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A Word from the President
September 27, 2010
We Are All Honored Guests at the Table of Life
In my forty years of experience in disability and human rights advocacy across the globe, I have seen that people with intellectual disabilities are routinely denied basic human rights, protection under the law, opportunities for participation and access to their society. Even today, several million children and adults with intellectual disabilities remain incarcerated in large congregate institutions. Since the disability movement in the United States began in the late 1960s, our society has made great progress in this area, but in large parts of the world, these issues remain deeply embedded in the cultural and social fabric of our global society.
As a fine art photographer, I recently had the opportunity to present an exhibit, “Flying Ladies,” in the Miami Design Preservation League Gallery in South Beach Miami, Florida. This exhibit incorporated the art deco and streamlining design elements of classic cars from the 1930s, specifically their hood ornaments. In my research, I was stunned to discover that the streamlining design movement ran parallel to the eugenics movement during this period.
The streamlining movement was a product of advances in aerodynamic design and transportation technology to create more efficient and powerful designs to increase speed and efficiency. The streamlining design movement quickly progressed into fashion, architecture, appliances and tools. The streamlining movement occurred during the Great Depression, and both the industrial leaders and the American public began to believe that advances in science and technology would lead inevitably to a more perfect and prosperous society.
People began to think that advancing science and technology would offer solutions to all social and political problems. The central streamlining concept, the elimination of aerodynamic drag, could be applied to society in general. The notion was that by eliminating drag in society, specifically the people who were perceived as not being able to contribute to social and economic progress, we could build a better society. Many of the leaders of the streamlining design movement were also in leadership roles in the eugenics movement. The precepts of streamlining affirmed the basic assumptions of the eugenics movement that the valued core of society – the strongest, healthiest contributors – would be the foundation of future progress. Individuals who appeared to consume more than they contributed were perceived as a drag on society and became candidates for elimination or at least segregation and isolation.
As the eugenics movement progressed from its inception in the early 1900s, people with disabilities were increasingly seen as defective and an impediment to future social progress. Twenty-seven states passed sterilization laws that were applied to people with disabilities. This period also saw an explosion in institutionalization as a way to segregate and isolate so-called defective individuals from society. During the eugenics movement, people feared that if people who were deemed to be defective were allowed to procreate, they would pollute society’s gene pool. Ultimately, the eugenics movement resulted in tens of millions of people with disabilities being placed in large government institutions around the world.
Although the ideas of streamlining and the eugenics movement lost credibility during World War II, we are left with the fundamental question of why a person with a severe disability should be treated well. Ultimately the answer is a constitutional, religious, spiritual, humanitarian or legal one. In the American paradigm, the rights of the individual are paramount and the role of the government is to serve the interests and protect the rights of each individual citizen. Globally, this paradigm continues to be challenged by a social utilitarian perspective, where the common good is the dominant value and the rights of the individual are subordinate to the collective interests of society. Much like the streamlining movement, the valued core of society is perceived as the foundation of future progress. In the social utilitarian view, individuals who are not part of the valued core and who are not seen as being able to contribute to social, political and economic progress, may not be given access to opportunities and protection under the law.
In large parts of the world, people with intellectual disabilities are seen as nonhuman, better off dead, a threat to society, animals, defective, bad seed or possessed by demons. These imposed societal role identities have a devastating impact on people with disabilities. Yana Buhrer Tavanier, a talented and accomplished photographer, documents conditions in institutions in Bulgaria. For more information, read the story of Tavanier’s experience while visiting an institution.
Many of these adverse role identities fall under the general concept of social utilitarianism. Dr. Peter Singer, who is the Ira W. DeCamp Professor of Bioethics at Princeton University and was listed as one of Time Magazine’s one hundred most influential people in the world, argues that parents have the right to kill a disabled child in the first twenty-eight days of life, particularly if they intend to replace the disabled child with a healthy child.
Singer’s utilitarian position argues that quality of life is based on a person’s capacity to experience pleasure, happiness and self-fulfillment, and that life is not inherently worthwhile. In the utilitarian position, some lives are better not being lived at all. Singer’s ethical perspective operates within the traditions of ethical universalism and utilitarianism, the doctrine founded by Jeremy Bentham, a secular humanist, who argues for the greatest happiness for the greatest number – a calculation which may need to be offset by sacrifices by individual members of society.
The global price of such utilitarian views is that millions of children and adults with intellectual disabilities have their lives wasted, living in conditions of unimaginable degradation, isolation and neglect. In many parts of the world children with intellectual disabilities are torn from their families and placed in institutions, they are unequal before the law, are only educated under protest, are forced to engage in labor for which they are not compensated, are assaulted and exploited in every imaginable way, living without basic amenities often in appalling filth, are denied medical care and are isolated from any semblance of human care and respect, all through no fault of their own.
In social utilitarianism, the decision of who belongs to the valued core and what constitutes the greatest social utility is ultimately a political decision, and as political winds change, any one of us could find ourselves or our family members excluded from the benefits and protections of the societies valued core.
The genius of the American experiment is that all citizens, regardless of ability or disability, are afforded inherent value and equal protection under the law. Our Declaration of Independence states, "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are life, liberty and the pursuit of happiness. That to secure these rights, governments are instituted among men, deriving their just powers from the consent of the governed.”
It is imperative that all of us, as both citizens and members of the human race, stand in firm opposition to ideology that argues that some of us are discretionary because we are perceived as not being a member of the valued core.
Keystone’s forty-year vision is that all people, regardless of ability, are honored guests at the table of life.