This I Know
Posted: December 10, 2013 Filed under: Down syndrome, parenting | Tags: diagnosis, Down syndrome, instinct, Parenting 7 CommentsWe are still animals. Animated flesh, blood, and bone. Electrical impulses make our thoughts. Despite how rudimentary it all seems, animals have knowledge of life and earth in ways that are difficult to comprehend.
I think we have mistakenly come to think of ourselves as beyond animals. We exalt human intellect as if we are beings of higher evolution, but are we really better, or even more competent? After all, don’t animals have intelligence that often seems beyond us as humans? How do animals know to migrate? How do they smell illness and death, foresee invisible danger? How do they know how to birth without help? How do animals know when they are ready to die?
Some is learned, but there’s more, isn’t there? Intuition or instinct, we sentient creatures share some kind of inborn knowledge. Whether it comes through our DNA, God, spirits, reincarnation, Mother Nature… I don’t know. I may not know its inner workings, but I recognize that I have some knowledge that is beyond what can be taught or even described.
There are a lot of people who thrive on telling others what is best, ideal, or right. Wisdom and expertise is packaged into how-to books, therapy, medicine, all manner of theories and methods. All seem to be for sale. Even things that are offered for free, cost elsewhere.
Entire economies are built on the idea of expertise. How to birth, how to eat, how to get your baby to sleep through the night, how to get your child with a disability to this or that milestone, or even how to find love. I know there is someone willing to sell past experience and expertise to me for every stage and piece of life.
What about what my animal nature knows? Without expertise, without fact or proof?
When we began to suspect that our son had Trisomy 21 (Down syndrome), there came a point when both Latke and I just knew it to be true. He’d grown, cell by cell, in my body. In a primal way, I knew.
Yet, our knowledge wasn’t enough. We had to get a karyotype done. No one except our anthroposophical (read: not mainstream) doctor would act on what we believed, what seemed obvious. Our friends and family couldn’t move forward emotionally, despite what we said. I didn’t blame them. They were not the ones who had brought my son into the world. They didn’t know him like we did. Still, it was hard. Once a person knows something, it is hard to undo.
An animal will never have the ability to engage in what we consider to be higher level thinking. Yet, it knows everything that it needs in order to survive. In our bodies, I believe there is knowledge. Knowledge inside our animated flesh, blood, and bone. Knowledge that is difficult to explain, and maybe should never be explained. We are still animals.
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. Read the rest of this entry »
Selfish Advocacy
Posted: November 22, 2013 Filed under: advocacy, disability, Down syndrome | Tags: civil rights, Disability rights movement, Down syndrome, Spinal cord injury 20 CommentsYou know why I care so much about disability as a civil rights issue? It isn’t just about my son. I also care about disability rights for an utterly selfish reason. Me. Yes, me. I’m not considered disabled, yet, I live with 100% certainty that I will experience disability in my lifetime.
Disability is just a matter of time.
I don’t want you to read that last line with the theme of Jaws playing in your mind. Maybe something more along the lines of Dvorak’s New World Symphony. Disability is a natural certainty of all human existence. I look around me, and don’t see disability as intrinsically negative, but rather something that shapes and defines our very existence in often beautiful ways. It is part of the package. The cycle of life and death is all shaped by difference, whether race, age, gender, sexuality, body type, or disability. That’s a good thing; difference gives our lives depth and meaning.
I might not have been born with a disability, but there will come a day when I join that group. It could be tomorrow—a car crash could injure my spinal cord and I’ll become a wheelchair user. It could be next week—I might develop fibromyalgia. It could be years from now—I’ll have a stroke that will change my brain and its functioning forever. It could be decades from now, when the simple process of aging requires that I turn in some of my bodily function and cognition before I leave this world for good. Like I said, it is just a matter of time.
So I ask myself, what will happen to me if suddenly or gradually become disabled? When I become disabled, it seems likely that people will mourn me. Mourn, as if my currently able-bodied, neurotypical self is my “true” self, and the rest is some sort of sad decline—a tragedy even. No, thank you.
I see my future and I don’t like all of it. I don’t want disability to only indicate some sort of deficit that warrants exclusion. I don’t want to fight for physical space because the world is only made for people who walk. I don’t want to fight for emotional space because no one will include me in conversation if I can’t keep up at a certain pace. I don’t want to fight for space because my need to manage pain, support myself, express myself will be deemed too costly by a society that seems more concerned with shallow material wealth and expediency than anything else.
Our society is so afraid of disability but imagine if we could accept it, embrace it, use it. Fellow human beings with disabilities are advocating about these possibilities every day. Advocates are speaking, and I’m sad that it took me three decades to listen.
My son. He’s been born into the world with a disability. Down syndrome, Trisomy 21, 47 chromosomes. I mourned his diagnosis, but I look back on that time with some honest regret. I shouldn’t have had to grieve in order to accept my own flesh and blood, and yet, I did. What would have been, what could have been, what should have been. Well, he IS. Period, end of story. He’s not some sort of consolation prize given to us instead of a child with fewer chromosomes. There’s no “true” LP floating out in the ether without his “extra” chromosome. He has all the chromosomes he’s supposed to have.
You see, my son and I are in the same boat. I wasn’t born with a difference that our society considers a disability, but I’ll have one eventually. So I’m selfish and a mother. I care about disability as a civil rights issue because I want both my son and my future self to be accepted and valued with disabilities, not despite. I don’t want to admit that I mourned my own son for what I thought he wasn’t, without realizing what he was. I don’t want to wonder if doctors will wake me up to die after a spinal cord injury. I don’t want anyone to question my ability to be a mother if I’m disabled. I don’t want change of cognition to mean I’m passed over and forgotten, viewed as a shell of my former self. Bodies and minds change, abilities change, identities change.
I can’t honestly say that my advocating is only for my son. I’m selfish. It is for me, too.
Kimchi Latkes 