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When you have CP, falling is a fact of life.
We fall all the time. A young friend with CP once memorably told us: "I've probably fallen 1,000 times. That is not an exaggeration."
Transitioning to using a wheelchair full time has considerably lessened the frequency of my falls (and I still somehow managed to fall out of my wheelchair and onto all fours in recent years.)
I've written about falling before - documenting the details of one of my more spectacular falls - but even in this post, it's clear that trauma plays a role in my reaction.
And I think it's worth talking more about.
Tara mentioned wanting to weigh in on the subject, via a blog post.
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| [Tonia, looking exhausted in a yellow shirt at summer school, where she took many falls, just before starting second grade.] |
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How do things like PT culture and medical trauma impact our ability to discern whether or not we are actually hurt or in pain when we fall?
TONIA: Medical trauma means that I struggle to tell when I am really hurt. Even when I fall, pain is secondary. It activates my trauma, first and foremost as a sudden, jarring event to my body that I cannot control.
It’s similar to surgery in that way. And as someone who has endured at least three major surgeries without anesthetic as a baby and 13 surgeries at once as a ten year old, falling, in comparison can feel so minor.
That’s why, as a 13-year-old, I endured a broken tailbone in silence. It’s why, in my 20’s when I was fallen on by a fully grown adult and likely needed medical attention, I soldiered on in silence or insisted I was fine, even as pain was ripping through me.
Because it still, in no way, compared to the pain I was used to.
TARA: I think that both PT culture and medical trauma fall under the umbrella of compliance culture. Compliance culture depends on disabled people being unobtrusive and making our needs (including our pain) as small as possible.
That is not to say that we do not feel pain. We do. However, our pain barometer is calibrated to an extreme degree.
With painful therapies, procedures and surgeries - all nonconsensual if you’re a disabled child - a part of your daily life, pain doesn’t register in the traditional way. We’re taught that these things are supposed to hurt and that they must be endured. After experiencing the pain of having muscles and bones cut, drilled into, rotated and stretched past the point of tolerance not just once, but over and over, the pain of scraped knees or palms may not register as traditionally painful.
Pain is not an alarm system for us, but something expected that we must tolerate.
TONIA: This last sentence, though. That really sums it up!
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How does being raised in an abusive environment and around emotional blackmail influence our response to falling?
TARA: I don’t know how much of it is being raised in an abusive environment, per se, as much as internalizing the idea that nondisabled people’s comfort is paramount. Sometimes, nondisabled people’s comfort can ensure our safety, so I can definitely see the abuse dynamic in that context.
We become preoccupied with managing nondisabled people’s reactions to our falls. They can easily become centered, even while we are on the ground.
TONIA: Yes, our sense of obligation is not with ourselves and honoring our own bodies. We instead prioritize the comfort of adults or caregivers around us. Perhaps to be sure they're not overwhelmed and able to care for us?
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Would you also say a fear of getting in trouble contributes to our efforts to downplay it when we fall?
TARA: Not so much, in my case.
TONIA: Speaking for myself, yes. I remember one spectacular fall (at the age pictured above) where my face hit three levels of metal shelving before I hit the ground. Toys fell and our video gaming system was unplugged. I was terrified of getting in trouble for making the mess, so I never told anyone I fell.
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Where do guilt and / or toxic shame fit in? Do they?
TONIA: I think they do. Because we're either told explicitly, "This is no big deal,” expected to just get up, or we are asked, “Are you okay?" with the expectation that "You'd better say yes" Not to mention, falling and experiencing an early lack of care and concern communicates "This is no big deal, just do something else."
TARA: Toxic shame and / or internalized ableism definitely plays into the effort to downplay or reassure others in the face of a fall. It is easy to feel like an inconvenience, or to play back any number of ableist words or phrases in those moments. I not only feel like I did the wrong thing. I feel like I am wrong.
TONIA: I really agree with this, yes. Falling is akin to failing sometimes.
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How does alexythemia (the inability to recognize or describe one's own emotions, often linked to trauma) contribute to our reaction when we fall?
TONIA: It makes it really hard to adequately answer whether we are okay or not - not to mention the other factors - explored above.
TARA: For me, when people ask me if I am okay after a fall, the script I follow is to say “Yes.” For all of the reasons I’ve previously mentioned.
I translate, “Are you okay?” to “Are you able to stand / move?” And so, the answer has always been yes.
I don’t know what is being measured when someone asks if I’m okay. Emotional distress? Physical pain? The threshold for both is unusually high, due to a lifetime of ableism and nonconsensual medical procedures.
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It’s been mentioned that specific questions may help us discern if we are okay or not, post-fall. What are some questions that might help us discern whether or not we are really okay?
TONIA: Maybe factual questions?
A friend suggested: “Does anything hurt?” “Are you bleeding?” “Do you feel dizzy?”
I also think that reassurance that it’s okay if we are not okay would help us feel safe enough to eventually admit if we figure out we are not.
TARA: At this point, I don’t know if I could recondition myself to recalibrate okayness. I do know that what helps me is being around other disabled people who know culturally what it’s like to fall - what it means, what it brings up, what it jars loose. Having community in or after those moments is priceless.
TONIA: Yes! The connection to community during / after a fall is so important!
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