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?

 

 

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The Good Doctor Lives Up to Expectations as Stereotypical Inspiration Porn

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 the new ABC drama The Good Doctor premiered. I have had my concerns about the show ever since I first saw the trailer in May. All of my concerns have now been validated.

The show’s portrayal of autism is deeply stereotypical and like so many portrayals of autism centres around an essentially magical autistic white man. It is particularly apt that today Disability Scoop published an article (which does not mention The Good Doctor) about a study which found that Hollywood routinely creates overly stereotyped and unrealistic autistic characters.

The Good Doctor’s Dr Shaun Murphy fits that description to a T. He is basically a walking, talking embodiment of the DSM diagnostic criteria. He like so many of the autistic characters before him has the characteristic Hollywood autism accent. He is sensitive to noise and is socially awkward which is played off as an endearing innocence but serves mainly to reinforce the idea that autistic adults are effectively children.

He is also a savant, because of course he is. Autistic characters cannot take centre stage in mainstream media unless they fit into either an over pitiful role or as in this case an essentially impossible level of exceptionalism.

And let’s be clear, the character is impossible. He isn’t just a savant (and how many times must I repeat that savantism is rare) his skills are inhuman. It’s not just his ability to visualize the entire human vascular system and apply it to the medical realities of different people (though I admit that’s a new one that I haven’t heard before), his awareness is absolute. He misses nothing. He identifies problems that are not only easy to miss but also that will likely be missed. He does this while not even appearing to be paying attention.

Clearly, Hollywood hasn’t gotten the memo that savants are humans and are fallible.

Despite this, Shaun is also perceptive. This is played out as great wisdom. He clocks and calls out his supervisor’s arrogance.

Show creator David Shore makes no secret of the fact that Shaun is explicitly intended as inspiration porn.

“He’s a catalyst for change among the other doctors. His different way of looking at the world will, I think, inspire them.”

Shaun, like so many disabled characters before him, does not exist for himself but rather for other people.

I remarked in my earlier piece on the show’s advertizing that “[t]he most believable part of the trailer is the scene where a room full of people try to justify discrimination”. What was true of the trailer was more or less true of the show. Much of the conflict was contrived and unbelievable.

Early in the episode, Shaun witnesses a child injured by falling glass in an airport and uses his magical powers, *cough* no I’m sorry I meant “savant” skills. to correctly identify major issues to save the child’s life.

Of course, it arises that Shaun must perform an emergency procedure and requires a knife. But he’s past security in an airport and no one seems to have one. Oddly despite it definitely being several minutes since the falling glass incident (which was spectacular and unlikely to go unnoticed) and a crowd has gathered to watch Shaun work, all airport staff seem completely unaware that it has happened and that there is a medical emergency.

Shaun is somehow able to figure out how to not only MacGyver medical equipment and plot out meticulously where he’s going to get everything but when it comes to asking a TSA agent for a knife, he can’t clearly articulate why he needs it. The TSA agent refuses (again how is literally no one affiliated with the airport aware that a child is dying?), Shaun decides to steal the knife and run. Of course, he’s chased and tackled, luckily within eyesight of the huge crowd–that again no one from the airport staff seems to have noticed–and the child’s distraught parents. Shaun is allowed up–having apparently suffered no particular anxiety from having been tackled–and saves the child.

Well, at least until they get to the hospital and he determines that the child needs an echocardiogram but can’t express why the child needs it so is ignored. He tries to make a run for the operating area and is kicked out of the hospital. He then futilely tries to regain entrance instead of calling the head of the hospital, who he knows and is the person championing the idea of giving him a job.

While it is true that autistic people can struggle with knowing what to do in situations of high stress, it is something we can learn. It is also something that a doctor needs to be able to do to be effective.

Quite frankly between Shaun’s inconsistent ability to basically be either BBC’s Sherlock–capable of complex multistep planning–or to try and run past security staff at the first roadblock (there is no in between) and people constantly ignoring him, I’m utterly shocked the kid didn’t die (I could I suppose have included a spoiler warning but does the outcome really surprise anyone?). That’s the magic of television folks. In real life that kid is dead six times over.

The only part of the character that I did identify with was his tendency to go silent for socially unacceptable amounts of time in response to questions he didn’t immediately know the answers to.

Frankly, that’s not enough of a consolation.

Dr Shaun Murphy is fundamentally the quintessential supercrip. He does not resemble any actual autistic people even if as a result of him being a walking DSM entry, people find tics in common. He entirely reinforces the idea that to be both disabled and acceptable you must also be exceptional.

I fully expect the show to continue in this vein, with Shaun’s coworkers and patients gaining life-changing insights from their very own magical white autistic man.

