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.
Wednesday, October 30, 2013
Tuesday, October 22, 2013
Falling Inbetween
The other day, as I was rushing out the door to go pick up H, I grabbed Butler's "Giving an Account of Oneself." I thought I had yet to finish the book but when I opened it up, waiting for H to come from his office, I saw that I had underlined the last paragraph. I realized I had finished the book while very pregnant with Jude and thus in the midst of black hole brain that comes with pregnancy. I glanced over what I had underlined and was stunned into a kind of amazed silence. Everything that I had underlined, especially things with exclamation points, addressed the concerns I have been feeling over narratives, scripts, and stories. I loved how these ideas had been germinating for so long and now as I get closer to the year anniversary of finishing the book, I'm seeing the sprouts coming up.
When I look over the ways we tell stories about having children with Ds (or any disability really) there appear to be two narratives. One says "Life with a child with disability is horribly hard. It's a life filled with drudgery, and hardship. Life with this child even when you love them is beyond stressful. It pushes you,the parent, into awful acts." With this story comes a kind of strange admiration borne of pity. Mothers with "normal" children can look at your story and feel good about their own "typical" kids. They can think things like "Oh you are so strong" which leads people to think that only "special parents" can have "special kids" and they are not that special. Our children become seen as burdens while, we, the parents are portrayed as beyond heroic giving all our actions, no matter how cruel or senseless, a validation.
In the other narrative is the story of another kind of specialness. Your child is an angel. A miracle. God's love embodied in human form. This story says that our kids love better than other kid. They are sent to us to teach us how to be better humans. The extra chromosome endows them with super powers usually of love. This is the story that tells us that kids with Ds are "sweet but stubborn." The children in this story are always photo shopped beautiful. Perfect and angelic as they gaze out at the viewer. Passive. These are the children people exclaim over but that they don't see as quite human. These children do not grow into adults but are frozen in the world of a glossy 8 X 10.
When I found I was pregnant with a child that had Ds, I found these two stories. There were very few stories where parents were saying "Eh I got a kid." I remember after Jude was born I found the blog 21 + 21 + 21 = ? and fell in love with the header on her blog "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay." Here was a narrative that was fitting what I felt about Jude. That fit what was going on in my day to day life. I didn't want to be sad about Jude having Ds. I wanted our life to just keep being our life. A life filled with chaos and beasties. A life where we sometimes felt like yelling in frustration. A life that was often filled with joy but sometimes felt like drudgery because you know after washing the 100th dish of the day it's hard to muster up enthusiasm. Basically here was someone who was saying "This is just life." Down Wit Dat wrote about this as well...about the need for a narrative that showed just how normal life is for her family.
What I would suggest has happened for us is that we hit that horizon limit. We were faced with stories that did not reflect the "you" in our lives, and we had to write something new. We had to find others who were writing something new. There had to be another story because the "yous" we were seeing were not the "yous" in our lives.
I want Jude to find the humanness of herself in the story that I tell about her. When I limit her to a stereotype on either end of the spectrum, there is not a lot of space to be human. In the narratives above, she does not qualify as a human. She qualifies as a flat representation denied the complexity of life. Right now I am the bearer of Jude's narrative because she is a baby and she can't give an account of herself. As she grows, she will ask me to tell her stories as all my children have asked. I will tell her stories about her fits of anger and frustration after getting stuck under the couch again. I will tell her about how she began to sing to me at ten months, and how it slayed me utterly and totally. These stories will accumulate as she gets older, and some day her voice will join with mine in the telling until one day her voice only will stand. But what will remain, I hope is the sheer normalcy of her life. The simple fact that our life did not get harder when Jude entered it. It got better in the sense that all of our children added joy to our family but it was not a miracle sent from God either.
The simple fact is that Jude needs a story about acceptance and that is why I write about Ds. I realized the other day that while I understand why people use the word awareness, I find it insulting. What are we raising awareness about anyway? Do we really need to raise awareness about this third chromosome? Why should we? Jude is a human being and that is really all one needs to know. Her medical conditions or lack of them are not something that anyone besides I and her father need to know. We all have a list of potential health crisis due to genetic material and yet we don't advertise them to the world. I owe no one an explanation as to Jude's appearance. We assume a difference and we seek to narrate it. This what I see in most cases of awareness. It is not what I desire for Jude.
