The Left & Disability
— Barri Boone
I JOINED “THE crips” 13 years ago, upon being forced to quit work due to toxic exposure at my workplace. “The crips” are not a group you really fight to get into, but they can have excruciating initiation rites, worse than to get into “Skull and Bones.” And you don’t have to come from a rich family; in fact, membership almost always insures that you become poor, and very quickly!
If “Crips” used to trigger the image of a gang fighting the “Bloods” in Los Angeles, now there are other associations. People with disabilities have gone from “crippled” and “handicapped” to “challenged” to “PWDs” — and now, “crips.” (But don’t call anyone a crip, unless you are also a crip; it’s an in-group kind of thing, at least until THAT changes!)
What Is “Disability”?
I had been on the left for some 25 years before becoming a crip, and had to realize that I knew very little about the movement, even though my initiation took place in Berkeley, the home of crip-activism. I knew they despised Jerry Lewis and why, and I had noticed that there were more ramps on the streets, which were great when you were riding a bike or pushing a grocery cart.
I quickly began to realize that in some ways the crips were more invisible (a pun sometimes!) than any other minority that the left campaigned for around the planet. And I wondered why.
It’s complicated, but part of it has to do with our fear of death, and even worse, a fear of becoming disabled. In some ways, it was easier to demonstrate against mass murder in Chile or South Africa, than to support the man down the street trying to get on a bus that was not equipped with a wheelchair lift, or to assist the woman next to you at a meeting who was choking due to a lack of ventilation in the room.
Why is that? When will the crips’ demands become a full-fledged issue of the left? How have crips and the left intersected, and not?
It’s odd, but Bush’s attack on Social Security has linked the labor movement, seniors, and crips in a way that hasn’t happened yet, nationally! As always, one needs to review a little history first in order to get the full picture.
The disability experience in our society is one of oppression, but it needn’t be. We all have limitations, which are different at various points in our lives. Sometimes they are temporary, sometimes permanent.
Some of us have difficulties with math, some with memory, others with walking or dancing, seeing or breathing. Some of us are discriminated against by the rest of society, others not. It changes in various localities and historical periods.
Some of us are born with recognized disabilities. Many of these result from economic disparities, or from some problem in the non-sustainable organization of the earth. For some of us, our parents or caregivers lack proper nutrition, health care, working or living conditions.
Others become disabled due to a variety of mostly changeable conditions — war, other acts of violence like battery or drunk driving, drugs (both prescription and so-called “recreational”), neglect, lack of appropriate medical care, or hazards in the workplace or community. How folks are treated with their limitations depends often on the ideology of the society they live in, explicit or implicit.
In early agrarian societies PWDs were incorporated into the community based on work exchange. They might work at their own pace (as opposed to an arbitrary pace devised by management “time and motion studies”). Folks with physical or mental disabilities could contribute to their community in the arts, as storytellers, or by tending the fields or working in the kitchen. And they could eat with everyone else, and take their share of amenities.
As society developed into early capitalism, work was done for the profit of the few. Workers fueled the war machine whose goal was to kill pre-determined enemies. All roles changed, including that of the PWD.
Nietzsche wrote that “the sick person is a parasite of society.” PWDs were called “useless eaters” after World War I. “Crazy” relatives were locked up in attics, basements, and later mental hospitals that often paralleled prisons. People were valued only by their ability to work, to breed and to be warriors.
The present attitude toward PWDs has shocking similarities with the Nazi concepts that we hold in contempt. Various sectors in society determine the concept of “normal,” from schools, to church groups, social service agencies, corporations, the military, or even the Boy Scouts. Various political groups have differing ideas about who is worth health care costs and who is not.
The “Final Solution” began with the execution of “mental defectives.” When society didn’t protest, it escalated. While liberals campaign for physician assisted suicide, support services are still not adequate for individuals and families who choose to live, pushing some toward the least costly option.
In an unequal system, prioritizing whose life is more worthy while killing certain others quickly can be rationalized, as can killing others slowly with lack of support services. Increasing numbers live below the federal poverty line even in times of economic “boom.” Hundreds of thousands of children and adults have no health plan or ability to purchase medical care.
There is criminal neglect of health and safety provisions at work from the oil refineries, to office buildings, to farm fields. Home care workers and some hospital workers make the minimum wage, while those who do animal care make $4-5 more per hour!
Spraying of toxic chemicals is now used not only in wars against civilians, but by police against our own citizens who dare to dissent, or happen to live in an area where crops are protected from bugs at the expense of human health. Thousands of companies like PG&E still pollute their workers and communities, as portrayed in the movie “Erin Brockovich.”
Our government even turns its back on its own warriors, poisoned by Agent Orange in Vietnam and by vaccinations and chemicals in the Gulf Wars I and II.
