Tag Archives: Disability Studies

“Both Sides of the Table”

I’m reading a really wonderful book right now.  Both Sides of the Table Autoethnographies of Educators Learning and Teaching With [Dis]ability Edited by Phil Smith.  My friend Ib wrote a chapter for this fabulous book.  Her chapter is called, Autistethnography.  In her chapter she writes about the mesmerizing beauty of a dodecahedron and provides the following link – http://beachpackagingdesign.typepad.com/photos/uncategorized/2008/04/30/dodecahedron.jpg .   Ibby writes, “…. if you memorize it well enough to be able to spin it around in your head while changing its colors, enable you to loiter for ages with the greatest of ease, astonishing onlookers with your ability to do what they mistakenly believe is nothing whatsoever.

Oh how I love that and if you’re like me, you will read that sentence many times, considering its implications and its layered meaning.  That sentence, if a sentence could be a dodecahedron, then it certainly is.  I have spent the last five minutes carefully spinning those words around in my head while staring out the window of my studio at the snarled traffic creeping along the 59th Street bridge.  What a wonderful sentence.  What a wonderful way to think about something.  And it is so perfectly Ibby-ish in all it’s spectacular-ness.  My daughter understood this instantly after meeting Ibby for the first time and began to refer to her cheerfully as, “Ibby from Ibbia!”  Do not mistake this as a demonstration of othering; it most certainly is not.  In fact, it is the opposite.  That she understood so instantly and on a whole other level is something I envy.

Both Sides of the Table isn’t an autism only book.  It’s a book about identity, relationships, society, politics, research and self-discovery.  It’s about the stories we create so we might learn about and from one another and how we affect each other through our experiences of the world.  Don’t be put off by the title.  Autoethnography is really another word for memoir, but the best kind of memoir.  Memoir as a tool for investigation and a search for larger meaning.  To me, anyway, those are always the very best memoirs, the ones where we not only identify, but where we learn something about the other person and in so doing, ourselves.

So I’ve been thinking a great deal about stories.  Stories as research, stories of lives that overlap and how we affect one another.  Deodatta Shenai Khatkhate left a great comment on yesterday’s post, he wrote, “There is a thought process that we ought to use our Words with caution, for they become our Actions; then our Actions become our Habits; and our Habits become our Character; and ultimately our Character becomes our Destiny. Thus the creator of one’s Words is always the master of one’s Destiny.”  He attributed this idea to Ghandi and Margaret Thatcher;  I’ve also read something similar from Lao Tse.  In any case, it is wonderful and reminded me of this idea of autoethnography.  The layering of experience, meaning, the overlap and the way we are intertwined with each other’s lives as they unfold, affecting change, shifting research, becoming research, becoming change.

Dodecahedrons

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I Got To Meet A Unicorn Named Ibby

Celebrities and important people populate New York City in the same way Starbucks does, in other words, look hard enough and you’ll find one on every street corner.  But Sunday I had an encounter that was more impressive than running into a dozen A list celebs.  Sunday I met Ibby Grace.

Ibby, also known by her professional name, Dr. Elizabeth J. Grace,  Assistant Professor at National Louis University, is a terrific public speaker, wonderfully sarcastic, understands irony and rhetoric, has a sense of humor and is an extremely kind and compassionate human being, in a long standing relationship, a new mom to twins, and is Autistic.   If you believe the common assumptions about Autistics, Ibby is an anomaly.  According to the current “statistics” citing 1 in 4 Autistics diagnosed are girls, Ibby is even more unusual.  That she also displays qualities thought to be nonexistent in all Autists makes her, as she suggested with a certain degree of sarcasm, “a unicorn” or as a participant volunteered, “pegasus.”

Ibby spoke Sunday at the 12th Annual International Conference on Disability Studies in Education on Autistic and Female:  They say that’s rare, and so many other things.  She proceeded to dispel the many myths surrounding the little known and misunderstood segment of the human population – The Autistic Female.  In her talk she mentioned various theories including Simon Baron-Cohen, the creator of possibly the single most destructive theories regarding autism, The Theory of Mind and Mindblindness, which postulates that Autists are unable to empathize and his latest theory – The Extreme Male Brain.  I will not do Ibby’s talk justice by trying to represent it here.  Suffice it to say, you should have been there.