I’m still waiting for stories with disabled characters who are both more realistic and whose lives exist for themselves and not for the Hallmark card insights that they offer others.

But since this is what people actually seem to think passes as positive portrayal* I fully expect to be waiting a long time.

Here’s hoping for early cancellation and that this doesn’t get eight season’s like David Shore’s previous foray into supercrip doctor drama, House MD.

*I refuse to consider anything that does not actually involve the group being portrayed representation

 

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#KiehlsxAutismSpeaks: Buying Face Cream won’t Help Autistic People & Neither will Autism Speaks

 

Matthew McConaughey

Image Description: A screenshot of Kiehl’s Autism speaks campaign video. Actor Matthew McConaughey is on the right. While text reading “with every share Kiehl’s is going to donate $1 to its Autism Speaks campaign   * up to $200,000 benefiting Autism Speaks”

 

There is so much wrong with the #KiehlsxAutismSpeaks campaign that I hardly know where to begin. The campaign has two components, the first is a consumer component which donates a portion of sales to Autism Speaks. The second is a social media campaign which raises money based on the number of shares a video featuring Matthew McConaughey gets on Twitter and Instagram.

 

There are issues with the messaging of the ad. There are issues with the methodology of the campaign self.  There are issues with the fact that the campaign is linked to Autism Speaks which is a very controversial organization within the autistic community.

The ad itself falls into the trap of so many public charity fundraisers for disability. It utilizes problematic language by defaulting to person first language when autistic people tend to prefer identity first language. There is also the focus on autistic children. This is an issue for a couple of reasons one of which ties into the complex connection to Autism Speaks. The other is simply the fact that so many of these campaigns focus on disabled children and tend to forget that those children grow up. This creates a real and serious service gap which tends to leave disabled adults without resources.

The connection with Autism Speaks makes it worse because as a result of their history of minimizing not only the experiences of but even the reality of autistic women, there is a real trend of late diagnosis or non-diagnosis. This means there are countless autistic women who did not have the benefit of services as children and who have to learn to navigate an autism diagnosis as adults with little or no support.

Autism Speaks did this as a result of the historical and inaccurate belief that autism is more common in boys. They created an entire campaign around this misconception. One of their best-known campaigns is likely the Light It Up Blue campaign which was designed specifically to recognize that false reality. Blue was meant to recognize that boys were more likely to be autistic. Despite new and continued research showing that women are systemically underdiagnosed with autism, the campaign continues. Also, focusing on autistic children alone ignores the generations of women who were not diagnosed because autism was not considered to be an option.

Charities, in general, have a tendency to focus on children because they are perceived to be more palatable than their adult counterparts. This has long term consequences in major gaps in access to services and resources by disabled adults. It also leaves a cultural gap where disabled adults simply don’t appear and are thus not expected to actually show up in society.

So charitable giving is often fraught with problematic messaging in general. Autism Speaks however, is more problematic than most. This is because it is both one of the largest “autism advocacy” organizations and it is also deeply unpopular with autistic people to the point that some have labelled it a hate group. The Caffeinated Autistic has a pretty good run down of many of the serious concerns that autistic people have regarding Autism Speaks.

Some of the primary concerns include the generally low percentage of funds (only 3%) that actually get spent annually on actual services for autistic people and their families. So, the Kiehl’s video campaign if it reaches the maximum 200,000 shares will only really amount to $6,000 going to actually helping autistic people. 63% of Autism Speaks’ budget is spent on fundraising and raising awareness.

The kind of awareness that Autism Speaks has raised in the past is deeply troubling. They released a video which I really demonized autistic people and suggested that they invariably ruined the lives of their families. The video tries to make the distinction between autistic people and autism but in reality, autism is not something that is or can be separated from the person.

 

*video transcript at the end of this post

They also produced a documentary called Autism Every Day (link is not to the video but there is a link to the video in this article) which featured a clip of a woman describing her fantasies about killing herself and her autistic child while that child was in the room.

Autism Speaks has a track record of promoting dehumanizing narratives around autism. They also have a history of not having any actually autistic people in positions of authority within the organization (this has changed somewhat recently). They have made some cosmetic changes to their messaging recently but they still largely benefit from their old messaging and they do not challenge or cut ties with individuals and organizations which fundraise and “raise awareness” on their behalf (I wrote about this previously).

So what kind of awareness is this campaign actually raising? I would argue none at all. We are well past the point of being able to count simply acknowledging the existence of autism and autistic people as meaningful awareness. People know that we exist. What we need now is for people to actually engage with creating a culture and a society that actually makes our lives better. As autistic writer, Sarah Luterman points out that Kiehl’s describes their special face cream (which is just a rebranded version of a product they already offered) as “a daily face moisturizer to promote autism awareness.” Luterman then astutely points out “[t]he site does not elaborate how exactly a face moisturizer would promote awareness of anything.”

