What Having a Disability Taught Me About Bodily Autonomy

Editor’s Note: Today’s post is a guest post from Rose B. Fischer that kicks off our Feminist Friday postings here at Part-Time Monster. The weekly posts will aim to generate conversation about feminist issues, paying particular attention to intersectional issues. I am incredibly honored to have her posting here about such a deep and personal topic.

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.

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.

And, 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.

My purpose in writing this is not to villify 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.


Rose B. Fischer is an avid fan of foxes, Stargate: SG-1, and Star Trek.  She would rather be on the Enterprise right now.
Since she can’t be a Starfleet Officer, she became a speculative fiction author whose stories feature women who defy cultural stereotypes.
To support her artistic habits, Rose has a paying gig as a Digital Creativity Consultant. She works with female and nonbinary creatives to help build powerful online presences that remain in line with her clients’ artistic visions.
You can find her on The Evil Genius blog.

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Comments

  1. djsheala says

    I came thru similar story.

    Now I have a better tool for thinking about my experience. Because I was afraid, that I will be labeled that I hate physical therapy and that I say I was abused because of it. (I was).

    Feeling better now though. Thanks for the article, it is so beautifully written and smart and everything.

    I am sure that my overworkings are connected to this stuff too. I mean how I struggle in university, how I feel I cant stay today it was enought of writing or “decompressing my PSTD”. Can we perhaps get in touch? My email is in the email field of comments, so feel free to write me, if you want.

    Psychology student (and horrible dropout) and a DJ, but still struggle with being forced to exercise even I cant.

    Liked by 2 people

  2. Meredith says

    So, as the parent of a a girl with CP, who is very much concerned about body autonomy, I want to know what I can do to help my daughter gain agency over her own body. Any suggestions?

    Liked by 2 people

    • says

      The main suggestions I have are the kinds of things I discussed in the post.

      Explain WHY things like therapy are important and allow your daughter to have a voice in deciding when/how much and what the goals of therapy are.

      If she needs assistance with ADLs, then involve her in the process of deciding who her carers will be and make it clear that she can say “no” at any point, even if she hasn’t done so in the past.

      Beyond that, it depends on the specifics, and I’d say that the person to talk to about it is your daughter.

      Like

    • says

      As a friend of someone with CP I am well aware of the issues regarding bodily autonomy. I really love this post in general, its touches on a lot of issues. I agree completely with Rose’s suggestion. Another thing that is often an issue is that people seek to ‘control’ the body of someone who cannot fully control it themselves.

      With my friend, it is very important that she is the decision maker. She decides who can perform certain physical care tasks, she decides who hugs her, who holds her hands, etc. Work to help your daughter grow in confidence to make this clear to others, whether verbally, through a speech device, or whatever works best for her. Encourage her to tell you if something happens that makes her feel uncomfortable or was against her wishes. Always listen, always communicate.

      Liked by 1 person

  3. says

    Thanks for sharing, and caring. I also spent a summer in a cast from hips to toes, with a bar connecting the heels of the cast. I looked like a great big peace sign without the circle. I was born with dwarfism, and there was always this pressure from doctors, and family members, that I should be able to walk without a cane.

    As I grew older, I ditched the “cane shame” imposed by those around me. “What’s the big deal?” I thought to myself, “people use tools all the time, my cane is a tool that lets me do more, walk farther than I can without.

    Nowadays, at the age of 53, I also use a hiking staff when I’m outside. It helps me keep up with wife, and 7 year old daughter. If and when I resort to an electric scooter to live an active life, I will feel shame either. People drive cars all the time, and no one ever shames them about THAT mobility device.

    Liked by 2 people

  4. says

    Whoops, had a major typo in the last paragraph of my comment: “If and when I resort to an electric scooter to live an active life, I will NOT feel shame either. People drive cars all the time, and no one ever shames them about THAT mobility device.”

    Liked by 2 people

  5. says

    I can relate to everything you’ve said here, Rose. We are products of a system that sees impairment as problematic rather than the roadblocks created by society. But it’s up to us all to fix that! (Sarah Fitzgerald, wobblyyummymummy.com)

    Liked by 1 person

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