1996 FROM CHARITY TO HUMAN RIGHTS- PEOPLE WITH DISABILITIES
Third Paralympic Congress - Atlanta 1996
FROM CHARITY TO HUMAN RIGHTS: PEOPLE WITH DISABILITIES
Loretta J. Ross, Director, Center for Human Rights Education
P.O. Box 311020 * Atlanta, GA * 31131 * 404/344-9629
"One of the features of oppression is not only the loss of voice but the tools to find it." -- Irving Kenneth Zola
The disability rights and human rights movements in the United States both gained in acceptance and popularity, particularly after World War II. Despite their parallel development, however, there has been no comprehensive integration of a disability rights perspective into the global human rights movement. Similarly, most disability rights activists define their movement as a struggle for “civil rights” rather than human rights, indicating a narrowed interpretation of universally agreed upon human rights standards and norms. The purpose of this presentation will be to affirm the disability rights movement as part of the human rights movement and discuss the intersection of these two movements. This affirmation is most suitably accomplished through comprehensive and shared learning through human rights education. Popular human rights education is vital to co-join human rights and disability rights activists to create a broad-based political movement of all people, regardless of ability, that pressures governments around the world to recognize and be accountable for the human rights of the disabled. For example, the 1948 Universal Declaration of Human Rights specifies that access to education, health care and social services are human rights, yet every country the world denies to its disabled population most of these basic human needs.
What are Human Rights?
Human rights are the rights to which every human being is entitled to enjoy and to have protected, regardless of class, race, gender, age, ability, sexual orientation, nationality, ethnicity, or even sanity. These rights are spelled out in three international instruments: The Universal Declaration of Human Rights (UDHR), the International Covenant on Civil and Political Rights (ICCPR), and the International Covenant on Economic, Social and Cultural Rights (ICESCR). Collectively, they are called the International Bill of Rights. Human rights are categorized in the 1948 Universal Declaration of Human Rights and the two major covenants as: 1) Political; 2) Economic; 3) Civil; 4) Social; and 5) Cultural. In the words of the Declaration, these two sets of rights aim to give all people "freedom from want and fear." These rights are universal, interconnected, and interdependent. Moreover, they are inalienable; they cannot be declared or legislated away.
The UDHR is a declaration of intent; it is not legally binding on the governments that have signed it, but intended instead to establish moral norms and standards for human rights. It was decided by governments participating in the United Nations system to develop the principles of the Declaration into laws that would be legally enforceable to protect the human rights of people in the signatory countries. They developed the ICCPR and the ICESCR so that each country could use the human rights standards expressed in the UDHR to modify its own laws to conform to these standards. It is the responsibility of governments to protect the human rights enunciated in the Declaration.
Most governments that seek to deprive their citizens of their full human rights are on the defensive, using all sorts of justifications for their failures to respect and uphold all human rights. For example, although the U.S. government chaired the committee that developed the UDHR in 1948 and signed the declaration, the U.S. government has long withstood the pressure to ratify the covenants because treaty law is equal in judicial weight to federal law in the U.S. court system. Ratification is required to make the treaty apply to people in the U.S. The Senate refused to ratify the Civil and Political Covenant until 1992. Even with the ratification of the ICCPR, the government made several "reservations" to the treaty, not committing to enforce the treaty if it appeared to contain more protections than those provided by the U.S. Constitution. The U.S. government has yet to ratify the covenant on Economic, Social and Cultural Human Rights.
Because it would require a dramatic restructuring of our economic priorities and spending for social welfare, stubborn resistance by the U.S. Senate is the most significant obstacle in the political landscape of the human rights movement negatively affecting the disability rights movement in the United States. To complicate matters, many western non-governmental organizations (NGOs) have conceded to the artificial separation of human rights, creating the perception in the minds of the American public that human rights issues are limited to civil rights or protection from torture. Those who prioritize civil and political rights over economic, social and cultural rights misuse the term "human rights" to exclude from consideration fundamental issues such as the right to housing, health care, food, education, and social services.
The complex web of political, social and economic forces affecting the worldwide human rights movement dictate social and political realities that offset enforcement of human rights standards. Even in those countries where the covenants have been ratified, a considerable gap exists between the legal human rights of the disabled and the measures undertaken by governments to guarantee those rights, particularly those rights that require governments to provide universal healthcare, universal environments, access to education, etc.
