Tuesday, August 7, 2018

A Sad and Cautionary Tale that Makes Too Much Sense

Note: All names have been changed to protect individuals' privacy.

I've often written about Melanie, my ex-best friend who cut me off ten years ago when she didn't invite me to her wedding and stopped talking to me completely, all without explanation. If you're late to the party, you can find the first post about it here and the most recent post about it-- which also addresses its long-term effects on me-- here

In the second of those links, I tell the story about how an advertisement for a "Family Movie Night" featuring Moana was the catalyst for an elaborate and embittered fantasy that I concocted in my head: one of parents cheerfully taking their kids to a Disney movie, all the while having forgotten their identities and having excised their childfree friends. 

Indeed, this is the image I had harbored of Melanie and her husband and kids for the past ten years-- well, sort of. I had already known that Melanie's living situation was bizarre; I heard down the grapevine that she and her husband and kids were still living with her parents in their small northeast Philadelphia home. But aside from that, the otherwise pristine image of Melanie and her family remained in my mind... really, because of the way my mother initially reacted in 2008 when it had become clear that Melanie was no longer talking to me. My mother, who has since apologized profusely, had said these exact words: "Melanie is in a stage of her life where you're not invited." Mom went on about how this is what usually happens when people get married (years later I learned that she had told me that obvious lie because for some reason she thought it would make me feel better...uhhh??) and that I needed to learn to take hints. "She's trying to tell you something," my mother muttered (I could practically hear her facepalming at the other end of the line). "What?"  grunted. "She's not interested," my mother grunted back."

This conversation had made me feel inadequate-- even though I had known about Melanie's living situation and even that her mother was controlling (more on that later), I continued to imagine her in this mostly blissful, idyllic life: going to see a Disney movie in a public park on a warm summer night with her husband and kids; sitting on a bench at the playground with other mothers and talking about their kids' achievements while the kids played on the swings; having neighborhood potlucks with families that her family is close with... all the while having cast me off because I had been holding her down.

But I learned something interesting down the grapevine a couple weeks ago: Melanie has fibromyalgia. It isn't this information that shattered the "idyllic" image of Melanie's life (though it certainly didn't help). Instead, it was something else that I found out from an old mutual friend, Jenna, who I'd lost contact with around 2004 or 2005 and later reconnected with in 2015. Jenna hadn't been in contact with Melanie since about 2002 or so, and they (Jenna's preferred pronoun) also have fibromyalgia. I thought this was an interesting-- if sad-- coincidence. I told Jenna what I had found out, and they told me that they weren't interested in hearing about someone who had cut them off without explanation...

Wait, what?

Jenna said that they had thought they'd told me this a while ago. But they hadn't. Jenna then explained that around 2002 Melanie stopped returning Jenna's phone calls and emails and wouldn't even take their phone calls. What makes this even more interesting is that around 2002 or 2003 I had asked Melanie, "Do you still talk to Jenna?" I don't remember Melanie's exact words, but she said something that made it sound like she and Jenna had simply fallen out of contact. 

The fact that this has happened with at least two people who had once been close with Melanie is revealing. Why Melanie stayed in contact with me for a few years after severing contact with Jenna, I couldn't tell you. But I strongly suspect that this wasn't entirely Melanie's decision, and maybe not even hers at all. While I still think she's a jerk for doing what she did, I think her mother put her up to it, but perhaps not in an overt way. I think Melanie's mother gradually poisoned Melanie's mind against Jenna and me, and Melanie told herself that she simply "lost contact" with Jenna and possibly with me. But how would Melanie "not know" what really happened? Because, if my hypothesis is true, Melanie is also a victim in this-- a victim of her controlling mother. 

In other posts I've alluded to Melanie's mother being a control freak. She wasn't someone who I would call abusive, not by a long shot. However, she did shelter Melanie in bizarre ways, squashed her individuality, and did not give her any tools to function as an adult. Growing up, both of us complained about our mothers for similar reasons, often to the tune of, "I'm unconventional and my mom is trying to change that." In the case of my mother, she was trying to help me be happy but did it in a tragically misguided and ultimately hurtful way, which she now realizes and regrets. In Melanie's case, her happiness was not part of the equation: Her mother had an image in her mind of what Melanie should be like and was determined to realize it at all costs. How do I know that her motives were different? Well, technically I don't know that, but I look back at a lot of incidents from when we were kids that support this theory:

1. When Melanie was a teenager, she told me that she had recently been at a gathering in which she had been playing basketball with a group of boys. Her mother called out to Melanie and said, "Come sit with the women." Yes, Melanie. Stop getting exercise with kids your age and come over and sit with middle-aged people whose genitals look like yours (sorry, but that's what it comes down to). My mother would never have done that! In fact, she would have been happy that there were finally other kids who wanted to hang out with me -- regardless of what was in their pants -- and that I was getting exercise.

