The Trouble With Food

The trouble with food, I've often explained to people around me, is that as an addition it's awfully hard to kick. I can't go cold turkey because I need to eat. And while yes I could give up all the sugar, fat, fried goodies, it ultimately doesn't matter as I can binge on Vegetarian Shepherd's Pie. There are no restrictions on my addiction, like most junkies, if I can't get the best fix, I'll amble on over to the next best.

I eat for a variety of reasons. I'm depressed, bored, happy, hungry. Insert emotion and there is a food. Food is always a part of the celebratory aspect of any holiday. I bake cookies. I create casseroles loaded with cheese and eggs. We eat our way through Christmas morning, Thanksgiving Day, and Easter. I don't know how to create a holiday that doesn't include copious amounts of goodies. My Pinterest board is a testament to this fact. I also really do love food. I love new flavors and trying different cuisines. I love to create in the kitchen taking the raw ingredients and making something nearly magical with them. Cooking is a way that I show that I care, that I love the person for whom I prepare the food. But food is also a drug for me, and it is in the intersection of these two experiences of food that I lose my way.

Over the last few years, I feel like I've been caught in a whirlwind of changes. My expectations and plans for my life have been swept up and transported somewhere else. I don't do well when the careful to do list on which I've worked so diligently is snatched out from under me. So I've sat here in Athens for just about three years, and ate my way through the many emotions I've felt.

This was a trend that began in Charlotte. When I was rejected from every graduate school I applied too (even the safety ones) the consumption began. I ate until I was uncomfortably full at first, and then I began to eat past that point. I'd lay awake at night sick with food I had barely tasted. If I didn't overeat during the day, I'd creep out into the kitchen in the early  morning hours to quietly indulge while standing in the dark at the kitchen encounter. One the rare occasion when H found me, the shame rode me. I blushed in the darkness but I didn't stop eating. By the time we moved to Athens, I was already spiraling deeper into my food addiction. Deeper than I had been for along time.

And once in Athens, set loose from scheduled work, due dates, and lesson plans, I felt helpless and useless. I floated on an ocean of too much time, and I ate my way through the fear, the anxiety, the depression.

Now I'm starting to see a way out, and I'm trying to swim but I'm loaded down with the addition that just doesn't go away when it's out lived its usefulness.

Two weeks ago, I made cinnamon rolls. I felt safe in making them as the beasties are crazy about cinnamon rolls. I was wrong. It wasn't safe. No one liked them but me. They sat there in their creamy frosting glory. I ate one after dinner feeling safe and slightly virtuous even though it annoyed me to feel this way. Food isn't dangerous. It isn't moral. It's not good or evil. I repeated these things to myself as I ate half a roll. I felt full but it wasn't unpleasant. I went for a walk with the little beasties and H. When we returned, I ate the other half. Throughout the night, I couldn't keep away. I should have thrown them out. I should have frozen them. I didn't do those things. Instead I ate them.  I ate several. And by midnight I was nearly writhing in pain. I ate them when I could feel the gluten rising up in my chest. I ate them when it was clear that my tricky gall bladder was going to kick my ass. And then I ended up in the ER. I sat there shamed thinking about how I had eaten myself into this place. There was no rehab to check me into, only the quiet disdain of the Dr. who lectured me on my bad eating habits. Like I didn't know hatt one shouldn't eat ten cinnamon buns in one evening. Not that I told him this thing. He made that assumption looking at my fat body.

I've learned my lesson, I thought as H drove me home at six am. I have to get control of my eating. And for a couple of weeks I did okay. But then last night, I ate cupcake after cupcake. I inhaled chips. I asked Piper to bring me a cupcake as soon as H went to bed because I was ashamed that I was eating this when I wasn't hungry. As soon as I bit in to the soft crumbly chocolate, I knew it was going to hurt, and I ate the damn thing anyway. I woke up at four with the now familiarly stabbing pain that comes from a gall stone. I walked, took a shower, sat on the couch, and waited for four hours until the pain went away and I could sleep.

