“How do we, as AAC users, make people stop and listen to us?”
“How do we elevate individuals who use AAC to become more of a contributing factor to their community and society as a whole?”
"How do you make yourself heard when most people don’t wait to listen?"
Those are just three of the questions asked by people who rely on augmentative and alternative communication (AAC) at our first in a series of events with civil and disability rights leaders. The July 17 event, celebrating the 30th anniversary of the Americans with Disabilities Act (ADA), featured disability rights legend and CommunicationFIRST Board member Judy Heumann, and was moderated by prominent AAC users Bob Williams (CommunicationFIRST’s Policy Director) and Hari Srinivasan (UC Berkeley senior psychology major).
One goal of this event (and the series) is to allow the very diverse community of people who use AAC get to know each other better and to see commonalities despite different labels. Another is to allow prominent leaders to become more familiar with our diversity, issues, and concerns.
Judy’s book, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, was released earlier this year. She also stars in the full-length feature documentary Crip Camp: A Disability Revolution, available on Netflix, about US disability rights history. Thirty years ago, Bob lobbied for the passage of the ADA using AAC tools and supports. Hari, born after its passage and also an AAC user, is a member of the “ADA Generation.” In this online event, Judy, Bob, and Hari participated in a talk show-style discussion about the ADA’s relevance and promise for CommunicationFIRST’s population -- people who cannot rely on speech to be heard and understood.
Around 200 people attended from 9 countries and 31 US states.
Watch the recording (captioned, with ASL interpretation) (YouTube)
Access the transcript (PDF) (GoogleDocs)
Feedback
- “I was so moved by the AAC user chat on Friday and feel strongly that the work you are doing is the beginning of something very powerful. Indeed it is an enormous effort to start up a national nonprofit formed to achieve a paradigm shift, and the work is so important and necessary and I want to help however I can! Thank you for all your hard work and dedication as you are making meaningful changes that will impact the lives of many.”
- “Fabulous offering today. Congratulations! Well done.”
- “He’s talking to us about his experience over and over. Thank you so much for all that you do.”
- “Brava! That was fantastic and very inspiring. I can’t imagine the amount of work and stress that went into making this wonderful webinar a reality. It was well worth it from our family’s perspective. It was also exciting to learn about the work you’ve already accomplished. [Name redacted] watched the entire webinar, which is something of an accomplishment for him. After he wrote: ‘watching my team answer wonderful questions lifted my awareness about AAC people.’ I second how great it was to see the diversity of people using AAC and their various methods and tools. Thank you again for your generous work on behalf of our community! … It is exciting to see a wider gathering of ‘AAC people.’”
- “It was amazing listening to Judy, Hari and Bob. I am hopeful for the future after November.”
- “The chat on Friday was great! I hope you are getting positive feedback. Especially powerful was the Q&A section -- getting to see a variety of folks using their AAC devices to communicate is always galvanizing, especially for other AAC users. My son Ben comments on how inspiring and motivating this is for him. Judy's message to AAC users really hit home here. Can you send out Bob's introductory remarks to all attendees? We'd love to read them again. … Thanks for all you are doing! We remain steadfast supporters.”
Questions Submitted by AAC Users
About Activism and Advocacy Generally
- How do we, as AAC users, make people stop and listen to us? So few of us have access to education/AAC/politics, i.e., community.
- How do we elevate individuals who use AAC to become more of a contributing factor to their community and society as a whole?
- What, in your opinion, should be the new disability rights or disability justice goals for this new generation of activists?
- How can we be better influencers, especially during COVID-19?
- How can I best get people to accommodate, listen, get to know & respect me as a person in healthcare & in the community?
- How can we help our society realize that people with disabilities are still horribly marginalized in America today?
- How can we improve collaboration within the disability community between those with PD [physical disabilities] and ID [intellectual disabilities]?
- How do we curb the conversation from the current one which seems to be a competition for who is the most marginalized population?
- How can we get more people with I/DD involved with disability rights/justice?
- How did you recruit allies in the early days of your efforts? What was your approach with unions & Black Panthers?
- How do you decide when to let ignorance take the stage so you can focus on your own personal growth, and when do you have to put your other struggles to the side and stand up and say stop?
- I’ve talked to my school board. I’ve talked to our city council. What else can I do to make my town better?
- What have you found to be the most effective way to create real change in our systems and in social paradigms that support them?
- How do disabled people sort out humanity's ableism, ostensibly becoming first class citizens? I want to hear what Judy thinks is still preventing people with intellectual or cognitive disabilities from truly being treated and regarded as full members of today's society from two lenses: 1) as a person with a disability, and 2) as a non-disabled person (such as a parent or sibling) who doesn't experience what we do but still cares deeply.
