BOB WILLIAMS
Bob Williams is currently the Special Assistant to the Director of the D.C. Department on Disability Services.
Bob served in the Clinton Administration as Deputy Assistant Secretary for Disability, Aging and Longterm Policy at the U.S. Dept of Health and Human Services, Washington, D.C.
I bet Bob had to program that title into an automatic response button on his augmented communication device *smile*. It would take way too long to say, much less spell out letter by letter.
Because Bob has cerebral palsy and doesn’t speak with words, he knows the importance of augmented and alternative communication.
He wrote the TASH resolution on “The Right to Communicate” (click here).
“What if???”
I first met Bob Williams when we were both serving on the TASH Board of Directors. At first, he seems shy but don’t be fooled–his power is in his message.
Below is a poem he wrote when Facilitated Communication first opened the communication door for many people with autism, including Aaron.
What if???
What if
autism is a mistake?Someone else’s
mistake?Ours;
not theirs.What if
autism really is…Flawed communication?
More ours
than theirs.What if
the TruthSuddenly all came
gushing outLIke vinegar spray
or electric shock
from a Sibis*?What if
they started handing out NobelsFor humanity’s
inhumanity?Who do you think
would win more?Us or them?
What if
autism is a mistake?Someone else’s
mistake.Bob Williams
(*The Sibis helmet gives electric shocks to force compliance.)
If you have any doubt about the power of communication, check out Bob Williams as he talks about the ADA and “presumed competence.” In (about) minute 4 of the video he talks about the need for technology to assist in communication.
Health and Disability
Here is a speech Bob gave on Health and Disability (click here).
Linchpin
Bob would be what Seth Godin calls a “linchpin.” He is remarkable and “pokes the box.” He has influenced the President of the United States; laws like ADA, IDEA and the technology act; national policy; parents, self-advocates and everyone he meets. The world is a better place because of Bob Williams.
Keep Climbing: Onward and Upward
All my best,
Mary
Comment:
Did you feel the passion and power of the poem? Any other “What ifs???” in your life? What did you think as you watched the Bob Williams video? Did this make you want to try just a little harder to communicate with people who don’t talk with words?
Related Post: The Right to Communicate| Wretches and Jabberers
Thanks, Mary. I just need to point out one error. You say I do not speak words. Actually, I do and so do other people using various forms of AAC. Just because others fail to understand our words does not take out from their import. I point this out as I frequently do because I think we rob people of their power when we label them nonverbal, nonspeaking, wordless, languageless, this, that or the other. Be well. Bob
Hey Bob,
Thanks for stopping by. I apologize for messing that up. You are so right, it is my problem that I don’t understand your spoken words. Aaron also says many things and I only wish I could understand his intent. I keep hoping for the promise of mind-to-mind communication that is so popular in science fiction. That will be a blessed day–at least in terms of not needing the verbal exchange. Of course, it will open up other cans of worms.
Best wishes always. Mary
I do not mean to chastise… My real hope is to spur parents and professionalss to see how using such :terms heighten the barriers and cloak of incompetence that I see so many people with expressive disabilities needlessly face.
Point taken Bob. We need your guidance so thanks. How else will we learn?
Yes, what a great idea! I wonder what would it take to make that happen?
Institute on Communication and Inclusion at Syracuse University. (soeweb.syr.edu/centers & institutes/ici) and see us on Facebook.
I agree Bob! Wonder how we could get Bob to start gathering his work. It would be a gift to all of us.
Didn’t he have a book of poetry?
His book of poetry is In a Struggling Voice: The Selected Poems of Robert Williams, copyright 1989. It is available from the Institute on Disabilities at Temple University. (Item ID801, $15) http://www.temple.edu/instituteondisabilities/publications/ I agree that there needs to be a publication of his “collected works”. Great idea!
Thanks Judy–you are on top of things.
Wouldn’t it be great to have Bob’s book of poetry and “works” with Ed Roberts powerchair at the Smithsonian.
Just yesterday I was searching for some new thoughts by Bob Williams for our Introductory FC training 3/21/11 and 3/22/11. I found the picture and now, lucky day, the poem. Thank you Bob, for your bold and inspiring poetics. I’m looking forward to sharing it with the 30 or so participants ready to take supported typing to more and more people who have waited long enough! I remember the lemon juice and hot sauce interventions used on children at our local institution. We WERE wrong. At the very least may we begin with freedom of speech as an act of reparation. Type on! Wretches and check out the good news of the ICI at Syracuse University on Facebook.
I was surprised there wasn’t more on the web from Bob. He needs a press secretary:)
You are right! Freedom of speech begins it all. Type on!–that would be a good title for a post. Thanks Michele for all the additional information. Give us contact information for the ICI at Syracuse.
Did you see the picture link in the comments from Judy Bailey? It’s great.
Thanks for highlighting some of the work and words of Bob Williams. He certainly has been a powerful force for change and a great advocate and role model. The photo at this link is one of my favorites (at the White House with Obama and others): http://www.talkingpointsmemo.com/gallery/2009/08/behind-the-scenes-summer-at-the-white-house-part-ii.php?img=15 Yes, when I think of “What if” and presuming competence, I think of Bob Williams and what was possible for him with access to communication technology–and where he took it from there. The Resolution on the Right to Communicate is a very powerful document. Now if we can just get the US to ratify the UN Convention on the Rights of Persons with Disabilities . . .
Thanks Judy. What a great picture of Bob at the table with President Obama. I’ve never heard of TPM, but will check out more. Wonder if they picked up last week’s “send the retarded to Siberia story”?
Bob Williams continues to open doors for all of us, just by his being him. Not so many years ago we thought it only a dream that the President and his senior staff would listen and respect the words of a person who used a communication device. Bob made it happen.
I don’t know much about the UN resolution, but I can imagine.
Bob Williams is the most honest and efficent communicator that I have ever known. His clear sentences waste no words. His poetry opens the mind to so many clearer ways of viewing what is going on around us. It will be a wise publisher who will someday collect and print what he is saying in a hardcover or an Ebook. Bob Perske
)h one more thing. I remember reading of opensource speechboard program that can be used on many laptops, desktops and some phones.
Bob is a real pioneer. He has worked with technology companies and has been a role-model for a generation of young people. He can speak with his communication system better than I can speak with words. He is truly an inspiration of what can be. He is an example of “What if” we presumed competence and gave people the tools they need for their freedom.
Hi Mary I can thinl of way too many what ifs. Frankly I am impressed that someone like Bob even gets noticed for something other than his wheelchair and just not fitting the way he should sound or look. Iwish that more parents,scools,and adult programs made the knowledge of these alternativw forms ofcommunicating known and perhaps it might help to make them more of a cool andstylish sort of thing. That way when parents and other family hmembers are faced with such a choice the they won,t feel ashamed topublicly use them.