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.

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Making Sense of a Stolen Year: Mental Illness in the Context of an Abusive Therapist

Image Description: A white woman with large glasses smiles at the camera while wearing a Toque (deal with it nonCanadians) for the CUPE local 3903
Image Description: A white woman with large glasses smiles at the camera while wearing a Toque (deal with it nonCanadians) for the CUPE local 3903

It all started with the historic 2018 CUPE 3903 strike in Toronto (longest post secondary strike in Canadian history). I mean no it didn’t you don’t trigger your PTSD during a strike only to have it open up flashbacks to your childhood. However, for the purposes of this blog post, I can’t go through that lifetime of trauma. For that you can wait for my dissertation “We Still Hide Madwomen in the Attic” (link to twitter thread on how you can support me and my work, it will be repeated at the end of this post).

The strike was hard for a number of reasons. Initially simply participating with the strike was a struggle. I believed in the principles I believed we were fighting for but I learned quickly standard picketing daily was a physical impossibility. Accommodations for union members who couldn’t picket or who couldn’t picket full time were very poorly organized. This remained a stressor throughout. By the end of the strike (months after it began) I had become so confused by work expectations on and off the picket line, I sometimes just didn’t go.

This was not helped by the inevitable strike staple of being threatened with near constant vehicular death. I was body checked by pedestrians on several occasions regardless of whether I was blocking the sidewalk. The disruption to campus was enough to incur the violent wrath of pedestrians.

Then there were the drivers who always thought that they had special reasons to skip the predetermined picketing schedule.

For those unfamiliar with a legal picket. Picketers are allowed to delay but not stop traffic. Courts have been forgiving in how they define delay versus stopping in a strike scenario.

Picketers usually pick a set period to delay traffic before allowing it to proceed before picketers again take to the streets to delay traffic.

A picketers job description is essentially to walk in a circle in the road and try not to die. Whether that’s getting off the street fast enough when the current delay is over or because some driver has decided that they don’t care about the people in the road. We had people zip through on motorcycles (not safe) or simply drive on the sidewalk to bypass our picket line.

Through it all through the incident that sticks in my mind the most was when a member of staff for York’s Counseling Services decided to oversell the importance of her job to skip the line. It worked a couple of times and at least one coworker started copying her.

The problem? There is no reality in a university campus counseling office where students lives are endangered by an entirely predictable delay. She just didn’t want to shift her morning schedule. When the people who make the decisions on which cars get special treatment (emergency vehicles obviously, parents taking their kids to daycare, I think there were a couple other) were informed of her exaggerated status, she got angry and actually began suggesting that if we did not continue to give her special treatment “people might die”. We didn’t give her special treatment. I wrote a strongly worded letter about using clients as pawns and how that reduces faith in counseling services at York (I’d certainly never trust anyone who works there, I never got that lady’s name).

A strike that started in March plodded straight through June and I actually got a bit of a respite, though not the respite I’d hoped for.

Last year I fundraised to go to a disability law summer school in Galway, Ireland. I enjoyed the summer school as much as possible but unfortunately had some serious medical side effects from traveling. I ended up missing more than a day sorting out how to deal with a bad drug reaction in a foreign country. I was on the drug because medical marijuana isn’t legal in Ireland so, I needed a replacement med for my chronic pain.

I ended up leaving the school early on the second day, to wander around Galway, looking for a health food store so I could pay an ungodly sum of money for CBD oil. I spent the next day in bed purging the demon drug from my system.

Ireland is pretty though

Image Description: Bed and Breakfast outside Shannon Ireland where the airport I flew in and out of was.
Image Description: Bed and Breakfast outside Shannon Ireland where the airport I flew in and out of was.

I did return to the summer school when I fely better and enjoyed what little time I did spend at the summer school.

Hey look they even gave me a certificate.

Image Description: Me shaking hands with a smiling woman with light brown hair. I am holding the certificate in my left hand
Image Description: Me shaking hands with a smiling woman with light brown hair. I am holding the certificate in my left hand

As much as I enjoyed my short respite from the strike, it was still going strong and tensions were running high. I experienced some horrific in person ableism from a fellow union member. On top of the stress from the threats and the near constant messaging of unwelcome we got from the university, I no longer felt safe on the picket line. I rarely went after that.

We were ultimately legislated back to work by our incompetent premier Doug Ford. Who couldn’t even be bothered to include a return to work protocol.

The end of the strike was a confusing nightmare. There was pre-strike work that needed to be done quickly because the Fall semester was imminent. We needed to find out how much we would be paid for that work (there was no standard).

