Ass-Backwards

I've been thinking lately about how how often society gets things ass-backwards.

Everyday people, such as parents, teachers, and peers come to conclusions about invisible differences and disabilities for ridiculous-- sometimes backwards-- reasons. That is, they mistake genetics for environment, or even effect for cause. Even psychologists and other experts have done it as well. 

Mistaking Genetics for Environment

In the earlier part of the 20th century, psychologists "blamed" autism on "refrigerator parents", particularly mothers. These mothers who were perceived as cold and distant were implicated in making their children cold and distant-- a description that is, of course, rooted in profound ignorance and narrow-mindedness of what is considered "normal." 

We now know that autism has a strong genetic component, and that whatever traits these kids might have are not the result of failing to bond with their parents. In fact, the bond between autistic kids and their parents might be strong. It's just that autistic parents tend to produce autistic kids-- because of genetics. And putting most or all of the blame of the mother is clearly rooted in sexism. Women in particular are expected to be what I call a "charismatic, eight-armed woman", happily tending to multiple people's needs. In my experience, people don't expect this of men. So if a woman is not acting like the social octopus that people expect, she might be more likely to be seen as "cold" and "distant"-- the mythological "refrigerator mother." Even if the father has the same traits, he might not be labeled as a "refrigerator parent."

Mistaking Effect for Cause

I also remember reading somewhere* about the infamous "distant fathers" and "overbearing mothers" of effeminate boys who grew up to be gay. Back when psychologists pathologized homosexuality, many believed that the father was not spending enough time with his son and the mother was spending too much time with him, thus making these boys more effeminate. There have been many cases of "distant fathers" and "overbearing mothers" in the cases of effeminate young boys who grew up to be gay (though I suspect this is less true today), but it is not the cause but the effect. If I remember what I read correctly, it seems that these fathers counted on raising a son with whom they'd bond over football or mechanics, but instead had a son who liked to play with dolls. In a world that puts strong emphasis on masculinity in boys and men, disappointed fathers didn't know how to bond with their son and ended up not spending much time with them. The mothers ended up essentially filling the role of both parents.

I have experience with the ass-backwards mistaking effect for cause in my own life. When I was growing up, I hardly watched anything that was animated until I saw the first two Back to the Future films at age nine. Even then, I still preferred watching animation and that is what I almost always settled on while flipping through the channels. Between my social difficulties and my problems comprehending some live-action movies and plays-- that is, to the point where sometimes I literally had no idea what the story was about-- my parents (especially my mother) blamed my preference for animation. They believed that I was not challenging my brain enough and so my comprehension of social situations and movies was underdeveloped.

They got it ass-backwards.

As it turns out, many people on the autism spectrum, as well as people with prosopagnosia-- kids and adults-- have a strong preference for animation. Why? Well, it's simple. You get more information about a character and his motivation when he is a brightly-colored individual who makes broad gestures and is easier to differentiate from others. This is especially critical when you, like me, are a prosopagnosiac in addition to being autistic and have a hard time learning new faces. To someone on the autism spectrum-- especially if that person has prosopagnosia-- characters in live-action movies might seem like faceless naked mole rats in drab clothing. Is it any wonder then that Back to the Future was what made me more open to watching live-action movies? Doc Brown, with his wild hair, brightly colored clothing, and broad gestures is much easier to read than many movie characters.

So the short answer is that my preference for animation was the result, rather than the cause, of my social problems and difficulties following certain movies. 

I think this type of ass-backwards reasoning is finally starting to change and is being seen for the nonsense that it is. Please keep this in mind when trying to understand your autistic kids-- or adult friends.

If anybody has a similar story about this type of ass-backwards reasoning, particularly as it relates to autism, let me know in the comments!

*I thought it was in Judith Rich Harris's The Nurture Assumption, but I can't seem to find the reference in the book. Maybe it was in something that Steven Pinker wrote. If anybody knows what I'm talking about, please leave a comment.

Is It Ableism? Part 12: It's Complicated

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

Part 6: Accommodation 

Part 7: Infantilization

Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

Part 9: Unintentional Gaslighting

Part 10: Challenging Comfort Zones

Part 11: Advocating for Your Needs

We have unpacked a lot about ableism in this series, and it's only natural that it took a large number of posts to do so. It is a very broad topic with a lot that deserves examination. There is much more I wish I could have covered: For example, what's the difference between a variation in brain function and a disability in brain function? Is it all a matter of opinion? Should it even be defined? And are there limits to accommodation, let alone "reasonable" accommodation? These are endless conversations, and maybe I will tackle them sometime. However, I hope that I managed to elucidate a number of other issues that I feel are overlooked when discussing ableism. I also hope that I have raised your consciousness in the kinds of things that could be classified as ableist. However, it is here that I would like to urge you to be cautious when labeling attitudes or actions of people as ableist-- let alone people themselves as ableist.

