[ASAN-Newsletter] September 2011

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Volume 1.4 September 2011

From the Board

Birthdays can be exciting times. Not just because of the cake and balloons and presents, but also because they give us an unrivaled opportunity to think about how far we've come in a short time. What's changed over the years?

How have we changed? How have we grown? What has all that change and growth taught us? Where have we been in the past years, and most importantly, where do we want to go next?

As ASAN approaches our fifth birthday this November, we have an opportunity to reflect on what we've accomplished over the course of our short but exciting lifetime as an organization. Sure, we're excited about our upcoming celebration at the National Press Club. Who wouldn't be, with such well-wishers as Assistant Secretary of Education Alexa Posny and Administration on Developmental Disabilities Commissioner Sharon Lewis joining us? But more importantly, we're excited about the chance to think about all that the self-advocacy movement has accomplished over the course of the last five years, and all we can accomplish over the next five if we work together.

Five years ago, the idea of self-advocates serving on autism-related boards and commissions was still considered novel and controversial. Five years ago, offensive and unethical ad campaigns like the NYU Child Study Center's "Ransom Notes" campaign could go forward without a strong, unified response from the autism and Autistic communities. Five years ago, Autistic people were excluded entirely from the national policy-making occurring about us, without us. Five years ago, autism research was almost entirely something conducted on Autistic people instead of with Autistic people. Five years ago, society could get away with ignoring our voices.

Today, things have begun to change. We won't claim we're all or even most of the way there yet. And we can't and won't try to take all the credit for what has been accomplished - this has been a team effort, with self-advocates from all walks of life and many different organizations working together with our allies in the parent and professional community to empower disabled voices. Still, we have much to be proud of.

We've teamed up with family and provider organizations to get groundbreaking new legislation introduced on issues like restraint and seclusion and transition to adulthood for youth with significant disabilities. We've put ethical issues on the map in autism research circles, and this December ASAN will be teaming up with partners at Harvard Law School to conduct a symposium on Ethical, Legal and Social Implications of Autism Research. Through collaborations like the Academic Autistic Spectrum Partnership in Research and Education, self-advocates and traditional researchers are finally working together to address issues like health care access in a participatory fashion - looking at us as partners in research instead of just test subjects. Today, Autistic self-advocates have more representation in policy-making, research, media, and other walks of life than we ever have before. Much more is necessary, but what we've achieved is worthy of celebration.

As part of your reflection, please consider supporting ASAN's work by buying a ticket to our five-year anniversary celebration fundraiser on Nov. 16 at the National Press Club. Or, if you aren't able to attend, consider making a donation anyway or asking another organization or a local business to contact us about becoming an event co-sponsor. Your support will help make a difference to ensure those in power hear all of our voices. Our community is strong and has room for much diversity. Whether it is long standing bulwarks of our community like Autreat or innovative new initiatives such as AASPIRE or the Autistic Passing Project, the Autistic Community has achieved much to be proud of. If we stand together, we can achieve even more in our next five years.

Chapter Spotlight

Sacramento Chapter



ASAN Sacramento leader Andy Voss and chapter members Shayana and John attended the MIND Institute Conference at Sacramento State University in August, tabling in the same space as Autism Speaks and other major autism organizations.

The Sacramento chapter handed out information about ASAN and spoke with many parents, teachers, and doctors of autistic children, including some who were new to the autism community. ASAN Sacramento handed out between 50 and 60 flyers and was able to introduce the concept of neurodiversity to a wider audience, making this outing a great success for ASAN.

You can visit the Sacramento chapter's website or its Facebook page for more information about joining.

Chapter Leaders: Andy Voss and Zachary Miller

ASAN Sacramento Upcoming Event:

What: Protest of Autism Speaks in Sacramento

When: Oct. 9, 2011, 11 am - 2 pm

Nothing about us without us!

With millions of dollars going to curative research, a powerful media campaign reinforcing negative stereotypes, and a sometimes outright refusal to consider diverse Autistic viewpoints, Autism Speaks presents a danger to the Autistic community. Instead of trying to normalize Autistic people to get us to fit in, we wish to establish a community on our own terms in order to gain widespread acceptance as ourselves and not the imaginary people some wish we were.

Join the Autistic Self Advocacy Network in standing up for neurodiversity and the rights of your fellow Autistic citizens and breaking the monopoly on autism discourse!

