M. asked me a question as I was tucking him into bed, just prior to our reading time. "Am I disabled? Or am I a child?" The form was deceptive. It was framed simply. It was not a simple question. It was profoundly philosophical. Of course I was taken aback. But, it was an honest question. He wanted to know. Identity is important. “You are a child. And you have a disability. You will always have to work around it. Like you do with your art.” That was enough, for the moment. It was sufficient to settle whatever had been nagging his brain, pulling at his heart, enough to make him ask mother.
Sometimes he will ask silly questions. Questions for which he obviously knows the answers. Those are the “mastery questions,” the “start a dialogue that is a familiar game” questions, the “annoy mom” questions. For the silly questions, a good solution is to turn the question back such that he must answer it himself: “What do YOU think that blah blah blah blah blah...?” Said with a smile, but not a sentimental one. Even if the annoyance bubbles up, he wants the conversation. If I manage myself, the conversation will change soon enough. I can gently steer it. He already knows that I will do that. Lord knows, I have done it many, many times. Am I skilled? Or am I trained? But this digression deflects the depth of his question on this particular evening. He recognized his own implication in a constructed dichotomy: disabled/child.
KosAbility is a Sunday 4pm(Pacific time) community series by volunteer diarists, as a gathering for people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent conditions, from small, gnawing problems to major, life-threatening health/medical problems. Our use of "love someone" extends to beloved members of other species. Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you are interested in contributing a diary, contact series coordinator postmodernista. |
M. apparently knows the rules of culture. Night/Day, Male/Female, Young/Old, Country/City, Disabled/Child. Was he taught this last one was a dichotomy? When, and for whom is it a dichotomy? Did I teach it to him? What about at school? The other kids, the non-disabled ones where he was “included” in the same geopolitical space of elementary school? Or did he recognize its construction for himself? Asked, and answered. You don’t play ball well enough. You don’t play by the rules. You can’t figure out by a fleeting facial expression what someone is saying. You don’t belong here.
A little girl actually said the last, loudly, to his face. We were doing an off-campus play-learn group. I was really hopeful about that group of parents and their children. These were all kids he already knew from school, and they knew him. It would eliminate the awkwardness of ad hoc situations at the playground, trying the mix-and-match on the fly. Chatting with parents. Being positive. Sometimes a phone number. Hopefully, one of the rare return engagements.
But, whatever positive thoughts I was bringing to the play-learn group from school on that Saturday were immediately dashed by the princess of the home. Before M. even set foot onto the second floor to join the gathering, she leaned over the top of the stairs, saw him, and shouted, “You don’t belong here!!” Right, then.
Of course, she was gently corrected. Sort of. “Darling. That’s not a nice thing to say. M. is from your school.” And that was all. There was no asking why she said what she did. And no opportunity to dispute what she really meant: that he was of the community from the school, but not part of the one in the house that afternoon. In him, she saw no peer. Frankly, neither did anyone else, neither adult nor child. She just said it out loud, right away. Disabled is not a child. Not a child that belonged here. Oh, sure. Ambulatory. But fidgity. Bad at circle time. Doesn’t pay enough attention. Needs someone at his elbow every minute to help him. And that eye. What’s the matter with that? Oh, she didn’t mention that on that day. But on another day, another child had.
We were at the playground and M. was enjoying the tire swing. And then he jumped off and went running to the structure. And then this one little boy arrived right behind him, and had a beautiful scooter. The little boy left it and went to do something else. So, M. looked at it. I was 10 feet away, making certain that he could not cause massive offense by taking it to ride. And he never did. Didn’t even touch it. But he looked.
The little boy returned to make certain that there was no inappropriate claim upon his prized property. And then he shouted, “WHAT’S WRONG WITH YOUR EYE????” Just like that. In ALLCAPS. Bold. San Serif. I looked to the mother, aghast. And pretty bugged, but you cannot call out a 4-year old kid at the playground. You can, however, give his mother “the look” with a cocked eyebrow.
“Oh.... he’s just so CURIOUS...” she said, limply and not all that apologetically.
“It did not seem like a very curious tone” I flatly replied, to no response.
On other occasions, I had explained, very patiently, about the condition, and what gave rise to it, and the fact of his lack of sight in one eye. The blank gazes of this mother and the small gaggle about her made me pause this time. Then, yielding to the silent demand for an explanation of the difference that caused a ripple in the playground space-time continuum, I started to go into “educational mode” again. But this particular time I devoted rather less expression to the details because, well, what is the phrase? Yes. “Mean curiosity.” I had always thought that an odd idiom. But on that day it brought thunderous epiphany. It was created because of that particular combination--wanting to know because of wanting to know, but not caring. Just mean-spirited curiosity of the “why aren’t you normal, wait, I don’t really want to actually know the science of it” stamp.
The mother did not pursue any further conversation with me when I finished the brief educational exposition. Was she embarrassed? Not enough to apologize, certainly. She explained. Her son was “just so curious.” Ah. A budding physician.
Budding Physician followed my son relentlessly as he retreated to the relative safety of the tire swing. Staring at my son and his offending eye. Finally, perhaps sensing my inner combustion, his mother called to him and redirected him to another activity. Not long afterward, he returned and then set about climbing the geodesic rope structure next to the tire swing. I sighed inwardly. A manly display for my son’s further edification as to his not belonging?
“MMOMMMMMMMMMMMMMMMMMMMMMYYYYYYY!!!! HELP ME!!!!!”
The mother appeared, and with some effort plucked Budding Physician cum Errant Climber off the structure and set him down. Without a word and quick as a flash, my son was off the tire swing, up the dome, on the top and down the inner portion of it. He came to me, took my hand and began to guide me toward the playground’s gate. He was ready to leave. I whispered in his ear “I am so proud of you. You are very wise. You taught me so much today. You gave that boy the best answer. You showed him that you could do something that he could not.”
That day, at least, in his own mind, my son erased the dichotomy that so many around him were relentlessly creating. But that dichotomy is nonetheless there. And needs to be undone every single day. Like the stone in the story of Sisyphus, repeatedly and forever pushed up the mountain, that dichotomy that should not exist is there, a burden.
Am I disabled, or am I a child?