Mentioning Disability is not an Invitation for Commentary or an Inquisition

I think one of the clearest examples that I experience regularly that disability is not an accepted experience is that I can’t casually reference the experience of being disabled without being met with either pity or inappropriate questions. Sometimes it is both.

For me disability is a huge part of how I experience the world. It impacts how I do every day things. If it is relevant I should be able to reference it in the same way a nondisabled person talks about their day.

When I reference my disability or how it impacted an activity (like referencing how I had to do something differently than the norm). I am not looking for pity. But I all too often get it.

Or in a situation where I am airing a grievance based on discrimination, where empathy (though I usually get pity) is appropriate, it is misplaced. People are sorry that I am disabled not that I experienced discrimination or prejudice.

I have written about how nondisabled people often treat disabled people like public spectacles before. Here, I’m going to address how casual acquaintances try to legitimize inappropriate questions about disability.

This isn’t about those people who accost disabled people on the street to ask “what’s wrong with you?”

Rather this is about those people who you are conversing with casually who take the remotest reference to disability to ask “what’s wrong with you?” even when that question is not a natural progression of the disability reference.

These encounters often involve social coercion on the part of the questioner to get you to answer.

The scenario might involve a peer at work or a fellow guest at a party. They are people who can have genuine reasons to speak to you. They will also use the circumstance of being at work or surrounded by other people to force compliance because failure to comply could have consequences.

For example, you are attending a bridal shower for a close friend but it is being hosted by that friend’s future in-laws so the only person you really know is the bride. Everyone else is either a future in-law or one of their close family friends. As often occurs in these situations people ask what you do.

For me this brings disability up basically immediately because I’m a Disability Studies student. It’s a miracle is people don’t immediately move a conversation about what I study to what I am. Usually, telling someone you are a student elicits questions about the program and what you are planning on doing after graduation.

Not so if you are both disabled and a student of disabilities. Somehow, people see to think that asking about my medical history is a perfectly natural progression from me saying that I study disability. It is always quite clear in these conversations that people aren’t just ascertaining whether I have a personal stake in my field. That could be more respectfully determined by asking why I chose disability studies.

A question like that also would allow me to determine what information I am comfortable sharing. Demanding someone’s medical information is about entitlement and voyeurism. Waiting for a disabled person to make even the vaguest reference to disability first does not make it more acceptable.

Making that demand in front of other people is just coercive. Particularly if refusing will put you in a awkward position. Either with the questioner or in keeping with the bridal shower scenario with the bride.

I have found that simply telling people that you don’t want to share that information is rarely received gracefully when the request originated as a demand.

People tend to realize that a refusal is also a message that the question was inappropriate so they feel the need to justify their right to ask it and shame you for noncompliance (remember this is not a private conversation but one that is happening in earshot of other people). So they ask follow-up questions.

You’re doing a PhD in disability studies, shouldn’t you want to educate people about disability?

The answer I wish I could give: Yes, and an integral part of teaching about and advocating for disabled people is making clear boundaries. It does not benefit disabled people to reinforce the idea that our lives and bodies are available for public consumption.

Additionally, as you point out I am doing a PhD in disability studies which means that in addition to my years of experience as a disabled person, I have spent years and tens of thousands of dollars becoming this qualified. University professors don’t work for free so why should I? If you would like to agree to an hourly rate, I’d be happy to share my extensive knowledge with you. Like any work arrangement though I have the right to have my medical privacy respected and I will not be sharing any personal information unless I choose to do so.

I am just trying to learn, why won’t you educate me? Don’t you want people to understand?

The answer I wish I could give: Setting boundaries is a lesson in respect. If you really wanted to learn, you would accept that lesson rather than expecting me to give you personal information which in the grand scheme of things would tell you nothing about the experience of being disabled. It really only serves to parrot information that can be found in a medical textbook or on WebMD.

 

Ultimately as much as I want to, I don’t say those things. More often than not I just give them the information that they want. This invariably leaves me feeling horrible. The consequences for noncompliance however are greater. In the bridal shower scenario it would put my friend in the awkward position of either defending me or defending a future family member or friend. Either alienating me from them or them from family.

