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

I Stand With Wet’suwet’en: Don’t Use Disabled People to Shame Protesters

Disabled people can be a very convenient scapegoat to either be the victim or the villain in just about any social issue. When it comes the environmental causes we have certainly been both.

In the often misguided war on single use plastic we are both the villains for needing many single use plastic products. We are also largely ignored as bans on things like plastic straws gain momentum. The latest battle is one where we are being used as convenient victims to shame the growing national protests in support of the Wet’suwet’en hereditary chiefs against the encroachment of a nationalized pipeline going through an unapproved route through their territory.

This issue is also so much bigger than the environment as it is also primarily an issue of Canadian colonialism and racism against Indigenous people. Yet, a British Columbia disability org, Disability Alliance BC wants to reframe an issue about land sovereignty and reconciliation as an issue of accessibility. This is a viewpoint that at least one news outlet seems happy to parrot.

It places the presumed access needs of disabled Canadians over the rights of Canadians to protest and over the rights of Indigenous Canadians.

I am appalled by the colonialism being practiced in my name and I want to express in the strongest terms that Disability Alliance BC does not speak for me.

I condemn completely the very idea a weaponizing disabled people in service to colonialism and placing our comfort and convenience against the rights of Indigenous people. Because, let’s be clear this isn’t an argument about conflicting rights. This is largely an argument against inconvenience. The same kind of inconvenience that everyone is intended to experience as a result of these kinds of protests.

Disability Alliance BC could be spending its time trying to mitigate the inconvenience to disabled people who lives might be disrupted by the current wave of protests. They have by no means shut down all travel in the country. They have instead chosen to shame protesters who want to support reconciliation and the Wet’suwet’en protests, rather than look for available solutions and place the blame where it really belongs. On the doorstep of a colonial government that both seeks to further entrench Canada in colonial violence and which on an every day basis fails to invest in accessibility for disabled Canadians. If Canada cared about accessibility disabled people wouldn’t be able to be used as a stick with which to bludgeon protesters because we would already have options to deal with unexpected travel delays.

If disability and access must come up in this conversation let it be one of criticism of how we still don’t have those options and how that is a structural wrong that should not be placed at the feet of protesters. Let the conversation also highlight the additional barriers Indigenous disabled people face as a result of colonialism.

Do not, however, legitimize the idea that protesters are wronging disabled people. Society already did that. I know I am not the only disabled person who does not want to be used as a tool to deny justice to others. My humanity should not and demonstrably in this case does not come at the cost of the humanity and rights of others.

I stand with Wet’suwet’en

I condemn the rhetoric of division that puts my rights and comfort above the rights of others. Particularly when their rights are being actively attacked by the government. When they face direct intimidation and violence from the RCMP.

I stand with Wet’sewet’en not with Disability Alliance BC

The Emperor Wore Jorts: An Autopsy of the CUPE 3903 2018 Strike from the Perspective of a Disabled Union Member

Image description: Geese blocking traffic as though they are a picket line
Image description: Geese blocking traffic as though they are a picket line

The CUPE 3903 York University strike is not a topic on which I am an expert. I was an active local member throughout the strike that lasted from March 5- July 25 2018. It was a surreal experience not least of all because no one expected the strike to go on that long and yet the fact that we hold the record for longest post-secondary strike in Canada happened with almost no external notice. I myself was in Ireland attending a Summer Law Institute the day we broke the record. My return to Canada in late June was a return to the picket line that I had left.

Image description: Me in Ireland My hair is also on vacation and is trying to get to know my glasses better by being shoved forward in a blond triangle
Image description: Me in Ireland My hair is also on vacation and is trying to get to know my glasses better by being shoved forward in a blond triangle

This is not going to be an in depth autopsy of the strike but rather the recollections of a single member who was keen to actively participate but who like many rank and file members of the local were isolated from those making decisions which often led to a distorted understanding of what was going on at any given time. Even in hindsight, I can’t put all of the pieces together on how we could achieve a moment in Canadian history (that admittedly no one but us cares about) considering all of the incompetence that has been revealed since the strike ended. I can’t help but believe that the local executive’s incompetence and  unwillingness to reconsider tactics is precisely why the strike dragged on as long as it did while we union members have few if any gains to show for our months of picketing.

From an individual standpoint, the strike is best understood through the rumours that ran through the picket lines and how we all got hyped up on small political wins we didn’t really understand. There is no single individual who can be blamed for the disastrous outcome of the 2018 CUPE 3903 York University Strike. I think it can be said however, that our local chairperson was the emperor with no clothes and yet he was treated as though he was draped in Armani (he has since been accused of sexual misconduct. Both the local and CUPE National are subject to HRTO complaints).

