Is It Ableism? Part 5: Is "Overcoming" Worth It?

Links to previous installments of this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability 

Part 4: Internalized Ableism

In Part 1 of this series, I talked about being annoyed that my dad praised me for "overcoming" autism, that it felt like a backhand compliment. In Part 4, I discussed having to spend many years working rigorously to rein in things like meltdowns and inappropriate jokes. In the eyes of my dad-- and likely many others-- this is something I should be proud of, and I'm not sure how to respond to that.

Don't get me wrong-- I'm glad that these days I get along better with people and that my meltdowns are few and far between. But, as I've said, to reach this point I had to work rigorously (and in the case of the meltdowns, also take heavy doses of SSRIs). So many times when I failed to do what was expected of me, people often responded with extreme and judgmental reactions. The message I got in the aftermath was always the same: that I should accept even the most extreme reactions as reasonable and that I didn't try hard enough. Often, my parents would reprimand me for being "immature" and "inappropriate", saying, "You have to learn how to behave appropriately." On more than one occasion, Dad said, "This reflects on us as parents." 

Well, shit. After a while, of course your behavior is going to change, at least somewhat. And why not? I think one can browbeat a kid into doing just about anything*. It makes me think of left-handed people who eventually learned to write with their right hand, not because they did so on their own, but because superstitious teachers and parents forced them to.

And that's the problem. Just as left-handedness was once seen as "abnormal" at best and "Satanic" at worst, up until very, very recently, attitudes and behaviors of autistic people like me were seen as superficial attributes. Sometimes, they were read as symptoms of "bad parenting". Rarely did people speculate that these were signs of a brain that was hardwired differently. 

Right now, I can hear people asking, "Oh, well if you're interacting better with people today, isn't it worth it?" No. The end doesn't justify the means. Although I don't have PTSD, my therapist says I have a couple of signs of it. One of these signs is the occasional nightmare. Often, this is in the form of a vivid dream in which I am a teenager and in a screaming fight with my parents. The are two versions of this dream: 1) That I am fighting with my mother who is telling me I don't act and dress feminine enough and 2) We are at a gathering somewhere, and my parents are reprimanding me about something unforgivably inappropriate that I did. I am screaming and crying desperately, trying to explain things to them and they won't listen. Both dreams are so intense that sometimes I even wake up screaming.

Another horrible dream I have involves close friends excluding me-- sometimes deliberately and sometimes because they don't seem to notice me. The latter scenario-- the feeling of invisibility, that nobody would notice if I dropped off the face of the Earth-- is something that followed me throughout my childhood, teenage years, and occasionally in adulthood. I actually had this dream a couple nights ago. In the dream, I was celebrating my birthday with a bunch of people at some weird indoor water park/escape room. In one of the challenges, we had to pair up. There was an odd number of people, and I was the only one who did not have a partner. Nobody even seemed to notice that I was left out. I said something like, "Great, now I can't even have a birthday without something like this happening to me." Angry that nobody even thought of me at my own party, I turned to my guests and shouted, "Fuck all of you and the horse you rode in on!"** before storming out of the building. 

So the short answer is, no, it's not worth it. It would've been better if I'd been met with more understanding and patience growing up, as I would if I were a 21st century kid instead of a 1980s and 1990s kid. I would've received guidance but not been under constant pressure to "change". Neurotypicals and autistic people communicate very differently, and they need to meet each other halfway. The onus can't be entirely on the autistic person. It causes anxiety, stress and, for many people, PTSD (or in my case, symptoms of it). For neurotypicals to do their part, they should be expected to make some accommodations, just as able-bodied business owners should be expected to provide wheelchair ramps for wheelchair users.***

What does accommodation look like? Stay tuned.

*Then again, it depends on the disability, the extent of which is just an accident of nature, isn't it?

**I realize that this phrase makes no sense in the context of my dream. But dreams often aren't logical.

***Truthfully, not enough businesses have this accommodation. At least, though, government-funded spaces such as schools and libraries in the United States are legally required to provide this.

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.

Is It Ableism? Part 1: Revisiting the Dark Ages

As always, names of people and places changed.

When I was visiting my parents in July, my dad and I were in the car having a discussion and he, for reasons I still don't understand, brought up a completely unrelated incident from the summer of 1999.

"I remember as your mom and I were leaving after dropping you off at Camp Maple Hill for staff orientation, I happened to turn around and saw that everybody except you was looking at Benny [the camp director]," Dad said. "You were looking off in another direction, and I thought to myself, 'This isn't going to work out. In a couple weeks, Julie's going to call us to pick her up because she got fired.'"

