Our subscription to The Disability Rag is supplied to us on disk by 
the publisher, the Avocado Press in Louisville Kentucky. It comes 
in three essentially unformatted text files with a fourth file serving 
as the Masthead and table of contents. These files have been edited 
into one flat text file for readability purposes. 

Other than this READ.ME file, no words have been added, deleted or 
changed, and no editing has been done other than the addition and 
deletion of carriage returns as needed to make a clean look.

If you read this rag regularly, I encourage you to subscribe to 
it yourself. In any case, feel free to distribute this issue to any 
free public forum.

Jesse Tharin
Tucson Prologue  1:300/7
Tucson Arizona USA








The Disability Rag & ReSource
March/April 1994

Disability & Disease
Enemies or Allies

Contents

Letters

Continuum Retort - Part II
by Carol J. Gill

HIV & Disability: Worlds Apart or Worlds Together?
by Jo Bower

Adaptability Is the Key When Disease & Disability Are Combined
by Cindy Neveu

Learning to Use the Systems Helps Achieve Some Control
by Doris Butler

Don't Drink the Water & Don't Breathe the Air
by Marilyn Golden

Sell a Case, Save a Kid?
by Hilary Abramson

The Eye of the Beholder:
Star Drek
by Bill Bolte
Cure Doctors in Space
by Julie Shaw Cole

Update
Eugenics, Reproductive Technology, etc.

ADA Court Victories

Ed Hudak Dies

Ragtime
The Other Callahan
by Barrett Shaw

Views of Ourselves
Deception: The Most Disabling Disease
by Kathi Wolfe

Like Walking on the Moon
poem by Nancy Scott

Now and Then Again
poem by Susan Hansell

Reading
Health Care
by John R.Woodward
CFS
by Sharon Kutz-Mellem

Ragland
More Changes
by Sharon Kutz-Mellem

What?

We wish we wouldn't see . . .



Publisher: The Advocado Press, Inc.
Editor: Barrett Shaw
Managing Editor: Leigh Sahiouny
Poetry/Fiction Editor: Anne Finger
Recording: Tom Karne
Administrative Support: Mary Anne Ostertag
Volume 15, No. 2, March/April 1994.
Copyright 1994 by The Advocado Press, Inc. (ISSN 0749-9596).

Materials submitted for publication cannot be returned unless accompanied by a
stamped, self-addressed envelope.

The Rag reserves the right to edit all materials.

Send submissions and letters to the editor, as well as subscriptions and
circulation inquiries, to our editorial office in Louisville.

Editorial office: The Disability Rag
Box 145, Louisville, KY 40201
Circulation and subscription office: The Disability Rag, 1962 Roanoke Ave.,
Louisville, KY 40205

Indexed in the Alternative Press Index (Box 33190, Baltimore, MD 21218-0401).
Available on microfilm in the Alternative Press Collection of
UniversityMicrofilms, 300 N. Zeeb Rd., Ann Arbor, MI 48106. 





Letters

Quotable?

I am writing about an article in the November/December Disability
Rag by the title of "Rethinking Accommodation." The article was
written by John R. Woodward who is identified as a counselor in
an I.L. Center and a freelance writer. His article identifies
many ongoing issues relative to the accomodation of people's
needs who have disabilities.

One example he included involved the Maine Head Injury
Foundation, one of its members, Pat Felton, and its Executive
Director, Nancy Chase. I work frequently with the Main Head
Injury Foundation, some of its Board Members and its Executive
Director. When I received my copy of The Disability Rag and saw
the incident portrayed in its pages, I made a copy available to
Nancy Chase. At that time, I learned that Nancy had never been
contacted by Mr. Woodward.

The lie included in The Disability Rag puts in question my use of
The Disability Rag for a number of purposes. In the past I have
recommended The Disability Rag to people as a way to have their
beliefs and assumptions confronted. I always use the disclaimer
that I do not agree with the opinions expressed in The
Disability Rag but they will make you think. Now I discover that
I will have to make another disclaimer. Not only may I not agree
with the opinions in The Disability Rag but I now understand that
the "facts" are not factual. They seem to be some combination of
conjecture and innuendo.

Perhaps The Disability Rag should never stray from the simple
editorial. This effort at reporting facts and quotes draws into
question the very essence of your magazine as a resource for
information.

At this point, I will continue subscribing to The Disability Rag
but I will certainly not use it in the manner I have in the
past.

A much disappointed reader,

 DALE FINSETH
 Chief Executive Officer
 Maine Independent Living Services, Inc.
 Augusta, ME




I am compelled to respond to the article "Rethinking
Accommodation" in the November/December 1993 issue of The
Disability Rag.

In regards to John Woodward, author of the article, his
professionalism and credibility are highly questionable. In his
article he stated that I declined to be interviewed and then
proceeded to include a quote from me regarding Pat Felton. First
of all, I never declined to be interviewed because I was never
asked. Secondly, I have never talked with John Woodward nor made
any observations to him regarding Pat Felton or anyone else. And
third, I have never made the statements quoted to anyone.

If the misleading and erroneous information in this article is an
example of other articles in The Disability Rag, then your
credibility is non-existent.

 NANCY CHASE
 Executive Director
 Maine Head Injury Foundation
 Augusta, ME



John Woodward replies:

I contacted Ms. Nancy Chase in April of 1993, after I had
interviewed Pat Felton, and explained to her the nature of the
article I was writing: a study of the difficulties people with
certain disabilities have getting accommodated in disability-
oriented meetings and events. Ms. Chase declined to be
interviewed; however, she made the observation that I quoted 
"Pat was generally appropriate in the [MHIF] meetings, and I
think she gained a lot from her association with MIHF." Since I
was already "on the record" as having identified myself as a
journalist researching a story, I felt justified in using her
quote, especially since it was (I believe) extremely provocative
and revealing. Perhaps she no longer remembers our conversation.
I doubt that Pat Felton will be able to forget the insult so
easily.




Union, agencies not the same

I was very pleased to see Marta Russell's articles on the
California program in Disability Rag (November/December 1993).
As past President of Center for Independent Living in Berkeley,
member of Alameda County's Long Term Care Planning Commission,
Alameda County's IHSS Reorganization Work Group and an IHSS
recipient I am intimately concerned with how personal assistance
services are provided in this state.

The articles, however, seem to proceed on the assumption that the
IHSS program, as it exists in California, is ideal. I agree that
consumer control of Personal Assistant Services should always be
the foundation of any program (the bottom line is everyone
should be able to choose who touches their body, period). I also
agree that in most cases California's IHSS program is better
than PAS programs in other states, but that doesn't mean that
the Independent Provider mode is the only method that guarantees
consumer control or that there are not alternate methods that
could provide additional PAS services while maintaining consumer
control.

Californians have suffered from many wrong headed limitations in
the IHSS program. For example, the maximum hours available to
recipients is approx. 280 hours a month; if more is needed a
recipient can be institutionalized (although it would be cheaper
to maintain an individual in their home even with 24 hour
attendant care). Wages for attendants are capped at minimum wage
and workers get no benefits. There is no emergency attendant
service or programs to transition from institutional care to
independent living. Also, there are no provisions for the small
number of people who may need help managing their attendants,
either temporarity or permanently.

Senate Bill 35 may give us the opportunity to address these
limitations and ward off what I see as the systematic, county by
county "buying up" of our consumer control by health care
agencies like National Homecare. Right now, National is buying
exclusive contracts with counties to provide PAS and providing
inferior service to people with disabilities. The threat to our
independence is clear.

Ms. Russell equates unionized PAS workers with the threat from
agencies. I just don't see the correlation. Agencies want to
monopolize PAS so they can dictate to consumers how it is
provided. This way they can make more money by cutting attendant
hours and pocketing the "savings." Unions just want someone they
can collectively bargain with for better wages and benefits,
something we all want. The threat of strike is a concern, but we
already lose several good attendants in any given year. Not
because the attendants want to quit, but because they can't make
a career of a minimum wage job.

A public authority can advocate for expanding services under
IHSS. It can work for higher wages and benefits (which would
solve a big problem with IHSS right now: availability and
retention of attendants). It can assure that consumers retain
their rights to hire, fire and direct our own attendants. What
the Disabled community must do is control the makeup of a public
authority, make sure it is controlled by individuals with
disabilities who use attendants. Not a "consortium of non-
profits" who say they know what we need. There is big money
involved here and if we insist on hanging on to old ways we are
going to find ourselves in an institution in our own homes.

 GUY W. THOMAS
 Berkeley, CA




The California Foundation for Independent Living Centers (CFILC)
has been a statewide coalition and advocacy group representing
Independent Living Centers for years. On behalf of our
leadership and the 26 members throughout the state, I would like
to paint a more complete and fair picture than presented in
"California Scheming" (November/December 1993) regarding our
involvement at the state and federal levels to improve
California's vital, In-Home Supportive Services (IHSS) program.

The strengths of ILC's include the fact that people with
disabilities represent at least a majority of each board of
directors and a large percentage of paid staff. These nonprofit
corporations receive public and private funding to assist people
with the whole range of disabilities in being productive and
independent in their local communities.

In the real world, each ILC is in touch with current and past
consumers of IHSS and Personal Assistance Services every day.
These consumers have always been involved and their recom-
mendations incorporated in CFILC's statewide advocacy goals and
objectives.

Since 1986 with the enactment of S.B. 412, which made
California's social model IHSS program a "capped entitlement,"
CFILC has been an active player in shaping public policies and
funding for this program.

Since the mid-'80s, Burns Vick has been a self-employed public
policy consultant to our coalition. Further, he has consulted
with a number of groups in the disability, aging, mental health
and rehabilitation fields. His ongoing service to CFILC predates
his recent agreement to consult to the Service Employees
International union (SEIU). The extent of his contacts plus
knowledge of the IHSS program made him the logical person to
bring together a broad-based coalition of allies to design a
public authority/registry for L.A. County. After scrutiny,
CFILC's leadership determined there was no "conflict of
interest" between his work for CFLIC and SEIU. In reality, we
have examined SEIU's activities and found no instance, to date,
in which this union's interests (regarding IHSS) differ from the
interests of people with disabilities.

It is important to know, also, that long before Mr. Vick's
special project in L.A. County, CFILC's statewide leadership was
involved in supporting legislation to create the option for a
public authority/registry. Why? Simply put, this approach will be
consumer-controlled, has the potential to resolve serious
problems with the status quo and will not require cutting
consumers' hours of service to pay for the registry and program
improvements!

The author characterizes ILC's and SEIU as the bad guys with a
vested interest in taking over the IHSS system for corporate and
personal financial gains. She fails to report thhat it was the
ILC's who advocated successfully for the restoration of the 1992
cuts to the program. CFILC and its policy consultant also spent
considerable time in 1992 and 1993 to ensure the Medicaid
Personal Care Option was implemented in keeping with the
integrity of California's "Social Model." It was the ILC's who have 
perusaded boards of supervisors to resist the siren song of the 
capitated/contract mode. Additionally, it was we (and our allies)
who fended off 1993 efforts to cut the program in the heat of the
budget crisis.

Where were the author and members of the recently-formed
"consumer alliance" during these struggles? We in the
independent living movement needed allies to realize these
successes, And, clearly, CFILC could not have been successful in
its advocacy without SEIU!

Finally, and worst of all, is the author's characterization of
people with disabilities as weak, defenseless and at the mercy
of the powerful unions. This is the kind of "pity approach"
which is most damaging to perpetuate.

People with disabilities - individually and in coalitions with
their advocates and allies - have exceptional strength in
numbers. We must seek out and capitalize on relationships with
people sharing our values and supporting our public policies.

Clearly, the more division we have, the more vulnerable we all
are. I challenge each reader to double his/her advocacy efforts
on behalf of all people with disabilities and become
meaningfully involved in educating and informing your elected
officials and their staff about your preferred public policies
for Californians with disabilities.

 ELDON LUCE
 President, CFILC
 Sacramento, CA



Marta Russell replies:

SEIU officials have reported that Vick has been removed from the
L.A. County Coalition activities.

IHSS Consumer Alliance has uncovered some significant flaws in SB
485, which the Alliance has forced into the debate. There is no
language in SB 485 which would prevent capitated/contract
corporations from operating in conjunction with Public
Authorities or which prohibits PA's from contracting with them.

Luce claims that a Public Authority will guarantee consumer
control, but SC 485 calls for the creation of an "advisory"
committee composed of 50% past or present IHSS consumers, not a
51% majority. This "advisory" committee has no enforcable
authority or mandate to reform IHSS.

Much of the abuse disabled persons suffer comes from their
attendants, Sen. Robert Dole has put forth a federal bill that
would make criminal background checks mandatory for PAS (omitted
by CFILC's "Registry"). The SEIU has made no effort to screen
its attendants for criminal activities nor does it have any
policy that would remove an abusive attendant from its
membership or registry if reported by a consumer.

Nor can Luce guarantee that registry and program "improvement"
costs will not be met by cutting into consumers' hours of
service. The broke counties will be forced to absorb any wage
increase as the state has refused.

We should have known better




What?! What were y'all thinking about? A full-page Ad with a
coffin as the image for HIV infection (January/February 1994)?
In The Rag? You know better!

In my general law practice, I get to work with all kinds of
people. Some have been people with HIV and AIDS. On occasion,
they want help with dying issues, like Wills and health care
powers of attorney. More often, their problems have been problems
of living  employment discrimination, insurance problems,
getting social security when the need comes.

A central struggle for people with HIV is the struggle we Rag
readers share: the struggle against fear, melodrama, and all the
stereotypes that isolate us from the common experience of being
human. Most people are afraid to face the fact that a coffin
awaits us all, and not just "those people" with AIDS. Our culture
draws lines between the Living and the Dying, to avoid accepting
the reality that every person is both living and dying at every
moment of existence. Pariahs are created as a shield against
mortality. We understand what's happening when Jerry Lewis plays
this game with muscle diseases. Dear, dear Rag, how could you do
the same thing people with HIV?

I presume you knew this Ad would be harmful to the everyday
struggle of the many people who live with HIV and AIDS. So I
presume you concluded the end  promoting condom use  justified
the means. I don't think so.

Scare tactics rarely change behavior in a constructive way. In
fact, they are counterproductive. In order to promote condom
use, we need to get across the idea that people with HIV look
like everyone else, act like everyone else that you or your
lover could have HIV for months or years without even knowing
it. Scary Ads widen the psychological gulf between "regular"
people and people with AIDS. Somehow, condom use needs to become
routine, no big deal, nothing dramatic. If we continue to fuel
AIDS-terror, using condoms (or requiring your partner to use
them) will remain charged with negative emotions  a reminder of
deep fears, a sign of mistrust. People will continue to take
their chances rather than introducing these elements into a
sexual relationship.

It is vitally important that we provide people with the
information and the power they need to make choices about condom
use. But we must recognize that many people will continue to run
risks we consider unwise, and that some will become infected. As
disability rights advocates, we must not fall into the trap of
blaming them  "You shoulda used condoms!"

Instead, our job is to break down the bogus division of human
beings into categories of Living and Dying. We must fight for
the precious dignity of every life, long or short, sick or
healthy. I will be picketing for that principle on Labor Day. I
have a muscle disease but I also picket for people with HIV.
 
 HARRIETT MCBRYDE JOHNSON
 Charleston, SC

P.S. Aside from this monstrous Ad, the latest issue was
absolutely marvelous.





Hey, Rag:
Are you for real?! On page 39 of your Jan./Feb. issue we were
appropriately appalled at the image of a young woman, held in
s&m-style bondage, pitifully unable to hold her infant, a
"victim" of MS and/or of sexual exploitation. Then we turned the
page and were similarly appalled when confronted with what at
first sight appeared to be another "wish we wouldn't see" ad, an
equally manipulative, equally exploitative image -- an open
coffin -- designed to scare people into using condoms to prevent
AIDS.

