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No Pity People With Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro, 1994
In 1988, Gallaudet students, alumni and faculty forced the administration to appoint a Deaf president. This protest garnered more attention than any other action by disabled people, but it isn't close to the first. Under the Americans with Disabilities Act, almost 50 million Americans are considered disabled. Many of these people do not consider themselves disabled; many of them do. A vocal segment of the disabled population, as well as people who care about them, have been advocating for disabled people's right in the last half century. Disability groups demand the services they need, proclaim their equality to abled people, and ask for recognition as human beings. Disabilities are diverse. Some people have sensory disabilities(deafness, blindness), some have physical disabilities(paraplegia, quadriplegia, Cerebral Palsy), some have mental disabilities(Down Syndrome, autism, manic-depression), and some have illnesses(Lou Gehrig's Disease, multiple sclerosis). The ability of self advocates with different disabilities to fight together isn't always exercised. When it is, the group represents a very large and politically powerful group. In the ten years since this book was written, some things have changed. More disabled advocate groups have advanced, prenatal screening for many more disabilities is an unfortunate reality, and terminology is different. One character in this book on whom a chapter is spent is classified as retarded, but now would probably get a label of autism. The research in this book is lacking. For his chapter on Gallaudet and deafness, Shapiro relies largely on books(I guess he doesn't know Sign), but for the rest of the book, he uses mostly articles. For many of his statistics, no source is given. A few I know to be incorrect. Some contradict each other. However, I appreciated the attitude of the book and the portrayal of the activist atmosphere. Happy reading.
Born premature in 1955, Stephen's incubator had too much oxygen. He was left with just enough sight to permit denial. To his friends, teachers, strangers, Kuusisto was a person with poor sight, not a blind person. But Kuusisto struggled with reading, shopping and crossing streets. Depressed, he abused alcohol and other drugs. Finally, Kuusisto grew up and accepted that he is blind. He learned how to use a cane. While learning to use a cane, he became interested in the mobility he would gain with a guide dog. At Guiding Eyes, Corky and Kuusisto made a good team. Eventually they returned to Guiding Eyes as employees. The last bit on Kuusisto's narrative, in which he learns to be blind, is the most interesting, but it takes up only a small part of the book. While covering his early life, Kuusisto dwells on the unpleasant parts instead of writing about how he accomplished what he did. He skips over his time as an adjunct professor almost entirely. Question: Can a whole(as in unfragmented) life be led without confrontation of disability? Happy reading.
When Emma offers her cousin Layla a secret, Layla eagerly swears her silence. But when she hears Emma's secret, Layla isn't happy. Emma is HIV positive. Emma has only told her caseworker, her mother and now Layla. Emma's secret haunts Layla. How can her cousin be dying? Emma joins a support group for teens facing HIV and AIDS in themselves and family members, and Layla soon comes along. The lies involved in deceiving Layla's parents and other kids grow, until they burst. Question: When is it wise to lie? Happy reading.
Jonathan's twin brother Jacob has become orthodox. Jonathan goes to visit Jacob, and is surprised to find that he enjoys the atmosphere of his brother's yeshiva. Jonathan's homosexuality, which Jacob had commented on so vitriolically in letters home, is not mentioned. Jacob's best friend convinces Jonathan to have sex with him. Jacob walks in on them, and Jonathan catches a plane back to America the next day. Jonathan resumes his life, estranged from his brother. Nana Jenny has a stroke, and the family convenes. Family history begins to come to light and with it comes family peace. For this book to agree with any known genetic pattern of male homosexuality, there would have to be two characters in the closet. Food for thought: Jacob tells Jonathan that acting in God's ways is important, even more important than belief in God. Does belief in God result in acting in His ways? Happy reading.
Detour: My Bipolar Road Trip in 4-D by Lizzie Simon, 2002
When she first sees the ad on the subway, it seems perfect: a business woman with the caption For People With Mental Illness, Treatment is Working. Herself a business woman whose bipolar is controlled by lithium, Lizzie identifies with the similiar ads cropping up. Inspired by the ads and incensed by the reaction of an alternative paper, Lizzie sets out to find young, successful, medicated bipolar people like herself. The very first person Lizzie meets is Nick, a very wealthy bipolar drug addict who is out of control. Nick and Lizzie fall in love. Fortunately for the plot, Lizzie has to leave Nick behind to set out and find succesful bipolar people elsewhere. To her chagrin, finding succesful bipolar people is hard. Most of the mental health professionals Lizzie asks for references don't know anyone who is holding together as well as Lizzie herself. The few that Lizzie does find have persevered, but are still struggling, not necessarily with their illness but with the stigma and the broken trusts that their manic episodes have left them with. Why Lizzie wants to interview only young people is not clear, as one of her stated goals for the book is to set roles models/guides for young people with bipolar, and older people would be more likely to have that experience. They might also be able to mentor Lizzie herslef. Question: One of the people interviewed says that, since her medicine makes bipolar managable, she enjoys having bipolar. That is, medicine allows her to enjoy bipolar without letting bipolar mess up her life. Are most bad things such that alteration or reduction could make them good? Happy reading.
