Preserving oral histories of individuals with disabilities is an important aspect of ensuring a comprehensive historic record. There is a dearth of oral histories of this population, especially those that pertain to institutional living. We take for granted that the expertise on intellectual disabilities comes from people who do not have intellectual disabilities themselves. However, there may be significant advantages in including the perspectives of the beneficiaries of that expertise in our accounts of intellectual disability. Accordingly, in this paper we present some of the benefits of preserving oral histories of individuals with intellectual disabilities, describe a few examples of oral histories, and encourage individuals and organizations to take a more active role in collecting such autobiographical information. In making our points, we have not attempted an exhaustive treatment of the issues surrounding the topic of oral histories of people with disabilities.
Why Is It Important to Preserve Oral History?
Irrespective of the subject matter, historical accounts are most valid if they are provided by people who experienced the conditions or events that are being preserved. For example, a history enthusiast of World War II would be riveted by a pilot's description of an aerial dogfight during the Battle for Britain, not only because it is an exciting story, but because it offers realistic details that are not present in more removed or abstracted accounts. Indeed, such an account might be more reliable than a written account by a professional historian, or at the very least, it adds a dimension of truth that can be provided only by the person who was closest to the action. By contrast, an enthusiast of the history of people with intellectual disabilities would be hard pressed to find an account of the care and treatment of such people that was provided by a person who experienced that care and treatment. In fact, nearly all of the information about people with intellectual disabilities, including historical information, was written by people who did not experience it. Clearly, people with intellectual disabilities have much to contribute to our knowledge of what has happened to them and how we can we can be of greater assistance.
In recent years there has been a resurgence of interest in the history of disabilities (Braddock, 2001), which may be due to, in part, to the maturing of this field of study and the nurturing by recent excellent works on the history (Ferguson, 1994; Smith, 1985; Trent, 1994; Wickham, 2001). Perhaps the most obvious gap in our preservation efforts is the dearth of oral histories and recollections of people with disabilities themselves. This kind of information is important because it can convey intimate and frank depictions that are rarely observed in an official record, although such perspectives can enhance our understanding of a situation or event. Too often, the written record of service bears little resemblance to the experiences of those exposed to it. For example, the glowing annual report written by the institutional director is often directly contradicted by the witness of those who were held at the same institution. Worse, parents and consumers who were considering the institutional alternative were sometimes duped into believing that life in the institution would provide a healthy, high-quality lifestyle, as can be seen in the following oral history transcription (Dillon, 2000):
Well, they told me that—they just told me that the things that the social worker told them when the social worker came over to the house about—I would get my therapy and make new friends and I would learn and grow and stuff. One thing that they did tell me that never happened from day one among other stuff was that I would be able to keep my own possessions such as clothes, radios and stuff like that. And I want to tell you that I think that is just a ploy for parents who were new at this and didn't know that—the State just painted this beautiful picture which it wasn't. It really wasn't. (p. 38)
Such misrepresentation is an example of the devaluation of people with intellectual disabilities. Of course, this portrayal does not apply to all people with disabilities, and significant progress has occurred in the disability field since the institutional era in United States. Nonetheless, it seems logical that more autobiographical accounts of people with intellectual disabilities would support the continuation of that progress and help safeguard the rights that have been won, particularly for those who might otherwise be subject to the above prejudices.
We suggest several reasons why there are so few oral histories of people with intellectual disabilities. For one, many individuals do not have the skills needed to document their experiences and reflections. Others might find it too painful to revisit unpleasant memories. Perhaps there is a general impression that people with intellectual disabilities do not play an important social role or make a sufficiently valuable contribution, so that preservation of their histories is deemed unproductive. Certainly, it is fair to question the validity of a historical account of an individual with a cognitive impairment, although most of the research in the area of long-term memory retention for people with intellectual disabilities leans toward the conclusion that people with intellectual disability possess long-term memory capacity equivalent to that of people without intellectual disability (see Turnure, 1991, for a review). It is relevant to note here that Braginski and Braginski (1971) found that individuals' reasons for why they were admitted to an institution for people with mental retardation were more accurate than what was contained in the official institutional record.
