Feminist Friday 2018 #3: What Having A Disability Taught Me About Bodily Autonomy

Editorial Note: This post was originally published on Part Time Monster in 2017.  It’s my work, and I’m republishing here with permission from the original host.  Post contains some discussion of sexual violence.

 

I was born with cerebral palsy.  I have limited use of my legs and my lower leg muscles are basically nonexistent.  When I was three, neuromotor specialists began recommending a daily routine of physical therapy to help maintain my level of mobility.

The exercises I’m supposed to do feel like someone is trying to rip my legs apart on a medieval torture device.  As a toddler and young child, I was never given an option to refuse this treatment.  I have no memory of anyone explaining the benefits of this therapy.

I was told I had to do my exercises.

That’s it.

When I was about six, my mother and therapists decided I was old enough to do them unsupervised on the days that I didn’t have PT appointments.  They taught me alternate stretches that I could do without an adult present, and I promptly ignored them.

And I got yelled at.  Repeatedly.

“Are you doing your exercises every day? It doesn’t look like you’re doing them.  You know we can tell if you do them.  Don’t lie.  If you don’t do them, you won’t be able to walk straight.  You’re supposed to do those exercises.”

Eh.

I am nothing if not stubborn.

I knew that I was being “bad,” and I wanted to walk.  All of the adults in my life were determined to keep me walking rather than fully dependent on a wheelchair.  So, I came to see walking as “good” and using a wheelchair as “bad.”  But I also wanted to read books, play the same games that my cousins played, and–here’s a shocker–I wanted to avoid causing myself excruciating pain.

So, I didn’t do the exercises until/unless I was actually pain without doing them.  When that started to happen, I figured out how much therapy I really needed to do in order to move without pain the rest of the day.

But that didn’t satisfy my doctors, who wanted to see improvement in my gait and muscle tone.  It didn’t satisfy my parents, who wanted obedience when they told me to do those exercises.

The older I got, the less anyone would tolerate resistance.  I was “old enough to know better.”

Better than what?

Again, no one had ever explained the benefits of the therapy.

Bitmoji-Srslry

I learned that on my own. I made peace with the pain, and I decided what I was willing to live with in order to have the level of mobility I wanted.  “Improvement in my gait and muscle tone” did nothing to improve my quality of life.

I was old enough to grasp the benefit of physical therapy but not allowed to decide how that benefit should apply to me or how much pain I would allow myself to be in every day.

Then came the surgeries and long months spent in plaster casts that went from my toes to my hips.  (Usually in summer so that I could avoid missing school.)   My mother did start letting me decide whether I wanted those, and I agreed to them primarily because I trusted my surgeon and wanted his approval.

What I did not agree to was being sent home from the hospital with no nursing support and having to rely on my father to help me in the bathroom while my mother worked.  No one asked me whether this was okay with me, whether I trusted him, whether I wanted him to see me half naked several times a day.  No one offered me an alternative, and I didn’t know that I could say “No.”

That’s what I learned, growing up.

Compliance.

Obedience.

“No” is not an option.

Unlike many children with disabilities, I was able to ambulate and complete my activities of daily living with relative independence.  There are other children who rely on parents and caregivers for their physical needs on a daily basis.  Yet I almost never see discussions of bodily autonomy, choice in care providers, or issues related to gender and sexuality for people with disabilities.

 

Bitmoji-Diversity 3

My purpose in writing this is not to vilify my parents or the medical establishment, nor is it to argue that we should abandon physical therapy and make no effort to manage neuromotor problems.  It’s to point out the disparity between how children with disabilities are treated versus adults, or even nondisabled children.

The situation is complex.  There are no easy solutions.  Children will almost always opt to avoid doing things they don’t like.  Bath time, bed time, turning off the television, taking medicine for an illness.  Caregivers need to enforce rules and boundaries for their protection.  Sometimes they need to make sure that medicine gets taken, and the same can be said for PT.

My school had special “talks” and presentations by local law enforcement about what to do if someone “hurt you.” I knew the difference between the kinds of touching that we learned about in those talks and the things I experienced connected to my disability.

And yet, I was sexually abused by multiple adults throughout my childhood.
Am I saying it happened because I was forced to do PT exercises? No, that would be a ridiculous oversimplification, and a profound insult to the intelligence of my readers. 

But I made myself “okay” with the abuse by using the same coping mechanisms I learned in order to deal with having no control over my body, no self-determination in how or when therapy would be administered, and no right to say “no” when things hurt me or made me uncomfortable.

Disabled children are 3 times more likely to be abused than their nondisabled peers.  They’re more vulnerable, more dependent on adult caregivers for their physical needs. We do a piss poor job of teaching any child about bodily autonomy, self-determination, and consent.  We actively and systematically teach disabled children that they don’t have any of these things in the first place.


Feminist Friday posts go live on this blog every other Friday in 2018.  The main topics are rape culture, disability, and LGBTQ intersections.

If you benefit from my feminist work, you can support me by leaving a tip.

3 thoughts on “Feminist Friday 2018 #3: What Having A Disability Taught Me About Bodily Autonomy

  1. Pingback: What Having A Disability Taught Me About Bodily Autonomy – Angry, Artsy Feminist: Essays

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s