The Second Phase: From Disability Rights to Disability Culture

The movement of disabled Americans has entered its second phase. The first phase has been a quest for disability rights, for equal access and equal opportunity, for inclusion. The second phase is a quest for collective identity. Even as the unfinished work of the first phase continues, the task in the second phase is to explore or to create a disability culture.

This historic juncture offers a moment for reflection and assessment. It is an opportunity to consider the aims and achievements of the disability movement over the past generation and in the last few years.

In August 1985, The Disability Rag reported an incident that captured the essence of the disability movement's first phase:

"'It comes to a point where you can't take it any more,' said Nadine Jacobson, sounding for all the world like Rosa Parks. She and her husband Steven were arrested July 7th for refusing to move from seats in the emergency exit row of a United Airlines flight on which they were to leave Louisville after the National Federation of the Blind convention here. 'You lose some of your self-respect every time you move,' she told Louisville Times reporter Beth Wilson. United has a policy of not letting blind people sit in emergency exit rows, because it believes they might slow an evacuation in an emergency , though there seems to be no airline policy against serving sighted passengers in emergency exit rows as many drinks as they want for fear they might become too intoxicated to open an emergency door properly in the event of a disaster. NFB members say it's discriminatory treatment, plain and simple. The airline says it is not. The Jacobsons pleaded 'not guilty' to the charge of disorderly conduct."

Six months later, The Rag related that the Jacobsons had been acquitted of the charge. A half year after that, in the fall of 1986, it announced that Congress had passed the Air Carrier Assistance Act, which amended the Federal Aviation Act to prohibit discrimination against persons with disabilities in airline travel. Yet over the next three years, The Rag reported instances of discrimination against blind and wheelchair-riding travelers, FAA regulations that restricted the rights of disabled airline passengers, including a rule prohibiting them from sitting in exit rows, and the opposition of the NFB, the Eastern Paralyzed Veterans Association and ADAPT to these practices and polices.

Despite the problem with its implementation, the Air Carrier Assistance Act was one of some fifty federal statutes in a quarter century of legislation that reflected a major shift in public policymaking regarding Americans with disabilities. That process began in 1968 with the Architectural Barriers Act and culminated in 1990 with the ADA. In between came such legislative high points as Section 504 and P.L. 94-142. This body of laws departed significantly from previous policies because it sought not just to provide more "help" to persons regarded as disadvantaged by disability, but rather expressed and implemented a fundamental redefinition of "disability" as a social more than a medical problem.

The new-model policies coincided with, and to a degree reflected, the emergence of disability-rights activism. Airline accessibility was only one of the issues spurring that activism. Deaf and disabled activists moved on everything from the presidency of Gallaudet University to the pervasive impact of telethons. But whatever the particular issue at hand, activists were redefining "disability" from the inside.

This activism was the political expression of an emerging consciousness among a younger generation of Americans with disabilities. A 1986 Louis Harris survey of adults with disabilities documented that generational shift in perspective. While only a minority of disabled adults over the age of 45 regarded people with (disabilities as a minority (group like blacks or Hispanics, 54% of those aged 18 to 44 agreed with the perspective. In addition, substantial majorities in every age bracket believed people with disabilities needed legal protection from discrimination, but the largest percentage of respondents holding that view was in the youngest age group, 18-30. Yet only one-third were aware of Section 504. It appeared that the great mass of disabled people had not yet become politically active. Their views reflected a proto-political consciousness, the emerging minority-group consciousness of a new generation.

That younger generation has spurned institutionalized definitions of "disability and of people with disabilities. At its core, the new consciousness has repudiated the reigning medical model, which defines "disability" as physiological pathologies located within individuals. That definition necessarily prescribes particular solutions: treatments or therapies to cure those individuals or to correct their vocational or social functioning. Cure or correction has been viewed as the only possible means by which people with disabilities could achieve social acceptance and social assimilation.

Those who are not cured or corrected have been defined as marginalized by disability. They have been relegated to invalidism. This has meant not just physical dependency or institutionalization, but, most fundamentally, social invalidation.