Instead I want acceptance. I want Jude to be seen as she is which is a human being. Acceptance means being able to give an account of oneself that recognizes a relationship with humans. Jude and all people with intellectual disabilities deserve a story that includes failures, successes, giving up, not giving up, being sad, being happy, great joy, great sorrow, and most importantly real relationships with the people around them. Relationships that allow them to be both a "you" and an "I."
And because I want this real acceptance--not a tolerance, not an awareness--I am willing to make a stand. It's easy to say the narratives that we tell our own. We lay claim to them. We say they are our accounting and that we have a right to share those stories. But here's the problem. Those stories also involve a "you" and if that you is being denied a chance at humanity is it ethical to share your story? Is it ethical to continue the narrative that dehumanizes? I have said it before and will say it again "Yes you have a right to your own emotions but you don't not have a right to let your emotions spill into the way another person is painted to the entire world." In our world of tell all memoirs we are reaching the peak of what it means to share, to own our experiences and our emotions. We throw out to the glare of the world everything. And sometimes we forget that there is more than just us in these stories. Giving an account of oneself must always include the others with whom we create. So while I may not be able to tell you what to write, I can critique your story. I can challenge it. I can tell another story. If that makes me divisive so be it. For my daughters' sake, for my son' sake, for the sake of those with disabilities of all kinds, I will remember that when I given an account of myself I will always remember that my "I" was not shaped in isolation.
"When we come up against the limits of any epistemological horizon and realize that the question is not simply whether I can or will know you, or whether I can be known, we are compelled to realize as well that 'you' qualify in the scheme of the human within which I operate, and that no 'I' can begin to tell its story without asking: 'Who are you?' 'Who speaks to me?' 'To whom do I speak when I speak to you?'" Butler 134
When I look over the ways we tell stories about having children with Ds (or any disability really) there appear to be two narratives. One says "Life with a child with disability is horribly hard. It's a life filled with drudgery, and hardship. Life with this child even when you love them is beyond stressful. It pushes you,the parent, into awful acts." With this story comes a kind of strange admiration borne of pity. Mothers with "normal" children can look at your story and feel good about their own "typical" kids. They can think things like "Oh you are so strong" which leads people to think that only "special parents" can have "special kids" and they are not that special. Our children become seen as burdens while, we, the parents are portrayed as beyond heroic giving all our actions, no matter how cruel or senseless, a validation.
In the other narrative is the story of another kind of specialness. Your child is an angel. A miracle. God's love embodied in human form. This story says that our kids love better than other kid. They are sent to us to teach us how to be better humans. The extra chromosome endows them with super powers usually of love. This is the story that tells us that kids with Ds are "sweet but stubborn." The children in this story are always photo shopped beautiful. Perfect and angelic as they gaze out at the viewer. Passive. These are the children people exclaim over but that they don't see as quite human. These children do not grow into adults but are frozen in the world of a glossy 8 X 10.
When I found I was pregnant with a child that had Ds, I found these two stories. There were very few stories where parents were saying "Eh I got a kid." I remember after Jude was born I found the blog 21 + 21 + 21 = ? and fell in love with the header on her blog "We're not sad and life isn't hard. There's a lot of love and that's the way it's going to stay." Here was a narrative that was fitting what I felt about Jude. That fit what was going on in my day to day life. I didn't want to be sad about Jude having Ds. I wanted our life to just keep being our life. A life filled with chaos and beasties. A life where we sometimes felt like yelling in frustration. A life that was often filled with joy but sometimes felt like drudgery because you know after washing the 100th dish of the day it's hard to muster up enthusiasm. Basically here was someone who was saying "This is just life." Down Wit Dat wrote about this as well...about the need for a narrative that showed just how normal life is for her family.
What I would suggest has happened for us is that we hit that horizon limit. We were faced with stories that did not reflect the "you" in our lives, and we had to write something new. We had to find others who were writing something new. There had to be another story because the "yous" we were seeing were not the "yous" in our lives.