It is around this time that I started dissociating. I was still able to mostly function. I was able to complete my TA duties but that only lasted a few weeks. I was falling apart. I knew I wasn’t going to be able to get grounded on my own again. So I did something that was a long time coming. I went to my doctor and got diagnosed with PTSD and anxiety. I’m pretty sure the anxiety has always been there. The PTSD has been around since at the latest 15. I’ve spent a long time coping.

It’s no wonder that it took events as dramatic as a strike to crack me so bad I couldn’t find the glue to ground myself and move forward. Both my doctor and I agreed that I needed therapy.

I just chose the worst possible therapist. She seemed to be perfect. She advertised with queer friendly service providers. She described herself as,

Whether we work relationally and/or somatically, my practice is grounded in the frameworks of intersectional feminism, anti-oppression, social justice, queer theory & harm/risk reduction. I am sex & kink-positive, sex-work positive, class-conscious & anti-racist.

Amelia Sloan

She also directed her ad at the most vulnerable people

Services Provided: Counselling/therapy

Client Groups: Men, Women, Trans people, Children, Youth, Adults, Seniors,

LGBT parents, Family members of LGBT people, Two-Spirit, Intersex, People Living with Disabilities, Racialized Communities, Gender Independent Children

Amelia Sloan

This quote from her website seems particularly ironic,

I work with individuals using Relational Somatic Psychotherapy, Trauma Therapy & Sex Therapy. My approach creates an empathic, non-judgmental & safe space where you are the expert of your experiences & where we can explore deeply the feelings, memories, thoughts & experiences you have. We will start wherever you are at & moving at your pace using my gentle but direct approach.

Amelia Sloan

As someone looking for trauma informed therapy that would consider my particular location of intersectional oppression seemed perfect. In our first session I laid out my goals and what I felt my current issues were. I made it very clear that I was autistic and would not be masking during sessions as masking has been connected to suicidality. She agreed.

She gave me a brief overview of her approach and we began what I thought was the joint work of therapy. I would discover about nine months later that my therapist and I had never been on the same page. Not only that in the misguided (I really don’t know what her motive was) to heal me, she was in fact doing psychological damage.

I recently received a copy of her clinical notes. Nine months of therapy was summed up in 8 pages single spaced. Nothing that resembles me can be seen in those pages. She got annoyed that I would let her “regulate me” whatever that means.

Those clinical notes paint the picture of someone who had no life whatsoever during the time I was in therapy. While this wasn’t true, in hindsight I can see the way she actively isolated me from my support networks.

Regaining control over one’s ability to regulate one’s emotions is not an overnight affair. I’d been trying to take positive steps even before I set foot in a therapist’s office. Stepping back is why I stopped blogging last year. It is also why I pulled back from a lot of the Twitter activism I was involved in.

My therapist however sought to compound that isolation. She encouraged my justified anger at my sister and expedited an inevitable estrangement but would that sister have called the cops on me when I couldn’t handle processing the abuse I experienced at the hands of a trusted therapist and started making delusional phone calls to my brother, getting weird and inappropriate in certain people’s DM’s and posting weird shit on my timeline.

I was barely conscious at the time, I almost never left my bed. I was the definition of not a threat to myself or others but my sister convinced the police that I was potentially violently unpredictable. This woman initiated the estrangement by the way. She blocked my number and blocked me on social media. I couldn’t threaten her if I wanted to. Not to mention she lives somewhere that requires a car to get to and I can’t drive.

The psych ward wasn’t helpful in sorting anything out. It felt like the attending psychiatrist on the rare occasions I interacted with him was just looking for the volatile and potentially violent person that I have never been. I have asked my doctor to get my notes from the psych ward stay. They should be interesting.

Perhaps, the worst thing my therapist did to me was keep me uncomfortable stasis. I was never ready to return to blogging and shouldn’t I really spend less time on social media? The whole time directing our discussions as much around horrific trauma as she could manage. I genuinely expect my chattiness saved me from a lot worse damage. It’s also probably why I missed the signs of abuse.

According to her notes, I never advanced much past being able to recognize when I’m in a manic state. She maintained this misconception by frustratedly pointing at a terrible visual aid (think basic science over head slides with psych 101 terms and some graphs)and telling me I was in hyper arousal (her word for being manic). I would inevitably have an autistic meltdown because I was trying to tell her what I was doing to regulate my emotions during this time and she kept interrupting me with vocabulary.

Once I got upset though she would swiftly smooth the situation over. I suspect she managed get me to trust her by making the early days of therapy very much about getting me at least vaguely emotionally balanced. Which meant getting me medicated.

After about a week of horrific side effects my anti-anxiety meds worked extremely well. I was also actively doing the work of healing my body to the closest I can get it to whatever its original factory settings will allow for.

