Running in public is never easy for me. But now that I'm at my personal highest weight it's even more about pushing myself way way out of my comfort zone. Last time I tried the Couch to 5K, I ran in my backyard so that no one would see me. I can exercise in public but running is something I feel like I must be thin to do. My already acute sense of self consciousness is magnified with every running step. And the thing is that when I feel bad about the way I look, I tend to layer. It's not something I'm proud of but it something I do almost on autopilot. But when you exercise, layering is problematic. I mean one can do it but it rather sucks.
When I pull on my running tights, I carefully avoid all mirrors but at some point I catch the faintest of reflections. The reflection of long thin legs tapering into a round rolly circle of fat where my stomach threatens to break out of the spandex. If I am able, as I sometimes am, to step back a bit, I am not sure what is so repulsive about a big belly pushing against some cloth. I mean, I'm clearly fat but it's not disgusting really. It's not a reason to hide inside, to not run, to not wear the clothes that are the most appropriate and comfortable for the duty ahead. But then I am slammed right back into the culture I live in, and I fear that I will be laughed at, mock, become someones personal "Person of Walmart." I live in secret terror that someone is going to snap a picture of my fat ass running, and post it on the Internet as a big "NO."
It happened the first time I went out. I like running out doors, and now that I've got the big fancy jogging stroller I don't want to run in the backyard. I also have a new attitude. I don't think I need to earn the right to wear fucking running tights, or maybe I earned the right because I'm running and that's what you wear when you run and it's cold. It's pretty simple. People should get to wear what they want without fear of being mocked, censored, raped, violently assaulted, etc. And that attitude pushed me past the people who had set up their hammock in the park, passed the walkers, the people driving by. Until the end, when I ran by a couple walking their dog. They were thin, Indy, the kind of people who populate our neighborhood. As I plodded by in my slow slow jog, the woman snickered and as I went by, she said something to the man, and they both burst out laughing. I could feel my attitude melting into shame and humiliation. All the years of mockery for being fat, the times I've been mooed or oinked at from school until just a couple of years ago hit me hard. I finished my run but with the flush of embarrassment.
I admit that it was a lot harder to run after this. I did my Day 2 run at home, safe from the eyes of the neighborhood. Then I didn't run for a lot of days. I had good excuses. Too busy running around kids around. It was too cold to bring Jude out and I hate running at the gym. When Monday rolled around, it was balmy. The rest of the week was going to be cold. I had to get out and get Jude out. I pulled on my tights. Shamed at the way they kept rolling down over what seemed liked the most giant belly ever. I put on my biggest tee shirt hoping it would cover most of my fat. I hauled the stroller out, strapped Jude in, and put my Ipod onto my new running set list. As the haunting, dark beginnings of Crystal Stilts filled my head, I began to walk. Toward the construction men who were working on the small park across the road from my house.
"Please don't let the running start." I thought over and over. We made it safely past the men who only glanced up briefly as Jude and I walked by them.
I started to think about all the memes that made fun of fat women wearing tight clothes. Of the assumptions that a fat woman MUST dress in a way that "minimizes" her fatness. The idea that of course she must notice that she looks FAT, and that she MUST WANT to hide this fat. I started to get really pissed off. What the hell does society want, I thought as I started to puff through my first one minute run. People think fat people should exercise but they don't want to make clothes for fat people to exercise in, and they don't want to actually see fat people in clothes for exercising. People want fat people to feel good and look good but only if it's clothes that hide the fat. What.is.wrong.with.this.picture? Everything, I answered, and began to stop giving a fuck that I was a fat girl in running tights. I took of my coat when I got hot because I was hot. I stopped caring that my shirt was riding up because damn it I wasn't going to run in a tent.
I finished my run going past the construction workers who didn't look up from their lunch. I ran by cars, and by other runners who were all thinner than me. I ran by walkers, and their dogs. I ran by a little girl and her mom. I ran and I ran angry that I even had to spend so much time in my head to get me to a place where I could wearing these stupid running tights without feeling shame.
Here's the thing. I don't have to earn my right to wear anything. If you don't like my body, don't look at it. My body is not disgusting or repulsive. My body has done pretty good for me all these years. I have used this body hard and put it through quite a bit of agonizing pain all in the quest to be thin. To shrink myself to a standard set by a society that at the same time tries to sell me shit food. But this body still stuck with me. I bore children with this body. I have run and climbed and danced and made love with this body. This body is a pretty amazing wonderful thing. I shouldn't have to hide it so that I am not mocked for it. I shouldnt' have to worry about it something is too tight or if this dress looks like shit on my apple shape (never mind that I love the dress). I wish I could say I"m over it but I suspect I will keep struggling but that's okay because the struggle is worth it. It's worth it when I see my own daughters comfortable in their skin. Not worried about being fat or not. Just happy with their bodies that serve them well.
Tuesday, January 28, 2014
Thursday, January 23, 2014
It's not about political correctness, it's about not being an asshole
Lately I can't help but notice there's a great deal of whining from people about being "forced" to use "politically correct" terms. Lots of hand wringing over the "word police." What's interesting is that every single time I see this kind of whining it comes from white, abled-bodied, neurotypical, straight people. Usually conservative but not always (a surprising number of my "liberal" friends don't get the problem with the r-word, and then defend their use of it).
Now let me just say this. If you are white, abled-bodied, neurotypical, straight, etc you have privilege. Period. And that means you don't get to decide what people who are not white, abled-bodied, neurotypical, straight get to be called. It really is that simple. You don't get to whine that you can't use racial slurs or gay slurs or disabled slurs. It's not about you . It's not about that five seconds that it takes to not go on about how you don't mean my kid when you ever so casually drop the r word.
Part of being in a position of privilege is having control over what words are used to describe you. Especially public words. And part of letting go of privilege is going to mean allowing those who are not in societal positions of power to dictate the language they want to describe themselves. It means letting go of what you want, what's easier for you, and about getting our your mental ass to relearn how to talk. It's okay if you slip up but instead of whining about the word police? Apologize. A simple "I'm sorry that was not OK for me to say" can go a long way.
Really it comes down to just not being an asshole. If someone doesn't want to be called gay or black or whatever don't call them that. When people who have intellectual disabilities tell you that when you use the r word as an insult or to denote something you think is unimportant or insignificant don't use it. There shouldn't be any space for trying to argue a position here. There is no position.
You're not being politically correct when you defer to someone asking to not be signified. You're ceasing to be an asshole.
I was just attacked on Twitter for "speaking for people of color" thus I took away any mention of race. I won't presume to speak for POC and I apologize if that is what anyone took from this post. I will continue to say that it is often people of privilege who defend using words that are considered slurs by others. I understand that I am white. But I am also not neurotypical, have children who are not neurotypical or white, and grew up extremely. This isn't a poor me commentary but rather a place to openly speak of who I am.
Now let me just say this. If you are white, abled-bodied, neurotypical, straight, etc you have privilege. Period. And that means you don't get to decide what people who are not white, abled-bodied, neurotypical, straight get to be called. It really is that simple. You don't get to whine that you can't use racial slurs or gay slurs or disabled slurs. It's not about you . It's not about that five seconds that it takes to not go on about how you don't mean my kid when you ever so casually drop the r word.
Part of being in a position of privilege is having control over what words are used to describe you. Especially public words. And part of letting go of privilege is going to mean allowing those who are not in societal positions of power to dictate the language they want to describe themselves. It means letting go of what you want, what's easier for you, and about getting our your mental ass to relearn how to talk. It's okay if you slip up but instead of whining about the word police? Apologize. A simple "I'm sorry that was not OK for me to say" can go a long way.
Really it comes down to just not being an asshole. If someone doesn't want to be called gay or black or whatever don't call them that. When people who have intellectual disabilities tell you that when you use the r word as an insult or to denote something you think is unimportant or insignificant don't use it. There shouldn't be any space for trying to argue a position here. There is no position.
You're not being politically correct when you defer to someone asking to not be signified. You're ceasing to be an asshole.
I was just attacked on Twitter for "speaking for people of color" thus I took away any mention of race. I won't presume to speak for POC and I apologize if that is what anyone took from this post. I will continue to say that it is often people of privilege who defend using words that are considered slurs by others. I understand that I am white. But I am also not neurotypical, have children who are not neurotypical or white, and grew up extremely. This isn't a poor me commentary but rather a place to openly speak of who I am.
Friday, January 10, 2014
Each Day Is Filled With Joy
Life with five beasties is not always a big party. Well actually scratch that...it is a big party. One that is so long that it has eeps and flows. In any given day, we fluctuate between laughing hilarity to teen angst complete with slamming doors and muttered insults. Now I get that the Beastie abode is one intense place, and we certainly do have a house full of very passionate people so our experience might be a bit different. For me, it's been a revelation because before I meet H I spent a great deal of my time alone. Oh yes I had roommates, and I was very close to a couple of them but it really wasn't like living in a family as much as I thought it was at the time. When I hit my winter depression, I isolated and there wasn't anyone who pulled me out. I could sit in my room, listen to dreary music and read dreary poetry until I was so sad I could barely move. In the middle of those icy isolated winter days where the light is not nearly enough and the dark comes too early, I knew whole days with no joy. Entire days where I never laughed or smiled. Days where I could easily avoid seeing another person if I so wished.
My life is nothing like this now, and hasn't been since I had Umberto. Don't get me wrong I don't think having children is some kind of cure for depression. It's not. And I've dealt with my own fair share of depression since having kids. In fact, I went on anti-depressants for the first time in my life after having kids. I am not going to belittle that depression can hit even harder in the midst of parenting. Parenting is tough and it's sadly often a very isolated experience. And in my parenting years, I have felt all these emotions, and have struggled with finding my own identity that got lost in motherhood, and all the things that people have written millions of things about before. This is my disclaimer before I continue.
For, and again I emphasize, for me, parenting has also brought a whole load of joy into my life . And this is really important. At first, I found myself a bit mistrustful of this joy. I kept waiting for someone to pull the carpet out from under me. Whenever I was sad or depressed, I leapt on that moment like it was life line. "See!" I thought smugly, "There really isn't joy for me!" Usually five minutes later, Umberto would smile or hug me. Eventually Camille would be adorablely silly. Piper would dance. Rowena would tell us some off the wall story. And Jude...oh Jude with her smile and her clever sense of humor. They would all force a smile, a tiny bit of hot joy from the cold. At some point, it occurred to me that I was afraid to be happy. I realized it a long time ago. What was wrong with me? I wrote about it. I talked about it. Why was I scared to admit that I felt joy. That I liked laughing. That being with my family made me so happy I felt delirious with it?
One day Camille told me she didn't like to smile.
I remember being wounded by that line, and how I had spent so much time not talking about being fat that I had forgotten there are other things we might not want to pass onto our children. It was clear I needed to spend some time evaluating why I was bloody terrified of being happy. And it turned out that was quite a worm hole. There were so many things. I was terrified that if I allowed myself to be happy that some great cosmic trickster was going to come and take it all away from me. Depression had been a part of my life for so long that it felt like it was the only emotion I could have. I also didn't understand how one could have joy and depression at the same time so when I felt joy I quickly killed it. No room for that here thank you very much. And part of it was that joy didn't seem to fit in to a world with so much injustice so much pain so much wrong. The real kicker was realizing that being unhappy, depressed, grumpy had become a part of my personality so much so that to not be that way felt like a betrayal of my very self.
But when I had that moment when I was pregnant with Jude, I promised her and myself that enough was enough. For Camille, for Jude, for all of my beasties, it had become vital that I learned to embrace joy. To accept those beautiful, funny, sweet moments as worth receiving. Over the last year, I have smiled more, laughed a great deal. I've cuddled with my sweet children. Marveled openly at their amazing sparklingly selves. There are so many pictures of me smiling and laughing. It was a good year. A beautiful year. A year fulled of all the normal shit that just makes happy to be in this life with these people.
And the thing is that there was crap stuff too. I yelled too much and felt like a bad mom. A certain beastie boy became a teen and well I'll just leave it at that. I didn't lose any weight and used food more than ever as a drug. I was angry a great deal. I struggled with depression. There were WEEKS where I had to force myself to leave the house. I cried because I hated myself. All this happened in between the joy.
Here's what I figured out. Being joyful, embracing what is wonderful and beautiful in your life does not negate the shit stuff. It doesn't just vanish because you're happy. Yes sometimes, perhaps most of the time, the joy does make that shit stuff bearable. I could be happy and still have to wrestle with all my demons so to speak. Being joyful didn't make me less of a writer. It doesn't diminish me as a person. it doesn't make me dumber or smarter.
More importantly being joyful doesn't make me any less outraged. And this is important. For every bit of joy I allowed myself this year, there was an equal measure of being accused of being angry all the time. I was told to lighten up, to embrace life, to love not hate, and on and on. I chuckled every time because how ironic was it that the year I opened up to joy was also the year I reawakened my passion for social justice? You see, I am utterly outraged at the state our world. The lack of compassion we have for our fellow earthlings both human and nonhuman is frankly disgusting. The killing of innocents, and even of not innocents. The wars. The way we shit up our environment. The fact that people with disabilities are treated with so scorn, pity, and injustice. The killings of young Hispanic men. I could go on but I think you get the picture. The world, my dear readers, is fucked. And that pisses me off. It makes me angry enough to write and to yell and to demand change. I'm outraged enough to call senators on the phone (major phone phobia here). To travel to Atlanta in the middle of the summer with five kids. To go stand in the cold to support a mayoral candidate who had big dreams for our little town. The joy doesn't take away from the outrage.
