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 11: Advocating for Your Needs

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

As always, names changed.

Well, we're down to the wire. In our previous installment, I discussed how everybody-- regardless of neurological profile, disability, etc.-- needs to have their comfort zones challenged. The caveat, of course, is that people around us need to understand and respect that there are going to be limits to these challenges. Sometimes, we need to advocate for our needs when others don't seem to understand.

On the day after Thanksgiving in 2014, I was out for breakfast with my extended family. My cousin announced that she was pregnant with her first child. However, her aunt hadn't shown up for breakfast yet and we were told to wait until she got there before making the "official" announcement (I think I hadn't heard that bit of instruction... I don't recall). When my cousin's aunt showed up, my cousin once again announced she was pregnant and acted like this was the first time she revealed it to everybody. I said something about how we had been talking about it before, and my cousin put her head in her hands and said, "Oh, Julie..." in exasperation. 

Just a couple years before, had the same situation happened, I might have apologized and we would have laughed it off. However, I was still reeling from having recently been fired from a library in Massachusetts and, just months before that, a library in Maine. Before working at these two libraries, I had thought that I was long past being fired from jobs over social faux pas (pases?), but after the problems at the libraries, for the first time in years, I was incredibly self-conscious about how I was perceived and if I did things "wrong." I was chronically unemployed, and I thought to myself, "If I did this at a business meeting or something I would be fired on the spot." I felt incredibly stupid and that no matter what I did it wasn't good enough, and how dare I make mistakes?

Without a word, I got up from the table and left the restaurant. I went outside to take a walk so I could calm down and gather my thoughts. But at that moment, I was filled with rage at myself. I thought something along the lines of, "You fucking asshole. You ruined your cousin's important moment and humiliated her aunt in front of everybody. You are just beyond callous, aren't you? You never learn from your mistakes and you just keep fucking up."

Of course, my cousin kept trying to follow me, but I ignored her. I did find out later that after I walked out my cousin's aunt looked at my mom in confusion and said something like, "What was that about?" Mom, who at long last was beginning to understand the idea of me having a proverbial raw exposed nerve and reacting not to a mild stimulus but a series of things, said, "You don't understand," and then explained it to her. Unfortunately, when Dad found me, he was a little pissed off. He told me to grow up and go back inside. 

A similar, frustrating incident happened last year during a Zoom call from my cousin's house in Providence to my parents' and my cousins' parents. I was at my cousin's house instead of at my parents' for Chanukah/Christmas because of the pandemic. Without regurgitating the entire story, I will say that I once again removed myself from a situation that became upsetting. I went upstairs to the guest room to calm down. I texted my mother and told her to call me after the Zoom call was over. When I got on the phone with her, I told her, "I'm not having one of these big Kumbaya Zoom calls anymore. If you want to have them with the rest of the family, go ahead. But I won't be there. I don't like them, they're not enjoyable for me, and they feel like a chore. It's you and Aunt Janice doing all the talking and whenever I try to get a word in edgewise, people talk over me." We had had several large group Zoom calls since the beginning of the pandemic, and while they didn't upset me like the Christmas one did, they largely did feel like a chore and weren't enjoyable. Mom said she understood and respected my decision.

I have said in previous blog posts that my meltdowns (or pre-meltdowns, in these stories?) are largely under control, but when they do happen it's almost exclusively around family. This is true. Had the Thanksgiving 2014 episode happened among another group of people, I might have felt a little embarrassed but not felt it as intensely as I did that day. I wouldn't have felt the need to get up and leave. On Christmas 2020, had I been in a Zoom call with the same number of people, but people who weren't my family, I would have shrugged everything off. In fact, in spring of 2020 I participated in a Zoom call with about ten other people from the camp in Michigan I worked at in the early 2000s. There was a lot of people talking over each other, and it didn't feel personal or anxiety-inducing. Why? Context is important. Unfortunately, even the most well-meaning of family can push my buttons, and this has largely to do with the fact that they've known me for so long and that, in some ways, they sometimes still have a perception of me of when I was a kid that hasn't completely changed. In the Zoom call for example, even if those who were talking over me weren't doing it on purpose (and they probably weren't), there's still a lot of baggage that makes it feel personal. When I was a kid, my parents and brother sometimes deliberately ignored me if I made some stupid wisecrack or if they thought I was talking about something that wasn't "age appropriate", for example. The talking over me during the Zoom call felt like a throwback to that. I've seen a lot of adults on the autism spectrum make similar comments about baggage with their family who is, in most cases, very well-meaning, but took decades to finally understand them.