2. One time when I was seventeen and Melanie was eighteen, I said something about someone being a nutcase. Melanie told me, "Oh, I'm not allowed to say 'nutcase'. My mom says it's too sexual. She tells me to say 'nutball' instead." No, this absurdity was not a line out of Ralph Wiggum on The Simpsons

3. I wanted combat boots, and so my parents got them for me for my eighteenth birthday. Melanie wanted a pair too but her mother wouldn't get them for her because they were deemed too masculine. Never mind that plenty of teen girls in the '90s wore combat boots. 

4. When Melanie finally met the guy she ended up marrying, at age twenty-one, she had to sneak him up to her room to fool around because she wasn't allowed to have boys upstairs. That's right-- she was in her twenties and this rule was still there.

5. The very last time I saw Melanie was in the summer of 2005, when I was twenty-four and Melanie was twenty-five. We met at Six Flags Hurricane Harbor in New Jersey. Melanie had originally planned to come back to New York City with me (where I'd been living at the time), but her mother had already planned a "girls' day out" for the next day-- and told Melanie about it at the last minute. Additionally, her mother said she wanted Melanie home at 8:00. Yes, a twenty-five-year-old had a curfew

6. After Melanie had gotten engaged, her mother had started bugging her about grandchildren. I don't mean the typical, "Oh, are you going to have kids?" or even "When do you think you'll have kids?" It was relentless pressure to the tune of, "I wanna be a grandma!" Melanie's comments that she had wanted to wait a couple years after marriage before having kids apparently fell on deaf ears. 

You get the idea. Melanie remained under her mother's roof into adulthood. Even when she went to college, she commuted (I realize this could be a financial issue, but I'm not convinced of that in this case). She met a man, married him, and gave her mother the grandchildren that she'd demanded. Oh, sure, she and her family live with her parents, but otherwise she has found true happiness, right? And because she's married and has children, she must be a true adult, right?

No. I doubt that "true happiness" is the term to describe Melanie's adult life, and not because of the compromising condition of fibromyalgia either. The above examples strongly suggest that Melanie's mother not only groomed Melanie to grow up to be like her, but also that she probably expected Melanie to continue living in her childhood home through adulthood: At the time that Melanie's mother pressured Melanie about wanting grandchildren yesterday, Melanie had been working at Macy's for a mere $8 an hour.  

Melanie had complained about her mother trying to squash her unconventional personality over the years, but she stopped in her early twenties. In fact, when she first started dating the guy she ended up marrying, I saw a radical transformation: This rambunctious tomboy who'd been my best friend for years turned into a demure, 1950s woman who even said, "Oh, my sweetie knows about that" when I asked her what kind of computer she had. And no, I don't think this change was for her husband-to-be; I met the guy and I liked him, and I find it difficult to imagine him trying to make a woman into someone passive. Rather, I think Melanie did this for her mother. I think the message Melanie's mother had given Melanie was subtle but clear: She could either conform to her mother's expectations and they could have a good relationship, or she could tell her mother to fuck off and they'd have no relationship. One or the other. No compromise. Melanie did not want to lose her relationship with her mother, so the choice was very clear. Part of the choice involved cutting off any friends that her mother deemed "weird". I personally think her mother's issue with me was that she thought I was going to do something inappropriate at the wedding and also be a bad influence on the eventual grandchildren. She couldn't have me ruining the 1950s-white-picket-fence-wholesome image she was trying to create. She probably would have seen Jenna as a similar threat to that image.

Maybe you believe I'm overthinking this. I realize I very well might be. I could be wrong about a few things; I could be wrong about everything. I get that this is all speculation But despite my mother's initial comments ten years ago, you cannot seriously tell me that Melanie is an adult just because she is married and she has children. She has never left her parents' house, and I don't think it's for financial considerations either; her husband is a computer programmer. She is probably still under her mother's control and likely has adopted her mother's sociopolitical views simply because she hasn't had much exposure to anything else. She lives in Philadelphia, but it might as well be rural Kansas.

What makes my hypothesis, if true, even sadder is this: My mom believes that Melanie is on the autism spectrum. I'm not convinced that she is, but I think it's possible. I initially rejected that suggestion for a couple reasons: 1) People on the autism spectrum don't tend to be swayed by peer pressure, and 2) Melanie called me out on inappropriate behaviors a number of times when we were teenagers, and 3) Melanie had a lot of friends in high school.

My mother, who is a retired teacher, made me reconsider. She pointed out that while a number of her autistic students are very independent, there are many others who are just like their parents, but in a very superficial way that doesn't seem to reflect the child's true self. In fact, Tony Attwood, the kingpin of Asperger's experts, has pointed out that many autistic girls in particular mimic their peers or parents. They see that these people are socially successful and believe that in order to have friends and a happy life that they have to imitate them. The sad thing is that many of them, when they do this, end up repressing their true selves. In adulthood this catches up to them and leads to a major identity crisis. 