Ableism is a complicated, nuanced issue, whether it's about how it relates to autistic people or people with other disabilities. As I've alluded to in this series-- and in a recent post, "Can We Stop Alienating Each Other?"-- I feel that "ableist" and "ableism" are words that, while they have their place, are unfortunately overused to the point where they feel more like a thought-terminating cliché than a complex concept worth examining. I see this a lot in autism groups on Facebook and in social justice circles in general. What has become apparent lately is that there seems to be a kind of orthodoxy in these groups. That is, there has to be a universally-agreed-upon definition of what constitutes ableism that cannot be questioned unless that person wants to be stamped with a scarlet letter of sorts.

I see accusations of ableism hurled around when, God forbid, someone in an autism group says that they prefer the word "Asperger's" instead of autism to describe themselves. One reason this upsets so many people is that "Asperger's" is a word used to describe someone on the autism spectrum who is considered "high functioning." People who object to the use of "Asperger's" often tell the person that they feel superior to "lower-functioning" autistic people, whom they want to distance themselves from. They accuse the person of ableism, internalized ableism, and all-around bigotry. Whether or not there is any truth to this is a discussion worth having, but it's not going to work unless the discussion will be civil.

Right now I can hear objections to my comments about "civil discussion" in the form of accusations of ableism: What about people who have been traumatized when they were classified as "low functioning" and therefore "hopeless"? One or more of those people might have PTSD and cannot help but have an angry response. How dare I demand a particular ability that they might not have? 

Again, a discussion worth having... and it's important to note that not everybody has experienced that kind of trauma or, if they have, they might not have PTSD from it. People who can handle the discussion should have it, but the people who can't might do well to turn off notifications for the thread. Is that an ableist statement? 

What about the common accusations of internalized ableism?

Is it internalized ableism for me to be glad I've never had sensory issues and to wish I didn't have prosopagnosia? Is it internalized ableism for me to say I'm glad I don't need to use a wheelchair? What about someone who needs a wheelchair and wishes they didn't? Years ago, my mom, a retired teacher, told me a story about how one of her students, a wheelchair user, wrote about how he often had dreams about being able to run down a football field. He was always devastated when he woke up from these dreams, as he didn't know what it was like to be able to run, or even walk. Is he guilty of internalized ableism? I think not. But if you think so, then probably every one of us-- including people with disabilities--  is guilty of internalized ableism on some level. And at that point, the term ceases to have meaning. In any case, in none of these situations am I-- or my mom's former student-- making declarations of inferiority to people without these disabilities. We just prefer we didn't have them.

I have even heard stories about people who have confessed to being worried that some activity they do will lead to an accident that will make them need a wheelchair. Then they feel guilty because they think it's a form of internalized ableism. I'm sorry, but that's absolutely ridiculous. It's nice to be able to walk. What's ableism is looking down on people who can't!

What if the late astrophysicist Stephen Hawking (who likely wished he hadn't become paralyzed and had to use a wheelchair, but that's a different point than the one I'm about to make), had gotten into an accident that affected his cognitive function? Let's say his nonverbal IQ score, which was apparently an unbelievable 160, dropped to 102. IQ isn't everything, but 102 is not enough to handle something as intellectually demanding as astrophysics. When I was a kid, my nonverbal IQ score was actually measured at 102 (I have nonverbal learning disability, like many of us on the spectrum). And guess what? I wouldn't blame Hawking for being devastated if this happened to him, and I wouldn't consider it ableism, internalized or otherwise. Because you know what? It sucks to be able to lose the ability to do something, especially if that ability was important to you.

There are some truths that we can't pretend don't exist. Like it or not, every interaction that we have with one another assumes some level of ability. By writing this blog post, I am assuming that you can see and that you can read. Or, at least I'm assuming that if you can't do one or both that someone-- or something, like the voice function on your device-- is reading it to you. I'm also assuming that you know how to turn on your device. I also assume that your reading comprehension is within typical or near-typical limits. Otherwise, you might not be able to understand the blog post. Is it ableist for me to make these assumptions?

Maybe in the Facebook groups where people shout "ableism!" like it's going out of style, they're also assuming that everybody in the group can read. How do they know there isn't someone in the group who can't read for some reason and is just there because they like looking at the color scheme in the group, and just being there makes them feel like they belong? Nobody knows for certain that this isn't happening.

