July 22, 2022 – An unusual conspiracy theory started circulating on TikTok in 2020 that had nothing to do with the growing COVID-19 pandemic. In video after video, users claimed that the 20th century disability activist Helen Keller was a fraud who lied about her disabilities, was a Nazi, or wasn’t even a real person at all.
The Helen Keller denial meme continued to spread in 2021, sparking discussions about disability denial and Keller’s legacy. Keller was a real person – and she was also a much more complicated figure than the version of her life many Americans learn about in school.
Deaf-blindness is also much more complex than many people commenting on social media may realize. Being deaf-blind does not necessarily mean someone is limited in what language skills they can acquire. It also does not mean that the person is unable to communicate, or do things like attend and graduate college. The real challenge is getting children who are deaf-blind the unique support they need to learn and thrive.
“It’s very disappointing to think that a label, the deaf-blind label, would carry with it thoughts that somebody couldn’t do this, or couldn’t do that. It’s just not true,” says Susan M. Bruce, PhD, a professor at Boston College who researches communication development in children with disabilities, including those who are deaf-blind.
“A big part of what Helen Keller did was try to change the way people thought about individuals who were blind and deaf-blind,” she says. That’s part of what makes the denial memes and the ableist attitudes that enable them so upsetting. “It’s really hurtful and insulting on so many levels.”
“To be honest, I don’t care much about those comments,” Lisa van der Mark, a PhD student researching international tactile communication at Leiden University in the Netherlands, says in an email. Van der Mark, who is deaf-blind, says she only learned about Keller when attending Gallaudet University in Washington, DC, and she never really felt a connection with her.
“I am on my own journey, and I am connecting with others who are alive today and who I can actually connect with.”
Deaf-blind people like Keller have lost hearing and vision. The condition is rare; between Dec. 2, 2019, and Dec. 1, 2020, 11,407 children in the United States were eligible to receive deaf-blind project services, according to an analysis by the National Center on Deaf-Blindness. Deaf-blindness has many possible causes, including a genetic disorder called CHARGE syndrome, Usher syndrome (which affects hearing and vision), hydrocephaly (a buildup of fluid in the brain), microcephaly (a birth defect that causes an abnormally small head), severe head injury, and meningitis.
Deaf-blindness broadly falls into two categories – congenital and acquired, says Jesper Dammeyer, PhD, a psychologist at the University of Copenhagen in Denmark who researches sensory loss, language, and thinking skills. Keller, for instance, famously lost her sight and hearing after an infection when she was not quite 2 years old. Other people are born with limited or no sight or hearing, meaning the condition is congenital.
Within those two groups, people who are deaf-blind are varied.
“The population is diverse in every way,” says Sam Morgan, EdD, who directs the National Center on Deaf-Blindness in Sands Point, NY. People who are deaf-blind can be partially deaf and/or partially blind and can have progressive hearing and/or vision loss. People who are deaf-blind also vary widely in their thinking abilities, physical, health, and thinking disabilities. About 85% of children who are considered deaf-blind have other disabilities, he says.
Language and Thinking Skills
Much of the Keller skepticism revolves around her impressive literary feats: She published 12 books in her lifetime. The accusation that she faked her disability cropped up several times when she was alive, too. As with skeptics then, social media users today assume that because Keller could not see or hear, she could never have such advanced language skills.
For very young children, language skills are crucial for learning how to think and figure things out. A child’s development mentally, academically, and socially is all very sensitive to language delay, Dammeyer says. And when it comes to exposing children to language, “the earlier the better,” Morgan says. “There’s a clear connection between language acquisition and all kinds of cognitive skills.”
But a language does not have to be spoken to have an important impact. Much of the research on the connection between thinking skills and language comes from children who are congenitally deaf, Dammeyer notes. Young deaf children who engage with people with either sign or spoken language – via a hearing aid or cochlear implant – will likely develop typically, he says.
For children who have hearing and vision loss later in life, having access to sign or spoken language during the early years of life can make it easier for them to develop language and other thinking skills later, Dammeyer says.
And yet children who are congenitally deaf-blind can learn to communicate very well with the right support.
Language development is fairly similar for everyone, Bruce says. In the beginning, babies are all reflexes, reacting to the world around them. But fairly quickly, they start tugging on a parent’s clothing or batting at something on the side of their crib – actions with the intent of impacting an object. This behavior is a step toward intentional communication.
“Once we want to have an impact on another person and have a message in mind, something we want to express to another, then it becomes intentional communication, Bruce says.
As communication skills progress, young people become able to use and interpret symbols — things like words and letters to stand in for objects and actions. For children who are deaf-blind, grasping symbolism is a huge step.
“With this population, my experience has been that once they understand symbols, their language and development just takes off,” she says.
Keller’s accomplishments were extraordinary. How she did what she did is still somewhat unclear. Dammeyer says she may have acquired some language in those crucial first 2 years of life before her sudden sensory loss, laying the groundwork for her brain to develop more advanced language and other skills later. Still, it is hard to know exactly what impact that early language exposure had on Keller’s later language development.
Keller sets a somewhat impossible standard, and she had many privileges other children who are deaf-blind do not enjoy. For example, her family was economically privileged, and she had nearly 2 years of typical development before she lost her hearing and sight, Bruce notes.
Yet, “when the proper supports and intervention are in place, individuals who are deaf-blind can accomplish what sighted and hearing people can,” Morgan says. Unfortunately, many children who are deaf-blind lack access to those supports and interventions. Some end up in facilities for children with intellectual disabilities, even if they do not have an intellectual disability at all, Janssen says.
If a child tests for vision and hearing loss, doctors can refer patients and families to a State Deaf-Blind Project in their state. They can also encourage families to learn about ways to communicate using touch, like Pro-Tactile. Such support should start as early as possible to help children develop thinking skills, Morgan says.
“With Pro-Tactile, everyone is equal: No matter how much you see or hear, you do Pro-Tactile,” van der Mark says. “It’s really nice to share your way of communication with anyone, instead of adjusting to everyone else’s communication.”
Providers who find themselves working with children who are deaf-blind should also learn to use touch cues to let the patient know they are about to be touched for an exam, Bruce says. Touch cues are individualized, so the caregiver can share those with the doctor, and doctors should engage directly with the person with disabilities, not just with the interpreter, she says.
“Being deaf-blind is a very individual experience,” van der Mark says. “There is a great variation in how people see/hear, how they navigate and interact, what their rights are per country, and how their environment supports or empowers these people.”