a new poem:

the text:

i have lived this life licking
the caps of knuckles, watching
from corners perched,
ready to swoop into hiding

i have lived this life begging myself to
become less a monster, less a creature to cry for.

when i did not change, when nothing about me
grew more agreeable,
i cried for myself – sulking.
mourning this body,
this life.

but here i am
listening to you talk of
crushes and dreams,
classes and parents, and
i am wondering how i could witness
this goodness, and
call us beast;
how i could know you and
know me, and
still subscribe to this doctrine of
our monstrosity.

link to video: http://vimeo.com/33386031

since early march, i have told friends that i have not “bounced back” yet. by “bounced back” i mean that this was not the first time i was in a relationship with someone who told me later on that they did not find my physical embodiment attractive. this is not my first time with someone who tried to make the attraction piece “work” because they appreciated my mind and spirit inside of this body, or the connection we had. in fact, this has been my whole life — a string of experiences where i am the friend people are secretly very emotionally intimate with, but the one who is not invited to parties, the friend the person is conflicted about loving, the date who knows the parents well, but not the person’s other friends. it has been an endless struggle to prove and remember worth in a culture that is relentless in its telling of the wrongness of our bodies. i have enough experience now that if i had known this is where she was, i would not have dated her. it’s fine not to like me or not want to date me, but an uncertainty of my body is non-negotiable.

my sadness is not so much loss for her — we barely knew each other. my heaviness is in being triggered to this place of undesirability. in this rampant culture of ableism, wanting myself is something i have fought for. coming back to this place has been very hard. feeling undesirable and angry at my body/reality was unexpected. i was loving my defiant, resilient body with such an intensity. it hasn’t just been being triggered by her that has been hard. i am starting to realize how hard it is to manage all the things a complex body like mine needs. i am learning to love a body that needs so much from me.

i still feel foolish. foolish for opening myself up like that, foolish for believing disabled girl her would know how to love disabled girl me. foolsih for thinking that intimacy was finding another young, queer, wheelchair using, asian girl with a white daddy, political person.

collecting myself has taken:
poetry
spending time with people with kin bodies, who love themselves
writing out on my iphone at 2 am all the ways i have survived (and wanted to stay alive)
saying no to friendships that i am not emotionally ready for
distance
distractions
love & being held in bed while antony and the johnsons play
talking to a therapist at a queer mental health center
affirmation from my community via snail-mail
coming to grips that this body and all the work it takes to live in it is always going to be my reality
learning how to have respect for my body even when i resent it
energy, so. much. energy.

some days i start to feel like the self i once knew, but so many things bring me back to this place. seeing a disability or queer analysis that has no recognition of what it means to live in a non-normative body is a trigger. seeing people i am in community with having non-wheelchair accessible event is a trigger. on a bad day, having a fight at home, a friend forgetting something important to me, or my sister not calling me back all take me to that place. i know it’s my own stuff. i know how i feel about myself has to come from inside.

and i can’t blame her for not loving me. it has always been my lone work.

though i am active in many communities, most of my time and energy goes towards the disability rights movement. this is largely because it raised me, i work for a disability rights organization and i love disabled people more than anything/anyone i’ve ever loved before.

but damn if the disability rights movement isn’t pissing me off now.

frustrations/issues:

1.) more than 14 queer youth have killed themselves in the last 6 weeks because the violence they experienced at the hands of others was too much to live with. though many of us have experienced almost this exact form of bullying, i haven’t heard a peep out of the disability community. no calls to queer organizations, no vigils, no brown bag lunches.

so — why are we so damn silent? why does the disability rights movement refuse to acknowledge that the root of our oppression is not a lack of a curbcut but a culture that polices and otherizes bodies that are framed as deviant? and when we do talk about bullying, why is the solution anti-bullying laws? is that the best you’ve got — to send youth to juvenile detention centers? what world do you live in if you think the prison industrial complex is a just institution that can be a king solomon to our issues?

i guess it wouldn’t be so easy to push a one-issue agenda if we had to talk about the fact that the bodies society considers deviant, dirty, or bad aren’t just disabled, but also are black, brown, poor, trans, female and living on the res.

2.) society for disability studies, a group of disability scholars, is now wanting to study disability justice, a movement and framework being developed by disabled people of color. this might be okay if the society was led by and predominately involved people of color.  but many black and brown folks explicitly say they do not feel safe in sds. many say it is racist. the academy studying people of color is not a new phenomenon.

it might also be okay to host a conference on disability justice if it actually was about disability justice. the cfp begins by quoting paul longmore, a white man. it then talks about the ADA and the UN Convention, both which are important but explictly fall under a rights framework. there is never any mention of the role of institutional violence in disabling communities of color, the myriad of ways people are resisting modern day eugenics, the myth of independence, community accountability/access, or the long list of work disability justice activists are doing.

it means something that white people are wanting to “explore” disability justice before disabled people of color have even reach consensus about it. i’m not trying to say sds, centers for independent living and others can’t do work on race/class/gender/queerness, just that they should start by doing a conference on white supremacy, heteronormativity/more. if you already have, do it again. and again. and again. just be careful about defining disability justice before we get to.

