Statistics Canada isn’t Collecting Information on Disability During the Pandemic

Image Description: The Statistics Canada logo, a Canadian flag with the words “statistics Canada” on top and “Statistique Canada” on the bottom

Statistics Canada (Stats Can) has run three public survey since the beginning of the COVID-19 pandemic began shutting down public life in March. None of those surveys has considered the unique concerns of disabled Canadians in the survey questions themselves or even in the demographic information collected at the end of the survey. This is a serious oversight as disabled Canadians and permanent residents have been particularly hard hit by the virus. We are often higher risk of serious infection and the impact of the changes to the day to day running of public life have created additional barriers to disabled people in getting our basic needs met.

During this pandemic, disabled people have had their continued access to food threatened. We have had our continued access to ongoing care threatened. We have seen the impact of years of mismanagement of long-term care facilities create a situation where disabled people and the elderly have are disproportionately the casualties of this disease. This last becoming so bad that the Ontario government is currently dealing with a scathing report from the military who had to be called in to cover staffing shortfalls. On top of all that disabled people are facing potential medical discrimination if we should catch the virus as a result of discriminatory emergency triage protocols.

In the face of all that Canada’s national statistics agency has not seen fit to consider the needs or realities of disabled people. It is as though we do not exist at all.

It should not need to be stated that disabled people matter and that the issues and barriers we face during a national emergency deserve to be considered and studied. We already know from heart breaking stories that disabled people are suffering and being failed during this time. If disabled people must suffer these injustices we at least deserve for them to count as more than heart wrenching anecdotes that people can brush off as isolated incidents.

Disabled people deserve to have a voice as a group that has our own specific and measurable concerns and experiences during this pandemic.

Statistics Canada should be doing better. We deserve to be seen and recognized.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How to Support Me and My Work

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

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

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

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

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

March has Been a Bad Month for Disabled People

Image Description: Me, a pale blonde woman wearing a plaid dress and cream coloured sweater standing at a podium, reading names off of a list for the Disability Day of Mourning
Image Description: Me, a pale blonde woman wearing a plaid dress and cream coloured sweater standing at a podium, reading names off of a list for the Disability Day of Mourning

On Sunday March 1, I attended the Disability Day of Mourning Service which commemorates the disabled people who have been murdered by parents or caregivers. Attending this year has taken on further meaning as the world grapples with the pandemic of the novel corona virus. Much of the world is in turmoil right now and far to often disabled people are bearing the brunt of negative experiences and expectations.

The virus has gotten so bad that the entire country of Italy is in lock down. The number of people experiencing severe symptoms exceeds the Italian healthcare system’s capacity to effectively treat them all. The country has had to start implementing catastrophe triage. Essentially choosing who will have a chance to live and who will almost certainly die.

Those most at risk of death or serious symptoms are unsurprisingly disabled people, people with compromised immune systems, and the elderly. We are facing a period of human history where many people may die and that the most like casualties will be marginalized people. Catastrophe triage will not act kindly for us. If it comes to that.

Illness is not however, the only serious risk to disabled people at this time. With the instruction to move indoors and to practice social distancing. Many otherwise healthy and able people are turning to delivery services to obtain essentials, while others are participating in panic buying which limits availability of necessary items.

Disabled people often rely on delivery services and our access to them is being seriously curtailed. I am at risk for serious food insecurity for the first time in my life and it is because predominantly healthy and able people are dominating services that I and other disabled people rely on.

I managed to get a delivery window for this evening. It has already been postponed to even later. I don’t know what portion if any of my order will actually show up at my door.

During a time that is already very tense for disabled people, we have also been informed that the man responsible for the Sagamihara Massacre has been sentenced to death.

I am at a loss about how to feel about this. I oppose the death penalty personally. I am trying to decide if I can be glad that his actions were so severely condemned while being uncomfortable with the actual punishment he received.

I can only be hoped that his victims (most of whom have still not been named publicly) and their families can find some peace.

This month started off with the Disability day of Mourning which was a sharp reminder of the extreme loss we experience in the disabled community at the hands of people who are supposed to comfort and care for us. Each day of remembrance includes the reading of the names of the dead. This is an endeavor that can take nearly an hour or more.

I started this month remembering those that we have lost already only to suddenly find myself in a world where disabled and vulnerable people are out at higher risk and that our overall survival may be based on the harsh realities of catastrophe medicine. Now we are also forced to relive the horror of the 19 murders that took place in the Tsukui Yamayuri En (Tsukui Lily Garden) facility.

This has been a hard month and it isn’t even over yet.

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

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