We watch TV and make Dad promise not to tell any jokes or talk to any telemarketers like they are his friend in front of us. Laughing hurts too much. No teachers visit and that’s a good thing. Lexie said before that one time, her teacher came and visited and she was in hospital pajamas. Who wants their teacher seeing them in hospital pajamas?
The bad thing is, the TV in our room only has basic cable. Not even any Netflix! The only channel even for kids at all is the one Seth watches all the time. We watch it mostly every day because we don't like watching the news or talk shows.
We have good nurses, though. One’s name is Evan, he’s for me. The other one is Annette. She’s for Lexie. They tell jokes, but not too funny. They write funny messages and little notes and leave them lying around. Evan keeps saying he'll challenge me to video games when I feel better. Annette always pretends she can’t tell us apart. They tell stories after Mom and Dad leave about all the fun stuff we can do when there are “no parents around.” Like order pizza and have dance parties. Evan knows I play baseball and asks me all about it.
“What position do you play?” he asks, while he is turning me. (We have to get turned every two hours. It’s the worst.)
“Right field,” I gasp, blinking back tears. Everybody knows losers play in right field. But Dad puts me there because no lefties ever bat, so no balls ever get hit to me. I’m not a great ball player. I should have told him I was pitcher or something.
[Image: A child pitching in a red shirt and a white hat]
“That’s good. You’re out there where the lefties hit. Those lefties can be sneaky sometimes. It’s good you’re on the case.”
“Dad just doesn’t want any balls to come to me…” I manage.
“I know the feeling..." Evan says, like he really does. "But I also know you need somebody you can really trust out there. Someone patient. Someone who really takes their time.”
Did Dad tell Evan I’m the slowest on the team?
“Well, I definitely do that,” I answer.
Across the room, Annette is asking Lexie to share what her favorite animal is. “We want a dog,” she manages.
“But we could never get one,” I add. “Because we didn’t have the space.”
“We did just move, though. So maybe now we have space,” Lexie ventures.
“What kind of dog would you get if you could get any kind in the world?” Annette asks, typing something.
“I like the golden ones that come in sometimes. The therapy dogs. They’re nice.”
Lexie’s right. They are nice, but I mostly just stay crabby.
Everything seems bad today. Even getting toys and cards from home, because it just makes me want to be there, and not here.
Evan and Annette are Jesse and Lexie's nurses. They help Jesse and Lexie feel better. Who helps you feel better when you're hurt? Lexie wants a dog. Do you have a pet? If so, what kind? If not, what would you choose if you could have any pet?
Disability Representation: Yes (various, but not good)
Rating: 0/4 (Never again)
Excerpt of GoodReads Summary: In a one-of-a-kind collaboration, seventeen of the most recognizable YA writers—including Shaun David Hutchinson, Neal and Brendan Shusterman, and Beth Revis—come together to share the viewpoints of a group of students affected by a school shooting.
What I Thought: I read this one previously, but hadn't for several years. Unfortunately, the reread did not do this one any favors.
This book does all it can to rationalize the actions of a killer, to humanize him, and to make it clear that his victims "had it coming." There was only one POV that I really felt was well done - called "The Second."
Excerpt of GoodReads Summary:When a letter that was never meant to be seen by anyone draws high school senior Evan Hansen into a family's grief over the loss of their son, he is given the chance of a lifetime: to belong. He just has to stick to a lie he never meant to tell, that the notoriously troubled Connor Murphy was his secret best friend.
What I Thought: This was such a mindblowingly good read!
As a writer myself, I loved the concept of writing a book based on a musical after the musical's released (the reverse of what's usual) because it allows for many of the gaps to be filled in.
This was like reading a whole novel full of deleted scenes / extra content that contextualized the musical even more deeply. I thought it was really clever, how Connor was maintained as an actual character in the book and not solely as a figment of Evan's imagination or Evan's version of him. I loved that he was a character in his own right.
Also, getting to be inside Evan's head, too, was a revelation and to really see the reality of his inner-world was so needed and so well done. In the musical, so many of his lines are played for laughs but the book allows for a deeper look inside Evan.
I really, really loved it.
Favorite new read of the year so far!
13.
Genre: Memoir
Disability Representation: Yes (Trauma)
Rating: 1/4 Wheels (Okay)
Excerpt of GoodReads Summary:Born Rosita Dolores Alverio in the idyll of Puerto Rico, Moreno, at age five, embarked on a harrowing sea voyage with her mother and wound up in the harsh barrios of the Bronx, where she discovered dancing, singing, and acting as ways to escape a tumultuous childhood. Making her Broadway debut by age thirteen--and moving on to Hollywood in its Golden Age just a few years later--she worked alongside such stars as Gary Cooper, Yul Brynner, and Ann Miller.
What I Thought: My favorite sections of this book were about Rita's childhood in Puerto Rico and her journey to the United States, and also when she became a mother herself. (Additionally, the comments about living in the time of the chicken pox epidemic and a period of time in the 1960s when grocery store shelves were bare due to people hoarding during a crisis were particularly notable.)
14.
Genre: Children's > Picture Books
Disability Representation: Yes (Cerebral Palsy)
Rating: 4/4 Wheels (LOVED it!)
Excerpt of Amazon Summary: Jennifer Keelan was determined to make a change―even if she was just a kid. She never thought her wheelchair could slow her down, but the way the world around her was built made it hard to do even simple things. Like going to school, or eating lunch in the cafeteria.