3.) my friend can’t get a job in this movement. we’ve gone through the same ranks. we’re both great at what we do. the difference is he’s black. and dark-skinned. and a man of color. he is on my mind all day, mostly in regards to the roles we are asked to play in this movement and how our roles are so invisibilized. when we go to an event, i am the asian woman doing the behind-the-scenes logistics/”women’s” work, he is the one making people feel welcome in a space, and the white people are the ones networking with the important guests. we sign up for these roles because it is what is expected (and because we are good – aka socialized- for them) but no one talks about the history of black minstrelsy and what that means for him to be the one making people comfortable. no one talks about how so many organizations are run by unseen women who are either underpaid or not paid at all.

and with all this, people still don’t believe things are connected together. but of course they’d don’t, then they’d have to acknowledge we aren’t all in community with each other. they’d have to acknowledge they were hurting as much as they were helping.

*WPS= white people shit.

dear ty,

it is not often that institutions allow disabled people to do things out of the routine, especially something as huge as traveling. somehow we made the right calls, had the right resources, filled out the right paperwork, and convinced the right people. now, in two weeks, you will be traveling to this meeting across the country. i know that you will bring so much to the space and gain a lot from this experience.

when you and i talk, i want to tell you all about my friend DK. i think about him admittedly because you both face a lot of the same issues as young black men with developmental disabilities entangled in the fostercare system. for DK, we were never able to find the right words and the right resources to make it so he could travel. no matter what plans we made to get him to events, his support system always fell through and the state wouldn’t let him travel alone. it got to the point where we had to stop trying to see if he could come with us because the build up and let down was too much.

when it started to seem like this trip wasn’t going to work out for you either, the sting of DK’s disappointment came back to me all over again. what it meant for him to be left behind. how it cut him. the way that his voice bled when he called us to stay in the loop. no one should ever experience that particular brand of isolation, but, we do every day. this is what it means to live in a world not designed for us: getting cut and bleeding, over and over again.

there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash. even now, it sounds silly but i find myself jealous of my baby sister because she can go to college and when she is done, start a life wherever she wants. for me, preparing for this move has taken years.

all of that is not meant as crip complaining, but more to share that i’ve been thinking a lot about privilege, mobility, ableism, support systems and what my move and your trip means.

i have a feeling that this is just the beginning for you, me, and hopefully one day DK too.

your nuna,
cripchick

i recently came home from a whirlwind 12 day trip to portland and san francisco.

my time in portland felt much like a “tour” in that it was not a conference or gathering, it was about seeing me (think “come see cripchick speak here!” x 5 times… and people actually showing up). i kind of fell in love with the gratification of facilitating successful workshops, breaking ableism down and having ppl get it, and getting the respect of people i respect. there was a time where i was looking around the room in portland and was surprised that i could say i hadn’t met one straight person all day — i was completely immersed in queer crip community. (sad thing is i could also say that i hadn’t met one person of color, portland is WHITE yall).

and then i went to san francisco, right?

it was even more mind-blowing. here i was in community with artists, poets, organizers. the sins crew. azolla story fam.

carved out a routine rooted in crip interdependence.
slept in late and started my mornings writing poems under the shade of a lemon tree.
spent the days engaged in conversations with queer crips of color.
stayed in the home of the most generous person i’ve ever met.
spontaneously met up with two queer koreans, only to hear that there were more of us.
explored an accessible city.
ate delicious food.
got deliriously lost in a crush.

no matter where i travel to, every trip home always begins with a deep sigh of recognition. i love the south. can’t imagine living anywhere else. at the same time, coming home was really hard this time. although this is where i belong, it is also the place where my reality is one rooted in military chain of command culture, heteronormativity/hypermasculinity, and the fact that there is not much room for non-black folks in people of color organizing (very much a black/white dichotomy). i kind of don’t know what to do with my sadness. the “right” answer seems to be to move (whether that is another town/city in the south, like durham or atlanta, or another region) but this… is my home.

a friend/fellow organizer once said that this is the question every southern queer faces: “stay in your home of origin or [if even possible,] move to a place where you have more resources?”

wish i had an answer.

A few hours after the Autistic Self Advocacy Network
wrote to the Autism Society of America York Chapter (ASA York) about a billboard that dangerously compared autism to a national kidnapping emergency and uses puzzle piece symbolism [not being a whole person], they received a response saying that the billboard would be taken down.

Excerpt of the letter ASAN sent to ASA-York:

As we, Autistic adults and youth ourselves, attempt to assert our voices in the national conversation about us, we find ourselves characterized by those who often speak on our behalf as burdens on society, as not fully present within our own bodies and as individuals devoid of the full measure of personhood and humanity. Such mischaracterization threatens our efforts to be included in our homes, our schools, our communities and our collective society. By making the autism message one of fear, stigma and hostage-taking rather than one of civil rights, inclusion and support for all, our desire to be recognized as full and equal citizens in our communities is hurt.

Picture of the billboard:

Reads: If 1 in 150 American were kidnapped, we'd have a national emergency. We do. Autism.

Last year it took 21 disability organizations campaigning together via blogs, mainstream media, and thousands of phone calls and letters to have similar billboards taken down. In a time where disabled people are the last to be seen as experts of their own lives and where the public understanding of autism is strongly shaped by those with eugenic “cure”- oriented perspective (e.g. Autism Speaks, Jenny McCarthy), let’s celebrate self-determination being recognized and autistic self advocates being heard!

The response to ASAN from ASA-York President Amy Wallace:

Dear Friends in the Autism Community,
Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.

Respectfully yours,

Amy Wallace

To email Amy and thank the ASA York chapter for taking the billboard down, email her at amywallace3@gmail.com

Big ups to ASAN and autistic independent media makers (Joe, Abfh, Nicocoer) who made this happen!