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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Labels aren’t Just for Jars: Give Kids the Words to Understand their Lives

Labels

Image Description: a hand places disability label cards onto illustrations of children. Still taken from video in post.

Yesterday, on Twitter someone shared this video and asked me for my thoughts.

Video description: A mostly unnarrated video in which a pair of hands puts labels on illustrated jars like jam, peaches, pickles etc. Then the hands start labelling drawings of children with intellectual disability, gifted, autism, learning disability, ADHD, Tourettes, cerebral palsy and Down Syndrome. The video ends telling the viewer that labels are for jars.

I think talking about my feelings on this needs a wider audience than the one on one exchange I had on Twitter.

I actually completely disagree with the entire video. I think it is important to give children the words to understand and describe their own experiences and that it is also important to teach nondisabled children about disability in a normalized way. I have written before about the impact of not being given the tools to talk about my experience as a disabled person.

Part of the problem of the “labels are for jars” argument is that it inextricably links the label with diagnosis and pathology. It completely ignores the possibility that the label can be part of a disabled identity.

It depends on the idea that disability is defined entirely in medical terms. That as soon as you’ve given a diagnosis and maybe described a few of the characteristics of that diagnosis that you’ve put that person into a box.

It completely ignores the reality of the disabled experience. Experience, that may be impacted by a specific diagnosis. An experience that very likely expands well beyond it.

Not giving children the words to understand their lives is not only a disservice, it’s straight up Orwellian.

Ignoring a child’s disability in the false hope that it will reinforce some kind of normalization is just an adoption of doublespeak. If we ignore reality, then maybe people will just stop bullying and discriminating against disabled people.

In reality, it only serves to further ostracize disabled children because it teaches them they are different and talking about that difference is wrong. It’s trying to solve the problem of discrimination by having the disabled child internalize their oppression and keep silent.

It infuriates me when parents or medical professionals recommend that children not be told about their disabilities in some misguided belief that this will gift the child with a normal childhood. It won’t.

Children aren’t waiting for a label before they decide to bully a peer. While language can be used to marginalize it is not the source of the stigma. Erasing language will not erase the oppression.

I grew up without a diagnosis for my autism. The lack of the label did not stop my classmates from bullying me so brutally that I changed schools, only to find new bullies at the next school.

When I finally got my diagnosis it was liberating. Finally, I understood my experiences. I had a frame of reference to understand why I behaved the way I did and why people reacted to me the way they did.

Having that diagnosis earlier wouldn’t have saved me from the bullies but it would have saved me from the added pain of not understanding why.

Not learning to talk about my disabilities also left me at a disadvantage when I was put in situations where acknowledging them was important. Because no one talked about my being disabled, no one considered how to accommodate me. I didn’t even realize that I had the right to be accommodated.

The erasure of language doesn’t just impact disabled kids. It impacts their nondisabled peers. It teaches them that disability is a dirty word and justifies prejudices against people who have been labelled. And kids will be labelled regardless of the omission of diagnosis. It just means that the labels will be insults and slurs.

Kids are best served by being taught accurate, respectful language. Disability should be normalized not by trying to create a false framework where the disabled children are just like their nondisabled peers. This utterly ignores the very real differences in experience.

Normalize disability by acknowledging it and by respecting the realities of disabled kids. Model inclusivity and accommodation. These things cannot be done if you haven’t even taught the children how to express their realities and ask for the things they need.

Teach kids how to talk about disability

Empower disabled kids to understand and talk about their lived experiences.

Teach nondisabled kids that disability isn’t something to be ignored or overlooked.

Language and identity are complicated and children, as they mature and grow may decide for a variety of reasons that they don’t like or identify with a certain label. These language preferences should be respected but I would like to see a world where a label isn’t rejected because a child has internalized stigma and prejudice and believes being associated with it makes them less.

Give kids words. Language empowers. Denying kids words is erasure.

Remember that sometimes words aren’t just labels. Sometimes they are identities.

 

 

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If You Care about Autistic People Don’t Just Perform Solidarity

So April is upon us and along with it Autism Bewareness Month (I stand by that word choice). Tomorrow is World Autism Awareness Day and I am already feeling suffocated by all of the faux awareness.

Awareness would be great if it actually meant that people were actually educating themselves about the realities of autistic people. If it meant promoting the voices of actually autistic people. I would be ecstatic if that real awareness translated into acceptance and action. Action, that meant fighting for the rights of autistic people. Unfortunately, more often than not we get shallow shoutouts.

The danger of those shoutouts is not only in their inefficacy and often patronizing messaging, it is also in that they benefit problematic organizations.

Yesterday, I was scrolling through my Facebook feed when I noticed that a friend had added a border to their profile picture. The following image is my own photo with the border as illustration (don’t worry it never made it onto my profile).

autism speaks frame facebook

Image description: A woman with short blond hair, blue eyes and dark blue lipstick, looks directly at the camera. On the bottom is s white border with the Autism Speaks logo (a blue puzzle piece over the words Autism Speaks) and followed by the words “different not less”

First, let’s deal with the messaging. On its face, it’s a positive message but it also doesn’t really tell you anything about me or my experiences as an autistic person. It’s also so basic that it merely pays lip service to my humanity rather than actually affirming it. It exists in the same vein as the empty “special needs” memes that promote “acceptance” through pity.