I showed up to picket on the first Monday of the strike. That first week I lasted three days before my body rebelled. Three days a week of picketing was the maximum my body could handle. I was already trying with little success to get what were called 8th line accommodations (there were 7 physical picket lines on campus). The union local equity officer didn’t think my doctors note was specific enough. After a strongly worded response explaining how medical notes are secret codes that mean more than what they say, my accommodations were approved.

I was sent a nonsensical quiz to see what 8th line work I’d be interested in. Nothing made it clear what kind of work you would be doing. My first job assignment that I turned town in a genuine panic was a managerial position. I can’t even remember for what anymore. I just knew I should not be overseeing people in such a chaotic situation.

At the time I just thought it was just people getting their bearings at the beginning of the strike but things never improved. Weird things started happening like a member of the local executive unilaterally decided to hire the graduate/faculty café to provide food for the strikers at an astonishing cost of about $10,000/week. The food was frequently inedible.

Image description: My smiling wearing a blue hat ,sweater and sunglasses/ I'm smiling while cuddling a husky. Strike dogs made the strike more bearable
Image description: My smiling wearing a blue hat ,sweater and sunglasses/ I’m smiling while cuddling a husky. Strike dogs made the strike more bearable

This wasn’t a day one decision. For a while the Sikh Temple provided our meals. It was a lovely arrangement of solidarity. It is also understandable that they could not reasonably be expected to keep feeding us for five months. The $10,000/week alternative was definitely bad though.

As for my 8th line accommodation, I briefly ran the CUPE 3903 Strike blog. An endeavor I created myself because of my discomfort with the way the communications team seemed to have no policies for content or quality control. They asked people to use their own social media accounts. There was no cohesive message. Embarrassing gaffes were made. At least with my little strike blog, I could keep things to union releases only and feel relatively confident that I wasn’t accidentally undermining the strike.

I was a passionate union member. For the first half of the strike I don’t think I forfeited a single picketing hour. Eventually the hits start getting to you or the wins turn out not to be the wind you thought they were.

We had the misfortune of going on strike during a provincial election. This fact alone is a big reason the strike lasted as long as it did. Initially the outgoing premier said she would not be legislating us back to work but as the election loomed large, one of her last acts in provincial parliament was to try to legislate us back so that we would not be on strike throughout the campaign season. Through a technicality I don’t understand where the New Democrats blocked the move, we were not legislated back to work. However, due to both the union’s and employers bargaining styles (employer says no, union has no actual functional strategy, just my personal theory) the fact that the strike would last through the election was almost assured.

Image Description: My epic strike fashion of a hat, sunglasses, plaid shirt and khaki pants and for some reason Christmas themed painted nails
Image Description: My epic strike fashion of a hat, sunglasses, plaid shirt and khaki pants and for some reason Christmas themed painted nails

In Ontario, the employer can bypass membership once to force a vote on a contract. We called it the Rat Vote and we defeated it handily. Both the Rat and Wynn failing to legislate us back felt like wins at the time. It felt like we were truly denouncing the employers offensive offer but these things really just delayed the end of the strike further. The longevity of the strike created cracks within the membership that had been simmering. Conspiracy theories flew fast and furious. Actual conversations were had round what kind of Marxists the various cliques were and if they were the “evil” kind of Marxists (there may have been rumours of a Maoist cult).

The labour movement might be based on Marxist ideals but I’m pretty sure you can plan and execute a strike without even knowing that there is more than one school of Marxism. The real issue of the longevity of the strike is that from a bargaining standpoint we were stuck and from a financial standpoint we were broke (that whole $10,000/week for good thing was a really bad idea). The union had made a number of financial missteps but the election wasn’t over so neither was the strike.

The strike dragging on this long had pretty obvious consequences. We lost a lot of the early vocal support and strike fatigue made it hard to get people to even show up to the picket lines. The decision was made to consolidate the existing seven picketing locations to two. One of the immediate results of that was the unintentional culling of several more local members from regular picketing because they couldn’t navigate the new social dynamics created by picketing with different people after months and for half those people doing it in a different place.

Picketing locations had originally been organized by academic program, so all the critical disability studies students (many of whom are disabled) who did not do permanent 8th line work had spent the first portion of the strike with the same people who had adapted our picketing strategy and space around accessibility. While we were lucky to bring our merry band of chaotic accessibility with us, not everyone at the new location was as committed to making sure the disabled members of the local got to participate in picketing.

