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.
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.
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.