an attempt to show that there were consequences to his decision for those around him and that his choice was not simply ridding him of the burden of his care, his parents’ divorce is rather minor. His family and Louisa are investigated for helping facilitate his death in Switzerland at Dignitas. While they are all ultimately found to be innocent, Will’s mother resigns from her position as a magistrate as a result of the scandal. Also in order to solidify the idea that the reader really is meant to dislike Patrick, Louisa’s now ex-boyfriend, he sells her story to the press and subjects her to a great deal of media scrutiny.

Ultimately, Will’s disability and death are used as stories of disability so often are in fiction as a catalyst for another character. His choice comes off as shallow even though it is heavily legitimized throughout the novel, because ultimately Will and everything about him really only serve to propel Louisa forward, to get her to realize that her life is in a rut, that she deserves more, she should strive for more, her life has more potential. A potential it wouldn’t have if Will chose to live because she would be tied to him instead of pursuing more education or traveling to Paris, which her inheritance allows her to do.

This kind of media is harmful in ways that giving genuine legitimacy to the voices of disabled people isn’t because if you listen to actual disabled people rather than using them as hypotheticals to defend stories like this, you get nuance even if they want to die, you hear about why. You might also hear from people who love their lives. However, while the existence  of people “who really do feel like Will Traynor” are held up a red herrings, far to much of the media representation of those feelings is fictional but people seem to accept is as real.

As Dominick Evans says in his take on the book and film,

The disability community is sick of seeing films where disabled people are misrepresented. Part of this is because we are not included, anywhere. We were not consulted for the script. A wheelchair user did not write the script. Even the main actor is an able-bodied actor, which prevents him from knowing how accurate his acting, how harmful his portrayal, and how inauthentic the script really are. Without including the disabled voice, non-disabled Hollywood continues to make life harder for us, because this is all people see, and they assume it’s true.

There is also a problem with how gleefully nondisabled people seem to adopt the idea that it is better to be dead than disabled citing “the people who really feel that way” but rarely is ever actually engaging with those people and certainly never engaging with those who don’t agree because let’s be honest, they only bring up the former to silence the latter.

New Zealand YouTube series The Daily covered some of the issues of the proliferation of the idea that it is better to be dead than disabled here,

There is so much more wrong with stories like Me Before You than the fact that the disabled person wants to die and so critiquing this kind of media is far from a tactic to silence disabled people who may want to die.

I however can’t help but feel that the tendency to jump on the “but some people do feel that way” when it doesn’t come either from someone who does or at least with more nuance relating to the critique it’s aimed at is just an expression of how people want to view disability, rather than a way to respect the fact that different disabled people perceive their lives in many ways.

** Me Before You quote taken from the Kindle Edition which I’m choosing not to link to

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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.

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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.

 

 

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Bad Crip: A Probably Not Comprehensive Definition

Bad Crip

Bad Crip: noun [bǽd krɪ́p]

A disabled person who has ever been or is any one or a combination of the following according to a nondisabled person/people;

  1. is not disabled enough (someone who wants accommodations even though there are totally more disabled people who “deserve” to be accommodated more)
  2. is too disabled (someone who asks for accommodations that actually require work to provide)*
  3. can do something a nondisabled person assumed that they couldn’t
  4. couldn’t do something a nondisabled person thought they should
  5. doesn’t “look disabled” (oh I’m sorry, I forgot to dress up as the International Symbol of Accessibility today)
  6. isn’t being inspirational™ right now (see also: Supercrip)
  7. isn’t letting a nondisabled person be inspirational™ for helping them just because the nondisabled person wants to (see also: Charity Poster Child)
  8. doesn’t feel like answering a nondisabled person’s unsolicited questions about their personal medical information (thinks they should have the same right to privacy as everyone else)
  9. wonders why if nondisabled people are so obsessed with their personal medical information, their actual medical diagnosis can’t seem to make it past spellcheck (hemiplegia? I think you actually mean paraplegia)**
  10. doesn’t feel like explaining that “yes disabled people have sex too” to random nondisabled people who think it’s ok to ask strangers about their sex lives (because apparently this is still something people are confused about)
  11. doesn’t care about the unsolicited medical advice from complete strangers (yes we’ve heard of that cream, it’s effects have nothing to do with us)
  12. doesn’t care if you pray for them to be healed
  13. doesn’t think they need to be healed at all
  14. expects nondisabled people to include disabled people in conversations that impact them rather than just accept whatever solutions nondisabled people come up with (otherwise known as: so you’ve come up with a “solution” that doesn’t address disabled people’s concerns and somehow still manages to maintain the status quo)
  15. thinks that they are a human being and deserves to be treated like one
  16. and is generally completely fine with being disabled.

 

Did I miss anything?

*It is somehow entirely possible to be both not disabled enough and too disabled at the same time.