If this profile of autism does indeed describe Melanie, then it could be that she learned how to superficially mimic her peers in order to make a lot of friends in high school. It could be that she also commented on my behaviors simply because she saw that I didn't act like her peers, and yet her comments may have lacked any real insight. Or it could be simply that her mother told her to call me out on these things. It wouldn't surprise me at all. In fact, if I remember correctly, when Melanie related the story about her mother telling her to say "nutball" instead of "nutcase" because the latter was "too sexual", there wasn't a hint of irony in her voice. She said it matter-of-factly and with a straight face. It also makes me wonder: Did Melanie have kids because she honestly and sincerely wanted to, or did she just think she wanted to because it was what her mother and society at large expected of her? 

Melanie was a talented visual artist and singer. Even though the arts are not usually marketable skills, Melanie could perhaps pursued freelance work (at least prior to the fibromyalgia diagnosis, which I understand was very recent). At the very least, she and her husband could have moved out; her husband is a computer programmer and there are many affordable, nice apartments in the suburbs of Philadelphia. She could have found some other type of work and done her art on the side. But the last time I saw her, she was no longer drawing and I don't think she was singing either. Melanie had so much potential, but I think her mother crushed her.

Ultimately, I have a very different perception of what exactly happened between Melanie and me. While I do believe Melanie needs to take responsibility for what she did to Jenna and me-- she is an adult, after all-- I realize that it's likely that she is also a victim. It is indeed sad.

Parents of Asperger's girls, I'm watching you.

Wednesday, June 20, 2018

Somebody that I Used to Know (You Didn't Have to Cut Me Off)

