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

I Stand With Wet'suwet'en: Don't Use Disabled People to Shame Protesters

Disabled people can be a very convenient scapegoat to either be the victim or the villain in just about any social issue. When it comes the environmental causes we have certainly been both.

In the often misguided war on single use plastic we are both the villains for needing many single use plastic products. We are also largely ignored as bans on things like plastic straws gain momentum. The latest battle is one where we are being used as convenient victims to shame the growing national protests in support of the Wet’suwet’en hereditary chiefs against the encroachment of a nationalized pipeline going through an unapproved route through their territory.

This issue is also so much bigger than the environment as it is also primarily an issue of Canadian colonialism and racism against Indigenous people. Yet, a British Columbia disability org, Disability Alliance BC wants to reframe an issue about land sovereignty and reconciliation as an issue of accessibility. This is a viewpoint that at least one news outlet seems happy to parrot.

It places the presumed access needs of disabled Canadians over the rights of Canadians to protest and over the rights of Indigenous Canadians.

I am appalled by the colonialism being practiced in my name and I want to express in the strongest terms that Disability Alliance BC does not speak for me.

I condemn completely the very idea a weaponizing disabled people in service to colonialism and placing our comfort and convenience against the rights of Indigenous people. Because, let’s be clear this isn’t an argument about conflicting rights. This is largely an argument against inconvenience. The same kind of inconvenience that everyone is intended to experience as a result of these kinds of protests.

Disability Alliance BC could be spending its time trying to mitigate the inconvenience to disabled people who lives might be disrupted by the current wave of protests. They have by no means shut down all travel in the country. They have instead chosen to shame protesters who want to support reconciliation and the Wet’suwet’en protests, rather than look for available solutions and place the blame where it really belongs. On the doorstep of a colonial government that both seeks to further entrench Canada in colonial violence and which on an every day basis fails to invest in accessibility for disabled Canadians. If Canada cared about accessibility disabled people wouldn’t be able to be used as a stick with which to bludgeon protesters because we would already have options to deal with unexpected travel delays.

If disability and access must come up in this conversation let it be one of criticism of how we still don’t have those options and how that is a structural wrong that should not be placed at the feet of protesters. Let the conversation also highlight the additional barriers Indigenous disabled people face as a result of colonialism.

Do not, however, legitimize the idea that protesters are wronging disabled people. Society already did that. I know I am not the only disabled person who does not want to be used as a tool to deny justice to others. My humanity should not and demonstrably in this case does not come at the cost of the humanity and rights of others.

I stand with Wet’suwet’en

I condemn the rhetoric of division that puts my rights and comfort above the rights of others. Particularly when their rights are being actively attacked by the government. When they face direct intimidation and violence from the RCMP.

I stand with Wet’sewet’en not with Disability Alliance BC

On Deserving to Have your PhD Funded

Image Description: A Photo of my Masters of Art Certificate
Image Description: A Photo of my Masters of Art Certificate

There is a lot of advice about getting advanced degrees, particularly PhDs one of the big ones being

Don’t do it unless you don’t have to pay for it.

PhDs are expensive and time consuming. When I was accepted to my PhD, I was offered a funding package. It barely covers my rent, much less my tuition. My funding is also contingent on whether I am working or not. My health over the last year has been in shambles for a variety of reasons and my ability to work has been compromised. Oh, I’m accommodated but I receive my money in 3 separate payments. The 4 hours a week they pay me to work. Then a smaller amount to that used to be paid in the paycheck but isn’t anymore for some reason. Finally I get another few hundred dollars the following month in recognition of both my funding and the fact that my accommodations state that I am well enough to work 10 hours a week (which is the standard ideal average set by the university. I just need my tasks to be accessible. I never asked for less work.

This 3 payment system makes it difficult to impossible to survive on a budget that already also includes a student loan.

If I wasn’t a PhD student, I would be homeless or a “burden on the state” those are just realities that I have to live with. Being a PhD student keeps me fed.

My research is also going to require field work which will cost money. I will have to return to my hometown and acquire all of my old school and medical records.

I also have to consider whether I have access to research materials in an accessible format. The more books I can own in kindle format, the more organized my research will be. I am of course investing my own money in this endeavour but I am going to come up short.

I have decided to start asking the readers of my blog to consider supporting my PhD work in a number of ways. This decision has lead to a lot of backlash though largely not by the regular readers of my blog.