In fact, I think the joy fuels the outrage. Because joy is a big thing. It's something that demands to be shared. When I feel this joy welling up inside me my urge isn't to damp it down but to let it come and to let it flow to others. The fact is that we all deserve joy and when we are denied the most basic of human rights we are also denied joy. And that is wrong. Period. So much of my own fear came from feeling undeserving and that speaks to a bigger problem than just my sad low self-esteem. What does it say about our world that we feel like you have to earn or deserve joy? Be warned that I'm about to get all mystical. Joy, I suspect, is a mystery. One of the great mysteries.We do not earn joy. We accept it. It comes to us like a gift.
My life is nothing like this now, and hasn't been since I had Umberto. Don't get me wrong I don't think having children is some kind of cure for depression. It's not. And I've dealt with my own fair share of depression since having kids. In fact, I went on anti-depressants for the first time in my life after having kids. I am not going to belittle that depression can hit even harder in the midst of parenting. Parenting is tough and it's sadly often a very isolated experience. And in my parenting years, I have felt all these emotions, and have struggled with finding my own identity that got lost in motherhood, and all the things that people have written millions of things about before. This is my disclaimer before I continue.
For, and again I emphasize, for me, parenting has also brought a whole load of joy into my life . And this is really important. At first, I found myself a bit mistrustful of this joy. I kept waiting for someone to pull the carpet out from under me. Whenever I was sad or depressed, I leapt on that moment like it was life line. "See!" I thought smugly, "There really isn't joy for me!" Usually five minutes later, Umberto would smile or hug me. Eventually Camille would be adorablely silly. Piper would dance. Rowena would tell us some off the wall story. And Jude...oh Jude with her smile and her clever sense of humor. They would all force a smile, a tiny bit of hot joy from the cold. At some point, it occurred to me that I was afraid to be happy. I realized it a long time ago. What was wrong with me? I wrote about it. I talked about it. Why was I scared to admit that I felt joy. That I liked laughing. That being with my family made me so happy I felt delirious with it?
One day Camille told me she didn't like to smile.
I remember being wounded by that line, and how I had spent so much time not talking about being fat that I had forgotten there are other things we might not want to pass onto our children. It was clear I needed to spend some time evaluating why I was bloody terrified of being happy. And it turned out that was quite a worm hole. There were so many things. I was terrified that if I allowed myself to be happy that some great cosmic trickster was going to come and take it all away from me. Depression had been a part of my life for so long that it felt like it was the only emotion I could have. I also didn't understand how one could have joy and depression at the same time so when I felt joy I quickly killed it. No room for that here thank you very much. And part of it was that joy didn't seem to fit in to a world with so much injustice so much pain so much wrong. The real kicker was realizing that being unhappy, depressed, grumpy had become a part of my personality so much so that to not be that way felt like a betrayal of my very self.
But when I had that moment when I was pregnant with Jude, I promised her and myself that enough was enough. For Camille, for Jude, for all of my beasties, it had become vital that I learned to embrace joy. To accept those beautiful, funny, sweet moments as worth receiving. Over the last year, I have smiled more, laughed a great deal. I've cuddled with my sweet children. Marveled openly at their amazing sparklingly selves. There are so many pictures of me smiling and laughing. It was a good year. A beautiful year. A year fulled of all the normal shit that just makes happy to be in this life with these people.
And the thing is that there was crap stuff too. I yelled too much and felt like a bad mom. A certain beastie boy became a teen and well I'll just leave it at that. I didn't lose any weight and used food more than ever as a drug. I was angry a great deal. I struggled with depression. There were WEEKS where I had to force myself to leave the house. I cried because I hated myself. All this happened in between the joy.
Here's what I figured out. Being joyful, embracing what is wonderful and beautiful in your life does not negate the shit stuff. It doesn't just vanish because you're happy. Yes sometimes, perhaps most of the time, the joy does make that shit stuff bearable. I could be happy and still have to wrestle with all my demons so to speak. Being joyful didn't make me less of a writer. It doesn't diminish me as a person. it doesn't make me dumber or smarter.
More importantly being joyful doesn't make me any less outraged. And this is important. For every bit of joy I allowed myself this year, there was an equal measure of being accused of being angry all the time. I was told to lighten up, to embrace life, to love not hate, and on and on. I chuckled every time because how ironic was it that the year I opened up to joy was also the year I reawakened my passion for social justice? You see, I am utterly outraged at the state our world. The lack of compassion we have for our fellow earthlings both human and nonhuman is frankly disgusting. The killing of innocents, and even of not innocents. The wars. The way we shit up our environment. The fact that people with disabilities are treated with so scorn, pity, and injustice. The killings of young Hispanic men. I could go on but I think you get the picture. The world, my dear readers, is fucked. And that pisses me off. It makes me angry enough to write and to yell and to demand change. I'm outraged enough to call senators on the phone (major phone phobia here). To travel to Atlanta in the middle of the summer with five kids. To go stand in the cold to support a mayoral candidate who had big dreams for our little town. The joy doesn't take away from the outrage.
In fact, I think the joy fuels the outrage. Because joy is a big thing. It's something that demands to be shared. When I feel this joy welling up inside me my urge isn't to damp it down but to let it come and to let it flow to others. The fact is that we all deserve joy and when we are denied the most basic of human rights we are also denied joy. And that is wrong. Period. So much of my own fear came from feeling undeserving and that speaks to a bigger problem than just my sad low self-esteem. What does it say about our world that we feel like you have to earn or deserve joy? Be warned that I'm about to get all mystical. Joy, I suspect, is a mystery. One of the great mysteries.We do not earn joy. We accept it. It comes to us like a gift.
"Do not look for rest in any pleasure, because you were not created for pleasure: you were created for joy. And if you do not know the difference between pleasure and joy you have not begun to live." Thomas Merton
Thursday, December 26, 2013
Peanut Butter Fudge
Last night, H asked everyone to share a funny Christmas story with the family. I thought desperately as we went around the table, trying to come up with a story that wasn't funny touched with sad because for me my Christmas youth was rather bittersweet. I can't honestly think of a bad Christmas but I can't think of any that didn't have some kind of sadness or anxiety or worry underlining them. I came up with a recent story, one where I surprised H really good with his gift, and even Umberto kept his cool with the secret. But it made me think about the Christmases of my past, and that's when I became a bit obsessed with making my Gram's Christmas fudge. I had plans to make fudge anyway as I always do this time of year but this time I wanted THE fudge. The one that when I bit into, I'd taste the crystal grains of sugar. I could taste what this fudge was supposed to taste like even thought I hadn't had it in years.
My Grams made fudge for every Christmas. She'd wrap the pieces in tissue paper and put them into Christmas cookie tins. Each family got one tin, and I looked forward to it every year. It rated right up there with presents. We usually opened this treat at the family Christmas Eve party, and about an hour in all the cousins including me would be jacked on sugar, running around like hamsters without wheels. The noise level would escalate to proportions that would drive even the most patience adult into yelling for quiet. All that delicious sugar though was too much to resist, and we devoured the fudge in one night fighting among ourselves for that last piece. I now wonder if any of the adults even got a taste.
When I was in college, I'm pretty sure there was a period where Gram's stopped making the fudge. But then again it was also the period where I stopped going to the family parties. Christmas Eve was spent first with a boyfriend's family, and then at my job, or alone. Later when I started to attend the family functions, first with H and then with a wee Umberto, the fudge was no longer being made for sure. H can't remember having this wonderful sugar treat and he would remember if he had tried it.
Now my own children have only been to Maine once for Christmas. We're not able to get up often. It's expensive. And cold. But last night, I knew that I had to recreate this bit of Christmas. This memory that I hold very close to my heart. It is a constant. An always beautiful thing, a taste, a sweetness of my Grams.
I could have asked my Gram's for the recipe, and I will, but I decide to make this fudge late. I was pretty sure she was sleeping. I hauled out my good heavy pan, the evaporated milk, sugar, mini-marshmallows (I think my grandmother uses Marshmallow creme), butter, peanut butter, and vanilla. I found my candy thermometer that I NEVER use. And I prayed because the chances of getting this fudge to set on my first try were not high. As I stirred the butter, milk, and sugar, waiting for the rolling boil, I remembered watching my grandmother stirring the ingredients. I loved watching my grams cook. She always told stories. She was a story teller, and she wove together my favorites: the way her horse, an old race horse, would race into the barn, forcing whoever was on his back to duck low so they didn't hit the door frame, stories about milking cows on her family's diary farm, stories about me when I was a baby. I loved them, and I'd stand on a chair watching her add ingredients while she talked.
The mixture came to a boil nicely, and I clipped on the candy thermometer while I put together the mini marshmallows and peanut butter in a bowl. I checked with something bordering on obsession waiting for the red line to hit 234. When it hit nine minutes later, I quickly took the pan off the stove, and stirred in everything else. I poured the mixture into a square baking pan, and prayed. H and I licked the spoon, and I closed my eyes as that first taste of sweet hit my system.
"If this fudge sets, it's going to be perfect." I told H.
And when I checked later, it was starting to get hard. None of us can resist it though, and we've been sneaking bits off. It's supposed to sit over night and I know if we can wait it will be perfect by morning.
It's always amazing to me these moments when I can reach into the past and pull out a memory this way. Usually the past comes with nasty attachments that end up making me sad or disappointed. Recreation rarely works. But tonight I have fudge that when I bite into it, I am back beside my grandmother, warm and happy, filled with the sweetness of fudge and her stories. Free to hear them as a child hears them. With all the magic.
I think this year was the year for such a perfect thing to happen. This Christmas I hit the balance between making Christmas joyful and fun without trying to compensate for my own past Christmas memories. This year it was about celebrating a year filled with love, a year with the people I love the most in the world. I realized I hadn't put much thought into how we were creating memories but more about how we were just living, having fun, making the most of the excitement. We played, we cooked, we crafted, and at some point I realized that we were doing things that would serve as markers for my children. Moments that they could look back on and touch. And in that space, I was able to recreate in all it's sugary delight, a perfect memory.
My Grams made fudge for every Christmas. She'd wrap the pieces in tissue paper and put them into Christmas cookie tins. Each family got one tin, and I looked forward to it every year. It rated right up there with presents. We usually opened this treat at the family Christmas Eve party, and about an hour in all the cousins including me would be jacked on sugar, running around like hamsters without wheels. The noise level would escalate to proportions that would drive even the most patience adult into yelling for quiet. All that delicious sugar though was too much to resist, and we devoured the fudge in one night fighting among ourselves for that last piece. I now wonder if any of the adults even got a taste.
When I was in college, I'm pretty sure there was a period where Gram's stopped making the fudge. But then again it was also the period where I stopped going to the family parties. Christmas Eve was spent first with a boyfriend's family, and then at my job, or alone. Later when I started to attend the family functions, first with H and then with a wee Umberto, the fudge was no longer being made for sure. H can't remember having this wonderful sugar treat and he would remember if he had tried it.
Now my own children have only been to Maine once for Christmas. We're not able to get up often. It's expensive. And cold. But last night, I knew that I had to recreate this bit of Christmas. This memory that I hold very close to my heart. It is a constant. An always beautiful thing, a taste, a sweetness of my Grams.
I could have asked my Gram's for the recipe, and I will, but I decide to make this fudge late. I was pretty sure she was sleeping. I hauled out my good heavy pan, the evaporated milk, sugar, mini-marshmallows (I think my grandmother uses Marshmallow creme), butter, peanut butter, and vanilla. I found my candy thermometer that I NEVER use. And I prayed because the chances of getting this fudge to set on my first try were not high. As I stirred the butter, milk, and sugar, waiting for the rolling boil, I remembered watching my grandmother stirring the ingredients. I loved watching my grams cook. She always told stories. She was a story teller, and she wove together my favorites: the way her horse, an old race horse, would race into the barn, forcing whoever was on his back to duck low so they didn't hit the door frame, stories about milking cows on her family's diary farm, stories about me when I was a baby. I loved them, and I'd stand on a chair watching her add ingredients while she talked.
The mixture came to a boil nicely, and I clipped on the candy thermometer while I put together the mini marshmallows and peanut butter in a bowl. I checked with something bordering on obsession waiting for the red line to hit 234. When it hit nine minutes later, I quickly took the pan off the stove, and stirred in everything else. I poured the mixture into a square baking pan, and prayed. H and I licked the spoon, and I closed my eyes as that first taste of sweet hit my system.
"If this fudge sets, it's going to be perfect." I told H.
And when I checked later, it was starting to get hard. None of us can resist it though, and we've been sneaking bits off. It's supposed to sit over night and I know if we can wait it will be perfect by morning.