In hindsight the fact that I remarked on more than one occasion “it’s weird, I seem to be in the best physical shape of my life but the worst mental health”

It was only very late in our professional relationship that she began overtly telling me to let go of things that I as a disabled person cannot let go of. I remember one incident where she was telling me to let go of some ongoing discrimination I was experiencing.

I was genuinely in tears just repeating “I can’t escape my body, I can’t escape my life or how it is impacted just by living in this world”

Apparently, my therapist thought I was having an epiphany about just laying down and taking it I guess, because I was telling her quite clearly that her method was not survivable.

Clearly,I should listen to myself more. The reason I wasn’t making as much mental progress was because I was being held back.One of the reasons I never saw the control and the danger was because I was accidentally thwarting her by controlling the sessions through chattiness. Everything I aspired to do, the therapist got in the way. She was subtle about it. She’s not even consistent in her 8 pages of notes whether I should be pursuing any goals, long-term or short-term. I have no doubt she was looking for more trauma triggers. That she successfully found so few and the triggering moments of therapy were rare is probably why I failed to notice what few red flags there were until I had escaped her.

I suspect our professional relationship came to such a sudden and dramatic end because I wouldn’t let go of school. This meant that I couldn’t let go of the baggage I had around school because she hadn’t helped me process it. An end was inevitable. School necessitates more social interaction. She would never have been able to maintain the degree of control that she had over me if I was actively a student.

Our last session she was clearly desperate. Much of her advice (when she was egging me on into unhealthy levels of anger about abusive family members who may never be held accountable) involved telling me “to let it go”

This is great advice in moderation. You always have to know when to choose your battles. The problem is that when you experience oppression sometimes you don’t get to choose whether you fight or not. You just get to decide how much fight something is worth.

Which is why I filed a complaint against my abusive therapist. It’s going to be a long hard fight but it’s a fight that regardless of outcome is worth the battle.

Historically, I have survived by jumping from opportunity to opportunity but in my current situation, there was no way but forward. My therapist tried to cut me off socially and put me in a cage that I did not know how to get out of until I fired her.

Now I know my road forward is to get back to my PhD and working on an autoethnography (academic memoir) about how we still treat mad and disabled women tentatively titled “We still Hide Mad Women in the attic” (there will be a shameless plug for help with funding this and just surviving my PhD in general at the end).

This last year I was stuck and I was isolated and I survived this year not because I finally asked for help (that didn’t turn out so great) I survived because people reached out. People reached out just because they were concerned. The incomparable Alice Wong, who actually reached out to check on me the day I got my PTSD diagnosis. The people on social media who respected that I was pulling back from activism but who never let me lose those ties of friendship. Inside jokes save lives. And to the people who reached out because they too were going through their own brand of shit and decided to offer to help carry my load while I lightened theirs.

I was never truly completely isolated but that therapist took a lot of my choices away. She had financially bled me dry. Of course I had to come back to school, I can’t eat or pay rent without that student loan.

It really is only in hindsight that I am seeing the level to which she controlled my life both financially and socially.

The way forward is to focus on my complaint against her but also get back to learning about myself in healthier ways. I’ll probably need therapy again but for right now, I’m energized by working on my dissertation proposal and the journey from being a PhD student to a PhD Candidate so that I can get to the real work of my dissertation and telling my story.

Image Description: A smiling white woman wearing all black stand between the decapitated head of a snow man and it's body. The snow man is stylized like those in the Calvin and Hobbes comics, face seeming to evoke pain
Image Description: A smiling white woman wearing all black stand between the decapitated head of a snow man and it’s body. The snow man is stylized like those in the Calvin and Hobbes comics, face seeming to evoke pain

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

Buy Me a Coffee at ko-fi.com

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

Redefining Independence on the Psych Ward

Image description: A blond white woman wearing a blue, shirt,beige shorts and a fanny pack, walks out of some tall grass arms outstretched
Image description: A blond white woman wearing a blue, shirt,beige shorts and a fanny pack, walks out of some tall grass arms outstretched

I recently spent eight days in the Humber River Hospital psych ward. It was a strange experience, made stranger by the fact that my presence on the ward made it an atypical experience not just for but for those who work there as well.

There are two things that made my stay on the psych ward difficult. First no one told me anything. There’s a welcome package, they apparently give new patients when they arrive on the ward. I received this package the night before I was discharged. So I spent the entire time on the ward not knowing what was expected of me. This was conveniently or inconveniently (depending on your perspective) overcome by the fact that the psych ward was almost entirely inaccessible to me in my current medical state.