While the medical model claims to be scientific, objective and humane, within its practice has lurked considerable ambivalence toward the people it professes to aid. In one respect, the medical model has been the institutionalized expression of societal anxieties about people who look-different or function differently. It regards them as incompetent to manage their own lives, as needing professional, perhaps lifelong, supervision, perhaps even as dangerous to society.

The new disability perspective has presented a searching critique of the medical model. It has argued that by locating the problem in the bodies of individuals with disabilities, the medical model cannot account for, let alone combat, the bias and discrimination evident in such actions as the mistreatment and arrest of Nadine and Steven Jacobson. Indeed, disability-rights advocates have argued that the implementation of the medical model in health care, social services, education, private charity and public policies has institutionalized prejudice and discrimination. Far from being beneficial, or even neutral, the medical model has been at the core of the problem.

In the place of the medical model, activists have substituted a sociopolitical or minority-group model of disability. "Disability," they have asserted, is primarily a socially constructed role. For the vast majority of people with disabilities, prejudice is a far greater problem than any impairment: discrimination is a bigger obstacle for them to "overcome" than any disability. The core of the problem, in the activists' view, has been historically deep-seated, socially pervasive and powerfully institutionalized oppression of disabled people.

To combat this oppression, the disability movement not only called for legal protection against discrimination, it" a fashioned a new idea in American civil-rights theory: the concept of equal access. Traditional rehabilitation a policy defined accommodations such as architectural modifications, adaptive devices (wheelchairs, optical readers) and services (sign-language interpreters) as special benefits to those who are fundamentally dependent. Disability-rights ideology redefined them as merely different modes of functioning, and not inherently inferior.

Traditional civil-rights theory permitted differential treatment of minorities only as a temporary expedient to enable them to achieve parity: Disability rights ideology claimed reasonable accommodations as legitimately permanent differential treatment because they are necessary to enable disabled persons to achieve and maintain equal access.

"Access" could have been limited to physical modifications in the personal living and work environments of disabled individuals. Instead, disability activists have pressed forward a broad concept of equal access that has sought to guarantee full participation in society. To ensure equal opportunity, they have declared, equal access and reasonable accommodations must be guaranteed in law as civil rights.

To nondisabled opponents, 'disabled activists have not sought equal opportunities, 'they have demanded special treatment. Disabled people could not, the critics have complained, on the one hand, .claim equal opportunity and equal social standing, and, on the other, demand "special" , privileges such as accommodations and public financial aid (e.g., health insurance). Disabled people could not have it both ways. According to majority notions, equality has meant identical arrangements and treatment. It is not possible in American society to be equal and different, to be equal and disabled.

On this basic issue of the nature of equality and the means of accomplishing it, disabled activists and their nondisabled opponents have had radically different perceptions. And that difference was not new in the 1970s and '80s. It had a long history.

To take just one example in 1949 a spokesman for the National Federation of the Blind testifying before a Congressional committee argued simultaneously for Aid to the Blind (ATB), a social-welfare program of financial assistance, and for what today would be called civil rights. The disability of blindness was a physical condition that incurred significant expense and limitations, he argued, and therefore required societal aid. But it was also a social condition that involved discriminatory exclusion. He quoted the famous legal scholar and blind activist Jacobus ten Broek's "Bill of Rights for the Blind " to the effect that the real handicap blindness, far surpassing its physical limitations," was "exclusion from the main channels of social and economic activity."

Throughout the history disabled activism, advocates like this NFB spokesman simultaneously called for "social aid" and civil rights. like their nondisabled opponents, they saw no contradiction in this position. It was possible in America they implicitly proclaimed, to be equal and to require aid and accommodations, to be equal and different. Indeed, for Americans with disabilities, any other approach to equality seemed impossible.

The disability-movement critique of the medical model has also argued that the complete medicalization of people with disabilities has advanced the agenda of professional interest groups. People with disabilities have served as a source of profit, power and status.

An estimated 1.7 million mentally, emotionally or physically disabled Americans have been defined as "Incurable" and socially Incompetent and have been relegated to medical warehouses. Another ten to eleven million disabled adults, 70% of working-age adults with disabilities in the United States, are unemployed and welfare dependent, while uncounted others languish below the poverty line.

