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.

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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.

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Katimavik Completely Changed My Life for the Better but I have Misgivings about it Coming Back

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Image Description: A photo of nineteen year old me crouching in a refrigerator that has had all the shelves removed. I had short bleach blond hair and am wearing a white hoodie featuring characters from Charles Schultz’ Peanuts comic.

 

When I was 18, I was diagnosed as being autistic. I finally had an explanation for all the social misunderstanding and interpersonal faux pas I’d experienced. I now knew that every time I was punished for some mysterious crime with the all too frequent admonishment ‘It’s not what you said, it’s how you said it” were not my fault. All those hours spent relegated to my bedroom wracking my brain to try and figure out why I was even in trouble suddenly made sense. Diagnosis for me was freeing. It was, however, still a diagnosis which said that I was medically predisposed to be terrible at navigating social situations, particularly in new environments with people I didn’t know.

So, obviously three months later I got on a plane to BC with the full knowledge and intention of moving into a house with eleven strangers.

I did this through a government-funded program called Katimavik which took Canadian or permanent resident youths (between 17-21) from all over Canada and divided them into groups of 11 and over the course of nine months placed them in three communities throughout Canada with a different project leader in each location. The intention was for us to do full-time volunteer work, establish strong links to volunteerism and engage with the varied culture of Canada by immersing ourselves in the communities in which we lived.

It was without question one of the most important experiences of my life. I can say without doubt that I would not be the person I am today without having done it or having known my housemates.

Nearly 12 years later though, I am conflicted about my experiences in Katimavik because I almost didn’t qualify to participate and because I know many more disabled people were denied access to that opportunity.

I have sat quietly with my discomfort over the fact that I was privileged enough to be considered “not disabled enough” to not be deemed ineligible. I was able to do this largely because not long after I left the program, the Conservative government defunded it. First rolling back funding so that it was a ghost of what it had once been and then ultimately shutting it down altogether.

The Conservative government is no more though and the Liberal government led by Justin Trudeau (who was a staunch supporter of Katimavik in his pre-politics days) has reinstated the funding.

Katimavik was originally conceived of in the 1970s. It’s 2018 and I fear the discrimination that was built into the original program with remain in its rebirth.

This is significant not only for the injustice of denying disabled youths the chance at this kind of formative experience but because of the opportunities it leads to.

Prior to Katimavik, I was completely unemployable. I spent the first year after high school futily looking for a job to pay for university. I didn’t find one. I mostly spent the year playing housekeeper for my grandmother. She did pay me but was also clearly more interested in having company. So I did very little work as she constantly derailed my attempts to clean with conversation. I maybe worked 1 hour in every 5 spent at her house. I was only paid for what I worked. I made almost no money.

After Katimavik, with a resume that had been boosted by the volunteer work that I had put in at an elementary school, an employment centre, and a publicly run internet café (many people in the area didn’t have access to computers much less the internet) I found work (of the retail variety) relatively easily.

Katimavik gave me the skills and work history necessary to do that. My physically disabled, undiagnosed autistic self was otherwise just utterly unemployable. This is a reality for far too many disabled people.

One of the great perks of Katimavik is that if you get in, you are guaranteed work throughout the program. It’s just unfortunate that the program aggressively screens out disabled people. I almost didn’t make it in.

They successfully hid behind the fact that the houses were inaccessible as were many of the work placements. An argument that I suspect was helped by the fact that so much of the infrastructure for the program was conceived of and implemented well before the Charter of Rights and Freedoms was added to the constitution.

Will that argument still get made in 2018? When they have the chance to start from scratch?

Part of qualifying for Katimavik hinged on passing a medical inspection. You had to get a doctor to fill out a long and detailed form that was then reviewed by the program itself.

It had questions like:

Do you (the doctor) have any reason to believe this person would have difficulty participating in physical activity?

Does the patient have any disabling conditions? Please describe limitations.

Anyone who used a wheelchair was immediately screened out. My cerebral palsy threw them and they assumed that my doctor must be lying or misrepresenting my physical capabilities. So I had to answer clarifying questions like:

Can you walk? (apparently, by not expressly saying that I could, they assumed that I couldn’t)

Can you run?

Can you swim? (I can, but it seems irrelevant because the nondisabled participants weren’t asked to confirm this and at least one of my nondisabled housemates couldn’t)

These types of questions do two things. They show that people will always assume inability from disabled people if the ability isn’t clearly stated even if other questions directly asking about physical limitations are also answered in ways that indicate ability. It also forced me to confirm that “I wasn’t that kind of disabled”.

As it was, my autism diagnosis came after I had jumped through those hoops so had again had to prove that I could participate. This time by acquiring a letter from the diagnosing psychiatrist saying that I was safe to be around children. A concern that didn’t exist prediagnosis.

I went through all of those indignities and I can’t claim that I didn’t know other disabled people weren’t making the cut. I had read a news story (that I, unfortunately, can’t find anymore) about a wheelchair user who tried and failed to force the program into accepting him.

I knew, that the program excluded other disabled people. I knew that but I went anyway. I went anyway and I reaped the benefits of the experience both at work and in the relationships I created with the people I met.

I absolutely would not be who I am now if I hadn’t. I probably wouldn’t be here feeling discomfort at the benefits of being not disabled enough to exclude.

I am uncomfortable though and Katimavik is back so that discomfort matters. It matters because I know what I got out of the program. I know I wouldn’t have a Masters degree. I wouldn’t be a PhD student.

Disabled people need access to coming of age experiences. Not just the work experience. The lived experience of navigating cohabitation with too many strangers in too small of a house. The experiences of misunderstandings and fights and learning to create boundaries.

Katimavik has always been fundamentally about creating a quintessential Canadian experience and by actively excluding disabled people, it reinforces how not apart of Canada we are unless we fit a narrow standard of “able-bodied enough” and a willingness to leave other disabled people behind.

It’s 2018 and I hope the new Katimavik does better but honestly, I’m not holding my breath.

 

 

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Tainting the Poppy: Remembrance Day and Sheltered Worshops

So Remembrance Day is around the corner and for the first year of my life, I am making a conscious choice not to wear one of those poppies that are available in exchange for a donation. I don’t think I can look at those plastic poppies the same way again.

It is not that I have changed my opinion on the importance of remembering the horrors of war and keeping those losses and the ideologies that lead to them at the forefront of the social consciousness. this is not a rant against Remembrance Day or a commentary on veterans.

I just learned that in Ontario, those ubiquitous plastic poppies are sometimes assembled in sheltered workshops. These are places where disabled people work for subminimum wage, segregated from the rest of society.

I cannot in good conscious wear a symbol to honour the past, that was created by a system that systematically segregates and devalues people in the present.

Instead of wearing one of those mass produced poppies I will instead purchase a poppy brooch, that I can be assured was not manufactured in a sheltered workshop.