Wednesday, March 27, 2013

I Want to Write About Something Else

But I can' heart is still breaking for Ethan Saylor and his family. His mom will never get to hold him again. I look down at Jude and I see Ethan. Ethan could be my son. He could be your son. I am tired of hearing that he was angry, defiant. I am also sick of comments like "A person with Down syndrome who is angry is scary." I worked with developmentally disabled adults in college. One of my favorite clients was a nonverbal woman with Down syndrome and schizophrenia. Most of the time she was pretty chilled and awesome. She enjoyed painting her nails with me and hanging around while I cooked breakfast. But sometimes she had episodes and they were, honestly, a little scary. But it never occurred to me as she started throwing things or when she came at me to throw her down and handcuff her with three sets of cuffs. There were other ways to protect her and myself. If I, a poorly trained and underpaid aide, could handle these moments without killing her, I suspect that the highly trained officers in Ethan Saylor's case could have shown restraint.

What it boils down to is that they didn't want to bother talking him down. He wasn't worth their time or effort. He had Down syndrome.

There are a couple of points I want to draw on tonight.

First, remember my fact about how people with Down syndrome are not happy all the time? Remember how I said they get angry, cry, have the full range of human emotions? I suggested that by denying people with Down syndrome the right to be emotionally human we deny them some humanity. I would suggest that this case is a prime example  of how this comes about. I wonder if the security guards were reacting to Ethan not acting like a stereotype.

Second, I want to publicly challenge the NDSS. I, as well as many others, feel incredibly let down by their public statement after meeting with the Department of Justice on this issue. While I of course applaud any movement for better training and more awareness (there's that word again), I am utterly shocked that there was no push for an independent investigation. I am trying to figure out why our national voice is failing us so hard right now. What are they afraid of? I suspect they are afraid we'll appear uppity, impolite, too loud. It's sort of like when George Takei told us we were hurting our cause by being offended by a cat named "Tarder Sauce" aka "Tard." I wonder if the NDSS wants us to be good little citizens who are humbly grateful  for any scraps that come our way.

I am tired of scraps. NDSS writes "At NDSS, we envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. Ethan deserved to be a welcomed member of his community." I envision such a world for Jude but it's not going to happen if we allow Ethan's death to quietly fade away.  Being welcomed in the community means not being killed, and it also means that when someone is killed in such a way that the community feels outrage at your death. Honestly, it's embarrassing that our national representation is not organizing protest marches and campaigns. If this was a case involving an African-American man or a Hispanic man or a gay man, the organizations representing these groups would have already mobilized.

Again I ask you to please:
Sign the petition for Ethan Saylor at
Go to the NDSS facebook page and leave a comment asking them to do more. Like the comments already there that are pushing for change.
Tell everyone you know about Ethan. Blog about it. Share links on Facebook. Spread the word.
I also invite you to an online vigil for Ethan. Information is here.

Monday, March 25, 2013

We Stand in Solidarity

The other day H was riding his bike home from class. He ran a stop sign and was stopped by a cop. The first thing the cop said to him was "Are you blind?" in a sarcastic manner. The very.first.thing. A couple of attitudes are revealed in this encounter. The first is the casual way disabilities are thrown about in our language. The assumption of something being "wrong" and thus fair game for use in sarcasm, jokes, etc. The second is the baiting. Why couldn't the cop just be polite? Respectful? Instead, he choose to use a tone and language that would make one angry, defensive, afraid. H's encounters with the police are too often filled with this kind of tension. It's almost as if the police want an excuse to throw my husband down and cuff him. Any excuse to violently respond to a situation that is better handled with less violence.

I can easily imagine what Ethan Saylor felt when confronted by three men in uniform as he sat alone in that empty theater. I suspect he felt intimated, confused, and likely scared. He was in a somewhat dark place filled with people, a lot of them from the sounds of it (19 witnesses) who did not understand what was going on with him. A lot of people react aggressively when they are faced with that kind of intimidation. I might act aggressively if I found myself in such a situation.