These more public confrontations risk more than angering a single person but can have wider consequences from witnesses who are often just as curious as the original questioner. It is usually easier and often safer to comply in the short term and if the questioner is someone that you are likely to have repeated contact with (like a coworker) consider taking action to change the environment in the long term.

I wish these interactions didn’t happen at all. I wish people’s express desire to learn was genuine and not a convenient excuse to justify inappropriate behaviour. So in case you do genuinely want to learn about disability and don’t want to be an asshole in the process here are a few tips.

If you are able, make an effort to educate yourself on your own time. Read blogs by disabled people. Read academic disability literature (some disability studies journals like Disability Studies Quarterly are public access and can be read for free by anyone).

If you are talking to a disabled person, don’t take any vague reference to disability as an invitation to ask probing personal questions. Make sure any follow up questions are directly related to the person’s original reference.

Let the disabled person decide how much they are willing to share and respect their privacy and boundaries.

Recognize that diagnosis information often says very little about the actual lived experience of disability and should not be considered essential to learning about it.

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Thoughts on Disability and Brexit

 

I wanted to take some time to talk about the EU referendum in the context of disability. I’m not going to focus on any disability specific policies held by the EU (though I’m sure they exist and Baroness Campbell tried to get disabled people invested in the campaign to Remain).

Instead, I am going to look at ableist responses to the vote to leave and how Britain leaving the EU could further limit the opportunities of disabled Britons to travel.

One of my pet peeves in foreign policy is the discriminatory way that disabled people are treated in immigration (I wrote a Canada specific critique here). Generally disabled people are severely limited if not completely barred from immigrating. The EU offers something of an exception in that it allows free movement for purposes of residency and work between many of its member states of which Britain was one (and still is for at least the short term). If the EU exit negotiations do not include keeping that freedom of movement, the possibility of moving countries will be all but eliminated.

As a side note the fact that Nigel Farage has all but guaranteed that the pro-Brexit campaign promise of spending more money on the UK’s National Health Service was a mistake will of course also negatively impact disabled British citizens.

But back to immigration. For the average nondisabled British citizen immigration is still an option, though it will now likely involve far more paperwork. Paperwork that often requires applicants to include medical information that would exclude disabled applicants.

This reality is frustrating as in standard form in response to an unpopular political shift, people are discussing emigrating. We see this rhetoric all the time (if X politician is elected, I’m moving to Canada), while the words rarely turn into actual action, and are unlikely to unless some of the more extreme and dire Brexit predictions come to pass (World War III) it is frustrating to see people fall back on an option that millions of British citizens just lost.

Add to that the fact that some of the anger over the result of the referendum has taken a decidedly ableist tone and disabled Britons are not faring well in the immediate response to the Brexit result.

The problem here primarily hinges on the fact that the largest demographic which supported the Leave campaign were over 65 while the youth vote overwhelmingly voted to Remain. Anger has therefor been targeted at the elderly with comments about people who are about to die (I was unaware that life expectancy was so low in Britain that anyone over 65 is in danger of just keeling over).

This demographic split has resulted in a lot of youth anger being focused on the senior population, with one person tweeting

The thing is people aren’t supposed to give up their seats to the elderly out of respect. They do it because age is associated with a loss of mobility. Note that the tweet has been shared over 16,000 times.

The tweeter later defended himself by claiming it was a joke but some responders have doubled down and insisted that they are sincere in their support for the tweet, with at least one going so far as to say that he would demand to know how someone had voted before giving up his seat regardless of whether the person was elderly.

The fact that the anger of the vote so quickly turned to ableism is concerning. The fact that it is used against the demographic that most often voted to Leave is bad enough but the fact that people are clearly willing to extend it to people who are not so clearly associated with the Leave result is especially troubling.

This is the danger of falling back on bigotry in the face of political disagreement. It takes the focus away from why the ideological split really happened and far to often spreads beyond the initial target group. Which doesn’t really make for a funny joke, now does it?

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.

 

 

 

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.

 

Yes, I know it’s Fiction, and Yes I’m Still Going to Criticize it

Any time I criticize the representation (or lack thereof) of disability in fictional media, I inevitably get all three of the following responses either in the comments here or on Twitter.