Facebook Event and Details

Poetry by Amy Sequenzia

My Voice, My Life

copyright 2011 by Amy Sequenzia

Look at me
Go ahead, take a good look
What do you see?
Weird? Silly? Pitiful? Can't do anything?
You might feel sorry for me
You might pity me
You probably think I should be treated like a child
I've heard and seen this before
"Can she understand me?"
"Does she know what is going on?"
"How can she make choices?"
I understand your confusion
But it is time for me to come out
Let's just make something clear
I am autistic
I am disabled
I have many special needs
I look different
I need help eating, walking, moving around
I do not need help
THINKING
That's what you do not see
Look at me again
What makes you think I don't have an independent mind?
Have you tried to get to know me?
I have dreams, wishes, opinions
I also have a disability
That prevents me to communicate like most people
I have other disabilities that make me physically dependent on others
That's who I am
That's who you might have to deal with
Imagine how it would be
If you were discriminated against
Without a chance to show your inner self
Without a chance to speak up
That was my life for a long time
It hurt then
The discrimination still goes on
It hurts now
But I decided that I have more to say
Then you might want to listen
I will make the best use of all my rights
As a human being
I have a voice
It is MY voice
I now reach out to you
If you want to enrich your life
If you believe you can see beyond what other people tell you to see
Come and meet me
It will require patience
Because my way of processing
Feelings, thoughts, words, emotions
Is different
But they are still
Feelings, thoughts, emotions and words
I promise to be patient with you too
Because your way of communicating
Is probably very strange to me
I might even think it is weird
I am growing as a person
I fight hard to make a difference
It is now your turn
Are you ready to grow as a person?
Are you ready to look at me
And see beyond the "normal"?
What is "normal" anyways?
Let's try to understand each other's languages
Try to learn what is so clear
There is no "normal"
There is Diversity
And that's why we are so unique

Autistics Speaking Day 2011 | Nov. 1, 2011
by Kathryn Bjornstad

In November 2010, Corina Becker proposed Autistics Speaking Day to protest an event called Communication Shutdown. That's how it started, but it grew into something more. Autistics Speaking Day, or ASDay, was meant to object to the silence of Communication Shutdown by having Autistic people be as loud as possible and to criticize Communication Shutdown's goals, methods, and motivation. By November 1, it was about Autistic people speaking out about their experiences and their beliefs for the world to hear, and Communication Shutdown was at the back of most people's minds. It took on a life of its own, and by then we knew that it had to continue.

My participation in ASDay changed my life in ways I can't completely describe. I was inspired by Corina's words to create an event page and to try to attract as many people as possible. When I saw how effective ASDay was, it empowered me to start advocating for myself and to become involved with ASAN. It empowered at least 80 people to write about their experiences, to feel less alone and less passive, and we reached over 2000 people from all over the world that day. There is potential to reach even more people this year and to have even more Autistic people participating and sharing their words with the world.

Too often autism-related organizations and events are started by the non-autistic relatives of Autistic people, and there is a painful lack of Autistic presence in these events and organizations. Decisions are made without us, assumptions made in our absence, and often Autistic people are made to feel alienated and unwelcome. There is a need for organizations and events started by Autistic people and that promote Autistic voices.

The goal of ASDay is simple: to encourage Autistic people to speak and to share their words with as many people as possible. We want to encourage autism awareness and autism acceptance. We want as many non-autistic people to read our words as possible so that they can learn that our worlds exist. We want Autistic people to meet each other and learn from each other. We want to create a safe place for Autistic people to speak and to share each other's words, to make our voices heard, to let everyone know what Autistic people think. On Nov. 1 this year, the Internet will be flooded with posts from Autistic people and their allies, saying what they have always wanted the world to know, and I hope that it will be another day of empowerment and acceptance.

We've made efforts to reach more people this year with an official Autistics Speaking Day blog, Twitter account, Facebook page, and e-mail address. I hope you will join us and help us make ASDay 2011 as amazing as ASDay 2010.

http://autisticsspeakingday.blogspot.com

ASDay Event Page on Facebook

University of New Hampshire's Autism Summer Institute
by Zoe Gross

Day two of the University of New Hampshire's Autism Summer
Institute began with this puzzling announcement:

We want to let you know that in your provided conference materials, you'll find this book that has great first-person stories from people with autism.... autistic people - autism... individuals who experience ASD...

