Cripping Quarantine: Corona Virus, Disability, and Mental Health

Content Warning for mentions of mental health and abuse

Image Description: The words "STAY HOME" written seven times in shades of green, purple, red, and yellow on a pale mint background
Image Description: The words “STAY HOME” written seven times in shades of green, purple, red, and yellow on a pale mint background

I have been in self isolation since March 16, I have only gone out twice since then and those trips were unavoidable to collect prescriptions. On March 16th, I woke up early because I knew that more serious restrictions due to the coronavirus were likely about to come into effect soon and I wanted to make certain that I had enough of my medications to hopefully weather a lengthy stay indoors so I was going to my local doctor’s office. I have preexisting conditions that may put me at higher risk for a severe COVID-19 infection. Those same preexisting conditions also put me at risk of potentially being denied life saving care in the event that I need a respirator.

I as a mad, physically disabled, autistic person may not meet the standards of the often terrifying triage that is taking place in areas where hospitals are struggling to meet the needs of too many patients with too few resources.

Better if I just don’t leave my apartment, my doctor agrees.

March 16th it turns out was the day everything was going to start shutting down, including the medical clinic I had just arrived at. The staff had apparently received word overnight that they should no longer see patients on site and start figuring out how to set up appointments over video chat.

As I and about a dozen other people waited outside the unexpectedly closed clinic for word from the staff inside, we tried to keep 6 feet apart. Ultimately, the doctors decked out in plastic scrubs, gloves, and face masks decided to see patients while only allowing us into the clinic two at a time.

My doctor renewed my two regular anti-anxiety medications and also wrote me a third prescription for Lorazepam to be taken as needed just in case. While I did not question the additional prescription I rather cockily assumed that I would be fine with my regular regiment of meds. I’d been doing very well up to that point hadn’t I?

It only took a few hours for some very severe anxiety to kick in as I realized that maintaining access to food was going to be difficult. The demand on delivery services which prior to the outbreak had never been a problem was suddenly very difficult. This in turn created a lot of financial anxiety as I realized that if I was going to get enough to eat during quarantine, I would be spending more on service fees as what orders I could get through showed up with less than half my requested items. Since then even getting a delivery slot has often been impossible. I may end up having to rely on takeout delivery which is much more accessible but also far more expensive.

I have been grateful for my doctor’s consideration that I might be put under even more stress and her efforts to lesson that burden repeatedly.

At the start of all this none of the emergency assistance measures had been put in place so the financial concerns were particularly stressful. Since the implementation of the Canada Emergency Response Benefit (CERB) and other form of financial assistance, some of those concerns have been alleviated but because the criteria for eligibility is ever changing and because all applications are being approved, the stress has just been put off for a later date. I now have to worry about having this money clawed back next tax season when I will most definitely no longer have it. I’m pretty sure I qualify but there is always that doubt lingering in the back of my mind.

Aside from the stress caused by figuring out how to survive in a changed world, I have also found myself succumbing to some of the symptoms of the shared trauma of this pandemic. For the first couple of weeks I tried to remain active and productive. I exercised as much as possible in the confines of my apartment, I tried to diligently work on my comprehensive exams. I ultimately succumbed to terrible emotional exhaustion which was made worse by the almost nightly vivid nightmares.

I have more recently slowed down significantly. I spend much of my time reading novels while only getting minimal work done. While I am not making great gains on my comprehensive exams, my stress level is much lower and I am sleeping better.

Please give yourselves permission to just give up expectations, it’s the best advice I can give you in this situation.

One of the things that I and several of my disabled friends have noticed during this time is that with the while world isolating, it brings the extent of our own isolation in general into sharp focus. It’s not normal to be a recluse when everyone is doing it.

To make matter worse, I haven’t been able to stay as reclusive as I’d like to. Two weeks ago, my estranged mother with whom I have not spoken for nearly two years decided to use the pandemic and my mental health history to try and force contact. She did this by calling York Campus Security on me. I have no idea what she told them. All I know is that one minute I was contentedly watching YouTube videos and the next I was answering the door of my apartment to two security guards because “a family member (my mother) had called and expressed concern for me”.

They seemed quite surprised that I was up and dressed and was not displaying any characteristics of either illness or distress. They even asked me to show them my student card so they could verify that they were speaking to the right person. While they were apologetic, it did not stop them from informing the university that I had been subjected to a wellness check. Based on the email I got from them it is clear that they did not explain that the check had been unnecessary. I also told them that I was not in contact with my family and had not been since well before the current global crisis started. I have no faith however that a security service that would subject someone to medical overreach my the university would have had the decency not to call my mother back after her interference and “concern” proved to be unfounded.

It is important to remember that abuse is actually more common now even for those of us who have put over 1000 miles between ourselves and our abusers.

That episode took me days to recover from and the university has no interest in recognizing that they have acted as a proxy for an abuser twice now.

