Trying to Maintain Access to Essentials During Covid-19 While Disabled

image description: A very crowded grocery store with many people waiting at the checkout like

The world it seems has dissended into chaos as a result of the novel coronavirus. The real problem here is that it leaves vulnerable people at risk of not being able to quire groceries. I am personally am facing imminent food insecurity as the ways I am able to obtain food come into higher demand.

I rely on grocery delivery services to get food. Not only are these workers working through the added barrier of far too many people being in the stores at one which make their jobs harder but they are also being inundated with more orders than usual as people choose to remain home rather than shop for themselves.

This leaves disabled people like me in the position of being left the scraps. I have no way of knowing if the groceries I ordered yesterday will be available when someone is finally going to be able to shop for them tomorrow evening. I’m not optimist. This means I will likely have to make multiple orders over several days. This adds additional costs that I can already ill afford.

I was relying on receiving student loans over the summer but with cancellation and universities closing, I might not be able to access that option.

The problem of overcrowding and panic buying at the grocery store presents issues beyond placing vulnerable people into food insecurity. It will also help spread the virus. Toronto (where I am) and other places have started to experience community spread of the disease. It is so important to be able to practice social distancing right now. Crowding grocery stores at this time puts everyone at much higher risk.

We desperately need the trend of panic buying to end not only so other people can access necessary supplies but to also make the act of shopping safer. It will be a total nightmare if there is a covid-19 outbreak at a grocery store.

Please plan for and act responsibly during this time. One of the biggest things you can do is to STOP PANIC BUYING! You are creating vulnerabilities in the community by doing so. You are also ensuring that grocery store are packed to the gills which seriously increases the risk of transmission.

Only go to the store if you need something, and if you are able do that shopping yourself. Disabled people and other people at high risk, rely on delivery services, so please do not monopolize them.

If your in the financial position to do so please consider those of us who are placed in financial trouble by this pandemic.

Remember, getting through this is going to be a community effort.

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

You can support me on Patreon

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

Months After Getting out of the Psych Ward: The Work of Coming to Terms with What Happened and Moving Forward

On the 27th of December, two days before my birthday, my brother texted me to see if I had any birthday plans. This was the first contact I had gotten from any member of my family in months. My last exchange with my brother ended with him accusing me of trying to start a fight because I was trying to explain how I felt post getting out of the psych ward after having been forcibly committed based on a 911 call by our sister from whom I was already estranged. An estrangement that was her decision.

This text from my brother and a stand alone “Happy Birthday” on my actual birthday is the only contact I’ve had from him. I found out later that he had actually called a friend of mine, to check up on me before he sent it. My friend who was out of town visiting family for Christmas couldn’t for obvious reasons actually give him that update.

It is hard to explain the hurt that comes from your family abandoning you during a health crisis. I’m not saying that talking with me during the period directly after my commitment to the psych ward was easy. I’d experienced a psychotic episode and the confusion that resulted from that terrifying experience was overwhelming. As a result of both my estrangement and an uncritical hospital staff, I still don’t know what was said to justify the 72hr involuntary hold that I was placed under. Involuntary holds are for situations where people are considered to be a danger to themselves or others which despite my delusional state of mind at the time of my hospital admission did not describe my situation. I was not suicidal nor had I threatened anyone. By the time the 72hr hold was put in place, I was already lucid and I remained lucid after that. The hold was justified to me by saying that my assertion that I had no interest in self-harm differed from what my sister had told 911.

At the time of my commitment, I hadn’t spoken to my sister in months. She did not have an up to date understanding of either my mental health in general or the events that led her to calling 911. She was actually describing what she had learned second hand from my brother.

I had been going in and out of lucidity for a couple of days but the events that led police to show up at my door only spanned about 10 hours. I had made several odd and harassing tweets on twitter (all of which I have since deleted) that were out of character. I had also made about 20 calls to my brother, none of which that I can remember. My memories of what led up to being hospitalized are unclear, I remembers moments of lucidity and have some vague recollections of delusions.

