1,961 words
15 minute read
TW: PT on an infant
A friend just told us that she happened to sit through an old episode of Desperate Housewives where a character imagines one of her twins is born with CP. She sent us the scenes. There were three of them.
One turned out to be our limit.
Because a 14-month-old baby is enduring hamstring stretches as he screams in pain. His mom backs off and says she does not know if she can do this (keep stretching him.)
PT says they'll take a break. Mom worries about milestones the baby is not reaching. Dad holds the baby and then goes after Mom when she leaves. Mom is overwhelmed and does not know if any of what they're doing is helping. Dad thinks it is, but says, "even if it's not, this is what there is to do."
Back in the living room, the PT has begun stretching the baby again as he screams and cries in pain. He has not been able to be soothed or allowed to get his breath or calm down.
Mom steps in and takes over the therapy.
This would be disturbing enough as a scene from a TV show set in the 40's or the 80's...but this scene was from an episode of a television show from 2010.
No one would dream of doing what was shown to a nondisabled baby, especially if that baby was in obvious distress.
They talk about his high tone. How important it is to stretch so it will not worsen. They imply that he has already received Botox injections. (But you know what else contributes to high tone? Distress! Being in unrelenting pain. Being unable and unallowed to calm down.)
"This is all there is to do," Dad claims.
But here's the thing: it's not.
Give your baby a warm bath. Try gentle massage. Those are two ways you can help relax tight muscles that don't involve causing harm.
I'm not sharing the scene because, frankly, it's triggering as hell for me.
But trust me.
Painful therapy? Injections? Surgery? That is not all there is to do when your baby has CP.
Related: CP and Therapy
***
TW: Emotional abuse of a child
Truth time?
It took me until 2:30 AM to watch the second scene -- which, we were warned, could be triggering -- and well....yeah, it is.
In the next scene about a decade has passed. Now around ten years old, this little boy with CP walks into the kitchen with the aid of a forearm crutch. (The floors are wood laminate. He doesn't have on supportive shoes. It looks like an access nightmare.)
Related: Things I Want To Tell You, But Can't
We get close-ups on his crutch, his feet, his gait, his hands. Everywhere you can "see" his CP. (In quotes because it's pretty clear this actor does not have CP himself.) It takes 30 seconds of this 3-minute scene for us to see this child's face.
He asks, "Can I have a sandwich?"
Mom tells him she just has to finish these dishes.
Her son (who is not once called by his name) says, "But I'm hungry now..."
Mom tells him: "Unless you want soap on rye, you're going to have to wait."
(This is where we see his face. He's not happy.)
Now, so far? The scene is okay. There's nothing egregious. (Except if you count the hideous access barriers...) He's hungry, but Mom is busy at the moment. She'll fix him a sandwich in a few minutes.
After a significant pause, and Mom regarding him, she says coldly: "Actually, why don't you make yourself a sandwich?"
Kiddo is a bit shocked: "But you always do it."
Mom: "And you always watch me. So I know you know how."
***
Now, here is where I need you to pull up a chair and get comfortable. Nondisabled parents raising disabled children need to realize there is a cultural difference at play. Nondisabled kids may be able to learn things, having witnessed their parents doing them.
But as disabled people, we often don't know how we'll do a thing until we have the support we need to try it safely. Watching a nondisabled person move around their nondisabled kitchen and seamlessly make a sandwich heedless of all the millions of access barriers that block us does not automatically translate for a kid with CP.
Just because we see you do it does not mean we can replicate it, because our bodies work differently than yours do.
A lot of times, growing up disabled means we grow up having adults around us help us with everything. They do for us -- maybe to make it easier on us, maybe to save time -- and then one day, we are faced with a situation like this kid is: where a nondisabled adult in our lives (usually a parent) is like, "Do this yourself."
It's overwhelming.
Because we go from 100% help to 0% help.
There is no in between.
Just the expectation that, "Hey, you're however many years old, you should be able to make your own sandwiches."
***
"I'm tired," Kiddo says in response.
"So am I," Mom responds. "I have to finish these dishes and do the laundry."
***
This is so often a nondisabled person's response to a disabled person's fatigue and / or exhaustion. But it's especially damaging if that message is coming to you from your parent.
Nondisabled kids get the message: "If you're tired, go rest."
But kids with CP (who use at least five times the energy of nondisabled people just to move around) get the message that everyone is tired and their fatigue is invalid because they are such a burden to take care of.
***
"My arms hurt! I had to swim today!" Kiddo insists.