We may be wrong sometimes when we make assumptions about other people's abilities, and that's okay as long as we are open to learning. For instance, someone might have a knee-jerk reaction when witnessing a ten-year-old having a meltdown in the store because his parents won't buy him the toy he wanted. She might assume that the kid is spoiled and has parents who normally cater to his every whim. She might turn to her friend, an adult on the autism spectrum, and say, "That kid is throwing a tantrum! He wasn't brought up right!" The friend might say, "That's possible-- or it could be that he's autistic. Maybe he's having a meltdown because he's been overly invested in this toy for months, and he's devastated now that he is learning that he can't get it. If you think this is hard for you to witness, think how hard it is for him to experience it." If she is open to what her friend tells her and is willing to learn from her insight, then that's a good thing!

What about ableist language? I've heard arguments that saying, "This movie is stupid," is ableist because of the word "stupid." I don't think so, because, as I stated in Part 8, this is a word that is used to describe actions or attitudes when a person with average or above average intelligence was doing them clearly knew better-- or, in the case of a movie, the word just means it was badly written. It's not a medical term, and most people understand that it's lousy to use it to describe someone with an intellectual disability. "Retarded," however, is a different matter, because it has been a medical term in living memory. 

There is no limit to what we could consider ableist. Maybe it's ableist to not drink during pregnancy because the alcohol could cause the baby to have an intellectual disability. Hell, by extension it means that the mother is ableist for valuing intelligence and wanting her child to not struggle in school. You see how ridiculous this sounds? 

And one more thing that I want to point out is that none of us have 20/20 foresight. There are many things that parents, teachers, camp counselors, and peers said to me in the '90s that would be considered ableist with a 21st-century awareness and understanding of autism and other conditions. As I've said, I believe that the appropriate application of the label of "ableism" is contingent upon the person knowing that a disability is present, and therefore I have to let some of these people off the hook. We as a society are learning more, and this is a sign of progress. There is no doubt in my mind that we are-- hell, I am-- saying things today that will be considered ableist in twenty years in light of a disability that hasn't been identified yet.

I am open to having my mind changed on this post-- hell, on all of the posts in this series. I might look back at this series in a month, a year, a decade and realize that there are holes in my arguments and that maybe there would be a better word than "ableism" to describe the overarching theme of this series. And just like with the book that I talked about in Part 4, I might end up cringing at some of what I have written. 

People evolve and their perceptions evolve, and we have to let them. 

Is It Ableism? Part 10: Challenging Comfort Zones

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

Part 6: Accommodation 

Part 7: Infantilization

Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

Part 9: Unintentional Gaslighting

I have already covered quite a bit in this series, which is nearing the end (I anticipate twelve installments). In the last post, I discussed unintentional gaslighting, in which well-meaning people who want to help end up causing someone else (usually autistic) to doubt their own experiences and perceptions. In reference to anxiety-inducing situations, I vaguely alluded to the idea of pushing one's comfort zone as well as the potential limits of that. Not the smoothest segue, but I needed to get here somehow, and this very-sticky topic needs to be covered.

Part 1 and Part 5, I talked about the idea that autism is something that needs to be accepted and accommodated, not something for autistic people to "overcome." We would never tell a wheelchair user that they needed to "overcome" their disability and learn to walk, would we? No. However, the brain is more complex and pliable than a pair of legs; it is constantly evolving throughout the person's life. Like autism, another neurodevelopmental disability-- dyslexia-- exists on a spectrum. A typically-developing child who can only recognize her own name in writing at age four is most likely comfortably reading middle-grade novels at age ten. Perhaps a dyslexic child still couldn't even recognize his own name in writing at age four is still struggling with first-grade level books at age ten. A child with severe dyslexia might never learn how to read and will need to listen to audiobooks.* The problem is, others don't necessarily know where on the spectrum the kid falls, and the kid might not even know themselves. So what do we do? We challenge their comfort zones to see what they're capable of and help their brain evolve. 

Right now I can hear the accusations of ableism coming in because I even suggested challenging people's comfort zones. In fact, I wager I'm going to lose a huge part of my audience from this blog post. Well, as I said, the brain is forever evolving. It's a good idea to challenge people's comfort zones to facilitate that evolution, but also realize the potential limitations of doing so. The goal should never be to make someone with a neurodevelopmental disability "indistinguishable" from their typically-developing peers. Giving a chemistry textbook to a fourteen-year-old who struggled with first-grade literature when he was ten is not going to be helpful. Instead, you might give this kid the first Harry Potter book.** If Harry Potter turns out to be too difficult, don't force the issue; give him something easier. It's a challenge to the kid's comfort zone, but also a form of accommodation.

