Ron Berger —

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I am a sociologist by training and have been thinking about and studying disability as a social phenomenon, not just as an individual experience, for many years. In the tradition of C. Wright Mills, who famously coined the term “sociological imagination,” I have sought to illuminate the ways in which personal troubles are related to public issues. In this article, I highlight four agendas that delineate some key sociological dimensions of disability and their implications for public policy in the United States. Adapting a framework developed by political scientist Dana Lee Baker, these dimensions may be characterized as the agendas of civil rights, care, cure, and celebration.

Civil Rights

The social movement for disability rights is an international phenomenon, but the movements in the United States and Great Britain are the most notable for initiating this trend for change. In the United States this movement emerged in the context of other “oppositional movements” of the 1960s, such as the civil rights movement for black Americans, the women’s movement, and the gay and lesbian movement, which advocated on behalf of previously underrepresented political constituencies.

Unlike other movements of this era, the disability rights movement does not have a widely known figure with name recognition such as a Martin Luther King, Jr., Rosa Parks, Betty Friedan, or Gloria Steinem. But Ed Roberts is arguably someone deserving of such recognition. Roberts, who was severely disabled from polio—he was a quadriplegic who had minimal use of his hands—had gained admission to the University of California, Berkeley (UCB) in 1962, the same year that James Meredith became the first black American to attend the University of Mississippi. As a youth, Roberts had to fight to receive his high school diploma because he could not complete his driver’s education and physical education requirements. Then, the California Department of Rehabilitation (CDR) refused to financially support his college education, as it did for other, less disabled students, because his CDR counselor thought it would be a waste of taxpayer money since it was “infeasible” he could ever work.

Roberts took his case to the media, eventually forcing the CDR to relent, and his success ushered in opportunities for other students with disabilities at UCB. Influenced by the political radicalism of the day, Roberts and his cohort of activists lobbied and waged sit-ins for accessibility reforms both on campus and in the larger Berkeley community. They questioned the conventional definition of “independence,” which defined it in terms of the tasks a disabled person could perform without assistance. Known as the independent living movement, activists wanted to define independent living in terms of the quality of life that people with disabilities could achieve with or without assistance. They argued that people with disabilities did not simply need custodial care but wanted to be fully integrated members of their communities. They also aimed to reverse the power relationship between themselves and the medical, educational, and social service professionals whose services they required. People with disabilities no longer wanted to be treated as clients who were told by professionals what to do. Instead, they wanted to be treated as self-advocates and consumers of services who could decide what was best for themselves.

As such, the social model of disability emerged in the United States. First articulated by disability activists in Great Britain, the social model posits that it is not an individual’s impairment but the socially imposed barriers—the inaccessible buildings, the limited modes of transportation and communication, the prejudicial attitudes—that construct disability as a subordinate social status and devalued life experience.

Proponents of the social model viewed the elimination of such barriers as a matter of legally-protected civil rights, and Baker notes that this is a vision of both negative and positive rights. Negative rights entail the right to be protected from harm by others’ actions, in this case, prejudice and institutional discrimination that denies people with disabilities valued resources. Positive rights entail the right to have these resources provided, such as accommodations that allow people with disabilities to participate fully in society.

The next chapter in the disability rights movement involved a landmark piece of federal legislation, the Rehabilitation Act of 1973, which included provisions that mandated “reasonable accommodations” in public education and employment, required public institutions to initiate architectural accessibility reforms, and forbade any public institution that received federal funding to discriminate against anyone solely on the basis of his or her disability.

As is the case with most legislation, especially federal legislation, the devil is in the details, and conflict between federal authorities and disability activists emerged over the provision of funding and policies such as “separate but equal” schools for students with disabilities. During the administrations of presidents Gerald Ford and Jimmy Carter, officials in the Department of Health, Education, and Welfare tried to stall the development and implementation of enforcement provisions, and activists began organizing demonstrations around the country.

Until this time, the disability rights movement had been local and disparate, but it now became a national and cross-disability movement of diverse groups working together for change. It was this movement that later culminated in the passage of the Americans with Disabilities Act (ADA) of 1990, which further expanded the rights of disabled people in both the public and private sectors. Although the implementation of the ADA, like previous legislation, has been marked by controversy over funding and implementation, it constitutes the seminal point in the legal rights and expansion of opportunities for people with disabilities in the United States.