It's always amazing to me these moments when I can reach into the past and pull out a memory this way. Usually the past comes with nasty attachments that end up making me sad or disappointed. Recreation rarely works. But tonight I have fudge that when I bite into it, I am back beside my grandmother, warm and happy, filled with the sweetness of fudge and her stories. Free to hear them as a child hears them. With all the magic.
I think this year was the year for such a perfect thing to happen. This Christmas I hit the balance between making Christmas joyful and fun without trying to compensate for my own past Christmas memories. This year it was about celebrating a year filled with love, a year with the people I love the most in the world. I realized I hadn't put much thought into how we were creating memories but more about how we were just living, having fun, making the most of the excitement. We played, we cooked, we crafted, and at some point I realized that we were doing things that would serve as markers for my children. Moments that they could look back on and touch. And in that space, I was able to recreate in all it's sugary delight, a perfect memory.
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| My Grams with my girls. |
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| Grams getting a kiss from R. |
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| Merry Christmas from a group of wild beastie. |
Monday, December 23, 2013
I Will Not Remain Silent
"and when we speak we are afraid/our words will not be heard/nor welcomed/but when we are silent/we are still afraid/So it is better to speak/remembering/we were never meant to survive."--Audre Lorde"Just let it go."
"Are your really surprised he/she/they said that?"
"You're being too sensitive."
"You're mean."
"Why are you so angry?"
"It's just a T.V. show/ a song/ a satirical news site/a book/a celebrity/a make up."
"They just want attention so why don't you ignore it?"
One thing I miss about a Maine winter is the silence that comes with a heavy snowfall. I'd often wake up right before dawn on those mornings, and just lie there surrounded by the quietness that always seemed to follow a heavy snow. Even the clanking and grinding of a snow plow's blade against the cement would be muffled, coming to me through layers of a cold barrier. It was insulating to be wrapped in my warm blankets while outside the world froze. It was the signal that the day would be spent with coffee and books and chocolate. I'd not have to get dressed or go anywhere. I'd be safe inside the bubble of my own warm world free from the noise that normally infiltrated even my quietest places.
Looking back, I realize this was not a world I wanted to be stuck in all the time. Rather it was a retreat, a safe time to process, to kick back, to just let go of things. Even when I was within this world, the outside penetrated in small ways. Worries about those who didn't have electricity (a deadly thing in a Maine winter), worries about those who had to travel (like my father who drives a trailer truck), worries about the homeless. Because I couldn't forget that while I warm and insulated there were others who were not.
Our peace always comes with a price, perhaps.
For a long time, I remained silent. I ranted to H of course. I convinced myself that my words were not going to do much anyway. I wrapped myself in the cloak of academic indifference and let my opinions only reflect a carefully cultivated objectiveness. In school, I created the same kind of world I had on snow days. The ivory tower of the academy became a little room in which I muffled all the knockings of the outside world. I filtered my indignation through study, and was able to damper my "emotional" response to things. I no longer shouted during class meetings. My passion was a more reserved response if you can call what I did a response. Or passion.
And then one day, a ten year old boy told H to "go home." People started to tell me that my oldest daughter "needed help." That there was "something wrong with her." My son started having seizures. My other daughter began to have panic attacks. States around me started passing laws that would make it legal for the police to stop my husband and demand proof of residency because he was brown. Gay people were being denied the legal rights of marriage. Lawmakers were increasingly infringing upon a women's rights to control her body. And then I found out my fetus had Down syndrome. And the world explode into sound. The muffling had crumbled in the face of such an onslaught and all the voices crashed upon me.
For a few months, I was pretty immobile, over-whelmed by the injustice. I did not know what to do. How to fight. I heard the voices telling me that I shouldn't get involved. I should observe. But without my academic credentials what good did observation do? I no longer could pretend that my academic work was somehow going to change the world. When I started to tentatively write about these things on my blog, I was told I was angry, and often asked if I really thought I was doing any good. When I confronted people, I was "mean" and a "bully." When I challenged things like the Onion or a make up company, people mocked the "pettiness" of these concerns. Why not focus on things like real writers in real papers? Who cares that a make up company uses a term like "Celebrtard"?
But something had been stirring in me. Something that had come from those cold winters. An activism I had laid to rest too early. I remember especially as I began to wake up the words of Audre Lorde.
I do not speak for you. I speak to you. I speak because to not speak would be unethical and injustice. I can not make you hear me or take my words for a stroll but that does not mean I must remain silent. What I experienced before was like a death. Now I am alive and awake. I am not insulated against the pain of the world or the unjustness of this time. I am awake, and while I am afraid, I am not silent. My silence did not protect me. It will not protect me. It will not protect my children. Or my husband. It will not protect the poor, the wretched, the abused.
I speak not because I have grand plans to change the world with my single voice. I speak so that maybe just one person will hear. I speak because not to speak is to lay down arms, and I will not lay down arms.
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Thursday, December 19, 2013
Red Dress
I started knitting about five years ago. It didn't begin as a serious love affair. Just a quick fling to procrastinate on my Master's thesis. Supposedly this was going to reduce my stress, calm my anxiety by giving me something to do with my hands. On paper, this was a fabulous idea. I've always been fidgety, chewing first on my hair as a child, then moving onto clothes when my mother cut my hair. Eventually my frayed sleeves and necklines, the gnawed strings from sweat shirts were replaced with the tops of pens, and when I was even older with cigarettes. Knitting at the time was simply another list in those things that helped me keep a bit of stillness in a body and mind that was constantly moving. Spinning.
In the beginning, I was a horrible knitter. I made squares that were lopsided and sloppy with holes from missed stitches. The imperfection of these things bothered me. I'd throw them out only to find them covering a multitude of tiny stuffed animals and plastic dinosaurs. Sometimes when the squares weren't too crocked, I'd sew them together to make little animals for Piper. But mostly it was an exercise in frustration. I sucked at knitting and it was hard for me to suck at something. My drive for perfection, my vision of the lovely knitted things I saw, took out any relaxation that was supposed to come from the exercise, from the doing.
When Horacio gifted me two beautiful skeins of wool, I reached my end. They were so lovely, so soft, the colors a miracle, I couldn't do anything with them. I was too scared to knit them because nothing I could knit would match the loveliness of the yarn. I put the knitting away, and focused on the thesis.
The thesis was done when we decided to try for another baby. As soon as I saw the two lines, I dug out my needles and yarn. The lovely skeins were now only one. I can't even remember what happened to the lovely red one. I still wasn't ready for the remaining wool which held the colors of the ocean, the swirls of blue and green. But I wanted to knit something for my new baby. This after all was what knitting seemed suited for. The babies. I overshot and picked out a lacy baby blanket pattern. After weeks of work, I held it up to see that it was a lopsided mess. This time I was able to laugh a bit at how spectacularly bad it was. I decided on a simpler thing, a blueberry hat since we called the then unknown Rowena, the blueberry. I knitted that hat through the end of my pregnancy filled with the dreams of this new baby. I knit it while the weeks of prodromal labor left me tired and frustrated. All my hopes, desires, and plans for this new life went into each stitch. And in the end it was a flawed hat but it was a hat that could be worn.
When I had Jude, I was a better knitter. The ocean yarn had long since become a cowl for my sister-in-law, and I had new yarns that I was no longer afraid to knit into pretty things. For Jude, I had grand plans. But because of the place my head was in during my pregnancy I had a hard time making those things flow from my hands onto the needles. As the end neared, I snapped into action. This baby was going to be the recipient of my skill, a skill that had not come "naturally" but one that involved work and practice. My needles flashed in the sun from the big living room window, as I stitched together blankets, and hats. As I blended pink and purple and gray into a circle of warm beauty, I dreamed of Jude. I put into each loop the love, the fear, the joy that filled me at the thought of her. Every piece I knit even those that ended up as gifts for other new babies was saturated with the intensity of my emotions for this new baby. The completion of our family. I knit frantically knowing with a quiet certainty that I would never again knit these tiny things for my own family. And I knit because I had to show Jude that no matter what I had felt at the beginning that now she was welcomed, loved, and desired not feared or unwanted. Each hat, each blanket, each piece that came from my hands, my arms, the repetitive movement of my body, was a statement of her value which was immeasurable really.
After Jude was prodded and examined, I made H pull out the blanket I had knit her, and I wrapped her in my love.
I decided at Jude's six month mark that I was going to knit her a dress for her first birthday. This decision was made with trepidation because I had never knit anything someone could wear. My one and only foray into a baby sweater resulted in something that looked cute but couldn't be worn. But I decided that I was going to make this for Jude. I was going to create something that looked spun by fairies. Something of beauty. A gift and a thanks for this baby who completed our family in ways we had not quite anticipated. For Jude, there was going to be something that spoke of all the feelings she arose in me. It would be something, I decided, that she could pull out and look at when she was older. She would be able to touch this thing and know how valuable and important she was to me, to her family. It was a lot to ask of a dress, I know.
The next two months were spent in finding a perfect dress. None of the free patterns came close to what I was envisioning. Finally I found one that was perfect. A heart on the front, and leaves at the hem. I bought the pattern terrified at the coming project. The value I had instilled in this article of clothing made it vital that I not mess it up. Now that I had a pattern, I had to pick the yarn. The dress was done in a fingerling weight which made me quiver even more. Fingerling weight yarn is so fragile, so light, and for me, so hard to work with. But it seemed right that this dress would be made from something so light and airy. I looked at several variated colors and wavere between an orange and a red. The red won out as Jude is a fiery spirit, full of light and flame.
And then I knitted. I knitted while Jude played on the floor next to me. I knitted in the van listening to her coo and laugh at Umberto. I knitted while she played with Rowena and Piper in the bedroom. I knitted while Camille entertained her with silly faces. I knitted while her father held her close and tight to his chest. When she was a little sick, I knit while she nursed all day, her tiny, pudgy baby hands wrapping themselves in the red variations of the yarn. And it flowed from the needles. Quickly I could see the bones of the dress, the shape and the form. The lace pattern over the chest looked like a heart, and I felt heartened that maybe I could create this thing of love. And at first, I knit with the consciousness of putting so much love into this item. I imagined it as a thing of magic that I could infuse with the love I held for not just Jude but all my children. Of their love of her. Our love, this bond that held us together in a way that left me breathless and sometimes feeling so unworthy. But as the project went on, I forgot to do this in a way that was intentional. Instead, one day I realized I was out of yarn, and I was almost done. I had to put the dress away to wait for a new skein to arrive in the mail. I knitted while I waited of course. Gifts for friends, projects, pumpkin hats (oh so many pumpkin hats).
When the yarn came, I took out the dress, and realized it was nearly done. It was beautiful. Not perfect no but lovely. I finished as I sat in the center of the joyful storm that is the beastie Christmas season. I didn't need to knit with the intent of love. It was always there. In every purl, every knit over. Every leave was a leaf filled with life and joy and beauty.
Jude wore her dress on her first birthday. A year has gone by since I held that tiny life in my arms. A year since she was laid on my chest and she looked at me with a knowing. There have been 365 days of wonderfulness, of love, of life, of joy. Not every day has been easy but every day has been full. Jude completed us not because she has Down syndrome but because she was the closing of our circle. I didn't become a better person because of Jude. I became a better person because I had to examine myself because Jude needed someone who saw the simple humanness of her.
In the beginning, I was a horrible knitter. I made squares that were lopsided and sloppy with holes from missed stitches. The imperfection of these things bothered me. I'd throw them out only to find them covering a multitude of tiny stuffed animals and plastic dinosaurs. Sometimes when the squares weren't too crocked, I'd sew them together to make little animals for Piper. But mostly it was an exercise in frustration. I sucked at knitting and it was hard for me to suck at something. My drive for perfection, my vision of the lovely knitted things I saw, took out any relaxation that was supposed to come from the exercise, from the doing.
When Horacio gifted me two beautiful skeins of wool, I reached my end. They were so lovely, so soft, the colors a miracle, I couldn't do anything with them. I was too scared to knit them because nothing I could knit would match the loveliness of the yarn. I put the knitting away, and focused on the thesis.
The thesis was done when we decided to try for another baby. As soon as I saw the two lines, I dug out my needles and yarn. The lovely skeins were now only one. I can't even remember what happened to the lovely red one. I still wasn't ready for the remaining wool which held the colors of the ocean, the swirls of blue and green. But I wanted to knit something for my new baby. This after all was what knitting seemed suited for. The babies. I overshot and picked out a lacy baby blanket pattern. After weeks of work, I held it up to see that it was a lopsided mess. This time I was able to laugh a bit at how spectacularly bad it was. I decided on a simpler thing, a blueberry hat since we called the then unknown Rowena, the blueberry. I knitted that hat through the end of my pregnancy filled with the dreams of this new baby. I knit it while the weeks of prodromal labor left me tired and frustrated. All my hopes, desires, and plans for this new life went into each stitch. And in the end it was a flawed hat but it was a hat that could be worn.