I had initially spent my first night and almost the entire next day on the emergency psych ward. They watch you 24/7. There are CCTV cameras pointed at your bed. Yet, I was treated better there than I was on the general ward. The nurses, every single one treated me like a person. They were empathetic to the way I had been violently brought to hospital.

They were as accommodating as they could be. They gave me time to come out of the brain fog that followed my dissociative episode. One nurse went above and beyond to make sure I would get a breakfast and lunch that I would ear.

When I asked to take a shower, they immediately emptied the room that was clearly used for storage so that I could feel a little less gross.

The doctor who visited psych emerge was also kind and empathetic. There is literally nothing to do in the emergency psych department. So she brought me books to read.

So my transfer to the general ward was a bit of a culture shock. I was wheeled up by a porter but then lead on foot to be shown the common room and lunchroom. The importance of knowing these locations is important on the psych ward, I almost never set foot in either.

On the psych ward it became apparent that my resting heart rate was dangerously high. This resulted in my being very dizzy. As a safety precaution I rarely left my room. The one time I did try to independently go to the lunchroom and get my breakfast I became horribly dizzy only to discover that most of my meal was dairy based and I’m lactose intolerant.

I suddenly had try and negotiate food accommodations along with physical accommodations that challenge the very way the psych ward runs.

By not getting my own meals or returning my own trays, I was not demonstrating “independence”. At some point the nurses just start doing sitting/standing blood pressure tests which indicate that my heart rate remains dangerously high. They couldn’t ask me to leave my room. This time when I wanted a shower I asked for a bath chair because I was no longer certain I could stand long enough for a shower without passing out. It took a long time to get that bath chair. I had to ask twice.

Despite my stay in the psych ward being objectively atypical, I was still being judged by the standards of “independence” used by the staff to determine emotional progress. Even though they objectively knew I could not participate in these daily tasks, I was still held to the same standards as anyone else on the ward.

I was in the psych ward for 8 days. Only the first 48 hours were mandatory. I beat my form 1 (the document that says you can be held against your will because you may pose a risk to yourselves or others) easily. Admittedly the attending psychiatrist never mentioned discharging me right away. By that point I had already had a chest X-ray had 5 vials of blood drawn. I was concerned about my heart, so as long as they focused on that I was fine to stay.

My weakness, largely made my stay uneventful. I had the odd spat with a nurse who thought she could run a power move on me but for the most part, I relaxed, napped and read.

My occasional forays out of my room only happened when my sister was visiting and I felt like I had a chaperone. She would return my food tray for me etc. One day I felt up for a walk, so went with my sister to sign myself out. This is where I learned that despite being a voluntary patient, I had no privileges. To add insult to injury, no one at any point had explained that I was under a privilege system at all.

My sister doesn’t like conflict so, she’s already scratching our names off the sign out sheet. I however, stared at that nurse and demanded to know how I could be subjected to a privilege system I had never been made aware of, particularly as a voluntary patient. Then I glared at her until she made a phone call.

The photo at the top of this post was taken during that brief break for freedom.

I was discharged without much fanfare not long after receiving an echo cardiogram there was no medical followup about my heart issues (which have calmed down somewhat since leaving the hospital) or for the dissociative episode I experienced. All I got was a paper with a lack of detail and the diagnosis of psychosis. I suspect the truth is more complicated than that. I’ve been describing it as a dissociative Fugue. I came to myself quickly enough in the hospital after people stop reacting to me with anger or violence.

This is how I was able to so compliant up to the point of inaccess. Yet my way of surviving independently did not match how the people running the psych ward viewed it.

It’s a good thing they didn’t make performing independence a criteria for my discharge. Or I might still be there. I’ll have to wait to receive my records to find out why I was really discharged and if the hospital learned anything useful about me at all.

How you can support my work

Until my life starts to get back to some semblance of normalcy, 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.

Reflecting on the Fact that Hans Asperger was Really a Nazi and not just Working from the Inside to Protect Vulnerable People

There have been a couple major articles written about Hans Asperger, the man who categorized what would eventually be called Asperger’s Syndrome and then eventually just folded into the autism spectrum. These articles, the first of which was printed in the New York Times and the second in The Guardian both discuss Asperger’s history prior to and during WWII. A lot of English language research about Asperger has framed him as a man who protected disabled people from the harsher and more lethal aspects of the Nazi’s euthanasia programs. New research that did not rely so much on texts that had already been translated into English paint a much less flattering picture of Hans Asperger. This new research more clearly indicates that Asperger was not altruistic in his actions and personally made decisions that led to the deaths of disabled people.

