Advocacy. Witness. Hope.
These are the Closing Reflections I gave at the end of Autism and Advocacy: A Conference of Witness and Hope. I will be writing more about the conference over the next few days. It was phenomenal—thank you to all.
I’m so glad to be here with you.
With you who are here today—family, friends, teachers, therapists, friends I’ve known via email or blogs, until today.
And I want to thank, and I want to think about all of us who are not here today. Because they could not get childcare. Because they could get childcare but a day without that same parent smiling as the yellow schoolbus drives up is not going to be a good day.
It is not easy to get out, to go to conferences, even just to go to the grocery store, when you live with an autistic person. As Jim noted earlier today, it more than a little ironic that autism, originally associated with the isolation of an individual in him or herself, can have the effect of isolating all those around this person. And that is why the Internet can be such a powerful, and an essential, tool to bring us all together from the isolation of our homes and lives. And that is all the more reason why I am glad, we are so glad, to be here with you.
Diffability.
Q.B.E.
Timothy Shriver, CEO Special Olympics, used the term “diffability”—denoting difference of ability—rather than “disability” in his Opening Address.
Kassiane Sibley noted that she does not have any letters after her name unlike most of the conference presenters—P’d, H’d, d’s, for instance—Jim Fisher pointed out that she is one who speaks Q.B.E. (Qualifed By Experience).
These were some of the new words we heard today: I have expanded my vocabulary. What I would like to do now is to go back to some old words, to the roots of the words that are what this conference has been all about.
Advocacy, Witness, Hope.
Advocacy. “Advocate” is from the Latin root word, voco, “I call,” which is related to the word vox, “voice.” As the mother of my son who has autism, I am called everyday to translate—to voice—his sometimes garbled speech and his needs. I am called to action and to advocate, and to help to spread the word. I take this word to mean not only how can we advocate for more understanding about autism. The conference is also about how we—we who are not autistic—-can change ourselves; how we can begin to change the world to make it the best it can be for kids, for persons. Too often it seems, autism advocacy ends up meaning something like “advocating against autism”—advocating for a cure against what is seen as a devastating, tragic disorder that ruins lives and destroys hope. Autism advocacy need not mean such, and it can mean a lot more.
Witness. Martus is the ancient Greek word for “witness”; martus is the root word of “martyr.” As we use the word, a martyr is one who willingly suffers in the name of a cause, of a principle, for someone or something—-and so those who take care of autistic children may often feel and say that they have “sacrificed everything” for their child’s sake. But this is not what I mean by witnessing: Witnessing is about trying our very best to look at where our kids are right now—what is a child doing here, today, right now—-at who they are and at trying to understand what can we do not only to help them, but to help the “rest of us”—society, community, the general public, those who have no idea of what autism really is—understand how we can change to make the world a better place for autism, for the neurologically, cognitively different. A number of the speakers today made use of visual metaphors: Timothy Shriver noted that “I see you” is the greeting in a certain village in Africa. Many speakers talked about the importance—the necessity—if their autistic child beeing seen—in school, in church, in temple. Stuart Murray in his lunchtime presentation about “autism and Hollywood” referred to the use of “narratives of refraction” in films about autism such as Silent Fall, House of Cards, and Mercury Rising, and about how, in these films, the characters without autism are licensed to read the kids who do.
Witnessing is not about bemoaning the life we wished we could have had, but about seeing what is right in front of us, now, a person with autism. Witnessing is about autism advocacy as needing to start not with changing our children to fit some preconceived “dream” we once had for them, but in loving them as they are, for what they are, and trying to understand from there what we can do for them.
I once asked Bob Fisher, who is Jim’s cousin and a screenwriter, about writing an autism comedy. Much happens in our daily life with Charlie—-like our having to clean the entire bathroom, his’s bed, and him at 2am a few nights ago due to an upset stomach—that I prefer to laugh at. (Indeed, laughing in the midst of such a cleaning operation makes it a lot easier.) I noted this to Bob and he asked me, “What does Charlie think is funny?” And I had to pause to think about what makes Charlie laugh and it is not exactly the same as for me. (A Lego put into the toilet.)
And by striving to see what is funny from Charlie’s perspective, I try to understand what the world looks like from where he is.
Hope. To explain this last word, I turn to Charlie’s own voice.
“Hepp I needepp!”
Says Charlie as he pulls at a box, trying to get the cover off, or because he has pulled his pants on backwards.
“I needhepp!. Hepp, hepp, I need hepp, needope.”
Did he say “hope”? No, he must need help. Help or hope?
They are intertwined; they are the same:
“For many people, the word autism is synonymous with lost hope”: So an article in the September 11th Burlington Free Press (”More and more lives are touched by autism”) describes the experiences of Bev Frost, 64, who “has been fighting the system most of her son’s life,” and of Betsy Stevens, whose granddaughter has autism. I would rather say that, While raising an autistic child is not easy, for me the word autism, far from being “synonymous with lost hope,” is all about hope.
I give Charlie help he asks for. Charlie always give me hope.
And being here with you today, I hope even more.
And we wish to ask, what can we do to after we leave here, and tomorrow, and next week, and every day until we meet again to keep this hope, this advocacy and this witness, alive?
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POSTED IN: Autism Advocacy Conference, Classics, Disability Rights, Family, Movies, Parenting, Stereotypes
9 opinions for Advocacy. Witness. Hope.
