Entering Disability Culture as a Parent: Memory, Relativity, and TruthPosted: November 26, 2013
Mouse pronounces the word “remember” with a “b” instead of an “r” at the beginning. Bemember.
I asked her once if she noticed her own pronunciation. She sat back thoughtfully, held up her hands and tilted her head in that exaggerated way unique to young children (something about the small arms and chubby bodies), and smiled. She said that it was on purpose because the act of remembering, or bemembering if you will, is about thinking about how you were being. In her words, it came out something like, “Well… Bemembering is for how you loosed to be.” (At the time, she also had a really hard time with words beginning with “u”. She’d always add an “l” in front. So “used to be” became “loosed to be”.)
I was entranced with the resulting stream of questions.
“What if you bemember, but then you forget? Can you change your mind? Does that mean it didn’t atchlually happen? Is that what happens for when you use your way? Maybe that word is for saying you bemember even after you forget. Is that a lie? You said I can only tell what weally happened.”
If a tree falls in the forest and no one is there…?
The most recent large event of my life was discovering my son has Down syndrome. It was, as you might imagine, a very big deal. For me, life changing. (For him, business as usual.) Recalling that conversation with Mouse, I realize that I’ve gone through the process of forgetting and reconstructing those early weeks many times already.
What I believed was happening at the time is very different than what I believe now to have happened. Memory is what we construct after we forget, after all, and is quite malleable. Our minds filter the experience and record only what we think at the time is relevant. The very process of remembering is tinted with forgetting. I’m keenly aware that I’ll continue to forget; each time I recall our “diagnosis story”, I’ll pull details and reconstruct it anew.
If a reporter could travel in time, my feature story nine months ago would have been filled with grief. Now, the same reporter could interview me and the same feature story would be filled with discovery and growth. The grief fades because it is no longer relevant. I realize what is more important in that story is the disability culture I discovered, the reordering of priorities, gratitude that we had forgone prenatal testing… acceptance. In my forgetting and remembering, I wonder, was the grief actually even grief, or something else entirely?
Then there is an issue of relativity. My perspective as a parent must be separated from my son’s experience. I can’t, and won’t, make him a vehicle for my own inspiration. He never insisted he was born, but here he is. I won’t blame him for my hardships as a parent, nor will I credit him for my personal growth. He teaches me nothing. What I learn is what I choose to learn.
A classic example of relativity is the train-and-platform thought experiment. If I stand inside a train and bounce a ball against the floor to my hand, the ball moves a certain measurable distance each way. Two feet, maybe. Straight down, then straight up into my hand. From the outside, however, as the train moves, what does it look like? A zig zag. If someone measures the trajectory of that ball from the outside stationary perspective, the distance is something greater than two feet, depending on the speed of the train. Both realities are quite true, both happen in time frames that exist together, yet are very different.
So what is the Truth? What is “actually being”? I’m standing in my life’s train, moving along, telling my story. I’m making sense of what is happening the best I can, and my experience as a parent is a large part of my story. LP’s train may have started hitched to mine, but has already gone on its own tracks. Five, ten, twenty years from now, how will he measure my actions, my words? In that time, will my story still start with grief, or something else? If it changes, am I lying? I’m trying to tell what actually happened, after all. It is just that in order to tell one Truth, I’ll have to omit some others.
Maybe Mouse is right. Bemembering is for how you used to be. Remembering… is something else entirely.