A number of therapists I have talked to over the past fifteen years or so told me that I need to tell my parents and others that they need to just let me remove myself from situations like the aforementioned so I can calm down. They need to let go of the idea that I have to be there to show how "mature" I am. They need to understand that I am engaging in self-care and also preventing a possible meltdown. Unfortunately, it's a hard lesson to learn because people automatically think that when somebody gets up to walk away from a humiliating or otherwise frustrating situation, it's an implicit invitation to follow. With kids it's seen as a ploy for attention, to get others to follow and reassure them... and with adults... well, I don't know. They probably slap the "immature" label on it.

Autistic people (and others-- let's be real; this probably doesn't happen to just us) need to be allowed to leave a situation, whether it's for reasons I just related or whether it has to do with sensory overload that some of my brethren describe. Or for a variety of other reasons. Bottom line: We might have "unusual" needs, but they are real, and you have to listen with an open mind when we tell you what they are.

Whew! In eleven blog posts we've covered so much ground. We'll wrap it all up in the next and final post.

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 9: Unintentional Gaslighting

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"

As always, names are changed.

In Part 7, I talked about how autistic people are often infantilized. In Part 8, I discussed how the actions of autistic people-- particularly meltdowns-- are dismissed as "immature." Meltdowns are often the result of a cascade of overwhelming and complex emotions and are not a question of maturity; how can it be when it's something that most people don't deal with at any age? 

Many of us on the autism spectrum have commented on having had our emotions, experiences, and perceptions invalidated, either when growing up, as adults, or both. At some point in the past few years, I began referring to these attitudes from other people as "unintentional gaslighting." As it turns out, many other people have independently come up with this term, and now it is commonly used in autism communities. So what is it exactly? Well, let's start by going over the definition of "gaslighting".

"Gaslighting" is when someone purposely makes another person doubt their own perception of reality, and it is often used in abusive relationships. Here's an extreme example where an emotionally abusive husband, Steven, might gaslight his wife, Holly: Holly comes home one day to see Steve making out with another woman. Holly calls out Steve for cheating on her. However, after the other woman goes home, Steve assures Holly that the woman was just a client, but that she stopped breathing because of some medical issue and he had to give her CPR. Steve might even say, "I don't know where you come up with this stuff. You let your imagination run away with you and then you overreact. You'd better stop it if you want this marriage to last." Even though Holly knows what she saw, Steve has a way of manipulating her into doubting even her clearest observations. She is eventually convinced that her imagination did run away with her, and she was just overreacting.

So what is unintentional gaslighting? It's exactly what it sounds like: making people doubt their own perception of reality, but for well-intentioned reasons. It often happens to autistic people simply because they are autistic. Because we interact with the world differently, and occasionally misinterpret situations, people often perceive us as being largely out of touch with reality, needing our neurotypical counterparts to explain even the most basic things to us. Even if we know exactly what we just experienced, family, friends, and others will tell us we were wrong, and we eventually begin to doubt our own perceptions. It feels like gaslighting, but the behavior is well-meaning and unintentional. That doesn't make it any less frustrating, however. 

Here's an example from my own life:  

In the spring of 1995, at age 14, I had been seeing my therapist, Dr. Klein, for about three years. I eventually decided to stop seeing him because it was becoming abundantly clear that he was unable to help, and he just didn't understand me. During our last session, he asked if I wanted to see my diagnosis. I thought, "After three years, he finally knows what this is?" Dr. Klein handed me a 3x5 index card, on which he had written, "Difficulty interacting with peers and adapting to new situations."* To this day, I have no idea what he meant by "difficulty adapting to new situations", seeing as how I tried new things all the time-- I was actually getting ready to go to overnight camp that summer, and that was my idea! The example of unintentional gaslighting comes in at the following exchange, which I have recreated to the best of my memory:

Me: What do you mean "difficulty adjusting to new situations?" I don't have a hard time adjusting to new situations!

