cripchick's blog

growing up mixed always made me the person who swam between worlds, taking artifacts from each to prove the other existed, negotiating misunderstandings and building relationships that by their nature created coalition among very different people.

activists friends and i talk a lot about balance and energy. about how to work the system and how to do what we love (organize, create) but come to think about it, no, not everyone faces that problem. people who grow up as translators and bridge builders—folks who live in multiple communities, folks who had some privilege and were favored in some way by the system, mixed folks— are the ones who travel back and forth never knowing where they fit, what safe space looks like, when to switch up tongues. people say that both the reformist and the radical has to exist but no one feels the obligation to be both, to carry everything, like we do.

our communities fought so hard to be at the table, how could we not respect that & politely say no thank you to sitting there?…honestly our communities that we are working with don’t have the privilege for us to disengage, they need the resources, the funding, the connections that come w/ sitting at the table. (especially with disability and the daily things we need being so tied up in government). …we could spend a month with all our energy going to trying to fund something ourselves or we could use the dominant culture language skills we have to spend a day writing a grant application. …or these folks aren’t members of our communities but could be amazing allies if we put some time into it.

it is selfish not to work the system for your community, to get the money, when you have the skills to do so, right? but at the same time, sitting at the table, constantly working the system from the inside is tiring. representing your community at some board meeting may be a part of the work but it is nothing like doing what you love or being in home community. i feel most free when being me is a fundamental part of my organizing/creating. spaces where poetry, hip hop/pop culture, & our experiences leads to deep conversations and analysis building. where what i wear and what i listen to is seen as part of the media i make. where i am working with folks who “get it” with blood– blood stolen, blood flowing through their veins— not their pretty heads. people who organize out of necessity not because of a cause, charity, or to have something sparkly on their resume. that’s when i feel most at use or accomplished— when we are building with each other to find words & build movements that speak to being us. when we are doing and being us.

everything ultimately comes down to the question of where to put energy: balance of doing what you need to do to work the system or doing what you love & what makes you free. but maybe that is just the saga of a mixed girl…

—
artifact is another word for an object made by a person.

reform and radical are words used to describe how people see social change. reformists work to get society to recognize their community by doing things like getting in political office, writing for a big newspaper, etc. radicals believe the system will never help their communities and work to answer their own problems.

“sitting at the table” is phrase used to talk about being a part of a decision being made. people work hard to get their communities a “seat at the table”, which means being represented or recognized.

told my dad the other night that being a collective felt like it was fighting human nature. when he started on his whole speech about the failures of socialism,  i started this list.

why disabled youth organizing is hard as hell (aka whose bright idea was this??):

• all of us are fighting for self-determination in our own lives
• all of us are coming from some place of isolation and alienation, abuse and trauma. we are all still learning how to talk about those experiences and trust each other.
• many of us don’t have basic tools for organizing (phone, internet, transportation, personal income, supportive family structures)
• many of us live in rural areas and lack access to community
• many of us are in survival-mode & are navigating fostercare, psychatric institutions, nursing homes, group homes, juvie
• all of us are told we are consumers, not leaders
• all of us are unlearning everything we’ve been taught
• all of us are learning about our own disabilities and each others
• hard to figure out who our allies are. in nonprofit industrial complex, when we make a decision that isn’t popular with allies (like using the word “disabled” as a political word of power in our name), we don’t just lose support, ageist and ableist tactics are used to try and take our power
• this is honestly first time a lot of us have been asked: what do you want? what do you see for yourself & yr community?

why radical disabled youth organizing is so beautiful:

• we live interdependence. there aren’t any feelings of one-way dependency or charity because everyone is helping each other out & knowing we need each other.
• disability + youth + non-hierarchical collective power structure = radical spin on inclusion, access, and self determination
• we know how to do a lot with a little. (e.g. feed 12 people for 3 days on $100, sleep 3 in a bed…  i want to see rachel ray top that shit.)
• we are often experiencing things for the first time with each other. travelling, being independent, crushes, love…
• we are creative as hell. (can’t wait for you to see our disability history zine, self-advocacy rap, and no pity comedy puppet show that we are using in schools this month)
• there isn’t any model for what we are doing so we get to pave the way and dream up whatever we want
• we have some amazing elders and allies who support us
• we are shattering every preconception known

writing this list for the hard times, like this week. can’t help but fall in love w/ them all over again.

