The Story of Beautiful Girl, by Rachel Simon

One of the great roles of fiction is the opportunity to see the world through someone else's eyes.  In the story of Beautiful Girl, Rachel Simon gives a voice to some who are literally voiceless and tells the stories of people whose stories are never told.

This novel, which spans several decades, opens with Lynnie, or Beautiful Girl, and her friend #42 arriving one rainy night at the home of Martha, an elderly widow whose reclusive life is mostly taken up by corresponding with her far-flung former students.  The rain-soaked couple have a newborn baby with them, wrapped in blankets. Number 42 is deaf and mute; Lynnie does not speak either, and seems to have an intellectual disability.  Martha realizes that Lynnie has just given birth to the baby, but is able to learn nothing more about them.  As quickly as they appeared they disappear, Lynnie taken away by officials from the institution from which they had briefly escaped, and #42 disappearing into the night.  But the baby had been hidden. Her existence was completely unknown to the school. So Martha raised her, keeping her identity a secret.

The rest of the story follows three strands: of Martha and the baby as they move about, evading those who would link her back to the school; Lynnie, as she returns to the school and her life after the school; and as #42, Homan, tries to get by in a world where he cannot hear or speak.  It's pretty melodramatic and contrived at times, but Simon draws the reader into the characters' worlds, making you care about them and the course of their lives.  Martha's heroic choices, Homan's steadfast determination, and Lynnie's unfailing hope will inspire you.

Simon tells the story against the background of the experiences of people with disabilities in the second half of the twentieth century.  The "school" where Lynnie lives much of her life, the State School for the Incurable and Feebleminded (the name sounds silly to us now, but is typical of institutions founded in the 19th and early 20th centuries), is fictional, but is based on schools Simon has researched and seen first-hand.  (Her sister has an intellectual disability.)  Lynnie witnesses and suffers from unspeakable abuses by school staff, an expose by local and national media, subsequent reforms, and the eventual closing of the school.  When the school closes, she deals with living in a group home, finding work and getting around in daily life, and becoming a self-advocate, attending conferences and testifying before lawmakers.

In Homan's story, Simon gives us a view to the life of an uneducated deaf man, who spent much of his life totally unable to communicate with most people.  He had learned a dialect of sign as a boy, but it was years before he began to learn ASL and speak with other deaf people.  Homan's character was inspired by the true story of a deaf boy who was arrested and dumped in an institution simply because officials didn't know what else to do with him.  His story is told in God Knows His Name: The True Story of John Doe No. 24, which I haven't read, but will add it to my list!

Simon doesn't preach or shake her fist at the treatment of people disabilities.  The Story of Beautiful Girl is, first of all, a story, but there is no question that Simon has a bit of an agenda here.  She educates about the history of disability services, she gives the reader insight into the world of people with disabilities, and she helps the reader understand the perspective of people with disabilities.

I was particularly interested in Simon's treatment of religion.  Lynnie has dim memories of her family's Jewish heritage; at one point we learn that her family was shunned from the synagogue because of Lynnie's disability.  After #42's impromptu funeral, Martha "could not help but wonder how there could be a God if people treated this man as they had, and Lynnie was forced to live in a place like the School--and this child could be doomed to a life of desolation."  One of my favorite characters was Kate, who worked at the school and became a friend and advocate for Lynnie.  She "found her work an act of penance," a way to live out Jesus' admonition to "Love one another. As I have loved you, so you must love one another."  She also remembered Jesus words in Matthew, "Whatever you did for one of the least of these brothers of mine, you did for me."  In her own family, "she taught her children that every person. . . deserved kindness."

Lynnie had some reflections of her own at her friend Doreen's funeral.  When the minister "moved on to talk about her finding eternal happiness now that she was home with the Lord, Lynnie stopped listening.  Doreen had never said a word about God, and Lynnie was far from certain she believed in God herself.  People who did talk about God, like Kate, said they felt His presence deep in their heart.  In Lynnie's heart, she felt nothing.  If there was a God, why did Doreen have to die to go home?  If there was a God, why did Doreen's father give her money but never visit?  If there was a God, why could Lynnie barely see Buddy and Julia in her mind? . . .  If there was a God, [Doreen's] parents would have come--eventually.  But never had come first."

Besides telling a great story, Simon gives us a lot to think about in our own relationships with people with disabilities.  Whatever someone's ability or disability, everyone has hopes and dreams and longs for friendship.  Everyone has a story to tell.  When we encounter someone with a disability, let's wonder, with Kate, "How many others are out there?  How many other lives are hidden, and hearts are seeking?"


