Reflecting on the Fact that Hans Asperger was Really a Nazi and not just Working from the Inside to Protect Vulnerable People

There have been a couple major articles written about Hans Asperger, the man who categorized what would eventually be called Asperger’s Syndrome and then eventually just folded into the autism spectrum. These articles, the first of which was printed in the New York Times and the second in The Guardian both discuss Asperger’s history prior to and during WWII. A lot of English language research about Asperger has framed him as a man who protected disabled people from the harsher and more lethal aspects of the Nazi’s euthanasia programs. New research that did not rely so much on texts that had already been translated into English paint a much less flattering picture of Hans Asperger. This new research more clearly indicates that Asperger was not altruistic in his actions and personally made decisions that led to the deaths of disabled people.

I was diagnosed with Asperger’s Syndrome thirteen years ago. So how do I feel about the fact that the man who lends his name to a diagnosis I was given (Asperger’s is no longer an officially recognized diagnosis. As of the publication of the DSM V the diagnosis is just considered part of the autism spectrum)?

I’m completely unsurprised to be honest.

Part of this is probably because I never read books like Neurotribes or Asperger and his Syndrome (link leads to a paywall). Both are considered influential works on autism and both paint a kinder picture of Asperger either by glossing over his Nazi ties or suggesting he actually protected his patients from the Nazis. I have no preconceived notions to be challenged in the face of this new information.

Additionally, I’m aware enough of the history of men who are credited with discovering or categorizing other disabilities and that history suggests that if people googled their condition’s namesakes, a lot of people would be uncomfortable disclosing their diagnoses just to avoid association with the people whose names are attached.

Consider John Langdon Down, the man who categorized Down Syndrome. He initially called the condition “Mongolian Idiocy” and if that sounds really racist, it’s because it is. He called it that because he believed that people with intellectual disabilities were evidence of evolutionary throwbacks. He believed that people of colour were less evolved than white people and thus inferior. He further believed that because he could find similar physical traits between certain disabilities in white people and nondisabled people of colour that this meant that they were genetically similar racially. Basically, intellectually people were inferior because they weren’t genetically white.

He was a real winner. You can read more about his theories on race and disability in his 1866 paper Observations on the Ethnic Classification of Idiots. It’s awful so I don’t recommend it.

Ironically, Down Syndrome only became known as Down Syndrome after people finally clued into the fact that the term Mongolian Idiocy is just deeply offensive, so they changed the name to include the name of the man that invented that ableist and racist name for ableist and racist reasons.

I’d really like to sit those people down and ask them what they were thinking.

I’ve never identified as an “Aspie” as many people who received an Asperger’s diagnosis do. I have always felt that autistic far better described my experience and was just easier for other people to understand. So I don’t need to figure out what this means in relation to a label I identify with. I am also unsurprised that Asperger himself would have landed me with the not so flattering label of “autistic psychopath”.

It is interesting that these men didn’t name these conditions after themselves. Other people chose to do that after the terms those men came up with were recognized as harmful.

I am also aware that there is some concern about the revelations about Asperger in relations to people who actively identify as Aspies. There is a socially constructed hierarchy of autism which is usually defined by functioning labels. These are often distilled into high and low functioning. These kind of labels are harmful and many within the autistic community fight against them. Asperger’s Syndrome was considered a milder (read ‘higher functioning’) form of autism so some people who identify as Aspies use their specific diagnosis as a way to signal their place at the top of the hierarchy.

While this behaviour (and yes I know it wasn’t everyone so please no angry comments about how “You’re an Aspie but not like that”) was always harmful to the autistic community at large. There is now a sense that it is even more sinister considering the revelations about how involved Hans Asperger actually was with Naziism.

On that note I’d say, things aren’t worse because a Nazi did it first. The Nazis hold the place in our collective anger, fear and hatred because they did those awful things as a democratically elected (at least at first) and widely supported political movement and governing structure. They weren’t just awful people. They tried and succeeded within their own culture in making bigotry a culturally moral imperative.

So while the parallel is clearly troubling and uncomfortable. People who hold or have held feelings of superiority because of their specific Asperger’s diagnosis are still bad but no worse simply because we now know that Asperger was a Nazi. Their misdeeds are their own.