Hiding behind a celebrity face and making the fundraiser so effortless also endorses uncritical engagement with a very problematic charity. People simply assume that the charity is good because a cosmetics brand and Matthew McConaughey told them so. It does not suggest that they actually engage personally with Autism Speaks in any way or engage with autistic people themselves. It may be a very effective way to raise money but it is a particularly useless way to raise awareness and it is a potentially harmful way to raise awareness. It emboldens an organization which is unpopular with the people it purports to speak for. It is infinitely ironic that an organization which calls itself Autism Speaks has spent the vast majority of its existence speaking over and silencing actual autistic people. In fact, we have our own organizations and engage in self-advocacy. The Autistic Self Advocacy Network and the Autism Women’s Network are too great examples of organizations run by autistic people for autistic people.

This campaign tells people that they can benefit a marginalized group simply by buying something. Not through any actual engagement with that group. Which reinforces ideas of separateness and the continued proliferation of false ideas around autism and autistic people.

It’s a fundamentally dehumanizing use of a saviour narrative which positions autistic people as a group needing to be saved by nonautistic people.

It’s also that truly ineffective approach where people buy something and it supposedly helps a charity. Which presents a very self-serving narrative of solidarity. “Buy a face cream that you’ll benefit from and help someone without doing anything else” That sort of campaigning particularly when trying to help a marginalized group of people is particularly ineffective because for meaningful change to occur in raising the status of an oppressed group actual engagement is needed. This is the opposite of that. This tells people that they can help a marginalized group at a distance without any meaningful action. It maintains the “othering” of autistic people.

Many autistic people have spoken out of about the campaign particularly on Twitter where the Matthew McConaughey video is being widely shared. There is even a change.org petition asking Kiehl’s to reconsider its partnership with Autism Speaks. I would add my voice to those autistic people who are asking you not to support this campaign or Autism Speaks in general.

This kind of ad campaign doesn’t raise awareness so much as it reinforces the “otherness” of autistic people. It suggests that non-autistic people can be the helpers and saviours of autistic people simply by buying face cream or sharing a video on Twitter or Instagram. It fundamentally does not in any meaningful way raise awareness about autism or autistic people.

I would ask that people take meaningful steps to creating a culture and society that is accessible to autistic people and which does not require us to be either cute children or threats to the happiness of everyone around us.

If you want to actually help autistic people and to actually be aware of us, I would suggest the following autistic activists on Twitter (just search for #ActuallyAutistic), reading autistic writers and actively avoiding and speaking out against campaigns which supports harmful organizations and which present sharing the video and buying face cream as meaningful engagement.

 

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*transcript courtesy of the Autistic Self-Advocacy Network

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?

 

 

 

 

My Son’s Swim Coach’s Second Cousin’s Wife has a Student With Cerebral Palsy: The Disability Anecdote

The disability anecdote is something that I’m sure most if not all disabled people have faced.

At its most basic it can simply be someone, having discovered they are in the presence of a disabled person who feels compelled to create some bizarre sense of false common ground.

The scenario generally involves a nondisabled person finding out that you have a particular disability.Perhaps as a result of casual conversation but more likely because they have asked an invasive question. One that has very likely been phrased some thing like this,

“I’m sorry. I don’t mean to be rude but what wrong with you/your [insert visible characteristic of disability]”

If the disabled person is cooperative or just doesn’t want to deal with the backlash of refusing to answer and actually obliges the questioner with their diagnosis it is not uncommon for the nondisabled person to then respond with.

“Oh my [insert vague and often several degrees separate aquaintance] with that/some other disability that they perceive to be similar but probably isn’t”

They then look at you expectantly and I for one still have no idea what to do with these interactions. Do people really expect to be congratulated for being able to come up with a single example of another disabled person that they or just as frequently someone they know has encountered at some point?

Are they trying to tell me that I am not alone?

Are they trying to tell me that they are not completely ignorant of disabled people?

If the latter, they are failing just through their approach. Yet, nondisabled people seem to love to share these anecdotes which prove nothing more than how invisible disabled people are to them. Seriously, considering the percentage of the population that is disabled (generally measured around 20%) these anecdotes really just show how far we have to go in terms of visibility and public access.

These instances are troubling but they are also a more benign (on a very malignant spectrum) version of the disability anecdote.