And what was going on in the minds of the security guards aka deputies? I can't imagine they were scared. It was one man who was sitting refusing to leave. Perhaps swearing from the sounds of it. He was clearly disabled. Maybe it was a slow day and they were bored. After all, three of them of showed up for what could have easily been a one job. What was going in the mind of the employee? Were they really scared they'd lose their job? Or were the annoyed that they had someone who wouldn't leave.

The only answer I can think of is that they didn't see Ethan as worth the trouble. Perhaps they didn't really see him as human but rather as a disability that made them uncomfortable. I don't know. But I have no proof of those things.

What I do know is that THREE off duty deputies working as security guards wrestled Ethan to the ground and cuffed him with THREE sets of handcuffs because he was "acting defiant". They left him on his stomach in a compromised breathing position and only rolled him over when  "people" around realized he was in distress. No word on who those people were. And the press release says that what killed Ethan was Down syndrome. Yup, you read that right. Not an excessive use of force. Down syndrome. And ironically they may be right. Because it seems that what killed Ethan was ignorance about Down syndrome. And that's being kind. I just might go so far as to say that it was prejudice. An inability to see Ethan's humanity.  Even more puzzling is that Ethan's death has been ruled a homicide but the deputies are not being persecuted. Huh? So I guess Down syndrome caused the homicide? Hmmm. The release goes onto say the deputies acted in accordance with their training. What a sad, sad thing.

Personally, I'm pretty outraged. I am outraged that I can't seem to get the media interested in this case. I am outraged that so few people outside of the Down syndrome (and sometimes with in) don't get it. I think we need to make a clear statement that our children are worthy of outrage. Ethan Saylor lost his life over a $12 movie ticket. What does this say about our values?

Today I have emailed several news organizations including Democracy Now! and Daily Kos as well as my local papers. I have also contacted various advocacy groups and am working on writing something up for a Socialist news site. I am  brainstorming ideas for an Internet vigil or some kind of campaign so that we can remember Ethan Saylor. Please take some times to go over to Down Syndrome Uprising and check out their action plan! Take the time to sign a few petitions to ensure that justice is served. Thank you.

Thursday, March 21, 2013

Why I'm Outraged

My second year of teaching, I took a training class for teaching AP English. During our lunch break, we started to talk about race. I can't really remember why the conversation started but the fall out is forever etched in my head. I mentioned at some point that my husband was from Mexico. One of the teachers, a white woman in her early 50s who taught at on the "premiere" public school in Charlotte, asked me if I had children. I said "Yes. Two a boy and a girl." (other beasties weren't born yet and this could have been a pivotal  moment in my desire to out breed the idiots).

"How could you do that your children?" she exclaimed.


" WHAT to my children?" I asked.

"Well you know kids who are biracial have such hard lives. They don't know where they belong."

For a moment I was kind of stunned. Was this woman giving me shit for letting my kids be born? Really?

"Let me get this straight, you think my husband and I shouldn't have kids?"

She never said yes but just kept replaying the same refrain."Bi racial kids have no place in the world."

And from that moment is was pretty clear that I was going to be advocating for my kids until  people realized that  there was a place for "bi racial" kids in our society. The fight has gone on indeed. From fighting with my son's school when he was in K about his definite non-need of ESL classes to teaching my children how to respond to people making comments like "What language do you speak?" (Camille's answer for the record was "Pony Rainbow Language!") and "Did you know that all Mexicans carry guns in their pockets." We have to teach our children to be wary of law enforcement because brown people are not always treated as fairly as white people. We've had to explain why people tell their father to go back to Mexico. Why we go to protest marches to help the children of undocumented workers get the education they deserve. Life in our world has never been based on assumption of acceptance. It's been about learning to turn the frustration and anger into righteous outrage. And now I see the fruits of those efforts in my daughter's fight for endangered wolves, and my son's responses to people who used the r word.

