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.