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 My book is outdated, and I am now prioritizing writing fiction.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.

The Perpetual Clean Slate

I left my public school at the end of 5th grade (age 11) and and spent my 6th grade year (age 12) at a K-8 private school, where my mother was teaching.

A fresh start; a clean slate.

Then Mom got a job in the public schools and could no longer send me to the private school, as it was too far away.

An entire year had passed since I had been in the public school system, and since a year is a long time in childhood, 7th grade (age 13) was another fresh start (sort of).

Another clean slate.

When I started going to Camp Negev in the summer after 8th grade (age 14), it was another clean slate, another fresh start. Since I didn't realize that I would be zoned for a different high school (10th-12th grade in my district) from most of the kids at my middle school, I was sure my camp would be my last clean slate until college.

My last clean slate until college? Yes, what a lot of pressure to work under.

As stated, I was zoned for a different high school from most of the kids in my middle school.

Another clean slate, another fresh start. 

I went to college.

Another clean slate.

I went to grad school.

Another clean slate.

I took a job at a library in Maine. I got fired. Then I took a job at another library in Massachusetts.

Another clean slate.

I got fired again. I decided was done with libraries.

So what happened to all these clean slates? I went to the small private school and generally got along well with everyone else. But then I had to go back into the public school system. I was bullied relentlessly, verbally and sometimes even physically. I didn't feel safe going to school. My parents and brother didn't seem to really understand that I was being bullied. Back then, people didn't really take bulling seriously, and the term "bully" meant "the school bully", as caricatured on The Simpsons, for example: The kid who indiscriminately shakes down everybody for their lunch money. Not a group of kids who targets one person. No, my parents and brother told me that I brought the treatment on myself with my relentless wiseass comments and because I didn't dress and act feminine enough.

I went to Camp Negev. At last things seemed to be going right. I was with a group of kids who understood and appreciated me. But then in the CIT program, I learned that many of the counselors were wary of me. They said that I was inappropriate. It's true, I was sometimes, with my jokes, etc. Part of the reason I sometimes acted inappropriately was that I was rebelling against my parents because they never let me do anything irreverent, even with my cousins around. I felt asphyxiated. So the dam burst, so to speak, at camp. But I did come to the CIT program prepared to "grow up", as I was no longer a camper. However, it was too little too late. And I should note that the other counselors' concerns about my being inappropriate were hypocritical as many of the counselors didn't care about the kids. They belittled the ones who were different, left them alone in cabins, and smoked weed in the staff lounge. Sometimes they even came to activities while high. They were just inappropriate in more socially acceptable ways. I wasn't given a group of kids until second session, and despite the ways that I had toned myself down for that summer, I wasn't hired as a counselor the following year.

I found another camp to work at. I made some stupid mistakes and got fired, so then I found another one.

I got a fresh start in the summer of 2000, working at a camp in Michigan. I was hired again in 2001, but in 2002 I had to come back as a volunteer, as they wouldn't rehire me.


As for high school? I was very quiet because I was so worried about screwing up. The result? I wasn't bullied, but I was too timid and didn't make any friends. You can't live like that. Remaining withdrawn in high school is one of my biggest regrets.

In college? I made friends but starting junior year, most of the teachers didn't like me. I wasn't used to this; in high school teachers generally did like me. When I went to grad school, I got a fresh start and fortunately the teachers liked me.

At the library in Maine?

The parents were wary of me and constantly reported me to the director. I was fired. I read books about child development and came to the library in Massachusetts, armed with more knowledge to help me work better with little kids. Not good enough. I was fired again after four months, although this time there were only two complaints. The rest of the staff liked me, but my boss didn't. I knew by the end of the first week that she was avoiding me.

Mom told me, "You'll get a fresh start" when I entered 6th grade at the private school and 7th grade in the public school system that I grew up in. She told me that when I went to summer camp, to high school, to college, when I worked at the camp in Michigan, and when I started at the library in Massachusetts.

I cringe about "clean slates" and "fresh starts". A clean slate is only clean so long as you can disguise who you really are. Ultimately, it's less about learning to stop telling inappropriate jokes and whatnot (although it may seem that way superficially) and more about not letting who you really are come out. Whether or not my parents realized it, when they told me, "You'll get a fresh start," they were really saying, "Try again to be someone you're not and things will go well." And as you can see, many of these "fresh starts" (though not all, by any means), ultimately failed.

It is for this reason that experts advise parents of bullied kids not to change schools unless it's to a private school or some kind of "special" school. You bring who you are to any new situation, and when the results are the same, the message that one gets is that they've failed, over and over again.

