Monthly Archives: January 2016

The Sky is Green: On Autism Misrepresentation in the Media

Posted by crippledscholar on

This post contains spoilers for the CBS show Elementary, you have been duly warned.

When an autistic character shows up in film or television, they are far to often carbon copies of the same tired stereotypes. Monotone, savant level intelligence at math or math related field and of course the complete lack of social skills. There is very little variation here.

Cue last week’s episode of Elementary. BBC’s Sherlock’s American more humanized cousin. I suppose I ought to give them credit for trying to do things differently but they ultimately fail.

The show to it’s credit does try and do disability differently. Last season, the had a murderer with schizophrenia (nothing new here I know, crime shows love their mentally ill perpetrators). Unlike most crime shows which will throw a mentally ill perpetrator into the show if they’re to lazy to come up with a motive because “crazy” is a motive apparently. In the episode of Elementary, the schizophrenia is basically incidental as the character takes his meds and *gasp* has an actual motive for his crime. I’m still not sure if I think this is progress in portrayal of mental illness or not. Sure they toy will the whole unreasonable and erratic mental health stereotype but ultimately they take a different road to get to the same conclusion as so many crime shows before it. The person with the psychiatric diagnosis did it.

In this latest episode, they switch their focus to Autism where in keeping with their do things slightly differently but still rely on stereotypes M.O. they give us a character with “autism”.

Things they do differently,

  1. The character is a woman (when they are usually though not exclusively men)
  2. She uses self-labeling and refers to herself as Neuro-atypical ( a nod to the neurodiversity movement)
  3. She refers to others as neurotypical (though she withhold judgement on Holmes himself). This is her only moment where she shows any insight into the mental workings of others.
  4. They indicate that her “special interests” expand beyond her stereotypical vocation of computer programming. She also really likes cats (this might be a nod to the fact that women are often misdiagnosed or not diagnosed at all because our topic fixations are often more socially acceptable).

She is also treated differently than other autistic characters in crime shows. In keeping with the genre she is initially a suspect and when they go to her workplace to question her, her employer does what so many do when TV detectives come looking for an autistic suspect. He insists that she is innocent but is cryptic about how he knows this and insists that they’ll understand when they meet her.

If this were any other show, the autistic suspect would then be placed in an interrogation room where they would be unnecessarily harshly questioned until they have a melt-down and reveal their autism because no one had the decency to just tell the cops that they were autistic because where’s the drama in that?

Elementary sets you up for that but then doesn’t follow though because of course Sherlock Holmes can easily identify autism. Especially when it follows stereotypes so closely. The character is monotone and an extremely gifted coder. The icing on the cake of proof of both her autism and ignorance is that she can’t lie. He prompts her so say “the sky is green” which she refuses to do and appears to be very uncomfortable with the request.

I’m autistic, I’m a terrible liar  and yet I’ve managed to type “the sky is green” three times. Once in the title of this post and twice here. I don’t feel weird about it probably because I know that no one will believe it. If someone asked me to quote a lie knowing that we both knew the statement was untrue, I’d similarly have no issue with saying it.

Yet it is held up on the show as both the ultimate diagnostic tool and also evidence of innocence. We later learn the real reason that her boss knew she was innocent is because he was guilty. Autism was just convenient. It was a plot device.

These misrepresentations even when seemingly well-intentioned are harmful. They spread the lie that autistic people are basically carbon copes of one another with only minor variations. These are the kind of stereotypes that when widely accepted lead to us being described as people,

whose eyes are not windows to their souls but black mirrors

In widely circulated publications like the New Yorker. I’m not sure if this made it into their print publication or if it was only published online, either way the autistic community is understandably not pleased. The #NotBlackMirrors is going strong on Twitter.

It is time for the media to see autism as the spectrum it is and which they only pay lip service to acknowledging before falling back on stereotypes. This happens in both fictional ans supposedly nonfictional media.

As far as the media is concerned the spectrum is comprised of either people who are nonverbal and require constant care or people who are basically robots.

I mean, I’ll be honest, I’d love those math skills we’re all supposed to have. I passed basically every math class I ever took by the skin of my teeth with the exception of one anomalous B in grade 11. Seriously media, where are my math skills. I feel cheated.

But really being one or the other doesn’t really fit the definition of a spectrum now does it? Neither description is particularly accurate to individuals either. So I beg you, please do better, especially if you’re actually trying to convince people that your publication isn’t as fictional as a TV show.