Mom: "And you do that so you can get stronger. So you can do things like make sandwiches! Speaking of which, in the time we've been arguing about this, you could have -- guess what -- made a sandwich."
***
We've already seen in the earlier scene that since this kid was a baby his pain has been ignored. It's no surprise that ten years later, Mom does the same.
And her claim that he could have successfully made a sandwich in the time they've argued grossly misrepresents the reality that those of us with CP need more time to complete tasks because they take more energy, thought, motor-planning, etc.
We cannot be spontaneous.
Whether she realizes it or not, Mom is asking for her son to be spontaneous here.
And it's not a fair request, on so many levels.
***
"So could you!" Kiddo pushes back. "Jason's mom makes him whatever food he wants! Even French Toast!"
Mom: "I would be happy to make Jason French Toast! He always tells me how pretty I look!"
***
Okay, but this is some toxic crap right here, though.
Your child should not have to stroke your ego in order to get his basic needs met. That's messed up.
***
Mom is still on about Jason, her kid's friend:
"Not to mention that Jason's in a wheelchair, so he can't reach the shelves in the fridge! And you can! Too bad you don't appreciate it!"
***
But guess what? Being able to reach the shelves in the fridge doesn't automatically mean your kid is going to be able to successfully navigate your hellish nondisabled kitchen to make himself a sandwich!
So, stop throwing your version of "access" in his face!
Also, he doesn't have to appreciate being able to reach fridge shelves!
Do you, Mom?
I didn't think so...
***
Kiddo's feelings are hurt, and he calls her out: "You're not really busy, you just don't want to help me!"
Mom: "You know what?! One day, I won't be able to help you because I won't be here! And then, maybe you'll understand why I wanted you to learn to do stuff for yourself! Or you wont!"
She turns her back on him here:
"But either way, I'm not making you a sandwich."
***
Let me tell you from experience that hearing these types of threats is absolutely terrifying as a disabled child.
As a parent, you may not realize it is a threat, but when a disabled child relies on you for basic needs, that's exactly what it is.
I was almost six years old the first time I heard it:
On an overnight drive, I had to pee.
We stopped at a gas station and I was carried inside. I was roughly helped onto the giant toilet and then impatiently lectured:
"I'm not going to do this when you grow up! You're going to have to do it yourself!"
I froze in terror.
How was I going to be able to use big people's bathrooms -- even accessible ones -- without help?
Really think about it.
How would that resonate if someone older than you, with more power, and with the ability to access what you could not said to you, "I'm not going to get you what you need," with zero warning? Zero opportunities to practice? Zero in between steps?
Now imagine you're five.
Or ten.
Could you handle this onslaught of emotional abuse?
Because many disabled kids have had to endure it -- and worse -- all in the name of teaching us to be self-sufficient.
***
Kiddo now gets up from the table and walks to the fridge. The door slams open and every single item he retrieves, he drops on the floor and must pick it up before bringing it to the table.
We're back to seeing closeups of his feet. His crutch. His hands. Never his whole self.
He struggles to open the bread bag. We hear his frustration.
But the camera is focused on Mom and how she's clutching the sink. Her hands shaking.
In less than ten seconds, Kiddo has successfully made a sandwich. He seamlessly walks over to Mom with it.
She says, "That looks good. Can I have a bite?"
 |
| [Tonia, age 6, far back in her walker, a disgusted look on her face.] |
***
While this gives the broad strokes of what it looks like for a disabled kid to struggle in an inaccessible home, it doesn't give an accurate picture of how much time and energy this kid must spend just to make himself food, when he is already tired.
The fact that Mom is asking him for a bite when she made him work so hard for it just makes me irate.
***
In the final scene, we see that this kid is now graduating college. And his entire speech is about his mom. As usual, he can't even take credit for his own accomplishments, because it is all about her.
Again, while super accurate, it's not helpful to represent CP or parenting a kid with CP this way.
We know the world will give our parents credit for our accomplishments. We know we have to work at least twice as hard to earn half as much respect as our nondisabled peers do.
Even more disturbing is the comments underneath these videos. It's the number of parents who applauded the sandwich scene in particular as representative of how it is to raise their "handicapped child."
Do you know how disturbing that is?
How normalized abuse is that a show like this (and countless before and after) are able to get away with justifying abuse of disabled kids on screen just because they are disabled.
I need the media to stop.
Stop normalizing abuse of disabled children.
Because it's only helping perpetuate it behind closed doors.
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