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

Crip Camp: It is Necessary and Important

Image Description: Poster for the Netflix Documentary Crip Camp. The Title is in white in the upper left corner. In the background are  white buildings in the foreground a shirtless black man leans a guitar over his right shoulder while pushing a white young man wearing trousers and a white shirt in his wheelchair
Image Description: Poster for the Netflix Documentary Crip Camp. The Title is in white in the upper left corner. In the background are white buildings in the foreground a shirtless black man leans a guitar over his right shoulder while pushing a white young man wearing trousers and a white shirt in his wheelchair

Near the beginning of the film Crip Camp which premiered today on Netflix, a girl named Valerie sees that she is being filmed and asks “Is this necessary? Is this important?” The answer is of course, yes this was very important.

I am so grateful for this film. It is absolutely unrepentant for disabled people.

The film covers the birth of the American disability rights movement which is traced back to Camp Jened, a camp for disabled people run as the film puts it by “hippies” from the 1950s to the 1970s. The film then shows how ideas and relationships created at Camp Jened resulted in civil disobedience like the 504 sit in which paved the way for more accessibility and laid the groundwork for the ADA.


Fighting for the AdA of course took significant activism and throughout all the time that disabled people in the United States were fighting for legal improvements to better their quality of life, you will find people who met at Camp Jened and who stayed connected and who organized for change.

Throughout the film many of the voices we hear discuss how they grew into their disabled identities and learned to reject the discriminatory attitudes that they faced and also reject the internalized ableism that they had learned growing up being the only disabled people in their communities.

Image description: a poster with a black background. It has the words challenged, handicapped, handi-capable, differently abled, divers-abled, special needs in white followed by red X’s beneath in a larger font is the word Disabled followed by a red check mark.
This poster is designed by Amythest Schaber and can be ordered here

It is through finding community that these people who improved the lives of so many others were able to do so.

This is very much a film about disability and disabled people. If the title Crip Camp wasn’t enough of a hint.

It was so powerful to watch. I finished it feeling sad that I never had the opportunity to go to Camp Jened and be part of the amazing burgeoning of the disability rights movement. Unfortunately, not everyone got the point of Crip Camp.

It is always a precarious situation when nondisabled people begin sharing their understandings of disability stories. In a film where several people clearly rejected the idea of overcoming disability as toxic and damaging, reviewer, Peter Debruge concluded this as the takeaway from the film.

In the end, “Crip Camp” isn’t about disability so much as the incredible ability this community showed, overcoming physical barriers and personal discomfort in order to be taken seriously. But that doesn’t mean the movie has to be 100% serious, and LeBrecht and company recognize that a little irreverence makes the journey that much more universal.

I cannot stress enough thhat while there is a lot of joy and triumph in the film, they did not however overcome physical barriers. They demanded that those physical barriers be removed. It’s like Debruge doesn’t even know what the 504 sit in accomplished. Did he even watch the movie?

I must be acknowledged that Debruge has a history of writing badly about disability. In his review of the controversial Don’t Worry, He Won’t Get Far on Foot, he initially included this passage,

Text Reads: In the interest of full disclosure, allow me to confess: I’m a sucker for quadriplegic movies. Didn’t put it together until “Don’t Worry” really started to jive (which happens right about the moment Van Sant reveals the cause of Callahan’s injury), but there’s something about seeing real people contend with such extreme disability that gets me nearly every time. Whether they’ve been crippled since birth (a la “The Sessions”) or later in life (“The Sea Inside,” “The Theory of Everything”), their stories have a way of reminding us what really matters. Add to that the circle of support severely handicapped individuals require, and I’m in rapture, for there is nothing more beautiful in all of cinema — nothing — than genuine caregiving.

This section was swiftly criticized and summarily removed without acknowledgement that changes had been made. The review didn’t exactly improve much with the omission. It arill includes passages like this,

their stories have a way of reminding able-bodied people what they take for granted, while serving to bridge the perception of difference and discomfort that no doubt contributes to an under-representation of handicapped characters in general. In Callahan’s case, his alcoholism indirectly caused his injury, and the circle of sincere human support that gathers around him — both for overcoming his addiction and adapting to his condition — is so beautiful as to justify the controversy of its casting.

So it is certain that at the very least Peter Debruge as learned nothing. It is important to watch how important films like Crip Camp are received my nondisabled audiences. The oppressor has an infinite capacity to simply ignore the story as it is intended to be told.

John Callahan (the man profiled in Don’t Worry) never set out to inspire nondisabled people. He was more the kind of guy to tell them to Fuck, Off.

Crip Camp is a documentary about the amazing and grueling work disabled people have had to put in to be seen as human beings just as they are. Not the pseudo-humanity that is inferred by narratives of overcoming.

Crip Camp is an absolute much watch. I would also ask you to seek out opinions and reviews written by disabled people. These will help you broaden your understanding of the film and the barriers we continue to face.

Oh, did I mention, one summer at Camp Jened, there was an outbreak of crabs so the disability rights movement was born out of a bunch of horny teenagers. Which is clearly amazing.