Estee
Oct 28, 2006 at 8:09 am
Congratulations Kristina! I wish I could have attended this year’s conference. So much overlap with this and TAAProject. Thank you for this post and letting those of us who couldn’t make it, a little closer to it. I would love for you to write more summaries about the presentations. Perhaps I will do the same in my own blog when I can muster up some more energy.
Kristina Chew, PhD
Oct 28, 2006 at 5:23 pm
Thanks so much Estée—I look forward to reading your summaries. I picked up the brochure about TAAP that I think Phil Schwarz left—-I will be posting summaries, also slowly but eventually! It would have been great for you to have attended—-one woman I spoke to noted that “next time” it would be great to have an accompanying art exhibit and I thought immediately of yours.
Lisa
Oct 28, 2006 at 11:33 pm
Kristina,
I wish I could have been there as well–too much going on here and I’m still on overload from P.’s bar mitzvah and his performance in his school play. We’ve come a long way–from the days of agonizing tantrums and crippling anxiety to this sudden young man reciting Shakespeare in costume on a lighted stage. I love your remarks. Advocacy. Witness. Hope.
Yes.
Phil Schwarz
Oct 29, 2006 at 12:29 am
I much prefer the Hebrew word for witness, eid. It has the same etymological root as mo’eid, the word for gathering/festival/celebration. (Estee may not think she’s all that well versed in Hebrew, but she sure had the right idea, up there in Toronto :-).)
As for autism comedy: start with the simple forms of comic sense that seem to be shared among almost all the autistic people I know, and that flow directly from the set of larger shared autistic aesthetic sensibilities that I see in so many of us: affinity for patterns, repetition, and minor-variation-within-repetition. The comic sense that flows from this is a burlesque of these aesthetic sensibilities: breakage of patterns, interference between patterns, nonsensical juxtaposition of patterns, extension of patterns beyond sensible context.
Puns and wordplay are the examples of this comic sense that may be most accessible to the mainstream population.
Upon being introduced to Matt Lerner, director of the Boston-area drama-therapy program Spotlight, my son Jeremy said “wouldn’t it be funny if his name were ‘Matt Teacher’?”…
Breaching boundaries of literalness, or of theory-of-mind context, can be sources of mirth as well:
1. Once, when Jim Sinclair (who is intersexed, as well as autistic) said something particularly noteworthy and powerful, someone told him “you da Man” — to which he replied, without missing a beat: “No — I be da Neuter”.
2. My all-time favorite Mel Brooks sight gag probably goes relatively unnoticed by most people. It comes in “High Anxiety”, his great send-up of Alfred Hitchcock filmography. It isn’t even connected with any of the Hitchcock films he parodies though. It’s a short sequence in which the protagonists are driving down the LA freeway and one of them says a line with the words “high” and “anxiety” in it, and dramatic music wells up. But this dramatic music is not just audible to the audience: the protagonists hear it too. They look at each other, and then out the car window to the adjacent lane, where a big honking tour-bus with the logo LOS ANGELES PHILHARMONIC on its sides is passing them by, full of musicians inside playing /fortissimo/ the music we — and the protagonists — have been hearing…
Comic play-with-patterns can be non-verbal as well — visual, musical, spatial.
A true autistic comedy should be constructed from views of the world around us through lenses such as these. At least IMHO :-).
Autism Vox » The Silence of Two Hands Flapping
Oct 29, 2006 at 2:24 am
[…] In the previous post, One on One: Advocacy and Presence, I tried to provide a write-up of the content of the speakers in the first panel of the conference, Advocacy and Presence: Communities of Faith Engaging Autism; my first post about the conference, Advocacy. Witness. Hope was the actual speech I gave to close the conference. Both of these posts are very “text-y” and give you, I hope, a sense of the ideas that were presented at the conference. […]
Kristina Chew, PhD
Oct 29, 2006 at 1:37 pm
I believe that might be “das Neuter”……… or, again in Greek, to Neuter.
Breaking of the patterns: This is precisely what I have seen (witnessed) made Charlie laugh. Humor in Aristophanes’ comedies is often about the fantastic (Birds, even Clouds) and the typical/normal worked through to its logical craziness (again the Clouds, perhaps).
Witness in Latin is testes and I am still laughing about Matt TEACCH-er.
Autism Vox » Enough and Not Enough: Autism Research
Nov 21, 2006 at 1:21 pm
[…] You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site. Related Posts: NAAR’s Research “Partners”…Dear ProfessorWaldman, re: TV and autism…Dr. Stephen Walker on MMR: No link…Where is research money in the name of autism going?…This is a theory: Autism and ultrasound…On money, autism research, and autism education…Dr. Insel on “Autism: What do we know? What do we need?”… […]
Autism Vox
Nov 24, 2006 at 2:29 pm
[…] So says Kirsten Miller, who started to work with autistic children “by chance” ten years ago and whose new book, Children on the Bridge: A Story of Autism in South Africa” is described as combining “the mystery of the children, the gritty reality of their everyday life and her personal journey,” as reported in the November 24th Daily News of KwaZulu-Natal, South Africa. Miller notes that “this line of work of chose her”,” which is a sentiment I more than share in (see Advocacy. Witness. Hope). […]
Thinking Differently: Advocacy, Witness, Hope
Oct 29, 2007 at 12:50 am
[…] a panel on Catholic education and the spectrum; me offering some closing reflections on advocacy, witness, hope. If I may quote myself: Witnessing is not about bemoaning the life we wished we could have had, but […]
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