 

Why Don’t You Just Drive?: The Difficulty of Publicly Legitimizing the Needs of an Invisible Disability

Posted by crippledscholar on

When I was in my early and mid teens, I was really excited about learning to drive. When I finally got old enough to start drivers ed at 15, I anxiously waited for my mother to sign the permission form.

These were the days before my autism diagnosis. They were hard years for me because I was so often confused which led me to have melt downs. These meltdowns were then misinterpreted by my parents as immaturity and anger management issues. So when I initially asked for permission to start driver’s ed, my mother said no. She expanded on her reasoning by citing my melt downs and expressing concern that I would be prone to road rage and might hurt someone.

This was a devastating thing to hear from a parent, that I was considered dangerous enough to be a significant risk to someone’s safety. I also disagreed with her and autism diagnosis and misinterpretation of my behaviour aside, I can now say for certain that she was wrong.

When I was finally allowed to take driver’s ed, the biggest barrier in terms of training was my cerebral palsy. Not because I physically couldn’t drive or believed that I couldn’t. I had grown up around a family friend who had an amputation at the shoulder, so I was well aware that you didn’t need two fully functioning arms to drive safely. My driving instructor on the other hand didn’t get the memo.

He spent an uncomfortable amount of time focusing on my cerebral palsy. He developed selective vision where I was concerned. He claimed I couldn’t do hand over hand steering, even though I can and he’d definitely seen me do it. So he suggested I use a device he called a “spinner” which is a knob that attaches to the steering wheel so it can be steered one handed. I found the device uncomfortable to use. When I took it home, my dad was shocked that I had been given what he called a “suicide knob”, as they allow the wheel to be jerked so quickly that you can actually flip the car. They are actually illegal for this reason. A fact my instructor had failed to mention. It is possible that if I had wanted to pursue using it, I could have gotten a legal exemption as an accommodation but the whole situation was just bizarre, particularly because, I genuinely didn’t need it and actually found it more difficult to use.

When I completed my driver training, the instructor gave me the lowest possible passing grade claiming that in our in car sessions, I had consistently only come to rolling stops at stop signs. Not only do I not remember doing this, he never once mentioned it. You would think that if I was consistently (or even once) making an error that it would be his job to point it out so that I could correct the behaviour. This grade and its justification is made all the more suspicious by the fact that he gave another classmate an A grade even though she had run a red light during one of her sessions.

I would love to say that I got my license to spite him but I never did. It wasn’t a case of parental discouragement either. I just actually hate driving. I find it really stressful and overwhelming. My reaction to this stress is not as my mother predicted to become angry, I just want to pull over and not drive anymore. I am certain my reaction to driving is actually directly linked to the fact that I’m autistic. It is rather interesting that the thing my mother was convinced (even though she didn’t realize it at the time) would make me a danger to myself and others actually keeps me from driving and by extension myself and others safe. I don;t say that because I think I would have gotten road rage had I continued driving autism meltdowns and rage are two separate things and I don’t think I was ever at risk of road rage.

I am generally comfortable with the fact that I don’t and as far as I’m concerned can’t drive. I take public transit and that for the most part works for me. I have however noticed that other people seem to have a big problem with it.

As someone who almost exclusively relies on transit to get around, I have at times been both a critic of the system and an advocate for better service. This was especially true when I was living in Regina because the transit system there is truly awful. It doesn’t run nearly often enough, the routes are not integrated well so it can take over an hour to get somewhere you could drive in under ten minutes. Regina Transit also has gaps in service, there are places (like the airport) buses just don’t go. They also run a very limited service on Sundays and often don’t run at all on holidays.

All of these things were problematic to me. I couldn’t consider a job at the airport because the bus doesn’t go there. If I was working on a Sunday, I had to make sure my schedule fit within the limited scope of the Sunday service schedule. Working on a holiday was basically impossible, even though I would have loved to take advantage of the higher pay.

I am also completely aware that poor public transit isn’t just a disability issue. It also has environmental repercussions and disproportionately hurts the poor.

Because transit was how I got around in my daily life. I would bump up against these issues and I would complain about them. Unfortunately people almost never agreed or sympathized with me. Instead I would get asked “well if transit is so bad, why don’t you just get your license?”