As I watched the sun rise over the hospital next door, I experienced a total helplessness. If I was addicted to drugs or alcohol, I could go to rehab. I might even encounter sympathy instead of the lecturing shame. Why I often wonder do we assume that people who are addicted to food only need to show some will power? I have will power aplenty as anyone who knows me can attest but in the face of food, I am very very weak.

World Down syndrome Day 2014--Still Outraged

Okay so I lied. Well not really. The blog domain ends on March 27th and with it ends Green Tea Ginger. But she's still got one last post in her. Tomorrow is World Down syndrome Day. My second one. Last year, I responded to the accusation that I was angry, too angry. Too outraged. And I spent a whole year addressing why I was outraged. I regret nothing as they say. After all there was so much to be outraged over, and there still is so much out there. Of note this year is the murder of Louis Ruiz, a beautiful baby boy who happened to have Down syndrome. His mom murdered him under the guise of ending his suffering. Already so many stories show her as being an angel of mercy. After all our kids suffer right?

Maybe not so much. I mean, all of us suffer at some point. I suffered horrible gall bladder pain a few weeks ago and had to go to the ER. No one suggested I kill myself, or maybe my husband would be a saint if he put me out of my misery. No one said if he did kill me we could blame it on his ignorance about gall bladder issues. I know it seems I'm making light but I'm really not. Most of us at sometime will suffer pain, likely quite a bit of it over time. Some of us will get cancer. Some of us will get into accidents that might lead to life long bouts of pain. We will suffer emotionally from heartbreak, depression, anxiety. But the idea that we should be murdered for these things strikes most of us as quite horrible. And it's really the same for me when I hear someone describe the murder of a child with a disability as a mercy killing.

This year WDSD 2014 is focusing on health care or more precisely access to health care for those with Ds. It strikes that me the theme of suffering is actually very relevant to this year's topics. When people are seen as suffering anyway, there is often an attitude that one shouldn't give them as much health care. Why bother after all? There are too many stories of people with intellectual disabilities being denied transplants simply because of their ID.  Of course there is also the problem that Down syndrome is seen as a disease (it's not) and thus is associated with suffering. We must continue to be outraged over these wrong ideas, these ideas that quite literally kill our children.

While I can't speak for the whole community of those with children with Down syndrome (nor do I wish to be that voice), I can speak about my life over this past year. You see there has been very little suffering. Well R has suffered a bit over losing her place as the baby but I suspect the new found joy of having her very own BBF is easing that suffering.

Last year, I spent the first few months feeling very raw but I never felt like I was suffering. Neither was Jude. She was a thriving happy baby just like the rest of my babies (well maybe a bit happier than poor colicky beastie boy). We were working on that relationship, the one between a mom and her new baby. Note not on the one between a new mom and her "disabled baby." We were busy falling deeply in love. I felt raw because I knew what others thought about people with Down syndrome, and that new love that was taking root made me want to punch the world in it's big ableist face.

But throughout the year as I fought back against so much bias, I was also living my life with my family. There was precious little pain involved. We had our good days and bad days just like all families. There was so much joy. There were walks in the summer sun. Pool days. There were library visits. Dinners out. New foods to try. Birthday cakes to eat. Christmas presents to wonder over. We were drunk with love so much of the time as we always are in my little family. And one day I woke up and I no longer felt raw. I felt bad for all those people who had the audacity to pity me and my family. I felt bad for all the people who thought we were suffering.

Now let me be clear. I am still outraged. Still angry. There's so much to work to be done to make this a good place for my beautiful, perfect daughter to live. We need change, and we needed yesterday. Children are dying people, and we must address these grave injustices. I urge you to join in the fight. Speak out against those who abuse people with disabilities be it individuals or groups. Call your senators about the Able Act. Fight for health care for all. Treat people with disabilities with dignity. Check your own privilege. And remember that those with disabilities are not alien. They are as much you as you are them. We are all humans, all living beings, all creatures worthy of life.

