All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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25 April 2011

My Interview with The Riot!

I was recently interviewed by Nancy Ward who is an Editor for The Riot! newsletter. Here's the full scoop:

Nancy: Please tell me a little bit about yourself. What is your role with Autistic Self Advocacy Network, and what else would you like Riot readers to know about you?

Elesia : I am the National Chapter & Outreach Coordinator for Autistic Self Advocacy Network (ASAN). I also work with several other organizations including Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and Autism Women's Network (AWN). Classical ballet is a passion of mine. I love training and performing, in addition to reading and writing both fiction and non-fiction.

Nancy: How do you use technology in your daily life? And what works best for you?

Elesia: Technology is the mainstay of my job. I would be lost without my MacBook! ASAN Board members, employees, and Chapters are based all over the States. We use the Internet to communicate via email and Instant Message (IM) chats. Phone calls account for an extremely small percentage of communication.

What works best for me? Email or IM chat services such as Gchat or Skype--no phone or video, text only.

Nancy: Why is technology important to you?

Elesia: Not only am I Autistic, but I am also Deaf. The Internet breaks down--if not smashes--communication barriers often presented through traditional work styles. For Autistic people who struggle with communication issues, and/or sensory overload, connecting via Internet can provide a much better option for meaningful participation. Conducting meetings online when possible via an IM chat service is extremely important. Phone conversations and/or meetings can pose a problem for Autistics who have Auditory Processing Disorder and who might struggle with voice as opposed to text. IM chats also often provide a workable solution to address social anxiety issues.

Melanie Yegeau, an ASAN Board member, brought up a lot of points when we recently spoke about technology. In summary, at root, the digital divide issue has to do with accessibility (very broadly speaking). Adam Banks' book Race, Rhetoric, and Technology breaks down access into some very handy-dandy categories.

-- First: there is material access -- that is, having the means to own a computer, pay for the internet, etc. (An aside: This is certainly an issue that Autistic people, and disabled people more generally, face. Unemployment and underemployment rates for Autistic people are high.)

-- But access isn't just about having money to buy things. This is a fallacy. It also involves functional use: that is, understanding how to use technologies in fruitful and productive ways. Social media can be of immense benefit to Autistic people, especially in a self-advocacy sense. But we're not necessarily trained to be self-advocates, and we're certainly not trained (at least not very often) to use social media for advocacy and activism purposes.

-- According to Banks, another layer of access includes critical use: that is, understanding the advantages and disadvantages of technology, and having the option to resist use of certain technologies. Again, this can present a problem for Autistic people: In what ways are we afforded the right to refuse to use something -- be it a specific computer program, certain AAC device, picture board, etc.

A lot of positive things surrounding critical use have come up for Autistic people. We don't just use social media because it's there -- we critically analyze its positives and its drawbacks.

-- Banks says that the most encompassing form of access is that of transformative access. This is key to self-advocacy, and key to surmounting the digital divide. Transformative access involves direct participation in the very design of certain technologies. I feel transformative access is another name for universal design. A technology cannot be truly accessible unless its users are also its designers.

Nancy: Given all the different types of technology tools that are out there, how are you able to get information out to ASAN members quickly, especially for things like legislation and budgets that might need quick action?

Elesia: Here I am answering Internet to every question. And it's time to do so again. Internet. Internet. Internet. Smiles. Honestly, it's really simple: We send mass emails, post to listservs, post to social networking sites such as Facebook, and connect with committees, organizations, and other persons within the broader disability community.

Nancy: Members of a self-advocacy group might have a different understanding about how to use technology. How do you teach somebody who is just learning?

Elesia: Part of my job involves teaching Autistic self-advocates how to use technology. Sometimes, it boils down to me sending an email to a potential ASAN chapter leader with instructions on how to go about downloading and signing into Skype. From there, we might have an IM chat--including step-by-step instruction--on how to set up a Meetup site to advertise their chapter. In a nutshell, if someone can understand how to send and read a basic email, that is all I need to do my job efficiently.

As for accommodating people who are just learning how to use technology, this is a goal we're continually working toward. Not all Autistic self-advocates have access to computers, and some individuals may have a difficult time using computers, reading instructions, etc. There aren't always easy answers, which leads me to note what access and self-advocacy are about... constantly brainstorming on what we can do and how we can do it better and more inclusively.

Nancy: Do you think that technology is going to be something we use in the future as a tool?

Elesia: Yes! And I wouldn't want to be a part of a future that shunned technology. Speaking of technology, I just got a new Apple iPhone 4. Now I am connected wherever I go via plane, train, or automobile (as long as there's a service tower near). Within the span of 15 minutes, I can:

1. Have an American Sign Language conversation with my husband using FaceTime Video Call

2. Text message my lovely boss, Ari Ne'eman, and request an extension on an assignment because it got put off due to my excessive YouTube ballet video watching (kidding Ari!)

3. Download the latest e-book on Disability Rights

4. Send an email

5. Surf the web, or post a message to Facebook

6. Chat on Skype

All of this happens from a phone the size of an extremely thin camera. Will smartphones and technology be something we use in the future as a tool? You bet! They are the future!


  1. Thank you for sharing that! It's great to learn a bit more about you and the work you're doing with ASAN.

    On a personal note, I love Skype because it offers so many ways to freely/inexpensively connect far-flung people for communication. It's a really great tool.

  2. Glad to have you as a reader, Stephanie! :)

  3. I'm glad to be a read...even if I need to take a break occasionally.