Disability Studies Quarterly Summer 2001, Volume 21, No. 3 pages 211-238 <www.dsq-sds.org> Copyright 2001 by the Society for Disability Studies |
Book, Video, and Film Reviews |
Albrecht, Gary L., Fitzpatrick, Ray, and Scrimshaw, Susan C., eds. The Handbook of Social Studies in Health and Medicine. Thousand Oaks, CA: Sage Publications, 573 pages, $124.00 hardcover. Reviewed by Kristine A. Mulhorn, University of Michigan-Flint, Flint, MI. This book is an excellent reader in medical sociology and medical anthropology. It is up-to-date and well written and it provides an in-depth investigation of significant topics in this field. Topics required in a medical sociology course are all included - social construction of illness, the experience of illness, the doctor-patient relationship, and the distribution of health and illness within society. It is a classic reader in its format, but it provides a richer selection than most readers in sociology and each entry is buttressed by a strong literature review, rare in readers. The text would best serve as an reader for a graduate level course in medical sociology, assuming students have a solid background in sociological theory and terminology. A significant, unique chapter is called `The Global Emergence of Disability.' Gary Albrecht and Lois Verbrugge - both noted scholars in the field - provide a worldview of disability, including its definitions and measurement, and a historical perspective on the concept. An important piece for anyone introducing the text in a sociology course is the distinction between the medical model and the social model of disability. While Albrecht introduced this distinction in his earlier book, The Disability Business (Thousand Oaks, CA: Sage Publications, 1992), this chapter is a rare part of a larger volume on social studies in health and illness. As an instructor of an undergraduate course in sociology of health and illness for four years, I have used Rose Weitz's textbook (The Sociology of Health, Illness, and Health Care. Belmont, CA: Wadsworth Publishing Company, 1995) because of its insightful analyses and critical approach, but also because the author devotes an entire chapter to disability and chronic illness. Now, there is a new text that will provide a quality auxiliary text and resource that carries an appropriately extensive coverage of this important topic. The currency of the contents of the chapter is documented by the discussion of three important patterns in the study and measurement of disability: 1) the change in the World Health Organization's disability classification scheme; 2) the gradual acceptance that social factors, such as culture, political economy, and environment, affect our understanding of disability; and 3) the recognition of disability as a political identity. Atkinson, Robert. The Life Story Interview. Thousand Oaks, CA: Sage Publications, 1998, 103 pages, $28.00 hardcover, $12.50 softcover. Reviewed by Dona Avery, Arizona State University. The University of Southern Maine boasts a department of which I had not heard: The Center for the Study of Lives. It is not associated with the Biology or Psychology Departments; rather, it is a well-kept secret that I am pleased to help expose. Robert Atkinson, Director of the Center, has developed an archival treasure that, with the help of his graduate students, now contains more than 300 life stories - or "assisted autobiographies" (p. 2) - that are available to researchers in many fields. The academic domains of psychology, anthropology, folklore, religion, family studies, and gerontology, for instance, might draw on the narratives to demonstrate aspects of personal identity, communal traditions, value systems, political ideologies, and even sociolinguistic relationships "between language and social practices, the relation of self to others, and the creation of social identity" (p. 14). It is that latter domain - sociolinguistics - that personally interests me as a rhetorician who is fascinated by our language and its social constructs of difference. I suspect that is the reason I was asked to review Atkinson's text, The Life Story Interview. This thin book (actually referred to as a "paper" on the cover) is a quick read and it clearly makes the point that personal narratives are valuable research tools. However, I found little of use as far as conducting the life-story interview. Atkinson cites many references for other texts about interviewing and the narrative approach to research (e.g., Bruner, Erikson, Gergen and Gergen, Murray, Rosenthal, Tompkin), but his own "paper" seems off the mark as an instructional guide to interviewing. I found myself nodding, underlining, agreeing with his praise of personal stories, but impatiently expecting some suggestions on the "how to" of the interview process. Over and over again, the author stresses the value of the "hunt" - the life story - but postpones the actual safari, its equipment, and its dangers. To my mind, Atkinson needlessly spends the first twenty pages (or one chapter of four) in mere description of the trophy, while I have already donned my khakis and am ready to enter the jungle. A single paragraph on page 9, I feel, would have been a more economical way to begin. Atkinson writes that the personal narrative serves four classic functions: "bringing us more into accord with (a) ourselves, (b) others, (c) the mystery of life, and (d) the universe around us. . . . A [life story] contains symbols, motifs, and archetypes that speak to us on a very fundamentally human level; they reverberate beyond the personal and into the collective realm. . . . [S]tories touch a center of life that we all have within us" (p. 9). That's all I needed. But, then, I am already a devotee of personal narrative and Atkinson's 20-page praise-song was from a hymnal from which I have taught myself. To be fair, perhaps it takes twenty pages to persuade hard-core empiricists that there is quantum value in qualitative research. Yet, even in the remaining three chapters there is little more than reiteration of the value of life story. As far as contributing to the Bank of Knowledge the most we get is Atkinson's claim that his Center for Life Study archives are like a "safe-deposit box that we may access to make deposits and withdrawals" (p. 37). This is great, exciting news, but why not publish a brochure instead of a university press text? Chapter 2, "Planning the Interview," does begin to give ideas about interview questions (they should be open-ended), the number of visits (two or three), and the duration of the visits ("an hour to an hour and a half each") (p. 24). And this sage advice: "Listen well" (p. 33). The rest of the chapter seems redundant except for comparing the interviewer to a "midwife" who can draw the life story from the subject. Chapter 3 is a little more helpful. "Doing the Interview suggests a couple of ways to spark the storyteller's memory: Have him or her draw a time line of key events, or make a collage from magazine graphics or actual photographs." There are ten pages of sample questions the interviewer could ask that should serve as springboards to memory. Chapter 4, "Interpreting the Interview," speaks a little to the "creative relationship" to be built between subject and interviewer ("teacher and student") (p. 70) and to the maxim that the storyteller is always "the expert and the authority and that her/his words should never be altered" (p. 59). But do we really need to be told to double-space, punctuate, and use good paragraph form? That reminder is only a small part of the chapter, of course; the rest is, once more, dedicated to the value of the life-story. The important parts of this book, I feel, are buried in the jungle of justifications for the arts of storytelling and interviewing. The author missed an opportunity to talk more about integrity on the part of the interviewer, i.e., being true to the storyteller's intent (mentioned briefly in the conclusion of Chapter 4). Atkinson might also have expounded on the provocative issue of power, on which he spends but a paragraph. When he asks, "Is it true that the questions you choose to ask shape the story that is told?," he hedges in his ambiguous answer: "I tend to think the answer . . . [is] closer to `it depends' than to `yes' or `no'" (p. 75). Personally, I tend to think that volumes could be written about the power relationships in an interview situation and that it is crucial that the researcher recognizes his/her own power in the interviewer role. In the Appendix Atkinson provides a sample release form and a sample life-story. He also offers a healthy bibliography. However, because this "paper" is disproportionately weighted to the defense of the author's disciplinary interests, it reads, to me, like an argument for tenure, or, possibly, it is positioned to attract funding or other validation for his Center for Life Study. My recommendation is to get hold of a copy of this text, then copy pages 67-68 and spend your time reading one of the more enlightening reference works on narratives and interviewing. Atkinson's final line of the book, though, is bumper-sticker worthy: "The more we share our own stories, the closer we all become." What I would like to read is an account of one life-story as it is being shared, complete with all the questions and all the responses evoked, and with an account of the interviewer's decision-making process as she/he selected, rejected, and organized the usually disconnected elements of the several interview sessions, to shape a single, readable, coherent narrative. Then I would like to see the storyteller's response to the edited story: Was meaning correctly interpreted? Is there anything the teller would change or add? A comment on the insights the teller gained, even as she told the story, would be fascinating, too. That is the kind of text I would like to see Atkinson (or someone) offer. Show us by example the ways in which stories get told, who tells them, who might influence them, and how different audiences receive them. This kind of knowledge is vitally important as regards the disability community for, if it is true that "we have entered the age of narrative" as Atkinson writes (quoting R. Josselson on page 74), there will be more and more opportunities