As for people who simply identify as Aspies because it was a way to claim community, the answer is less clear. While people should be able to identify however they want and Asperger’s name being attached to their diagnosis was a decision made in the 1980s by someone who wasn’t Hans Asperger. Asperger never put his name on the condition, it isn’t a way of claiming ownership or being given ownership of the people who have that label. So in that context, the term Asperger’s is relatively neutral. However, while people may individually decide that they are still comfortable with the label, they can’t force other people to be.

These revelations will inevitably stigmatize the name generally. More specifically because of how many different marginalized groups were targeted by the Nazis, there are just a lot of people who will understandably want to distance themselves from any reminder of that history of violence and genocide.

I suspect that we will see far fewer people identifying as Aspies. This has I think already started since already fewer people will be hearing that term at the point of diagnosis because it isn’t an official diagnosis anymore.

As a final thought…

Can people just stop naming medical diagnoses after the people who first categorized them? Particularly if the term is being changed specifically because that scientist gave it a horribly offensive name, to begin with.

It’s bad enough that people try and define us by our diagnoses. We really don’t need to be defined by our vague association with the people who first studied us too.

 

 

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I Like That, I Want That, Can I Have That?: When NonAutistic People Don’t Understand Autistic Communication and Punish Us For It.

When I was a child and I answered the phone I didn’t say “hello”, I said “What?”. My mother was constantly horrified at my supposed rudeness and would try and make sure that someone, anyone got to the phone before me.

The thing is though, that I wasn’t being rude or at least I didn’t think so. I was just responding to people on the phone the same way I would to someone who called to me from somewhere else in the house.

When my mother wanted me for something, she would yell my name from the foot of the stairs and I would respond with “WHAT?” I was never penalized for this and I just assumed that if someone was calling you then asking them what they wanted was kind of useful information to gather. I wasn’t trying to be rude. I was just transferring how I communicated in person to how I communicated on the phone.

If someone called to me in person, I responded with “what?” or “yeah?”. No one bothered to explain to me the difference of in person communication and communicating on the phone. So I kept getting in trouble for how I answered the phone and I never understood why.

I was always being told I was being rude when I couldn’t figure out why. It was only years later that I realized that because of the ways neurotypicals have coded language, they always interpreted the words I said as meaning something else.

This is most clearly noticeable in how I used the phrases “I like that”, “I want that” and “Can I have that?”. To me, those things express three different things but apparently to everyone else they only mean two.

Every time I said “I want that” people acted like I was asking for whatever I was referring to. I wasn’t. There was no request in the statement. I hadn’t asked for it. I was conveying the level of how much I liked it. It was an expression of envy, not demand.

While it’s true that I probably wouldn’t have complained if I was handed the object of desire, I understood that asking for things was rude. I was also aware that if I simply said that I liked something, that people would not know to what extent that I liked it. Was it something that just gave me fleeting pleasure or was it something that I would think about and remember and miss.

After, what was probably well over the hundredth time that I had been lectured about not constantly asking for things when I had simply expressed that “I wanted something”. I explained the difference in how I used language. I explained that I wasn’t asking for whatever trinket had fascinated me but differentiating between the things that I simply liked and the things I actively wanted to own. I understood that I wasn’t going to be given the thing.

This, however, didn’t build a bridge of better communication. It created a flustered lecturer who couldn’t figure out how I had come to think that words could be used so literally. I just had to be forced into more standard patterns of communication.

These distinctions may seem obvious or less rude now in a world where it is not uncommon for people to publicly declare a desire for things that they probably won’t ever own. A single all caps “WANT” in a tweet quoting another tweet featuring a luxury item is pretty common on Twitter. Or that same “WANT” posted as a comment on Facebook or Instagram is also a not infrequent occurrence.

At least I was using full sentences and expressing my desire with significantly calmer.

Nondisabled people far too often defend poorly conceived acts of “solidarity” that miss the mark by drawing attention to their intentions. They want to avoid consequences for the impact of their actions because they “didn’t mean it”.

Autistic people do not get the privilege of cloaking themselves in the armour of intentions even if their faux pas is just a failure of empathy and accommodation on the part of the person castigating them.

Autistic people have long been characterized as unempathetic little shits who lack theory of mind (the ability to place themselves in the shoes of others). Much new research rejects this and theorizes a different issue.

The Double Empathy Problem which posits that misunderstandings in communication are a two-way street, as much hampered by nonautistic people’s inability to empathize with autistic people.