After the talk I stayed and chatted with a number of people.  As  Ibby and I walked together I told her how thrilled I was to meet her and other Autistic women who were beating a path, a path my own daughter may choose to one day walk down.  “You’ve found her people,” Ibby laughed.  I have and a formidable group of women it is.  Then she put her hand out and said, “Welcome to the tribe.”  The gloom and doom and horror I have grown used to feeling whenever I have attended any group discussion regarding anything to do with autism was in stark contrast to the joy I felt attending Ibby’s talk.  I think I may even try to go to other Autism conferences as long as most of the speakers are Autistic.

Ibby makes me happy.  She is interesting, smart, articulate, funny, doing what she loves and is one of those people who lights up the room.  It’s just the way she is.  Were it not for deeply ingrained societal restraints I would have physically jumped up and down upon meeting her I was so excited.  I think I did bounce a little on my toes when I went up to her after the talk had ended.

But I don’t think anyone noticed.

*An addendum to Sleepovers, Staycations, Sixteen Hours and Other Words Beginning With the Letter S – it turns out Oliver and Trouble are the names of Angelica and Joe’s two cats.  Mystery solved!  I should never question Emma.  She is always right.  I have to learn how to listen to what she’s saying better.

My latest piece My Fear Toolkit published in the Huffington Post

Frustration, Self Injurious Behavior & Autism

To all who reached out yesterday – Thank you.  The feeling of  being overwhelmed that I was experiencing, receded and by the afternoon I was feeling back to my old energetic self.  Amazing how something so simple as admitting out loud how you’re feeling can elicit such an outpouring of support which in turn can transform all those feelings into something positive.  It made me think about how we – those of us who are caregivers and autistics should have a place where we could go to get support, ask questions, a place where we could come together as a community and just be, with no leaders or hierarchy, just a place anyone who wanted or needed could gather and reach out to like minded people.   If such a place exists, please let me know.

Hunter College, here in New York City, is hosting the 12th Annual International Conference in Disability Studies in Education, May 25th – 27th and I will be attending one of the presentations – Autistic and Female:  They say That’s Rare, and so many other things – with Elizabeth J. Grace.  I am very excited!

The program looks fascinating and if I could, I would have liked to have attended the entire conference.  Who knows, perhaps next year I will be able to.

On a separate note, Emma became frustrated yesterday while at school and bit herself.  This has been an ongoing issue, one that began when she was at her special-ed ABA based preschool when she was just three.  A boy bit her, on three different occasions, causing the skin to break and each time this happened we would get a call from the school telling us that this same child had bitten her, that they were doing everything they could to monitor him, but that while it obviously hurt her, no real harm had been done.  Not long after that, Emma began biting herself.

It is horrifying to witness your small child, in such obvious pain, attempting to manage their upset by harming themselves.  Emma bites her arm or hand or in extreme cases will punch herself hard in the face.  We have used a variety of techniques hoping to stop the behavior, but so far none have worked, though she does not bite herself as much as she once did and rarely punches herself in the face any more.

A few weeks ago I reached out to a couple of Autists I know asking for their suggestions and one had some great ideas about things that might help, such as chewy tubes, which we have bags of and had all but forgotten, and having a favorite stuffed animal with her. I decided to ask Emma whether she would like to have a stuffed animal to take with her to school, and while she declined, she did say she wanted to have two chewy tubes in her backpack.  We discussed how when she becomes frustrated she can chew on the chewy tube and Emma nodded and shouted, “I’m so frustrated!” then grabbed the chewy tube I was holding and jammed it into her mouth, gnawing at it furiously.  I took her response as a positive sign.

I don’t know if anyone at her school remembered to remind her about her chewy tubes or if in the heat of the moment they were forgotten, but we will continue to remind Emma that the chewy tubes are with her and she can bite them instead of herself.

Telling her, “We do not bite!”  or “You may not hurt yourself!” while well meaning and said with good intentions has NOT proven remotely helpful.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.