In the midst of all this stress and coping, the one new thing that I have been working on is finally figuring out how to do my own makeup. Here is a picture of me trying to be goth

View this post on Instagram

#wednesdayaddams with better white balance

A post shared by Kim Sauder (@kimberleysauder) on

Image Desrcription: A pale woman with dark lipstick stands against a woodgrain wall. The shot is from below giving the impression that she might be lying down. She is wearing a dress reminiscent of Wednesday Addams

You can see some of my other attempts on my Instagram but be forewarned, I am not good at selfies or Instagram.

This pandemic has been hard on all of us but it has been an additional burden on disabled people as the response has not meaningfully considered our needs. People receiving disability benefits are largely not receiving further aid despite CERB being higher than disability payments. We are also a population that already relied on grocery delivery and nothing has been put in place to ensure that we maintain access to those services. Many of us do not have the option to even choose to risk our health and pop to the store. Shopping was already inaccessible to us.

This is such a stressful time and I am making my way through it, the best that I can. I hope that better policies are coming for disabled people but I’m also not holding my breath.

How to Support Me and My Work

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

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

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

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

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

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

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.

A Long Overdue Update

Image description: A blond white woman with cerebral palsy stands in a patch of tall grass in a garden outside the Humber River Hospital. She is smiling from her brief reprieve from the Psych ward.
Image description: A blond white woman with cerebral palsy stands in a patch of tall grass in a garden outside the Humber River Hospital. She is smiling from her brief reprieve from the Psych ward.

Hi Everyone,

It’s been a while and I’ll admit up front I might not be getting actively back into blogging for a while, though it is on my to do list (which is too long).

I’m just writing this to get you updated on why I disappeared and letting you know that going forward I need to focus on some issues in my life and really getting into the work of my PhD.

Last year, as a member of CUPE Local 3903 I participated in the longest post-secondary strike in Canadian history, something previously considered impossible for an English language university to accomplish. Quebec just has a better culture for getting angry when their educations are threatened.

The strike was long gruelling and full of emotional labour. The emotional labour of constant threats of vehicular death. The constant rhetoric from the university that cast me as an outsider despite my still being a student.

During this time I became estranged from my mother. This was an ultimately healthy decision but because of how long she had kept me isolated and emotionally dependent on her despite her abuse, it was hard. It is still hard but only in that not talking to mum tends to strain all the other family relationships.

The aftermath of the strike did not really calm things down, though I wasn’t threatened with bodily harm quite so much but I had difficulty getting myself regrounded in the academic environment.

I began dissociating and I knew that I wasn’t going to be able to pull myself out of this funk alone. So I went to the doctor and got diagnosed with anxiety, and PTSD (both conditions I am sure were not new just newly officially diagnosed).

I immediately began going to therapy but in my vulnerable emotional state, I chose my therapist very badly. She did help get me onto anti-anxiety meds and helped get me feeling slightly more grounded. Then she spent months isolating me from the few friends I see in person and isolating me more from my online presence, So isolating me from perhaps my strongest support network.

I had during the strike independently pulled back from blogging and some of my more inflammatory online activism. With a few exceptions. I stayed involved in the straw debate, though to a lesser degree than before and I admit I went unintentionally viral with #DoctorsAreDickheads

The stress of the attention was more than I could handle and I pulled away from Twitter even more. It took months for me to realize that my therapist was actually keeping me from moving forward with my life. The realization was uncomfortable and I spent some time trying to unpack it on Twitter

I had a lot of trouble processing that betrayal. I’m not sure I’ll ever know precisely what happened next because I began dissociating, this was quickly joined by a fugue state.

This means I didn’t even know who I was, what I was doing, or who I was communicating with. In my few lucid moments many online friends reached out in concern but because fugues cause amnesia, I assumed that I must have been hacked.

You see for the entire period of time I basically never left my bed. I knew I was unwell, I just didn’t realize that I was posting delirious and often hurtful things online. I’ve seen some of it and chosen to delete much of it.

I doubt I’ll ever get a full picture of what I was thinking or everything I said. I apparently called my brother about 20 times, I only remember two or three of the calls and I’m already mortified.

I understand completely, why people were concerned for my welfare. What I am still trying to come to grips with is that my sister decided to channel her concern over online posts that to my knowledge never threatened violence (there was a ton of sexual harassment and I could not be more sorry). The harm I caused during that fugue was emotional. Yet my sister decided that it was better to call the police than come check on me.

I was placed under what is known as a Form 2 which means the police are going to assume you are violent and you have no option for deescalation.

I made the mistake of trying to deescalate. I was lucid enough to know what cops and paramedics at my door meant but I was still unaware of my delirium induced online posts.

The fact that I was still unwell and prone to delusions, I remained I think surprisingly calm (by which I mean I only fought the police with rhetoric, I got loud) but I was still in a fugue state, I’m pretty sure at one point I thought I was my sister, at another I was convinced I was going to marry the star of the show I’d been watching in my more lucid moments.

I probably had at least 4 separate narratives going but I wasn’t violent.

Yet, I was still grabbed and shackled in the ambulance.