Pitying the “Cripples”
In the 1950s Jerry Lewis started what PWD activists call his “pity program” to play on guilt to solicit donations for “crippled children.” Each disease group had to find its own source of income, and those diseases with more people, and more media attention were able to establish centers for care and research, such as for those with Cerebral Palsy, polio, cancer etc.
Of course these private “charity” methods of caring for people often leave a great gap for those with newly diagnosed diseases, such as AIDS and Multiple Chemical Sensitivities. Diseases that mainly affect those other than middle-to-upper class or white people — AIDS, Sickle Cell Anemia or pesticide poisoning of primarily Latino farmworkers — are mostly left to fend for themselves.
Until relatively recently there was difficulty funding breast cancer — and its link to environmental causes remains an underfunded semi-secret. Today, people with illness caused by toxins, smoke and pollution remain in a David-fighting-Goliath struggle, overwhelmed by the huge finances of corporations such as the cigarette or chemical industries, who spend their money only to absolve themselves from any liability from affected workers or communities.
The Independent Living Movement
The grandfather of the disabled movement is Ed Roberts. He had polio and had become paralyzed due to a serious fever, and was totally dependent on an iron lung. The doctors informed his mother, within his earshot, that it would be better for him to die than to live as a “vegetable.” Ed became resigned to that fate in his teens.
He was surrounded by nurses, who made every decision for him around the clock. One day the last nurse left, and he was forced to make his own decisions. He explains this turning point in his life:
“When they all finally left, that’s when I realized that I could have a life, despite what everyone was saying. I could make choices, and that is freedom.” (Described by Roberts’ personal attendant, Jon Oda, quoted in The Disability Rights Movement,” 37)
Another turning point for Roberts occurred when he first attempted to go out in public. He was able to get out of his iron lung for short periods, but the idea of going out into the world was the scary part. As he describes it:
“My brother lowered me out of the back of the station wagon, and it was like a tennis match—everyone turned to look at me. I looked at someone, right in the eyes, and they turned and looked away. That was when I realized that maybe it wasn’t my problem, maybe it was their problem.” (Ibid, 37-38)
I quote this at length because it marks a moment of reckoning that most disabled folks’ experience—deciding to LIVE with your limitations, and realizing that if others don’t accept you, that it’s THEIR problem, not you!
Roberts was able to forge these experiences into a fightback movement for several reasons. First, he was a middle class white male trying to enter the University of California at Berkeley; he was bright; and this was in 1962, the same semester James Meredith brought a lawsuit to enter the University of Mississippi.
The Free Speech Movement, People’s Park and Women’s Liberation all came on the scene shortly afterwards, and motivated other frustrated disabled people to organize for their own rights.
Not all civil rights activists saw the similarities in the struggle. Roberts reveals, “I remember meeting with Leonard Peltier before he was arrested. I met with Stokely Carmichael and others in the Black Power movement. When I told them that we were all fighting the same civil rights battle, they didn’t believe me; they didn’t understand our similarities. I did. Even now, many people don’t realize it.” (Ibid, 38-39)
The disability movement was able to find enough support to start the first Center for Independent Living (C.I.L.) in Berkeley in 1972, which eventually multiplied both nationally and internationally. Its purpose was to give a vision and resources to get PWDs out into the community and continue the fight for access into the workplace.
But the ILCs were still dependent on money from grants and fundraising with the rich. Some centers today still spend more time organizing dinners for the wealthy than servicing the needy!
The more militant and often confrontational crip movement that takes to the streets, employing tactics from sit-ins at Newt Gingrich’s office to crawling up the Capital steps in D.C., is ADAPT. This more “bottoms up” group began as the American Disabled for Accessible Public Transit and became the American Disabled for Attendant Programs Today.
ADAPT began in 1975 when ex-minister and founder Wade Blank liberated 18 severely disabled adults from a nursing home into apartments where they received support services they needed, and were then able to make decisions about their own lives. Thus the slogan, “Free our people!”
The nursing home industry makes $90 billion per year and has been compared to the prison industry, with the difference being that nursing home inmates are kept in place with pills not guns, and unlike prisoners are not eligible for parole. It’s a life sentence! ADAPT demands that 25% of federal nursing home dollars be redirected to a national attendant services program.
The U.S. Supreme Court Olmstead decision (1999) requires states to take measures to prevent the “unnecessary institutionalization” of PWDs and seniors. There are still struggles across the country to enforce this decision. In California, for example, there is no comprehensive plan yet.
Governor Schwarzenegger says he favors PWDs remaining in the community, BUT at the same time he proposes cuts to all resources that support that happening, like the In Home Support Services (IHSS) program, SSI/SSP, and regional care centers.
The Fight for ADA
The fight that federalized the legal rights of PWDs culminated in the passage of the Americans with Disabilities Act (ADA) in 1990. The “father of the ADA,” Justin Dart, a wealthy post-polio wheelchair user, began work on the issue in the early ‘80s. Some rights covered PWDs in the ‘64 Civil Rights Act, and architecture and transportation access were covered in the ‘77 Section 504, but even more was required to fully integrate PWDs into society.