When I was told Jude had Down syndrome, I dealt with my feelings through books. Of course I read all the "how to" books and the memoirs but I also began to read in disability studies. Why? Because I already knew that I would be advocating for Jude. And the more I read the more similarities I saw. In general people don't see a space for people like Jude in the world. We as parents are asked to justify the role our children play. The contributions they will offer. Sometimes indeed if they are even human.  Don't believe me? Do a quick search of "Down syndrome" on Twitter. Check out the abortion rates for fetuses with Down syndrome. Read stories of how Drs and genetic counselors talk about Down syndrome. Look at how little money is funneled into DS medical research. Here's a study done on how people with intellectual disabilities are discriminated against in organ transplant scenarios. Remember Ethan Saylor and if you don't recognize this name, Google it. Don't forget about Antonio Martinez.

This is why I am outraged. I am outraged that my children including Jude have to fight for space in this world. I am outraged that I have to write posts defending their rights to human rights. I am outraged that people don't seem to get that we are all in this together. I am angry that my children could die because of the color of their skin or the shape of their eyes. I am angry that I still have to angry about this.

But I am not bitter because I see in Jude a kind of new hope. H and I have often lamented how so many areas of activism are often separated into their own little circles. Too often this leads to a kind of isolation among the different groups. I personally feel stretched thin across the many groups I believe deserve equality from women to homosexuals to Hispanics and African Americans. In my daughter's beautiful eyes, I see the epicenter of those interests. She is a Hispanic female with Down syndrome who could be gay. She is the daughter of an immigrant and a woman who comes from working class Mainers. We are not rich even though we may be educated. She is the symbol of all that I have to lose if I don't win this fight for a place in the world. Because Down syndrome crosses borders. Perhaps we could say that Down syndrome erases those borders. It offers the opportunity to stand in solidarity towards one great goal.

Wednesday, March 20, 2013

Typical Vs ?

I was going to write this killer post about the intersections of race and disability. It was going to blow your minds. I promise. But then life just kind of got up and shit on me. Well more like puked on me. Since I'm trying to post every day and kind of got lost after our hospital stay and then even more lost while H was gone and my anxiety took over...I thought hell I'll photo bomb everyone instead...and well it just kind of tuned into this story because you know me, I like stories.

Last night started pretty awesome. I was coming off a good Park Day high (minus one incident that is kind of eating at me). It was lovely out yesterday and Jude totally digs being outside. So yeah, we were all chilling out together. There was little of the usual stressed out crap that happens at night around here, and I took some sweet shots of the big girls with Jude.

I'm always really moved with how much the big kids love her. And I had one of those awesome moments when I just kind of fall in love with her even more. It happened with all the beasties and still does. I always feel love but every once in a while a moment happens. This kind of hard shining moment when my heart feels like it's just going to stop because the emotion is so intense. Everything stops and it's just that baby/child there...and it's a moment wrought with joy and fear because to love that hard, that much is always a bit of a scary thing.

And then 1 am happened. I was finally sleeping. I don't sleep well ever and even though Jude sleeps better than any of my babies ever have...well she's still a baby. So I am restless tossing when through my sleep haze, I can hear Piper sobbing. She's been weepy all evening but I chalked it up to her being exhausted. She had a failed sleep over and had come at around 2 am the night before. Then she did a fair the next day. She was beat and clearly over emotional. But this crying was different, panicked sobs and frantic breathing. She was having a panic attack. It was a bad one. We hadn't had one this bad since she started having them a year and a half ago.She thinks she can't breath and starts to freak out that her heart is stopping. 

 H is awesome and talked her down. He had her imagine something that makes her feel good, and had her hold onto that image until she felt calm enough to talk. Her image? Holding Jude's hand.

As she starts to talk, she reveals how worried she was when Jude was in the hospital, and it's clear she's scared Jude is going to die. Of course she's also scared that we're going to leave forever too. She just wants us to all be together. And I can't help but be moved that she feels this connection to us (maybe without a little pathology of course). We talk to her about how incredibly healthy Jude is and that even in the hospital she was never in danger. And I think again about how scary love can be for all of us. There are no guarantees really so every time we love we take a risk.

We finally get her calmed down and eventually she goes to sleep. I'm awake of course at this point so I gorge myself on low fat popcorn and fluffy YA fantasy literature. I lay down to go to sleep around 2:30 and of course Jude needs to nurse so I feed my sweet baby, and snuggle her some more. 