Dark bruise on pale skin from being grabbed while being involuntarily committed

That bruise is gone now but as it faded it revealed the thumb print of whoever it was who grabbed me to shackle me to the gurney.

I was shackled to that gurney for I don’t know how long. I lay there shackled long after I was removed from the ambulance. I was horribly uncomfortable and begged to be let out.

I did eventually convince security to let my left arm free because the shackle was forcing my shoulder into a painful and unnatural position because of my cerebral palsy.

This was my first clue that the psych ward is not prepared for physically disabled people.

I live tweeted much of my stay in the psych ward so you can check out my Twitter for more details on that.

I actually came out of the fugue pretty quickly upon getting to the hospital but I was on a 48 involuntary hold (known as a Form 1). I stayed for 8 days because my resting heart rate and blood pressure were disturbingly high.

I got very little in the way of psychiatric care. The attending physician seemed to be looking for the sort of person who is irrationally violent.

I was extremely compliant on the psych ward.

Well I was extremely compliant until something was inaccessible and then they had to deal with the full force of having me stay on as a voluntary patient just to figure out if something was wrong with my heart. I got cardiology tests on the psych ward that I don’t think the attending psychiatrist knew about in advance.

He seemed surprised that I was on a 24 hour holter heart monitor and was waiting for an echocardiogram. I think he was trying to discharge me.

I was ultimately discharged shortly after I received the echocardiogram. I have yet to hear back if any of those tests had any interesting results.

So I still don’t know if the dissociative fugue was caused by the mother of all panic attacks or if it was exacerbated by illness. Just like the exact details of everything I thought and did during the fugue, I will probably never know. I however, suspect that this latter ignorance is more likely to be blamed on how I was hospitalized and how my symptoms were initially interpreted. I didn’t get a blood test until I’d been there nearly 48 hours and was lucid all of the time.

Skipping ahead a bit (again see Twitter for more Psych ward details), I am now back home recuperating from my ordeals.

In the immediate I need to do two things complete my complaint against the therapist who tried and failed to derail my life (this is going to be very stressfull)

In order that my life not get further derailed, I need to get more actively focused on my PhD studies again. To that end my therapist from hell followed by my stint in the Psych Ward gave me a great idea for a dissertation topic and that is what I will be focusing my energy on.

Hopefully, if my life calms down (like after I’m done with the complaint against my former therapist) I will blog a little more regularly again.

Until then 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.

Let’s Contextualize the Suspension of that University of Guelph Prof who Bullied a Disabled Student

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Image Description: A monochrome image of a graduation cap

Yesterday, a story came out about a University of Guelph professor who had openly mocked a disabled student during lecture. This resulted in the targeted student leaving the room along with his aide. Many of his classmates followed suit. The professor in question has been placed on leave and the incident is being applauded as a victory for justice.

While the actions of the professor were abhorrent and he deserves to have been suspended, there is a lot of context that this story is leaving out in favour of celebrating the nondisabled students who walked out in solidarity with their classmate.

I wrote a twitter thread on this yesterday but based on some of the responses I got from it, I think that a full blog post is necessary.

This is only a news story because of the solidarity of nondisabled students. I wish nondisabled people understood how much power they have to improve or limit the lives of disabled people.

The story itself treats the abused student as a prop. They are not named and are never interviewed. The entire narrative is framed around the recollections of nondisabled people.

The sentiments expressed are generally positive and supportive but the issue is also clearly framed as a one off. One bad professor. The students imply they will stand against any other injustice. But will you?

More importantly, do you? The thing that makes the Guelph story unique isn’t that it happened. The more shocking thing is that it happened in public. Disabled students experience discrimination from professors regularly. I am willing to bet that professors refuse to accommodate disabled students daily. It just happens behind closed doors and they tend to use less inflammatory language.

Some professors write op-eds and publish academic articles advocating exactly that. Where were the mass walkouts in solidarity then?

Solidarity in the Guelph incident is positive but it’s important to put it in context. The stakes for protesting students were low. The professor was a sub. Students were risking walking out on a single lecture not the entire course for the semester. They were not challenging the actual course director who has control over their grades.

Would they have walked out if it had been the course director?

Would they have been willing to potentially sacrifice an entire credit?

As responses to my twitter thread have shown me, the professor in question is not popular. I’ve received several responses from his former pupils that are all along the lines of,

“Oh, I had him as a prof and he’s a massive douche”

That reinforces the idea that people who see this story interpret it as an isolated incident perpetrated by someone widely considered detestable. There is no consideration of whether his behaviour fits into a system of discrimination against disabled people in academia.

It is more comfortable to see his behaviour as wholly aberrant instead of understanding that the only thing surprising about it is that he did it so publicly. There are many more faculty members slowly tearing down disabled students in the safety of their offices.

Where is the protest over that?

The Guelph incident is tragic not just for the abuse that one student suffered but because the way it has been framed in the media allows people to believe such incidents are rare and that they are inevitably met with swift and effective push back when they do.

 

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

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

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