cripchick's blog

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??