for our stories to be heard. Perhaps some of them will even end up in Atkinson's archives in the Center for Life Study. But we do need to reflect on our stories and the way they are told and retold and we need to be aware of our interviewers' strategies and intentions. Attwood, Tony. Asperger's Syndrome: A Guide for Parents and Professionals. London, England: Jessica Kingsley Publishers Ltd. (Distributed by Taylor & Francis, Inc., 47 Runway Rd., Suite G, Levittown, PA 19057-4700; 1-800/821-8312), 1998, 223 pages, $18.95 softcover. Reviewed by Moira W. Hutchins-Fuhr, Ph.D., Santa Cruz, CA. Tony Attwood's book, Asperger's Syndrome, is an excellent, comprehensive guide for both parents and professionals on the topic of Asperger's syndrome. The book includes a thorough description of behaviors and abilities that lead to the diagnosis of the syndrome. Special attention and detail regarding expected social behavior, language, interests and routines, motor clumsiness, and cognitive and sensory sensitivity are also included. Each of those chapters ends with a handy summary of strategies to use in improving the individual's quality of life in regard to that particular topic. The last chapter includes complete and detailed answers to most frequently asked questions about Asperger's syndrome. The Appendices include specific and practical resource materials as well as further information on diagnostic criteria. In answering the most frequently asked questions about Asperger's syndrome complicated issues are addressed, such as a comparison of Asperger's and high functioning autism, the incidence of depression in people with Asperger's syndrome, and treatment of the emotional components. The book is excellent in its coverage of these issues and recommendations which are pragmatic and comprehensive. Also, in considering the etiology of the syndrome genetics, unfavorable obstetric events and infections during pregnancy and early infancy that affect the brain are all discussed. The author includes many selections of poetry and prose written by people with Asperger's syndrome who are particularly eloquent in expressing their own impressions of the worlds in which they live, both internally and externally. A beautiful example is the following: "People everywhere, /Talking, wearing bright colours. /The talking is like the pounding of horses' hooves. /The bright colours are blinding, /The talking hurts my ears, /The bright colours hurt the eyes. /Oh why can't people be quiet and wear dull colours" (Dianne Mear, 1994, p. 42). In conclusion, this book is a sensitive and thorough exploration of Asperger's syndrome that includes a thoughtful selection of strategies and materials to respectfully improve the quality of life for people with Asperger's syndrome and their loving friends and families. Budetti, Peter P., Burkhauser, Richard V., Gregory, Janice M., and Hunt, H. Allan, eds. Ensuring Health and Income Security for an Aging Workforce. Kalamazoo, MI: W.E. Upjohn Institute for Employment Research, 2001, 529 pages, $43.00 hardcover, $25.00 softcover. Reviewed by Raymond E. Glazier, Ph.D., Director, Abt Associates Center for the Advancement of Rehabilitation and Disability Services, Cambridge, MA. This tome is a collection of commissioned papers and comments based on a January 2000 conference on the topic convened by the nonpartisan, nonprofit National Academy of Social Insurance. Among the contributors are a number of stellar labor economists and other leading experts. The Editors' Introduction provides a helpful synopsis of the contents of each section. Anyone considering adopting the book as a classroom resource text or anyone interested in a particular topic in this general area need only read that introduction to ascertain the collection's usefulness to her/his particular purpose. Aging members of the baby boom generation will swell the number of older American workers to double their current number within a twenty-year span. And with advancing age, inevitably, comes increased likelihood of disability. The Workers Compensation program focuses on traumatic injury and rehabilitation and not on chronic impairments. Legislation and court rulings have reduced access to Workers Compensation benefits and lowered compensation in recent years. However, that program, unlike Social Security Disability Insurance (SSDI), does recognize partial disability. Thus, Workers Compensation may be hard hit by partial disability claims by greater numbers of older American workers. The larger consequence of the aging of the U.S. workforce is the fact that fewer and fewer workers will be paying into the Social Security trust funds, while more and more retirees will be drawing benefits. These are among the policy challenges that the symposium and this resulting collection of papers were to address. Session I "Charting the Landscape: What Risks Do Older Workers Face?" There is a generally positive association between age and work disability. Further, Burton and Spieler note that older workers have fewer, but more severe, work-related injuries. And a greater percentage (15%) of near-retirees (ages 55-64) approach retirement without health insurance coverage. The policy agenda is highly political pro-work or for income support improvement. The papers in this section are balanced by the inclusion of employer and labor union perspectives. Workers Compensation income replacement programs for persons with permanent partial disability vary by state, but are uniformly inadequate. "Yet, conditions that are substantially aggravated by working [e.g., back problems, the largest category] may be more prevalent among older workers" (p. 53). Older workers incur more permanently disabling injuries, but, with the rise of disability management, there are even greater cost pressures to return to work. However, "The job mobility of all disabled workers is limited [and] aging workers with disabilities face even greater barriers" (p. 73). Burton and Spieler foresee cost-shifting from Workers Compensation to SSDI, which brings with it Medicare eligibility. Nadel notes that although the prevalence of disability appears to be falling among older persons here and in other industrialized nations, almost a quarter "of older Americans report a disability that affects their ability to work. The SSDI disability incidence rate among workers aged 55-59 declined by a third (from 2.1% to 1.4%) between 1975 and 1999, but this may simply reflect the early retirement trend" (p. 139). Nadel examined the age distribution of the three largest SSDI disability categories of beneficiaries. He found steady increase in musculoskeletal system disease for older beneficiaries, marked increase in circulatory system disease, and a marked decrease in mental disorders by age. However, the latter is a cohort effect reflecting changes in the SSDI allowances for younger workers and consequent large numbers of them. "Not only are older workers more likely to get DI [SSDI] benefits [but] older workers have a lower tendency to return to work; once working they have a higher tendency to stop working" (Hennessey, quoted on p. 143). Factors that mitigate the employment and economic risks of disability include accommodations by one's employer, a supportive family, and good medical care. But, of paramount importance are one's educational attainment and the changing nature of work itself. Nadel opines, "The current policy response to the increased prevalence of disability among older workers is to make it relatively easy for older workers to be awarded SSDI" (p. 158). Haveman's paper presents some basic characteristics of older workers (ages 45-65), viz., that they constitute one third of the work force, one fifth of the unemployed, and one third of the insured unemployed. They have less education, fewer skills, and less flexibility than younger workers. Among those within the sub-group of older workers who have health problems, there is lower educational attainment, a higher incidence of minority members, and a greater number of jobs that are marginal to the labor market. "For many of these more marginal older workers, policy changes enacted over the past few decades have caused economic hardship" (p. 165). During the prosperous 1990s there were increasing disparities of income and wealth. Session II "Job Loss: Income and Health Insurance." Historically, employment-based health insurance has predominated in the U.S., so access to health insurance has been inexorably linked with job status. Not working has been an eligibility criterion for public insurance, Medicare and Medicaid. Early retirees, temporary workers, and unemployed persons often have no coverage, despite COBRA provisions, prior to their impoverishment. Chan and Stevens point out the substantial impact of job loss on older workers' earnings, wealth, and retirement resources. And they note that older workers suffered greater job losses in the last economic recession. Job loss has a lasting effect on the future employment probabilities of older workers. Two years after a job loss at age 55, nearly 20% fewer men and 25% fewer women were working than if they were still employed at 55. Earnings are immediately reduced by a third and remain 20% lower even six years later. Effects on pension and non-pension wealth are complicated, but less stark. The paper by Pollitz notes the health status effects of lack of health insurance coverage which is less common for the pre-retirement (ages 55-64) cadre of Americans than for other non-elderly age groups. Extension of private employer health insurance coverage to retirees and their families is less common than in the pre-Medicare era, though COBRA guarantees allow early retirees to buy that coverage for a limited time. Another health security option for the near-elderly is the Health Insurance Portability and Accountability Act of 1996 (HIPAA) which bars discrimination based on pre-existing conditions or past heavy utilization of benefits. Some state insurance reforms have gone beyond the HIPAA protections and some 25 states have high-risk pools to guarantee access to overage for the medically uninsurable, with the near-elderly paying much higher premiums because of the universal practice of age rating. Older workers and early retirees rely heavily on