In most situations, denial of people's human rights is because of purely economic reasons. Those whose rights are being denied are portrayed as a burden on society (i.e., immigrants, the disabled, poor people) and are accused of wanting special treatment. Those of privilege who deny these rights arrogate to themselves the power to determine the distribution of resources, or in other words, the power to determine precisely whose human rights will be upheld or neglected.
Creating an Informed and Empowered Disability Rights Movement
Every public policy decision is essentially a decision on how to spend public money. Who decides the priorities? Who decides the distribution? Who is entitled to benefit? Who will be made to suffer?
So the question becomes, How can the disability rights movement establish a comprehensive agenda that expresses its collective vision and develop the broad-based social movement that can politically achieve this agenda?
To begin, we must assume that "our social problems at all levels, local through global, are as much as matter of ethics as they are of structures; as personal and social as they are political and economic." To change our society, we must change our values. Human rights require that we not individualize social problems, such as the women's movement insistence that battering is not the problem of an individual woman, but a societal problem demanding a societal solution. This paradigmatic shift forces an examination of group rights in tandem with individual rights. The disability rights movement must use international human rights standards and norms to develop the values that will guide the movement into developing an agenda to achieve political, economic and social change that universalizes the human rights of the individually and collectively disabled for the overall benefit of society.
For example, a human rights-centered disability policy would not only require that a person in a wheelchair could get in and out of their own apartment, but would require universal access to any apartment or building in that society. Why liberate someone from their house just to shut the door on them at their neighbor's? Or instead of having just one accessible bathroom stall, why can't all stalls be accessible, so that accessibility is normalized, not specialized, in our society? Trust me, it's not only a person in a wheelchair who cannot maneuver in those sardine-can bathroom stalls. In this sense, enforcing the human rights of the disabled would create universal accessibility for everyone, another instance where enforcement of the rights of a "minority" (and I use the word cautiously) brings broad social benefits to all members of society. The onus should not be on an individual to request special treatment, but on society to ensure that equality is real to all people.
The task is to develop an economic agenda designed not only to benefit CEOs of major corporations, but to redirect public and private resources to honor peoples' human needs as well as their human freedoms. Developing an economic, social and cultural human rights agenda for the disability rights movement requires retooling our thinking to global human rights standards, and this retooling is accomplished through human rights education.
To envision what the full realization of the human rights of the disabled means requires human rights education -- the conceptual process of learning and articulating core values, both explicit and implied, that can be used to guide the evolution of the movement.
Human rights education is vital because most people of the world to whom the Universal Declaration of Human Rights belongs and for whose empowerment it was intended, do not know of its existence. The first and primary human right is the right to know one's human rights. This imposed ignorance can only be overcome by universal human rights education that emphasizes and locates a sense of power, connectedness and identity in its participants.
Integration of Disability Rights into the Human Rights Movement
Understanding the human rights framework offers the opportunity to bring together groups with common goals, but different agendas and diverse voices to map out an intellectual and political agenda for the disability rights movement to integrate it into the global human rights movement. It allows us to hear the voices of people with disabilities without building a wall between those who are disabled and those who are not.
This convergence is very important because the human rights movement has too long failed to hear the silenced voices of the disability rights movement. There has been no comprehensive integration of a disability rights perspective into the human rights movement, much to its discredit. This lack can be partially blamed on the artificial separation of human rights mentioned earlier (political/civil versus economic/social/cultural), but I also suspect it is largely because the majority of human rights activists do not see themselves as potentially disabled. Having a disability is not a fixed or static condition, but in fact, disabilities are a set of characteristics that everyone shares in varying degrees and in varying forms and combinations. Disability is multi-dimensional and changes over time. Instead of measuring the number of people with disabilities, we need to measure the number of disabling environments people face because these environments affect all of us. They diminish all of our human rights.
Many of us will bring new energy and constituents into the disability rights movement through demographic changes. As the population ages, an increasing number of people are at risk for physical, social and economic changes that are "disabling" in nature. Chronic diseases like AIDS and Alzheimer will also enlarge the disabled population. There are significant increases in both the general rates of disability and the specific rates of disability-related chronic disease conditions. Moreover, people with disabilities are living longer. Self-help and disease constituency groups must be broadened to reach out and include allies. Cross-disability groups provide a viable model, but must expand to include all people.