Are such scare tactics justified because their goal is to save
lives? Isn't this ad very similar to those ads, which The Rag
condemns, that show a wheelchair to scare people into using a
seatbelt or refraining from drinking and driving? Why is it okay
to reinforce the stereotype of people with AIDS as tragic
victims when we so strongly reject that stereotype for
ourselves?

Let us remember that people do not just die of AIDS, they live
with AIDS. Just like we live with our various disabilities, some
of which might ultimately result in death. Persons living with
AIDS have to deal not only with its physical consequences but
also with the discrimination, the prejudice born of ignorance,
that all of us, persons with disabilities, know so well. And
somehow, they also have to deal with the likelihood of imminent
death. Do you think it helps persons living with AIDS to see this
ad? Do we need to remind them or ourselves that our society
considers death the ultimate tragedy (to some people preferable
only to being a cripple)? Wouldn't it be better to spend our
energy trying to remind ourselves and each other that death is
merely the inevitable end of life, and that life is precious
under all circumstances, meant to be lived with dignity until
the moment it is over?

We applaud efforts to foster the practice of safe sex. But there
are certainly better ways of selling condoms. We really wish we
wouldn't see this kind of ad anymore. Especially not in The Rag.


 NADINA LASPINA
 DANIEL ROBERT
 Disabled in Action of Metropolitan New York




Natural allies

Is The Rag really serious in listing (January/February 1994) the
question of "Avoidance of the medical model vs. alliance with
people with chronic illness" as a "topic to be explored in the
upcoming March/April issue?

How can there be any question whether disabled people should
align themselves with the chronically ill? Some disabled poeple
are chronically ill from disabling diseases such as MS. Even
healthy disabled people face the same problems as chronically ill
people  problems of access, discrimination , and pressure to die
"with dignity," as if having a less than perfect body deprived
one of human dignity.

The moral force of the disability rights movement is dependent
on the movement's not turning its back on the chronically ill in
order to avoid the stigma of the "medical model." Far better for
disabled people to unite with the chronically ill in combatting
the offensive aspects of the medical model (doctor knows best,
etc.) for both groups.

 FELICIA ACKERMAN
 Providence, RI

End of letters





Continuum Retort -- Part II

By Carol J. Gill

In our January/February 1994 issue, we printed a letter to the
editor from Carol Gill, president of the Chicago Institute of
Disability Research. In it she objected to a statement used on
an Advocado Press fundraising appeal last year: "Disability is a
continuum on which we all reside." We had to admit that her point
was well taken and asked her if she would expand on it. The
resulting thinking led to more questions than answers, and we
hope they will get some good discussion going. - ed.

Continua are in fashion these days. The farther we drift away
from each other in society  the more that classism divides us
and violence tears us apart  the more some people seem
determined to project unity, or at least continuity, onto
humankind. I don't believe this "reframing" of reality helps
anyone. It trivializes the experience of us who must face the
cold facts of marginalization while it ignores the value of our
different experience.

There's a concept in statistics called "regression toward the
mean." It says that measurements tend to cluster toward the
average or middle. Anything extreme is unlikely to be repeated.
For example, if my average time of swimming a lap is 40 seconds
but one day I have an incredibly short time of 25 seconds, all
factors being equal, my next time is likely to be longer 
closer to average.

Sometimes I think human preference is ruled by this law of
probability. Many people are distressed by the unusual. They
want it normalized, brought to the middle where they are. In
fact, it's the rare person who feels perfectly confortable with
anything discrepant from her/his realm of familiarity.

I think this tells us a lot about the continuum-seekers. They
need someone to tell them it's all a bad dream, that there
really are no discrete differences between people or their
experiences of life. They like hearing that what's important is
that we're all part of the same human family. This takes away
the confusion, loss of control and untidiness of genuine
diversity. It eliminates both the tension of admitting you may be
unable to completely understand someone different and the
"stretch" of accepting their culture as valid anyway.

True confessions: I am an ex-homogeneity-junkie, myself. In
college I rhapsodized over constructs like brotherhood and
fellowship (not yet seeing any gender considerations there!). It
served me twice to idealize unity. First, it seemed like the path
out of my own mar-ginalization, i.e., disability would be
insignificant in the universal family. Second, it made it so
much easier for me to accept poor people and gays and
cultural/racial minorities if I could simply imagine they were
all like me under the skin. I wanted to believe differences were
illusory. Along with many other pubescent idealists, I longed to
dump the melting pot into the Cuisinart and make a pablum smooth
enough for me to swallow.

But my Black and gay and Jewish friends refused to go gently into
that good blender. They insisted on being exactly what they were
(and letting me know exactly what I was!). I got over the
rejection and disillusionment to learn that it wouldn't kill me
to be tense over differences. I even learned that I could be
enriched by cultures I didn't understand, cultures that didn't
exist for my enrichment. I learned that both the world and my
own mind were big enough to encompass messy, noisy heterogeneity
 that people didn't cease to exist as human beings because they
didn't resemble me, that I could interact with them without
pulling them toward the middle. I could appreciate separate
colors without needing them to be my rainbow.

When I was growing up, my father frequently talked about a man
that he worked with who came from Japan. He really liked this
man. He would visit the guy's house and then come back and tell
us all the ways he was different: the foods he ate, his
furnishings, his clothes, the way he counted on an abacus, the
way he reasoned about life. My father's worldview was enriched
by his association with that friend. His accounts conveyed
tremendous respect without ever needing to find ways the man was
similar to us.

Respect is a key concept in accepting differ-entnesses. Many
years ago, I was sitting on a stage with Judy Heumann and an
interviewer asked us what we found most disturbing about others'
attitudes toward us. Judy said she most resented their need for
us to be nondisabled. I'm ashamed to say I didn't totally get it
then, but I do now. There is a great lack of respect for who I
am as a disabled person conveyed by people who either wish I
could be normal or who need to see my disability as an
unimportant part of me.

So when is a person disabled and not something else? I tend to
think you're disabled when society says you're disabled. I agree
with activists who believe that "disability" is mostly a social
distinction  one that is triggered by some
physical/sensory/mental/functional/cosmetic difference. How much
of a difference is significant enough to count as a disability?
That's usually decided by the majority culture tribunal. What is
barely noted in some cultures can be a great stigma in another
(e.g., being born with a missing digit). In sum, I believe
disability is a mar-ginalized status that society assigns to
people who are different enough from majority cultural standards
to be judged abnormal or defective in mind or body.

There seems to be an underlying social requirement that in order
to qualify as a disability, the defect must lie beyond the
individual's immediate control. Maybe by working hard, the
disabled person can improve, but not too easily. If persons can
control their impairment at will (occasional recreational drug
use; charley horses) they are not seen as disabled but as
"bringing it on themselves." However, if they are unable to stop
hurting themselves, they may be seen as disabled (someone with an
addiction). Similarly, if they "brought it on themselves" but now
can't reverse it, they are disabled (someone injured via driving
drunk).

Although I am emphasizing society's role in determining
disability status, I am not suggesting that, in the socially
ideal world, all physical, mental and sensory conditions would
be irrelevant or unnoticed. I am not a complete environmentist or
cultural relativist on this score. Many people who are
considered disabled now would still have an experience of
"differentness" in a more accessible and socially accommodating
world. I believe I would be one of them. I would still experience
struggle, pain, slowness, and things I couldn't do the way most
people could (e.g., run spontaneously) even if I had all the
human and technical help currently imaginable. (I admit my
imagination is limited  I don't know if something like virtual
reality, for example, would be the ultimate leveler of
experience.) Further, I would still have a disability history or
heritage behind me affecting my worldview. No, you can't take
that away from me.

But in the ideal world, my differences, though noted, would not
be devalued. Nor would I. Society would accept my experience as
"disability culture," which would in turn be accepted as part of
"human diversity." There would be respectful curiosity about what
I have learned from my differences that I could teach society.
In such a world, no one would mind being called Disabled. Being
unable to do something the way most people do it would not be
seen as something bad that needed curing. It would be seen as
just a difference. Differences might make you proficient in some
contexts, deficient in others, or not matter at all. For
example, if I can't run, I might be an inferior messenger if
time is critical. However, my inability to run might just as
likely have stimulated me to address time more creatively or to
develop ways to send messages swiftly that are as efficient as
running, or vastly superior. In other words, ideally, even if I
had a difference that might hinder me in some contexts, I
wouldn't be judged generally deficient because a recognized
feature of Disability culture would be the fact that such
limitations can be fodder for innovation and for a rich and
valuable human experience. Once again, respect.

Returning to the present would, given my understanding of
disability as a social status, what about people who say they
are disabled but society does not so label tham? What about
things like alcoholism, chronic fatigue, compulsive behaviors?
Conditions like these seem to be judged by society as either too
indignificant or too voluntary to be real disabilities. Consider
also the borderline conditions, like eyeglasses, limps, the
fingertip lost in a factory accident, the gradual hearing loss
with age, the so called slow learner at math. These are the
differences most people downplay out of embarassment or fear of
social devaluation. They are also the differences some pull out
of their back pockets when they want to prove that there is a
continuum of disability or if they have something to gain from
being disabled  a parking space, priority treatment, a place of
power in a disability organization. Are any of the above
disabilities? (The terrain is looking a little gray, but since I
started the discussion with my own thoughts, I'll humbly
continue  hopeful that readers will understand that I'm just
taking a stab at an analysis that I think is important to
continue through others' responses.)

I would say that it's possible to have a disability without
society's agreement. Society may simply be too ignorant about
some disabilities to include them in the classification. If the
public knew how "debilitating," involuntary, and physiologically-
based such conditions as alcoholism and chronic fatigue were,
it's conceivable these would be viewed more generally as
disabilities. The critical issue seems to be whether they affect
life functioning or are weird enough by society's standards that
they would be labeled disabilities once they were fully
revealed. Anything potentially labeled as a disability by
society is a disability, in my book.

But I have met people whose claim to disability truly annoyed me.
I find it hard to embrace as brothers and sisters those folks
who spend their whole lives comfortably in the nondisabled world
without any mention of personal disability until a disabled
person challenges their authority to speak for us. Then they
justify their position of profit or leadership in a disability
organization by trotting out their spectacles or trick knee or
rheumatiz'. "Actually, we're all disabled in some way, aren't
we?" they ask. "No!" I say. If the only time you "walk the walk"
of disability is when it's convenient for you and you even admit
your disability has little impact on your life and no one
regards you as disabled, give me a break  you ain't one of us!
You aren't in danger of the marginalization we experience or
expect on a daily basis.

Here's a possible rule of thumb: If a person who has not been
labeled disabled has some physical, sensory or mental difference
or limitation that does not significantly affect daily life and
the person does not present himself/herself to the word at large
as a disabled person, chances are the person is not disabled.

Is it a disability if it's invisible? If it's disabling enough to
affect your life, it's also potentially visible. Your learning
difference, your fatigue, your pain or depression could all be
revealed under certain cirumstances. You know you have a "real"
disability when you know society will label and marginalize you
once your difference shows.

I am increasingly tired of disabled people who don't believe the
hidden disabilities of others are significant or "real"
disabilities. But I also have a hard time with people whose
disabilities are completely unapparent who complain of being
"shut out" by the disability community. If you are not willing
to openly identify as disabled, I'm sure you have your reasons,
but don't be surprised if you are taken for an AB. If you are
truly disabled you must realize why we need sometimes to shut
the nondisabled world out  why we need to grab precious
privacy, community and identity for ourselves when we can. I
could not belong to the Black Student Union (BSU) at my school,
and after I learned how oppression robs a people of their power
and identity, I understood I had no place there. I also knew
some African Americans who could and did pass for white. They
knew without complaint that the price of entry into BSU was
identifying as Black. I have heard retorts from some persons
with hidden disabilities along the lines of: "What do you want
me to do  wear a sign?" Well, if that's the only way you can
think of to "come out" as disabled, I recommend you get
suggestions from a gay friend or ask yourself if you really want
to be a part of the disability community.

What about nondisabled people who say they belong in our
community because they experience disability through a loved
one? Non-disabled people, no matter how much they love us, do
not know the inside experience of being disabled. Moreover, they
are in a position to escape the stigma. They can leave our
sides and go out among strangers as "normal people," if only for
a few minutes of peaceful anonymity. They may know the day-to-
day pressures of being associated with a disabled person, they
may deal with their own stigma for loving us, and they may
grieve for our oppression (and their own if they share our
lives), but they don't know the relentless feeling of dealing
directly and inescapably with both the difference and the public
invalidation it inspires. That stiff smile, that condescending
pat, that flight of stairs, that slick elevator devoid of
braille signs, that loneliness on prom night, that aching just to
live our lives without having to argue for equality 
unfortunately, they are ours.

Are people with illnesses disabled? Only when they have the
temerity to neither get well nor die. Society has a niche for
ill people. They should be on the move, traveling the arc from
health to sickness and back to health. There's another niche for
people with terminal illnesses. They should move from health to
death. If they know their manners, they get on with it, too no
"lingering." If you remain in the limbo of ill-health for too
long and you can't do everything you used to do the way you used
to do it when you were healthy, you get stigmatized. And that
stigma sure looks and quacks like disability stigma. People who
linger in abnormal states, who don't work normally, or who need
help acquire a status of invalidation.

Looking at the connection between illness and disability another
way, people who learn to live with chronic illnesses often
demonstrate the same resilience, modified values and creative
pragmatism that mark the disability culture. Chronic illness and
disability seem to teach people similar lessons about life.
Furthermore, some illnesses definitely lead to problems that are
painful, progressive or weakening to the point of being
experienced as not just a difference but as a sense of real
malaise.

To my mind, people with lingering illness are definitly in the
club. This used to bother me because I didn't like reinforcing
the misconception that all disabled people are sick or dying.
Who needs more stigma?? True, some of that discomfort may have
been my own prejudice and denial about illness. Still, robust
disabled people with stable conditions  for example persons
simply born without a body part  would not seem to qualify in
any way as ill. I think it makes sense at times to keep a
distinction between disability and illness because prejudice
against "healthy" disabled people offers a pure case for
studying what ableism is all about. People with disability can
experience horrendous discrimination and abuse simply because
they look different. Until we learn more about how this compares
to discrimination based on illness, I favor keeping a line,
however flexible, between illness and disability, or seeing them
as two entities with a large area of overlap, neither one
subsumable into the other.

I am left with many questions that I believe would be helpful to
answer: Are disabled, ill and elderly people similarly
stigmatized because of society's dread of disability in each
group? In other words, is it all just disability prejudice, or is
there an illness stigma separate from a disability stigma (Is
contagion a factor?) and an aging stigma separate from both?
What part does appearance play? How much is due to public fear of
our dependency on others? What about others' belief that we can't
do enough of the things that AB's think are essential to life to
be considered attractive or fully human? How much is due to our
perceived lack of power and our reminder to others of their
vulnerability to loss/change? I appreciate the ideas of disabled
scholars, including Irv Zola and Harlan Hahn, who have tackled
issues involving disability v. illness and the components of
disability prejudice. But I think we need to continue exploring
the remaining unknowns, especially when so many of our children
are being "integrated" and "included" in the mainstream in the
belief that this will result in, among other benefits, a
reduction of disability prejudice in AB's proximate to them.

I'm already bracing myself for the criticism of the "human race"
brigade. I expect to be accused of encouraging divisiveness when
we should all be promoting our common experience and goals. Let
me respectfully submit that people with disabilities, including
myself, have not created our own marginalization. We got that
from society. Now we must find the best way to survive that fact
physically and emotionally.