What I Thought: I just watched Crip Camp and Jennifer makes a brief appearance at the end of the documentary - the famous footage of her climbing the capitol steps. I first heard about Jennifer (The Capitol Crawl, The ADA, pretty much anything disability-related...) in college. When I saw that Stephanie's Story Time was reading this, I knew I had to tune in!
This book was beautifully illustrated - with a foreword by Jennifer herself - and really explained the situation pre-ADA well, so that kids would understand what was going on at the time. I really enjoyed this one. Still so rare that I get to read about authentic CP representation!
15.
Genre: Romance
Disability Representation: Yes (TBI, OCD)
Rating: 0/4 Wheels. (No.)
Excerpt of GoodReads Summary: Kristen Petersen doesn't do drama, will fight to the death for her friends, and has no room in her life for guys who just don't get her. She's also keeping a big secret: facing a medically necessary procedure that will make it impossible for her to have children.
What I Thought: I checked this one out at the recommendation of a friend and because it was free on Audible. But the disability representation was hideous. (Better Off Dead Than Disabled trope is a thing in this book, heads up.) I found the male lead to be super toxic and abusive and the female lead to be grossly ableist. I could not really root for either one of them, or get invested in the story. But it's always interesting to check out a new author.
Ever since last month, when we discussed Capacity Shift together, Tara and I had been ruminating on another twin blog post together. Then, tonight, we watched Crip Camp on Netflix (so good!), and heard this quote, by Jim LeBrecht, which got us up and rolling:
“I depend on my mother for some things. So, I can’t really fight her as hard as I wish I could. [I depend on her for] some of the things like, just everybody else depends [on] their parents for, like laundry and stuff. But, like, she’s the person who orders special supplies when I’ll need it and stuff. And if I’m in a position where I’m not able to do something, you know, like she’s gonna have to do it. So, like, if you keep on bugging her, fighting her constantly, there’s gonna be a time she’s gonna be very reluctant.”
Tonight, we want to discuss performative niceness.
***
What is performative niceness?
Tonia: Performative niceness is where disabled people must soften ourselves for the comfort of nondisabled people.
Tara: More specifically, I think performative niceness is a human instinct. People are more likely to care for or about someone who is, in a word, nice. So, some disabled people can and do “perform” niceness for a cause.
[In the summer of 2018, Tara and I got stranded at the hair salon when the cab service's computer system crashed. The picture at the top shows us unsmiling and annoyed. The picture at the bottom? We have put on smiles.]
***
Why do disabled people engage in performative niceness? Tonia: Often, I find it’s connected with fulfillment of our basic needs. We may need to rely on someone because they provide a necessary service.
Tara: Yes. We - members of the disability community - do this to attempt to secure services for ourselves. Due to widespread harmful attitudes about disability like ignorance or pity, these services are not seen as basic human rights. Instead, they are viewed as something extra. Something to be done out of charity, goodness or kindness. And on the flip side, these services are something that can be refused, withheld, or done in an abusive manner.
Performative niceness can play into a Good Samaritan’s narrative - doing a good deed for someone (nice) who is in need. It can also sometimes be our only weapon against abuse.
***
What is an example of performative niceness?
Tara: Most often, my performative niceness shows in smiling or being silent or dismissing the ableism of a service provider. (And the service provider could be literally anyone - a friend, a family member, or a professional of some sort.) I also often feel that I “owe” service providers my medical diagnoses when they ask, again as a sort of “payment.” Tonia: Maybe you remember the time I dropped Mother’s Day flowers upside down on the ground? And had to agree to let a horrible pity voiced lady carry them home? Yeah. That happened.
***
Does engaging in performative niceness make disabled people manipulative or horrible? Why or why not?
Tonia: It definitely can feel gross. But I get the feeling that a lot of disabled people know exactly what we’re speaking of, and have had to do it ourselves.
Tara: I think it makes us resourceful, trying to get our needs met.
***
Do you consider performative niceness to be a survival strategy? Tara: Absolutely, though it can be a dehumanizing one. If we spend long periods performing niceness, we are also repressing our natural personalities, thoughts and feelings as a sort of “payment” for these basic services.
Tonia: I agree. yes, absolutely!
It is linked to basic needs and often we are in the position where we must take help when it’s offered. We cannot be choosy. We cannot afford to alienate people, even if we find them offensive, because we might require their help to survive day to day.
***
In your opinion, could performative niceness be connected in any way to the fawn trauma response?
Tara: I feel like it definitely has the potential to be connected.
For those who are unfamiliar, the fawn response is one of four responses people may have to trauma. (The other three are fight, flight and freeze.) The fawn response is to “manage a state of danger or potential danger [through pleasing].” So, in those more volatile or potentially volatile situations, I can definitely see the parallel. But I’m not a psychologist!
Tonia: Ooh, this is fascinating. And I definitely think it’s possible!
In essence, during performative niceness we are demonstrating or playing into nondisabled people’s ideas of disabled people. I know that I get very grateful. Very smiley. Very polite. Even if I dislike how the person is talking to me, or what they’re doing.
It’s imperative to make the nondisabled person feel good about helping us, so they will want to help again, even if it makes us feel gross.
The bottom line is survival, for me at least.
If staying alive means accepting help from someone I’d rather not, then that’s what it means.
***
Have you ever had to engage in performative niceness to get your basic needs met? How did it feel?
When I was growing up, I often begged for the things my siblings got, even if I couldn't realistically use them.
So, when my sister got roller skates, I wanted roller skates. A pair was found at a garage sale. Old, but they worked, and they were my size. I don't recall if anyone explicitly told me they were mine. But I claimed them.