Imagine what it feels like to go through life like that.

A Visit from the Monster

I've been having a case of The Monster all week. Just to remind you, The Monster is when I find myself in a horrible state of mind because of something I've done wrong. Actually, it's often more as a result of people's reactions to what I've done wrong. Even if the reaction is something as benign as, "You have to make sure you don't say things like that", it can trigger a cascade of intense, overwhelming emotions. I feel such horrible mental pain to the point that it's practically physical. I find myself angry at myself and hating myself. In fact, at work (it's a low-paying temp job) this week I had to go into the bathroom to cry. I was hyperventilating and I had to stop myself from howling from the agony I was feeling. I went back to my desk, still in tears, and a couple people asked me what was wrong. I told them that I was just going through a rough time, that it was "personal issues, you know?".

The slightest trigger can bring back a bunch of old memories, many of which I'd put to rest up until two years ago. What happened two years ago, you ask? Let me start by saying that two years ago I was in a better mindset that an I'd been in, well, ever. I'd lost 40 pounds, I was getting into excellent physical shape and developing athlete's heart, and my self-esteem was through the roof. I recall one day specifically when I had just left the Dodge YMCA in Brooklyn, reeling from endorphins from my latest killer workout. I walked toward the subway, plugged into my iPod and listening to a song that had a message of hope. It perfectly complemented the wonderful changes I was making to my body and my brain. At that moment I felt like someone could come up to me with an AK-47, shoot me, and the bullets would bounce right off.

That was early 2013. Then I made the biggest mistake of my life: I left New York City and took a job at a library in Maine. Yes, in my infinite wisdom, when I went back to school for library science, I thought it would be fun to concentrate in children's librarianship. I thought it would be fun to do activities with kids and that I'd just have fun with them. I mean, it was fun doing just that when volunteering at a New York library for seventeen months. But what I didn't count on were the parents, which were pretty absent in the library in New York that I volunteered at. The short version is that the parents in Maine constantly complained about me, saying that I was mean to their kids. I was finally fired after only four months when parents told the library director that their kids were afraid of me. I was 5'2" and weighed 122 pounds. I don't know what the parents thought I could possibly do to their kids, but truth be told, this wasn't the first time I've heard that people have said that they are afraid of me.

The Monster was awakened.

I bounced back and took a job in a library in Massachusetts. Once again, I was fired after four months. To my knowledge, only two parents complained about me. But the library director took those complaints very seriously. When parents complained about the other librarian, these complaints were just laughed off. Why? My shrink says she thinks that the director saw right away that there was something off about me and was thus more sensitive to my infractions. In fact, this phenomenon of not being able to get away with little things when neurotypicals get away with outrageous things is a very common Asperger's experience. Needless to say, I want nothing to do with working at libraries anymore.

The Monster was awakened again, and I haven't been able to put him to sleep. At most, he lies dormant, waiting for the next thing in my life to go wrong and to come back. When he does, he constantly whispers in my ear that I bring my problems on myself; that I cause people distress and misery; that I'm creepy, defective, and narcissistic; and that I deserve bad things to happen to me, both physical and emotional. He tells me that he hopes that somebody beats the shit out of me so that I get just punishment for all the problems I cause and my refusal to learn from my mistakes.

Just to clarify, this is not a literal voice-in-my-head. But it is very powerful. I have tried all week since the Monster's initial visit on Monday to neutralize him. I've gone running (even though I shouldn't because I still haven't recovered from an injury to me knees from last year) and I've gone swimming. It provides temporary relief, and I feel a little better since Monday, but it's not enough. I'm still reeling from some anger. I don't even know who or what I'm angry at anymore, but I just wish the Monster would die. The best I can do now is just wait until he lies dormant again.

Don't get me wrong, even when I was doing well emotionally the Monster would still come sometimes. But at the most he would stay for a couple hours and then I would be fine again. Now he comes for days at a time, and in this most recent instance, it's been closing in on a week.

I am just so sick of a lot of things.