Extending Acceptance to Myself

For the last few days, I've been down. Actually more then down. Sad, irritable, moody, anxious. I've been laying awake at night worrying over so many things: who likes me, who doesn't like me, who thinks I am awful person, oh no maybe I am an awful person, am I not doing enough with Jude, the homeschooling has been sucky, my writing is filled with errors, why if I am smart did I not get into graduate school, maybe I'm not smart and I've been deluding myself all these years, why am I so big? why can't I stop eating? I feel gross from all the eating but here I am pinning all kinds of cake recipes on Pinterest. This is my brain for the last few nights. This is kind of my brain all.the.time. Of course I'm getting little sleep and this doesn't help the self-defeating chatter that lulls me into a restless sleep most nights.

The other morning, I was sipping my coffee, and settling into my daily dose of anxiety when I started to wonder if maybe I was depressed. Depression does tend to prowl up on me and pounce and still has to bat me around for awhile before I notice it's there. But it seemed an odd fit this time. I was uncomfortable with the idea. Wrote a status update about it and deleted said update. Depression didn't feel right. I was anxious yes. Pretty down about some things. I was feeling insecure. Feeling like a failure. Yes. Check. All these things that come along with depression but...there was something off. Despite some snappy bs with the homeschooling kids, I was pretty content in my home life. I was happy with the few friends I had made in this little town. Spring is around the corner so I had been outside with the sun warming my skin. I had even got to enjoy a little snowcation in between the spring days. Is it possible, I wondered, to feel depressed about what a loser you are but be not depressed about your life? That would be a new one even for me, I thought.

But as I sipped on my coffee, thinking about some posts I wanted to write, I started to think about my own experience with what is likely ADHD. I wasn't sure if I was ever properly diagnosed (I was not I asked my mom) but I remember a childhood that clearly pointed to this category. I was the kid who was constantly out of her seat, who was in dream land (as my teacher's called it) most of the time. I sort of remember being insulated from the jeers and mocking because I wasn't really quite there. But I also remember that whatever made me think the way I did and act the way I did was not a good thing.

"Sit down and be still."
"Can't you stop moving?"
"OMG, stopping talking. All you do is talk."
"Calm down!"
"Stop chewing..your pen, your pencil, your crayon, your clothes, your hair."
"Don't click that pen."
"Stop moving your legs!"
"Just look at this desk. It's a mess!"(I was actually kept back a grade for a messy desk even though I was academically "advanced.")
"Snap out of your dream world."
"Earth to Ginger!!"

And really things didn't got much better when I grew up. I had an English professor tell me he couldn't understand how I could be so smart in class and yet be such a horrible writer. My proofreading skills were dismal (and still are as you've no doubt noticed) because I couldn't sustain the attention to proofread. My spelling skills were lacking and I often used less complicated words so I didn't have to figure out how to spell something correctly. What I could spell was often jumbled with all the right letters in the wrong order. But even with this, college was better than most other places. In college, my ability to focus on many different topics was an asset. I still think I switched from English to Religious Studies because RS allowed me to explore many different areas aka I never got bored. And boredom plagued me. I was always bored. Bored with relationships, bored with school work, bored if a book or movie got too long. Hell if a party went over three hours, I got bored.

Thinking about all this, I wondered why I was so afraid to own or to at least explore my own mental world that many consider a disability. As I finished up my coffee, I went to a site that gives you all the "symptoms" for ADHD. I hit 90% of them. I even read them to my son who cautiously nodded agreement on each one. I also found out that people with ADHD are 7 times more likely to experience depression and anxiety. And a light bulb went off in my head. I kind of think that what's been happening in Athens has little to do with depression and more to do with ADHD.

Being inside my body is rather akin to being inside some place very loud, very noisy and very bright. I think it's why I sometimes have mini break downs when I'm in crowded bright places. Overload. There is a constant stream of chatter, ideas, thoughts, memories and pictures all at once. When I am in school or a very structured job, I am forced to kind of wade into that storm and fish out what I need to function. I do this with very structured to do lists, and with deadlines. I've been quite successful at following through (my professors would have preferred more careful work I'm sure and a lot more proofreading) with papers, etc. But that said it took me six years to finish my BA and another four years to finish my MA (I got distracted. For real.). When we moved to Athens, I went from a great part time job that allowed me enough focus and rigidity to structure my life a bit to a life totally untethered by an external schedule. I've been floating on this sensory overload for three years now. THREE YEARS.

