Autism Awareness Month in the Time of Covid-19: Support Actually Autistic People…Seriously

Image Description: Photo of a blackboard that says "Support #ActuallyAutistic People" with a multicoloured infinity symbol at the bottom
Image Description: Photo of a blackboard that says “Support #ActuallyAutistic People” with a multicoloured infinity symbol at the bottom

Once again April is nearly upon us and along with it the baggage of Autism Awareness Month. Autistic people often dread April with it’s frequently dehumanizing rhetoric about us and a focus on Autism Charities that are often very unpopular with the people they claim to support. April often seems less about raising awareness for autistic people (whatever that actually means) and more a very pervasive fundraising campaign for Autism Organizations whose goals and actions are often in opposition to those of autistic people.

Autistic people exist, you are now aware, can we move on to acceptance and meaningful inclusion and support now?

Traditionally, April is full of people “Lighting It Up Blue” a campaign created by Autism org Autism Speaks. Puzzle piece imagery also abounds which is also largely associated with Autism Speaks but which has become so synonymous with autism that many organizations use it. It is a common feature in April Autism fundraising campaigns. I have seen puzzle piece pedicures which raised money for an organization that had no autistic representation in its governance.

Each year many autistic people protest the corporatization of autism initiatives. We protest the use of the puzzle piece to represent us as we believe it implies that we are broken and require putting back together. The negative associations of puzzle piece iconography has been backed up by research.

Autistic people tend to prefer the symbol of a rainbow infinity symbol which celebrates neurodiversity.

Image Description: Infinity symbol in a rainbow gradient
Image Description: Infinity symbol in a rainbow gradient

One of the most common issues of contention is the continued popularity and public support for Autism Speaks which is so unpopular in the autistic community that many consider it a hate group. We have been explaining why for years. There are many accounts by autistic people explaining their continued dislike of the world’s largest autism charity. There are even videos.

Yet, every year when an autistic person expresses dread of April and the inevitable inundation of Autism Speaks fundraising, we still get asked why?

This year is different though. This year we are heading into April in the middle of a global pandemic. This year might offer autistic people a brief reprieve from what many of us have renamed “Autism Bewareness Month”. It will be harder for organizations like Autism Speaks to roll out their huge campaigns in a world that is social distancing (something that autistic people are really good at by the way).

That does not mean that the world should look away from autistic people this April. This year is instead an opportunity to refocus on supporting autistic people more directly.

I know that I am not alone as an autistic person in experiencing a heightened state of financial anxiety as a result of social distancing. I also have a physical disability that adds nutritional anxiety as I cannot grocery shop on my own both because of physical barriers and that I am a higher risk for serious coronavirus infection.

Many of us might already be champions at social distancing but we are particularly at risk of extreme poverty and not being able to find the supports we need to get through this pandemic safely.

So this year I would ask that if you are able that you directly support autistic individuals and organizations that are run by and for autistic people.

You can support me by sending me money directly through paypal (I will include more ways to support me and my work at the end of this post).

You can also support autistic creator like Amythest Schaber (whose video can be viewed earlier in this post). Amythest is also an artist with a shop on Redbubble where they sell beautiful autism and disability inspired art.

Image description and art print of the word Neurovidersity in a rainbow gradient with sparks like neurological connections on a black background. It can be purchased here

There are also autistic authors who write beautiful autistic characters. I recommend On The Edge of Gone by Corinne Duyvis.

My friend and amazing writer Sarah Kurchak has a memoir coming out on April 2, and the book launch has been cancelled due to coronavirus but you can and should preorder her book I Overcame My Autism and all I Got was this Lousy Anxiety Disorder. Autistic comedian extraordinaire Hannah Gadsby is a fan.

Image description: Book cover for I 
overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads "A treat to read, I'd recommend this book to anyone who struggles to connect to the world, even if you don't call that struggle Autism"  A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.
Image description: Book cover for I
overcame my Autism and all I got was this Lousy Anxiety Disorder. The title is shown at the top under an endorsement from Hannah Gadsby which reads “A treat to read, I’d recommend this book to anyone who struggles to connect to the world, even if you don’t call that struggle Autism” A head and shoulders shot of the author a white woman with pink hair with her head resting on her arm takes up the bottom of the cover.

