Macrocosm: Does Public Health Leave Deaf People Out of the Conversation?

Sladic

A 1-year-old child sits in a chair, awaiting a meal of Cheerios and applesauce. When mom brings it over, she points to the cereal, then moves a finger in front of her body, inching forward like a caterpillar. The sign indicates cereal, and the baby starts to make the connection. Mom can speak, and her child can't, which isn't uncommon - 90% of deaf children are born to hearing parents, says Howard Rosenblum, CEO of the National Association of the Deaf.

Halfway through pointing to the applesauce, another person enters the kitchen and begins to talk to mom about lunch. Mom starts talking to the other person without signing, and the baby is left to watch a world of communication that they're severed from. When the other person mouths something at the baby without signing and walks away, the child is even more confused and even more alone.

These two phenomena, language deprivation and communication neglect, don't only affect the child at that moment. According to a recent study in the American Journal of Preventive Medicine, a lack of childhood communication exacerbates the risk for chronic diseases and psychological disorders in deaf adults.

The study surveys 1,500 adults who were born deaf/hard of hearing or became deaf in both ears before the age of 13. The patients self-report about their early lives and the level of communication they received at home. The survey included questions that gauged how much the participant understood their caregiver, how much the caregiver understood them, and how often the participant felt ignored or left out by the family.

This self-reporting was a challenge, says Dr. Poorna Kushalnagar, one of the study's primary authors. Self-reporting about early life experiences can limit scientists' ability to determine causality for adverse childhood communication experiences (ACCEs), a subset of adverse childhood experiences (ACEs).

How do we define adverse childhood experiences?

So what makes a childhood experience adverse? Is this abuse? Is it neglect? Is it reportable to Child Protective Services?

ACEs, as understood by the Center for Disease Control, are traumatic events that occur in childhood, such as witnessing violence in the home or community or experiencing abuse or neglect. The CDC has already done many studies to indicate that ACEs are linked to chronic health problems, mental illness, substance misuse, higher risks of injury and STIs, and a difficult time forming healthy and stable relationships. The CDC does not break ACEs into subsets, but Kushalnagar finds that deaf children experience different adverse experiences than hearing children.

ACCEs apply strictly to communication and occur when a child's ability to communicate ideas is neglected. Direct ACCEs, such as not learning or teaching sign to a deaf child, can have drastic effects on their future. Rosenblum asserts that if the initial language development stage is missed for a deaf child, it's very rare for that child ever to become fluent in any language. 

But a previously overlooked indirect ACCE can also occur in the form of communication neglect. This happens, as Kushalnagar puts it, "at the dinner table or during car rides."

"During one-on-one conversations, the parent may be looking directly at the deaf child to make sure they can understand them," says Kushalnagar. "However, when the conversation is not solely directed towards the deaf child, as in group or informal conversations, parents may not put as much conscious effort in making sure their deaf child can understand."

And this indirect neglect can have severe consequences. After correcting for parental hearing status and known prior correlations of medical conditions, the study determined that poor direct child-caregiver communication significantly increased the risk of diabetes, hypertension, and heart disease. Absolute risk estimates show that 1 person in 13 who understood little to none of what their caregiver said would be affected by diabetes, 1 in 8 by hypertension, and 1 in 15 by heart disease. 

Indirect family communication neglect increased risks for lung diseases and depression/anxiety disorders. Among people who reported exclusion from indirect family communication (that conversation around the dinner table or in the car), 1 in 13 would experience a depression/anxiety disorder, and 1 in 25 would experience lung disease.

What happens next?

This information was staggering for the researchers but not surprising. Kushalnagar noticed throughout her progression in deaf health studies that deaf people tended to be lumped together and compared against the general population. She knew that this approach obscured the differences present in the deaf/HOH community and overlooked the subgroups who are at serious risk of chronic health problems. Now that her research team has this information, they're more prepared to go before policy-makers at the city, state, and federal level to mandate screenings for ACCEs and provide funding to support family intervention services.

The team also plans to apply for funding to implement and disseminate an evidence-based intervention to prevent ACCEs from occurring at all, which would significantly decrease the risk of chronic disease development in deaf adults.

"Stop trying to figure out how to teach deaf children without asking deaf people!" says Rosenblum. "We have a maxim in the disability community: 'Nothing about us without us.' So include us at the table when deciding policies and approaches with respect to deaf education."

Research like this provides hope, but the following steps are destigmatization and action - both monumental and daunting. However, with this research behind them, organizations like the Center for Deaf Health Equity and the National Association for the Deaf have more evidence to encourage profound policy change for deaf children.

With the COVID-19 pandemic keeping children in the house longer and preventing access to in-person education, parents are becoming more and more involved in the educational process. If hearing parents remain unwilling to sign with deaf children, this time of isolation could have lasting physical and psychological effects. But with proper policy and resources, this could be a boon to deaf children as they get more time refining their language skills with their parents.