I was diagnosed with Asperger’s Syndrome thirteen years ago. So how do I feel about the fact that the man who lends his name to a diagnosis I was given (Asperger’s is no longer an officially recognized diagnosis. As of the publication of the DSM V the diagnosis is just considered part of the autism spectrum)?

I’m completely unsurprised to be honest.

Part of this is probably because I never read books like Neurotribes or Asperger and his Syndrome (link leads to a paywall). Both are considered influential works on autism and both paint a kinder picture of Asperger either by glossing over his Nazi ties or suggesting he actually protected his patients from the Nazis. I have no preconceived notions to be challenged in the face of this new information.

Additionally, I’m aware enough of the history of men who are credited with discovering or categorizing other disabilities and that history suggests that if people googled their condition’s namesakes, a lot of people would be uncomfortable disclosing their diagnoses just to avoid association with the people whose names are attached.

Consider John Langdon Down, the man who categorized Down Syndrome. He initially called the condition “Mongolian Idiocy” and if that sounds really racist, it’s because it is. He called it that because he believed that people with intellectual disabilities were evidence of evolutionary throwbacks. He believed that people of colour were less evolved than white people and thus inferior. He further believed that because he could find similar physical traits between certain disabilities in white people and nondisabled people of colour that this meant that they were genetically similar racially. Basically, intellectually people were inferior because they weren’t genetically white.

He was a real winner. You can read more about his theories on race and disability in his 1866 paper Observations on the Ethnic Classification of Idiots. It’s awful so I don’t recommend it.

Ironically, Down Syndrome only became known as Down Syndrome after people finally clued into the fact that the term Mongolian Idiocy is just deeply offensive, so they changed the name to include the name of the man that invented that ableist and racist name for ableist and racist reasons.

I’d really like to sit those people down and ask them what they were thinking.

I’ve never identified as an “Aspie” as many people who received an Asperger’s diagnosis do. I have always felt that autistic far better described my experience and was just easier for other people to understand. So I don’t need to figure out what this means in relation to a label I identify with. I am also unsurprised that Asperger himself would have landed me with the not so flattering label of “autistic psychopath”.

It is interesting that these men didn’t name these conditions after themselves. Other people chose to do that after the terms those men came up with were recognized as harmful.

I am also aware that there is some concern about the revelations about Asperger in relations to people who actively identify as Aspies. There is a socially constructed hierarchy of autism which is usually defined by functioning labels. These are often distilled into high and low functioning. These kind of labels are harmful and many within the autistic community fight against them. Asperger’s Syndrome was considered a milder (read ‘higher functioning’) form of autism so some people who identify as Aspies use their specific diagnosis as a way to signal their place at the top of the hierarchy.

While this behaviour (and yes I know it wasn’t everyone so please no angry comments about how “You’re an Aspie but not like that”) was always harmful to the autistic community at large. There is now a sense that it is even more sinister considering the revelations about how involved Hans Asperger actually was with Naziism.

On that note I’d say, things aren’t worse because a Nazi did it first. The Nazis hold the place in our collective anger, fear and hatred because they did those awful things as a democratically elected (at least at first) and widely supported political movement and governing structure. They weren’t just awful people. They tried and succeeded within their own culture in making bigotry a culturally moral imperative.

So while the parallel is clearly troubling and uncomfortable. People who hold or have held feelings of superiority because of their specific Asperger’s diagnosis are still bad but no worse simply because we now know that Asperger was a Nazi. Their misdeeds are their own.

As for people who simply identify as Aspies because it was a way to claim community, the answer is less clear. While people should be able to identify however they want and Asperger’s name being attached to their diagnosis was a decision made in the 1980s by someone who wasn’t Hans Asperger. Asperger never put his name on the condition, it isn’t a way of claiming ownership or being given ownership of the people who have that label. So in that context, the term Asperger’s is relatively neutral. However, while people may individually decide that they are still comfortable with the label, they can’t force other people to be.

These revelations will inevitably stigmatize the name generally. More specifically because of how many different marginalized groups were targeted by the Nazis, there are just a lot of people who will understandably want to distance themselves from any reminder of that history of violence and genocide.

I suspect that we will see far fewer people identifying as Aspies. This has I think already started since already fewer people will be hearing that term at the point of diagnosis because it isn’t an official diagnosis anymore.

As a final thought…

Can people just stop naming medical diagnoses after the people who first categorized them? Particularly if the term is being changed specifically because that scientist gave it a horribly offensive name, to begin with.

It’s bad enough that people try and define us by our diagnoses. We really don’t need to be defined by our vague association with the people who first studied us too.