Lessons Learned from Other Social Change Movements
The disability rights movement emerged from the 1980s with a strong sense of empowerment, created by consolidation of constituencies, and clearer articulations of aspirations. The movement also enhanced its relationships with other movements, most noticeably the women's rights and civil rights movements. A new era of activism emerged, dramatized for the whole world by the members of ADAPT chaining themselves to buses to demand access to mass transportation or the students at Galludet University in Washington, D.C. demanding the appointment of a deaf president. Major inroads have been made at the international level, such as the UN Declaration of the Year of the Disabled, of which we should be very proud.
No universally accepted terms were established (handicapped or disabled?), but the rejection of pejorative terms like cripple or deaf and dumb indicated that self-determination and self-awareness molded the movement. There evolved a disability culture and disability pride movements that moved away from an exclusively negative characterization and experience as activists began to radically question automatic prejudices towards people who are disabled.
This activism signaled the consolidation of a political constituency of the disabled that began to be recognized by political parties who began to court these votes, like George Bush did in 1992 promising to bring "the handicapped into the mainstream" of American society.
The task now is for the disability rights movement to profit from the lessons of other social justice movements.
In a lesson learned directly from the civil rights movement, the greatest danger lies in our society defining disability rights as "special rights" -- a limited definition that not only marginalizes the human rights of the disabled, but that shares the general contempt the privileged have for those whom it defines as the "other." Special rights evokes the specter of competing rights in a pool of dwindling rights.
I believe the disability rights movement in the U.S. can best draw on its own history in understanding this particular dilemma. A great deal of attention was paid to people who were disabled due to war as part of the "special debt" owed by the United States to its soldiers. But society, as whole, is not taught to feel any special obligation towards other disabled adults. And even that minuscule sense of obligation for war veterans is easily dissipated when the society decides that the costs to repay the debt are just too high.
The purpose of human rights struggle is not to ask for favors or beg someone's "good will" but to demand full and equal rights with every other human being on the planet. Not special rights, but equal rights.
Another danger to the disability rights movement (as well as to other social justice movements) is devolution of the responsibilities of the federal government. Conservative cost-cutting combined with federal deregulation, politicized through a "states' rights" battlecry, might mean a return to segregation for people with disabilities. Instead of universalizing human rights, it may mean reducing these rights to the level that each state feels it can afford. People who are disabled may face a 50-state patchwork of human rights protections.
The disability rights movement cannot afford to repeat the mistakes of the civil rights movement, aiming its vision too low to fulfill all of its needs. The U.S. civil rights movement, despite the vision of Dr. Martin Luther King, Jr., never evolved into the global human rights movement Dr. King wanted. Instead, it allowed itself to be narrowly defined as a civil rights movement that limited itself to ending de jure or legal segregation. For the past 30 years, it has had to fight de facto racial discrimination that violates economic, social and cultural human rights because Dr. King's comprehensive human rights vision was never fully implemented. Racist backlash against civil rights forestalled even that limited progress.
The lesson learned is to not settle for anything less than full human rights. The battle is not just for "access" or "opportunity"; we must also must focus on "outcome." Just because someone did not intend to discriminate or has offered an opportunity (if one makes subjectively sufficient effort), does not mean the social obligations for human rights fulfillment have been met. This change may be a bit unsettling because just when we're learning to be a civil rights movement, along comes someone who says that we don't need civil rights, we need human rights.
To quote Irving Zola one last time, "Prejudices and paradigms run deep. So deep that even a revolution will not overturn them in a single generation." Prejudice against the disabled has been stoked for thousands of years. One ADA law will not overcome that. In fact, even as the United States seeks to slowly incorporate the law into our society, a backlash movement against the law has flourished, demanding its repeal.
What the world needs is an informed and empowered human rights movement for disabled people that demands a universal disability policy and a universalized environment, not as special rights, but as human rights to overcome the prejudices that seek to silence people with chronic diseases and disabilities. The key to launching this movement is human rights education, not only within the disability rights movement, but among the entire American public. Human rights education is change-oriented, and gives people the tools to build a value system capable of creating more democratic communities in its emphasis on accountability, reciprocity, and people's equal and informed participation in the decisions that affect their lives. The creation of a holistic human rights educational process signals the development of a new field of social change that integrates human rights education with actions for economic, social and cultural rights that assist individuals and communities in understanding laws and their protection not only as entitlements, but as a responsibility, a social responsibility. In the process, multi-issue community organizing moves beyond civil and political rights to a more inclusive human rights framework. Human rights education calls attention to the structural problems of our society, and creates an ideological framework for effective political education for social change.