These anecdotes also come up in opposition to disability rights activism. They most often come from nondisabled people but are also offered by disabled people whose disabilities may differ from that of the people doing the advocacy. These anecdotes generally go like this,

Disabled person: “This action/image/policy is particularly harmful to people with X” (often followed by a list of reasons and evidence of that harm)

Nondisabled person/person with different disability: Well I know someone with X and they are perfectly fine with it”

These interactions are infuriating because they are entirely premised on the idea that the opinions of disabled people can be trumped by the mere mention of a possible counter opinion by a different disabled person. This false idea also appears in conflicts that occur between disabled people–“well I’m also disabled and I don’t agree with you so…”–but in those cases, they can be challenged or the detractor can be asked to justify or explain their position. When the hypothetical disabled person (and yes I often doubt they actually exist) is just an anecdote, the argument hinges entirely on the fact that there exists an alternate viewpoint not on whether that viewpoint has merit or can withstand questioning or scrutiny.

The implied rightness of this hypothetical opinion tends to be based entirely on the fact that it continues to allow the maintenance of the status quo. A disabled community asks for change and someone pops up to say that no change is necessary because “they know someone with that disability”.

An absent disabled person whose opinion cannot be challenged or even confirmed and yet is expected to be not only believed and respected but adopted.

It is particularly frustrating when these anecdotes come from parents who use their disabled children as weapons with which to beat disabled adults.

In these cases, I always wonder

Does the child actually think this?

Is the child old enough to think critically about this issue?

Regardless of age, where and from whom is the child learning about disability as a lived experience?

Does the child have access to alternate opinions or is it safe to assume that they may be parroting opinions on disability that they have been presented by their parents and broader social group?

Does that social group include people with disabilities?

I have these questions because as a disabled adult my understanding of disability has changed drastically from what I thought as a child. I fully acknowledge that many of the views I held back then were toxic and built on internalized ableism. I simply did not have the critical thinking skills to do anything but accept the worldview I was offered by the almost exclusively nondisabled people around me.

And yet, disabled children are effective weapons against disabled adults because it is not acceptable to publicly question them. You cannot reasonably ask parents who claim to speak on behalf of their children to produce them for confirmation and clarification.

Even when the anecdotal disabled person is an adult it’s considered inappropriate to question the validity of their argument too closely. This is a direct result of the paternalistic ideas around disability that society holds. You are not supposed to overtly and publicly challenge disabled people even if you yourself are disabled. It is often perceived as an unreasonable attack.

So anecdotal disabled people continue to be an effective weapon against calls for systemic change. They may not be effective at changing the minds of the disabled activists their hypothetical views are used to oppose but they are popular with those who do not want to change. Those people can be comforted that they need take no action. That they need not interrogate the way they think about disability.

I see these anecdotes in all their shades so frequently that I also wonder, how often am I being used as precisely that anecdote (because odds are that I am) and by whom? What views are being attributed to me when I’m just someone’s neighbour’s second cousin’s wife’s former swim student with cerebral palsy/autism?

 

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Undesirable: Toxic Romantic Dreams, Disability, Sexuality and Relationships

sexy ISA

Image Description: A stenciled modified image of the International Symbol of Accessibility, A presumably male stick figure in a wheelchair being straddled by another stick figure who is presumably female because of the addition of a ponytail hairstyle.

CW: This post contains discussion and descriptions of sexual harassment, violence and bullying

Considering the Kathy Lette article in the Daily Mail (which I wrote about here and Carly Findlay wrote about here). I want to offer my own narrative of disability and sexuality, a narrative that isn’t driven by a parent or other third party.

It is often said that disabled people are perceived as nonsexual and this is certainly the experience of some people. I previously wrote a response to this New York Times piece Longing for the Male Gaze. As problematic as I found the author, Jennifer Bartlett’s romantization of sexual harassment, I do understand it. While I do not and never shared that particular longing. I do understand the creation of problematic desires and fantasies created around cultural expectations of romance and relationships. My personal experience, however, was not so much marked by being viewed as nonsexual but rather simply undesirable.

In fact, my sexuality was not only acknowledged it was used as a weapon against me.

For as long as I can remember I have been excluded. It was the first form of bullying that I experienced as a child. Starting in kindergarten and continuing through to the end of high school. While that exclusion in those very early years was certainly not tinged with romantic rejection—we were all too young for that—it set a precedent for my being denied even friendly personal relationships. It created a deep desire within me for inclusion and acceptance.

As I got older the bullying became more direct and aggressive. From about grade six onward, harassment from girls in my class often contained aspects of sexual humiliation. From being cornered at my desk and being told that if I wasn’t already a lesbian I would be within a year to mocking me when they realized that I didn’t wear a bra.