I am receiving criticism mainly from trolls on twitter but I am also getting shamed on reddit and it all comes down to this idea that if I ask for money that I must be some kind of entitled fraud.

For the record, I’ve thus far been given a whopping $90 which I spent on ebooks. The idea that the simple act of asking for help constitutes entitlement is interesting. If only Jordan Peterson’s fans were of the same opinion about him while he was making thousands a month on the site (until he was kicked off).

I currently make a whopping $45/month on patreon. There seems to be this false idea that the mere act of asking for money or other help immediately results in success is also frequently present.

So do I “deserve” to have my PhD crowdfunded? That’s up to other people to decide. I do know that my research has value and has already peaked the interest of a number of fellow academics (don’t worry fam, I know we’re all poor).

My blog stats are exploding today, mostly as a result of people enraged with the idea that I might be overly entitled for asking for things that I have no control over whether I receive them.

There is also just the issue of what online content counts as the kind that people can “legitimately” turn into businesses. My blog content is often activist in tone and many seem to think that politically active marginalized people can survive on nothing but air because they get very angry when we remind people we need to eat and pay rent. The idea that my activism isn’t work is always ironic particularly in September when my blog stats let me know just how many universities have courses that use my work.

This has never been about whether I deserve to have my PhD funded and everything to do with who is allowed to personally place value on their own work. I am not forcing people to give me money. There is no pay wall on this website.

Do I deserve to get paid for the work I do, yes. Are you personally required to put up the money, no.

Thank you for coming to my rant on work, ability, and worth

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

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

All the ways You Can Support Me Completing My PhD in Critical Disability Studies

Image Description: A white woman with blond hair and glasses is smiling at the camera while wearing a white button down oxford shirt under a green cardigan
Image Description: A white woman with blond hair and glasses is smiling at the camera while wearing a white button down oxford shirt under a green cardigan

Don’t I look scholarly? Don’t actually answer that it’s a purely subjective question. As you may or may not know (depending on if this is your first time here) I am currently in year 5 of my PhD and it’s time to get this show on the road. I still have a few requirements that I need to meet called comprehensive exams before I can start on my dissertation properly.

I am forever a PhD student and never a PhD candidate (you aren’t a candidate until you are in dissertation phase)

My future dissertation is tentatively titled “We Still Hide Mad Women in the Attic: An autoethnographic study of how disabled/mad women are treated when I try to take public space.

The dissertation will be an in depth autobiography of my life largely lived in both socially curated and physically forced isolation. My story will be juxtaposed with the real life stories of the mad women history hid away n attics or asylums. The story of hidden disabled and mad women now and in history would not be complete without an understanding of the mad woman in culture. Am I my own person or am I little more than Bertha Rochester raving in her attic for the sole purpose of creating the moral conundrum “is it wrong to cheat on one’s mentally ill wife” (the answer is yes by the way).

In order to complete this research I am going to need to do a lot of reading (of course). My preference for reading academically is to use kindle books on a iPad because it makes taking and organizing notes simple There are, however, a number of books that cannot be had in kindle format. To that end I have created an amazon wish list specific to the books that cannot be gotten in kindle format (I may add more later). That list is

Books I need for my book audit comprehensive exam that cannot be bought for kindle

I have created a similar list for my dissertation at large but the time frame for that isn’t as pressing

Dissertation Books not to found on Kindle

Unfortunately, ebooks are themselves not free and while the selection of academic books now available for kindle is growing but so is the price of ebooks. If you would like to help with my real book fund. You can send me an Amazon Gift Card to

kimberleyjanephd@gmail.com

(this is not my personal email, I will not be answering queries through it. Find me on Twitter if you want to talk)

You can also support me directly financially in a number of ways.

You can sponsor me for a monthly amount on patreon

If you are only able to make a one time contribution you can transfer money to my paypal

If you enjoy a little whimsy with you direct giving you can buy me a coffee (contributions must be in multiples of three uses paypal)

Buy Me a Coffee at ko-fi.com

If you prefer to buy me something that would improve my quality of life

I have a disability accessibility wish list too

If the idea of using a third party site makes you uncomfortable, you can also send me an interac e money transfer direct from your bank account to the email,

kimberleyjanephd@gmail.com

All items and monies received will be used directly to fund my PhD, maintain the running of this blog and cover living expenses (can’t get a PhD if you are homeless and have no food).