Care

The care agenda of the disability movement entails two components, which Baker describes as maintenance and rehabilitation or treatment. In general, the care agenda places greater emphasis than does the social model on the limitations of physical, sensory, and cognitive impairments that are not reducible to societal prejudice or discrimination.

Most of the maintenance care for people with disabilities relies on the voluntary labor of family members. In the past, children with significant disabilities were typically institutionalized, but nowadays parents are expected (and want) to take care of them at home; and families are in desperate need of resources and support. At the same time, many children are put up for adoption; about 12 percent of all adopted children ages five to fifteen have a least one identifiable disability, and this number rises to 20 percent for children with Down syndrome. Additionally, with the onset of disability that sometimes accompanies aging, the elderly are a constituency that is in need of homecare services that might allow them to avoid ending their lives in a nursing home. To this I would add that professional caregivers are among the lowest wage earners in the workforce, which indicates the value (or lack thereof) we place on their contributions to society.

Beginning in the 1960s, public exposés of the deplorable conditions in institutions that warehoused people with mental illness and intellectual disabilities (what was formerly called mental retardation) led to a movement of “deinstitutionalization,” a policy of moving people from institutional confinement to the community. But adequate provision of community services became (and remains) a problem. Overall, people with intellectual disabilities have fared better than those with mental illness, with the latter group lacking proper psychiatric care and suffering from homelessness. All too often the criminal justice system is used to control this population.

Like everyone else in society, people with disabilities need healthcare, and while most are generally healthy, their healthcare needs are often greater than those of the nondisabled population. For one, people with disabilities require access to specialists who are familiar with the particulars of their impairments and the medical treatments that are available to improve their functioning, if they so desire. People with physical impairments may also experience secondary health effects, including insufficient weight control and earlier onset of chronic health conditions such as coronary heart disease and adult diabetes due to a lack of aerobic exercise, arthritis and osteoporosis due to poor orthopedic and muscular health, and renal disease due to a neurogenic bladder; and people with mental illness may require ongoing medications. People with disabilities may also need access to assistive service animals (primarily dogs) as well as technological devices such as wheelchairs (manual and electric), orthotics and prosthetics, synthesized speech devices, vans with lifts, and hand-operated vehicle controls.

In the United States, where millions of people remain uninsured or underinsured, coverage for this range of healthcare needs is problematic. While people with disabilities may be covered through Medicaid (for the poor) or Medicare (for the elderly), their ability to maintain eligibility for these government programs forces them to limit their income through paid employment. Moreover, insurance coverage may not be available for ongoing physical therapy, continued access to specialists, or purchase of the best available assistive technology products.

For those suffering with serious chronic illnesses and other conditions, the care agenda also has the potential to clash with the right-to-die movement. Paul Longmore, among others, notes that laws that allow people the choice to end their own lives often co-exist with policies that curtail healthcare and homecare services for people who might choose to live if given better opportunities for care.

To illustrate his point, Longmore cites two 1989 cases, one involving David Rivlin of Michigan and the other Larry McAfee of Georgia, both of whom were spinal-cord injured quadriplegics who relied on a ventilator to breath. In Rivlin’s case, he found the cost of paying for the assistance he needed for independent living prohibitive. Even though it would have cost the state of Michigan less money to leave Rivlin in his own apartment than it cost to put him in a nursing home, he was forced into an institutionalized existence. Rivlin came to the conclusion that he would rather die, and he obtained “a court order authorizing a doctor to sedate him and disconnect his ventilator” to end his life.

In McAfee’s case, the state of Georgia offered him no financial support for independent living and no “nursing home would admit a ventilator user because the state paid so little.” He was eventually placed in an intensive-care hospital unit, even though he did not need such care. McAfee found this environment impossible to live in. Longmore describes the circumstances of the unit: “The lights are always turned on. Medical personnel ceaselessly move about. Patients are assaulted by the constant noise of medical machines. Noise levels from the equipment and the conversation of staff continue day and night….Patients are caught in the disorienting atmosphere of…emotional stress…[and] sensory overload.”

