Sarah Kurchak’s “I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder” is the Memoir Everyone Should Read Right Now

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.

Thank goodness for whoever decided to release the memoir I overcame my Autism and all I got was this Lousy Anxiety Disorder by Sarah Kurchak early on April 2nd. I immediately downloaded the ebook, though hardcopies are also theoretically also currently available in Canada but shipping delays might keep you from getting it until May (because global pandemic). Americans who want a hard copy will have to wait for September 22 international publication date (hopefully no more pandemic).

Sarah’s memoir is written in the form of connected essays in the form of a “How To Succeed” while directly challenging the idea that she actually knows how to do that. The book is an important challenge to the concept of “overcoming autism” and is a necessary example of the consequences of giving in to the pressures of trying to perform “normalcy” in an attempt to fit in.

More narratives by autistic people are something the world really needs. If only to break the monotony and statistical inaccuracy of the stories (far to frequently fictional and inaccurate) of straight white autistic men. Author Sarah Kurchak tries to challenge the unreality of what the wider world thinks about autistic people (and I can only hope she succeeds in chipping away at that bullshit). One of the most important themes that she discusses in her memoir is the issue of being believed and how often autistic people are challenged on both their autisticness and the validity of their opinions and experiences in relation to relevance to the broader autistic community.

As she points out one of the biggest Autism charities which has a dearth of autistic people in influential roles is called Autism Speaks (an organization that is widely unpopular with actual autistic people).

As Sarah explains in the introduction about a neurotypical response to her as yet unpublished teen sex comedy (which I desperately hope becomes a real book someday soon) that it was “REAL and raw”

For as long as autistic narratives are dominated and controlled by others, these are the concerns that will fester in the pit of my stomach and the back of my brain every time I sit down at my laptop, start to rock from side to side, and write.I have no interest in being told that my writing is real. I need my work to tell you that I am.

This is but one of the first of many poignant quotes mixed with wry and often comical anecdotes while also dealing with serious and heart wrenchingexperiences. This book is not about “what it is like to be autistic” no matter how frequently I reacted with “yep, me too”. It is a challenge to that monolith. It is about Sarah as an individual among individuals who may share common struggles experienced in an unending variety of of ways in a world really not designed for us.

This book is unrecognizable within the genre of autism narratives and that is one of my favourite things about it. I genuinely hope to see more books not like it but which also challenge the far to prevalent monolithic view of autistic people but as individuals whose stories matter outside the niche genre of autistic narratives.

The book is funny, sad, and serious and I highly recommend it as a really good read to absolutely everyone.

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir is available in ebook and paperback in Canada from Indigo and Amazon

It is available in ebook form in the United States from Amazon and will be available in paperback on September 22.

We’re all stuck inside anyway so why not read a really good book.

How to Support Me and My Work

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

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

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

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

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How to Support Me and My Work

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

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

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

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

You can support me on Patreon

Become a Patron!

You can buy me a coffee

Buy Me a Coffee at ko-fi.com

Or send me money directly through Paypal

paypal.me/crippledscholar

Rereading my Childhood for my Dissertation: Mine for Keeps

Image description: Book cover for Mine For Keeps by Jean Little. A girl sits among foliage wearing a white hat and a pink coat. She is cradling a little white dog and and underarm crutch can be partially seen next to her. (Source)

This post contains spoilers.

As part of my requirements for my PhD I’m doing a book audit of books from my childhood that were meaningful in some way. Some of those books were books assigned in classes in schools (yes, I will be rereading To Kill a Mockingbird for the first time since high school, I will also be reading Go Set A Watchmen). It is hard even in hindsight to determine exactly what some of these books meant to me but they are the ones whose titles I could never forget or that I reread over and over or found again at key moments in my life.

The book audit assignment is not going to allow me the space to really consider these books in detail. I will not be writing essays but rather explaining why the book is significant in the context of my dissertation (for more info click here). I have thus far only read one book, so I don’t know if I will dissect each of them here on the blog. I don’t yet know what emotions are going to come up or if I feel comfortable speaking at length about a particular book without further research.

Without further ado, the first installment in a potential series

Mine For Keeps (1962) by Jean Little

Summary

Sarah Jane (Sally) Copeland has cerebral palsy and has spent most of her school years in an institution for “handicapped” (it was the sixties y’all) children. A new rehabilitation centre is opening up close to her family and Sally is moving home permanently for the first time since she was a small child. She will be attending the same school as her siblings. Sally is scared but excited.

