Author Archives: elliott

30 Windows into My World #4 (All About Ableism)

Hi friends! I’m doing a project where I will complete 30 prompts about autism, talking about autism in general, my own experiences as an autistic person, and an assortment of related topics. For each prompt, I hope to write a little bit and also include a small drawing. There will be 30 prompts/posts in total, which should cover a variety of information.

April graphic 4 - End Ableism

[Image is a simple drawing and text on a yellowish peach background. Bold red text in the center of the image reads: “End Ableism”. Beneath the red text are slightly smaller words in black ink, reading: “Respect Difference!” All around the central text are positioned various symbols representing different disabilities. Above and beside the big red text are the following three symbols: 1) A drawing of the outline of a human head in profile, with the shape of the person’s brain shown, to indicate disabilities that are brain-based, psychiatric, mental, cognitive, developmental, and/or neurological in nature. 2) A drawing of an eye, which is bisected by a slash from top to bottom. The slash is slightly tilted, resembling a backslash. To the left of the slash, the eye is covered with additional slashes that follow the shape of the eye but conceal the iris and white of the eye. This symbol indicates vision-related disabilities, such as low vision or blindness. 3) A drawing of the standard or classic symbol for disability: a person seated and facing to the right, in a wheelchair. The symbol indicates wheelchair users and is associated with mobility-related disabilities. To the left hand side of the red text, there is the symbol of a person, seated and facing right, in a different kind of mobility device, as they appear to be using an electric wheelchair. Like the other wheelchair symbol, this icon indicates people with mobility-related disabilities. Below the drawing of the electric wheelchair user, beneath the red text, there is a drawing of a stylized ear with a slash going through it. This icon indicates people who are Hard of Hearing, d/Deaf, have hearing loss, or have other disabilities related to hearing. A final icon is on the right hand side of the image, towards the bottom beneath the text reading “Respect Difference!”. This icon is a drawing of an eye, with a long slash bisecting the middle of the eye. The slash goes from left to right like a backslash. This symbol represents blindness. Beneath the drawing is the name of the creator of the image: “Elliott Roosa,” and the year the drawing was created: 2018.]

Please note: In creating the prompts for this project, I drew heavily upon the work of a blog called 30 Days of Autism Acceptance which belongs to a person called L (aka Gideon), and the work of Shanya Gier. This is where the ideas for some of the topics came from, but they won’t look the same because I edited them, added to them, and rearranged them in order to have a series of 30 prompts that will work for what I intend to do for this project. But I wanted to give credit where credit is due.

Part 4 – Today’s prompt is: Ableism

What is ableism?

How does it affect how non-disabled people think about disabled people?

What are the problems with this?

How does this affect perceptions of autistic people?


Important Note:

This post discusses ableism in detail and references some extremely disturbing ways that ableism is found in the world. Please be prepared if reading about these topics could upset you.


  • Content Warnings:
  • Discussion of ableism, including a number of related topics and examples of those topics, often discussed in detail.
  • Topics include accessibility barriers, violence, discrimination, media portrayals, eugenics, ableist slurs, institutionalization, treatments and pseudoscience, and stigma.

  • Trigger Warnings:
  • History of eugenics
  • Abuse, murder, and violence against disabled people
  • Institutionalization (including brief mention of lobotomy)
  • Pseudoscientific, dangerous, and/or abusive treatments/therapies
  • Armchair diagnosis
  • Blaming disabled people for violence
  • Savant syndrome
  • Inspiration porn
  • Media and literary portrayals
  • Ableist slurs (including the R-slur, which is partially censored)
  • Brief mention of freak shows
  • Brief mention of pseudoscientific concept of monstrosity


I generally define ableism as “a form of systematic discrimination against disabled people on the basis of disability. It’s something I have mentioned a few times in the previous three posts in this series. It’s something that many people in disability communities discuss frequently. It’s also a very basic, fundamental, widespread kind of prejudice that is often overlooked, to the degree that many people do not even realize that ableism exists or know what it is! I’ve even been asked if ableism is a real word — it is!

Regionally speaking, however, I want to quickly note that in some places the word used for discrimination against disabled people is “disablism,” but it is the same thing as ableism, just a variation in terms. I use the term ableism because that’s what I heard first and what I hear most frequently.

There are many layers, flavors, and different kinds of wrapping paper in the manifestations of ableism, but ultimately it works in society similar to how other forms of systematic prejudice work, such as sexism or racism. Just as sexism and racism are deeply ingrained in our society and are extremely harmful, ableism comes from an insidious and automatic hostile response to disabled people, and seriously impairs their freedom, rights, opportunities, and well-being. Yet many abled people (non-disabled people) do not realize they are hurting disabled people in myriad ways. They might even think they are being helpful. This is why it’s extremely important to increase awareness of ableism and specifically show what it is. Finally, an awareness campaign we can all get behind! As it were, this year Erin Human has launched some really great resources in this vein, all about how ableism is what we should focus on during the month of April, rather than blue lights and fundraisers for poorly reasoned and poorly managed (especially fiscally) attempts at “autism awareness”. There are a wealth — a veritable dragon’s hoard — of resources created by autistic people on the issues with “autism awareness,” so please seek those out for more information on that topic, as we’re going to focus on ableism in general in this post, rather than just awareness campaigns.

But how does ableism manifest? To those who aren’t aware of it, it’s hard to spot where these biases cause trouble. Ableism can be as fundamental as seeing a disabled person and automatically thinking of them as broken or defective. It isn’t far for the mind to jump from “defective” to “useless” and “tragic,” to “pitiful” and “shameful,” or “gross” or “disgusting,” and a plethora of other toxic ideas and assumptions about a person, their disability, and their life. And it’s a lot more than just what one person believes: these ideas are reinforced in language, media, fiction, laws, education, medicine, insurance, government, architecture, and virtually all societal institutions.