As a physically disabled autistic person, bras have been a source of stress since I started wearing them. They are often inaccessible and more often uncomfortable. Yet, within days of the first comment about my lack of bra (I really didn’t need one), I started wearing sports bras (the only bras I could stand to wear at the time) just to stop the comments.

Eventually, the bullying turned to my relationship status (or more accurately my lack of one). The girls first dropped a note off at my desk which said: “Maybe if you got a boyfriend, you’d have more friends”. They later cornered me to deliver this message in person. I clearly learned that being in a romantic relationship might lead to broader social acceptance. I was, however, unable to acquire the boyfriend necessary for this entrer into social acceptance.

In elementary school, I was told I needed a boyfriend to be socially valuable. In high school, that message continued but it was also clearly accompanied with the message that no one would ever want me.

The very idea that someone might be interested in me was unthinkable and the source of much amusement for my classmates. In grade 9 one of the girls’ favourite torments would be to try and determine who I had a crush on. They used whether I blushed as evidence—I am very pale and blush easily—they got a lot of amusement out of embarrassing me in front of whatever boys happened to be present.

In high school, the boys joined in this abuse. It started with my being mock proposed to repeatedly to the uproarious laughter of the audience.

It culminated into an incident in grade twelve where four boys cornered me alone in an empty classroom and explicitly described pornography in detail and mocked my embarrassment, telling me that if I couldn’t handle such information that no one would ever want me.

When I reported the incident to the school, I was told that I probably misunderstood what had happened and that the boys probably didn’t realize that they were bothering me. Because disabled women can not only experience sexual harassment, they can also have it minimized and ignored when it happens.

The idea of dating me was so much a joke and a repugnant idea to my male peers that having it suggested that they were dating me was an insult. A rumour started that I was dating my science partner (because if you so much as speak to a member of the opposite sex in high school, regardless of context something sexy must be going on). He blamed me for the rumours. He got so sick of denying them that he eventually found me alone in a hallway one day and screamed every insult that he could think of at me. There was a small justice in this instance because he didn’t see the health teacher come up behind him and witness the entire tirade. He was swiftly and loudly told off.

Through all of this, I was hyper aware of what made me different from the other girls who were not treated with the disgust and scorn that I was. Namely, the fact that I had cerebral palsy. I became hyper aware of anytime someone might have to come into contact with my left hand (the most visible aspect of my CP).

As a kid, I participated in a lot of group activities whether it was church youth group, brownies or that time I participated in French Youth Parliament (my French really wasn’t up to the challenge). As a consequence, I frequently found myself having to play ice breaker games. One that always seemed to be played was where everyone stood in a circle and grabbed the hands of random people across from you. You then had to twist and wind between people’s hands to try and return to an untangled circle.

Every time this activity was announced, I had a moment of panic because I always feared that when I reached my left hand out, that no one would take it. Though someone always did.

It wasn’t until I was 22 and in a cultural exchange program that some failed to take my left hand when circumstances dictated they should. We were dancing to Malian music in a line holding hands and when the Canadian group leader joined the line he grabbed wrist instead of my hand. I was startled and just blurted out “you can take my hand”.

“Are you sure?” he asked, he clearly didn’t seem to want to.

“Yes”, He did it reluctantly and soon decided to leave the dance.

These fears of being rejected in social settings and the continued messages that I was undesirable did not culminate in my wanting to be perceived as a sexual object like Jennifer Bartlett but they still left me with toxic dreams about relationships.

I didn’t dream of being seen as a sexualized ideal. I just wanted to be loved and included. Getting this attention from one person would have been enough. I was desperate for it.

The desire to be loved and wanted is not in and of itself dangerous or unhealthy but it can be when you’ve been told over and over again that you are undesirable and that this undesirability is also what makes you a social outcast. I was also clearly told that I was so undesirable that to be seen with me would have social consequences for anyone willing to be with me. This lead to expectations that any relationship I had would likely be isolated from the rest of the world. While I heavily romanticized this scenario as a teenager and young adult, I am well aware now that this kind of dream and the level of desperation that I had for it, left me at serious risk of abusive relationships.

This is evidenced by how I behaved around and responded to boys I had crushes on. I wanted so badly to feel loved, that I would pretty much develop a crush on any boy who would initially speak to me with any degree of kindness. When I was 16 this meant I was infatuated with a boy who was initially very charming but in reality, had a deeply misogynistic streak to him.

I can’t remember what precipitated the incident (I think I had said something sarcastic to him) but one day when we were rehearsing for the school musical he slapped me hard across the face. It was witnessed by the stage manager (another student) who came over ready to punch him for having hit me. I talked him out of it and while it was probably best that they didn’t get into a fight in the school gym, I wasn’t trying to de-escalate a fight. I was defending the person who had hit me. I still wanted him to like me.

