Summer Series 2020: When Everything Is Therapy

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Previously on Summer Blog Series 2020:  When Everything Is Therapy / When Therapy Is Chosen For Us / When Walking Is Overvalued / When Nondisabled Parents Focus on Milestones / When Therapy Teaches Compliance

Therapy (specifically physical therapy) for kids with Cerebral Palsy is a topic Tara and I have had on our minds for a while.  And a recent conversation with our friend, Emery, about physical therapy has given us the framework to finally be able to begin discussing and unpacking this subject.

Tara and I were both once children with CP.  Both of us spent a decade (from ages two to twelve) in physical therapy, and Tara did even more therapy following a subsequent brain injury at 16.  (We do feel like therapy can be beneficial in specific contexts for disabled people, which we’ll discuss in an upcoming post.)

To that end, we feel a blog post series is the only way to do justice to a topic like this.  So, join us for the next several weeks as we unpack our reality in the 2020 summer blog series, Therapy.

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For kids with disabilities, even recreational activities are often made into therapy.  Everything is focused on skill-building and progress.  Growing up with CP, it could often feel like everything was therapy.  

Talk about the cost of this mentality and / or its impact on you as a child:

Tonia:  First, let me see if I can explain this a bit further:

Parents and other caregivers can often put their kids with CP in various “therapeutic” recreational activities.  Horseback riding.  Summer camp.  Swimming.  The emphasis is always on skill-building, strengthening, always on “improving” our CP symptoms.

Nondisabled children (for the most part) grow up being able to choose and take part in recreational activities they enjoy and pursue them as a way to stay physically healthy.  They join a team sport, or just run around outside with friends.  It’s not called anything except “playing.”

[Image: A young child stacks Legos]

As a child with CP, growing up in physical (and occupational) therapy, it was clear that recreational activities were for a purpose.  I rarely played just to play.  Even when I played outside on a swing set or a play structure, I found myself thinking: “This is making my legs stronger,” which...is not a usual line of thought for a six year old.

Physical therapy for me was essentially prescribed exercises and stretching as medical care for my CP symptoms.  Sometimes, this was instead of surgery, but sometimes it was following surgery.

The goal for me was always improvement / performing a physical act in the same way nondisabled people did.  In certain areas, I could replicate this (walking heel-toe, for example) but only if I literally concentrated all of my energy on doing that and watched my feet the entire time.

In short, the things that were asked of me would never come naturally.

In my IEPs in school, a reasonable goal (which the therapists there supported) was for me to eventually learn to walk with one crutch.  I thought, if I worked hard enough, I would eventually be able to walk fully independently.

When I could not, and had to get used to using my wheelchair in preparation for high school, I felt like I had failed.

When I attempted similarly unattainable goals (standing with my feet and crutches in a straight (horizontal line) for so many seconds, it was again seen as my own failure.  Therapists wrote that I “didn’t trust myself to balance.”

But trust was never the issue.  I was a literal child, and a child with damage to the part of my brain that controlled balance.

When I could not walk a busy hallway with crutches, or navigate stairs in a nondisabled timeframe, it was said that, “It’s down to Tonia’s determination for the day.”  (When in fact it was down to a million outside factors: my own exhaustion, cold, bustling halls, a slick floor, etc.)

Goals in therapy are often to “get better.” Or to “fix” something that the medical profession deems “wrong.”  

I have a lifelong disability that cannot be overcome, no matter how hard I work.  So therapy just taught me to hate myself.

Tara: The constant focus on improvement just drove home what I already felt due to ableism and a lack of representation in the media - that I was wrong. My body was wrong, which was controlled by my brain. My brain is me. So, I must be wrong. Just existing in the world as I was.

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Should we speak any more on how therapy disguised as play can be specifically harmful or weird?

Tonia:  Yes!  It seems misleading in the least, doesn’t it?

Tara: It does. Play is a child’s way to explore their world. It should not come with a side of self-hatred or able-striving.  For me, this led to being extremely secretive with my play. I became hyper aware of my company, knowing that if adults were around, the policing would begin:

“Put your foot down!”

“Sit right.”

“Why are you doing it like that?”

Feeling the need to play in secret led me to believe that my natural play was also wrong. 

Tonia: Oh gosh, yes.  I recall this, too!  Playing in secret!  I could never place where the need to do so originated!  But it makes sense!  

Our natural, recreational play was absolutely constantly critiqued...which is such a shame, because I feel like the way we seamlessly adapted for each other was kind of beautiful.

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What about the one-on-one attention from an adult found in a PT setting?

Tonia:  This was literally the only aspect I liked...which is problematic, because I should have had adequate one-on-one attention anyway.  

I’ve heard over the years that some kids with CP have trouble socially.  (And I’m sure that can be true for some.)  But for me, I relished attention from someone who didn’t treat me like a baby, or talk down to me like my peers.

I found myself feeling superficially “close” to these adults who were stuck listening to the details of my day.

Tara: I don’t know that I ever felt particularly close to my PTs. As an adult, though, all I can see is the early introduction of disabled kids into a culture of compliance and thus being even more vulnerable to abuse.

Tonia: Which we’ll definitely cover in an upcoming blog post in more detail.

Tara:  There is also something to be said about this one-on-one attention from an adult in your life whose only goal is to make you look and function as nondisabled as possible. When you only get positive attention from an important adult in your life when you’re actively working against your disabled body and the way it naturally moves, then that feels problematic to say the least. 

Tonia:  Put like that, “toxic” is almost the word I’d use...

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Where does authentic play / recreation fit in for disabled kids? Can we? Is it seen as detrimental or a waste of time?

Tonia:  In my experience, I think authentic play really didn’t fit in?  And it was viewed as detrimental and / or a waste of time because my natural movement pattern and gait returned when I was comfortable and at ease.  And what was comfortable for me was viewed as “wrong” by a lot of professionals.

Tara: To go back to an earlier question, authentic play often meant secretive play. I think it is imperative that disabled kids get the opportunity to play and thus learn and make connections. Tonia, I can definitely see how authentic play might be viewed as detrimental to some because of the reasons you gave.

Tonia: To be clear, I absolutely agree that disabled kids are allowed to play authentically, and have recreation be recreation.  Playing is how kids learn about the world around them.  How they process.  By injecting therapy into every aspect of a kid’s life (or even by calling a recreational activity “good therapy,”) it denies that disabled child the right to simply be themselves and exist as they are, without getting the constant message that they need to be fixed.

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Did you grow up feeling like everything was therapy?

How did this impact your self worth?

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