            The Facebook events page boasted “Family Movie Night: Moana” in the Boston Commons.
Immediately, a vivid image formed in my head: Jen and Chris, a young mother and father in their mid-thirties, are leading their two children, aged five and seven, through Boston’s downtown park. Jen is holding one hand of each of her children. Chris is carrying two folding chairs for himself and his wife and two sleeping bags for the children. Jen is also carrying something—a third child, due in two months.
The five-year-old, Emma, carries her Moana doll. Dangling by the arm, the doll’s dress beginning to tear at the seams from hours of play with Emma and her best friend, Olivia, who also has a Moana doll. They’re long-lost twin sisters, was the compromise the two girls had agreed upon, as neither could be bothered to play the part of another character. The seven-year-old, Liam, is wearing his Maui T-shirt, Maui’s trademark words “You’re welcome!” splayed across the front, with Maui himself flashing his mischievous grin. Liam is carrying a toy of his own, in this case a plastic version Maui’s magic fishhook, which flashes lights and makes sounds when he swings it. Liam and his best friend, Noah, love to take turns pretending to be Maui and playing tricks on the neighborhood kids.
Family Movie Night will be a fun-filled experience for the children. Emma will love watching her favorite Disney Princess learn to sail and navigate the world, and Liam will crack up at Maui’s antics, such as when he pees in the ocean while Moana’s hand is dipped in the water.
Chris and Jen aren’t thinking about whether or not they will enjoy the movie: This outing is for their kids, and this movie is for kids. Tomorrow, Chris and Jen are going to meet with their neighbors, another married couple with young children. These parents will talk about how Ava has taken her first steps, and how Logan will be starting pre-school at the end of the summer. Then, the two families will meet yet another set of parents and their young children for lunch at Margarita’s in Waltham for a birthday lunch: their little boy, Elijah, is turning six tomorrow. And he is starting first grade in September.
            After lunch, they will go to the playground. The six parents will sit and talk about their children while said kids, all the best of friends, play together. They are children after, all, and childhood is a time when friendship exists without any significant barriers. Chris and Jen, however, are very selective as to who they allow in their social circle: They don’t have any friends who do not have children. In fact, when they got married, they severed contact with all their single friends. It was not a formal “parting of ways”; they simply stopped answering emails and phone calls from them, hoping that they would eventually get the hint. In fact, they didn’t invite them to the wedding or even accept their friend requests on Facebook. They kept their married friends around, assuming all of them would eventually have children. But when one couple remained childless after ten years, Chris and Jen excised them as well.  We’re in a different stage of our lives, they rationalized. We’ve outgrown these other people. If they don’t have children, then we have nothing in common with them.
            The Facebook page that advertised the Moana movie night was dated last summer, but I only saw the event page a couple months ago while searching to see if there was a showing of Moana in Boston: I hadn’t seen the movie in theaters, and I was hoping to see it on a “big screen” of some sort, perhaps with a friend. It had become one of my favorite movies after I first saw it last year, so of course I had to collect some of the merchandise: I have two Maui figures, one Moana figure, and Maui and Moana rag dolls; my laptop is covered with Moana stickers that came from the children’s picture books that I had bought (mostly for the superb illustrations). It turns out that in the first week of August, there will be a showing of Moana on Revere Beach. I will most certainly go, possibly alone, but one of my New York friends, who also loves that movie and who I’ve been needling to visit me, is going to see if she come that weekend.
If my friend and I go to this movie, no doubt we will be the anomaly among an audience of mostly young, isolated parents and their children, carrying Moana dolls and Maui’s magic fishhook. The kids in attendance are in the process of forming their identities, but little do they know that it is a temporary thing. Their parents have long ago left their own identities behind: they are no longer artists, writers, dancers, musicians, nerds, jocks, or any semblance of the personas that they had assumed while growing up. They are Parents, full stop. As they eventually learned, childhood isn’t a real thing; it’s not even a dress rehearsal for adult life. It’s a fake world created by the parents for the kids until they are old enough to marry and start a family. Life does not become real until you are married with kids and recreating the fake world for the next generation to inhabit for a couple decades. Those who never figure this out and don’t put away childish things have failed a major life test.
While I only came up with the details of the story just now as I wrote this, the general idea sprouted the moment I saw the ad for Family Movie Night: Isolated parents who had long ago seemingly stepped off a spaceship on another planet with exclusive membership, a holier-than-thou society where any adult who wasn’t married with children (or with the intention of having children) was an unperson, lightyears behind on an apparently linear, unidirectional trajectory of life and beneath them in every way. Why in the world did reading an ad for a showing of Moana trigger this vivid image in my head? Because I had been in a very dark place: My friend, Ryan, had gotten into a serious relationship and I hadn’t heard from him in months. He was blatantly ignoring my Facebook messages, and I kept thinking that it was due to of something like what I’ve just described: that he had “moved on” because he was at a stage in life that I have no way of knowing if I will ever enter.
A few nights ago, Ryan and I saw each other for the first time since January. We met for dinner and had a long talk about everything that had happened. It turned out that a message that I had sent Ryan in April, after we had briefly gotten back in touch, regarding concerns about the dynamics of our relationship was something that he had not been in an appropriate state of mind to address, as he had been overwhelmed by other things in his life. He also said that he had been realizing some things about himself that he didn’t want to face and that my message was yet another example being brought to his attention.
Ryan had meant to get back to me but the longer he put it off… the longer he put it off until ultimately it would’ve been too little too late, in his mind. He compared it to someone in debt who kept putting off paying bills until finally cutting his losses and declaring bankruptcy. Ryan had absolutely no idea how hurtful these actions were until one day when I messaged him with the direct question, “Are we still friends?”. He certainly didn’t realize how they made me second-guess myself and the way I’m hardwired and the way I live my life, feeling as though I’m a child: I’m demisexual (Google it), I don’t date, and I’ve never been in a relationship.  He realizes now that his behavior was hurtful and has since apologized. The two of us agreed to meet halfway on how we communicate; if Ryan doesn’t respond to messages right away, I’ll be patient, and in turn Ryan will acknowledge my messages but let me know if he’s too busy to talk or hang out.
Sure, you might say, people isolate themselves for a few months in the beginning of a relationship, but then when things calm down a bit, their friendships return to normal. Unfortunately, I did not have that kind of luxury to make that assumption about Ryan’s lack of communication, and for the few months that he and I had been out of touch, I was racking my brain trying to figure out why this was happening. I was also convinced that I would never see or even talk to him again. Because I have a history of friends ghosting me—such as in 2008, when Melanie, my best friend of sixteen years did not invite me to her wedding and completely cut me off  —my reflexive reaction is to assume that I have done something to make the other person angry, uncomfortable, or otherwise feel that the only possible way to handle the situation is to terminate all contact with me.