You should also go watch Gadsby’s phenomenal comedy special Nanette on Netflix.

These are just a few of the amazing autistic people you could be supporting and learning from this April. We are sheltering in place after all, what else are you going to do?

Aside from directly financially supporting autistic individuals, you can also support better autism organizations whose leadership is full of autistic voices and whose goals more clearly support the wellbeing of autistic people. Organizations like The Autistic Self-Advocacy Network, The Autistic Women & Nonbinary Network, and Autistics 4 Autistics.

In the midst of the stress and fear that this pandemic has caused please don’t forget autistic people this April. Use the opportunity of the time afforded by social distancing to learn more about autistic people from autistic people rather than making a shallow visual show of support that benefits a charity more than the people who require the support.

Let’s get past autism awareness and move on to autism acceptance and inclusion.

How to Support Me and My Work

The outbreak of COVID-19 has created a lot of financial precarity for me, so I would really appreciate any assistance you are able to offer

Please if you are able help the most vulnerable in your communities by practicing social distancing responsibly and by not hoarding resources.

I personally am experiencing financial difficulties as a result of Covid-19 and would appreciate any assistance you can offer, even if it’s just to share this blog post.

If you are able please consider helping me financially during this time. My situation is quite precarious.

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

Crip Camp: It is Necessary and Important

Image Description: Poster for the Netflix Documentary Crip Camp. The Title is in white in the upper left corner. In the background are  white buildings in the foreground a shirtless black man leans a guitar over his right shoulder while pushing a white young man wearing trousers and a white shirt in his wheelchair
Image Description: Poster for the Netflix Documentary Crip Camp. The Title is in white in the upper left corner. In the background are white buildings in the foreground a shirtless black man leans a guitar over his right shoulder while pushing a white young man wearing trousers and a white shirt in his wheelchair

Near the beginning of the film Crip Camp which premiered today on Netflix, a girl named Valerie sees that she is being filmed and asks “Is this necessary? Is this important?” The answer is of course, yes this was very important.

I am so grateful for this film. It is absolutely unrepentant for disabled people.

The film covers the birth of the American disability rights movement which is traced back to Camp Jened, a camp for disabled people run as the film puts it by “hippies” from the 1950s to the 1970s. The film then shows how ideas and relationships created at Camp Jened resulted in civil disobedience like the 504 sit in which paved the way for more accessibility and laid the groundwork for the ADA.


Fighting for the AdA of course took significant activism and throughout all the time that disabled people in the United States were fighting for legal improvements to better their quality of life, you will find people who met at Camp Jened and who stayed connected and who organized for change.

Throughout the film many of the voices we hear discuss how they grew into their disabled identities and learned to reject the discriminatory attitudes that they faced and also reject the internalized ableism that they had learned growing up being the only disabled people in their communities.

Image description: a poster with a black background. It has the words challenged, handicapped, handi-capable, differently abled, divers-abled, special needs in white followed by red X’s beneath in a larger font is the word Disabled followed by a red check mark.
This poster is designed by Amythest Schaber and can be ordered here

It is through finding community that these people who improved the lives of so many others were able to do so.

This is very much a film about disability and disabled people. If the title Crip Camp wasn’t enough of a hint.

It was so powerful to watch. I finished it feeling sad that I never had the opportunity to go to Camp Jened and be part of the amazing burgeoning of the disability rights movement. Unfortunately, not everyone got the point of Crip Camp.

It is always a precarious situation when nondisabled people begin sharing their understandings of disability stories. In a film where several people clearly rejected the idea of overcoming disability as toxic and damaging, reviewer, Peter Debruge concluded this as the takeaway from the film.

In the end, “Crip Camp” isn’t about disability so much as the incredible ability this community showed, overcoming physical barriers and personal discomfort in order to be taken seriously. But that doesn’t mean the movie has to be 100% serious, and LeBrecht and company recognize that a little irreverence makes the journey that much more universal.

I cannot stress enough thhat while there is a lot of joy and triumph in the film, they did not however overcome physical barriers. They demanded that those physical barriers be removed. It’s like Debruge doesn’t even know what the 504 sit in accomplished. Did he even watch the movie?

