In a Perfect World

From Tissues to Tenacity: a Quarter Century of H&V

By Leeanne Seaver, H&V Headquarters © 2021

In the middle of the auditorium full of medical, audiology, and education professionals working in the field of deafness was a small circle of folding chairs for the invited parents. And on every other chair, there was a box of Kleenex.

Like the other parents there, Janet DesGeorges and I had been asked to share stories of raising our deaf children. What I remember most about that workshop was how the facilitator (a renowned audiology professor known for his emphasis on family counseling) was clearly bent on stirring up strong emotions—and everybody was watching as if this were some kind of after-school special. He posed leading questions like, “What has been the effect on your marriage?” or “So dreams can be crushed when you learn your baby is deaf—how did it feel for you?”

Finally, one of the dads had had it: Hey, I know you’re trying to make me cry… it’s not happening, so just stop.

True story.

Acknowledging parental-grief typified family support in the 1980s to early 90s. For some, even that represented an evolution in clinical practice, after all, the medical model had come of age before there was a mandate to educate children with special needs. But this Welcome-to-Your-Deaf-Baby-Here’s-Your-Tissue approach saw families as one-dimensional, feeble, and drowning in their tears.

If demonstrating sensitivity was that facilitator’s goal, it was completely lost on the families being manipulated under the spotlight at that conference.

For Janet and me, that myopic view of families was as inaccurate as it was offensive, and we weren’t the only ones who felt that way.

The Genesis of EHDI Systems

In fairness, support for families hadn’t been built into systems yet because the systems themselves weren’t built when Hands & Voices was emerging in the early 90s. Pioneers in the field like Christine Yoshinaga-Itano and Mary Pat Moeller were still having to prove the unique impacts of hearing loss on infants and toddlers. Early researchers and practitioners were standing on ground hard won by Marion Downs who spent her career convincing the medical industry that babies could and should be tested for hearing loss at birth back in the 60s and 70s.

It had been an arduous, uphill climb. “There were many in the medical field who felt parents couldn’t handle the news that their baby was deaf,” recalled Yoshinaga-Itano. That was one of the attitudes the Marion Downs National Center (MDNC) hoped to change.

The Colorado-based MDNC was established in 1996 thanks to a federal grant from the Maternal and Children’s Health Bureau in Washington DC. It introduced the nation—if not the entire world—to the concept of an integrated system for newborn hearing screening, identification, early intervention, and follow-through services. “Colorado was the first to diverge from a screening-only, exclusively-medical model,” Yoshinaga-Itano explained. “We took a comprehensive approach because the issues are complex. We didn’t look at Deafness as a ‘disease’ but as a sensory difference.”

“Colorado defined for the world a system that wasn’t just medical-technical, but holistic. From the start, the goal was to place parents and DHH adults in the driver’s seat instead of the caboose… to shift focus from ‘disability’ to all the possibilities and potential for each child and family.” – Christine Yoshinaga-Itano, PhD

Moreover, with Hands & Voices, Colorado had the only statewide, parent-driven family support mechanism in place, as well as Deaf and Hard of Hearing (DHH) people on staff from the very beginning. “It took years for that to be systematized elsewhere,” Yoshinaga-Itano added.

Using Our Hands and/or Voices

I’m not saying we don’t need tissues sometimes. Parents can cry if they want to… rejoice, shutdown, engage, disengage, laugh and/or cry if they want to because we are not a one-hit wonder when it comes to raising a child is Deaf or Hard of Hearing. Far from it. We have a lot to say (and sign!). If developing systems were insightful enough to ask what end-users thought, they should’ve been inviting us to the party from the git-go. We thank those pioneers of what would become known as EHDI (Early Hearing Detection and Intervention) because that’s exactly what happened in Colorado.

A small but like-minded Denver parent group that included me and Cheryl DeConde Johnson (who was both a parent and a professional) boldly voted to end the relationship with its longtime sponsoring clinic in 1994. We didn’t want to be under anybody’s ideological thumb, so we decided to start something new that united everyone on the same goals regardless of the mode or method of communication even if we didn’t have a name for it yet. That part took some time.

In 1996, we voted to become Colorado Families for Hands & Voices. That was the first meeting Janet DesGeorges attended, which was, in and of itself, a catalyst. Janet had recently been hired as the parent consultant to the MDNC. This was so exciting—a parent who was not only invited to the systems table, she was paid to be there, and entirely capable of speaking truth to power. What a game-changer.

Tenacious H&V

Before we knew it, H&V was everywhere. We were presenting at state conferences and asked to join every manner of taskforce, planning committee, workshop, and DHH legislative initiative.

Not everybody was enthused, admittedly. Those who liked things the way they were—the old school, paternalistic, and hierarchical stalwarts who called us (and I quote) “uppity parents” and “hot to trot.” Suffice it to say, everybody didn’t appreciate the Hands & Voices impact.

But we were the change agents. And what we changed was the culture. Certainly not by ourselves, but by joining the conversation collaboratively and productively in a climate made conducive by the MDNC and the amazing Camelot that was the Colorado Department of Education during Director Lori Harkness’s reign with Cheryl Johnson, EdD, as DHH Consultant.

Hands & Voices made believers out of the naysayers, and it still does. This organization grew from a conversation between stressed-out moms over a kitchen table to a national force of such magnitude that H&V parent leaders are now in virtually every board room where systems and services for DHH children from birth to high school graduation are being developed, implemented, and evaluated nationwide.

A Far Cry from Crying

It’s good to go back to the start to remember what we’ve accomplished. Sometimes we are so busy dealing with today’s pressing issues that we forget how many of them seemed unsurmountable when today was last month… or 25 years ago.

Many things we weren’t sure we could aspire to back in the beginning are now a given. For example, because of Minnesota Hands & Voices, parents are the first point of contact after a newborn screening referral in the Minnesota EHDI system. That’s a far cry from just crying.

We have 40 chapters in the United States, five chapters in the start-up process, plus three international chapters. And there is a federal grant that provides major funding for this organization that so many of us built out of sweat equity alone.

The point of looking back is especially useful when we’re looking forward. In fact, “Future Back” is my favorite approach to strategic planning because the starting point for discussion is at least five years out, not the current status quo. Aspirations gain the necessary big-picture, aesthetic distance when the conversation starts with “what do our members need from us five years from now?” instead of “how can we raise enough money to grow?”

Both questions are relevant to the future, but the first one positions us closer to the oracle of visionary thinking.

Coming Full Circle

In the middle of the auditorium full of the Hands & Voices tribe, there will be a circle of new parents who are at the Leadership Conference for the first time in 2021. Reverently surrounding them will be a wider circle of those of us who’ve been here longer… some from the very beginning in 1996.

In turn, every person speaks and/or signs the name of the child they stand there for, or those we hold in our hearts who will always be a part of this. I will say my son Dane’s name. I will nod amen when Cheryl says Jennifer’s name, and Janet says Sara’s. We bring all of them into this circle with a great swelling of joy, humility, pride, gratitude, and hope. There will be tears—plenty of them. The Naming Circle is how we close our conference. It’s an incredibly powerful experience that leaves our hearts full as we depart from this gathering and go back to our homes and all the challenges we face.

This year marks 25 turns around the sun for Hands & Voices. One of the most satisfying aspects of this quarter-century journey has been the unfolding of who we have become as parents. Resilient. Compassionate. Knowledgeable. Protective. Advocative. Proactive. Networked. Agile. Tenacious. We are part of something real that is quantifiably changing the world for the better for our children who are Deaf or Hard of Hearing.

We are Hands & Voices.  ~

Hands & Voices Communicator – Fall 2021