One day, I went outside, and I took off my shoes, struggling into the skates.
Then, I began a super-unsafe coast down my driveway with my walker. I was all wheels, all spasticity, zero rollerskating skill (I had never learned.) We lived at the corner of a busy four-way intersection that did not even have a stop sign until my parents went to city hall and demanded one.
It didn't take me long to realize that rollerskating was nothing like using my Roller Racer (which I had a bit more control over and was closer to the ground.) I veered half into the grass before I hit the street. I got myself back up the driveway by maneuvering like this - half in the grass, half on the pavement - so I'd have some traction.
I was nine years old - maybe ten - and this was the first thing I thought of when I watched episode 3x12 of 9-1-1 (called "Fools.")
***
After coming to school for parent / teacher conferences and hearing mostly good feedback about his son, Christopher, (played by Gavin McHugh) his dad, Eddie leaves on a high, feeling like he's parenting a "funny, popular genius." (Though Chris's science teacher did mention that he apparently keeps telling other kids that "tsunamis are no big deal" which "isn't helpful," according to her.)
The next time we see Eddie, though, he's rushing outside of the school, where Christopher's PCA (Carla) and teacher are waiting. Eddie hears that one of the other kids had a skateboard and were telling Chris how to ride it. Eddie is convinced it was the other kids' idea and that they "made a fool" out of Christopher.
Christopher comes out of school then, and we see his pants are bloody at the knee and both elbows are badly scraped. "I'm sorry about my clothes," he says, and Carla says she'll run home and get him some fresh ones to change into, but Eddie insists Christopher is done for the day. Christopher is bummed because school isn't over yet. (I also love how, every time Chris is picked up, he holds onto his crutches - because it's instinct!)
***
At home, Eddie says that Skateboard Kid got sent home early and they'll discuss a punishment for him in the morning. Carla asks, "What about the kid who fell off the skateboard?"
Eddie is flabbergasted: "You think I should punish him for getting hurt?"
"No," Carla says. "But I think you need to talk to him about how he got hurt. I know he wants to be like the other kids--"
Eddie insists, "You want me to tell him he's different?"
Carla says, "He already knows that. You need to teach him what it means. That he has limitations."
Eddie says, "I'm not going to tell my kid that."
This felt so authentic to me, to have a nondisabled parent resist at the idea of talking to their disabled kid about their disability.
And it is awkward. And hard. The only conversations I remember having with my parents were like:
"You're going to have to work twice as hard as other people because people won't think you can do anything, but you have to prove them wrong."
Because they weren't disabled, I felt like they were being critical of me, too. Telling me, in a sense, how they felt about me.
That I'd have to spend all my life working twice as hard to even be recognized as capable, or human, or legitimate.
***
Christopher comes into the kitchen, and Eddie checks in with him, asking how he's feeling.
"Dumb," Christopher says sadly. "Everybody saw me fall."
Carla tries to reassure him that, "Everyone falls down sometime. You don't have to feel embarrassed about that."
Eddie asks more about how Christopher ended up on the skateboard and is surprised to hear him say, "It was my idea. It looked fun. It wasn't." Then Christopher tells Eddie, "You always tell me I can do anything everybody else can do. You lied."
And yup.
I heard, all the time, "Tonia's just like everyone else, she just uses a walker."
So, I thought I was. I tried so hard to be. But no matter how hard I tried, I couldn't ever lose the need for adaptive equipment. I spent until I was twelve or thirteen believing that if I worked hard enough, I could one day walk without crutches (because it was in my IEP as a "reasonable goal for me to keep working toward," even though it was not possible.)
Unlike Christopher, though, I didn't have the feeling I was lied to.
I felt like I had failed when I couldn't manage to walk without crutches.
***
Next, we see Eddie talking with his best friend, Buck, about what happened with Christopher. He's reeling over this latest developmental milestone - Christopher telling Eddie he lied to him.
Refreshingly, Buck tells Eddie this is a usual stage. And then Eddie continues to muse that perhaps he did lie to Christopher - and to himself - by being in denial about what Christopher is able to do.
Buck talks to Eddie briefly about baseball player Jim Abbott, who pitched a no-hitter in the '90s with only one hand. Eddie asks for details, and Buck clarifies that he practiced the adaptation he'd need relentlessly.
Eddie listens, admits he "likes the positivity" but then says something like, "But no amount of practicing will let Christopher ride a skateboard." (It is so far from the typical Overcoming Disability Narrative, friends. My mind was so blown, in the best way.)
***
The next time we see Christopher, it's before school. Eddie calls for him to come and eat something before they have to leave.
Christopher appears, still in pajamas. He says he doesn't feel well.
"Are you sick?" Eddie asks.
Christopher nods.
Eddie feels Christopher's forehead, checking for a fever, "Are you sure?"
Christopher then admits, "I don't want to go."
Eddie picks Christopher up and carries him to the living room to sit down. "Are you still upset about the other day?"
"I just want to be like everyone else," Christopher says. (And break my heart. How many disabled kids have felt just like this? I know I have. Especially when surrounded by nondisabled kids.)
Eddie says gently, "But you're not. I know I told you you could do anything, but that was a dumb thing for me to say."
"Because I have CP," Christopher fills in, knowing.
"No," Eddie says, "Because no one can do everything. There are some things that you're not going to be able to do. And some things that you are going to be able to do, but are going to be harder for you than they are for other kids, because you have CP."
"I'm sorry," Christopher says. "I won't skateboard again."