I must be acknowledged that Debruge has a history of writing badly about disability. In his review of the controversial Don’t Worry, He Won’t Get Far on Foot, he initially included this passage,

Text Reads: In the interest of full disclosure, allow me to confess: I’m a sucker for quadriplegic movies. Didn’t put it together until “Don’t Worry” really started to jive (which happens right about the moment Van Sant reveals the cause of Callahan’s injury), but there’s something about seeing real people contend with such extreme disability that gets me nearly every time. Whether they’ve been crippled since birth (a la “The Sessions”) or later in life (“The Sea Inside,” “The Theory of Everything”), their stories have a way of reminding us what really matters. Add to that the circle of support severely handicapped individuals require, and I’m in rapture, for there is nothing more beautiful in all of cinema — nothing — than genuine caregiving.

This section was swiftly criticized and summarily removed without acknowledgement that changes had been made. The review didn’t exactly improve much with the omission. It arill includes passages like this,

their stories have a way of reminding able-bodied people what they take for granted, while serving to bridge the perception of difference and discomfort that no doubt contributes to an under-representation of handicapped characters in general. In Callahan’s case, his alcoholism indirectly caused his injury, and the circle of sincere human support that gathers around him — both for overcoming his addiction and adapting to his condition — is so beautiful as to justify the controversy of its casting.

So it is certain that at the very least Peter Debruge as learned nothing. It is important to watch how important films like Crip Camp are received my nondisabled audiences. The oppressor has an infinite capacity to simply ignore the story as it is intended to be told.

John Callahan (the man profiled in Don’t Worry) never set out to inspire nondisabled people. He was more the kind of guy to tell them to Fuck, Off.

Crip Camp is a documentary about the amazing and grueling work disabled people have had to put in to be seen as human beings just as they are. Not the pseudo-humanity that is inferred by narratives of overcoming.

Crip Camp is an absolute much watch. I would also ask you to seek out opinions and reviews written by disabled people. These will help you broaden your understanding of the film and the barriers we continue to face.

Oh, did I mention, one summer at Camp Jened, there was an outbreak of crabs so the disability rights movement was born out of a bunch of horny teenagers. Which is clearly amazing.

Go watch the movie people.

How to Support Me and My Work

The outbreak of COVID-19 has created a lot of financial precarity for me, so I would really appreciate any assistance you are able to offer

Please if you are able help the most vulnerable in your communities by practicing social distancing responsibly and by not hoarding resources.

I personally am experiencing financial difficulties as a result of Covid-19 and would appreciate any assistance you can offer, even if it’s just to share this blog post.

If you are able please consider helping me financially during this time. My situation is quite precarious.

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

Disabled Children Deserve Privacy

I have always been deeply grateful that I grew up before social media was a thing. I am glad that there are no videos of me for “educational” purposes. I am particularly happy that there are no videos of my trauma going around and had I been born two decades after I actually was there probably would be.

There is again a video of a disabled child making the rounds of the internet and the impact has been utterly horrific. I am not going to name this child or link to any of the coverage because the fact that all of this exists right now is already horrific enough. That this stuff will still be on the internet, very much attached to his name is unconscionable.

It is bad enough that his mother made the well intentioned but disastrous decision to both film and then publish a video of her nine year old child expressing suicidal ideation as a result of the bullying he experienced as a result of his disability and racism. She was hoping to raise awareness of the impact of ableist racist bullying. That video has now been viewed millions of times and been shared by countless people.

None of the reactions have shown that people understood what happened or the work to undo deeply ingrained cultural prejudice that needs to happen in order to actually change the reality of growing up disabled. The first response was simply pity. Pity that was mixed with shock and horror but pity nonetheless.

What followed were misguided attempts to cheer up this child. There was a fundraiser to send him to Disneyland. I’m not saying he wouldn’t enjoy the outing, he very well may. I however, do know as someone who was virulently bullied that a fun holiday would not erase the harm of the abuse I experienced. It would also not stop it from happening. Disabled people don’t need trips to Disneyland. We need systemic change that stops abuse from happening to us and resources to help deal with the abuse that has already occurred.

Unfortunately because pity is rarely a productive response to bigotry for many it soon turned into suspicion. This appears to be because people learned that the child’s family is not poor. Suddenly, this money raised for a holiday without their input is seen as something they do not deserve. Many people began complaining that it had been raised in the first place.

