Susan Senator

There we stood, Ned and I, just behind the line of the football field at Nat’s Special Olympics championship games. We were frowning a little, then smiling, then grimacing. We had layers and layers of sweaters and coats on to guard against the raw gray air. This wet cold seeped into every thing, even though it was not raining.

Play after play Nat dropped the ball or didn’t even try to catch it, walked slowly up and down the field, and stayed away from the other team. He’d be subbed out and would smile, so I knew he was enjoying himself. But he sure does not understand the game, or what he is expected to do with the ball on any level.

Ned’s and my frustration stung as we watched his one-on-one — a unified (i.e., non-disabled) player — just kind of talking to him in a normal voice, too many words. Might as well have been French or Hindi. Nat just will not process that kind of stream of sentences, it just roars on past.

I don’t want to feel this way, this tiring tug downward. But I did. One of the parents kept catching my eye and splashing me with sympathy. I gritted my teeth and gave nothing back to her. I. do. not. want. your. messy. pity. Pity can sometimes make the other person feel shame. God damn her for making me feel shame.

Then it dawned on me. Nat is pretty much the most disabled person on his team. Yes, it’s true. The rest of them can talk, can understand the basic rules, and most importantly: they understand what they are supposed to do and they want to do it. Their comprehension buoys their motivation.

I realized next that Nat is likely among the more disabled people in Special Olympics. The diagnosis of Intellectual Disability can mean you are only slower to process, or perhaps your language is affected and hard to understand. Maybe you have Down Syndrome and so much of your disability is physical or about delays. But your social powers in all of these cases are still intact. I don’t know enough to state this empirically but I know what I see. Even those who appear very very disabled in how they move or how their faces are arranged, or how they sound, they are still able to be a teammate and they know there are rules and roles in the game. I don’t think Nat is at that level.

For some time now, I think I had forgotten about Nat’s disability. Not on the surface, but kind of deeper down. You would not have noticed. The slogan “Presume Competence,” puts forth an attitude I’ve long worked towards. Now I’m wondering if it can go too far. All Nat’s life, he has tried and tried to do what is asked of him, and he has learned over long periods of time what to do in so many areas of his life. It is not about his ability to actually do the thing, execute the task.

Nat’s disability, the black hole at the center of it, is that he does not realize his part in things. He does not realize what is behind getting the laundry up from the basement or unloading groceries for me or going on a walk to a favorite destination. What is behind these things is will. Free will. Nat does not understand in the most basic way that he can be the origin of an action, a conversation, a want, an idea.

He does not know that he is the master of his own life. Nat’s disability lies in a pathological passiveness. Not laziness, not intelligence, not physical know-how. But generating original action. That is what he struggles with the most. So it really hurts when people say, “Maybe you should show him how to type.” Or “Maybe stop prompting him.” Or “put up pictures and lists telling him what to do next.”

It hurts that people do not understand my biggest failing as Nat’s mom: I do not know how to teach him how to do things for himself because the very nature of teaching him what to do is that he learns it still hooked to my teaching role. He does not detach his own desires and acts of fulfillment from me, and others. It is a terrible paradox. I cannot say, “Nat if you want to eat, you can eat,” because to him that means “Nat, you can eat now.” The “if you want,” is cloaked behind something in his mind. It’s just like Who’s on First, but it’s not funny. It makes me so sad. It’s like when I could never teach him the correct pronouns, either, for similar reasons. I can’t say, “No, Nat, it’s not me who wants it, it’s you!”

“You want it.”

“No Nat, you mean ‘I want it.’ You, not me!”

“You want it.”

I want it. To get better. But will it? Can he make this leap, across that giant field?

Does he have to? If this is his disability, this is his disability.

But I think he wants more power in his life. I think he knows that he is on the sidelines, even in the game.