A Report from the Frontlines of the HIV/AIDS Epidemic

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.

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.

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.

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 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.

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.

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.

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.

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, 18^th Floor
New York, NY 10004
(212) 549-2627

[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.