And because I couldn't manage it, I felt like a failure. This feeling bleed into other aspects of my life that I was already feeling pretty low about. Like not getting into grad. school. If I had only studied harder for the GRE, I would be in school right now. If I wasn't so lazy, careless, irresponsible, etc. It's always been pretty easy to beat up on myself. It became even easier when I wasn't tethered to a job or to school. My do lists mocked me as sad little attempts to make myself feel important. Each time I couldn't fulfill a bullet on the list, I abused myself mentally. I called myself names. I sneered at the girl who thought she was smart enough for a Ph.D. I snickered at her dreams to be a writer. "Look at you," I snorted, "What a loser you are! You can't even focus enough to do the damn dishes. Your kids are feral! You can't write a sentence without eight spelling mistakes. You're not only not smart, you're not committed." I started to eat uncontrolably, often eating myself into sickness. I would consume bags of Hershey kisses without even pausing to taste the flavor. The eating was automatic. And that lead to even more self-hate "You're huge!" You have zero will power!" What kind of person eats until they are sick?" "You're disgusting." This is my head nearly every day.

What occurred to me the other morning after I got done reading the lists that so explained me was that here I was fighting so passionately for my daughters to find acceptance in the world, I had forgotten to give myself that same radical acceptance. I had a million reasons. I wasn't officially diagnosed. I was just looking for an excuse to be a minority. People were going to scoff at me. I was just trying to excuse my innate laziness. But what I realized was that I owe myself a chance at this acceptance. I owe myself a chance to explore a road that may make it easier for me to accept what is going on in my head, to live with myself. To figure out a way to work with me rather than abuse myself.

This is partially why I need a Facebook break. Facebook in some ways is wonderful for me. The constant flow of such different information is exciting and interesting. (H said it's like the Walmart of the screen). But it's also really really hard for me to negotiate so many different social relationships, to figure out the nuance of one conversation and not carry that nuance into another. I make a lot of missteps while I try to handle the social media world, and have alienated a lot of people unwittingly (sometimes wittingly and I'm okay with that part of it). I end up being really anxious over these things, and then I just kind of explode from too much. This is why I have to keep going away for awhile. But this time I also really want to pursue a diagnosis and look at ways to work with the ADHD. I am even allowing myself to be open to the ideas of meds. This may not be a full time thing but I think that at least right now I need something to help me get through all the noise.

And mostly I just need to spend some thinking about what radical self acceptance is going to look like for my mind. What will it mean to re-frame ADHD as not something negative but as something positive?

Thinking About Love

Yes, yes, I know it's very common place to be thinking about love on Valentine's Day but if it helps ease your worry at me being common place, it's not necessarily romantic love I've been mulling. The Boycott Autism Speaks movement (which I 100% support) is having a flash blog today called "Love Not Fear." Of course being us we never did get anything off the ground although C and I discussed it a bit. C is always puzzled that people want to end Autism and the hate shown towards those with Autism. She's also puzzled at race hate as well. "It doesn't make sense." she'll tell me. She gets very angry when she hears people use the "R" word, and she tears up that people say awful things about those with Ds. Whenever people comment on how Autism has stolen their child or made them child a "robot," I think about these moments with C. C doesn't always process emotion the way I do but she is an incredibly feeling and compassionate child (most of the time, she's a kid and she has a lot of siblings ya know).

And I started thinking about love even more. I am in love with my family so deeply. I love my kids with an intensity that is frightening. My biggest fear is hands down losing those I love. Even the thought of living without my children and husband is a dark space that I can't really touch without feeling a little sick to my stomach. I have struggled with this love over the years because it scared me. I didn't feel worthy of the love I get in return. I was scared that something was going to happen and that I was going to lose this love. I'd do things to put a distance between H and I. I'd try to hold everyone a bit away and to close off tiny bits of myself in an attempt to not get hurt. But in the end, I decided to abandon myself to this love. To let go and fall.

