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.

Yet Another Post on How We Conflate Conformity and Maturity (in Girls)

Names changed to protect the privacy... you know the drill...

I was really upset when I opened the present that Mrs. Z. got me for my fourteenth birthday.

Inside the neatly-wrapped box was an ornate, silver brush-and-comb set. As I stared incredulously at the present, I wondered how Mrs. Z. would think that this is something that I would like. In fact, she knew that this was something I would vehemently dislike. Mrs. Z. was a friend of my mother's; she and Mom once taught at the same school together. I often called Mrs. Z. on the phone to tell her about ridiculous things that my mother did, such as accidentally driving away from Pizza Hut with a salad sitting on the roof of the car. In addition to telling Mrs. Z. stories like this, I also complained to her about my mother, specifically about Mom trying to make me more feminine in dress and behavior, traditionally-gendered expectations that I felt deeply uncomfortable with. I would often comment that my mother was stuck in the 1950s. Mrs. Z. would act like she agreed with me and would laugh with me about it.

By the time my fourteenth birthday rolled around, I was still complaining to Mrs. Z about my mother. So why in the world would she buy this gift for me? She knew I strongly identified as a tomboy, and she knew that I had a variety of interests: drawing and animation, acting, woodworking, ceramics, books, writing, animals, and computers... And yet she spent $15.00 -- about $25 today, after adjusting for inflation-- on something she knew I wouldn't like.  I wasn't upset merely because she got me something I disliked. This wasn't like the time when I was seven or eight and a babysitter, who barely knew me, saw the dolls that my mother had put in my room, assumed that I loved them, and got me a new doll as a present. Mrs. Z. was someone who explicitly knew what my likes and dislikes were. I was even a little insulted by this present, but more than anything, what I was upset about was what this present seemed to represent: a strong statement that Mrs. Z. felt that my mother was right, and that it was time for me to "outgrow" that "tomboy stage" and become a "young woman". The implication was clearly that being a tomboy was considered a sign of immaturity. 

When I was visiting my parents this past Christmas, Mom said, "Look what I found" and handed me the box with the brush and comb. I muttered, "Oh, God," and we both laughed. Just like a quarter of a century ago, I was incredulous that Mrs. Z. thought I would like this, and I said so to my mother. Mom commented, "But she saw that you were growing up and thought that you might change." Change? Change from what? Change to what? That I might outgrow my interests in drawing and animation, acting, woodworking, ceramics, books, writing, animals, and computers in favor of becoming a "mature young lady" who spends copious amounts of time in front of the mirror? Yes, I know that this is a false dichotomy, but when someone spends money on something that they know you won't like, it speaks volumes about what their expectations are.

Recently, I was telling this story to my friend, Meg, whom I've known for about twenty years. She commented that she would not have liked getting an ornate brush and comb set for her fourteenth birthday, and we both felt that it was common sense that many girls wouldn't either. She agreed with my observations about the standards set for girls, and even commented that girls-- whether they are tomboys or not-- seem to be expected to give up their childhood interests in favor of fashion, makeup, and attracting boys. She also said that there seems to be an expectation that girls put everyone else before themselves, whereas boys don't have that expectation. She also told me that on the first day of seventh grade, a number of friends seemed to have drastically changed over the summer. These friends were not even recognizable from their previous incarnations. Gone-- or at least deprioritized-- were their childhood interests, only to be replaced with constant talk about boys, clothes, and makeup. Meg suddenly had nothing in common with these girls, and their friendships were over. I saw a similar drastic change in one of my (very few) friends in the middle of eighth grade, and our friendship ended. 

Right now I can imagine many parents reading this saying, "Well, that's just peer pressure! Of course I wouldn't want my daughter to lose her childhood interests!" That may be true, but it seems people still expect girls to undergo a drastic change between childhood and adolescence that people don't expect for boys. If Caleb is still playing with Legos when he's thirteen, then so what? But if Emma is still playing with Legos-- or even playing with dolls-- when she's thirteen, then it's seen as immature. Additionally, there seems to be an expected rite-of-passage passed from mothers to daughters that emphasizes learning to look pretty. Yes, there are some fathers-- often homophobic fathers-- who relentlessly pressure their sons into sports even if the boy hates sports. But aside from them, there doesn't seem to be an equivalent between fathers and sons. In fact, sports are at least something a kid can be active in, that's good for their body and their brain, something that requires talent. It's not something they're expected to do to please society at large. 

The equivalent to getting me a brush-and-comb set for my fourteenth birthday might be getting a boy a set of weights so that he can work on building muscle to impress the girls. But even that, like sports, has a physiological benefit for the boy and involves developing a skillset. And I think the reason that there really isn't this equivalent in boys is because all of my aforementioned, gender-neutral interests would be considered "masculine enough" for all but the most homophobic fathers. Unless blatantly stereotypically feminine-- such as ballet-- it seems that interests, by default, are a boy thing. For girls, it has to be something explicitly stereotypically feminine to be considered a mark of a "mature young lady", as if feminine gender expression and interests make a girl more mature, just because it involves conformity. 

But the problem is, as I've said, that a lot of the things that girls are expected to do-- such as spending a lot of time on their hair and putting on makeup-- involve pleasing others. In fact, if Mrs. Z. had even gotten me a pair of ballet shoes instead of a brush and comb set, I would've felt differently. I would've been disappointed and perplexed, as I wasn't interested in ballet-- or any kind of dancing-- but I don't think I would've been insulted. Ballet at least is an active activity, a hobby, an interest, and something that involves talent. But when Mrs. Z. got me the brush-and-comb set, I was more than just insulted: I was utterly horrified. In short, this present was a big "fuck you" to me, and it spoke volumes about what people expected of me-- even people who I thought understood and supported me. If I didn't eventually conform to these expectations, then what would it mean? What would become of me?

It's 2020, and a different world than it was in 1994. I think the expectations of girls that I mentioned in this post are not nearly as narrow as they were twenty-five years ago. I think there has been a lot of positive and rapid change in that regard in the 21st century, particularly in the past ten years or so, but there is still definitely some work to do on this front. 

Notice that I didn't mention Asperger's Syndrome even once in this post. But I think that the connection to it is clear.