Go watch the movie people.

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

So You Can’t Take Your Reusable Mug To Starbucks Anymore but Why is No One Talking About The Environment Though?

Image Description: A Starbucks disposable cup with a blurry cafe in the background

Starbucks, The Second Cup and Tim Hortons are temporarily discontinuing their practice of allowing customers to bring in their own reusable mugs because the practice is seen as a potential way to spread the corona virus. I have no particular issue with this change in policy but the conversation around it or more accurately the conversation that is not happening is more interesting.

This change is being presented without reference to the reason these stores promoted the option to bring reusable cups in the first place. Reusable mugs are encouraged encouraged because of the desire to cut down on the waste produced by disposable cups.

This is important to consider because it really demonstrates who is valued in the world and whose needs it is necessary to consider while creating policies that have a social impact. For years environmental activists have been waging a war against single use plastics and individually created waste. There was a lot of focus placed on individuals to make personal decisions that reduced their individual waste.

In some cases, particularly regarding single use plastics like straws, people who benefit from them were actively demonized, spoken over, or ignored. This is despite the fact that items like plastic straws are necessary for many disabled people to enable their ability to drink (and no reusable options are not good substitutes, I have already fought you, go away). Items like prepacked precut fruits and vegetables give access and improve the quality of life of many disabled people with dexterity issues (myself included).

When disabled people objected to the demonization and efforts (some successful) to ban these items, we were treated as disposable, as acceptable collateral to the fight for the environment. Yet, here we are in a situation where another environmental endeavour potentially raises the risk to the primarily nondisabled population and suddenly the environmental aspect of why that policy existed in the first place disappears. There is no outcry that the risk of viral spread is an acceptable risk in the fight to save the environment.

Again, I am entirely fine with this change in policy. It is the appropriate response to lower the risk of viral spread. It is however telling that the same consideration is not given when the population at risk of harm is disabled people.

And to be clear rhetoric around the spread and risk of the corona virus is already seriously devaluing disabled people. The risk of a fatal infection of the virus is highest in people who have compromised immune systems. So the risk is greatest for disabled people and the elderly.

Many people are already minimizing the threat of the virus simply because they are not the people at greatest risk. They are treating those that are as inconsequential. This indicates just how othered disabled people are. We are not the people who will be mourned if we are casualties to this virus.

That is why it is so important that the change in policy in major coffee franchises hasn’t included the environmental angle in discussion. It shows very clearly whose needs must be considered when making concessions in discussions of “the greater good” and whose needs can be ignored regardless of the consequences.

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

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

Disabled Children Deserve Privacy

I have always been deeply grateful that I grew up before social media was a thing. I am glad that there are no videos of me for “educational” purposes. I am particularly happy that there are no videos of my trauma going around and had I been born two decades after I actually was there probably would be.

There is again a video of a disabled child making the rounds of the internet and the impact has been utterly horrific. I am not going to name this child or link to any of the coverage because the fact that all of this exists right now is already horrific enough. That this stuff will still be on the internet, very much attached to his name is unconscionable.

It is bad enough that his mother made the well intentioned but disastrous decision to both film and then publish a video of her nine year old child expressing suicidal ideation as a result of the bullying he experienced as a result of his disability and racism. She was hoping to raise awareness of the impact of ableist racist bullying. That video has now been viewed millions of times and been shared by countless people.

None of the reactions have shown that people understood what happened or the work to undo deeply ingrained cultural prejudice that needs to happen in order to actually change the reality of growing up disabled. The first response was simply pity. Pity that was mixed with shock and horror but pity nonetheless.

What followed were misguided attempts to cheer up this child. There was a fundraiser to send him to Disneyland. I’m not saying he wouldn’t enjoy the outing, he very well may. I however, do know as someone who was virulently bullied that a fun holiday would not erase the harm of the abuse I experienced. It would also not stop it from happening. Disabled people don’t need trips to Disneyland. We need systemic change that stops abuse from happening to us and resources to help deal with the abuse that has already occurred.

Unfortunately because pity is rarely a productive response to bigotry for many it soon turned into suspicion. This appears to be because people learned that the child’s family is not poor. Suddenly, this money raised for a holiday without their input is seen as something they do not deserve. Many people began complaining that it had been raised in the first place.

From there some people began to believe that this boy, who had been bullied to the point of wanting to die was not actually a child at all. The decided that he was an adult putting on an act.

I can confirm he is in fact a nine year old child.

People used prejudice about the way disabled people, particularly racialized disabled people look to ultimately label the entire situation a sham.

All of this is speeding around the internet internationally with persistent virality and all of it is tied to a traumatized child by name. In addition to the trauma that led to his thoughts of self-harm. He now has to deal with the fact that many people believe that he is lying.

The publication of his expression of serious trauma did not as was intended “raise awareness”. Rather it is currently compounding the harm he has already experienced. It is impossible to predict how long this will be used as a tool to dehumanize this child in the short term. Much less the impact it might have as he grows up and begins applying for university or entering the work force.

