July 22, 2022 — An unusual conspiracy theory started circulating on TikTok in 2020 that had nothing to do with the growing COVID-19 pandemic. Video after video, users claimed that the 20e Disability activist of the century, Helen Keller, was a fraud who lied about her disabilities, was a Nazi, or wasn’t even a real person at all.
Helen Keller’s 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 far more complicated figure than the version of her life that many Americans learn in school.
Deafblindness is also much more complex than many people commenting on social media think. Being deafblind does not necessarily mean that a person is limited in the language skills they can acquire. It also does not mean that the person is unable to communicate or do things like attend and graduate from college. The real challenge is to provide deafblind children with the unique support they need to learn and thrive.
“It’s very disappointing to think that a label, the deafblind label, would carry with it thoughts that somebody couldn’t do this, or couldn’t do that. That’s just not true,” says Susan M. Bruce, PhD, a Boston College professor who studies communication development in children with disabilities, including those who are deafblind.
“A lot of what Helen Keller did was try to change the way people thought about blind and deafblind people,” she says. That’s part of what makes denial memes and ableist attitudes so upsetting. “It’s really hurtful and insulting on so many levels.”
“To be honest, I don’t care much about these comments,” Lisa van der Mark, a doctoral student in international tactile communication at Leiden University in the Netherlands, said in an email. Van der Mark, who is deafblind, says she only heard of Keller while attending Gallaudet University in Washington, DC, and never really felt a connection with her.
“I’m on my own journey, and connecting with others who are alive today who I can actually connect with.”
Deafblind diversity
Deafblind people like Keller lost their 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 deafblind project services, according to an analysis by the National Center on Deaf-Blindness. Deafblindness has many possible causes, including a genetic condition called CHARGE syndrome, Usher syndrome (which affects hearing and vision), hydrocephalus (a buildup of fluid in the brain), microcephaly (an abnormality congenital disease that causes an abnormally small head), severe head trauma and meningitis.
Deafblindness falls into two categories – congenital and acquired, says Jesper Dammeyer, PhD, a psychologist at the University of Copenhagen in Denmark who studies sensory loss, language and thinking skills. Keller, for example, 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, which means the condition is congenital.
Within these two groups, deafblind people 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. Deafblind people may be partially deaf and/or partially blind and may have progressive hearing and/or visual loss. Deafblind people also vary greatly in their thinking, physical, health, and thinking abilities. About 85% of children considered deafblind have other disabilities, he says.
Language and thinking skills
Much of Keller’s skepticism revolves around her impressive literary achievements: she published 12 books in her lifetime. The accusation that she faked her disability also came up several times during her lifetime. As with skeptics then, social media users today assume that because Keller couldn’t see or hear, she could never have such advanced language skills.
For very young children, language skills are crucial for learning to think and understand things. A child’s mental, academic and social development is very sensitive to language delay, says Dammeyer. And when it comes to exposing children to language, “the sooner the better,” says Morgan. “There is a clear link between language acquisition and all kinds of cognitive skills.”
But a language doesn’t have to be spoken to have a big impact. Much of the research on the link between thinking skills and language comes from congenitally deaf children, Dammeyer notes. Young deaf children who interact with people who speak either signs or a spoken language — via a hearing aid or a cochlear implant — will likely develop in typical ways, he says.
For children who experience hearing and visual loss later in life, access to sign language or spoken language during the first years of life can help them develop language and other more thinking skills. late, said Dammeyer.
And yet, children born deafblind can learn to communicate very well with the right support.
Language development is pretty similar for everyone, says Bruce. At first, babies are all reflexes, reacting to the world around them. But soon enough, they start tugging at a parent’s clothes or hitting something on the side of their crib – actions with the intention of hitting an object. This behavior is a step towards intentional communication.
“Once we want to impact another person and have a message in mind, something that we want to express to another, then that becomes intentional communication,” says Bruce.
As communication skills progress, young people become able to use and interpret symbols – things like words and letters to replace objects and actions. For deafblind children, grasping the symbolism is a huge step.
“With this population, my experience has been that once they understand the symbols, their language and development takes off,” she says.
Beyond Keller
Keller’s accomplishments were extraordinary. How she did what she did is still somewhat unclear. Dammeyer says she may have picked up some language in those crucial first 2 years of life before her sudden sensory loss, laying the foundation for her brain to develop more advanced language and other skills later. Yet it is difficult to know exactly what impact this early exposure to language had on Keller’s later language development.
Keller sets a somewhat impossible standard, and she had many privileges that other deafblind children 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 appropriate supports and interventions are in place, deafblind people can accomplish what sighted and hearing people can do,” says Morgan. Unfortunately, many deafblind children do not have access to these supports and interventions. Some end up in institutions for mentally handicapped children, even if they don’t have intellectual disabilities at all, says Janssen.
If a child tests for vision and hearing loss, doctors can refer patients and families to a state deafblind project in their state. They can also encourage families to learn about ways to communicate using touch, such as 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 what you see or hear, you are doing Pro-Tactile”, says van der Mark. “It’s really nice to share your way of communicating with anyone, instead of adapting to everyone’s communication.”
Providers who work with deafblind children should also learn to use tactile cues to let the patient know they are about to be touched for an exam, Bruce says. Tactile cues are individualized, so the caregiver can share them with the doctor, and doctors need to engage directly with the disabled person, not just the interpreter, she says.
“Being deafblind is a very individual experience,” says van der Mark. “There is great variation in how people see/hear, how they navigate and interact, what their rights are by country, and how their environment supports or empowers these people.”
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