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. 

Things That People Didn't Get (or "And Fuck You for Saying So")

Note: As always, names changed to protect peoples' privacy.

Whew, it's been a while since my last post! Well, we're three months into social distancing, and a lot has changed. I'm now working at home, and my company just decided that this will be a permanent thing. Not thrilled about it, as I don't like being stuck home all day. I'd at least hoped that once things improved (even if in a couple years) we would be back in the office... but anyway... it is what it is.

Recently I've been thinking about things about me that people just didn't get when I was a kid, in that dark age known as the '90s. I've also been thinking about how people who barely knew me felt entitled to make objective pronouncements about certain experiences I had because, hey, I was the ultimate unreliable narrator, right (and yes, I'm being profoundly sarcastic)? I keep wishing I could go back in time and correct these people who made these comments and pronouncements and then conclude by telling them, "And fuck you for saying so."

Here are a few gems from my childhood:

1. Between the ages of 11 and 14, I went to a therapist who had no idea what autism was. Well, to be fair, in the '90s nobody knew about it. So instead of just being honest and saying he had no idea what was going on, at our last appointment he gave me an index card on which he'd hand written a "diagnosis": "Difficulty picking up on social cues and adjusting to new situations."
Okay, first of all, these are symptoms, not a diagnosis. Having difficulty picking up on social cues is, of course, a hallmark of autism. But back then an autism diagnosis wasn't even on the table. As for "adjusting to new situations"? That too is a sign of autism, but it's one I never had. I don't know where this assessment came from. Christ, even when I was a kid my parents commented that I was good at trying new things. And contrary to the stereotype of the autistic kid who gets upset when their routine is disrupted, nope, never an issue for me. And I would've been thrilled at the idea of going to a new school-- specifically, a small, private school-- because I was being emotionally abused by my peers.
And at the time of Dr. Bonehead's "diagnosis", I was getting ready to go to overnight camp for the first time. And guess whose idea it was? Mine. My parents didn't even suggest it. I had aged out of my day camp and decided to go to Camp Negev because my brother had gone there and loved it. So as far as having "difficulty... adjusting to new situations"? No, I don't. I never did. 

 And fuck you for saying so.

Backstory for the next 3 items:

I went to Camp Negev for 2 wonderful summers, in 1995 and 1996. 1995 was difficult in the beginning because after years of emotional abuse at school I was a bit guarded and on edge. I wasn't homesick, I wasn't upset that my routine had changed, or anything else that people reading this who are familiar with autism stereotypes are probably thinking about. No. It was because I was terrified that I was going to be emotionally abused again. Fortunately, my counselor, Jonas, reached out to help me become more relaxed, and he was a great friend and mentor for a few years. If not for him, I wouldn't have begged to stay second session, let alone come back in 1996.

In 1997, I went on a summer trip to Israel, one associated with Camp Negev. There, I developed an obsessive crush on Chuck, one of my counselors. I had a really difficult time because this obsession disrupted my summer (obsessive crushes are very common for people on the autism spectrum). My mind was all over the map, my mood swung at the slightest provocation, and my behaviors were erratic. I spent the year in sober reflection, but the damage had been done. I came back to Camp Negev in 1998 for the C.I.T. program, but they wouldn't let  me work with kids until second session because of "concerns" based on my Israel trip evaluation.

Fellow C.I.T.s commented that they'd seen significant growth in me and thought that I wasn't given enough credit. I, like other C.I.T.s, noticed that a lot of counselors were more concerned about smoking pot and engaging in the fraternity culture of the staff at Camp Negev than being good counselors. There was an alarming lack of responsibility when it came to the kids. I picked up a lot of the slack but, like many people on the spectrum, wasn't given credit for it. As is also textbook for people on the spectrum, an honest mistake-- such as saying, "Oh shit!" when not realizing that an eight-year-old kid is standing behind me-- was seen as a major infraction. Meanwhile, leaving kids alone in their cabins so they could go to the lounge and smoke weed was perfectly acceptable. The stress caused by the injustice eventually took its toll. I had two meltdowns during that summer. It was a significant improvement from the Israel trip, but these meltdowns proved to be the nail in the coffin for a future as a counselor at Camp Negev.