And then Rowena pukes on me...well that came later but still. Barf. All over my sleeping body. Luckily I shielded Jude. I drag myself up and clean up the barf. Of course R has puked about a dozen times already, and she refuses to puke in a pail or on the floor. She was puking all over self but then she started to carry a towel to puke on which is just gross. It's all mucous so I'm not sure if she's really sick or just has allergies. It's gross anyway.

As I wrote this post, I was thinking about the move for inclusion and acceptance...and a lot about this post written by The Unknown Contributor. It was so spot on and as I'm cleaning barf from every surface of my house, and worrying about my sweet sensitive seven year old, I realized that NOT ONCE TODAY HAVE I THOUGHT ABOUT DOWN SYNDROME. NOT ONCE. Right now? Today? It's the least of my worries. Hell she's the only one who's behaving. Inclusion and acceptance have to do with both understanding that our kids might have more needs that need to be meet (aka why we need funding for medical research and education) but also that our kids are just kids. Yo, parenting is hard ya'll. It's clear when you read about the people who abuse, abandon, or murder their own children (not that I feel that way don't worry just pointing out that you know "God doesn't always give special kids to special parents.") I have friends who are struggling with life threatening allergies. Others are dealing with Asperger's and Autism. Some have kids with cerebral palsy. There's people who have kids with anxiety disorders and OCD. And then there are just kids who don't have anything you can point to in a book but they still have shitty days where they yell, tantrum, or puke all over you. 

What I'm saying is that there are days when Jude's DS sucks. I've never had to bring any of my infants to a hospital for a damn cold (but hell I've never had a winter baby either). My other kids didn't get weekly therapy (a pain in the ass because I have to like you know clean). But when I think about it, all the things that I worry about with her? I worry about with the other kids too because life can be shitty and unpredictable. But you know it's the love that carries me through. The incredible bright beautiful love I feel for them all. Jude is really just another damn awesome beastie. What that boils down to for me is that while this life is sometimes tough, gross, and anxiety inducing, it's also the best life I never imagined. I don't want typical. I never have. I want extraordinary, and even on days like this, it's pretty clear, I got it.

Tuesday, March 19, 2013

3 For 21

With a Little Moxie started a mini-blog hop for World Down syndrome Day. Here's my tiny contribution!

Fact: People with disabilities are just as human as the rest of us. This seems so obvious but when you take a moment to look at how people with disabilities are treated in our society it's apparent we have a ways to go. I notice this more now that I have Jude. When walking with her on campus at UGA, I am stunned at the lack of access for wheelchairs as we move about. When I read people trying to justify the use of the word "retard" on the internet (it was just a little joke on Tater sauce right?). When people act when I tell them Jue has Down syndrome. I could go on. But simply put we all need to be aware of the inequality around us and make change to see that happen. This means recognizing the common humanity in us all while also appreciating and honoring the differences we bring to the table.

Fallacy: People with DS are always so happy. I know people mean well when they tell me that all people with DS are so happy, caring, compassionate, etc. And of course I hope that Jude embodies these things just as I hope ALL my children do but when you stereotype a group of people even in a positive ways it takes a way from their humanness a bit. I say this gently because again I realize this is not the intention. In addition, I think that what a lot of people mean when they say someone is happy is kind of a fall out of not being very smart. Jude will experience the great range of human emotion as we all do. And Jude is not stupid. She's going to learn slower, and she's going to learn different but that doesn't mean she's happy and dumb.

And just as proof of the above, here's our picture:

Friday, March 15, 2013

I'm a Republican Because...

Today we're driving behind a huge SUV with a bumper sticker that reads "I'm a Republican because not everyone can be on welfare." I wanted to get out and punch the person in the head. I suspect that person is prolife too. You know prolife only in the sense that they oppose abortion. Everyone else who deserves life has money of course. And if you don't have money, you shouldn't get an abortion but you better not expect any help in raising the kid either. If you're white and the baby is "healthy" or "perfect" you luckily can adopt your baby out. Of course if you're a minority chances are your child will languish in foster care.