Ableism is apparent in the ever frequent occurrence of neglected and uneven sidewalks which assumes that no one with a walker or wheelchair or scooter or other mobility aid will need to walk there. It is apparent in movies and concerts and shows that have bright flashing lights that could trigger seizures, migraines, and sensory overload. It’s the big stone steps up to your local library, where they have no ramps or elevators to allow people who can’t use stairs to even get inside the building. It’s when a developmentally disabled person is paid far below minimum wage, while a non-disabled person does the same work and is guaranteed minimum wage or higher. We see ableism when violent and corrupt people are given armchair diagnoses by the public, rather than being held accountable for the things they choose to do that are immoral — and not part of any diagnosis. As a society, we would rather push them away from ourselves — by painting them as “crazy” or “insane,” or saying they should be “put away,” — than acknowledge that the same potential to do horrible and evil things exists in every person, abled or disabled, and is independent of a mental illness. Being a terrible person does not require a disability. It’s been said by disability activists a million times, but here it is again: Most people who commit violent crimes are not mentally ill. Mentally ill people are far more likely to be the victims of violence than the perpetrators. Read that again if you need to, or as long as it takes to start changing your mind about the lies you’ve been told about the dubious-at-best connection between mental illness and violence.

Overall, ableism is rooted in the assumption that disabled people will always be “other” and will never be a valued part of society. And in its myriad, insidious manifestations, ableism says that disabled people should always be “other” and should never be integrated into society. This thinking reveals the deeply ingrained idea that disabled people are inherently unequal, and they will never be allowed to be on equal footing with everyone else in the world. But disability is not shameful or a punishment or something evil, and projecting those qualities on to disabled people is — again — a form of violence that “others” the disabled by definition. It is important to remember we are not far removed from the days of exploitative freak shows, or the so-called scientists who studied human “monstrosity,” or institutionalizing multitudes of disabled people in horrid conditions, allowing disabled infants to die (or outright killing them), or the days of Hitler’s T4 slaughter of “useless eaters,” or lobotomizing asylum patients to render them more “manageable”. The list could go on and on. The utter lack of awareness of the issues surrounding ableism is very troubling, and that’s why we all really need to try harder to understand it, and challenge the archaic assumptions and beliefs that still pervade our society and our world.

When paying attention to ableism, you will stumble upon its influence nearly everywhere. Ableism can even be as mild as the words you use that reinforce the idea of the inferiority of disabled people. For example, the word “cr*pple” is widely considered a slur, as is the word “r*tard.” This is not a matter of simple “political correctness” or self-righteous people trying to control your self-expression. This is about waking up to the automatic, unintentional biases that invade our thoughts and our speech, and then deciding to consciously work to counter them. It’s not a punishment, but a responsibility. Becoming aware of your biases is what helps to free you from them.

Another seemingly well-meaning manifestation of ableism can be found in “inspiration porn“. Feel-good, superficially wholesome videos, commercials, and articles about disabled people often hide ableist bias, but they’re still exploiting the disabled and using ableism to give you feels and “inspire” you. Such overly sentimentalized narratives are curated for the abled, to appeal to the abled, and do not grant dignity to their disabled subjects. Instead, the disabled are portrayed as tragic, challenged, broken, and suffering, then “saved” or “rescued” by an abled person — sometimes just tolerated — or they “overcome” their disability in a “noble” way that makes the abled audience tear up . Inspiration porn is for the consumption of the abled, and by definition cannot accurately, respectfully, or individually represent, or offer a genuine connection with, a disabled person on their terms.

The next time you see a video or a commercial about a disabled person, try to look beyond the buzzwords and saccharine portrayal. Inspiration porn is produced by and for abled people, to their specifications and preferences, and according to their biased understanding of disability and disabled people. Think critically about what you see, look carefully at the word choices used to describe the disabled person, and note if an abled person appears as curator, translator, paragon of kindness and compassion, savior, virtuous friend who can “look beyond” disability or “doesn’t see” disability, and so on. Whenever you see a video or commercial about disabled people, question who the video is for. Does it show respect, autonomy, and dignity for the person? Or is the disabled person more of a concept, stereotype, or prop for the abled people to show how compassionate and good they are? Our stories should not be about how abled people relate to us and do us a favor by not running away from us, abandoning us as children, or killing us. As humans, as people, as individuals, we should be able to have ownership of our own stories. Our narratives should not be limited to pity, warm fuzzies, tokenization, and dehumanization because it appeals to abled people and rakes in the views and likes. Authenticity is something we deserve and are entitled to as human beings. Denying that gives the false impression that disabled people should exist on the outskirts of society and can only be granted value by the most saintly of abled people — because a person must be extraordinary if they’re willing to “deal with” such untouchable people. There you go, just in case you weren’t disturbed enough by this point in the post.     

Troubling narratives about disability extend beyond videos and PSAs and commercials, and into highly respected aspects of culture. In many forms of literature that inform Western society, disability is handled in troubling ways.

For example, disability is portrayed as literally monstrous in renowned works like Beowulf, in which the epic poem’s two grotesque monsters that must be slain are coded as representations of people who had deformities and were rejected from society — and even barred from their humanity — as a result. Then there are the (literally ancient) tropes that disability is a defect given to a character or historical figure which indicates some other nonphysical personal trait with a supernatural or superhuman quality, such as Homer’s putative blindness, which formed the supposed downside to his genius at composing poetry. beyond that of any other. The character of the blind prophet Teriesias had a similar double meaning to his disability. An inability to see through his eyesight corresponded with an increase in wisdom, insight, and awareness, plus an ability to perceive beyond what most people perceive, including awareness of those in other worlds and seeing into the possibilities of the future as an oracle. These traits might sound interesting, but they are just one piece small of the problematic structure that makes authentic, respectful, illuminating representation so hard to come by. Relying on superpowers to characterize disabled figures — or “counteract” the perceived negativity of their disability — is a seriously reductive idea that plays directly into many of the prejudices held by abled people. A seemingly positive trait is damaging when it’s portrayed as the only good thing about you, and the only reason you should be allowed to live.