2. At camp when my counselors broke the news to me that I wasn't going to be able to work with kids because of their "concerns", my counselor, David, told me, "You're going to have to prove that you can change." No, it wasn't, "These are things that you have to work on", but rather "you need to change" because, hey, who I am at my core is wrong, right? This was just one of many times all summer when he was short, rude, and nasty to me. Telling someone that they need to change instead of working on some things is a really cruel, callous thing to say.

And fuck you for saying so. 

3. A couple months after camp, I wanted to apply for the gap-year Israel trip. Unfortunately, with my application I received a cover letter that essentially told me that they had "reservations". One of the reservations was that they thought I wouldn't be able to work in groups and that the "unfamiliar settings" would be a problem for me. I called the central office and asked for my C.I.T. evaluation. As I predicted, it cited inconsequential things that I did wrong and commented, "Could not be dealt with on a level that was appropriate for the C.I.T. program."

Um, wow? First of all, with all the pressure I was under that summer, I would like to see anybody not blow up at some point. Second, there is very little doubt in my mind that David wrote the evaluation without the help of my other counselor,  a wonderful person who had a more nuanced view of the summer. And why the hell was there this "unfamiliar situations" thing thrown in again? Once again, going to Camp Negev was my idea. Going to Israel was my idea. And I wanted to go back to Israel for the gap year program. A friendly reminder, I have never had issues with being in "unfamiliar settings".

And fuck you for saying so.

4. At a winter 1998 reunion, I confronted David about my evaluation. I talked about all the good things that I had done that I wasn't given credit for that summer and how lots of counselors got away with egregious inappropriateness.  David had the audacity to tell me that I "did not have a good summer", citing the two meltdowns (which, back then, people dismissed as childish temper tantrums instead of the end result of intense, complex emotions). Um, actually, yes I did have a good summer. Did I get frustrated at times? Yes. But life isn't black and white. I generally had a good time that summer. But oh, no, David told me that not only did I not have a good summer then, but that I didn't have a good summer in 1995 or 1996. David wasn't even my counselor those two years, so it wasn't like he had spent any time with me. This is just one of many times when someone in my childhood told me that how I felt about an experience I had was objectively wrong. Telling me that I didn't have a good summer when I felt that I did was a lousy, dismissive, invalidating thing to say.

And fuck you for saying so. 

5. When I was in 9th grade, I stormed out of class one day because my former friends-turned-enemies had been bullying me for the millionth time. A student teacher had been supervising the class, and as I walked through the hallway, I ran into my regular teacher. He took one look at me and shook his head. He said, "Every day with you it's the same thing. You can't handle your problems and you end up crying. Go to guidance."
I couldn't handle my problems? I was tired of being abused and I removed myself from the situation. How is that not handling my problems? And let's not forget the problems that the other kids had where they felt it was okay to bully me. Or was the fact that I was constantly bullied an indicator that I was the problem, not the other kids? 

When somebody is taking care of themselves after endless torment, that is not reflective of their inability to handle their problems.

And fuck you for saying so.

  

November 13, 1998

Names and places are changed to protect the privacy of those involved. 

I remember a lot of dates, some of them silly-- like the date I saw a particular movie for the first time-- and some of them significant-- like the date that a pet died. I also remember a lot of dates in which traumatic events happened, and I don't mean the types of traumatic events that everybody goes through, such as the death of a loved one. I'm talking about the type of trauma that seems to be unique to people with Asperger's Syndrome: social trauma.

Friday, November 13th, 1998, was such a date. And no, I'm not attributing significance to the fact that this particular event in question happened on Friday the 13th. I just happened to think about it this year because 2015's calendar corresponds to 1998's calendar. I remember this day so clearly, perhaps a little too clearly.

I recall that Dad drove me to school that morning. It was one of those days where I had do some presentation or other that included props that were too large and cumbersome to take on the school bus. As Dad drove up Route 611 toward Doylestown, he and I both looked out the window at the drive-in theater, one of the last in the country. It was about to be torn down to make way for a new strip mall.

"Tonight's the last night that it's going to be open," said Dad. "I think they're showing Grease."

"Can we go tonight?" I asked. I had no interest in Grease, but I had never been to a drive-in theater.