One of the earliest accommodations for disabled picketers who were actually walking the line was the provision of chairs. Each picket line was provided with chairs but they were largely an accommodation for disabled members. I got in a confrontation about my right to sit down with a man who had been monopolizing a chair. He questioned my disability status. He questioned the disability status of the other people sitting in chairs (can confirm I knew them all to be disabled). He, ultimately, let me have the chair but he felt he had been wronged. He was eventually asked to leave the picketing area for making a scene. He returned the next day and tried to get public support for the “harm I did him” I really don’t know. It escalated onto one of the union listservs (not one I had access to).

It was decided that this incident needed to be brought to the membership at an SGMM (special general membership meeting, they happen weekly during strikes). That week’s SGMM was to be held at OISE (Ontario Institute for Studies in Education) at the U of T. I had designated a friend to speak on my behalf because, I no longer felt safe on the picket line. We sat through the usual SGMM filler, we went through the minutes. I can’t remember what exactly made the SGMM drag on (there was always something dragging those out) but just as it was about time for my friend to advocate on my behalf, several disgruntled members of the local’s unit 2 (contract faculty) decided to start a shoving match of the hallway at OISE at the University of Toronto. The local Chair had to immediately end the session to try and put a stop to the drama in hallway.

I ended up needing to be escorted to the subway by a friend.

My presence on the picket line was spotty after that. We tried again to bring up ableism on the picket line at the next SGMM but by then the hallway fight from the previous week had changed the tone of the meeting and it didn’t feel like anything was accomplished. I never really felt comfortable on the picket line going forward. I’d show up more to visit with friends I knew would be there than out of real fervor for the cause.

The strike was finally ended on July 25, 2018 by Doug Ford’s conservative government. The union is fighting the constitutionality of that back to work legislation. If they win, I hope they have a better strategy for the next time they are sitting across the table from our employer.

How to Support My Work

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

Kindle ebooks read on my iPad are the easiest way for me to read and take notes unfortunately Amazon does not allow people to buy ebooks for others through their wishlist system. I have an amazon wishlist anyway as some of the books can only be purchased in print or from third party sellers because they are out of print. If you could buy me one of the books that can only be had in print, I would greatly appreciate it. If you want to help fund the ebooks I’ll need you can buy me a gift card and send it to the following email address

The email is kimberleyjanephd@gmail.com

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

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

support me on patreon

Become a Patron!

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites)

I also have a generic disability wish list of things that would just improve my quality of life

Thank you for your ongoing support. and just an FYI I’m changing my name socially to Kimberley Jane Erin. You can call me Kim or Jane but I prefer Jane. I am however, not the least uncomfortable with Kim so don’t worry about messing up.

It’s time I really leaned into my identity as a scholar. I hope you’ll support me

A Long Overdue Update

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

Hi Everyone,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I was extremely compliant on the psych ward.

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

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

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

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

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

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

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

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

Until then I hope you will support me in my goal of completing my dissertation in any way that you are able. Whether it be through emotional support or by financially investing in my academic success.

My dissertation is tentatively titled “We Still Hide Madwomen in the Attic”

It will be an autoethnographic (meaning I will be using myself as a research subject) study of how mad/disabled women have been and still are silenced and isolated both directly through things like abuse and involuntary committal to the cultural idea that mad women in attics are just a literary device for gothic novels.

In the immediate, I need to complete my comprehensive exams which necessitates a lot of reading. Some of the books are out of print and hard to find. I have created am amazon wishlist (it’s not exhaustive and will likely be added to). If you could support my work by purchasing one of the books on that list that cannot be had in kindle format, I would really appreciate it.

Kindle books read on an iPad are really the most accessible format for me but Amazon does not allow for the purchase of ebooks through wishlists. So I have set up an email solely for people who want to financially support my work. I would greatly appreciate gifts of amazon gift cards (I’ll even tell you which books you bought me)

The email is kimberleyjanephd@gmail.com

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

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

support me on patreon

buy me a ko-fi

send me money via paypal

send an e money transfer to the email above (if you have scruples about third party sites)

I also have a generic disability wish list of things that would just improve my quality of life

Thank you for your ongoing support. and just an FYI I’m changing my name socially to Kimberley Jane Erin. You can call me Kim or Jane but I prefer Jane. I am however, not the least uncomfortable with Kim so don’t worry about messing up.

It’s time I really leaned into my identity as a scholar. I hope you’ll support me.

Why Everyone Thinks that They Care About Disability Rights When They Really Don’t

On Thursday, Rachel Maddow asked “Who campaigns on gutting the American’s with Disabilities Act?” in a segment that included no interviews with disabled people.