However, the disability/remarkable trait trope can go the opposite direction too: the presence of a disability might indicate a deep flaw in the character or figure, or some kind of evil curse or divine slight. Off the top of my head, the “Six-Fingered Man” in The Princess Bride was an example of an evil character marked by the presence of a physical difference, as his trademark polydactyly (having more than five digits on a hand or foot) identified him as sinister and made him inherently “other” to the rest of the characters. The “Six-Fingered Man” was a cruel and sadistic character and he was identified by his unusual physical trait, as that was his trademark — as well as a feature perceived as frightening and disturbing by the rest of the characters.

But having a disability doesn’t make you an evil person, nor does it make you a saint. Disabled people don’t want to be seen as evil or inhuman, nor do we want to be seen as magical or angelic. Overwhelmingly, disabled people want to be seen as people: equal, respected, included, dignified, human people. Neither subhuman nor superhuman, just human.

A strange version of these tropes are found in the consideration and treatment of autistic people. The idea of “savant syndrome” — that an autistic person will be disabled in most ways yet possess a rare and unique gift far beyond the abilities of most abled people — may seem to be positive, but is disturbing when you look at it more closely. The idea that a “savant skill” — like having a photographic memory, or being a human calculator, or having extraordinary artistic talent — is a “redemptive” quality in an autistic person is infuriating to many disability activists.  “Savant syndrome” is considered very rare, yet every autistic person seems to be held to this absurd, unrealistic standard. A special talent or skill is not necessary to grant an autistic person humanity, nor is it appropriate to believe that a savant skill is what grants value or respect to a disabled person. Yet we see the same idea over and over: So-and-so is so very disabled and unrelatable and subhuman, but look they have a magic skill! They are worthwhile after all!

As if this is the value of autistic people! Disgusting that our society would believe that a disabled person is a non-person, a burden, and a living tragedy such that the only way they could be appreciated would be if they had an extremely rare, extremely profound special ability. The reality is, most autistic people do not have a “savant skill” — and they don’t need one to prove they are human and deserve dignity and respect. Like anyone else, autistic people each have their own strengths and weaknesses. We have abilities and skills, likes and dislikes. Being disabled and/or being autistic doesn’t mean a person is lacking or incomplete. That idea is extremely offensive to autistic people. We want to be seen as people, not as collections of deficits and symptoms.

So many of the attitudes toward the disabled are unhealthy — and they can even be deadly. It might seem outrageous at first to find out just how dangerous this world is for disabled people, but when you consider the powerful, systemic, insidious biases against the disabled, it becomes much clearer. Because many disabled people are automatically viewed as flawed, missing parts of them to make them “whole”, suffering without end, leading an unbearable existence, not truly wanting to live, being more of a burden than a person, etc., abled people sometimes take their prejudice and use it to jump to violence.

This ableist violence can take many forms. In some cases, the manifestation is more straightforward, such as when people outwardly act out of hatred and physically or psychologically harm a disabled person. Ableism can result in the abuse of disabled people, and unfortunately it is very, very common. To outsiders, abusers might seem to love and genuinely care for the disabled person they target, but this is an act that hides the dangerous truth. It isn’t okay to harm disabled people, even if you think you love them and it cancels out, or if you think they don’t understand what you’re doing or saying, or if you think you are helping them through your actions.

Other forms of ableism can be especially insidious, yet incredibly disturbing to discover. Some people close to a disabled person — they might be a parent, nurse, relative, guardian, or other caregiver — develop the conviction that the person should not be alive. Perhaps they are seen as too much of a burden, or are perceived to be suffering, or are seen as unworthy of life due to “defect”, or other such rationalizations. All these ideas branch off from the destructive theme that disabled lives are disposable and not worth living. So many disabled people have faced abuse, violence, and even murder at the hands of those who were supposed to love, care, respect, and protect them.

Every year in March, the disability community holds vigils to honor and memorialize these victims of ableist violence. This event is called the Day of Mourning and recognizes these victims who are frequently overlooked or forgotten, while the media focuses on their murderers and garners sympathy for them rather than their victims. Each year, the names of disabled victims are read aloud, and the list continues to grow every time it’s recited. If you would believe that eugenics and mercy killings are automatically just, then you are standing on the side of murderers who killed for their own reasons and their own devices — not anyone who has shown justice, respect, or compassion to disabled individuals.

Again, the common threads repeat over and over. Ableism is a systemic, systematic prejudice that finds so many places to take root in our world. The antidote to ableism is to carefully, intensely, critically examine the concepts, opinions, beliefs, and thoughts about disability and the disabled that inform your attitudes and actions. When you find what is biased, full of prejudice, and unjust, you must pull up every piece of it like a tangle of weeds by the root and reject it — because those toxic roots are directly fed by fear, hate, and disrespect — and these things are not part of the foundation of a free and healthy world in which we all belong. Whether or not such a world will happen, I choose to believe it can, and until I see it happen, I will keep trying to uproot the seeds of prejudice to heal their toxic influence. Whether you are abled or disabled, I hope you’ll join me in this work.


Part 5 of the series will be posted soon.

Its focus is on Misconceptions, Stereotypes, and Myths surrounding autism.

Be sure to check it out!

 

Advertisements

30 Windows into My World #3 (Identity & Language)

Hi friends! I’ve decided to do a project where I will complete 30 prompts about autism, talking about autism in general as well my own experiences. For each prompt, I hope to write a little bit and also include a small drawing! There will be 30 prompts/posts in total, but it’s not going to be 1 prompt per day like you’d expect, because things are too unpredictable for me. So this will extend past the end of April. But stick with me and these posts! It should be fun!

30176546_959588724222294_227033196_o

[Image is a simple line drawing and text in black and blue ink against a square, very light pinkish background. Bold text in blue letters reads: “A Unique World.” Blue five-pointed stars surround the text. Below these words, there is a drawing in black ink of a pair of eyes gazing softly at the viewer. The space between the text, drawing of eyes, and stars is filled with a pattern of tiny dots. Beneath the drawing is the name of the creator of the image: “Elliott Roosa,” and the year the drawing was created: 2018.]

