Everything’s (Not) Gonna Be Okay: A Kick in the Face

This blog post includes big spoilers and discussion of major ableism. If that makes you uncomfortable, here’s the tl;dr:

A family member of an autistic person does a comedy routine on how “difficult” the autistic person’s behavior was. And it’s not funny, it’s upsetting.

The show “Everything’s Gonna Be Okay” is supposed to be an autism-friendly show. They hire an autistic actress to play an autistic character. The character is a queer girl who gets a girlfriend. She doesn’t follow the stereotypes and feels like a real person. It’s enough to give an autistic viewer hope.

Until episode 10, when the burden narrative comes to smack us in the face.

Let’s talk about the comedy club scene

Episode 10 shows Matilda, a 17-year-old autistic girl, trying to do a practice run of independence to prepare for college in New York City. She tries desperately to learn to ride subways and buy food, despite clearly being overwhelmed. Her behavior becomes rigid and agitated: an obvious sign of stress. This trip is really hard for her. And then something happens in the final evening.

Her non-autistic 14-year-old sister Genevieve turns on her.

Genevieve secretly books a gig at a comedy club to do a standup routine about her sister.

Here is the summary:

  • As a kid, Matilda had “strange” behavior. She only ate orange foods, refused to stop wearing a turkey costume, and liked hearing the phrase “gobble gobble” (from herself or from others). The audience laughs.
  • The girls’ dad took them on an airplane for the first time. They were denied early boarding. Matilda, struggling to manage a totally unfamiliar situation with lots of noise and crowds, wanted her sister Genevieve to say “gobble gobble.”
  • Genevieve didn’t want to say it and she said “no,” upsetting Matilda. (She then went on about Matilda’s limited theory of mind at the time.) Then Matilda got distressed by takeoff and got sick. The audience cringes and laughs in sympathy to Genevieve.
  • Genevieve got mad because she wanted her life to be normal for once and her sister “put her in her place” by making things not normal.
  • Then Genevieve talks about how now Matilda can handle airplanes and got into a prestigious NYC college. I guess this part is supposed to be inspiring.

So let’s recap: in this story, Matilda is a little girl trying to cope with a new and overwhelming situation. She has handled crowds, loud noises, and new airport rules that don’t seem to make much sense. Now she is crammed in cramped seats in a strange place. A first airport trip is challenging for any small child, and Matilda is desperately trying to cope. And when the plane jerks and roars, poor Matilda gets sick.

And the story is about how weird she is and how she makes it hard for her sister. And how her sister resents her for not acting like she is OK when she is struggling.

Here is a list of some of my thoughts as I watched this:

  • “Thank goodness Matilda isn’t in the room and can’t hear this.”
  • “Matilda is clearly struggling in the story. Why are people laughing?”
  • “Why is it such a big deal if ‘weird’ things help her feel better? Why do we have to laugh at her?”
  • “Why on Earth did Genevieve just name the college Matilda got into? What if someone from Matilda’s college is in the audience?”
  • “Please let this not be the way my family thinks about me.”

I didn’t laugh at all. I wanted to cry.

Comparison: A story about my sister

“But you missed the point! Having a sibling with a disability is HARD! Genevieve has the right to tell her story!”

Never let it be said that I don’t know what it’s like to have a sibling with a major disability. I do. My sister has Down syndrome. She used to be nonspeaking. She had a ton of therapists coming to our house. (And several years ago, she got into a program that means we have therapists coming to the house again.)

I can tell funny stories about my sister. I can even tell stories about times when things weren’t great. But the way I tell those stories is very different.

I checked with Stella, and I have her permission to tell this one. Here is a story about why she was/is scared of animals.

When we were little, we would play with a family down the street who had a big dog. Don’t get me wrong: he was a good dog. Just a very large, very enthusiastic dog.

Now imagine, for a moment, that you are a toddler with Down syndrome. You don’t understand the world very well yet. And when you’re taken to a different house, this giant beast approaches you. You don’t know what it is. But it puts its enormous hairy paws on you, opens its mouth to reveal long sharp teeth, and begins tasting your face.