individual coverage which was little affected by HIPAA. A key public policy question is whether social insurance should be reworked to provide a better safety net for older workers, to increase work incentives, or both. In her commentary closing out the second session, Swartz points out that an improved safety net may have the perverse effect of encouraging employers to dump older and/or disabled workers in favor of younger, presumptively more productive ones. Session III "Chronic Illness and Disability: Policy Issues for an Aging Work Force." Biddle, Boden, and Reville demonstrate that older workers suffer more permanently disabling injuries and that those permanently disabled workers have more injury-related non-employment. Their three-state study of losses suffered by permanently disabled workers found that states differ markedly in proportion of injured workers receiving permanent disability benefits, in fraction of lost earnings replaced, and in degree of targeting benefits to losses. The paper by Burkhauser, Daly, and Houtenville references Nagi's 3-stage measure of disability, which is commonly used in the social science literature: Pathology (malfunction /disruption), Impairment (loss of/limit on function), and Disability (inability or limit on social role performance). These authors examine employment, labor earnings, and economic well-being of non-institutionalized persons with and without disability using Current Population Survey (CPS) data for an 11-year period, 1987-1998. They discerned that the CPS definition of disability differs both from Nagi's paradigm and from the Americans with Disabilities Act (ADA) definition in that it only considers limitations on work. Given that fact, "the prevalence of [CPS-defined] self-reported disability increased across almost every age, gender, race, and educational group between 1988 and 1999" (p. 296). The authors found a major decline in the labor market participation of people with disabilities during the economic expansion of the 1990s, despite the implementation of the ADA over that decade. Flynn's article on disability management by employers proposes four public policy measures to support employer efforts to maintain a productive workforce: 1) a seamless, no-fault disability benefit system linking income support and return-to-work services; 2) regulations that protect confidentiality of medical records, but give employers and insurers access to needed personal information (a seeming oxymoron); 3) employer tax incentives for effective disability management; and 4) regulations that promote workplace flexibility and reward innovative employers. Gottlich and Nemore's commentary offers a primer on how to obtain public health insurance coverage and summarizes the Medicaid and Medicare programs. It then discusses current problems with both programs. Wolfe's more critical commentary outlines the issues and then reviews each paper's contributions and shortcomings in addressing the research questions set forth. Session IV "Is Working Longer and Retiring Later Possible? Is it Desirable?" Burtless and Quinn's paper points out that the trend toward earlier retirement has been declining and came to a halt in the 1980s. "Along with workers in Japan and Scandinavia, Americans now leave the paid workforce later than workers anywhere else in the industrialized world" (p. 411). They sense a resistance among older workers to proposals to move up the Social Security retirement age and a preference for the longer retirements that increased life expectancy offers. Given higher productivity trends and the wealth of the nation, the authors think that it is a simple matter of choosing priorities. They seem to favor longer work lives and later retirement. Rappaport discusses retirement trends and policies from the employer perspective. In framing his discussion of increased life expectancy and ability to work, Pransky looked at National Health Interview Survey (NHIS) data from 15 years, 1981-1996, comparing the pre-retirement (ages 45-64) and post-retirement (65-74) age groups. He finds a greater prevalence of disabling conditions, but an across-the-board lesser prevalence of activity limitations. Other research that he cites shows that healthy lifestyles correlate with greater disability-free years of life. But there is an inverse correlation between negative health risk behavior and income. Thus, there is a need to stratify data by income level in analyses. Not surprisingly, "the effects of the normal aging process may be a much more common potential limitation to extending regular employment for most workers than are specific diseases. . . .[and] it appears there is more variation in physical and cognitive abilities among older people than among the young" (p. 435). In Ghilarducci's summary of and commentary on the session, she notes that raising the normal retirement age shortchanges African-American males as a class because their life expectancy is significantly shorter, meaning that, on average, they collect fewer dollar benefits over a shorter period. However, her implicit assumption (not demonstrated) seems to be that the lower average life expectancy of Black males is a reduction of post-retirement years and not related to substantial early mortality. Ghilarducci nicely summarizes six specific proposals of the Burtless and Quinn paper and then identifies the winners and losers from that set of recommendations for Social Security reform raising the normal retirement age. The winners: employers and higher-income older workers. The losers: blue-collar workers, middle-class workers, older women, and workers of all ages (a larger labor force depresses wages). Session V "Filling Gaps in Health Coverage: Sharing Responsibilities and Costs." The paper by Nichols comments that the 45-54 and 55-64 age cohorts are the most likely non-elderly groups to have health insurance coverage and that people 65 and over have Medicare. Thus, children and their parents are the at-risk segment of society in health insurance terms. Nevertheless, the financial risk of non-insurance is great for the pre-Medicare 55-64 group because of their aging and their general health status. Within that cohort, lower income and poorer health status persons, pre-disability, are most at risk (17% of the 55-64 age group). There are two trends that aggravate the situation: the aging of the baby-boomer generation and the decline in employer-sponsored retiree health insurance. Based on simulation outcomes for various proposed policy changes, Nichols offers four options for filling the health insurance gap for 55-64-year-olds: 1) a COBRA extensions mandate (creates employer burden, would lower wages), 2) public program expansions of Medicaid (would raise state cost-sharing) and Medicare (would raise federal taxes), 3) tax credits (does not help the poor), and 4) direct federal subsidies (Congressional support for this new entitlement is lacking). Chollet points out in her commentary that "older women are less likely to have health insurance coverage than they were a decade ago" (p. 477). Her assessment of Nichols' proposals finds them attractive but lacking in social equity. She argues that the HIPAA model, though flawed, is a reasonable one. McArdle, commenting from the employer perspective, argues against employer mandates, finds fault with tax credits, considers COBRA's administrative burden on employers unacceptably high, thinks retiree health coverage unrealistic, then offers some complex proposals of his own. Rowland, in her commentary, argues for improving public health insurance programs for all age groups. For example, she would have federally mandated Medicaid coverage to eliminate state-to-state variation and she would extend it to a broader lower income population building on the success of the federally mandated, state operated Children's Health Insurance Program (CHIP). Corker, Mairian. Deaf and Disabled, or Deafness Disabled?: Towards a Human Rights Perspective. Buckingham, England: Open University Press (Distributed by Taylor & Francis, Inc., 47 Runway Rd., Suite G, Levittown, PA 19057-4700; 1-800/821-8312), 1998, 175 pages, $25.95 softcover. Reviewed by, Dr. H-Dirksen L. Bauman, Associate Professor, Deaf Studies, Gallaudet University. Among the first of its kind to forge connections between Deaf Studies, Disability Studies, and postmodern theory, Corker's book is no light summer reading. Her complex, sinuous line of thinking ultimately links deconstruction, epistemology, and postmodern identity construction with legislation, counseling, and early education practices. The impetus for Corker's argument is the vexing relationship between culturally Deaf and disability rights groups. (Note: The capitalized Deaf refers to the linguistic and cultural identity.) The historic and current impasse, according to Corker, derives from essentialist positions which result in limited identity constructions based on either/or thinking practices: either you are disabled or non-disabled, hearing impaired or Deaf. Instead, Corker espouses a postmodernist approach that accounts for multiple, contradictory, and dynamic identity constructions not allowed within an essentialist dichotomy. Deaf and disabled people should be encouraged to see that their fragmentation only serves to deepen the ableist oppression that affects both groups. By the end of the book, it becomes apparent that Corker is essentially searching for a new category that accounts for those like herself: she is neither culturally Deaf nor has she internalized the values of a hearing, phonocentric society. Instead, she is a deaf advocate for human rights for all those subjected to oppression based on bodily difference and, for that matter, all those subjected to any and all forms of oppression. Deaf and Disabled stands to incite new critical debate into this perennially thorny relationship. While many culturally Deaf activists may take issue with Corker's criticism of the Deaf agenda, at the very least it stands to deepen their awareness of their own position - and, in so doing, actually draws the two groups together into a lively interrogation of the simultaneous oppression that affects them both. But, to date, Corker's text has yet to incite such worthy discussion among Deaf activists in the United States, perhaps because it remains accessible only to those fluent in postmodern theory. Her thinking is theoretically sharp, but her writing dense. Ironically, Corker advocates for broad political emancipatory work, and, yet, her text is targeted to a highly specific audience. Perhaps realizing this, Corker attempts to introduce postmodernist concepts through bold key words, graphs, none of which are as particularly illuminating as one would hope. But for those who do read it, it is our job to join Corker's sharp questioning and to carry the consequences of such critique to the realms of education, psychology, and law. In short, this is a book to be reckoned with, and the task is well worth it. Crutchfield, Susan, and Epstein, Marcy, eds. Points of Contact: Disability,
