"Never
apologize for showing feeling. When you do so, you apologize for
the
truth." -- Benjamin Disraeli
"Each time a gay POZ person
finds the closet morally acceptable for himself or others, he
degrades himself as gay POZ and sinks to the level of
abjection dictated for gays Us by the dominant culture.
No gay POZ person with sufficient self-respect and dignity can
be required to view himself or other gays Survivors in
this way." Richard Mohr/SoBQB01
Another Kind of
AIDS Crisis
A
striking number of HIV patients are living longer but getting older
faster—showing early signs of dementia and bone weakness usually seen
in the elderly. By David France Published
Nov 1, 2009
U.S. Warned Against AIDS Complacency
Sun Jul 7, 2002 By
EMMA ROSS, AP Medical Writer
BARCELONA,
Spain (AP) - The United States must revive the passion it once had for
tackling the AIDS epidemic, otherwise infection rates could start
climbing again, the U.S. AIDS prevention chief said Sunday.
U.S.
AIDS cases and HIV infections have remained fairly stable since 1998 at
about 10,000 new infections every three months, but that overall
stability may
mask reported increases in HIV infections among
heterosexuals, said Dr. Ronald Valdiserri, deputy director of the
National Center for HIV, STD and TB
Prevention at the Centers for Disease Control and Prevention.
About 1 million Americans are infected with HIV, which causes AIDS.
The lack of additional progress against the virus likely stems from
several factors, including the large number of infected people who
either do not know
they have the virus or are not getting treatment.
"Today's
epidemic is very different from the one we faced a decade ago. The
populations at risk, the attitudes about infection and the science of
HIV have
all changed. And so must our prevention
efforts," said Valdiserri, who presented new research at the
International AIDS Conference in Barcelona.
HIV/AIDS diagnosis no longer a death sentence
May 23, Grand Rapids Public Health Examiner Nancy Zielinski
The United States Centers for Disease Control and
Prevention,
CDC, declared June 5, 1981, as the official birth day of AIDS (acquired
immune deficiency syndrome), a disease caused by the human
immunodeficiency virus (HIV). The CDC issued its first warning
describing a rare form of pneumonia striking a small group of gay men
in Los Angeles. That declaration marked the beginning of a worldwide
epidemic that was soon to be known as HIV/AIDS. For the most part,
nearly everyone diagnosed with the disease died.
SAN
FRANCISCO (KGO) -- Scientists are exploring a medical mystery -- why
HIV patients are aging prematurely or dying earlier from non-HIV
ailments. Leading researchers were in San Francisco Tuesday to discuss
the possible causes. Is it the treatment or the disease?
MAKING A DIFFERENCE
You and I want our lives to
matter. We want our lives
to make a real difference - to be of genuine
consequence
in the world. We know that there is no
satisfaction in
merely going through the motions, even if those
motions
make us successful, or even if we have arranged to
make
those motions pleasant. We want to know we have
made
some impact on the world. In fact, you and I
want to
contribute to the quality of life. We want to
make the
world work. -Werner Erhard
Strategizing AIDS
by Yusef Najafi Metro Weekly Monday
May 24, 2010
The
White House Office of National AIDS Policy (ONAP) presented a tentative
outline of a National HIV/AIDS Strategy during a community meeting in
D.C. and a national conference call on Friday, May 14.
’’What
we’re telling you is where we’re at, but I think we can all recognize
that this will evolve,’’ said ONAP Director Jeffrey Crowley, addressing
the crowd of about 60 people in the South Court Auditorium of the
Eisenhower Executive Office Building.
The
72-page booklet distributed at the meeting, ’’Community Ideas for
Improving the Response to the Domestic HIV Epidemic,’’ provided the
outline that was crafted after ONAP conducted an Internet survey on its
website, as well as hosted 14 community discussions around the country,
including one at the University of D.C. on Sept. 21, 2009.
"There
are some people who live in a dream world, and there are some who
face
reality; and then there are those who turn one into the other." --Douglaus
Everett
"He who conceals his disease cannot expect
to be cured." ...an Ethiopian Proverb
"Community in Search of an Identity" By
Mary Fisher
|
Flying
back to New England yesterday was interesting. I've always loved this
part of the country and have enjoyed splendid times here. My husband,
Brian, and I met and lived in New York. Brian died in 1993 and is
buried in New England. It was in New England that I first met Larry
Kramer, the founder of ACT-UP, who has since become a great friend.
Larry is one of the nation's finest playwrights, and he never fails to
make me laugh. I was standing on a stage in New England, substituting
for Arthur Ashe who wasn't feeling well, when the announcement came
that Arthur had died. I let my mind review all those moments yesterday,
flying from Florida where my sons and I moved recently to be nearer
family. New England is important territory to me, and you're important
people.
I
want to talk this morning about what it takes to create a community,
because I believe the idea of an "AIDS community" is mostly a myth.
There is no such beast. Some of us have AIDS; some of us enjoy
community. But we'd be hard-pressed to give any kind of definition or
meaning to the idea of an "AIDS community." And it's too bad this is
true. If ever there was a group in need of community, it's the group
represented here this morning: people with AIDS and those who care
about us. We would be a community full of suffering and stigma, but
also a community full of humor and power. We could be an international
community, because the virus has made us so; we could be a supportive
community... if we would make us so. The virus has done a marvelous job
of finding those who are Black and White, gay and straight, young and
old, male and female, African and American. But we've not yet learned
to imitate the virus's ability to enroll everyone in a single
community...
http://www.hivcouncil.org/mary_fisher.htm
“We need
leaders everywhere to demonstrate that speaking up about AIDS is a
point of pride, not a source of shame.
There
must be no more sticking heads in the sand, no more embarrassment, no
more hiding behind a veil of apathy. Leadership means respecting
and
upholding the human rights of all who are vulnerable to HIV/AIDS…”
UN Secretary-General Kofi
Annan , 2004 International AIDS Conference Opening Address
April 14, 2004
Price of AIDS Drug Intensifies
Debate on Legal Imports
By
GARDINER HARRIS
 he recent decision by Abbott
Laboratories
to quintuple the price of its crucial AIDS drug Norvir will be at the
center of a federal hearing today in which AIDS groups and consumer
advocates plan to argue that the government should begin allowing the
import of cheaper drugs.
The
hearing, which will be conducted by the Department of Health and Human
Services, is a result of last fall's Medicare drug legislation, in
which Congress called for a general inquiry into the import question.
But the escalating protest over Norvir, whose average annual dosage
cost rose to about $7,800 in January from $1,500, has suddenly given
the import issue unexpected urgency.
Norvir
is a vital ingredient in many of the drug "cocktail" regimens
prescribed for tens of thousands of AIDS patients. Abbott, which cannot
raise its prices overseas where governments control drug markets, says
it has had to raise prices in the United States to continue financing
its research into H.I.V. and other diseases.
Norvir
will also be the focus of a hearing that has yet to be scheduled. At
that session, the National Institutes of Health will hear arguments
over whether federal health authorities should take the unusual step of
allowing generic versions of Norvir years before Abbott's patents
expire.
In the cases of drugs that were
developed with federal money — as
Norvir was — the government has long
held the right to demand "reasonable" prices, but has never done so.
"The
taxpayers already paid for this invention, so if anything it should be
cheaper in the United States," said James Love, director of the
Consumer Project on Technology, a group that pushes for lower drug
prices.
Mr. Love plans to
testify at today's hearing, as do a number of consumer advocates and
members of AIDS groups who have protested Abbott's pricing of Norvir.
With
total sales of more than $1 billion since its introduction in 1996,
Norvir long ago became profitable for Abbott. But with the recent price
increase, the thousands of Americans who use Norvir now pay 10 times
what the price is in Europe, where drug prices are regulated under
national health care plans. An annual Norvir dosage in Belgium, for
example, costs less than $720 a year.
Abbott
explains its pricing in this country by saying that patients are using
smaller doses of Norvir than originally expected, and so the price
increase is intended to recoup those losses. Because drug prices are
regulated abroad, but are not in this country, American consumers often
end up in effect subsidizing overseas patients.