It is not that I do not understand my brother’s concern or even that I deny that at that point I needed to be in the hospital. It is more that the way it was done and the silence and lack of empathy that I experienced thereafter only compounded my confusion and my ability to try to understand what had happened to me.

The police, when they arrived did not even attempt to communicate with me what was going on which only fed the confusion and panic that I was experiencing. I had been pretty lucid if confused when they showed up but by the time they removed me from the apartment I was completely psychotic.

Even then, I experienced moments of lucidity. I clearly remember being in the ambulance on the way to the hospital and begging a paramedic to talk to me. I said I was frightened and confused and that it would help if she communicated with me but she just stood there silently.

When I arrived at the hospital, I was just left restrained, which caused me to further panic. I do not know how long I was left like that. I just remember going through repeated delusions where I believed that I was dying. I’m not sure if I passed out or was drugged but I eventually came to my senses, I was still restrained but now I was in a different place and I was wearing a hospital gown.

I begged to be let out of the restraints but was repeatedly refused. I did eventually convince them to release my left arm which is affected by cerebral palsy by pointing out that the angle at which it was restrained was painful and likely to cause injury (I have since experienced months of pain in that shoulder and X-Rays show a very distinct gap in that shoulder).

I’m not sure how long I waited to be released from the rest of the restraints. I was then transferred to the emergency psychiatric ward where I spent the night and most of the next day. It was here that I was officially put under the 72hr hold. I was then transferred to the regular psychiatric ward where I spent the next 7 days.

It is hard to explain the experience of being lucid but still very confused from having recently been delusional. My memory was terrible and not just about the events directly preceding my arrival at the hospital. On the rare occasions that I was visited by a psychiatrist, he maintained questions around the mystery 911 call. I mostly remember being frustrated with him both for the confusing and not constructive sessions but also for not taking seriously my complaints about the general inaccessibility of the psych ward or my concerns about my heart rate.

This part I remember quite clearly. The entire time I was in the hospital I experienced intense dizziness which was likely the result of the fact that my heart rate stayed around 180bpms until just before I left. I know this phenomenon started before I arrived, though no one actually asked me about it.

It’s still strange to think about because it was obviously a concern. When I reported that in addition to having that high heart rate my chest also hurt, I was rushed to radiology for a chest X-Ray. The nurses often commented on the fact that it stayed so high but it was never something that was discussed with me beyond, “here take this benzo”. The fact that this didn’t actually meaningfully lower my heart rate didn’t seem to bother anyone but me.

I was able to express my concern strongly enough that I spent 42hrs on a Holter heart monitor and got an echocardiogram but it was never really meaningfully discussed beyond “we’re going to make sure nothing is wrong with your heart”. The physical impact of having an elevated heart rate for days on end never seemed like a concern.

Image description: A woman seated on rock steps pulling down the neck of her blue Tshirt to show the holter heart monitor that she is wearing

It made it so I couldn’t actually participate in the psych ward the way I was supposed to and I was frightened to shower without a shower chair. It took two requests and over 24hrs to get access to that chair. The nurses also didn’t seem to understand that my physical condition differed from what I normally experienced out of hospital. They asked ridiculous questions like “how do you manage this at home?”

“Well I’m not usually so dizzy that I feel like I could pass out at any moment while upright”

The lack of communication was so complete that “the rules” were not even explained to me. When I arrived I had been shown the common room and dining room and that was the extent of my introduction to being on the psych ward.

Because I was not interested in self-harm and because I was still confused from my psychotic episode, it didn’t occur to me to consider everything I did through the lens of “could I use this to kill myself or someone else” which is how I ended up breaking the rule against having glass bottles on the ward.

I had to hyper focus on just getting through each day on a deeply inaccessible ward where no one considered my access needs and at times penalized me for having them. I wasn’t able to be “independent enough”. I’m still unclear on what they think independence is, though I’ve managed to live independently without major incident in the nearly six months since I left.

During my time in the psych ward, I had few visitors. My other sister flew to Toronto from Saskatchewan but only visited me three times. She treated my hospital stay as something that had interrupted her impromptu vacation in Toronto. While she did bring me a few items of clothing from my apartment, they were not enough to cover the 8 days I spent there.