Naturally, you come to certain conclusions.

And Stella was a tiny child with a limited grasp of English, so no amount of adult reassurance could convince her that she was safe from the huge creature that knew what she tasted like. So whenever Stella saw an animal, she would climb the nearest trusted adult (usually Dad) crying “No eat! “No eat!”

These types of events leave impressions on people. And so, you may not be surprised if I tell you that animals (especially large or out-of-control ones) make my sister a little nervous.

I also have another story. It’s about the time my sister was chased by an overeager dog. I have decided that, because it was a very upsetting event for her, I will not be sharing the details on the internet. But I’ll tell you how I responded.

As the gleeful dog chased my terrified sister, I ran around too in case that would make it chase me instead, simultaneously shouting “No!” and “Sit!” in the hopes that something, anything would get the dog to leave her alone. Upon reflection, I’m sure these mixed signals were very confusing to the dog.

(Don’t worry: the dog’s owner ran over and stopped the dog, and my sister now knows to stand still and watch her feet if she wants an overexcited dog to leave her alone. My sister is also okay with me sharing this.)

Now, let’s talk about the way that I tell these stories:

  • I explain my sister’s point of view. Her emotions and behavior should make perfect sense to you.
  • If you’re laughing, it’s not because she’s “weird” or because you feel sorry for me. You’re empathizing with my sister and understanding the huge discrepancy between how a little kid views a situation and how an adult views it.
  • When I talk about the dog-chasing incident, I don’t talk about her fear being “annoying” or “hard” for me. I recognize that she is having a terrible experience and so of course I do anything to help.
    • I would never, EVER blame her for having a hard time. Never.
    • I understood it wasn’t about me. It was about her. I did whatever I could to try to help her feel safe. (The dog wasn’t aggressive, but she didn’t know that!)
    • And I’m not asking for pity or sympathy for “putting up with” her. Not ever. We are normal sisters. And when she is in crisis, I will do what I can to help, because I love her and that’s what sisters are supposed to do.
  • I got Stella’s permission. I read these stories out loud to her and she laughed a little. I asked if I should share or delete them. She said I could share them.
  • If I tell you “several weeks ago, my sister willingly went up to a dog and let it lick her hand,” I bet you’ll be proud of her. Because you know exactly how she has felt and what a big deal it was for her to make that choice.
    • Yes, it’s true! My sister did that! It was her decision! I wasn’t there, but she came home and told me about it, beaming with pride.
Drawing of how I imagine my sister Katie's first doggy kiss. Katie, hesitant and excited, allows a friendly dog to lick her hand.
I love her and I’m so proud.

My sister has a hard time sometimes. I don’t want you to feel bad for me because I am a bystander to her struggles. I want you to understand her and relate to her and recognize that she is doing her best in a world that can be challenging.

And if there’s anything we humans have in common, isn’t it that?

It’s not okay

I would never, ever talk about Stella the way Genevieve talks about her sister. Not ever.

I do get upset with Stella sometimes. (I mean, we’re sisters.) And sometimes my thoughts have frustrations about her. But I would never broadcast my biggest frustrations about my sister to a room full of strangers.

Stella is a person. Most people adore her (as they should), but some might judge her unfairly because of her disability. And I would never, ever do anything to contribute to people disliking or making fun of her. I would never ask for sympathy at her expense.

She’s an awesome sister and any sacrifice I choose to make for her will be worth it a thousand times. I would never want her to doubt that she is worth it.

But a lot of autistic people doubt whether they are worth it. Because it’s very popular to tell stories about how difficult and weird we are. How we make life worse for our parents and siblings. How it would be easier if we had never been born, or if we had died instead of been diagnosed.

I think of the scene when Matilda sits on the floor and cries, terrified of being a burden to the people she loves most. A common fear for autistics.

If she heard the way her sister talked at the club, it would rip her heart into tiny pieces. She would be shattered. Devastated. Because after she tried so hard all day, her worst fear would be confirmed in front of all those laughing people.

I haven’t liked Matilda very much since she was mean and controlling to her girlfriend. (Both she and her half-brother are incredibly inconsiderate of the people they date.) But I would never, ever wish that feeling on anyone.

