Entering Disability Culture as a Parent: Memory, Relativity, and Truth
Posted: November 26, 2013 Filed under: advocacy, disability, Down syndrome, emotional stuff, kids, parenting, the future | Tags: disability, Down syndrome, grief, memory, Parenting 21 CommentsMouse 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.
Kimchi Latkes 
“Bemembering”. That’s really something. It is unbelievable what children sometimes find out, just because their minds are not yet set in those tracks we are thinking in. – A lot of food for thought – thank you, Mouse!
Truly, children blow me away sometimes. “Bemember” is one of her last “wrong” pronunciations she’s got left, and I’ll be sad when she drops it.
This is both beautiful and thought provoking.
Thank you. I’d love to hear one day what thoughts were provoked!
There is a very profound lesson here for all of us, no matter what our life experiences may be.
Happy Thanksgiving to you, and to all of your beautiful family.
Yes, not at all limited to the experience of disability or Down syndrome at all. All of life is like this, you’re so right.
Sweet and thought provoking. :)
Thank you, mama. <3
Lovely…
Thank you!
Very thought provoking.
Everyone is telling me their thoughts were provoked but not sharing them. Wah.
Good stuff to contemplate.
“What I believed was happening at the time is very different than what I believe now to have happened.” Perhaps they are both the truth viewed from different perspectives. In some ways the memory becomes more important and more valuable than the true “facts” of what was, because it is the memory that goes on to be told and used.
I tend to agree with that, about the memory being more important. That’s the thing being actively used. I keep thinking about that conversation about memoirs a while back, and what it means to write down a memory in a way that never changes. Another post…
And the crazy thing is, not only will your memories of the past continue to change, your children’s memories will be unique to them.They’ll have their own perspective. I am often struck by how differently everyone in my family “remembers” different things. I overhead my husband telling a condensed version of our life story to a new friend, and it was so interesting to hear him tell it, the things he chose to highlight, the way he remembered the choices we’ve made, our experiences.
So true. I’m simultaneously fascinated and a bit scared to contemplate what the kids will say to me as adults about their childhoods. At least I’ll have this blog to prove that my intentions were good… ;)
Yes, I was also going to mention that I like blogging because it helps to have a real record of what was going on, not just my deeply flawed memory :-) Photographs are great too.
I can read about this topic all day! Revisionist history, fluidity in memory, truth, selective memory, and now bemembering. It is okay and natural to grieve. I’m sure you know that but I still wanted to write it because in a recent post somewhere you mentioned something about wishing you hadn’t grieved (sorry if I totally paraphrased wrong and sacrificed accuracy). Seems like your views on life have been greatly enriched by LP’s arrival though he’s just livin’ his life. I think this piece is ready to be published as is. Happy Thanksgiving.
I’m still pretty conflicted on the idea of grieving. It is true in a sense, and you’re right that feeling guilt over it isn’t entirely productive. Still, the grief story (general and mine specifically) has a lot of problems that I don’t see any good way out of. I just can’t imagine ever knowing or hearing my own parents say they grieved when I was born because of the way I was, you know? As much as those were my feelings, I also think it is messed up. Hard to reconcile those two.
Loved this post Jisun. Beautifully written. I have actually been back here a few times to reread. It is one of those post that makes me think and then rethink.
About the grieving thing…I grieved hard when Russell was born. But not because I didn’t get a “perfect” baby. Not because he wasn’t the boy I dreamed of…I grieved because I loved him so much I didn’t want a life full of struggles for him. I didn’t grieve him…I grieved Down syndrome.
I grieved the extra work he would have to put into a body that was not going to run smoothly…I grieved for opportunities I thought he may not have…For acceptance and understanding that may not always be there from others…I didn’t grieve over my son…But I did over his diagnosis because he was getting a harder life than I wanted for him.
I use to feel a deep shame in the way I handled Russell’s birth. But over the years I have learned to accept that those were in fact my true feelings and I can’t change it…Not because I didn’t love my son…But because I did. It’s not wrong for a Mother to feel sorrow over a child facing more obstacles and struggles in their life than seems fair. So when Russell grows up and if he ever reads his birth story and wonders why I cried and was sad…It’s because I didn’t want to see him struggle. And no matter what, he was always, always, loved.
Excellent post!
Thanks for this, Jenny. I honestly haven’t worked out all the reasons I was sad. Partly, it was like you say. Like I remember thinking, Oh God, he is going to be teased in school, and that tore me up. But another part… I haven’t worked all that out yet. Something about grieving the child you never had, which is what I thought was happening then but now seems like it wasn’t it at all. But like I said, I haven’t really worked it out yet. Another post. :)