 

 

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Dear Judith Newman, I’m Writing this For You because You Didn’t Write For Me

 

boycott to siri

Image Description: Text “BoycottToSiri” in white on a black background

 

Dear Judith Newman,

I have not read your book To Siri With Love and I frankly don’t intend to. I know this will frustrate some people, maybe even you but I don’t actually think it is relevant to the thing that I want to criticize. I have seen my fellow actually autistic people in pain from your book. I have read their critiques and there are things about your book that quite frankly are unlikely to be saved by added context. The transphobia that exists in the introduction to your book, that you wrote that you wanted the power to sterilize your son, the sexist and disrespectful way you referred to Amythest Schaber.

Yes, yes I know, you’ve since said that you no longer plan or intend to sterilize your son. The thing is it’s too late. You published that awful bigotted sentiment in a best selling book, you can’t take it back now. The damage of that awful statement is already done. Even if you remove it from subsequent editions, it’s still out there and that message will be stronger and longer lasting than any weak backpedalling you do now.

You claim that you apologized to Amythest but as far as I’ve seen you’ve at best made a fauxpology and at worst you’ve simply made excuses. You also still clearly don’t understand why what you did was wrong, so I will again try to explain it to you. There are two major issues.

You described Amythest as a manic pixie dream girl. This term describes a narrative device where a female character (usually quirky) exists entirely for the benefit and consumption of a straight male protagonist and the presumed straight male audience.

You did somewhat address this critique but I have yet to see an actual apology. You have so far only been sorry that your intent was not effectively conveyed. You say that you thought the term was just a more modern version of gamine (a word so obscure I admit I had to look it up). You were just trying to be down with the kids. This response shows that you didn’t understand the other part of why calling Amythest a manic pixie dream girl was inappropriate.

You shouldn’t have been describing Amythest at all. What does what Amythest looks like have to do with the YouTube videos you were citing? Nothing. Reducing Amythest to a physical descriptor regardless of the underlying meaning of the intended compliment was itself inappropriate. People did not need to know that you think Amythest is gamine (a girl with mischievous or boyish charm) to know those videos are full of great information.

The thing I really want to talk to you about though is your response to the backlash from actually autistic people. You brushed off those criticisms by saying that you did not write your book for us.

This is a big problem especially for someone who claims to be autism friendly. With this statement, you prove that autistic people are just props for you. You did not care about the impact of this book on us. You also hide behind stereotypes to deflect from criticisms.

Apparently, we can’t understand your book because you put jokes in it. I can’t speak for all of us but I assure you there are many autistic people who understand jokes. We also know when they are not funny or at our expense.

There is something so utterly isolating about being told that a book where autism is central to the narrative was never intended for autistic people. Are we not part of the population? Do we not read? Shouldn’t you have considered that we might read it? That we are hungry for good representation?

If you are as autism friendly as you claim, shouldn’t you care more about what we have to say? Did you consider getting a sensitivity reader before you published?

You did not write for us and because of that regardless of the content of your book, you promoted our continued marginalization.

You wrote about us without our input to be consumed by people who already think of us as other. By erasing us from your inteded audience you turned us into zoo exhibits.

You did not write for us and the only real reason for forgetting that any part of the population might be part of your audience is because you forgot or don’t acknowledge that we are.

I write this for you because you did not write for me and I want you never to forget that autistic people read your book anyway. autistic people had opinions on your book anyway and you did not listen. Worse than that you have tried to actively silence us.

You did not write for us. Well too fucking bad, we remember that we human even if you and Harper Collins forgot. We’ll read whatever we want and protest when it hurts us. Rave reviews from Jon Stewart be damned.

I write this to you to remind you that regardless of your intent you have caused harm and your response to that has been erasure.

I write this also for anyone who thinks they can write about a marginalized group to which they do not belong and deflect backlash with “well I didn’t write it for you” as though that erases the harm instead of increasing it tenfold.

Sticks and stones may break my bones but silencincing autistic voices hurts far more than me.

Sincerely,

Kim Sauder (Actually Autistic)

 

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The Good Doctor Continues to Infantalize its Autistic Character

The Good Doctor

Image Description: Promotional poster for the upcoming ABC show, The Good Doctor. The title appears in blue over a grainy black and white image of half of series star Freddie Highmore’s face (he is a young white man with dark hair). In contrast to the black and white, his eyes are a vibrant blue.

After watching the second episode of the new ABC series The Good Doctor (you can read my thoughts on the pilot here), I am left wondering if Dr Shaun Murphy could possibly have gone to medical school. He has a vast understanding of certain aspects of medicine and biology but no real comprehension of practical application. It leaves me wondering how he could possibly have completed a medical degree without apparently ever having been in the same room as an actual human patient.