If we've learned anything from other oppressed minorities it's
that you gain nothing from efforts to assimilate into the
culture that devalues you. We will never be equal if we accept
token acceptance as slightly damaged AB's. Politically and
psychologically our power will come from celebrating who we are
as a distinct people. I'm not content being a pale version of
the majority culture. I want to be a strong version of something
else  different but equally valid. (I'm being humble here; in
fact, I believe a fully articulated disability culture that
honors differentness and interdependence would be a vast
improvement over the corrupt intolerant culture I was born into!)

As the British Disability Arts activists said so often during
their 1993 tour of the U.S., the struggle shouldn't be for
integration but for power. Once we have power, we can integrate
whenever we want. Once we command respect for who we are, we can
afford to join forces with the rest of the human family, free
from the danger of losing our power, losing ourselves. The
"respect for who we are" has to start with us. We need to work
on our own heads about who we are, our value and the value of our
culture. When we develop a stronger identity as a community, we
can really serve notice on society, or integrate into it, from a
position of strength  on no one's terms but ours.

End of article.





HIV & Disability: Worlds Apart or Worlds Together?

by Jo Bower

It's a truism to say that we fear what we don't know, but nowhere
is this truer than in the fledgling steps toward coalition being
taken by people with HIV/AIDS and those with other disabilities.
It is human nature for groups that don't know each other to fear
each other. Disability communities are not immune to the effects
of homophobia and AIDS-phobia that are rampant in the broader
society; just as HIV consumers and those who are concerned about
them are impacted by the harmful effects of ableism. All these
groups lose when they allow these "isms" to keep them divided.

Alliances, on the other hand, are generally formed out of a sense
of common concern, common problems or some other kind of common
ground. People with HIV share a common set of service needs with
people who have other disabilities; this alone is basis for
collaboration and resource sharing, especially in these times
when resources do not exist to create new services for one
population when they are already in place for another.

The HIV/AIDS and Disability Alliance of Massachusetts was born
out of the disability community. The Multicultural Outreach
Committee of the Developmental Disabilities Council identified
HIV/AIDS as a concern six years ago. The demographics of HIV/AIDS
were changing, people were living longer but developing
functional limitations. The issues facing children with HIV were
of particular concern. A research group was convened that
discussed these issues for several weeks. It was finally decided
that a conference was needed to bring the communities together
and let them explore what their common ground might be. Thus the
first "Building Alliances" Conference took place in the spring
of 1990, drawing over 100 people.

Common issues and needs were discovered in ethics, training,
service access and many other areas. Among common service needs
are: home-based support, personal assitance services, accessible
housing and housing supports, mental health services, early
intervention, medical care and medications, dental care, respite
care. More universal common needs, which are the same for all
people, include: respect and rights, relationships and support,
spiritual support, transportation, recreation, education,
productive activities, income, food, shelter, clothing and basic
safety.

It only makes sense to share resources, if groups and individuals
can overcome their natural tendency to want to do it only "for
our own." It is a challenge, to be sure, to expand our
constituencies beyond what we are accustomed to. But it is an
economic as well as an ethical and organizational necessity to
break through the barriers to create humane, accessible,
consumer-driven supports and services. And there are similarities
between the advocacy movements that have grown up in these
constitutencies. All of us have rejected the terms "victim" and
"patient" to describe our relationship to our conditions and
instead have chosen terms with dignity, which underline our
personhood primarily and our condition second, as in people with
HIV or people with disabilities.

Exploring these and other issues that we share, as well as those
in which we differ, we have a wonderful opportunity to expand
our knowledge of other people's life experiences and to be
enriched by our diversity. Acceptance is a two-way street, and if
we as "minority" groups in the larger society cannot learn to
value ourselves and each other, it may be difficult for us to
seek that acceptance from the broader world. That is not to say
that a community has to overcome all of its own fears and
prejudices to demand equal rights as citizens, but that these
groups have both internal and collaborative work to do. And
there can be no more powerful message to the powers-that-be than
people from different communities joining together in the cause
of dignity, justice and quality of life for all citizens.

Since that first conference, the originally-named HIV/AIDS and
Disability Network has changed its name to the HIV/AIDS and
Disability Alliance and held a second conference and three
regional forums in Massachusetts. We are now preparing for our
third statewide conference, to be held in Marlborough in May.
Plans are also underway for the Alliance to split off from the
Massachusetts Developmental Disabilities Council and either
affiliate with an existing non-profit or become a non-profit
itself.

We have also discovered that we are organizing more than just two
groups or communities. People with HIV, their families and care
providers no more comprise a single entity than do people with
disabilities and their allies. So the challenge is to engage
with a diverse array of individuals and groups, all with their
various agendas, all trying to survive and thrive in a difficult
economic and political climate.

Through alliance building, new relationships, new agency linkages
and new organizational sensitivities are developing. For
instance, the largest AIDS service organization in the state has
initiated a project to recruit and train deaf volunteers to work
with deaf clients. Disability agencies, especially independent
living centers, have begun providing personal care attendant
services to people with AIDS.

But still there are societal sterotypes to overcome. At the
second annual Disability Pride Rally in Boston, a man in a
wheelchair was heard to say to a man with HIV, "You're not
disabled, it was your fault." It turned out that the man in the
chair had been injured in a motorcycle accident. "How is that
different?" the man with HIV asked him.

None of us is immune from the barrage of stereotypical images
that abound in an insecure age, where fear of the "other" is at
an hysterical pitch. HIV/AIDS is considered to be the late 20th
century plague, as polio and syphilis were in earlier times. And
people with HIV carry many of the same misperceptions about
disability as the rest of society. Powerlessness,
disenfranchisement, inability to function "normally," the
oppression of another "outsider" group are all forces that may
cause people with HIV to shun the disability label, even at the
cost of forgoing badly needed financial and support services.

Disability also means different things depending on our gender
and our race, and whether we are family members or loved ones of
people with HIV or disabilities. When disability occurs for
people who already face racism and/or sexism in their daily
lives, the impact of "another label" can be magnified. Although
HIV is disproportionately impacting people of color, and
especially women of color, there are less recognition and fewer
supports for them.

But by being in dialogue together, some consumers have banished a
number of myths, such as: that family and volunteers are
satisfying all the needs; that there are more services for
people who have HIV than for people with other disabilities; that
people with disabilities don't have sex or use drugs.

Our educational forums last year underlined the similarities
between HIV and other disabilities, presented basic information
on universal precautions, aired the concerns of families
affected by HIV and provided information about the Americans with
Disabilities Act. Our experience together has taught us the
benefits of this alliance for both sides:

For people with disabilities and their care providers:

 Gaining a greater understanding of HIV disease and what can
be done to prevent it.  Appreciating how another group shares
their experience and learning from successful advocacy
strategies used by the HIV community.

 Learning from the medical savvy accumulated by people with
HIV/AIDS.  Gaining new allies to create human services that
enhance human dignity and to combat oppressive attitities.

 Getting opportunities to discard outdated attitudes and
stereotypes about people with HIV disease, gay, lesbian and
bisexual people. people of color and other disenfranchised
groups disproportionately affected by the epidemic.

For people with HIV disease and their providers:

 Greater understanding of those services created by the
disability community that will be helpful to people with HIV.

 Learning from successful advocacy strategies used by the
disability community.  Gaining a greater appreciation and
understanding of access issues and their relevance to the HIV
community.

 Getting opportunities to discard outdated attitudes and
stereotypes about people with disabilities.

 Looking past the "label" of disability to see how being
"different" gives one a perspective on the world.

 Including people with all disabilities in HIV education
efforts.

People on both sides gained new allies and friends.

But it's not all rosy or easy. For some people who are HIV+,
looking at the virus through a disability lens is fraught with
difficulty. Some consumers say, "I'm sick, I'm not disabled,"
and some providers may echo the sentiment by saying there's no
need for them to assume a disability label.

Legally, AIDS is now understood in case law as well as in state
and federal statutes as a disability, and an AIDS or ARC
diagnosis entitles a person to a variety of disability benefits.
The World Health Organization has also defined HIV as a
disability. Yet the "D" word is viewed as stigmatizing to many
with HIV, most of whom had no experience of disability before
contracting the virus.

On the other hand, may people with disabilities have yet to fully
accept people with HIV as their peers. There are few materials
and accessible opportunities for HIV education in disability
communities and agencies. Fears of contagion or guilt by
association, though irrational, are tried and true mechanisms
that reinforce isolation. Other barriers include the following:

 The stigma of HIV is perpetuated by lack of education about
the virus, how it is transmitted and how it can be prevented.

 There is massive misunderstanding about facts surrouding HIV
and what it's like to have the virus.

 It can be easy to blame people with HIV, believing they
brought it on themselves, and to couple AIDS phobia with
homophobia.

 Some consumers and providers may fear dealing with the whole
issue of sexuality, which must be addressed in any reasonable
AIDS education program.  People with AIDS generally
experience a gradual decrease in their ability to function and
be independent, while many people with other disabilities are
moving toward improved functioning and greater independence.

 Finally, people's fears about death and dying may keep them
from getting to know people with HIV and learning about HIV
education and prevention.

But these barriers are not insurmountable. Facing and overcoming
them means taking a risk to reach out, to listen and to learn,
to ask the tough questions, to be open, to seek common ground
and understanding. This will not be easy, for the oppression of
people who are somehow "different" than what society perceives
as normal is all around us and, yes, inside of us too.

It means that we who have "traditional" disabilities must face
and conquer our homophobia and AIDS phobia; It means that folks
in HIV communities must confront ableism and the discrimination
against people with disabilities that still keeps many from
receiving needed critical information about HIV disease. And it
means we must all work on our sexism, racism and classism.

Struggling with the diversity of our movements and bringing these
diversities together is a formidible challenge. In the political
arena it is a popular strategy to "divide and conquer" groups
who may otherwise form alliances and draw greater strength from
greater numbers. There have been many attempts to pit HIV and
disability constituencies against one another in competing for
adequate resources, for housing, for access to the care all
people need and deserve.

But it doesn't have to be that way  the advocacy these
communities did together on the Americans with Disabilities Act
proved that. When some US lawmakers tried to exclude people with
AIDS from protection under this landmark legislation and, in a
later maneuver, tried to exclude people with AIDS from food-
handling occupations, the disability community stood firm beside
its brothers and sisters in the first and perhaps still the best
example of how this coalition can be powerful.

A recent example of why it is so important for these communities
to work together occured in Massachusetts when a managed care
working group comprised of advocates from both communities was
formed to protest stringent standards of the state's new managed
care program for Medicaid recipients.

The independent living movement can play a key role in the
breakdown of stereotypes and the development of these
coalitions. Independent living is a concept useful to people
with all disabilities, including HIV disease. It offers a common
vocabulary and a common set of goals. It is about being able to
control our lives and the ways we are connected to others. Many
in HIV communities are beginning to understand the importance of
self-help and are building organizations based on the experience
of the disability movement. Positive Directions, based in
Boston, sponsors a large number of support groups for people who
are HIV+.

Disability and illness are two different, though related, things.
For way too long, persons with disabilities were also labeled as
"sick" and put in the patient role. This has also happened to
people with HIV disease, not all of whom are "sick," meaning
those who are HIV+ (asymptomatic) or who have ARC. For all of
us, "living well" can promote our well-being and a better
quality of life, even in the face of chronic illness or
disability.

Any alliance has to find ways to manage different and even
divergent agendas that exist alongside the commonalities.
Inevitable tensions occur within identifiable constituencies or
between them. For example, the tension in the disabilities
movement between those who support integration and those who
prefer a segregated or congregate care approach is mirrored in
the HIV world.

Consider the experience of people who are deaf, how they have
been forced to assimilate by the dominant culture, and their
struggle to maintain a cultural identity by segregating some of
their activities. Some in this community have had a great deal
of trouble with the term "disability."

This raises a challenging question for all coalition builders:
Are there legitimate times and places for people with common
conditions to be together by themselves? Do we sometimes need
to draw apart, to return to our own, to be accountable to and
supported by those who share most closely the same experience?
Is it best for people with HIV to live in separate congregate
housing or hospice arrangements, or should options and programs
be created that mix groups with different though not necessarily
conflicting needs? There is no "right" answer to these
questions, but choice and acceptance are big pieces of the
answer.

All alliances must leave space and respect for constituencies to
meet and grow separately as well as together. The more diverse
the group, the more necessary this becomes. However, this rhythm
of being apart and together needs to be mutually negotiated, and
the possibilites for people with "different differences" to
create community together should be encouraged.

The new alliances between people with disabilities and people
with HIV disease seem destined to grow. But ultimately their
strength will depend on the ability of all those who are
involved to stand together in solidarity, committed to a common
set of life-affirming values.





Sidebars:

Adaptability is the key when disease & disability are combined

by Cincy Neveu

Living with a rare chronic illness has become normal for me, as
one of few females with hemophilia. Frequent bleeding episodes,
trips to the emergency room and painful injuries were integral
parts of my childhood. Testing HIV positive was no big surprise
after years of blood infusions. I pretended that HIV was just as
manageable as hemophilia until my world collapsed on February
13, 1991, when I awoke with a paralyzing virus that resulted in
a neurologic disability described as a C6 Incomplete
Quadreparesis. Following months in intensive rehabilitation
programs, I have become independent once again using a cane or
wheelchair, but my life has been drastically altered.

Following my disability, I attempted accessing informational,
support and social services from three very distinct communities
and was exasperated by the lack of help available to one who
does not fit the expected patient profile. I seemed to fall
between the cracks of most services. The hemophilia community
generally shies away from collaboration with other AIDS
organization. The AIDS community has been welcoming, although I
rarely find services that are "disability friendly." The
disability community has been the most eclectic and accepting
group that I've found, yet they are unprepared to work with
HIV/AIDS issues and services.

Thus the dilemma: "Where do I go for help, support and services
if all of these communities are separate yet all of these
specific concerns are happening to me simultaneously?" I've done
calling, writing and running around between agencies, but have
given up finding one that can truly meet most of my needs.
Therefore, I try to look on the bright side and piece together
the diverse services available from each of these communities.
Unfortunately, this process is still quite frustrating.

Accessibility is the key barrier in AIDS services. The variety of
services available in the San Francisco area is incredible, but
parking, transportation and physical barriers (usually lots of
stairs) make many of these services unavailable to people with
disabilities.

AIDS agencies are not the only guilty party when it comes to
accessibility. I've attended meetings, insurance sessions,
health care forums, healing groups, etc. that have been in
inaccessible settings. It's incredible to me that people in
health and social services can be so naive, especially in light
of the ADA. On the other hand, disability groups often try to
send me to AIDS services once they know my HIV status. It seems
they either are not prepared to incorporate AIDS into their
repertoires or they don't want to use their limited funds on
people they think could get services elsewhere.

Recently, I've become involved with the World Institute on
Disability's AIDS & Disability Project in hopes of educating
both consumers and providers in both arenas on the importance of
networking and collaboration. As HIV becomes a more chronic
illness resulting in more frequent disabilities, it is essential
that the two communities are prepared to offer the most
beneficial services without unnecessary duplication or obvious
holes in services for people with special needs.

As I struggle to find others with whom I can truly relate, I am
learning a lot about myself. I'm learning to overcome
prejudices, of which I now feel like a frequent victim. I am
learning to focus on the commonality of people rather than the
uniqueness, since we are all unique in some ways and its the
common things that we can share. I am also working on my self
concept. I still have a hard time with the impact that my
medical situations have had on my life. However, when I really
look back on all of the hardships of my life, I guess I've
turned out remarkably well. I've been through an awful lot and
I still manage to keep on fighting. I'm becoming an advocate for
my own health care and have learned to extend that to services
for all. I write a lot of letters and try to get involved with
groups that are working to make conditions better for anyone who
is facing hardships. I think that growing up with a bleeding
disorder has taught me patience and strength in the face of
adversity. While I suffer from the pain and frustration of my
medical conditions themselves, I feel that I would not be the
person that I am today had I not grown up in the face of
uncertainty and pain. I also would not have had the strength and
persistence necessary to manage my disability and to cope with
the threat of HIV.

