In Judy Endow’s book, Paper Words, she describes the process she went through to communicate. She writes about the “bridge pieces” or information storage system she experienced, “Then world-people might see the little bridge pieces stuck onto the sides of all these stone islands.
“Bridge pieces just hanging there serving no purpose (other than to underline the fact that a bridge was meant to be there, but isn’t) little bridge pieces going nowhere with gray -matter g a p s where the bridges should be.
“Perhaps then the world-people might come to understand that even though she may know all the info that’s needed to answer their question or to produce a reciprocal response to keep up with her part of their conversation, sometimes it takes a lot of her time to jump in a boat and float around in that gray-matter space of her mind floating in the g a p s trying to find all the right islands of stone that might hold any relevant data pertinent to the subject at hand.
“Sometimes it’s a cumbersome task to access information in this manner and at other times it is downright impossible.”
Judy’s book is incredible on so many levels and I hope she will forgive me for butchering the placement of her words, because my blog would not allow me to replicate what she does in her book. However, I will try to explain. She literally breaks the sentences apart in meaningful ways. There are the words she’s writing, but there is another layer of meaning to be gleaned from her words, and that is how and where she places the words on the page. As an example of the above quote, these words are placed in such a way as to create islands of words, separate from each other and yet the meaning overlaps, but the placement of the words (the islands) do not. This requires the reader to visually leap from one island of words to the next, just as she describes her thought process must do. It is a wild experience to read in this way and further illustrates her struggles with “bridge pieces” (information storage), “gaps” (information processing), and canoe transportation (information retrieval).
In her chapter entitled,”People Are Not Interchangeable” Judy Endow writes, “…meaning that if PERSON ONE has a conversation with her today …then tomorrow she can’t speak her response to PERSON TWO even if both persons belong to the very same group sometimes when she knows what she’s talking about and the person to whom she is speaking acts like he doesn’t understand her the first thing she does is to repeat herself saying her exact words over but if the person still acts confused she begins to wonder… this may be one of those times when she needs to be talking to PERSON ONE but because both of them are in the same group it somehow makes perfect sense to her to be talking to PERSON TWO but this kind of mistake rarely works out so she must always remember the rule that she made for herself: “People are NOT interchangeable.”
Again I couldn’t duplicate the arrangement of these words on this blog, an arrangement that serves to visually recreate the issues she describes having.
As I read Judy’s powerful book it was impossible not to reflect on my daughter. How often has she said something that I did not/ could not understand? How many times has she spoken to me about something or someone who I didn’t understand the context of, but that she seemed to know and understood me to know as well. Only I did not. How many times did I think – what am I missing? And now I wonder, was she speaking to me, assuming I was PERSON TWO, while PERSON ONE might well have known exactly what she was referring to? How many times have I been PERSON ONE and then explained to PERSON TWO what I thought was meant?
It happens often.
Emma doing one of her favorite “finger mazes” – 2013
Thanks Ariane Zurcher for the blog on my book Paper Words: Discovering and Living With My Autism!
Not many people understand the explanations of my neurology and the positive implications that might have in so many areas that are throughout this book, but instead assume it is only a story of my life.
So glad to know another person is understanding more than the story!
Oh Judy, I’m relieved to know you approve of this post! I think your book is incredible and the word placement, that added layer, forcing the reader to do at least some of the work you describe having to do, is brilliant. There are chapters I have read several times and with each reading feel I a deeper level of understanding and appreciating your words. Can’t wait to finish reading your latest book!
Fascinating. Thank you Judy and Ariane. I will order paper words today and plan read it with my friend Barb ASAP. Wishing you both much success and happiness, Lois
Hi Lois! Hi Barb! Just faxed you everything….
I would love to know what you and Barb think about Paper Words.
Thank you…in the next day or so I will post about my daughter’s language (it is in draft and with my editor, ie hubby!). Your post above is very interesting to me…I will be reading that book.
I hope you find it as fascinating and helpful as I have. It’s like no other book I’ve read!
Oh! I want to read this book! Thank you for telling us about it — I had not heard of it before.
Judy Endow has written quite a few books, actually. She is also an artist, painter and sculptor. She did a series of clay objects called Brown Paper Bag Series, that I just love! You can see her art work on her site: http://www.judyendow.com/Art.html
My husband and I are neuro-typical and sometimes I think I’m speaking a different language to him. He has no idea what I’m talking about. This piece has really made me think about how we communicate in our house. I think I need to get Judy’s book.
LOL! I think that happens a lot with marriage!
Sounds like an amazing book. I wish i knew what it was like to have Autism just so I could understand people who have Autism better but i know that will never happen just like i know that people who don’t have Cerebral Palsy will never understand what it’s like to have Cerebral Palsy.
Which is why it’s so good that you’re talking about it Nisha!
True writing about my life with CP has done me a world of good and I’d like think I’ve educated a few people in the process.
I am currently reading “Exiting Nirvana” and it is excellent. Paper Words will come next. I recommended Paper Words to a friend who has two sons with autism and she said it is excellent. Thanks again for this article!
I loved both her books. They were the first really great memoirs I ever read and at the time the first was considered pretty radical during a time when institutionalization was thought to be a good solution.