Month: January 2015

Today’s question is from Eve Prime:

Could you recommend any works that you think do a good job of conveying to NT people the inner lives of people on the spectrum? Ideally a short-story collection/anthology, since there are so many possible ways to experience life and autism.

Answer: Yes!

If you want a full set of my opinions on various works then you should click here and look at the “Recommended” section.

But that’s a boring answer. I don’t know of a single short-story collection/anthology that meets this need. (I’ve heard very good things about “Loud Hands: Autustic People Speaking” but I haven’t actually read it yet and it’s not fiction.)

If I was putting together such an anthology myself, then…

Well, no. If I was putting together such an anthology myself then I’d be running around soliciting people for new work, ferreting out people who have written good things in the past, and trying frantically to figure out a way to ensure that all the intersectionality and different experiences on the spectrum were covered without resorting to some kind of quota system. It would be a big job. It would result in a lot of stuff going into the anthology that doesn’t exist yet, or at least hasn’t existed where I can find it.

But in the absence of that, if I were to put together a mini-anthology of stuff I’ve read that expresses different aspects of the life experiences and inner perspectives of different autistic characters, then the first draft of the table of contents might look something like this.

(Can I put my stories in the table of contents? I would utterly totally not do this if I were making a real anthology, but if we’re just talking about stuff to read, I think I am going to sneak a couple in. You can totally ignore those ones if you feel this is gauche.)

• Emily Page Ballou, “The Real Girl” and “The Imaginary Girl” [poetry: childhood, expectations, conformity]
• Ada Hoffmann, “You Have to Follow the Rules” [fiction: childhood, special interests, being talked over]
• Meda Kahn, “That’s Entertainment” [fiction: institutionalization, being laughed at]
• Nicole Cipri, “A Silly Love Story” [fiction: college, romance]
• Lucas Scheelk, “Dear Allistic, Love, Autistic” [prose poetry: romance and relationships]
• Cynthia Kim, “Echolalia and Scripting: Straddling the Border of Functional Language” [personal essay: communication, speech, relationships]
• Tina Gower, “Twelve Seconds” [fiction: jobs, effects of conformity training in adults]
• Ada Hoffmann, “Turning to Stone” [poetry: sensory overload]
• S.R. Salas, “On Being an Empath” [personal essay: empathy and social cognition]
• Luna Lindsey, “Meltdown in Freezer Three” [fiction: animism/personification, non-verbal thinking styles]
• Savannah Logsdon-Breakstone, “Seep” [poetry: suppression of stims and natural movement]
• Meda Kahn, “Difference of Opinion” [fiction: very intense ableism and responses to it, forced medical procedures, being an adult and falling in love when very visibly disabled/nonspeaking, also I love this story]
• E, “Undercover Autistic” [personal essay: navigating the world of passing and disclosure]
• Luna Lindsey, “Touch of Tides” [fiction: jobs, research, and workplace interactions from a more outwardly successful character’s perspective]

You’ll notice that I’ve supplemented the fiction list with a few essays and blog posts available online when there was an issue I wanted to include but didn’t have a good story or poem for. And there are many more blogs and essays I could have added. If you’re paying close attention you’ll also notice that this list is not very intersectional. If you look back in my autism news posts you’ll find articles about autism and race, gender (although my list is mostly female anyway so that should give you a start on that issue), sexual orientation, and other differences. You’ll also find many good articles on what it’s like to be autistic and go through specific challenging experiences such as grief, depression, burnout, bullying, intensive ABA and childhood abuse – as well as things like parenthood, religion, and being an activist. I didn’t add all of these things to the list simply because then the number of articles on the list would have ended up overwhelming everything else, and that’s not what you asked for! But they are worth reading!

What do you guys think of this list? Do you have more story and poetry recommendations? Share ’em in the comments! If they are new to me, I might even end up reviewing them later!

