Thursday, May 08, 2014

The Reason I Jump, Naoki Higashida

For the first 20 years of my teaching career, I taught self-contained special education.  I chose special education as a career for two reasons.  The first was the book A Circle of Children, by Mary McCracken.  It is a memoir of McCracken's time teaching in a school for children with severe social/emotional disabilities. The second reason was my experiences volunteering at a day camp for children with special needs in the south suburbs of Chicago as a teen.  Not only was I fascinated by the puzzle that these children presented to educators, I was deeply moved watching them grow from year to year, and I knew that I wanted to be a part of that process.

During those years, I met and worked with many, many children.  Quite a few were diagnosed with autism, both the more stereotypical "hand-flapping, spinning-objects" kind, and the varied forms that we have come to recognize today as part of a spectrum of symptoms.  Some of the children were non-verbal, some of them talked non-stop, though usually only about whatever obsession they were currently stuck in.  I learned all about the difference between asphalt and concrete from Keeler, and more about Uh Gi Oh than I would ever need to know from Nick.  Kameron mostly just repeated what other people said to him (called echolalia), but when he did verbalize his own thoughts they almost always had to do with basketball.  I knew children with autism who didn't like to be touched at all, and some who wanted nothing more than deep pressure all the time.  I knew children with autism who never demonstrated self-stimulation, and some who would bounce on their toes or flap their hands non-stop without intervention.  And no matter which child I was currently working with, I always, always wondered what they were thinking about.  Were they content to be left alone?  What made them suddenly take off running?  Why did they insist on wearing the same clothes, day in and day out, regardless of the weather?  Why could they echo whatever was said to them, but not tell us their own thoughts and dreams.

We know so much more about autism than we ever have before.  We know that the issues people with autism have with touch and sound and light has to do with differences in their sensory integration.  We know that people with autism can exhibit different behaviors based on where they fall on the spectrum, and that some disorders that we called something else previously are in fact related to autism spectrum disorder.  But there are also still lots of mysteries.  No one knows the cause of autism (but we know it is NOT childhood vaccines, in case you've heard that in the media).  No one is entirely sure why the repetitive and obsessive behaviors exhibited by many people with autism are so comforting to them, nor do we know why not every person with autism has these behaviors.  But we may now have a better idea about what people with autism may be thinking about, thanks for a remarkable 13 year old Japanese boy.  Naoki Higashida shares his thoughts and experiences as a person with autism, and takes some guesses about how things may be with others who have autism, in his bookThe Reasons I Jump.  He gives us insight into the internal life of people with autism in a way that I have never seen before.

 There are many noteworthy things about this book.  It has an interesting format, in that Higashida starts each section with a question that neurotypical may ask about autism (and probably have asked), and then proceeds to answer the questions according to his own experience.  The book is also interspersed with short stories that demonstrate some aspect  of Higishida's inner life.  But the thing that makes this book truly amazing is the fact that Higishida is non-verbal. He can speak, but the process is so difficult for him that he uses a communication grid he devised himself, or a computer, to write what he wants to say.  Without those adaptions, he would most certainly be trapped inside his own head, unable to communicate at all.  No one would ever have had access to his insight into living with autism, and that would be a tragedy.


Essentially, his message is one that I think probably resonates with anyone who has a physical or mental illness.  Have compassion, have patience, and have understanding, because people with autism or other disabilities don't have control over that disability.  He acknowledges over and over that he knows it can be taxing and frustrating to take care of people with autism.  He knows that having to say the same things over and over again, only to have the person with autism forget what they were told is difficult.  He knows that it worries his parents when he suddenly runs away from them, or when he doesn't notice the world around him and its many possible dangers.  But he tries, and he wants to be recognized as a person with needs, a person who does not always live up to his own expectations for himself, but who is honestly, truly trying to understand how to live in a neurotypical world.    He also reveals a deep sense of self-awareness and insight that I think many people working with people on the autism spectrum would find unbelievable.  Some people living with autism are so distant emotionally and cognitively from the world us neurotypicals live in that it is hard to believe that are thinking about much of anything at all.  How many times have I heard the words, "He's in his own world" used to describe someone with autism?  I've thought it myself often enough over the years.  And for some people with autism it may be true that their experience of the world are so different than mine that it really is like another world, but I suspect more often people with autism are looking for the same things all of us are-safety, comfort, and meaningful human connection.


Wednesday, May 07, 2014

The Most Terrifying Book I've Read All Year...

...is about a corporation.  That's right-not zombies or vampire or werewolves or serial killers.  The most frightening book I've read all year-in fact, in the last several years-is about a technology company.  Now, plenty of people are scared of technology, in the "I don't know how to work this" sort of way, but this fear goes right to the heart of so much of what is happening in our world right now regarding internet safety, social media, and privacy.  This particular nightmare is brought to us by Dave Eggers in his 2013 book, The Circle.

The titular Circle is the largest and most powerful corporation in the world.  Calling it a technology company
is a little like describing the Louvre as a building with some paintings on the walls.  The Circle has their fingers in everything.  Imagine if Mark Zuckerburg suddenly owned not just Facebook, but also Instagram, Ebay, Amazon, Twitter, and Google.  The Circle has access to every post, comment, like and dislike (which they call smiles and frowns), customer review, photograph, document, and piece of electronically collected health information in the world.  They also control most of the country's surveillance feeds, with an eye to attaining the information from every country in the world.  They built this empire one piece at a time, adding features and combining services with the aim of making things more safe, efficient and convenient-at least, that's their stated aim.  Their goal is something they call "completion"-that moment when every person on the planet is connected with every other person on the planet, and everyone on the planet knows what every other person in the planet is doing and thinking, all in real time.  (Scared yet?)