From there some people began to believe that this boy, who had been bullied to the point of wanting to die was not actually a child at all. The decided that he was an adult putting on an act.

I can confirm he is in fact a nine year old child.

People used prejudice about the way disabled people, particularly racialized disabled people look to ultimately label the entire situation a sham.

All of this is speeding around the internet internationally with persistent virality and all of it is tied to a traumatized child by name. In addition to the trauma that led to his thoughts of self-harm. He now has to deal with the fact that many people believe that he is lying.

The publication of his expression of serious trauma did not as was intended “raise awareness”. Rather it is currently compounding the harm he has already experienced. It is impossible to predict how long this will be used as a tool to dehumanize this child in the short term. Much less the impact it might have as he grows up and begins applying for university or entering the work force.

In the age of the modern internet, it will be far to easy to not only tie him permanently not only to this video showing extreme trauma which would be bad enough but also to the fallout that ensued.

The world was shown a deeply traumatized child and reacted first with pity and then with vindictive suspicion.

The way people responded is not really that surprising even as it fills me with rage. People have been sharing these kinds of videos for years and while they frequently go viral. There is no real corresponding social change. Not even in the area of “awareness”. No child deserves to have the world be this aware of them.

Yet, all I can now do is sit here and hope that as a result of the hateful fallout of this latest video shared in the name of “awareness” that the parents of disabled children will be more reticent in what they share about their children with the public.

Please, please never gamble your child’s well being for “awareness”. Please put the responsibility of creating change and learning on those who are ignorant of disability not disabled people trying to survive that ignorance.

Disabled children deserve privacy. That lesson should not need to come at the cost that this child is paying.

How to Support My Work

So now for the very in-depth appeal for support for my PhD. Please read through this, there are so many ways to help, including just sharing this blog post on social media.

If you want to help me buy books and other resources for my PhD, you can buy me an amazon gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

Become a Patron!

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites) use the answer “scholar” for etransfers

The Peanut Butter Falcon and Doing Disability Differently in Film

Image Description. Poster for the Peanut Butter Falcon. The three stars Tyler (Shia LaBoeuf), Zak (Zack Gottsagen), and Eleanor (Dakota Johnson) are on a wooden raft while Zak poses with a gun on a river with the movie's title at the bottom.
Image Description. Poster for the Peanut Butter Falcon. The three stars Tyler (Shia LaBeouf), Zak (Zack Gottsagen), and Eleanor (Dakota Johnson) are on a wooden raft while Zak poses with a gun on a river with the movie’s title at the bottom.

The Peanut Butter Falcon is a beautiful artistically shot film that manages to humanize Zak, its main character who has down syndrome in a way most films with disabled characters.

Far to often disabled characters are plot devises who serve as objects of inspiration or pity and fail to show the audience a realistic and humanized portrayal of the disability experience. Peanut Butter Falcon on the other hand manages to portray Zak as a well rounded character with agency within a plot that at times depends on a degree of unreality. This is definitely a film that stands apart in its ability to portray depth and truth through a story that is at times dreamlike.

The story follows Zak who has been living in a retirement home as the only nonelderly resident. He resents not only his inappropriate living environment but also the fact that he is denied the chance to pursue his dream of becoming a professional wrestler. He escapes the retirement home and teams up with Tyler, a small time criminal on the run, to get to a wrestling training academy.

The retirement home sends idealistic care aide Eleanor to retrieve Zak and the three embark on an adventure.

The film has a set up that could so easily have fallen into old and harmful tropes. Yet it subverts all those stereotypes while maintaining a light and positive tone.

The film starts out strong by not sacrificing the humanity of the senior citizens who also inhabit the retirement home with Zak. They are his frequent co-conspirators in his escape attempts. They understand that he doesn’t belong there as much as he does.

The movie also deals beautifully with the reality that a person can discriminate and do harm to disabled people without intending to and that good intentions can still reinforce and be dehumanizing. Eleanor starts out aware of the unfairness of Zak’s life in the retirement home and sees herself in opposition to the system that forces him to be there but she doesn’t start to see how her own treatment of Zak is condescending and dehumanizing until after he escapes and refuses to return with her.