"To
continue the work in H.I.V. and other therapeutic areas, we decided the
appropriate thing to do to resource our program was to make up our
losses with the price increase," said Dr. John Leonard, an Abbott vice
president in charge of drug development.
Support
for legalizing drug imports is building in Congress. Last Thursday,
Senator Charles E. Grassley, the Iowa Republican who is the chairman of
the Senate Finance Committee, introduced legislation that would
gradually legalize drug imports from Canada, Australia and Europe.
More bills are expected.
Senator John Kerry, the Massachusetts Democrat and the party's
presumptive presidential nominee, has announced his support for import
legislation — an issue the Democrats hope to exploit in the
presidential campaign.
Drug
makers fiercely oppose all efforts to legalize drug imports. They argue
that bringing in foreign drugs — even when made in the companies' own
factories — would effectively import foreign price controls, while
reducing profits so much that companies would be unable to continue
much of their research efforts.
Federal
drug officials, meanwhile, have argued that with imported drugs they
cannot protect consumers from dangerous counterfeits that have none of
the safeguards that cover drugs approved for sale in the United States.
But import advocates say that
legalizing drug imports is the only way to make medicines affordable.
All sides have something to say
about Norvir, which has quite suddenly become a touchstone in these
swirling debates.
"Norvir
is sort of a nexus of all the bad practices that all the drug companies
use," said Senator Charles E. Schumer, Democrat of New York. "Abbott
should understand that what they're doing invites scrutiny and change."
In
1996, Norvir became the second marketed protease inhibitor, a class of
compounds crucial to most AIDS drug regimens. The drug's introduction
followed an eight-year research effort at Abbott that began with a
grant from the National Institutes of Health, according to John
Erickson, the former chief of Abbott's AIDS drug research program.
"The
grant was critical in allowing us to make the rapid progress that we
made," said Dr. Erickson, who is now president of Sequoia
Pharmaceuticals in Gaithersburg, Md.
Researchers
soon discovered that Norvir, in small doses, had a unique ability to
enhance the effectiveness of nearly all protease inhibitors. So even as
other companies introduced newer drugs with fewer side effects than
Norvir, the older drug became widely used as an adjunct.
Matt
Sharp, an AIDS patient in Chicago, takes Norvir in relatively high
doses along with an experimental drug from Boehringer Ingelheim.
Because he is participating in a clinical trial, his medicine is free.
But once the trial ends, Mr. Sharp said that he worried about how he
would pay for his medicines.
Many
AIDS groups have for years resisted criticizing drug makers' pricing
decisions because of their intense interest in encouraging more
discoveries. "Our lives depend on future research," said Lei Chou, the
director of the Access Project, an AIDS information clearinghouse in
New York City.
But
Abbott's surprise decision regarding Norvir, which it announced in
December, led to cries of outrage from AIDS groups across the country,
Mr. Chou said.
Cesar
Portillo, a spokesman for the AIDS Healthcare Foundation, the largest
nonprofit provider of H.I.V./AIDS medical care in the country, said
that Abbott's decision would result in even more patients having to
join waiting lists for care.
"To
take a drug that was approved in the mid-1990's and increase its price
by 400 percent to meet some marketing strategy is outrageous," Mr.
Portillo said.
An Abbott
spokeswoman noted that the company had not raised the price it charges
publicly financed AIDS assistance programs. But Lynda Dee, a member of
the Maryland AIDS Drug Assistance Program advisory committee, said that
many assistance programs not only provide drugs directly to low-income
patients, but they reimburse drug co-payments to patients with private
insurance. As Norvir's price rises, those co-payments will probably go
up, too, she said.
"Nobody's
saying they shouldn't have a reasonable profit, but to raise a drug's
price like this seven years after they've already made a fortune is
unconscionable," Ms. Dee said. "Nothing has united the AIDS community
like this in years."
Some
physicians who treat patients with H.I.V. have banded together to urge
their colleagues to avoid Abbott medicines when possible. "If there is
a choice in medicines, we are urging doctors not to choose Abbott
drugs," said Howard Grossman, an internist in New York City who is
leading the boycott effort. "In H.I.V., unfortunately, Abbott has a
monopoly. But in other areas, it doesn't."
That Norvir
was discovered with public funds only fuels the debate. Mr. Love has
petitioned the National Institutes of Health to take advantage of the
fine print included in grant bequests that allows the federal
government to insist upon "reasonable" prices for discoveries made with
federal money. These provisions have rarely been invoked by federal
health authorities, who fear any effort on their part to control drug
prices would lead drug companies to abandon collaborations with federal
health agencies.
Six
members of the House, most of them political liberals including the
Democrats Sherrod Brown of Ohio and Henry A. Waxman of California,
recently signed a letter to Tommy G. Thompson, the secretary of health
and human services, asking him to support the petition.
Yesterday,
John Burklow, a spokesman for N.I.H., said that the agency decided "to
provide a venue for public input on this issue," although the timing
and format of that input is still being discussed.
Alan
Holmer, president of the Pharmaceutical Research and Manufacturers of
America, the drug industry's trade association, said that neither
legalized drug imports nor government price controls would help AIDS
patients.
"The cost of
AIDS medicines today is what funds the research for the better
treatments and cures for tomorrow," Mr. Holmer said. "It's true that
other developed countries are free-riding on American research and we
need to address that, particularly in trade agreements."
Today's
meeting will be conducted between 9 a.m. and 5 p.m. in the Natcher
Auditorium at the National Institutes of Health in Bethesda, Md.
| | | |
| |
Employers Now Testing
Recruits For HIV
by John Bulloch
365Gay.com Health
Can
a perspective employer require you take an HIV test? That's the
question a lot of companies are asking as they see health insurance
costs spiral, and workers leave their jobs on long term benefits.
The
laws surrounding medical tests as a condition of employment are murky,
and in many areas people with HIV do not have job protections.
The
most famous case of a worker being fired because of their status is
Cirque du Soleil's Matthew Cusick. Even though the company's own
doctors cleared him to safely perform, Cirque du Soleil management told
Cusick that because he has HIV the company would not continue to employ
him. Lambda Leagal is suing Cirque in federal court under the Americans
with Disabilities Act.
Two
incidents in Canada are also being watched by legal experts and human
rights activists. Some Roman Catholic seminaries are testing
perspective applicants for the priesthood for HIV. For the church
it
is less a matter of health costs than "weeding out" gays.
The other involves the
Montreal Police Force which last week announced it would require all
recruits to have HIV tests.
"We're
looking at careers, very definitely that's a longer term view, and it's
better to have these sorts of issues sorted out right at the very
beginning," said Peter Yeomans, in charge of public security in
Montreal.
"A police person is called
into emergency situations where there is obviously injuries, open
lesions," he said.
Candidates
who test positive for the virus linked to AIDS will not be hired for
the police department. Officers who are already on the force will not
be tested.
But, any
test as a condition for employment could violate both federal and
provincial law. Yet, unless it is tested before a human rights
tribunal or in the courts, employers will likely get away with
requiring the tests.
©365Gay.com
Ltd® 2004
Many New HIV
Infections Acquired Heterosexually
NEW YORK (Reuters
Health) - Thirty-five
percent of all new HIV infections in the US are acquired through
heterosexual transmission, according to a report released Thursday by
the Centers for Disease Control and Prevention. Eighty-four percent of
heterosexually acquired HIV infections involved non-Hispanic blacks or
Hispanics and most cases were in females.
The
new findings, which are reported in the Morbidity and Mortality Weekly
Report, are based on analysis of HIV transmission data obtained from 29
states between 1999 and 2002.
During
the study period, 101,877 new HIV infections were recorded. By state,
the prevalence of infections acquired through heterosexual contact
ranged from 13 percent to 47 percent. Although a rise in heterosexually
transmitted cases occurred during the 4-year period, the increase was
not statistically significant.
Sixty-four
percent of the heterosexually transmitted cases occurred in females,
the report indicates. In terms of age groups, people 30 to 39 years of
age accounted for more than one third of such cases.
