8-30-05, 2:45 pm
Last June, a group of disabled civil rights activists took over the office of Tennessee Governor Phil Bredesen following his announcement that approximately 100 individuals with disabilities who are dependent on ventilators but otherwise live independently would have their benefits continued under the state medical benefits program, known as TennCare, only if they received treatment in a nursing home.
The events in Nashville are but the latest manifestation of an ongoing militancy in the civil rights movement for persons with disabilities. While a militant current has always been present in the movement, epitomized by organizations like American Disabled for Attendant Programs Today (ADAPT) and local groups like Boston’s Disabled People’s Liberation Front (DPLF), it has been only in the last decade or so that such elements have received a broader acceptance among individuals with disabilities and community activists.
One of the unique features of the current civil rights movement for persons with disabilities is that it has thus far failed to capture the nation’s attention or imagination in the same manner as the civil rights movement which defeated Jim Crow in the south and served as the motivating force behind the historic Civil Rights Act of 1964.
An overview history
Inspired by the victories of the broader civil rights movement of the 1950s and 1960s, the civil rights movement for persons with disabilities began to quietly organize during the 1960s. It was a formidable task.
The nascent movement shared some commonalities with the broader civil rights movement, but also some important differences. The struggle against segregation was a common feature, for instance. But in the case of individuals with disabilities, the segregation took the form of institutionalization. Unlike the broader movement for civil rights, the segregation was not enforced by aggression and racist law, but by a mixture of pity or indifference. The broader civil rights movement fought for the right to sit anywhere on the bus, drink from any fountain, vote in elections and other efforts to show that a person’s race had no impact on their ability to do anything and everything any other person could do. For persons with disabilities, it was often impossible to get on the bus in the first place, to find a place to be served in a restaurant, to operate a water fountain, or to physically get to the polling place to cast a ballot.
Given this situation, it is only natural that the early efforts of the civil rights movement for persons with disabilities were oriented toward improvements in physical accessibility. The Architectural Barriers Act of 1968 was enacted in one of the last gasps of President Lyndon Johnson’s “Great Society,” a series of progressive steps which were somewhat eclipsed by the escalation of US involvement in Vietnam.
The Architectural Barriers Act was one of the important pieces of civil rights legislation to be adopted in 1968; the Fair Housing Act (an amendment to the Civil Rights Act of 1964) was the other. The Architectural Barriers Act provided that federal or state government buildings would be accessible to persons with disabilities, and it established accessibility standards as well as Architectural Accessibility Boards in all states. Despite its good intentions, however, enforcement of the Architectural Barriers Act proved difficult and uneven, due in no small measure to inconsistency in both training and funding.
The recognition of this reality led to the adoption of Section 504 of the Rehabilitation Act of 1973. The late Senator Hubert H. Humphrey, a Minnesota Democrat, successfully incorporated Section 504 into an appropriations package, and its presence was instantly noted by the small, but growing, civil rights movement for persons with disabilities. Section 504 required all executive agencies to adopt rules for use within programs for which they had jurisdiction. The regulation made it illegal to discriminate against persons with disabilities in federally funded programs and activities, and covered both physical accessibility issues as well as matters of employment.
Section 504 was a major advance in several areas and a significant disappointment on one level. In terms of advancement, the regulation contained a federal level definition for who was considered to be an individual with a disability for the purposes of civil rights protection. The second major advance was the introduction of the concept of reasonable accommodation for employees with disabilities. This concept provides that “otherwise qualified individuals with disabilities” may need certain considerations to enable them to perform “the essential functions of the job.” This could mean, for example, that an employee with a disability might need a greater maneuvering radius around their work station, an individual to read documents if they were visually impaired, greater amplification on their telephone or a Telephone Device for the Deaf if they were hearing impaired, a re-structured work schedule in order for them to keep medical or therapy appointments, and so forth. Section 504 also made it illegal to ask an applicant for employment whether they had a physical or emotional disability, had ever applied for or received Workers’ Compensation or any other kind of related inquiry. The intent of the regulation was that employers needed to consider the potential employees’ qualifications, not their disability.