It's quite a quandary for people with diseases, disabilities and
AIDS to choose which community to identify with. It's
unfortunate that one does have to choose and cannot be accepted
as a complex individual who can be both "one of us" and "one of
them." Currently, I play the chameleon role, in that I try to
blend with whichever group I'm with. It still hurts to know I'm
only getting part of my needs met while the rest are on hold
until I switch to the next identity. I'm looking forward to a
time when I can truly feel supported for all that I am and not
have to deny one part of myself while I nurture another!




Learning to use the systems helps achieve some control

by Doris Butler

The death of a child, estrangement of husband and daughter, the
alienation of family and friends and stress of your own illness
are enough to make any woman give up on life. However, through
my will to maintain a good quality of life for my family and my
faith in God, I'm surviving this battle for life!

My son Jared was 10 months old when he began having high fevers
and chronic ear infections. My husband and I would take him back
and forth to the doctor; he would be given an antibiotic and
sent home. This process continued weekly for six months until
one day they found thrush in his mouth. One of the interns
suggeted he be tested for AIDS. The test came back positive. My
husband and I were devastated, but my son was so sick at that
point I couldn't fall apart.We decided not to be tested ourselves
and not to tell anyone. Life continued and Jared got better
after he started drug therapies.

A year later I needed surgery, and the doctors suggested I be
tested. My HIV test was positive and my husband's was negative.
Our lives began to change. My husband began staying out, money
was short, and most of all he changed. To my horror I found out
that he had begun smoking crack cocaine. His addiction escalated
fast, and within six months he had lost his job, truck and all
sense of reality. At this point I asked my doctor to take me off
work. The position I had carried not only a heavy workload but
also a tremendous amount of responsibility. I had begun making
major errors, was unable to meet deadlines and concentrate on my
duties. I saw going out on stress disability as my only
alternative.

My husband put himself into a drug program. With both of us out
of work, our family income was cut to less than half and we were
desperate. This threw me into the AIDS community for the first
time. I had to learn how to access benefits and services because
my biggest fear was becoming "homeless and sick"! Accepting the
fact that I needed the System and learning how to use utilize it
became a full-time job. I sought out and accessed as many
services as possible (housing, food, utilities and, above all,
counseling!).

The extreme burden of carrying the secret of my illness alone
finally prompted me to tell my closest friends and family. My
biggest fear was telling my Church members, who were actually
closer than family. We had been active members for the past eight
years, I was in the choir and my husband had been a Sunday school
teacher. My pastor did not preach about AIDS, nor was the
subject ever mentioned. I felt that if they had found out about
us we would have to leave the church. I told them my son had been
born with a lung disease. It was difficult to keep the secret
because they wanted to visit Jared and wanted to help.

The worst mistake was hiding the scret of AIDS from my teenage
daughter. When she found out by accident she really freaked
out!. Her reaction surprised me  my husband and I had often had
her watch TV specials and read brochures and articles on AIDS.
She said, "I thought only White people got AIDS, and I thought
you had to be gay!"

At this point I felt pretty much on my own. My son was getting
progressively sicker, my husband was gone, and my daughter and I
were barely speaking. I was 36 years old and I had been working
and supporting myself since I was 16. For the first time in my
life I felt like I had no control over anything!

To supplement my income I began public speaking. I felt fortunate
as an infected woman to have speaking and networking as an
outlet. I was asked to appear in "Absolutely Positive," a video
documentary on AIDS, which was to be shown on national TV! This
prompted me to tell my church members. To my surprise they were
very supportive. At the time my blood levels were all good, I
showed no symptoms of the virus and was in generally good
health. However, the stress and sometimes depression of taking
care of the members of my family who totally depended on me was
disabling. All of us had private therapy as well as family
counseling.

After being off work for one year I was officially terminated. I
applied for SSDI for myself and my children. My husband came out
of drug treatment but was unemployed for months. In May of 1992
my world fell apart: at the age of 4 my son died, my husband
started using drugs again and went into treatment again. My
daughter went away for three months. This was about the lowest
point in my life! I shut down completely: no speaking
engagements, no company, no phone calls, nothing for several
months. However, duty called! I still had a life to live for
myself and my remaining family. We had all been through rough
times, and it became my sole purpose in life to try to provide
the best quality of life I could.

Today my husband is in recovery and working, my daughter is doing
much better and I am working part time for the World Institute
on Disability, a national disability organization. Through
exposure to the staff, many of whom are disabled, I am beginning
to identify more as a disabled person. I realize the disability
system has many services and tools I can use to cope with living
with HIV. My biggest battles now are with the disability system
 a system that has no incentives to work, very narrow
parameters for supplementing your income, housing restrictions,
and one that has not kept up with the changing aspects of HIV
disease. We are not just getting sick and dying but living
longer and healthier!

Everyone's strength comes from somewhere; mine comes from my
faith in God and my faith in myself. Hopefully by navigating
through the maze of AIDS system and disability system, I am
clearing the way and helping others learn about these services
so they can have an easier time.

End of sidebars.







Don't Drink the Water & Don't Breathe the Air

by Marilyn Golden

Most people think disability is something you can see; in fact,
something you can stare at. But it's old hat to disability
advocates that the most pernicious thing about many disabilities
that are hidden is that everyone treats you like you don't have a
problem, so why are you complaining?

One of the most dramatic examples is a disability group that has
come out of hiding: people with Environmental Illness (also
known as Multiple Chemical Sensitivities). People with EI (or
MCS) have extremely debilitating reactions to chemicals and other
substances prevalent in the urban environment  things that, to
them, are toxins, and that, someday soon, may be toxic to us
all.

The general public is outrageously poorly informed about this
disability. The disability community itself scores marginally
better  some of us have begun to inform ourselves and to act on
our knowledge.

Two issues ago in The Rag (November/December 1993), John Woodward
chronicled some of the disability community's failures to
accommodate people with EI. In the last issue (January/February
1994), my letter to the editor described the many steps the
Disability Rights Education and Defense Fund (DREDF) has taken
in our ADA trainings (in 1992 and 1993, with Independent Living
Research and Utilization, DREDF developed the ADA Training and
Implementation Network, which included conducting a series of in-
depth training programs on the Americans with Disabilities Act;
this project was funded by the Equal Employment Opportunity
Commission and the Department of Justice) to accommodate people
with this disability. These steps form, in my mind, the minimum
the disability community should do at any conference to
accommodate people with EI  minimum, because these measures
aren't always enough.

What is environmental illness (EI) or Multiple Chemical
Sensitivities (MCS)?

Persons with EI are the canaries in the coal mine  their
disablement is a clear warning sign that unregulated post-
industrial development has gone too far. Between 1945 and 1985,
annual chemical production grew from 8 million tons to 108
million tons. Legal exposure standards for most chemicals were
set during the 1960s for use in industry, one chemical at a
time, by the manufacturers themselves. Today, the accumulation
of smoke, plastics, chemical cleansers, scented products,
petrochemicals, electromagnetic fields and pesticides are
causing more and more people to become permanently disabled.
Especially at risk are women between the ages of 25 - 55 years,
blue collar industrial workers, office workers who occupy
buildings with no open windows and people living near chemical
waste sites.

Environmental Illness may be even closer to home than many people
with disabilities want to admit. Because many of us take drugs
and receive medical treatments that affect the immune system, we
are at a higher risk. There are anecdotal reports of MS flaring
up after pesticide exposure, for example. Other likely at-risk
conditions and treatments are post-polio, kidney dialysis and
cancer.

The initial "sensitization" (meaning the beginning of someone's
EI) can result from either a single, acute exposure or a
chronic, low-level exposure to a chemical substance.
Afterwards, being exposed again to the same such toxins, or
different ones, can bring about extreme headaches, nausea,
dizziness, rashes, asthma, nasal congestion, fatigue, vocal
impairments, muscle weakness or spasms, near-fatal internal
swelling, confusion, depression, behavioral and emotional
symptoms and a weakened immune system. And to someone already
sensitized, natural things like plants, fabrics, mold, pollen,
animals and certain foods can evoke the same reactions.

Often unable to enter most buildings or even leave their houses
without becoming violently ill, many people with MCS have taken
to living in a single stripped-down room of their homes.
Fleeing from one home to another is common; people are forced
out by such seemingly innocuous events as a neighbor who smokes,
or sprays Raid, or fertilizes the roses or varnishes the
cabinet. Some have evacuated from civilization as much as
possible, living in the deserts of the southwest or the mountains
of Colorado or California.

Rejection by the medical establishment

As if this is not enough, people with EI are routinely seen by
doctors and other "helping professionals" like social service
agency workers as making the whole thing up, and are often
referred to psychiatrists.

While some portions of the medical profession have cleaned up
handsomely (financially, that is) at the expense of people with
hypersensitivities, the profession as a whole has not been
particularly friendly. Most conventional allergists and
immunologists reject the whole idea of Multiple Chemical
Sensitivities as unproven. For example, in one so-called
"progressive" state, the California Medical Association (CMA)
spent ten years formally advising their members and other
important agents such as insurance companies that the few M.D.s
who actually provided some understanding and assistance to
people with EI (known as Clinical Ecologists) lack scientific
justification for their medical advice.

In December 1989, the CMA formally discontinued this ill advice,
perhaps in light of increasing litigation on behalf of people
with MCS. But in the CMA's wake are the damaged lives of
hundreds of persons whose Social Security and Workers'
Compensation claim denials were based on its advisories.

Meanwhile, a state employee in Virginia recently reported that
the 1994 update from his insurance benefit plan (Government
Employees Hospital Association) specifically excludes clinical
ecology and environmental medicine. The disability community's
platform for national health insurance, take heed!

However, formal documentation has begun to appear that backs up
the experiences of people with EI/MCS. In December 1989, a
major study was published by the New Jersey Department of Health
which concluded that chemical sensitivity exists as a serious and
widespread health problem warranting action by medical and
government agencies.

During the same month, California then-Attorney General John Van
de Kamp's Commission on Disability released the findings of a
two-year comprehensive study of the needs of disabled
Californians. The report urged strong action toward constructing
safer new buildings and revamping existing ones, particularly
housing, medical facilities, and public services like courts,
government buildings, schools, post offices, social service
agencies and public transit vehicles.

What goes on out there

Against the backdrop of the struggle for good policy are the
horror stories of persons with MCS and the completely avoidable
misery that has befallen them. Examples include:

 Jo Hughes, who literally had to stay in her home for almost
three years to be able to breathe. One of Ms. Hughes' severe
allergies is to the petrochemical plastics which are used to
make telephones and therefore she could not even talk on the
telephone for two years until she located an old World War II
vintage telephone made of a more stable material which she can
tolerate when it's muffled by foil and cotton. Ms. Hughes
remembers bouts of nausea as a child after oil exposure, but the
condition was seriously exacerbated by workplace exposures in
the early '80s: she worked near pesticides in one school
cafeteria and near asbestos at another school.

 Vicky White, a former independent living center director and
wheelchair-user, who contracted EI while, ironically, working
for the National Park Service to make the parks and park jobs
accessible for people with disabilities. She was exposed to a
variety of workplace chemicals, including herbicides and
pesticides which were sprayed by gardeners wearing protection
suits just outside the open windows and doors near her desk.
She fought unsuccessfully for 6 years simply to be relocated to a
different room. Oxygen is an effective treatment for White, but
it took two years of struggle to get Kaiser, her insurer, to
recognize her disability and pay for the oxygen.

 Betty (assumed name), of a rural community in northern
California; she moved north with her two daughters after years
with MCS in order to leave contaminants behind. Betty was
followed by her ex-husband who refused to act in a way that would
help her avoid chemical exposure. He smoked on her porch, used
strong aftershave before he picked up his daughters for visits,
and, at his house, would wash the girls' clothes with fabric
softeners that left a residue harmful for Betty. This situation,
with its resulting emotional problems, contributed significantly
to the father's success in having Child Protective Services,
which could not understand Betty's chemical sensitivities, remove
the children from her and deny her custody.

What is to be done? and how far can we go?

There is a growing awareness in disability rights circles that
our achievements (which are far from complete) in creating and
enforcing building codes that require architectural access for
physically disabled people, such as those using wheelchairs, and
communication access for sensory-impaired people, such as those
with hearing and visual impairments, is only the beginning.

But it is easy to feel daunted by the immense challenge of
detoxifying society. Given that persons with MCS vary widely in
their chemical sensitivities, and that most or all current
construction techniques are unsafe for most of them, the looming
policy question is, how far is it possible to go?

However, an exploration into the specifics of detoxing our
buildings reveals that, in many cases, solutions are practical
and affordable. Alternatives do exist to problem-causing
building components like synthetic carpets, floor adhesives,
inadequate ventilation systems, pesticides, particleboard and
vinyl and solvent-laden furnishing materials.

And, in the short term, to accommodate clients or employees with
EI, much can be done: relocating persons during painting,
providing fresh air or air filters, changing cleansers, heating
carpets before installation to evaporate volatile chemicals,
replacing gas with electric appliances, prohibiting smoking,
using alternative pesticides and avoiding the use of unnecessary
scents and chemicals in the vicinity of persons whom they harm.

Therefore, we can safely assume that, while at first blush, the
task of detoxifying urban environments may seem virtually
impossible, there are plenty of things that can be done once
ignorance and resistance to change are overcome. This is not-so-
oddly parallel to how the challenge of making society
wheelchair-accessible must have looked to disabled people during
the '60s  it must have looked impossible. But look what we
have accomplished! That goal is in sight, and there's no good
reason to conclude anything different for environmentally-safe
access.

Some of the current battle lines

 In a recent victory, the Department of Justice office handling
enforcement of the Fair Housing Amendments Act (FHAA) issued a
decision requiring accommodation of a Honolulu, Hawaii, tenant
with MCS. Apartment resident Amy Arkoff, who had filed an FHAA
complaint against her apartment management for using toxic
cleaning products, now gets to choose any such products, and
must be notified by the management of building maintenance
activities.

 In another victory, Alexandra and Jared Arminger, two children
with EI in Baltimore, Maryland, have won numerous accommodations
in the school classroom: no more exposure to paints, mimeograph
copies, cleansers, harsh glues, pesticides, fertilizers, oil-
based or acrylic-based products, and other damaging substances.
Their school ventilation systems will now be well-maintained,
their books aired out, their foods natural, and their parents
will be notified of any hazards.

 On October 12, the Indoor Air Quality Act of 1993 passed the
Senate, and a similar bill is in the House. The bill directs
the Environmental Protection Agency to establish a comprehensive
research program and includes a lengthy plan for addressing
indoor pollution. Ironically, the EPA has had its own sick
building problems: a few years back, dozens of employees
complained to Congressional panels about chemical sensitivities
developed during renovations and about being denied alternative
workspaces. In more Congressional news, Congressman Bernie
Sanders of Vermont has held hearings regarding chemical
sensitivities from carpets and is working with the carpet
industry to get warning labels on all new carpeting, with some
real success - the industry is beginning to run scared.

Meanwhile, on the local level of government, MCS advocates in
California have undertaken campaigns to get cities to adopt more
EI-friendly policies. On the same October 12 as the Senate was
considering air quality, the Santa Cruz City Council adopted a
policy officially discouraging fragrance-wearing at City
facilities by the public or staff, strictly banning smoking at
City facilities (including outdoors near windows and doorways),
and mandating departments to follow a protocol for maintenance
and repairs which requires the least toxic methods available and
visible warnings if such methods still include toxins. The same
month, San Francisco's proposed EI policy advanced to the City
Attorney's desk. SF's policy would require the city to consider
MCS accessibility when acquiring property, use safe materials in
renovating buildings, enforce a no-fragrance policy among staff
on request, implement a thorough notification program before any
painting or chemical treatments, provide employees air filters
and other accommodations when needed, and more.

