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.
My Response to Ellen Stumbo’s “7 Ways to Help a Special Needs Family”
Posted: November 15, 2013 Filed under: advocacy, disability, Down syndrome, parenting | Tags: disability, Ellen Stumbo, Parenting, Special Needs 28 CommentsOk, I’m going to go out and disagree with another blogger. That is scary in bloggy land, but here I go, because this is an important discussion to have.
There are some things that Ellen Stumbo writes with which I very much agree. I liked what she wrote about her experience choosing to adopt a child with special needs. I wish adoption was seen as more of an option in our society, and I’m glad she wrote that article for National Adoption Month.
This article by Ellen Stumbo, however, about ways to help special needs families, makes me deeply uncomfortable. She starts by asserting that “we are no different than you”, but then goes on manufacture a host of differences under the “special needs” umbrella. She conflates special needs and disability, while making inaccurate generalizations about both. She suggests that special needs families need meals, babysitting, even gift cards. Read the rest of this entry »
On Delayed Revelation and Sisterhood
Posted: November 11, 2013 Filed under: emotional stuff, kids, parenting | Tags: Birth order, California Academy of Sciences, Sibling, sisterhood, weddings 33 CommentsI have moments of delayed revelation. Something happens and it sticks in my head, rolling around, gathering shape and meaning until I’m ready to understand. I had one of those moments the other day, on Mouse’s birthday. It wasn’t until we went to a wedding that the entire moment really revealed itself to me. Toy trucks, shots with bartenders, wedding speeches, and the bond of sisterhood. It’ll make sense, I promise.
We went to the California Academy of Sciences for Mouse’s birthday. The girls watched butterflies, searched for fish, and learned about earthquakes. LP alternated between sleeping on my back and eating my hair. It was dandy. After lunch we went out to a little grassy area behind the restaurant so the girls could run around. They headed for two seal statues, sat on them, and promptly started arguing. Something about naming one of the seals “Baby Bird” or “Baby Turtle”. It was heated. De-sistering was threatened.
All of a sudden a little boy walked up to the seal. He parked himself in front of Mouse. Staring. It was obvious he wanted to connect with her, but didn’t know how. No time for sister fights now.
He went forward, Mouse went backward. Forward. Backward. Then he offered Mouse his toy truck. Now, if I know anything about kids, I know that this is a serious gesture. No dice. Still, he kept creeping on her until she nearly fell into the wood chips. Mouse was, as is typical in these situations, at a loss. Chipmunk dutifully came to her aid and broke the news to the guy:
“She doesn’t weally like you, okaaay?”
Oh, no, my heart. Crush. Splat.
I got up and had an immediate conversation with both girls about kindness and diplomacy. Apologies were made, boundaries negotiated, space offered. In the end, they did play together, although the girls didn’t break sister ranks. They were playing with him.
Then came the flash of my girls in the future. Older Mouse and Older Chipmunk, under-aged, yet at some bar somewhere, arguing, when someone approaches.
I could see it too well. Mouse will be anxious about her fake ID (procured, likely, by Chipmunk). Chipmunk has probably convinced her sister that they’d only have one drink and go home, only to end up doing shots with the bartender. Mouse will attract someone’s attention, but be too tongue-tied and uncomfortable with the spectacle to reclaim her space. Chipmunk, always willing to butt in, delivers the devastating line. She’s just not that into you.
Don’t laugh at me.
Mouse and Chipmunk are only two-and-a-half years apart, and it is fascinating to watch them be sisters. Right now, they are with each other nearly every hour of every day. Lately, they’ve even taken to sleeping in the same bed together. I can see how this closeness knits them together in a way that I probably will never understand. My brother is eleven years younger than I am and my sister died as a very young baby. I love my brother and we have a good relationship that is unique due to our age difference, but in many ways, we grew up as two only-children.
Latke’s cousin got married this past weekend. When the bride’s younger sister got up and made her speech, I couldn’t help but think of my little girls who would one day be so big.
Little Sister talked about knowing Big Sister in an intimate, almost secret way. She, of course, talked about good secrets—an intuitive kind of love that held them together, even as they lived in opposite parts of the country. Those secrets would be (and were meant to be) shared, as her sister embarked on a new life with her husband. It was a wedding speech, after all, and a beautiful one at that.
Maybe because Latke’s extended family was there, I thought about sibling relationships quite a bit this weekend. Latke’s mom has two sisters, and having lost my sister at a very young age, I’ve often wondered about what it would be to grow up with so much… sisterness. Watching my girls grow into themselves, I can see how that sister relationship can be full of secrets. Beautiful, happy secrets, and some vulnerable, troubled secrets. Secrets that they’ll one day share with other close friends, partners, maybe even my grandchildren.
Chipmunk already has some kind of intuition about why her sister clams up in front of others. Mouse is calming and reassuring for her sister who tends towards the fiery, rash side of things. When they’re not bickering, they laugh together in an easy, synchronous way. I imagine that they’ll know each other the same way we know our hearts beat, just by feeling.
So now, Chipmunk will break hearts for her sister at the playground. Whatever their arguments are, I hope they’ll be dropped when one needs the other’s support. Maybe in a couple of decades, one will decide to settle down, and the other will talk about their intuitive love for each other—broken and mended hearts, secrets meant to be shared, and easy laughter.
I’m sure none of it will turn out as I expect. As their mother, I hope to have the privilege of watching it all, no matter what.
p.s. If you are reading this, Mouse and Chipmunk, this is NO WAY condones under-aged drinking. I’m watching you.
Kimchi Latkes 