Eddie tells him it's not about the skateboarding. That he doesn't want Christopher to be scared to try new things.
"But you can skateboard," Christopher objects.
Eddie agrees, but then tells Christopher that he (Eddie) is incapable of growing plants. That he's killed every single one he's ever had, but that Eddie heard from Christopher's teacher that he did the best job at growing plants from seeds out of anyone in his class. "So, there's something you're better at than me."
"Really?" Christopher says, perking up.
"Really," Eddie says. He reminds Chris again that he doesn't want him to stop trying. That some of the things he tries won't work out, but maybe the next thing will. "Maybe, until you get a little older, though, we try new things together?"
Christopher agrees, and Eddie tells him he loves him and they hug.
"You're not like any other kid," Eddie says, pride in his voice. "You're my kid."
***
Eddie then goes back to Christopher's school and apologizes for snapping at his teacher. She then tells him that sometimes trying something new can let you know what you're good at...and sometimes it can let you know where to look next.
That Christopher may not be able to excel in skateboarding, necessarily, but that he might grow up to write the next American novel.
"Not tomorrow," she reassures, "but eventually."
I really appreciate that Christopher is not framed as an exceptionally smart or successful child with CP, who earns his place in the show - and in the world - by being exceptional in another way - to "offset" his disability.
***
In the last scene featuring the Diazs, Eddie and Christopher are at a park. Christopher says "I don't want to be here."
Eddie says, "Remember what we said about trying new things together?"
"Yes," Christopher says.
Buck and Carla appear pushing an adaptive skateboard with a frame and harness.
"What is that?" Christopher asks, wary, but with a smile spreading.
"You want to try skateboarding?" Eddie asks.
"Okay," Christopher answers with a hesitant smile.
He's safely secured on the skateboard, wearing a helmet, and being pushed by Eddie and Buck while Carla runs alongside, filming him with her phone.
***
I think, deep down, nine or ten-year-old me has needed to see this episode forever.
Because after nearly rollerskating into a busy intersection, and making my way back up the driveway - into my shoes - and into the house? That was it.
No one talked to me about it, because no one ever knew I did it.
But I love the fact that kids with CP today can maybe see Christopher trying things and falling down...and parents can see how Eddie handles the situation and maybe handle the next time their kid with CP does something unsafe because it looks fun a little differently...because they've seen a different way represented.
Or maybe, they can tell their kid before anything dangerous happens. "Hey, if you want to try something new, that's great. But let's try new things together until you're a little older."
[Image: A clock shows it is seconds away from 12:00]
When I wake up, it feels like one second has passed since I got that mask on my face.
It hurts so much. The I.V. in my hand is supposed giving me lots of medicine to make it not hurt. Maybe it’s broken.
I’m cold and I try to say something, but I can’t again. I want to see Lexie. Just to know she’s okay. I feel like I haven’t seen her in days. I have no idea what time it is. Is it still today?
I get to a room and I’m moved onto another bed. I make a noise, because it hurts so much more now. I’m glad when all the extra people leave and I’m alone. I look over, and Lexie is in the other bed, sleeping. She has two casts. I have one, with two brand new scars on my other leg, no cast.
“Apple pie…” Lexie moans, and it makes me laugh. That makes my legs shake and hurt a lot, but I can’t help it. Her sleep-talking is the funniest. I almost cry from the pain but I don’t. I just tell Mom and Dad to make her be quiet.
“Guess I’ll be baking an apple pie…” Dad says softly to Mom. Mom strokes my forehead and that helps a little.
Jesse has to ask Mom and Dad for Lexie to stop making him laugh because it made his legs hurt. Have you ever had to ask for somebody to stop doing something that hurts you? Did they? Jesse wishes surgery never happened to him. Have you ever felt like Jesse?
My state decided to close schools through the 27th, with the intention of transitioning school online.
There's so much uncertainty right now. Many people, I'm sure, want to help, but don't know how. Here are five simple things you can do to support at-risk segments of the population.
[Three people walking, two of them elderly, side by side by side]
1. Stay Home If You Are Sick: This seems basic, but I know a lot of people have been raised to power through illness with the notion of "I'll survive." And yes, if you're not in the at-risk segment of the population, chances are good that you will. But think about who you're exposing.
Those of us with lowered immune systems due to Down Syndrome or HIV, those of us with underlying neurological conditions like CP, epilepsy or brain injury, and the elderly? This illness will hit us harder. You likely will survive but for a lot of us, the reality of our surviving something like this is far less certain.
Know that staying home if you feel unwell is one of the best things you can do.
2. Practice Social Distancing / Don't Travel: I know it's Spring Break season. I know everyone is restless from being indoors during the winter, but seriously. Do not travel right now unless you must. I know lots of big public events are being canceled but you can also help us by doing a little social distancing yourself.
3. Check In: If you have disabled, immunocompromised or elderly friends family members or neighbors, check in with them. Know that this is a very scary time for us and we could all use your support and connection as much as possible.
4. Please Don't Hoard Resources: I know it's so tempting to buy out the high-demand items, but leave some toilet paper for the rest of us, please. (Same goes for the cleaning wipes and the canned goods.) If you're set for a two week stretch that's a great start. But anything beyond four weeks of stocking up? That's honestly taking away resources from others who need them. We all need to share if we're going to get through this.
5. Give: And last but not least, give. If you are in the position to safely offer a meal or a gift card to anybody high-risk that you know, do it. If you can safely offer to make a trip to the grocery store for someone. That's such a relief, and we appreciate it. If you can't do either, but still want to help, here's a list of disabled folx's Amazon Wish Lists, PayPal, Venmo, JustGiving, Etsy accounts. Even if you cannot contribute, please RT the lists / signal boost the thread.