a friend and i have been having conversations about how hard we have been finding organizing to be lately. like, make-you-hate-yourself hard. energy-sucking hard. questioning-your-every-ability hard. i am happy to learn that september was the month mercury was in retrograde, that maybe it was the universe or something that we could not control that made us all treat each other like that.

that friend and i have been talking about what working in a community where everyone is coming from an extreme place of vulnerability looks like. like if vulnerability is a spectrum, it’s no joke, so many of us in core leadership roles are way down on one end of it. with parents, family members or best friends that we can’t tell we’re queer to. caught and trapped in systems. homeless. brushed aside. left behind. dealing with abuse/ being in abusive situations. creepin’. stuck. disability, the silence around it, the lack of people who actually get us, can be so isolating.  we come to this space where we have access and get to be ourselves — at least for a weekend here, a weekend there—and damn if we aren’t scared as hell to lose it. damn if we don’t whip out all the survival weapons we have hiding under our clothes. damn if we don’t secretly keep our finger on the trigger ready to shoot, not even knowing that’s what we are doing, not even knowing that we are working from a place of insecurity. vulnerability.

or at least it’s like that for me. i am left thinking of all the ways our actions are motivated by insecurity. fear of loneliness. loss of community.  maybe i keep waking up and finding myself in these relationships and friendships that aren’t working because i am scared of being so so so alone. that i can’t take any more isolation or longing. maybe the reason you are so angry with me is because you don’t trust me not to leave you, not to spit on everything you have poured into this friendship.  when i do something small, it ruffles up all these feelings, hits our histories— that gut feeling in you—and soon we all look like the enemy you have been taught to shoot at.

know that we have to be more gentle. more intentional. more aware. just am not sure yet how to put that into practice.

any ideas?

With Autism Speaks founder Bob Wright also serving as NBC’s CEO having served as NBC leadership (CEO) for more than 20 years, Autism Speaks has a lot of mainstream media influence. Many people rock puzzle piece gear without realizing that Autism Speaks is an organization that denies the voice of autistic people (they do not have a single autistic person on its board of directors or leadership), uses scare tactics to make the autism narrative one to be pitied and hated (see latest PSA below), and supports an eugenic cure-based agenda that focuses on eradicating autism (instead of viewing autism and nuerodiversity as a natural part of human diversity).

(Transcript available here)

By saying things like “I [autism] will plot to rob you of your children and your dreams” and “and if you are happily married, I will make sure that your marriage fails”, Autism Speaks’ latest PSA, “I Am Autism” is unacceptable. The autistic self advocate community has had enough of this organization that claims to speak for them.  If you are in Portland this weekend, please contact Elesia at elesia.ashkenaz@gmail.com to find out how you can support autistic people in their fight for self-determination. The time is now, folks!

from the Autistic Self Advocacy Network:

Hello,

As many of you are aware, Autism Speaks sunk to a new low this week – even for them! The “I am Autism” campaign repeats the same tired old lies as the NYU Child Study Center’s Ransom Notes ads, which our community successfully stopped in 2007, and goes even further, presenting Autistic people as useless burdens on society, on our families and on the world at large. ” “I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the video campaign. Full text is available here. As we did in response to the “Ransom Notes” ads, we are preparing a joint letter from the disability community in response to these horrific statements, which we hope to have available early next week. If you are connected to an organization that might be interested in signing on to such a letter, please e-mailinfo@autisticadvocacy.org immediately.

In addition, we are encouraging people to act immediately by joining ASAN in writing singer Bruce Springsteen, scheduled to participate in an Autism Speaks fundraiser in November, to end his newfound association with this organization that devalues our lives and speaks about us without us. You can contact Springsteen’s publicist at mlaverty@shorefire.com or by phone at 718….

Finally, as we mentioned in our initial press release this morning, ASAN Activists and allies are preparing to confront Autism Speaks fundraising in their own communities. If you would be willing to organize a protest in your community, whether you are a self advocate, family member or other ally, please e-mail us at info@autisticadvocacy.org. There has never been a more important time for our community to assert our voice. Please help distribute this message.

Thank you and, as always, Nothing About Us, Without Us!

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

NOTE: ASAN’s Portland chapter is preparing a protest of Autism Speaks’ walk in Portland will be held this Saturday. To participate, please contact elesia.ashkenaz@gmail.com. ASAN’s Columbus chapter has been granted a permit to protest Autism Speaks’ October 11th walk. To participate, please contact myergeau@gmail.com. More protests are being planned. To plan a protest in your local community, please contact info@autisticadvocacy.org