Here is where people treat visible and invisible disabilities differently. If I was clearly physically incapable of driving, I would never get asked that question. People might actually be sympathetic and start to think critically about the social ramifications of a terrible transit system. In this instance I’m specifically talking about the reactions of people I know. While I’ve definitely gotten the “just drive” response from acquaintances and strangers, I would never be so hopeful as to assume they would be sympathetic to issues of disability and transit. I’ve seen far to many people complain about wheelchairs on buses to be that optimistic.

These reactions come predominantly from family and friends. All they see is that I’m not physically incapable of driving. When I try and explain how uncomfortable and stressed driving makes me, I get brushed off. Even though I have long since been diagnosed on the Autism spectrum. They still come back with “everyone gets stressed sometimes, you just need to learn to get over it.”

It’s a clear case of people won’t deny what they can see (like physical disability) but will continue to misunderstand what they can’t.

These interactions are frustrating on so many levels. There’s the denial of my own experiences and reality. There is also the complete dismissal of the wider issues of poor transit. The big one that I really can’t understand is I’ve told them I feel uncomfortable on the road so why under those circumstances are they so comfortable with the idea of me driving?

I may be certain of my low risk for road rage, I am however not remotely so convinced of my ability to remain calm and focused. I may be able to stop at red lights or stop signs. I may know the protocols for a four way stop but I am less convinced of my ability to be prepared for the unexpected like children darting into the street. I don’t feel comfortable driving, so why are other people so comfortable trying to force me into that situation? It just seems like a recipe for disaster to me.

I live in Toronto now and the transit system is much more comprehensive though far from perfect. Here however, using transit as your primary way to get around is common and acceptable. Here I can criticize the transit system and have people nod in agreement and join in with their own complaints.

I would however like to be able to visit my home town without having the transit system tell me where I can go and when only to have my own friends and family tell me that it is my own fault when I complain.

 

Choosing Not to Disclose a Diagnosis is Not Giving in to Shame

Posted by crippledscholar on

So in my last post, I talked about my friend Navi who successfully challenged the documentation requirements to acquire academic accommodations for Mental Health at York University. She won that fight and has been receiving some media interest as a result. In my last post I did two things. I clarified some of the common misconceptions I was noticing in commentary around the media stories. I also criticized some of the media handling around asking questions about accommodations that reinforce prejudice.

Unfortunately one of the side effects of disability self-advocacy is that it inevitably comes along with backlash. As I was preparing that last post, it had already started but mostly consisted of comment trolls and the ill conceived and likely unintentionally poor interview questions. No sooner had I published it however, I became aware of this opinion piece by Heather Mallick in the Toronto Star. It can best be described as utterly ignorant and hateful.

Some of the article is genuinely incomprehensible with lines like

I myself dislike “disability,” especially in reference to temporary states of young people away from home, but I won’t harp.

Up until the word disability, I can follow, I disagree but I understand the words everything after that is word vomit. Is she saying that students away from home will fake disability because we are needy whiny millennials? No, but seriously, I’m not sure. Someone please explain it to me.

She also fails to fully seem to understand that just because a diagnosis is no longer required, doesn’t mean that medical documentation is also now optional. It’s not, you still definitely need it. So this idea that stressed out dishonest students will be flooding university accommodation offices, says a lot more about the author’s lack of faith in the medical profession than it with this hypothetical horde of fakers waiting in the wings to scam the system (please see my previously linked post for reasons why accommodations don’t necessarily benefit people who don’t need them).

She also shows a complete lack of understanding of how disabilities and the needs associated with them manifest themselves. She says, specifically regarding Navi and her request for a quiet separate exam space,

This puzzles me. Exam rooms are silent. And what if her smaller room became claustrophobic? Hard to predict. With each year, the smaller room will become more crowded. Perhaps exams could be written outdoors in the quad. No, grass allergies. Really? Prove it. Don’t have to.

Just to again reiterate, people still need medical documentation in order to be accommodated. Mallick also seems unaware that the policy changes that she is criticizing only apply to psychiatric diagnoses. So someone seeking accommodation for a grass allergy would still have to identify it.

The bigger point here is however that just because someone has one symptom that requires them to write an exam separately would mean that they are also claustrophobic. An argument which makes as little sense as Mallick’s choice to cite the satrical website The Onion. Let’s just pause to let that sink in. She cited THE ONION!