When we found out Jude had Down syndrome, we knew we'd keep her. I wasn't interested in an abortion for a number of reasons. But I knew we were going to be judged. I knew people were going to talk about how we were irresponsible. How we were using the system. I suspect there were even some racial slurs thrown about. You know things like how Hispanics can't stop breeding etc. I'm not going to lay out why I think this is unfair. I don't think it's necessary. I wish very much I lived instead in a society that was willing to support each other. To find new ways to help those in poverty. To pay people the wages they deserved.  A society that thinks that good parenting doesn't begin and end with questions of money. 

At one point, when I was weighed down with the fears for Jude's future, I did think about adoption. I was seven months pregnant, and still caught up in the terror of everything that could go wrong. And I began to feel also the burden of judgment. Sometimes when you read what people say about those on welfare, you start to wonder if those people are right. Should I give Jude up to people who could pay for her? Would it not be better for Jude to be with people who were well to do? There was no other reason I thought about adoption. None. I knew we would love Jude. That we could and would care for her. Jude would be valued and adored in our family. More importantly she would know life as a beastie, part of a family who didn't see her as different but just one of them. But it was money, that filthy thing, that made me thing for a very brief period of time that maybe she would be better off. Luckily I came to my senses.

While I understand that of course the financial situation of a child with disability can be over whelming, it strikes me as sad that this even needs to cross the mind of a parent. I wonder how many potentially wonderful parents lost the chance to love a child with a disability because they feared they could not provide. I also wonder if this fear perpetuates the idea of a child with a disability as a burden, draining their parents of energy, money, and time. And I wonder at a society that doesn't want a woman to abort but also wants to do nothing to help if her if she wants to raise and carry said child. 

Our Dr. is the one of the few doctors in Athens who will take Medicaid. While it shouldn't matter, there is a special provision for parents who had a child with disability to receive Medicaid. Yet even these parents often had a hard time getting care. As I was sitting in our Dr's office, waiting to be seen, the room filled up quickly and I listened in on a few conversations. One woman was talking about what a hard time she had finding a Doctor. Offices were telling her they would only take Medicaid  if it was her first child. We had little choice as we sat there but we were lucky that our Dr. is a good one. And he is also a good man. That is clear because he continues to take us even though his practice is very busy. 

For me the saddest part of this story, is that these people are judged. They have to read bumper stickers insulting them. They likely feel shame, as I often did, at being poor. This shame no doubt keeps them from questioning why the system is the way it is. Why those who are poor have so few options. So very reasons to feel pride. Why we feel shame at being poor but we do not question why bankers get bail outs, and why corporations get tax breaks. Instead, we question, if we are worthy of raising children with disabilities. Of raising children period.

(For the record, this is NOT a take down of adoption. I fully support adoption as an incredibly valid choose for many woman. Sometimes the burden is too much especially when it involves a combination of lack: money, support, etc. But i don't think there should be one problem alone that leads to such a momentous decision).

Thursday, March 07, 2013

Jude Under My Skin

A new "virtual" friend commented today about new research that has shown we carry all our children's cells in our bodies, and thus those of us with children who have Down syndrome carry that extra in us as well. I went and read an article, curious as to what that might mean for those with this extra. But there was nothing at least in this article. It's such a far out concept anyway. I mean, all of my children have left behind cells inside of me. Right now. I literally will carry them in me until I die. But the thought that I have some cells with an extra chromosome? That blows me away.

Since I'm not a scientist, my mind of course runs to the poetic beauty in such a thing. This child is who is supposed to be so different left something of that difference inside of me. To me that something means a bond, a tie to her. We are after all different in a rather big genetic way but the idea that I have some of that gene makes me think about what we share.  And when I think of her condition as removing her from me somehow this new idea makes me rethink. After all Jude's presence in my body has left an imprint as real a finger print. Her cells with their third chromosome on the Trisomy 21 float about my body with it's measly two chormosome. She has left that which has made her different inside of me thus creating within me the same difference. Mind blowing stuff right there. Can I say I've never felt prouder to carry a cell?