This episode really makes Shaun seem like an alien who has never encountered humans before. This is I expect partially an attempt to highlight Shaun’s social isolation. Social isolation is a common and real aspect of the autistic experience. The show, however, takes it to an unbelievable extreme. It’s not just that Shaun has difficulty connecting with other people and experiences marginalization as a result. It’s as if he never even been around people or consumed any sort of popular media.

This is worsened by the complete lack of other autistic people in not only the show but the fictional universe in which it inhabits. Other autistic people are purely hypothetical. The concept of an autistic community is entirely absent. This allows the show to constantly juxtapose Shaun with a definition of autism that they choose rather than show that Shaun’s humanity is not contingent upon overcoming a very limited and clinical understanding of autism is. So while the show acknowledges the existence of other autistic people, they are never seen. This only highlights Shaun’s isolation because simply by virtue of being seen he is different from other autistic people.

How is it that an adult who presumably went to medical school, an endeavour that requires contact with other people like fellow students, university administrators, professors and yes even patients is not only clueless about bedside manner but who is entirely unaware of sarcasm or its purpose in communication.

I am loathed to say it but even The Big Bang Theory does it better with Sheldon Cooper because at least he is aware of sarcasm even if he can’t always recognize it.

It is entirely possible and in fact likely that an autistic person be both aware of sarcasm, have a theoretical understanding of its usage and purpose, and still have difficulty recognizing it in conversation. It is rather unbelievable that a man in his twenties whose life experience clearly brought him into contact with other people would need to ask a colleague the purpose of sarcasm. It would almost certainly have already been used to belittle him before.

Shaun Murphy clearly cares about people. Making his empathy clear is one of the few positives of the show. Yet, somehow the show wants us to believe that this caring has always occurred at a distance.

In some ways this utter cluelessness about people, makes the concerns of the show’s villains (those doctors who don’t want Shaun practising) seem valid. This seems to be a decision that replaces the more common narrative device of having the autistic character be the butt of jokes (though that happens in this episode too) with just utterly cringe-inducing interactions.

Somehow, Shaun got all the way through medical school and not have been coached in any way on bedside manner. He makes most of his patients uncomfortable or outright distressed.

In a subplot pulled directly from show creator David Shore’s previous medical drama House, a patient brings in a baggie of their own vomit (though in House it was their own poop and no, no one had requested a stool sample). The nurse supervising Shaun (because of course, they are infantilizing him) is horrified but Shaun just wants to run unnecessary tests.

Apparently, no one ever explained to Shaun that it is not only unnecessary but also inadvisable to run every possible test. No one ever explained statistics (something I presume he would be very good at) or how they can be used to determine the likelihood if a given test outcome and indicate the level of risk to not performing the test.

Shaun seems to think that it is reasonable to perform tests if there is even the smallest chance that something might be found.

This suggests that Shaun has also despite being self-described as poor never had medical insurance explained to him. Does no one in this universe have to pay the bills for the things he does? I mean maybe? It’s already clear that the ADA doesn’t exist in this universe so why would the rest of the infrastructure of the American healthcare system (which I’m sure gets discussed at some point during medical school) exist either?

There is really no reason for Shaun to be this clueless. He should have met checks and balances in med school and in interactions with fellow students, teachers and patients. I really need to see flashbacks to his medical school days. How were none of these concerns identified and addressed then?

It’s hard to believe they wouldn’t have been but that would require the character to be more complex. They would have to show the effort that autistic people expend to analyze and navigate personal interactions. Shaun is, however, not a complex character he is meant to be innocent and guileless.

Sarah Luterman, who has been doing episode breakdowns has twice described this infantilizing characterization to a T. First, by saying

“So far, The Good Doctor is basically House, if House was an adorable talking kitten instead of a pill-popping curmudgeon”

And in the second episode breakdown by saying,

“There is no adult human with a medical degree as naive as Dr. Sean Murphy. It’s ridiculously bad writing. Sean Murphy is not written like an autistic man, he’s written two autistic children standing on each other’s shoulders.”

The show has been confirmed for at least a complete first season and I do expect that there will be some personal growth for Dr Shaun Murphy in it. I however don’t expect them to ever answer the question of why none of that growth was possible prior to the events of the show?

 

 

How to support my work
If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

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But You Haven’t Seen it Yet: Why Critiquing Marketing of Future Portrayals of Disability is Important

The Good Doctor

Image Description: Promotional poster for the upcoming ABC show The Good Doctor. The title appears in blue over a grainy black and white image of half of series star Freddie Highmore’s face (he is a young white man with dark hair). In contrast to the black and white, his eyes are a vibrant blue.

