I Raise My Eyes To Say Yes: A Memoir [a book review]

For the past several years, I have tried to do something special (continuing ed-ish) in April/May for Autism Awareness Month / Better Hearing & Speech Month.  Last year, I finally watched The King's Speech (yes, yes; I’ve already taken enough flak.  All I can say is: wow!)  A few years ago, I watched the Temple Grandin movie.  One year, I had the pleasure of seeing Temple Grandin speak in person.  Usually I read a book.  Past titles include: The Diving Bell and the Butterfly: A Memoir of Life in Death, Schuyler’s Monster: A Father’s Journey with His Wordless Daughter, and Songs of the Gorilla Nation: My Journey Through Autism.

This year, I decided to read a title that happened to pop up in my Facebook newsfeed (affiliate link): I Raise My Eyes To Say Yes: A Memoir by Ruth Sienkiewicz-Mercer and Steven B. Kaplan.  [Discolsure: I purchased the book, and was later motivated to write this post; I received nothing in return.  The opinions are my own.]  Ruth was born in 1950 - a healthy baby girl.  Five weeks later, she fell gravely ill resulting in severe damage to her central nervous system and a diagnosis of cerebral palsy.  She was quadriplegic; never spoke a word, never fed or bathed or dressed herself, and had little formal education.  But she had normal cognitive ability (intelligence).  Ruth’s family was not able to care for her at home and so made the tough decision to send her to live in residential facilities.  This book is her life story, told through a series of anecdotes and written in collaboration with Steven Kaplan.  While I have been touched by every book (or movie or activity), I had a most unexpected and visceral response to this book.  

The Ugly 
Sadly, much of Ruth's life was filled with ugliness.  Because she had little physical control of her body and could not speak, most people she encountered assumed she was an ‘imbecile’ (which was an actual diagnostic term once used to describe a level of cognitive deficiency) – and treated her as such.  Many of the professionals and caregivers throughout her 48 years of life took a quick look at her and assumed.  Assumed she did not understand anything.  Assumed she had nothing to say or contribute.  Assumed the worst.  At best, these quick judgments and ensuing assumptions meant a frustrating, limited and unfulfilling life.  At worst, it meant physical, mental and emotional harm.  I was frequently appalled and infuriated by how some people treated her, without a second thought.  It seemed as though many of the people that passed through Ruth’s life did not think of her as a fellow human being.  

 If I were granted one wish and one wish only, I would not hesitate for an instant to request that I be able to talk, if only for one day, or even one hour.

The Bad
Ruth had average intellect.  Imagine that tomorrow you are struck by some illness or traumatic event that leaves you unable to speak and trapped in a body you are no longer able to move or control.  After treating your illness/injury, the doctors give you a once over and determine that your brain suffered such extensive injury that you are no longer competent.  And so no one makes an effort to find alternative ways for you to communicate.  And no one takes the time to find out your wishes.  You are cared for on a “schedule” but not necessarily according to your needs.  But the doctors were wrong.  Your mind is as sharp as it was before this tragedy befell you.  And you only have your eyes, a few facial expressions, and some grunts/vocalizations to try to convince those around you that you are still “there”.  Ruth did not have the advantage of a meaningful education, and was negatively impacted by that.  But it had nothing to do with her not being mentally capable.  She certainly did not have “book smarts”, but man did she have her own brand of “street smarts”.  The most unfortunate part for me was that Ruth’s family (who knew her abilities) did not listen to her wishes – and in fact turned a blind-eye.  They felt they had no other options, so it did not matter that she was miserable, underestimated, and often mistreated.  Even after they realized it was more than just ‘not liking it’ that made Ruth want out.  Heartbreaking.

At that instant Theresa figured out what none of the staff would decipher for several years: that I raise my eyes to say yes. ... After countless hours of careful study, we were able to fashion a basic, yet effective, system of communication.

The Good  
Use of AAC (augmentative-alternative communication) began in the 1950s, but only really with adults who had lost the ability to speak following surgical procedures.  The 1960s and 1970s focused on the movement toward mainstream inclusion for individuals with disabilities and finding ways for them to be as independent as possible.  It was not until the 1980s that AAC took off as a field in its own right.  Ruth was in her 30s by that point.  

Ruth's perseverance is inspiring.  If you have ever tried to use any AAC system to communicate, really communicate your thoughts and feelings, you know it is hard work.  And I have no physical or mental/cognitive impairments to contend with in the process.  That she only had her eyes, facial expressions, and a few vocalizations to convince people she had something to say and to then say it - amazing.  To realize the range of communication partners (not always who you would expect) she had throughout her life was eye-opening.  Ruth clearly had her moments of negativity, anger, and frustration; and rightfully so.  But she maintained a wonderfully hopeful outlook and tried to see the good in people.

I am reminded of the Fred Rogers’ quote, "When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’"  Ruth’s life was punctuated by helpers; truly caring and observant people who took the time to learn that there was so much more to Ruth than they had been told (or first assumed).  They questioned.  They challenged.  They gave her a chance.  Those people and moments were always life changing for her.  Have you ever encountered an individual with severe physical disabilities?  Or someone with significant communication challenges?  What was your immediate assumption about them?  I think for most of us it is a natural reaction to assume incompetence.  How many of us take it one step further and challenge ourselves to question that assumption?  To dig deeper, to see what is beyond first appearances?

My take-away from this book: presume competence.  Presume competence.  Be a ‘helper’.  Be open to the possibilities.  Aim high.  So many of the stories Ruth relates in this book painfully, and poignantly, illustrate the harm done when one presumes incompetence.  Sometimes that harm is physical, sometimes mental, sometimes emotional.  But it is always tearing down the person.  We should be building up, not tearing down.  Always.  With every human being we encounter.