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13 minute read
We hope you’ve been enjoying our summer series on therapy.
So far, we’ve covered
When Everything Is Therapy,
When Therapy Is Chosen For Us and
When Walking Is Overvalued.
This week,
Tara and I will cover When Nondisabled Parents Focus on Milestones. (Additionally, we’ll talk about where parents and doctors fit in if and when therapy is voluntary, how a nondisabled parent’s ownership mentality can impact disabled children and the cultural disconnect that exists between nondisabled parents and disabled children.)
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Ideally, therapy should be voluntary, and disabled people should be able to choose it for ourselves and determine our own goals. Where do parents / doctors fit in here, especially with regard to disabled children?
Tonia: I think the key here is that there needs to be conversation / communication between a parent and the child about what the child wants. And I think that’s often what’s missing.
Tara: Right. Additionally, nondisabled parents will want to seek the support and advice of adults with their child’s disability. The input these adults will have is invaluable. Often, nondisabled parents will be going solely on doctor’s advice. In doing so, it can be easy to miss cultural subtleties within the disability community.
Tonia: I think parents / doctors fit in if it’s a life and death situation. Whatever medical intervention values life is an obvious choice. Beyond that? I feel, frankly, like doctors / parents overestimate their role.
Tara: A collaborative approach (child, parent, doctor, same-disability adults) should be considered with the child’s needs, wants and consent a central part of that collaboration. Nondisabled parents should also consider same-disability adults’ thoughts and opinions as a major part of the conversation.
Tonia: I like the collaborative approach idea, but I can’t help thinking that most of the power would still lie with the doctors and nondisabled parents. When it should be child-centered, and with clear respect for the culture and the disabled adult who’s also consulting.
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Talk about nondisabled parents’ focus on milestones and measuring their kids against other kids as a reflection of their own worth.
Tonia: I think it makes sense, in a way. Nondisabled parents feel a camaraderie with other nondisabled parents. They’re now a part of a new community, and it’s a new part of their identity. They’re finding their footing in this new place and trying to gain a sense of belonging, perhaps.
Tara: It’s only natural to make comparisons. However, it is unfair to measure disabled children against their nondisabled peers. Children learn and accomplish things on their own timeline - and some things will be super difficult or impossible.
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| [Image: A baby in a high chair in front of a number 2. He's holding a spoon and smiling. He looks ready for some birthday cake] |
Viewing a child’s accomplishments as an extension of a parent or caregiver’s worth is problematic but common. Viewing a disabled child’s accomplishments as their parents can have additional impact. (Disabled children used as props in “inspirational” videos that can then further the superparent / burden mentality. Conversely, a disabled child may receive harsh and undue punishment for being unable to achieve nondisabled milestones on a nondisabled timeline - or ever.)
Tonia: Right. The danger comes when a parent’s child is viewed as an extension of that parent and not as an actual human being. Disabled children, in particular, are vulnerable to this.
The danger comes when the parent feels like a child’s progress toward milestones is an achievement they can own, or a cross that they must bear.
Little thought, if any, is given to how this type of ownership mentality impacts disabled kids.
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How does this type of ownership mentality impact disabled children?
Tara: To put it plainly, this mentality can make a child feel like a thing instead of a person.
Tonia: I can only speak for myself, but being raised in many ways as an extension of nondisabled parents (or even a mirror for them) led to many unsafe situations, because of the exact situation you mentioned, Tara.
There were some things I grew up simply unable to do. I shared one in a review of
The Fosters:
Once, when I was around twelve, I was forced to practice walking with one crutch. (I typically used two. But had managed to get pretty good at using just one, assuming there was no pressure and I used the crutch with my left arm.) This time, though, there was considerable pressure. Anger that I had not been practicing enough. So after everybody left the table in the dining room, I was made to stay and walk back and forth.
Nervousness at being watched made my legs and my right arm tense up even more than usual. Which made walking even more difficult. Then, I was given an empty, plastic Tupperware and made to carry that in my right (spastic) hand. The pressure of being watched on top of the motor planning it took to keep my balance with one less mobility aid and keep moving forward, and carry that Tupperware was too much.