I want Jude to find the humanness of herself in the story that I tell about her. When I limit her to a stereotype on either end of the spectrum, there is not a lot of space to be human. In the narratives above, she does not qualify as a human. She qualifies as a flat representation denied the complexity of life. Right now I am the bearer of Jude's narrative because she is a baby and she can't give an account of herself. As she grows, she will ask me to tell her stories as all my children have asked. I will tell her stories about her fits of anger and frustration after getting stuck under the couch again. I will tell her about how she began to sing to me at ten months, and how it slayed me utterly and totally. These stories will accumulate as she gets older, and some day her voice will join with mine in the telling until one day her voice only will stand. But what will remain, I hope is the sheer normalcy of her life. The simple fact that our life did not get harder when Jude entered it. It got better in the sense that all of our children added joy to our family but it was not a miracle sent from God either.
The simple fact is that Jude needs a story about acceptance and that is why I write about Ds. I realized the other day that while I understand why people use the word awareness, I find it insulting. What are we raising awareness about anyway? Do we really need to raise awareness about this third chromosome? Why should we? Jude is a human being and that is really all one needs to know. Her medical conditions or lack of them are not something that anyone besides I and her father need to know. We all have a list of potential health crisis due to genetic material and yet we don't advertise them to the world. I owe no one an explanation as to Jude's appearance. We assume a difference and we seek to narrate it. This what I see in most cases of awareness. It is not what I desire for Jude.
Instead I want acceptance. I want Jude to be seen as she is which is a human being. Acceptance means being able to give an account of oneself that recognizes a relationship with humans. Jude and all people with intellectual disabilities deserve a story that includes failures, successes, giving up, not giving up, being sad, being happy, great joy, great sorrow, and most importantly real relationships with the people around them. Relationships that allow them to be both a "you" and an "I."
And because I want this real acceptance--not a tolerance, not an awareness--I am willing to make a stand. It's easy to say the narratives that we tell our own. We lay claim to them. We say they are our accounting and that we have a right to share those stories. But here's the problem. Those stories also involve a "you" and if that you is being denied a chance at humanity is it ethical to share your story? Is it ethical to continue the narrative that dehumanizes? I have said it before and will say it again "Yes you have a right to your own emotions but you don't not have a right to let your emotions spill into the way another person is painted to the entire world." In our world of tell all memoirs we are reaching the peak of what it means to share, to own our experiences and our emotions. We throw out to the glare of the world everything. And sometimes we forget that there is more than just us in these stories. Giving an account of oneself must always include the others with whom we create. So while I may not be able to tell you what to write, I can critique your story. I can challenge it. I can tell another story. If that makes me divisive so be it. For my daughters' sake, for my son' sake, for the sake of those with disabilities of all kinds, I will remember that when I given an account of myself I will always remember that my "I" was not shaped in isolation.
Perhaps most importantly, we must recognize that ethics requires us to risk ourselves precisely at those moments of unkowningness, when what forms us diverges from what lies before us, when our willingness to become undone in relation to others constitutes our chance of becoming human. To be undone by another is a primary necessity, an anguish, to be sure, but also a chance--to be addressed, claimed, bound to what is not me, but also to be moved, to be prompted to act, to address myself elsewhere, and so to vacate the self-sufficient 'I' as a kind of possession. If we speak and try to given an account from this place, we will not be irresponsible, or, if we are, we will surely be forgiven." Judith Butler Giving An Account of Oneself 136
Monday, October 21, 2013
Who We Are
This is a rehash of a post I wrote in March. I'm reposting in support of Down Wit Dat's Blog Hop for 3/21.
Thursday is World Down syndrome Day, and I've noticed a run of blogs with the theme "I am..." I assume there is some kind of secret I've not been let in on. This morning I was trying to decide if I was going to jump on the train. Then I read this while drinking my morning coffee. She's right. Awareness isn't enough.
It's like, I thought, asking people to be aware that there are, you know, Hispanic people out there. Blink.
H was in New York in the early part of this month, leaving me home with the younger beasties. H has always been super positive about Jude and DS. When he wasn't around it was easy for me to get really morose and hung up on it. I had a series of what I call DS days when I had a hard time not seeing in Jude's features all the physical markers. And I'm ashamed to say I kind of got obsessed.