And that's exactly what did happen. That my dad brought up this incident so cavalierly and completely out of context of the discussion topic upset me. It also upset me because he had brought it up three or four other times in the past eleven years. Each of those times I told Dad not to mention it because I found it upsetting, and yet he kept forgetting and approached it with the same casualness one would have when discussing the weather. 

I don't remember the incident that Dad describes, and I feel it's unfair to assume I wasn't listening just because I was looking off in another direction. I got fired from Camp Maple Hill for reasons that were unrelated to what he witnessed that day in June of 1999. My termination had largely to do with the fact that, against my wishes, I had been placed with an older group of kids instead of the younger kids I had requested; these kids often took advantage of me and one time even snuck off during a camp outing to a water park. Additionally, other staff members misinterpreted my strange sense of humor and felt the need to report it to Benny, who often yelled and screamed at me for my missteps. According to Benny, an Australian staff member left early because I had managed to make her severely uncomfortable. I couldn't even imagine what she thought I was capable of doing to her that she felt the need to go all the way back to Australia. Even twenty-two years later, this is still something I feel horribly guilty about. Sometimes I find myself wishing I knew her last name so I could look her up on Facebook and apologize.

By the time Dad and I got home, I was feeling angry: angry at myself for messing up so badly at Camp Maple Hill-- which I had tried working at because the camp I went to as a camper, Camp Negev, wouldn't hire me as a counselor-- and angry at Dad for not respecting my repeated requests not to bring up the story about me looking away when Benny was talking during orientation.

I felt a familiar surge of adrenaline, threats of the fight-or-flight response beginning to brew. I said sarcastically, of Dad's thoughts to himself after dropping me off, "It's nice to know that you had so much faith in me."

Dad said, "Well, there were problems in the past."

The word "problems" proved to be a catalyst that blew open a mental vault of memories that I still remember with a raw intensity as if they happened last week instead of decades ago. The word is among many other words and phrases that I have come to think of as catalysts*. Others on this list include "immature", "annoying", "...deal with you", "...being difficult", "inappropriate", "...afraid of you", "aggressive", "What's wrong with you?", "You are/were the only one...", "Everybody except you...", "You need to learn...", "You refuse to learn..." and others. These words and phrases were some that I heard more times than I can count throughout my childhood, teenage years, and well into adulthood. 

I went through life thinking of myself as someone who constantly caused problems, who constantly made things difficult for other people and committed unforgivable sins. I was criticized regularly by peers, teachers, camp counselors, employers, and my own parents. I was apparently someone who had to be dealt with, put up with, handled... you name it. I was, in short, A Problem. People who told me I needed to learn to understand other people's perspectives in the same breath said I couldn't expect them to understand mine. 

In Girl Scouts when I was in 4th grade, if the other girls were making fun of me and I finally started screaming and crying in frustration, it was only expected that the Girl Scout leader would tell me that she was already upset because her grandfather was in the hospital and she didn't want to deal with any of my "nonsense." In middle school, if I missed some subtle social cue for the millionth time, I was supposed to understand that one friend after another would ditch me after having given me, according to them, "many chances."  If on my 1997 trip to Israel, one of my counselors told another one, "Julie drives me crazy and I don't want to deal with her**," I was expected to reflect on how I, as a sixteen-year-old kid, had continually made things difficult for a twenty-seven-year-old woman. If at Camp Maple Hill, I made a smartass remark to other staff that for God-knows-what-reason other people took seriously and felt the need to report to Benny, it was my fault for not knowing how they would react. 

It's been a long, arduous process to re-contextualize events in my past as events experienced by an autistic-- and ultimately well-meaning-- person, one with an undiagnosed disability surrounded by people who rarely tried to understand. I've had to work on re-contextualizing such events as, "Life was difficult for me," rather than, "I made people's lives difficult."

As memories like these rapidly cascaded through my head at Dad's statement, he then tried to assuage my visibly accumulating distress by saying, "But you've overcome it."

"And what if I hadn't?" I asked evenly, glaring at Dad.

"Then we would be dealing with it," Dad said.

And there it was, another indication of me as someone who had to be "dealt with." Dad's intended compliment was a backhanded one, one that left many things unsaid, such as how insufferable I had been in the past. While that wasn't necessarily his intention, that is what I heard.

Then, I quipped sarcastically, "Oh, okay, so I'm more like a neurotypical person then? Is that what you mean by 'overcoming it?'"