Remember, we are going to get through this. Do what you can to stay safe and keep others around you safe.
Take care of each other.
For many of us, we're all we got.
When you question what you're doing all this for, just remember, you're literally helping people stay alive.
I can’t talk at all on the way to surgery. Because of the strange people and also because my mouth is dry. I don’t know how Lexie found all that stuff to say. I don’t know how she felt so relaxed. I don’t. I hang onto Mr. Hopps really tight. They put a sticker on him that says my name. I want to tell them he’s not mine, he’s Lexie’s, but I can’t.
I have to be brave. Lexie’s done this lots of times. I take a deep breath to calm down but it doesn’t help. Soon there is a mask on my face that’s supposed to smell like the orange scent I picked out, but it’s a joke because it only smells like orange barely at all.
[Image: 3 oranges. One is sliced, next to an orange flower.]
I’m the most scared ever, but only for one second, because then my eyes close.
These days, I'm not going to lie, it's pretty scary.
Being part of a high-risk population in the middle of a pandemic is no joke - and certainly nothing I've ever seen in my lifetime.
The truth is, though, I've practiced social distancing quite a bit, just in my regular life. Being an introvert plus being disabled means that my world is comfortably small. It's second nature for me to stay indoors.
But I know that's not the case for most people.
So, I wanted to share some tips here:
[Image: Various indoor plants by a window]
1. Have a Schedule: This does not have to be set in stone, nor does it have to plan out every inch of your day. But schedule aspects of your day, at least. Maybe clean / disinfect your electronics / a certain room in your house first thing. Eat your meals at predictable times.
2. Do a Project: Are you a writer? Sign up for Camp NaNoWriMo in April and use this month to plan. (Brainstorm. Make a Pinterest board. Make a playlist.)
Need something to occupy your family? Create something together. Use your imaginations. Take turns creating your ideal world or contributing pieces of a story that you all create together. Go on imaginary journeys to space or under the sea. Sit quietly and close your eyes, then ask your kids what they see. Take turns sharing. 3. Read: Go to GoodReads and set a reading goal for 2020 if you haven't yet. Then, take time every day to read.
Have kids? Great! Read out loud to them (and let them take turns reading aloud, too!) Read the Harry Potter series from the beginning. (Or if you're from my era and still have books from your childhood, introduce them to Goosebumps or The Babysitter's Club!) 4. Marathon: You know there's that one show you've been wanting to watch from the beginning. It's on Netflix, or maybe you've got the DVD box set. Set aside some time to watch it.
If you're like me, you need opportunities to turn your brain off. To focus on something else. To get lost in another world, another person's life, for a moment (or a day, or maybe longer. No judgment here.)
(Grey's Anatomy has 16 seasons. Criminal Minds has 15. If you're looking to really immerse yourself into something.) 5. Stay Connected: This is probably the biggest concern I've seen from people. How do I stay connected to my friends if we can't get together?
Social media is a great tool for this! You can check in with your friends using Facebook messenger, Facebook video chat, Facebook voice notes, FaceTime, Skype, or my personal favorite, the Marco Polo app.
Make time as needed to connect with friends and loved ones. Maybe that's daily. Maybe it's weekly. But check in. Especially if you know your friends or loved ones are at a high risk due to immunosuppression, age, or disability, check in on us.
Let us know you're thinking about us. Ask how we're doing. Talk about shows, movies, books, or share a funny story. Trust that our brains are full enough of worst-case scenarios.
I got invited to attend a workshop (remotely, because reasons) called Stop Making It Weird. I ended up taking so many notes on it, that it felt like a blog post was in order.
***
FIRST IMPRESSIONS:
The first thing I noticed was that it seemed this workshop was led by nondisabled people. Curious (but by now, I expected it.) Nondisabled people putting their heads together and telling each other about how not to make it weird for us.
They made sure to reassure attendees that they were not judging anything anyone may have done, because even the presenters had unknowingly 'made it weird' for disabled people. (One presenter shared a memorable example of how she bent down to hug a child in a wheelchair, by way of a greeting. She had no idea who this kid was.
The kid smacked her in the face.
"Okay," the presenter said. "Lesson learned."
Indeed.
***
HOW ARE YOU EXPOSED TO PEOPLE WITH DISABILITIES?
Yes, the speaker did comment on the unfortunate wording here. As it stands, it really does sound like we (as disabled people) are just a bunch of diseases.
The speaker also pointed out that some people say that "any exposure is good exposure..." but like...no.
So, the question was put to the audience, and I waited, curious to see what would be said:
Media: Someone mentioned there's a contestant on Project Runway that designs clothes for people with disabilities. (No word on whether the contestant is, themselves, disabled, or not. Glee was also mentioned.
Parents of Kids With Disabilities Oversharing About Them on Social Media: And that pretty much says it all.
Target: Someone mentioned they see a lot of people with disabilities shopping at Target.
Auto Show: One of the presenters then chimed in to add that she had once seen "a whole flock" of people with disabilities getting out of a van to go to an auto show...
(Did I miss the memo? Are we diseases or are we geese? Oh, that's right, we're neither. We're human beings.)
Cleaning Crew: People with disabilities have also been spotted by nondisabled people as the cleaning crew at various times. In this case, it was pointed out that about 5 people with disabilities were all cleaning the same small section of floor, and whomever was supervising them (presumably nondisabled) saw fit to tell them when they "missed a spot."