- How to go to more big places?
- In advocating for disability rights, how did the group stay focused on the common goal with so many disabilities represented?
About Specific Issues
- How can we best advocate for AAC users in healthcare and in the community? In your vast experience, what is the most direct path or methods you recommend?
- I think it is important to stress that AAC comes in many forms. When I use a revoicer, that is also a technology, a form of personal assistance or interpreting if you like. How can we best coordinate with the Movement for attendants so that all our helpers get well paid? My revoicers earn in-between what a traditional attendant and an ASL/Captioner earns. I have insisted that they be treated as a professional. Some of us need PAS to access AAC as well, as PAS is AAC.
- What do you see as the biggest challenge going forward for AAC users as a movement and what suggestions do you have?
- We have a segregated school here where most students don’t speak. Almost no students have AAC either. How can we change that?
- What advice do you have for an AAC person who is trying to convince universities that more time is needed to complete a course?
- What can disabled researchers and academics do to bridge the gap between disabled communities and researchers/academics?
- Why do you think disability history isn't being teach in public schools?
- What can we do to advocate to improve employment options for people with disabilities?
- Is there a real potential to have our SSI go into ABLE Accounts so that we can finally save money, and how do we make this happen?"
- This is excellent. I would like some ideas about how to politicise British AAC users.
- Just a thought of using an non invasive AAC solution. Non invasive aac poses a whole new set of issues; one is regulation of the speech coming directly from our brain. The struggle will always be there one way or another. So no matter how advanced the technology is, the point of conflict is still and will be how people receive our communication and react to it. It's still a social issue. I look at my 4 year old nephew, because he was exposed to the way I communicate with and without my device. He doesn't see it as being weird and can understand me better than long time SLPs can just because of consistent exposure. So my question is, do you think it's more a technology obstacle we need to advocate for, or more exposure to people who use AAC? Like Speechless, like Breaking Bad (Tito Salamanca), like Crip Camp (love the scenes where you Judy were talking to Steve and others using their natural voice, and it was so natural).
About Policy
- What is currently your #1 legislative priority for disability rights and how can we support it?
- I would like to hear from Judy on what's next for disability rights and inclusion. The ADA was a watershed moment, but not perfect and seems to continue to put the onus for civil rights on the pwd rather than on society and our communities to create inclusive environments and ethos. Where does she see progress toward seamless disability rights and inclusion potentially moving next? Thank you!
- How do we move beyond minimum ADA requirements to full inclusion of people with disabilities in our society?
- Who is doing the best job of playing access watchdog for the Internet?
About Rights
- What is my rights as a disabled person?
- Hi Judy, I know you were a leader in advocating for Section 504 and the Americans with Disabilities Act. How do you think the ADA is working now? What additional protections for people with disabilities need to be put into law?
Seeking Advice
- Do you have any tips on how to engage with people who speak to you as if you don't quite understand? Has this happened to you?
- I have explored running for state house and US House only to be told that I talk too slowly. I am well known in my community. I speak all over this community … and country. I would love to make a run. Everybody I have discussed and met with has loved this idea, however nobody wants to be on a committee. Any advice how to get a committee together for 2022?
- I have found that when I push myself too hard in one area, that ultimately causes other areas of my life to suffer. Can you share strategies you used to decide how to find the line of trying too hard to overcome your disability, and how you decide when to just say you can’t overcome that aspect of your disability, and will always need help with that task?
- What is the foremost quality I would need to develop to be a disability right activist?
- What is the best way for individuals with autism to communicate if they are nonspeakers and want to go to college?
- How do you make yourself heard when most people don’t wait to listen? Especially in a workplace setting?
- I know that many do not believe that I am the one communicating when a partner holds the letterboard for me. Did you ever face the same type of doubt in your abilities? How did you get past that?
- When I get frustrated because I can't say all I want to say, what's your advice for keeping my spirits up?
About Judy
- Would your parents have sent you to Camp Jened if they knew all the shenanigans that had happened while you went there to camp?
- What is your favorite thing about your advocacy work?
- What made you want to become an activist?
- How was your life back then?
- What inspired to get into disability rights activism?
- How did you stay motivated in the struggle?
- How do you cope with the world?
- How do you keep the faith these days, in this political climate?
- I lack autonomy due to my fears of growing up. How did you become so confident?
- Would you like to help me to start a service for people who have a physical disability that can't relief themselves?
- Can you move to England please?