And worst of all, I think of the autistics watching the show. I think of all the autistics, including those who are young or living with abusive people or battling suicidal thoughts. I think of how excited they must be to see a show that treats them like human beings instead of bizarre circus freaks that the normal people are saddled with.

And then I think of how they must feel, seeing Genevieve being “inspirational” by launching her performance career at her sister’s expense. Turns out Matilda was just another annoying burden after all.

Final thoughts

I don’t know if the show creators realized how this might feel to autistic viewers. The interviews suggested they had their hearts in the right place, and apparently they read from #ActuallyAutistic people instead of just non-autistics.

But if they thought this was OK, they clearly didn’t read enough.

This might be salvageable if the next episode dealt with Genevieve realizing that her actions were not okay and that she risked seriously hurting her sister. And if they added a trigger warning, since the scene is really not suitable for most autistic viewers in my opinion. (Especially considering the high rates of anxiety, depression, and suicidality.)

But I have doubts about that. Because this is popular culture. And autistic people’s feelings don’t matter nearly as much as the feelings of the people around us. Especially when they are complaining about us.

In this world, the story is that we are burdens whose feelings do not matter. And even the people around us, the people we love the most, are willing to believe it.

So unless the show addresses how awful that scene is, I don’t think I will be watching season 2. It hurts too much.

And I wish our dignity were no longer treated as expendable.

12 thoughts on “Everything’s (Not) Gonna Be Okay: A Kick in the Face

  1. I have only watched 2 episodes but I really enjoy the show and it makes me feel so happy. Now I am afraid of not being able to enjoy it. Am I a bad person if I still like it? I have a problem with things like this bc of past people telling me I am a bad person for liking something

    Liked by 1 person

    1. Of course not! You’re not a bad person for that.

      It’s only the last episode that was hurtful. The other episodes were pretty good, though I should mention that they involve mature themes.

      It’s your choice whether you want to skip the last episode or not. And you aren’t bad for enjoying a show that not everyone likes, especially a show that does such a good job for so many episodes.

      You might be bad if you enjoyed a Nazi propaganda show or some show that said that a certain class of people didn’t deserve respect. But enjoying a show with one hurtful episode doesn’t make you bad; most people enjoy shows that have bad episodes. You liking the show says nothing bad about your character.

      I liked all the episodes except the last one.

      Like

      1. Thanks for the kind reply! I need someone to talk sense into me sometimes >.< I hope you have recovered from the hurtful episode and are doing well! Thanks again for the reply, I really needed it ❤

        Liked by 1 person

        1. It sounded like you might need a reality check.

          Remember:
          * Good people can have different opinions about the same thing
          * Good people can do bad things by mistake; it’s part of being human
          * If you feel bad about doing a bad thing, and if you want to make it right, then you’re not a bad person (because bad people don’t feel bad about doing bad stuff)

          Feel free to save this list somewhere in case you need another reality check sometime. The brain-demons can get loud from time to time, and it’s good to have reminders about what’s true and what’s not true.

          Like

  2. I loved this show ever since it premiered. I was so hopeful that it would become the next television cult classic, because I thought there was a ton of raw potential to be found in it. I even recommended it to a few of my friends, and I tend to never recommend my media preferences for fear of seeming too excited; that’s how much I liked it! But then I began to notice the subtle mistakes it made, like the hints of disability inspiration porn in Matilda’s eulogy, her use of functioning labels in episode six, and, yes, that aforementioned scene during which Matilda was pretty mean to Drea, and other scenes during which both she and Drea made fun of their acquaintance Jeremy.

