Summer Series 2020: When Therapy Is Chosen For Us

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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

This week, Tara and I are unpacking whether or not there’s a place for therapy with regard to disabled people.  While this is entirely subjective as disabled people are not all the same, we definitely had something to say on this topic, among other things.

So, feel free to join us as we discuss that, as well as whether therapy can be done without suffering, what progress in therapy looks like, and if there’s a way to do therapy that loves, honors and respects disabled people.

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Is there a purpose / place for therapy?  If so, what / where?  If not, why not?

Tonia:  I think there can definitely be a purpose to therapy for people with disabilities.  But I think what is missing in a lot of people with CP’s case is the element of choice.

We often don’t choose therapy.  It is chosen for us.

I think therapy can absolutely be beneficial if it is something that the individual wants and chooses.

Even as an adult, though, I’ve had experiences where PT and other painful medical interventions have been pushed on me.

I shared with someone how I’ve finally found exercise that works for me, and they immediately tell me I should go get PT instead.  “That would really help your pain.  They know all about people with CP and how to help you.”

(I heard: “I don’t care about the ways you’ve found to deal with your own pain.  I want you to cure your pain with more pain.”)

I struggled to get in a dangerously inaccessible house, and I was blamed.

Days later, an email came [paraphased]:

Have you thought of going to a PT clinic and / or getting Baclofen?

(I almost blacked out at that one.)

Tara: There is absolutely a place for therapy. Therapies are not inherently wrong. However, their basis in the medical model for disability makes them oftentimes problematic. The medical model for disability assumes that disability negatively impacts quality of life and looks to various medical interventions to diminish or correct the disability.

In general, as long as a therapy is based in respect and consent of the patient, I think it can be helpful with regard to pain management, specific skill-building or adaptation, or injury / surgery recovery.

Tonia: Yes. If it’s chosen by the individual, as something they want to pursue.  If a person wants to look into therapy as a means to manage pain, or to learn a new skill, or for help learning to adapt.

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Therapy sometimes does work for disabled people - we recover skills - but at what cost?  Can therapy be done without suffering?

Tonia:  As a child, I called my PT my “exercise” because I had to do a series of exercises - especially post surgery - that took most of an hour.

I think the benefit of low-impact exercise for those with CP cannot be overstated.  Often, it does seem that the motto of therapy-based interventions for people with disabilities is that it has to hurt to be effective, but it really doesn’t.

I’ve found that pedaling / biking (done after I shower so my muscles are looser) daily for 15 minutes keeps me active without overwhelming my body.

Tara: Ooh, that’s a loaded question. Because if PT is forced, if it is consistently painful, if it is not chosen, if the inherent goal of it is to correct your identity, then we are not only enduring physical suffering. The psychological pain of this cannot be understated.

Tonia: Oof. There it is.  I think you make such a good point about the psychological pain that (constant forced and painful) PT can cause is such an important one.

Tara:  That being said, I definitely think finding gentle ways to move and stretch is helpful and can alleviate pain. I do not think that PT for kids with disabilities currently exists without harm of some kind.

Tonia: I’d agree.  Not at this time.

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[Image: a white outline of a person against a blue background at the beginning of steps toward SUCCESS]

What does progress in therapy look like?

Tonia:  It depends on who you ask.  I think for me, as a disabled person, progress would have to be personal.  Am I learning ways to adapt?  Am I figuring out a new step to accomplish a skill I’d like to learn?  Are my exercises helping manage my pain?

(To be clear, all the above questions I posed are hypothetical ones.  I never learned to adapt.  Exercises caused pain, never mitigated it.  And I rarely accomplished a skill I really wanted to learn…)

Tara: Honestly, this question has completely thrown me. Because while I understand what it is asking, the idea of progress in therapies for people with disabilities implicitly states that as we are, we are not good enough.

Related: When Everything Is Therapy

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Is there a way to do therapy that loves and honors and respects people with disabilities as human beings and does that make it better?

Tonia: I’m a firm believer that there is a way to do every darn thing in life in a way that loves, honors and respects people with disabilities, including therapy!  And absolutely, it helps.

Tara was responsible for stretching me when we were kids and I always preferred having her do it to a therapist or anyone else, mainly because she also has CP and knew how it felt to be stretched beyond what could be tolerated.

Tara: This is a super loaded and complicated question. I think anything is possible. But I also think that the medical profession needs a complete overhaul when it comes to the care of people with disabilities.

This overhaul would need to take into account not only societal ableism but personal biases regarding race, sex and class as well. Starting with the assumption of agency, we can then begin to build a system that respects disabled personhood. This system would highly value consent of the disabled individual (child or adult) at every step of the medical process, including therapy.

We start by hearing and honoring no. By respecting limits. By seeking to mitigate pain instead of instigating and sustaining it.

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Do you think PT can be done without suffering?

How do you measure progress in physical therapy?

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