I am not sure when exactly when I was able to start thinking critically about those toxic romantic dreams. I suspect it began after I actually found social spaces where I was accepted as a friend. This didn’t do anything to ameliorate my romantic prospects but I did finally have a space where my desirability as a sexual or romantic partner was not held up as necessary for social inclusion. A relationship was not a social status symbol and association with me was not cause for a person to be mocked.

The thing is that this didn’t really start to happen until I reached grad school. I was also in Disability Studies which attracts a disproportionate number of disabled scholars. In my master’s program, I was one of three people with cerebral palsy and there were many other disabilities represented.

This was huge in terms of creating a sense of self-worth and community but I shouldn’t have had to wait until I was in my late twenties and surrounded by people with common experiences to be accepted.

This is why first person narratives of disability are so important, particularly in relation to sexuality because we can talk about the social impact of being deemed undesirable. Third person narratives like those of Kathy Lette about her son really just buy into the social stigma and work with it rather than challenge it.

Her son asked her if he would ever get a girlfriend. A question to me suggests a desire not just for sex but for a relationship, a prolonged romantic experience. Lette’s response was to consider hiring a sex worker which really meets none of those desires even if sex is a desired part of a romantic relationship.

Considering hiring sex workers as a solution even in part to the issue of the widespread cultural disinterest and even disgust with the idea of sex and romantic relationships with disabled people is in some ways to accept and fail to challenge those ideas.

A sex worker is not going to offer a relationship beyond what is agreed and paid for. Disabled people know this. It is not a comparable substitute for actually being accepted and wanted.

I want and deserve meaningful human relationships both simply social and romantic. These are not things I can buy. In order for me to be able to have them. I need people to actually interrogate why disabled people aren’t seen as options for romantic partners. I need more than the platitudes I received from a male friend at 18 when in a moment of bravery I shared my insecurities and the sentiment that no one when I fantasize about an as yet unseen and unmet lover, thinks of someone like me. I even asked him outright if he had ever thought about dating a disabled person.

He deflected by magnanimously claiming that he was open to falling in love with someone who was disabled. He would however not answer my question directly because of course, he had never actually considered it. He, however, wouldn’t directly admit as much because to do so would be to admit to an internalized bias and discrimination.

I want people to be aware not only that disabled people are sexual beings but also be aware of the widespread messages that they tell each other and disabled people about how we are undesirable. I want them to understand the harm that causes and how it sets people up for potential abuse. It goes beyond them simply not considering having a disabled partner.

I want those ideas directly and actively challenged. I want to see disabled people culturally framed as beautiful and I want this to happen without a flurry of think pieces on how progressive it is. Those think pieces are evidence of how strange it still is how people still feel the need to applaud it. The change will come when disabled people can be portrayed as beautiful and sexual and the response is to agree and admire that beauty without qualification.

I don’t want any more disabled people growing up to be told that no one will want them just because they are disabled.

 

 

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Issues of Disabled Sexuality and Consent: When Parents Get Involved in Their Children’s Sex Lives

 

sexy ISA

Image Description: A stencilled modified image of the International Symbol of Accessibility, A presumably male stick figure in a wheelchair being straddled by another stick figure who is presumably female because of the addition of a ponytail hairstyle.

 

Australian-British author, Kathy Lette considered hiring her son a sex worker*. She considered doing this because her son is autistic. This narrative in and of itself is not new or particularly shocking. Parents have discussed considering hiring their disabled sons a sex workers before. I’ve seen narratives written by disabled men talking about their experiences hiring sex workers. The thing that makes Lette’s article so horrifying is the lack of involvement and consent from her son as she goes through her consideration of hiring him a sex worker.

There is also the fact that this narrative comes from her and shares a lot of extremely private medical information about her son. The over sharing of private information about disabled children is inappropriate and exploitative generally but is particularly heinous in the case of Lette as she is literally using her son’s story to sell her novels.

Lette describes her process of seeking a sex worker for her son as follows,

Not one, but two of the mothers I’ve befriended through the National Autistic Society suggested that we take our sons to a brothel. I mean, what kind of mother gives her son the sort of advice championed by Silvio Berlusconi?

But even the temporary solace of sex might do something for his flagging confidence.

Is soliciting a prostitute a seriously abnormal thing to do? Yes. But mothering a child with autism tends to recalibrate one’s view of normal. And so we asked our male friends how to go about it – only to be met with blanket non-co-operation till one pal replied facetiously, ‘Great idea. I’ll just run it by my wife, shall I?’