When I had Jude, I was a better knitter. The ocean yarn had long since become a cowl for my sister-in-law, and I had new yarns that I was no longer afraid to knit into pretty things. For Jude, I had grand plans. But because of the place my head was in during my pregnancy I had a hard time making those things flow from my hands onto the needles. As the end neared, I snapped into action. This baby was going to be the recipient of my skill, a skill that had not come "naturally" but one that involved work and practice. My needles flashed in the sun from the big living room window, as I stitched together blankets, and hats. As I blended pink and purple and gray into a circle of warm beauty, I dreamed of Jude. I put into each loop the love, the fear, the joy that filled me at the thought of her. Every piece I knit even those that ended up as gifts for other new babies was saturated with the intensity of my emotions for this new baby. The completion of our family. I knit frantically knowing with a quiet certainty that I would never again knit these tiny things for my own family. And I knit because I had to show Jude that no matter what I had felt at the beginning that now she was welcomed, loved, and desired not feared or unwanted. Each hat, each blanket, each piece that came from my hands, my arms, the repetitive movement of my body, was a statement of her value which was immeasurable really.
After Jude was prodded and examined, I made H pull out the blanket I had knit her, and I wrapped her in my love.
I decided at Jude's six month mark that I was going to knit her a dress for her first birthday. This decision was made with trepidation because I had never knit anything someone could wear. My one and only foray into a baby sweater resulted in something that looked cute but couldn't be worn. But I decided that I was going to make this for Jude. I was going to create something that looked spun by fairies. Something of beauty. A gift and a thanks for this baby who completed our family in ways we had not quite anticipated. For Jude, there was going to be something that spoke of all the feelings she arose in me. It would be something, I decided, that she could pull out and look at when she was older. She would be able to touch this thing and know how valuable and important she was to me, to her family. It was a lot to ask of a dress, I know.
The next two months were spent in finding a perfect dress. None of the free patterns came close to what I was envisioning. Finally I found one that was perfect. A heart on the front, and leaves at the hem. I bought the pattern terrified at the coming project. The value I had instilled in this article of clothing made it vital that I not mess it up. Now that I had a pattern, I had to pick the yarn. The dress was done in a fingerling weight which made me quiver even more. Fingerling weight yarn is so fragile, so light, and for me, so hard to work with. But it seemed right that this dress would be made from something so light and airy. I looked at several variated colors and wavere between an orange and a red. The red won out as Jude is a fiery spirit, full of light and flame.
And then I knitted. I knitted while Jude played on the floor next to me. I knitted in the van listening to her coo and laugh at Umberto. I knitted while she played with Rowena and Piper in the bedroom. I knitted while Camille entertained her with silly faces. I knitted while her father held her close and tight to his chest. When she was a little sick, I knit while she nursed all day, her tiny, pudgy baby hands wrapping themselves in the red variations of the yarn. And it flowed from the needles. Quickly I could see the bones of the dress, the shape and the form. The lace pattern over the chest looked like a heart, and I felt heartened that maybe I could create this thing of love. And at first, I knit with the consciousness of putting so much love into this item. I imagined it as a thing of magic that I could infuse with the love I held for not just Jude but all my children. Of their love of her. Our love, this bond that held us together in a way that left me breathless and sometimes feeling so unworthy. But as the project went on, I forgot to do this in a way that was intentional. Instead, one day I realized I was out of yarn, and I was almost done. I had to put the dress away to wait for a new skein to arrive in the mail. I knitted while I waited of course. Gifts for friends, projects, pumpkin hats (oh so many pumpkin hats).
When the yarn came, I took out the dress, and realized it was nearly done. It was beautiful. Not perfect no but lovely. I finished as I sat in the center of the joyful storm that is the beastie Christmas season. I didn't need to knit with the intent of love. It was always there. In every purl, every knit over. Every leave was a leaf filled with life and joy and beauty.
Jude wore her dress on her first birthday. A year has gone by since I held that tiny life in my arms. A year since she was laid on my chest and she looked at me with a knowing. There have been 365 days of wonderfulness, of love, of life, of joy. Not every day has been easy but every day has been full. Jude completed us not because she has Down syndrome but because she was the closing of our circle. I didn't become a better person because of Jude. I became a better person because I had to examine myself because Jude needed someone who saw the simple humanness of her.
Tuesday, December 03, 2013
Kick That Door Down
Today is International Day of Persons with Disabilities. The theme is "Break Barriers, Open Doors: For an Inclusive Society and Development for All." It's a great theme, an important theme. And it's also a theme that I feel pretty pissed off about even having to write. It should frankly be obvious that my daughter and others with disabilities of all kinds deserve to be included. Just like I think it's pretty obvious that people of color, poor people, gay people, all people should be living in a society that includes them in all levels. What's hard to get here, people? Jude is a human being, and as such is worthy of being a full part of the rich fabric of existence. But here I am, with my glass of wine, and my sweet babe on my lap, typing out yet another post about why my daughter deserves to be included in life.
Perhaps part of the problem is that when we hear the world inclusion we get stuck at the school idea of inclusion. Inclusion is a word that has become linked to education (and sadly not even college education). But what happens after school? Is work in a workshop really inclusion? Adult day cares? When our children grow up, inclusion ceases to be the buzz word that it is when they were younger. In fact, it seems like the word drops off the radar just like our kids drop off the radar. But they don't just cease to exist when they hit eight-teen. They continue to live and what a life:
People with disabilities are poorer than their non disabled counterparts.
They are more likely to be sexually and/or physically assaulted.
They are more likely to be un/under employed.
They often have to fight for rights we assume are given (such as choosing where they wish to live).
I could go on but I suspect when I post these statistics most people gloss over. I urge my readers to click the link above and read through the date. It is grim. And it's the kind of grim that I think rears it's head for so many people in our world, not just those with disabilities. We live in a world, I fear, that excels at exclusion not inclusion. I see it all over, in areas of race, ethnicity, gender, class, sexuality, and disability. And yes it is vital to look at the other areas because when I think of inclusion I think of the encompassing of all humanity. Every human regardless of their color, their ethnicity, their class, their gender (or genders), their ability, their sexuality, deserves, simply by the virtue of their humanity, to have access to adequate health care, living conditions, food, shelter, and peace. It's a big order folks but I'm tired of hand outs, of tokenism.
When I envision a world that fully includes Jude, it's pretty simple in many ways. I imagine a world that does not engage in eugenics and thus the question of choice is mote. In my imaginary world, people with Down syndrome and other intellectual disabilities are not seen with terror or sadness. The news that your fetus has Down syndrome is accepted as a variation of normal. I imagine a world in which Jude goes to school (or not as is the case in my household) like every other kid, and receives an education that meets her individual needs just as it meets the individual needs of all the other students. She is not sent to a closed room because there is no closed room. When Jude turns 18 in this world, she could choose college or not. She might choose a bohemian life, or a technical school. As she gets older, she'll fall in love, have sex, maybe get married. She would work a job that provided her with a decent income and that was meaningful. If she was sick or need medical care, she wouldn't have to worry that she would be given sub par care simply based on her intellectual disability. She would live the life that so many of us simply take for granted.
The element that I want to emphasize is that of her choice, of her options. Real inclusion means Jude gets to be a participant in decisions that effect her and her life. It means that she has the same menu that the rest of us are ordering from. Real inclusion is not a one time shot at a sport games, it's not about a few hours in a "real" classroom, it's not about working for Goodwill for .10 an hour, it's not about a pretend wedding to make up for the fact that the state she lives in might not let her marry. Inclusion means a world in which Jude gets to have a human life. Where she gets to be a child and then an adult. Where she is no one's angel (except for mine because all my beasties are pretty damn special to me), no one's inspiration simply because she exists and they feel bad for her for that existence.
What the UN proposes are working models of changes. Policies that would dramatically make life better, more inclusive for people with disabilities all over the world. The US does not hold the gold standard on how we include those with disabilities into the everyday life we live. We have a long way to go as well. By joining with our brothers and sisters (and those in between) all over the world, we have the power to effect policy, to demand radical inclusion for all people. It's time to stop pretending that the tokenism we often take for real inclusion is the real thing.
I've been told too often lately that I need to play nice. That I don't have a right to demand these things for Jude. But the thing is begging for a place at the table does us no good. We don't have to beg. We shouldn't have to beg. A place should already be set for all of us. I've never been a polite well-behaved woman, and I have no intentions of starting now. I will NOT raise any of my children, including Jude, to think that they need to ask on their knees for the rights given to the few. Instead, we will be practicing kicking down doors, and breaking those barriers. Not just for ourselves but for everyone.
Perhaps part of the problem is that when we hear the world inclusion we get stuck at the school idea of inclusion. Inclusion is a word that has become linked to education (and sadly not even college education). But what happens after school? Is work in a workshop really inclusion? Adult day cares? When our children grow up, inclusion ceases to be the buzz word that it is when they were younger. In fact, it seems like the word drops off the radar just like our kids drop off the radar. But they don't just cease to exist when they hit eight-teen. They continue to live and what a life:
People with disabilities are poorer than their non disabled counterparts.
They are more likely to be sexually and/or physically assaulted.
They are more likely to be un/under employed.
They often have to fight for rights we assume are given (such as choosing where they wish to live).
I could go on but I suspect when I post these statistics most people gloss over. I urge my readers to click the link above and read through the date. It is grim. And it's the kind of grim that I think rears it's head for so many people in our world, not just those with disabilities. We live in a world, I fear, that excels at exclusion not inclusion. I see it all over, in areas of race, ethnicity, gender, class, sexuality, and disability. And yes it is vital to look at the other areas because when I think of inclusion I think of the encompassing of all humanity. Every human regardless of their color, their ethnicity, their class, their gender (or genders), their ability, their sexuality, deserves, simply by the virtue of their humanity, to have access to adequate health care, living conditions, food, shelter, and peace. It's a big order folks but I'm tired of hand outs, of tokenism.
When I envision a world that fully includes Jude, it's pretty simple in many ways. I imagine a world that does not engage in eugenics and thus the question of choice is mote. In my imaginary world, people with Down syndrome and other intellectual disabilities are not seen with terror or sadness. The news that your fetus has Down syndrome is accepted as a variation of normal. I imagine a world in which Jude goes to school (or not as is the case in my household) like every other kid, and receives an education that meets her individual needs just as it meets the individual needs of all the other students. She is not sent to a closed room because there is no closed room. When Jude turns 18 in this world, she could choose college or not. She might choose a bohemian life, or a technical school. As she gets older, she'll fall in love, have sex, maybe get married. She would work a job that provided her with a decent income and that was meaningful. If she was sick or need medical care, she wouldn't have to worry that she would be given sub par care simply based on her intellectual disability. She would live the life that so many of us simply take for granted.
The element that I want to emphasize is that of her choice, of her options. Real inclusion means Jude gets to be a participant in decisions that effect her and her life. It means that she has the same menu that the rest of us are ordering from. Real inclusion is not a one time shot at a sport games, it's not about a few hours in a "real" classroom, it's not about working for Goodwill for .10 an hour, it's not about a pretend wedding to make up for the fact that the state she lives in might not let her marry. Inclusion means a world in which Jude gets to have a human life. Where she gets to be a child and then an adult. Where she is no one's angel (except for mine because all my beasties are pretty damn special to me), no one's inspiration simply because she exists and they feel bad for her for that existence.
What the UN proposes are working models of changes. Policies that would dramatically make life better, more inclusive for people with disabilities all over the world. The US does not hold the gold standard on how we include those with disabilities into the everyday life we live. We have a long way to go as well. By joining with our brothers and sisters (and those in between) all over the world, we have the power to effect policy, to demand radical inclusion for all people. It's time to stop pretending that the tokenism we often take for real inclusion is the real thing.
I've been told too often lately that I need to play nice. That I don't have a right to demand these things for Jude. But the thing is begging for a place at the table does us no good. We don't have to beg. We shouldn't have to beg. A place should already be set for all of us. I've never been a polite well-behaved woman, and I have no intentions of starting now. I will NOT raise any of my children, including Jude, to think that they need to ask on their knees for the rights given to the few. Instead, we will be practicing kicking down doors, and breaking those barriers. Not just for ourselves but for everyone.
Thursday, November 14, 2013
Check All That Apply
Yesterday Jude was scheduled for an X-ray at a Dr. who is not our regular. As is the custom, I was handed a clipboard bulging at the top with a sheaf of papers. I laid Jude's blanket on the floor, and plopped her down to play with her teething toy. As she cooed, laughed and tried to crawl around, I filled out paper work looking up every few moments to smile at her and chat. She was perfect there before me, her eyes bright and curious, taking in all the new things to see. There was a three day old baby there, and her parents were charmed with Jude who flirted with them outrageously.
And then I came to the section where you have to check all the boxes of medical conditions that apply to your child, and/or any diagnosis that your child has received. It was pretty routine (I've done this many times with four other kids after all) and then there it was: Mental Retardation. And I felt like someone had punched me in the gut. I looked down at Jude and I looked at the box. I was angry. Angry that the Dr. wasn't up with language enough to have the term intellectually disabled or ID. Angry that I had just come off a battle where some celebrity thought it was okay to use a word that had the word "tard" in it. Angry because people keep saying that this word doesn't apply to my child, and that I'm sick awful person for thinking it does.
