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

As an event planner and a member of communities that are often excluded, I have learned a lot about what people need to participate and wanted to share (and learn) with you. This is a page on all the things people forget about accessibility [basic things to make it easy for people to be a part of something]. Can folks add to this list in the comment sections? When are times you have been excluded? What do you need to participate? Are there things (movements! organizations! listservs!) you are not involved with because of access or a feeling of being unwelcome? If so, I would be sooo thankful if you could share that experience so we could learn from it. xoxo– cripchick

Accessibility is:

do you have childcare so parents can come? will kids be safe and have programming so parents don’t have to worry about them?

do you have different payment options? if people can’t afford your event, can they volunteer their time or services instead?

how do people hear about your events? is it just email and facebook or do you use mailings and phone trees too?

with a long history of trans and genderqueer people being harrassed and in danger when they go into bathrooms, do you have bathrooms where gender does not matter? a lot of times gender-neutral bathrooms are single-room bathrooms where disabled people can also go in with their personal attendants or parents can take their kids. this is helpful for everyone.

do you ask about people’s allergies or if they need vegetarian, vegan, gluten-free, etc?

is Point A far from Point B for folks that walk? what physical barriers are there?, if you’re going to close meeting room doors, are they heavy?, are there chairs for people? are the chairs wide enough that everyone can be comfortable? it’s cool to be creative about making things work but know that if basic access requires a lot of energy, people may not come.

always be aware of time. if you are planning an event, it’s important that people know the schedule and you try your hardest to stick to it. many autistic people cannot participate if you don’t do this. for disabled people who have to schedule out transportation, bathroom trips with personal attendants, etc, a schedule that is always changing means they will miss programming (don’t assume people can stay a hour later if you’re late on schedule!) if there must be schedule changes, be clear about them so people know.

if people request it, are your documents available in large print, braille, on a cd, or in another language? did you set aside money for ASL (or other languages) interpreters so people can request them? do people know that they can ask for these things?

is everyone saying their name before they speak? if you giving directions, do you know how to explain it to a person with a visual impairment? if you are watching a movie, does it have audio description or are you prepared to describe what is happening visually? if it is a multi-day event, can you arrange a time where people can go on a tour of the buildings so they know where everything is?

does everyone know what you are saying? are you using word everyone knows and if not, can you explain those terms? do your documents and presentations have pictures that explain what is happening?

are you using a variety of different formats? (e.g. media wise— documents, videos, audio, pictures. Presentation styles—large group, small group, interactive activities, art-making, etc?) are your rooms big enough that people can walk around or stand during your presentation if they want to?

if you are hosting an event, do you have a space where people can go if they need to be alone? do you have flexibility so people can step back if they are getting overstimulated or tired? (for safety at youth events, this works well with a “buddy system” so people can tell someone they are taking a break). it is also helpful to have another lounge where people can go take a mental break and socialize. (this also helps clears up congestions in hallways)

are you committed to creating an environment where people feel safe? allowing people to make comments that are racist, sexist, heterosexist, ableist, classist and more make it hard for people in these groups to participate. try to understand the historical context behind what you say

if you are about to use a really graphic image, phrase, or story, do you let people know? are there kids there? people in your audience may be survivors of abuse or have PTSD, better safe than sorry.

can you arrange for a message board system so people looking for rides can share?

are you respectful of people’s preferred gender pronoun, disabilities (not all disabilities are visible, go by what folks say instead of assumptions), and backgrounds? remember that no one ever owes you an explanation for who they are.

What else is missing yall??

everyday people brush us off  ’cause we talk a little differently, think a little differently, move a little differently or because we are from group homes, in the foster care system, etc. they just don’t know. i love how creative you are.  give you thirty minutes, markers, poster paper, and you come up with hot shit like this:

we get painted as consumers, objectives of charity and service. when we’re quiet, they think we don’t have something to say. i love your activist heart and how fiercely it beats when we come together.

while debates around language are storming around us, here you are unashamed and carrying disability pride posters, naming our tables the “disabled and proud team”, and wearing hot crip gear. i love how subversive i feel when were populating the room with resistant bodies!

the other night when we were doing check-in, you all said you were doing great because you loved being with each other. i wasn’t sure if you were just telling me what i wanted to hear. it’s easy to get sucked up into the non-profit industrial complex and even easier for this to be just another disability conference on the calendar. i love how much this means to you. i love that, like me, you were so excited about seeing each other this week you couldn’t sleep. i love that you drove 3 hours to get here. i love that even though we were in the middle of this spontaneous, unorganized group meeting, you said we were more organized than everyone else because we had tshirts. : )

i love the way that every time there was a time to speak, it was our crew picking up the mic! (how did this even happen?)

i love the way that you are leaders. it’s funny to me, we moved away from a “youth leadership model” into one of community building and ironically, we have more leaders than before.

i love the way you are not afraid to speak your mind. you know how to kick it with legislators, other disabled people, allies, the cop coming to check our permit—everyone!

i love the way you look out for each other. i love the way we know each other’s access needs and the interdependence that happens when we are together.

i love the way you create safe space for each other.

i love the way you know how to party.

i love the potential we have. i love how beautiful you are!

total Disabled Young People’s Collective fangirl here. isn’t my crew amazing, yall??