Wednesday, March 06, 2013

Jude Has Something to Say

Check out this great blog hop: 

You're So....

I grew up in the 80s when the word "retard" was ubiquitous. It was a word slung about with a offhand cruel casualness. Because it was one of many words hurled at me through my childhood, I developed an immunity to its power. I even began to use it myself, and even as an adult, I'm ashamed to say have used an abbreviation cultivated from the holy mother of all swear words. My children even used it at times, although I did at least tell them to stop. But the pain of the word still didn't resonate with me. Until Jude.

Jude is technically mentally retarded. Whenever I read these words it's like someone gut punches me. The images that such a term, even when it's being used in a medical sense, are not pretty or flattering. Now when I hear it I remember the slick casualness the cool kids effected as they taunted the kids from the "special" room. Then I was too painfully insecure to speak up. I was a coward. Those poor teens wanted nothing more than any other teen wants. To have friends. To be safe. To walk through the halls without being molested. Instead they were assaulted by a word that their own Drs. used in describing them.

Words have power. It's that simple. They slash at us on a personal level but they also render deep wounds on a political/cultural level as well. Words are what we use to define other. Words are boxes in which we categorically place humans. At some point, our bodies began to graft to those boxes so that those words are written upon us. 

Judith Butler asks in Excitable Speech: "Could language injure us if we were not, in some sense, linguistic beings, beings who require language in order to be?

What kind of beings do we create with these words?  Ask yourself if it's so innocent. Take a moment, just a moment, to think about what you see in your head when the word "retard" comes out of your mouth? Is this the box in which you wish to use to shape my daughter or any other child with a cognitive disability? It's that simple. Let your speech reflect the world in which you wish to live. 

This is a blog hop:

Monday, March 04, 2013

Schooling Jude

Watching Jude play with her sisters is miraculous to me. Maybe it's because I thought this would be hard for her. I wasn't sure what her capabilities would be. It seems silly but after reading about low muscle tone, exhaustion from heart problems (all very real problems) I wasn't sure she'd be able to kick her sister. Much to our joy, she is pretty awesome at playing. 

Watching her interact with Piper or R during floor times, does have my mind wandering in directions I had not imagine. Lately, I've been reading some blogs about parents who don't go overboard with therapies. They have many good reasons but the one that resonates with me is the case for unschooling. Of course.

Honestly it's a problem I had been mulling over ever since we found out about Jude. I know, I know schooling is a long ways off but I can't help but ponder the implications of various schooling options. And in some ways it's not that far off. Jude is eligible for early head start at three. I've read and heard varying voices from people who home school their other kids to those who do a pretty rigid school at home for their child with Down syndrome. Neither option feels really comfortable to me. And I wonder what I'm scared of. Because clearly I am scared if I am thinking of sending Jude to school...while I home school the other kids.

I am thinking about these things as well because we are about to have Babies Can't Wait come to do therapy with Jude. They're really not sure what to do with her as she's developmentally on track for now. Part of me wonders if she should can it until she's not. But then I worry....wonder if by saying "Why don't we wait" I end up setting her back? Maybe she's going to lose out somehow if I don't push for everything. Now. 

This worry, this fear, what I'm scared of: that Jude will be left behind. That she'll never learn to walk or talk. This is what scares me. Wonder if she could read but because I suck at teaching reading (and trust me I do) she never learns? I find myself scared that the things that did come to my children through exposure and guiding as opposed to out right teaching will not come to Jude. I'm not sure yet where unschooling comes into a play with a child who has an intellectual disability. (argh I HATE that term). I don't even KNOW at this point if her cognitive ability will be mild or severe.

What I do know is that I don't have any desire for Jude to be the same as other kids. I don't want this for my other child why would I want this for her? I want her to have the best life possible for her not the best life possible as imagined by me or any one else. I am proud of what unschooling as done for my children. They are confident, curious and adventuresome. I have to admit that I worry Jude will lose these qualities if we push too hard.