Dr. Klein: What about the social problems you have with your peers?

Me: Being made fun of and hit is me having "difficulty adjusting to new situations?"

Dr. Klein: Well, it seems you overreact to things and get into conflicts with other kids far too often.

Oh, my God, where do I even start?

Aside from the obvious victim-blaming (which is another topic for another day), the unintentional gaslighting here was when Dr. Klein told me that I overreacted to situations where other kids bullied me. I had told Dr. Klein dozens of stories about kids spreading rumors about me, humiliating me in front of others, and physically assaulting me; in one case, a girl pinned me to the wall and tried to strangle me because she thought I had been flirting with her boyfriend. My peers were emotionally abusing me, but unfortunately back then bullying wasn't seen as a form of emotional abuse. It was just "part of growing up." And because it happened as often as it did, Dr. Klein obviously came to the conclusion that I was exaggerating and overreacting to the situations I related to him.

When I told my current therapist this story, he was shocked, and told me that even in the 1990s he would have never said something like that to a kid he was working with. Do people-- autistic and neurotypical-- overreact sometimes? Sure. But when the "overreaction" is something that's happening consistently, there's obviously something deeper going on: at best, it means that the person in question suffers from severe anxiety that might have nothing to do with external factors; at worst, things are really as bad as the person says and the anxiety follows. In my case, it was the latter.

Unfortunately, a lot of us on the spectrum have similar stories about such unintentional gaslighting. One that I often hear is from people with sensory issues. They might complain about bright fluorescent lights, only to have friends and family tell them, "Oh, it's not that bad," as if that will make them reconsider how the bright fluorescent lights are affecting them. Well, they are obviously "that bad" to the person with sensory issues!

In a personal "it's not that bad" incident that I experienced, when I was in fifth grade and joining the school band to play the saxophone, my music teacher told us that we were supposed to go into the kindergarten room the next day and pick up our instrument. Even though the room would be filled with little kids, I was anxious about walking into a room with a group of random people to get my saxophone. I expressed my anxiety to my parents, saying something like, "I'm faced with a real problem." Dad sighed in exasperation and said, "Oh, boy, here we go again. Every day it's the same thing." Around that time in my life, Dad often told me that he felt I was "looking for problems" and "making a big deal out of nothing." Well, it obviously wasn't "nothing" to me!**

Telling people they are "making a big deal out of nothing" or "it's not that bad" does not help the situation. Also, why would anybody "look for problems?" As I've said, sure, people can overreact, but if these seemingly "little" things are a big deal to someone-- autistic or not-- there is obviously something bigger going on, especially if there is a pattern of such reactions. I think that we as a society are getting better-- albeit slowly-- at listening and not being dismissive like this. But people need to continue listening and learning that some brains just work differently. They need to do better at validating our experiences even if they don't understand them. If something is "that bad" to someone, accept it and help them work through it to the best of their ability, but also keep in mind that they might not be able to work through it, depending on the person and depending on the issue.

And here I'm going to awkwardly segue into the next installment, which is about challenging one's comfort zones, and any limitations of that. Stay tuned.

*These are symptoms, not a diagnosis!

**Fortunately, the kindergarten room was empty when I went to get my saxophone that day!

Is It Ableism? Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

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

In my last post, I discussed the fine line between accommodation and infantilization. Infantilization is just a symptom of the bigger picture of how many of us are viewed, and that can be summed up in the word "immature."

Many of us who came of age before the 21st century grew up hearing the word "immature", to describe them (and let's be real, some autistic kids growing up today likely do too). And many people, myself included, are sick to death of it. Fortunately, I rarely hear it these days, but I strongly suspect that's more to do with rigorous training in "overcoming" coupled with an accident of nature as to just what my autism profile looks like than improved understanding on the part of neurotypicals in my life.

Right now I can hear someone saying, "Oh, well if their social skills are underdeveloped, isn't it right to call them immature?" 

Oh, my God, where do I even start? 