Art, and Culture. Ann Arbor, MI: The University of Michigan Press, 2000,
307 pages, $47.50 hardcover, $17.95 softcover. Points of Contact is a book in the University of Michigan series edited by David T. Mitchell and Sharon L. Snyder titled Corporealities: Discourses on Disability. It provides "multiple points of entry into the study of disability" and "myriad opportunities for understanding how disability permeates our individual lives as well as our collective social and artistic life" (Note to Teachers and Students, p. vii). Mindful of recent developments such as the design of the FDR Memorial, the activities of ADAPT, the National Federation of the Blind and Disney Studios' Mr. Magoo, of Christopher Reeve, of Share a Smile Becky (Mattel's wheelchair-using friend of best-selling Barbie), and the explosion of conferences and web sites, the editors have collected essays, poems, and stories that afford an assessment of disability as an aesthetic, political, and cultural idea. The material they present explores the condition of disability, which, they note, "rests both in identity and in a complex set of social relations that can affect many people, if not all, and all sentient life" (p. 9). By expanding the concept of identity and disability, Crutchfield and Epstein offer us an "invitation to read the world afresh from the broadest spectrum of artistic life" (p. 19). The entries speak for themselves. What the editors have done, in a notable, masterful way, is sequence each work in a conscious, careful continuum where the issues raised in one lead naturally to the next selection, as if a course were being taught or a long conversation taking place by a skillful teacher/facilitator. What better way to design an anthology, not by alphabet or subject but by segue! We start with a powerful outrage: "My Withered Limb" by Tobin Siebers, who describes ridicule, solitude. He reminds us that Darwin found that the unfit die when they are made visible to the predator (p. 24). "I am not like any of you, and I don't want to be like any of them. I am who I am. I am my withered limb," he concludes (p. 30). In the "voice of an oppressed minority" (p. 31), Joseph Grigely reacts to an art show presenting the responses of blind people to the question of what their image of beauty is. The comments, photographs, and Grigely's postcards to the artist are on the mark: "Why have you transcribed the voices of the blind into a medium to which they do not have access?" (p. 36). Postcards! Returning what has been taken! A most effective medium. Poetry follows, but it is not gentle relief. A later poem gives us the unique view of a prosthesis maker. Then, next, another surprise: FDR must be considered, but juxtaposed with Wolfgang Schauble's campaign for Chancellor in Germany ("Ein Kruppel als Kanzler?" - "A cripple as Chancellor?" reads the cover of Stern magazine). Another stroke of editorial genius. And what of theatre? New voices are explored in Victoria Ann Lewis's "The Dramaturgy of Disability." Perhaps they say it best: The tragedy of disability is not individual but societal. The loss is outside the individual where a culture denies potential resource through architectural and attitudinal barriers. If you do not know Susan Nussbaum or Cheryl Marie Wade or John Belluso, or performances such as "Tell Them I'm a Mermaid," "Musuganismo," or "Staring Back," there are several examples of "crip humor to get you started." The next piece, Stephen Dixon's "The Motor Cart," does not look like a play, or a poem, or anything but one long paragraph, but it is not traditional prose as it continues the exploration of lives with disabilities. "In your face" are Eli Clare's poem answering a question from "curious people who ask . . ." and Reginald Shepherd's "About a Boy." Not so the poem by Brooke Horvath, "Reading `The Gingerbread Man' with My Daughter." Also poignant, but also funny is Dallas Wiebe's piece on forgetfulness. The effects of fetal alcohol syndrome are next brought home clearly and graphically: "In Native tradition we decide things by how they will affect people seven generations from now. I am a warrior, and I need to protect the seventh generation of all peoples against alcohol" (p. 149). In case Joseph Grigeley's postcards are still echoing in your mind, "Letters to Helen," Georgina Kleege's response to Helen Keller's "inquisition regarding a false accusation of plagiarism (Mark Twain called the panel a bunch of `decayed turnips,'" p. 150), stretches the medium still farther and equally powerfully. Also in new territory, Sarah Ruden addresses life and art and pre-menstrual syndrome. Still in the fearless mode, "The Beauty and the Freak" gives a cultural analytical spin to a consideration of bathing beauties, Siamese twins, and the spectator of their displays. An essay on the making of the disability documentary "Vital Signs: Crip Culture Talks Back" covers such stars as Anne Finger, Julia Trahan, Kenny Fries, Cheryl Marie Wade, Elizabeth Clare, Harlan Hahn, Brad Rothbart ("enthroned"), Bob DeFelice ("Cripples' have class." It sounds like Victorian back bedrooms. I like that. It's got mystery), Mary Duffy ("my body was the way it was supposed to be. It was right for me, as well as being whole, complete and functional"), Carol Gill, Carrie Sandahl, Simi Linton, and good old Shirley Temple in the film Heidi ("I should think you could walk if you wanted to enough - why don't you try!") (pp. 197-217) The denouement includes more strong poetry, life endings, identity, roles, and Christopher Reeve's father ("disabled relative - husband of a deaf novelist-professor"). The book closes, appropriately, with "Eclipse," a description and sampling of Bell Gale Chevigny's theater workshop. It starts and ends with bombardments of questions: "When you go to heaven, will your leg be waiting for you?" "Do you cry when you go to the ballet?" (p. 263) "Is there a telethon for that?" (p. 281). Like any good teacher or writer, the editors pull threads through ("If you really wanted to walk, don't you think you could?" [p. 263] -remember Shirley Temple? Or Eli Clare's poem "To the Curious People Who Ask, `What Do Your Tremors Feel Like?'" [p. 119]). Points of Contact does what a good anthology should do--explores, informs, and invites to expand. Doyal, Lesley, ed. Women and Health Services: An Agenda for Change. Buckingham, England: Open University Press (Distributed by Taylor & Francis, Inc., 47 Runway Rd., Suite G, Levittown, PA 19057-4700; 1-800/821-8312), 1998, 272 pages, $26.95 softcover. Reviewed by Linda R. Mona, Ph.D., Visiting Assistant Professor, Pacific Graduate School of Psychology, Palo Alto, CA. Women's health issues have been moving increasingly to a higher priority level on the medical services agenda for the past 15 years. However, specific information about theoretical explanations and best practices models have been a bit less evident. Women and Health Services presents both conceptual and practical information about women's health services in the United Kingdom. Diversity issues, including ethnicity, socioeconomic status, aging, and specific health-related conditions, are addressed. Although disability is not explored in a general sense throughout this text, implications can be drawn from the chapters focusing on specific medical conditions (i.e., psychiatric disability, coronary heart disease, breast cancer). This book is an interesting blend of theory, practice models, and case examples. Chapters within this book are organized around two themes - women and health service: the case for change and principles into practice. The first section examines topics at a theoretical level including poverty, reproductive health needs across the life span, health and aging, health needs of minority ethnic communities, psychiatric services for women, gender and the treatment of heart disease, and women and smoking. The latter half of the book actually describes practice models and the outcome data on the effectiveness of treatment paradigms. Within these proposed parameters, the chapters are well organized and interesting to read. Readers may initially question the degree to which this book furthers our understanding of Disability Studies. Given that health services are often an important and necessary part of the disability experience, much of the information put forth is useful for broadening the knowledge base of the lives of women with disabilities. Even though information on health services for people with disabilities is organized by type of disability, and, thus, seems a bit medically focused, useful data is presented that can be applied across disability lines. In fact, it may be far too difficult to tackle a broad chapter on the disability experience given that health services models vary greatly depending on the presenting condition. Overall, this book is a good foundation for the needed examination of health-related services for women. This piece was written three years ago, and, thus, the reader must keep in mind that updated information in this field is most likely available. The reader is also reminded that the information in this text is based primarily on work completed in the United Kingdom. It is wondered how this information and these practice models might translate to other countries. Scholars of Disability Studies may find this book helpful when teaching students about the intersections among gender, health, disability, and access to services. In summary, this book is recommended as an initial