How does this translate to autism? Unfortunately, growing up I felt like my parents tried the autism equivalent of giving a chemistry book to a dyslexic child. Like many people on the autism spectrum, I have prosopagnosia, which sometimes makes it difficult for me to follow what I'm watching in live-action movies. Unfortunately, prosopagnosia was something I also wasn't identified with during childhood. When I was fourteen, my mom-- an English teacher-- seemed to think that the answer to this difficulty was not to show me something with adult themes that was palatable to me-- Stand by Me, a very adult movie with kids as main characters, seems like an obvious choice in retrospect-- but to take me to a black box production of Shakespeare's Macbeth, in which a few actors played multiple parts and didn't even wear any costumes. It didn't help. I couldn't follow the story, and at the end I just felt stupid and that there was something wrong with me for not having the gushing reaction that Mom expected. This felt like being thrown in the deep end of a pool and being told I'd better learn to swim.

Many people on the spectrum have reported similar attitudes from others about making eye contact. While my discomfort with eye contact was limited to unfamiliar adults and was something I naturally moved past around adolescence, many people in autism groups on Facebook have talked about finding eye contact not uncomfortable, but literally painful-- and no amount of intervention changed anything. Some of them even discussed being traumatized by repeated episodes of pressured, forced eye contact. With today's knowledge about autism, it would make sense to look at each kid individually and see what their potential is and what their limitations are. For me and others like me, perhaps making eye contact with a teacher into a fun game would have helped me become comfortable with this task earlier than I did. Some, however, might recoil at this game, no matter how much fun you think it is, and just not be able to do it. In that case, it's time for you to provide more accommodation, in the form of accepting that the kid-- or adult, if eye contact doesn't improve-- cannot make eye contact. Allow them to show you in their own way that they're listening. Maybe this could be in the form of the person holding up a hand. In any case, the autistic person needs to be the one to decide what that gesture is.

Most importantly, accept that someone's improvement in a skillset is going to improve (or not) at the rate that it's going to improve at, regardless of what you think is acceptable.

Oh, what's that? Only we have to have our comfort zones challenged, because we're "broken", right? Wrong. Everybody needs to have their comfort zones challenged, whether or not they have a disability. In fact, I think one of the biggest mistakes we make as a society is not regularly challenging kids for whom everything is easy. Maybe a child grew up always being the smartest person in all his classes and everyone-- including him-- knew it. He was enrolled in AP Calculus and spent all evening with his girlfriend instead of doing his homework. No problem! The next day at school he did his homework during lunch, less than an hour before math class, and got all the problems right. He did this all the time, and even graduated as valedictorian. 

Perhaps this person was so used to everything coming easily to him and was so used to being the big fish that when he began his freshman year at Princeton University, he discovered that this was no longer the case. Everyone around him was a "big fish" from wherever they came. The coursework was more difficult than he anticipated, and for the first time in his life something wasn't easy for him. This person's comfort zone should have been challenged more when he was growing up to prepare him for meeting others like him. Maybe he should have been enrolled in more challenging math classes at a local community college. Or, perhaps this person didn't draw well, and giving him art lessons in high school would have been a good way to challenge his comfort zone and show him that sometimes new skills aren't easy. 

So at the end of the day, all of us-- autistic, neurotypical, highly intelligent, learning disabled, etc.-- need to have our comfort zones challenged so that the brain evolves-- within reason, and in a way that's accommodating and understanding to the individual. For the neurotypicals reading this, I remind you not to be infantilizing when you're helping someone on the spectrum challenge their comfort zones. Make it a team effort, not something that seems to them like you assuming you know what's best for them because you're neurotypical.

Of course, it's also important that we on the spectrum advocate for ourselves and make our needs heard.***

See you next time.

*I don't know much about dyslexia and if I'm getting anything wrong, I invite others to correct me on the scenarios I'm presenting.

**I have heard stories about kids with dyslexia improving their reading skills because they were so determined to read Harry Potter!

***I realize that for many people this might not be easy. Perhaps it's another challenge to their comfort zone, one that a trusted friend or relative can help them with.

Is It Ableism? Part 4: Internalized Ableism

If you've just joined me, don't forget the read the first three posts in my Is It Ableism? series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

In Part 3 of my Is It Ableism? series, I ended by saying I wouldn't want to be "cured" of autism because it makes me who I am. Prosopagnosia is a different story; it isn't something that I feel makes me who I am, but just something that gets in the way. I also said that I could imagine people accusing me of internalized ableism for making this statement. Again, we need to make sure we have a discussion about this issue rather than being so quick to jump to conclusions. 

So what is internalized ableism? Let's ask Wikipedia. Internalized ableism is a form of internalized oppression, which occurs when "one group perceives an inequality of value relative to another group, and desires to be like the more highly-valued group." Obviously, this can occur at the individual level too. I reject the idea that my desire to not have prosopagnosia is a form of internalized ableism. Even though people generally are understanding when I tell them it will take me a while to learn their faces, I would prefer that this wasn't the case, that it didn't take so much effort. But that doesn't mean I think that people without prosopagnosia are "better" than me. If I did, then, yes, that would be a form of internalized ableism. That doesn't mean I haven't suffered from internalized ableism in other circumstances. In fact, I think I have, in the form of a book I wrote several years ago.