I am sick of…

1. ...Knowing that if I get into a conflict with somebody, even if they're at fault, I inevitably have played a role in the incident.
2. ...People telling me "It's your overall personality; I can't even explain it", expecting me to just smile like this while they say it, something no neurotypical would ever be expected to do. In fact, BOTH LIBRARY DIRECTORS said this to me. 
3. ...That a lot of people in my life-- my brother, cousin (and yes, I'm close with both), and some of my friends who've known me longer-- feel entitled to wag their finger at me and lecture me like I'm a child.
4. ...My dad framing my life as a case of maturity. Even when he thinks he's complimenting me in that regard, it's a backhand compliment. He says, "You've matured a hell of a lot over the years." But he says it in a voice that sounds like, "God, you were so awful back then." To raise your consciousness, think about how it sounds telling someone with Down Syndrome who's improved in math, "You're a hell of a lot smarter than you used to be." It sounds like, "God, you were so stupid back then." 
5. ...Being expected to understand how everyone feels but then being told I shouldn't be expected for people to understand me. I'm supposed to shrug and go, "Okay, no problem" and, again, smile like this. Recently, my brother said of this, something like, "Yes, it's unfair, but you know why that is." 
6. ...Being expected to repress every little thing that comes naturally to me, whether it's my choice of discussion topic, my opinions, my sense of humor, or anything else. Sometimes I do this and then everything goes well, but it's exhausting. The dam breaks eventually, the holes in my mask form, and then I get lectured on how I need to learn to do A, B, and C, and not to do X, Y, and Z.
7. …Hearing sentences that start with, "You need to learn…" or "You need to work on"...
8. …Knowing that the stories I've related on most, if not all, of my blog posts are told from the point of view of an unreliable narrator and that I am missing one crucial element. My brother and one of my older friends have both told me that when I tell a story they know that if they ask somebody else, they'll have a story that's diametrically opposed to mine. My brother also recently said that I frequently have a very skewed version of situations, often with catastrophic results. 
9. …Of people asking me what I do for a living when I'm constantly in between blue-collar jobs, despite having a Master's Degree.
10. …Of the fact that most people have one or two skeletons in their closet when I have a whole fucking graveyard.
11. …Of being observed. I've been observed one way or another since I was a little kid, and by the time I was eleven I was pretty aware of it. It still goes on today. I'm sick of being observed, evaluated, gossiped about, told on, etc. I'm also sick of people like my brother telling me that nobody owes me answers when I ask exactly what happened that got people upset enough to tell on me, or what they said about me. It's easy to say that nobody owes you answers when this sort of thing rarely happens to you.
12. …Of people like my brother telling me that part of being adult is learning to repress my emotions. The problem is when I do that it only delays the inevitable outburst, which only makes things worse. My brother doesn't see whatever outbursts I have as an end result of repressing and repressing and repressing. He sees it as me giving into some emotional whim. Dad has the same opinion. Part of the problem is that, as I've said before, leaving a situation to cool down and prevent such things is seen as immaturity. 
13. …Of my pain being dismissed. If the Monster starts fucking my brain and I feel overwhelming emotions which I express, Dad tells me things like that I'm just trying to get attention and that I need to grow up. The irony? For years Dad understood me a lot better than Mom. And actually, there are still aspects of me that he understands better than Mom. But the deep psychological turmoil? Mom seems to understand it better (although this is a fairly recent development), perhaps because she has students who write in their journals about cutting themselves or being suicidal (no, I've never done/been either). I think only in the past few years have students come out about this sort of thing to teachers. They probably cut as much then as they do now but were shit-scared to talk about it, even in journals.
14. …Of having to think before I open my mouth or send an email or ask somebody something.
15. …Of having to expect that something will go horribly wrong, even if the situation I'm in seems wonderful at first.
16. …Of being told I'm not trying and that I need to try harder.
17. ...Of when something does go wrong, getting an entire fucking list of things that I did wrong, some of those things which still don't even seem wrong. When most people are told they've done something wrong, it's one thing, not a whole fucking list.
18. …Of never being allowed to be 100% right. Ever. 
19. …Of being told that I'm aggressive, too intense, and that I make people uncomfortable. Sometimes people don't even have a tangible explanation for these things when I ask for ones.
20. …Of feeling like I'm in a SIMS game. For those of you who don't know the SIMS, it's a simulation game where you take people, put them in houses, and let them develop relationships, get jobs, etc. A popular thing to do-- which my friends and I did in college-- is to "fuck with" the characters. We would build them a pool, let them jump in, and take the ladder away so they can't get out. Or we'd put them in a room with no door. Sometimes I feel like I am a character in that game and some higher being is fucking with me, watching me stumble through life.

In fact, I sometimes feel like the Universe is trying to put me in my place.

New York City- An Aspie's Paradise

If anybody were to ask me about the perfect place for a person with Asperger's Syndrome to live, my answer would be very simple: New York City. 