As
noted, the majority of cases acquired through heterosexual contact
involved minority ethnic groups. In contrast, the racial distribution
of cases non-heterosexually acquired, such as by intravenous drug use
or homosexual contact, was more equal.
"Prevention
and education programs targeting heterosexually active teens,
especially females and persons in certain racial/ethnic populations
should be developed," the CDC advises.
In addition, "barriers to
care and prevention services" for non-Hispanic black and Hispanic
populations "should be removed."
SOURCE: Morbidity and
Mortality Weekly Report CDC Surveillance Summary, February 20, 2004.
75,000
New Yorkers Have HIV/AIDS
by
365Gay.com Newscenter Staff
(San
Francisco, California) One percent of the total population of New
York
City, about 75,000 people, is known to have HIV/AIDS, but that is only
the tip of the iceberg say researchers.
A
report presented Wednesday at the11th Annual Retrovirus Conference
meeting in San Francisco says that the prevalence of AIDS in New York
has reached levels usually seen only in Third World nations.
Denis
Nash, an epidemiologist with the Center for Urban Epidemiologic
Studies, part of the New York Academy of Medicine, told the conference
that about 2.8 percent of all the men in New York City have HIV
infection or have been diagnosed with AIDS, and about 3.9 percent of
all men between the ages of 40 to 49 years have HIV/AIDS.
But,
Nash warned that those are the known cases. He told the
conference
that an estimated 25 percent of the people who live in New York and are
infected with HIV are not aware of their status. Those people are not
included in the totals. Nash said the actual total could be as many as
90,000.
The new figures, which were
developed after the state of New York required health officials to
report HIV cases.
According
to the World Health Organization, an infection rate of 1 percent is a
threshold at which government and civil services begin to feel the
pinch of the health crisis caused by the epidemic. That puts New York
City's epidemic on a par with half a dozen nations in Central and South
America, as well as some countries in Africa and Asia.
"Most
of the people with HIV and AIDS in New York," Nash said, "are in
concentrated groups, such as injecting drug users." In much of the
developing world -- where HIV infection rates are into double digits --
the explosive epidemic is transmitted by heterosexual contacts. In the
industrial world, drug abuse and sex between men fuel the epidemic.
Additionally,"
Nash said, "HIV remains a fatal disease in New York City despite the
state of the art medical care that exists for persons with HIV disease."
He
said researchers have found persons diagnosed and living with HIV/AIDS
in New York City die at a rate more than four times that of the rest of
the city's population. "HIV remains the leading cause of death among
New Yorkers aged 25-44 years and is the third leading cause of death
among non-Hispanic black and Hispanic New Yorkers of all ages,
following heart disease and cancer," he added.
©365Gay.com® 2004
HIV &
Civil Rights
A Report from the
Frontlines of the HIV/AIDS Epidemic
By Tamara Lange
Staff Attorney
ACLU AIDS Project
Over
the past two years, the ACLU AIDS Project interviewed over 40
community-based AIDS service providers (CBOs) around the country to get
a better picture of the civil rights and civil liberties issues facing
people living with HIV/AIDS.[i] The
survey cast a wide net in terms of geography, type of service provided
(medical, basic care, policy), and race, class, age, ethnicity, and
particular needs of clients. The results reflect what direct
service
providers already know from day-to-day experience: there is
a lot of
work to be done. That work requires better connections
between CBOs
and civil rights organizations like the ACLU. This report is
the first
step in the ACLU AIDS Project’s work to forge those
connections.
Discrimination
adds to the daily struggles faced by the growing number of people
living with HIV/AIDS in the United States – people who are
predominantly poor and disproportionately African American or
Latino/a. Almost every agency told us that the biggest
problems facing
their clients involve meeting basic needs – coping with poverty,
hunger, illiteracy, inadequate medical care, lack of transportation,
and homelessness. In addition to those basic needs issues,
people with
HIV face a series of critical civil rights
problems. Individuals
living with HIV/AIDS need to know their rights and need the resources
to advocate for themselves when their rights are
threatened. They also
need national legal organizations like the ACLU AIDS Project to enforce
their civil rights and civil liberties through litigation, public
education and legislative advocacy.
This
report provides a starting point for discussions among local providers
and national advocacy groups. Our findings are based on
interviews
with CBOs and their colleagues on the frontlines of the
epidemic. In
the next section, we outline the problems that need immediate
attention. The last section of the report describes how we
plan to
address some of the most pressing civil rights issues facing people
living with HIV/AIDS.
THE PROBLEMS
Stigma and Fear of Disclosure
Recent
estimates suggest that as many as 280,000 people living with HIV in the
United States do not know they are infected because they have not been
tested, and that only a third of people who know they are infected are
receiving care.[ii] CBOs
reported that many people avoid testing and treatment because they are
terrified about the potential consequences of a breach of
confidentiality: social stigma, rejection by loved ones, being evicted
from an apartment, losing a job, and suffering harassment or
violence. Because of that fear, more people get infected,
more people
get sick, and more people die.
Particularly
in rural areas and in African American, Latino/a and Native American
communities, people say that they are afraid of being abandoned by
their families and rejected by their churches. In the
Florida
panhandle, some churches ask members to leave the congregation if they
discover they are HIV-positive. In many rural areas, there
is still
widespread fear of casual contact and people still think of HIV as a
“gay disease.”[iii] In
Montana, approximately 50% of people statewide did not know the
possible methods of transmission. Very few people in these
areas are
open about their HIV status and most are afraid to use their own names
even with AIDS service providers. People in rural areas are
so
closeted about their HIV status that complaints of discrimination are
rare.
A
Dallas provider said many people are afraid that there is some sort of
national directory that lists every HIV-positive person’s
name. In an
AIDS 101 class, they get many questions about what happens to the
information when someone tests positive. Many people who use
anonymous
testing wait to access care because they are afraid to be put in the
database. Even for people who are proactive in seeking
medical care,
the fear of social retribution and discrimination is so extreme that
they are willing to travel from Alabama to Georgia to get tested or to
drive 350 miles in Montana for treatment.
Unfortunately,
the fear is not unfounded; violation of medical privacy was one of the
most frequently reported civil liberties problems faced by people
living with HIV/AIDS.
Privacy
Breaches
of confidentiality can and do unravel people’s lives, forcing them to
find new jobs, new schools, and new homes. Nearly every one
of the
providers interviewed reported serious violations of medical
privacy.
- In
New Mexico, a patient first learned that he was HIV-positive from a
receptionist in front of a waiting room full of people.
- In
Fort Worth physicians sometimes tell a family member about a person’s
HIV status before telling the client. Many providers think
HIV-positive people “should be forced to tell others.”
- In
Florida, people refuse to pick up their medication from the health
department because they are afraid someone will see them.
- A
Minnesota provider said most people do not understand the difference
between confidential and anonymous testing and need to know what
information will be released to insurers, employers, and family
members.
- A teacher in
Florida informed an entire class that a particular student was
HIV-positive.
- A family
counselor in Alabama told the school that a child’s mother was
HIV-positive.
- A school in
Detroit threatened to disclose a child’s HIV status to all teachers and
administrators.
- Police
in St. Louis found a young man=s HIV medication when they searched his
car and disclosed his HIV status to his father, saying the father had a
right to know.
- The
New York City Department of Health disclosed a person’s HIV status to
his employer in the course of making partner notification
calls.
- A
receptionist at a nursing home in Texas told a woman that the patient
holding her baby might give it AIDS.
- A
university hospital in New Mexico sent a client’s bill to a collection
agency and disclosed the client’s HIV status on the bill.
- Medical
charts in Fort Worth are labeled on the outside with a sticker
indicating that the patient is HIV-positive.
- Clinic
employees and pharmacists in Florida disclosed people’s HIV status to
others in the waiting area by shouting out information about their
medications and identifying which doctors they were coming to see.
- In
small towns, people are often in serious danger if their HIV status is
revealed. One provider had to help three or four people get
out of a
small town in Texas because of hate mail and vandalism of their
homes.