This particular conference broke new ground for the Autism Summer Institute (ASI) - it was the first time collaborating with ASAN to explicitly include the perspectives of Autistic people. I attended the ASI as one of several ASAN representatives

(Pictured left to right: top, Ari Ne'eman, Scott Robertson, Julia Bascom; bottom, Melanie Yergeau, Zoe Gross, Emily Titon) and was able to witness this transition firsthand. There were several awkward moments as the conference's organizers and attendees adjusted to our presence - for example, the scramble to reconcile our preferred identity-first language with the person-first language used by professionals, which resulted in the intricately phrased announcement about conference materials. Ultimately, however, the ASI brought professionals, parents, and self-advocates together to learn from each other, an opportunity for which I am grateful.

One of the things that ASI changed in its collaboration with ASAN was the introduction of a new "strand" of presentations, Strand C, which were mostly given by Autistic people and aimed at a self-advocate audience. Scott Robertson informed conference attendees about autism and higher education. Ari Ne'eman gave an informative presentation entitled "What do we want? System change! When do we want it? Now!" which dealt with the realities of working to influence American public policy. The last presentation given to the intrepid members of Strand C came from Melanie Yergeau and Julia Bascom. Entitled "What Autistic culture can do for you," it explored the importance of Autistic culture in fighting stereotypes, fostering self-advocacy, and creating disability pride.

Unfortunately, although Strand C was developed with self-advocates in mind, only a few people with disabilities attended the conference aside from the presenters themselves. Because of this, Strand C was mostly attended by parents and professionals interested in transition-to-adulthood issues. This is not to say that the presentations were not well-received: at most of the workshops that I attended, the audience actively engaged the presenters in discussion. However, ASI would benefit from increasing its recruitment of Autistic participants in future years.

On the positive side, disabled voices were represented not only in Strand C, but in the presentations which were given to the entire conference. On day two, DJ Savarese showed us video from performances of plays that he has written. He also gave the conference a sneak peek of a documentary about his college application process, which he is working on before he begins at Oberlin University next year. Students from the I Am Norm campaign arrived on day three. Their presentation included a video about the creation of I Am Norm, from teenage Autistic filmmaker Drew Goldsmith. ASI attendees also had the opportunity to view two recently-released documentaries dealing with autism and neurodiversity: "Loving Lampposts" and "Wretches and Jabberers."

While I enjoyed all of the workshops and presentations, and the opportunity to network with professionals working in the field of autism, my favorite part of the ASI conference was the time that the Autistic self-advocates made for ourselves. It's important to make contacts outside of our community, but equally important to continue building Autistic culture. I hope that ASI continues to provide us with opportunities to do both.

Advocacy Updates

ASAN Announces New Program on Ethical, Legal and Social Implications of Autism Research

Although research represents a huge component of the national conversation about autism, very little attention has been paid to the ethical issues posed by new developments in autism research and the ways in which this research is frequently conducted. To address this concern, ASAN has just received a grant from the Administration on Developmental Disabilities to conduct a new program relating to Ethical, Legal and Social Implications (ELSI) of Autism Research. The project will focus on ethical concerns in autism research, such as prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals, enhancing the effectiveness and inclusivity of Institutional Review Boards, setting diagnostic criteria, and balancing competing concerns of safety and self-determination. ASAN will launch the project in December at Harvard Law School with a Symposium of researchers, self-advocates, family members, and activists.

Following this, ASAN will work with symposium participants to produce a series of policy briefs outlining these issues and providing a framework for future action on the part of researchers, policymakers, and community partners. To broaden the scope of this discussion, accessible language versions of these briefs will be developed and included in dissemination. As part of this project, ASAN will be collaborating with the Harvard Law Project on Disability and the Petrie-Flom Center for Health Law, Biotechnology and Bioethics. ASAN's ELSI project is particularly timely given the National Institutes of Health September symposium on the same topic, which included ASAN Staff Member Paula Durbin-Westby and Friends of ASAN Christina Nicolaidis and Liz Pellicano.

If you are interested in playing a part of this project or in learning more as our plans develop, please contact: aneeman at autisticadvocacy dot org

ASAN Meets with Transportation Security Administration

On Tuesday, Sep. 20, ASAN President Ari Ne'eman and self-advocate Lydia Brown met with officials from the Transportation Security Administration's (TSA's) Office of Disability Policy and Outreach to discuss TSA policy regarding individuals with hidden disabilities gaining access to accommodations during the aviation security screening process.