Why New York City?, you ask. Isn't it too crowded and overwhelming for people with sensory issues? Yes, but not everybody with Asperger's Syndrome has those issues. In fact, a good portion of them-- including me-- don't. And just to clarify, for many of us (me, at any rate) our discomfort with crowds is not about simply being around large numbers of people, but expecting to interact with them, all at the same time. For as long as I can remember, people have told me that I'm great in one-on-one or small group situations, but not so great in large group situations, such as parties. In fact, at parties, I usually befriend one or two people and go off in a corner with them to talk. Or if I need some break time, I just sit in the corner and draw. Asking someone with Asperger's Syndrome to enjoy large social groups is like asking a Catholic nun to be John F. Kennedy. 

But enough of that tangent, on with my endorsement of New York City as an Aspie's paradise. I lived in New York City for 13 1/2 years and for me it was incredibly easy to to forget that I had a condition that many regard as a disability (someone I met online who moved there from Maine for about a year made the same comment). Why? The answer is simple, I think. New York City is as diverse a city as you can get. There are all kinds of people who live there. I don't mean people of different ethnic backgrounds or even people from different religious affiliations (though there are those too). There are people with such a wide variety of temperaments and personalities, much more than I've seen anywhere else. I live in Boston now (long story), and while it's diverse enough that I feel comfortable, it's not quite the same as New York. Hell, a ride on the subways in each city will give you the idea of what I'm talking about.

You go to the F line in Brooklyn, for example. You wait in a small line to get through the turn style during rush hour. Someone can't find their Metrocard, and the person behind them butts in front of them. Typical New York impatience, but that's okay Everyone is used to it. You get on the train, heading for Manhattan. Five minutes in, someone gets on and starts screaming about Jesus and end times. A few minutes later, someone else begs for money. At the first stop in Manhattan, a group of guys gets on and does a wild performance for money, complete with back flips. Later, a man comes in dressed as a clown and does the nail-in-the-nose bit, also for money. As all these colorful people continue to board the train, you look around at everyone riding the subway. Some are trying to read and can't concentrate with all the noise. They roll their eyes. Others have a good laugh. Others still are ambivalent. In terms of the panhandler, many feel sorry for him and give him money. Trips on the New York City subway are never dull. And did I mention that the people who are riding the subway also have a variety of temperaments? Of course! Otherwise there wouldn't be such a wide variety of reactions!

We all know the stereotype, too, of there being a ton of crazy people in New York City. That said, I think it's also easier for the average person there to put things into perspective. Whereas a quirky behavior by someone with Asperger's might be viewed as "weird" or "scary" elsewhere, it might simply be viewed as "quirky" or even just part of the patchwork of personalities in New York City. With so many people acting unusual, it's just a lot easier to see the difference between "quirky" and "crazy". Plus, there are a lot of organizations that make it easier to find and make friends. There is the GLBTQIA center on 23rd Street, for example. How about the Asperger's support groups? Or groups for atheists? New York is also a place where I met a lot of polyamorous people (I'm not inclined that way, but my point is that New York is just very accepting of that kind of openness). And New York Public Library even hosts what's called an Anti-Prom, a prom for GLBTQIA teens. I suspect that New York might be the only major American city whose library would host such an event (except for San Francisco and, possibly, Chicago). You know all the stories about libraries being blackmailed by the religious right.

As for Boston? Well, there aren't lines for the subways, and in the six months that I've been here I saw a total of one solicitor and one "crazy person" on the trains. There's just not the daily exposure to oddness that there is in New York. Again, I think Boston is pretty accepting but I don't think in the same way that New York is. I don't know if, for example, the library would host an openly GLBTQIA prom. It just isn't nearly as diverse and I think Boston has somewhat more of a religious hold. But again, let's put this in perspective. Last year I lived in a small rural town in Maine for about five months. I hated it. It was homogenous-- lots of white, Christian people. Very, very few Jews, let alone those with any other religious background. And as for atheists? I'm sure they were in the closet along with the gays who live there. In fact, to meet interesting people I had to drive to Portland-- 75 miles each way. Everybody who was my age in the town in which I lived was married and had 2.5 kids. At one point, I posted on my Facebook status, "I miss NYC so much it hurts." It did hurt. I did not feel welcome, and I felt like many people thought there was something wrong with me. I did not feel that way in New York at all. As I said, in Boston I feel welcome, but let's just say that it's slightly easier for me to remember that I have Asperger's Syndrome, something many people regard as a disability.

So fellow Aspies, go to New York. It truly is an amazing city.