Maybe it would be fine if not for the baggage that the word carries and the fact that people usually use it to reprimand others. Let me elucidate with an analogy: Would you ever call someone with an intellectual disability "stupid"? No, you wouldn't, and most people would consider you an asshole if you did. Why? Because it is not a neutral descriptor for people with intellectual disabilities, but rather a crass, dismissive word with a lot of baggage. When people use the word "stupid" these days, they use it for someone with average or above average intelligence who is acting willfully ignorant or foolish. For example, you might call an adult "stupid" for running a red light. You might call a teenager "stupid" for trying cocaine. You might call your neighbor "stupid" for saying that homosexuality is a mental illness. But when you do so, you are reprimanding them; the understanding is inherent that these people should have known better. In fact, it's certain that they did know better but didn't care. 

To call someone with an intellectual disability "stupid" dismisses the very real cognitive limitations that are beyond their control for a variety of complex neurobiological reasons. It also carries the implication that they somehow made themselves that way and don't deserve to be treated with respect. In fact, I think it would be ableist to call someone with an intellectual disability "stupid." At the very least, it's tactless.

I would like to present the argument that the same could be said about the word "immature" for autistic people. Before I continue, I want to emphasize that I don't want to be the "word police" and insist that anybody who uses the word "immature" is guilty of ableism. It's this kind of orthodoxy that I want to avoid. Let's just consider and discuss the issue.

"Immature" is used in a similar manner as "stupid," to reprimand someone for an attitude or action when they certainly knew better. We might call a teenager "immature" for playing video games in his room during a family gathering. We might call an adult "immature" for changing the channel to a football game without asking the others who were watching a movie if it was okay to do so. We might call a ten-year-old child "immature" for screaming and throwing things because her parents wouldn't buy the American Girl doll they promised her for her birthday. In the case of neurotypical people engaging in such behaviors, it is probably safe to say that these were the behaviors of someone acting entitled or selfish, and it would be okay to use the word "immature" to reprimand them.

However, an autistic person could do these exact same things for very different reasons. The teenager playing video games in his room during a family gathering might be trying to get away from the overwhelming crowd and loud noises. The adult who changed the channel to a football game might have missed the cue that everyone else was engaged in the movie. And yes, the ten-year-old girl's reaction to not getting a doll she wanted can also be the result of something more complex than Veruca Salt-style selfishness and entitlement. In fact, her behavior that people might be quick to label "immature" is not a temper tantrum, but what is known in the world of autism as a meltdown. Before you, dear reader, accuse me of getting into semantics, let me explain the critical difference between a temper tantrum and a meltdown. They are indeed very different, even if they look the same on a superficial level.

A temper tantrum is something that young children do to manipulate a situation and get what they want. A neurotypical child might throw a temper tantrum when her parents won't buy her the doll she wanted, and she hopes her actions will make them yield to her demands; she is very much in control of her behavior, at least to a degree. After several firm "no"s and, hell, a half hour to calm down, she'll forget about it and go on with her life. 

A meltdown, on the other hand, is the result of being so overwhelmed by strong emotions, of a brain that experiences life more intensely than its neurotypical counterparts, that the person loses control. While it might be difficult to appreciate why a ten-year-old girl could experience such strong emotions about a doll, let me remind you that we on the spectrum have a propensity to fixate (which, unfortunately, many people also see as a sign of immaturity instead of different neurological makeup). This hypothetical girl has spent the month leading up to her birthday thinking about the doll literally nonstop, something that neurotypical children-- even younger neurotypical children-- generally don't do. When she eventually learns that her parents can't afford to shell out $145 for it, she does not experience a simple disappointment that most kids would feel but something much more intense, a feeling of genuine devastation. She is not angry at her parents for not catering to her whims, but angry at the situation. She is angry at the fact that something she invested so much of her emotional energy in is not coming to fruition. She may even know that her reaction is irrational and also be angry at herself for caring so much about something that she knows other kids her age wouldn't give a second thought about. After having her meltdown, she may even feel ashamed for her behavior but feel helpless for having been unable to control it. Imagine, then, after experiencing all these complex thought patterns and self-criticisms, when people around her dismiss her behavior as "immature" and also use the word to describe the sum total of who she is.