The article she referenced was mocking the over sensitivity of young people. Making it clear that she believes that Navi is lying and her desire to keep her diagnosis private is a cover for those lies. Her real beef appears to be with imaginary whiny youths who are out to get benefits that they aren’t entitled to.

She however cloaks this in pseudo-activism, claiming that keeping diagnoses private is to fall back into supporting stigma and shame. In a weak attempt to support her argument that mandatory openness lowers stigma she references the existence of the Bell “Let’s Talk” Campaign. She just mentions it but fails to elaborate how it proves her point or is even applicable in this situation. Keep in mind that Bell is a media company and not a Mental Health Organization.

She also advocates for an openness about diagnosis that has never been required of students, arguing that students should disclose to their professors. Disclosure has only ever been required to Disability Services. Students are then given certified letters which contain no medical information to take to faculty. This is done precisely because there is an understanding that an ignorant professor might be prejudicial if they have preconceived ideas about a specific condition. Yet, Mallick says,

The legal requirement that a stigmatizing diagnosis be a secret from helpful universities smells of mould and asylums.

In fact, professors may make bad guesses about what ails a student — humans are like that — and that doesn’t help build an intellectual bridge.

Again I clarify. This policy change does not forbid anyone from disclosing. They are welcome to if they choose. It simply removes the requirement that they do. Yet Mallick expects students to submit to and cater to their professors ignorance. Something they have not been required to do before the shift.

Even though I know she doesn’t deserve it, I am now going to give Heather Mallick the benefit of the doubt and explain why having the choice not to disclose a diagnosis is so important.

  1. Despite the existence of campaigns like “Let’s Talk” stigma is still rampant and people should have the choice to minimize the likelihood that they will experience it.
  2. Psychiatric diagnoses often come with a laundry list of possible symptoms, which are not all applicable to every person given a particular label. Withholding a diagnosis forces disability services to deal with the individual, rather than slotting them into a box based on a textbook definition.
  3. Yes even trained professionals who work with disabled people are not immune to stereotyping. Taking the focus away from the diagnosis can help negate that. Remember a medical professional has already signed off on the accommodations. They are not and should not be subject to secondary approval just because a counselor knows a thing or two about a certain condition. People are more complex than a DSM list of symptoms.
  4. Some people don’t like the association with labels. This should not be mistaken as evidence of shame or denial of difference but rather a rejection of the medicalized way they are viewed. They may share or “Talk” a Bell would have them do about their experiences in a less pathologized way.
  5. It’s about choice and respect. People should have control over their medical information. As Navi said in her interview with Matt Galloway. She just wants the same treatment in university that she would get in the workplace where again diagnosis disclosure is not required.

I’m sure there are many more reasons to respect privacy and I invite people to share them in the comments.

Ultimately, the determination of what lowers stigma and betters the lives of disabled people should not come from newspaper columnists but from the people who have affected by that stigma.

So You’ve Made Progress in Expanding Rights to Academic Accommodation…But Do You Really Deserve It?

Posted by crippledscholar on

It is the day of my final exam, I have figured out the location for my alternate exam space. I show up early and wait for my invigilator. It is 15 minutes before the exam. 45 minutes later, they have yet to arrive. 5 minutes after that, the invigilator finally shows up, they’ve forgotten to pick up my exam from the department. I start my exam an hour late.

At a different exam, I sit in a small conference room across from my invigilator. I am concentrating on my exam. Across the table, the invigilator opens and starts eating a bag of chips. The bag crinkles, there are audible chewing noises. I try and focus on my exam.

I am writing a geology exam with two other students in an alternate space. We are seated at the same table as we have to share a single set of mineral samples. About half an hour into the exam we realize that we are missing a needed sample. Our invigilator is M.I.A.

These are just three of my experiences taking alternate exams during my undergraduate degree. They are pretty representative of my overall experience of not taking exams with the rest of the class. Sometimes getting academic accommodation is a catch-22, particular if you are writing exams separately.

This however does not diminish the importance of being able to access academic accommodations if you need them, however the process of getting them is daunting and the delivery often spotty.

This is why the new changes around accommodations for mental health disability at York University are so important.

York University PhD student Navi Dhanota (full disclosure: she’s a friend of mine) just completed a two year human rights complaint against York’s Counseling and Disability Services to be able to access academic accommodations without having to disclose a specific DSM diagnosis.

The policy change has been getting media attention in Toronto which in turn has garnered public comment (yes I know “never read the comment”). some of the comments indicate a lack of understanding of, the policy change, what it entails and how it came about.