Even though I could explain what I meant, I was miscommunicating and was rude. There was only ever need for me to change. Not the person who consistently and often willfully misunderstood me. They knew what I meant. I’d explained it clearly but I had to shift into an imprecise way of speech that was completely unnatural to me. It’s not something that I mastered until after I was diagnosed and could understand why I behaved differently than society expected me too.

The fact that I had a biologically ingrained reason for being the way I was, rather than a society which just uncritically follows and enforces cultural mores was irrelevant. The onus has always been on me to change to suit the comforts of neurotypicals. They never have to hold space for discomfort. They never have to hold awareness of me and my fellow autistics. They get to categorically define our behaviour as rude and wrong so that they do not need to empathize with us. We however, must constantly hold all that space and all that knowledge of their confusing expectations. They demand empathy without reciprocation. It is a wholely unequal power dynamic.

It is a battle we will inevitably lose because we are fighting against our very natures, simply to be allowed to exist in common space with neurotypical people and it’s a losing battle to fight your biology. We will always fall short of expectations and our “rudeness” is used to justify our exclusion.

 

 

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Euphemisms for Disability are Infantalizing

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

 

I have written about the importance of language as it relates to disability before. To oppose the idea that clear language should be avoided in favour of what can best be described as pretending difference doesn’t exist to opposing the replacement of clear language with euphemisms.

Euphemisms are rampant in disability discourse. There is this misguided idea that disability must be softened and made palatable.

This comes from general assumptions that the word disabled is negative and shouldn’t be used to describe people and from watching words that relate to disability be adopted by society as insults.

The best example of this can be seen in the evolution of language around intellectual disability. In the early, to mid-20th-century people began to realize that language utilized to describe intellectual disability had been adopted by the dominant population as insults. Words such as idiot and moron which had been medical terms are now commonly used with the intent to offend. In order to combat this, a new term was adopted in order to have an accurate medical term which was not tainted by having become an insult. That word was “retard”. This word two has long since become an insult and there is a movement to have it struck from the lexicon.

As new words became insults, the search for new language continued but instead of changing direct medical terminology people began substituting euphemisms. Terms like “special needs”, “differently abled”, “physically/mentally challenged” and “diffabled” etc. began being used in an attempt to distance disabled people from the way language continued to be used to stigmatize disability.

The thing is though, this doesn’t work. While language has become a way to stigmatize disability by weaponizing it against both the people it was initially meant to simply describe and the general population along with inanimate objects. Basically, anything that causes people displeasure might now be described with a word originally intended to describe disability.

This really isn’t particularly surprising, the problem has never been language until it was used as a weapon. The problem was that disabled people are stigmatized and as a result, things associated with them including language become associated with that stigma.
And yet, many people continue to look for the right kind of faux positive wording that will magically erase centuries of systemic prejudice without actually engaging and challenging the core of that prejudice.

Members of the disability community have fought against the lack of clarity and reductionist nature of euphemisms by reclaiming a disabled identity and intentionally using the word disabled. Disability rights activist Lawrence Carter-Long created the #saytheword campaign to advocate for using the word disabled.

Despite this, many people outside the disability community and even some within it continue to hope that they can find that magical term which will somehow unlink language associated with disability from the stigma associated with disabled people.

I have repeatedly, made all of the arguments about how euphemisms for disability simply do not work how they undermine clarity and reinforce negative associations with disability by going to such ridiculous lengths to so much as mention disability. What I’ve been thinking about most lately in regards to euphemisms, however, is simply how infantalizing they are.

Euphemisms used for disability are either overly cutesy like “special needs” or linguistically awkward such as “differently abled”. Often they are a combination of the two like “diffabled”. A friend just posted on Twitter that they had also just heard a new term “specially abled” which again combines linguistic awkwardness with overly cutesy language. I am uncomfortable with all of it.

I am a 30-year-old woman and I cannot think of a single professional setting in which I need to discuss issues pertaining to my disability such as accommodation where I would go into that situation and say,

“Hi, I have special needs and I need to discuss workplace accommodations”

Or

“Hi, I’m diffabled, who do I talk to about getting speech to text software on my computer”

These terms have no place in a professional or academic environment. They sound childish and are ultimately confusing. The term “diffabled” is so awkward that it may simply be interpreted that the speaker has simply stumbled over the word disabled. Even if it is heard and received as intended completely lacks clarity and people might be confused.