In the summer of 2010, I began writing a book for parents of kids with Asperger's Syndrome*. I began seeking an agent for the book in 2013, but it fell to the wayside as I had just been fired from a job in Maine, where I moved to after leaving Brooklyn. I had to move back in with my parents in Pennsylvania, continuing the never-ending saga of trying to find and keep a job. When I finally got on my feet again in Boston, I decided not to pursue publication: Many of the ideas that I expressed in the book, such as that we need to stop trying to "fix" kids with Asperger's Syndrome, were novel at the time that I wrote the book but are now at long last a growing part of mainstream discourse. Much of what I said has been expressed by lots of autistic people in books, blogs, and on YouTube. My book is outdated, and I am now prioritizing writing fiction. Any of my personal thoughts about autism go into this blog, of course, and possibly in some "officially" published articles in the future.

I still stand by most of what I expressed in my book, but there are other things I now realize are cringeworthy. In the opening chapter, I proudly declared that I probably would not meet the diagnostic criteria for autism if I were tested as an adult. This statement was shortsighted, ignorant, and, yes, arguably reflective of internalized ableism. I made this statement based on something that I once read about how some autistic people, upon reaching adulthood, present in ways that are subclinical. 

I realize now that part of the reason that some people don't seem to meet the diagnostic criteria in adulthood is because there are still many psychologists who have a narrow-minded view of what autism looks like, especially in women. I've heard too many women complain that they were not diagnosed because they fail to meet certain stereotypes. They are told things like, "You're too creative to be autistic" or "You're too outgoing to be autistic." In my mind, that would be just as ignorant as telling someone, "You can't have Tourette Syndrome because you never swear**."

Another reason is that lots of autistic people-- again, mostly women-- have learned to "mask"-- suppress their natural autistic tendencies in the name of being accepted and, more importantly, to avoid interpersonal trauma. But guess what? Many of these people suffer trauma anyway, often in the form of PTSD as a result of decades of exhaustive masking. 

Maybe my autism is less obvious now than it was twenty-ish years ago, but that isn't something I should boast about. I realize that part of it has to do with what autistic people stereotypically look like and another part has to do with the fact that I had to work hard to get to where I am now in terms of social skills. I don't know how much of this has to do with masking-- which I was never good at anyway-- and how much of it has to do with natural neurobiological changes. The latter I deserve no credit for because people are made the way they are made. I had a hard time making eye contact with unfamiliar adults when I was a kid, but that changed around adolescence. For me, it was a stage that I simply outgrew***. My guess was that there was simply a natural, neurobiological change that occurred. 

On the other hand, there are other things that I had to work rigorously to curb, such as my tendency to to make inappropriate jokes. I still make them, but these days I am better at choosing my audience for them. I was one of those autistic kids who had no "filter", and I had to work hard to "install" it. Same with my tendency for meltdowns. The meltdowns are largely under control due to the intervention of SSRIs and rigorous self-training; when they do happen, it's generally only when I'm alone or around my family, where I am more likely let my guard down (that, and the fact that since they've known me for so long they often accidentally reopen old wounds, as illustrated in the first post in the series). 

So what does this have to do with internalized ableism? It has everything to do with it! Over the years-- and even still today-- if I occasionally don't rein myself in with a joke or a meltdown, I get unbelievably angry at myself, holding myself to neurotypical standards. I feel not that I made a mistake, but that I have done something horrible, that I have failed in some egregious, unforgivable way, and that any harsh backlash I get from other people for it is well-deserved rather than the result of lack of understanding on their part. Just to illustrate how ludicrous this is, let me give you an analogy with a physical disability: A wheelchair user tries to walk up the stairs into a building but keeps falling down. Instead of accepting that she needs a wheelchair, she tells herself, "What's wrong with you? Everyone else can get into the building, so why can't you?" Perhaps she has said this to herself after decades of hearing things like, "You need to learn to walk," "Do you see other people your age stumbling on the stairs?", "You're not trying", and "You refuse to learn to walk!"

As my therapist has repeatedly told me, I have been well-trained. Growing up and well into my twenties, my well-meaning but ignorant (again, in the "I don't understand astrophysics" way, not the Donald Trump way) parents repeatedly said similar things as in my wheelchair user example, such as, "You're not trying," "You need to learn to...", "You refuse to learn...", "You need to change," and so forth. After learning about the autism spectrum in 2002 and finally having a logical explanation for, well, everything in my life, I still managed to internalize the feedback and input and got from my parents and others. For many years I saw my autism as something to overcome rather than something to accept and expect understanding and accommodation for. As illustrated in the first blog post, my dad still has the mentality that autism is something to "overcome."