Last night I started to think again about love, and about acceptance. A bit back I wrote that I thought we could love our children but that oftentimes we don't respect them, and I was called on that by a few bloggers. This is what came to mind last night when I thought about love not fear because I sometimes think love and fear are not mutually exclusive. Let me piece this out.

I try to live my life in awareness that dichotomy are just that dichotomy. I am not convinced that we can not place love into the categories of real and false. I think sometimes that love leads us to us places that don't look the way we imagine love in a perfect world. Sometimes love leads us to be petty, narrow little people. Sometimes love makes us feel scared.

Here's what I'm getting at. What happens when you have a child that has a condition or is rather diagnosed with something that you have been taught to fear your whole life? Does the fear you feel at those words mean you don't love your child? I can't answer this for everyone but I can answer it for myself. Yes. Resoundingly so. I loved Camille even as I began to suspect that she might have Autism. And I loved Jude even when I got the call that she had Down syndrome. I never stopped loving my children even as I was tormented with fear about what these words might mean.

For a very brief amount of time I began to understand what people were doing when they said "I love my child but I hate Autism/Down syndrome." For a brief time. People say this as a way to avoid having to make a big mental shift in how they think about these conditions. If they can think about their child as separate from these things, they can then go on to keep loving their child but have a way out of accepting their child as is.

This is where I think the part about acceptance is a big deal when we come to think about love over fear. Love over fear means that we didn't love before rather it means that we have to push through what we fear to come to a new understanding about things that used to frighten us. And we have to do a lot of soul searching about the kind of bias that lead us to fear that thing in the first place. Acceptance is vital here. Because when we accept our children for who they are, when we stop fearing that something that can't be separated from our children, we not only choose love but we choose to love without fear.

And it's not this is love more real but perhaps we can say it's more just. Love, the kind of love that changes the world, always means letting go of our preconceived ideas about things. For me that meant some intense reexamination of my ideas about intellectual disabilities. It's also meant that I have had to lay my parenting pride aside and listen to other voices. It's meant that I have to go against some pretty accepted mainstream ideas about therapy, etc. Accepting my children has also meant in a hard but beautiful way accepting myself; coming to realize that a lot of the things about my self that I have stifled or hated or felt ashamed of were things that I could be celebrating or at least accepting instead of suppressing.

Love is so much harder and complicated then the romantic dreams I envisioned when I was a lonely and awkward teenager. The romance books I consumed hadn't quite prepared me for the love I encountered in this world. I spent many years being in love with people who loved what they imagined they could change about me. They loved the way that my body could look if I only stopped eating so much. They loved the way my mind could be if I read better books or went to college. They loved the way I could be if I wasn't so depressed/emotionally damaged. They loved the way I could be if I could hide the quirks, the social anxiety. But it wasn't until I meet H that I found someone who love me for who I was, who accepted me as given. And over the years, I have begun to heal, to come out of the walls I hid behind. It's amazing what blooms when one is accepted and loved for all their many selves. And when I realized this, when I realized how freeing it was to be accepted how could I not wish this for my children? I do not wish to take away anything from them. They will grow and change into different beings each year as happens with us all but I will do my damnedest to ensure that this growing and shaping happens in a space where they are accepted. This is why I will not change my child to fit the world but demand that the world change to fit my child.

The Act of Telling

I started my first blog years ago. When I first began homeschooling, I used blogging as a way to record the day to day with Beastie Boy. At the time, I was also in graduate school, and since so much of that was starting to leak onto the other blog, I started Green Tea Ginger, taking my name from a box of Tzao Tea. In the early years, the blog was often silly, sometimes academic but rarely personal. There was a reason for this. I published something, I can't even remember what, that upset H because he felt it was too personal. We fought. I got angry, deleted the blog, and sulked for a few days. If I couldn't publish what I wanted, if I felt constantly censored then forget it. But after the pity party, I realized that this was not my life alone I was recording. I didn't have the right, as an ethical person, to write about about a life shared unless all those who partook in the sharing had a say. And from that point on, I kept things pretty surface.