Today’s question is by Andi C Buchanan:

This is a bit my pet topic at the moment, so I’d be really interested to hear your thoughts: is it useful/helpful/important/problematic to diagnose fictional characters as autistic where the author has not signified them as such (and particularly in works written before such diagnoses/labels/identities existed), and how does this tie in with discussion of the validity of self versus professional diagnosis?

This is a question where the answer seemed obvious to me at first (YES OF COURSE you can diagnose fictional characters), but I’m struggling with how to express it.

Some thoughts:

• It is important to be able to identify with people in the media who are like you in some way, especially if it’s a socially stigmatized way and the character is a positive representation
• Some authors write characters that are marked as autistic, but write them in really problematic or insulting ways
• Some authors write characters that are marked as autistic and are sort of okay, but are full of the medical model and strongly othered or stereotyped
• Some authors write characters that are cool, and behave a lot like the way an autistic person would behave in real life
• Some authors write characters that are cool, and behave a little bit according to autistic stereotypes, and a little bit not, and are likely not an accurate representation, but are cool enough and just close enough to being autistic that many autistic readers really strongly want to identify with them (I think this is what is going on with Sherlock fandom, for instance)
• Sometimes these authors with cool characters mark the character as autistic, and sometimes they don’t
• If we say that we can’t armchair diagnose people, we are effectively saying that autistic people are allowed to identify with the really problematic, medical-model characters, but not with the cool characters who act a lot like good autism representation but happen not to be explicitly marked that way
• That seems obviously wrong to me

Also:

• There are various reasons why an author might write an autistic-seeming character but not mark them as autistic
• The author might strongly believe that the character is not supposed to be autistic
• The author might be trying to write about a related neurotype which is not quite autism but very similar
• The author might not know enough about autism to know that their character seems autistic
• The author might be afraid of getting into big discussions of disability politics, and might think that the only way to avoid these is to avoid explicitly marking the character
• The author might be afraid of not selling as many books (or getting as many ratings, or whatever) if they start explicitly talking about autism
• There are lots of other reasons
• Just because a character is not marked as autistic does not necessarily mean that diagnosing them is a violation of what the author intended
• On TV there are also characters who are created by more than one person – for instance, written by a team of writers and then brought to life by an actor
• The different people involved in creating a character might have different opinions about whether the character is autistic
• (This is part of what’s going on with Sheldon Cooper, for instance)
• So there isn’t even necessarily one single author with one single intent that readers must adhere to

And:

• People in fandom have “headcanon” and infer things or even just make things up about their favourite characters all the time
• Even if it blatantly contradicts what the author intended
• If you think headcanon is okay but head-diagnosis is not, then you have a double standard
• Because a fan diagnosis is really just headcanon about what a character’s neurotype might be
• The only reason to object to fan diagnosis but not headcanon is if you think disability is somehow sacred and special and can only ever be talked about by experts lest we Get Something Wrong
• But for a lot of us, disability is just a part of life
• And experts are sometimes wrong, especially if they are stuck in the medical model
• Autism experts do and say a lot of hurtful things (#notallautismexperts but a lot of them do this) and are not always aware of the full lived experience of the people they study – which is why we have so much self-diagnosis and so many people slipping through the diagnosis cracks in the first place
• Given their track record in real life, I don’t see any reason to let such experts dictate what we can and can’t have in our headcanon

This is not to say that headcanon can’t be problematic. Like if someone has a terrible stereotype in their head and diagnoses people according to the terrible stereotype even if they act nothing like how a real autistic person would act. But I think that when problems like that happen, they are best dealt with individually by the rest of fandom, not by some pronouncement that you Shouldn’t Diagnose Fictional People Ever.

I also think that the benefit of us getting to decide for ourselves what characters we identify with outweighs the cost of any problematic headcanons that might get thrown around too.

So that’s what I am thinking, in general.

(January is now half over, but if you’re late to the party, you can still pick a January blogging topic here!)

Today’s question is a second one from Joyousmenma93:

examples of infantilizing disabled people and the evils of doing so.

Whee! The ideas behind this topic are actually ideas that interest me a great deal.