This was my third read through of this book. Both previous reads were done before I turned 18. All I can say at 32 upon rereading it is to say. Wow, I was really starved for representation if I treasured the memory of this book.

It is important to point out that Jean Little is both Canadian (yay CanLit) and is partially blind (vintage CripLit). She has written several children’s books on the topic of disability.

Mine for Keeps, offers an odd combination of realistic portrayal of disability and those smarmy morality tales that were popular in children’s fiction at the time. At times you have the impression that you have left suburban 60s Canada and fallen into a Dick and Jane school reader.

It is almost as though the author didn’t know how to balance realism with the morality that is inevitably expected in children’s books with disabled characters. Sally doesn’t just have to deal with going to a mainstream school that has ill considered her needs and balancing family life as a long-term resident and not just the summer and Christmas guest. Sally has to save the self esteem of an unpopular Dutch immigrant boy named Piet to make his sister happy.

Rereading this book as an adult, I cringe more that I identify with the book. Sometimes I cringe because I do identify with the book but not the book’s message.

To her credit Jean little does try to subvert the supercrip narrative that the book sets up. Piet is depressed because not long after arriving in Canada he contracted rheumatic fever and was sick for months. Though now out of bed Piet’s activities are still restricted by his health. His English isn’t as good as his sister Elsje’s and he is unpopular with the boys his age because his inability to participate makes him appear standoffish.

Before he was ill Piet trained animals and even has a very well trained dachshund named Willem. Despite being somewhat recovered Piet refuses to take back responsibility for Willem from his sister believing himself to crippled (though he said it in Dutch).

Elsje decides that if Sally can train her own puppy Susie, it will prove to Piet that he is still capable. Ultimately, Sally just ends up putting Piet on the spot in public forcing him to either display his dog training skill or be embarrassed.

The book is really longer than it needs to be and this seems to be to try to give Sally some semblance of agency in the story but in the end she is really just a pawn in her friend’s ill conceived bid to save her brother from being a moody teenage boy.

The book tries to justify this by giving Sally an odd anonymous obsession with Piet (they don’t even meet until well past halfway through the book) because her brother makes an offhand comment about no one liking Piet but that his sister was in Sally’s class.

Piet is otherwise an absent figure. He appears in two scenes in the entire book. Everything else is Sally being told private family business the teller should definitely be keeping to themselves or eavesdropping on other children complaining about Piet. From this alone Sally creates an ever-changing fantasy Piet that she is platonically obsessed with, for no conceivable reason.

While it is not written with that intent it very much reads like Sally is pursuing training Susie at least to the degree and zeal that she does in the book in order to keep a friend (who can be moody) happy.

There are no real stakes. Sally is able to convince Piet to go back to looking after Willem by pressuring him in front of an audience. The actual time spent training Susie up until this point is just a couple of weeks. Though of course as is the way with such books the children all intend to carry on training their pets. Sally with her friends and Piet with two new friends conveniently with dogs that just happen to be present for Piet’s moment of personal growth. This is a very important literary tool called “for plot convenience”.

Sally uses peer pressure rather than her disabled body to “save Piet”. It really feels like this book is missing basic things like character development and more information on Sally Copeland’s social reality. Perhaps it is just as an adult, that I see not just the gaping plot holes with ill-fitting morality messages stretched on top. The task of “saving Piet” much less meeting Piet is a MacGuffin. Oddly, in this book, a one-dimensional petulant Dutch immigrant who serves as the catalyst that inspires or forces (depending on how you interpret Elsje’s peer pressure) that inspires the disabled person not to mope around being depressed about their life.

The xenophobia over the immigrants in the story is painfully apparent, primarily because the book is trying to horn in the additional message that xenophobia is bad but none of the Dutch characters are likeable. Piet is taciturn and only gets over himself when publicly forced to. Elsje initially isolates Sally by monopolizing the attention of the one girl who seems to like her. When Elsje finally warms up to Sally, Sally quickly becomes the vehicle through which Elsje will “save” her brother. That dynamic between the two never really changes, yet is never questioned.

The characters are really just set pieces so that Sally can navigate learning “lessons” about independence and self-advocacy. Sally’s first lesson is that the person who was primarily responsible for her care at school is an asshole and so is Sally’s mother. I admit I remembered this part. I can’t remember if it struck me as odd upon my first reading but my alarm bells were ringing by the second reading.

On Sally’s first morning home from the institutional school, Sally’s mother left her alone to dress despite Sally always having needed help dressing before. She understandably panics at being expected to independently perform a task that she has always needed and always been given assistance with before.