These
incidents are likely the tip of the iceberg, for even people who
reported egregious breaches of confidentiality were typically too
afraid to confront the problem if it meant disclosing their HIV status
to more people. All over the country, health care providers,
pharmacists, law enforcement officials, government employers and
schools are violating state and federal laws by disclosing HIV status
without permission.
Names Reporting, Criminal Prosecutions
and Mandatory Testing
Fear
about unauthorized disclosure appears to be growing more acute now that
most states require testing agencies to report the names of people who
test positive or who seek treatment. Several CBOs expressed concern
that people are avoiding testing and treatment specifically because of
fear about the fact that the government keeps a list of people with
HIV/AIDS.[iv]
Public
confidence in the local health department is damaged almost irreparably
if people perceive a link between efforts to track the identities of
people with HIV and efforts to prosecute people for transmission of
HIV. Unfortunately, that perception already exists in at
least one
state. In South Dakota, after several widely-publicized
prosecutions
of men accused of exposing their sexual partners to HIV, the
legislature authorized the health department to release a person’s name
and HIV-status to the state prosecutor whenever the department thinks a
person may have been exposed to HIV intentionally or may have exposed
someone else intentionally. In other states, enforcement of
reporting
laws undermines public confidence in health care providers.
Discrimination
Despite
some advances, discrimination against people living with HIV is still
pervasive and affects virtually every aspect of life from employment to
housing to access to basic medical care.
Employment
Most
service providers had stories of HIV/AIDS-based job
discrimination. A
CBO in Tallahassee receives at least 10 complaints a year from
people
who say they were fired because of their HIV status. An
organization in Texas receives an average of one complaint a week
about
firings or demotions based on HIV status. People who take
time off for
medical care often lose their jobs, either because of absences or
because they are forced to disclose their HIV status and are then
fired. In Miami, most clients report that they are afraid of
discrimination at work. A St. Louis provider said workplace
discrimination is rampant. One Texas employer asked an
employee to get
an HIV test because the employee was gay and had been sick.
Much
of the discrimination reflects employer ignorance about established
law. Employers in Detroit and New York ask illegal questions
on job
applications, in interviews, and after making a job offer, including
“what medications are you taking,” and “have you been on
disability?” A flight attendant had a job offer retracted
because he
failed to list HIV medications on an application form but disclosed his
HIV status after being hired. Providers in St. Louis
reported that
employers don’t view HIV as a disability and that most people assume
that anyone out as gay is HIV-positive. In Dallas and Ft.
Worth, CBOs
said it is “a given” that disclosure means a decision not to hire,
particularly in the restaurant business. One Texas employer
even
required an HIV-positive employee to use a different bathroom, to eat
in a separate location, and to wear long-sleeved clothing in the
summer.
Child Custody and Visitation
Several
providers reported that clients who were HIV-positive were prohibited
from visiting their children, lost custody of their children, or were
prohibited from providing foster care or adopting
children. One
provider in New Mexico said an HIV-positive man initially lost custody
because of his HIV status and had to fight to obtain
visitation. In
Texas, several HIV-positive clients were denied visitation with their
children. Another person was told that the presence of one
HIV-positive child would bar future placement of children through
foster care or adoption.
Medical Care
Medical
and social services play a critical role in the daily lives of many
HIV-positive people, but because of ignorance and discrimination this
lifeline is often dangerously unreliable. All over the
country, from
Alabama to California, doctors, dentists, skilled nursing and
psychiatric facilities, and drug treatment centers refuse to provide
services to HIV-positive patients.
Emergency
medical providers in Dallas and Fort Worth refuse to treat people who
are HIV-positive, and police officers wear gloves to transport
HIV-positive detainees. Migrant workers with HIV in South
Florida are
turned away from hospitals. At the county hospital in
Dallas, people
living with HIV/AIDS are refused service on a routine basis; instead
they are referred to a nearby HIV clinic, even for standard care like
cleaning a small cut. Staff at one Texas county hospital
asked
employees from an AIDS service program to move one patient with HIV to
a gurney so that hospital staff would not have to touch him.
Another
hospital in rural Texas tried on several occasions to send HIV-positive
patients seeking emergency care to the local AIDS service organization,
saying, “we’ve got one of yours.” In the worst cases, people
die as a
result of discrimination in medical care. One man died a
week after he
was turned away from a Texas emergency room; although the man had no
transportation, the doctor wrote on a prescription pad “go to JPS,”
referring to another hospital an hour away that had an AIDS
unit. In a
rural Texas hospital, a patient who was admitted because of vomiting
and diarrhea was found lying in a hospital bed with nothing but a cup
of water on the table. Staff from an AIDS service
organization
delivered medication to him and asked that he be given an IV and the
appropriate medications. They returned the next day to find
the man in
the same neglected state. By the time he was transferred to
another
hospital it was too late, and he died there.
Skilled Nursing, Drug Treatment,
and Psychiatric Facilities
Discrimination
in residential nursing, drug treatment, and psychiatric facilities
leaves many people with HIV/AIDS without any way of obtaining adequate
care. Many facilities blatantly refuse to accept patients
who are
HIV-positive; others have unspoken rules. One AIDS
organization tried
for three months to get a client into a skilled nursing care facility,
calling almost every home in Arizona. Even in Los Angeles,
many
nursing homes and psychiatric facilities will not take clients with
HIV. Some nursing homes say they do not have enough
experience to care
for patients who are HIV-positive, even when they are entirely
asymptomatic.
In
New Mexico, inpatient drug treatment facilities will not take anyone
who takes medication of any kind, and some facilities say outright that
they will not serve people who are HIV-positive. Several
drug
treatment facilities in Texas refuse admission to anyone who has had an
opportunistic infection within the past 18 months. Others
impose
strict requirements for health status before allowing
residence. In
east Texas, one program has refused patients who are HIV-positive,
arguing that they do not have access to a large hospital and that their
on-site doctors are not equipped to treat people with HIV.
Housing and Shelters
People living
with HIV and AIDS are particularly vulnerable to housing
discrimination. Because
a disproportionate number of people living with HIV/AIDS are poor,
access to housing is a critical problem that is compounded by
discrimination.
Organizations
in Missouri, Arkansas, Florida, and Alabama said housing discrimination
based on HIV status is commonplace. One landlord in Arkansas
found out
his tenant was HIV-positive and tore up the lease. Landlords
often
refuse to accept checks from social service programs, making it
impossible for HIV-positive tenants receiving government subsidies to
rent from them. In Dallas, even certain apartment complexes associated
with social service programs refuse to allow anyone with HIV to live
there. Neighborhood associations in Alabama and New Mexico
recently
opposed issuance of city and county permits for new housing facilities
for people living with AIDS.
Discrimination
in homeless shelters forces people to choose between adequate medical
care and shelter. The Salvation Army shelter in Dallas
requires people
to turn in their medication to stay there, but does not allow
sufficient access to the medication for residents to adhere to their
regimens for HIV drugs and psychotropic medication. Gay
bashing and
discrimination continue to create problems at St. Louis shelters,
making their services unavailable for many clients.
Medical Care in Rural Areas
In
rural areas, even people who know that they are HIV-positive frequently
receive no medical care. Many people in small communities
and on
reservations refuse to access services close to home because of fear of
discovery. In Montana, this is particularly problematic for
Native
Americans because Indian Health Services will not pay if someone goes
outside its system. Rural providers in Texas reported that
in some
parts of Oklahoma people who test positive are sent to a gay nurse
practitioner with no resources to provide HIV care. In the
Florida
panhandle and in rural Texas, many patients are still being treated
with AZT because doctors have never heard of triple combination
therapy. Others are receiving no medication at
all. For those
patients who do get triple combination therapy, treatment education is
often nonexistent. As a result, many people continue taking
one drug
when they run out of the other two, or, for financial reasons, they
take their drugs once a day instead of three times a day.
