Raising a DeafBlind Baby
By Arika Okrent
Clarisa Vollmar is not quite one year old but already has a worldwide Facebook following of more than 30,000 fans. They are keeping up with her as she grows, learns, and explores her world as a DeafBlind baby.
That terminology is intentional, not a whim of random capitalization. Her parents, Justin and Rachel Vollmar, have introduced her to the world as DeafBlind, rather than deaf-blind or deaf and blind, in order to explicitly identify her with a community of DeafBlind people who are part of something called the pro-tactile movement. According to anthropologist Terra Edwards, who wrote a dissertation on the DeafBlind community, the pro-tactile movement is not quite an identity movement, but “a philosophy, which begins with the following axiom: Legitimate knowledge can be produced from a tactile perspective without first passing through visuality.”
In his book, Where I Stand: On the Signing Community and My DeafBlind Experience, DeafBlind poet and writer John Lee Clark talks about an unfortunate communication “bubble” that DeafBlind people have had to contend with. They have a “signing to the wall” feeling when they express themselves, not having access to any of the conversational feedback—nods, “uh-huh”s, smiles—that give an interaction vital energy. There are ways to convey those reactions through touch, and Clark describes a pro-tactile approach in terms of “tactile spaces, where DeafBlind people would enjoy equal access to information and participate fully.”
The Vollmars want to create such a space for Clarisa, and they have a special understanding of what such a thing might mean to her. Both parents and all three of Clarisa’s older siblings are Deaf in the “big D” sense of the word, meaning they view their Deafness as a cultural identity, rather than a medical condition. The father, Justin Vollmar, was lucky to have been raised in a Deaf family, and never realized how lucky he was until he once stayed with a hearing family for six weeks. He described the experience this way:
"It drove me crazy. I never felt so frustrated before in my life. I could not understand what was going on at the dinner table. Everyone except for my host brother could not sign. I missed what they said. All of them talked and laughed at each other’s jokes. I kept asking what they were saying. They kept saying, 'wait a minute, I will tell you later.' (They never did). I finally understood that is what many Deaf people grew up with. They get left out at family gatherings and holidays. They are usually behind with family news. They are not sure if their grandfather died of a heart attack or from cancer. They just never know until years later. Some just give up and lose touch."
The Vollmars never wanted their daughter to experience this type of isolation: “When Clarisa was born, my wife Rachel and I immediately agreed that we will modify our family to Clarisa's needs and make sure that she is fully involved with family at all times.”
What is the best way to do that? They are figuring it out as they go along. Most DeafBlind people are born with some level of deafness and slowly lose their vision. They have early exposure to language and a visual concept of the world and social interactions. (Helen Keller also had this; she became DeafBlind as a toddler). A baby born DeafBlind doesn’t have that, and the case of DeafBlind from birth is very rare. The Vollmars have consulted with teachers, specialists, other parents of DeafBlind children, and importantly, DeafBlind pro-tactile advocates. They have made public their journey to find the best way for Clarisa, and it’s a remarkable model of how a family can bring a child into their world by being truly attentive to her view of the world.
For example, in this video, they explain the family rule that everyone must come and greet Clarisa when they come home so she knows they are there. They kiss her, sign “kiss” and “I love you” on her face, and move her own hands to sign “hello” and greet them, too.
They expose her to different textures as much as possible, encouraging her to handle and explore. And they are constantly exposing her to language. Here they explain how they sign with her in natural interactions. As she handles a ball, her father signs to her “ball” and “yes, daddy give ball” with his hands and then with her own hands.
Clarisa’s story is inspiring, but not in the way one might think. There is no typical narrative here of her “overcoming barriers” or of others “breaking through” to her. She is not achieving “despite the odds” or “by working 10 times harder.” What’s inspiring is the way her family has adjusted to her unique perspective, in order to give her the most natural and effortless upbringing possible.
Follow Clarisa's story by becoming a fan of her Facebook page.
Videos used with permission of Justin Vollmar.