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?"
Showing posts with label intellectual disabilities. Show all posts
Showing posts with label intellectual disabilities. Show all posts
Friday, October 19, 2012
Thursday, March 15, 2012
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."
Was this review helpful to you? If so, please give my review at Amazon.com a helpful vote!
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."
Was this review helpful to you? If so, please give my review at Amazon.com a helpful vote!
Friday, October 21, 2011
Retarded Isn't Stupid, Mom, by Sandra Z. Kaufmann
Raising children with special needs can be full of challenges. Every parent has the task of providing children with a safe, nurturing environment at home, school, and in the community, but the task can be much more daunting if the child has physical or mental disabilities. Likewise, every parent struggles with letting go of the strings and control as children approach adulthood. Parents of children with special needs have to struggle with how many strings to let go, how soon, and then worry over and question every decision.
In Retarded Isn't Stupid, Mom, Sandra Kaufmann tells her story. When she is told that her daughter, Nicole, has mental retardation, her world is permanently and inextricably changed. In her sometimes brutally honest and consistently insightful narrative, Sandra tells stories of the good times, struggles, and failures of her family's life together with Nicole from early childhood to early adulthood. Besides her experiences as a mom, Sandra returns to college to complete her degree and ends up as a researcher in a UCLA ethnographic research group studying the lives of individuals with intellectual disabilities. So her researcher's eye adds to what might have been a typical parental narrative.
Sandra's stories will make you laugh and cry. Much of the focus of the book involves her helping Nicole work toward independence. Nicole, who repeatedly shows her resourcefulness and independent-mindedness in spite of her intellectual shortcomings, announces to her parents that she wants to move out. Against all logic and reason, they agree to help her get set up in an apartment. Shortly, her boyfriend moves in, leading to constant worry about pregnancy. Together, Nicole and her boyfriend--whom she would eventually marry--go through the typical trials of a newly independent couple trying to make it with their low-paying jobs. Facing the usual struggles, not to mention prejudice, mistreatment, and bad luck, with aplomb and determination, Nicole makes her way with some success.
One thing I hadn't thought much about before is friendships among adults with intellectual disabilities, and friendship between disabled adults and typical adults. The ideal would be for such friendships to get past the point of one helping the other, or serving the other, to both serving, loving, and learning from the other. Nicole sees the distinction here. At one point, in a conversation with Sandra about a trip to Universal Studios, Nicole said she'd like to go back with her sister, Jill, and Jill's boyfriend, "If they wouldn't be offended by us." After that conversation, Sandra wonders, "What would it be like to know that all the 'normal' people in the world, even brothers and sisters, merely tolerated you? To know that they would never permit the close sharing of reciprocated friendship?"
Sandra acknowledges that she and her husband do help Nicole in many ways; without their help, her struggles would be immeasurably greater. Even with the support that disabled individuals can access from community programs, as well as from government assistance, just getting by can be a huge challenge. For Nicole, many "angels" in her life helped her out with assistance on the job, at home, and around town. I was challenged to think about how I can be an "angel" to people with disabilities in my life.
Sandra bares all as she struggles with letting go of control in Nicole's life. Managing her own money, maintaining her own apartment, even opening up to the possibility of pregnancy, Sandra finally lets go and lets Nicole learn on her own, growing from her many mistakes. The Kaufman family's experiences are instructive for any parent, but parents of disabled children especially can relate to and learn from the hard choices they have to make.
In Retarded Isn't Stupid, Mom, Sandra Kaufmann tells her story. When she is told that her daughter, Nicole, has mental retardation, her world is permanently and inextricably changed. In her sometimes brutally honest and consistently insightful narrative, Sandra tells stories of the good times, struggles, and failures of her family's life together with Nicole from early childhood to early adulthood. Besides her experiences as a mom, Sandra returns to college to complete her degree and ends up as a researcher in a UCLA ethnographic research group studying the lives of individuals with intellectual disabilities. So her researcher's eye adds to what might have been a typical parental narrative.Sandra's stories will make you laugh and cry. Much of the focus of the book involves her helping Nicole work toward independence. Nicole, who repeatedly shows her resourcefulness and independent-mindedness in spite of her intellectual shortcomings, announces to her parents that she wants to move out. Against all logic and reason, they agree to help her get set up in an apartment. Shortly, her boyfriend moves in, leading to constant worry about pregnancy. Together, Nicole and her boyfriend--whom she would eventually marry--go through the typical trials of a newly independent couple trying to make it with their low-paying jobs. Facing the usual struggles, not to mention prejudice, mistreatment, and bad luck, with aplomb and determination, Nicole makes her way with some success.
One thing I hadn't thought much about before is friendships among adults with intellectual disabilities, and friendship between disabled adults and typical adults. The ideal would be for such friendships to get past the point of one helping the other, or serving the other, to both serving, loving, and learning from the other. Nicole sees the distinction here. At one point, in a conversation with Sandra about a trip to Universal Studios, Nicole said she'd like to go back with her sister, Jill, and Jill's boyfriend, "If they wouldn't be offended by us." After that conversation, Sandra wonders, "What would it be like to know that all the 'normal' people in the world, even brothers and sisters, merely tolerated you? To know that they would never permit the close sharing of reciprocated friendship?"
Sandra acknowledges that she and her husband do help Nicole in many ways; without their help, her struggles would be immeasurably greater. Even with the support that disabled individuals can access from community programs, as well as from government assistance, just getting by can be a huge challenge. For Nicole, many "angels" in her life helped her out with assistance on the job, at home, and around town. I was challenged to think about how I can be an "angel" to people with disabilities in my life.
Sandra bares all as she struggles with letting go of control in Nicole's life. Managing her own money, maintaining her own apartment, even opening up to the possibility of pregnancy, Sandra finally lets go and lets Nicole learn on her own, growing from her many mistakes. The Kaufman family's experiences are instructive for any parent, but parents of disabled children especially can relate to and learn from the hard choices they have to make.
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