Prevention
education is also sorely lacking in rural areas. A recent
study on
high-risk sexual activity in rural areas found that at least one-half
of sexually active men and women with HIV engaged in practices that
created a high risk of HIV transmission even though one-third believed
that their sex partners were HIV-negative.[v]
HIV in Prisons and Jails
Failing
to adhere to a strict schedule when taking HIV medications can make the
virus resistant to the medication, so depriving inmates of medication
is a matter of life and death. Yet all over the country CBOs
reported
that prisons and jails are depriving inmates of medication, skipping
doses, and providing one standard set of medications for triple
combination therapy, even for inmates with resistance to one or more of
the three drugs.
AIDS
organizations in Los Angeles and Michigan reported that prisoners
have
a hard time getting medication and are subjected to dangerous
interruptions in medication. An incarcerated man in St.
Louis said he
was deprived of HIV medication for four months and pre-trial detainees
and arrestees frequently complain that they are not receiving their
medications. A county jail in Texas reportedly refused to
provide
medication to one inmate for over two months, asserting that the local
AIDS services organization was responsible for getting him
medication. Several Texas prisons switch inmates to cheaper
medications despite the danger that the virus will develop resistance
to the medications that are keeping the inmates alive.
The
most widespread problem is disruption in medication upon arrival at or
departure from jail. In Dallas, the county jail reportedly
confiscates
medication on arrival and denies treatment until the prison doctor
diagnoses the inmate and writes a new prescription, even if medication
is provided to the jail by an AIDS service organization. In
Santa Fe
and Gallup, people with HIV who have been arrested and held over the
weekend have begged for their medications to no avail because the jail
does not see non-adherence as a medical emergency. Nearly
everywhere,
prisoners who are HIV-positive are released from jail without enough
medication to tide them over until they can obtain follow-up
care. It
often takes as much as 45 days to qualify for Medicaid services after
release from prison. In Dallas, it takes 60 days to get an
appointment
at the county hospital.
In
addition, many inmates with HIV are subjected to longer prison terms
based on discriminatory policies that exclude them from rehabilitative
programs, including work release programs, because of the cost of
medical care.
Immigration and Language Barriers
Documented
immigrants have difficulty accessing housing services in
Dallas. Many
eligible immigrants in Miami do not receive food stamps or SSI because
they are afraid of being deported and are afraid the government will
tell their families that they are HIV-positive. In New York,
a
provider reported that one client was eligible for food stamps for many
months but did not know because he could not read the form, which was
not provided to him in Spanish (although the benefits cut-off letter
was provided in Spanish).
Undocumented
immigrants living with HIV find it difficult to obtain even basic
health care. In Texas, CBOs reported that undocumented indigent people
are turned away from for-profit hospitals and cannot get treated at the
county hospital because of an internal policy of refusing to use
indigent funding for undocumented patients. Programs in
Detroit that
are supposed to provide drug treatment on demand require Social
Security numbers, making the programs inaccessible to undocumented
immigrants.
Needle Exchange
There
are very few needle exchange programs, and hence very little education
about or access to clean needles as a way to prevent the spread of
HIV. Those programs that do exist are in imminent danger of
having
their funding pulled. New Mexico is the only state where
providers
talked about the availability of successful needle exchange
programs. Even in the traditionally conservative city of
Roswell,
police have been open to needle exchange. Providers in
Detroit and
Missoula identified the ban on federal funding of needle exchange as a
substantial problem. Of the groups interviewed, only one
provider had
needles and works-cleaning kits in public view with instructions
clearly posted, and that provider explained that they were dismantling
the program because of funding problems.
Censoring Education and Prevention
Meanwhile,
the federal government is not focused on the epidemic spiraling out of
control in poor communities of color or on how to protect young men who
have sex with men. Instead, it is focused on preventing
young people
from learning the facts about HIV by concentrating funding in programs
that teach only one message – abstinence until marriage – and that
often mislead young people into thinking that condoms and other
safe-sex practices are useless in preventing HIV transmission.
HIV
service providers say the focus on abstinence is having a chilling
effect on AIDS programming. Access to works exchange and
bleach kits
is limited or non-existent in most areas. Many providers
believe the
federal government has been auditing well-known CBOs that provide
prevention and harm reduction education for gay, bisexual, and
transgender clients as a scare tactic to discourage all CBOs from
discussing safe sex and providing other meaningful services to that
disfavored group of people living with HIV/AIDS.
Encouraging
abstinence among young people may be a valuable way to build
self-esteem and to promote emotional intimacy between young couples,
but advocating abstinence until marriage is meaningless for gay and
bisexual teenagers as long as same-sex couples are prohibited from
marrying. Talking about abstinence without providing
accurate
scientific information about how to minimize the risk of sexual
transmission is dangerous and shortsighted. The government
should be
teaching teenagers and young adults how to avoid infection instead of
closing its eyes to the reality that most of them are not choosing
abstinence.
EXPLORING SOLUTIONS
The
survey of CBOs provided an overview of the contexts in which people
living with HIV/AIDS confront discrimination, and an idea of which
institutions are ignoring anti-discrimination and other laws that
protect people with HIV. Some of the problems reflected by
the survey
do not generally lend themselves to the skills of lawyers, though it is
important for us to fully understand what the people we are trying to
help are facing. Other problems may suggest the need for a
tactical
shift in the movement, increasing the emphasis on education, advocacy,
and enforcement over impact litigation and policy work aimed at
creating new rules. The ACLU AIDS Project has identified
several areas
that seem the most pressing, both in terms of the number of people
affected and the seriousness of the harms they
face.
- Discrimination
in Residential Facilities. Refusing
to treat people with HIV is illegal, yet the survey suggested that many
nursing, drug treatment and psychiatric inpatient facilities routinely
refuse admission to people with HIV. These violations of the
law are
particularly distressing because the issue has been the subject of
considerable industry-wide education. The Project is
interested in
finding the right case to challenge this practice and is seeking
partners in new efforts to educate key players in inpatient care
industries.
- Deprivation
of Parental Rights. Several
providers reported that people with HIV are being denied custody of
their children and even visitation with their
children. People are
also categorically excluded both as foster parents and as adoptive
parents solely because they or their family members are
HIV-positive. The ACLU AIDS Project is interested in
representing
people whose families are being torn apart by this sort of illegal
discrimination.
- Discrimination
in Food Service and Health Care Jobs. Many
employers, including some major food, retail and drug chains, are
asking unlawful questions about disabilities and health on their job
applications. Employment discrimination appears to be
particularly
concentrated in food service and health care, reflecting continuing
ignorance about the mechanisms for HIV
transmission. Litigation and
public education to challenge myths about casual contact transmission
are critical components in efforts to stop employment discrimination
and reduce social stigma.
- Censorship. Local,
state and federal governments may be breaking the law when they censor
or distort HIV prevention messages. Schools teach students
incorrect
information about how to prevent HIV transmission (including that
condoms do not work), and other parts of the government provide
inaccurate facts about HIV transmission and prevention. Such
misinformation appears to be a significant problem in abstinence-only
until marriage education programs in schools. Censorship may
also take
the form of restrictions along the lines of the federal government’s
faith-based initiative. For example, an HIV service provider
may be
denied a government grant because of funding restrictions that require
affiliation with a faith-based organization. Likewise, the
government
may cross the line and allow faith-based CBOs to use government money
to disseminate incorrect or distorted HIV treatment or prevention
information based on the organization’s religious views.
- Violations
of Privacy. The
law in most states already provides protection for medical privacy, so
privacy violations appear to call primarily for education and
training. The ACLU AIDS Project seeks partners in efforts to
work with
professional groups on peer education and to petition regulatory
authorities to enforce the law. We are also interested in
potential
cases that could be used to reach specific audiences such as
pharmacists, police officers, doctors and school administrators.
- Discrimination
in Medical Care. The
survey turned up alarming stories about people living with HIV/AIDS
being denied critical medical and dental treatment. Over
five years
ago, the ACLU AIDS Project finished one of the first key cases under
the Americans with Disabilities Act, which established that this kind
of discrimination is illegal. We are interested in bringing
cases that
would initiate widespread public discussion about why it is both
illegal and morally wrong for hospitals to refuse to treat people who
are HIV-positive.