But even with "overcoming" vs. "acceptance", there is a lot of gray area, just like everything else I've written about so far in this series. Stay tuned.

*This was the term I used for myself back then. These days I waffle between "Asperger's Syndrome" and autism and feel ambivalent towards both terms. But that's another contentious discussion for another day.

**This particular manifestation is called coprolalia, and it occurs only in a small minority of people with Tourette Syndrome. Unfortunately, it is the most prevailing stereotype that people associate with the condition.

***To be clear, I use the term "outgrew" because my transition into making eye contact happened naturally, not because other people forced me to or because I forced myself to. I realize that for many people eye contact will be difficult or impossible for them for their entire lives, and nobody should force them to do it.

Is It Ableism? Part 3: Defining Disability

If you've missed the previous installments of this series, check out Part 1, in which I introduce the concept of ableism; and Part 2, in which I attempt to define ableism. In the latter, I discussed examples of ableism in my own life while admitting that part of labeling someone's behavior ableist is contingent upon that person knowing about the disability in question. Ableism isn't always easy to define, and defining disability is also complicated.

According to our good friend Wikipedia, a disability is "any condition that makes it more difficult for a person to do certain activities or effectively interact with the world around them (socially or materially)." Historically, society has taken for granted what is now called the medical model of disability: the person has a problem that needs to be fixed. For example, with a person who cannot use stairs, the goal is to "fix" that person to make them physically able to use stairs. If such interventions don't work, then that person is seen as the problem, rather than unaccommodating social systems and structures. 

On the other hand, there is the social model of disability, in which the person is disabled just by virtue of the fact that society does not accommodate them. The conditions that the person has are instead referred to as "impairments" (which I think is strange because it sounds judgmental, which seems to contradict what the social model is trying to prove), and "disability" is what happens when society refuses to accommodate said person.

So which definition of disability is better?

Unfortunately, the Internet is where nuance goes to die, and unless I immediately embrace only the social model of disability, I anticipate a huge backlash with accusations of ableism. Well, lay it on me. Like it or not, this is a nuanced issue and I'm not going to pretend it isn't. Both the medical and social models of disability have their merits and limitations. But what this comes back to for me is how difficult it is to define disability. So let's use an example that will elucidate the complexity of the issue:

Vision impairment. Nearly everybody needs glasses eventually. Some people need them full time from early childhood and others, like me, don't need their first pair until their 40s or later and even then only wear them part-time. If we lived in a world in which visual impairment wasn't so pervasive and inevitable, I think it would likely be seen as a disability. However, because it is pervasive and inevitable, accommodations-- known as glasses-- are readily available. It probably doesn't hurt that said accommodation easily fits into one's handbag or backpack. Vision impairment is only regarded as a disability when it is so severe that glasses don't readily help the person see clearly, the most extreme case being when the person is blind.

Well then, is blindness a disability by the medical definition or the social definition? I really don't know. Thankfully, there are more resources to aid blind people in navigating the world-- such as the availability of reading material in Braille or on audio, service dogs, and transportation services. It probably isn't enough, but if there were perfect accommodations available for blind people, would they suddenly no longer be disabled? I think we are burying our heads in the sand if we pretend that this is only a societal issue. Even without the dangers of modern society-- such as cars while crossing the streets-- a blind person is at a disadvantage in ways that are beyond the systemic. A blind person living in a traditional tribal society where predators that feed on humans run rampant, for example, might not survive long. 

However, I want to make it clear that even if we embrace the medical definition of disability on any level, that doesn't mean society should see a disabled person as "lesser" or "broken", and we shouldn't impose a cure on them for their condition, if one ever develops. It is tempting to think that a person with a disability might want to be cured, but in the 21st century it is ignorant to make this assumption. Years ago, I spoke to a person online who was completely blind, and I asked him if he ever wished he was able to see. He said he didn't, and if there was a cure he wouldn't take it. Being blind is what is normal to him because it is his world, his reality, and what he has always known. 

As for autism, how do we define it in terms of the medical definition vs. the social definition of "disability"? I really don't know. Looking back at my childhood, I would have been far less "disabled" if I had been met with more understanding and acceptance. Then again, I am what is often labeled as a "high-functioning" autistic, so maybe it is easier for me to make this statement. But that brings rise to another contentious issue-- functioning labels-- which many of us in the community see as problematic. I have mixed feelings on the issue. While I don't think functioning labels are irrelevant, they are not easy to define. Non-verbal autistic people are generally seen as "low-functioning" because they're unable to speak, but many of these people are also intelligent, as one might see when giving these people a computer to help them communicate. Intelligence is automatically seen as a "high-functioning" trait. Functioning labels, overall, are another complex issue and beyond the scope of this series of blog posts. Maybe I'll come back to it eventually.