If you cannot support me financially but still want to help, share this post widely. Share my other work widely (I get a tiny bit of ad revenue)

As always thank you for your support, I can’t wait to get into the meat of this dissertation. The stories of disabled people are important and far to often not told or worse, told by someone else.

The Emperor Wore Jorts: An Autopsy of the CUPE 3903 2018 Strike from the Perspective of a Disabled Union Member

Image description: Geese blocking traffic as though they are a picket line
Image description: Geese blocking traffic as though they are a picket line

The CUPE 3903 York University strike is not a topic on which I am an expert. I was an active local member throughout the strike that lasted from March 5- July 25 2018. It was a surreal experience not least of all because no one expected the strike to go on that long and yet the fact that we hold the record for longest post-secondary strike in Canada happened with almost no external notice. I myself was in Ireland attending a Summer Law Institute the day we broke the record. My return to Canada in late June was a return to the picket line that I had left.

Image description: Me in Ireland My hair is also on vacation and is trying to get to know my glasses better by being shoved forward in a blond triangle
Image description: Me in Ireland My hair is also on vacation and is trying to get to know my glasses better by being shoved forward in a blond triangle

This is not going to be an in depth autopsy of the strike but rather the recollections of a single member who was keen to actively participate but who like many rank and file members of the local were isolated from those making decisions which often led to a distorted understanding of what was going on at any given time. Even in hindsight, I can’t put all of the pieces together on how we could achieve a moment in Canadian history (that admittedly no one but us cares about) considering all of the incompetence that has been revealed since the strike ended. I can’t help but believe that the local executive’s incompetence and  unwillingness to reconsider tactics is precisely why the strike dragged on as long as it did while we union members have few if any gains to show for our months of picketing.

From an individual standpoint, the strike is best understood through the rumours that ran through the picket lines and how we all got hyped up on small political wins we didn’t really understand. There is no single individual who can be blamed for the disastrous outcome of the 2018 CUPE 3903 York University Strike. I think it can be said however, that our local chairperson was the emperor with no clothes and yet he was treated as though he was draped in Armani (he has since been accused of sexual misconduct. Both the local and CUPE National are subject to HRTO complaints).

I showed up to picket on the first Monday of the strike. That first week I lasted three days before my body rebelled. Three days a week of picketing was the maximum my body could handle. I was already trying with little success to get what were called 8th line accommodations (there were 7 physical picket lines on campus). The union local equity officer didn’t think my doctors note was specific enough. After a strongly worded response explaining how medical notes are secret codes that mean more than what they say, my accommodations were approved.

I was sent a nonsensical quiz to see what 8th line work I’d be interested in. Nothing made it clear what kind of work you would be doing. My first job assignment that I turned town in a genuine panic was a managerial position. I can’t even remember for what anymore. I just knew I should not be overseeing people in such a chaotic situation.

At the time I just thought it was just people getting their bearings at the beginning of the strike but things never improved. Weird things started happening like a member of the local executive unilaterally decided to hire the graduate/faculty café to provide food for the strikers at an astonishing cost of about $10,000/week. The food was frequently inedible.

Image description: My smiling wearing a blue hat ,sweater and sunglasses/ I'm smiling while cuddling a husky. Strike dogs made the strike more bearable
Image description: My smiling wearing a blue hat ,sweater and sunglasses/ I’m smiling while cuddling a husky. Strike dogs made the strike more bearable

This wasn’t a day one decision. For a while the Sikh Temple provided our meals. It was a lovely arrangement of solidarity. It is also understandable that they could not reasonably be expected to keep feeding us for five months. The $10,000/week alternative was definitely bad though.

As for my 8th line accommodation, I briefly ran the CUPE 3903 Strike blog. An endeavor I created myself because of my discomfort with the way the communications team seemed to have no policies for content or quality control. They asked people to use their own social media accounts. There was no cohesive message. Embarrassing gaffes were made. At least with my little strike blog, I could keep things to union releases only and feel relatively confident that I wasn’t accidentally undermining the strike.

I was a passionate union member. For the first half of the strike I don’t think I forfeited a single picketing hour. Eventually the hits start getting to you or the wins turn out not to be the wind you thought they were.