She asks the question and seems to understand that the answer is “no, one” but she fails to ask or investigate why no one would ever openly say

“Send me to Washington, I’m going to stick it to disabled people. Send me to Washington and when I take my votes, you’ll see blind people, and people in wheelchairs being hauled out of the gallery in the house and arrested because I’m taking away the most important parts of the most important legislation that has integrated disabled people into mainstream life and American public accommodation”

or have an

“I’m a wheelchair user’s worst enemy caucus”

but still, vote in favour of legislation that will invariably harm disabled people.

Because, to be clear, this question isn’t just about the HR 620 vote that Maddow is addressing in that segment. That’s just the latest example of the say one thing but do the opposite phenomenon that is an all too common aspect of disability-specific legislation and policy in the United Staes and beyond.

This phenomenon was also front and centre in every attempt to repeal the Affordable Care Act.

It is present in the continuing controversy about austerity measures and benefits cuts in the United Kingdom.

It can be found in the fact that Toronto’s Transit Commission is unlikely to meet the goal of making all subway stations accessible by 2025 as the Access for Ontarians with Disabilities Act (AODA) requires.

This is a really common thing. You ask a random sampling of nondisabled people if they support more rights and opportunities for disabled people and the majority if not all will emphatically respond with a “yes”

If you ask them to follow through with the actions needed to make that ideology a practical reality, suddenly they’re either no longer available or they start making excuses.

There are a number of factors at work here, to create this paradoxical reality where disability rights are being clawed back or are under threat and yet most people when asked will passionately claim that they love disabled people and want them to thrive. It would take more space than I’m sure you have attention for to go through all of it (it could fill several books) but I’ll try and go through a few of issues at play. It all boils down to a single idea though.

The bar for what constitutes solidarity for disabled people is so low that simply not actively hating us is considered a radical act. Put another way, people have convinced themselves that simply reacting with the appropriate emotion is considered an act of resistance. As opposed to actually acting to resist systems that oppress disabled people.

Some of this is culturally constructed. One of the big reasons people can say one thing but let the opposite thing happen is because of how we understand poverty.

Western cultures all generally have some kind of understanding that there are portions of the population that are going to require assistance. They may differ on how they think those people should be helped. Should the government be in charge? Should it be nonprofits? Should we leave it to religious institutions?

Ultimately, who’s in charge is irrelevant because inevitably people are fine with the amorphous idea that people who are poor, sick, disabled, or elderly need and deserve assistance. Problems show up as soon as people start to act on those ideas and the need is too great for the resources available. Instead of looking for more resources, people start debating about “who really deserves to be helped”.

That’s where narratives of the lazy poor or benefits cheats come from. Not because those are widespread phenomena but because doubt is useful to people who either don’t know how to help or feel that too much is being asked of them. So they come up with excuses about why the person who needs help isn’t really deserving after all.

Disabled people have long found themselves firmly in the category of people deemed worthy of assistance but they often don’t get it. Consider the “ugly laws”, a set of policies and bylaws often incorrectly assumed to ban disabled people from public spaces outright. They were, in fact, more accurately anti-vagrancy laws. They were often premised on the idea that disabled people were justified in begging. The problem was they were convinced that people were faking disabilities to unfairly gain sympathy.

While that undoubtedly did happen it likely wasn’t as widespread as people thought. The suggestion that, that beggar might be faking his war wound was enough doubt to allow people to not only feel justified but righteous in not giving the poor money. “The ugly law” also allowed for people who were begging to be removed from the streets. Often specifically under the guise of removing the “riff-raff” so that the truly deserving poor would not be disadvantaged.

That dichotomy of the deserving and undeserving poor allows for people to maintain the idea that they want to help poor and disadvantaged people (the deserving poor) while putting up ever more restrictive barriers to getting access to that assistance (the actual poor…excuse me the “deserving” poor).

A lot of social services are delivered with expansive mission statements that do not seem to match the output of those services.

Disabled people, in general, have theoretically maintained “deserving” status throughout the history of social services in the last few centuries. Yet we remain underserved.

The rhetoric never seems to match the output.

Consider how British Prime Minister Theresa May talks about Personal Independence Payments (AKA PIP a financial benefit for disabled people in Britain) in the midst of real concerns over the impact of cuts. These statements were made in the context of there being clear identifiable harms happening as a direct result of government policy.

