Awareness of disability culture in research

Abstract

People with disabilities enrich the diversity of society and expand our realm of possibilities. The continued conflict about the role of disability in American society has received particular attention among the public and scientific community due to an accident involving a prominent Hollywood celebrity. On May 27 of 1995, Christopher Reeve was injured in a riding accident. When Mr. Reeve experienced a traumatic spinal cord injury (SCI), the issue of disability in America was brought to the forefront of our collective conscience. The current discussions prompted by Christopher Reeve have stirred many deep-rooted concerns which had been lying below the surface. The focus on cure research in spinal cord injury brought about by the testimony and press coverage surrounding Christopher Reeve has awakened memories of former times when research for a cure was the driving force while the quality of life as defined by the ‘patient’ was a non-issue. In current culture, people with disabilities are striving for recognition of their abilities and accomplishments with the goal of achieving greater integration into American society regardless of any functional limitations. Disability has very diverse origins and, therefore, searching for a cure opens the question as to who are we trying to cure. In other words, which disability should be the focus of cure research and what justifies one disability having a higher priority over another. Should public policy address cure research from the perspective of developing technologies and procedures which eliminate individual disability or should public policy take a societal viewpoint to accommodate citizens regardless of their functional capabilities?