Changing Our Stories: How One Couple Left an Institution

Most of us are defined by stories: those that we tell about ourselves and those that others (family, friends, and professionals) tell about us. These stories help shape how we see each other. If they are stories of optimism, courage, and capacity, then the possibilities can seem endless and worthwhile. However, if the stories are pessimistic, debasing, and negative, then assumptions about what is possible become equally limited and confining. This is what happened to Mary and Ron.

During their childhood and young adulthood, Mary and Ron were confined to a large institution for people with intellectual disabilities in Salem, Oregon, known as the Fairview Training Center. The stories that others told about them came in the form of professional assessments that used words such as “irresponsible,” “rather plain looking,” and “feeble-minded.” Due to their own efforts and the work of others, Mary and Ron were able to move out of the institution when they were both in their 20’s. Ron and Mary asked for permission to move out of the institution. They persuaded some of their family members to support such a move. Slowly but surely, they began to change their stories. Gradually, words such as “hard-working,” “kind,” and “gentle” started to be part of the stories. Once in the community, Ron and Mary showed a persistence and determination to achieve as much independence as they could: finding jobs they enjoyed and joining an advocacy group of people with developmental disabilities known as “People First.”

Over time, Ron and Mary became a couple and have shared their lives together in the community for almost 50 years. Ron (now 82) and Mary (now 75) have accomplished a lot in those 50 years, but the biggest accomplishment was taking control of the stories that shape their lives.

One of the ways that stories can be changed–and possibilities enlarged–is a simple effort to do what is called “assuming competence.” For years, people with intellectual disabilities were negatively defined by the limitations that society in general and professionals in particular placed upon them. Opportunities were closed off because abilities were assumed to be inadequate. Over the last few decades, self-advocates, family members, and some professionals have challenged those assumptions. A strategy of “assuming competence” has replaced stereotypes of “assuming incompetence.” The changes do not happen instantly. Assuming competence does not mean that effective and durable supports are not needed. They are. Rather it means that when problems arise, or programs fail, the issue is assumed to be with the type and quality of support provided rather than with any individual deficits previously attributed to Ron and Mary. If a job placement fails, then assuming competency means that the appropriate response may be to find a better vocational match for the worker rather than assuming that the worker’s lack of individual capacity was to blame. Assuming competency begins with listening even to those who communicate with behavior rather than words, and with expecting stories of individual spirit and personal value to emerge.

Ron and Mary have succeeded outside the institution because of their own efforts first, but also because they have been surrounded by a supportive community of friends and professionals who know their stories well, and are happy to tell those stories to others. We need more stories of achievement and independence. Assuming competence is one way of making those stories real.

Ron and Mary have lived all of their lives in Oregon, and have long histories as community activists for disability rights. They are now retired but remain active in their community. Phil Ferguson has known Ron and Mary for almost 40 years and has often interviewed them about their experiences and perspectives.