"Maybe," said Dad.

But it didn't happen. I couldn't even think about going to see a movie that night. I came home from school that day, checking the mailbox for the ten-millionth time to see if my application for the post-high-school-yearlong Israel trip, affiliated with Camp Negev, had arrived. Finally, I opened the mailbox to see a thick envelope. I knew that everybody else in my age group at camp had already received an application, but when I hadn't, I called the central office in New York City. I was already suspicious that somebody in authority had deliberately not sent me an application, but my parents also reminded me that the organization affiliated with Camp Negev was poorly managed: it could have been a simple oversight, and nothing more.

But a few minutes later I learned that this was not the case: I stepped inside the house and opened the envelope. On top of the application was a cover letter. (I actually used to have it memorized, and here I have reconstructed it to the best of my ability):

November 10^th, 1998

Dear Julie:

Thank you for your interest in the [name of Israel program] program. We know that you have been very involved in the movement and have spent many rewarding summers at Negev. You are welcome to apply, but [name of Israel program] is an intense and demanding program, and we as an executive committee felt it necessary to include a letter explaining our reservations.

[Name of Israel program] involves working in intense group situations in unfamiliar settings, and we are worried that such situations, particularly those involving group dynamics, could cause difficulty for you.

Best Wishes,

[names of executive staff]

I shouted, "What the fuck does that even mean?" even though there was nobody around to hear me. "How could they do this to me? How could they fucking do this to me?" My dog came into the room, and I crouched on the floor, crying. My dog, a yellow Lab, always showed great empathy. I pulled her to me, and she burrowed her head into my belly, which is something she often did when showing affection, particularly if I was upset. I held her and cried on her, but it wasn't enough. I wanted my friend, mentor, first crush, and camp counselor from my first year at camp (1995), Jonas, to be there and help me, to get me some answers, to do something. But he wasn't. He was in Israel with his girlfriend, supervising the current yearlong program.

It seemed that this nightmare would never end. I had two wonderful years at Camp Negev in 1995 and 1996. Then I went on the summer Israel trip in 1997 where I had an uncontrollable crush on a counselor, Chuck. It significantly interfered with my summer experience and, deeply embarrassed by it, I vowed it would never happen again. I recall that I tried reminding myself that experiencing a crush is merely a manifestation of the instinct to reproduce, and the drug-like state that it puts you in is merely that-- drug-like. I said to myself, "Remember, all you're experiencing is a chemical reaction."

A very powerful chemical reaction.

Summer 1998, back at Camp Negev for the CIT program, it happened again. I developed a crush on Omri, one of the Israeli counselors. Prepared for the possibility of falling for someone else, as much as I did not want it to happen, I set up very strict protocol, with assiduous controls  to prevent it from getting out of hand. But all it did was delay Omri figuring it out, getting freaked out about it, and my inevitable blowup toward the end of the summer. Overall, I had a fun summer (I tend to try to look on the positive side of things), but between the crush on Omri and the fact that I wasn't allowed to work with kids until second session, there was a lot of stress. The overall message that I received from the counselors was, "You made your bed, now sleep in it. Learn to deal with your problems." When I told this story to a therapist who I saw during my senior year of high school, he said, "How did they expect you to work under that kind of pressure?" A variety of therapists I saw over the years have expressed similar sentiments.

How in the world could I get anybody to understand that I was trying to control myself, that the outbursts that they saw were the end result of me denying my own emotions so that I would look "mature"? And what about the fact that I wasn't allowed to be irreverent at all, as it was "inappropriate", but other people at camp got away with appalling, egregious forms of inappropriateness, went on the yearlong Israel program and got hired as counselors year after year?

I heard the garage door open. Mom was home. I didn't know how I was going to tell her this. I had kept my mouth shut over the past few years about problems whenever possible because it always came back to her yelling at me for my acting like and dressing like I had a penis (sorry, even as a kid I felt that that's really what imploring me to "act/dress like a girl" came down to).

I overheard Mom talking with some teacher friend. I knew I wouldn't be able to handle myself in front of them, so before they could get through the door I went upstairs to check my email and see if anybody was on AOL Instant Messenger. No emails from Jonas, no camp friends or my friend from Philadelphia, Jenna, on AIM. But an hour passed, and Mom's friend was still there. There they were, downstairs, shooting the shit because they were normal people who took their social lives for granted. Just overhearing them made me want to put my fist through something.