According to the disability-movement analysis, the immediate causes of this marginalization have been public policies. Health-care financing policies force disabled people into Institutions and nursing homes rather than funding independent living. Income-maintenance and public health-insurance policies include "disincentives" that penalize disabled individuals for trying to work productively. Disabled adults have also been relegated to dependency because of continuing widespread inaccessibility and pervasive job-market discrimination.

But according to this analysis, the ultimate cause of their marginalization is that people with disabilities are highly profitable. For that reason, they have been kept segregated in what is virtually a separate economy of disability. That economy is dominated by nondisabled interests: vendors of over-priced products and services; practitioners who drill disabled people in imitating the "able-bodied" and deaf people in mimicking the hearing; a nursing-home industry that reaps enormous revenues from incarcerating people with disabilities.

Thus, concludes this analysis, millions of deaf and disabled people are held as permanent clients and patients. They are confined within a segregated economic and social system and to a socioeconomic condition of childlike dependency. Denied self-determination, they are schooled in social incompetency , and then their confinement to a socially invalidated role is justified by that incompetency .According to this critique, disabled issues are fundamentally issues of money and power.

The disability-rights movement marked a revolt against this paternalistic domination and a demand for disabled and deaf self-determination. That revolt and that demand has been at the center of the controversy over telethons. Who should have the power to define the identities of people with disabilities and to determine what it is they really need? Or parallel to this dispute, how could the hearing majority on the Gallaudet University board of trustees reject two qualified deaf educators to select yet another hearing president? "Who has decided what the qualifications [for president] should be?" asked Gallaudet student-government president Greg Hlibok. "Do white people speak for black people?" Hence the students' demand for a deaf majority on the board of trustees.

But the attack on the medical model has gone beyond merely questioning the motives of nondisabled interest groups. At a still deeper level, that critique has explained the relentless medicalization of people with disabilities as an attempt to resolve broader American cultural dilemmas. In a moment of intense social anxiety: it has helped reassure nondisabled people of their own wholeness as human beings, their own authenticity as Americans. It has done so by making "disability," and thus people with disabilities, the negation of full and valid American humanity.

In order for people with disabilities to be respected as worthy Americans, to be considered as whole persons or even approximations of persons, they have been instructed that they must perpetually labor to "overcome" their disabilities. They must display continuous cheerful striving toward some semblance of normality. The evidence of their moral and emotional health, of their quasi-validity as persons and citizens, has been their exhibition of the desire to become like nondisabled people. This is, of course, by definition, the very thing people with disabilities cannot become.

Thus, they have been required to pursue a "normality" that must forever elude them. They have been enticed into a futile quest by having dangled before them the ever-elusive carrot of social acceptance.

Recognition that "overcoming" is rooted in nondisabled interests and values marked the culmination of the ideological development of the disability movement's first phase. And that analytical achievement prepared the way for a transition into the second phase.

The first phase sought to move disabled people from the margins of society to the mainstream by demanding that discrimination be outlawed and that access and accommodations be mandated. The first phase argued for social inclusion. The second phase has asserted the necessity for self-definition. While the first phase rejected the medical model of disability, the second has repudiated the nondisabled majority norms that partly gave rise to the medical model.

That repudiation of dominant values has been most obvious in the rejections of the medically proclaimed need to be cured in order to be validated. At the time of the Gallaudet student revolt, Eileen Paul, co-founder of an organization called Deaf Pride, proclaimed, "This is a revolt against a system based on the assumption that deaf people have to become like hearing people and have to fit into the dominant hearing society."

As they spurned devaluing nondisabled definitions, deaf people and disabled people began to celebrate themselves. Coining self-affirming slogans such as "Disabled and Proud," "Deaf Pride" and "Disability Cool," they seized control of the definition of their identities. This has been not so much a series of personal choices as a collective process of reinterpreting themselves and their issues. It is a political and cultural task.

Beyond proclamations of pride, deaf and disabled people have been uncovering or formulating sets of alternative values derived from within the deaf and disabled experiences. Again, these have been collective rather than personal efforts. They involve not so much the statement of personal philosophies of life, as the assertion of group perspectives and values. This is a process of deaf cultural elaboration and of disabled culture-building.