I felt like people were looking at oddly, trying to guess if she had Down syndrome or not. I am open to that being paranoia but I am used to people looking at my kids in questioning ways. People have asked me outright if they were adopted. Some would do the subtle "Wow your kids are so dark." Which is shorthand for what race are your children? I usually just ignore them because really it's no one's business. But with Jude I find myself blurting out to total strangers that she has Down syndrome.
Blink.
Why do I not blurt out that Rowena's father is Mexican.
These posts brought to you by:
Thursday is World Down syndrome Day, and I've noticed a run of blogs with the theme "I am..." I assume there is some kind of secret I've not been let in on. This morning I was trying to decide if I was going to jump on the train. Then I read this while drinking my morning coffee. She's right. Awareness isn't enough.
It's like, I thought, asking people to be aware that there are, you know, Hispanic people out there. Blink.
H was in New York in the early part of this month, leaving me home with the younger beasties. H has always been super positive about Jude and DS. When he wasn't around it was easy for me to get really morose and hung up on it. I had a series of what I call DS days when I had a hard time not seeing in Jude's features all the physical markers. And I'm ashamed to say I kind of got obsessed.
I felt like people were looking at oddly, trying to guess if she had Down syndrome or not. I am open to that being paranoia but I am used to people looking at my kids in questioning ways. People have asked me outright if they were adopted. Some would do the subtle "Wow your kids are so dark." Which is shorthand for what race are your children? I usually just ignore them because really it's no one's business. But with Jude I find myself blurting out to total strangers that she has Down syndrome.
Blink.
Why do I not blurt out that Rowena's father is Mexican.
Or that Umberto is a boy?
I never spent hours getting hung up on my kids darker skin, their chocolate eyes or dark hair. I was never concerned that people would guess they were Hispanic. Aka I was proud. It was not something that I felt had to be hidden. And I realized that when I blurted out that Jude had Down syndrome, it was with a sense that I was revealing something not so good. Then I was pissed off at my self...because I don't want to feel that way about Jude or about anyone with Down syndrome. It was a painful but important moment for me.
You see Jude is not just someone who has an intellectual disability. She is also Hispanic and female. She is a sister. A future lover. She is more importantly human and as such deserves to be seen with pride. Pride. Not awareness. And this is important because I have felt compelled since having my children to install in them a sense of pride in who they are as people...in all that complexity. They live in a world that loves labels. They are racialized, gendered, intellectualized. There are so many boxes to check.
The Hispanic community is one that is often invisible to many people especially the community of undocumented workers. But lately they have been brought to light...as a demonized other that is responsible for the economic down turn. They have become a convenient target for the fear of a society being eaten alive by capitalism. But you know, the community is not promoting awareness. They are not putting up cute memes of their loveliest members. Instead they are fighting.
And through their cry for justice they are also making people aware. You know these kids right? They're the dreamers. The kids who were brought over when they were young by parents desperate for a new life. Maybe even a better life. These are the kids who GA doesn't want to let into college. And they're not putting sweet memes up. They're fighting. And I am proud to stand by them in their fight.
What I'm realizing is that there is another fight out there, and that it's a fight that needs more coverage. A fight for another group of people that is too often ignored. People with intellectual disabilities are often denied real health care. They are brutalized by the police. Sometimes they are even murdered. People with intellectual disabilities are at a greater risk for sexual abuse. They live in greater poverty than the general population. Luckily there are people out there fighting. Check out Down syndrome Uprising and join the revolution. Because you know I am proud to be a part of this movement as well.
This is who I am. And this is who I hope Jude becomes. Like all my children I hope to raise a beastie who fights the power.
Wednesday, October 02, 2013
The Space Between
When the Dr. called to tell me that my fetus had Trisomy 21, I remember the moment quite clearly. In that moment, before I cried or raged, I felt nothing. Not a numb kind of nothing. The kind of nothing that comes between breaths. A crystallized feeling where you simply do not know at any level what will come next. A moment where you have no idea what to even image. I have never ever felt this way in my life. I always knew where to place my foot so to speak. But in that moment, there was no script, no map, no path. I felt that my foot was hovering over an abyss of unknowing. It was not a negative space or a positive space. It was a nothing space. The space in between.