I dropped the Tupperware.
Soon after, I hit my knees.
It was just too much to do all at once.
I was pulled to my feet by my hair and screamed at. Blamed, for the way my body naturally reacted to stress and fear.
I don't remember ever practicing walking with one crutch again.
I felt total terror, and gladly fled when I was finally sent from the room.
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Tonia: One might argue, “What does this have to do with a series on therapy? Or ownership? Why are you talking about such awful things?”
Because a child’s grownups do not typically emotionally, verbally and physically assault children they respect and love. However, if they see the child as lesser because of disability, for example, it becomes easier to dehumanize that child.
This is further complicated, because often, disabled children need help for longer than nondisabled children. Sometimes needing help can mean, we are subjected to abuse even as adults.
In fact, I was fully grown when an older adult in my life took one look at what I was wearing (cute jeans and a green university tee shirt) and demanded:
"Why are you wearing that when I just got you two nice new shirts?"
"I already wore them."
"You can wear them more than once!"
"I did. I wore them twice. I sweated all over them."
"You need to dress up. Tee shirts are okay around the house, but when you go out, you need to wear something nice. I'm going to stop at home. You need to pick out something of mine to wear. You're not going out like this."
I thought they were kidding until they literally drove to their house, parked, and I was standing in their room as they took out half a dozen clingy, low-cut, short shirts.
"Pick something else."
"Are you serious?" I asked, still unable to wrap my mind around what's happening. I had an appointment to get my hair cut, not a job interview.
"Yes, I'm not taking you unless you change."
My only option was a bright pink, low cut shirt (because it was the longest one and my jeans were on the baggy side.)
I felt humiliated as a pulled off my tee shirt and put on the other. I never dressed in pink. I felt uncomfortable with clothing that showed I had a shape. But that didn't matter. Because once I was in approved attire, they were happier:
"See? If you just wear something like this - something more form-fitting - you'll feel better about yourself."
I didn't mention that I already felt fine about myself.
The truth was, my changing clothes was not about me at all.
It made the adult in my life feel better about me. I was viewed as an extension of this person and forced to reflect them, even in dress, in order to get where I needed to go.
I was 27 years old, and I still had no choice in the most basic decision: to wear a tee shirt and jeans to a hair salon.
Words can’t really adequately explain the damage instances like this do.
As an adult, I was keenly aware of what was happening, but again, not in a position where I had any power in the dynamic. I had to change clothes. I was dependent on this person to get where I needed to go.
It’s deeply damaging, knowing that adults who are supposed to love you and care for you, instead hate you and despise you. Knowing how badly they want a different child...how much they want you to change...and being unable to.
That futility is terrifying. Because if I cannot be changed, what’s the alternative?
Living in such a constant state of fear is draining.
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Talk a little about disabled culture and about the cultural disconnect between nondisabled parents and disabled kids:
Tonia: The cultural disconnect is huge for disabled kids being raised by nondisabled parents. Because often, the parent is unaware that their disabled child even
has a culture. That we achieve milestones right when we are supposed to (and much more in sync with disabled peers than nondisabled).
Instead, as stated above, disabled children are raised in an unfair situation where they / we are expected to keep pace with nondisabled kids and their milestones...when this is often an impossibility, or, at best, massively exhausting.
Tara: I think, to put a finer point on it, nondisabled parents experience a cultural disconnect with disabled
adults. More often than not, a disabled child will adopt their parent or caregiver’s culture and worldview. A nondisabled parent, who is usually steeped in societal ableism, is less inclined to believe a disabled adult’s experiences are valid and relevant.
As disabled children grow, we have more opportunities to connect with others like us. Oftentimes, this then creates cognitive dissonance for the disabled person. We tend to come to our community later in life. And when you’re the only person you know who has these experiences, it can feel less like culture and more like isolation.
This can contribute to the high prevalence of anxiety and depression in disabled children.
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Where do you feel parents / doctors fit in here, especially with regard to disabled children?
How do you feel about nondisabled parents' focus on milestones and how that impacts disabled children?