- Inadequate
Care in Jails and Prisons. All
over the country, prisoners and jail inmates are deprived of their HIV
medications when they are first incarcerated and are denied a
transitional supply of medication when they are released. We
are
interested in bringing lawsuits that would highlight the obligation of
all jails and prisons to provide medication upon release and to provide
prompt access to medication upon admission. One
non-litigation effort
we hope to build on was started by the ACLU of Southern California,
which worked with the Los Angeles County Jail to educate its intake
officers about which drugs were approved medications for HIV. This
enabled inmates to keep their HIV medications and helped avoid
interruptions in care.
CONCLUSION
In
addition to making our impact litigation and public education work more
effective by partnering with CBOs, the ACLU AIDS Project will focus
significant resources on creating tools that CBOs and people living
with HIV/AIDS can use to make the most of good laws that already
exist. As with any toolkit, the goal is to provide simple
do-it-yourself advocacy information.
If
you are interested in working with the ACLU AIDS Project on a
particular issue, or if you have heard about a problem that we might be
able to address, please let us know. We look forward to an
ongoing
collaboration.
ACLU AIDS Project
125 Broad Street, 18th
Floor
New York, NY 10004
(212) 549-2627
HIV@aclu.org
[i]
In order to protect the participating organizations from potential
political retribution, we have not identified them in this report. We
are deeply indebted to the people at each organization who took time
out of their busy schedules to meet with us.
[ii]
P. L. Fleming, R. H. Byers, P. A. Sweeney, D. Daniels, J. M. Karon, and
R. S. Janssen “HIV Prevalence in the United States, 2000,” CDC (Atlanta,
GA) (estimating
that one third of 670,000 persons diagnosed with HIV/AIDS may not be
receiving ongoing care, that 180,000-280,000 people are undiagnosed,
and that 400,000-500,000 people living with HIV may be untested,
untreated, or both) (available at http://63.126.3.84/2002/Abstract/13996.htm).
[iii]
As a result, symbolic stigma based on preexisting attitudes toward
groups of people disproportionately affected by HIV is compounded by
instrumental stigma, which is based mainly on fear of
HIV-transmission. See Herek, G.M., Capitanio, J.P.,
&
Widaman, K.F., “HIV-related stigma and knowledge in the United States:
Prevalence and trends, 1991-1999,” American Journal of Public Health,
92(3), 371-377 (2002).
[iv]
It is difficult for CBOs to reassure their clients given that 35 states
now have name-based reporting and five states have name-to-code based
reporting, while only eight states and the District of Columbia have
code-based reporting. See “50 State Comparisons: HIV
Name/Code Based Reporting Policies” (available at http://www.statehealthfacts.kff.org/). The
reauthorization of the Ryan White CARE Act of 2000 created additional
incentives for states to increase HIV name reporting and partner
notification programs; “ultimately driving more people away from HIV
testing.” See Collins, Chris. “HIV/AIDS
Surveillance and Reporting in the United States,” HIV InSite
(February 2001) (available at
http://hivinsite.ucsf.edu/InSite?page=kb-08-02-02).
[v] Heckman, T. G., et al., “HIV
transmission risk practices in rural persons living with HIV disease,”
30 Sexually Transmitted Diseases 134-136 (2003).
 Liberals and disability rights:
Why don't they 'get it'?
By Mary Johnson
During the debate
over Terri Schiavo last
fall, disability activists and scholars groused about both
right-to-life and right-to-die advocates not understanding disability
rights issues. It was just the latest round of a recurring tune:
activists say progressives and conservatives are equally dense when it
comes to understanding, much less embracing, disability rights.
Liberals,
in particular, came in for a drubbing. Whether called progressives,
leftists, or liberals, these are folks who should understand and
support disability rights issues and make them part of the liberal
rights agenda, said almost everyone we talked to. But they don't.
It's
"downright weird," says Michael Bérubé, whose 1996 book, Life As We
Know it,about raising disabled son Jamie, became a bestseller.Bérubé
calls liberals "oddly reluctant to see disability rights as part of a
program of egalitarian civil rights."
"What happened to the liberal clergy that
supported the civil rights movement in the 60s?" asks Mainstream magazine website
editor Bill Stothers. "You don't see them on ADAPT marches."
A
month before the Schiavo fiasco, there was the Free Our People march.
For two weeks, stalwarts with the movement's direct action arm, ADAPT
(whose all-purpose acronym most recently has served to mean "American
Disabled for Attendant Programs Today") marched from Philadelphia to
Washington, DC to push for passage of the Medicaid Community-Based
Attendant Services and Supports Act, or MiCassa.
"The left doesn't pay them much attention,"
Astra Taylor wrote, reporting on the march for The
Nation's online edition.
Taylor's sister Sunny, a wheelchair user, made the 144-mile trek; Astra
joined on the march's last day to file her report. It did not seem, she
wrote, that onlookers watching the group roll through the DC suburbs
"saw the connection between these 200 wheeling radicals and their own
lives."
Many leftists, says writer Marta Russell,
simply think there is
no movement; some believe the disability rights movement is too small
to qualify as a real "movement." There are more substantive reasons as
well. "Some leftists don't believe disability is an oppression that
belongs on a theoretical par with race, gender or class. They may think
disabled peoples lives are difficult and social justice lacking but
they don't see basic underlying institutional relations at work when it
comes to disablement."
Russell, a longtime disability
activist and author of Beyond Ramps: Disability at the End of the
Social Contract, takes pains to point out that she is talking here
specifically about "leftists." Although people usually use the terms
"liberal," "leftist" and "progressive' interchangeably, there is
distinction, she says. By "leftist," Russell means "anti-capitalist":
"Liberals think capitalism is largely a beneficial thing needing but a
few reforms to iron out the crinkles," she explains. "Lefties think
capitalism is the problem." However, her comment that leftists "don't
see basic underlying institutional relations at work when it comes to
disablement" applies to progressives and liberals as well.
"I wish they understood that it was civil
rights," says Cyndi Jones, head of the Center for An Accessible
Society. "Talk to progressives or liberals (which I use
interchangeably): they just don't see it as civil rights."
Jones
talks about attending progressive media conferences and being the only
one there concerned with disability rights. "They never think about
making sure the meeting site is accessible, either," she says. " When
you complain, though, you're seen as a 'whiny cripple.'"
An
activist invited to be on a liberal talk show on public television
finds the producer resisting the need for a sign-language interpreter,
even when the activist offers to pay the cost. A progressive bookstore
owner provides a ramp to a locked entrance and offers a doorbell; he is
offended when local activists protest the segregated treatment.
Liberals involved in election reform organize to stop new accessible
computerized voting machines, arguing that they're open to fraud.
"Public
employee unions all over the country have fought against -- and in many
states have succeeded in stopping or slowing down -- any movement to
close or downsize facilities that warehouse people with disabilities,"
says ADAPT's Bob Kafka, writing
on ZNet.
Liberals
"may understand that a ramp is needed or that Braille is appropriate;
they might even think of it as a rights issue," says Diane Coleman.
"But they say, 'the government should have taken care of that.' They
see it as a government responsibility, but not really as basic civil
rights. And that's about the best I can say in terms of the level of
understanding . Once you get beyond the very simplistic access issues,
we find a tremendous lack of understanding."
Coleman,
who runs the Progress Center for Independent Living in suburban
Chicago, says that when it comes to people living in their homes rather
than institutions, liberals see the issue "as one of social services,
government programs -- not as a civil rights issue at all." Liberal
decision-makers in state legislatures and administrative branches of
government "are clearly looking at these issues as social programs --
without an understanding of the rights basis at the core of the issue.
"Our issues are seen as medical issues," she
adds.