I asked a French girlfriend who is very worldly. ‘How can you, a feminist, condone prostitution?’ she responded with a searing glare.

Soon after, I was driving past a red-light district near Liverpool Street station. On impulse, I veered off the main road into a labyrinth of dark streets. As women skulked towards me out of the shadows, my heart thumped against my ribcage. What the hell was I doing there? I was more likely to be found at a book club than on a kerb crawl.

Besides, even if I did pick up a prostitute, how would I negotiate the transaction?

No, this was a bad, bad idea. I waved my hand back and forth like a windshield wiper to shoo the women away. When it came to parenting, I obviously needed a hat marked ‘trainee’.

It also crossed my addled brain that I was contemplating an illegal act. Kerb crawling for your child would prove a pretty hard concept to explain to a judge. And, how would I survive in jail? I’m a writer. The only wound I’ve ever received is a paper cut.

I went into spooked deer mode and bolted.

At no point, does her plan involves discussing it with her son. I can only imagine the bizarre and awkward scene that would have followed her impromptu “kerb crawl” if she had in fact succeeded in hiring a sex worker and had taken her home to her unsuspecting son.

“Hello, dear, I hope you’re having a good evening. By the way, I’ve hired you a sex worker. Here she is. Go at it. Have fun.”

The best case scenario is simply a lot of awkwardness. The worst-case scenario is that she, having presented her son with a sex worker, ends up pressuring him into a sexual experience that he does not want and is thus along with the sex worker complicit in a sexual assault.

This narrative falls into the egregious stereotype of disabled male sexuality which suggests (quite incorrectly) that their sex drive is simply constant and completely undiscerning. The very idea that you could simply present someone with a willing partner and assume that they would automatically be attracted to that person and in the mood for that sexual liaison is absurd.

The level of hopelessness that Lette describes, about her son ever finding a girlfriend (which he does eventually do all by himself) is also unnecessarily exaggerated. He is in his early twenties. Contrary to narratives in popular culture, it is still not entirely uncommon for people regardless of disability to have not had a successful relationship by the time they are twenty-one.

I am also struck by the masculine centred nature of these disability and sex worker narratives. The horrific failure of consent that is the Lette example aside. These stories are so frequently couched in a need to explore and affirm sexuality. But they are almost always focused on men. I have never heard a narrative written by a disabled woman or from the parent of the disabled woman in which they seek a sex worker. A 2005 survey suggested that 22% of disabled men had sought the services of sex workers as opposed to only 1% of disabled women had done so.

When it comes to narratives of providing supportive assistance in facilitating sexual relationships for disabled people, women are left out. The social taboo of women hiring sex workers completely overrides the narrative of affirming sexuality that often accompanies stories about disabled men.

This is problematic not because women aren’t seeking sex workers but because it reinforces the idea that men are in some way entitled to sex while reinforcing the idea that disabled women are sexually passive and that disabled women having sex or seeking sex may be in and of itself cause for concern.

Lette’s article reinforces this idea of male entitlement to sex through her complete lack of consideration of consent. It is simply assumed that this is something that he would want and be willing to participate in.

She also entirely fails to consider or address the way that disabled people have been culturallyy desexualized that has led to the conclusion that relying on sex workers for giving disabled men, sexual experiences in the first place. She simply laments that women will not think outside the box. She doesn’t look at how those boxes are created and socially maintained or how they might be broken open and destroyed to include disabled people as socially acceptable and desireable sexual and romantic partners.

Ultimately, the expression of sexuality by disabled people should be led by them. Even in circumstances where third-party assistance might be necessary to fulfil the expression of sexuality, the decision on how and with whom should always come from the disabled person themselves not from a parent or anyone else.

*Lette never actually uses the term sex worker in her article, choosing instead to use more disrespectful language.

 

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When People Use Diversity to Defend Sameness in Autism Narratives

“It’s just one story” or so people keep telling me when I protest the lack of diversity in both autism narratives and characters in the media. The thing is that’s exactly the problem.

Film and television have basically been writing fan fiction about the same autistic character in different scenarios for decades.

This character is invariably white

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.

Male

Adam

Image description: a still from the film Adam where actress Rose Burne (a thin white woman with brown hair pulled up in a messy bun) sits on a bench facing and speaking to Hugh Dancy (a white man with wavy brown hair), the autistic character who is sitting faced forward rather than toward the person speaking to him

Have savant-like abilities

rain man

Image description: Cover art for the Rain Man soundtrack. Dustin Hoffman (a white man with dark hair) who plays the autistic savant walks down a path beside Tom Cruise (a white man with dark hair) who walks with his right hand in his pocket while he carries a bag in his left

There is generally very little deviation. Occasionally, overt savantism is replaced with a special skill or focus as in the case of the film Adam. These minor changes are however not meaningful.Savantism and special or focused skills are treated as almost interchangeable personality quirks.

