No Pity, by Joseph Shapiro

No Pity is a difficult book to discuss or review briefly.  Joseph Shapiro, a journalist who has written extensively on the disability rights movement, gives us a sweeping look at the changes people with disabilities have experienced over the last several decades, both in terms of legal rights and the perceptions of others.  Although much has changed since No Pity was published in 1993, Shapiro captures the biggest changes of the 20th century, especially leading up to the passage of the Americans with Disabilities Act of 1990.

One of the major themes of the book, whether Shapiro is talking about people with blindness, deafness, paraplegia, or other disabilities, is disability as identity.  As the title implies, the disabled rights movement is a movement away from pity.  The poster children of telethons, the sad fund-raising appeals, the billboards of some charities, all send the message that a disability is something to be cured, to be overcome.  People with disabilities object to a message that they are less than whole, that they need fixing.  To them, their disability is what makes them who they are.

Feelings run quite strong with many.  Some object to efforts toward a cure.  For instance, "many deaf people abhor [cochlear implants] as suggesting that deafness is a pathology, something to be corrected or eliminated."  They view it as cultural murder, even genocide, of deaf culture.  Some disability rights activists are even critical of injury prevention research, saying that "to prevent disability is to suggest there is something pejorative about it."  Others object to very expensive technological means to assist in mobility, citing the low success rates in healing spinal cord injury and arguing that such expenditures should be used for the vast majority who can't be helped by advanced technology.

This perspective leaves me in a quandary.  Like Shapiro and the subjects of his book, I want people with disabilities to be involved in society, to work, and to have opportunities to engage others, disabled or not.  But is there not an objective sense in which to see is better than not to see?  To hear is better than not to hear?  To walk is better than not to be able to walk?  I don't mean to imply that one who can see, hear, or walk is better than one who can't.  But if I were to lose my sight or hearing, I would certainly like to regain it.  On a personal level, my daughter has an array of disabilities, including difficulty walking, inability to speak, etc.  I know, as many individuals with disabilities would agree, that her disabilities have made her who she is, and I do love who she is.  But wouldn't it be great if she could sing, talk to her friends, eat normal food, and run around and play like her peers do?  Shapiro quotes people who say something like, If you could wave a magic wand and take away my disability, I would refuse that, because this is who I am.  But if I could wave a magic wand and take away my daughter's disabilities, I would do it.  Again, don't get me wrong.  I don't love her less, or think she's less of a person.  I simply acknowledge that she has barriers in her life; if I could remove those barriers, I would.

As I mentioned, Shapiro covers the disability rights movement up to and including the passage of the Americans with Disabilities Act.  Many people who have grown up seeing curb cuts, wheelchair ramps, kneeling buses, and other accommodations don't realize the extent to which the ADA changed the way disabled people are treated and viewed in the U.S.  There's still room for improvement, to be sure, even 20 years after its passage, but the ADA has done much to improve life for people with disabilities.  I do have to admit the libertarian in me and the parent of a disabled child in me have argued about the application of the ADA.  One doesn't have to look far for seemingly silly applications of the law, and in many cases a conflict between property rights and disability rights comes into play.  Unlike the Civil Rights Act, to which ADA is compared, property owners seeking to fulfill ADA requirements  often must incur a material expense.  In some cases, it's quite small, but in plenty of cases the costs for a restaurant, retail store, or office can be substantial.  On this, the struggle between the rights of the disabled and the rights of property owners, I am torn.

I know a summary does not make for a good review, but in the case of No Pity, I thought it might be useful to briefly describe the chapters.  Shapiro's scope is expansive; the whole book is worth your time, but if you don't have time for the whole book, take a look at the chapters that interest you.

"From Charity to Independent Living": The story of Ed Roberts, a postpolio quadriplegic who enrolled at the University of California at Berkeley and whose activism opened doors for many other disabled individuals to attend college.  The parallels to the civil rights movement, including sit-ins and protests, are striking.

"The Deaf Celebration of Separate Culture": Deaf students' protesting the hiring of a hearing president of Gallaudet University led to greater awareness of and civil rights protection for disabled people.  For decades, only hearing teachers were hired to teach deaf students; sign language was discouraged.

"A Hidden Army for Civil Rights": Background on the passage of the ADA.

"Integration: Out of the Shadowland": The decline of institutionalization and segregated education for students with disabilities and increasing integration.  Economically, integration is much less expensive than separate schools.  More work to be done here, for sure. . . .

