Coming to terms with disability

The interaction between individuals and their environment

As someone with multiple conditions that can be disabling at times, I would think it would be easy for me to wrap my head around the concept of disability. But I find I struggle with the idea of "disability" both when I think of myself and now when I experience it in my daughter. I have to remind myself that disability is relative to the norms and expectations of society. I appreciate the World Health Organization description of the term:

"Disability results from the interaction between individuals with a health condition... with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support."¹

Disability comes from the interaction between individuals and their environment. If my daughter can't do the things that are typically expected of a child her age, is it a reflection of her ability or is it a reflection of a flawed societal expectation? I used to hope I would never have to ponder this question. I've learned slowly that it's easier for me to get on with life if I follow the norms than if I try to push against them. I pushed and pushed for many years; it's exhausting, and alienating, and just hard. I reached a point where I learned to adapt, or mask, in different situations in an attempt to appear less weird, or to avoid having to explain myself, or to risk the awkwardness of admitting I don't get it (whatever it is that everyone else seems to be bonding over).

When I was just out of college, I worked with children and adults who had disabilities so severe they were taken out of society and put into institutions or "special" schools. They spent their days being trained to comply with the expectations of the staff, being rewarded for being "good", and being punished when they were "bad". Kids were restrained, put in small "time out" rooms by themselves, told that they should know and do better. Adults were infantilized with ticket systems and sticker charts that are commonly used in elementary schools. The terms used to describe people would change periodically to meet the current favor of society, but I'm not sure who those changes were meant to appease (disabled person vs person with a disability vs differently abled, etc).

Our daughter has always needed things that it seemed like other kids her age didn't need. She is strong willed, determined, and has always known what she wanted. We watched other parents impose boundaries and hold fast to them, and we saw that seemed to work for other families. I heard other parents say things like, "If we don't clean up after we're done playing then we'll lose privileges", and their kids cleaned up! What are these magical "privileges" that other parents speak of? I saw other kids given plates of balanced nutrition for lunch, and witnessed them trying everything on their plate, eating the healthy food before the dessert, and not questioning or doubting this process at all. Our daughter, on the other hand, would insist on ice cream before even thinking about allowing us to present any other options, and if we hesitated for even a moment she would tear into a vicious rage that felt endless and beyond her control.

Our daughter has always expressed her needs strongly, but I didn't see them as needs. I saw them as preferences, or quirks, or in some cases wrinkles to be ironed out. We don't eat dessert first because we just don't - kids can learn things like that. After one extended and particularly intense meltdown at my mom's house resulting from my insistence that my daughter wait until after dinner to have her ice cream, my aunt finally looked at me and said, "I'm surprised you haven't given in yet." I was trying to be a "good" parent - holding the line so that our daughter would learn. My aunt's comment made me wonder, though - why does it matter when she eats dessert? Is it worth having her scream, cry, kick, push, and roll on the floor in a state of complete dysregulation for over an hour?

What we have observed is that setting boundaries and holding them, using rewards and consequences, and other tools that motivate compliant behavior, simply don't work with our daughter. The more we tried them, the harder things got. The resistance was stronger, the meltdowns were more severe. "Defiant" was the word used by therapists, psychologists, and psychiatrists. It didn't feel like defiance to me, though - it felt like something deeper and less conscious. I wasn't convinced that she was choosing her behaviors. The typical parenting advice had us continuing to hold the line, with the promise that it would work eventually. It never worked, and our daughter finally hit a breaking point.

I call the breaking point burnout. It started with adamant refusals to go to her summer camps and programs. Then insistence on more and more screen time. Then a marked reduction in the (already small) variety of foods she would eat. Then an inability to get out of bed, or to bathe, or to brush her teeth, or to comb her hair. Then a reduction in communication - our daughter currently alternates between screaming demands for us to bring her things while she lies in bed on the iPad, and communicating in a cat language (mostly hissing) that seems to to make sense to her but is completely incomprehensible to us. The change from what looked to the doctors like defiant behaviors to what looks to us like a dysregulated and disabling state completely out of her conscious control, was rapid. Looking back, I can see the slow development of it over years - the mounting stress of the demands of life building and building until her body and still developing brain couldn't take any more. But I can only see that in retrospect. It wasn't until she hit this state of burnout that I could clearly see that whatever is going on with my daughter is not normal childhood boundary testing or defiance, it is a reflection of her neurotype that makes her disabled when faced with the expectations of our social system.

Our daughter's burnout has started us on a journey. I suspect it will be a long one. We need to find a way for her to live in the world that doesn’t cause her activation and dysregulation. She needs a sustainable path. I know she can thrive, she just needs to be able to take care of her needs, set her own limits, and make her own choices. It’s not unreasonable, but it can feel unreasonable in the face of everyone else’s expectations.

1. See: https://www.who.int/health-topics/disability#tab=tab_1