I ended up being brought clean shirts from the two friends who took time out of their days to visit me. Though I did end up living in hospital gowns longer than I had to (you aren’t allowed clothes while on an involuntary hold). Both of these friends learned where I was through Facebook and independently volunteered to bring me things. I will forever be grateful to them both.

When I was finally released 8 days after being admitted, I had learned nothing useful about what had led to my psychotic episode. No one had discussed treatment moving forward, other than to prescribe me benzodiazepine. I was otherwise simply told to visit my GP.

The hospital wanted my sister to come pick me up and I texted her to come get me. I ended up leaving her in the hospital lobby and getting a cab home when she revealed that she had decided to stop and get lunch before checking me out of the hospital. I couldn’t after all expect her to put my needs over delaying her meal by 30 minutes while trying to get off a locked ward.

There is something terrifying about living alone after a psychotic episode. Not only are you terrified it will happen again but you are scared that once again you will have to go through it completely alone. It took several months for me to finally be prescribed a good combination of anti-anxiety meds to finally have this fear subside.

One of the frustrating things is that I’m sure that I could have just been driven to the hospital if only I had someone who cared enough to do that. Instead I was confronted by unsympathetic police officers who invaded my apartment without even trying to explain what was going on. I am still recovering from injuries sustained by being unsafely restrained while being left to panic.

My mental health is doing much better and the medications that I’m on are working well but I still feel very alone. This was a rather horrific way to find out that no one in my family was willing to sacrifice even their own comfort to support me. Not while I was in the hospital or after.

While talking about this before I have been accused of “just seeming angry at everyone”. I do in fact still feel a great deal of anger toward the police, paramedics, and hospital for how my care was mishandled. When it comes to my family though it is more a feeling of abandonment. One that was probably a long time coming. It was a final act of indifference that proved that they are and have always been unwilling to inconvenience themselves for me. Even when I am powerless in the hospital or trying to pick up the pieces after getting out. That members of my family will use one of the worst events of my life to go on vacation and feel slighted if I have the audacity to expect to be put first during that time.

I am so grateful that I am a student in disability studies and that I was and am able to be open with my department about what happened to me even while it was happening. One of my professors even offered to help break me out if I thought they might try to keep me. I am grateful that they supported my decision to change my research focus to looking at the ways family and society still hide mad/disabled women away and discourage us from taking up space in the home and in public.

I am slowly getting back into the rhythm of things and being excited at progressing towards my dissertation. I still have a lot of work to do but I am looking forward to getting it done.

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

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

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

Redefining Independence on the Psych Ward

Image description: A blond white woman wearing a blue, shirt,beige shorts and a fanny pack, walks out of some tall grass arms outstretched
Image description: A blond white woman wearing a blue, shirt,beige shorts and a fanny pack, walks out of some tall grass arms outstretched

I recently spent eight days in the Humber River Hospital psych ward. It was a strange experience, made stranger by the fact that my presence on the ward made it an atypical experience not just for but for those who work there as well.

There are two things that made my stay on the psych ward difficult. First no one told me anything. There’s a welcome package, they apparently give new patients when they arrive on the ward. I received this package the night before I was discharged. So I spent the entire time on the ward not knowing what was expected of me. This was conveniently or inconveniently (depending on your perspective) overcome by the fact that the psych ward was almost entirely inaccessible to me in my current medical state.

I had initially spent my first night and almost the entire next day on the emergency psych ward. They watch you 24/7. There are CCTV cameras pointed at your bed. Yet, I was treated better there than I was on the general ward. The nurses, every single one treated me like a person. They were empathetic to the way I had been violently brought to hospital.

They were as accommodating as they could be. They gave me time to come out of the brain fog that followed my dissociative episode. One nurse went above and beyond to make sure I would get a breakfast and lunch that I would ear.

When I asked to take a shower, they immediately emptied the room that was clearly used for storage so that I could feel a little less gross.

The doctor who visited psych emerge was also kind and empathetic. There is literally nothing to do in the emergency psych department. So she brought me books to read.