[Image: A sign that reads INSPIRE in red letters]
As a person with CP myself, I was stunned to hear answers that were so distant. Statistics say that at least 1 in 5 people are disabled. None of these people were actually disabled? Just me?
Inspiration Porn:
The audience is now informed about inspiration porn and told of its types - Facebook memes, mostly. And news stories. One of the speakers memorably said: "Disabled people don't like inspiration porn because it doesn't add anything to their lives."
Now. It is true that most disabled people I know (specifically adults who have had the chance to individuate from our nondisabled parents) agree that we don't like inspiration porn. But it's not because we're looking for ways it can benefit us. That's the whole point. And that's where not having a workshop like this led by somebody nondisabled does a disservice. Because nondisabled people look at inspiration porn in terms of what it gives them.
Watching it makes them feel good. It gives them a boost. It makes them feel like their community is wonderful for helping out our own.
All inspiration porn does is objectify disabled people. That's literally all it does. In other words? It actively harms us.
***
USING DISABLED PEOPLE'S CONTENT / STORIES ABOUT US WITHOUT COMPENSATION OR CONSENT
Now, I love Stella Young. I do. I've shared the same link. But something about watching her speak for 10 minutes - watching her speech be used in this manner sat wrong with me.
Yes, it's a good thing to share and utilize content by actually disabled people. Especially when you're speaking for 90 minutes about us.
But.
Do you know how many times I see on my social media (as I follow a number of disabled people) I see that we are asked to come and speak, but then told there's not enough money in whatever budget to pay us? We are often expected to do emotional labor for free.
...That's sort of what it felt like, as a disabled adult, seeing Stella Young's TED Talk being used to inform the audience, while there were no actually disabled speakers there (that I know of, anyway.)
Grocery Store Employee Lauded as Hero for Giving Disabled Person Opportunity to Stock Shelves:
We all remember the story. I'm not going to link it. Because why. But there was a Facebook post made about this moment, which resulted in a GoFundMe being made for the employee, and a new car for him as well. (Apparently the disabled person was offered a job after there was enough public outrage, but his family declined it for him...)
The employee and the disabled person were named (first names only) but in most of the coverage I recall seeing, he was not.
The audience was asked the following questions, which I definitely want to answer:
What do you think about the story?
I think if it was about a nondisabled person being given the opportunity to stock shelves because that was an area of interest....it wouldn't be news. Plain and simple. I think it's exploitative.
What message does it send?
Sharing stories like this that laud nondisabled people as heroes for being decent to disabled people send the message that we are not worth very much.
If you've ever been the subject of an inspiration porn story, you'd know that in actuality? It is traumatizing to be so thoroughly objectified. To be used. To know that someone is benefiting financially because of what they chose to do for you. We feel like an object. Worthless.
We are often not asked if we'd like to be featured in these types of stories. We are not asked if we consent to our diagnoses and other information can be shared with the public.
(It also ignores the deeper issues that exist when a disabled person is dependent on nondisabled people for basic needs and must comply with the exploitation in order to continue to get our needs met.)
What could have been done differently?
Just don't post about it. Don't take pictures of moments like this. It's not news. By doing so, you're just further ostracizing and objectifying us.
***
Faltruism: I did very much appreciate getting a word for the thing nondisabled people do where they do things for us...but it's actually self serving, and it does not take us into account.
***
12-Year-Old Nondisabled Wrestler Celebrated For Letting Wrestler With CP Win:
The heading pretty much says it all. A middle-school aged child with CP named Jared wanted to be on the wrestling team. He got to be on the team. The next question he (naturally) had was "When can I get on the mat?"
Jared's CP is quite involved. He uses a motorized wheelchair to get around. Without it, his mobility is super limited.
Behind the scenes, adults conversed. The opposing team's coach was asked if he had a wrestler who was, essentially, sensitive enough to handle this situation with some 'kindness.'
The thing is, no one actually told this other wrestler what to do or how to handle the situation. He went with his gut and positioned himself under Jared, staying still so Jared "won" the match.
What do you think about this story?
This one just really got under my skin. As a person with CP myself it just felt gross. I'm not blaming either child, to be clear. Jared was just used as a plot device, basically, and the nondisabled kid was put in a position nobody should have to be in - where he was pressured to lose on purpose.
The kids are named. Both are present during the interviews, but only the nondisabled kid is actually interviewed. The child with CP sits quietly while his dad talks.
I found it interesting that an audience member at the workshop pointed out that so often nondisabled people don't know what to do in these types of situations. Media coverage gives them a template and tells them what to do. This allows them to be more comfortable, but as the person said, "Don't put me in that situation."
I want to address not knowing what to do:
What you do is educate yourselves.
Read and watch content by disabled people. (The internet is full of it, trust me.) And no, we are not a monolith, but I think you'll see overarching themes that the majority of us agree on.
A parent of a child with CP said she wanted the story to focus on how he was included and what he was doing. "Don't just let him win."
What message does it send?
A couple people in the audience said it best: "It's showing that disabled people can't succeed on their own merit."
And also:
"[Jared] knows the other kid doesn't respect him. He knows it's pity!" (Which, yes! Absolutely!)
What could have been done differently?
I think this question is really important - because a lot could have been done differently.
First, someone could have talked to Jared, connected him to adults with disabilities who are involved in sports to help him think about accommodations he might need.