Autistic people --kids and adults-- can have meltdowns for a variety of reasons. One catalyst I commonly hear about is sensory overload, such as a barrage of loud noises that feel intolerably loud to them. I am not someone with sensory sensitivities, and this was never an issue for me. What triggered my meltdowns growing up and into my twenties (and today, albeit very rarely, and usually around my family where I let my guard down, and these meltdowns are usually in response to old wounds being reopened) was often the result of anxiety that accumulated over the course of hours, days, or sometimes several weeks. The anxiety could be related to trying to make friends in large groups as well as not understanding social situations and not feeling understood in turn. A series of these situations that added to my anxiety often culminated in a meltdown, triggered by something fairly minor. But what people didn't understand was that I was not reacting to that minor thing. It was as if there was a raw, exposed nerve that got brushed one too many times. I wasn't reacting to one thing, but a series of things. It was the end result of me trying to keep my stratospheric anxiety contained. 

I would always feel deep shame and embarrassment as well as a sense of failure for not being able to prevent the meltdown. What made matters worse were people's reactions and assessments of what they witnessed. Dad often angrily commented, "You need to learn to control your temper!" and sometimes even implied that I was acting on a whim. Other adults labeled my meltdowns as "emotional outbursts" or "temper tantrums" for not getting my way. 

The worst part was how people usually dismissed my behavior as "immature" and, by extension, invalidated my emotions, no matter how many different ways I tried explaining myself. I felt like parents, teachers, camp counselors, and others were summing up a reaction to a series of complicated emotions as the whim of someone who refused to handle not getting her way, or who refused to handle common life stressors. When dismissing me as "immature", they were blind to the reality of the complex, intense thoughts that led to the meltdown as well as the complex, intense thoughts that went through my head with promises to myself to control them in the future. Often, I spent copious amounts of time in my head trying to think up strategies to curb future meltdowns. Unfortunately, they rarely worked and only delayed the inevitable. In some ways, the more I tried to control the meltdowns, the worse they became when they finally happened. Why? It was another bit of pressure society put on me that only added to my anxiety, anxiety I felt I was rarely allowed to express. I also felt that people thought I had no idea how I was perceived when these meltdowns happened. Because, hey, I was "immature" and therefore beyond clueless as to how this behavior appeared to others, right? 

Wrong. Of course I knew!

In a story that I related here, when I was eighteen years old I was thrown out of an art class for a fairly minor meltdown, in which in frustration I said "shut up" in response to a teacher's annoying laugh (I meant to say it under my breath; my utterance wasn't intended for her to hear). When my parents picked me up, they were angry with the teacher. But they also told me that a teacher shouldn't have to expect to deal with such behavior from an eighteen-year-old.

I think a good argument could be made that somebody in the 21st century dismissing a meltdown as "immature" or saying that a teacher shouldn't have to expect certain types of behavior of people in a certain age bracket (at least when talking about autistic people) is a form of ableism. Returning to my earlier analogy, I feel that it is ableist to call a kid who struggles intensely with math as "stupid" and it would be pretty lousy to tell the kid, "No teacher should have to expect to go over times tables with a twelfth grader when he should have learned them in third grade." Once again, I don't want to propose this labeling as a form of "orthodoxy" (which I see too much of on Facebook and in social justice circles), but as a discussion worth having and a concept worth thinking about. 

I do, however, feel that this form of dismissing autistic people's emotions, no matter how unusual, is not only a form of ableism but also what some of us in the community have come to call "unintentional gaslighting." And yes, that will be the topic for the next blog post.

Is It Ableism? Part 6: Accommodation

As always, names of people are changed (except in the case of Richard Lavoie).

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?

In a seminar from the 1980s, special educator Richard Lavoie discusses the concept of fairness and what accommodation means in the context of education, something barely understood until pretty recently. In a clip that has stuck in my mind ever since I first saw this video in the late 1990s, Lavoie says:

As I speak to parents and teachers all over this country, I see classrooms and families being run... based on a child's concept of fairness... Fairness does not mean that everyone gets the same. Fairness actually means that everyone gets what he or she* needs...