The movie has no simple answers for complex issues. There are moments of triumph and disappointment. This is a story that very much leaves you with the knowledge that the characters still have to live their lives after the final credits roll. Everything isn’t wrapped up in a nice bow.

One of my favourite aspects of the film is what many describe as a “modern Mark Twain adventure” (Even the characters in the film). The story manages to evoke the tone of a tall tale well told while still keeping the realness of the characters intact.

When I criticize bad portrayals of disability, I am often accused of wanting some kind of unobtainable perfection in representation. I, however, just want good stories told well. The Peanut Butter Falcon achieves this in spades. Star Zach Gottsagen gives a stellar performance and has amazing chemistry with his costars. The film manages to avoid all to common disability tropes easily without it feeling like you are being beaten over the head with a moral lesson.

All you have to do is want to tell a better and bigger story.

I hope that more stories about disabled characters will be given this kind of depth and respect in the future.

I highly recommend the film.

Here is the trailer.

How to Support My Work

So now for the very in-depth appeal for support for my PhD. Please read through this, there are so many ways to help, including just sharing this blog post on social media.

If you want to help me buy books and other resources for my PhD, you can buy me an amazon gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

Become a Patron!

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites) use the answer “scholar” for etransfers

Rereading my Childhood for my Dissertation: Mine for Keeps

Image description: Book cover for Mine For Keeps by Jean Little. A girl sits among foliage wearing a white hat and a pink coat. She is cradling a little white dog and and underarm crutch can be partially seen next to her. (Source)

This post contains spoilers.

As part of my requirements for my PhD I’m doing a book audit of books from my childhood that were meaningful in some way. Some of those books were books assigned in classes in schools (yes, I will be rereading To Kill a Mockingbird for the first time since high school, I will also be reading Go Set A Watchmen). It is hard even in hindsight to determine exactly what some of these books meant to me but they are the ones whose titles I could never forget or that I reread over and over or found again at key moments in my life.

The book audit assignment is not going to allow me the space to really consider these books in detail. I will not be writing essays but rather explaining why the book is significant in the context of my dissertation (for more info click here). I have thus far only read one book, so I don’t know if I will dissect each of them here on the blog. I don’t yet know what emotions are going to come up or if I feel comfortable speaking at length about a particular book without further research.

Without further ado, the first installment in a potential series

Mine For Keeps (1962) by Jean Little

Summary

Sarah Jane (Sally) Copeland has cerebral palsy and has spent most of her school years in an institution for “handicapped” (it was the sixties y’all) children. A new rehabilitation centre is opening up close to her family and Sally is moving home permanently for the first time since she was a small child. She will be attending the same school as her siblings. Sally is scared but excited.

This was my third read through of this book. Both previous reads were done before I turned 18. All I can say at 32 upon rereading it is to say. Wow, I was really starved for representation if I treasured the memory of this book.

It is important to point out that Jean Little is both Canadian (yay CanLit) and is partially blind (vintage CripLit). She has written several children’s books on the topic of disability.

Mine for Keeps, offers an odd combination of realistic portrayal of disability and those smarmy morality tales that were popular in children’s fiction at the time. At times you have the impression that you have left suburban 60s Canada and fallen into a Dick and Jane school reader.

It is almost as though the author didn’t know how to balance realism with the morality that is inevitably expected in children’s books with disabled characters. Sally doesn’t just have to deal with going to a mainstream school that has ill considered her needs and balancing family life as a long-term resident and not just the summer and Christmas guest. Sally has to save the self esteem of an unpopular Dutch immigrant boy named Piet to make his sister happy.

Rereading this book as an adult, I cringe more that I identify with the book. Sometimes I cringe because I do identify with the book but not the book’s message.

To her credit Jean little does try to subvert the supercrip narrative that the book sets up. Piet is depressed because not long after arriving in Canada he contracted rheumatic fever and was sick for months. Though now out of bed Piet’s activities are still restricted by his health. His English isn’t as good as his sister Elsje’s and he is unpopular with the boys his age because his inability to participate makes him appear standoffish.

Before he was ill Piet trained animals and even has a very well trained dachshund named Willem. Despite being somewhat recovered Piet refuses to take back responsibility for Willem from his sister believing himself to crippled (though he said it in Dutch).

