Wordsmithing the Journey

By Janet DesGeorges, Executive Director, H&V Headquarters

Has anyone ever wordsmithed you when you have been describing your child and/or your journey?

“Hi, I have a daughter with hearing loss.”

“Excuse me, it’s not hearing loss, it’s hearing level.”

“Hi, I have a daughter who is hard of hearing.”

“Excuse me, it’s not hard of hearing it’s ‘deaf’”

“Hi, I have a daughter who is Deaf.”

“Excuse me, its not Deaf, it’s ‘hearing impaired.”

“Hi, I have a Deaf daughter.”

“Excuse me, you should use people first language.”

You can read other articles at the Hands & Voices website on some of these conversations we’ve had over the years on labels, but my interest in writing this article stems from serving on committees where the conversation about what to call whom, and who gets to decide, often becomes a sticking point we have to navigate through in the production of materials and/or projects. Who does get to decide? Can a group come to consensus or compromise? Or is there a person in the room who has the most ‘right’ to have their word(s) used?  (Would that be the parent, the deaf individual, the community representative and/or at times, the government-approved definition?)

After attending a conference where the term ‘language deprivation’ was used so many times I wanted to crawl under my chair, I sat in a lobby and talked to some colleagues about how that made me feel as a parent. I KNOW I needed to ensure good language development in my child, I KNOW I needed to provide good language and communication access as early as possible, but somehow those words brought feelings of shame and judgment about my parenting. Out of this conversation, we began a movement called The Fostering Joy Project – really to help parents reclaim the joy of parenting when sometimes we feel like the fear of not doing the right thing is on us like a ton of bricks–especially in the beginning of our journey as parents of deaf/hard of hearing kids.

“I have a daughter who we sometimes call deaf, sometimes hard of hearing, but most of the time we just call her ‘Sara’.”

Do words matter? Is it ‘people first’ language or identity first language?  Is it ‘hearing loss’ or ‘hearing level’?  Is ‘deprivation’ really a good word to be using with families? Who gets to decide? Are our children, deaf, Deaf, Deaf/Hard of Hearing, or hearing impaired?

I think we would all agree that words do matter, that they are important and can hold power! How can conversations within a system occur so that varying perspectives are both respected and include a diversity of thought leadership when it comes to the words we use?

I recently went through a series of meetings where a diverse group of stakeholders were trying to settle on a particular term for an identifiable part of our population. There were many meetings where we discussed different terms/definitions, with different perspectives. There was a sense by some that because another group had settled on a certain term that was what we should do. In the end, we came to consensus on a term/definition, and in identifying it in the document we made this disclaimer, “Language is always in flux when used to “categorize” people for purposes of discussion and services, but for ease and clarity of communication, a term was chosen for this document’s focus, ____.”

In another meeting, terminology was employed by the community members who were defining a term, only to be challenged by another ‘community’ that they were not using the ‘right’ words, and that it would be confusing. An interesting dialogue ensued, with citations from researchers and others, only to come to a standstill at the door of: “we have to call it something and move on.”

 It is important for us to honor and be openminded to the differing stakeholder, parent and community perspectives on word usage in self-identity, descriptive terms and systemic conversations about what words should be used, when. I often find myself engaged in ‘wordsmithing’ during projects and wonder what to do when a group hits an impasse, and how to ensure that all perspectives are considered during development of materials and projects. I think honest and open communication about word preferences are possible when we stay open-minded, understand that sometimes we may not all feel the same way about certain words, and ultimately think about the audience we are trying to reach. It reminds me of the way I have introduced the story of our daughter Sara over the years – “I have a daughter who we sometimes call deaf, sometimes hard of hearing, but most of the time we just call her ‘Sara’.”

H&V Communicator – Spring 2020