 

Raymond's Room, by Dale Dileo

When activists in the 1960s exposed the horrific conditions of Willowbrook, a New York institution for people with disabilities, progress began to be made on the reform of such conditions.  As he describes in his book Raymond's Room: Ending the Segregation of People with Disabilities, when Dale Dileo started working with people with disabilities in the mid-1970s, he discovered that in spite of a greater awareness by the public, high-profile politicians calling for change, and the publication of books and broadcasts of television shows about conditions in institutions, the conditions still were poor at best, and, in some cases, horrifying.  Dileo gradually came to take the position of Gunnar Dybwad, who wrote that "Four decades of work to improve the living condition of children with disabilities has taught us one major lesson--there is no such thing as a good institution."

While still a college student, Dileo got a first-hand glimpse of one small way institutions dehumanize people with disabilities.  At the residential school for children with autism he was shown that, among the many indignities, one staff member brushed all the residents' teeth--with the same toothbrush!  Then he met Raymond, who, on a nightly basis was locked in a small room which was stifling in the summer, freezing in the winter, and that reeked, due to the use of a portable toilet in the room.  The staff would lock the door from the outside, leaving him there all night.  As a young staff member, Dileo was shocked, but never did anything to change this policy.  As his views changed over the years, he came to reject the whole philosophy of institutionalization, and worked to get the Raymonds of the world out of institutions altogether.

People with disabilities have long been isolated and segregated, primarily by institutionalization, which almost inevitably leads to horrible conditions, as well as, at the very least, "needlessly limiting the quality of life for the residents that live there."  Some of the problem Dileo attributes to what he calls the disability industrial complex (DIC).  Just as President Eisenhower described the military industrial complex, Dileo argues that the DIC is "a mega-system whose primary goal is to perpetuate itself."  The DIC is "vast and complicated, often self-serving. . . . It is a huge industry, aided by government-sponsored grants and often costly technology."  Like any bureaucracy, the DIC has a tendency to centralize and categorize.  It has a preference for segregated institutions, labeling people and placing people with the same label together.  This categorization and segregation hinders social development and the acquisition of skills needed to be a part of society as a whole.

Dileo specifically addresses sheltered workshops as an egregious example of the shortcomings of the DIC.  In these workshops, participants perform simple, sometimes completely pointless tasks, for a very low wage, pennies a week in some cases.  The employer will contract with an agency of the DIC, who will provide supervision and training for the workers who have disabilities.  There are many problems with this system.  The workers themselves get nothing close to minimum wage, but the labor department considers this to be OK.  Rarely do the workers learn skills that can be applied to a job in the open market.  Even though they may be working in a workplace that employs non-disabled people, they often have little interaction with other employees.  Finally, the job they hold is not their job; it's a job to be filled by someone--anyone--the DIC agency provides.  Thus, the worker does not build a sense of job ownership and accountability.

Dileo provides several examples of individuals with disabilities with whom he has worked who work in an open-market job alongside people who do not have disabilities.  The key is to look at the individual with disabilities as someone with unique skills.  Our tendency is to place the disability front and center.  Instead we should look at what someone can do, and find a place where his skills can be useful, where he can be productive.  Sheltered workshops, favored by the DIC, tend to perpetuate segregation and do not typically lead to mainstream employment.

Another DIC favorite is the group home.  While in most cases a step forward from the large institution, group homes tend to be much less like homes than programs.  Residents in group homes have little self-determination or control over the way they live.  Meals, group outings, schedule, even the setting on the thermostat, are determined by staff, limit choice and independence of the residents.  As much as possible, people with disabilities should be able to work toward self-determination, as we all do, by finding independent living and mainstream employment as much as possible.

The central theme that I picked up on in Raymond's Room is the necessity of community.  Dileo did not address this explicitly, but it was implied in every proposal he made.  The success stories he relates frequently include a coworker or neighbor or friend who comes alongside someone with a disability to encourage her or train her or simply give some advice or a kind word.  When someone with a disability is an active, present part of a community, his neighbors and coworkers will be more likely to offer assistance.  By contrast, when someone with a disability only gets out in the community as part of a large group on an outing, there is no opportunity there for relationships and community to develop with those who are not disabled.