After eight months of living under these conditions, McAfee asked for “court authorization to have a doctor help him die.” At the hearing, a professor of rehabilitative medicine and medical ethics at Emory University told the court, “We acknowledge an individual’s right to autonomy, self-determination and liberty as part of our ethical vision in this country.” The judge proceeded to grant McAfee’s request and expressed admiration for his courage.

Disability advocates in Georgia spoke out against everyone involved in the case, including the media, for asking the wrong questions. In a joint press release from four disability rights organizations, they expressed outrage that the state of Georgia had “for years left Larry McAfee without enough support for independent living and now steps in willingly to help with his suicide….The state creates an unbearable quality of life and then…says disabled people should be assisted to die because their quality of life is so poor.”

The McAfee case caught the attention of Dr. Russ Fine, director of the Injury Prevention Center at the University of Alabama at Birmingham. He introduced McAfee to representatives from the United Cerebral Palsy of Greater Birmingham, who helped him find work as a computer engineer and regain control of his life. Later he would say that if more funding for independent living had been available, he would never have despaired to the point of seeking suicide. McAfee lived an independent life until he died of a stroke in 1995.

Longmore notes that in states that provide more support for independent living, people like Rivlin and McAfee can “live in their own homes, raise families, go to school, and hold jobs.” In neither of these cases were the desperate men even given psychological evaluation or counseling. The nondisabled people around them assumed that when a person with a severe disability says that he or she wants to die, they must be acting rationally. But Longmore thinks the public fails to acknowledge the untenable situation such individuals are put in, as if the impairment itself is the sole reason they seek relief through death.

Longmore also explains why disability advocates are distrustful of the judiciary. While many U.S. courts have found a “liberty interest” in upholding a person’s right to terminate treatment and even receive physician-assisted suicide, no court has ever found that “an American citizen has a general right to health care.” In a 1996 right-to-die case, for example, the U.S. Ninth Circuit Court of Appeals declared that “in a society in which the costs of protracted healthcare can be so exorbitant, we are reluctant to say that it is improper for competent, terminally ill adults to take the economic welfare of their families and loved ones into account.” Yet the very same court went on to say that it did not have the authority to address the problem of access to healthcare; that, it said, was up to the legislature.

Cure

The cure agenda for disability focuses on the prevention or elimination of physical, sensory, and cognitive impairments. As such, the cure agenda typically equates disability with illness or disease, but this is a conflation disability advocates are reluctant to make, in part because they want people to know that people with disabilities are often perfectly healthy, or at least could be if they received adequate treatment. This reluctance may also stem from the desire to avoid the added stigma that is associated with illnesses such as HIV/AIDS and cancer.

Moreover, concerns about the cure agenda raise the specter of eugenics, a philosophy and public policy of the past that advocated for public intervention to regulate the genetic composition of the population by encouraging the breeding of parents thought to possess “good genes” and by discouraging the breeding of parents thought to possess “bad genes.” Involuntary sterilization of people with cognitive disabilities was at one time practiced in the United States; and in Nazi Germany the killing of people with disabilities took place. More contemporary eugenicists often couch their arguments in terms of utilitarian philosophy. Peter Singer, for example, who holds professorships at Yale University and the University of Melbourne, has gone so far as to advocate infanticide of babies with disabilities, thinking that it would reduce suffering and promote the greatest good for the greatest number of people.

Contemporary feminists have also been wrestling with the dilemma of genetic testing and selective abortion, and the potential clash between the reproductive rights movement and the disability rights movement. Whereas feminists want to preserve women’s right to choose, some are uncomfortable with the choice to abort an otherwise wanted fetus because of a genetic disability. They worry that the expanded use of genetic screening to identify potential disabilities will put pressure on parents to abort; and that parents who do not will be blamed for imposing a burden on society. Currently, for instance, about 90 percent of pregnant women who learn they are carrying a child with Down syndrome choose abortion. But Susan Wendell thinks that if potential parents were more enlightened about disability issues, and could expect a greater degree of social support for raising a disabled child than is often available, more would not choose abortion.