At that moment, the man of the newborn said "I can't wait until she's doing things like your baby." And those words eased some of the pain I felt at that box. "She's pretty awesome," I said, "And your sweet babe is too. There is so much to enjoy now as well." I didn't say anything about Jue being delayed or that she was going to be considered mentally retarded at this office. I just took the compliment, the feeling that these people wished their sweet babe would be like my sweet babe. Because really this is what it's all about. Jude is human and like us all doesn't fit neatly into boxes created for forms. Created to confine us but also to give something to slop over, to overflow, to break out of.
When we left, I thought about that box for the rest of the day. I thought about the many times people have tried to turn my indignation at the "R" back onto me. How they try to make claims that the word has NOTHING to do with my daughter. How the word is not even used in medical fields any more. How it's just a word. It has no power, it doesn't mean anything. And how incredibly wrong they are. Think about it this way....imagine a word that is used as a racial slur or a word used to refer to homosexual people but is used in a derogatory way. Imagine now if you will that when you go to a Dr's office these are the words you are given to describe yourself or your child. Yeah. It's pretty shitty you know.
Every time you use the "R" word, you are using a word that is used to describe my child. A word that comes with a certain set of characteristics and behaviors. A word that will likely disable my child in a way that her biological condition never could do. When you name your cat "Tard" or your lipstick "Celebutard," you are creating a world when someone out there is going to have check a box that defines a child with a word you use to call people stupid or incompetent. Or as a comment on the way they move their bodies or on the way they appear to others.
The word covers up a human being. It's a label. And when you use it as an insult for a person or a circumstance or a thing you add to the power of the label.
Last night, H and I talked about how I felt and he held Jude close to him and whispered "You are not a box."
And then I came to the section where you have to check all the boxes of medical conditions that apply to your child, and/or any diagnosis that your child has received. It was pretty routine (I've done this many times with four other kids after all) and then there it was: Mental Retardation. And I felt like someone had punched me in the gut. I looked down at Jude and I looked at the box. I was angry. Angry that the Dr. wasn't up with language enough to have the term intellectually disabled or ID. Angry that I had just come off a battle where some celebrity thought it was okay to use a word that had the word "tard" in it. Angry because people keep saying that this word doesn't apply to my child, and that I'm sick awful person for thinking it does.
At that moment, the man of the newborn said "I can't wait until she's doing things like your baby." And those words eased some of the pain I felt at that box. "She's pretty awesome," I said, "And your sweet babe is too. There is so much to enjoy now as well." I didn't say anything about Jue being delayed or that she was going to be considered mentally retarded at this office. I just took the compliment, the feeling that these people wished their sweet babe would be like my sweet babe. Because really this is what it's all about. Jude is human and like us all doesn't fit neatly into boxes created for forms. Created to confine us but also to give something to slop over, to overflow, to break out of.
When we left, I thought about that box for the rest of the day. I thought about the many times people have tried to turn my indignation at the "R" back onto me. How they try to make claims that the word has NOTHING to do with my daughter. How the word is not even used in medical fields any more. How it's just a word. It has no power, it doesn't mean anything. And how incredibly wrong they are. Think about it this way....imagine a word that is used as a racial slur or a word used to refer to homosexual people but is used in a derogatory way. Imagine now if you will that when you go to a Dr's office these are the words you are given to describe yourself or your child. Yeah. It's pretty shitty you know.
Every time you use the "R" word, you are using a word that is used to describe my child. A word that comes with a certain set of characteristics and behaviors. A word that will likely disable my child in a way that her biological condition never could do. When you name your cat "Tard" or your lipstick "Celebutard," you are creating a world when someone out there is going to have check a box that defines a child with a word you use to call people stupid or incompetent. Or as a comment on the way they move their bodies or on the way they appear to others.
The word covers up a human being. It's a label. And when you use it as an insult for a person or a circumstance or a thing you add to the power of the label.
Last night, H and I talked about how I felt and he held Jude close to him and whispered "You are not a box."
Tuesday, November 05, 2013
It's All About Etymology
Oh yes, it's happened again. That ugly word along with its disgusting derivative has reared its ugly head. This time it's a lipstick called "Celebutard." Yeah seriously. Apparently Sephora and Kat Van D thought it would be a great idea, and they're marketing this lipstick with no end in sight. And of course Kat Van D's response was that those of us protesting were over-sensitive and that it was just a lipstick. I mean no one likes the word police right? And in addition to that stock response is a bunch of people telling us how we must hate our kids because we associate that word with them. This often involves sarcastic comments of fake pity. Those poor kids living with parents who fight for their right not have to hear slurs about them used by just about everyone. Clearly an awful fate.
Yup, I've covered this ground before, and have no doubt I will again. In fact, I'm even kind of annoyed that I'm having to write about this again. It's been done. Better even then what I'm doing here. But as I was snuggling with my little wee one, I knew that I had to write this to get it out there. It will be my stock response to the ignorance and the volatile that is hurled at me whenever I say "Um...hey could you not use the "R" word please."
I'm hoping that a bit of word history can break it down for those who don't get it. The word "retard" was first used in a clinical setting in the 1800s. It was clearly connected to people who had what we now call an Intellectual Disability. Some other words used in this connection are imbecile, moron, idiot (and yeah I don't use those words anymore either). While most medical fields no longer use the term MR it still pops up on occasion. I read it in more than one piece of literature about Down syndrome when I was pregnant with Jude.
What's vital for this conversation is that this word indicated a certain set of characteristics. In fact, it also marked a way of being in the world. A way of moving the body. An appearance. These things at some point refereed to people who were put into institutions because they were deemed a danger to society not just because of their actions but because they would "dumb" down to the population (see Down Wit Dat's excellent history of Down syndrome series). And that's the point that I want to emphasis here. The R word came to label people who performed low on IQ tests and were thus deemed "not intelligent." For people who might speak "slow" or move "slow" because they thought "slow." And by the 60s the word was being slung about as an insult. As a way to indicate that something or someone was not smart. That someone or something was "stupid" or "dumb."
Thus when you or when a company uses the "R" word or the derivative "Tard" they are in fact referencing back to the entire history of the word which means that at some point they are hitting back to people who were medically labeled. We don't use the word because it doesn't mean anything anymore. We use the word specifically because it at some point referred to people who were deemed intellectually inferior. If the word, had not come to be attached to this idea then it wouldn't be used the way it is used now. That's the problem.
See the thing is is that I KNOW Jude is not stupid. I KNOW that Jude is not intellectually inferior. I KNOW that Jude is going to learn things on her own time table just as we all do and that whether or not it's slower matters jack in the grand scheme of things. I do not look at my daughter and think "retard." Ever. So when you accuse me of thinking that when I see my kid, you're wrong.
You are right that I'm sensitive...maybe even overly so and for that I do not apology. I don't have much patience for slurs of any kind. This word hurts. A minority group is asking that the word not be used. I don't think it's too much to ask that we step away from the word. That we come up with more grown up ways of labeling things. That perhaps we even need to question this impulse to labels things and actions as "not smart." Maybe we need to actually question why so much of goes back to this idea of the "intellect." I'm not promoting an anti-intellectualism instead I'm suggesting we examine our narrow ideas and thus our narrow words connected to such an idea.
It's no joke. Maybe if the world was more equal for Jude, I could step away. But it's not. And when words like this are tossed about with such casual aplomb, it makes it even clearer that we have a ways to go.
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Yup, I've covered this ground before, and have no doubt I will again. In fact, I'm even kind of annoyed that I'm having to write about this again. It's been done. Better even then what I'm doing here. But as I was snuggling with my little wee one, I knew that I had to write this to get it out there. It will be my stock response to the ignorance and the volatile that is hurled at me whenever I say "Um...hey could you not use the "R" word please."
I'm hoping that a bit of word history can break it down for those who don't get it. The word "retard" was first used in a clinical setting in the 1800s. It was clearly connected to people who had what we now call an Intellectual Disability. Some other words used in this connection are imbecile, moron, idiot (and yeah I don't use those words anymore either). While most medical fields no longer use the term MR it still pops up on occasion. I read it in more than one piece of literature about Down syndrome when I was pregnant with Jude.
What's vital for this conversation is that this word indicated a certain set of characteristics. In fact, it also marked a way of being in the world. A way of moving the body. An appearance. These things at some point refereed to people who were put into institutions because they were deemed a danger to society not just because of their actions but because they would "dumb" down to the population (see Down Wit Dat's excellent history of Down syndrome series). And that's the point that I want to emphasis here. The R word came to label people who performed low on IQ tests and were thus deemed "not intelligent." For people who might speak "slow" or move "slow" because they thought "slow." And by the 60s the word was being slung about as an insult. As a way to indicate that something or someone was not smart. That someone or something was "stupid" or "dumb."
Thus when you or when a company uses the "R" word or the derivative "Tard" they are in fact referencing back to the entire history of the word which means that at some point they are hitting back to people who were medically labeled. We don't use the word because it doesn't mean anything anymore. We use the word specifically because it at some point referred to people who were deemed intellectually inferior. If the word, had not come to be attached to this idea then it wouldn't be used the way it is used now. That's the problem.
See the thing is is that I KNOW Jude is not stupid. I KNOW that Jude is not intellectually inferior. I KNOW that Jude is going to learn things on her own time table just as we all do and that whether or not it's slower matters jack in the grand scheme of things. I do not look at my daughter and think "retard." Ever. So when you accuse me of thinking that when I see my kid, you're wrong.
You are right that I'm sensitive...maybe even overly so and for that I do not apology. I don't have much patience for slurs of any kind. This word hurts. A minority group is asking that the word not be used. I don't think it's too much to ask that we step away from the word. That we come up with more grown up ways of labeling things. That perhaps we even need to question this impulse to labels things and actions as "not smart." Maybe we need to actually question why so much of goes back to this idea of the "intellect." I'm not promoting an anti-intellectualism instead I'm suggesting we examine our narrow ideas and thus our narrow words connected to such an idea.
It's no joke. Maybe if the world was more equal for Jude, I could step away. But it's not. And when words like this are tossed about with such casual aplomb, it makes it even clearer that we have a ways to go.
Add your post now!
Wednesday, October 30, 2013
We Are Not Your Token Humans
Likely, you've all seen the stand up routine or real life moment when someone excuses their racism with "I have a black friend." If such a friend is real, it's likely they are a mere token. A human being used as a marker to off set someone's racist ideas. A place holder to let someone off the hook from having to do a thorough examination of deep-rooted racism.
And it's not just people of color who are often used as tokens. It's people who are gay, disabled, female, etc. It's a form of "Othering" at its worst. It strips these people of their humanity. No matter what one's intentions, the end result is that a person becomes in the eyes of others not real. Not complicated. Not really quite human. I'm here to say loudly: I am not your token female. My husband is not your token Mexican friend. My daughter is not your token "Down's kid."
As I spent my morning with coffee and Facebook, I came across a couple of posts that I think really nail down the act of turning people into tokens that make us feel better, that maybe even allow us to step away from the real act of engagement with someone we view as entirely "Other." And what's important about the posts is that they show how tokenism is often shrouded in such a way as to make the "Othering" look benign, not so bad. This is important because while it's easy to get outraged over the bigoted and racist politician from North Carolina, it's a bit more difficult to suss out an "Othering" that is dressed up as kindness. My grams always said "The road to hell is paved with good intentions." Turns out she was right. No matter what your motivation "Othering" anyone for any reason is not good. It doesn't help in giving equal rights. It doesn't help in ensuring that when someone is murdered their disability isn't the reason given for their death. It doesn't help when someone with a disability wants a job. To be able to get married legally. You get the point, I'm sure.
The first was about using food banks, and being one of "those" people. You know the person who has to use a food bank, and the attitudes surrounding that venture. In the post, the author recounts an encounter with a fellow mother at her child's school. They are standing by the food bin where parents can donate food for a local food bank. There is the usual chatter about how great the parents are to donate (which they are don't get me wrong) but then one of the mother's retorts about how quinoa is such a ridiculous thing to donate because really "those people" don't know how to make quinoa." This woman was clearly into the charity of giving food was still able to dismiss those who need food assistance as a conglomerate of faceless stereotypes. Of course "those people" were not like her who clearly knows how to make something as exotic and healthy. "Poor people" live off Mac and Cheese and hot dogs right?
When the act of giving is done in the spirit of creating a distance it becomes, I think, an act of tokenism. Giving and then creating an artificial distance, is a way of not having to have an exchange, a relationship with someone. If one admits that someone who is living in poverty might be a complicated human being with a variety of experiences and emotions, then it makes dismissing them a lot harder. It means being not being able to step away from an interaction that might change who you are. When that woman in the post dismisses "those people" as not knowing how to prepare quiona she's doing more than insulting the palate. She's also creating a distance, a divide that clearly marks them as other. She creates the space for shame to grow. Do we have to swallow our pride because we need help or because people like her makes us feel that to go to a food bank makes somehow less human?