    I initially wrote them off. When I thought about the eulogy, I justified it with the idea that Matilda was just really aware of the ableism she faced and wanted to convey to the funeral guests how much faith he had in her even when doctors treated her like a tragedy. When it came to the functioning labels, I said to myself, “oh, Matilda was obviously frustrated and was jumping to rash decisions”—I even I began to recognize them that the average neurotypical viewer wouldn’t pick up on that implication and that the very need to explain it means that the show didn’t do an adequate job of portraying it. When she was cruel to Drea, I was honestly kind of shocked, considering how much of her character development was built around subverting the trope of autistic people lacking in empathy by making Matilda kind-hearted disposition a core personality trait, but I excused it with the justification that she was caught off guard by the scope of Drea’s invitation to prom and didn’t know how to react. Besides, I figured even if Matilda was just being cruel, none of the show’s characters, including ones that are meant to be portrayed as angels, so why should we have higher expectations for the autistic characters?

    Then this episode aired. I watched it live for the first time in at least a month because I was so excited. As much as I had tried to excuse the show’s most problematic actions as actually being insightful elements of the plot, even I couldn’t deny the tense feeling in my body when Genevieve standup routine came along. And, again, I tried to excuse it as being symbolic of Genevieve attempting to find herself in the wake of Matilda’s planned absence in the coming years. The feelings lingered, though, and after reading this post, I can’t help but admit that you’re right. Genevieve was blatantly making fun of her sister, no way around it. That becomes even more abundantly clear during one of the final scenes of the episode, during which Matilda confessed to Genevieve and Nicholas that she isn’t ready to live in New York on her own and wants to head home, and Genevieve looked absolutely crushed.

    I’m still going to be watching the show’s second season if it gets renewed. I want to see what else the show can accomplish, because over the past two months, I have laughed and was almost brought to tears during episodes three and five—during which Matilda confessed that she feels like a burden and falls apart at a party because she feels like she’ll never fit in, respectively, two emotions I have often experienced with the teary eyes and devastated heart that Kayla Cromer delivered in her performances. I truly did fall in love with the show, in spite of so many truly problematic elements. I loved seeing myself onscreen for what felt like the first time when Matilda and Drea finally got together, which I had been predicting since at least episode six! Besides even Matilda’s various adventures, I loved Genevieve’s arcs, and even though he could at times be horrendously self-centered and even arrogant, I thought Nicholas was hilarious at times! That bit in episode two during which he and Alex impersonated each other’s respective accents had me rewinding my recording of the episode just to watch that moment again and again!

    I do completely understand why this episode hurt you so much, though. I’m an only child, and as such, have never felt the specific pain of watching a sibling get bullied or teased. I’m sure it hit home for you in a completely different area than it did me. You definitely deserve to be disappointed with the show’s final episode; I clearly am, too, and everyone involved deserved a better ending than this.

    I know this comment is really lengthy. If you’ve made it this far, thank you so much! I appreciate the consideration. Your illustration of Matilda is so good, by the way!

    Liked by 1 person

    1. Thank you for sharing how you feel and what you’ve noticed. I like hearing other people’s thoughts and insights on things like this.

      I too had high hopes for the show, and felt a little uncomfortable for the same reasons you mentioned. I also didn’t get why Matilda used person-first language constantly, when apparently the main creator said he read a ton of autistics’ essays and thus you’d think he’d know the basics. Unless he was trying to portray her as not yet being connected to the Autistic community.

      I wasn’t even thinking of Stella, watching that comedy club scene, because I couldn’t possibly think of her the way Genevieve thinks of Matilda. It’s just foreign to me.

      I have a mean voice in my head that tells me that I’m a burden to my family. That my struggles cause pain for them. It hurt because it felt like the one show that seemed to understand me had sided with the mean voice after all. I try to be well-adjusted, but like Matilda, I’m still terrified that I make things worse for the people around me.

      My sister has a hard time on airplanes sometimes. If someone suggested to me that I was a victim of her fear somehow, I would stare at them like they had just grown a second nose on their face.

      To me, it hurt that it kicked me right where my insecurities were. I really hope it tries to be more respectful of Matilda and its autistic viewers in the future.

      And thanks for the compliment about my art! I have a lot of practice.