You see there was no script for this moment. Bourdieu would say that my doxa did not include this scenario. Butler would say that I was facing that misstep between the construct and the experience. I simply remember that I hardly dared to breath. That my skin felt inside out. That I was walking wrapped in cotton balls. That my words would shatter against the air. That touch would burn.
When I look back at the posts I wrote about that time, I realized that I was constructing as I went along. Trying very hard to find the words that would build some feeling about what it meant to be carrying a fetus with Trisomy 21. To bear that fetus as a baby into the world. To raise a child with Trisomy 21. I didn't know. I knew one story, and I had rejected it before Jude was even an imagining.
Because I had company in those early days it was very hard for me to construct a story. My mom had started to read "Expecting Adam" but I wasn't ready for much. I tentatively did some Internet searches. I read one or two stories but I couldn't fit into them. They were too big or too small. So I existed in the space between. I relished my friends saying "It's okay. It's good." Early on I did not hear that Jude was a special blessing, or any apologies for something that did not need to be apologized for. I knew those things would come because of the stories I had read. But for some reason, on that first day, they were not said.
Eventually I started to read, and I tried to fit on the stories. I told H that I was grieving the child I thought I was having, and he scoffed "What the hell does that mean? How is Jude NOT the child you were supposed to have?" I pretended that Jude was a miracle sent from God. I was being tested. God was giving me something that would be hard and beautiful. I did not need H to challenge that story. I could barely stomach it in my own head. I was so desperate to find a story that would fit. I was having a hard time writing my story because it was unknown to me. So foreign that it defied telling, one could say.
You see I didn't KNOW anyone with an intellectual disability much less someone with Down syndrome. I had never really imagined myself with a child who had Down syndrome. I had not prepared for this script. Strangely enough I knew how to feel if this child had been dead. I had gone to that dark place, and I knew what one should feel in that circumstance. But this one? I was lost, fumbling for meaning, for words, for language. All because I didn't have the encounters to know. To make human something that at this point was only an abstraction. A set of marks on a piece of white paper. There was no baby to make sense of what I was being told. Only a rather fuzzy ultrasound picture.
Before we moved to Athens, I wrote a thesis on how humans use stories, memoirs, to make meaning of their past in ways that reconcile that past to the present, to the future. I had chosen an odd memoir called Keep Sweet that defied many of the conventions of the way deconversion memoirs are framed. Debbie Palmer, a former member of the Fundamentalist Church of Jesus Christ of Latter Day Saints, seemed to be fumbling. She was in a place where, I argued, where she could see those gaps between what we know and what we come to find out. For the first time, I truly understood that moment. She was in the space between, and she was struggling to fit a script into this experience. She was grasping to make something of this nothing. It is like sculpting with sand and it does make for a pat kind of story.
Now that I am a bit further into this journey, with a baby sleeping on my lap, in a world where I think about Down syndrome every day but not about Jude having Down syndrome everyday, I realize that my experience is vital for a couple of reasons. Reasons that have often made me feel like I am a bit on the outside of a broader community. Because here's the thing, if people with Ds, and ID were really included then there would be a script. I'm talking about an inclusion that recognizes the humanness of all people. An inclusion where we would encounter a person with Ds on our daily walk, in the store, on the bus, in our class room. A world where we would engage and interact and develop relationships. If I, in my 41 years can only recall meeting and talking to someone with Down syndrome twice in my life then it does speak to how much further we have to go. And it's not just meeting people with Ds in the flesh, it's the fact that I don't read about people with Ds in academic papers. That I don't see their ideas in the boarder media. I don't see their art being talked about in art circles. When I read or hear about people with Ds, it is only in isolated places where I go only because Jude had Ds.
If the social world comes to reflect that the world is filled with difference, difference in abilities, colors, genders, etc than we have a richer script from which to draw. If we see kids with Ds on our TVs (yes, I know Glee but I'm talking about more than one show), if we see them not just as special additions but as fully included in the experience of life, we offer more. We side step the need for grief because having Ds could be just another variation in the vastness of experience. We need more scripts, more ways to understand that moment in between. Our stories are going to shape how another woman, like me, experiences that in between. I'd like to take her out of that space faster, so fast that it seems...well, typical.