And then just when I thought the posting week couldn't get better, this post lands in my lap. I think this may have been the best thing I've ever seen on a blog. Seriously. The image she is referring to is of a woman, buff and thin, kneeling with her three young children. The caption reads "What's your excuse?"The author does a bang up of job showing how this attitude of obligation leads to between health and morality. And this in turn raises questions about who gets to be healthy. Too often in society, the idea of health has been denied those who are disabled, and this was taken even further in the imagining of art and writing where too often the villain is disabled. (See Shakespeare if you don't believe me). And now this idea that being moral means being healthy, means choosing exercise, means choosing ripped abs, is staring to rear it's head. The image bothered me precisely because I don't need an excuse for not exercising a hundred hours a week. Just like I don't need an excuse for eating Hershey kisses, nor do I need one for not doing Yoga, or for not meditating. Not doing runs the remote risk of me not living a couple of extra years but its NOT a moral failing. And even more frightening to me is how PWD become tokens in this kind of morality. They become both the symbol of unhealth and an inspiration because if they can do so can YOU.
Cause really what's more inspiring than a token PWD doing something like running a race? Winning a homecoming contest? Winning a baseketball game? And what's really clear is that these things serve as a way to make us feel bad about what we're NOT doing. They challenge us to make an excuse because hell even if a disabled person can do it why can't YOU. It doesn't occur to us to look beyond the token. To see that perhaps this person likes to run. Maybe they won the Homecoming contest because they're lovely and people like them. Maybe they are really good at basketball. But it's hard for so many of us to look beyond the token. To look beyond the inspiration. The no excuse. To see a real person there. To look beyond what this image does to me and see who is the subject of that image.
The thing is that when an article states "Girl With Down syndrome Crowned Homecoming Queen" we're using her as a token. She becomes a marker for how kind and compassionate the kids at her high school were. How kind and compassionate we are for sharing the post, for feeling good about the post. But are we also assuming that she couldn't win that crown unless she had Down syndrome? I think we are because if we weren't we wouldn't need the added "with Down syndrome." The same with allowing someone with Down syndrome to win a basketball game, or a wrestling match. We're not only denying this person the opportunity to lose, or fail, but we deny them the dignity of trying, the dignity of risk. We pretend these markers are real inclusion but they are not. Real inclusion would mean real, honest engagement. It would mean not saying things like "I JUST LOVE people with Ds" and "People with disabilities are so inspiring" because really that's just not the way things are. There are people out there with Down syndrome who are real assholes. And there are disabled people who are likely about as inspiring as I am.
This is what bugs me about the countless memes. The news articles. I understand where they come from, that people love me and they love Jude. They want me to feel encouraged perhaps. They want to inspire me. They want me to see that people with Ds are being treated okay in our world. But the problem is that these things are not often the real story. Instead of real acceptance, there is tokenism. It is not news when anyone lives on their own. It is news when someone paints a painting so amazing it hangs in the new Prince's room but it is not news that the painter has Down syndrome anymore than it is news that the painter is female, blond, and British. I've seen amazing things done by people with Ds and I've also read headlines that made me go "Huh?" because what they were reporting was NOT amazing. It was REGULAR life happening. A man going shopping is run of the mill stuff not the stuff of miracles. Patronizing someone by making this news does nothing towards equality or acceptance.
Imagine with me if you will headlines that read like "22 year old man lives on his own!" Or "19 year old girl goes to college!" How about "40 year old man has been in his own home for 20 years and does his own shopping!" "Local girl gets a job!" "Woman with red hair paints mediocre landscape in her den!" "Local boy runs race and comes in fourth!" This is the kind of thing I read nearly everyday about people with Down syndrome, and what it says to me is that we have not gotten to a place of real acceptance because real acceptance means that people with Down syndrome would only get in the news for the same reasons the rest of us do.
Sharing a meme is not meaningful engagement. Sharing posts after posts about how a bunch of high school kids made some homecoming queen and OMG they had Down syndrome is not meaningful engagement. Meaningful engagement is about recognizing the humanity of my child. It's about taking extra steps to make sure she is not a token in society (like calling your senator to ratify the Disability Treaty). It means appreciating Jude for being an awful cute baby who drools a lot. She is not an inspiration. There's no reason for her to be one as she's only been here for ten months. She doesn't even talk. Maybe someone day she'll go on to do great things. Maybe not. It's okay either way because as a real person, not a token, she gets to do that.
And it's not just people of color who are often used as tokens. It's people who are gay, disabled, female, etc. It's a form of "Othering" at its worst. It strips these people of their humanity. No matter what one's intentions, the end result is that a person becomes in the eyes of others not real. Not complicated. Not really quite human. I'm here to say loudly: I am not your token female. My husband is not your token Mexican friend. My daughter is not your token "Down's kid."
As I spent my morning with coffee and Facebook, I came across a couple of posts that I think really nail down the act of turning people into tokens that make us feel better, that maybe even allow us to step away from the real act of engagement with someone we view as entirely "Other." And what's important about the posts is that they show how tokenism is often shrouded in such a way as to make the "Othering" look benign, not so bad. This is important because while it's easy to get outraged over the bigoted and racist politician from North Carolina, it's a bit more difficult to suss out an "Othering" that is dressed up as kindness. My grams always said "The road to hell is paved with good intentions." Turns out she was right. No matter what your motivation "Othering" anyone for any reason is not good. It doesn't help in giving equal rights. It doesn't help in ensuring that when someone is murdered their disability isn't the reason given for their death. It doesn't help when someone with a disability wants a job. To be able to get married legally. You get the point, I'm sure.
The first was about using food banks, and being one of "those" people. You know the person who has to use a food bank, and the attitudes surrounding that venture. In the post, the author recounts an encounter with a fellow mother at her child's school. They are standing by the food bin where parents can donate food for a local food bank. There is the usual chatter about how great the parents are to donate (which they are don't get me wrong) but then one of the mother's retorts about how quinoa is such a ridiculous thing to donate because really "those people" don't know how to make quinoa." This woman was clearly into the charity of giving food was still able to dismiss those who need food assistance as a conglomerate of faceless stereotypes. Of course "those people" were not like her who clearly knows how to make something as exotic and healthy. "Poor people" live off Mac and Cheese and hot dogs right?
When the act of giving is done in the spirit of creating a distance it becomes, I think, an act of tokenism. Giving and then creating an artificial distance, is a way of not having to have an exchange, a relationship with someone. If one admits that someone who is living in poverty might be a complicated human being with a variety of experiences and emotions, then it makes dismissing them a lot harder. It means being not being able to step away from an interaction that might change who you are. When that woman in the post dismisses "those people" as not knowing how to prepare quiona she's doing more than insulting the palate. She's also creating a distance, a divide that clearly marks them as other. She creates the space for shame to grow. Do we have to swallow our pride because we need help or because people like her makes us feel that to go to a food bank makes somehow less human?
And then just when I thought the posting week couldn't get better, this post lands in my lap. I think this may have been the best thing I've ever seen on a blog. Seriously. The image she is referring to is of a woman, buff and thin, kneeling with her three young children. The caption reads "What's your excuse?"The author does a bang up of job showing how this attitude of obligation leads to between health and morality. And this in turn raises questions about who gets to be healthy. Too often in society, the idea of health has been denied those who are disabled, and this was taken even further in the imagining of art and writing where too often the villain is disabled. (See Shakespeare if you don't believe me). And now this idea that being moral means being healthy, means choosing exercise, means choosing ripped abs, is staring to rear it's head. The image bothered me precisely because I don't need an excuse for not exercising a hundred hours a week. Just like I don't need an excuse for eating Hershey kisses, nor do I need one for not doing Yoga, or for not meditating. Not doing runs the remote risk of me not living a couple of extra years but its NOT a moral failing. And even more frightening to me is how PWD become tokens in this kind of morality. They become both the symbol of unhealth and an inspiration because if they can do so can YOU.
Cause really what's more inspiring than a token PWD doing something like running a race? Winning a homecoming contest? Winning a baseketball game? And what's really clear is that these things serve as a way to make us feel bad about what we're NOT doing. They challenge us to make an excuse because hell even if a disabled person can do it why can't YOU. It doesn't occur to us to look beyond the token. To see that perhaps this person likes to run. Maybe they won the Homecoming contest because they're lovely and people like them. Maybe they are really good at basketball. But it's hard for so many of us to look beyond the token. To look beyond the inspiration. The no excuse. To see a real person there. To look beyond what this image does to me and see who is the subject of that image.
The thing is that when an article states "Girl With Down syndrome Crowned Homecoming Queen" we're using her as a token. She becomes a marker for how kind and compassionate the kids at her high school were. How kind and compassionate we are for sharing the post, for feeling good about the post. But are we also assuming that she couldn't win that crown unless she had Down syndrome? I think we are because if we weren't we wouldn't need the added "with Down syndrome." The same with allowing someone with Down syndrome to win a basketball game, or a wrestling match. We're not only denying this person the opportunity to lose, or fail, but we deny them the dignity of trying, the dignity of risk. We pretend these markers are real inclusion but they are not. Real inclusion would mean real, honest engagement. It would mean not saying things like "I JUST LOVE people with Ds" and "People with disabilities are so inspiring" because really that's just not the way things are. There are people out there with Down syndrome who are real assholes. And there are disabled people who are likely about as inspiring as I am.
This is what bugs me about the countless memes. The news articles. I understand where they come from, that people love me and they love Jude. They want me to feel encouraged perhaps. They want to inspire me. They want me to see that people with Ds are being treated okay in our world. But the problem is that these things are not often the real story. Instead of real acceptance, there is tokenism. It is not news when anyone lives on their own. It is news when someone paints a painting so amazing it hangs in the new Prince's room but it is not news that the painter has Down syndrome anymore than it is news that the painter is female, blond, and British. I've seen amazing things done by people with Ds and I've also read headlines that made me go "Huh?" because what they were reporting was NOT amazing. It was REGULAR life happening. A man going shopping is run of the mill stuff not the stuff of miracles. Patronizing someone by making this news does nothing towards equality or acceptance.
Imagine with me if you will headlines that read like "22 year old man lives on his own!" Or "19 year old girl goes to college!" How about "40 year old man has been in his own home for 20 years and does his own shopping!" "Local girl gets a job!" "Woman with red hair paints mediocre landscape in her den!" "Local boy runs race and comes in fourth!" This is the kind of thing I read nearly everyday about people with Down syndrome, and what it says to me is that we have not gotten to a place of real acceptance because real acceptance means that people with Down syndrome would only get in the news for the same reasons the rest of us do.
Sharing a meme is not meaningful engagement. Sharing posts after posts about how a bunch of high school kids made some homecoming queen and OMG they had Down syndrome is not meaningful engagement. Meaningful engagement is about recognizing the humanity of my child. It's about taking extra steps to make sure she is not a token in society (like calling your senator to ratify the Disability Treaty). It means appreciating Jude for being an awful cute baby who drools a lot. She is not an inspiration. There's no reason for her to be one as she's only been here for ten months. She doesn't even talk. Maybe someone day she'll go on to do great things. Maybe not. It's okay either way because as a real person, not a token, she gets to do that.
Tuesday, October 22, 2013
Falling Inbetween
The other day, as I was rushing out the door to go pick up H, I grabbed Butler's "Giving an Account of Oneself." I thought I had yet to finish the book but when I opened it up, waiting for H to come from his office, I saw that I had underlined the last paragraph. I realized I had finished the book while very pregnant with Jude and thus in the midst of black hole brain that comes with pregnancy. I glanced over what I had underlined and was stunned into a kind of amazed silence. Everything that I had underlined, especially things with exclamation points, addressed the concerns I have been feeling over narratives, scripts, and stories. I loved how these ideas had been germinating for so long and now as I get closer to the year anniversary of finishing the book, I'm seeing the sprouts coming up.
When I look over the ways we tell stories about having children with Ds (or any disability really) there appear to be two narratives. One says "Life with a child with disability is horribly hard. It's a life filled with drudgery, and hardship. Life with this child even when you love them is beyond stressful. It pushes you,the parent, into awful acts." With this story comes a kind of strange admiration borne of pity. Mothers with "normal" children can look at your story and feel good about their own "typical" kids. They can think things like "Oh you are so strong" which leads people to think that only "special parents" can have "special kids" and they are not that special. Our children become seen as burdens while, we, the parents are portrayed as beyond heroic giving all our actions, no matter how cruel or senseless, a validation.
In the other narrative is the story of another kind of specialness. Your child is an angel. A miracle. God's love embodied in human form. This story says that our kids love better than other kid. They are sent to us to teach us how to be better humans. The extra chromosome endows them with super powers usually of love. This is the story that tells us that kids with Ds are "sweet but stubborn." The children in this story are always photo shopped beautiful. Perfect and angelic as they gaze out at the viewer. Passive. These are the children people exclaim over but that they don't see as quite human. These children do not grow into adults but are frozen in the world of a glossy 8 X 10.
When I found I was pregnant with a child that had Ds, I found these two stories. There were very few stories where parents were saying "Eh I got a kid." I remember after Jude was born I found the blog 21 + 21 + 21 = ? and fell in love with the header on her blog "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay." Here was a narrative that was fitting what I felt about Jude. That fit what was going on in my day to day life. I didn't want to be sad about Jude having Ds. I wanted our life to just keep being our life. A life filled with chaos and beasties. A life where we sometimes felt like yelling in frustration. A life that was often filled with joy but sometimes felt like drudgery because you know after washing the 100th dish of the day it's hard to muster up enthusiasm. Basically here was someone who was saying "This is just life." Down Wit Dat wrote about this as well...about the need for a narrative that showed just how normal life is for her family.