**According to spellcheck, I don’t exist

Update

Because of course I missed things

Embeded tweet from Pamela Hope reads

17. Shuts down able-splaining.

18. Talks about ableism.

19. Has/Hasn’t $.

20. Doesn’t ask permission.

Oranges, Access, Opposition and “Yes, but…”

As things begin to cool down on the discussion around whether or not Whole Foods or other grocers should sell peeled oranges (you can read about how that all started here). I would like to take the time to look back at the discourse and unpack some of the things that came up again and again.

One of the most sweeping arguments used to silence disabled activists in the debate was the argument that “the discussion was about the environment, not disability”. The thing is you can only have one without the other if you have somehow managed to exclude disabled people from the human race. There are about a billion of us after all so that’s a big erasure.

I would also like to reiterate that disabled people have as much a vested interest in protecting the environment as everyone else. Which is why it’s so frustrating that requests to be included in the conversation were often brushed aside. I think it’s also worth mentioning that the way people tried to curb to growth of the disabled population was to sterilize them. Which I can say with all due sarcasm was a complete failure.

Disabled activists have been aware of the negative impact of industrialization on people’s health since the early 20th century. Helen Keller (who was a bad ass) linked industrial working conditions to disablement in the 1920s. She advocated for better working conditions but was brushed off.

Fast forward to this century and we’re still hearing about how conditions in factories are causing unnecessary disablement (I think we all remember the Apple factory scandal).

Being aware of and fighting for the environment keeps people healthier. Beyond that when considering those of us who are already disabled, we will be joining you in either that greener future or that environmental wasteland should sustainable initiatives fail.

Someone  who commented on my previous blog post pointed out that disabled people would not fair particularly well in a dystopian wasteland. Which is  true, but on the other hand we are equally unlikely to thrive in a green utopia built on the understanding that are needs are secondary and can be put aside until the planet has been saved. It is a far easier thing to build in accessibility as you go forward then it is to add it in later. Particularly when the rhetoric going in is that we have to wait. How great do you think the drive to implement accessibility will be when our concerns have been constantly sidelined?

And we absolutely will be in that future with you, disability isn’t going anywhere, even if the current population dies off, more will be born or made through accident or injury. Disability is a permanent part of humanity, better get used to that now. We’ll all be happier for it in the end.

This debate has never been about sacrificing the environment for the sake of disabled people but asking to be considered as part of the solution.

When I engaged in debate with people, I begged them to try and consider intersecting environmentalism with accessibility and was almost universally met with a wall of “yes, but…”, rather than engage with the idea that we should try and find a way to do both accessibility and sustainability, people tried to smugly shut the whole conversation down. I will now deal with some of the big ones.

Yes, but plastic is bad.

I’m totally with you, which is why I want things to be sustainable and accessible. For example looking at alternate ways to package prepared fruits and vegetables that would be more sustainable.

Yes, but those Whole Foods oranges cost like six bucks apiece, that’s not very accessible is it?

Again, you are totally right. The thing is Whole Foods is not the only grocery store and this whole discussion really needs to be bigger than Whole Foods, for accessibility to be meaningful it needs to be as widespread as possible and Whole Foods is hardly the only grocer to include precut or prepared fruits and vegetables.

Also for context things that are accessible are far to often more expensive, that’s not a reason for the thing to not exist, it’s a reason to challenge why things that benefit disabled people tend to cost more.

Yes, but Whole Foods pulled those oranges…

I already covered why this needs to be bigger than Whole Foods but the situation is actually more complicated. Sure Whole Food’s pulled those specific oranges and sent out this cheeky tweet

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

The thing is this tweet is just pandering to the people who were so furious in the first place. Whole Foods later confirmed to Upworthy that.

“Many of our customers love the convenience that our cut produce offers, and this was a simple case where a handful of stores experimented with a seasonal product. Orange and tangerine slices have long been a staple favorite in our stores, and we’ll continue to offer them alone with other sliced produce options for customers who are looking for added convenience. We’re glad some customers pointed out this particular product so we could take a closer look and leave Sumos in their natural packaging — the peel.”

So, they just stopped selling peeled seasonal oranges. Yet they pandered to the group of people who were ignoring disabled people and by extension shutting down disabled people. It was only later that they more quietly confirmed that they still had a wide variety of plastic packaged fruits and vegetables for the convenience of disabled people.

By the time this came out, the internet was already crowing about their victory.

Moving on, probably the smuggest of the Yes, buts was

Yes, but aren’t those plastic containers hard to open if you have limited hand dexterity…

And here you thought you had us. This was actually the most insidious argument against accessibility because if it were to be accepted it would undermine every single fight for accessibility, not just the ones involving the environment.