Please note: In creating the prompts for this project, I drew heavily upon the work of a blog called 30 Days of Autism Acceptance which belongs to a person called L (aka Gideon), and the work of Shanya Gier. This is where the ideas for some of the topics came from, but they won’t look the same because I edited them, added to them, and rearranged them in order to have a series of 30 prompts that will work for what I intend to do for this project. But I wanted to give credit where credit is due.

Day 3 – Today’s prompt is: Identity and Language

Do you want to be called a person with autism?

Or an autistic person?

Which do you prefer? Why?

In the last post, I discussed a bit about acceptable and unacceptable language for talking about autism. My information was based on the norms for the Autistic community and Autistic culture. Now I’d like to talk a little more about how I personally feel about different ways to talk about autism. If you know me, you are familiar with my passion for language and my strong interest in linguistics. Language is very evocative for me, going far beyond the meanings of words alone. I experience language in a way that I think is unique, and it has allowed me to do things with language that are unusual and unexpected. Like many autistic and many otherwise neurodivergent people, I experience what’s sometimes described as “linked senses,” but is better known by the terms synaesthesia and ideasthesia. To me, each letter of the alphabet and every number has its own color, gender, personality, texture, emotion, and other assigned information. It is the same with the days of the week and the months of the year. When I hear music, I also see it — it has form, motion, color, texture, emotion, and so on. When I feel sensations in my body, such as an itch or hunger or pain or a headache, I also experience it as color, texture, and so on. 

Due to these differences, language is a very intense phenomenon for me. The sound of a language, the rhythms of language, the words themselves when written and when spoken, the grammar itself — all of it is an explosion of experience in various sensory and conceptual systems in my brain.

I credit these experiences with helping me learn to read — even though I hated the process! My mom’s patience and ingenuity was a significant factor as well. I recall some of her unconventional approaches — such as making models of all the letters of the alphabet out of clay so that they could be touched and moved — as something which helped reading “click” for me. Later on, my intense experience with language helped me rapidly learn new words, and has also allowed me to learn foreign languages with ease. I’ve also had a lot of fun constructing my own imaginary languages from scratch, and creating lots of codes and scripts and ciphers. I wouldn’t have been able to do this without having an unusual brain.

Later in life, I was led to study linguistics, which gave official terms to the things I had noticed about how language worked as a child. I still think about language quite a lot! Recently, I’ve been very intrigued by etymology — a natural extension of my love of pulling apart the layers of meaning and interpretation in words.

So how does this factor into my ideas about the language surrounding autism? It has led to my own individual preferences and feelings about how people talk about autism.

To look at the debate between “autistic person” and “person with autism,” I prefer “autistic person,” because I find “person with autism” a very awkward construction, plus it lends itself to some truly bizarre iterations that try to distance “person” as far as possible from “autism,” — resulting in strange-sounding and ambiguous phrases. Nor do I like things such as “person with a diagnosis of autism,” “person labeled with a diagnosis of autism,” or “person with a lived experience of autism,” for the same reasons. I think they’re just a step away from “person who has been labeled with a diagnosis that is potentially autism but we are afraid to just say what we’re dancing around”! I really prefer simplicity, frankness, and clarity to a misguided attempt at “political correctness”.

And what about “I am autistic” vs. “I have autism”? I prefer “I am autistic” because it is standard in neurodiversity circles, but surprisingly, I don’t have an issue personally with “I have autism”. I don’t really mind it. To me, it’s more or less the same. But I know there are a lot of people who feel like it implies that autism is a separate piece of themselves that they carry along with them, rather than an inherent part of how their brain exists and functions.

I default to the preferences of the majority of the community on these issues, in order to support those who do have very strong opinions on things I feel less strongly about.

One phrase that does bother me for some unknown reason is “on the spectrum.” I can appreciate the intended meaning, but to me it always sounds like a euphemism. It’s as if someone doesn’t want to say “autism” or “autistic,” so they half-whisper “on the spectrum” instead. It sounds like a mild or sideways way to indicate autism, rather than just saying the word. Again, I really appreciate frankness! So I’m skeptical about this phrase, but I’ll still assume good intentions when I see it.

Autist” is another word I find weird! I think this is more of a British way of saying “an autistic person”? I’m not certain on that! However, to me it always looks like someone was writing “autistic” and something happened partway through and they gave up writing and left the end of the word off! I just want to finish the word! But I know this is a valid way for people to identify themselves, and so I definitely support its use… You just will probably never see me describe myself that way.

As far as my unique perception of language, some words are very beautiful to me, in color and texture. Words also appeal to me in their personality and emotion. One word I really like happens to be the word “autism”! It is bright red to me! It is bold and strong and unmistakable. The color red is my favorite color, and so that adds extra appeal to the word. It’s also very easy to spot due to its bright and eye-catching color. Oddly, the word “autistic” simply doesn’t look as nice to me. The red color is strongest at the beginning, but fades to a ruddy brown toward the end. My name is also red, but it has more orange tones to it, as well as some very dark red mixed in.

Aside from the typical senses, language is very interactive to me. When I see a word, I am also getting the experience of the emotion I sense in it, as well as the personality and gender of the word, plus any other conceptual part of it.    

It’s strange to think that no one else experiences things quite the same way I do, but I know that so many of my fellow Autistic people also have their own way of understanding things in terms of synesthesia and ideasthesia. And those who don’t have synesthesia and ideasthesia still have their own unique and valid ways of experiencing the world. It’s pretty amazing when you think about it, just how diverse we all are and what a treasure one’s own perception is.  


Part 4 of the 30 part series will be posted soon.

Its focus is on the theme of ableism.

Be sure to check it out!  

30 Windows into My World #2 (Disability & Difference)

Hi friends! I’ve decided to do a project where I will complete 30 prompts about autism, talking about autism in general as well my own experiences. For each prompt, I hope to write a little bit and also include a small drawing! There will be 30 prompts/posts in total, but it’s not going to be 1 prompt per day like you’d expect, because things are too unpredictable for me. So this will extend past the end of April. But stick with me and these posts! It should be fun!