"Neither
the Left nor the Right sees disability as a rights issue," agrees Not
Dead Yet research analyst Steve Drake, who rather than "medical issues"
uses the term "clinical issues" --"who gets to live where, who gets to
get education, who gets to work where." And folks turn to professionals
instead of us to learn what disabled people "need," he said.Bérubé is
getting at something similar in a essay in the Spring,
2003 issue of Dissent
when he writes that "our society's representations of disability are
intricately tied to, and sometimes the very basis for, our public
policies for 'administering' disability."
The Left hasn't done the theoretical work
needed to understand disablement, Russell says.
"The
disability community is still not recognized as part of the project of
diversity and multi-culturalism in American theater," says Victoria
Lewis, "in spite of the fact that the disability culture offers a
radical critique of key democratic concepts such as autonomy,
community, care-giving, and quality of life." Lewis, who founded the Other
Voices project at the Mark Taper Forum in Los Angeles, now teaches
theater at University of Redlands. Her comment can be made of almost
any field of endeavor.
One
of the reasons leftists don't "get it," Chapman U. political science
professor Art Blaser thinks, is that they "tend to prioritize
inequalities and reason, 'if I fight most of them isn't that enough?'"
For a long time, sexism wasn't considered important to the Left, he
says. Nor was homophobia. Things started to change when women leftists
themselves began feeling gender inequality and gay leftists came out of
the closet. 'We're not there yet," he adds, echoing Russell's point
that the disability movement is not only not large enough yet but that
leftists who have disabilities by and large do not seem to identify as
disabled and thus do not force the Left to take on the issues. "The
second wave of feminists came out of the Student Nonviolent
Coordinating Committee and CORE, she points out, "and they drew
explicit parallels to Black Power."
"Leftists
have the same problem everyone else has with new civil rights
movements," says philosophy professor Ron Amundson of the University of
Hawaii. "They believe in the same rights and protections for
'everyone', but they're not sure who 'everyone' includes. Thomas
Jefferson didn't include slaves in his 'everyone,' for example.
"I
was on the fringe of the anti-war movement in the 1960s, and the
leftist men of that era were mostly male chauvinist pigs, just like
feminists said we were." They needed to broaden their analysis of
oppression to include women back then, he continues, and "leftists
today need to broaden their concept of 'everyone' to include disabled
people." This is "no more radical than broadening it to include women
and non-white races." But, he adds, including women took lots of
agitation from women themselves.
Historically, says Blaser,
going back to the roots of the term "leftist" from where people sat in
the early days of the French parliament, "parties on the left generally
believed more in equality, science, community, cosmopolitanism,
universalism, good human nature and the potential of government to
improve the human condition." For most liberals and progressives in
general today, he says, there's "an uncritical optimism about
technology as the force for making a brilliant, egalitarian future.
That means that you need to make deviants fit --or if they won't, you
use electroshock or other scientific methods to 'help' them. And if
they refuse to be helped. there's something wrong with them. Doing this
means creating a state that doesn't accept independent living."
The
progressive era in America politics paralleled the rise of the freak
show, Lewis reminds us. "The two most frequent kinds of people
presented as freaks were 'normal' non-Westerners, people of color, and
'abnormal' Westerners, disabled people."
She
continues, "Cultural icon Alexander Graham Bell, touted for his
dedication to the deaf, believed that sign language was evil and would
result in a rise of depravity in the deaf people. Bell insisted that
the deaf must be normalized by oral education and learn to speak."
In
the socialist and communist Workers Theater Movement, Lewis adds, "the
disabled figure is most vigorously employed as the victim of capitalist
wars or inhumane factory practices, and is used to arouse pity and
engender guilt."
Some
would argue that while liberals don't understand the disability
perspective on rights and access, they DO understand the disability
rights take on "assisted suicide" -- they just don't agree with it.
Bérubé
suggests that it's "a genuine philosophical and political disagreement
about the value and meaning of autonomy." "There are some liberals who
know perfectly well that persons with disabilities are no less worthy,
as humans, than any other persons," he says, but "who support prenatal
screening and euthanasia anyway, on the grounds that individuals'
autonomy over such decisions must be respected, and that there is no
transcendent moral value in (a) compelling people to bear children
against their will or (b) compelling people to continue to live if it
can reasonably be ascertained that they do not wish to do so."
In the May,
2003 New Mobility,
Barry Corbet looked at that right-to-die argument for autonomy.
"Disability rights are about autonomy and self-determination," he
quoted the late Drew Batavia as pointing out. "Why shouldn't that
freedom of choice extend to end-of-life decisions?" Batavia, a disabled
man and one of the founders of the right-to-die group Autonomy, argued that people
with disabilities should be given the choice to end their lives -- with
assistance, if need be.
But
"the current state of institutionalized prejudice against people with
disabilities turns that choice into no choice," Corbet went on,
explaining the reasons behind Not
Dead Yet's
opposition to that idea, which he concluded makes a great deal of
sense. "Because nondisabled people seem to fear disability more than
death. Because doctors are fallible in diagnosing and treating
depression and estimating life expectancy. Because the current rush to
cut health-care costs conflicts with our need for lifelong care."
"The
problem is that our desires are so malleable and manipulable,"
disability rights activist and author Harriet McBryde Johnson told
Corbet. "You know how easy it is to internalize other people's
expectations, how exhausting it can be to oppose them, especially when
you're sick. What we confront usually isn't homicidal hate, it's that
pervasive assumption that our lives are inherently bad. That attitude
can wear us down to the point where we want to be killed."
"Since
virtually all people who request hastened death have old or new
disabilities, we're essential to the debate," writes Corbet.
"Death-with-dignity laws are about us."
"The word 'dignity' derives from the Latin for
'worthy': that which is deserving of social respect,' wrote John Kelly
in an article
for Ragged Edge.
"But while it may look like it belongs to the individual, 'dignity'
really comes from the shared judgments of other people. For there to be
any general agreement on what dignity means, this must be so.
"Dignity
is in this way just like its opposite, disgrace, which also comes from
others' judgments," he writes. "Titles of existing and proposed
assisted-suicide laws prominently display the word 'dignity' -- for
example, Oregon's 'Death with Dignity Act.' To preserve dignity in such
a situation, to stay worthy in the eyes of others, demands that
autonomy and control be reclaimed by dying. And since dignity seems to
carry courage in tow, escape from a humiliating circumstance gets
characterized as a courageous act of the will. In fact, the only will
on display is the social one."
"Why
do we 'respect' the suicidal wishes of disabled people, yet treat the
same wishes of nondisabled people as cries for help?" asks Corbet.
Activist
Eleanor Smith made the same point in a letter to MS magazine over a
decade ago: that a group like the National Organization for Women
"rightly assumes that a gay teen suicide rate triple that of non-gay
teens is an unacceptable result of homophobia, not a result of rational
personal decisions" but that "NOW officially and actively supports the
'right to die' for old, ill, and disabled people."
"If
suicide is such a great 'choice' then why not offer it to everyone --
including teens distraught about acne, middle aged ABs who've lost
their job, women who've shown they aren't good at killing themselves
(most women who attempt fail, most men who do so die), and of course
those who are incarcerated?" asks Carol Cleigh. Asking this question
"usually gets the lefties to thinking about who gets what 'choice' in
our society and why," she says. "Then we can start discussing why it is
discriminatory to offer this 'choice' only to members of one minority
group -- us."
"Back
in the early 1980s, when the ACLU was fighting for the so-called right
to die for Elizabeth Bouvia, the 26-year-old woman with cerebral palsy
who'd had a miscarriage, a marriage breakup and wanted a hospital to
cooperate in starvation, the ACLU was also fighting to keep death-row
inmate Gary Gilmore from halting his appeals," says Coleman. "They
argued that he would be committing suicide, but that it would not be
truly voluntary because he was affected by being in prison." She was "a
card-carrying member of the ACLU in L.A. at the time," she says, but,
frustrated that the ACLU would not see the parallels in the two
situations, she eventually resigned.
"One
problem with American leftists is that their ideology includes a dose
of libertarian thought mixed in with their social conscience," says
Amundson. "And they don't notice the difference between their
social-conscious-based beliefs and their libertarian beliefs. They tend
to be libertarian on things like drug use and sexual morality, on the
theory that these crimes have no victims.