If we support the contemporary aspirations of choice and self-determination, it would seem that we would also value the experiences and perspectives of people with intellectual disabilities and see the importance of preserving them. It might appear to be an unlikely juxtaposition, but opportunities for greater decision-making and autobiographical information both accrue personal benefit. In reflecting on their pasts, people often gain insight into their own lives and personal problems. For example, for a person who has experienced trauma, it can be therapeutic to revisit the event by remembering what happened (Lawless, 2000). Recollecting and verbalizing unpleasant events may facilitate acceptance of the event and may help individuals develop a better understanding of their circumstances and consequences. In this regard, participation in the oral history process might be of direct benefit for people who must live with traumatic memories.
Oral History Examples
There are few published accounts of first-hand recollections and histories of people with disabilities who lived in institutions. For example, in Inside Out Bogdan and Taylor (1982/1994) presented the recollections of two individuals who spent many years living in an institution for people with intellectual disabilities. Their views and observations add an essential component to our understanding of the institutional experience. In the video Fred's Story, we hear the narrative of a man who survived an institutional experience and who was currently a comfortable member of a small New England town (Neudel, 1996). Fred discussed important elements of his life and how he was able to finally leave the institution. In another account of institutional survival, five individuals described their lives before, during, and after their ordeal at Willowbrook State School in the film Unforgotten . . . Twenty-Five Years After Willowbrook (Meskall, Fisher, & Fisher, 1996). Additional autobiographical accounts of prejudice, stigma, and segregation resulting from institutional living were recently presented in the life stories of individuals with intellectual disabilities in the United Kingdom (Atkinson, 2000). All of these stories constitute historical documents that capture the details of life during the institutional era. A recurring theme is that those who endured the institutional conditions were not only victims of oppressive systems; they were resilient survivors of those systems.
Large numbers of oral accounts about a particular kind of experience permit inferences about the normative and exceptional aspects of the experience. For example, Steven Spielberg, creator of the movie Schindler's List, has established the Shoah Foundation (1994), whose members ambitiously seek to collect the oral histories of people who were placed in Nazi extermination camps. Already, over 50,000 histories have been collected. There is an urgency to collect more because the Holocaust survivors are aging rapidly. Unless their stories are told soon, they will be lost. Fortunately, because of this project, their accounts can live on indefinitely and benefit future generations. Similarly, we are approaching the end of the institutional era. Many people who lived in the institutions are also getting older. Their stories could influence the future of the field of disabilities. Unless we help preserve their stories, they too might be lost. Accordingly, the National Historic Trust on Mental Retardation has collected a sample of 17 oral histories of people who lived in institutions (Dillon, 2000). This collection will soon be complemented with a related set of 20 oral histories of parents whose children lived in those institutions.
We have learned a great about the lives and times of people with intellectual disabilities through the writings of historians and from what we have witnessed ourselves, but first-hand accounts of the experiences offer information that may validate, complement, or even contradict what we hold as true. A great deal has been written on important issues in the field, ranging from efficacy of special education to the value of community inclusion, and people with disabilities have much to say about these concerns that can increase our understanding of them. Indeed, there must be hundreds, if not thousands, of people with intellectual disabilities who would have much to say if given the opportunity to provide an oral history. If that is to happen, a concerted effort must be made to assist these individuals in preserving their experiences and stories. We believe that organizations that support people with disabilities already have the capacity to assist individuals in recording their personal stories.
NOTE: The authors thank Margaret Gould and the One to One/Wall Street Charities Fund for their support in the collection of oral histories. This work was also supported in part by New York State Office of Mental Retardation and Developmental Disabilities.
Authors:Michael Dillon, EdD, Assistant Professor, Special Education, School of Education, Dowling College, Oakdale, NY 11769 ( firstname.lastname@example.org). Steve Holburn, PhD, Research Scientist, New York State Institute for Basic Research, Staten Island, NY, 10314