Wendi Beason walks a tightrope in the best of times. Her 5-year-old daughter Hannah is hearing impaired and Sheldon, her 10-year-old son, is on the autism spectrum. One is medically complex, while the other behaviorally so. In the battle against COVID-19, both of them have an added complexity: masks.
Masks that protect against COVID-19 present a hurdle to deaf and hearing-impaired people — as well as those dependent on facial cues — when it comes to understanding and communicating with others.
Hannah is adept with American Sign Language — already outpacing her mother’s skills. “She can’t speak, but she can sign better than some of the deaf kids,” Beason said. But ASL also depends on seeing facial expressions which are hidden behind masks.
Once the pandemic set in, the National Association of the Deaf published a series of articles with advice about the best way of handling the mask issue. The organization suggested clear masks as a workaround, and they are now in high demand. However they’re not a panacea.
Sherri Collins, Arizona Commission for the Deaf and the Hard of Hearing’s executive director, said that her organization distributed 30,000 clear masks in one week.
The commission is giving masks freely to those who request them, but they can’t fill all the requests immediately. Collins said it takes about four to six weeks to get in an order, and they’re expecting their next shipment in mid- to late August.
Collins said the masks the commission is distributing are high-quality, but she’s seen other clear masks that fog up quickly rendering them useless. Some masks are made with only a clear square around the mouth which still covers most of the face, she said. And the clear masks currently on the market are only made for adults. Children who are deaf and hard of hearing can’t use them to talk to one another.
Clear masks are still helpful, but they are in short supply, and some of them are simply too expensive, said Gina Griffiths, director of programs for Opportunity Tree, the caregiving agency for Gesher Disability Resource’s Shalom House and Keshet House, as well as other group homes for people with disabilities. With limited funding, the programs have to be attentive to the bottom line.
“It’s been a struggle, for sure,” Griffiths said.
And hearing loss isn’t the only problem when it comes to communicating with a mask.
Griffiths said that she and her staff were surprised when some of their community members with no hearing loss told them they couldn’t understand people wearing masks. The whole face can be important in communicating, especially for those with autism.
Although Sheldon doesn’t have hearing loss, his understanding too is hindered by masks. He gets very nervous wearing the mask, and is confused without the help of seeing facial expressions.
Additionally, with his sensory issues, Beason is concerned about how her son will be able to spend an entire day at school in a mask without a break. Sheldon would definitely need breaks, his mother said.
“Gesher’s inclusion services are for these circumstances, to take all abilities into consideration,” Jill Wilson, director of education and programs at Gesher Disability Resources wrote in an email. “As a teacher I have concerns about going back into the classroom wearing a mask since the full face shows both emotional and social expressions that everyone, not just children need.”
Jennifer Sosnow, whose 15-year-old daughter Abby has moderate hearing loss, ordered four clear masks when she was made aware of them. Abby uses hearing aids in combination with lip reading. However, in Abby’s case, the masks still present a problem since they don’t fit her face. “They’re OK,” Sosnow said, “but I don’t know that it’s going to protect that well since they’re open on the sides.”
Still, Sosnow said the clear masks are better than nothing, and they’ll be especially necessary when she returns to school.
Hannah is scheduled to start kindergarten at Phoenix Day School for the Deaf where teachers will be wearing clear masks. Born with severe Micrognathia, a condition that left her with a very small lower jaw, she is also missing many of her teeth and the front of her tongue — its base stuck behind a rare membrane blocking her entire oral airway. She is equipped with tracheostomy and PEG tubes.
All make speaking challenging, not to mention the difficulty of fitting a mask properly to her face. Hannah’s teachers will work with her on turning her vocalizations into articulate speech that people outside her family will understand.
However, with masks, clear or not, that instruction becomes more difficult. She needs to see her teachers’ mouths move clearly in order to understand how to form the words herself. She would have an easier time with instruction over Zoom, because there are no visual obstacles.
Beason said that as long as COVID-19 is a threat, she would prefer that Hannah stay at home due to her compromised immune system. But with Arizona’s governor still insisting that in-person education begin August 17, she now worries that Hannah will lose her place at school if she keeps her daughter home.
Sosnow is happy that her daughter’s school, The United School in Scottsdale that serves children affected by Autism Spectrum Disorder, is keeping its classes online at least until September. To go back in person or not is now one more anxiety-inducing choice.
“The capability to be online and not wear a mask makes a big difference,” wrote Wilson regarding schools.
People whose experience with masks has been somewhat tricky, don’t discount the need for them. Protection from COVID-19 is paramount, but Griffiths is sensitive that masks are difficult to get and to wear for many of the members, and said it is something that needs to be part of their daily lives. “Folks with disability should have things that are culturally normative and important, too.” JN