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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