 We all want the armed forces to hold a bake sale to buy the
next bomber, but Marin General Hospital in Greenbrae,
California, set a new trend by holding a "bake out." Before
opening its new wing, it spent nearly $30,000 turning up the heat
to 100+ degrees for three days to evaporate all the solvents.
You can be sure that EI advocates were behind this one; it
didn't happen by itself.

 Five San Francisco Bay area women with MCS have won a long
court battle to get the State of California through its Medicaid
program to pay for their oxygen treatments. Despite the clear
effectiveness of oxygen in reducing some EI symptoms, the state
insisted the EI diagnosis is not sufficiently medically-
recognized.

 In 1990, Florida passed a law allowing persons with MCS to be
registered, and makes it mandatory for lawn-care services to
alert those on this registry before they begin work in their
neighborhoods. It's a start.

 If the biggest need could be singled out, it would be safe
housing, eleven units of which are under construction in San
Rafael, California, one of the first projects of its kind in the
nation. To be called Ecology House, the complex is the outcome
of a four-year battle. It's federally supported and will be low-
income and wheelchair-accessible. More such projects are on the
way; in Minneapolis, the Twin Cities Ecology Action League is
launching a housing office, the first step toward developing non-
toxic, affordable housing.

Marilyn Golden is a policy analyst at the Disability Rights
Education and Defense Fund in Berkeley, CA, and Washington, D.C.
Susan Molloy assisted in preparation of this article, portions
of which appeared in the East Bay Guardian.

End of article.






Sell a Case, Save a Kid?

By Hilary Abramson

Every time Miller Brewing sold a case of beer last December,
United Cerebral Palsy Associations got money.

Similarly, the Muscular Dystrophy Association accepted Pabst and
Miller donations from case sales of commemorative Harley-
Davidson 90th anniversary beer during five months in 1993.

Most of America's prominent disability-related charities fail to
recognize that alcohol may be three times more of a problem
among people with disabilities than among nondisabled people.
Meanwhile, they accept millions of dollars from the alcohol
industry, whose promotions for the charities are often linked to
increased consumption, and whose product is responsible for
thousands of Americans becoming disabled.

During the past 13 years, the Muscular Dystrophy Association has
accepted about $50 million from Anheuser-Busch. In the past
decade, United Cerebral Palsy Associations took about $8 million
from Miller.

To many public health advocates who have disabilities, alcohol
and health charities do not mix. They want charities and their
sponsors to stop using children with disabilities in their ads
and do away with promotions that say the more alcohol you buy,
the more they will donate to charity. "What they are doing is
social marketing," says Paul Longmore, an activist-scholar with
a disability who teaches history at San Francisco State
University. "It's a ploy to make the alcohol company look like a
corporate good guy while using charity to boost sales."

Two years ago, Special Olympics International founders Eunice and
Sargent Shriver forced Texas Special Olympics to sever its $1
million-a-year relationship with Miller because alcohol
consumption by pregnant women can cause mental retardation in
babies. But most disability-related charities refuse to do
without the money even though it constitutes four percent or
less of their total contributions. They say they have never
heard of alcohol being a problem among people with disabilities.
They need every cent, they say, to find a cure or treat the
disease or offer support to families.

Alcohol companies say that only the most cynical observer would
accuse them of legitimizing their product through charities or
encouraging consumption through their charity-related ads and
promotions. Joseph P. Castellano, vice president of consumer
awareness and education for Anheuser-Busch, says their "cause
marketing" is "a laudable, well-accepted way for Corporate
America to help its customers support important charities of
interest to their communities."

According to the federally funded Resource Center on Substance
Abuse Prevention and Disability, from 15 to 30 percent of people
with disabilities may abuse alcohol and other drugs (versus
about 10 percent of the nondisabled population), and more than 50
percent of those with spinal cord and head injuries may abuse
alcohol and other drugs. Half the 100,000 spinal cord injuries
in the United States happened because of alcohol-related
incidents, according to Rehabilitation Institute of Chicago
research.

"People with disabilities may abuse alcohol and other drugs for
the same reasons as their non-disabled peers," reports the
Resource Center. "The higher risks are directly related to the
disability. They include: medication use, chronic pain, increased
family life stress, fewer social supports, excess free time, and
lack of access to approprate substance abuse prevention
resources."

Some disability activists are bringing the health charity/alcohol
industry partnership issue to center stage. The Institute on
Alcohol, Drugs and Disability, a national disability rights
organization, will consider the topic this spring in Boston at
its second national symposium. Also on the agenda is how the
alcohol industry depicts children and adults with disabilities
in its charity-related advertising.

"There are an estimated 43 millian people with disabilities in
the United States and the stereotype is that we live a tragedy,"
says Anthony Tusler, president of the Institute on Alcohol,
Drugs and Disability, and a recovering alcoholic with a spinal
cord injury.

"The real fear a person with a disability has is loss of status.
Charities exist to fix the disability, as opposed to the
movement for self-determination among people with disabilities,
which says there is nothing wrong with us. The kind of promotions
coming out of the alcohol industry/charity connection are not
what we need. Children should never be used in advertisements by
alcohol companies. It's illegal for them to drink and I believe
the industry is hoping the imagery of the innocent child extends
to the product, which is far from innocent in my community.
Words that appeal to pity stigmatize us. It is unfortunate that
we cannot copyright our images and identies and license them to
whom we choose."

There is the Anheuser-Busch prime-time TV commercial entitled
"Sand Castles." It shows six boys running along a beach and
joining a buddy whose legs are dangling (in braces) over a pier.
The camera pans from the boy's ankles to his lap, where he is
nuzzling a puppy.

"At Anheuser-Busch, we believe a child should experience it all,"
says the announcer. "That's why we support the Muscular
Dystrophy Association . . . Anheuser-Busch  glad to be your
neighbor, proud to be your friend."

There was the 1991 Seagram's Crown Royal Achievement Award
fundraiser that raised $110,000 for the Jimmy Heuga Center for
the study and treatment of Multiple Sclerosis. The ad about the
event honoring six athletes read: "Instead of allowing their
hardships to dramatically and permanently alter their
lifestyles, they have risen to the challenge of their
misfortunes to become champion-caliber athletes."

There was Miller's ad to retailers showing an adult hand clasped
by a smaller hand with the headline, "Help Miller Give United
Cerebral Palsy a Hand for the Holidays," and the tagline,
"Miller Advantage. Profit From It."

Call it "cause related" marketing or "social" marketing, health
charity/alcohol company partnerships have produced the following
results:

 Since 1980, Anheuser-Busch has delivered $47 million to the
Muscular Dystrophy Association through its "Shamrocks for MDA"
promotion. This represents four percent of MDA's contributions.
Patrons write their names on paper shamrocks and display them on
a retailer's wall. An ad for the program in an alcohol industry
publication urges the retailer to "bring in the green" by
participating in the program. "Nothing beats the volume or the
profit you'll enjoy with the Bud Family of beers."

 For the past decade, Miller has given about $8 million to
United Cerebral Palsy Associations and encouraged patrons to
donate to the charity directly through its Big Bucks (Christmas)
Club. The donation represents three percent of the charity's
contributions. For $5, a member is entitled to paper antlers, a
red nose, and a Polaroid photo to be displayed on a Big Bucks
Wall of Fame. A 1993 holiday display advises the customer that a
donation to the charity will be made for every case of Miller
purchased.

 From last May through September, Pabst raised $121,900 by
earmarking $1 per case sold for the Muscular Dystrophy
Association. By donating 25 cents a case to the charity, Miller
delivered $85,000.

 In 1991 and 1992, The Seagram Company raised a total of
$20,000 for the National Multiple Sclerosis Society through its
900 telephone number favorite quarterback contest. Each $2 call
offered a chance to win two tickets to the Superbowl for the next
10 years. Heublein Inc. raised $12,000 for the society in
January and February of 1993 through its special phone number
for information on the Tanya Tucker Black Velvet Lady Tour. In
1991, the society credited 4.1 percent of its fundraising sources
to its "Ugliest Bartender" campaign.

 Carillon Importers' Absolut Vodka "Absolut Fastest Skiing
Bartender in America" classic raised $15,000 for the Jimmie
Heuga Center from 1987-90.

That disability-related charities would do business with alcohol
companies is "unconscionable" to Ed Roberts, considered by many
the father of the independent living movement. "I think more
than 30 percent of people with disabilities have problems with
alcohol and other drugs," he says. "I've watched enough of my
friends kill themselves with the stuff. Any person with a
disability knows people who are often in depression, feeling
very lonely, with no idea what will happen to them. They drink
to cover up their feelings. That these health charities would
join with an industry that causes such problems among people
with disabilities is morally wrong. It might hurt to refuse the
money, but it wouldn't be the end of them."

Carol Gill, president of the Chicago Institute of Disability
Research, concurs. In an equitable world, she says, there would
be no charities. What they do would be part of a basic federal
health care entitlement. "Should women need corporate sponsorship
for breast cancer research? Should men need corporate
sponsorship for prostate cancer research?" she asks. "Why should
we have to be subjected to appeals to pity to get the research
done?"

In the world as it is, Gill still opposes these charities doing
business with alcohol companies. "I don't see a successful
marriage between them. As a psychologist who has treated
patients with disabilities, I have seen a tremendous amount of
alcohol and other drug abuse. To me, the alcohol companies are
showing how enlightened and wonderful they are by donating to
the charities to make up for the damage their product does.
There is no way a health organization can accept profits from
that industry without it being a real conflict of interest."

An advertising expert and watchdog, Herbert Chao Gunther heads
the Public Media Center, dubbed by The New York Times "the Ralph
Nader of advertising agencies." To Gunther, alcohol industry
donations to these health-related charities "is a conscious
effort to shift the blame for the alcohol problem in this
country, to neutralize people who might demand higher taxes on
alcohol to pay for its costs to society." The U.S. government
fails to address its $90-billion-a-year alcohol problem, "so
charities feel they have to take alcohol money." The charities
are "guilty to the extent that they turn a blind eye [sic] to
the problems of alcohol among people with disabilities."

Professor Longmore of San Francisco State University says that if
the charity/alcohol relationship must exist, then "cut out the
perpetual child imagery . . . and stop emphasizing the few
overcomers (athletes) who 'suffer their misfortune' to reach
great heights . . ." Every time a promotion makes a big deal over
the disabled athletes, "it trivializes the experience of most
people with disabilities who legitimately need architectural
barriers removed."

The best way alcohol companies can demonstrate a desire to help
people with disabilities, says Longmore, is to have an
affirmative action program to hire them. If promoting
consumption of their product is the last thing on their mind,
says Gill, alcohol companies should give anonymously.

Neither the charities nor the major alcohol companies involved in
these marketing activities have affirmative action programs
specifically designed to hire people with disabilities. But
United Cerebral Palsy reports that its desire to employ people
with disabilities has translated into a workforce 25 percent of
whom have disabilities.

"We do contribute to MDA and hundreds of charities anonymously,"
says Anheuser-Busch's Castellano. ". . . The high-profile
exposure through marketing brings attention to these important
causes that could not be generated by the charities themselves."

Yvonne Lumsden-Dill, director of industry affairs for Miller,
says that her company does not interpret its holiday donation to
United Cerebral Palsy from each case sold as encouraging people
to buy more alcohol. Castellano says that the Shamrockin' for MDA
promotion does not promote increased consumption of alcohol, but
does promote the choice of Budweiser for beer shoppers.

"It takes a particularly cynical and perverted persepective to
interpret that this promotion, which has helped raise tens of
millions of dollars for the cause of treating and curing
muscular dystrophy, somehow contributes to the suffering of the
nation's disabled," says Castellano.

In general, the charities agree with him. John Kemp, executive
director of United Cerebral Palsy Associations, was born without
arms or legs. He is the only leader of a major disability-
related charity who is disabled. He says: "Do you think we're
encouraging the public to consume alcohol by the nature of our
relationship with Miller Brewing? I don't think so. Do we create
for Miller a more positive image in the minds of the public?
Probably. Could we live without Miller? Yes. Do we want to? No."

Kemp says that because constituents have failed to bring alcohol
problems to the attention of the affiliates, he is unaware of
the problem. United Cerebral Palsy Associations addresses the
frustrations that may cause overconsumption, says Kemp, by
advocating removal of architectual barriers.

"Alcohol abuse is not a subject I take lightly," Kemp says. "It's
not an appropriate product to be pushing hard on. It is not
appropriate to encourage people to buy more alcohol. It's
available to too many young people. Our volunteers continually
ask the question, 'What is our relationship to Miller and why?'
They're asking the right questions. Once every year or two, a
discussion at our highest policy-making level takes place about
the appropriateness of taking money from Miller. A certain amount
of concern is raised. I'd say that today, given the nature of
our relationship, it is acceptable and well-managed.

Gerald Weinberg, director of field organization for the Muscular
Dystrophy Association, says he wouldn't want to accept money
from Anheuser-Busch anonymously, because "naming our national
sponsors is a selling point that allows us to approach other
companies."

As for using images of children with disabilities in their ads
with the beer company, the charity expects different people to
interpret the promotions differently.

"More than 40 percent of those we serve are children," says Jim
Brown, director of public affairs for the Muscular Dystrophy
Associatuion. "We do not use children. We present our
constituency . . . Anheuser-Busch should be applauded for all its
efforts on behalf of MDA."

Counseling or providing treatment tailored for people with
disabilities is "not our mission," says Brown. "We can't be
sidetracked into those kinds of issues, because we have a
focused goal  to fund research to find causes and cures for the
most devastating neurological diseases known to mankind."

Of these health organizations, only the Jimmie Heuga Center
considered eschewing alcohol money. Heuga, one of the first
Americans to win a medal for the U.S. Olympic alpine skiing team
in 1964, later contracted multiple sclerosis. His center has
historically refused money from the tobacco industry. In 1991,
The Seagram Company approached the center with an offer to host
a fundraising dinner honoring athletes that reaped the center
$110,000.

"Quite frankly, alcohol was an issue," says Dr. Dick Hicks,
director of the Jimmie Heuga Center. "But since they were
tastefully preaching moderation, we thought we'd give it a go.
We would absolutely never accept money based on helping
manufacturers of alcohol increase sales. We don't see moderate
drinking as dangerous as using tobacco. I feel very comfortable
with the small amount of money we've accepted from them. We need
as much as we can get while applying reasonable standards, which
I think we have."

Arney Rosenblat, public affairs director of the National Multiple
Sclerosis Society, agrees. "Taking funds from a company that is
a legitimate firm certain isn't like dealing with backdoor
abortionists or Colombian drug lords," she says. "If a company is
legitimate and wants to make a contribution to further our work
and service, we'll accept its money. Taking money from an
alcohol company isn't as if we're advocating abuse of any kind.
Nor are we encouraging our constituency to drink. As long as
alcohol and tobacco are legal, the only effective way to
prevention is to build self-esteem."

Special Olympics International is on record agains such
reasoning. In the mid '80s, representatives of Miller Brewing
approached executives at the Texas Special Olympics. "They said
they wanted to give us $1 million in exchange for volunteers to
help them put on what they called The Biggest Party in History
over Labor Day weekend in 1989," says John Householter,
development director for Texas Special Olympics. "We did it in
'89 and again in '90. In all, we made $2.2 million."

Miller spent about $20 million on advertising before the 1989
event, which attracted about 400,000 people to rock concerts in
six Texas cities. According to a 1989 article in The San Antonio
Light, Miller's public relations marketing manager said the real
purpose of the event was to heighten awareness of Miller
products.

