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

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

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

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