...I'll say to a teacher, "Jody's gonna be in your class next semester, Teacher. She's a wonderful kid, very bright kid; she's gonna do very well in your math class. But she's got a learning disability. It's called a far-point copying problem, and she can't copy off the blackboard. So here's what I'd like you to do: when you put problems on the blackboard for everyone to copy, I'd like you to write up an extra set for Jody, and give that to Jody..." Invariably, the teacher will say, "I can't do that." And I say, "Why not?" There's a lot of answers I'll accept. I'll accept "Because I don't know how," I'll accept "Because I don't have time," I'll accept "Because I don't believe in mainstreaming," I'll accept "Because I don't like Jody." I'll go to the mat with a teacher and I will discuss any one of those answers with a teacher. The one answer I will not discuss, the one answer that I think is beneath contempt and beneath discussing is the answer I hear most often, and that is, "I can't do that for Jody..." Why? 

In unison, a few of the participants state the answer that Lavoie was looking for: "It's not fair to the others." Lavoie comments, "It's got nothing to do with the others. Jody needs it; the others don't. It has nothing to do with the others." To illustrate the absurdity of this logic, he provides a hypothetical example in which one of his seminar participants, Carolyn, goes into cardiac arrest. Although he knows CPR and can save her life, he refuses to help Carolyn, saying, "Hey, Carolyn, I'd like to help you; I really would. But, heck, we've got thirty people here. I don't have time to give CPR to everybody, and it wouldn't be fair to only give it to you."**

Lavoie wraps up the section by saying, "We're not going to be able to work successfully... with a learning-disabled child in a mainstream classroom until teachers and parents begin to understand that in order to be fair, we've got to treat them differently."

I feel that this more-enlightened concept of fairness is now far better understood-- at least in the context of a kid with an academic learning disability. We still have a long way to go when it comes to applying it with autistic people, and when I was a kid "a long way to go" wasn't even a qualifier: in the 1980s and 1990s, a more ignorant time before the term "autism spectrum" was part of mainstream discourse, we weren't even "on the way". 

As I discussed in previous installments of this series, my parents, as well as many teachers, camp counselors, and employers regularly treated me with the absurd concept of fairness that Lavoie describes. Phrases that I heard over and over included, "You can't expect people to understand [X] about you, and you need to learn... bla bla bla." Intentional or not, the implication is, "You don't see everyone else expecting the kinds of accommodations you do, and it's not fair for you to expect 'special' treatment." The things that I needed people to understand and accommodate were my chronic anxiety, my meltdowns and my need for direct communication. 

My need for direct communication has always been the most important and, especially when I was a kid, it has played a critical role in curbing my anxiety and preventing meltdowns. Like many of us on the spectrum, I don't do "hints." I can't. It's not that I don't know when somebody might be dropping a hint, but the ambiguity of this communication is very disconcerting to me. I started to be able to detect possible "hints" in my teenage years. What was really frustrating was that if I went to my parents about hints I thought I might be getting, they told me I was reading too deeply into things. On the other hand, if I decided to put aside my fears and go with the assumption that something wasn't a hint, I often ended up getting in trouble and then told, "You need to learn to take hints." Sometimes hints were being dropped, sometimes they weren't. This frustration with ambiguous communication has followed me well into adulthood.

Because I have been hurt deeply by so many people (including my ex-best friend of fifteen years), I don't have the emotional energy to deal with the possibility that somebody might be "dropping hints" or otherwise not telling me something and expecting me to read their mind. When I find myself starting to become friends with somebody, I make it very clear that I expect them to be direct when talking to me or it's not going to work. Oh, what's that you say? Many people are uncomfortable being direct? Well, tough shit. Think how uncomfortable it is for me having to guess all the time. I can't be the only one making accommodations. If I am doing something that is bothering somebody, the only way I will stop and adjust my behavior is if the person tells me directly. I also need people to be direct with me when it comes to remote communication (texting, etc.) or I at least need them to explain what their habits are in how they handle remote communication. I recently had a discussion about this sort of thing with someone I reconnected with at the beginning of the pandemic.

About a year and a half ago, completely on a whim, I messaged Chuck, a counselor from my 1997 group trip to Israel. We had been on Facebook together for years but never really communicated. We talked for a little bit, and then I asked him if he wanted to video chat. I honestly didn't expect that we would be talking for more than ten minutes when we finally connected about a week later, but I just thought it might be interesting to talk to him after all these years. To my surprise, we hit it off right away, and ended up talking for an hour and a half. Chuck and I have since had ten more video calls. 