There is also the very important reality that terms like disabled have legal meanings that come with legal protections such as rights to accommodation and dancing around with euphemisms could very likely create barriers to accessing those accommodations.
Cutesy language is for children but terms like “special needs” and “differently abled” are not words that we are meant to grow out of and find the appropriate terms and adulthood. These are words some people advocate should replace clearer words.
I can only surmise that whoever came up with these words genuinely does not expect anyone that these words describe to actually grow up. To actually have to interact in the adult world and present words that seem fit only to coo in a high-pitched voice at an infant about something other than disability.

So, in addition to rejecting the word disabled, euphemisms for disability are also creating cultural understandings of disability and those understandings do not support prolonged inclusion. They are fundamentally inconsistent with being taken seriously as an adult.

Their positivity is only true in the context of presenting disabled people as children.
In the end, euphemisms reinforce the very thing that they were created to challenge.

They reinforce negative understandings of disability and maintain false impression that disabled people are eternal children.

 

This is an inappropriate burden to place on any disabled person. Shifting from insults to being framed in childish terms is not an improvement.

It certainly hasn’t done anything to challenge the ingrained systemic prejudice disabled people face. If anything it has added to it.

#saytheword

 

How to support my work
If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

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If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

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

Labels

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Teach kids how to talk about disability

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

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

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

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

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

 

 

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Could You Please Stop Insisting that People Have to Use Person First Language

There are so many of those lists explaining how to speak to disabled people respectfully. They are generally well intentioned and some of them are even really good. There is however an almost universal element that I wish would be retired. They inevitably include a statement that disabled people should ALWAYS be referred to using Person First Language (see an example here).

I have issues with the command to always use Person First Language for two reasons.

1. Person First Language is culturally geographic. It is only consider PC in North America. Interestingly if you were to read the same article in English speaking Europe they would insist that you say “disabled person”.
2. Despite it being widely considered PC in North America, a growing number of disabled people (myself included, see here and here) are intentionally abandoning it.

This isn’t about completely switching the script. I’m not suggesting that we ban Person First Language or that people shouldn’t use it (so don’t attack me in the comments). I’m saying that realistically person first language is not always appropriate (from a purely cultural sensitivity angle) and demanding that it be used anyway is a tad clueless.

The insistence  that people MUST use People First Language is also just disrespectful, not only to how many people are coming to self-identify but also completely ignoring that the reasons that we do so might actually be valid. Ignoring the voices and preferences of actual disabled people just reinforces the idea that we are incapable of determining what is best for us.

Whenever I come across the Person First edict on a “How to Be Respectful about”. Disability” list. I always wish it had been replaced with something along the lines of,

How to Deal with Disability Labels

Language around disability is complicated and there is currently no universally accepted term. Even the terms that are considered most acceptable like people with disabilities (in North America) and disabled people (in the UK) are not universally accepted by people in those locations. In order to be respectful it is usually inoffensive to default to the most acceptable term based on your location. However, if a person expresses an alternate preference, it is extremely rude and disrespectful to insist that they conform to the dominant preference. Best practice would be to utilize the term that the individual prefers.

I repeat. It is extremely rude and disrespectful to impose labels on people who have clearly expressed an alternate preference.

I wish this concept wasn’t so hard to understand.

 

 

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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What Learning Other Languages has Taught Me About How I Learned to Talk About Disability

I am an anglophone, so I first learned to speak English and it is the language I use almost exclusively day to day. I however spent my first six years of elementary school in French immersion which despite having been nearly twenty years ago at this point has left me functionally fluent in French. By which I mean I can get by in entirely French environments. My vocabulary is extensive enough, though my grammar skills are lacking but good enough to make myself understood 90% of the time on the first try. I can also read the language. though don’t ask me to write anything down as my written literacy in French is terrible.

I also have some very basic skills in German after having taken it for a couple semesters in high school and taken it up again for four or five semesters in university.

In reflecting on my non English language training I came to a realization. I was never really taught how to narrate my experience as a disabled person in any language.

In school none of the activities we talked about as we learned to read or write (in English or French) ever related to disability. They were always geared entirely toward able-bodiedness. The proverbial Dick and Jane or Spot the Dog (and their French equivalents) all ran and played and tossed and caught balls. In these lessons the other children were learning not only the rudiments of grammar and literacy but how to describe their own lives.

