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<B><A HREF="#books"><IMG SRC="smpink.gif" ALT="*"
BORDER=0 HEIGHT=30 WIDTH=30></A><A HREF="#books">Book Reviews:</A>
<A HREF="#film"><IMG SRC="smpink.gif" ALT="*" BORDER=0 HEIGHT=30 WIDTH=30></A><A
HREF="#film">Film Reviews:</A></B>
<H1>Disability culture: a definition
</H1>
<P>
<B>Disability 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.</B>
<P>
<B>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.</B>
<H2>
<A NAME="books"></A><IMG SRC="boyread2.gif" ALT="[image of boy reading]"
HEIGHT=82 WIDTH=71>BOOK REVIEWS
</H2>
<H4>
<I>Dispatches from the Poverty Line:</I> Pat Capponi, Penguin Books, Toronto,
1997
</H4>
<P>
Pat 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.
<P>
You may remember Pat from <I>Upstairs in the Crazy House</I> 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.
<P>
Like <I>Upstairs in the Crazy House</I>, 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.
<P>
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.
<P>
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 <I>Upstairs in the Crazy House</I>, 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.
<P>
<HR>
<H4>
<I>Living in the Labyrinth: a personal journey through the maze of
Alzheimer's:</I> Dianna Friel McGowin, Delacorte Press, New York, 1993.
</H4>
<P>
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.
<P>
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.
<P>
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.
<P>
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.
<P>
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.
<P>
<HR>
<H4>
<B><I>The Careless Society: Community and its Counterfeits</I></B>: John
McKnight, HarperCollins Publishers, New York, 1995
</H4>
<P>
In <I>Careless Society</I> 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."
<P>
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.
<UL>
<LI>
<I>"It was in a small New England town that I first understood the limits
of community services. The town was located in a state with one of the most
human and progressive systems for serving people who are labeled developmentally
disabled. Very few were in large institutions, small group homes had
proliferated, sheltered workshops were being dismantled, and a serious effort
was underway in the schools to bring labeled children into the regular
classrooms. In this town, I was taken to one of the group homes. The home
was physically indistinguishable from the other houses on the street. Living
in the house were five middle-aged men, most of whom had lived there for
nearly ten years.</I>
<P>
<I>It was with considerable pride that an agency director and a public official
took me to visit these men. They wanted me to see how their clients were
"a part of the community" and the beneficiaries of an effective program of
community services. When I had the opportunity to talk to the men, I inquired
about their lives, experiences and relationships in the town. To my surprise,
the response of each man made clear that they had almost no social relationships
with their neighbors or the other citizens of the town. None of them could
identify a close local friend or neighbor, and none were involved in any
kind of organization, association, or club...." </I>
</UL>
<P>
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.
<P>
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.
<P>
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.
<P>
Who do these people turn to if the community doesn't take care of
them?
<P>
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?
<P>
<HR>
<H4>
George Anders, <I>Health Against Wealth: HMOs and the Breakdown of Medical
Trust</I>. Boston: Houghton Mifflin Co., 1996. $24.95 cloth.
</H4>
<UL>
<LI>
<I>This review is copyrighted © 1997 by H-Net and the Popular Culture and
the American Culture Associations. It may be reproduced electronically for
educational or scholarly use. The Associations reserve print rights and
permissions. (Contact: P.C.Rollins at the following electronic address:
<A HREF="mailto:Rollins@osuunx.ucc.okstate.edu">Rollins@osuunx.ucc.okstate.edu</A>)</I>
</UL>
<P>
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 <I>Health Against Wealth</I>, 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.
<P>
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.
<P>
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.
<P>
Mark Siegel<BR>
Phoenix, Arizona
<P>
<HR>
<H2>
<A NAME="film"></A><IMG SRC="films.gif" ALT="*" HEIGHT=70 WIDTH=70>FILMS
AND VIDEOS:
</H2>
<H4>
<I>Towards Intimacy: self-esteem, sexuality and love in the lives of women
with disabilities.</I> National Film Board of Canada, 1992.
</H4>
<P>
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?).
<P>
This video captures the experiences of four women with different types of
disabilities:
<P>
<B>Helen,</B> who has a significant physical disability who falls in love and marries
a non-disabled man. <BR>
<B>Gail,</B> who has cerebral palsy - whose history of physical and sexual abuse
have prevented her from having a relationship and how a support group and
loving partner helped re-build her self-esteem. <BR>
<B>Amethya,</B> who fights for acceptance and rights on two fronts - as a deaf woman
and also as a lesbian. <BR>
<B>Barbara,</B> who has low vision and comes from a native background, faces the
challenge of raising four sons on her own.
<P>
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!!
<P>
<B><I>Skallagrigg,</I> 1993-1994 British Broadcasting Corporation (has
been widely distributed as a film since its original debut).</B></P>
<P>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...</P>
<P>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. </P>
<P>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.</P>
<P>If you want more information about this film write Mark Shivas, BBC,
BBC Centre House, 56 Wood Land, Sheppard Bush, London W12 7SB, England.
<HR>
<H2>
Links</H2>
<P>
See the culture links on our <A HREF="links.htm">links page</A>.
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