You will very rarely see and autistic character who is not white and even more rarely see one who isn’t male. These characteristics extend beyond the acknowledged autistic character to those who are merely coded autistic. Those whose behaviour and traits are largely indistinguishable from those of the acknowledged autistic character. The only difference is a lack of stated diagnosis. Examples of such characters include Sheldon cooper on The Big Bang Theory and Spencer Reed on Criminal Minds.

Think I’m exaggerating? I made a chart

Title Character Diagnosed Coded Savant-like Abilities White Male
A Brilliant Young Mind Nathan Ellis Y Y Y Y
My Name is Khan Rizvan Khan Y Y
The Accountant Christian Wolff Y Y Y Y
Rain Man Raymond Babbit Y Y Y Y
Mercury Rising Simon Lynch Y Y Y Y
TBBT Sheldon Cooper Y Y Y Y
Adam Adam Y Y Y
Criminal Minds Spencer Reed Y Y Y Y
Elementary Fiona Y Y Y
Young Sheldon Sheldon Cooper Y Y Y Y
The Good Doctor Shaun Murphy Y Y Y Y

It’s not an exhaustive list but it is an informative one. Seriously, if you come across an autistic character in film or television plug them into this chart and see how many boxes get ticked. Another thing that all of the characters have in common. They were all played by neurotypical actors.

And yet, when I wrote yesterday about the continuation of this single white male autistic narrative in the new show The Good Doctor, I was met with this

one story

Image description: a screenshot of a tweet that reads “People with autism take many forms, faces, and stories. this is just one. Showing that capability isn’t exclusive is so important!” (link to original tweet)

I have a couple of problems with this sentiment. First, it is not just one story. It is pretty much the only story we are told. For this to be an accurate defence, there would need to be evidence that there were other narratives available. Where are they? Second, is it really an accurate story. Another common defence of tired repeated disability narratives is “well some people are really like that“. I am however sceptical about the existence of a man with ridiculous medical skills and genius level proficiency in several areas. I’ll wait while you find me a real life stand in for this imagined magical autistic white man.

It is true that Rain Man character Raymond Babbit (though not the story) was loosely based on actual savant Kim Peake (who was not himself autistic) but even then it was more a mishmash of diagnostic traits than a portrayal of the man.

These characters have a fictionalized kind of autism that focus on rare traits like savantism and then sprinkle in more common traits like sensitivity to noise and difficulty with eye contact so that people see enough recognizable autistic traits to get away with an authenticity defence to tell basically the same man’s story over and over. They just put him in different scenarios. The biggest change in autistic characters overall is that they’ve become cuter (if they’re children) or fuckable (if they’re men). Though actually having sex is rare for these characters. They’ve mostly just gotten hotter. This switch to a more appealing autistic male is generally to use their savantism or special skill as a consolation prize. Sure, he’s autistic but it makes him a fabulous doctor and he’ll save that kid’s life.

This leaves little room for autistic stories where savantism or special skills don’t counteract the perceived unpleasantness of the autism for a predominantly neurotypical audience.

Despite this, there is still the idea that stories about marginalized populations should be “authentic” which is where the “This is just one story” line gets pulled out like a weapon to defend these all too similar stories.

During the promotion phase prior to the release of The Accountant, actor, Anna Kendrick

admits she initially had concerns about whether the film would be able to represent autism in an accurate and nuanced way.

“A friend of mine has an autistic child, and I was so worried about telling her I was going to do a movie with this subject matter and potentially getting it wrong,” she said. “She was like, ‘I’m going to tell you something that somebody told me when my son was diagnosed: When you’ve met one autistic child, you’ve met one autistic child. To have an expectation that he should act this way or you should act that way — don’t even worry about that. Everyone is different.’”

It is both unfortunate that this line is being used by people in the entertainment industry as a promotion tactic. It is also unfortunate that a parent with an autistic child helped her do it.

The phrase “if you’ve met one autistic child, you’ve met one autistic child” was meant to indicate the true diversity of the autistic experience. Not be used as a blunt object to defend a film about yet another magical white autistic man. It does not mean “Do whatever, you want. Autism is basically whatever you want it to be”. Though that is how the entertainment industry interprets it.

Seriously, the next time someone defends a fictional autistic narrative through the diversity of autism. It had better actually be a story I haven’t seen before.

And can we just please put a moratorium on putting white men in those stories because the real diversity of autism goes well beyond diagnostic traits.

 

 

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