step toward examining health services for diverse women, including women with disabilities. Academics in public policy, public health, social work, sociology, medical anthropology, and psychology may be most interested in this work. Gatchel, Robert J., and Turk, Dennis. C., eds. Psychosocial Factors in Pain: Critical Perspectives. New York, NY: The Guilford Press, 1999, 528 pages, $60.00 hardcover. Reviewed by Hanoch Livneh, Rehabilitation Counseling Program, Portland State University, Portland, OR. The role played by psychosocial factors in producing, influencing, maintaining, and magnifying the experience of pain has been the subject of much clinical, theoretical, and empirical investigation during the past 40 years. In their book, Gatchel and Turk have succeeded in providing the reader with a comprehensive review of the current state of the art on the biopsychosocial context and clinical management perspectives of pain. The review is organized into three broad sections. Part I focuses on the various biopsychosocial contexts underlying the experience of pain (e.g., biobehavioral, personality and psychopathology, emotional, developmental). Part II is geared toward reviewing the most prevalent pain syndromes and the populations affected by them (e.g., acute pain, low back pain, fibromyalgia, cancer pain). Part III concludes the volume by addressing a variety of issues relating to the prevention and management of pain (e.g., coping with pain, pain management in primary care, family therapy for chronic pain sufferers, evaluation of treatment effectiveness). The major strengths of this edited volume, in addition to containing contributions from well-recognized leaders in the field of pain assessment and management, include the following: (a) material organized into well-structured topical domains, (b) an encyclopedic breadth of listed references, and (c) an expertly produced balance of theoretical perspectives, assessment procedures, clinical and management approaches, and empirical findings on the psychosocial facets of the pain experience. This otherwise excellent contribution to the field of pain studies is beset by occasional heavy reliance on the technical use of medical and anatomical terminology that most psychologists and other non-medically trained professionals, such as vocational rehabilitation counselors and social workers, may find difficult to follow. Also, the inclusion of a few populations of pain sufferers (e.g., irritable bowel syndrome, herpes zoster) at the expense of others (e.g., cardiac conditions, spinal cord injuries) is somewhat puzzling. These minor issues, however, should not deter readers who are interested in gaining better understanding and appreciation of the biopsychosocial aspects of pain from giving this remarkable volume their full attention. Goldberg, David, and Thornicroft, Graham, eds. Mental Health in Future Cities. East Sussex, UK: Psychology Press Ltd., 1998, 290 pages, $59.95 hardcover. Reviewed by Barbara Granger and Pete Bragg, Matrix Research Institute, Philadelphia, PA. This ambitious, dense, and well-written, if somewhat inconsistently reported, monograph takes a point-in-time (1997, as a part of an international conference in London) snapshot of mental health services good practices from 11 cities worldwide, mostly medium-sized to smaller population-wise (London and Tehran being the largest included). Unfortunately, several vital pieces of the world's immense and oft-times confounding mental health puzzle are overlooked in the information reported starting with the continent of Africa not being represented by a single city report nor the country of China! Another concern is the book's focus on a top-down medical model approach to provision of services with minimal awareness of the viability of recovery, community-based rehabilitation services, or the importance of advocacy or rights of people with psychiatric disabilities. While the conference planners and the proceedings note the importance of users being involved in workshops as a part of the conference, we found that their comments are primarily segregated within Chapter 13 which is devoted to their messages - all of five pages, by far the shortest chapter in the book. These omissions signal the effort falling short of its intended comprehensive scope. However, there is much in the monograph that is interesting in the particular instances of each city's efforts to gather the local forces to forge a tableau of viable mental health policies, services, and proactivities. In addition, there is much to compare and contrast in the open-ended conglomeration of approaches in the way each city reported its stories and statistics. For example, only three cities - Verona, Madison, and Baltimore - reported having much in the way of psychosocial rehabilitation services or peer self-help services firmly in place. Also, Chapter 14, Overview and Emerging Themes, captures some sense of the complexity and difficulty of trying to distill the information presented into generalizable purposes for use as a background to improve mental health policies and practices in the city in which you live, whether now or in the future. Gottheil, Edward, and Stimmel, Barry, eds. Effects of Substance Abuse Treatment on AIDS Risk Behaviors. Binghamton, NY: The Haworth Medical Press, 1998, 142 pages, $39.95 hardcover, $24.95 hardcover text (5+ copies). Reviewed by Betsy Johnsen, AIDS Legal Referral Panel, San Francisco, CA. The vast majority of research on addictive diseases deals either with their causation or with treatment outcomes. Some also study the effects of substance abuse on other public health problems. But no current methodology exists to study how the treatment method itself affects public health. This book looks at that issue in the context of covering one of the most intractable public health problems: HIV and AIDS transmission. The lack of research means that few epidemiological tools exist to encourage new studies and comparing data secondhand from other studies is difficult. This book's editor, Dr. Edward Gottheil, and the authors of the seven papers printed here have begun creating a valuable tool to assess HIV risk prevention. First, the authors offer necessary background on how different drugs and their usage patterns change the risk of contracting HIV/AIDS. Popular opinion and most statistics I have seen only relate drug-related HIV/AIDS transmission to intravenous drug use, usually with opiates or methamphetamine. But the risk of getting HIV also increases markedly with using drugs that stimulate sexual activity, often leading to extremely unsafe sex. But, besides which drug is taken, the location of drug use also affects risk. Do IDUs share needles in shooting galleries or only with friends and family members (an unfriendly concept in itself)? Is a sex worker the basis of risk? Demographics of the drug abuser, whether a minority or whether in a rural setting, for instance, also matter when considering HIV transmission risk. With such a wide range of contexts, primary treatment outcomes themselves are difficult to compare. What works in New York may not work in Fresno. But comparing risk reduction is even more difficult. Here the book makes an outstanding contribution as the authors start to develop the epidemiological tools to study these comparisons. This book is important for researchers who directly study treatment modes and their impact on risk reduction. But it also will interest those who are establishing research projects on primary objectives of decreasing drug abuse. There are several surprising examples of how the primary and secondary effects of treatment may differ. Sex workers who go through treatment may not decrease their amount of drugs, but are among the most receptive to decreasing HIV transmission risk. Other examples exist where similar drug abusers have a wide range of risk reduction depending on the mode of treatment. The authors hope this book will stimulate others to consider these factors when designing future drug studies. Huber, Jeffrey T., and Gillaspy, Mary L. Encyclopedic Dictionary of AIDS-Related Terminology. New York, NY: The Haworth Information Press, 2000, 252 pages, $59.95 hardcover, $24.95 softcover. Reviewed by J. Gary Linn, Ph.D., School of Nursing, Tennessee State University, Nashville, TN. As we enter the new millennium, the HIV epidemic continues to expand worldwide. Over eleven million deaths can be attributed to AIDS since it was first diagnosed over twenty years ago and there are currently about forty million people who have the virus with an estimated 16,000 new infections occurring per day. Even in the United States, which annually budgets hundreds of millions of dollars for HIV prevention programs, the number of new infected persons remains constant at approximately 40,000 per year. In the past six years, deaths from AIDS have slowed in countries with wide access to the new antiretroviral therapies, but neither a cure nor an effective vaccine is on the horizon. The nomenclature related to the acquired immunodeficiency syndrome (AIDS) and the human immunodeficiency virus (HIV) continues to grow as a function of the rapid production of information about the epidemic. Together with existing scientific terms, the pandemic has generated its own language. The purpose of this book is to specify commonly accepted definitions for the various words and phrases used in discussions of the interdisciplinary facets of the pandemic. Since HIV/AIDS encompasses medical, legal, social, psychological, and religious issues, the complexity of the verbiage associated with it is increasing. The Encyclopedic Dictionary of AIDS-Related Terminology offers an alphabetical list and definitions of key words, names, and phrases frequently found in discourse about HIV/AIDS. The compendium includes abbreviations, acronyms, historical phrases, medical terminology, pharmacological therapies, leading organizations and institutions, and AIDS illness-specific sources of information. Anniversaries, case studies, telephone numbers, and web sites are offered if appropriate and available. Because HIV/AIDS touches on many complex issues from a wide range of disciplines, and, given that the epidemic is in a continual state of change, this book should not be seen as a complete listing of all terms, sources of information, and organizations related to the epidemic. Alternatively, it should be viewed as a description of the typical verbiage included in discourse of AIDS and HIV. While Huber and Gillaspy's dictionary should satisfy the layman or generalist searching for concise definitions of important HIV/AIDS associated terms, it may disappoint the medical or health profession specialist in search of in-depth explanations. For instance, highly active antiretroviral therapy (HAART), which over the past six or seven years has revolutionized the treatment of AIDS, receives three terse lines. This work would also benefit from a subject index despite the alphabetical listing of terms. Nevertheless, Huber and Gillaspy's book is a very useful tool for individuals beginning to work in clinical, social service, research, and/or education roles related to HIV/AIDS.