Finally, when I calmed down somewhat, I went downstairs. I really shouldn't have: in my state of mind, trying to once again contain my rage, I had to go through the whole, "This is my daughter, Julie, Julie this is my friend [name here]"- "Hi, Julie, nice to meet you. Where do you go to school?" - etc. social niceties ritual. Reluctantly, I sat down and watched Mom and Mrs. Normal-Middle-Aged-Teacher eat cookies and drink tea and do all these Normal things as I tried to squash the surge of adrenaline that was inexorably building in me and hijacking my amygdala. Finally, Mom asked, "How was school?" It was fine. "Did your application come today?" I nodded. "Mom asked, 'Is everything OK?'" I leveled Mom a gaze that I hoped communicated, "Get that fucking woman out of here now." About fifteen minutes later, the woman left.

As soon as the woman was gone, Mom took one look at me and asked, "What's wrong?"

"This!" I exploded, shoving the cover letter in Mom's face.

Mom's face fell after she read the letter. She reached out to hug me, but I backed away. I was never big on hugs, and to me it always seemed like a pretentious way of addressing an issue. Years later, when I learned about Asperger's Syndrome, I found out that this is a very typical Aspie attitude. "No!" I snapped. "I don't want a hug! It's not going to help anything!"

"But it's good for you…" Mom pleaded.

I shook my head again. "Don't take it personally," I muttered. "It's just… the way I am." But how the hell could I have even explained that, not yet having the vocabulary for what I was?

Mom then suggested I call the central office and get an explanation. I don't know how I did it, but I managed to flip a switch in my head and calm down enough to make the phone call. I told the woman who answered who I was, and I asked her to do something I knew she wasn't allowed to do (but I hoped she would do anyway): I asked her to read me my CIT evaluation.

"Let's see…" said the woman. "It seems that you talked about… Satan… in front of the kids."

I was floored, but did my best to keep my tone level: "What? I had my dumb jokes with the other CITs, but I would never have made such jokes in front of the kids."

At least not on purpose. It was very possible I had made a Satan joke while not knowing a kid was standing behind me. And let's not forget that Omri had a similar sense of humor to me, and I guess because of his penis it was okay for him to make jokes about Satan, which he had apparently been doing at camp since the previous summer. Today I still have a photo of him dressed up as Satan with a "666" taped across his chest.

"What else?" I asked.

"Let's see… it says, 'Julie stomped out of the dining room when everyone else left and she thought they purposely left her behind. She thinks that people are out to get her.'"

"What? That did not happen!" I honestly had no idea what she was talking about. I racked my brain, trying to think of what the statement was referring to. But nothing came to mind. I'm sure my parents would have said, "Maybe you did it and just don't realize it." That was one of their typical responses to accusations leveled against me. It was so frustrating.

"Oh, maybe it was from another year," the woman said.

From another year? They wrote something that I had done during a previous year as if it had happened this year? I might have done it in 1995 when I first got there and truly was paranoid-- but years of having been bullied at school conditioned me that way. To toss in an incident from years past as if it had happened just months ago seemed like a sneaky, underhanded move to me.

"Could not be dealt with on a level that was appropriate for the CIT program."

Yes, another blanket statement. No elaboration.

"Did they say anything good?" I asked.

"Julie painted rocks for each of the bunks to have outside their doors."

"That's it?" I asked.

"Yeah," said the woman.

"What about my evaluation for the summer Israel trip?" I asked.

She searched but couldn't find it. Maybe it was for the best. Even today I'm not sure I want to know what was on it. I still cringe at some of the out-in-left-field stuff I said and did that summer.

I got off the phone and broke down again. I told Mom an abridged version of what the woman said. I didn't mention the Satan jokes-- I knew that she would bring up my lack of a penis for the joke's inappropriateness-- and I sure as hell wasn't going to tell her about the "stomping out of the dining room", which I didn't even remember doing, at least not that summer. I would have just gotten the standard lecture about how I can't blow up like that. So I simply told her that the woman told me that I constantly said and did inappropriate things in front of the kids.