This is fiction, it’s not real, lighten up (often not worded so politely)

If you don’t like it, don’t read, watch or listen to it.

If you don’t like it, write your own book, produce your own movie etc.

All three are silencing tactics and I’ve experienced them all repeatedly as I blog about disability on TV (here, here , here and here) in movies (here) and most recently in my essay criticizing the book ( and soon to be released movie) Me Before You. I think all of these responses are worth looking at in more depth.

This is fiction, it’s not real, lighten up.

Whenever I get this response three questions always occur to me.

  1. Has this person ever taken an English class (or other language class focused on literature).
  2. Do these people also send these messages to university English Departments
  3. Do literary journals get this sort of feedback against other literary study and criticism?

Admittedly the last two are facetious but I do seriously wonder about the first. As I recall of English class after basic literacy and reading comprehension was obtained, we were asked to look at literature in the context of when it was written, what it might mean for today, what is its social impact, etc.

Fiction doesn’t exist in a vacuum divorced from the social context from which it was created. It reflects that social context and the biases of the author.

This is why people who study the play The Importance of Being Earnest for homosexual subtext despite the fact that the play closes with three heterosexual couples becoming engaged and the fact that homosexuality was illegal at the time of the play’s release. They do this because the playwright (Oscar Wilde) was himself gay and the very successful first run of the play was ended early when his trial for homosexuality began.

Wilde’s private life is presumed to have affected his writing even when he was writing about people unlike himself.

Similarly, people find deep seated colonial views in the fictional writing of Rudyard Kipling whose most famous work is The Jungle Book but is also famous for his poem The White Man’s Burden. A poem which clearly dehumanizes the people in colonized places. A poem which was written to expressly defend and promote imperialism.

The ideas he espoused in that poem are identifiable is his fiction including The Jungle Book, to the point that people are concerned that the book continues to be adapted into film (see here and here).

Fiction has also been used to make a point about society and culture, consider George Orwell’s Nineteen Eighty-Four and Animal Farm or William Golding’s Lord of the Flies.

Academics read Jane Austen to get a glimpse of social life in the late 18th and early 19th centuries. They do this because they feel her books lend real insight into the social orders of the time. Let me remind you, Jane Austen wrote fiction.

To fall back on a cliche “The Pen is Mightier Than the Sword” The written word has power, it has the ability to highlight reality or tear down a misconception. But just like a sword in the hands of someone who doesn’t know how to use it, a pen in the hands of someone writing about a group of people to whom they do not belong–and did not particularly attempt to research– can do harm by reinforcing false and negative ideas about those people.

I’ll focus on Me Before You as an example because it is the most current book/film to be criticized by disabled people.

To say that Me Before You stands separate from culture or that its status as a romance novel exempts it from having a social message (another common argument) is plain false. the ideas around disability in Me Before You are nothing new or unique. Consider

Stories that involve disabled people seeking assisted suicide

  • Million Dollar Baby (2004)
  • The Sea Inside (2004)
  • The Bone Collector (1999)

Stories that position disability as an insurmountable tragedy (this list is assumed to contain the above mentioned stories)

  • Jane Eyre (1847)
  • Heidi (1881)
  • The Secret Garden (1910)
  • A Christmas Carol (1843)
  • Lady Chatterley’s Lover (1928)

This kind of story line is far from new and my list far from comprehensive. So I ask at what point does fiction stop reflecting societal and cultural ideals? Because I don’t think it does, particularly when these stories are the dominant ones and alternatives are few and hard to find.

Fiction also doesn’t always stay that way, it has been used to justify horrible abuses against disabled people. In 1920 Canadian Eugenicist Helen MacMurchy published a book call The Almosts: A Study of the Feeble-Minded. The entire premise of the book is that literature rather than science is the best place to find real understanding of people who would have at the time been labeled feeble-minded. She opens the book by saying,

Sometimes the poet sees more than the scientist, even when the scientific man is playing at his own game. The novelist can give a few points to the sociologist, and the dramatist to the settlement worker. Had the voter and the legislator studied with a little more attention the works of William Shakespeare and Walter Scott we might have come sooner to some of the alleged discoveries of the twentieth century.