I will say this though-- I do have several neurodevelopmental disabilities: I am autistic, I have non-verbal learning disability, auditory processing disorder, and prosopagnosia (and let's be real, NVLD, APD, and prosopagnosia have been strongly linked to autism). Would I want to be "cured" of autism? I don't think so. It comes with assets and limitations, but overall it makes me who I am. My propensity to hyperfocus can be equally a blessing or a curse, depending on what I'm hyperfocusing on. Getting hyperfocused on a project I'm working on? That's a good thing! It makes me productive! But what about the obsessive crushes (which are common among autistic people) I've experienced in the past? Well, when another person is on the receiving end of such an intense focus, no good can come of it. But aside from that, my ability to hyperfocus-- and be alone for copious amounts of time, for that matter-- are good things.

But what about my other developmental disabilities? If there were a cure for prosopagnosia, for example, I would take it in a heartbeat. There is nothing fun about prosopagnosia. While I don't think it makes me "less than", and while people are very understanding when I warn them I'll end up asking their names dozens of times before recognizing them on site, it's just a pain in the ass. I don't like having it. It's not something intrinsically tied in to my identity, and it just gets in the way. Just for saying that, I'm sure I'm going to (unfairly, I think) get a lot of accusations of internalized ableism. And just what is that? Well, stay tuned for next week's installment.

Is It Ableism? Part 2: Obvious Definitions of Ableism

In last week's post, I introduced the concept of ableism via a personal anecdote. Then, I acknowledged that it's not easily defined, and defining it requires a lot of nuance. According to Wikipedia, ableism is defined as "discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled." This is the definition at its simplest, but there's still a lot to unpack. So let's start with a very simple example that damn near everybody would agree is ableism:

In Nazi Germany and its eugenics program, people with physical and cognitive disabilities were deemed inferior and executed. However, it is pretty naïve to think that ableism is limited to such extreme and obvious examples. Just as society is becoming increasingly aware of racism being a structural issue-- as opposed to something simple and obvious like "He's a racist because he's a KKK member"-- it's important to realize that structural ableism is a problem. Often, structural ableism is the result of lack of awareness and understanding rather than intentional maliciousness. A simple example is not providing a ramp for a wheelchair user to enter a building. Or, in the case of an invisible disability, such as dyslexia, not giving a student extra help or some other accommodation. While not as insidious as Nazi eugenics, failing to make accommodations for disabled people is a genuine problem.

Structural ableism is difficult to address, but part of addressing the issue involves being aware of cultural ableism. Wikipedia defines cultural ableism as "behavioural, cultural, attitudinal and social patterns that may discriminate against dignity of disability symptoms, deny, invisibilise, dismiss special needs or may make disability rights and accessibility unattainable." This is definitely a major issue for all forms of disabilities, and I would wager probably more so for invisible disabilities.

When I was a kid in the 1980s and 1990s, the only invisible disabilities that were well understood-- to my knowledge, anyway-- were dyslexia and intellectual disability (people with the latter, of course, used to be slapped with the cringe-worthy label "retarded"). Special education classes and accommodations were increasingly available for people with these disabilities. But as for the invisible disabilities that have been a part of my life like autism, prosopagnosia, and auditory processing disorder? Forget it. Sink or swim. Missed that social cue and made a faux pas? "You refuse to take advice and you refuse to learn from your mistakes. You're not trying." Can't differentiate between two teachers with similar mustaches? "You weren't paying attention." Didn't hear the directions because there was too much background noise? Tough shit. "These other kids all heard the directions, so why didn't you? I don't want to hear any excuses." When parents and teachers said things like this to me, they were denying and dismissing my disabilities. There was just one problem that prevents me from automatically slapping on the "ableist" judgment: practically nobody was aware of autism, prosopagnosia, and auditory processing disorder back then. Of the three, auditory processing disorder was the only condition that I was diagnosed with as a kid.

While the above scenarios are definitely ableist, I strongly believe that applying this label is contingent upon whether the person passing these judgments is aware of the existence of these invisible disabilities. A teacher today would most certainly be educated on them, and if they still displayed the same attitude, it would be appropriate to call their attitudes ableist. Teachers in the '80s and '90s? Ignorant perhaps (in a "I don't know anything about astrophysics" kind of way, not in a Donald Trump kind of way). And in some cases, assholes, because on what planet is it okay to tell a child that they aren't trying?