"People First": Self-advocacy and independence for people with intellectual disabilities.

"The Screaming Neon Wheelchair": The changing market for wheelchairs and other assistive technology.  People with disabilities are not "confined to a wheelchair."  They are liberated by their wheelchairs.  Other forms of assistive technology similarly liberate people with disabilities.

"Up from the Nursing Home": Tragically, some people with disabilities are stuck in nursing homes, where, at best, their needs are not adequately met, and, at worst, they are abused and neglected.

"No Less Worthy a Life": A difficult chapter.  How do you measure quality of life?  How do you determine whether an individual has the right to end his own life?  How can care-giving and life-improving technology help a disabled person feel that his life is valuable and worth living?

"Crossing the Luck Line": When people don't fit our labels and categories, they can be overlooked and end up in settings where they don't belong, missing opportunities to show their abilities.

The stories of the movements and individuals in No Pity will move you, inform you, and inspire you to look at the world through the eyes of people with disabilities.  Shapiro does not hold back from making the reader uncomfortable, yet fills each chapter with hope and optimism by showing how far we as a society have come.

Shortly after I finished reading No Pity, I saw an inspiring article in the Star-Telegram by Sean Pevsner, a disability rights lawyer with severe cerebral palsy.  His attitude exemplifies Shapiro's perspective: "Disabilities are not something that people should fight to overcome, but a part of what makes them who they are.  Our minds are the only things that limit us."

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Annie's Coming Out, by Rosemary Crossley and Anne McDonald

It's not often that a book makes me cry.  This book made me cry.

Several months ago I read William Horwood's unique and powerful novel Skallagrigg (read my review here), which follows a young girl's journey from an institution, where she had been placed by her family due to her cerebral palsy, to independence.  Mr. Horwood commented on my review, noting that one of the inspirations for Skallagrigg was Annie's Coming Out, the story of Anne McDonald's journey from isolation in an institution--and in her own body--to communication, interaction, and self-determination.

So what's so sad about that?  First of all, it's heartbreaking to read about the conditions under which Annie and her peers lived.  Institutionalized their entire lives, these children, who had cerebral palsy or other severe disabilities, were trapped in a sort of limbo.  The parents had placed the care of the children in the hands of the hospital.  The hospital had written the children off as little more than vegetables.  They suffered under the most horrible forms of abuse and neglect imaginable.  Annie was a teenager before Rosemary Crossley came to work at the hospital and began experimenting with different  means of communicating and began to build relationships with Annie and the other children.

In spite of the progress Crossley made with the children, using progressively more complex methods by which the children could spell out words and sentences, her superiors refused to acknowledge that the children could think and communicate on their own.  Eventually Annie began to assert herself and started a legal fight for her freedom from the hospital.  Eventually, to the chagrin of the hospital and government overseers, Annie won her freedom, setting a precedent for legal rights of the disabled.

Anne, pictured here with Crossley, died in 2010.

By improving her communication and bringing her case to the attention of the courts, Annie's case drew unwelcome attention to the hospital and its treatment of children.  Hospital officials began to retaliate by separating communicative children from one another and ramping up the neglect.  Annie lived in Australia, and the events of the book take place in the 1970s, but I am sure the attitudes and conditions described prevailed in the U.S. then, and, in spite of many improvements in care and therapy, are probably still around today.  Reading Annie's Coming Out will make you want to stand up for the civil rights of disabled, institutionalized people in your community.

The saddest portion of the book, the section that put me over the edge, was Annie's reaction to her friend Stephen's death.  As part of the hospital's retaliatory measures, Stephen was isolated from other patients and not allowed visitors.  He was given no means of communicating.  In his isolation and lack of hope, he died.  Annie writes: "Stephen's death was the end of my belief in God.  Previously I had wanted to believe in a caring God, who could love even people like us.  No one who loved Stephen could have let him die a prisoner of his own body and of the Health Commission."  I believe in a loving God, but I can scarcely blame Annie for her attitude, heartbreaking as it is.  My prayer is that others in her shoes will get a taste of the grace and hope God offers.

Out of My Mind, by Sharon Draper

A few weeks ago, Kelly wasn't feeling well so I took off work to fill in for her at the kids' Valentine's Day parties at school.  First I went to Chloe's second grade class.  Chloe is non-verbal and has some physical limitations and development delays due to an unidentified genetic disorder.  Prior to this year, she has been in special ed classes, with part of her day spent in regular ed classes.  Now she is in a regular ed class all day with a full-time assistant and is the only child in her class with special needs. 