30174628_958463014334865_401126732_o

[Image is a simple line drawing and text in black and red ink, against a light yellow, square-shaped background. Large text in bold, clear letters reads: “Respect Is Key!” Simple drawings of five-pointed stars sit beside each side of each of the three words. Small dots mark the background behind the text and drawings. A drawing of a simple but old-fashioned-looking key sits to the left of the big text. At the bottom of the drawing, smaller red text reads: “Speaking about Autism and Disability”. Beneath the drawing is the name of the creator of the image: “Elliott Roosa,” and the year the drawing was created: 2018.]

Please note: In creating the prompts for this project, I drew heavily upon the work of a blog called 30 Days of Autism Acceptance which belongs to a person called L (aka Gideon), and the work of Shanya Gier. This is where the ideas for some of the topics came from, but they won’t look the same because I edited them, added to them, and rearranged them in order to have a series of 30 prompts that will work for what I intend to do for this project. But I wanted to give credit where credit is due.

Day 2 – Today’s prompt is: Disability and Difference

Is autism a disability? Or a difference?

Can it be both? 

♦♦♦ Please note: This post discusses some ableist language to point out what is wrong with it, and contains mentions of some of these harmful words, including the R-slur. The mention of the specific words is brief, but please be prepared in advance if that will bother you. 

Many people are anxious about disability. They may be uncomfortable about the subject, often a cultural taboo to openly discuss, or sometimes something that people don’t want to acknowledge at all. Some may even be nervous about interacting with disabled people. Fears of disability can also be so misplaced that ableisma form of discrimination targeting disabled peopleresults in such things as offensive stereotypes, demeaning representation, misinformation, bias, stigma, eugenicist efforts, loss of rights, and even violence against disabled peopleThe history of society’s disrespect for disabled people is long, deplorable, and complicated, but many groups of disabled people have gotten together to form their own communities and their own cultures to promote advocacy, activism, and equality, and to protect their rights — including their right to exist and their right to be a respected part of society. Many groups have outlined their own stances on issues, and hav vocally determined what is respectful and what is intolerable and what infringes upon their rights, safety, and wellbeing.

Many groups — especially those working for autistic rights — strongly advocate dismissing any terms for disability that are euphemistic or damaging. Among Autistic people, phrases like “special needs,” “differently abled,” and “special ed” are seen as infantilizing and dismissive of the humanity and dignity of autistic people. Opposite from those euphemisms, there are highly derogatory words used to describe disabled people that are often applied to autistic people. These include the phrases “slow,” “mentally challenged,” and “mentally handicapped,” as well as the R-slur, which autistic people (and others) consider extremely offensive. Words like “r*tard” and “mentally r*tarded” are harmful due to their hateful connotations, and although they originated from clinical usage, these outdated terms are full of bias and express disdain for autistic people.

Among the disability activists, organizations, and communities asking for realistic, non-judgmental terminology to describe themselves and their experiences, autistic people — quite characteristically — desire frankness, honesty, and neutrality in how they describe themselves and what they wish to be called. This request is very simple. And what many autistic advocates, activists, organizations, and individuals have said is to simply call them “disabled” and “autistic.

Many autistic people want to be referred to as disabled people, and not as “people with disabilities”. This is a big issue for many people outside the Autistic community as well! Generally speaking, many autistic people don’t want to be spoken of as “having autism.” They reason that this pulls apart their identity into an autistic part and a non-autistic part, when this is not realistic and does not reflect their experiences. It implies that autism is an external piece that they can carry around with them, and this is not the case. Many have imagined it like a suitcase that they bring with them everywhere they go, using this ridiculous image to show why that terminology doesn’t make sense to many autistic people as an authentic representation of their lived experiences.

An autistic person has no need to try to extricate themselves from their own brain. Their brain is a part of them, and their brain is an autistic brain. There’s nothing wrong, defective, or shameful about that. You also cannot tease apart the person from their autism. It is part of their being, and cannot be separated without destroying the individual. Autism is an integral part of who we are, and we wish to have our identity as such respected. Trying to pry a person apart with stigma, shame, and anger will only result in destroying the person and making them hate themselves for their inability to split themselves on command into the different pieces you want.

In general, the Autistic community’s acceptable way to refer to a person is “autistic person,” not “person with autism.” Is that person a “disabled person” or are they a “person with a disability”? The consensus in the Autistic community is that they are called a “disabled person”. Though this is the general view, when you meet a person, you should try to find out from them what they prefer to be called. There are exceptions to the rule, and if a person asks you to call them by one kind of terminology but not another, you should respect that and follow their wishes.    

So is autism a difference or a disability? Whoever poses this question implies that it must be one or the other, but I do not believe that is true. I strongly feel that autism is both a difference and a disability. I think all disabilities are differences, but not all differences are disabilities. Autism, however, is definitely both!

My next post (#3) will talk more about my own identity and language used to describe me. Stay tuned!

 

 

30 Windows into My World #1 (Identity & Discovery)

Hi friends! I’ve decided to do a project where I will complete 30 prompts about autism, talking about autism in general as well my own experiences. For each prompt, I hope to write a little bit and also include a small drawing! There will be 30 prompts/posts in total, but it’s not going to be 1 prompt per day like you’d expect, because things are too unpredictable for me. So this will extend past the end of April; I’m not sure yet. But stick with me and these posts! It should be fun!

april graphic different brain

[Image is a simple line drawing in black, blue, and red ink. The drawing appears on a pastel mint green background. Text in bold, creative lettering reads: “Autism is a different kind of brain.” The text is decorated with red dots and lines, red underlining, and blue flourishes to emphasize the writing. Surrounding the text and its decorations are drawings of a blue and black flower, small black stars, a larger blue and black star, and a drawing of a person’s head with the shape of their brain outlined and decorated with blue dots. Beneath the drawing is the name of the creator of the image: “Elliott Roosa,” and the year the drawing was created: 2018.]

Please note: In creating the prompts for this project, I drew heavily upon the work of a blog called 30 Days of Autism Acceptance which belongs to a person called L (aka Gideon), and the work of Shanya Gier. This is where the ideas for some of the topics came from, but they won’t look the same because I edited them, added to them, and rearranged them in order to have a series of 30 prompts that will work for what I intend to do for this project. But I wanted to give credit where credit is due.  