Clinton Cole's not happy when Alex Crusan moves to his town and enrolls at his school. Alex Crusan has HIV, and Clinton doesn't want to get sick, and he doesn't want any fags around either. Since Cole has been vocal in his objections to Flinn's presence, the authorities are eager to believe that Cole is responsible for smashing the windows of Crusan's car, with Crusan inside. The only witness is Daria Bickell, a girl with Down Syndrome who waits every Monday morning for Alex to come by with donuts. She knows she saw Clinton throw a rock through Crusan's window, and the blue jacket worn by Crusan's assailant is the same as the one Clinton was wearing, so she reports that she saw blue jacket break the windows of Alex Crusan's car. The book opens with a memo to the principal, but continues with the narratives of Clinton, Alex, and Daria. Daria's narrative is given as poetry. Clinton and Alex grow from their experience. They learn about social interactions and about tolerance. Daria's narrative serves to provide the general information that Clinton and Alex aren't thinking about but which is important to the story. Clinton and Alex have happy endings, but Daria is worse off than when she started, because now she doesn't even have Alex. Strangely, the school does not seem to have any other retarded kids mainstreamed. The manner in which people with HIV are treated is important to the story. Alex's mother tells everyone that Alex got HIV through a transfusion, and while Alex is mad about the subterfuge, the manner in which he did contract HIV is still a cop-out. Question: If you knew anyone with AIDS or HIV at your school or workplace, would it matter? Happy reading.
Queer Science The Use and Abuse of Research into Homosexuality by Simon LeVay, 1996
People who believe that homosexuality is not chosen by homosexuals and that homosexuality cannot be cured are more likely to be tolerant of homosexuals. As a general rule, this has been understood and used by scientists and theorists. Hirschfield, a German gay activist who died in 1935, theorized that gays constituted a third sex- that they had female brains and male bodies. Hirschfield's own later experiences showed him that some gays were masculine, but to him these were not as gay as say, himself. The idea that gays were different from their own gender, that they had many transgendered traits(but were not transgendered) has been borne out by many studies. One study by Richard Green followed effeminate boys to adulthood. Only a fifth became heterosexual adults. Although therapies have been able to eliminate feminine behavior in boys, they have been able to prevent these boys from growing up to be homosexual. Probably the same thing that motivates the boys to act effeminate also drives them to be androphilic. As far as I know, the science in this book is mostly up to date. However, the legal situation in the United States as regards homosexuals has changed dramatically in the last 9 years. The Science Fiction Science Future chapter hasn't come to fruition. Nobody is doing prenatal screening for homosexuality, and there still isn't any diagnostic test for same. Cures haven't progressed much either. This book contains a lot of notes, most of which are merely references to books or articles. It also contains an index, useful for writing this review. One of my complaints with this book is that it doesn't mention asexuality, except for noting that the Hirschfield scale can show it. Question: If screening for homosexual fetuses could be done, would those fetuses be aborted? Educational reading.
Thirteen and a Day The Bar and Bat Mitzvah Across America by Mark Oppenheimer, 2005
At thirteen and a day, a boy can be counted in a minyan(prayer quorum). He has reached the age of knowledge, where it is hoped he will follow the commandments(mitzvot). The fanfare of today's bar mitzvahs is new. Bat mitvahs were invented by the reconstructionist movement, which is itself new. Today, bnei mitzvot are regarded as an focal Jewish ceremony. Very secular Jews still have their children perform a religious ceremony before the party. Oppenheimer visited bnei mitvot of six congregations. At opposite parts of the US, he attended the bnei mitvah of two adult converts in Florida, and the bar mitvah of a Lubavitcher in Alaska(the same family is in Sue Fishkoff's The Rebbe's Army. While visiting these communities, Oppenheimer took the opportunity to interview their most unusual members, and to speculate about their Judaism. Although the stories presented in this book are presented as typical, they aren't. Each of the communities shown is one of only a few like it. The first group of marginally religious bnei mitzvah that Oppenheimer looks at are rich. One organizer of these parties says families come to him saying that they have "only" 50 thousand dollars to spend. Myself, I've never heard of anyone spending half that. The Jewish renewal movement is a dying remnant of the hippie movement, and everybody is Alaska is unusual. New Haven's BEKI is one of a handful of egalitarian congregations nationwide. I was surprised when reading that chapter to see a family in MY egalitarian congregation mentioned (Hi Johnstons!) partly because they've been here in Chicago for years now. Question: What sorts of bnei mitzvah have you attended? Are any more profound than any others? Happy reading.