The Shrivers, who founded Special Olympics as a sports
opportunity for people with mental retardation, issued a
directive for 1991 that accepting money from an alcohol company
was off limits to affiliates because of the proven link between
mental retardation and Fetal Alcohol Syndrome.

"Alcohol and tobacco industries can obviously offer incredible
sums of money," says David Phelps, deputy director of public
affairs for Special Olympics International. "They have a
negative image that they're trying to counter by associating with
very positive causes, including health organizations. There's no
doubt that the easy road for us is either to turn a blind eye
[sic] or blatantly accept the money.

"The World Health Organizations reports that there are as many as
300 million people in the world with mental retardation.
Research shows that a significant number of these cases are
caused by Fetal Alcohol Syndrome. By us taking this stand and
letting people know we won't take alcohol or tobacco
endorsements or money, we believe we can save a life or make
life better. Then we've done something good."

Hilary Abramson is a media specialist at the Marin Institute for
the Prevention of Alcohol and Other Drug Problems. This article
and the Callahan cartoon are reprinted with permission from the
Institute's Winter 1993 newsletter. The cartoon was previously
published in the collection Digesting the Child Within
(Quill/Willam Morrow). Along with the rest of a series of
cartoons recounting the history of his alcoholism, it was
recently published in a separate little volume, I Think I Was an
Alcoholic.

An information kit on Disability and Alcohol is available from
 The Marin Institue
 24 Belvedere St
 San Rafael, CA 94901

End of article.




The Eye of the Beholder

1. Star Drek

by Bill Bolte

God forbid that I sound like a bitter, angry crip, but I
practically longed for Jerry Lewis recently when I switched on
Star Trek. I hadn't watched it since the last time they'd dealt
with "the cripple problem." I only remember that it was not a
good experience.

Star Trek was going to attack "the cripple problem" again. All
day the radio had promos for it  how a woman "confined" to a
wheelchair was offered a chance to walk again. I had to watch
it. When I tuned in, a man and a woman were having a
conversation. As she left the room, you could see (gasp) that
she was in a power wheelchair. Soon she was being lectured to by
a really cute British fellow. She wasn't letting people help her,
he said. She should not always think people were against her.
Later she was being lectured to about her bad attitude by a
group of beings who looked like someone threw a cream pie at
them and it hardened on their faces. She looked humbled by this
brilliant insight. She was protesting how they could never
understand what it was like to be in a chair. Then she tripped
over a bulkhead that hadn't been made wheelchair accessible (she
was angry and bitter about it).

She invited the cute guy with the English accent to her room,
which had an anti-gravity field. There she could walk. She could
also fly. I think they had sex (Star Trek tends to be
impressionistic about sex so I can't be sure). If they did, it
proved that you can actually take a flying fuck, as so many
people have told me over the years. He remembered reading
something about making people walk again and wanted to try it on
her. "You made me fly, I'll make you walk," he said. She went for
it, but after a few treatments she had second thoughts. If he
cured her, she would never be able to go home to her low-gravity
planet. One step onto her planet and she would shoot off into
space.

A bad guy captured her and another woman and took them hostage,
forcing the good guys to give them a getaway vehicle. The
disabled woman was shot with a stun gun. To save her girlfriend,
she struggled back to life and launched herself head-first into
the gut of the bad guy (don't ask me how). Later, the disabled
woman is with the cute British guy in a nightclub relaxing over
glowing blue drinks. Her speech to him is a classic.

"James, I'm not going ahead with the treatment. . . . I like
being independent, but I wouldn't be a Pacian any more. I'm not
sure what I'd be. Besides, maybe independence isn't all it's
cracked up to be. I kind of like how it feels to be dependent on
someone."

I have concluded that a good meter for determining the adolescent
idiocy of a show is how they handle the disability and age
issues. Two trips with Star Trek tells me where they are on the
disabled issue. I expect to hear a radio plug soon on the age
issue. "Tonight on Star Trek an old woman living in a nursing
home is offered her own apartment, but has second thoughts.
(Sound track voice of woman.) 'Maybe independence is not what it
is cracked up to be. I sort of like it here in the nursing home,
particularly when they strap me in my bed in my own excrement.
It's sort of nice being dependent on others.'"



2. Cure Doctors in Space

by Julie Shaw Cole

Little did anyone think in the early days of "The Cure Doctors"
that Ragideology could get so far out, to the farthest Deep
Space outpost. Yes, Trekors, D.S.9 tells it like it really is.
It is not necessary to be like normates to appreciate yourself
and your uniqueness. It is not necessary to be made like
normates to be OK.

An ensign on assignment to Federation Station Deep Space 9 is
from a very low gravity world. She uses a chair and body splint
to maneuver the higher gravity environments she has to work in
when on transfer assignments. In her own quarters, alone, she
uses her degravitizer to make things right for her. During an
assigned task, she runs into some "steps" aboard the space
station, unwheelable lips in maintenance corridors. She has a
nasty fall and fears that no one will come by to assist her.
Lieutenant Dax comes looking for her. "Why would an architect
build steps into such an area that obviously needs to be
accessible?" Why indeed? It is hard to believe that universal
design is not standard on all intergalactic vessels and space
stations. There are ramps on the bridges of Federation
Starships.

Enter the cure doctor. The ever eye-roving Dr. Brashir sees
promise and romance with the attractive scientist. Note, there
is no attitude issue here about disability and sexuality.
However, after a romantic flight with his lady fair on her non-
gravity turf, the cure doctor decides he would like to make her
more like "us" and perhaps less dependent on others on his high-
gravity turf. You know how it is: they fall for you, then they
want to change you to suit them.

The doctor digs up some old research into neural path
modification technology and sells her on the positive aspects of
being cured, normal, like everyone else. She submits to
uncomfortable neurological path enhancement techniques. She can
walk only briefly and with obvious discomfort. Dr. Brashir
displays his triumph for the crew. She is very ambivalent about
the whole situation.

A sub-plot crisis emerges. The local publican, a Ferenghi of
dubious character, has gotten involved in the usual mercenary
skullduggery with enemy aliens. There is the exciting scene
where the enemy aliens are in control of a shuttle and some of
the crew are knocked out. The low-gravity ensign saves the day
by regaining consciousness long enough to turn off the gravity
in the ship. She then dispatches the villain with a body blow,
since everyone else is stymied in the low-gravity environment.
Granted, we could get into some "crip hero" stuff here, but
let's stick to one issue.

After the ensign's adventure, the persistent cure doctor suggests
he go on with the neural path treatments. She explains to
Brashir, over a romantic dinner at the local Klingon
restaurant, that she wants to discontinue the treatments and
continue to be herself as she is. She likes herself that way.
She understands from her encounter with the villain that all of
us are dependent on each other. The shuttle crew needed her
unique skills as much as she sometimes needed theirs. That suited
her fine. No more "Rehab." Exit the cure doctor.

End of article





Update

Since the last issue's look at eugenics, the headlines have been
full of related subjects.

The Chinese way

In China, the Minister of Public Health submitted draft
legislation to the National People's Congress to "put a stop to
the prevalence of abnormal births," according to the official
China News Agency. He cited statistics showing that China "now
has more than 10 million disabled persons who could have been
prevented through better controls."

The program would involve both termination of pregnancies of
women diagnosed as carrying infectious diseases or abnormal
fetuses and sterilization of couples with mental disabilities
and even deafness.

(Taking a different approach, the Ministry of Health and Beijing
Medical University are cooperating with the U.S. Centers for
Disease Control in Atlanta in a pilot program to try to reduce
the incidence of neural tube defects by making folic acid
supplements available to prospective mothers.)

And in New Zealand?

Suggestions of eugenics legislation may not be surprising coming
from China. But New Zealand? There the Public Health Commission
released a paper on "Prevention of Congenital and Inherited
Disorders." Here are some excerpts:

"The health, education and social service costs borne by the
community as a result of birth defects such as Downs syndrome
and spina bifida, are substantial. Modern scientific knowledge
and diagnostic techniques can now prevent many serious birth
defects at a cost to the community which approximates the amount
expended on the care of an affected individual for just one year

"A recent overseas study has suggested that over 50% of defects
could be prevented with the knowledge we already have . . . At
present only about 6% of Downs syndrome births are being
prevented in New Zealand . . . Overseas experience indicates that
it may be possible to prevent at least 50% or more of such
births . . . This experience also suggests that a similar
proportion of neural tube defects (anencephaly and spina bifida)
are preventable through antenatal screening."

Postnatal testing

Back in the USA, revelations about radiation testing carried out
since World War II included the case of 19 mentally retarded
boys at the Fernald State School in Waltham, MA, in the '40s and
'50s. Told that they were in a "science club," they were fed
radioactive forms of iron and calcium in thir breakfast milk so
scientists could see if chemicals used in cereals prevented
absorption of the minerals. A consent form sent to their parents
did not mention radiation. The test was cosponsored by the
National Institutes of Health, the Atomic Energy Commission and
the Quaker Oats Company.

Other groups used in radiation testing included prisoners,
supposedly terminally ill people, and in one case newborn
babies, mostly African-American infants that were to be put up
for adoption.

Birth rights?

The newest wrinkle in reproductive technology is using in vitro
methods to make giving birth an option for post-menopausal
women. In London, a 59-year-old woman had twins, products of
donor eggs fertilized by her husband and implanted in her in a
Roman clinic.

In Britain, where medical care is provided without charge by the
National Health Service, in vitro procedures are covered based
on physician's determination of need and likelihood of
satisfactory outcome. Many oppose coverage of such procedures for
older women. Critics, like Secretary of Health Virginia
Bottomley, say the child's "right to a suitable home" outweighs
the woman's right to have a child, while supporters argue that
age is not a necessary determinant of parenting ability and that
an older woman should have as much right to be a parent as an
older man. The chairman of the Council of the British Medical
Association, Dr. Sandy MacAra, said: "Better, it may be argued,
a fit, healthy 59-year-old than an unfit, unhealthy 19-year-old."

Italy's health minister proposed a law to limit artificial
pregnancies, and the French government introduced legislation to
ban artificial impregnation of post-menopausal women.

Another controvery arose from the area of infertility treatment
when an Edinburgh researcher, Dr. Roger Gosden, announced that
it may soon be feasible to transplant ovaries from aborted
fetuses into infertile women so that they could produce eggs,
something he has already accomplished in mice. He added that he
wanted full discussion of the proposal first.

This would create the startling situation that a child's genetic
mother would be a dead fetus, another shock for traditional
views and values about birth and parenting to absorb and adjust
to. And this one comes with all the freight of the abortion
debate.

Concerned about the later effect on children, Dr. Arthur Caplan,
an ethicist at the University of Minnesota, was quoted by The
New York Times as saying: "It seems to me it would be
devastating to grow up knowing you were the product of a
situation in which your mother was aborted."

He expressed another ethical concern: "It seems to me that no one
should be able to create a child from your eggs and sperm
without your consent," and since a fetus clearly can't consent,
using fetal ovaries "really does treat reproduction as a
commodity."

Dr. Robert Levine, an ethicist at the Yale University School of
Medicine, said he was troubled by the use of fetuses when there
were other egg sources available. The Times paraphrased him:
"He noted that a long-standing principle in ethics forbade the
use of a vulnerable population merely for convenience. Thus, it
is no longer considered ethical to do research on prisoners or
retarded children if the same studies could just as easily be
done with people who were free to volunteer. In this case, human
eggs can be obtained from adult women who volunteer to donate.
So that raises the question: Are fetuses a vulnerable
population?"

End of article.





ADA wins significant court victories

All around the country, important precedents are being set in
discrimination cases filed under the ADA.

Last November in Boston, in the first Federal appeals decision of
its kind, a panel of three judges ruled unanimously that
discrimination on the grounds of severe obesity violated the
law.

The case was brought by Bonnie Cook against the state of Rhode
Island, which operates the Ladd Center, a group home for
retarded persons. She had worked there twice previously, leaving
voluntarily and with a good work record, but when she reapplied
later, the state refused to hire her, claiming that her weight
put her at greater risk of illness and would compromise her
effectiveness at evacuating residents in an emergency.

Last year she was awarded $100,000 and reinstated in her job. The
state appealed on the grounds that obesity should not be covered
by law because it is caused by voluntary conduct.

The court concluded that there was ample evidence that she was
being discriminated against because her obesity was perceived as
a disability, even if it did not limit her activities.

At about the same time a Federal judge in New York City upheld
the authority of the ADA over health plans accused of
discriminating against employees with AIDS. He dismissed a
motion by a benefits fund representing a group of construction
companies and labor unions that claimed exemption from the act.

Lawyers for four workers with AIDS or AIDS -related conditions
said the decision was a step toward reversing earlier decisions
that allowed self-insured employers' health plans to deny
coverage.

A month later, in St. Paul, MN, a union welfare fund paid
$100,000 to the estate of a construction worker who had died of
AIDS in the first large settlement under ADA for AIDS bias by a
health insurer. Similar cases are being argued or appealed in Los
Angeles, Baltimore and in New Hampshire.

End of article.





Ed Hudak, activist, columnist, dies

Known for his "Disabled in America" column in the Philadelphia
Daily News, syndicated to the Detroit Free Press and other
papers, and his writing in Mainstream and other magazines, Ed
Hudak of Franklin, NJ, died Nov. 27. He was 47.

Also author of a novel and a volume of poetry, he was coordinator
of special services at Gloucester County College. Active in
disability rights especially in his community, he worked for the
establishment of a county office for people with disabilities to
improve housing, transportation and job opprtunities, and he
served a term as a township committeeman.

End of article.





Ragtime


Meet the Other Callahan

by Barrett Shaw

The stories in our update show both sides of a coin  that
controversial coin that's supposed to pay for universal health
care coverage.

On one side we see goverments tallying the costs of care for
people who may always need some degree of care. On the other we
find medical research pushing the boundaries of choice beyond
the borders of what was heretofore literally inconceivable.

It's great to have John Callahan represented in our pages again
after a long time; but there's another Callahan who's important
for people with disabilities to know about, one whose views can
be as painful as John's but without the cathartic chuckle. We
should know Daniel Callahan if for no other reason than his book
What Kind of Life: The Limits of Medical Progress (Simon &
Schuster, 1990) was required preliminary reading for everyone on
Hillary's task force.

His ideas may be where the administration is coming from, but
it's come a long way from them already. His ideas are not geared
for political popularity. It was warning for the need of setting
limits that got Jimmy Carter booted out to make way for the
excesses of the Reagan years. But talk of setting limits in the
context of health care inevitably brings up the dread word,
rationing.

It's not an easy book to read, and not just because the prose is
often turgid and repetitious. What it has to say calls into
question all sorts of basic values and forces you to weigh them,
sometimes against each other. Its argument is forceful just in
its sheer heaviness.

It would be easy to summarize it in a way that would be most
acceptable to the disability rights movement: care should take
priority over cure. But its not really that simple.

After all our railing against the cure doctors, it is very easy
at first to get enthusiastic about Callahan's strictures against
the limitless pursuit of new scientific and medical knowledge.
He even uses a central metaphor that we could embrace: he calls
the frontier of medicine "the ragged edge," because there is
always someplace farther it can go.

"Yet," he says, "at some point it is open to us to decide that we
can live well enough with and on a ragged edge, that we need not
always try to get rid of it. . . . We can ask not how to
continually push back all frontiers, smooth out all ragged edges,
but how to make life tolerable on the ragged edges, for we will
all one day be on such an edge, sooner or later. We can ask how
best to live on such frontiers, how best to care for each other
there. . . . We could make the societal priority the meeting of
need for care rather than for cure." (pgs. 65-6)

How could we disagree with that? It sounds great. Put limits on
cure to provide care. But who draws the line? And where? Do you
want research stopped on your disease or condition? And Callahan
makes clear that lines must be drawn in individual cases as well
as for medicine as a whole.