Day 1 – Today’s prompt is: Identity and Discovery

What is autism? What is it like?

When did you find out/figure it out?

How do you feel about it now?

At the most basic level, autism is a different kind of brain. In fancier terms, it is called a neurodevelopmental disability. “Neuro-developmental” means that we are talking about the way someone’s brain develops and grows. Autism is a “disability” because having a different kind of brain means that the world will be very different for you than for someone with a “typical” kind of brain, and this difference is met by barriers in many aspects of life. Autistic people experience the world differently, and as a result that experience can be challenging in some ways and it can also be wonderful in some ways. It can be so many things to many different people at different times and in different places in different ways, but it is –not-: shameful or defective or a reason to harm someone.

One way I try to explain this to people is by asking them to consider two friends who each have a computer. Friend A’s computer is running Mac OS and Friend B’s computer is running Windows. Both of these computers work, but they each do things a bit differently because the computers are set up differently. (Now, if you are biased for/against one or both of these, please set that aside for the moment for the sake of this analogy!) Is Friend A’s computer defective because it’s not running Windows? Is Friend B’s computer defective because it’s not running Mac Os? Of course not. The computers are simply set up differently. It is similar with the brain. An autistic brain is not superior to a non-autistic brain, and neither is a non-autistic brain superior to an autistic brain. Difference doesn’t mean deficiency. It’s just difference. And difference can be cool! The brain is fascinating — and respecting difference is awesome!   

I am autistic, so my brain is this kind of different. There are definitely things that are really difficult, upsetting, and frustrating for me as a result, and there are some joyful and unique things too, but overall I like my perspective and I do not want to change my brain — I just wouldn’t be me anymore!

When I was little, I thought autism simply meant you really liked water. I got this impression from television, and it made sense to me because I perceived how water was a source of fascination for many people. I did not actually learn what autism was until middle school.

It took me a long time to really come to terms with these parts of myself. I always felt like I didn’t understand what was going on socially, and I still feel that way a lot. It’s hard to keep up and know what people are really meaning if they are not saying exactly what they mean. I tend to be really literal and often only realize someone was joking or speaking figuratively after the fact.

I became fixated on language early on, and that led to my obsessiveness about word choice and my constant use of litotes (understatement). These cover up some huge fears about ambiguity and generalizations, including how to relate a thought, feeling, or experience as accurately as possible, and the obsessive hope that what other people say will be just as detailed, specific, and particular. (Hint: it won’t be!)

In general, I am a very obsessive and intense person. I am very curious and I like learning about a lot of things. I find reading Wikipedia articles and researching everything I can, no matter how minute, to be a lot of fun! A few areas of interest are pokemon, mythology, movies, and animals. I basically always have a mini Sherlock Holmes running around in my head trying to figure everything out — this takes a lot of energy and is really confusing! I don’t really have a “chill” setting on my brain. It’s sort of like a GPS that’s constantly telling you it’s “Recalculating…”! Always recalculating, always trying to figure it out!

Nowadays, my focus is to try to learn to accept myself more. When your brain is busy trying to solve everything in the world non-stop, kicking over every stone and questioning everything endlessly, it’s hard to have enough of a foundation to build some self-esteem on. I tend to be extremely critical of myself and a lot of the time I’m very aggravated with myself for not being how I imagine I –should– be. The truth is, there is no should; I just need to be myself with integrity.    

I try to do my best to help others accept themselves too. I want other people like myself to not feel so negatively toward themselves. It’s hard not to feel that way, especially in a world which actively harms the disabled, including autistic people, in so many ways. Ableism (discrimination on the basis of disability) is a huge hurdle. It’s not one I can solve, and I certainly can’t solve it alone. But I hope to find a way to create a bit of hope, pride, and resilience within myself — and within others — that can keep the anxiety, despair, and isolation at bay.

 

 

 

The Curious “Constellation” of Autism

2013-12-09 12.23.02

The allistic world seems to think about autism as a single, profound thing that adversely affects the brain and makes it do the wrong thing. But we know autism as a way of being that affects the totality of our experience, and we reject the idea that Autistic people are defective humans whose brains are simply malfunctioning. In fact, it seems that there is a particular set up of very specific characteristics that affect many of us, and these characteristics lie beyond the cardinal traits of autism itself. I tend to think of these as “add-ons” to autism. They may certainly pose challenges to us, but they are not necessarily or completely a detriment. And they’re not entirely defined or described as being part of being autistic, despite the significantly higher rates of these very specific comorbidities in autistic individuals.

So what types of things are part of the “constellation” of autism?

Sensory Processing Differences

Firstly, I believe we must address sensory processing differences. Because, in my eyes, it is definitely considered an autistic thing that a multitude of us experience, but it’s not necessarily evaluated in a diagnostic setting. However, it’s certainly possible that non-autistic people have sensory processing differences, and they may even receive a diagnosis of SPD, or Sensory Processing Disorder, or a different type of sensory difference. It is very well known that many autistic people process sensory information differently than typical non-autistic people do. Our difficulty with environments that include loud noises, many people talking at once, bright lights, background noise, and the like are almost stereotypical at this point due to how common these issues are. And because our meltdowns and shutdowns are often considered so shocking and inappropriate by allistics (non-autistics), the allistic (non-autistic) world seems to have taken note of “sensory overload”. Sensory regulation is very difficult for many of us, so autistic people can use strategies like noise cancelation or noise reduction headphones, dark sunglasses, and stimming to help process sensory information with less distress and discomfort.