      Like

      1. Matilda’s use of person-first language did cause me to raise my eyebrows, but even though I knew it was a mistake, it didn’t really bother me as much as some of my other concerns did. Like you said, I did think there was a possibility that she was going to be portrayed as not yet connected to her community, especially since part of her character arc throughout this season has involved her attempting to shed her urges to assimilate into neurotypical expectations and seek out people who love her for exactly who she is—she does refer to herself specifically as “autistic” instead of someone who “has autism” in the last episode (“she was an autistic feminist like me!”). Besides, since it was made very clear in the first episode that Matilda has known she’s autistic since she was at least three years old, I suppose I sort of guessed that her experience with so much ignorant meddling could have caused her to internalize that language used to describe her.

        As much as I hate to admit it in retrospect, I think I really should have seen this unfortunate ending coming. Genevieve being… at odds with her sister has been a theme of the show going back to the pilot episode when Matilda expressed that she knew she wasn’t allowed to talk to Genevieve at school. Looking back, I can name countless examples of behavior like that, especially during episode seven, when Genevieve privately confessed to Nicholas that she knew one of the reasons why her friends came over to have a sleepover was that they were prepared to witness a “full-blown meltdown” if Matilda found out her prestigious college of choice didn’t accept her application.

        To be fair, I get why this is—Genevieve has consistently been portrayed as really angsty, and it does fit within her character arc of being caught up by peer pressure and insecurity, which I actually thought brought a fair bit of insight when it dealt with Tellulah’s schemes to take pills or send nudes. It does still hurt, though, for a lot of the reasons you listed. I’ve begun to grow past insecurities of being a burden to those I love, but I can relate to a lot of Matilda’s experiences, especially the ones Genevieve retold in her routine. I, too, had a shaky grasp on theory of mind when I was in elementary and middle school: for example, I often thought that people who ignored me and didn’t immediately respond to me just didn’t hear what I said, which led to a vicious cycle of me repeating phrases, aggravating the people around me who didn’t understand, and then causing them to bully and tease me behind my back—wounds that still leave a lingering ache to this day. I also thought that if I simply mimicked the behaviors of the well-liked, popular kids at school, and told the jokes they told that seemed to make everyone laugh (often times not even understanding what made them funny), I’d become likable as well. Of course, that didn’t actually work, and really only provided my peers with more ammunition to mock me. I still get upset when I feel isolated by my peers, because it takes me back to those days, and the thought of someone reiterating those memories as a punchline to a stand-up routine does scare me.

        Like I said, I don’t have siblings, but there are plenty of people in my life who are also autistic. With my vigilant ear and naturally defensive impulses, I see and hear a lot of misunderstandings and just plain cruelty towards those people I love, and it always causes me to see red. Whenever that happens, I always want to angrily yell exactly why the autistic person in question is acting in a way that someone thinks is so funny, but I know, that just like Genevieve, they’d only barely understand.

        I do have hope that the next season could have a reckoning with this show’s mistakes. A lot of autistic fans of the show haven’t pulled their punches in criticizing its mistakes—I saw a few fans sharing a collective “yikes” on Instagram in reaction to a clip of Matilda in episode six saying, “I’m high-functioning, this isn’t fair!”—and given Matilda’s justified anger towards Nicholas and Genevieve ignoring her agency, I don’t think it would be out-of-character for her to stand up for herself if she found out what Genevieve said about her during the routine. Given that Nicholas literally wondered, “I wonder what [Genevieve]’s saying in there” as he and Matilda waited for her set to end, I think that may have been a hint of foreshadowing an upcoming confrontation in season two, if the show gets renewed. All I can do is hope.

        Also, apparently the… clumsiness, shall we say, that this episode demonstrated wasn’t the only instance of the Freeform network building some bad habits of negligence as of late. I tuned in to an episode of ‘The Bold Type,’ the show that airs immediately after ‘Everything’s Gonna Be Okay,’ and I was underwhelmed. I knew that getting my first taste of the show through the ninth episode of the show’s fourth season probably wasn’t the best way to familiarize myself with it, so I looked through Autostraddle—a website by and for queer women—to see what their television review recap had to say about it, since I had noticed some regular reviews popping up in the past couple of weeks. Apparently I wasn’t alone in my ambivalence, since the episode’s reviewer called the show out on an only decent coverage of a serious issue, conversion therapy, which was especially pertinent after the previous episode displayed, and I quote, “some wild biphobia” towards a character that had recently come out as bisexual after previously only viewing her attraction as exclusive to women. Biphobia doesn’t really cut me as deeply as ableism towards autistic people, since I’ve read enough queer media to understand that biphobia is a ridiculous mindset, but you’d think a television network that’s trying so hard to market itself to millennials and Gen Z as a home for progressive and forward-thinking shows wouldn’t make such baffling mistakes.