What I would suggest has happened for us is that we hit that horizon limit. We were faced with stories that did not reflect the "you" in our lives, and we had to write something new. We had to find others who were writing something new. There had to be another story because the "yous" we were seeing were not the "yous" in our lives.
I want Jude to find the humanness of herself in the story that I tell about her. When I limit her to a stereotype on either end of the spectrum, there is not a lot of space to be human. In the narratives above, she does not qualify as a human. She qualifies as a flat representation denied the complexity of life. Right now I am the bearer of Jude's narrative because she is a baby and she can't give an account of herself. As she grows, she will ask me to tell her stories as all my children have asked. I will tell her stories about her fits of anger and frustration after getting stuck under the couch again. I will tell her about how she began to sing to me at ten months, and how it slayed me utterly and totally. These stories will accumulate as she gets older, and some day her voice will join with mine in the telling until one day her voice only will stand. But what will remain, I hope is the sheer normalcy of her life. The simple fact that our life did not get harder when Jude entered it. It got better in the sense that all of our children added joy to our family but it was not a miracle sent from God either.
The simple fact is that Jude needs a story about acceptance and that is why I write about Ds. I realized the other day that while I understand why people use the word awareness, I find it insulting. What are we raising awareness about anyway? Do we really need to raise awareness about this third chromosome? Why should we? Jude is a human being and that is really all one needs to know. Her medical conditions or lack of them are not something that anyone besides I and her father need to know. We all have a list of potential health crisis due to genetic material and yet we don't advertise them to the world. I owe no one an explanation as to Jude's appearance. We assume a difference and we seek to narrate it. This what I see in most cases of awareness. It is not what I desire for Jude.
Instead I want acceptance. I want Jude to be seen as she is which is a human being. Acceptance means being able to give an account of oneself that recognizes a relationship with humans. Jude and all people with intellectual disabilities deserve a story that includes failures, successes, giving up, not giving up, being sad, being happy, great joy, great sorrow, and most importantly real relationships with the people around them. Relationships that allow them to be both a "you" and an "I."
And because I want this real acceptance--not a tolerance, not an awareness--I am willing to make a stand. It's easy to say the narratives that we tell our own. We lay claim to them. We say they are our accounting and that we have a right to share those stories. But here's the problem. Those stories also involve a "you" and if that you is being denied a chance at humanity is it ethical to share your story? Is it ethical to continue the narrative that dehumanizes? I have said it before and will say it again "Yes you have a right to your own emotions but you don't not have a right to let your emotions spill into the way another person is painted to the entire world." In our world of tell all memoirs we are reaching the peak of what it means to share, to own our experiences and our emotions. We throw out to the glare of the world everything. And sometimes we forget that there is more than just us in these stories. Giving an account of oneself must always include the others with whom we create. So while I may not be able to tell you what to write, I can critique your story. I can challenge it. I can tell another story. If that makes me divisive so be it. For my daughters' sake, for my son' sake, for the sake of those with disabilities of all kinds, I will remember that when I given an account of myself I will always remember that my "I" was not shaped in isolation.
"When we come up against the limits of any epistemological horizon and realize that the question is not simply whether I can or will know you, or whether I can be known, we are compelled to realize as well that 'you' qualify in the scheme of the human within which I operate, and that no 'I' can begin to tell its story without asking: 'Who are you?' 'Who speaks to me?' 'To whom do I speak when I speak to you?'" Butler 134
When I look over the ways we tell stories about having children with Ds (or any disability really) there appear to be two narratives. One says "Life with a child with disability is horribly hard. It's a life filled with drudgery, and hardship. Life with this child even when you love them is beyond stressful. It pushes you,the parent, into awful acts." With this story comes a kind of strange admiration borne of pity. Mothers with "normal" children can look at your story and feel good about their own "typical" kids. They can think things like "Oh you are so strong" which leads people to think that only "special parents" can have "special kids" and they are not that special. Our children become seen as burdens while, we, the parents are portrayed as beyond heroic giving all our actions, no matter how cruel or senseless, a validation.
In the other narrative is the story of another kind of specialness. Your child is an angel. A miracle. God's love embodied in human form. This story says that our kids love better than other kid. They are sent to us to teach us how to be better humans. The extra chromosome endows them with super powers usually of love. This is the story that tells us that kids with Ds are "sweet but stubborn." The children in this story are always photo shopped beautiful. Perfect and angelic as they gaze out at the viewer. Passive. These are the children people exclaim over but that they don't see as quite human. These children do not grow into adults but are frozen in the world of a glossy 8 X 10.
When I found I was pregnant with a child that had Ds, I found these two stories. There were very few stories where parents were saying "Eh I got a kid." I remember after Jude was born I found the blog 21 + 21 + 21 = ? and fell in love with the header on her blog "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay." Here was a narrative that was fitting what I felt about Jude. That fit what was going on in my day to day life. I didn't want to be sad about Jude having Ds. I wanted our life to just keep being our life. A life filled with chaos and beasties. A life where we sometimes felt like yelling in frustration. A life that was often filled with joy but sometimes felt like drudgery because you know after washing the 100th dish of the day it's hard to muster up enthusiasm. Basically here was someone who was saying "This is just life." Down Wit Dat wrote about this as well...about the need for a narrative that showed just how normal life is for her family.
What I would suggest has happened for us is that we hit that horizon limit. We were faced with stories that did not reflect the "you" in our lives, and we had to write something new. We had to find others who were writing something new. There had to be another story because the "yous" we were seeing were not the "yous" in our lives.
I want Jude to find the humanness of herself in the story that I tell about her. When I limit her to a stereotype on either end of the spectrum, there is not a lot of space to be human. In the narratives above, she does not qualify as a human. She qualifies as a flat representation denied the complexity of life. Right now I am the bearer of Jude's narrative because she is a baby and she can't give an account of herself. As she grows, she will ask me to tell her stories as all my children have asked. I will tell her stories about her fits of anger and frustration after getting stuck under the couch again. I will tell her about how she began to sing to me at ten months, and how it slayed me utterly and totally. These stories will accumulate as she gets older, and some day her voice will join with mine in the telling until one day her voice only will stand. But what will remain, I hope is the sheer normalcy of her life. The simple fact that our life did not get harder when Jude entered it. It got better in the sense that all of our children added joy to our family but it was not a miracle sent from God either.
The simple fact is that Jude needs a story about acceptance and that is why I write about Ds. I realized the other day that while I understand why people use the word awareness, I find it insulting. What are we raising awareness about anyway? Do we really need to raise awareness about this third chromosome? Why should we? Jude is a human being and that is really all one needs to know. Her medical conditions or lack of them are not something that anyone besides I and her father need to know. We all have a list of potential health crisis due to genetic material and yet we don't advertise them to the world. I owe no one an explanation as to Jude's appearance. We assume a difference and we seek to narrate it. This what I see in most cases of awareness. It is not what I desire for Jude.
Instead I want acceptance. I want Jude to be seen as she is which is a human being. Acceptance means being able to give an account of oneself that recognizes a relationship with humans. Jude and all people with intellectual disabilities deserve a story that includes failures, successes, giving up, not giving up, being sad, being happy, great joy, great sorrow, and most importantly real relationships with the people around them. Relationships that allow them to be both a "you" and an "I."
And because I want this real acceptance--not a tolerance, not an awareness--I am willing to make a stand. It's easy to say the narratives that we tell our own. We lay claim to them. We say they are our accounting and that we have a right to share those stories. But here's the problem. Those stories also involve a "you" and if that you is being denied a chance at humanity is it ethical to share your story? Is it ethical to continue the narrative that dehumanizes? I have said it before and will say it again "Yes you have a right to your own emotions but you don't not have a right to let your emotions spill into the way another person is painted to the entire world." In our world of tell all memoirs we are reaching the peak of what it means to share, to own our experiences and our emotions. We throw out to the glare of the world everything. And sometimes we forget that there is more than just us in these stories. Giving an account of oneself must always include the others with whom we create. So while I may not be able to tell you what to write, I can critique your story. I can challenge it. I can tell another story. If that makes me divisive so be it. For my daughters' sake, for my son' sake, for the sake of those with disabilities of all kinds, I will remember that when I given an account of myself I will always remember that my "I" was not shaped in isolation.
Perhaps most importantly, we must recognize that ethics requires us to risk ourselves precisely at those moments of unkowningness, when what forms us diverges from what lies before us, when our willingness to become undone in relation to others constitutes our chance of becoming human. To be undone by another is a primary necessity, an anguish, to be sure, but also a chance--to be addressed, claimed, bound to what is not me, but also to be moved, to be prompted to act, to address myself elsewhere, and so to vacate the self-sufficient 'I' as a kind of possession. If we speak and try to given an account from this place, we will not be irresponsible, or, if we are, we will surely be forgiven." Judith Butler Giving An Account of Oneself 136
Monday, October 21, 2013
Who We Are
This is a rehash of a post I wrote in March. I'm reposting in support of Down Wit Dat's Blog Hop for 3/21.
Thursday is World Down syndrome Day, and I've noticed a run of blogs with the theme "I am..." I assume there is some kind of secret I've not been let in on. This morning I was trying to decide if I was going to jump on the train. Then I read this while drinking my morning coffee. She's right. Awareness isn't enough.
It's like, I thought, asking people to be aware that there are, you know, Hispanic people out there. Blink.
H was in New York in the early part of this month, leaving me home with the younger beasties. H has always been super positive about Jude and DS. When he wasn't around it was easy for me to get really morose and hung up on it. I had a series of what I call DS days when I had a hard time not seeing in Jude's features all the physical markers. And I'm ashamed to say I kind of got obsessed.
I felt like people were looking at oddly, trying to guess if she had Down syndrome or not. I am open to that being paranoia but I am used to people looking at my kids in questioning ways. People have asked me outright if they were adopted. Some would do the subtle "Wow your kids are so dark." Which is shorthand for what race are your children? I usually just ignore them because really it's no one's business. But with Jude I find myself blurting out to total strangers that she has Down syndrome.
Blink.
Why do I not blurt out that Rowena's father is Mexican.
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Thursday is World Down syndrome Day, and I've noticed a run of blogs with the theme "I am..." I assume there is some kind of secret I've not been let in on. This morning I was trying to decide if I was going to jump on the train. Then I read this while drinking my morning coffee. She's right. Awareness isn't enough.
It's like, I thought, asking people to be aware that there are, you know, Hispanic people out there. Blink.
H was in New York in the early part of this month, leaving me home with the younger beasties. H has always been super positive about Jude and DS. When he wasn't around it was easy for me to get really morose and hung up on it. I had a series of what I call DS days when I had a hard time not seeing in Jude's features all the physical markers. And I'm ashamed to say I kind of got obsessed.
I felt like people were looking at oddly, trying to guess if she had Down syndrome or not. I am open to that being paranoia but I am used to people looking at my kids in questioning ways. People have asked me outright if they were adopted. Some would do the subtle "Wow your kids are so dark." Which is shorthand for what race are your children? I usually just ignore them because really it's no one's business. But with Jude I find myself blurting out to total strangers that she has Down syndrome.
Blink.
Why do I not blurt out that Rowena's father is Mexican.
Or that Umberto is a boy?
I never spent hours getting hung up on my kids darker skin, their chocolate eyes or dark hair. I was never concerned that people would guess they were Hispanic. Aka I was proud. It was not something that I felt had to be hidden. And I realized that when I blurted out that Jude had Down syndrome, it was with a sense that I was revealing something not so good. Then I was pissed off at my self...because I don't want to feel that way about Jude or about anyone with Down syndrome. It was a painful but important moment for me.
You see Jude is not just someone who has an intellectual disability. She is also Hispanic and female. She is a sister. A future lover. She is more importantly human and as such deserves to be seen with pride. Pride. Not awareness. And this is important because I have felt compelled since having my children to install in them a sense of pride in who they are as people...in all that complexity. They live in a world that loves labels. They are racialized, gendered, intellectualized. There are so many boxes to check.
The Hispanic community is one that is often invisible to many people especially the community of undocumented workers. But lately they have been brought to light...as a demonized other that is responsible for the economic down turn. They have become a convenient target for the fear of a society being eaten alive by capitalism. But you know, the community is not promoting awareness. They are not putting up cute memes of their loveliest members. Instead they are fighting.
And through their cry for justice they are also making people aware. You know these kids right? They're the dreamers. The kids who were brought over when they were young by parents desperate for a new life. Maybe even a better life. These are the kids who GA doesn't want to let into college. And they're not putting sweet memes up. They're fighting. And I am proud to stand by them in their fight.
What I'm realizing is that there is another fight out there, and that it's a fight that needs more coverage. A fight for another group of people that is too often ignored. People with intellectual disabilities are often denied real health care. They are brutalized by the police. Sometimes they are even murdered. People with intellectual disabilities are at a greater risk for sexual abuse. They live in greater poverty than the general population. Luckily there are people out there fighting. Check out Down syndrome Uprising and join the revolution. Because you know I am proud to be a part of this movement as well.