Mental Health Disabilities

Next, we will talk briefly about mental illness. Autism is not a mental illness; it is a neurodevelopmental disability. However, autistic people have high rates of comorbid mental illness. This can include a multitude of mental health disabilities, including OCD (Obsessive Compulsive Disorder), forms of depression and other mood disorders, anxiety disorders (very high rates), and countless others. This does not mean that there is anything inherently wrong with Autistic people or the brains of Autistic people. More likely is that ableism, prejudice, shame, abuse, bullying, trauma, and other factors contribute to the likelihood of dealing with mental health disabilities during one’s lifetime, combined with some degree of predisposition. Mental health disabilities may also be more common in Autistic people due to differences in the way that Autistic people process, regulate, and understand their emotions. While it is not a mental illness but a neurological disability often mistaken as a mental illness, Tourette’s Syndrome can also co-occur with autism.

Synaesthesia

This next point is related to the Sensory Processing Differences that are mentioned above. Poets sometimes talk very mystically about how the senses could be perceived in novel ways, but many Autistic people literally do perceive the senses unlike others typically do. A large number of Autistic people have the neurological trait of Synaesthesia. In short, Synaesthesia is often described as the senses in the brain being “crossed,” resulting in people who can taste music, strongly sense that numbers have a gender and personality, perceive the letters of the alphabet as each having an individual color, and many many other possibilities in how one can understand the world through a unique wiring of the brain. I don’t think it’s clear exactly how this particular set up of the brain relates to the set up of the autistic brain, but it is certainly fascinating that such a high number of us see the world so uniquely.

Epilepsy

Epilepsy — a number of neurological disabilities that produce seizures — are not well understood, unfortunately. I believe this is one of the worst things that can co-occur with autism. I personally do not experience epilepsy, as a disclaimer. Seizures can be very dangerous, and even though some medications can help treat epileptic conditions, there is no real cure and not everyone can be helped by medication. Some people seek treatment through surgery or diet changes to try to control their seizures. It is also important to avoid triggers for seizures, such as lights (bright lights, flashing lights, patterns, etc.), lack of sleep and fatigue, drinking alcohol, certain foods, and certain noises. Epilepsy can also be deadly, and avoiding triggers and getting adequate treatment is no joke.

ADHD, known as Attention Deficit Hyperactivity Disorder

A person can be Autistic and have ADHD. Like autism, ADHD is a neurodevelopmental disability: a case of the brain functioning in a different way than is typical. It isn’t inherently bad, but — as with autism — people who have ADHD face challenges based on how they learn, perceive things, process information, and understand themselves and the world. While the treatment of ADHD is controversial, it does not negate the fact that ADHD exists. As with autism, no one knows the exact cause of ADHD for certain, but both are generally believed to be mostly genetic by those who subscribe to the neurodiversity paradigm. Like autism, ADHD has its own cluster of

Forms of Hypermobility and Connective Tissue Disorders

In the general population, people who experience these forms of hypermobility (ranging from hypermobility syndrome to more severe connective tissue disorders, such as Ehlers-Danlos syndrome) are very, very rare. Yet in the Autistic population, the rates are a lot higher, resulting in many instances of these traits among us. (And that is with frequent under-diagnosis and misdiagnosis of these disorders!) Hypermobility and connective tissue disorders are genetic. They do not go away with age, and they can become worse over time. As it progresses, it can make it hard for people to walk normally or to walk very far, and it can cause them a great deal of pain. Such disorders involve problems with overly flexible joints and ligaments. In addition, the skin itself may be affected. It can be unusually stretchy, unusually fragile, or bruises or scars in an atypical way. In very severe manifestations of the illness, the cardiovascular system can be affected in serious — and even life-threatening — ways.

Prosopagnosia (Face-blindness)

Have you heard of prosopagnosia? Did it sound like a strange way to experience the world that was hard for you to imagine? Many Autistic people don’t need to imagine, because this is normal for us! Prosopagnosia is the name for a neurological condition also called face-blindness: it is an impaired ability to recognize faces. Some people acquire face-blindness through a brain injury, a brain lesion, or some other problem with the brain, but Autistic people who are face-blind have a kind of prosopagnosia that they were born with. When we look at a person’s face, it’s not that we see a void or a black hole or something outlandish like that; we simply do not have the same recognition system for faces that people without prosopagnosia have. As a result, it’s hard for us to interpret, map, process, and recall faces. But if don’t recognize people the same way most do, how do we know who’s who? The answer is, sometimes we don’t! For example, I often see people in town who recognize me and come up to me to say hello. Problem is, I typically have no idea who they are! But, there are some strategies to help identify a person when you don’t recognize them. For example, the thing that helps me recognize a person the most is their hairstyle and hair color. Aside from that, I also use their height, body shape, clothing, and gait to help determine who they are. Strategies like that can help, but they are not infallible. Prosopagnosia provides a challenge to many people in many instances, but essentially it is a different way of seeing the world around you.

Other ideas

This has been a summary of just a few of the parts of the “constellation” that can extend from autism. Some can be incredibly difficult and pose serious health hazards, such as Epilepsy or Ehlers-Danlos Syndrome, while others can be more intriguing, such as the unusual sensory perceptions of Synaesthesia. Other ideas about characteristics related to autism include sleep disorders, learning differences, and gastrointestinal problems, however we have not discussed these in depth here. Some are considered controversial, such as the possible connection between gastrointestinal disorders and autism. It is important to note that none of the things we discussed in this post or mentioned in this paragraph cause autism — for example, gastrointestinal disorders do not cause autism. The various characteristics described here are simply very likely to co-occur with autism. It is a testament to the very complex and unique way that every autistic brain functions and forms connections. With regard to the severe health hazards posed to Autistic people by conditions like Epilepsy and Ehlers-Danlos Syndrome, we must emphasize that this is where funding for quality scientific research needs to go. It must be diverted away from “validating” torturous therapies, looking for “cures”, and seeking ways to detect autism in the womb in order to avoid the birth of Autistic people, and rerouted ASAP towards helping actual Autistic people with the multitude of challenges we face in this world, including the serious health conditions that can co-occur alongside our autism.

 

 

“The Accountant” Review

Hello, friends. It’s time to talk about movies. Tonight I suffered through “The Accountant” because I received free admission. When I originally posted about this movie — warning that it sounded a hell of a lot like a bunch of really bad messages about autism — I foresaw that some might insist that they could only listen seriously to someone who actually saw the movie. So in the interest of providing a real review, I decided to take the plunge and watch this movie for you all.
 