Two disappointing elements of Section 504 were that it didn’t establish an affirmative action requirement that might have further encouraged employers to hire qualified persons with disabilities. The requirement for employers to make reasonable accommodations was also substantially limited, insofar as employers didn’t have to make any reasonable accommodations that might affect the profits of the business. Further, from a legal perspective, Section 504 didn’t offer a private right of legal action. As a practical matter, this meant that individuals with disabilities whose rights were alleged to be violated had virtually no right to litigate, and when they did they had to show that the alleged discrimination was intentional.
Still, Section 504 had a tremendous potential to make a difference in the lives of persons with disabilities. The US Department of Health, Education and Welfare, the Justice Department and other cabinet level agencies soon followed suit. One of the greatest, wasted potentials was through the federal Office of Revenue Sharing. The Office of Revenue Sharing was charged with disbursing federal monies to cities and towns and had gone as far as issuing its own Section 504 rules. The impact of this would have compelled cities and towns receiving these funds to make much-needed changes that would have afforded greater accessibility for persons with disabilities in municipal facilities. By 1985, however, President Ronald Reagan had abolished the Office of Revenue Sharing, resulting in a halt to these changes in many locations.
The Americans with Disabilities Act of 1990 built on the ground Section 504 had established. While Section 504 was specifically tied to federally-funded programs, the ADA expanded its coverage to all but the smallest private employers, covered state and municipal government buildings and facilities and established a new category the law called “Public Accommodations,” which covered most commercial businesses as well as hotels and motels.
While the ADA corrected some of the deficiencies in Section 504 (it was not limited to federally funded entities, permitted private lawsuits with awards that covered reasonable legal fees in order to encourage attorneys to take on the cases and gave enforcement authority to two government agencies), there were also some unfortunate repetitions of Section 504’s defects. The ADA failed to establish any affirmative action requirement for hiring persons with disabilities and gave substantial weight to businesses making accessibility changes and reasonable accommodations that were affordable, with the regulations using the vague term “maximum extent feasible” in several places.
One year after the passage of the ADA, the Government Accounting Office issued a report noting that compliance with the new law and, indeed, an understanding of its requirements, was sporadic. The GAO investigators reported that barriers were being removed which were not, in fact, barriers to accessibility in the first place.
The struggle against non-physical barriers
It is important to note that all of these regulatory victories did not come from any altruism or largesse on the part of the US government or major corporations. These victories came after decades of educational and organizing activities by individuals and organizations focused on civil rights for persons with disabilities.
The movement was neither much publicized nor touted, and there was no primary leader of the movement. The organizational form of the movement was largely local in nature, loosely structured. With the exception of some civil disobedience and direct action, such as the efforts of ADAPT around the struggle for accessible public transportation in Denver and similar efforts elsewhere by ad-hoc groups, the media barely seemed to notice.
During much of the 1980s, the civil rights movement for persons with disabilities, anchored by locally-based Centers for Independent Living, was focused primarily on efforts to maintain the fruits of its victories in the face of the pro-corporate, anti-people policies of the Reagan administration. They faced serious internal and external obstacles.
One of the foremost obstacles found both within and without the movement is observed by noting that a person with disabilities is an identification that includes not only those with physical disabilities but also those whose disabilities are emotional. While advances in addressing accessibility issues are beyond doubt, persons whose disabilities are emotional or not physically apparent often have greater struggles. There is a much higher degree of acceptance for a person with a physical disability, particularly if their disability was caused by an accident or trauma, than there is for a person who is dealing with depression, obsessive-compulsive disorder, schizophrenia, post-partum depression, etc. There is often a fear, inadequate understanding of these disabilities, or a denial that these are real issues as well represented by recent comments made by actor Tom Cruise.