I let my parents and teachers off the hook somewhat because the issue was largely that my disabilities were unknown and unidentified. As I noted, auditory processing disorder was the exception to this. I was diagnosed at age eight, and every year before school started, my mother told all my teachers that I needed to sit in front of the room so that I could more easily process the directions. Usually my teachers cooperated, but practically every year there was a teacher who failed to let me do that; whether because they "just forgot" or because they dismissed it as "special treatment", who the hell knows? If it was the latter, that is definitely an ableist attitude. And invariably I would get in trouble with said teacher for "not listening," which possibly reflected an ableist attitude.

Now what about less obvious cases of ableism? Well, part of that involves acknowledging that even a disability isn't always easy to define. We'll unpack that next week. Stay tuned.

Prosopagnosia (Face blindness)

Jeez, I can't believe how long it's been since I've written a post! I really need to write these more often.

Yes, it's been far too long! A lot has happened since my last post. For one thing, I'm no longer in Boston but in nearby Quincy. The landlord for my old apartment sold my unit-- which had been a steal-- and everything else in the area was approaching New York City prices. Quincy is expensive too, but still a bit less than Boston. It's also near the subway lines, so I moved to my new place-- a nice, one-bedroom apartment-- at the end of last October. I miss living in Boston proper, but at least I'm in a large apartment instead of a studio.

So, today's topic is prosopagnosia... let's discuss!

I am one of many people on the autism spectrum who also has prosopagnosia. Prosopagnosia is a neurological condition that makes it difficult for the afflicted to recognize faces. In my case, it takes me longer than other people to learn new faces. Some people have the condition so severely that they fail to recognize family members-- even spouses-- if they so much as wear a drastically different hairstyle.

I was only identified with prosopagnosia recently, but I long suspected that I have it. I am just terrible at learning new faces. When I was a teenager on my group trip to Israel, I made a friend on the first day. The next day, the friend changed her clothes and I didn't recognize her. This eventually passed, but it took a few days for me to be able to recognize her no matter what she wore.

Throughout my life, I've asked the same new people their names over and over again. It takes me a while to be able to recognize someone at work out of context. As a kid, other kids took advantage of this aspect about me by harassing me, knowing I could not report them because I wouldn't know who they were. Sometimes, my mother would ask me, "Who are these kids?" I would say, "I've never seen them in my life." Except I probably had, several times! When my parents would drop me off at a camp event during the school year, they would ask, "Do you see anybody you know?" I would quickly scan the area for kids in my group, because they were the only kids I recognized. Even if I didn't spot them, sometimes I'd lie and say, "Yes" because I knew that I was supposed to be dropped off at a particular spot anyway, and I'd find them. I didn't want to deal with my parents asking me why I didn't know if I saw other kids from camp, even if they thought such a question would help me.

Prosopagnosia can often be embarrassing. Even before I knew the word for it, I felt ashamed of my problem. Whatever it was, I knew it was an issue that other kids didn't deal with. Sometimes in school if one "friend" was gossiping about other kids, she would say, "Oh, so you know So-and-So?" I would say, "What about her?" And she'd say, "Well, do you know who I'm talking about?" I would lie and say, "Yes," just hoping that the friend would get the story over with. I felt like a complete idiot because I knew that whoever my friend was talking about was probably in several classes with me. But what could I do? The same thing that closeted gay kids did (and probably still do sometimes) when asked, "Who do you have a crush on?" They just play along, pretending to be what society deems "normal" so that they won't be humiliated. And when I worked as a children's librarian, I felt like a complete jerk for not knowing the kids' names. I knew that people probably interpreted that as me not caring. I think it's worse for a woman to have prosopagnosia, because in society women are expected to have the "nurture" setting as their default. That's not me.

And to be honest, while I do care about humanity at large and about individual people once I get to know them, at first glance human faces are all but meaningless to me. Until I get to know the person-- or at least something about them-- I see just a meat bag, a naked mole rat-- take your pick. And I actually wonder if this has something to do with my demisexual/demiromantic orientation. Think about it: Most people get into relationships after an initial attraction based on physical appearance. That doesn't work for me. It's literally impossible for me to think of someone as romantically/sexually attractive until I get to know them in some way. And if people are "meat bags" to me at first glance, why would I feel attracted to someone? As is with demisexual and demiromantic people, attraction is very rare for me.

But as for prosopagnosia as it affects my daily life, fortunately as society marches forward through the 21st century, there is greater understanding. People at work know that I have it, and they don't judge me if it takes me forever to learn new faces or if I get two new people mixed up. They understand and we laugh it off. I'm now comfortable telling people outside of work that I have this problem, and am glad to be living in a time where we can address these issues openly and frankly. There's less anxiety involved when I can just explain to people that, yes, I'm terrible with faces, and yes I will ask your name over and over.

Yes, and so what?