Krentz, Christopher, ed. A Mighty Change: An Anthology of Deaf American Writing, 1816-1864. Washington, DC: Gallaudet University Press, 2000, 276 pages, $45.00 hardcover, $24.95 softcover. Reviewed by Douglas Baynton, Department of History, University of Iowa. Gallaudet University Press recently inaugurated a new series, Gallaudet Classics in Deaf Studies, with the mission of returning to print historically significant writings on Deaf culture. In this second publication in the series, Christopher Krentz has gathered original writings and speeches by deaf Americans beginning with Laurent Clerc's 1816 journal entries during his voyage to America to co-found the first permanent school for the deaf in the United States and ending in 1864 with John Carlin and Clerc speaking at the dedication of the National Deaf-Mute College (now Gallaudet University). As the title of the book reminds us, quoting a deaf man in the 1860s, this was a period of a remarkable and "mighty change for deaf Americans." The collection is modest in its range with the writings of about a dozen deaf people selected for their literary qualities as well as their historical significance. As Krentz points out in his introduction, the writers represent only that minority within the deaf community who find written English a congenial mode of expression. Nevertheless, there is gold here for anyone with an interest in deaf history. Having in one place the extraordinary 1850s debate between J.J. Flournoy, Edmund Booth, and others on the question of whether deaf Americans ought to seek the establishment of a deaf state is worth the price of the book in itself. In addition, Krentz has written a fine introductory essay to put the selections into historical context, as well as a brief introduction to each chapter, and textual notes to elucidate obscure references or to elaborate points of interest. Teachers of Deaf or Disability Studies will find the book useful for their undergraduate courses and no scholar of Deaf history or literature will want to be without a copy on the shelf. Leavitt, Ronnie Linda, ed. Cross-cultural Rehabilitation: An International Perspective. Philadelphia, PA: W.B. Saunders, 1999, 425 pages, $41.95 softcover. Reviewed by Sheila Saravanabhavan, Ed.D., Virginia State University, Petersburg, VA. With disability existing in all societies throughout the world, the need for greater cultural competence and cultural proficiency among health educators and health practitioners is crucial. This book argues for an emerging subspecialty within the fields of rehabilitation medicine and medical anthropology -that is, the field of cross-cultural and international rehabilitation. The strength of the book lies in its embodying philosophy - the shift from ethnocentricism to cultural pluralism which is the order of the day. It is no longer feasible to work within one's cultural milieu. The time is here and now for health educators and health practitioners to develop an awareness of the macro- and micro-cultures in which their clients live, and to learn the skills needed to interact with the culturally and linguistically diverse client population. The emphasis on cultural pluralism makes it imperative for rehabilitation professionals to share a knowledge base about the sociocultural domains of their clients. The purpose of the book is to provide in a single volume a comprehensive overview of the issues of cross-cultural rehabilitation. This is successfully achieved within the five sections of which the book is composed. The contributors to the book come from various disciplines across the world making the volume truly international and cross-cultural. Each author informs, convinces, and encourages the use of cultural competence by health educators and health practitioners. Section One, The Theoretical Basis for Developing Cultural Competence, focuses on cross-cultural attitudes toward individuals with disabilities and on the need to understand cultural perspectives in order to achieve a more successful therapeutic outcome. Section Two explores topics that facilitate readers' appreciation of the practice of cross-cultural rehabilitation and research related to it. This section incorporates a vision for the future as it introduces a universal model of disablement that can be applied across all cultures and social systems. Section Three offers insights into disability and/or rehabilitation across different cultures in the world. The section includes ethnographic case reports and personal narratives and it discusses how disability is perceived in different cultures and how the identities of individuals with disabilities are influenced by the specific contexts to which they belong. Hence, knowledge of sociocultural environments is an essential component of effective rehabilitation services. Section Four provides examples of qualitative and quantitative research that can aid in the development of cultural competence by increasing the understanding of particular populations. Section Five is a fitting conclusion to all the ideas discussed in the previous four sections. This section suggests specific ideas and approaches to facilitate cultural competence and it highlights the theme of this publication: that the concept, nature, and experience of disability is rooted in culture. When disability is viewed within a sociocultural context there is raised consciousness on the part of the rehabilitation professionals to provide more meaningful services to individuals with disabilities. A special feature in the book deserves mention. On the left hand side at the beginning of each chapter, the chapter contents are given highlighting the key points of information. The book is divided into five sections and all of them complement and reinforce the ideas in each section. Evident in all the five sections are compelling reasons why cultural proficiency and cultural competence should be utilized when rehabilitation professionals interact with their clients. The book is one of its kind in an area in which few have been published. The book is a distinct contribution to the field of disability in general and to rehabilitation in particular. The editor's major concern is to emphasize rehabilitation within a multicultural process; in so doing, the individual with the disability is empowered and the professional plays the role of a proactive and sensitive service provider. Miller, Lynda, and Newbill, Chris. Section 504 in the Classroom: How to Design and Implement Accommodation Plans. Austin, TX: PRO-ED, 1998, 126 pages, $29.00 softcover (including 25 copies of Section 504 Planning Form). Reviewed by Valerie F. Lava, Long Island University - Brooklyn Campus, Department of Teaching and Learning. Knowledge of Section 504 of the Rehabilitation Act of 1973 is imperative for anyone interested in providing an appropriate education for all students in general education classrooms. Section 504 is being rediscovered at the same time that the inclusive schooling movement is gaining momentum. Inclusive education and Section 504 are philosophically compatible. Section 504 has long been overshadowed by the Individuals with Disabilities Education Act (IDEA), federal legislation mandating guidelines and procedures for educating students with disabilities. Currently, IDEA is at the core of the special education service delivery system and, therefore, familiar to professionals and families. In their book, Section 504 in the Classroom: How to Design and Implement Accommodation Plans, Miller and Newbill describe Section 504 as largely forgotten, but they advocate for its reemergence to supplement and broaden available resources for students experiencing problems in school. The strength of this book lies in the thoughtful vignettes describing a variety of students who could benefit from a Section 504 Plan. Students with disabilities such as ADHD and learning and behavioral problems, as well as a student experiencing acute depression following the death of a parent, and another who could not concentrate on her school work in the wake of the family's house burning down, were some of the candidates eligible for a Section 504 Plan. The book provides detailed samples of Section 504 plans that specifically address the needs of the students described in the vignettes. The authors' philosophy of educational caring and their emphasis on student strengths permeate the entire book. Diagrams and charts are used to clarify the similarities and differences between IDEA and Section 504. The book is concise and readable, incorporating comprehensive information on the process, policies, and procedures related to the implementation of Section 504. General education and special education teachers, faculty and students of teacher education programs, advocates, school district personnel, policy makers, and students who qualify for Section 504 protection and their family members will be interested in reading this book, if only to "realize the possibilities 504 offers" (p. vii). However, upon reading the book, the possibilities along with the limitations of the statute become glaringly apparent and one may conclude that Section 504 is in need of reauthorization to clarify language and strengthen provisions thereby maximizing its full potential. Peters, Cynthia L. Deaf American Literature: From Carnival to the Canon. Washington, DC: Gallaudet University Press, 