Elsje decides that if Sally can train her own puppy Susie, it will prove to Piet that he is still capable. Ultimately, Sally just ends up putting Piet on the spot in public forcing him to either display his dog training skill or be embarrassed.

The book is really longer than it needs to be and this seems to be to try to give Sally some semblance of agency in the story but in the end she is really just a pawn in her friend’s ill conceived bid to save her brother from being a moody teenage boy.

The book tries to justify this by giving Sally an odd anonymous obsession with Piet (they don’t even meet until well past halfway through the book) because her brother makes an offhand comment about no one liking Piet but that his sister was in Sally’s class.

Piet is otherwise an absent figure. He appears in two scenes in the entire book. Everything else is Sally being told private family business the teller should definitely be keeping to themselves or eavesdropping on other children complaining about Piet. From this alone Sally creates an ever-changing fantasy Piet that she is platonically obsessed with, for no conceivable reason.

While it is not written with that intent it very much reads like Sally is pursuing training Susie at least to the degree and zeal that she does in the book in order to keep a friend (who can be moody) happy.

There are no real stakes. Sally is able to convince Piet to go back to looking after Willem by pressuring him in front of an audience. The actual time spent training Susie up until this point is just a couple of weeks. Though of course as is the way with such books the children all intend to carry on training their pets. Sally with her friends and Piet with two new friends conveniently with dogs that just happen to be present for Piet’s moment of personal growth. This is a very important literary tool called “for plot convenience”.

Sally uses peer pressure rather than her disabled body to “save Piet”. It really feels like this book is missing basic things like character development and more information on Sally Copeland’s social reality. Perhaps it is just as an adult, that I see not just the gaping plot holes with ill-fitting morality messages stretched on top. The task of “saving Piet” much less meeting Piet is a MacGuffin. Oddly, in this book, a one-dimensional petulant Dutch immigrant who serves as the catalyst that inspires or forces (depending on how you interpret Elsje’s peer pressure) that inspires the disabled person not to mope around being depressed about their life.

The xenophobia over the immigrants in the story is painfully apparent, primarily because the book is trying to horn in the additional message that xenophobia is bad but none of the Dutch characters are likeable. Piet is taciturn and only gets over himself when publicly forced to. Elsje initially isolates Sally by monopolizing the attention of the one girl who seems to like her. When Elsje finally warms up to Sally, Sally quickly becomes the vehicle through which Elsje will “save” her brother. That dynamic between the two never really changes, yet is never questioned.

The characters are really just set pieces so that Sally can navigate learning “lessons” about independence and self-advocacy. Sally’s first lesson is that the person who was primarily responsible for her care at school is an asshole and so is Sally’s mother. I admit I remembered this part. I can’t remember if it struck me as odd upon my first reading but my alarm bells were ringing by the second reading.

On Sally’s first morning home from the institutional school, Sally’s mother left her alone to dress despite Sally always having needed help dressing before. She understandably panics at being expected to independently perform a task that she has always needed and always been given assistance with before.

Turns out all the clothes are made so Sally can dress independently and the school guardian recommended them! Prior to that moment Sally had been expected to dress herself in clothes without adaptations and there was always someone to assist her with the things she couldn’t do. She had no reason to expect accessible clothes. Her mother is also a jerk about Sally not noticing the clothes were accessible. Her mother tells her a story from when Sally was FOUR and scared of the beach until her dad ignored her fear and just plunked her unable to escape the situation ass in the surf. In this blatant false equivalence Sally is immediately enamored of the water but her mother reminds her that the family taunted a FOUR-YEAR-OLD with the nonsensical nickname Scarey Sarey (Yes, Scarey Sarey not Scardy Sarey). The message is supposed to be “how do you even know if you like something until you try it”. That, however, ignores the context where Sally has no reasonable expectation of accessible clothing. She’s never experienced it before and we learn that the person most responsible for her care has been withholding this kind of access in the institution. The book doesn’t really get into the complicated politics of normalization that are hinted at here. Sally is wrong and must learn a lesson, not her mother.

The book is full of these false independence messages. Apparently, in the world of Mine for Keeps nondisabled siblings are just tripping over themselves to do a disabled siblings chores (anecdotally, this seems suspect) instead of trying to adapt the chore to make it accessible.