Secondly, know that putting him with nondisabled kids is putting Jared at a disadvantage always. CP affects everyone in different ways. But the competition would be more fair if it were among disabled athletes and if Jared actually got the chance to practice. (I suspect he attended practice, but did not get to do a lot of it. Instead, I feel like he was likely treated as a mascot, which, again...ew.)
***
LANGUAGE MATTERS:
Yes, it does! And the speakers asked for examples of language used specifically for disabled people (not for the general population. I cringed in particular at "noncompliant" and "behavior" (because hello! Autonomy and communication anyone? No? Just me again?)
There was talk of businesses with horribly euphemistic names around employing disabled people. Talk of a "make believe mall," where disabled people could 'practice' shopping without actually buying anything. The idea being - without the stress / fear actual shopping trips might evoke.
HOW SCARY AND DANGEROUS IS THE REAL WORLD?
An audience member commented above here. Lightly. In a joking manner.
But the truth is, nondisabled people must recognize their privilege. Because for disabled people? The world is very scary and dangerous.
We are abused at higher rates than the nondisabled population - even killed - but more often than not? No one is charged with a crime, because the crime of harming us - or worse - is viewed as "understandable, given the circumstances."
Every single time I go out anywhere, I brace for ableism. It's the exception, not the rule, if I somehow, make it home unscathed.
Ableism is abuse. Ableism is harm.
GOOD INTENTIONS:
I heard a lot about good intentions. How the Make Believe Mall was made with good intentions because then "people with disabilities have the opportunities to shop without getting arrested for stealing."
Um, what.
People with disabilities deserve to have experiences in the real world as often as tolerated. But often, we are not taught the things that nondisabled kids are taught, because it's assumed we can't do them.
Give us the chance. Discuss things with us beforehand (a lot, if necessary...with clear and straightforward language if necessary.)
I was glad this was also pointed out in the workshop - as was the reality that we are more likely to be abused in segregated situations and the reality that the longer we are segregated, the less nondisabled people will interact with us.
The truth is - most ableism I experience is immediately dismissed because "the person probably meant well."
Yes, maybe so. But that doesn't mean they didn't also harm me.
TRY TO MAKE IT...LOOK LESS WEIRD:
As a final example, one of the presenters talked about going to the State Fair and saw a bus full of people with disabilities arriving. She saw a woman put on gloves and then proceed to lather the man's head with sunscreen.
"I wanted to cry," she said. "Seeing him get treated like that. Imagine if that was you, and try to make it less weird...or at least look less weird."
I have so many questions.
First, absolutely, there should be a conversation between the woman with the gloves and the man. She should, at the very least, ask his consent before touching him.
But...
There is nothing sad about a man getting help with his sunscreen. There's nothing sad about it happening in public. (How many times do you apply sunscreen in public?) Is it sad that he's being helped? Sad that she is wearing gloves? What's the sad part?
The point of the workshop was about, essentially, recognizing ableism in order to call it out and stop it. Hence, Stop Making It Weird (which, we can discuss how not calling the workshop what it actually is is harmful at another time...) But when you veer suddenly from "call out ableism" to "make it look less weird," that is problematic.
Because, again, it becomes about nondisabled comfort. Nondisabled people centering themselves. Their discomfort becomes what matters. Again.
THINGS THAT MAKE IT WEIRD:
- Nondisabled people teaching other nondisabled people how NOT to 'make it weird' for us.
- Touching disabled people without consent.
- Othering us / talking about being 'exposed' to us like we are a disease. Or a flock of birds.
- Using our content without asking consent
- Inspiration porn
- Telling us we are being 'noncompliant' when we try to have autonomy and that we are exhibiting 'behaviors' when we are communicating with you.
- Assumptions that the world isn't dangerous for disabled people
- Your good intentions
- You feeling like us getting help in public "looks weird." HOW YOU CAN STOP MAKING IT WEIRD, ACCORDING TO THE WORKSHOP:
- Universal design (The focus on universal design as a good thing because of how much it benefits nondisabled people felt gross to me, honestly.)
- Speak directly to a person with a disability
- Take time to listen
- Treat people how they want to be treated (Ask preferred language and then use it.)
- When you hear ableism or see it, call it out.
- Always, constantly check yourself
ALSO:
I would add...
- Talk to actually disabled people. Invite us to speak on issues that concern us. (Pay us for the time.)
- Know that we (disabled people) are constantly put in the position where we must cater to nondisabled people's feelings - even at the expense of our own safety.
The next morning, when Mom wakes me up, I am super confused. I’m on the floor, for one thing, and I know for sure I went to sleep in my bed. I remember Grandpa tossing me in, the funny way he does. How did I get down here?
“It’s the middle of the night,” I complain and pull my pillow over my head.
“I know it’s early, honey, but we have to get moving. So get up and put your clothes on, okay?”
Back when Lexie and I were in second grade, we used to sleep in our clothes for the next day, so we would have more time to watch cartoons before we went to school. I wish Dad hadn’t caught us at that because I would have definitely done that again. I really want more sleep.
I get my clothes and go in the bathroom, glad to be away from Seth and his teeth-grinding. That’s when I realize, Grandpa’s in my bed. I hope someone told him to bring earplugs. I’m dressed and I dart back into my room and grab Mr. Hopps by an ear. Lexie would not be happy if I forgot him and I wouldn’t either.
“What time is it?” Lexie whines.
“Gross o’clock,” I answer. “Don’t look. It’s still dark out.”
I don’t talk anymore. Mom says we can sleep in the car, and I want to sleep bad, so I hurry. I’m already in the back seat of the car, with my head on the window when Lexie gets in. I know without looking she’s leaning against her window, on the other side of Seth’s car seat.
