Book Reviews:
Film Reviews:
Disability culture: a definitionDisability culture is: pride in being who we are and translating our pride into changing the way media portrays us. It's revelling in sharing common experiences and enjoying the company of one another. It's recognizing the role we have as legitimate members of society and the value of our lives. It's being proud of our history and not feeling isolated. It's buying products developed and sold by other people with disabiities with our symbols on them. Disability culture has its greatest influence when people with disabilities write their own books, do their own research, paint, draw, film, and express themselves through the use of language and image. BOOK REVIEWSDispatches from the Poverty Line: Pat Capponi, Penguin Books, Toronto, 1997Pat is back again - this time taking a whack at Premier Mike Harris's Common Sense Revolution in Ontario and the impact it is having on those who aren't able to fend for themselves without assistance. You may remember Pat from Upstairs in the Crazy House where she chronicled her experiences as a psychiatric survivor in the Parkdale area of Toronto and her struggle to emotionally come to terms with her violent childhood. Like Upstairs in the Crazy House, this book is hard to put down - Pat is a terrific writer who has a unique way of drawing her reader in. This time around Pat talks about what it is like to be suddenly without a job and on the margins of society again at the same time the world is taking a hard line with those who cannot make it. The double disadvantage of being poor and disabled. I'm not sure Pat's book will convince all those Ayn Rand zealots out there to change their ways and become a little more compassionate, but for those of us who have experienced life in all its glory - both good and bad - it certainly rings a cord of authenticity. It reminded me of my own brush with poverty when I was too poor to buy nice clothes and couldn't do a lot of things other people took for granted. I gained weight then as a result of eating cheap food and not feeling too great about myself which seemed to make matters even worse. In this book Pat does the opposite - she loses weight by cutting back her grocery bills in her attempt to save money. She rediscovers what those of us in similar situations have - the generosity of others who are poor and the inherent dignity many people still manage to maintain in a situation that is out of control. Pat's own personal experiences, however, overwhelm her attempt to portray the lives of vulnerable people who are trapped in poverty in this book. Readers take heart: for those of you who haven't read Upstairs in the Crazy House, many of your unanswered questions and desire to learn more about this fascinating mental health care advocate, are addressed in the first, of what we hope will be a long list of many more books which Ms. Capponi writes.
Living in the Labyrinth: a personal journey through the maze of Alzheimer's: Dianna Friel McGowin, Delacorte Press, New York, 1993.We've all heard the horror stories of what it is like to have to take care of a loved one as they grow older. With the greying of our society and the huge number of baby boomers facing the dual prospect of acting as caregivers to relatives who are aging, while at the same time looking into the face of mortality themselves, Alzheimer's has suddenly become a huge topic - and rightly so. The caregiving stories often involve women - who find themselves juggling a family, their career and conflicting emotions of resentment and love in caring for others. Sometimes it doesn't turn out well. With this book we hear for the first time what it like from a "patient's" perspective to "lose it" and know it. Diana is one of those rare individuals who gets Alzheimer's at an early age - 45. Her attempts to pretend nothing is happening while at facing the terrifying reality that things will never be the same, are very moving, and from time to time quite humorous. In a clear, down-to-earth fashion, she talks about how her husband and her children cope with these changes and eventually come to terms with it - albeit unwillingly. What we learn and have reconfirmed is that these folks are still human even though they have Alzheimer's and can still participate in life. The book doesn't stop there: it also offers practical advice and information to those affected by Alzheimer's regarding resources they can draw on. As a result of this gutsy lady speaking out about her experiences, support groups of persons who have Alzheimer's have been established in the United States - and now in Canada - to help consumers come to terms with what is happening to them.
The Careless Society: Community and its Counterfeits: John McKnight, HarperCollins Publishers, New York, 1995In Careless Society John McKnight takes another shot at the welfare state and continues to promote his ideal of a community where people are not paid to "care" for each other, but support each other through true Christian service. As the book jacket itself notes: "McKnight focuses on four "counterfeiting" aspects of society: professionalism, medicine, human service systems, and the criminal justice system. Reforming our human service institutions won't work, McKnight writes. These systems do too much, intervene where they are ineffective, and try to substitute service for irreplaceable care." There are parts of this book that are brilliant - such as his chapter, "Redefining Community" where he talks about the true impact of de-institutionalizing persons with developmental disabilities.
Well - you get the picture. It is insights such as these that have made John McKnight the hero of many people in the community living movement and the inspiration of Citizen Advocacy chapters and "support circles" in North America. Many cost-conscious politicians are also using McKnight's rationale to reduce services, by arguing that we need to care more for each other in our communities. It's hard to argue that point - yes we do need to care more for each other in our communities and many of John's ideas can and should be considered when integrating persons with disabilities into society. But many persons with disabilities who now have to depend on volunteers for vital services are less than enthusiastic about this approach. Volunteers get tired out - and sometimes they just don't show up. Many of us want to be able to go to professionals for health care and other necessary services - we don't want these services to be provided to us out of goodness of someone's heart. In fact, many of us see access to these services as a right - not a privilege. And many volunteers, however well-meaning, don't want to personally "help" people who don't look or act nice (such as street people, people with disabilities that are not pleasant to look at or those who are hallucinating....), even though they may desperately need assistance. Who do these people turn to if the community doesn't take care of them? John's message is about 20 years behind the times - and comes off sounding callous and out of touch with the reality that many vulnerable people with disabilities are facing today. The large and small services he attacks are being eroded at an alarming pace - including services started and run by persons with disabilities themselves. John needs to listen more to the consumer movement of the disabled and integrate the concepts of consumer control and equality right into his ideas and concepts. He needs to get back in touch with the real community of people with disabilities themselves. Are you up to it John?