The richest and most powerful lobbies opposed the ADA — including the National Federation of Independent Businesses, the U.S. Chamber of Commerce, New York Times, Wall Street Journal, Restaurant Association, and the entire public transportation industry.
The fight for the ADA was led by PWDs, their families and service providers, civil rights groups, some businesses. It was passed by both houses of Congress and signed by President G.H.W. Bush, who had three children with disabilities. It affected 1/6 of the population, which was 54 million in 2001.
One major improvement was that it increased employment of PWDs, both public and private, thereby reducing dependency on government entitlement programs, which was $200 billion in 1990.
Crips and the Labor Movement
The labor movement intersects with the disability movement on many of these issues, but also can be at odds with crips. For example, SEIU Local 250 in California organizes workers in both nursing homes and home care.
Last year SEIU 250 agreed to help the nursing home industry limit lawsuits that hinge on allegations of mistreatment of patients, when they are neglected, maimed, sexually abused or killed. In return, SEIU 250 would receive better access to nursing home workers who might be organized by and pay dues to the local.
Deborah Doctor, a lawyer with the disability legal group Protection and Advocacy, was quoted in the San Francisco Weekly, “I would say the [Local 250] SEIU’s alliance with the for-profit nursing home industry is unholy. They have no more right to negotiate away our rights than we would to negotiate away their collective bargaining rights.”
In other situations, such as in the fight against our Governor “Terminator’s” proposed cuts, the labor movement, led by the unions organizing home care workers (SEIU and UDW, United Domestic Workers) demonstrates, lobbies and agitates with the disabled movement. And SEIU has issued reports documenting instances when the nursing home chains’ greed for profits result in patients’ deaths, falls and medication errors.
As with other service industries such as education, when the needs of the students (patients) and the needs of the teachers (nurses) do not completely overlap, then care needs to be given to work out ways to enlarge the pie with genuine labor/community alliances, and not fall into struggles over dwindling pieces of the pie!
Now what would that larger pie look like to the disabled community? The health of each person could be supported by society from birth, through school, work, retirement and with dignity in death. Society could be run with the impact on the Seventh Generation in mind!
A Human Right!
To implement health care and life support services as a human right would require:
* Free universal, healing health care for all, not dependent on our ties to families or workplaces (Single Payer); public not privatized hospitals and clinics; retrain all health insurance employees for productive work; take the profit out of pain.
* Free medical rehabilitation, equipment, and medication (with emphasis on natural supplements rather than pharmaceuticals), alternative treatments such as acupuncture and chiropractic, medical marijuana.
* Relevant health information in schools and in the community on nutrition, sexuality, parenting, safety in sports, conflict resolution, anger management and stress relief.
* Full access for all disabilities in the workplace and the community. (Enforce and improve the “Americans with Disabilities Act” (ADA).
* Community care, with home care workers paid a living wage, and community-based assisted living arrangements to replace inhumane warehousing in nursing homes.
* A holistic plan for health research to be directed by committees including PWDs, focusing on prevention, treatment, and support.
* All service programs to be based on human needs, designed with the input of those who need them.
* Jobs designed with health concerns considered, with emphasis on ergonomic safety, proper ventilation, flexible schedules and with access to child care and exercise programs.
* Government funded health and safety programs in the workplace, designed and monitored by unions or independent workers’ organizations.
* Hospice care, quality pain relief, support and dignity in dying.
“Crips” is like the “n-word,” “queers” and “chicks” — words that one decade finds in the non-PC dictionary, and another finds them out — it’s OK to use them as long as you are also in the described minority. Crips are raising the issues discussed here and similar ones. We need the support of the rest of the movement, from those of you who are “temporarily able-bodied!”
For further information:
Beyond Ramps. Disability at the End of the Social Contract, by Marta Russell, Common Courage Press, 1998.
The Disability Rights Movement. From Charity to Confrontation, by Frieda Zames and Doris Zames Fleischer, Temple University Press, 2001.
The New Disability History. American Perspectives, essays edited by Paul K. Longmore and Lauri Umansky, New York University Press, 2001.
Staring Back. The Disability Experience from the Inside Out, a compilation of nonfiction, poetry and drama edited by Kenny Fries, A Plume Book, 1997.
Bone Truth, by Anne Finger, Coffee House Press (Minneapolis), 1994. A novel about a woman with disability, with parents who were in the Communist Party during the McCarthy era when she was growing up, and who is dealing with the meaning of life — literally, as she makes the difficult decision about whether to carry through her pregnancy.
A disability caucus exists in the Green Party and can be reached at http://groups.yahoo.com/group/disabledgreens/
ATC 115, March-April 2005