  1. York University is far from the only university that has policies that require students to provide a DSM diagnosis or psychiatric label to qualify for accommodations. (though hopefully the shift at York will spark change at other universities)
  2. York is not the first university Navi has experienced this policy. However, York is the only university where she sought change through the Human Rights Code.
  3. The change in policy does not mean that people can simply self-identify as having need for accommodation. They still need medical documentation of need for accommodation but the specifics of the diagnosis can be kept confidential between the student and their physician. So the people complaining that fakers will be coming out of the woodwork can shut-up already.
  4. This policy change only applies to students seeking accommodation for psychiatric diagnosis. Students seeking accommodations for physical disabilities, learning disabilities and chronic illness must still provide specific diagnosis to receive accommodation. No that isn’t fair and it remains to be seen if it will require another Human Rights complaint to fix that disparity or if York will be proactive in fixing it without outside intervention.

Now we move on to why I shared those awkward and unfortunate alternate exam stories because I’m going to address the trolls. The people who have been using this as an opportunity to rail against the existence of accommodations in general. The most common complaint being “No one likes writing exams in packed gymnasiums and everyone would probably benefit from not having to do that”.

Normally, I wouldn’t spend taking them on but their sentiments were echoed by CBC As It Happens radio host Carol Off in an interview with Navi. The interview is only 6 1/2 minutes and Off waits until the very end of the interview to throw out the “but everyone hates gymnasium exams” comment right at the end, effectively making Navi defend the entire structure of academic accommodations in less than a minute. An impossible feat, though Navi managed to remain calm under the ridiculous expectation.

By bringing up this question Carol Off legitimized (though by no means invented) the public skepticism that exists any time a disabled person gets an accommodation. By providing so little time to the discussion, she all but guaranteed that the defense would be weak and therefor actively undermined the validity of the system.

I am going to take some time now to address some of these issues. I will touch on the importance of accommodations and the varying arguments around how they are distributed but I am going to primarily look at why the question from Off and the internet trolls is harmful and reinforces prejudice against disabled people. It’s the cousin of the “but what about the fakers?” Argument that has been rampant in the online comments about this story.

First let’s look at accommodations and the differing views around them. They range from the current and most common system (I’ve personally navigated accommodation bureaucracies at three Canadian universities). This system involves offering the bare minimum legally required with as many safeguards (extensive documentation and medical practitioner involvement) possible. The fear of the faker or system abuser is so high that many universities require a physician to sign off on each and every accommodation even when the condition or diagnosis has been disclosed and medically confirmed. Even if the accommodation is extremely common or universally needed by people with that condition. There is no good faith. The assumption is always that people are lying about their needs unless it is corroborated by a doctor.

Some disability activists advocate for a radical shift in the disbursement of services which addresses the mentality of “but we all hate gymnasium exams”. They argue that everyone should have access to accommodations regardless of disability status. Functionally this is untenable in a lot of ways particularly in terms of offering everyone alternate exam spaces. It also ignores that not everyone would benefit from certain accommodations and may actually find them detrimental.

Consider the accommodation of having a note taker. While people’s reaction to my utilizing a note taker during my undergraduate degree generally boiled down to “well everyone would do better if they didn’t have to take notes”. In reality this is more a knee jerk reaction to someone getting different treatment rather than better treatment. Studies actually show that when students take notes they tend to do better than if they don’t, even if notes are provided to them. So no, not everyone actually benefits from a note taker. It might actually harm academic outcomes for most people. My inability to take notes puts me at a disadvantage which is partially rectified by being able to have them provided for me. I will never be able to benefit from the academic advantage of taking my own notes.

There are accommodations that I would love to see universalized like access to speech to text software and good text to speech software. As it stands, the first is not an accommodation, it can be used by everyone at their own expense. In the case of the latter, universities might provide textbooks in alternate formats (something copyright law will bar the universal distribution of) but access to screenreading software is not provided. This software is very expensive so students who require it have to wither pay out of pocket or navigate the maze that is technology grant applications.

Many more people than those who require these programs for reasons of disability and expanding demand an access would likely bring the cost down to more manageable levels.

When people, particularly people with a public platform like Carol Off voice opinions (even in the forms of questions) that boil down to “everyone’s life is hard, why do you deserve different treatment?” it fundamentally erases the reality of disability.

