Saturday, July 4, 2020

Summer Blog Series 2020: When Therapy Teaches Compliance

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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

If you’ve read along with us these past five weeks, thank you.  This will be our last post in the series.  Tara and I will discuss the line between therapy and teaching compliance as a gateway to abuse.  We’ll talk about how many well-meaning parents are encouraged into abusing their kids (under the guise of therapy).  We’ll share whether or not it felt safe to have our own parents administer our PT.  And finally, we'll discuss what the ideal roles should be for a disabled child in therapy, their parent, and their therapist.

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Talk about the link between therapy and teaching compliance as a gateway to abuse / the concept that adults get to hurt disabled kids.

Tara: Something that is commonplace in PT environments is therapists mocking a disabled child’s gait.

In my case, I was about eleven years old. I was doing outpatient PT after a major orthopedic surgery. My therapist said casually, “Let me show you something…” This wasn’t out of the ordinary. My PT regularly demonstrated physical tasks, so I was unconcerned.

She then began walking in what I thought was a deliberately silly manner. Her body moved unnaturally as she walked the length of the room. I watched this, and eventually, I began to giggle uncomfortably at the absurd public display.

She walked back toward me as I continued to smile and stopped in front of me. That was when the bottom dropped out of my world. My therapist looked me in the eye and told me, “That is what you look like.”

I was stunned and devastated but tried not to show it. I felt like I had even betrayed myself by laughing. I had been made unwittingly complicit in my own emotional abuse.

That day taught me that I was supposed to hate myself and make fun of myself - that it was a given, since I walked the way I did. And if this was expected of me, then of course, it was expected of anyone and everyone else in my life.

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Tonia:  Nondisabled kids are usually taught from a young age that if an adult hurts them or touches them in a way they don’t like, that’s not okay.  They’re told to come and tell someone they trust.

Related: Parenting Kids with Disabilities: Autonomy and Consent

On the contrary, therapy for disabled kids (and even more - the combination of surgery and therapy) is sending the message that adults get to hurt us.

I still have notes from having PT as a child which essentially say that “Tonia wants to do a good job, and she’s cooperative.”  Which, if you squint, looks a lot like I was being praised for being compliant.

If something hurts, we are shushed about that.  If we fight back, we are told not to.  Again, with the notion that it has to hurt to be effective.

Also, if we get hurt in therapy, even accidentally, it’s seen as no big deal.

I’ve even been blamed for injuries I sustained there.

Once, at 7 years old, I was using a green theraband to do a hamstring stretch.  (Green offers more resistance than yellow or red).  The band slipped off my shoe and snapped me hard in the face - so hard that my head hit the wall behind me.

“Ow!”  I exclaimed.  Tears welled in my eyes.

My therapists just laughed, “It’s like a huge rubberband!” and made the comment, “Can you imagine this happening at home?”

So, I laughed it off, even though I felt super on-guard the rest of the session.  My therapist reprimanded me for a lack of focus.  What looks like a lack of focus is, in fact, a dissociative trauma response.  I didn’t feel safe doing the exercise unless she kept her hand at the bottom of my shoe, ensuring the band stayed in place.

This was all caught on video.  No one even stopped filming.

I got the message that I wasn’t paying enough attention and that’s why I was hurt.

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How many well meaning parents are being encouraged into abusing by medical professionals?  

Tonia:  I have no idea...but if it’s not zero?  There is obviously a problem.

Tara: The unspoken notion that you mentioned above, Tonia, that PT has to be painful to be effective is widespread. I see it most often with hamstring stretching.

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Did it feel safe having your parents do your PT?  

Tara: I don’t recall having my parents do my PT. I’ve been instructed by them on occasion regarding PT, but I can’t remember them actually physically maneuvering me in that way.

Tonia:  I don’t have many memories of my parents assisting me with my PT.  In fact, I have one.  One memory of being stretched by a parent, one memory of being up walking after my most major surgery, with a parent standing by.  Neither felt safe.

From a young age, we were responsible for our own PT.  After surgery at ages 10 and 11, we had to do our own hour-long PT sessions. I was often made to start an exercise over if it was decided I was not doing it “right,” and it would take even longer.

What happened most often, for me is that I was threatened daily from ages 10 to 14, that if I didn’t stretch (aka if Tara did not stretch me) I would have to have more surgery and it would be my / our own fault.

Considering how traumatizing my history with surgeries had been, especially the one as a 10-year-old, that threat was effective.  I was always on guard if one of my parents were around and tried to always make it obvious that I was stretching or “trying to stretch” or doing something so that I would not be threatened with surgery in this manner.

[Image: Tonia at 14, seated in front of the TV, hands on her knees, so that "stretching" was always happening...even on vacation...]


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In an ideal world, what would a therapist’s role be in a PT situation with a disabled child? What would a parent / caregiver’s role be?  What would the child’s role be?

Tonia: I think in an ideal world the child’s role would be more central.  They would be asked (at the very least) how they feel about therapy.  At most, if they want it.  If there is anything they want to learn to adapt / do.

The parent / caregiver’s role would be to support the child’s decision and advocate on the child’s behalf (for what the child actually wants, not what the parent wants for the child.)

And the therapist’s role would be to help the child adapt / learn new skills and help them through things they cannot yet do independently.

Tara: I think a therapist’s role should ideally be to have a full understanding of the child’s disability, to follow the child’s lead with regard to therapy goals, to honor the child’s no, and to help with pain management.

The parent’s role in an ideal PT setting should be to build a close, safe and meaningful relationship with their child, to honor the child’s no, to have open conversations with the child about their feelings about therapy, and to use their privilege if and when the child is not being respected.

In an ideal therapy situation, the child’s bodily autonomy should always be respected. Their thoughts and feelings about whether to go to therapy, therapy goals, and so on, should be carefully considered and given proper weight.

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Thanks again for joining us as we discussed therapy for people with CP in a bit more depth.

Tune in for another 5-post series (different topic) in November!

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Did you feel validated / affirmed by this series?  Which was your favorite post?

Did you learn something new by reading?  What was it?

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