Lest his critics jump on Dileo for wanting to push people with disabilities out the doors of institutions, I think Dileo would argue that he does not want them entering society with no safety net.  Dileo wants for his friends and clients and neighbors with disabilities what we all want: a community in which I am valued, to which I make a meaningful contribution, and in which I am sustained by and sustain others with bonds of friendship and community.  That is the greatest challenge of Raymond's Room: many of us tend to remain isolated from community.  We pay a price for that, but not as high as price as someone with a disability who is living on his own.  Is there a disabled neighbor or co-worker or fellow church member who could use my encouragement, guidance, or assistance?  Unless I am will to play a part in the life of someone with a disability (as Dileo certainly has), it would be disingenuous of me to embrace and promote Dileo's thesis.  I am convinced he is right, that the segregation of individuals with disabilities in institutions, group homes, and sheltered workshops must end, but it cannot without a community that will embrace those individuals.

You can follow Dileo's activities and read current comments on his blog.

The Disabled God, by Nancy Eiesland

In order to shape a theology of disability, one need not necessarily be disabled, but it's hard to imagine that anyone without a disability would be able to have the insight that Nancy Eiesland had. Through her book The Disabled God as well as many other writings, Eiesland, who suffered from a congenital bone defect, became a preeminent spokes-theologian for people with disabilities.  She died in 2009 (see this obituary in the New York Times).

In The Disabled God Eiesland draws on the disability rights movement as part of the larger civil rights movement, on liberation theology, and on the experiences of people with disabilities, including herself, to suggest a view of God who not only loves but identifies with people with disabilities.  Unfortunately, the church has not always been a place of welcome for them.  Part of the problem, Eiesland points out, lies in biblical and theological views of disability.  In the Old Testament, is someone was "blind or lame . . . a hunchback, or a dwarf, or a man with a blemish in his eyes," he was prohibited from offering sacrifices in the Temple.  Eiesland offers modern examples of churches preventing people from entering the clergy because of their disabilities.  In the New Testament, the message is mixed: disabilities are variously seen as signs of sin or judgment, an opportunity for God to show his power, a matter of "virtuous suffering," or an object of charity.  These attitudes have led to "marginalization and discrimination" in the church.

Eiesland offers a concrete example of institutionalized discrimination in the church.  The American Lutheran Church adopted a document which "wholeheartedly embraced the concerns of persons with disabilities and encouraged systemic change."  Yet, a short time later, the same denomination barred "people with 'significant' physical or mental handicaps" from ministry.  The more powerful stories are the personal experiences, such as those of Diane DeVries, who was born "without lower limbs, and with above-elbow upper extremity stumps."  When she sought to sing in the choir at church, the pastor refused, primarily for aesthetic reasons.  When Eiesland went to one church, she was told that she "need not go forward for the Eucharist."  Rather, she "would be offered the sacrament at [her] seat when everyone else had been served."  So for her receiving the Eucharist "was transformed . . . from a corporate to a solitary experience; from a sacralization of Christ's broken body to a stigmatization of my disabled body."

The important point here is the response of church leadership:

Rather than focusing on the congregation's practices that excluded my body and asking, "How do we alter the bodily practice of the Eucharist in order that this individual and others with disabilities would have full access to the ordinary practices of the church?" the decision makers would center the (unstated) problem on my disabled body, asking, "How should we accommodate this person with a disability in our practice of Eucharist?"

The difference here is subtle, but crucial.

The central argument of the book, that God showed himself as disabled, is not as strong, in my opinion, as Eiesland would have wanted.  She points out that when Jesus appeared to his disciples after his resurrection, he still bore the holes in his hands, feet, and side.  His body was broken, incomplete, not whole; he was disabled.  By appearing this way, Eiesland argues that Jesus "repudiates the conception of disability as a consequence of individual sin."  He "alters the taboo of physical avoidance of disability."  This is liberating for people with disabilities, giving them hope and reminding them "than even our nonconventional bodies . . . are worth the living."

Eiesland's book serves as a thoughtful reminder to church leaders who don't give a second thought to giving a place to people with disabilities in their congregation.  Most churches are reactive; if someone with a disability shows up, they will try to accommodate him or her.  But how much better and more reflective of God's intent if we fostered a spirit of worship in which people of all abilities would feel welcome?

She also challenges me, as an able-bodied reader, to reconsider my view of what human perfection and completion is.  I have always imagined that in heaven, our bodily ills would disappear: the blind will see, the lame will walk, etc.  But Eiesland would call on us to "reject the image of the 'perfect body' as an oppressive myth."  Eiesland is who she is because of her disability; in the N.Y. Times piece cited above, she states that without her disability, she would "be absolutely unknown to my self and perhaps to God."  The psalmist reminds me that God "formed my inmost parts, [he] knit me together in my mother's womb. . . . I am fearfully and wonderfully made. . . . My frame was not hidden from [him]."  That holds true for all of us, whether "temporarily able-bodied" or disabled.  Jesus, as the disabled God, affirms and connects to all people, disabled or not.

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.