You see there was no script for this moment. Bourdieu would say that my doxa did not include this scenario. Butler would say that I was facing that misstep between the construct and the experience. I simply remember that I hardly dared to breath. That my skin felt inside out. That I was walking wrapped in cotton balls. That my words would shatter against the air. That touch would burn.
When I look back at the posts I wrote about that time, I realized that I was constructing as I went along. Trying very hard to find the words that would build some feeling about what it meant to be carrying a fetus with Trisomy 21. To bear that fetus as a baby into the world. To raise a child with Trisomy 21. I didn't know. I knew one story, and I had rejected it before Jude was even an imagining.
Because I had company in those early days it was very hard for me to construct a story. My mom had started to read "Expecting Adam" but I wasn't ready for much. I tentatively did some Internet searches. I read one or two stories but I couldn't fit into them. They were too big or too small. So I existed in the space between. I relished my friends saying "It's okay. It's good." Early on I did not hear that Jude was a special blessing, or any apologies for something that did not need to be apologized for. I knew those things would come because of the stories I had read. But for some reason, on that first day, they were not said.
Eventually I started to read, and I tried to fit on the stories. I told H that I was grieving the child I thought I was having, and he scoffed "What the hell does that mean? How is Jude NOT the child you were supposed to have?" I pretended that Jude was a miracle sent from God. I was being tested. God was giving me something that would be hard and beautiful. I did not need H to challenge that story. I could barely stomach it in my own head. I was so desperate to find a story that would fit. I was having a hard time writing my story because it was unknown to me. So foreign that it defied telling, one could say.
You see I didn't KNOW anyone with an intellectual disability much less someone with Down syndrome. I had never really imagined myself with a child who had Down syndrome. I had not prepared for this script. Strangely enough I knew how to feel if this child had been dead. I had gone to that dark place, and I knew what one should feel in that circumstance. But this one? I was lost, fumbling for meaning, for words, for language. All because I didn't have the encounters to know. To make human something that at this point was only an abstraction. A set of marks on a piece of white paper. There was no baby to make sense of what I was being told. Only a rather fuzzy ultrasound picture.
Before we moved to Athens, I wrote a thesis on how humans use stories, memoirs, to make meaning of their past in ways that reconcile that past to the present, to the future. I had chosen an odd memoir called Keep Sweet that defied many of the conventions of the way deconversion memoirs are framed. Debbie Palmer, a former member of the Fundamentalist Church of Jesus Christ of Latter Day Saints, seemed to be fumbling. She was in a place where, I argued, where she could see those gaps between what we know and what we come to find out. For the first time, I truly understood that moment. She was in the space between, and she was struggling to fit a script into this experience. She was grasping to make something of this nothing. It is like sculpting with sand and it does make for a pat kind of story.
Now that I am a bit further into this journey, with a baby sleeping on my lap, in a world where I think about Down syndrome every day but not about Jude having Down syndrome everyday, I realize that my experience is vital for a couple of reasons. Reasons that have often made me feel like I am a bit on the outside of a broader community. Because here's the thing, if people with Ds, and ID were really included then there would be a script. I'm talking about an inclusion that recognizes the humanness of all people. An inclusion where we would encounter a person with Ds on our daily walk, in the store, on the bus, in our class room. A world where we would engage and interact and develop relationships. If I, in my 41 years can only recall meeting and talking to someone with Down syndrome twice in my life then it does speak to how much further we have to go. And it's not just meeting people with Ds in the flesh, it's the fact that I don't read about people with Ds in academic papers. That I don't see their ideas in the boarder media. I don't see their art being talked about in art circles. When I read or hear about people with Ds, it is only in isolated places where I go only because Jude had Ds.
If the social world comes to reflect that the world is filled with difference, difference in abilities, colors, genders, etc than we have a richer script from which to draw. If we see kids with Ds on our TVs (yes, I know Glee but I'm talking about more than one show), if we see them not just as special additions but as fully included in the experience of life, we offer more. We side step the need for grief because having Ds could be just another variation in the vastness of experience. We need more scripts, more ways to understand that moment in between. Our stories are going to shape how another woman, like me, experiences that in between. I'd like to take her out of that space faster, so fast that it seems...well, typical.
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