Since I was just talking about narratives in my last post, it might help to think of infantilization as a narrative. The narrative is called Disabled People Are Children, or more precisely, “disabled adults are still basically children, and should be treated that way.”

To understand why so many people think this way, we need to do a little bit of Developmental Psychology.

From birth to adulthood, most people grow, and part of this growth is learning skills. In any given culture, there is a specific set of skills – intellectual, physical, practical, emotional, social – that almost every abled person learns. And most abled people will learn these skills at about the same rate. For example, there is a certain age at which most babies learn to crawl and then walk.

People developed the concept of IQ by essentially measuring a person’s skills and comparing them to the skills of other people their age. People who had learned more than average for their age had a higher IQ, and people who had learned less than average had a lower one.

Psychologists noticed that some people were behind average for their age in many different skills at once. So they started talking about “mental age”. For example, if someone was answering IQ questions in the way that an average eight-year-old would, psychologists would say they had a “mental age” of eight, even if they were actually six or twelve or some other age.

There is a very, very limited sense in which talking about people in these terms can be useful. For example, if someone reads about as well as an average 10-year-old, and you have important information to write down for them, you’d want to make sure that it is written in a way that an average 10-year-old could understand. As long as ages are only benchmarks of particular skills and nothing else – not value judgements, not statements of the person’s true essence, etc – they can be a useful shorthand for talking about these skills.

In fact, we have a cultural understanding that sometimes people don’t act exactly as we’d expect for their age, and that this can be okay. We use phrases like “He’s young at heart” or “She has an old soul” to say that someone acts in a way we don’t associate with their real age.

The problem with all this, though, is when we start thinking that people with the mental skills of children are actually children. Because in real life, a child is not just a mini person whose skills happen to be less developed. A child is a person who has to be cared for and controlled by others.

As adults, we have to keep children safe, even if that means sometimes doing things that they don’t like. We decide what they should be learning in school, what they should be eating, where and when they can play and whom they can and can’t play with. We decide what it is and isn’t appropriate for them to watch or read. We try to hide information from them about how the world works. When they are sick, we talk to doctors about how they are feeling and make the appropriate medical decisions. It’s possible to make these decisions in a bad or abusive way, but even a good parent has to make them a lot of the time, especially with a young child.

It’s acceptable in our culture (although I wish it wasn’t) to talk to children in a condescending, sing-song voice, to ignore their stated wishes, and to make all sorts of decisions for their own good regardless of how they feel about it.

But it’s not appropriate to treat an adult this way – even if they are a disabled adult. A disabled adult may not have a very high IQ, or they may need help with certain things that abled grown-ups don’t need help with, but that doesn’t mean it’s okay to make decisions for them in the way we would do for a child.

And when people believe that Disabled People Are Children, they do exactly that.

Here is a very lurid example. It’s not okay for children to have sex. Having sex with a child is a terrible crime. So sometimes, when people believe that Disabled People Are Children, they try to stop disabled people from having sex – even when the disabled people are grown-ups who can clearly communicate that they would like to. This has bad consequences, like people in institutions being forcibly separated from the people they fall in love with, or even forcibly sterilized. Disabled people often aren’t given sex education when their abled peers are, because the people caring for them think it’s too icky and too “mature”, and then this results in the disabled people not knowing how to have sex safely when they want to, and not knowing how to recognize and report sexual abuse.

This is not okay. It’s also not okay for people to talk over disabled adults, ignore their stated wishes, make their medical and living decisions for them, stop them from reading or seeing or saying things that might be “inappropriate”, or control their lives in countless other ways. Yet people do these things, all the time, because they believe that Disabled People Are Children and that they have to be cared for as one would for a child.

People who have survived this sort of behaviour are often really, really sensitive about being referred to as children. Even if you talk about their age in a way that would be ok for most abled people – like calling them “young at heart” – some people will be really upset by this, because it’s too close to home, and too many people have hurt them by genuinely treating them like children.

