Is It Ableism? Part 11: Advocating for Your Needs

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

Part 6: Accommodation 

Part 7: Infantilization

Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

Part 9: Unintentional Gaslighting

Part 10: Challenging Comfort Zones

As always, names changed.

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

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

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

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

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

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

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

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

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

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

Growth vs. Change

As always, all names are pseudonyms...

Whoa, it's been 5 months since my last update! Well, a lot has been going on. For one thing, I'm almost finished the first draft of a novel that I hope to eventually publish. I am shooting for the end of the month (that is, in a week!) to have this draft finished. I've been trying on and off to write about this particular set of characters since the end of 1996, and it never got anywhere beyond a series of crappy and disjointed episodes. Well, this time it finally has, and I think I have a solid story in the works.

Now onto today's topic: growth vs. change. A couple weeks ago, I was talking on Zoom to Chuck, a counselor from my 1997 Israel trip with whom I reconnected last year. We have been chatting pretty regularly (usually once a month) since we reconnected at the beginning of the COVID-19 pandemic. I asked him if he remembered a particular time when the counselors led an "obscene sculpture contest" on the beach of a kibbutz we were staying at. He said he did, and I asked him whose idea it was. He admitted, "It might have been mine." Now that I think about it, I seem to recall that it might have been the idea of this other counselor who was a real smartass. But hardly the point. I laughed and said something like, "If only your kids knew. When you're a kid you like to think that your parents are these boring 'proper' people but you eventually learn that they did all the same ridiculous things that you did." Chuck laughed and said, "I really haven't changed since then. I'm still the same guy. It's just that now I'm a parent."

I was glad to hear somebody, anybody, say that. I reflexively cringe at phrases like, "People change" and "relationships change" especially when talking about someone who gets married and has kids. It's as if when someone gets married and has kids they're expected to be replaced by a pod person who has nothing to do with the person they once were. I associate these phrases with people having ditched me, sometimes inexplicably, including at least one time that involved ghosting. When I was a kid, my mom said "relationships change" and "people change" when I was in ninth grade and my "friends" caved into peer pressure and turned their backs on me. She said the same thing when I was 27 and Melanie, my best friend for more than half my life, ghosted me without explanation and didn't invite me to her wedding. Actually, she said it every single time a friendship came to a sudden end. These phrases carry horrible baggage for me, because the message I ended up getting was, "These people outgrew you. And their erratic actions were normal in response to someone like you."

Because the reality is that I haven't changed, and I told Chuck as much. And it's true: I still have the same interests as I did 23 1/2 years ago. I'm still irreverent. I'm still tomboyish/androgynous. Hell, I still think about a lot of things the same way as I did decades ago. Once, in 2015, I was telling someone a story about a conflict I had gotten into with my mother when I was in high school. Later, I found a school journal entry I had written right after the incident happened in 1998. The same points I made when defending my perspective in 2015 were all outlined in the journal entry, all with eerily similar wording. It didn't matter that 17 years had passed since the incident; I was still thinking about it in almost exactly the same way, right down to how I phrased things.

That isn't to say I haven't grown. I had a lot of issues in the summer of 1997 (and around then) but now they are largely under control. I had poor executive functioning in that I would say stupid things and regret them a nanosecond after they were out of my mouth (the "lacking a filter" issue common to people on the spectrum). I had extremely high anxiety and had a lot of meltdowns. Part of the issue was that back then autism was only used to describe people like the eponymous character in the 1988 film Rainman; I wasn't diagnosed until 2003. These issues have largely resolved with time, my growing understanding of the issues, and a whopping dose of SSRIs (which I've been on since 1999, the second half of my senior year of high school). I still have anxiety about certain things. I still have the occasional meltdown, but it's very rare and only in very specific circumstances. When it happens I am usually alone or dealing with my family. I have a good relationship with them, but the reality is we carry a lot of baggage and it sometimes comes to the surface and sets me off. As for the "filter", it usually does what it's supposed to, but I'm not perfect. I'd like to think that I've grown since then, and I believe I have.

"Oh, but see, isn't that change?" No, it isn't. Why? Because, my dear, what I described are adjustments, alterations to certain behaviors, not changes of who I am at my core. I'm still a smartass. I'm someone who will stand up on a chair in a restaurant and do the Pee-Wee dance when the song "Tequila" comes on. It's just that I'm more discriminating in terms of where I do these things; the "Tequila" incident was in a Manhattan restaurant with friends-- this sort of thing happens in public spaces in New York City quite a bit, so it's more acceptable there. I realize that I may be debating a semantic issue, but that doesn't mean that semantics are irrelevant. I'm older and wiser but, bottom line, I'm still me. 

So when should the word "change" be used instead of "growth"? I think when somebody's core persona changes. To use an extreme example, let's look at Frank Meeink, the former skinhead whose life loosely inspired the 1998 film, American History X. He was entrenched in an ideology that informed every aspect of his personality and his life. He even went to prison because he almost killed somebody. In prison, he found himself in sober reflection after interacting with black inmates on a regular basis. Today he is a changed man, and regularly educates people on the poison of racism and white supremacy.

I guess the word "change" also has more baggage with me, not just because of my mom's comments about people "changing" and relationships "changing", but also because over the years many people implored me to change, carrying the implication that there was something horribly defective about me: parents, teachers, peers, you name it. More then a few times when I had a social setback that was ultimately the result of an honest mistake and not rooted in maliciousness, someone said, "You could look at this as a positive opportunity to change."

"And my answer to that," to quote Bill Maher in one of his routines, "is fuck you."

And really, I was thinking about the issue of growth vs. change when I was in high school. My stance on it hasn't changed since then.

Why should it?