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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, we talk about what happens, as disabled people, when walking is overvalued, whether to let a child with CP do what's comfortable for them, whether it's possible to 'nicely intervene' regarding a disabled child's natural gait, and the stunning level of medical trauma kids with CP experience because surgery (like therapy) is often chosen for us. Because children cannot consent to medical intervention.
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Where is the line between getting kids adaptive equipment / accommodating them, and walking?
Tara: Walking is overvalued. It is seen as a major milestone in development. One that is recorded, shared and celebrated by family and friends. There are those of us, however, who can’t walk without mobility aids. There are those of us who can’t walk at all. And, because the social norm and expectation is walking (unassisted), it is often the case that kids with disabilities are forced into this less-stable option - with the least amount of support or accommodation possible.
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| [Image: Tonia, left, and Tara, right, in yellow overalls, being held up, unsmiling. We were posed for a number of these "standing" pictures before either of us were able to stand or walk.] |
Walking is seen as inherently good. Inherently healthy. And yes, there can be many benefits to walking. It is also true though, that walking can be all-consuming. It can be exhausting. It can even be dangerous.
So, where is the line between walking and adaptive equipment? Walking is socially accepted. Oftentimes, it is cheaper (even if braces, a walker or crutches are required). And walking also alleviates the pressure of trying to acquire accessible and affordable housing.
A wheelchair means a major life change. Particularly if it will be a child's primary way to be mobile. Because of this, if a child is physically able to walk, a wheelchair is often seen as a last resort or even as a depressing failure.
However, I think that a child's needs, pain levels, exertion levels, overall stability, as well as their ability to actively participate in and enjoy life should be taken into account when considering mobility devices. There is no one-size-fits-all option. It should be about the child's comfort and safety first.
Tonia: I think the line is, “Are you willing to accommodate them?”
Not all babies can physically learn to walk. Those babies have to be accommodated in order to get around at home. More often (and less discussed), there are babies and children who do have some ability to ambulate on their own.
These babies are often put in PT very early with walking (with or without adaptive equipment) as the goal. No matter how exhausting walking might be for that baby / child.
Until I moved into accessible housing at 24, every single place I lived was inaccessible. I believe I was put in therapy and pushed toward using crutches so that I could navigate these inaccessible homes. My walker was too wide and I was not able to use the stairs with it. I got my first wheelchair just before I turned 8. It was never allowed in the house.
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When a young child has CP gait (for example), is it best to just let them do what’s comfortable for them and deal with any issues that develop later?
Tonia: In a word? Yes. Otherwise it feels like every aspect of our lives is monitored and / or critiqued. (See: When Everything Is Therapy)
Tara: I think that toe-walking comes as naturally to those with CP as nondisabled gait comes to nondisabled people. It would likely feel fundamentally wrong to be forced to walk in an unfamiliar and uncomfortable style, which is often what can happen when physical therapy is not consensual. This is when we can begin to feel as though we are wrong or flawed.
Usually, I think we as adult humans will seek to address orthopedic issues specifically as they become painful to us. (This is assuming these issues are not also life-threatening, of course.) I don't think it should be so novel to consider that the same consideration be given to disabled children. Address an issue if it's causing physical or emotional pain - either through consensual PT or another consensual medical intervention. (Consent should be given by the child as well as the parent, as soon as they're able to understand the options, with the child's consent being of paramount importance.)
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How do you explain / intervene nicely about a child’s CP gait, posture, or natural way of sitting? Do you expect this of them only in therapy? Is there a balance to strike?
Tonia: Does anybody intervene about nondisabled kids’ gait, posture or natural way of sitting? No. It’s respected as comfortable or stable for them. Not something that is commented on or picked apart.
Kids with CP W-sit because it provides us with a stable base. When I was a toddler, I was routinely picked up from a W-sit mid-activity, set roughly on my backside and told to, “Sit right.”
(The implication, then, is that how I naturally sat was wrong.)
But sitting the way nondisabled kids sat (with their legs in front of them, or crossed made me feel inherently off-balance and I needed to steady myself with my hands if I sat that way. Which made playing, or any other activity, near-impossible.
There is always a way to interact with your disabled child short of handling them physically. I’d advise, in fact, to let them play. Let them be kids. Otherwise, they grow up hypervigilant of themselves and their bodies, never able to feel at ease.
With nondisabled kids, interventions only occur if they are in a lot of pain or injured. If a kid with CP is not experiencing chronic pain, or otherwise injured, let them play. Deal with any outlying issues as they arise, just like you would a nondisabled child.
Tara: I suggest checking on pain level or discomfort regarding your disabled child’s body. Then, gently suggest alternatives to potentially alleviate pain / discomfort. (Please do not blame.)
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Therapy and surgery often go hand in hand for disabled children, who cannot choose their own medical interventions. This lack of choice contributes to a stunning level of medical trauma in the disabled community. Talk about this:
Tara: I’ve endured both life-saving and what might be called elective surgeries. And while both types sucked tremendously, there’s something extra horrible about not being asked for your consent before an elective procedure or surgery. That sense of powerlessness is all-consuming. And that lack of choice, that lack of control is just another facet of compliance culture that makes disabled kids particularly vulnerable to abuse.
Tonia: Like Tara, I’ve experienced both life-saving and “elective” surgeries. All three of my life-saving surgeries (experienced at 5 days old, and 4 months old respectively) were performed with the aid of paralytic drugs but no anesthesia as was the custom until 1987 on babies 15 months and younger.)
For the most part - if it isn’t a life or death situation - adults get to choose whether or not they consent to surgery. Children with disabilities (even adults with disabilities sometimes) are not given the same options.
Where, for adults, surgery means one incision, which you take time to heal from, often kids with CP get two or more at a time, starting at very young ages. I got my first multiple-incision surgery when I was 3 years old. When I was 10? I had to somehow cope with the torture of having been operated on 13 places at once.
Related: When I Wanted a Magic Nursery Holiday Baby To Magically Take Away My Surgery
No adult would consent to themselves being operated on in this manner - having more incisions than they have fingers on their hands. Being cut open from waist to feet. But often these types of surgeries are recommended for disabled kids.
One surgery (with a single incision) is traumatic for a child with a disability who did not consent. Now multiply that by two. By eight. By thirteen.
Disabled kids have no power in these situations. We’re forced into sterile rooms while we’re crying or stuck in a freeze response or just doing our best to deal, and then we’re poisoned to unconsciousness, so that our bodies can be cut into.
For what? So we can put nondisabled people at ease?
Is it any wonder that when I was asked (for the first time) if I consented to an orthopedic surgery at age 12 (to fix a surgeon’s mistake), I said no?
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Where do you feel the line is between getting kids adaptive equipment / accommodating them and walking?
Do you feel a lack of choice regarding surgery (and therapy) plays into a stunning level of medical trauma for people with CP?
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