George Anders, Health Against Wealth: HMOs and the Breakdown of Medical Trust. Boston: Houghton Mifflin Co., 1996. $24.95 cloth.
In this history and analysis of the rise of managed health care in the United States, George Anders not only indicts managed care through a critical examination of the industry's policies and economics, but tells heart-wrenching stories of human tragedy resulting when dollars dictate the bottom line in health care. The indictment comes at a time when managed care -- HMOs (Health Maintenance Organizations) and PPOs (Preferred Provider Organizations) -- is overwhelming traditional and more expensive health care delivery systems in which patients and doctors exercise unfettered choices. (Anders estimates managed care will cover four out of five Americans by 2000.) The strength of managed care plans is their ability to deliver reliable, cost-effective treatment in routine areas of medicine, replacing doctors' visits with call-ins to nurses, ER visits with textbook advice and next-day follow-up appointments. The great vulnerability of such a system, as Anders demonstrates so graphically, is its inability to deal with exceptional cases requiring emergency measures. The structure of Health Against Wealth, which begins with an illustrative medical tragedy, is inevitably convincing and heavily weighed toward the conclusion that the health of Americans is jeopardized by HMO systems that create too many incentives to cut costs by cutting care. Anders recognizes that "managed-care plans have the potential to do a great many things right," ensuring that efficient treatment gets to more people at less cost. Ideally, preventive health care, such as child immunizations, regular mammograms, and annual testing of diabetics, routine in most HMOs, not only lower the over-all cost of health care by eliminating the need for later costly emergency and critical care treatment, but also improve the quality of life for HMO members. But this occurs, he argues, at the sacrifice of the "individuality of each patient," which Anders calls "the dark side of managed care." Thus, an elderly woman hoping to live out her last few months in dignity is pushed into a low-grade nursing home; a man needing heart surgery is steered to a cheap but less reliable hospital; a young woman fighting breast cancer does not get a costly long-shot treatment that is her only hope of survival; a doctor is delayed in fighting an epidemic because dispersal of a necessary but costly antibiotic requires several appeals to the HMO that has declared the drug off-limits. Instead, a new entrepreneurial class of "health Mandarins" becomes wealthy by "saving the system" money. Anders defines the controversy in terms of classic American paradigms: the broader needs of society for more affordable and efficient care versus the right of the individual to protect himself and his family as he deems necessary. This is a subliminal Western. The great strength of this book is that Anders transcends the fixation on cultural paradox by suggesting concrete steps to better reconcile our health care needs with our wants. If employers, consumers, doctors, and regulators become more savvy and assertive, many of the dangerous flaws of the current system can be remedied. At bottom, Anders asserts that, if better prices can be negotiated, so can better care.
Mark Siegel
FILMS AND VIDEOS:Towards Intimacy: self-esteem, sexuality and love in the lives of women with disabilities. National Film Board of Canada, 1992.I keep waiting for the sequel to this excellent video to come out - self-esteem, sexuality and love in the lives of men with disabilities. The trouble is, guys with disabilities just don't want to talk about it - honestly (or do they?). This video captures the experiences of four women with different types of disabilities:
Helen, who has a significant physical disability who falls in love and marries
a non-disabled man. Some viewers felt the film should have dealt with the issues of women with disabilities who never find a partner or issues related to colour - but hey no one's perfect. This makes a good stab at an important topic and is well worth renting from your local NFB outlet - while it still exists. P.S. It is open captioned too!! Skallagrigg, 1993-1994 British Broadcasting Corporation (has been widely distributed as a film since its original debut). This film was shown at the Montreal Film Festival in 1995 in an inaccessible movie theatre, which is too bad because it is a film that many people with disabilities will feel a tremendous connection to. All of the actors in this film who played persons with disabilities appear to have disabilties themselves. There is none of the compelling but phoney "pretend-to-be-a-crip" stuff here. But let me put your mind at rest. This movie is funny, amusing and serious at the same time. The story line goes like this... A young woman in her teens who has cerebral palsy, and a major attitude towards her bumbling father who has had virtually no contact with her for many years, drive around England trying to find the truth behind the myth of Skallagrigg. She brings along some of her friends from the group home, in the van with her who spend a lot of time ribbing the old man, who at first can't understand a word his daughter is saying. They encounter a variety of interesting and colourful people with disabilities who give them a piece of the story about a young man in an institution during the Second World War, who experiences both abuse and love and what happens to him. I won't spoil the surprise for you, but I must say, I had to wonder at the end - that was both delightful and tearful - what happened to the baby? Hopefully, they will do a Skallagrigg 2, which will answer the question. If you want more information about this film write Mark Shivas, BBC, BBC Centre House, 56 Wood Land, Sheppard Bush, London W12 7SB, England. LinksSee the culture links on our links page. |
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