The situation with Melanie was very traumatic, and between that and Ryan’s lack of responsiveness, seeing that advertisement for Family Movie Night led to the above story being planted in my head. I have had similar embittered reactions when seeing this commercial and this commercial, both of which depict parenthood in an idyllic manner. Ever since the estrangement from Melanie, I reflexively think that in general I cannot—that is, I literally am not allowed—to be friends with people in relationships, let alone be friends with people who are married and have kids. If I met the right guy, sure, I probably would get married, or at least cohabitate. But as I’m demisexual, it’s not something that’s on my radar. I can literally count on my fingers the number of people I’ve been attracted to, and obviously my being attracted to that person is only half the equation: the other person has to reciprocate. Given that I experience attraction so infrequently to begin with, the chances of a mutual interest are very low.  And I absolutely do not want to have kids (I’d have to change my mind very quickly anyway, as I’m 37).
Why should my relative lack of interest in romance and sex and my decision not to have kids preclude me from being friends with people in serious relationships? When Melanie got married and cut me off, my mother told me that married couples usually cut off their single friends (she doesn’t recall putting it in those extreme terms, but I remember vividly that she did). She also said that when you get married it is a different stage of your life. Same as when you have kids. Although she has since retracted her statements excusing Melanie’s actions and has apologized profusely, it is difficult for me to forget. My vivid memory is both a blessing and a curse. Besides, I have heard that same mantra over and over again about “different stages” from a number of people. Some people have also called me “naïve”—a term that implies social immaturity—due to my inexperience in romantic and sexual relationships. Wouldn’t the more neutral “inexperienced” do? Apparently not, because the idea that experience with romance, sex, and the desire to have children make you an adult instead of one type of adult is so ingrained in our society. It’s as if life is a linear, unidirectional pathway with milestones that are objectively on a higher tier than others. Additionally, the idea that you can either be a married adult with children or be a proverbial child yourself is a false dichotomy, yet many people fail to realize that.
The notion that relationships, marriage, and children are “stages” is one that makes me cringe. In fact, recently, literally hours before Ryan responded to my “Are we still friends?” message, I was telling somebody at work about what was going on. I sought his advice because he was talking to me about his girlfriend and some of their shared friends. My coworker started with the damned “stages” mantra. I said, “No. Puberty is a stage. Old age is a stage. These are all stages that everybody goes through as long as they live long enough.” My coworker interrupted, saying, “Everybody also falls in love.” I said, “No. No they don’t. Just listen. I’ve never been in a relationship. It’s hard to say if I ever will be. It’s naïve to say that everybody falls in love.” I then explained to him what it means to be demisexual and also said, “And as for having kids? That’s not in my future.” My coworker has one hand that has only two digits. I wish I would thought to ask him how he would feel if someone had said to him, “Everybody has ten fingers.” It is frustrating when there are things that most people take for granted that are just not part of your own life.
As for Ryan, when we had our talk, I told him about the fears and second-guessing that plagued my mind during the months that we hadn’t spoken. Was he cutting me off?, I had wondered. If so, was it because I had never been in a relationship and that made me a child in his eyes? That was a notion that I had seriously entertained during those few months. I then confessed that I felt like an overgrown child. For example, when I’m at Target I might see parents buying Moana figures for their five-year-olds, and I’m there at age 37 buying these toys for myself: I haven’t left the fake world that adults create for children before boarding the spaceship and heading to the planet where real life begins.
Ryan commented that the idea that my sexuality, relationship status, and parent status should have any impact on who I can be friends with is ridiculous. He also said that he too sometimes feels like an overgrown child. For one thing, he likes things like action figures, children’s cartoons, and video games. Although already married once, he hasn’t had children yet and members of his family are pressuring him to remarry and have children. He told me that the fact that he hasn’t done this yet makes him feel like people see him as immature. I was floored when Ryan told me this. He’s 32 years old, and in 2018 being someone who wants to have kids and to have not had them yet at age 32 is increasingly common; my cousin had her first and only child just two months before her 39th birthday. But Ryan’s family is from the south and, presumably, they have a more conservative outlook on life: Get married and have children by a certain age, because that’s what you’re supposed to do. But why? How does it affect his family members? These aren’t parents begging for grandchildren—his parents are deceased—and his two siblings already have children. So it’s unlikely a matter of pressure to continue the family name or to quell “baby fever” (not that anybody should pressure family to do this anyway) and more likely a question of what one has to do to be an adult.  It’s attitudes like this that fuel the cynical and embittered scenario like the one I opened this blog with.
Another scenario that kept coming into my mind over the course of the few months that Ryan and I hadn’t been speaking—partially because friends and family who I’d been talking to about this put it there—was that Ryan’s girlfriend perhaps had told Ryan she didn’t want him having opposite-sex friends. Initially, I dismissed the idea as ridiculous: In 2018? In Boston? And how threatening to their relationship would I, an androgynous, autistic, almost-asexual person, be? But since so many people suggested it, I truly began to believe it. What then? Should I stop making friends with heterosexual guys in case they get into relationships, because then they have to cut off their opposite-sex friends? And what if one partner of an opposite-sex relationship is bisexual? No friends for that person because everyone is a potential sex partners? Should I join the polyamorous community where there would likely be no politics involving the sex of the person you’re friends with? Ryan told me that this was another red herring: his girlfriend trusted him. She not only knows who I am but also knows that Ryan has several friends who are women. It’s not an issue.
What it ultimately came down to was that my message to Ryan about my concerns about our friendship was poorly-timed, and Ryan’s judgment of how to handle it was reckless. It had nothing to do with my sexuality, my lifestyle, Ryan’s girlfriend being territorial, or Ryan feeling like he was in a “different stage of his life” and that I was immature compared to him. While I know logically that anybody who writes me off as a friend because of my being single/childless childfree/anything else that precludes societal-expected adulthood is an ignorant person who is not worth my time, it’s difficult for me to put that into practice. The idea of somebody cutting off their single friends once they marry is cliché for a reason. After hearing stories like this so many times, having had it happen to me once and my fearing that it had happened to me yet again, eventually I begin to ask if I’m the one with the problem rather than conclude that a remarkable number of people are ignorant, inconsiderate, and limited.
I want to emphasize that when I talk about what happened with Melanie, my best friend of sixteen years, and what I thought was happening with Ryan, I am not talking about a natural, gradual drifting apart. I am talking about the sudden and deliberate excision of the other person from their life once they marry, an exclusionary action so severe that the former friends are not even connected on social media: Ten years ago, Melanie rejected my friend request on the then-popular MySpace (to my knowledge she is not on Facebook). I realize that when your friends marry and have children, of course you are not going to see them as frequently and that you have to adjust certain dynamics of the relationship. When my cousin Melinda had her child, I fully expected that whenever I hang out with Melinda her son will be there, at least until he is old enough to be alone more of the time. So I not only have adapted, but I have made an effort to establish a relationship with this child. He is only 3 years old, and I don’t think he’s seen me enough to recognize me. But when I do see him, I read to him and play with him, and not just because he is family either. I would adapt in this way even if a non-relative had a child.
Now, if only society would adapt a bit more.