Luckily I have a few years to ponder these things and learn more. There has to be others out there who are unschooling their kids with Down syndrome. Therapy right now is just play, and the therapists here are awesome so I figure some extra play time is always good. I hope that we find our balance as this journey winds on.

But for now I'll bask in the joy Jude finds in kicking her sister. 

Saturday, March 02, 2013

Love Stories

Tonight Piper and I finished Sarah Plain and Tall which is one of my favorite children's books. I found I still tear up at the end when Sarah decides to stay. And as always I find myself moved at how a family falls in love. It's a lovely reminder that love was not always the way we have it now. And it also makes me realize how much of H and mine love story is also the love story of a family. 

Today was a simple day. We linger over a pancake breakfast, bantering. We went to a coffee shop where the son bathed us in the warm sunlight. It was the kind of day that was typical for us but also the kind of day that makes me fall in love all over again. Funnily it wasn't a perfect day. R had a few tantrums at the coffee shop. Camille was sassy and rude. Umberto ignored us. Piper whined. Soda was spilled. Someone shredded the leaves from a potted tree. We were loud and got dirty looks from busy studious college students. But there was also laughing, shared jokes, (meggings..who knew?!). There were books read. Babies nursed and cuddled. Sweet brownies and creamy coffee. Love is messy after all. And so sweet.

Tonight, after getting rid of a killer headache, I snuggled against H who was holding sweet Jude. Wrapped in his arm, warm, I finished reading Sarah Plain and Tall. This is one of my favorite children's books, and I was really excited when Piper asked me to pick a book for her. I hadn't read this one in many years but I had fond memories of it when my mom used it in her second grade classroom. As I read about Papa's letter to a paper out East looking for a bride, I had to stop and explain to Piper that this was a common practice. Of course marriage was pretty different I told her than what you have know. People didn't always just go out and fall in love. Marriage was seen differently I told her. It was more practical.

But as I read through the story, I realized that at least in this story I was wrong. Sarah Plain and Tall is  a sweet love story. It's the story of a family falling in love, and it's lovely. Maybe I hadn't noticed it before because I didn't have my own little family. Now that I am here, surrounded by my beasties, I realized that this family is rather like a romance. Each day, I fall in love through all of it. The shit (literally and figuratively). The joy. The tears. 

Jude is a testament to this love and how it always ongoing. When we told the kids about Jude, they took it in stride. Camille got out books on Down syndrome and started to learn. Jude is now often found snoozing in Umberto's arms. Piper and R are her greatest source of entertainment. To the kids she is just another beastie to fall in love with, and indeed they are falling in love as are we. The romance continues for all of us. 

On Inspirational Videos and Memes

I have an uneasy relationship with the videos and memes that get passed around the Internet, the ones that are often posted on my Facebook page. You know the ones I'm talking about: basketball player on opposing team passes the ball to a disabled player. Or the ones where a student council decides to ensure that a couple with Down syndrome become Prom King and Queen. These seem like such touching moments. Filled with compassion. Kindness. Why the hate? Well, I wonder sometimes if these actions are also twinged with pity, and while I want people to feel compassion for Jude, I don't want them to pity her. There is nothing, after all, to pity. And I also find myself challenging our notions of success and winning. Of being popular. What I've realized is that I want all my kids to be treated the same, as humans with dignity and respect. But I've also come to realize that what this means for us is likely very different than what it means for other families.

H and I are committed revolutionaries in many senses. We joke that we had so many kids because we wanted to produce future leaders of the coming revolution. For us, our entire lives are about challenging the status quo. We are skeptical of cultural motivations, and we challenge the ideas that shape our society. It is why we home school. It's how we raise our children. Thus it's not surprising that we really don't want Jude to be a prom queen or to be super into sports. We don't really want that for any of our kids.