Dad denied this, and then in confusion asked me why this conversation was so upsetting. I stopped myself short of saying, "It's ableist," but that is what I was thinking. I didn't say it because I wasn't-- and am still not-- ready to invoke that broad stroke. Instead I said, "It's-- it's complicated." Because it is.

There are many people in autism groups on Facebook who are living with their parents, people who can't hold down a job because they can't mask well enough to pass as neurotypical, people who can't even have a telephone conversation because it's too stressful for them. I thought to myself, Is the fact that I "overcame" so many of these issues a testament to my character or an accident of nature, combined with severe pressure from society, ultimately a survival mechanism to prevent me from being traumatized further? Does this make me "better" than those who aren't able to live independently? If I hadn't "overcome" the issues in question, would it mean I was a failure? I didn't have an answer to these questions, and I still don't. The question of "is it ableism?" along with the question of whether I've also suffered from internalized ableism also hangs in the air, and I've been thinking about it for the past few months. 

The fact is, ableism isn't always easy to define, but it's definitely real. It's also a term that is sometimes overused, so I'm trying to be careful. There is a lot to unpack, which is why it will take a series of blog posts instead of just one. Stay tuned.

*I am avoiding using the word "trigger" because it is a medical term for a phenomenon affecting those diagnosed with PTSD. I feel that it is often misused and overused and I don't want to fall into that trap. 

**A friend on the trip overheard this exchange and told me about it a year later. 

Can We Stop Alienating Each Other?

I would like to make a request to the autism community: can we stop alienating each other?
 
Lately, I have grown very disheartened by the interactions in autism groups on Facebook. Many of us on the autism spectrum, particularly those who came of age in the final years of the twentieth century or earlier, have a lot of emotional baggage. We have experiences rife with interpersonal trauma that generally stem from misunderstandings by peers, teachers, camp counselors, and even our own parents. We have experienced a lot of loss: being kicked out of places, losing lifelong friends, being backstabbed by people we trusted and, overall, being condemned by one person after another. Often, we did not know what other people thought we did wrong, and any attempts to explain our actions were greeted with the message that perception and impact, rather than intent, was what mattered. It really hurts to go through life constantly at the receiving end of this dynamic. It also hurts that the people who thought they were supporting us, such as our parents, ended up invalidating our experiences and feelings on a regular basis.
 
Why, then, are we in autism groups doing it to each other? For example, there is a lot of controversy about the role of the term “Asperger’s”, and rarely a week goes by without some protracted, heated thread popping up in one of Facebook’s many autism groups. The controversy is due to its namesake, Hans Asperger, being a Nazi and that “Asperger’s” is used to describe people at a particular, “high functioning” end of the autism spectrum. People who object to the use of this term see it as ableist and endorsing a Nazi eugenicist. Whether the use of the term “Asperger’s” is still appropriate is a discussion worth having (and let’s not forget that many conditions are named after horrible people), but unfortunately a civil discussion never happens. Instead, those who object accuse its proponents of bigotry and internalized ableism. If the person does not admit that the other person was correct in their mindreading, then they are accused of being cold, callous, and not caring about others’ feelings. Often, moderators in these groups end up turning off comments after these threads turn into flame wars.
 
Another recent discussion in an autism Facebook group involved the topic of ghosting, a phenomenon where someone abruptly and without explanation halts contact with you. I assumed, perhaps erroneously, that the conversation was about being at the receiving end of this behavior—since many of us on the spectrum have repeatedly been in that position— rather than being the one engaging in it. I commented that I thought ghosting was cowardly, relating a painful memory about having been ghosted by my former best friend of fifteen years. Someone else told me that my feelings betrayed that I was a “toxic person.” This person—and others who backed her up—said that thinking a ghoster owed a ghostee an explanation was akin to someone saying that their partner owed them sex when they didn’t want it. Others in the thread commented that their own communication skills are not good and that sometimes they feel that ghosting is the only option for them. Again, these are points worth discussing, but instead I—and others who shared my viewpoint— was bombarded with accusations of ableism, callousness, and triggering other people. That was when I left the conversation and, admittedly, out of morbid curiosity, continued to watch it unfold without commenting. Ultimately, the thread was closed for further comments after more people accused each other of ableism and triggering comments.
 
Why can’t we even have civil discussions about these issues without accusations of triggering other people, of “coming from a place of privilege” if we feel a certain way about something? Why is reminding others in the group to please speak in a civil manner considered “tone policing” and “oppression?” We know how frustrating and painful it is to have someone assume the worst and treat us with intolerance. Can we at least make an effort to be more understanding and forgiving or at least civil with one another?
 