        Liked by 1 person

        1. You mentioned some insights on things I didn’t notice myself. Thank you so much for sharing! You are a deep thinker with good ideas.

          I’m sorry to hear you struggled so much as a child. I wish your peers had treated you better. It sounds like things were difficult for you and I wish that adults had taken action to stop the bullying. No kid deserves that.

          You are a good friend, caring so much about them and wanting to defend them. Sometimes I think that people who have been mistreated can become the most compassionate people of all, choosing to protect others from the same abuse and harm they endured. That is what a truly good and admirable person does.

          Yes, it would be nice if Matilda stands up for herself and Genevieve realizes she was in the wrong. If I heard of that happening, I would consider seeing season 2.

          Biphobia is such an ugly thing. While I’m not bi myself, I hate seeing people treated unfairly in general, and I think it’s wrong. They need to talk about how inappropriate it was and also maybe have the characters apologize for whatever they said/did.

          Younger generations care about marginalized people. And not just face value, but for real. Until content creators take it seriously, things are going to fall flat.

          Like

          1. In defense of ‘The Bold Type,’ the biphobia I referenced wasn’t so much of a casual misstep or lack of tact, but what I guess was an attempt at providing “perspective” that fell flat. In short, after she had recently come to terms with her bisexuality, a co-worker who I assume is a lesbian (I could be wrong, though) was very rude to her. The co-worker’s poor conduct was later revealed to have been motivated by resentment that the bisexual character was able to come out with such relative ease in comparison to her process, which actually got her sent to conversation therapy, especially since she couldn’t suddenly date a man and have a straight-passing relationship. In theory, there could’ve been a more nuanced way to handle it, and the show at least attempted to rectify its missteps, but it left me feeling more ambivalent than anything. Still, though, I’m in a relatively secure place, and I can’t help but think back to your points in this article considering how such an episode could impact other viewers, especially young ones, who could see an episode like that and have all kinds of negative thoughts triggered.

            Thank you for the kind words. I have my regrets surrounding my early childhood, too, but it’s ultimately in the past, and I’m moving the best I can (with admittedly mixed results). Besides, I’ve read enough material from self-advocates to know that have been bullied is unfortunately the rule, not the exception. Statistically speaking, autistic kids are already about five times more likely to be bullied than their allistic peers, and the only reason that number isn’t higher is because so many kids get bullied as it is. I’ve learned that many others have been through a lot worse than I have, thanks in part to both luck and privilege on my end—I’m white and female (so I wouldn’t have been viewed as an aggressive type), I’ve been a fluent speaker throughout my life, I was viewed as intelligent enough to have my agency acknowledged (which was sort of a double-edged sword, since my mother’s attribution of my autistic traits as simply being symptomatic of being a “gifted kid” were what prevented from getting diagnosed for such a long time), and I at least came home to a mother who was sympathetic and tried to be reassuring, unlike a lot of people who grew up in the 80s or in decades prior whose parents would reprimand them and try to discipline them into so-called “normalcy.”

            I don’t have much else to say—you’d think so, given how much I’ve already written—but I want to thank you for having this discussion. I don’t really watch a lot of television as of late, since so much of the industry has moved towards streaming networks that I don’t have (Netflix, Hulu, and the like), so it was really refreshing to have a thoughtful conversation about a show I’ve really enjoyed, even if I definitely wish we could’ve been talking about something much more pleasant. As much as you described me as a “deep thinker”—and thank you so much for that, by the way, I’ve been trying to cultivate that sort of eye—your article was very insightful as well, and your consideration to take the time out of your day to respond to my lengthy responses is very much appreciated.

            Liked by 1 person

Leave a Reply to Luna Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s