Turns out all the clothes are made so Sally can dress independently and the school guardian recommended them! Prior to that moment Sally had been expected to dress herself in clothes without adaptations and there was always someone to assist her with the things she couldn’t do. She had no reason to expect accessible clothes. Her mother is also a jerk about Sally not noticing the clothes were accessible. Her mother tells her a story from when Sally was FOUR and scared of the beach until her dad ignored her fear and just plunked her unable to escape the situation ass in the surf. In this blatant false equivalence Sally is immediately enamored of the water but her mother reminds her that the family taunted a FOUR-YEAR-OLD with the nonsensical nickname Scarey Sarey (Yes, Scarey Sarey not Scardy Sarey). The message is supposed to be “how do you even know if you like something until you try it”. That, however, ignores the context where Sally has no reasonable expectation of accessible clothing. She’s never experienced it before and we learn that the person most responsible for her care has been withholding this kind of access in the institution. The book doesn’t really get into the complicated politics of normalization that are hinted at here. Sally is wrong and must learn a lesson, not her mother.

The book is full of these false independence messages. Apparently, in the world of Mine for Keeps nondisabled siblings are just tripping over themselves to do a disabled siblings chores (anecdotally, this seems suspect) instead of trying to adapt the chore to make it accessible.

This is the one place where a book full of otherwise toxic disability messages shines. Sally is constantly being consciously accommodated. She isn’t left out or left to figure it out on her own. People consider their impact on Sally. People apologize when they didn’t consider how their actions would impact Sally. This is restricted to areas of physical access though as much of the story seems to care less about how people treat Sally as a person (see: Elsje’s peer pressure). Socially, Sally is only friends with people who approach her. There is very much a vibe of “if they are smiling, they are safe”. Considering the direction Elsje’s character takes this is unfortunate.

The implication at the end of the book is that Sally has found community but, she only seemed to get it via that age-old literary device of “plot convenience”.

Despite trying to challenge the standard disability narrative, Jean Little reinforces it. I only noticed how she subverts the narrative with Piet on my third reading and that only because the book abruptly ends there. So, I guess Sally only existed to save Piet after all.

How to Support My Work

So now for the very in-depth appeal for support for mu PhD. Please read through this, 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 Wish list 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

All the ways You Can Support Me Completing My PhD in Critical Disability Studies

Image Description: A white woman with blond hair and glasses is smiling at the camera while wearing a white button down oxford shirt under a green cardigan
Image Description: A white woman with blond hair and glasses is smiling at the camera while wearing a white button down oxford shirt under a green cardigan

Don’t I look scholarly? Don’t actually answer that it’s a purely subjective question. As you may or may not know (depending on if this is your first time here) I am currently in year 5 of my PhD and it’s time to get this show on the road. I still have a few requirements that I need to meet called comprehensive exams before I can start on my dissertation properly.

I am forever a PhD student and never a PhD candidate (you aren’t a candidate until you are in dissertation phase)

My future dissertation is tentatively titled “We Still Hide Mad Women in the Attic: An autoethnographic study of how disabled/mad women are treated when I try to take public space.

The dissertation will be an in depth autobiography of my life largely lived in both socially curated and physically forced isolation. My story will be juxtaposed with the real life stories of the mad women history hid away n attics or asylums. The story of hidden disabled and mad women now and in history would not be complete without an understanding of the mad woman in culture. Am I my own person or am I little more than Bertha Rochester raving in her attic for the sole purpose of creating the moral conundrum “is it wrong to cheat on one’s mentally ill wife” (the answer is yes by the way).

In order to complete this research I am going to need to do a lot of reading (of course). My preference for reading academically is to use kindle books on a iPad because it makes taking and organizing notes simple There are, however, a number of books that cannot be had in kindle format. To that end I have created an amazon wish list specific to the books that cannot be gotten in kindle format (I may add more later). That list is

Books I need for my book audit comprehensive exam that cannot be bought for kindle

I have created a similar list for my dissertation at large but the time frame for that isn’t as pressing

Dissertation Books not to found on Kindle

Unfortunately, ebooks are themselves not free and while the selection of academic books now available for kindle is growing but so is the price of ebooks. If you would like to help with my real book fund. You can send me an Amazon Gift Card to

kimberleyjanephd@gmail.com

(this is not my personal email, I will not be answering queries through it. Find me on Twitter if you want to talk)

You can also support me directly financially in a number of ways.

