It’s a bit chilly for spring but that may be because it’s still a bit early. Many of the stores are only starting to open. The sales are calling to us. It’s such a nice day and I thought the fresh air would do him some good.
It’s not yet summer, the rainy season, when a damp stiffness seeps into your joints, making movement feel like annoyance. It’s also not winter anymore when it’s so cold everything in our bodies freeze and movement becomes beyond impossible. I’m holding the grips on his chair as tightly as I can. But even my grip isn’t so good these days. Even that seems to be deteriorating. Who will push us? Will they even allow us to wander the Hondori, me chattering away, him listening and inclining his head to show his opinion?
Oh, I’m sorry. He is my grandson, my first grandchild. And he is disabled. He specifically has Down’s shoukougun, the doctors said when his hands wouldn’t unlock. No grasping reflex that could be easily displayed. I was there when he was born early. His mother, my daughter, passed out, a difficult birth. I saw him and was shocked, put off even. I harangued my daughter about what she had done to cause this. I’m embarrassed now by my almost reflexive disgust. But in my day no one saw that. No one talked about it. You’d catch a glimpse in a screen on your way to school or there would be gossip but, sadly, people with disabilities like my grandson were unseen. Spoken of, but not seen. None of us knew what to do. My son-in-law’s mother joined me in asking what my daughter had done. I can’t imagine how she felt. How she still feels. We were ignorant. In these cases, the blame always falls on the woman. Even when doctors say it isn’t her fault you can still hear it in their voice. I wonder how she bore it?
Or you can see it in the eyes of people as we walk past. Some stare and some try aggressively not to see. I can imagine they have a million questions, but we don’t feel like devoting too much of our attention to them. Let them think. If they bothered to learn, they’d see him as I see him.
No one listens to me anymore in my family. I like to talk and tell stories but everyone seems so put off by this. It’s always “hai hai okasan” not even able to repeat what I said. But I noticed one day from his chair that he was looking at me with an intensity in his eyes that he understood me. Until then, I’d been embarrassingly like most people. I’d figured he couldn’t understand language so I talked over him, about him, like he wasn’t even there. I’d assumed that because he couldn’t speak he couldn’t understand. He must have been about 3. I started to sing to him, watching his face react to mine, to my music. I’d tell him stories my mother told me. I would try to hold him. I would smile at him. My daughter, still heartbroken, still blaming herself was more than happy to let me take him. She was worried she would break him if she touched him and I think she feels him reproaching her for “making” him this way when she looks at him. But he has no such malice for her, for anyone. He’d place his usable hand on my chest and feel the vibrations. He still does when we laugh together. He was a happy and quiet baby who has grown into a happy and somewhat quiet child. It would make me, and still does, angry when we get on a streetcar and mothers with children screaming their heads off glare at us, sitting quietly and respectfully in our allotted space as though we were the ones creating a disturbance.
I know these looks embarrass my daughter and her husband and they will try to “correct” some perceived offense. As parents they feel disapproval very keenly. I get mad. If these people bothered they wouldn’t see some “ugly child in a wheelchair who is probably an idiot who has to wear a diaper! (at least when we go out. I can’t toilet him alone)”. They could educate themselves, they don’t have to live in ignorance but they want to. If they really looked, saw my speaking and his listening, the give and take, the real communication that we have, they would understand. If they saw the boy who will look at old lady’s clothes and tell me if blue is really my color, who treasures our interactions, then maybe, they would not stare. Maybe then my daughter would be proud of her son. Maybe then I wouldn’t have to worry about what would happen to my grandson when I leave this world.
Shoukougun- The syndrome part of Down's Syndrome. Down's is written in katakana.
Hai hai okasan- “yeah yeah mom” hai hai can be a way of fobbing someone off.
I’ve only read a bit about the changing state of special education in Japan. Modern Japan seems to be fairly accessible from some of the disability websites I read while writing this story. So rather than focus on the reaction of society as a whole I chose to look at the individual experience of a grandmother and her grandson (I guess). I saw them from the 2nd floor of the Hondori Tully’s and it made me smile because it did look like they had a great give and take. I also got to see people stopping and looking when their back was turned. I worked with people with developmental disabilities in my undergrad days and I think the reaction is the same everywhere. There are always people who will act that way no matter how “normal” your consumer/relative is acting. They seem offended by the existence of a developmental disability. I say to these two: Shop on! I’d really like to see them again.
what does love smell like?
11 years ago