In the age of the modern internet, it will be far to easy to not only tie him permanently not only to this video showing extreme trauma which would be bad enough but also to the fallout that ensued.

The world was shown a deeply traumatized child and reacted first with pity and then with vindictive suspicion.

The way people responded is not really that surprising even as it fills me with rage. People have been sharing these kinds of videos for years and while they frequently go viral. There is no real corresponding social change. Not even in the area of “awareness”. No child deserves to have the world be this aware of them.

Yet, all I can now do is sit here and hope that as a result of the hateful fallout of this latest video shared in the name of “awareness” that the parents of disabled children will be more reticent in what they share about their children with the public.

Please, please never gamble your child’s well being for “awareness”. Please put the responsibility of creating change and learning on those who are ignorant of disability not disabled people trying to survive that ignorance.

Disabled children deserve privacy. That lesson should not need to come at the cost that this child is paying.

How to Support My Work

So now for the very in-depth appeal for support for my PhD. Please read through this, there are so many ways to help, including just sharing this blog post on social media.

If you want to help me buy books and other resources for my PhD, you can buy me an amazon gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

Become a Patron!

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites) use the answer “scholar” for etransfers

The Peanut Butter Falcon and Doing Disability Differently in Film

Image Description. Poster for the Peanut Butter Falcon. The three stars Tyler (Shia LaBoeuf), Zak (Zack Gottsagen), and Eleanor (Dakota Johnson) are on a wooden raft while Zak poses with a gun on a river with the movie's title at the bottom.
Image Description. Poster for the Peanut Butter Falcon. The three stars Tyler (Shia LaBeouf), Zak (Zack Gottsagen), and Eleanor (Dakota Johnson) are on a wooden raft while Zak poses with a gun on a river with the movie’s title at the bottom.

The Peanut Butter Falcon is a beautiful artistically shot film that manages to humanize Zak, its main character who has down syndrome in a way most films with disabled characters.

Far to often disabled characters are plot devises who serve as objects of inspiration or pity and fail to show the audience a realistic and humanized portrayal of the disability experience. Peanut Butter Falcon on the other hand manages to portray Zak as a well rounded character with agency within a plot that at times depends on a degree of unreality. This is definitely a film that stands apart in its ability to portray depth and truth through a story that is at times dreamlike.

The story follows Zak who has been living in a retirement home as the only nonelderly resident. He resents not only his inappropriate living environment but also the fact that he is denied the chance to pursue his dream of becoming a professional wrestler. He escapes the retirement home and teams up with Tyler, a small time criminal on the run, to get to a wrestling training academy.

The retirement home sends idealistic care aide Eleanor to retrieve Zak and the three embark on an adventure.

The film has a set up that could so easily have fallen into old and harmful tropes. Yet it subverts all those stereotypes while maintaining a light and positive tone.

The film starts out strong by not sacrificing the humanity of the senior citizens who also inhabit the retirement home with Zak. They are his frequent co-conspirators in his escape attempts. They understand that he doesn’t belong there as much as he does.

The movie also deals beautifully with the reality that a person can discriminate and do harm to disabled people without intending to and that good intentions can still reinforce and be dehumanizing. Eleanor starts out aware of the unfairness of Zak’s life in the retirement home and sees herself in opposition to the system that forces him to be there but she doesn’t start to see how her own treatment of Zak is condescending and dehumanizing until after he escapes and refuses to return with her.

The movie has no simple answers for complex issues. There are moments of triumph and disappointment. This is a story that very much leaves you with the knowledge that the characters still have to live their lives after the final credits roll. Everything isn’t wrapped up in a nice bow.

One of my favourite aspects of the film is what many describe as a “modern Mark Twain adventure” (Even the characters in the film). The story manages to evoke the tone of a tall tale well told while still keeping the realness of the characters intact.

When I criticize bad portrayals of disability, I am often accused of wanting some kind of unobtainable perfection in representation. I, however, just want good stories told well. The Peanut Butter Falcon achieves this in spades. Star Zach Gottsagen gives a stellar performance and has amazing chemistry with his costars. The film manages to avoid all to common disability tropes easily without it feeling like you are being beaten over the head with a moral lesson.

All you have to do is want to tell a better and bigger story.

I hope that more stories about disabled characters will be given this kind of depth and respect in the future.

I highly recommend the film.

Here is the trailer.

How to Support My Work

So now for the very in-depth appeal for support for my PhD. Please read through this, there are so many ways to help, including just sharing this blog post on social media.

If you want to help me buy books and other resources for my PhD, you can buy me an amazon gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

I will not be answering queries about my research through this email. It is solely a way for people who want to support my work to be able to do so. (this is a safety boundary). If you want to talk to me, find me on Twitter.

My research and supporting myself will get past the reading phase and there will be field work in my future. If you would like to help me fund my PhD in the long term you can

support me on patreon

Become a Patron!

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites) use the answer “scholar” for etransfers