Is there anything more central to our existence than hope? And when it is denied, is there anything more disheartening? There is a poignant moment in Ralph Ellison’s novel Invisible Man when the nameless black narrator realizes he is bereft of hope: I am invisible, understand, simply because people refuse to see me. Ellison’s 1952 literary opus symbolically represented two centuries of denied socio-economic standing for the entire African-American community. Legal recognition following the Civil War was not enough. Ninety years later, after civiland not so civildisobedience, the Fourteenth Amendment’s equal protection clause finally provided the catalyst for the U.S. Supreme Court to find segregation’s separate but equal anything but equal or moral.
For America’s disabled people, 1990 marked a time of hope as a marginalized minority in the legal reckoning known as the Americans With Disabilities Act. With the passage of the A.D.A. and the events leading up to it, the public again was made aware of words like discrimination and segregation. In mounds of testimony heaped on congressional hearings and a designated task force, Congress was buried in proof of massive discrimination and segregation in all aspects of life and the most extreme isolation, unemployment, poverty, psychological abuse and physical deprivation experienced by any segment of our society. But, it was not just the publicized treatment of institutionalized clients left lying half-naked and unattended in their own urine and feces on cold floors that prompted an outcry and Congressional hearings. It was the physical obstaclescurbs, stairs and lack of appropriately designated parkingthat alienated people with mobility problems from participating in America’s mainstream. It was also those who were demoted or fired from their jobs after becoming disabled and the many who were denied decent housing, a dignified living, full citizenship and social standing. As with other minorities, for every disabled individual there is a story of discrimination and segregation to be told. The worse the disability, the more dispiriting the account.
Thanks to the A.D.A., the logistical part of integrationwidening doors and installating rampshas allowed an ostracized population to be seen and heard. Nevertheless, in today’s presumably tolerant and politically correct society, attitudes and perceptionsconscious or notremain intransigent and entrenched toward persons with disabilities.
Ten years after the passage of the A.D.A., a recent Harris survey revealed that only three out of ten disabled persons are employed full or part time: a 71 percent unemployment rate. Narrowing the numbers further are those with severe disabilities who are not likely to work at all. Discounting the strides made in public access, the greatest economic boom of recorded history has had no beneficial effect on America’s disabled citizens. In some states the number of employed disabled persons has actually decreased. In Michigan the employment of disabled persons has fallen from 7.5 percent in 1990-91 to 5.7 percent in 1998-99; in Nebraska from 4.3 percent in 1990 to 3.2 percent as of March, 2000; and in Iowa from 5.8 percent in 1992 to 4.5 percent in 1998. Worse, 51 percent of disabled adults live in households with an income of $15,000 or less. Of the 13.2 million severely disabled, less than half are covered by private insurance; close to 2.3 million have no coverage. Those who can least afford health insurance are the ones most saddled with medical debtnot to mention that they are the ones who bear the brunt of the ever-increasing cost of prescription medications and assistive devices. For most, physical or mental therapy is considered a frill. Prospects for employment are further dampened by the level of educational attainment. Of the 12.0 million adults between the ages of 25 and 64 who have a severe disability, almost half have not finished high school.
While the numbers indicate gross negligence, the greater hurdle is a culture of hidden but governing characteristics that celebrate strength and independence. Traits that have contributed to a policy of exclusion date back to Dorothea Dix’s work with incarcerated disabled people in the mid-19th century and to the eugenics movement and the forced institutionalization of millions and sterilization of tens of thousands during the first half of the 20th century.
The disabled are dependent. They cannot compete. Portraying them as maladjusted individuals, conservative religious traditions have equated disability with sin and seen a squalid economic fate as a sign of God’s disfavor. The film industry has cast them as hunchbacks and evil villains. But it’s a kinder, gentler, subtler discrimination these days. The various audio-visual media continue to present a skewed version of the disabled that runs counter to the truth: from the person who is to be pitied to the supercrip meant to inspire. It is never the individual, but the disability that is used to elicit sympathy or serve as a yardstick for measuring personal achievement. This emphasis on the maudlin has been at the expense of social enlightenment. Whether it is the embarrassed mom who admonishes Junior for staring at the person with a hesitant gait or spastic speech, to the ready counsel of some family, friends or foesthere’s always someone worse off or there’s something wrong with everyonenebulous impressions that the disabled are faced with serious problems with which they cannot cope are backed by generalized statements that fail to recognize the existing discrimination.
But the issue is not just a culture that glorifies tales of the rugged individualist and worships unfettered self-interest or fears what it cannot control. It also has to do with a culture that lacks self-examination; its inability to acknowledge its own weakness and interdependence; a culture that frets over such superficial matters as labelsdisabled, challenged or handicappedbut does not examine its moorings on the disability question. What is the desire to consume and dangle possessions as trophies or the need to build a missile defense but a witness to our weakness and insecurity? We are all dependent. We are all weak. We have all experienced pain and anguish. It is the mere degree and form of suffering and when it occurs that distinguishes us. We all know different levels of exclusion. Despite its socioeconomic expediency for the few, social Darwinism and Hobbesian thinking have no relevance in a world where we possess the means to provide for all. But without the willingness to communicate and understandto assume and keep a distanceit is easier to feel pity or treat disabled persons as invisible than it is to wonder about their strength to endure or their independence of thought as a result of exclusion.
Most disabled people reach a point where they do not mind being different. There is a liberating honesty to living in full view. Denial, guilt or the culture’s mixed messages and the disabled person’s attempt to determine his or her place in it, are no longer as inhibiting as stairs are to a wheelchair. They realize that acceptance of a disability is never complete, nor is frustration overwhelming. Most disabled people have gone through the stages of grief described by Elisabeth Kubler-Rossdenial, anger, depression, bargaining and acceptanceto reach a peace that would be instructive, an acceptance of self and others that is worth imitation. There is no need to adopt a posture or swagger, or to fret about another person’s gain. Weakness becomes strength; dependence a virtue.
As with Ralph Ellison’s protagonist, W. E. B. Du Bois understood the invisibility that stemmed from his ethnicity. He wrote: Between me and the other world there is ever an unasked question; unasked by some through feelings of delicacy; by others through the difficulty of rightly framing it. All nevertheless, flutter round it.... How does it feel to be a problem?
The disabled recall to us our deepest fears. They are daily reminders of our inability to control pain and suffering. They remind us of our mortality. We can flee as far into ourselves as we please, but the person we pass who is blind, deaf, stooped over, in a wheelchair, muttering or swinging fists at phantoms is a reflection of you and me. We are wasting our indifference, pity or contempt on a problem that could visit us at any second. How could we ever conclude that the disabled are the problem?