We had the misfortune of going on strike during a provincial election. This fact alone is a big reason the strike lasted as long as it did. Initially the outgoing premier said she would not be legislating us back to work but as the election loomed large, one of her last acts in provincial parliament was to try to legislate us back so that we would not be on strike throughout the campaign season. Through a technicality I don’t understand where the New Democrats blocked the move, we were not legislated back to work. However, due to both the union’s and employers bargaining styles (employer says no, union has no actual functional strategy, just my personal theory) the fact that the strike would last through the election was almost assured.

Image Description: My epic strike fashion of a hat, sunglasses, plaid shirt and khaki pants and for some reason Christmas themed painted nails
Image Description: My epic strike fashion of a hat, sunglasses, plaid shirt and khaki pants and for some reason Christmas themed painted nails

In Ontario, the employer can bypass membership once to force a vote on a contract. We called it the Rat Vote and we defeated it handily. Both the Rat and Wynn failing to legislate us back felt like wins at the time. It felt like we were truly denouncing the employers offensive offer but these things really just delayed the end of the strike further. The longevity of the strike created cracks within the membership that had been simmering. Conspiracy theories flew fast and furious. Actual conversations were had round what kind of Marxists the various cliques were and if they were the “evil” kind of Marxists (there may have been rumours of a Maoist cult).

The labour movement might be based on Marxist ideals but I’m pretty sure you can plan and execute a strike without even knowing that there is more than one school of Marxism. The real issue of the longevity of the strike is that from a bargaining standpoint we were stuck and from a financial standpoint we were broke (that whole $10,000/week for good thing was a really bad idea). The union had made a number of financial missteps but the election wasn’t over so neither was the strike.

The strike dragging on this long had pretty obvious consequences. We lost a lot of the early vocal support and strike fatigue made it hard to get people to even show up to the picket lines. The decision was made to consolidate the existing seven picketing locations to two. One of the immediate results of that was the unintentional culling of several more local members from regular picketing because they couldn’t navigate the new social dynamics created by picketing with different people after months and for half those people doing it in a different place.

Picketing locations had originally been organized by academic program, so all the critical disability studies students (many of whom are disabled) who did not do permanent 8th line work had spent the first portion of the strike with the same people who had adapted our picketing strategy and space around accessibility. While we were lucky to bring our merry band of chaotic accessibility with us, not everyone at the new location was as committed to making sure the disabled members of the local got to participate in picketing.

One of the earliest accommodations for disabled picketers who were actually walking the line was the provision of chairs. Each picket line was provided with chairs but they were largely an accommodation for disabled members. I got in a confrontation about my right to sit down with a man who had been monopolizing a chair. He questioned my disability status. He questioned the disability status of the other people sitting in chairs (can confirm I knew them all to be disabled). He, ultimately, let me have the chair but he felt he had been wronged. He was eventually asked to leave the picketing area for making a scene. He returned the next day and tried to get public support for the “harm I did him” I really don’t know. It escalated onto one of the union listservs (not one I had access to).

It was decided that this incident needed to be brought to the membership at an SGMM (special general membership meeting, they happen weekly during strikes). That week’s SGMM was to be held at OISE (Ontario Institute for Studies in Education) at the U of T. I had designated a friend to speak on my behalf because, I no longer felt safe on the picket line. We sat through the usual SGMM filler, we went through the minutes. I can’t remember what exactly made the SGMM drag on (there was always something dragging those out) but just as it was about time for my friend to advocate on my behalf, several disgruntled members of the local’s unit 2 (contract faculty) decided to start a shoving match of the hallway at OISE at the University of Toronto. The local Chair had to immediately end the session to try and put a stop to the drama in hallway.

I ended up needing to be escorted to the subway by a friend.

My presence on the picket line was spotty after that. We tried again to bring up ableism on the picket line at the next SGMM but by then the hallway fight from the previous week had changed the tone of the meeting and it didn’t feel like anything was accomplished. I never really felt comfortable on the picket line going forward. I’d show up more to visit with friends I knew would be there than out of real fervor for the cause.

The strike was finally ended on July 25, 2018 by Doug Ford’s conservative government. The union is fighting the constitutionality of that back to work legislation. If they win, I hope they have a better strategy for the next time they are sitting across the table from our employer.

How to Support My Work

So now for the very in depth appeal for support for mu PhD. Please read through 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 wishlist 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

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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