If It Weren't For the Honor- I'd Rather Have Walked Previously Untold Tales of the Journey to the ADA by Jan Little
In the last polio epidemic, before the vaccine, Jan Little became a cripple. No Wisconsin University took cripples, but the University of Illinois at Champaign-Urbana did, so that's were Little went. There she met other cripples and joined the Gizz Kids. Little had many sports adventures on many continents, ranging from small fundraisers to the paralympics. With her degree in journalism, she became an editor, where being a woman held her back more than being crippled did. MED(Medical Equiptment Distributors, Inc.) hired her to put their catalogue together, and Little was once again working in the world of the disabled. She was in the midst of innovative technology for the disabled, especially wheelchairs. On behalf of MED, Little was involved in legal action concerning the disabled, including the ADA. After MED collapsed, Invacare (a wheelchair company) hired her, and Little once again worked with crip technology. The book does not go beyond the point where Invacare downsizes and Little loses her job, although the prologue implies that there are more interesting bits to come. The subtitle is inaccurate- the journey to the ADA is covered in a very small part of the book. A lot of the book is composed of the adventures of being at Champaign-Urbana and the sports that went with it. The chapters are small humorous stories. Little is humorous and informative, but the grammer could use work. There are often enough parenthesis, commas, and dashes to utterly confuse me. Question: Much of latter half of this book is about competition between companies and how the customers benefitted. Do customers always benefit from competition? Happy reading.
Biblio Files Month 16 Books Reviewed:20 Total Books Reviewed:350 Days Blogged/Days In Period:12/31 New Members:none Total Number of Members:3 active Number of Hits This Data Period:277 Total Number of Hits:3069 Features Added: none My recommended books for this month: Deaf Like Me by Thomas S. Spradley and James P. Spradley Comments: Your turn! Readers, please comment.
Deaf Like Me by Thomas S. Spradley and James P. Spradley, epilogue by Lynn Spradley
In 1965, Louise Spradley got a funny rash. She worried that she might have gotten German measles or rubella. She was especially worried because she was pregnant. The Spradleys did not want a disabled child. When the baby was born, the doctors were happy to tell the Spradleys that there was nothing wrong with their daughter. But as baby Lynn got older, the Spradleys began to worry again. Although Lynn sometimes seemed to respond to sound, at other times she was totally oblivious to annoyingly loud noises. At 16 months, Lynn's hearing tested at a loss of 100 decibels for most pitches, and for more than 80 decibels for every pitch. The Spradleys began to learn how to teach their daughter speech. They were told not to gesture to Lynn, to face her when they spoke to her, and to speak a lot. The Spradleys work with Lynn to teach her to communicate their way. They try to augment what little hearing Lynn has. The Spradleys labor on, clinging to the hope than Lynn will learn to speak. When the Spradleys move to Sacramento, they take into consideration the schools and are happy to be moving to one that is oralist. But at their first meeting there, there is a discussion on total communication. The Spradleys find that less than 10% of deaf people can speak intelligibly, and that lip readers have to fill in a lot- they never are certain about every single word. After watching deaf children at school and realizing how much they rely on gestures, and seeing the easy communication between signing children and their parents, the Spradleys learn sign language. Lynn flourishes. This story is told as the narrative of Thomas Spradley, Lynn's father. His journey through the world of the deaf and disabled is one that I wish more people would go through. Through this book, perhaps others have. Thomas Spradley intelligently grows from his experiences. I dislike only two things about this book- that I want to know whether Lynn's speech improved after learning sign language, and that the Spradleys wanted to abort their daughter due to the risk of her being disabled. Food For Thought: In her epilogue, Lynn tells us about what happened after she learned to sign. In 5th grade, Lynn decided that she wanted to attend a residential school for the deaf, so that there would be more people that she could communicate with. How much is mainstreaming worth? Edifying reading