I was never taught to articulate how or why I couldn’t do the things my peers did, like why I couldn’t cross the monkey bars. I knew even as a Kindergartener that I had Cerebral Palsy but no one ever taught me how to talk about how it affected my life. So I knew I couldn’t cross the monkey bars but I couldn’t articulate why. Words like disabled and disability were not in my vocabulary, much less an understanding of how cerebral palsy affected my body.

Most children start grade school with the vocabulary to list off the parts of the body (Head and shoulders,knees and toes etc.). Learning the French equivalents was much the same. When we did biology lessons on the body, everything was framed through a lens of able-bodiedness. When we studied the brain, we only ever learned about it through a neuro-typical lens. No wonder, no one ever considered that I might be Autistic as a child, no one around me even had the words to describe difference. A medical definition of normalcy was completely ingrained in the places I found myself.

We didn’t learn words like disabled, wheelchair or crutches. Disability was erased from existence by simply never being mentioned.

I had those words in English eventually but I didn’t learn them in school. They were not words that appeared on spelling vocabulary lists. I never had to look up their definitions in a dictionary.

I learned about the words that describe my life in an entirely medical environment in a completely hodge-podge manner, through overhearing snippets doctors told my parents. These exchanges were never directed at me. I just happened to be in the room when they took place. Terms like brain damage, hemiplegia (a word spellcheck doesn’t even think exists, apparently I’m supposed to have meant paraplegia). Terms like walker and crutches were learned from observing the other people who came to the local rehabilitation hospital. The only one I think I got out and about in society was wheelchair and even then it’s use was framed more in terms of something elderly people needed, rather than connected to disability.

I was never taught the French equivalents of these words. I think the only one I learned organically was the term for wheelchair. I think it was in a book we read for school. Other than that my limited disability related French vocabulary comes from me actively looking them up as an adult. Even so I think I can only explain cerebral palsy in French at a very simplified first grade level. I’ve never had to seek medical treatment in the French speaking places that I have lived so I just never got taught the words in the only place they seem to be imparted to people.

That is not to say that I never encountered disability related language in grade school. It all just happened to be of the slur variety. I was definitely called a retard on many occasions. Oddly, my French immersion peers would always follow up this insult with the bizarre claim that it meant “really smart” in French as if they could convince me I hadn’t just been insulted. It is bizarre because the word retard comes from the completely innocuous French word for late or slow. As a result I was pretty familiar with it.

The point of French immersion is to have the student completely fluent by the time they finish grade 12. Even though I didn’t get that far and transferred to an English school in grade 5, I doubt that I just left before the disability vocabulary list was assigned as spelling tests are abandoned for more in depth grammar and writing training around that time anyway. I also never learned about disability and language in any of the English classes I took after that and I doubt French schools were teaching more than their English counterparts.

Oddly in terms of studying German, the instructor made a conscious choice to not teach us disability vocabulary.

Sure my semesters in high school were the same simplistic head and shoulders, knees and toes vocabulary, you get in Kindergarten but by the time I started taking university level courses, we started having more complex terms and learning to understand them in practical context.

I remember in one of my later intermediate courses, there was a word list in the textbook that specifically dealt with disability. It had words like disability, wheelchair and crutches. The professor for the course told us to skip it. I remember being disappointed but not being brave enough to ask her why. I did go through the section on my own time and the only issue I found was that the reading comprehension section, where they put the vocabulary in context did veer into inspiration porn territory. It was a story about a 19th century woman who used a wheelchair and ran a successful toy factory. The last line of the piece was something along the lines of “It just goes to show that a person in a wheelchair can be a success!” *sigh*.

While, yes I could learn these words and how to use them on my own time, I sincerely doubt that any of my nondisabled peers felt compelled to do so. So even when non-medical centred opportunities present themselves, they really only hold appeal to people personally affected. Learning about disability still isn’t seen as necessary, it is extra.

It is in reflecting, particularly on that experience in German class which really drove home how building my disability vocabulary was entirely medicalized when it really didn’t have to be.

I do wonder if things are different now at least for children (that German textbook incident wasn’t really that long ago). I didn’t have access to the internet as a kid. Discussions and debates around terminology like person first vs. identity first didn’t exist back then. There was no call to #SayTheWord.

I am worried that these important language discussions don’t really trickle down to children, whose worlds are still very much framed by the adults around them. Adults who are themselves often non-disabled. Just consider how strong the unflinching support for person-first language can be among certain parent bloggers.

So I wonder are we still denying children the language to speak about and understand their own lives? And if so how can we work to change it?