There seems to be something very insidious that happens in these threads: as soon as one person accuses another of triggering behavior, ableism, invalidation, and so forth, any attempt for the other person to defend their position only serves as further evidence that the accuser was right in their perception. Intent, after all, is meaningless, and apparently only impact matters. The last thing anybody wants is to be accused of ableism or bigotry of any kind, and it seems that the only option to keep the peace is to kill further thought, let alone further discussion, and ultimately agree with the accuser.
 
All this type of interaction ultimately does is further marginalize people within an already marginalized group. I would have thought that with the histories of gross misunderstanding we on the autism spectrum get from neurotypicals that we would want to refrain from this sort of mindreading behavior with each other. But sadly, I see an already frustrated, hurting population eating its own.
 
Can we please, please just stop alienating each other?

Frustration, Anxiety, and Tension Part 2: A Witch's Brew of All Three

In my previous post, I discussed the way frustration, anxiety, and tension can mount as you try hard to better yourself, only to be dismissively told that you're not trying. But what happens when these demons overwhelm you and you end up doing something stupid and get into even more trouble than before?

One particular incident happened to me at age eighteen, on a Saturday morning in 1998 during my senior year of high school. I was taking a figure drawing class at a local university, and during that time in my life, I was dealing with a lot and my anxiety was like a raw exposed nerve.

First, I had just finished what would’ve been my final summer at Camp Negev. I had been in the C.I.T. program that summer, and it was clear that I would not be hired as a counselor the following year. Camp was the only place I’d ever felt comfortable, and it was being taken from me. This was coupled with knowing I would not be allowed to go on the gap-year Israel program affiliated with camp. Triple that with the stress of getting ready to apply to art school to study animation. It was becoming apparent from looking at the other students’ work that they were much better than me. Did I even have a chance of getting accepted to art school? That was quadrupled with the constant feeling that my parents didn’t understand me and didn’t support who I was. Even if not their intent, they often made me feel I had to change.

What many people didn’t understand was that I was thinking about these issues constantly, as if a little bug were in my ear whispering harsh criticisms to me: “You can’t draw well enough.” “You’re a horrible person and nobody at camp wants you back.” “You can’t spend a year in Israel because there’s something wrong with you and you aren’t fit to be around normal people.” “You’re not feminine enough and you should have outgrown that tomboy stage years ago if you want anybody to accept you.”

To make matters worse, I noticed early on that the teacher of the figure drawing class did not seem to like me, often talking to me in a condescending manner. I don’t remember specifics, but I do recall that I was trying to convince myself it was just my imagination. After all, my own parents often commented that I "misinterpreted" and "read too deeply into things"-- even when I knew damn well what I was looking at. One day when I was in the bathroom, a girl from the class commented, “I don’t like the way the teacher talks to you.” At least there I felt validated, that this wasn't my imagination. I was also glad to know that somebody was on my side.

As time went on, it was becoming increasingly clear that the teacher not only didn't like me but genuinely disliked me. I watched in resentment as she got along well with the other kids and really seemed to like them. They also seemed to like her, often laughing together like old friends. Her loud, boisterous laugh got on my nerves, as if it were rubbing in my face how the others could get along with her and I couldn’t because there was something wrong with me. What indeed was wrong with me, I wondered, that made her feel that she didn't have to be nice to me? Once, she even chastised me for arriving two minutes late for the 10:00 class. A week or two later, she assured another student who apologized for arriving at 10:07 that "seven minutes is no big deal."

At some point during the semester, something happened that made the teacher take me into the hallway in frustration. Unfortunately, I don’t remember what it was, but I am confident that if I found a record of the incident somewhere, it would come right back to me. We had a tense conversation that ended in some kind of truce, for lack of a better term. At some point during the discussion I mentioned that other teachers I’d had in other classes at the school liked me.

But the dynamic between us did not improve.

In the second-to-last week of class, I was particularly on edge, the raw exposed nerve particularly irritable from the accumulating tension over the past few months. The teacher did her signature laugh when talking to one of my classmates. For some reason, it was at that particular moment that I had reached my limit. I whispered, “Aw, shut up!” At least, I had meant to whisper it, but I accidentally said it loud enough for her to hear.

The teacher yelled, “Excuse me? Who did you just tell to shut up?”

The room fell silent, all eyes on the teacher and me.