Not everyone who is disabled has been through this specific set of experiences. I haven’t, and so I don’t really mind when people point out things I do that are a little bit childish, or ways in which I seem young. But I’m pretty lucky not to have had those experiences.

Moreover, when you’re writing a story, you have to think not just about who will be upset, but about what narratives you are reinforcing. If you describe disabled characters in a way that could make people think they are really more like children than adults, then you are in danger of reinforcing the Disabled People Are Children narrative.

Ways of doing this include:

• Directly describing your disabled characters as childish, or as “like children”
• Describing your disabled characters in ways that are usually only used for children, like by calling them little and cute a lot
• Uncritically using concepts like “mental age” that are used to reinforce the Disabled People Are Children narrative in real life
• Showing abled characters treating your disabled characters like children, and not clearly showing why this isn’t okay
• Drawing excessive attention to childlike, youthful, or immature mannerisms in a disabled character
• Drawing excessive attention to childlike interests and behaviours, such as playing with toys, and not also showing that the disabled person has grown-up interests, too. (It’s okay for grown-ups to play with toys! And abled grown-ups can do this too! But if it is written carelessly with a disabled character, it can be used as a shorthand for the character being “really a child”, and that’s not okay. If you don’t understand the distinction here, you might want to steer clear of it for now.)
• Assuming that a disabled character can’t understand their situation well enough to make their own decisions

All of these things can be considered infantilization, and they’re not good ideas.

The bottom line is that disabled grown-ups are grown-ups, and they should be treated that way. If you’re not giving them every bit as much respect as you would give an abled grown-up, you’re probably doing it wrong.

Today’s question is from Joyousmenma93.

What are considered ableist portrayals of disabled people in media, like having all people hate them just for being there, making them into geniuses, etc. I’d love to see your thoughts on what portrayals of disabled people (autism or not) are considered ableist. I got some backlash similar to this and would love to see something like this covered.

WELLP.

If you want me to sit down in the length of one blog post and explain to you everything about how ableism in the media works in one sitting, it’s not gonna happen. Not because I don’t want to or don’t care, or because I’m one of those people who hates explaining 101-level stuff, but because it’s just too big a topic. I can’t put everything in one blog post, and frankly, I don’t even understand everything that could be put in one blog post.

The other reason I can’t explain all of ableism to you in one blog post is because writing a laundry list of Bad Things You Should Never, Ever Write is not actually the best way to explain how ableism works. On any such list, however carefully crafted, there will be some things with exceptions, and some things that get left out, and some things that disabled people are legitimately going to disagree on (even within the same disability). Some things are pretty crappy however you look at them, but some things will horribly offend some disabled people while others consider them true and important. And that’s just scratching the surface of the ways in which people can disagree.

When you’re talking about ableism, or any -ism, you’re talking about people’s lives. People’s lives are fucking complicated and full of nuance, and it’s hard to get that nuance across in a list of rules.

That’s why there’s really no substitute for learning to think about these things for yourself, to research them very carefully, and to form your own opinions.

But learning to do that is hard. It takes a lot of work. It’s ok to be confused while you are learning to do that.

Here’s one principle which might help you to think about things, and to make sense of what people have told you.

Ableism – any -ism, for that matter – is about narratives. Abled people treat disabled people poorly because they have a narrative in their head about how disabled people should be treated, or what disability means, or how valuable (or not valuable) disabled people are. And those narratives come from somewhere.

Fiction isn’t the only place where we get our narratives, but it’s an important one, especially for people who haven’t had informative personal experiences in reality. If you’ve never seen a person with X Condition, but you’ve read a book about a person with X Condition, then your thoughts about what X Condition is like will mostly come from that book, even if you know that the book is fiction and the person isn’t real.