As I sat and watched her interact with the other kids at her table, the other kids' interactions with her impressed me.  Without fail, they were sweet, helpful, friendly, and even conversational.  Chloe will nod in response, but does not speak, and does not make a lot of eye contact.  Yet these kids spoke and interacted with her as if nothing was different about her.  One of the little girls asked me if I was Chloe's daddy.  I told her I was.  She said, "Chloe and I are best friends!"  I'm telling you I almost lost it there; I had to exercise lots of self-restraint not to cry in front of her.  I loved seeing Chloe, who is content to play alone in her room for hours on end, in this setting, with such great support from her peers.

Then I went to help set up for Elliot's 6th grade party and was intercepted by one of his teachers.  Almost breathlessly, she said, "I read a book you have to read.  It's called Out of My Mind, and I thought of Chloe the whole time I was reading it!"  She had told Elliot the same thing, so he read it and told Kelly about it so she read it, and since they liked it so much, I picked it up yesterday.  I hardly put it down and finished it in a day.

Not only did I think of Chloe as I read, but I thought of Kelly, me, and Chloe's teachers and assistants.  In Out of My Mind, Melody, the 11-year-old protagonist, has cerebral palsy.  Though confined to a wheelchair and unable to speak, her mind is active, brilliant, and and capable of remembering anything she reads, sees, or hears.  Much of her school years have been spent in boring, humiliating special ed classes.  When she can read thousands of words, of course she gets upset when the teacher is teaching the alphabet.  Finally, through her own initiative and the persistence of her assistant and her family, she gets an assistive communication device, giving her a voice for the first time in her life.  Finally she can communicate verbally and participate more in school, even helping the school's quiz team qualify for the national finals.

Throughout the story, my heart broke for this precious girl, bringing me to tears on several occasions.  How frustrating not to be able to makes oneself understood.  How isolating not to be able to interact with people around you.  I, of course, kept thinking of Chloe, my smart little girl who has such a hard time communicating.  I don't know that she has a photographic memory like Melody, but I know she's always been smarter than we know.  What's going on in her mind that we can't see or hear?  How many inane, boring lessons has she sat through, thinking "I know all this!  Stop with the baby lessons!"  And when Chloe watches the other kids run and talk and laugh and play, does she long, like Melody, to be a part?  Does Chloe get embarrassed by her difficulty in feeding herself, that she wears diapers at age 9, that she rides the handicapped bus?

I thought of Kelly as much as I thought of Chloe.  Melody is a lucky girl in that her mom never gives up believing in her.  She has to come to bat for Melody time and again, sometimes in a militant way.  In the same way, Kelly has been Chloe's biggest advocate, her momma bear instincts pushing and pushing to make sure Chloe gets services she needs and is in the best placement for her growth.  And the link between Melody and her mom could just as well describe Chloe and Kelly.  Kelly knows what Chloe's every little gesture means, and usually knows what Chloe's thinking.  She can tell by looks if Chloe feels bad, and can smell when she's thirsty.  Weird.  Melody's dad plays a smaller role, like me; he's not as clued in to his daughter as the mom, but does all he can do to help.

Draper is a long-time teacher--honored as National Teacher of the Year in 1997--and the parent of a child with "developmental difficulties" (her description) so it's no surprise that her classroom scenes and dispatches from the special ed classroom seem so real.  And her appreciation for the special ed assistants should be noted; I agree with Draper--those folks do wonderful work for way too little money.  I for one am so thankful for the faithful ladies who have fed Chloe, changed her diapers, and invested in her learning and development during her school years.

Out of My Mind gives the reader a believable window into the mind of a disabled individual.  But Draper's real target audience is the rest of us.  As Draper says on amazon.com, Out of My Mind is "written for people who look away, who pretend they don't see, or who don't know what to say when they encounter someone who faces life with obvious differences. Just smile and say hello!"  I may be too honest in this admission, but this book has reminded me to take more time with Chloe, to remember that even when she acts like she's in her own world she is hearing and seeing and taking it all in, and that it's up to me, Kelly, and all of Chloe's support team, to work together to help Chloe take part in her world and to overcome the challenges in her life.