I told Mom about the time that I came to one of the cabins during a movie night to find a little girl in there, crying, because the movie being shown (Mission Impossible) was rated PG-13 and she wasn't allowed to see PG-13 movies. I spent the evening with her playing cards so that she'd have something to do. That didn't make my evaluation. Nor did, "The younger kids really liked her and often followed her around." And what about the number of kids who felt that they could come to me if something was wrong, because they felt I would understand? Nope. Not newsworthy.

And then there was the time I was sitting in on a meeting with the staff of the age group I eventually was assigned to second session. Despite the fact that there were kids in the next room who could probably hear what we were saying, the staff were trash-talking an eleven-year-old kid with four-doses-of-Ritalin-per-day ADHD. They said that he was a hopeless case and that they didn't like him. I stood up for the kid and told the counselors that it wasn't right to make condemnations like that, especially about someone half their age. I explained that the kid's brain was hardwired differently and that he couldn't help a lot of what he did. The counselors' reaction? They laughed it off. Needless to say, standing up for the underdog didn't make it to my evaluation.

What about the counselors' evaluations? Did "Leaves kids alone in cabins" turn up on the evaluations of the many rogue counselors who did just that? Actually, leaving kids alone in cabins-- while going to the staff lounge to smoke pot-- was common practice. Nobody was ever called out for that. Nor was Omri called out for the time that he tossed a butcher knife into the sink when I was standing over it. Despite the fact that I had had a crush on him (he was very nice and helpful to me in the beginning of the summer when I wasn't allowed to work with kids), I had enough presence of mind to get in his face and firmly tell him never to do something like that again, that he could have hurt me. He had shrugged it off, saying he wouldn't have hit me, that his aim was excellent. And I'm sure it was. He was fresh out of the Israeli army. But it apparently didn't cross his mind that I could have suddenly moved into the path of the knife.

When I talked about these injustices with Dad later that evening, he put it succinctly: "Julie's getting crapped on for her little infringements while everyone else is getting away with murder."

At Mom's urging, I wrote a letter to the executive committee, telling them my side of the story. I finished a draft of a six-page-letter just before dinner. After dinner, I held up a piece of blank paper and said to my parents, "This is my reputation. Watch what happens: Telling a stupid joke that nobody gets." I ripped off a corner of the paper. "Accidentally saying a bad word in front of a kid who I don't even know is standing behind me." Off came another corner. "Having a bad day and not being able to keep a straight face." Rip. I silently added to myself, "Having crushes that I can't control." Silent rip. Aloud, I continued, "Being friends with the wrong people." Rip. And by the time I was done, there was no paper left.

And yes, someone on staff had once expressed concern about who I was friends with-- that the kids in my age group that I had the best relationships with were deemed "not mature enough". My two best friends had issues of their own and were a little unusual, which is probably why we understood each other. In retrospect, one girl that I was good friends with probably had Asperger's Syndrome-- she talked about horses almost constantly and missed tons of social cues that even I caught (and meanwhile she caught cues that I missed-- go figure). The other one-- a guy who had taken on a new name because he didn't like the one his parents had given him-- was bipolar, slightly effeminate, and got incredibly upset if people called him by his birth name and if somebody tried to take a picture of him (strangely enough, none of these quirks was seen as something to prevent him from working with kids). 

That was seventeen years ago, and times have changed drastically. I often think that the 1990s were to Aspies as what the 1950s were to gay people: the final darkness before dawn. We are now living in an more enlightened era, one in which teachers, counselors, etc. are being taught to understand different issues that kids may have.

This date that I remember so vividly is a perfect illustration of what kids with Asperger's often go through, especially if they grew up before Asperger's was even a known condition. It is practically textbook that neurotypical people can get away with outlandish behavior while people with Asperger's get called out for minor infractions. My shrink has told me she thinks it's because others notice that something is "off" about Aspies and they are thus more likely to notice such infractions, and be less likely to notice the good, altruistic things that they do.