Miss Crane, Ashley's math teacher, has pulled a surprise test on the class. Not good. When a cop comes in and pulls Miss Crane out of class, the class bursts into gaiety. Except Nat, who sits in shock. After class, Nat explains: Miss Crane stole the prom money. Without some serious hustling, there will be no prom. This is a major bummer for Nat. And since Nat is bummed, Ash is bummed. Ashley outdoes herself working towards prom and in the meantime sorts out her life. This book is narrated by Ashley in a teenage tone that I can't follow. Ashley's motives are even harder for me to follow. Although I gathered what was happening, there was a lot that I missed. This would probably also be the case for any adult or really out of it teenager. However, since the general moral of the story is glaringly obvious(grown ups aren't bad and teenagers shouldn't shack up with boyfriends and education is good), maybe it needs that teen-friendly packaging. I don't know. Although the book is advertised as a Cinderella story, it isn't based on Cinderella at all. I would recommend this book to what Ashley calls normal kids, the kind that speak the lingo of this book. Happy reading
Hitchhiking through Asperger Syndrome by Lisa Pyles
Pyles' eldest son functioned badly in preschool. Although it was obvious to Pyles that her son was highly intelligent, he cooperated so poorly on an IQ test that he scored retarded. School exhausted John. After he met a girl who homeschooled, John began to pester his mother to homeschool him. When John's special ed class was slated for change that John's teacher believed would be detrimental to John, his mother decided to give it a try. She homeschooled John and his NT brother Jay for three years, at the end of which John was functioning well enough to cope in a normal classroom. The title is a metaphor. It means that just like when hitchhikers travel they do a lot of walking but also get lifts, so to do parents do a lot of parenting but also get lifts. While homeschooling, John was loosely put onto a GFCF diet(the gluten and casein in his diet were reduced but not eliminated). The homeschooling was done under the auspices of an umbrella school and not entirely independently. This is a both a narrative and a guide to some of the things faced by parents of children with Asperger Syndrome. It broadly covers what Asperger Syndrome is, what sort of systems and therapies are around to diagnose and deal with Asperger Syndrome, and how to deal with the therapies available. Names in this book have been changed to ensure privacy. However, this was not done efficiently, and although it seems that Pyles has one AS son, generally called John, he is referred to twice as Chris, which confused me. The guide to homeschooling assumes that the child is being raised by two parents. When I saw a section of the homeschooling chapter labeled Can A Single Parent Homeschool, I thought that it would address this issue. However, it is merely a letter from a homeschooling parent that left me wondering if the question is, can one person be enough to homeschool. This book offers lots of practical advise and encouragement. It covers one family's experiences on three continents, dealing with agencies and working with Asperger Syndrome. Although it is a good book, it has passages that are confusing to read and could have used some editing. Happy reading
An American Family by Jon and Michael Galluccio with David Groll
In December, 1995, Michael Galluccio and Jon Holden met their foster son. They took him home a few days later. Jon became a stay at home Daddy to Adam. He played with Adam and also gave him his medication, as Adam was born addicted to numerous drugs and having HIV antibodies in his system. Adam's mother relinquished her parental rights so that Adam could be adopted, and died a short while later. Adam's genetic father is unknown. However, Jon and Michael wanted to adopt Adam. When they found out that New Jersey's DYFS would not permit an unmarried couple to adopt, and that the DYFS was recommending that only Michael adopt, Jon and Michael weren't happy. They argued that it was not in Adam's best interest to have only one legal parent, and no legal bond between himself and Jon. The ACLU took the case and they went to court. During this time, the Galluccios(Jon changes his name during the time frame of the book) have had other foster children placed with them and Jon has been looking for his own biological parents. Adam's placement changed Jon and Michael and Michael's family. Chapters in this book alternate between the first person narratives of Jon and Michael. Pictures are given showing Jon, Michael, the kids, and the various parts of family. This isn't really the story of the legal battle, and the book doesn't even go into a comprehensive account of that battle. This is a story about an elastic family, the rights of homosexuals, and about adoption. Question: What makes a family? Happy reading.