Sunday, April 22, 2018

Please Stop Using the Word "Challenges": An Open Letter

Dear Well-Meaning but Misguided Professional Allies,

Could you please stop using the word "challenges" when describing the struggles, turmoil, and often pure hell that autistic people go through? It's really, really irritating. When you write articles about how it's "challenging" for autistic kids to make and keep friends or "challenging" for autistic adults to find and keep jobs, you are missing the mark. I know you mean well, but when you use such words I strongly suspect that you don't appreciate the reality of living on the autism spectrum. I also suspect that it is your way of being "sensitive" and "politically correct", that you are afraid of offending us by using more direct and honest terms. But all it does is undermine and minimize our realities and ultimately fail to educate the general population. You are using euphemisms, which I absolutely HATE.

Why do I hate euphemisms? Ultimately, euphemisms are an inaccurate representation of the reality that they are attempting to address. It also has an undertone of denial. For example, the euphemism "passed away". Okay, I can understand using "passed away" when a 90-year-old dies in their sleep, but using "passed away" when someone is shot and killed with an AR-15 in a school shooting or falls off a cliff while hiking the Grand Canyon, is abhorrent. The school shooting victim was MURDERED. The person who fell off the cliff in the Grand Canyon DIED. This over-the-top, euphemistic language perpetuates a culture that is in denial about death, but that's another discussion altogether.

Now that you have a solid example of why I don't like euphemisms, let's talk about "challenges" and why its usage when describing autistic people's lives is intellectually dishonest. First of all, a "challenge" describes something positive. Doing a puzzle is a challenge. Taking an advanced-placement calculus class is a challenge. Hell, even climbing a mountain is a challenge. It is something the person is choosing to do to improve their brains, physical strength, and so forth-- and they can back out at any time if the task proves too difficult.

Saying that an autistic person is "challenged" when describing the tortuous attempts to accomplish the necessary day-to-day tasks for social and financial survival that the neurotypical world takes for granted is a completely inaccurate assessment of what many of us go through. Nobody would dare tell a person in a wheelchair who falls down a flight of stairs because they weren't provided a wheelchair ramp that entering the building was "challenging" for them. Likewise, you shouldn't describe a bullied autistic child's repeated failures to make and keep friends "challenging". And an autistic adult with a Master's degree who is only able to obtain and keep $12/hour data entry jobs is not someone who finds obtaining employment "challenging". In these two examples, these people are often tormented and tortured by these realities, which are often because the neurotypical world at large does not understand autism and in many cases can't be bothered to do so. Even in 2018, autistic kids are often still told that they bring the bullying upon themselves, and autistic adults who can't find rewarding work are often told that they're "not trying hard enough." And let's not forget how often people tell us that we are "making excuses".

These days I generally make friends with ease (though my close friends are few), and after fourteen years I finally have a rewarding job as a graphic artist. On May 30th, it'll have been a year since I've had this job. And yes, I said fourteen YEARS. Not months, YEARS. I spent those years going back to school-- I went back TWICE-- only to hit the same brick walls as I had after finishing my undergraduate degree in 2003 as an autistic person in a post-9/11 New York City economy. In one case, after going back to school for library science, I was fired from two children's librarian jobs due to lack of understanding among my employers and the parents. In the second case, I took a web development immersive, only to discover that I have non-verbal learning disability which makes things like programming overwhelmingly difficult for me to learn (so much for the stereotype that autistic people are programming geniuses). I wouldn't dream of describing these fourteen years as "challenging". I'd describe them as difficult, frustrating, torturous, and sometimes pure hell. If you think that "challenging" is the appropriate word to describe these experiences, then you simply don't get it.

I am not trying to enforce prescriptive language-- I hate that as well. What I am asking you to do is to raise your consciousness. Think about what words you are using and why. Don't patronize us. And when in doubt, ASK.



Saturday, March 24, 2018

I Am Moana!

Jeez, it's been another long time since I've posted one of these. Once again, I'm sorry! Updates: My job is going well. I also had my surgery to coil and stent my aneurysm last September, and I'm going for a follow-up angiogram in about a month to make sure everything is healing properly.