Our society's vision of science in the past century is that it is
ever growing and advancing toward complete knowledge,
understanding and mastery. The last few decades have shown the
limits of that vision in environmental havoc, radioactive and
toxic waste, all sorts of unforseen byproducts of our forward
thrust. Not to mention ever escalating costs.

Medicine as a science is also showing damage from its headlong
advance: depersonalization, mistrust, overuse of high-tech
procedures and equipment to offset their incredible cost.

Still, doctors and scientists are driven to keep pushing at the
edges simply because they are there. That is part of the
scientific mentality and motivation  to be the first to
discover something, to do it or find it simply because its there
to be done or found. As soon as it becomes possible, it ought to
be done.

Callahan sees a parallel in our personal values. He is concerned
at our internalization of this is/ought principle. As soon as
something becomes available each of us feels we have a right to
it. Here's his hard lesson: not that the cure doctors alone need
to put on the brakes, but that we all need to, because there is
simply not enough money for everyone to have everything.

A frequently given example is kidney dialysis. When the
technology was new, it was used chiefly to keep relatively young
people going. In 1973 Congress established it as an entitlement
for anyone with kidney failure who needed it to stay alive, and
now nearly a third of users are over 65.

Callahan says we spend too much "on the acutely ill in comparison
with the chronically ill, too much on curing in comparison with
caring, too much on expensive individual health needs in
comparison with less expensive societal health needs, and too
much on extending the length of life rather than enhancing the
quality of life." (pgs. 261-2) Absolutely. But what if it's me
who needs that expensive procedure to stay alive? Or my mother?

So much of what he says is so right: "The appropriate social
priority would be to concentrate on those groups whose
inadequate health status impedes their participation in the life
of the society." (pg. 128)

But we are so used to having to look out for our needs and our
rights that something about what he says makes me very nervous.
In a few places he speaks out the logical conclusion of de-
emphasizing acute care: "The larger number of people saved by
acute, high-technology medicine, the larger number of those who
are going to bear some degree of disability and require ongoing
acute care and rehabilitation." (pg. 81)

So there it is.

Callahan recognizes that care, whether attendant care for someone
with a disability or medical and personal care for someone with
an illness, is a right, is society's humane duty and is a lot
cheaper than high tech attempts to cure and extend life. But more
than implicit is the notion that if extraordinary attempts
aren't made to save the lives of critically ill or injured
people, society will gradually be stuck with fewer and fewer
crips, and boy, then we'll start saving money big time, coming
and going.

So remember, as we monitor the course of the health care plan,
the folks who developed it are serious about the importance of
care; they're serious about universal coverage; but they've
gotten the more-than-subliminal message of "the fewer crips, the
better." Perhaps we, too, will have to learn to curtail our
fondest desires, but we must make a stand on our needs.

End of article.






Views of Ourselves

Deception: the most disabling disease

by Kathi Wolfe

What's most hurtful to those of us with disabilities? Keeping our
stories under wraps. What's most painful for us? Telling the
truth about our lives.

Like many disabled people, I've spent much of my life not only
coming to terms with but coming out about my disability. In
fourth grade, I pretended to read what the teacher at school was
writing on the blackboards, so that the other kids wouldn't know
that I was legally blind. As a teenager, I refused to read large
type books in front of anyone because they were larger than the
books my classmates were reading. Though I've always loved
stories and poems to pieces, I'd only listen to Talking Books
behind closed doors  literally in my bedroom closet.

In college, I became more open about myself. I learned that
neither I nor my friends would turn into pillars of salt, melt
down or die if I talked about my blindness. As a graduate
student, I discovered that the hallowed halls of Yale University
wouldn't disintegrate if I told people what life with a
disability is like.

But even after I began to "come out," I still didn't use a white
cane. Did I want the whole world to know about my blindness? My
family and friends would accept me as I am, but would strangers?
Only after several years of getting to know other disabled
people, marching in disability rights demonstrations and
confronting my fears (of rejection and humiliation), did I get
up the nerve to use a cane.

When I was trying to find my identity  to "come out" about my
disability to myself and others  I often wondered if the
struggle was worth it. Wouldn't it be a lot easier to stay in my
cozy bedroom closet, I'd ask myself, when a passerby would leap
away when he saw my cane. Why should I put up with this hassle,
I'd think, as I'd get ready to take part in yet another protest.
Weren't things simpler when secrecy reigned?

During the mid-1980s when I was going through this time of inner
strife, what helped me most to buck up was historian Hugh
Gregory Gallagher's book on President Franklin Roosevelt,
entitled FDR's Splendid Deception. It tells how Roosevelt
deceived the American public about his disability and the ways
in which this deception impacted FDR, his family and our nation.
First published in 1985, it came out in a revised edition early
this year.

Before I read this book, I knew that Roosevelt had contracted
polio some years before he became president. But, like most
people, I didn't know the massive amount of effort and energy he
expended to deceive the public about the extent of his
disability.

I had no idea that FDR used a wheelchair or that he could only
"stand" or "walk" for brief periods with the support of one of
his sons. I was amazed to learn that ramps were installed in the
White House, in trains and in official buildings all over
Washington. And I was outraged to read that these ramps were
removed after Roosevelt's death just as disabled World War II
veterans were coming home.

But I was most astounded to discover that this was kept secret
from the public. Though it's almost impossible to imagine in the
age of C-Span, Roosevelt, members of his administration and the
press conspired to keep FDR's disability hidden from view.

As Gallagher says: "In a very real way a great nation does not
want a crippled man as its President . . . Roosevelt was
undeniably and obviously a crippled man. Literally millions of
people saw him going down his railroad ramp, bent over like a
praying mantis, or hobbling painfully slowly on the arm of his
son. Crippled or not, the nation wanted this man, with all his
magnificent qualities as its leader. So an agreement was struck:
the existence of FDR's handicap would simply be denied by all.
The people would pretend that their leader was not crippled, and
their leader would do all that he could not to let them see that
he was."

"The generally accepted line," Gallagher explains, "was that FDR
had had polio and was now a bit lame; he had been paralyzed, but
now he was recovered. He was a 'cured cripple.'" Gallagher notes
that biographers have in general ignored the importance that
living with polio had in FDR's life, treating the polio as an
episode from which he recovered and was rehabilitated.

Yet at Warm Springs Roosevelt established a rehabilitation center
where people with polio could receive treatment, take part in
recreation and socialize in an open, accessible and welcoming
setting. FDR himself rode openly around Warm Springs in his
wheelchair and talked with both patients and staff. You can't
help but feel sad on reading this that FDR could not be open
about his disability except at Warm Springs.

When I read this book, I understood for the first time how, by
trying to hide my blindness, I had wasted time, thrown away
energy and nearly zapped my psyche. After I finished it, I
resolved not to go back in the closet again about my disability
or anything else. Life's been more honest, open and hopeful
though at times painful since then.

Thinking of "passing?" Read FDR's Splendid Deception and think
again.

FDR's Splendid Deception is available for $19.95 plus $2.50
shipping and handling from Vandamere Press, P.O. Box 52243,
Arlington, VA 22205.

End of article.





Like Walking On The Moon

by Nancy Scott

Snow casts unprotected streets
in dust of not known.
No curbs, no stairs, no echoes
of familiar buildings to speak
straight lines. No traffic
to plot; no cement to tap
in the rhythm that has
no excuse for staying home.
My cane makes a poor shovel
in the shuffle of this new gravity.
I stretch to catch the flakes
of white luck in my eyes.
I know the Moon is watching
and She approves.


End of poem.





NOW AND THEN AGAIN

 homage to James Schuyler

by Susan Hansell

1.

At 6 o'clock
I hear the boys
start up, their
hoots and
howls blow in
from basketball
courts. Whistles
clatter against
my windows, open
to Fall. A dog's
bark bounces
between the yards,
and I wonder where
the girls are.

2.

The sky is
a grey
parfait! Rain
is coming.
Rain is predicted, in fact
but the tennis
players don't mind.
Chartreuse pong
pongs, over brick-
colored courts.
Whose advantage,
as the clouds
retreat? I step
on an earthworm,
trying to make it
to the grass.

3.

Her hands, pale,
fish netted, so
lavender and chilled
the tips are tiny ice bites.
The nurse says, "roll up
your sleeve, please."
And I say, "my veins
are a green road
map, leading you
to my . . . How many
more pokes; how many
more purple bruises?"
No. I don't say
that at all, I
roll up
my sleeve.

4.

Ripe bananas sliced
into white yogurt.
He says "please
eat it."
I watch
The cat eat, and
stretch, her furrr
arching. And
I want to walk
into blue
October.
Did you ever
notice how sleep comes
in ninety minute
intervals?
The clock
unwinds, and sometimes
the phone rings.

5.
Night shuts quickly
down. Almost November so
light all the lights.
Today I thought:
I could ride my bike
to the ocean, and at
the top of the peak
let go
the brakes.
See my body
toss, or sink.
"It's not death you
want, but release," Robin said.
In my kitchen, my refrigerator
gurgles. Its long
black cord just reaches
the wall.

6.

It's raining
now. The skylight
pours in dark
blues, and from
the window I watch
the pear tree suffer,
its orange veined leaves
run to brown and
finally drop.
What a relief
to wake up
to rain..
Hard weather
I will not want
to go out in, but
I wish for
your voice
calling.

End of poem.





Reading

Health care reform from the subline to the ridiculous

by John R. Woodward

Mamma Might Be Better Off Dead
Laurie Kaye Abraham
The University of Chicago Press, 1993, 289 pgs, $$22.50

Strong Medicine
George C. Halvorson
Random House, 1993, 251 pgs, $19.00

Age Wave
Ken Dychtwald, Ph.D., and Joe Flower
Bantam Books,1992, 380 pgs, $11.95 paperback


Health Care reform is hot. It promises to be the biggest
political issue of 1994. If President Clinton gets what he
wants, Congress will approve a package based on the work of
Hillary's Task Force some time this fall. The public will then
get to have their say in the November elections, when senators
and representatives who voted against their constituents' wishes
will presumably be dismissed from their posts. Many governors
and thousands of state legislators will also find themselves
defending their record on health care.

Recognizing that health care reform will influence the 1994
elections as deeply as the economy influenced the elections of
1992, the news media has made health care reform a "beat."
Newspapers, news magazines, wire services and the major networks
are assigning teams of reporters to cover the debate in detail.
You can also sample the depth of public interest in health care
reform at your local bookstore. Most of the chains have
designated shelf space for the emerging flood of books detailing
the problems with American health care and touting one solution
or another. Just as the Gulf war seemed to turn every retired
career military officer into an instant "miltary expert," so the
public interest in health care reform is luring academics,
columnists, business leaders and activits into the spotlight as
"health care reform experts." In a society that permits free
speech, we have to live with the fact that bad ideas and sloppy
thinking can compete for public attention just as effectively as
good ideas and precise thinking. These three books represent a
range of the current opinion on health care reform, and each is
likely to appeal to some of the players who will shape the
process in this cauldrom of competing self-interests we call a
democracy.

Mamma Might Be Better Off Dead is a compassionate, in-depth study
of the Medicaid and Medicare systems, from the point of view of
the consumers they were created to serve. Laurie Kay Abraham
spent three years sharing the lives of Cora Jackson and her
children and grandchildren, an African-American working-class
family in North Lawndale, one of Chicago's poorest areas.
Abraham also studied Mt. Sinai Hospital, the institution that
provides most of the medical care in Chicago's low-income
Southside neighborhoods. You will not be surprised to learn that
the Jackson family suffered deeply. Cora Jackson's diabetes
slowly ravaged her until she died. Robert Banes spent months on
dialysis, waiting for one of the rare kidney transplants
available to a poor black man. Tommy Markham received cursory
care after his stroke, which left him with significant
impairments that might have been ameliorated by proper
rehabilitation. In each case, primary care that could have
prevented or minimized these consequences was not available to
members of the Jackson family, because the law says that you
have to become disabled before the State will provide you with
health care.

Diabetes, renal failure, stroke and substance abuse occur more
frequently in black families than they do in the U.S. as a
whole. While some medical researchers look for genetic reasons
why this should be so, shrewder persons, like Abraham, recognize
that these are all diseases that represent the failure of
prevention. If anybody still needs to be convinced that we are
not using the resources we spend on health care for the poor
efficiently, her book should be enough to prove the case.

As a street-level social worker, I read this book as if Abraham
had set out to write it just for me. Although I work in a rural
area and the Jacksons live in downtown Chicago, I recognized it
all: petty bureaucratic manipulations, services that are mandated
but unavailable, health care professionals who feel that working
with poor patients demeans them, provider agencies that are
always in dire financial straits, endless mountains of pointless
paperwork, and underlying it all, a maze of incomprehensible
eligibility requirements that are too complex to be understood
even by the people enforcing them (but that are constantly
changing). Abraham catches the paranoia and hopelessness that
people live with when they are trapped in the welfare system. She
traces the arbitrary rules and regulations under which the
Jackson family must live back to their origins in federal laws
and regulations, and shows how the public's demand for
"accountability" and "limits to welfare" creates the unlivable
circumstances we impose on our poorer citizens.

Mamma Might Be Better Off Dead will never become the bible of the
health care reform movement; it has too much compassion for
people that mainstream society devalues. As Abraham admits in
her introduction, "this book was not intended to persuade the
middle class that health care reform is in their best interest .
. . this book exposes the glaring inequities in health care
access and quality that exist between the moneyed and the poor,
inequities that existed long before the middle classes began to
feel the pinch." Mamma is an articulate, heartfelt plea to
remember the poor when health care reform plans are written,
lest we perpetuate the criminal errors of the present system.

On the other hand, Strong Medicine might well become the bible of
health care reform, sine it is an equally articulate and
heartfelt plea to members of the middle class that reform is in
their interests. Unlike Abraham, who is a health care journalist
writing from the tradition of activist journalism, Halvorson is
a career health administrator. He wants health care reform
because our present system costs too much, and because the bulk
of that cost, as he sees it, is borne by corporate America, which
reduces profits and makes us less "competitive" in world
markets.

For a man who is writing about his colleagues and employers,
Halvorson is certainly blunt. In the first six chapters, he
unsparingly confronts consumers, doctors, hospitals, insurers
and government agencies, assigning a portion of the blame for our
"mess" to each. He packs more hard statistics about health care
costs into a small space thatn anybody else writing about health
care reform today, but his bluntness and occassional wit keep
Strong Medicine from becoming dry. There's always another small
epiphany around the corner, another anecdote in which some
doctor or administrator will let slip a too-truthful remark
summariizing the issue at hand. Halvorson carries off a truly
conversational style of writing.

He reserves his greatest criticism for the eight major health
care reform schemes that dominate the current debate. Although
he believes that there are good features to be found in the
Canadian single-payer approach, the "buy-right" approach and
"managed competition," each plan  including the Clinton
Adminstration proposal in its present form  has fatal flaws,
because up to now all health care reform thinkers have ignored
what Halvorson thinks is the most critical issue of all: outcome.
He points out repeatedly that health care is a product we buy
without asking ourselves about its quality. This has devastating
consequences: frequently the high-tech, invasive procedures that
have absorbed so much of our health care resources have very
poor outcomes indeed.

Halvorson believes that we need not ration health care by passing
judgment on the consumer's quality of life. Instead he would
seek to abolish the use of procedures if research demonstrated
that they cannot improve the quality of a consumer's life. (For
example, cardiac patients in intensive care units can be revived
90% of the time when they go into cardiac arrest  but 95% of
them will die in a matter of days anyway.) For reasons of
politics and business, outcome data is not routinely collected by
health care providers. Without means of comparing different
medical procedures  and different medical care providers!  we
are at the mercy of a system in which providers are free to
exploit consumers by offering the most costly care, not the most
efficient. Halvorson believes that any national health care
reform plan must collect outcome data and use it at every level
of planning. So far the Clinton Administration has not assigned
outcome research a high enough priority.