This is the one place where a book full of otherwise toxic disability messages shines. Sally is constantly being consciously accommodated. She isn’t left out or left to figure it out on her own. People consider their impact on Sally. People apologize when they didn’t consider how their actions would impact Sally. This is restricted to areas of physical access though as much of the story seems to care less about how people treat Sally as a person (see: Elsje’s peer pressure). Socially, Sally is only friends with people who approach her. There is very much a vibe of “if they are smiling, they are safe”. Considering the direction Elsje’s character takes this is unfortunate.

The implication at the end of the book is that Sally has found community but, she only seemed to get it via that age-old literary device of “plot convenience”.

Despite trying to challenge the standard disability narrative, Jean Little reinforces it. I only noticed how she subverts the narrative with Piet on my third reading and that only because the book abruptly ends there. So, I guess Sally only existed to save Piet after all.

How to Support My Work

So now for the very in-depth appeal for support for mu PhD. Please read through this, there are so many ways to help, including just sharing this blog post on social media.

Kindle ebooks read on my iPad are the easiest way for me to read and take notes unfortunately Amazon does not allow people to buy ebooks for others through their wishlist system. I have an Amazon Wish list anyway as some of the books can only be purchased in print or from third party sellers because they are out of print. If you could buy me one of the books that can only be had in print, I would greatly appreciate it. If you want to help fund the ebooks I’ll need you can buy me a gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

Become a Patron!

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites)

I also have a generic disability wish list of things that would just improve my quality of life

Thank you for your ongoing support. and just an FYI I’m changing my name socially to Kimberley Jane Erin. You can call me Kim or Jane but I prefer Jane. I am however, not the least uncomfortable with Kim so don’t worry about messing up.

It’s time I really leaned into my identity as a scholar. I hope you’ll support me

I was “So Lucky” to Review Nicola Griffith’s New Book: A CripReads Review

so lucky cover

Image Description: The cover of Nicola Griffith’s book “So Lucky”. The title and author’s name appear in a large font made to look like scraps of burning paper. They appear on a black background

When I was asked to write a review of Nicola Griffith’s upcoming novel “So Lucky” (to be released May 15) I had no idea that the most frustrating part of the process was going to be figuring out how to summarize the book without spoilers. I have ultimately decided to give up on that entirely and just copy and paste the summary of the book provided by the publisher. I will only preface this summary with the opinion that I think this summary is both misleading and does not do the book justice.

So Lucky is the sharp, surprising new novel by Nicola Griffith—the profoundly personal and emphatically political story of a confident woman forced to confront an unnerving new reality when in the space of a single week her wife leaves her and she is diagnosed with multiple sclerosis.

Mara Tagarelli is, professionally, the head of a multimillion-dollar AIDS foundation; personally, she is a committed martial artist. But her life has turned inside out like a sock. She can’t rely on family, her body is letting her down, and friends and colleagues are turning away—they treat her like a victim. She needs to break that narrative: build her own community, learn new strengths, and fight. But what do you do when you find out that the story you’ve been told, the story you’ve told yourself, is not true? How can you fight if you can’t trust your body? Who can you rely on if those around you don’t have your best interests at heart, and the systems designed to help do more harm than good? Mara makes a decision and acts, but her actions unleash monsters aimed squarely at the heart of her new community.

I went into reading this book knowing very little about it beyond the fact that the main character was dealing with the transition of becoming disabled as an adult. The main character, Mara gets a diagnosis of Multiple Sclerosis early on in the book. I also knew that the author, Nicola Griffith has multiple sclerosis. Griffith also co-hosts the #criplit Twitter chats with Alice Wong, founder of the Disability Visibility Project.

I genuinely think that the less you know about this book before reading it, the better. I also think that you should definitely read this book. It is a good story that is engagingly written. It also offers a great and realistic depiction of disability.

Any attempt to more clearly describe the book or even sections of it would inevitably lead to spoilers.

Now I fully admit that I don’t have MS. The closest I’ve ever come to experiencing MS is when a former coworker became convinced that my cerebral palsy was really MS and spent a week trying to convince me that I didn’t understand my own body. That said, there are a lot of moments in this book that deal with situations that are not diagnosis specific.