For example, some people with disabilities have been affirming the validity of values drawn from their own experience. Those values are markedly different from, and even opposed to, nondisabled majority values. They declare that they prize not self-sufficiency but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community. This values-formation takes disability as the starting point. It uses the disability experience as the source of values and norms.

The affirmation of disabled values also leads to a broad-ranging critique of non- disabled values. American culture is in the throes of an alarming and dangerous moral and social crisis, a crisis of values. The disability movement can advance a much-needed perspective on this situation, It can offer a critique of the hyperindividualistic majority norms institutionalized in the medical model and at the heart of the contemporary American crisis. That analysis needs to be made not just because majority values are impossible for people with disabilities to match up to, but more important, because they have proved destructive for everyone, disabled and nondisabled alike. They prevent real human connection and corrode authentic human community.

Another manifestation of the disability movement's analysis and critique has been the attempts over the past dozen years to develop "disability studies" within research universities. Every social movement needs sustained critical analysis of the social problems it is addressing. Such movements develop their own cadres of intellectuals and scholars who arise from the community and often connect it with academic institutions. Disability studies has been conceived as a bridge between the academy and the disability community.

But what should disability studies look like? Professor Simi Linton, a disabled scholar/activist, and her colleagues at Hunter College in New York have proposed a useful working definition of disability studies:

"Disability Studies reframes the study of disability by focusing on it as asocial phenomenon, social construct, metaphor and culture, utilizing a minority group model. It examines ideas related to disability in all forms of cultural representation throughout history, and examined the policies and practices of all societies to understand the social, rather than physical and psychological, determinants of the experience of disability. Disability Studies both emanated from and supports the Disability Rights Movement, which advocated for civil rights and self-determination. The focus shifts the emphasis away from a prevention/treatment remediation paradigm, to a social/cultural/political paradigm. This shift does not signify a denial of the presence of impairments, nor a rejection of the utility of intervention and treatment. Instead, Disability Studies has been developed to disentangle impairments from the myth, ideology and stigma that influence social interaction and social policy. The scholarship challenges the idea that the economic and social status and the assigned roles of people with disabilities are inevitable outcomes of their condition."

This definition captures, the fundamental features of disability studies as it has grown out of the disability rights movement.

If disability studies is to serve the disability community and movement effectively it needs to define an agenda.. That project should include the following goals:

Disability studies should serve as an access ramp between the disability community and research universities. It must forge a fruitful connection between the disability community /movement and such institutions.

The traffic of ideas and persons on that ramp should flow in both directions. It must be a two-way street. The disability perspective, the insights, experience and expertise of people with disabilities, must inform research, producing new questions, generating new understandings.

At the same time, academic researchers can help bring new rigor to the disability-rights movement's analysis and activism. Collaboration between scholars and advocates can pro; duce a deeper critique of disability policy and the social arrangements that affect people with disabilities and can generate a more fully elaborated ideology of "disability" and disability rights.

Complementing these endeavors, disability studies should also forge a link with disabled artists and writers. This collaboration can support the current flowering of disability arts. It will also promote disability-based cultural studies that can uncover disabled values, explain the social/cultural construction of "disability" by the majority culture and critique dominant nondisabled values.

To implement this agenda, disability studies must obtain support for faculty and graduate students. That support must come in two forms: funding to pay for research and teaching, and affirmative action to recruit faculty and students with disabilities to develop disability studies. We need to build a phalanx of disabled disability-studies scholars and intellectuals.

To succeed and to remain true to its purpose, disability studies needs the active support and involvement of the disability community. Disability studies can then help advance both phases of the disability movement.

Those two phases are not separate and successive chronological periods. They are complementary aspects of the disability movement. The concept of equal access represents a politics of issues. It is the effort of Americans with disabilities to build an infrastructure of freedom and self- determination. The proclamation of disability and deaf pride and the elaboration of disability and deaf cultures express a politics of identity. It is an affirmation, a celebration of who we are, not despite is disability or deafness, but precisely because of the disability and deaf experiences.

These two phases of the disability movement are reciprocal. Each is essential to the other. Together they declare who we are and where we intend to go.

Paul K. Longmore, Associate Professor of History at San Francisco State University, based this article on an address an he gave at a May 1995 conference on disability and the arts at the University of Michigan.