The organization that my camp is a part of was run by people under twenty-five, as it's considered a "youth movement". People aged 21, 22, 23 were making huge decisions about me. Somebody must have eventually realized that people that age are too young and inexperienced to run a movement themselves, so today retired teachers are in charge of the youth leaders, as mentors of sorts. And today the camp is well-supervised, and drugs aren't tolerated on staff. If I were born in 1998 and gone to the CIT program in 2015 or 2016, had they thought I wasn't ready for kids they would have given me something constructive to do. I went back to Negev for an alumni day in 2011. I told one of the counselors my story and we talked about how much camp-- and the world-- has changed since the '90s. She said that there are sometimes kids who aren't ready to be CITs. But they are not shamed and shunned like I was. Instead, they are given something else constructive to do, such as helping write the blog or take photos for it, or working in the kitchen. Today, the staff wouldn't have given me the "You've made your bed, now sleep in it" attitude. Parents today of a kid receiving such treatment would be out for blood. As for the year-long Israel trip? Some accommodations would have likely been made.

Although I have since accepted my past, it's not so easy to put it behind me. I will never be 18 again and will never have the opportunity to spend a year abroad with other post-highschool kids. You only get one shot at life, and it often sucks when you realize that you were born in the wrong era, an era in which your own parents demand that you change, unwittingly implying that who you are at your core is wrong. Even today I still have dreams about this time in my life, and sometimes I just want to break something when I think about the opportunities my peers had but I didn't, all because of the way nature made me.

The Summer of 1998

The summer of 1998 doesn't seem like sixteen years ago. I'm not sure how long ago it seems, but it does not seem like sixteen years ago. I suppose what it comes down to was that it was a huge turning point in my life in terms of how I understood myself, the world, and in my place in it.

In June of 1998, just a few weeks before leaving for what (unknown to me) would be my final summer at Camp Negev, I made a huge discovery. Or, that is, I thought I did. After years of wondering what it was about me that was so different, wondering why I was always off in "my own world" and why I got obsessed with movies as well as any guy I had a crush on, I literally woke up one morning and thought to myself, "I have Obsessive-Compulsive Disorder." At the time, it was the closest I could come to labeling myself. Asperger's Syndrome was barely known at the time, and not having heard of it, OCD seemed like the only logical explanation. After a couple years, I realized that wasn't it (and, of course, I didn't know what it was). I compare my experience to that  of many transgender people, who have not yet heard the term "transgender", initially misidentifying themselves as gay. Kim Pearson, of Trans Youth Family Allies, calls this mislabeling "in the absence of reflection." The mother of an FTM transgender child, in an interview she talked about her son initially coming out as a lesbian "in the absence of reflection." In other words, her child looked out into the world and didn't see any examples of himself. He felt masculine and thought, "Masculine females are lesbians. That must be what I am." But that label never felt right to him. It was only when he heard the term "transgender" that everything finally began to make sense to him; he realized that he was actually a boy trapped in a girl's body. In my case, I looked out into the world, didn't see examples of myself, and thought, "People who get obsessed with things have OCD. That must be what I have." 

Although the OCD label proved to ultimately be wrong, the attempt at diagnosing myself that summer made me aware of something: some people are simply HARDWIRED DIFFERENTLY. This had never occurred to me before in my life. I realized, "If I'm hardwired differently and I know this, I can understand myself better." I came to Camp Negev that summer fully ready to not only embrace this understanding but also to be the best C.I.T. I could be-- at age 17, it was time for me to enter the C.I.T. program at camp. As it turned out, however, camp wasn't ready for me to take this next step. It turned out that the only reason that I got accepted to the program was because my counselor friend and mentor, Jonas, demanded that the camp accept me, which they were originally not going to do. I was allowed to be there, but they would not let me work with kids. For the first time, I realized, "They won't let me work with kids. It's not because I'm a malicious person or someone who would hurt the kids, but it's because I'm hardwired differently and they don't understand me." 

The other C.I.T.s, however, had known me already for three years and did understand me. Most of them thought the whole thing was unfair. The camp director told me I could work with kids second session (halfway through the summer) if I proved able to work with them. Do you sense a Catch-22 here? How could I possibly prove myself if they didn't want me near the kids? In fact, I recall constantly referencing Catch-22 throughout that summer. I was given kids second session, but apparently only after director and some other counselors were up until 3:00 A.M. discussing it. 