Another area of contention raised by the cure agenda has involved Jerry Lewis’s well-known muscular dystrophy telethon, which features pitiable “poster children” who help raise money for a preventative cure, but does little to improve the lives of those who are already disabled.

Lewis’s association with the Muscular Dystrophy Association (MDA) and its annual fundraising telethon spans more than five decades, from the 1960s through the 2000s. Under his tutelage, the MDA even positioned itself as having a philosophy that was in opposition to the ADA. While dedicating himself to the agenda of preventing muscular dystrophy, Lewis became known for his disparaging comments about people with disabilities. During the 1973 telethon, for example, Lewis said, “God goofed, and it’s up to us to correct His mistakes.”

The protests against Lewis galvanized in the early 1990s after he called people with disabilities “half persons” in a Parade magazine article. In the early 2000s, when Lewis was asked about the protests during a “CBS Sunday Morning” broadcast, he said, “Pity? You don’t want to be pitied for being a cripple in a wheelchair? Stay in your house.”

Celebration

The celebration agenda for disability is modeled after the “pride” movements advanced by racial and ethnic minorities and lesbian/gay/bisexual/transgender people, which entails people with disabilities coming together to assert an affirmative identity and community of like-minded people. Proponents of this agenda view disability as a matter of social diversity or difference, part of the natural variation that occurs among human beings, and even an important source of societal innovation. Evidence from biographical accounts, for example, suggests that some notable figures in human history—innovators in their respective fields such as Charles Darwin, Albert Einstein, Thomas Jefferson, Wolfgang Amadeus Mozart, Vincent van Gogh, Ludwig Wittgenstein, and Alan Turing—may have been people on the high-functioning end of what is now known as the autism spectrum.

Proponents of the celebration agenda also want nondisabled people to know that while disability may not be wished for and may be a source of suffering (for physical and social reasons), it is not typically a condition as disastrous as they might imagine. People with disabilities do not want to be pitied, but rather, as Tobin Siebers observes, they  “want to be able to…live with their disability, to come to know their body, to accept what it can do, and to keep doing it for as long as they can. They do not want to feel dominated by the people on whom they depend for help, and they want to be able to imagine themselves in a world without feeling ashamed.”

One of the clearest examples of the celebration agenda involves Deaf culture—the capitalization of Deaf being a symbolic representation that highlights Deaf people as constituting a linguistic minority who use sign language to communicate with one another. Just as other ethnic groups desire to preserve their linguistic and cultural heritages, Deaf people want to do so too.

One point of controversy regarding Deaf culture, which is also apparent with other disability communities, is the question of integration versus separation vis-à-vis the dominant culture. In a society where most nondisabled people do not use sign language, the desire to propagate and maintain Deaf culture necessitates separate institutions (schools, social clubs, athletic associations, places of worship, and so forth), as well as resistance to technological aids such as cochlear implants that would help deaf people hear and have a better chance of developing verbal speech. Not all deaf people favor this separatist approach; nor do hearing parents typically favor abandoning strategies for integrating their hearing-impaired children into mainstream society. Moreover, people with hearing impairments differ considerably in the degree of their impairment and in the amenability of their condition to hearing enhancement through technological aids, as well as in stage of the life course in which they may become deaf, hence mitigating their feelings of alliance with Deaf culture.

More generally, the phenomenon of disability culture confronts the tenuous potential for solidarity among people with disabilities. Research finds, for instance, that people who acquire their disability later in life are less likely than those who are born with or acquire their disability earlier in life to self-identify as a disabled person or think about their circumstances in terms of the social model or disability pride. Moreover, many do not think of their disability as a central part of their identity but only as an objective feature of their life that has its place among multiple elements.

Sources

Dana Lee Baker. 2011. The Politics of Neurodiversity: Why Public Policy Matters. Lynne Rienner.

Ronald J. Berger. 2013. Introducing Disability Studies. Lynne Rienner.

Paul Longmore. 2003. Why I Burned My Books and Other Essays on Disability. Temple University Press.

Tobin Siebers. 2008. Disability Theory. University of Michigan Press.

Susan Wendell. 1996. The Rejected Body: Feminist Philosophical Reflections on Disability. Routledge.