Although this book contains the basic facts and figures about
health care costs that everybody interested in the debate should
know, and although his insight about outcome data should become
an essential part of the debate, Halvorson has his patches of
ignorance. He correctly recognizes that long-term care costs are
breaking Medicaid, and he knows that nursing homes are
businesses, but he seems totally unaware that an alternative
exists. There is nothing in Strong Medicine about moving
resources out of institutions and into community-based personal
assistance services that are more humane and more cost-
effective. He doesn't seem to know that many significantly
disabled persons who are now rotting away in nursing homes could
receive cheaper personal care assistance in the community, get
jobs and become taxpayers. Halvorson speaks vaguely of
controlling long-term care costs by pooling care recipients and
negotiating with providers to furnish acute and long-term care
out of the same funds. It's incomprehensible, and it's the one
place in his book where his precise and rational thinking breaks
down. I found myself wishing that he had done just a little more
research, or that someone had somehow slipped him an ADAPT
manifesto.

For completeness sake, I include a third book, which, although it
is not exclusively about health care, has caught the attention
of health care reform thinkers. Age Wave is the latest book of
"futurism" in the tradition of Alvin Toffler and John Naisbett;
and Dychtwald's prognostications will predictably be about as
accurate as theirs. In Age Wave, he ventures to predict that the
greying of the baby boom generation will "transform" the way
America thinks of aging and expand the lifestyle options
available to aging persons. I knew that I'd have a hard time
sticking it out through the whole book when I came across his
prescription for personal assistance services: "nursing homes
without walls." According to Dychtwald, "care managers" will take
over the lives of aging persons, and home nursing services will
bring them nursing care in their own homes, so that only those
aging persons who pose the greatest "burdens" on their families
will have to go into institutions. He tells us excitedly that,
"major private companies like Upjohn Healthcare and Kelly
Services now offer services aimed at this same market."

Everywhere else in his book, Dychtwald speaks enthusiastically of
the boomer generation's willingness to change the institutions
through which it passes, and of the individual boomer's spirit
of "enterprise," yet his proposal for aging boomers who need
help with their activities of daily living is that they should
subscribe to a system that brings the humiliation and
intrusiveness of a nursing home into the privacy of their own
bedrooms. I can forgive him for not knowing that alternatives
exist to corporate home nursing agencies; I can't forgive him
for getting his facts wrong. "Care managers" already exist for
many aging persons through the network of non-profits funded by
the Older Americans Act. Moreover, Upjohn and Kelly Services not
only had home nursing divisions for decades, but they both
recently sold their operations to Olsten Corp. because they
weren't making much money! So much for Dychtwald's "trends."

This book would be just an amusing sideshow to the health care
reform debate if only it hadn't caught on with so many leaders
of corporate America, such as Lee Iaccoca and John Scully, whose
enthusiastic comments appear on the back cover. Dychtwald's ideas
have been cited repeatedly in insurance industry trade journals
and he has become a bit of a personal-investment guru. Something
about his glib, New Age line of cant seems to be catching on
with the same people who can say phrases like "information
superhighway" without giggling. Many health care reform decision-
makers who know nothing about the lives of persons with
disabilities will no doubt greet his idea of "nursing homes
without walls" as if it were freshly-revealed wisdom. If it is
true that there is nothing so powerful as a bad idea whose time
has some, then let us all keep a close watch on Dr. Dychtwald.

Nothing else that will happen in the '90s will have as much
effect on the day-to-day lives of persons with disabilities as
health care reform. We would all like to think that reform will
benefit us, but we must never forget that the public could
pressure our leaders to find universal health care for
nondisabled persons by cutting the care that persons with
disabilities need. Abraham shows us the consequences of
neglecting the health care needs of the poor, while Halvorson
points the way to a system of health care that will reform the
quality of care, as well as the access to it. Dychtwald serves as
a reminder that bad ideas about health care reform are all around
us. We can learn something important about our future from each
of them.





Some sources for people with chronic fatigue syndrome

by Sharon Kutz-Mellem

Hope and Help for Chronic Fatigue Syndrome
Karyn Feiden
Simon & Schuster, 199?,
216 pgs, $10.00 soft cover

Beyond Rage: Mastering Un- avoidable Health Changes,
Revised and Expanded Edition
JoAnn LeMaistre, Ph.D.
Alpine Guild, 1993, 208 pgs, $24.95 hardbound
$12.95 audio tape,
$39.95 videotape

Last March, after four years of perplexing and seemingly
unrelated symptoms and mistaken diagnoses that ranged from
"You're crazy" to "You have arthritis," I was finally diagnosed
as having chronic fatigue syndrome. I knew little about this
disease  and mainly what I knew was from what had been reported
by the press, who had attached the patronizing and unflattering
little handle of "Yuppie Flu." I set about trying to find
accurate, reader friendly information amidst the existing
material that gave both conflicting reasons for the cause and
conflicting suggestions for the treatment of CFS. Fortunately, a
friend gifted me with my copy of Hope and Help for Chronic
Fatigue Syndrome.

This book has become an invaluable resource over the past months
as I have learned to cope and understand this illness. Author
Feiden writes from the perspective of an activist in conjunction
with the CFS/CFIDS Network, tackling the emotional, physical and
political issues associated with CFS. The chapter selections
range from an overview of CFS to self advocacy and how to apply
for Social Security Disability and other public benefits
programs, as well as information about Independent Living
Centers.

In addition to providing hands-on ammunition for confronting the
medical establishment and society's skepticism about CFS, Hope
and Help includes information on alternative therapies and
holistic medicines for those readers who are leery and weary of
medical-model-centered treatment. And if you're having a hard
time convincing your family and significant other(s) that you
have a legitimage disability, leave this book open to the
chapter entitled "An Aside to Those Who Love CFS Patients." Who
knows, they just might read the whole book.

In a word, this handbook answered virtually every question I had
about CFS and, as a bonus, includes an extensive appendix,
listing additional resources and key reading.

The jacket copy of Beyond Rage describes this book as "an
essential guide to mastering the emotional impact of unavoidable
health changes. If you are affected by chronic illlness,
handicapped by accident, facing a difficult recovery from
illness, or ravaged by aging, this book is for you." I might add
here that, if you are a person comfortable with the
psychological paradigm, this book is indeed for you. If you are
not, don't expect to find much in it along the usual disability
rights lines.

LeMaistre. a person with MS, addresses the psychological and
emotional issues faced by people who develop chronic illness.
She organizes emotional response to chronic illness in six
Kubler-Ross-like stages of acceptance: crisis, isolation, anger,
reconstruction, intermittent depression and renewal. She supports
these stages with fictionalized case studies, followed by
commentary.

What is missing, to LeMaistre's credit, is the usual subtle
blaming of the "victim" for his or her illness or disability. In
fact, she addresses the issue of self-blame that is perpetuated
by society's general ignorance. She writes, "Traditionally, the
experience of serious illness has been approached in two ways:
(1) a gloomy perspective of resignation, self-denial and
helplessness, sometimes unwittingly fostered by our cultural
beliefs, or (2) a Pollyanna approach that denies altogether that
there has been any real trauma. Both of these perspectives
distort and disguise the reality of chronic illness."

A dozen or so pages are devoted to an appendix of organizations
that "provide information and support to the patients and the
families of patients having to cope with chronic pain and
illness." Absent from the listing are groups involved with
disability rights, although there is a section in the appendix
called "Disability and Independence."

Beyond Rage might serve as a first primer for those who have
become newly disabled. But my sense is that it would be a better
tool for social workers, clinical psychologists and other
service providersalong with a subscription to The Rag.

End of book reviews.




Ragland

Yet another farewell -- and a welcome

by Sharon Kutz-Mellem

There have been a lot of changes here at the Rag office during
this past year, and I'm about to spring one more on you; by the
time you receive this issue of The Rag, I will be securely
installed in my Blue Tweed Lazy Girl Recliner  my concubine, my
enemy.

During the past four years, the chair has also been my refuge:
immediately upon arriving home from the Rag office each day, I
would collapse into it. "The Chair" by now has absorbed my own
unique scent, the imprint of my body, all my fears and worries,
my physical pain and feelings of isolation. For the past four
years I have been plagued by a collection of seemingly unrelated
symptoms that left me with much pain, intense brain strain with
blurred vision and balance problems, a constant fever and
mysterious arthritis-like joint and muscle pain  in fact I was
even mistakenly diagnosed as having rheumatoid arthritis. My
ability to maintain my workload at The Rag has progressively
declined.

Last March, I crashed and burned and self-referred myself to a
rheumatoid disease specialist. He said, "You have chronic
fatigue syndrome." I asked, "What is that and what do I do?" He
said, "It's thought to be a disease that encompasses a number of
varied symptoms, which may or may not be caused by a virus. Not
much is known about it. Quit your job, go home and rest and have
a good life." I thought, but did not say, "Screw you." So I went
back to my primary care physician who asked, "Can you quit your
job?" She referred me to a "chronic fatiqe specialist." She's
open to trying new things and does her best to treat me with
respect. However, her suggestion was that I quit my job.

So these past months have been spent reading everything I could
get my hands on about CFS. I signed on to a CFS bulletin board.
I prepared to leave, training others here in the office to take
over the administrative end of things. I grieved. I raged and I
went home each day to the blue chair. I felt disabled, but I did
not look disabled. In fact, I looked robust with my 40-pound
weight gain, apparently a commonality shared among people with
CFS. No, I do not look as if I have a disability. Except for the
dark circkes under my eyes and the short term memory loss that
results in lapses in my speech, you would never know I had a
disability. I can no longer work because of the CFS. I have to
apply for Social Security. I have to take daily medication. I
have to manage, each and every day, what precious little energy
I have to try to avoid the inevitable muscle pain. But I do not
look disabled.

A couple of years ago, I wrote a piece for The Rag called "In
Search of the Politically Correct Disability." I discoursed in
that piece about the great unspoken hierarchy of acceptance in
the disability rights movement of those of us with hidden
disabilities. I wrote that my own disability, along with the
other hidden disabilities, was the stepchild of the movement,
that a dialogue needed to take place between those of us with
visible disabilities and those of us with hidden disabilities. I
am still waiting for that conversation to take place, and I hope
that this issue of The Rag, starting with Carol Gill's thoughts
on the subject, will help get it going.

Maybe in the future I'll make adaptations to the blue tweed chair
 put it on wheels, motorize it and meet you at the next ADAPT
action. In the meantime, I will curl up in my chair and catch up
on reading, watch a little bad TV and wait to see if my body and
I can reach some sort of agreement. And I will miss all of you.
You have taught me a lot about disability, about rights and
about myself. Thank you.

I leave The Rag in good hands. Let me present the new managing
editor:


Hello! If you have wondered about the strange sounding name on
some of the customer service letters you may have received
lately, my name is Leigh M. Sahiouny and the last part of that
is pronounced "Sa-hyoon-ee." Don't feel bad if you can't say it,
because I'm still getting used to wearing it around during the
first two years following my recent marriage. I've gone from the
Scotch-Irish name "McDaniel" to my husband's Lebanese name. This
transition  along with learning how to cook Middle Eastern
cuisine  is just one of many I have had in the past year. I have
also moved from working with internatonal justice and mission
issues for the Presbyterian Church (USA) national headquarters
to grassroots advocacy work with The Rag. My previous publishing
experience was with an international journal entitled The English
Teaching Forum.

I'm really looking forward to working in Ragland and have
already gained so much more awareness in the few short months I
have been here. I still don't know how I will fill Sharon's
shoes, but I'm very certain that the Rag family will be sure to
educate me. I'm looking forward to the journey with you all.

End of article.





Topics to be explored in upcoming issues of
The Disability Rag & ReSource

May/June
Children and Disability
There's been so much emphasis on adult issues (such as, we're NOT
kids) that we may have shorted coverage of kids' issues. From
mainstreaming to inclusion, etc.

July/August
The Big Business of Disability
Did you ever think about how many people hold jobs making or
selling or providing products or
services for people with disabilities? And how many of them have
disabilities?

September/October
Disability in Other Countries
What is the status of disability rights in other parts of this
rapidly changing world?

If you have leads, contacts, or a proposal for a story to submit,
please send them to the editor at

The Disability Rag & ReSource
P.O. Box 145
Louisville, KY 40201

End of announcement.





What?

More (w)holes

Has she been talking to Jerry?

After the publicity last winter about all the people who had
unknowingly been subjected to radiation experiments since World
War II, including retarded teenagers, indigent cancer patients
and prisoners, Energy Secretary Hazel O'Leary called on the
government to compensate them, saying: "It seems to me that my
position ought to be, what does it take to make these people
whole?"

Do we love this place?

When deaf actress Terrylene Sacchetti sued Burger King under the
ADA for refusing to serve her when she handed the cashier a
written order at the pickup window instead of using the
intercom, Stan Kyker, executive vice-president of the California
Restaurant Association, said that those "people [with
disabilities] are going to have to accept that they are not 100
percent whole and they can't be made 100 percent whole in
everything they do in life."

A new way to say the "b" or "c" word

When Sesame Street sent out press releases about a new cast
member, Tara Lynne Schaeffer, last fall, they still couldn't get
it right about chairs, noting that "Tarah has a physical
disability which keeps her in a wheelchair." They even went on to
quote her saying she doesn't have to stay in the chair all the time.

With whizzes like this, why bother?

You know how some catalogs have these chummy little asides about
their wonderful employees? Anne Fesh sent us one from Deva
(State of the Heart Clothes) that boasts: "Susan and Jerry keep
our computer in line. Jerry hears a bit; Susan not at all. But
they're great lip readers and even better mind readers so that
the rest of us have never learned real signing. And talk about
accuracy . . . the rest of us claim their near-zero error rates
result from a lack of audio distractions. They've taught us to
see how disabilities can become assets.

Dull abstractions, unless you've been there

Have you noticed how almost all of the criticism of
"Philadelphia" goes on about how it misses the reality of gay
life because it doens't have much cuddling, just courtrooms?
Like David DeNicolo, a senior editor at Allure, writing in The
New York Times: "The director, Jonathon Demme, also shot a scene
with the two lovers in bed together, which ended up on the
cutting room floor. Since these personal elements have been
stripped away in the finished film, abstract notions like
"justice" and "discrimination" are left to fill the vacuum,
which may account for the feeling of disorientation expressed by
many gay viewers who saw the film, looking for pieces of their
lives on the screen."

End of What?





We wish we wouldn't see . . .

(The ad shows an attractive color photo of a teenage boy
looking pensive in a wheelchair . The headline reads:
I used to drive everywhere until I got my new wheels

The rest of the copy reads:
If you think seat belts aren't cool, try one of these on.

Hold on to dear life

Wear your seat belt

Sponsored by Primary Children's Medical Center Foundation and Jon
and Karen Huntsman

Printed and Distributed by Little Caesars Pizza)

Submitted by Mark L. Smith of the Utah Independent Living
Center, and by Barbara Toomer of the Disabled Rights Action
Committee, both of Salt Lake City

This is what folks in Utah got on the back of some pizza coupons,
which is why he's perforated. One thing we wonder is how come,
if people who use chairs can't drive, they get so many parking
places reserved for them.

Of course everyone knows, and need to be reminded, that people in
wheelchairs can in no way be cool, nor are their lives worth
anything.

Do you see things like this  that just continue the stereotypes?
Send them to us and we'll
print them on these pages. Please include name and address.
Please send clean originals to
We wish we wouldn't see . . . , The Disability Rag, Box 145,
Louisville, KY 40201.

End of "We wish . . ."