That’s why it’s really important for fiction writers to ask ourselves some difficult questions about narratives. To be able to write disability responsibly, you have to be able to at least begin to think about the following questions:

1. What are the major narratives that are told about people with this disability today?

2. What are the effects of these narratives? Which ones cause harm and which ones are helpful?

3. Which of these narratives does my story reinforce, and why? Are these good narratives to reinforce, or harmful ones?

4. Which of these narratives does my story subvert, and why?

A narrative that encourages people to hurt disabled people is ableist. So a story that reinforces one of these narratives is also ableist.

In other words, it’s not about “you can never write a character who does X” or “you can never write a story where Y happens”. It’s about context, and the larger picture, and about what you expect your readers to come away thinking and feeling.

Let’s go through an example. In the real world, one of the narratives that causes a lot of problems for autistic people goes something like this:

“Autism is awful. It is super incredibly terrible to be autistic. Autistic people are always miserable and so are their families for having to take care of them and this awful misery is an inherent part of how autism works, so we have to get rid of autism as soon as possible – there is no other way to stop the awfulness.”

This is a narrative that real people believe in the real world. Autism Speaks is famous for throwing it around a lot, but not to single them out – there are a lot of people who believe this. It is also a narrative that has effects, usually negative effects, on autistic people in the real world.

People put autistic children into intensive and abusive therapies for many hours a week, or give them chelation and other physically harmful quack treatments, because Autism Is Awful and so it makes sense to try to get rid of it by any means necessary.

People hurt or kill their autistic children and everybody feels sorry for them because Autism Is So Awful, it’s no wonder they snapped.

Autism treatments focus on teaching autistic people to look normal, even if that’s the opposite of what they need in order to thrive and be happy and productive, because Autism Is Awful and the only way to treat something awful is to try to make it go away.

(Also people are dying of diseases that should have been eradicated through vaccination by now, because a scientist made up a fake story and pretended that vaccines sometimes caused autism, and Autism Is So Awful that a fake risk of getting autism is worse than a real risk of dying from a virulent infectious disease.)

Autistic people learn to hate themselves and be ashamed all the time because they have learned that Autism Is Awful and whenever someone around them reacts badly to them, it must be the autism’s fault.

Ironically, some of the people who are worst affected by this narrative are autistic people who are miserable and are having a terrible time. They are not miserable because misery is an inherent part of how autism works. They are miserable because things aren’t set up properly and no one around them is able to meet their needs. And believing the Autism Is Awful narrative makes it harder, not easier, for people to figure out how to do that.

So let’s say you are writing a story about an autistic person. You need to be aware that the Autism Is Awful narrative exists in the world and has these effects on people.

And you need to ask, “Is my story going to help people believe that Autism Is Awful? Or is it going to help them believe something else?”

If your story is full of autistic people being miserable burdens on their miserable families, then it’s very likely to be reinforcing the Autism Is Awful narrative.

But if your story shows autistic people and their families not being miserable, or if your story questions where the misery comes from and shows it coming from societal attitudes or some other outside source, then people can come away from your story being less likely to believe that Autism Is Awful.

People learn from what they read, and your story can teach them good lessons or bad ones.

Now, the hard part, of course, is that Autism Is Awful isn’t the only narrative out there. It’s not even the only bad narrative out there. Here are some other bad narratives about autism that you’ll frequently encounter:

• “Autistic people have no empathy or feelings.”
• “Autistic people can’t understand art, love, religion, etc.”
• “People who say they’re autistic are just faking.”
• “‘High-functioning’ people are completely different from ‘low-functioning’ ones, and if you can communicate at all in any way then you’re ‘high-functioning’, so if you are caring for a ‘low-functioning’ person you don’t have to listen to anything any autistic person says about it.”
• “All autistic people are rude and annoying.”
• “In order to have real, meaningful connections with others, you need to do specific social things in ways that are painful and upsetting to most autistic people.”
• “If an autistic person is bullied, it’s because they lack social skills, not because the bullies are being mean and unreasonable.”

This is just a few and I am missing many. All of them are hurtful in different ways.