Yesterday, I saw promotional videos for two television shows that will be premiering next fall. Both shows deal with characters that are likely autistic (though only one will acknowledge that). They were the trailer for new ABC medical drama The Good Doctor

and a first look video of The Big Bang Theory (TBBT) spin-off Young Sheldon. That video has since been removed so I can’t link to it.

I am concerned about both. I’ve written about my issues with how TBBT theory deals with the character of Sheldon Cooper who is deeply coded as autistic but the creator and writers refuse to acknowledge that (see here). Creating a prequel series focusing entirely on a Young Sheldon Cooper is only going to exacerbate those issues and concerns.

Based on the first look video, the prequel series is unlikely to be faithful to TBBT cannon. Sheldon has had some personal growth on the show but references to his youth generally paint a static picture of a walking autism stereotype. He doesn’t like to be touched, he is rigid in his rule following, he is blunt to a point beyond rudeness crossing the line into cruelty and scientifically gifted to the point of probable savantism.

These aspects are present in Young Sheldon but it appears that the show intends for the young to experience some personal growth or the series will be filled with a child tattling on his much older classmates for dress code infractions (and that will get old really fast).

He is shown possibly cultivating a touching relationship with his father. A character who is wholly absent from TBBT (having died prior to the events of the series) and generally not referenced with much emotion by any of the characters who knew him.

It is unlikely that the series will be able to stay true to a character who would eventually grow up to be Dr. Sheldon Cooper of TBBT without the content getting dry but as a prequel, it is unlikely that the series will remedy any of the more problematic aspects that arise from the staunch refusal to acknowledge that Sheldon Cooper is neurodivergent.

The show is likely to largely ignore cannon but its primary source of humour is likely to be the same as that surrounding his older self, at the expense of his neurodivergent behaviour. We can likely look forward to a show packed with a young socially clueless Sheldon constantly putting his foot in his mouth. I can only hope that viewers get tired of it fast and the show dies a swift death.

In the series The Good Doctor, the character’s–Dr. Shaun Murphy–autism is front and centre. The show is from David Shore who previously created House MD. It looks like he’s trying to recreate the popularity of an emotionally unreachable disabled doctor with this American remake of the Korean drama Good Doctor.

The trailer sets up red flags for a problematic portrayal of autism from the word go. It hits on a number of tired Hollywood stereotypes about autism (many that are shared by Sheldon Cooper)

The character is a white man (ditto Cooper)

He is a savant level genius (ditto Cooper)

He is labeled as high-functioning (for more on why functioning labels are gross, see here)

He is played by a neurotypical actor (ditto Cooper)

To add insult to injury, the show’s summary on IMDB asks this question

can a person who doesn’t have the ability to relate to people actually save their lives?

This plays into the lie that autistic people lack empathy. A myth that is increasingly being debunked.

The trailer also sets the show up to be classic inspiration porn. A story of overcoming the prejudices of a hospital board that doesn’t want to hire him and potentially overcoming autism itself.

The most believable part of the trailer is the scene where a room full of people try to justify discrimination. Believable that is until an advocate for Dr. Murphy (because of course the autistic character isn’t advocating for themself) launches into an impassioned speech about how hiring Shaun will act as an inspiration to others.

We hire Shaun and we give hope to those people with limitations that those limitations are not what they think they are. THAT THEY DO HAVE A SHOT!!!”

*bursts into tears from being so moved*

I’m kidding. This shit makes me sick.

It makes me sick because this character has been created specifically to be palatable to a neurotypical audience. He has been given special skills that exist entirely to make up for the less palatable autistic characteristics. Sure he’s socially awkward and might react strongly to loud noises but he’ll save your child when everyone else would fail. That but is the problem. We’re unlikely to see a medical drama where the doctor just happens to be autistic without the bells and whistles of a highly fictionalized savantism.

But neither show has been released yet, so why am I already concerned? I know I’ll get asked because I’ve criticized the marketing for media portrayals of disability before.

The simple answer is that the marketing is in and of itself worthy of critique. How companies choose to sell stories around disability can have as much impact as the stories themselves. I find it unlikely that CBS (Young Sheldon) and ABC (The Good Doctor) are catfishing their prospective audiences and that the shows will be drastically different from what their marketing says they will be.

In the case of Young Sheldon, get ready to laugh at an awkward child (who will be denied a diagnosis so you can pretend you’re not laughing at a disabled child) for his awkwardness.

In the case of The Good Doctor, prepare to be inspired by a highly stereotyped and false but comfortable version of autism that tells you that disabled people are valuable only if they can overcome their disabilities.

I want better stories. I’m sick of disability portrayals. I want actual representation but that would require actually hiring disabled people.

 

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