“Apple pie…” she mutters.
[Image: A hot apple pie]
I almost throw Mr. Hopps at her but then decide that listening to Lexie is a lot more entertaining than listening to Seth.
The drive is forever, but that means more sleep, so I don’t complain.
We get to the hospital and I still feel tired. Lexie’s in her Batmobile and I kind of wish I had one, too. I guess I will, soon enough, but it probably won’t be as good as her personal one that fits her perfectly.
After such a long time of Mom and Dad filling out forms, they ask which one of us wants which one of them. Lexie wants Dad, and I want Mom, so that works out.
Lexie is going to surgery before me, which means I have to wait even longer. At least I don’t have to go first. I say bye to her and she makes Carrot Breath wave.
I can hear her telling all the nurses the plot to Teenage Mutant Ninja Turtles: Out of the Shadows. It’s PG-13 but Mom and Dad made an exception and let us see it. Guess why? Because when they were growing up, they watched movies about the ninja turtles, too, except lower quality, because it was the ‘90s.
"Mikey sees it's the Halloween parade and says he's always wanted to be in the Halloween parade, because it's the one night of the year when they fit in. Leo tells him, 'We'll never fit in. We're ninjas. We live in the shadows...'
It's the last thing I hear Lexie say before she gets wheeled away.
I know why it's her favorite part. Because that's sort of how we feel, having CP. Like we'll never fit in.
Since the idea of TMNT makes me feel better, I find Out of the Shadows on the I-Pad and watch it with Mom until it’s time for me to go.
“The movie’s not done…” I say, but what I mean is, I’m not ready….
“You can see it when you’re done. I promise,” Mom says and takes the I-Pad gently out of my hands. She gives me a kiss and says she and Dad and Lexie will be waiting for me when I come back.
When we get home, what I really want to do is watch Wheel of Fortune on TV with Grandma and Grandpa, but we have to pack our stuff for tomorrow and then get to bed. We have to get up when it’s still dark out tomorrow to go to the hospital.
Mom and Dad pack our regular stuff. All Jesse and I have to do is decide which stuffed animal we’re taking into surgery with us, and what other toys and blanket we want to bring. I check the time on my dinosaur alarm clock: 6:43!
Only 17 minutes to eat my Junior Mints!
“Jesse, come here!” I call.
“What?” he asks.
“Did you eat your candy from Grandpa?” I whisper loudly. It doesn’t matter that much - Seth’s in the living room, shouting letters at the TV with Grandma and Grandpa.
“Oh no!” He sneaks into my room and closes the door. Then he reaches in his shirt pocket and takes them out. “Mmm… Reese’s Pieces are the best,” he moans.
“Uh-uh,” I shake my head. “Junior Mints.”
“Are you bringing Mr Hopps tomorrow?” Jesse asks.
“Yeah. Are you bringing Carrot Breath?”
“I can’t decide. I kind of want to bring Captain America and Green Man…”
“They’re, like, two inches tall!” I exclaim. Captain America is small and old-fashioned and Green Man is a tiny green plastic cowboy. “You’ll lose them in the bed. You have to bring something bigger than that.”
“Fine. I was just thinking...like...they’re tough, and can protect me. All Carrot Breath ever does is eat.”
“Here. You take Mr. Hopps. He has lots of practice at being a surgery animal. He knows just what to do. I’ll take Carrot Breath and show him what to do. Plus, it’ll be like we’re with each other then.”
“Okay,” Jesse smiles a little, eating the last of his candy and brushing his hands off. “I like that idea. Should I get him now?”
“Nah...Sleep with him tonight. We’ll switch off tomorrow.”
“Are you sure you’ll remember? I really want the one with the experience.”
“I won’t forget.”
“Good… ‘Cause Mom and Dad said I have to sleep in my room tonight. No staying up late talking.”
My face falls.
“We’ll never be able to sleep then…”
“I know…” Jesse sighs, and then brightens. “Wait. Here!”
He disappears for a few seconds and then throws Carrot Breath at me.
“I told you to keep him tonight!” I laugh.
“I’m the oldest, so what I say goes,” he smiles, so I know he’s not being mean, just stating the facts. “Besides, I want Carrot Breath to get used to you. Where’s Mr. Hopps?” he asks.
“Here,” I say and start hopping him over to Jesse. I stop, and cuddle my rabbit, rubbing his nose with mine. I whisper for him to take good care of Jesse and I tell him I love him. Then I let him go.
“Okay. Tell me everything you’re packing,” I say.
“I will.”
[Image: A big brown suitcase with a brown teddy bear halfway in]
Neither one of us talks anymore about tomorrow. We have to do it no matter what. Talking won’t help. Once I’m all packed, I get tucked in by Mom and Dad (normally) and Grandma and Grandpa (Grandpa likes to pretend-toss us into bed. Grandma prays with us.)
Once they all leave, and the light’s off, my stomach growls. I look at Carrot Breath in the dark.
“Think we’d get in trouble if you raided the fridge?” I whisper.
Carrot Breath twitches his nose once. That means, “Absolutely.”
I sigh, and try to count sheep, but they all turn into ice cream sundaes. When I’m falling asleep, I hope I’ll dream of CandyLand.
You can eat as much imaginary candy as you want before surgery
Lexie and Jesse bring Mr. Hopps and Carrot Breath to the hospital with them. When you go to the hospital, what do you bring with you to help you feel better?
Grandma and Grandpa have a special bedtime routine with Lexie and Jesse. What is your bedtime routine?
