Defining Our Terms
The field of advocacy has changed over the years - like 2019. There are some practical applications of these changes, and the changes themselves have been challenging in some cases. Just the language we use to talk about advocacy presents a challenge.
In the advocacy community, we have spent a great deal of time trying to find the right language to express our complex relationships and activities. Our words are critical since they must convey the essence of many concepts. Some of the terms that have been used in the past have done disservice to the realities they are intended to express.
It is difficult to agree on the words to describe our organizations. In their early history, many groups used the terms "support groups," "patient groups," or "voluntary agencies." We have decided here to use the term "advocacy organizations." We hope that this term describes the proactive and engaged nature of these organizations—from services for affected individuals to research and policy endeavors.
Whom Do Advocacy Organizations Serve?
Many years ago we would have said "patients" without a second thought. But "patient" layers on the patronizing attitudes inherent in the medical system as it once stood and may imply a passivity that hinders involvement in the advocacy that can enhance their lives. People cannot be reduced to their condition; they are affected by it, but should not be defined by it. Also, many of the individuals served by advocacy organizations are not patients, and affected individuals may not be sick. We also approach the term "consumer" with some reluctance, although it doesn't carry with it either the stigma or dependent connotations of the word "patient."
Further, we find it important that we not refer to the condition as a "disease" or "disorder." Both terms suggest sickness and disability. Some conditions are associated with very serious illnesses, but it is important that we not reduce a condition to a list of symptoms or transmit the stigma of disease or disorder to a condition.
Individuals Involved in Research
Another important term describes individuals involved in research, sometimes referred to as "subjects." That terminology reduces the individual to little more than a laboratory specimen or data point. We chose the term "participants."
Words We Use
When speaking of individuals working to improve the lives of those living with genetic conditions, the words we use should convey the power and experience of those individuals. We see this as a first step to recognizing their mission.