2000, 232 pages, $55.00 hardcover. Reviewed by Paul Preston, Through the Looking Glass, National Resource Center for Parents with Disabilities, Berkeley, CA. Addressing skeptics and the uninformed, author Cynthia Peters opens her book by asking: Is There Really Such a Thing as Deaf American Literature? Peters' book not only answers the question with a resounding Yes! - but more importantly critically examines Western literary assumptions that typically relegate non-text sources to incidental or inferior status. Peters surveys a wide range of rhetorical forms and traditions generated by American Deaf authors including works performed in ASL, English texts with Deaf themes, and innovative hybrids of the two. Peters establishes Deaf literature within storytelling traditions of oral cultures (orature). She explores how a fundamentally visual culture, although intrinsically linked to the dominant Hearing world, expresses and invents its own literary canon. Deaf literature is notable not only for its linguistic difference from English and sound-based texts. These works reflect significant cultural aspects of the Deaf community. In contrast to the linearity and fixed nature of most text-based literature (viewed by many Deaf readers as "meaningless, impersonal and lifeless," p. 84), Deaf orature is immediate, interactive, and evanescent, and, almost always, a communal experience. A central image throughout the book is that of the Carnival--face-to-face gatherings that are emblematic of the Deaf community's "transgressions and playfulness, filled with festivity and exuberance" (p. 22). Whether in local Deaf clubs or large national meetings, Deaf gatherings frequently include storytelling in which storyteller, text, audience, and context offer multidimensional and interactive possibilities. The literature of Deaf people forces us to think outside the box so tidily constructed by the majority culture. The limitations raised by dominant literary conventions are not merely of academic interest, but raise fundamental issues about how text- based communication has altered social interaction. As Peters notes, "We have adjusted so completely to reading and writing that they now think differently, approach interpersonal communication differently, and have a different outlook on life than did people who used to rely on face-to-face communication" (p. 19). Peters also considers the implications of technology, notably videotape, which offers wider audiences for Deaf literature, yet at the same time permanently immobilizes the work and encourages isolated viewing and reviewing - ironically becoming more like text-based works. An inherent difficulty with Peters' book is that it is itself an English text-based work recapitulating the very limitations Deaf literature rejects. Her descriptions of ASL stories and poems cannot match the immediacy or vibrancy of the works themselves. Although she recognizes the importance of vernacular Deaf literature, Peters primarily relies upon a smaller canon of more established work by notable Deaf authors. What raises this book beyond the confines of interest to literary scholars is its ongoing discourse regarding cultural and social conventions. Peters' groundbreaking work offers fresh insights that remind us how entrenched and capricious our Western (hearing) values and distinctions really are. Punch, Keith F. Introduction to Social Research: Quantitative & Qualitative Approaches. Thousand Oaks, CA: Sage Publications, 1998, 319 pages, $78.00 hardcover, $25.95 softcover. Reviewed by Marcia J. Scherer, Ph.D., MPH, Author, Living in the State of Stuck: How Assistive Technology Impacts the Lives of People with Disabilities (based on a mixed methods design). For students in the social, human, and health sciences, research methods is typically one of their least favorite courses. After all, their goal is to be helpful and to make a difference, not to crunch numbers. Fortunately, this text is available to make the study of research methods far more palatable. In addition to a down-to-earth writing style, good text organization, and clear definitions of key concepts, this text gives equal weight to quantitative and qualitative approaches to research. And, in Disability Studies, qualitative research has become a very important means of understanding the constructs and concepts defining our field. After introductory chapters on central issues in research, research questions, and the nature of data, the heart of the book is devoted to (a) quantitative research design, data collection, and its analysis and then (b) qualitative research design, data collection, and its analysis. This balanced presentation of quantitative and qualitative approaches is further enhanced by a chapter on the use of mixed methods or a combination of quantitative and qualitative approaches in a single study. The last chapter, Chapter Twelve, provides guidance on writing research reports and papers. A particularly well done section, appearing in the chapter on quantitative data collection, concerns the use of tests and measures. A common question in research is whether to construct an instrument or to use an existing one. The author presents a good description of the steps involved in constructing a measure and addresses the debate over new test construction versus existing test utilization. "On balance," says the author, "we would need good reason for passing over an already existing instrument, particularly if the variable is a central variable in a research area" (p. 97). This is important since there has been a tendency for some researchers to use a combination of parts of several measures. To take parts and assemble them into a "new" whole, aside from the ethical considerations involved in this practice, brings the same problems as starting from scratch: the instrument will have to be pilot-tested and reliability and validity data will have to be obtained. In summary, I highly recommend this text for an introductory course on research methods in Disability Studies. It is balanced, readable, and will have reference value to students as they progress in their research careers. Waterhouse, Stella. A Positive Approach to Autism. London, England: Jessica Kingsley Publishers (Distributed by Taylor & Francis, Inc., 47 Runway Rd., Suite G, Levittown, PA 19057-4700; 1-800/821-8312), 2000, 382 pages, $24.95 softcover. Reviewed by Patrick McDonagh, Concordia University, Montreal, Quebec, Canada. In her foreword to this book, Donna Williams, author of Nobody Nowhere and a series of other books documenting her life with autism and her theories about the condition, writes that Waterhouse's "somewhat anthropological approach" brings her "so much closer to an autistic perspective than can be said for many others" (p. 9). Waterhouse's book is characterized by a consistent modesty quite remarkable in the face of the tremendous amount of information she has synthesized for her readers. Waterhouse has worked in residential care and training for people with autism and currently runs the Alternative Approaches to Autism Consultancy, a responsibility previously held by Williams. But, despite her knowledge and experience, she never seems to be absolutely convinced by her observations and this is one of her main strengths. I do not intend this as a backhanded compliment, but rather as a straight-ahead commendation. Waterhouse is constantly self-reflexive, sharing with the reader her processes of analysis and discovery and all of the attendant doubts. Her approach is professional and authoritative without being authoritarian. Waterhouse takes a broad view of autism, focusing not on symptoms themselves, but on the functional system of autism. In her layered reading, she never adopts a complacent notion of what autism is although she does hypothesize about its possible sources (opioid peptides, perhaps?). But, while she never endorses an absolute foundation, she does identify a common feature that predicates much of what is later perceived as autistic behaviour: anxiety. Drawing on numerous first-person accounts of autism, such as those by Donna Williams, Jasmine O'Neill, and Temple Grandin, she argues that much autistic behaviour is an attempt to cope with an overwhelming range of stimuli which creates an unbearable anxiety. In Waterhouse's perspective, then, such practices as holding therapy, where an autistic individual is held tightly despite her/his struggles, or Lovaas therapy, with its intense focus on modifying the behaviours of the person with autism, are intrusive approaches that often generate more anxiety and, thus, further entrench a defensive response to the world. Facilitated communication, on the other hand, can help relieve anxiety and, thus, is a positive strategy for dealing with autism. Waterhouse centers her text around the role played by anxiety although she does not restrict her interest to this point. Sometimes, the medico-scientific terminology becomes a bit overwhelming. There is a vast army of obscure terms only a few of which are defined in her glossary. There is also, inevitably, a fair bit of repetition as Waterhouse reinforces points made earlier in her book, but these are not serious weaknesses. Waterhouse is also an engaging, likable writer with important things to say to anyone who is involved with autism. Wates, Michele, and Jade, Rowen, eds. Bigger than the Sky: Disabled Women on Parenting. London, England: The Women's Press (Distributed by Trafalgar Square, North Pomfret, VT 05053), 1999, 208 pages, $17.95 softcover. Reviewed by Janet White, Vermont Center for Independent Living. Wates and Rowen's aim in this anthology is to examine the links between disability and parenting. The medical model is rejected as well as the labels that go with it. These labels tend to put us in categories that hide our uniqueness as well as our commonality. Instead, in this anthology, they follow the social model which defines disability as a social construction. In these writings, the editors have chosen pieces with a more holistic approach. They view women with disabilities in a wider context liberating us from the damaging and inaccurate beliefs that we are the problem. Challenging what a parent is and does, they do not accept that it is we, as women with disabilities, who