So my transfer to the general ward was a bit of a culture shock. I was wheeled up by a porter but then lead on foot to be shown the common room and lunchroom. The importance of knowing these locations is important on the psych ward, I almost never set foot in either.

On the psych ward it became apparent that my resting heart rate was dangerously high. This resulted in my being very dizzy. As a safety precaution I rarely left my room. The one time I did try to independently go to the lunchroom and get my breakfast I became horribly dizzy only to discover that most of my meal was dairy based and I’m lactose intolerant.

I suddenly had try and negotiate food accommodations along with physical accommodations that challenge the very way the psych ward runs.

By not getting my own meals or returning my own trays, I was not demonstrating “independence”. At some point the nurses just start doing sitting/standing blood pressure tests which indicate that my heart rate remains dangerously high. They couldn’t ask me to leave my room. This time when I wanted a shower I asked for a bath chair because I was no longer certain I could stand long enough for a shower without passing out. It took a long time to get that bath chair. I had to ask twice.

Despite my stay in the psych ward being objectively atypical, I was still being judged by the standards of “independence” used by the staff to determine emotional progress. Even though they objectively knew I could not participate in these daily tasks, I was still held to the same standards as anyone else on the ward.

I was in the psych ward for 8 days. Only the first 48 hours were mandatory. I beat my form 1 (the document that says you can be held against your will because you may pose a risk to yourselves or others) easily. Admittedly the attending psychiatrist never mentioned discharging me right away. By that point I had already had a chest X-ray had 5 vials of blood drawn. I was concerned about my heart, so as long as they focused on that I was fine to stay.

My weakness, largely made my stay uneventful. I had the odd spat with a nurse who thought she could run a power move on me but for the most part, I relaxed, napped and read.

My occasional forays out of my room only happened when my sister was visiting and I felt like I had a chaperone. She would return my food tray for me etc. One day I felt up for a walk, so went with my sister to sign myself out. This is where I learned that despite being a voluntary patient, I had no privileges. To add insult to injury, no one at any point had explained that I was under a privilege system at all.

My sister doesn’t like conflict so, she’s already scratching our names off the sign out sheet. I however, stared at that nurse and demanded to know how I could be subjected to a privilege system I had never been made aware of, particularly as a voluntary patient. Then I glared at her until she made a phone call.

The photo at the top of this post was taken during that brief break for freedom.

I was discharged without much fanfare not long after receiving an echo cardiogram there was no medical followup about my heart issues (which have calmed down somewhat since leaving the hospital) or for the dissociative episode I experienced. All I got was a paper with a lack of detail and the diagnosis of psychosis. I suspect the truth is more complicated than that. I’ve been describing it as a dissociative Fugue. I came to myself quickly enough in the hospital after people stop reacting to me with anger or violence.

This is how I was able to so compliant up to the point of inaccess. Yet my way of surviving independently did not match how the people running the psych ward viewed it.

It’s a good thing they didn’t make performing independence a criteria for my discharge. Or I might still be there. I’ll have to wait to receive my records to find out why I was really discharged and if the hospital learned anything useful about me at all.

How you can support my work

Until my life starts to get back to some semblance of normalcy, I hope you will support me in my goal of completing my dissertation in any way that you are able. Whether it be through emotional support or by financially investing in my academic success.

My dissertation is tentatively titled “We Still Hide Madwomen in the Attic”

It will be an autoethnographic (meaning I will be using myself as a research subject) study of how mad/disabled women have been and still are silenced and isolated both directly through things like abuse and involuntary committal to the cultural idea that mad women in attics are just a literary device for gothic novels.

In the immediate, I need to complete my comprehensive exams which necessitates a lot of reading. Some of the books are out of print and hard to find. I have created am amazon wishlist (it’s not exhaustive and will likely be added to). If you could support my work by purchasing one of the books on that list that cannot be had in kindle format, I would really appreciate it.

Kindle books read on an iPad are really the most accessible format for me but Amazon does not allow for the purchase of ebooks through wishlists. So I have set up an email solely for people who want to financially support my work. I would greatly appreciate gifts of amazon gift cards (I’ll even tell you which books you bought me)

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

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.