In our calls, sure, we talk about the funny things that happened during the summer that we were in Israel together. A couple times, we also laughed about how back then I had a huge crush on him and chased him around like I was Pepe LePew and was a real pain in the ass to him (my words, not his). But most often, we talk about current events, politics, religion, and science (we're both very interested in brain science). I briefly met his wife on one of the video calls, and she seems pretty cool. Chuck and his family live nearby and we're going to get together sometime after his eleven-year-old daughter is able to get vaccinated. 

There was, however, something that bothered me a little: Lately, when I've sent out invites for our video chats, I have had to follow up once or twice before Chuck responds "yes" or "no". I have been taught repeatedly, often learning the hard way, that this is the kind of hint I need to watch out for in which the other person is losing interest (and sadly, I've also been taught many times that I'm the kind of person people lose interest in). I found this confusing because Chuck has always been very direct. This was true in 1997, and it's true now. So in our last video call I asked Chuck straight out if he was trying to tell me something. I said if he was he needed to tell me directly. I told him, "I feel like a little kid who is asking her cool older cousin, 'Will you play a game with me? Please? Please?' until he finally throws up his hands and says, 'Fine! You win!'" and that it's ultimately the other person throwing the kid a bone, not playing a game with her because he actually wants to. I told Chuck that it made me feel like I was being invasive, pushy, and so forth, and I didn't want to do that. I told him that I understand that things come up, people get busy, etc., but what I really didn't understand was why taking thirty seconds to say "yes" or "no" was so difficult unless he was trying to drop a hint. 

Chuck assured me that he wasn't trying to drop hints, and that if he didn't want to talk to me anymore he'd tell me straight out. He explained that he is simply bad at following up with people, and even reaching out to them, and that lately he has been especially busy. He also said that he would try to be more respectful of my need for a concrete answer and would try to get better at giving me one, though he couldn't promise anything; he finds that when things are too busy, he's not even thinking about giving someone a simple "yes" or "no". Chuck even told me that if he doesn't respond to an invite that it's fine if I keep following up until he does, saying that he doesn't find it pushy. He said, "Look, you and I go back a long way. We have a history. We didn't start out as friends, but now we've become friends." I smiled and said, "I was a pain in your ass." We laughed about that. Chuck also said, "I love talking to you. I get a lot out of our talks, and I feel like I've learned a lot from you." He then surprised me by saying, "I've actually been giving you more of my time than most of my friends, but I'm not 'throwing you a bone.' It's out of empathy. I know that these chats are important to you and I also realize that we're in the middle of a pandemic and you live alone." I certainly don't expect him to give me more of his time than most of his other friends, but I appreciate him for caring enough to do so.

This is an example of what accommodation looks like. Chuck seems to understand how I operate and knows that I need people to be direct with me. While he admitted that he might not get better at following up to my invites, he responded to my concerns in very direct and concrete terms. He told me how he viewed our friendship and what the boundaries were. I admitted that I had been worried that Chuck was treating me differently than his other friends-- not in the understanding and accommodating way that I just described, but in the infantilizing, patronizing, alienating way that many people in my life have felt that they had to over the years. What feeds this fear in me is that it's been drilled into my head that certain people-- older and married, specifically-- are off-limits to me, that they're in this exclusive club and that any interaction I have with them will be invasive by definition. This, of course, is a chronic insecurity that I am trying very hard to undo. 

I have just provided an example of what treating someone differently through accommodation and understanding looks like. But what about treating someone differently through infantilization? It's a very fine line and will be the subject of the next post in this series.

*Yes, I realize that this language isn't inclusive to non-binary people. Remember that this video was made in the 1980s. 

**I actually think there's a better example that illustrates the absurdity of the concept of fairness that teachers and parents were operating under back then: In my discussion in Part 3 about the ubiquity and eventuality of some level of visual impairment for nearly everybody, I talked about how this "disability" was readily accommodated with glasses. Imagine a teacher telling a near-sighted student, "You can't wear glasses in class. It's not fair for you to wear them when nobody else is."

 

 

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.