This is who I am. And this is who I hope Jude becomes. Like all my children I hope to raise a beastie who fights the power.
Wednesday, October 02, 2013
The Space Between
When the Dr. called to tell me that my fetus had Trisomy 21, I remember the moment quite clearly. In that moment, before I cried or raged, I felt nothing. Not a numb kind of nothing. The kind of nothing that comes between breaths. A crystallized feeling where you simply do not know at any level what will come next. A moment where you have no idea what to even image. I have never ever felt this way in my life. I always knew where to place my foot so to speak. But in that moment, there was no script, no map, no path. I felt that my foot was hovering over an abyss of unknowing. It was not a negative space or a positive space. It was a nothing space. The space in between.
You see there was no script for this moment. Bourdieu would say that my doxa did not include this scenario. Butler would say that I was facing that misstep between the construct and the experience. I simply remember that I hardly dared to breath. That my skin felt inside out. That I was walking wrapped in cotton balls. That my words would shatter against the air. That touch would burn.
When I look back at the posts I wrote about that time, I realized that I was constructing as I went along. Trying very hard to find the words that would build some feeling about what it meant to be carrying a fetus with Trisomy 21. To bear that fetus as a baby into the world. To raise a child with Trisomy 21. I didn't know. I knew one story, and I had rejected it before Jude was even an imagining.
Because I had company in those early days it was very hard for me to construct a story. My mom had started to read "Expecting Adam" but I wasn't ready for much. I tentatively did some Internet searches. I read one or two stories but I couldn't fit into them. They were too big or too small. So I existed in the space between. I relished my friends saying "It's okay. It's good." Early on I did not hear that Jude was a special blessing, or any apologies for something that did not need to be apologized for. I knew those things would come because of the stories I had read. But for some reason, on that first day, they were not said.
Eventually I started to read, and I tried to fit on the stories. I told H that I was grieving the child I thought I was having, and he scoffed "What the hell does that mean? How is Jude NOT the child you were supposed to have?" I pretended that Jude was a miracle sent from God. I was being tested. God was giving me something that would be hard and beautiful. I did not need H to challenge that story. I could barely stomach it in my own head. I was so desperate to find a story that would fit. I was having a hard time writing my story because it was unknown to me. So foreign that it defied telling, one could say.
You see I didn't KNOW anyone with an intellectual disability much less someone with Down syndrome. I had never really imagined myself with a child who had Down syndrome. I had not prepared for this script. Strangely enough I knew how to feel if this child had been dead. I had gone to that dark place, and I knew what one should feel in that circumstance. But this one? I was lost, fumbling for meaning, for words, for language. All because I didn't have the encounters to know. To make human something that at this point was only an abstraction. A set of marks on a piece of white paper. There was no baby to make sense of what I was being told. Only a rather fuzzy ultrasound picture.
Before we moved to Athens, I wrote a thesis on how humans use stories, memoirs, to make meaning of their past in ways that reconcile that past to the present, to the future. I had chosen an odd memoir called Keep Sweet that defied many of the conventions of the way deconversion memoirs are framed. Debbie Palmer, a former member of the Fundamentalist Church of Jesus Christ of Latter Day Saints, seemed to be fumbling. She was in a place where, I argued, where she could see those gaps between what we know and what we come to find out. For the first time, I truly understood that moment. She was in the space between, and she was struggling to fit a script into this experience. She was grasping to make something of this nothing. It is like sculpting with sand and it does make for a pat kind of story.
Now that I am a bit further into this journey, with a baby sleeping on my lap, in a world where I think about Down syndrome every day but not about Jude having Down syndrome everyday, I realize that my experience is vital for a couple of reasons. Reasons that have often made me feel like I am a bit on the outside of a broader community. Because here's the thing, if people with Ds, and ID were really included then there would be a script. I'm talking about an inclusion that recognizes the humanness of all people. An inclusion where we would encounter a person with Ds on our daily walk, in the store, on the bus, in our class room. A world where we would engage and interact and develop relationships. If I, in my 41 years can only recall meeting and talking to someone with Down syndrome twice in my life then it does speak to how much further we have to go. And it's not just meeting people with Ds in the flesh, it's the fact that I don't read about people with Ds in academic papers. That I don't see their ideas in the boarder media. I don't see their art being talked about in art circles. When I read or hear about people with Ds, it is only in isolated places where I go only because Jude had Ds.
If the social world comes to reflect that the world is filled with difference, difference in abilities, colors, genders, etc than we have a richer script from which to draw. If we see kids with Ds on our TVs (yes, I know Glee but I'm talking about more than one show), if we see them not just as special additions but as fully included in the experience of life, we offer more. We side step the need for grief because having Ds could be just another variation in the vastness of experience. We need more scripts, more ways to understand that moment in between. Our stories are going to shape how another woman, like me, experiences that in between. I'd like to take her out of that space faster, so fast that it seems...well, typical.
You see there was no script for this moment. Bourdieu would say that my doxa did not include this scenario. Butler would say that I was facing that misstep between the construct and the experience. I simply remember that I hardly dared to breath. That my skin felt inside out. That I was walking wrapped in cotton balls. That my words would shatter against the air. That touch would burn.
When I look back at the posts I wrote about that time, I realized that I was constructing as I went along. Trying very hard to find the words that would build some feeling about what it meant to be carrying a fetus with Trisomy 21. To bear that fetus as a baby into the world. To raise a child with Trisomy 21. I didn't know. I knew one story, and I had rejected it before Jude was even an imagining.
Because I had company in those early days it was very hard for me to construct a story. My mom had started to read "Expecting Adam" but I wasn't ready for much. I tentatively did some Internet searches. I read one or two stories but I couldn't fit into them. They were too big or too small. So I existed in the space between. I relished my friends saying "It's okay. It's good." Early on I did not hear that Jude was a special blessing, or any apologies for something that did not need to be apologized for. I knew those things would come because of the stories I had read. But for some reason, on that first day, they were not said.
Eventually I started to read, and I tried to fit on the stories. I told H that I was grieving the child I thought I was having, and he scoffed "What the hell does that mean? How is Jude NOT the child you were supposed to have?" I pretended that Jude was a miracle sent from God. I was being tested. God was giving me something that would be hard and beautiful. I did not need H to challenge that story. I could barely stomach it in my own head. I was so desperate to find a story that would fit. I was having a hard time writing my story because it was unknown to me. So foreign that it defied telling, one could say.
You see I didn't KNOW anyone with an intellectual disability much less someone with Down syndrome. I had never really imagined myself with a child who had Down syndrome. I had not prepared for this script. Strangely enough I knew how to feel if this child had been dead. I had gone to that dark place, and I knew what one should feel in that circumstance. But this one? I was lost, fumbling for meaning, for words, for language. All because I didn't have the encounters to know. To make human something that at this point was only an abstraction. A set of marks on a piece of white paper. There was no baby to make sense of what I was being told. Only a rather fuzzy ultrasound picture.
Before we moved to Athens, I wrote a thesis on how humans use stories, memoirs, to make meaning of their past in ways that reconcile that past to the present, to the future. I had chosen an odd memoir called Keep Sweet that defied many of the conventions of the way deconversion memoirs are framed. Debbie Palmer, a former member of the Fundamentalist Church of Jesus Christ of Latter Day Saints, seemed to be fumbling. She was in a place where, I argued, where she could see those gaps between what we know and what we come to find out. For the first time, I truly understood that moment. She was in the space between, and she was struggling to fit a script into this experience. She was grasping to make something of this nothing. It is like sculpting with sand and it does make for a pat kind of story.
Now that I am a bit further into this journey, with a baby sleeping on my lap, in a world where I think about Down syndrome every day but not about Jude having Down syndrome everyday, I realize that my experience is vital for a couple of reasons. Reasons that have often made me feel like I am a bit on the outside of a broader community. Because here's the thing, if people with Ds, and ID were really included then there would be a script. I'm talking about an inclusion that recognizes the humanness of all people. An inclusion where we would encounter a person with Ds on our daily walk, in the store, on the bus, in our class room. A world where we would engage and interact and develop relationships. If I, in my 41 years can only recall meeting and talking to someone with Down syndrome twice in my life then it does speak to how much further we have to go. And it's not just meeting people with Ds in the flesh, it's the fact that I don't read about people with Ds in academic papers. That I don't see their ideas in the boarder media. I don't see their art being talked about in art circles. When I read or hear about people with Ds, it is only in isolated places where I go only because Jude had Ds.
If the social world comes to reflect that the world is filled with difference, difference in abilities, colors, genders, etc than we have a richer script from which to draw. If we see kids with Ds on our TVs (yes, I know Glee but I'm talking about more than one show), if we see them not just as special additions but as fully included in the experience of life, we offer more. We side step the need for grief because having Ds could be just another variation in the vastness of experience. We need more scripts, more ways to understand that moment in between. Our stories are going to shape how another woman, like me, experiences that in between. I'd like to take her out of that space faster, so fast that it seems...well, typical.
Saturday, September 28, 2013
Why We Do What We Do
I have already written about how Umberto decided he wanted to do more schooling because he wants to prepare for college. And so far things have been going smoothly. We have not had the struggles we had last year. When I ask Umberto to work, he comes to the table willingly. I have also learned to not be so rigid. If Umberto wants to have a friend over, or if he just bought a Xbox game (cough GTA V cough) then we just rearrange things. Sometimes social studies sucks up more time than I had planned so we don't have time for writing. We just roll with it. Letting go of the stress of having to get things done opens up a whole new atmosphere to schooling for all of us. Things are less angry, less hurried. When plans fall through I don't feel the intense stress of having to get it done. We have time. All the time we need. Because really if we don't finish Math lesson 23 today, the world will keep spinning. Before, I would rush, rage, and end up just giving up.
Now I can see that it was a combination of things. My attitude. Umberto not being ready. So here we are now in just the right spot. And it's not been totally easy. My house is a mess. I feel like the other kids are getting a bit neglected. Umberto needs me to right beside him for most of his work. We're working on independence, and I know it will come, but right now it's a bit confining. The positive in this side by side work is that Umberto and I have become very close. I think it's often the case that a child reaches their teen years, they drift away. It's nice to not find that happening; to have the opposite occurring as we work together. We can get creative about where school happens as well. So sometimes we do our work on the floor while Jude plays, giving us a few minutes to be together between baby care.
Now I can see that it was a combination of things. My attitude. Umberto not being ready. So here we are now in just the right spot. And it's not been totally easy. My house is a mess. I feel like the other kids are getting a bit neglected. Umberto needs me to right beside him for most of his work. We're working on independence, and I know it will come, but right now it's a bit confining. The positive in this side by side work is that Umberto and I have become very close. I think it's often the case that a child reaches their teen years, they drift away. It's nice to not find that happening; to have the opposite occurring as we work together. We can get creative about where school happens as well. So sometimes we do our work on the floor while Jude plays, giving us a few minutes to be together between baby care.
In addition, to our closeness, I've watched Umberto develop new interests. He has ended up really loving history which surprised, I think, us both. And he has learned to take pride in things. The other day he yelled "Yes, a 100 on that the Math quiz!" and it came from him not because we grade or because we even emphasis that kind of accomplishment. But for a kid who often struggles with academic self worth it was a pretty awesome moment. Maybe because it came from his own sense of accomplishment as opposed to pressure from others.
But I think the neatest moment came when Umberto had to build a diorama on a habitat of his choice. He was pretty blah about it, and it kept getting pushed to the back burner by both of us. I knew it was going to take a lot of effort on my part to get him started and since he was not feeling it, it would likely lead to conflict. I thought about just skipping the assignment. I've always though dioramas were kind of boring, and a waste of time anyway. Memories of horribly failed projects from my own child were foremost in my mind. I always had grand ideas that never quite coalesced into reality.
Still it was his first science project and I thought it would be good to just bull through and do it. We could mark it as done and then decide if it was something worth doing again. So last Sunday night, I found a shoe box, and said "Let's do it." What happened was pretty awesome. Piper and Camille were instantly interested when I brought out the air dry clay. I explained to them Umberto's assignment, and they both wanted to help. Soon we were all sitting on the floor in the living room, the Ipad propped up in front of us with images of coral reefs before us, surrounded by National Geographic magazines and clay. Piper was making sea turtles, and Camille started in on shark. Umberto was looking through the magazines, and talking about making a clown fish. Then we downloaded some coloring sheets, everyone peeking over my shoulders as we scrolled through pages of options. There was coloring, cutting, and discussion.
On Wednesday when the clay was dry so we started to assemble the diorama. At first it was just Umberto and I. Camille came out and wanted to be involved. I stepped back and let them go to town. They came up with creative ways to get the big things in the front, and the smaller things in the back. Umberto used H's wedge idea to have the fish appear to be standing. He also came up with the idea of how to hang the seahorse. Camille made Popsicle stick props to keep the coral upright.
In the end, we had a group effort. A family created project that arose from something that I was dreading. And it's what I really love about homeshooling. The improvisation. The unexpected fun and joy.
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