As you can see, the title of the blog posts alludes to the name of a song in the Disney movie Moana and, of course, the movie Moana itself. The other day, I had a really interesting-- and frustrating-- thread about this movie. It started when I posted this:

One of my favorite things about "Moana" is that it's a buddies movie with a guy and a girl. Yes, believe it or not, a guy and a girl over the age of 12 can hang out and even be alone on a boat for several weeks without falling in love (despite the jokes that [friend's name here] and I make about it). All too many movies that have a woman as a main character either portray her as someone who is an "accessory" to the man or, if she's the absolute main character, she has to fall in love with a man because, vagina. It's almost always obligatory when a woman is an absolute main character. Maui and Moana become best friends. They hug, they high five (yeah yeah, that wasn't around thousands of years ago, but it's Disney; what do you want?), they act silly in a way that's non-flirtatious.And I don't know anything about ancient Polynesian cultures, but I have heard that aboriginal cultures in general were often more egalitarian than the Christian-dominated cultures that followed in the centuries to come. So why not?

One guy, I'll just call him "G", wrote this in response:

G: So, actually you say that desire and bodily needs are rooted in christianity?I highly doubt that...
Me: No that is absolutely not what I said.
G: You've praised a movie for the lack of lust in it and then wrote, abo [sic] cultures like Moana's were more egalitarian than Christian culture. That is what you said.But let's flip the story, why is it a bad thing that men and women have basic needs and those needs are being addressed? The Heroine also eats and goes to the toilet sometimes.
Well, for the love part, I tend to agree with you, she doesn't have to fall in love to fulfill her needs, but I guess I'd prefer this romantic way rather than just showing her random copulating with strangers.
Well, for the love part, I tend to agree with you, she doesn't have to fall in love to fulfill her needs, but I guess I'd prefer this romantic way rather than just showing her random copulating with strangers.
Me: No you are missing the point. Movies with men as main characters have them sometimes falling in love, sometimes not. If the main character is a woman, she has to fall in love. In other words, it’s woman [sic] being defined in relation to men.

The egalitarian stuff I was talking about was in reference to that they went on an adventure together that a woman wouldn’t typically go on, at least not in Christian dominated cultures over the past several centuries

The egalitarian stuff I was talking about was in reference to that they went on an adventure together that a woman wouldn’t typically go on, at least not in Christian dominated cultures over the past several centuries

What is frustrating is how often I have had this type of conversation with people and how often they misunderstand it. It's been going on since childhood. I thought my opening post was clear, but as you can see I had to clarify it. And the very idea that a movie not involving a man needing to get laid or a woman needing a man to love her (sadly, the formula for many romance movies is just that) is a good thing seems to be alien to so many people. I might as well be saying, "Wow, finally, a movie where somebody doesn't breath oxygen!" 

There are a lot of things that I appreciate about Moana, and the fact that they didn't chuck in a love story is one of them, for the reasons I stated above. I am sure the only reasons that the writers didn't put in a love story are: 
a) because it was irrelevant to the plot and 
b) because in today's world of Internet predators the idea of a 16-year-old falling in love with an ageless man (who is presented as if he is in his mid-twenties, perhaps) would just be inappropriate (although maybe there was a little bit of a feminist consciousness when the story was written). 

But let's look at it for a moment as if this were a real scenario. Why isn't Moana falling in love with Maui? I mean, they have been alone together on that boat for weeks! Surely some primal instinct would take over, right? Why didn't she fall in love? I don't know. Maybe she's gay. Maybe she's asexual. Maybe her sexuality hasn't awoken yet.

Or maybe Moana IS heterosexual and, gasp, there was just no sexual tension between her and Maui, and why is really not important.Yes, believe it or not, this is possible. I'm heterosexual but I have a lot of friends who are guys and the sexual tension between us is zero. We might high-five or hug (depending on the person and my relationship with them) but that's as far as it will go or ever will go, even if in the snowball's chance in hell that we end up stranded on a boat together for several weeks. This may be because I'm demisexual (Google it) but I think there are a lot of heterosexual opposite-sex friends who don't encounter sexual tension when they spend time together. I remember being frustrated as a kid when my mom would say that in every interaction between heterosexual people of the opposite sex, there is always going to be some level of sexual tension. No. That's not true. For some people, yes, it absolutely is true. Some guys see an attractive woman and their mind doesn't even register it. Others immediately think, "Oh she's attractive." Others still within a nanosecond of seeing an attractive woman think, "I want to fuck her." And this is just the cisgender man side. Cisgender women? Same deal. What about gay cisgender men and gay cisgender women? Probably even more complicated when we are talking about transgender and gender non-binary people.

I guess what frustrates me the most is when I praise Moana and other movies for having guys and girls being close, non-sexual friends, other people are hearing me say that sex is bad. Or they think I have a personal sexual problem. But what I really am praising is the visibility of other types of relationships, that sex isn't the be-all-and-end-all of human interaction. I'm praising the visibility of someone who might be gay. Or asexual. Or not sure yet. Or just praising the idea that heterosexual people can spend time alone without wanting to do each other. Is it really that complicated? 