Are there fundamental problems with how universities are run that hurt all students? Yes. But that is a separate issue from the systemic disadvantage experienced by disabled people. The two things should not be conflated. Doing so only further marginalizes disabled students.

At a university level, issues like crowded exams and the large class sizes that contribute to them are issues of under staffing. They can and should be addressed. The thing is even if they were, students with disabilities would still be disadvantaged in universities. Alternate exams exist not only for students who can’t write in gymnasium environments. Even a small exams can be to much for some students.

Accommodations aren’t about catering to a student’s preferences. They exist to rectify actual measurable disadvantages not experienced by other students. Constantly framing the conversation around nondisabled people and what they’re not getting ignores the fact that even though the delivery of post-secondary education is flawed, it was set up with them in mind. Accommodations aren’t perks or extras. They exist to level the playing field. To alleviate a structural imbalance.

Getting people to this understanding is crucial to help start alleviating some of the frankly overwhelming discrimination and prejudice, disabled students experience from their nondisabled peers and the university as a whole.

If the sheer rage that some people express when accommodations for disability are mentioned is any indication, people seem to view accommodations as this Utopian land of privilege. It is in reality far more often a quagmire of hurdles and stigma.

My general experience with accessing accommodations has been one where the response often feels like “ugh, I guess I’ll do this, if I have to”, that is if a professor doesn’t ignore you outright (see here for more information on that).

Add to that, the fact that accessing accommodations beyond the complex bureaucratic requirements for extensive documentation is deeply stigmatized. It is shrouded in secrecy and students are often made to feel guilty or ashamed for utilizing them.

After a classmate discovered I had a note taker (a service that is supposed to be confidential but is often not), I was told that I shouldn’t be allowed in university.

Without giving the full story about academic accommodations and their function, it is irresponsible to then question their validity more so when the respondent isn’t given adequate time to respond and has their argument be artificially weakened by the circumstances of the question. This legitimizes the already existing stigma.

As mentioned above, academic accommodations are often delivered in a piecemeal and less than respectful manner. The system is already flawed enough without adding to the existing skepticism we recipients face not only from the universities that deliver those services but from our peers as well.

Disability, Gender, Sexuality and Hair

Posted by crippledscholar on

When I moved from my home in Saskatchewan to Toronto to study for my Masters degree, I didn’t cut my hair. This was an act of defiance.

That may seem like an odd thing to say as a straight cisgender woman and yet it’s true.

The gendered world in which we live often says that for women to be beautiful, they should have long hair, so long hair would seem to be more of a capitulation to gender norms than a radical act. There are strong societal ties to how people view women and hair.

Long hair is feminine and beautiful whereas short hair is not, it supposedly veers into androgyny and there is a stereotype that women with short hair are lesbians. These are stereotypes that should absolutely be challenged but it is impossible to argue that society hasn’t internalized them and it changes the way people are treated.

Here’s where it gets complicated for me, I’m disabled. I have very little (if any) fine motor control over my left hand. As a result I have difficulty styling my own hair (If I can do it at all).

Disabled women’s hair is just seen as yet another inconvenience for caregivers and at times we aren’t even given a choice around our hair length and style.

As a young child, my hair was kept very short. I definitely had to rock the mushroom cut that was so common in the early nineties. When I became old enough to voice an opinion on my hairstyle, my mother let me grow it out but with the disclaimer that I was not to expect her to style it for me.

Requests for pony tails or braids were more often than not met with exasperation and refusal. On my own, I could at best pin the bangs out of my face.

My attempts to pull my hair into a pony tail were utter failures. I had to deal with loose long hair in all weather and environments, from walking down the street to hiking up a mountain. My long hair might have been beautiful but it was a source of inconvenience and discomfort.

So it is hardly surprising that at around 12 years old, I cut it all off. I had so little personal experience of girls with short hair, I provided my hairdresser with a photograph of a boy as a guide. The hairdresser spent the entire cut, lamenting the loss of my beautiful blonde hair. The message I received was clear. I was making myself uglier.

I let my hair grow out again. Basically, my youth was a series of hair extremes. I always let it grow really long, would get sick of it then cut it to a short pixie all at once. The hairdresser’s grief over cutting it, repeated each time.

When I cut it short again in high school, I started getting back handed compliments from my peers, “oh Kim, your hair is so cute…but you know boys don’t really like girls with short hair”. So in addition to feeling less attractive, I was also certifiably undesirable as well. So I grew it out again.

