ABSTRACT
The history of persons with intellectual and developmental disabilities is expressed predominantly through the voices of others – the voices of professionals or family members or policymakers who have not experienced the reality of life with a stigmatizing label. In his presidential address to the American Association on Intellectual and Developmental Disabilities, Hank Bersani (2007, 400) reflected on this reality of two worlds: the world of persons who are defined by disability and the world of those doing the defining. He emphasized this divide by examining the negative power of a label, which creates “narrow lives by people defined by it – lives devoid of any of the facets that we find lend our lives dignity, afford us respect, and make our lives comfortable.” Bersani’s speech was given at a time when nomenclature was changing and the old term of mental retardation was being removed from the lexicon; however, it seems that each time the language has changed, the prejudices have not. As Bersani points out, “The fact of stigma is that the status of the lives of these individuals transfers in society to the label” (Bersani 2007, 403). It is this stark reality, and thousands of years of perpetuation of the “othering” of persons identified as having what we now refer to as intellectual and developmental disabilities, that has fueled the quest for an authentic commitment to human rights. The ever-burgeoning disability rights movement is an effort to ensure that persons with intellectual and developmental disabilities are seen as persons who have the same rights as any other citizen and that these rights, while having rhetorical power, are not just empty rhetoric but meaningfully enacted in a way that includes a commitment to persons with disabilities speaking in their own authentic voices.