are responsible for the difficulties we face. Woman after woman shows in their writing that the difficulties stem from a social environment, attitudes, and institutional mechanisms that are not designed to accommodate our needs and differences. I wanted to share pieces in this review from so many of the writings, but, with the limited space, decided to go with an overview. These stories come from all over the world and from many different viewpoints. These perspectives challenge and expose the myths and stereotypes surrounding the issue of parenting for women with disabilities. Over and over again, they throw off the weight of other people's assumptions and show women with disabilities as they truly are. Whether it is with self- confidence of a job well done or with all the fear and insecurities they feel at taking on the responsibilities incurred with parenting, these women tell their stories with candor. The editors wanted to encourage women with disabilities to believe in themselves as parents and to show that those who do not parent, whether by choice or by force of circumstances, are equally relevant to this discussion. In this anthology, time after time we see women facing the fear of being who they really are in the face of society's prejudices. In the case of parenting it might mean having your child taken away. There is an excellent piece by Alicia Contreras showing the frequency with which families do not even consider talking to their daughters with disabilities about their sexuality because they do not believe anyone would ever consider them as sexual beings. Is it any wonder that disabled women have to fight for the right to be pregnant? A quote from the back cover of the book: "Whether it be a birth mother, an adoptive parent, a friend or a woman who has made a positive choice not to become a parent, these disabled women are asserting their right to explore the diversity of experience. And in breaking free of society's restrictive definitions and taboos, the writers in this collection demonstrate that the possibilities are limitless." Who should buy this book? Everyone who has contemplated parenting with a disability or just wants to better understand what it is like for women who do. Families and friends should read it, too. It should be in the offices of any medical personnel who work with disabled people, especially OB-GYNs and midwives. It should be in Disability Studies classes. It is informative, heart warming, and, at times, heart wrenching. Wilcox, Phyllis Perrin. Metaphor in American Sign Language. Washington, DC: Gallaudet University Press, 2000, 231 pages, $55.00 hardcover. Reviewed by Claire Ramsey, University of Nebraska-Lincoln, Department of Special Education and Communication Disorders. Wilcox's book analyzes metaphor in ASL, specifically the phonological and morphological structures found in signs that refer to culturally patterned metaphorical statements about the mind, thoughts, and ideas. Be warned that the book is thick going, very dense, and often difficult writing. As the chapters unfold, though, Wilcox outlines a fresh way of examining ASL signs and meaning, repaying the effort. The discussion of ASL tropes (metaphor, simile, and metonymy - or using a part to represent a whole) is fascinating and makes the clearest account of the relationship between iconicity and metaphor I have seen. Also, Wilcox enriches the ASL descriptions with reference to English and the structures it shares with ASL, those that ASL shares with other sign languages, and the meanings that are not shared among sign languages. For instance, English makes use of the metaphor understanding as grasping, as in "Do you get it?" In ASL the verb GET means only the physical act of receiving so it cannot take the abstract metaphorical meaning. ASL, instead, uses the more complex structure "ideas in existence are straight" one instance of which is the extended index finger in UNDERSTAND. Both Catalan and German Sign Languages use the grasping metaphor. Japanese and Cuban sign languages, like ASL, use the straight metaphor. Last, Wilcox offers an analysis of Ella Mae Lentz's ASL poem The Dogs. It is at once linguistic and literary and provides a wonderful example of the interaction of language with culture. If you have ever been skeptical about Deaf Americans' identity as a cultural group, you will find Wilcox's cross-cultural data compelling and convincing. This book is not for the faint- hearted. The theoretical underpinnings are complex and the ASL data, while clear, will be challenging for non-signers. Wilcox has added to our understanding of sign languages and of interrelationships among language, cultural life, and the life of the mind. Winzer, Margret A., and Mazurek, Kas. Special Education in the 21st Century: Issues of Inclusion and Reform. Washington, DC: Gallaudet University Press, 2000, 272 pages, $65.00 hardcover. Reviewed by Beth Franks, Hobart and William Smith Colleges, Geneva, NY. I approached writing a review of Special Education in the 21st Century: Issues of Inclusion and Reform with some caution because every chapter in it supports my personal prejudices regarding inclusion. I was gratified to read arguments in favor of inclusion not only for children with severe disabilities, but also for children with academic gifts. I agreed with the author who discussed technology both critically and optimistically. I found myself nodding in accord when I read that assessment, as it is currently practiced, has little practical value. In addition, the book is written by academics from both the United States and Canada thus bringing an international perspective to the discussion. Winzer and Mazurek have put together a collection of pieces, each dealing with a different aspect of inclusion, pieces that grapple with challenges the movement has generated. The book consists of twelve chapters divided into three major sections, each section introduced by a well-organized, brief description of its contents. Section One explores the context of reform in special education discussing the philosophical theories, judicial background, and research bases undergirding the movement. Section Two examines technology, assessment, and teacher education, areas that can support or detract from inclusion as it is practiced. Section Three (by far the largest) deals with issues attached to particular populations. These include the children who present the most complex challenges to the inclusion movement - children who are gifted and talented, those who are emotionally and behaviorally disturbed, the Deaf and those with residual hearing, the very young, those with the most severe impairments, and those whose difficulties are compounded by language and cultural differences. Most chapters begin with a brief and cogent review, including a history of and background to the subject. On the whole, reviews are informative and not overly technical, but they give the reader a sound foundation for what follows. Many chapters also examine the assumptions behind the topic. For instance, the chapter on assessment takes a careful look at the assumptions behind the categorical approach which the authors describe as defensibly logical, but flawed in practice. Each chapter provides insights to the complexities. The chapter on children who are behaviorally disturbed explains how teachers and students become locked into a negative reinforcement cycle. The chapter on technology categorizes educational software into two types, one that assumes passivity in learners (drill and practice) and the other that asks for creative interaction (word processing, desk top publishing, spreadsheets). And the chapter on multicultural education explains that the movement is contentious because it "brings a new vision of a pluralist rather than an assimilated America" (pp. 243-244). Reviewing a collection of pieces on a topic can become problematic if the pieces have not been carefully selected and/or edited. Readers should expect consistent quality in organization, depth of discussion, relevance, use of research versus anecdotes, and writing. It was in this area that I found myself somewhat more critical of Winzer's and Mazurek's text. Initially, I was confused about the audience for the book. The chapter on teacher training, while fact filled, seemed a call to arms for administrators and policy makers, yet there is little discussion of the underlying assumptions (e.g., the need to recruit minority special education teachers). The first chapter on the inclusion movement is well-suited for graduate students, while the chapter on education for those with behavioral disturbances is useful for practicing teachers. In addition, chapters are somewhat uneven in their presentation of history and background as opposed to an examination of assumptions and practical issues. The chapter on the Deaf was predominantly historical in its focus. I was disappointed that the authors did not grapple with the more extreme positions taken in the debate. The chapter on inclusion for students with severe disabilities relied heavily on decisions made by the courts, the legal basis for inclusion, and the use of paraprofessionals, while the one on multicultural education was theoretical. Perhaps, the above concern is a non-issue. The book's variety certainly adds interest to its reading, and, of course, each topic should be dealt with on its own. The target audience may not be students who are already in a teacher certification program, but students at both undergraduate and graduate levels who are interested in disentangling the issues in which the inclusion movement has become snarled. Winzer and Mazurek do an admirable job in presenting an intelligent, well-organized, interesting overview and discussion of inclusion. The book is easy to read, yet it does not simplify complex issues or sacrifice the amusing use of metaphor for brevity. Authors are not afraid to take strong stands, stands based on logical arguments and a thorough review of empirical research. This is a valuable item for any library, whether personal or professional, and it will serve as an excellent foundation for a liberal arts examination of special education issues at the graduate or undergraduate level. |
Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)