One of the greatest challenges faced by families and advocates alike is finding the “right” vocabulary. If you use the right words, your message will be clearly heard and, hopefully, welcomed by the listener. Words are powerful things. With certain terms, we can reframe the discussion and hope to see a reframe of the solutions.
Families learn to use jargon to talk to clinicians or insurers or school administrators from the beginning. We talk about disorders instead of needs. We discuss IEPs, discharge plans and neuropsychs. We hope words will help us understand this new world and we hope that using its language will build bridges. But along the way we find that using the terms others are comfortable with doesn’t usually move them to change.
Sometimes parents and advocates alike make a conscious effort to reframe the discussion. Family organizations such as PAL might insist on reframing a concept such as “mental health treatment” into “family driven care” in order to push for changes in how mental health services are designed. “Mental health treatment” conjures up an image of a child and family passively receiving treatment selected and delivered by an expert, while “family driven care” describes a model where families actively participate and are recognized as experts too. We hope that words will lead to actions which will result in better services and outcomes for our children and youth. And former “experts” will look at families and youth differently — as informed partners.
But there is another reason to choose words carefully. Parents and youth know how they feel when certain terms are used. Some words are make us feel respected while others feel derogatory. Some terms take away power while others make us feel powerful. Describing a family as dysfunctional, for instance, robs parents of their strengths. They feel judged, unworthy and unable to change that perception. On the other hand, when a family is described as a “resource” for their child or a “strong” family, they feel empowered and valued. As one parent so eloquently put it, “I just want to be seen as part of the solution, not part of the problem.”
One of the first people who taught me the importance of choosing the “right” language was Trina Osher. Trina is the president of Huff Osher Consulting and was a driving force in designing terms such as family-driven care. She once wrote in an email, “Make it your mission to bridge the vocabulary across systems. It is necessary to introduce our frame in ways that make it possible for new audiences to relate it to their frame and see the value in making the paradigm shift that goes with the new vocabulary.”
Choosing the “right” words requires discussion and honesty. Do we select a specific word to expand eligibility? To restrict services? To engage families or alienate them? To support or disempower youth? Language is important to families. Parents share stories of the words others use to describe their child, their family and their experience. We know it’s important to hold people accountable for the words they use. We can gently remind or strongly insist on certain terms.
But either way, words matter.