This is not to suggest that persons with physical disabilities have crossed some Rubicon and have won every struggle. There is still an ongoing struggle against a cultural element that suggests persons with disabilities are to be pitied. This culture has been promoted by well-meaning organizations whose fundraising strategies have hinged on presenting persons with disabilities, particularly children, as pity objects for the purpose of encouraging the average person to part with their money. And, it must be admitted, they have been hugely successful along these lines. One of the by-products, however, is that successful fundraising strategies of this type have not kept pace with the new realities in which persons with disabilities are seeking in ever greater numbers to enter the workforce. What they find is that while some employers are wary of the cost associated with potential reasonable accommodations requests, a second barrier is created by pity. “Who wants to hire a pity object,” says one activist.
With unemployment rates for persons with disabilities anywhere between 70 and 90 percent, too many people with disabilities find themselves dependent on Supplemental Security Income (SSI) program, a program for persons with disabilities which, under current rules, limits the amount of income an individual can earn and requires repayment of monies if the income threshold is crossed. While SSI is a valuable assistance program, it relies on the belief that people with disabilities can’t and shouldn’t hold jobs.
Challenges to an effective movement
The civil rights movement for persons with disabilities also faces challenges from within its own house. There is a wide variance of opinion in the movement. There are those who advocate a gradual approach to issues, and those who adopt a more militant posture. Some want to protect existing gains, while others want to build on them or pressure authorities for greater, more consistent enforcement.
These differences are to be expected in virtually every movement, but in a movement such as the civil rights movement for persons with disabilities, it would be surprising if these inner struggles didn’t occur. There are many reasons for this, but a few deserve prominent mention. First, the civil rights movement for persons with disabilities is not homogeneous. It is made up of persons with physical disabilities, persons with emotional disabilities, parents, friends and service providers. For some, the movement is at the core of their identity as individuals, while for others there are different, but no less personal, motivations.
Second, the movement is cross-class in composition. Many are unemployed, but an increasing number are working in a variety of jobs. Thankfully, the number of persons forced to do piecework in so-called “sheltered workshops” is declining. But there are also individuals who, for whatever reason, have sufficient financial resources as to not have to worry about their future well-being. The cross-class nature of the movement is such that it is arguable whether the lessons learned from the history of organized and unorganized labor, such as the strength of unity, have been internalized to any significant degree.
The weaknesses in the movement were exemplified in the recent events around Terri Schiavo in Florida. The most militant sections of the movement, and much (though not all) of the movement generally, found itself in agreement with the most conservative Republicans, including the president’s brother, Governor Jeb Bush, that Schiavo’s life should be artificially prolonged. To the majority of the civil rights movement for persons with disabilities, the Schiavo case was a battle against forced euthanasia and the concept that having a severe disability was something many people would rather end their lives over than live with, a message conveyed by the Academy Award winning film, Million Dollar Baby.
On the basis of these precepts, the movement’s position on the Schiavo case was consistent and logical. Clearly, the political forces that took unusual legislative means to prolong Schiavo’s life were motivated by the most cynical political motives of promoting an ultra-right agenda. This right-wing cynicism was considered less important to many movement activists than what they saw as the larger issue: having a long-term disability need not mean the end of a useful life.
One of the facts that bodes well for the growth and political evolution of the civil rights movement for persons with disabilities is that it is an inclusive class of persons. As people live longer, the more likely individuals are to have some form of disability at some point in their lives, and an accompanying need to avail themselves of civil rights protection in employment, housing, services and/or accessibility.
The takeover of the Tennessee Governor’s office by persons with disabilities and civil rights activists should be seen as both a continuation of a lengthy struggle and as potentially bringing the movement into the next stage: The all out struggle against the ultra right. And ultimately, the realization that full rights for persons with disabilities, including the right to employment, accessible and affordable housing and full accessibility to theatres, hotels, places of worship, vacation spots, will be fully secure only with a qualitative and quantitative change called Bill of Rights socialism.
--Write to Lawrence Albright at pa-letters@politicalaffairs.net.