What I love most about this book is how real those moments of the disabled experience are. I loved reading about how Mara engages with her newfound disability and how she shifts how she interacts with the rest of the world. I love that she makes decisions that I disagree with. I love that she makes decisions that I wouldn’t because she considered an angle that I hadn’t. I love that she is a whole character with a real life.

Mara also offers a level of intersectionality that we rarely get to see in media representation of disability. She is a woman, she is queer, we get to see her navigate relationships, she isn’t desexualized, and she surrounds herself with a diverse group of friends and colleagues.

My only real criticism of the book is that the ending feels rushed. It’s a complete ending and all the loose ends are tied up but it just feels rushed. Basically, I finished it and wanted more.

The book is good and you should read it but I would be remiss if I didn’t acknowledge why this book is important to me. There have been so few opportunities in my life where I have been able to see myself in media. While, Mara and I are very different people with different disabilities, we still share common experiences. The way that Nicola Griffith navigates the nuances of disability feel more real than anything I’ve read by a nondisabled person. It is real and raw. Griffith doesn’t pull any punches just to seem more approachable for a nondisabled reader and even among what little fiction writing about disability by disabled writers there is, this is still a rarity.

I really hope that this will be the start of a trend and that there will be more books with unapologetically disabled characters that are written by people who really understand what that means.

So Lucky will be released on May 15, 2018 for more information on where and how you can purchase a copy click here.

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

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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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#HotPersonInAWheelchair and the Longevity of Bigotry

Four Years ago former Jeopardy Champion Ken Jennings tweeted an offensive joke

So, why am I writing about a four-year-old tweet? Isn’t it old news and basically irrelevant now?

Unfortunately, no. This tweet caused controversy at the time and because it is still online, people are still using it to harass disabled people. I had four people use it against me yesterday.

The problem with things like this is that they don’t just fade into obscurity. Periodically, someone comes across it and starts engaging with it again. The reason I was harassed (and yes I would classify it as harassment) about that tweet yesterday is because I commented about how people were still engaging with my response to the tweet. Which means people are still engaging with the tweet is still impacting people.

I tweeted my displeasure that Jennings hadn’t deleted it. He actually responded to me with this justification.

This seems like a good responsible take, except that it falls apart the second you remember that people are still being harmed by that tweet.

Twitter does not have a mechanism to encapsulate old problematic tweets with an explanation about how you now understand that it was harmful, that you regret doing it and you want to leave it up as a reminder of the harm it did. Even if Jennings wrote something to that effect among the replies, there are 1600 of them. People can hardly be blamed if they don’t know he’s sorry about it now. It also doesn’t stop the tweet from being used by others who do just think insulting wheelchair users is just hilarious.

A far better response would have been to take a screenshot and write and publish an apology and then delete the tweet. Jennings is famous enough that he could have found somewhere to publish that apology. Then he wouldn’t be whitewashing his past and he would have stopped the tweet that he supposedly now regrets from being used to harm others.

Someone accused me of just going looking for something to be angry about. They justified this argument based solely on the fact that the tweet is four years old and I talked about it yesterday.

But, it’s not going to find something that periodically shows up in my notifications. That’s just acknowledging that people are still interacting with four-year-old bigotry and that’s worth talking about. Bigotry doesn’t necessarily get stale and less bigoted with age.

You can’t absolve yourself from past bigotry if it is still harming people. Particularly if there is a way to stop that harm (in this case it’s as easy as deleting a tweet).

Jennings wants to be patted on the back for what amounts to fake contrition. I can’t believe any claim of taking responsibility if taking responsibility means justifying the continuation of harm.

One silver lining of this tweet’s latest resurgence is that it has inspired the #HotPersonInAWheelchair which is a brilliant celebration of disabled beauty and confidence. I do so love the confidence and snark of the disabled community.

Annie Segarra (you can support her on patreon. She also has a YouTube Channel) started it off with this

The whole hashtag is well worth a look, but be advised that some of the images may be NSFW. I certainly hope this protest will be stronger than the bigotry that inspired it.

Jennings should still delete that tweet though and finally really take responsibility for it by apologizing somewhere other than Twitter.

 

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

Click Here to Donate

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

Become a Patron!

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.

Buy Me a Coffee at ko-fi.com

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.