The only way to get a feel for these narratives and how they work, apart from being autistic yourself (and even an autistic person will likely miss a few on their own) is to do a lot of research. Look up the writing of autistic people, or people with whatever disability you are researching – not just the writing of doctors who study it. Read lots of it by lots of different people. Find commonalities in their experience and listen to their explanations of why these commonalities happen. If possible, read their reviews of other people’s stories; find out what makes them mad when they read it, and what makes many of them go “YES, THIS.” Read this stuff and think about it until you can understand the principles behind how it works.

All of this will take time, but if you can do it, you’ll have something much more valuable than a laundry list of What Not To Do. You’ll have a deep and nuanced understanding of the subject matter.

And then you’ll be able to form your own opinions about what’s ableist, and about what you want to do and not do in your stories.

Today’s question is from Chordatesrock:

The reasons why someone writing a fictional autistic character would write the character as being able to speak or not being able to speak, and how that ends up forced into being a political decision in a way that the actual division of ability in real life is obviously not. Or… manifestations of disability in fiction, within specific diagnostic categories.

This is a good question! But I actually don’t see authors as being forced to make their characters’ speech abilities a political decision. (Except in the sense that the personal is political, everything is political, etc. You can’t avoid that one.) What I do see is that there are trends in how these decisions are made, and these trends have political implications.

The speaking / not speaking dichotomy is very strongly tied to the “high-functioning” / “low-functioning” binary. It’s more useful than functioning labels, because being able to speak or not speak is an actual thing that exists, not an artificial diagnostic category. Still, in practice, people often get diagnosed as “high” or “low” functioning based on whether or not they can speak. And so presenting someone as able or unable to speak often carries implicitly a lot of the same baggage as a functioning label.

As a result, what we see in most media is pretty predictable. Characters who can speak get written with all of the “high-functioning” stereotypes: clever, quirky, callous, annoying, and basically able to take care of themselves but failing comically in social situations. Characters who can’t speak are written as helpless, pitiable, disturbing, or at best the focus of inspiration porn.

Stories that break these stereotypes are often very explicitly political, as in “Difference of Opinion” by Meda Kahn, in which an autonomous but non-speaking character’s struggle against ableism is the whole point.

Writing a speaking or non-speaking character can be a political choice for other reasons too. In the worst case, non-speaking characters can be the focus of Autism Speaks-esque anti-autism propaganda. The character is portrayed as completely helpless, burdensome, and miserable in every possible area – which, of course, includes a lack of speech – and the message is, “See, this is what autism is REALLY like.”In cure decision stories, speech becomes kind of a big deal. A character can be portrayed as speaking in order to make it more credible that they’d be happy the way they are, or as non-speaking for the opposite reason – to make the message come across that much more strongly. (Both of these are pretty problematic, as are cure decision stories in general, but they are the actions of authors who are at least trying.)

Of course, in reality, there aren’t just two categories. Functional speech is made up of a number of receptive and expressive sub-skills. Many of us (including myself) appear to speak normally but have partial or intermittent problems with one or more of these sub-skills. And many are genuinely in the middle somewhere, having some speech ability but not enough to perform all the speech tasks that are routinely expected of us.

The stories I’ve seen that deal with these subtleties are usually by autistic people. “Meltdown in Freezer Three” by Luna Lindsey has a protagonist whose speech is extant, but visibly (audibly?) different. Draz from “Kea’s Flight” has specific speech differences including difficulties with word finding.

Here are some speech related things that I’d like to see more of in fiction:

• Echolalia, scripting, and other specifically non-neurotypical forms of speech
• Non-speaking protagonists who are cool and have agency
• Characters who are minimally or moderately verbal
• Use of AAC by both speaking and non-speaking characters
• Characters who can both speak at a similar level of ability, but are wildly different from each other in some other area(s). Or, even better, a character who can speak articulately (by NT definitions of the term) but has more trouble in another important area than the non-speaking character. In other words, speech very blatantly NOT being used as a proxy for one’s level of ability in every other area, ever.

(You can still pick your own January blogging topic here!)