[TW: discussion of ableist film and ableist language]
 
***I must warn you that this film is neither very sensory-friendly or epileptic-safe. There are several scenes of very disorienting patterns throughout the film, and there are multiple scenes involving a rapidly flashing, very bright light. Please take precautions if you choose to watch this film.***
 
From the previews and trailers, here’s what we know about this film before going to see it: “Christian Wolff (played by Ben Affleck) is some kind of genius savant. He’s brilliant at accounting and his unparalleled skill at mathematics means that he can work for some of the most morally dubious characters the world has to offer and successfully uncook the books. But get this — he’s also a deadly assassin and a force to be reckoned with.”
 
The character of Christian Wolff is coded as and explicitly referred to as autistic. But this movie isn’t about autism. This movie is really about toxic masculinity, child abuse, violence, stereotyped portrayals of disabled people, and truth vs. bullshit. I really don’t think any of that was intentional. I would bet you that the people who made this film believe it has a sincere message about autism and neurodiversity, set against a backdrop of exciting action scenes. Yet the reality is nothing like that. It largely fails to create an interesting storyline, compelling characterization beyond hackneyed tropes and painful stereotypes, and an original enough plot so as not to be predictable or strongly reminiscent of other specific movies. The cinematography is also poor, with many scenes involving mostly shadows fighting where you cannot even tell who is who in the encounter.
 
While watching this movie, I wanted to leave very early on. Not just because of the whole autism problem here, but simply because it wasn’t very interesting. I’m a big fan of movies about crime and these are often pretty violent and definitely full of action. “The Accountant” was seriously lackluster. Casting was really boring. Everyone was white except for one character. The casting was heavily male-dominated, with men driving nearly all — if not all — of the action. Even the lone female major character was only involved because she was being blackmailed and the love interest was only involved because she was the love interest (and therefore there for the male gaze). The only disabled people in this movie were a group of amputees receiving new robotic prosthetic limbs — essentially “getting missing pieces to make them whole” as the film’s characters say (This is hardly an appropriate way to talk about physically disabled people!) — and the small handful of autistic people pictured in the film, the major one being Christian Wolff, of course.
 
So let’s talk about Wolff. As a young child, the main character is shown at a neurodevelopmental center putting together a puzzle while his parents talk to a specialist. The specialist obliquely tells Wolff’s parents that their child has autism, though the specialist does not believe in using labels for some reason. The prognosis seems to enrage the father, who says he won’t let Wolff learn at the center for the summer, in favor of relentlessly training him (abusing him) to be a homicidal machine. At the center, we see another example of an autistic person, a young woman named Justine, who seems to be intended to show a “shocking”, “scary”, and “low-functioning” side of autism. This literally only means that she is sitting in a chair stimming frequently and openly, but I don’t think many people in the audience actually understand stimming enough to know that it doesn’t mean there’s anything wrong with Justine. To them, I think the intent is to show how “mysterious” and “confusing” we are.
 
“The Accountant” is beyond exploitative. I wouldn’t be surprised if someone thought up some buzzwords like “autism” and “assassin” and decided to try to combine it into a totally misshapen and disrespectful film. This movie may have been intended to be “about” autism, but it’s definitely not written with an autistic audience in mind. In this respect, it is literally painful. The worst thing about “The Accountant” is that Wolff’s autistic traits and behaviors are played either for shock or for laughs. The most horrible thing I’ve witnessed in a long time is the actual audience LAUGHING whenever Wolff does things like misunderstand a joke, answer a rhetorical question literally, etc. It’s not like this is comedic in any sense. Wolff is clearly not trying to make a joke and/or is having difficulty with something, causing stress. It’s truly not funny. And I’m not going to publicly discuss how this affected me, but I will say that it did affect me deeply.
 
So aside from creating a character whose autistic traits (bluntness, literal thinking, misunderstanding communications, having trouble with emotions and facial expressions, etc.) are mocked as comedy by the very audience — thank you, Gavin O’Connor and Bill Dubuque — there’s the whole thing where they literally went and made Christian Wolff a violent assassin. Were autistics already dealing with the blame for many acts of violence and school shootings? You bet. So you can bet we’re fucking thrilled that Hollywood has gifted us another stoic, emotionless, killing machine. Movies aren’t just movies, kids. Media is critical to how we emotionally, socially, and intellectually understand many issues.
 
The movie does a weird thing at the end — it tries to have a message. So we’ve watched countless people die and a gazillion rounds of ammunition have been exhausted and everyone’s had a chuckle or two because autistic people are such “freaks” (the movie’s wording, not mine), and now we find out that autistics are special and wonderful and you have to help them. Oh, and they legit drop scare-statistics about autism. I cringed so hard.
 
So is this movie redeemed because Christian Wolff is a genius? I would answer with a hearty “fuck no”. It’s yet another trope that reduces us to special abilities, and turns our lives into spectacle for the non-autistic-gaze. We don’t need any special savant skills to prove our worth to you. We are enough, just being ourselves. It’s high time Hollywood knew this.
 

Making Art Out of a Meltdown: Octopus Artwork by Beth

We are glad to share with you today the artwork of contributor Beth, who is 20, self-diagnosed Autistic, and lives in Arizona. She is working as a respite caregiver and studying to become a nurse.

Beth says about her artwork: “I started drawing this when I was starting to go into a meltdown this weekend and then for kicks I made another one and gifed them both. This is what a meltdown and shutdown feels like to me. Fun fact: an octopus will often turn red when angry and white when scared.”

[IMAGE 1: A greyish octopus at the center of the image is surrounded by a cloud of grey ink and grey circles, as a swarm of sharks, angler fish, and piranhas close in on the octopus. The image gives a sense of fear and alarm.]

[IMAGE 2: A red octopus at the center of the image is surrounded by an explosion of colors: red, orange, yellow, green, blue, and purple, as a swarm of sharks, angler fish, and piranhas close in on the octopus. The image gives a sense of intense emotion and sensory overload.]unnamedunnamed-2