10940999_769959393059095_6633527766282533542_n

Image description: Black text on a pink background the text reads “anyone willing to post this and leave it on their status for 1 hour? It is Special Education Week & Autism and ADHD Awareness month–This is in honor of all children who struggle everyday”

Images like this often position themselves as dares, the suggestion is do you dare? are you brave enough? The message that those who don’t are morally suspect. Then the images don’t share any actual information but reaffirm the preconceived notion that to be disabled is to suffer.

Not only is this not true awareness it is active misinformation that spreads pity.

Returning to the Autism Speaks Facebook border. While is isn’t as aggressive in its approach to getting people to use it, the end game is the same. You can feel good about the fact that you’ve done something. You’ve helped raise awareness. Admittedly an awareness that consists largely of an acknowledgement that autistic people exist and a general sentiment that it’s probably best to be nice to autistic people.

It doesn’t tell you why you need to be reminded of these facts. It doesn’t tell you about the real risks of violence and bullying that autistic people face. It doesn’t tear down stereotypes about autism. Which means that people are likely going to continue to comfortably believe the misinformation they may have internalized.

This kind of solidarity is predominantly a performance. It may come with good intentions but it ultimately does little or nothing to actually help autistic people. It does make people who add that border to their profile picture feel warm & fuzzy though.

One thing that the widespread adoption of performance solidarity like that border is that it gives a lot of publicity to the organization that created it and that’s a problem.

Autism Speaks is an organization that has a long history of speaking for autistic people with little or no input from actually autistic people. It has spread dangerous narratives about autistic people. It has supported anti-vaccination narratives.

While there have been changes in the organization and it no longer promotes a cure narrative and is no longer overtly anti-vaccination. It still widely benefits from it’s history peddling those dangerous narratives.

consider how the White House is going to “Light it Up Blue” (a practice created by Autism Speaks) tomorrow for the first time in years after the Obama administration halted the practice, in large part because of feedback from the autistic community. Donald Trump is friends with Bob Wright, one of the founders of Autism Speaks and the source of many of the dangerous narratives that the organization no longer officially supports. Trump is also sceptical of vaccines.

So regardless of their official position change. Autism Speaks is still largely associated with those narratives and they crop up in very visible ways. Autism Speaks is almost certainly going to financially benefit from this connection.

Despite their official change of heart, Autism Speaks is still widely disliked by actual autistic people who remember the years of demonization from the organization. It is also far too early to tell whether the official changes in policy will translate into real change in the actions the organization takes.

So, I would ask you not to change your profile picture to include that border this April. I would ask that you not support Autism Speaks.

If you really want to support autistic people this April and hopefully beyond it, you can support organizations that are run by autistic people like the Autistic Self Advocacy Network and the Autism Women’s Network. You can read the work of actually autistic people. You can promote and amplify their voices and work. You can financially support them (shameless plug for my tip jar).

These are things that can actually create a more nuanced understanding of autism and a positive kind of awareness. An awareness that leads to acceptance and action on the right of autistic people.

 

 

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Open Letter to the Autism Society Regarding Your Decision to Honour Ben Affleck

AutFest

Image Description: Aut Fest Logo, the words Aut Fest appear in white on a black clap board (like they use to differentiate takes on film shoots)

 

Dear Autism Society and Organizers of Aut Fest

I am writing to you as an actually autistic person who is very concerned about the fact that you have chosen to honour Ben Affleck at Aut Fest. Beyond the fact that The Accountant is full of horrific stereotypes. Affleck’s opinion of the role and how autism should be portrayed is deeply problematic (see here and here). Affleck’s inclusion not only hurts autistic people it suggests that you as an organization are ok with that in order for the attention his name will bring.

As a woman, I am also concerned about celebrating Ben Affleck in light of the fact that he actively shielded his brother from accusations of sexual assault & harassment. I want to live in a world where that kind of behaviour is not tolerated and where people who exhibit that behaviour are not honoured in ways that suggest that they are humanitarians.

It is of course also utterly ridiculous to honour a neurotypical actor for playing an autistic character as though this is groundbreaking humanitarian work. It is not. It is not brave. It is not a sacrifice. He did an acting gig for which he was paid. An acting gig that as I’ve previously mentioned utterly threw autistic people under the bus. It was an acting gig that as a consequence of being performed by Ben Affleck was not performed by an autistic actor. This further normalizes the idea that Hollywood should not actively seek to employ autistic actors or disabled people in general. It also solidifies the idea that it is appropriate and beneficial to have neurotypical people at the helm of telling stories about autistic people.

So, what then are you honouring Affleck for?

Is it because he said nice things about autistic people while he did media appearances for the film?

You know that’s actually part of his job, right? It’s advertising, not activism. It would not have been helpful to the film’s bottom line if he didn’t mention the film’s gimmick plot point.
It wouldn’t have gone over well if he had said that autistic people were evil. Particularly, because they were trying to sell the lie that his performance was authentic. The research and visiting autistic people was part of the PR campaign. It’s just unfortunate that the content of the film undermined those public assertions but again it was advertising, not activism.

So, I’m generally just confused as to what you are honouring for as he is just someone who did a job for which he was paid. As a result of doing that job, he reinforced stereotypes about autism, took a job that should have gone to an autistic person and told a story about autism that wasn’t his to tell.

The fact that you would capitalize on Affleck’s star power despite these concerns suggests that you are more interested in donations than you are in actually helping autistic people. I hope that you will reconsider your decision but know that as long as you don’t that you are not only not helping me (an actually autistic person) and are actively misrepresenting me.

Sincerely,

Kim Sauder

PS: Further reading on this

How ‘The Accountant’ Victimizes The Autistic Community

Autism Society Celebrates … Ben Affleck?

From Amy Sequenzia

 

 

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