Until I started to work on my thesis which was on telling and how telling is not just about making sense of realities but also about shaping realities. Someone suggested I write my own stories as a way of experiencing this writing. This is when my blog took a turn toward the personal. And it's also began the moment when I started to have to seriously ponder the ramifications of tellings. Because telling is never done in isolation. Beyond just the obvious considerations of those whom share your life, there are broader societal issues about who gets to tell, and what gets to be told. 

When I had Jude, and began to write about disability all these thoughts, planted so long ago, began to coalesce. Since leaving the academy,  I had begun to write more and more about my life. About my children. I had tentatively told stories about my relationship with Beastie Girl 1. And I had been told I was brave for sharing those words. I'll admit to a little thrill at these words. Being called brave gave my sad insecure self a little boost. And of course like most of us I had been conditioned into thinking that telling all was a brave thing. But even then I was confused about why it was brave to say I had a shitty experience with my kid and I kind of messed it up. Not because of her but because of my expectations and how I reacted to what she was trying to tell me. It wasn't until I had Jude that I knew. Brave was the word claimed by special needs parents. It took bravery to raise "these" kids after all. Brave was the word used by others to mark "our" experience.

But is telling all really such a brave act? Or is it a dangerous kind of shaping? A kind of story telling that is making it okay to apologize to those who kill their children with disabilities? In other words are these narratives shaping the very experience of those with disabilities? Are these tellings shaping how society sees our children? Wonder if our eungenic problem isn't about abortion but about telling?

Let me back up. I didn't blog much for the entire year of 2012. Looking back I wonder why. I had a lot going on. I converted to Catholicism. I was pregnant. I found out my fetus had Down syndrome. But I didn't blog a whole lot. I wanted to. My impulse was to pour out all the shit I was thinking and feeling on this space. But I didn't. I was depressed. Had been depressed for over a year (and not because of Jude...depressions isn't always about having a "special needs kid."). What stopped me was that what I was experiencing was ugly and personal. Too personal to put out there. It didn't need to be put out there. It certainly wasn't going to help me nor was it going to help anyone else. After I knew about Jude, I worried that it would effect how others saw Jude, and I didn't want this to happen. What I was feeling was about my own shit not about her reality, and I knew how powerful words can be in shaping how people see others. Even in the depths of the worst of my feelings, I knew this wasn't even remotely about Jude but about me. About yucky selfish me who had some shit to work through.

What I have come to realize is that it is not brave to keep sharing the same damn narrative about grief and despair over a Ds diagnosis. It's not brave to perpetuate that you lose you child to Autism. Or that Autism is something to feel sorry for.  It is not brave when your fear of something that you see as so different colors your entire perception of your child. Fear of difference too often leads to violence, and your supposed bravery of talking about that fear as something valid, as something that really is to be feared excuses that violence.

While you may have the right to your experience (and frankly I think is debatable..do you get right to be racist, ableist, sexist?), what you have to consider is that your experience is not your own. At least this is what happened to me. I don't get to tell Jude's story, or rather I could but if I do that I play into the power that already strives to keep Jude separate, oppressed different. I am creating a story that I certainly am involved in and will help to write over the years but it is not only my story and if I over share I do more to make it more my story than hers. When I stopped awhile back to think about what this means, I realized that this collaboration means me stepping back, about choosing to not let this be about me. This is about Jude, and about her right to be a fully human person in this world. This is about Camille and her right to be a fully human person in this world. I am their parent, their guardian, their teacher, and I have a choice. I can choose to tell a story that makes it about me. Or I can step back and wait until they tell their story (something which is happening beautifully with Camille). And while I wait, I will write not about the burden they are on our life (they're not by the way), nor about how they are super heroes. Rather I will continue to write about the injustice they face in this world. I will remember that the words I put out there are an act. An act that can build up the structures of power as they are, or an act that tears down and rebuilds.

Running Tights

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.

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.

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.

"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

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 with my girls. 

Grams getting a kiss from R.

Merry Christmas from a group of wild beastie.

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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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.

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.

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."

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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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.