"When
they start to recognize that social policies actually do have social
consequences and victims (because drug addiction harms people, or
certain kinds of sex are exploitative) they may start to reconsider,
and their socially-conscious tendencies may allow them to accept social
restrictions on exploitation.
"At the moment,
leftists are libertarian on things like assisted suicide," he
continues. "They don't notice it -- they think they're thinking
'progressively.' But they're only buying the childish 'you're not the
boss of me' doctrine of libertarianism."
Coleman
points out that few liberals have "taken their understanding of
health-care issues and applied it" to the context of what she calls
"legalized medical killing." Among progressive organizations working
for healthcare reform, she says, "the first reaction they have is that
assisted suicide and 'right to die' issues are a matter of personal
choice. They've bought that rhetoric.
"These are
people who know that the system is willing to kill for money; that's
what they deal with every day in their advocacy work; but it takes a
discussion, it takes connecting the dots for most of them to see why
someone like me, someone severely disabled, might have a problem with
legalized medical killing and might see it as not so terribly
compassionate or progressive."
Disability
rights leaders are fond of pointing out that disability rights appeals
to both liberal and conservative strains in American government. That's
the good way of looking at it. A different analysis, which Russell
offers, is that the conservative rhetoric used by disability rights
leaders has distanced leftists from the movement, from seeing it as one
with other efforts to end oppression.
"The
disability rights movement's history is clouded by right-wing ideology
and rhetoric that doesn't appeal to the left," says Russell. "In the
name of 'independence,'" some disability rights leaders have "attacked
the welfare state" -- that is, the system of providing disability
benefits -- "as creating dependency for disabled people."
Leftists,
she says, believe society should provide certain benefits to every
human without obligation. Disability movement leaders in the 1980s were
more interested in self-reliance and individualism, she says. "The
disability rights movement was big on government not interfering in
disabled people's lives," in "drawing attention to the high public cost
of dependence on disability benefits" and arguing for the Americans
with Disabilities Act "in terms of cost effectiveness.
"Those
at the top of the movement hierarchy adhered to the line of personal
responsibility, independence, rugged individualism -- but without a
clue of what that meant under capitalism," says Russell. "Their
rhetoric of 'independence' was void of analysis of capitalism, the
market, labor relations, perpetual unemployment" -- all issues she
deals with in her book.
Drake says neither the
left nor the right truly claims disability issues as their own. Both
"are really just invested in their broader culture war -- with neither
side seeing us as part of the culture they're defending. We're simply
collateral damage.
"Liberals say, 'we support the
social programs that you depend on, that you agree with -- and because
we do that, we should have your unqualified support, even when we
support every 'better dead than disabled' cause that comes along.'
Folks on the right say, 'Look, we're out there on the protest line in
Florida; we're fighting for the lives of people like Terri Schiavo, so
we should get your unqualified support, no matter how much we cut the
social programs you need to function and even survive.'"
Maybe
the reason progressives hold the views they do about the right to die,
muses Amundson, is "because it's so scary for a non-disabled person, on
the left or right, to imagine themselves being disabled."
Bérubé
wonders much the same thing about liberals' reluctance to get behind
the issues of access and disability rights in general. He says that
precisely because a nondisabled person can become disabled, they are in
denial. And "there's an odd thing about being in denial, you know," he
says. "When you're told you're in denial, you tend to deny it."
Those
we talked to told us how difficult it was -- "lonely" was how more than
one described it -- to push to get liberals to take up disability
rights causes.
"It's kinda like bein' the last kid picked for
the kickball team," wrote
MaryFrances Platt. "Sometimes you get to be on
the team, but everyone knows you're not really welcome. One can be
happy about being on the team, but there's always that mortification at
being last."
When she works on healthcare issues
with progressives, says Coleman, "some seem to eventually 'get it' --
but most don't. "I don't spend a lot of time talking with them about it
because it's uncomfortable," she says. " I don't feel excluded or
ousted from these groups; I continue to have my involvement welcomed."
But most of them see her leadership of Not Dead Yet as peripheral, she
says; that "while they understand that I've got this 'other issue'
going on that's central part of my work, they don't see it as important
to the discussions we're having about managed care and rationing and
distribution of funds" that are part of their work. When she's tried to
get them to "connect the dots between right-to-die initiatives and the
desire to contain costs, things often get a little bit tense."
Jones
says disability activists feel the loneliness every time they attend a
meeting and have to press for access. "It's the hypocrisy that really
gets me. They want to say they're 'inclusive,' but if they truly were
inclusive, they'd make sure their meeting was accessible. Why is it
that they always forget access? They say they don't really mean not to
include you, but the truth is they don't set up an environment that
makes it possible for us to participate. They don't really see us as
partners. "
"In the 1950s, blacks had their
churches. Women had each other as well," she continues. "But people
with disabilities are isolated. You are likely the only person in your
house, in your family, with a disability." In most families, even
today, there's an aura of shame about being disabled, she says; a
subtle or not-so-subtle message that "you have to pull yourself up by
your bootstraps, that you have to succeed by and large by yourself."
She compares this to the isolation and shame a gay or lesbian often
felt before the growth of the gay rights movement.
And,
she continues, even within families that are "pretty progressive
politically" and who would never see themselves as oppressive, there is
an expectation that the family member's disability should be minimized;
that the child should work to become "normal." In this way, even for
most families who have disabled members, disability issues are
downplayed as a broader political cause. She points out the almost
unquestioning acceptance in the progressive community for what's called
"eugenic abortion," the "I don't want a disabled child so I'll have an
abortion" approach to thinking about disability.
"Maybe
disability rights activists could do a 'better job' of making the case
for disability rights, but at some point I have to think it's incumbent
upon liberals to educate themselves," says Bérubé.
"I'm frankly surprised that more liberals don't
latch onto the idea of 'reasonable accommodation' as the standard for all
civil rights law," he continues. "Far from marginalizing the ADA as a
law pertaining only to 'special' populations who need 'special'
services, liberals could very well put the ADA front and center as the
very model for a new paradigm in thinking about civil rights and
citizenship."
Liberals should be offering
"compelling defenses and extensions of the ideal of reasonable
accommodation," he continues. "In the built environment, we need a new
generation of planners and architects familiar with universal design
and capable of explaining to nondisabled liberals how 'access' is truly
is a universal issue.
"And is there any better
place than the disability-rights platform from which to argue for the
absolute necessity of universal health care? Here, too, liberals should
be putting disability front and center."
"I hope
that eventually leftists will become aware of the exploitation"
involved in both assisted suicide and restrictive government programs
like nursing homes, says Amundson.
Writer Josie
Byzek, referring to Peter Singer's utilitarian philosophy which holds
that parents should have the right to end the lives of their disabled
newborn, adds, "True utilitarianism ought to result in real healthcare,
real civil rights, not some sort of glorified eugenics."
Disability rights issues could redefine the
women's movement, says feminist Ingrid
Tischer.
"The battles are huge. They include access to affordable healthcare,
long-term community-based care and living wages for the workers (a
largely female population) who provide personal assistance." And, she
adds, the women's movement's progress is doomed if it fails to include
women with disabilities." She wants" women who generally 'get it' to
get over their tizzy about what-if-it-happened-to-me. Start listening
to women and men with disabilities."
"Liberals
-- and progressives, as I'd describe myself," saysBérubé, "have lost so
much ground and so much public legitimacy over the past 30 years that
it's quite clear we need new ways of thinking about the public sector
and the common good. People need to begin to "read liberal theories of
social justice in terms of disability issues -- putting the
perspectives of people with disabilities front and center in a second
wave of civil rights activism."
"To really 'get'
disability politics means also to be a leftist," says Blaser, "to have
a radical belief in human equality globally, across gender, ethnicity,
sexuality -- and disability."
Posted Jan. 26, 2004.
Mary Johnson edits Ragged Edge.
Last updated:
Saturday, January 22, 2011
Copyright (c):
The Michael W. Connett Living
Trust/South Bank HIVe
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