In a panic, I stammered, “Nobody. Myself.” The teacher grabbed me by the wrist like I was an unruly child and pulled me into the hallway. Eyes narrowed into slits, she leaned forward, inches from my face. She yelled at me about every imperfection I had: speaking out of turn, getting openly frustrated with my artwork, not always following directions (I guess she thought this was intentional). At one point, she said, "I have tried putting myself in your shoes. I realize that there is something wrong with you." She also said, “You are going to fuck yourself over if you think you can go through life acting like this. I have had it with you. You make me feel like shit! Oh, you know all those other teachers who you said liked you? I’ve talked to all of them and they said they didn't like you. I have been pulling every string that I can to make sure you don’t go to this school.”

Humiliated from having heard my own self-criticism come out of another person, I sheepishly said, “My teachers in high school like me.” Her response was an even more exaggerated version of her signature laugh, as if it were the most ridiculous thing she had ever heard-- how could anybody like me? Then she told me I could come back into the room and work but I wasn’t allowed to talk to her. She said if I had questions to ask the other students.

Needless to say, I only went back to get my things. Then, I found a payphone and called my parents who, thankfully, had cell phones back then. They were at a restaurant with a friend. Just as their food arrived, they got my call and had to leave to pick me up. When I found out this information, I thought to myself, "God, my parents can't even have breakfast without me fucking things up. What is wrong with me?"

My parents arrived, and I waited outside with my mother while my father went in to talk to the teacher.

When Dad came back outside, he told Mom and me about the conversation he'd had with the teacher. He said that as soon as the teacher realized that the guy who came into the room was my father, she sent her students on break and vigorously shook his hand with both of hers, obviously knowing that she was in trouble. Then, when my dad called her out on saying that she was going to make sure I didn’t go to the school, she said, “Oh I just mean if she comes I’ll make sure she gets more psychological support.” Dad said, “I’m her father and I’ll be the one to decide what psychological support she needs, not you.”

In a desperate attempt to explain the situation to my parents, amid tears I said, "It's my OCD!", invoking my recent (and ultimately incorrect) self-diagnosis of obsessive-compulsive disorder to explain why I had the issues that I did. Dad shook his head and said, "No. This is just another case of you saying the first thing that pops into your head." On the car ride home, Mom told me that what I had done was inappropriate and that I needed "to learn to behave appropriately." It frustrated me that my parents seemed to think I was acting like this because I wanted to.

Don't get me wrong-- my parents were pretty pissed off at the teacher, but at the time they failed to grasp the reality of situations like the above. I had tried so many times over the years to explain that outbursts like these were the end result of trying to contain myself and the unbelievable anxiety I felt, but they never seemed to get it. Aside from the autism spectrum being mostly unknown, concepts like "chronic anxiety" were not topics of mainstream discussion. "Anxiety" was understood to be a momentary discomfort, not something that engulfed your entire life. I didn't even use the word "anxiety" to explain myself; rather, I often invoked a rush of adrenaline and the fight-or-flight response associated with it. I only even knew what these things were because Dad once told me about something he had read about them in college.

Years later, I found some notes Dad had taken when he called the school the following Monday to talk to the director of the Saturday program. Apparently the other teachers hadn't wanted me in their classes either.

This incident happened almost twenty-three years ago, and this type of issue that I had is largely under control. But the memory still hurts sometimes. It hurts because this was not the case of a teacher who was mean to everybody else also being mean to me. And the message that I got from the incident was one that I continued to get well into my adult life: That I am just "too much". I've been long expected to understand that I have had this kind of profound and negative effect on people that violates them in horrendous ways, and that their extreme reactions, while not ideal, are understandable under the circumstances. In fact, despite how upset my parents were with the teacher, they actually urged me to go back for the final class-- which I had no intention of doing-- because in doing so I would convey the message that I wanted to be "mature". That carries the implication that my teacher's response, while wrong, was not egregious. And no, I did not go back.

It also hurts because when I discussed this incident in autism groups in Facebook and asked if anybody had similar stories, all the "similar" stories I got were ones involving them as elementary school kids missing directions or crying in class only to get indignant hell from a teacher. None of them were stories about them in high school getting in trouble, let alone for saying something stupid. I suppose it's possible that they're just not writing about them because they're too embarrassed. But I get the impression that many of them learned early on that if they just shut up they would stay out of trouble. I don't know if it means that I was exceptionally bad at masking, that it was actually a sign that I was mentally stronger, a combination of the two, or neither.

I realize that we as a society have come lightyears since the '90s and that if this had happened today, there is a good possibility that the teacher would have been fired on the spot. But unfortunately, I was a teenager in the '90s and I have this story in my knapsack. It still hurts, and it's still confusing.

I still have the same self-doubts sometimes.