The discussion opened dialogue about ways that the disability community might be able to work with the TSA to collaborate to make the security screening process more accessible for air travelers with hidden disabilities, including developmental disabilities.

ASAN is particularly concerned about the difficulties Autistic and other developmentally disabled people may face during a procedure that can already be stressful and taxing for non-Autistic people. As people with hidden disabilities - a broad term that includes mental illness, cognitive impairment, and developmental disability - may not appear to be disabled, a request for an accommodation, such as being allowed access to the front of the line(standard procedure in security screenings for any person with a disability) may be denied. Recently, ASAN has received multiple complaints from Autistic people who have run into problems of this nature during the airport security screening process.

ASAN is interested in continuing dialogue and potentially collaborating with the TSA to address a myriad of issues that may arise for Autistic people encountering TSA officials at airport security screenings. To learn more about ASAN's work in this area, or if you have a story about discrimination or lack of access to accommodations during an airport security screening process, please contact us at: info at autisticadvocacy dot org

Ari Ne'eman Speaks at My Medicaid Matters Rally in Washington, D.C.



Over one thousand advocates gathered in Washington, D.C., on Wednesday, Sep. 21, to protest potentially devastating cuts to Medicaid in the midst of the federal budget crisis, coinciding with fourteen other My Medicaid Matters rallies nationwide on the same day.

Among leaders of dozens of national disability and aging organizations, ASAN President Ari Ne'eman spoke during the rally Wednesday against the possibility of cuts to Medicaid that could adversely affect millions of people with disabilities in need of health care and long term services and supports.

Medicaid is a joint federal and state-funded program that provides health coverage to certain low-income beneficiaries who must fall into specific eligibility criteria, including the elderly and the disabled. Of 58 million Medicaid recipients, 8.7 million are disabled, including people with developmental disabilities.

The newly created Joint Select Committee on Deficit Reduction (AKA "The SuperCommittee"), tasked with creating a deficit reduction plan for review by Congress this November, is considered likely to make serious cuts to Medicaid. These cuts could severely curtail or eliminate the benefits of millions of beneficiaries. Most of the deficit reduction plans floated to date have included serious cuts to the Medicaid program and other "entitlements." Cuts to Medicaid will reduce the availability of health care for and shift costs to low income individuals and people with disabilities - the very individuals that the program was designed to protect. ASAN is working alongside hundreds of other national disability and aging groups to protect the Medicaid program and its beneficiaries.

In the News

Multiple Perspectives on Access, Inclusion and Disability Conference

The Twelfth Annual Multiple Perspectives on Access, Inclusion & Disabilities conference will be held at Ohio State University - Columbus on Apr. 24-25, 2012. Goals for the conference are to promote change in attitudes and behaviors and to create collaborations among individuals and organizations. The 2012 theme, "Experience Understood in Image, Poetry, Narrative and Research," explores disability as a "human condition as seen through the lenses of environmental, theoretical and social constructs as well as personal experience." A Call for Papers has been sent out with a deadline of Dec. 5, 2011.

Disability Services Cuts Investigated

As California's public colleges and universities face budget pressures, some students have reported that disability accommodations are not being provided to them as required by law. Disability Rights Advocates, a non-profit legal center located in Berkeley, is investigating complaints regarding cuts in services. California college students who have had requests for accommodations denied or significantly delayed can contact DRA attorney Rebecca Williford for assistance.

Youth Transition Toolkit Available

The public information program Talent Knows No Limits has developed a toolkit, with the active participation of young people as community partners in the project, to assist with the transition to adulthood. The toolkit provides advice, worksheets, and other resources to prepare young people with disabilities to make informed choices as adults. Click here to visit the Youth Transition Toolkit website.

The Significance of Semantics

Autistic self-advocate Lydia Brown has written a thoughtful article discussing how identity-first language differs from person-first language and why it matters. While serving as a member of a Massachusetts legislative subcommittee on autism services for adults, she decided to research the issue after the subcommittee's members disagreed about the language to be used in their report. Those on both sides of the debate, she observes, want to emphasize the value and worth of the person. Both sides also recognize that word choices play a large role in shaping societal attitudes.

She explains that many self-advocates oppose the use of person-first language because it "suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin."



The Autistic Self-Advocacy Network (ASAN) is a non-profit organization run by and for Autistic people, fighting for disability rights in the world of autism. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community.