The main character is Mae Holland, a young woman in her 20s who at the start of the novel is working at the utility company of hometown.  Feeling discouraged, like her life essentially has no meaning, she is thrilled to be recruited by The Circle. After all, with their beautiful corporate campus, gobs of cash, and prestige, who wouldn't want to work for them.  She goes to work in their customer service department, and quickly begins working her way up through the ranks of the company.  Her friend Annie-a very important executive at The Circle-gives her a leg up whenever she can.  As she takes on more responsibilities, she is given more and more "screens".  She is expected to communicate with customers, answer/comment on people's posts and comments on The Circle's social media platforms (the Inner Circle and Outer Circle), answer endless survey questions designed to gauge consumer habits, and attend on-campus social events, all with the goal of increasing her participation rank, so that she can be given more responsibilities and more screens.  (How 'bout now?  Scared now?)

At one event, she meets a mysterious stranger named Kalder, who says he works for the company, but she can't find him in the staff directory, nor does she ever see him working on any projects.  She feels very drawn to him, but there is something about him that she senses just isn't right?  Is he a corporate spy?  Will she get in trouble for being seen with him?  Her life becomes less about her, and more about they ways in which she can help the company attain "completion".  When strange things start to happen to her friends, she is troubled, but is always able to push away her doubts-usually by what I would call hypnotizing herself by spending hours on social media, "smiling" and "frowning" and "zinging" (their equivalent to tweeting).

Essentially, what makes this book terrifying is the fact that it is not at all implausible.  This may technically be science fiction, in that the technologies that make The Circle's complete domination of every aspect of life have not all been developed yet, but they are all technologies that could exist.  It would not surprise me if there are companies around the world experimenting with some of the very same concepts that The Circle has perfected in this book.  And the arguments that The Circle used to infiltrate the private lives of every person, regardless of whether they use The Circle's social media or not, are ones that I can see swaying Americans now-in fact, they are arguments that do sway people now, arguments about curtailing civil liberties to "keep us safe" or to "expand human knowledge".

The most frightening part for me was the complete erosion of the separation of private and public spaces.  The masterminds behind The Circle were able to convince the world that everyone has the right to ALL knowledge-even things that people would traditionally keep private.  So not only can The Circle access the feeds from cameras placed all over the world, but so can everyone else.  In true Brave New World fashion, they come up with some slogans for what they believe, the most pertinent one for this conversation being Privacy Equals Theft.  People begin to feel that they have the right to know what everyone is thinking all of the time, because according to The Circle Secrets Equal Lies.  It creates a society where everyone is constantly reaching out to everyone else, but no real connections are made.  Personal communication and private relationships are replaced by smiles and frowns and comments on a newsfeed.  And what does The Circle get for all of this knowledge?  A way to monetize everything, a way to keep tabs on what people buy, who they spend time with, where they go...I sincerely hope that we NEVER end up living in the world of The Circle.

Friday, May 02, 2014

A Visit from the Goon Squad

Jennifer Egan's book A Visit from the Goon Squad was all over must-read lists last year.  I am usually so behind in my never-ending quest Someday!"
to get through my to-read list (this will never actually happen, but hope springs eternal) that I'm just getting around to the Best of  Two Thousand Whatever two (or three or five or eight) years later.  Thank goodness for book clubs!  Without the lovely ladies of the Unitarian Universalist book club, I would probably still be looking wistfully at the cover of this book every time I went by my bookcase, thinking "

A Visit from the Goon Squad uses the music business as a metaphor for modern society, telling stories of loss, betrayal, love, and family through a series of vignettes from the perspective of different characters. They are all connected in some way to each other, and to the music industry in Los Angeles.   The novel goes back and forth through time, jumping from decade to decade, highlighting all of the modern pressures that people feel to fit in, be connected, create meaning in life.

Not only is the non-linear structure of the narrative unique, but each vignette has a distinct personality, a different way of storytelling from the others.  Time and again, the characters show that despite all striving to the contrary, most of them (us) are never able to live up to the image of themselves that they have created in their own minds.  Often, the things that the characters do to try and make-up for their previous shortcomings make things worse instead of better, and there are plenty of unintended consequences throughout the book. Egan spends most of the book demonstrating how difficult it can be to have truly authentic relationships in the modern world in which we live, where it is theoretically possible to stay connected with everyone all the time through social media, but where in reality most people are living shallow public lives, keeping most of their deepest selves hidden.

The last part of the book describes a future New York where infants and toddlers drive consumer tendencies through the use of social media, and where trends are determined artificially through people whose job it is to promote brands they may have no real experience with or knowledge of.  This topic, the false reality of social media and the lack of privacy in the digital age, is reflected in others books gaining popularity recently, most notably Dave Egger's The Circle (review coming soon!).  I hesitate to say that what it means to be human is changing so drastically that humanity itself may be high unrecognizable in the next 50 years, but I do hope that gifted writers such as Egan continue to raise questions about how our relationships to each other and to the world in general will change when all of human knowledge is available with a few keystrokes, and whether the seemingly endless ways we now have to connect with other people really deepens our connections to each other and our own best selves.