At fifteen I traveled with my church’s youth group to a youth gathering in BC. I had long hair and no way of controlling it myself. Some of the other girls were kind enough to put it in a pony tail for me, so that I could be more comfortable in the summer heat. For the first time in my life I started to think that occasionally asking for help wasn’t a complete inconvenience to people around me.

That all ended when we arrived at the gathering site at the University of British Columbia and I suffered a shoulder injury. I was separated from my peers because, they were participating in the conference. I was alone with one of the parent supervisors after having been taken to see the nurse. Fresh off my positive experiences with my peers I asked her to help me put my hair in a pony tail expecting a positive response. Instead she said no. I was disappointed but accepted it. Later she came back and berated me and told me that if I was incapable of doing something so simple for myself than I had no hope of being an independent adult saying she was shocked that I had even asked her. I went back to my dorm room and cried. Yet I kept my long hair throughout the rest of high school. I had however learned that long hair and independence were mutually exclusive.

After high school I participated in a youth volunteer program called Katimavik which had (until the Conservatives defunded it) Canadian youth travel around the country doing volunteer work for nine months. It was the first time I was going to live independent of family. The day before I caught my plane, I went to the salon and cut off all my hair. I didn’t grow it out again until I got back.

The next time I knew that I was going to be traveling for an extended period of time, off to the salon I went.

In my twenties I experienced some severe illness and long periods of unemployment. This stress led to the sensory symptoms of my autism going into overload. Basically as soon as my hair got long enough to cover my ears I couldn’t handle it. As a result, I consciously maintained short hair for a few years. Each time I went to the salon, I risked dealing with sexism and straight out homophobia. I was told “this will make you look like a boy” “what will your mother think?” and the golden standard of gender policing “you know boys don’t like girls with short hair”. I changed hair dressers and salons twice during this time.

After my health stabilized, I grew out my hair again. I kept it long through the rest of my undergraduate degree. During that time I spent hundreds of hours and tens of thousands of attempts figuring out how to get my hair in a pony tail.

I would try and fail over and over until the cramping in my left hand got so bad that I would be forced to stop. It took years. I did eventually figure it out, though it still takes me several attempts to do it successfully.

So when I moved to Toronto for my MA, even though I knew I would be away for at least a year, I didn’t cut my hair. I kept it long for the duration of the degree. Each morning I would spend several minutes forcing it into a pony tail so that it wouldn’t get in my way. My wrist would cramp but I would struggle on. It got to the point that I hated my hair but couldn’t bring myself to cut it. It felt like giving in.

I didn’t cut it again until I finished my degree and a lack of employment prospects forced me to move back home and be the stereotypical millennial living in their mother’s basement.

This time when I got it cut, I know that I have the hairstyle that I want. I got it because, I like it aesthetically though the convenience and comfort of short hair cannot be denied. This time, I was lucky in my hair dresser, she just double checked that I understood the drastic change and was sure it’s what I wanted. There was no judgement or impromptu funeral for the lost hair.

And yet, despite loving my hair I know that I do not exude femininity. A friend even complimented me on my “beautifully dikey hair”. She’s queer and did genuinely mean that as a compliment and I took it as one but it does serve as a reminder that I am not necessarily visually identifiable as either straight or cis.

Nondisabled feminists fight gender norms because they are both false and limiting. For disabled people though, they are additionally insidious. When we don’t have control over our outward appearance we are by default desexualized. As a teenager it wasn’t about being mistaken for being gay. No one even considered that my hair might be an expression of gender identity. It really was an erasure of my sexuality as a whole. Short hair just exempted me from the dating pool. It cannot be overlooked that the cultural tendency is to view disabled people as universally asexual which serves to remove them from the sexual spectrum altogether. We are not just dealing with gender normativity but ableism as well.

Even though I am happy with my hair probably for the first time in my life because I truly chose it for myself. I cannot help but be frustrated with how gender norms coupled with ableism means that my sexuality is so easy to erase and that I felt the need to suffer discomfort for years in a vain attempt to appear feminine. It is sad that it is so recent that I really started to think about how I wanted to look and not how other people would react to how I look.

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Image description: Black and white photo of me (a 29 year old woman) with a disconnected undercut. shaved on the sides and back with top left longer and styled to be standing up.