You can sponsor me for a monthly amount on patreon

If you are only able to make a one time contribution you can transfer money to my paypal

If you enjoy a little whimsy with you direct giving you can buy me a coffee (contributions must be in multiples of three uses paypal)

Buy Me a Coffee at ko-fi.com

If you prefer to buy me something that would improve my quality of life

I have a disability accessibility wish list too

If the idea of using a third party site makes you uncomfortable, you can also send me an interac e money transfer direct from your bank account to the email,

kimberleyjanephd@gmail.com

All items and monies received will be used directly to fund my PhD, maintain the running of this blog and cover living expenses (can’t get a PhD if you are homeless and have no food).

If you cannot support me financially but still want to help, share this post widely. Share my other work widely (I get a tiny bit of ad revenue)

As always thank you for your support, I can’t wait to get into the meat of this dissertation. The stories of disabled people are important and far to often not told or worse, told by someone else.

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.

I was “So Lucky” to Review Nicola Griffith’s New Book: A CripReads Review

so lucky cover

Image Description: The cover of Nicola Griffith’s book “So Lucky”. The title and author’s name appear in a large font made to look like scraps of burning paper. They appear on a black background

When I was asked to write a review of Nicola Griffith’s upcoming novel “So Lucky” (to be released May 15) I had no idea that the most frustrating part of the process was going to be figuring out how to summarize the book without spoilers. I have ultimately decided to give up on that entirely and just copy and paste the summary of the book provided by the publisher. I will only preface this summary with the opinion that I think this summary is both misleading and does not do the book justice.

So Lucky is the sharp, surprising new novel by Nicola Griffith—the profoundly personal and emphatically political story of a confident woman forced to confront an unnerving new reality when in the space of a single week her wife leaves her and she is diagnosed with multiple sclerosis.

Mara Tagarelli is, professionally, the head of a multimillion-dollar AIDS foundation; personally, she is a committed martial artist. But her life has turned inside out like a sock. She can’t rely on family, her body is letting her down, and friends and colleagues are turning away—they treat her like a victim. She needs to break that narrative: build her own community, learn new strengths, and fight. But what do you do when you find out that the story you’ve been told, the story you’ve told yourself, is not true? How can you fight if you can’t trust your body? Who can you rely on if those around you don’t have your best interests at heart, and the systems designed to help do more harm than good? Mara makes a decision and acts, but her actions unleash monsters aimed squarely at the heart of her new community.

I went into reading this book knowing very little about it beyond the fact that the main character was dealing with the transition of becoming disabled as an adult. The main character, Mara gets a diagnosis of Multiple Sclerosis early on in the book. I also knew that the author, Nicola Griffith has multiple sclerosis. Griffith also co-hosts the #criplit Twitter chats with Alice Wong, founder of the Disability Visibility Project.

I genuinely think that the less you know about this book before reading it, the better. I also think that you should definitely read this book. It is a good story that is engagingly written. It also offers a great and realistic depiction of disability.

Any attempt to more clearly describe the book or even sections of it would inevitably lead to spoilers.

Now I fully admit that I don’t have MS. The closest I’ve ever come to experiencing MS is when a former coworker became convinced that my cerebral palsy was really MS and spent a week trying to convince me that I didn’t understand my own body. That said, there are a lot of moments in this book that deal with situations that are not diagnosis specific.

What I love most about this book is how real those moments of the disabled experience are. I loved reading about how Mara engages with her newfound disability and how she shifts how she interacts with the rest of the world. I love that she makes decisions that I disagree with. I love that she makes decisions that I wouldn’t because she considered an angle that I hadn’t. I love that she is a whole character with a real life.

Mara also offers a level of intersectionality that we rarely get to see in media representation of disability. She is a woman, she is queer, we get to see her navigate relationships, she isn’t desexualized, and she surrounds herself with a diverse group of friends and colleagues.

My only real criticism of the book is that the ending feels rushed. It’s a complete ending and all the loose ends are tied up but it just feels rushed. Basically, I finished it and wanted more.

The book is good and you should read it but I would be remiss if I didn’t acknowledge why this book is important to me. There have been so few opportunities in my life where I have been able to see myself in media. While, Mara and I are very different people with different disabilities, we still share common experiences. The way that Nicola Griffith navigates the nuances of disability feel more real than anything I’ve read by a nondisabled person. It is real and raw. Griffith doesn’t pull any punches just to seem more approachable for a nondisabled reader and even among what little fiction writing about disability by disabled writers there is, this is still a rarity.

I really hope that this will be the start of a trend and that there will be more books with unapologetically disabled characters that are written by people who really understand what that means.

So Lucky will be released on May 15, 2018 for more information on where and how you can purchase a copy click here.

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

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