The Boy Who Couldn't Stop Washing The Experience and Treatment of Obsessive-Compulsive Disorder by Judith L. Rapoport
Obsessive-Compulsive Disorder has been known for over a century. Freud wrote of it and claimed to cure it. Psychoanalysis didn't do much for OCs. People with OCD mostly hid their problem if possible, and OCD was thought to be rare. Surveys taken in the 70s suggested otherwise. Medication and therappy became available that could successfully decrease obsession and compulsion in some people with OCD. A show aired on television about OCD and its treatments in 1987, and viewers sent in responses for months. This book contains the stories of people with OCD, families where a father and a son have OCD, stories showing treatments, stories displaying different expressions of OCD, and some analysis of them. It also contains deeper thought on the nature of OCD, and whether it is related to Tourette's, and what it has been called in the past. The book has short chapters, divided into 5 sections, and it demarcates topics well. The stories in this book are mostly about boys and men. Rapoport says that in children, OCD is much more common among boys, but equal among adults. From her stories' subjects, I would have assumed that OCD is very rare in women and girls. The book includes an index as well as two appendices about the Catholic view of OCD and the Jewish view of OCD. The Boy Who Couldn't Stop Washing was published in 1989, but it continues to be quoted in books about OCD written now. Happy reading.
Between Their World and Ours Breakthroughs with Autistic Children by Karen Zelan
Because autism cannot be cured, and because psychoanalysis has been disastrously wrong about autism in the past, many people hesitate to send autists into psychotherapy. Zelan is a psychotherapist who believes that autists can benefit tremendously from psychotherapy. She feels that autists often feel badly about themselves due to knowing that they are autisic. Further, autists need help in discovering the differences between their worlds and the world at large: their identities are somewhat shaky. Having worked with 45 autists, Zelan feels that she is able to work with them and has tips for parents. Despite having met her first autists at Bettelheim's Orthogenic School, Zelan disagrees with his assertation that parents are to blame for autism. Zelan holds that autism drives parents away from positive interaction with their children, but that the lack of such interaction does not cause autism. Zelan also disagrees with the Theory of Mind theory of autism. She argues that differing scores on theory of mind tests is due not to inferior theory of mind in autists, but to a desire to please on the part of the normal children, and a creative intelligence on the part of autists. The children that Zelan talks about range from nonverbal to Asperger Syndrome on the spectrum. Zelan's chapters cover many topics without clear stops so that I got confused about which autist she was speaking of. The index let me know where she wrote of which subject, so that I could look back and remember what she'd already said. The book built on what it said cohesively, with the exception of one confusing chapter about a class of autists. From reading merely the cover of this book, I could see that it would not be a one dimensional analysis of autism. The back cover tells me that Zelan has coauthored a book with Bruno Bettelheim, and the front cover bears a recommendation from Dawn Prince-Hughes. I was a little bit disappointed to find that the book does not live up to its subtitle: it is not primarily about breakthroughs, and in fact, only one dramatic breakthrough occurs in the entire book. Although Zelan defenitely knows that autism has a sensory component, she does not attribute any aspects of autism to it, even her claim that autists are both drawn to and repelled by human interaction. Zelan seems uncertain on the topic of whether or not autism should be cured, and recommends that autists be told about autist acheivers. The three she mentions to exclusion of all others are Donna Williams, Temple Grandin and Paul McDonnell. I wonder about this, as Dawn Prince-Hughes is a friend of Zelan's! Enjoyable reading
Wasted The Plight of America's Unwanted Children by Patrick T. Murphy
America's child welfare agencies are failing the children. Children remain with abusive parents while parents receive counseling, and although the child abuse doesn't stop with therapy, the Department of Child and Family and Services does. Children placed into foster care are frequently placed with their grandparents- the same grandparents who abused their parent who abuses them. Despite the fact that 88% of Chicago's DCFS' charges are black, and that only a third of Cook County residents are black, the agency tries to place the children with parents in the same racial group, leaving black children without foster parents for longer, and making their placements more desperate. Murphy is the Cook County public guardian, meaning that he's in charge of the legal rights of young and mentally incompetant. This book is a mixture of autobiography, outrage, and suggestions for improvement of the system. The unwanted children he writes about are mostly those in Chicago, but he also mentions other metropolitan areas. This book was written in 1997 and since Murphy began his time in Chicagoland's legal system in the 60s, it contains stories and developments spanning decades. This is not a pleasant book. It isn't meant to be a pleasant book. The style of the book leads me to suspect that the readers are expected to do something to help, but what? Murphy doesn't suggest anything for the average reader to carry out. He doesn't urge readers to become foster parents. His only suggestions are for laws that politicians could make. Unsettling reading