For a bit of time, I did start to want those things for Jude. Why? Because I saw her as different. I imagined that her life couldn't be like ours. That I had to do Special Olympics, and that we should want her to be a prom queen due to some nice kids at her local high school. But as Jude establishes herself into our lives, I've come to see how awful this view was. The assumption that Jude would be different reveals my own unknown bias towards people with disabilities. It would be like me assuming that the other beasties couldn't be a part of my life because they're Hispanic. It's just wrong, and now I see that we can't do anything but raise Jude as we are raising the other kids. I'm not sure what this will look like but it won't involve pity.

Which brings me back to these videos and memes. I don't want to totally disparage them because I understand they are sent to me with love. It's my wonderful community saying "We love Jude." But I also find them disturbing because I think in some ways they are false ways of introducing a child with disabilities into a community. They seem like posed set ups even if they are done with the best intentions. If they were done with a sense of challenging the values of our society, I could get behind them more. But I don't think that is the motivation. Ultimately these actions are just moments in time. They don't seem to be lasting ways of finding real and valuable roles for children/people with disabilities. They don't suggest provocatively new ways to look at winning and losing.

This is by no means to suggest that people who do these things are unkind. I have no doubt that they have the best intentions. But I can't help but be reminded of the early actions of white people towards people of color. The kind gestures that masked unseen prejudice. Or the ways a teacher might encourage a working class student to not take an AP class out of kindness (after all what is the chance that such a child would go to college?). Often the tokens we hand out to those different than us are ways of keeping people firmly in their place. Intentions are not always the way to equality, and in these moments where we hand someone a ball out of pity, we are depriving them of a full human experience.

One of my favorite blogs write about the video, using some of my ideas as well as proving a link to another provocative opinion here.

Friday, March 01, 2013

What We Do All Day

Every year, I plan a whole curriculum of things we are going to do. I buy workbooks, textbooks, and determine that we are finally going to buckle down and DO SCHOOL. And this works for about a month but then life happens or we burn out, and this plan ends up abandon. I'm not sure when it will sink in that we really are unschoolers. I chafe against the term, I suppose, as I often chafe about getting lumped into a category. I resist the definition not just because I don't like others defining my family but also because I hate having to defend why I can lay claim to the term. We are not radical after all. I still make my kids do math and history but we've at least discussed why I do that. And I do make them come up with plans, and while I'm pretty lenient about screen time, I do make them get off once in awhile. I know that for a lot of people that lands me, solidly, out side of the unschooling world. But for those who do school at home, I'm also a dismal failure. Kind of like all aspects of my life, I sloppily spill out of the categories.

Yesterday, I answered an email for someone who wants to come observe what Piper does all day. She's one of Piper's teachers at the unschool so not a stranger. She wants to see how Piper uses the community for learning which of course has me thinking about how we use the community and what we do. On an obvious level we use the library (of course our favorite place) and we use the catholic center. But I realized that a lot of our learning in the community was very casual. It involves coffee shops:
And because we're a nosy curious family we get invited behind the scenes. Piper got to learn all about coffee roasting at Jittery Joe's because H was peering through the door to watch. 

We get to look at art exhibits that we find in unexpected places: 

And sometimes the art is not even part of the exhibit...just some writing on the wall:

While we're wandering around looking for art, we might find a tree growing inside a patio:

And we can try to figure out why they left it and what will happen as it continues to grow.

When we go to pick strawberries, we get to pet goats and check out chickens which with this group of kids will lead to library trips and Internet searches.

Our an afternoon walk, we often stumble into more art shows that are free! And fun! And we bump into friends who like to create art where ever they are too. So the floor at an exhibit becomes an easel.

As we explore the campus, we often discover secret awesome spots where there are Koi

and turtles that H is surprisingly good at catching.

I realized it will be hard to show this teacher the whole of what we do in any given week. It's not easy to document finding an ant hill or a bug hotel on  walk. Or how we find art in these odd spots. The way that people invite us into what they do. 

But I also realized as I thought about this visit, and what we'd show the teacher that I need to let go of my traditional leanings and embrace the unschoolers that we are. We might still do math workbooks or I like doing history with my kids (hey I'm learning too and it's cool) but that really just as much important stuff is happening when we get out there and explore. When we open ourselves up to what others have to offer. And sometimes by just living. Out there. In the world.