While I do think the whole idea of women being defined in relation to men is still a pervasive problem in film, I also think it is happening less and less. Moana is one film that is finally breaking that mold. Moreover, I think in terms of film characters she is a good role model for young girls. She is strong and determined and independent. And as for Maui? Yeah, he teaches Moana wayfinding, but he also learns a few things from Moana. How often do you see men learning from women in movies?

Sunday, September 17, 2017


Jeez, it's been a while since I've posted, and when I wrote my last post I was in a very dark place and feeling utterly hopeless.

I'm happy to say that things have gotten better: At the end of May, I got a full-time job at an autism-friendly workplace in which I can use my drawing and writing talents. Despite my lack of professional experience in this area, my boss hired me based on raw talent, knowing that my lack of professional experience was likely Asperger's-related and not due to laziness and other factors people are often too quick to assume.

Ironically, I found this job through the school in which I had been taking the web development class. I haven't touched coding since I've gotten the job, however. After all, at long last I have a job doing work based on where my talents actually lie-- writing and drawing-- than in the "practical" areas that society says I ought to have.

While I enjoyed the environment at the school where I took the web development class, the learning process caused me a lot of stress and anxiety; it has since been confirmed that I have nonverbal learning disability, which I think might account for the difficulties I had in learning the material. While I might pick it up coding again eventually, right now I'm glad to be able to focus on my art and writing. I've been going to open drawing sessions, I've taken watercolor painting classes, and in November I'll be going to a one-day writing workshop.

I'm not completely financially independent-- the company I work for is a startup and does not currently offer medical benefits. My insurance is $234 a month (I opted for this more expensive insurance because of a procedure I have to have in a couple days, which will be explained below), and my parents foot the bill for that and help a little bit with the rent. And whenever I take a class, they pay for it. But it's still a far cry from where I was before, 100% dependent on them and feeling completely hopeless about the future.

Another update: In May I learned about something that initially scared me but have since learned is manageable: I have a cerebral aneurysm in my left internal carotid artery. It is 3-4mm in diameter, which is considered small. Since my blood pressure is excellent and because I don't smoke, it is currently not life-threatening. However, this could change as I get older. My neurosurgeon offered (rather than actively recommending, as all surgery comes with some risk) to treat it. I decided to go ahead with it because while right now the chance of eruption is next to zero, in twenty years we're talking about numbers like 10%-- a bit of a game of Russian Roulette. Right now, with the minimal risk, I was also glad to find out that I could even continue exercising-- running, lifting weights, swimming laps-- so long as I didn't do something extreme like run a marathon. Since I was given the green light for exercising, and since summer is my favorite season, I decided to go in for surgery at the end of the summer-- this Wednesday, September 20th, at Massachusetts General Hospital.

So what will they do? Shave my head, drill into my skull, and clip the aneurysm? No. Clipping is a process that is usually done on aneurysms on the surface of the brain. Mine is in my left internal carotid artery, and drilling into my head to access the aneurysm would be pretty risky. The surgeons are going to do a different procedure, one that is often employed for people with aneurysms that are deeper inside the head. They're going to insert a catheter in my femoral artery at the groin, run the catheter all the way up to my head, and deposit some coils inside the aneurysm sac. Since it's a wide-necked aneurysm, they will also put a stent inside the artery to hold the coils in place. The coils induce blood clotting and ultimately seal off the aneurysm opening to prevent blood from getting in. And I get to leave the hospital the next day. Pretty low-key surgery for what is technically brain surgery (sort of; the aneurysm isn't IN my brain, just near it).

Then, my parents will drive me to Pennsylvania, where I grew up and where they continue to live, so I can recover. I'm really excited because some friends that I went to film school with in New York City and who now live in Los Angeles are, ironically, moving to my hometown in Pennsylvania. They are there right now looking for a house, so I'll get to see them while they're there. They're probably going to be moved by Christmas, and they might start coming to my family's Thanksgiving and Christmas gatherings every year. So I'm pretty stoked about that.

However, the reptilian part of my brain is worried about complications during the surgery-- such as the catheter popping the aneurysm-- and I'm a bit nervous about going under general anesthesia because I don't know what it feels like. The idea of having control taken away from me-- "Here, we're going to stick a needle in your arm and you're going to go into medically-induced coma and there's nothing you can do about it"-- freaks me out. But the logical part of my brain thinks that the surgery will be uneventful, and recovery will be a snap. When I had an angiogram (which involves injecting dye through a catheter inserted into the groin, going all the way up to the head), the doctors gave me a sedative that had practically no effect on me. They said that even for a young person, I was unusually awake and alert during the procedure. They explained that it means my liver processes drugs very efficiently. So my guess is I won't be one of those people who is super fatigued after surgery.

Well, that's it for today's post. Sorry it's been so long, but as you can see it's been a hectic year!