Take the case of the feeble-minded. They have been drawn from life more than once by the great masters already mentioned, as well as by Charles Dickens, Victor Hugo, Charles Reade, and many other writers, and yet so far at least we do not seem to have taken mentally defective persons in the world as seriously as the great writers who immortalized Wamba, Quasimodo, Barnaby Rudge, Young Sparkler, Mr. Toots, and others, by giving them the entry to that stage which the world may always watch from the windows of the Library.(pp. 1-2)

MacMurchy was no minor character in Canada’s eugenics movement either, she was appointed as Ontario’s Inspector of the feeble-minded in 1906. She is considered to be the individual who had the strongest impact on Canada’s history of eugenics which saw the forcible sterilizations of thousands of people (primarily in Alberta and British Columbia).

So the idea that fiction stays on the page and never impacts how someone sees another group of people, is an argument I can’t get my head around.

Also, if people are unaffected by these stories, why are we still telling them? I’m not seeing a lot of variety in story lines centuries later.

But moving on…

If you don’t like it, don’t read, watch or listen to it.

This argument is mostly answered by my response to the last argument. This is not a matter of simply not liking something, that’s why I don’t eat kidney beans. The thing is, the existence of kidney beans has no real effect on my life as long as I avoid them. However, as I have explained fiction doesn’t work that way, it reflects and reinforces social views and those CAN hurt me and others if ignored.

So np, I won’t be ignoring fiction or media of any kind that perpetuates negative and bigoted stereotypes around disability. NEXT!

If you don’t like it, write your own book, produce your own movie etc.

There are a couple things wrong with this, first of all in most cases this is much easier said than done. Secondly if done it’s generally not done at a level that can compete with the message it is trying to counter.

Let’s tackle the actual doing first. In terms of making movies, people can’t just go do that. You need equipment (which is expensive), training to use that equipment (training that is often also expensive and also offered in ways that are inaccessible to disabled people.

I actually had a guy on Twitter say to these concerns “Just apply for funding, there is so much funding for disabled people”

um… BAHAHAHAHAHA… *sobs* sir please cite your sources.

I personally know so many disabled creators that want to have their work translated to the screen. They lack access to funding, training and the support that is required to make that happen and I assure you it is not for lack of trying.

Writing a book is somewhat easier and appears easier in a time where the internet makes self-publication available to anyone who churns out a book. Which brings us to the next problem, it’s available to anyone who churns out a book. This isn’t just an issue of oversaturation but the fact that a lot and I mean a lot of self published books are terrible, poorly written and poorly edited (if they are edited at all). It’s hard to get noticed in that kind of environment.

Succeeding as a self-published novelist is hard because it’s difficult to get noticed in the deluge of other self-published books (even if yours isn’t one of the ones that suck).

In the context of writing a novel to challenge the messages  of more mainstream books, telling someone to just write there own book,only works of they can compete with books like Me Before You. A book that has sold over five million copies and is now a film. That’s some stiff competition.

You can’t just write a book and drop off the manuscript at Penguin Books or Harper Collins. And access to an actual publisher is necessary to be competitive because, they offer not only the editing needed to make a book the best it can be. They have marketing departments. A little book that is self-published does not. As Penny Pepper points out writing about disability in ways that deviate from stereotypes is hard.

I’ve been writing disabled characters into my work since my teens. Yet the more I wrote about disabled people who loved and fucked and birthed and died, and all the mess and joy in between, the less my work succeeded.

Fighting the status quo has never been as simple as showing up and offering an alternative. People have to want that alternative. Saying that fiction has no power is a way of making people comfortable maintaining their enjoyment of problematic stories without making them think about it. So yes, it may be fiction but it is never just fiction. Ask yourself “what stories aren’t you seeing and why?” ask “whose stories aren’t you seeing and why?” and “who is writing the stories” Because the answers to those questions are important and are very much worth asking.

 

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

 

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

2016-05-03 20.58.37

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

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

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

I first tried the shoes with just my lift

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

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

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

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

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

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

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

Now on to the merits of the shoes themselves.

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

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

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

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

Other thoughts

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

Conclusions

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

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

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

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

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

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

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