“If you look at what we’ve been doing on disability benefits, what we have done is look at focusing disability benefit payments on those who are most in need. In fact, we are spending more on disability benefit payments than has been done by any government in the past,” she replied.” (emphasis mine)…

“We have changed the way that disability benefits have been paid and I know there are some issues that people continue to raise about assessments that are made on those payments. But we will continue to be moving to a system that ensures we are supporting those most in need.” (emphasis mine)

In the face of cuts, the official line is still “the people who need it are getting help” the implication is thought that the people who saw their payments cut or lost benefits altogether are no longer in need. So, if they complain they are lazy scroungers.

It doesn’t matter that the restructuring of benefits did not come as a result, a large scale movement of disabled people into work. People were not becoming spontaneously cured. Their needs didn’t change. The only difference is how the government defined them.

People also can’t seem to remember that disabled people deserve access to public spaces the second money comes up. It’s always too expensive to make things accessible. That’s the basic crux of HR 620, the legislation seeking to gut the ADA.

It’s just really unfair that people have to actually make an effort to make their businesses accessible. It’s a step too far. Can’t we all feel really good that the ADA exists? Do we really have to follow it through? Can’t we just bask in the glow of the intentions behind it?

Though as the Toronto Transit example points out even keeping accessibility legislation as is won’t stop people from not following through with its requirements if they can claim it’s too expensive.

I wonder sometimes how much it costs to build steps. To pour the concrete for that one step into a building. How much do stairs cost to go between floors? How much does building the accessibility of nondisabled people cost? Is it more than a ramp? Is it more than the lowered sink and tilted mirror in the bathroom? Did the other sinks and mirrors cost so much more? or is it just that the things that accommodate disabled people in those spaces are always seen as extra?

Disabled people are a cultural paradox. We are both widely considered deserving of rights and dignity but if we are denied them, little is done and excuses are made.

The fact that disabled people are now more likely to demand meaningful inclusion and not simply settle for the subsistence of charity has also challenged the historically paternalistic view of disabled people.

They are supposed to save us. Often from the ravages of our own bodies and minds. We are not supposed to say that we really need saving from exclusion and systems that keep us in poverty.

Unfortunately, people still look to charity as not only the best way to assist disabled. On this front charities are fundamentally failing the people they claim to want to help. Awareness is big business but the bar is unfortunately not set at meaningful understanding of the cultural and economic status of disabled people. They instead far too often ask only for sentiments. In short, they ask for nondisabled people to affirm that they do not hate us.

From the Cerebral Palsy Foundation’s functionally meaningless “Just Say Hi” campaign which basically asks that people prove that they are not afraid of disabled people by saying “hi” to them.

It doesn’t interrogate why people are uncomfortable around disabled people. It doesn’t question whether disabled people want to be said “hi” too just because they’re disabled. It doesn’t consider how this campaign contributes to a toxic culture of voyeurism that strips disabled people of privacy.

Easterseals has recently rolled out its Celebrate, Don’t Separate campaign which is supposedly about changing the way people see disability. The campaign is filled with the voices of disabled people explaining how they want to be seen.

What action then does Easterseals recommend people do?

Do they want you to call your government representatives and demand action on inclusion in the workforce or in education?

No

Do they want you to consider ways that you can make your home/workplace/school more accessible?

No

Do they want you to donate money to create a fund to invest in accessible infrastructure?

No

They want you to take a photo of you hooking your index finger with someone else’s and posting on social media.

I can’t think of a more empty gesture.

We already know that people find it all too easy to express warm and fuzzy sentiments about disabled people. It’s the work of making those sentiments a practical reality that they can’t seem to grasp.

Empty gestures that lack meaningful action only reinforce the idea that conjuring up the right emotion is a radical act. It lets people think that they are either helping or at least not contributing to the problem as long as they can call up a warm and fuzzy feeling at the general concept of inclusion without having to create it. The fact that we don’t live in a world that can live up to the intentions of existing policies and legislation is largely irrelevant.

Hell, we live in a world where those intentions are held up as evidence of success even as they clearly haven’t been lived up too or are being actively undermined.

Any campaign built on recruiting sentiment instead of action needs to be abandoned.

If you claim to care about disabled people and our rights, be prepared to act in defence of them.

Here are some things that you can actually do.

Call politicians about bad disability-related legislation.

Attend protests in support of disability issues. Don’t just gasp and clutch your pearls when ADAPT activists are being arrested and dragged out of their wheelchairs. If they get arrested, you should step into the protest in their place.

Donate to charities and organizations that are run by and for disabled people

Support disabled content creators. Put money in the hands of disabled people.

Do not hide behind a generic feeling of fellowship and good intentions. Make sure those intentions are matched by measurable outcomes.

 

 

How to support my work

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