It was around this time that I began to be disillusioned with the social politics of Camp Negev and also see a greater hypocrisy in the world. I could have understood the concerns of the counselors and the director if most people on staff were responsible, caring counselors. But they weren't. Most of them simply worked at camp to be with their friends. I was appalled by some of their conduct. Many of them left their kids alone in the cabins and went off to the staff lounge to smoke weed. Some of them were nasty to the kids. I found this hypocritical at a camp that specifically preached social justice. In fact, during second session when I was at a staff meeting, a group of counselors was talking about an eleven-year-old kid with four-doses-of-Ritalin-per-day ADHD. They said that he was a horrible kid, that he was hopeless, and that he deliberately misbehaved. I did not take this lying down. I told the counselors that the kid was just that-- a kid. He was a kid with ADHD and, thinking of my own epiphany at the beginning of the summer, one who was hardwired differently. I tried to explain that to them but they just laughed at me. What made this even more disgusting was that the meeting was in a cabin cubby and some of the kids were in the next room. I warned the counselors that the kids might be listening. I know I would have at age eleven. Throughout the summer, many of these same counselors were very short with this kid who, as far as I could see, was well-meaning and not malicious. I remember thinking, "I hope when it's his turn to be a C.I.T. in 2004 he doesn't have to go through what I'm going through" (fortunately, years later I learned that he got into the C.I.T. program with no trouble).

From that summer I also took away another lesson that still resonates: It's not what your intentions are, or even what your actions are. It's about how well you cover up any mistakes that you make. Let's use the metaphor of getting caught with your pants down. Socially savvy people get caught not just with their pants down, but peeing or pooping on the floor, masturbating, you name it. They laugh, wipe their hands off, and pull up their pants. No big deal. As someone with Asperger's, when my metaphorical pants fell down (accidentally, of course) at camp, I could not pull them back up with the kind of finesse that the others could. To them, it looked like I committed a serious infraction. This is metaphor of course, but in terms of what actually happened? It was okay for these counselors to go off and smoke weed instead of watching the kids, or to browbeat a kid with ADHD because that was a socially acceptable thing to do. But if I tripped and fell and reflexively said, "Oh, shit!" when a kid was within earshot? Forget it. The whole universe collapsed on itself and within an hour everyone at camp knew and I was read as an unstable person who shouldn't be near kids. Never mind that these kids really liked me. I recall one fellow C.I.T. commenting that she was impressed by how much initiative I took in terms of spending time with the kids.

I should mention that since 1998, Camp Negev (not its real name) has changed drastically and the leadership is much better. It is no longer acceptable to leave the kids unattended or to smoke weed at the camp. As I understand it, it was in or around 2002 when some serious changes began to take place. I couldn't tell you exactly when it happened, because I could not get hired as a counselor. Further down the line I learned that there is Asperger's awareness training that takes place during orientation. However, since 1998 I have still seen this dynamic of "getting caught with one's pants down" in the real world. If anybody besides me gets caught screwing up, no big deal. It's an isolated incident. If I do? People read way too much into it and what my intentions are and what it means about me. In some cases, this type of misunderstanding has gotten me fired from jobs. 

And finally, one thing I began to notice in the summer of 1998 that sticks with me to this day is that when I think a situation is going downhill or that something is going on regarding me that I'm not aware of, I'm usually right. I may have had difficulty with social cues, but during the summer of 1998 I picked up on subtle cues that led me to correctly believe that people were scrutinizing me beyond the superficial (ie beyond "prove that you can work with kids"). I knew very clearly when they said one thing and all I was hearing was the tip of the iceberg. "We have some concerns." There was a time when I would have read that as, "We have some concerns." In fact, I think many people would. But ever since 1998, that word has been more loaded for me. "Concerns" means, "You are a problem and we are watching every move you make. And everything you do is subject to microscopic examination." Beyond this example, I can't articulate exactly what I mean. But I've seen it a number of times since then. I have had to learn to read more deeply into things than most people, because they don't have a history of social failure.

Despite everything, the summer of 1998 was overall a fun, memorable summer for me. But I still won't forget the frustration I felt in certain situations. And because of the lessons I took away from it that are still relevant, it does not seem as long ago as it should.