Here’s the thing, there is no such thing as one size fits all accessibility. Accessibility is always going to need to be looked at in terms of options not a singular fix. Arguing that this helps to few people is to constantly relegate all disabled people to a lack of access to more than just food.

the thing is that looking for sustainable options to accessibility is also a great time to start looking at ways to increase the accessibility thus widening the number of people benefited. It would also help highlight people for whom packaging proves to be to large a barrier, so that we can work to make sure that they to get access to food.

When people had exhausted their “yes, but” arguments, they tended to turn to “what, about…” arguments in which they tried to come up with fixes that still gave them the overall win. Most of these suggestions were met with exasperation from disabled people.

The reason for the exasperation was twofold. Firstly, these suggestions were most often made without actually consulting people on what they wanted, needed or were capable of. So they tended to be both ineffective and left disabled people feeling like the person they were speaking to thought that we had failed a single attempt at peeling an orange and had never considered alternate options. Sometimes these suggestions did come from people who seemed genuinely engaged in the conversation but they were generally nicer in their suggestions and acknowledged from the get go that they might be ineffective. The two most common were.

Have you tried one of those plastic (hey isn’t that the thing that got us in this mess in the first place) orange peelers, BTW you can buy them on amazon?

Yes, I have, it didn’t work.

Have you tried using a knife (occasionally specifying a paring knife)

No, and I’m not going to, that’s a quick way to lose a finger. Limited hand dexterity plus spherical object plus sharp implement is a recipe for disaster.

I was literally begging people for a dialogue but it often felt like talking to a brick wall, at one point I had just told a guy that to truly succeed at accessibility, engaging with disabled people is key when he decided that he had not only solved the orange situation but fixed decades of prejudice as well.

People had been suggesting that we ask people who worked in the produce section to peel the oranges for us. A solution that was widely panned by disabled people for a number of reasons. The suggestion usually went like this

“I work at a grocery store and if a disabled person asked me to peel an orange for them I’d be happy to and I’m sure all of my coworkers would as well”

I’ll take these individuals at their word that they’d be happy to help, I’ll take the fact that they extended the offer to include their coworkers with a huge grain of salt.

There are a number of issues with this scenario.

First we have to find an employee, identify ourselves as disabled and hope they are actually as nice as has been suggested. Then we have to wait while they take our produce somewhere clean so that it can be prepared for us.

So much could go wrong, as I and many disabled asking people for help gets mixed results. Even if they agree they might be busy when we find them so they may say “I just have to finish helping this other customer” or “Just let me finish stocking this shelf” even if they help immediately we still have to wait for them to prepare the food. Our time has value. It is far preferable to just be able to grab what we want off the shelf and go about our day.

What is the person we ask isn’t open minded or decides that we aren’t really disabled or disabled enough to warrant assistance and either demands proof putting us in the awkward position of either trying to justify our disabilities or deciding the violation of our privacy isn’t worth it.

Believe me, doubting someone’s disability and by extension their right to accommodation is real and people get nasty if they think you are either impersonating a disabled person or trying to get special treatment that they don’t think you should be entitled to. The internet is littered with heartbreaking stories of people getting hateful notes on their cars if someone doesn’t think they’re disabled enough to use accessible parking. I actually know someone this happened to (like this one). I have no doubt that even if the staff member didn’t say anything nasty, other customers will.

Sure, we could report abusive staff behaviour to a store manager but that’s just another drain on our time and I’d rather be able to just grab what I want and limit opportunities to experience hateful vitriol.

The guy I was talking about before answered my concerns about abuse with “well, disabled people shouldn’t feel like they have to hide their disabilities and telling people about them will help educate people”.

I would love it if I lived in a world where disabilities could just be a fact of life unworthy of comment, but I don’t live in that world. I live in a world where disclosing my disability shuts me out of jobs (that I’m perfectly qualified for), told that I don’t belong in university (even though my GPA was high). I am so saddened that people think that the onus on fixing discrimination is on disabled people because we can’t. Fixing discrimination needs the cooperation of the people doing the discriminating. Treating disabled people like our needs are special interests is just to be handled not on the same level as those of nondisabled people’s but on a case by case basis by “nice people” reinforces that.

Having to ask for food in a way that isn’t open and available to everyone is a form of gatekeeping and keeps our needs separate and special. This is not the way to equality.

Ultimately, the thing is if we combined the need for sustainability for accessibility, we could go beyond those oranges and start looking at better packaging for everything. I don’t think prepared foods are going anywhere anytime soon. It would be a nice first step to at least start looking for more sustainable packaging to put not only precut fruits and veggies but tubs of spinach and frozen vegetables.

It’s time to look at the bigger picture beyond those oranges, that bigger picture includes disabled people. Please include us in the conversation. Whether it be about food or any other aspect of sustainability.

We started the conversation without you, for more on how this discussion affected us and some of our brainstormed ideas for accessible sustainability click here. Please join in.