told by the people living them.
“Distance is Existance!” some kids in our Squirrel Hill neighborhood wrote in chalk on our sidewalk. Despite the spelling error, their message is clear, maybe even prophetic. After all, Dr. Anthony Fauci suggests that COVID-19 may end the era of the handshake. Others predict that the world of touch outside intimate loved ones is over.
Should this come to pass, I will adapt. But as someone totally blind for the past 50 years and moderately deaf, I am already grieving the hugs and handshake restrictions. Disability has fed my appreciation of touch.
Touch gives me vital information. It’s not a perfect substitute for sight, but it allows me to function independently. Though identifying canned or boxed goods is tough, I can recognize most foods by touch. I cook, clean, wash our car, plant and weed with the help of this sense.
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Touch grounds me in location. Around my house, I always walk without shoes. I treasure the information my feet give: throw rugs, hardwood or tile floors. As I walk with my cane or guide dog, Dave, I feel the differentiation of rough and smooth sidewalk, ups, downs and the grass shoreline.
Guide dogs particularly communicate through touch. With my hand on Dave’s harness, I not only detect lefts and rights, I know if a dog is ahead — he pulls harder. If the harness dips, Dave is committing the sniffing crime.
Of course, even if the pandemic alters touch and the handshake disappears, I will still communicate with objects, much the same way. But lose the handshake? To most people, it’s a greeting, not terribly intimate. Yet for me, the handshake is much more. If people say “Hello,” I can’t always judge where they are. My hearing loss skews directionality. I may not face the people accurately. Handshakes tell me something about size, weight, age, strength, maybe some personality. They ensure that someone is speaking to me, not into a cell phone.
And the hug? To many, like my kids and husband, full-bodied hugs are a curse except with loved ones. But to me, who saw for 26 years, the hug is the medium for information about appearance, height, weight, hair style and more. Kisses to the cheek show me surprise mustaches and facial hair on people, mostly men. (Two cautions: People who are born blind may not be as interested in appearance as I am because they have no visual memory, no reference. And most blind people love touch, but hate people asking them to touch their faces.)
Touch is key to parenting and grandparenting, for feeding, dressing and transporting. Because I can’t see, I claim hugging and holding rights. My adult children still tolerate this, and my grandkids embrace it, catapulting into me, leaping into my lap and crawling onto my shoulders. For a day or two after I visit with them, the kids give our daughter and son-in-law more contact, leaning against them, or just hovering closer. This soon ends, because they can all see each other and don’t need the entanglement I crave.
But when they visit next week, will we need to be masked? Six feet apart? “Impossible!” my inside and all my outsides scream.
Then, I have one of those painful “up short” moments and remember that I’m not the only one grappling with such change, and it may be even more profound for others. As a member of the Deaf-Blind community, I wonder, for the first time, how others with the disability are faring. As Baby Boomers in America age, the Deaf-Blind population is predicted to grow anywhere from 3.5 million to 14 million by 2030, according to a 2007 journal article on dual sensory loss.
Like me, many who are part of the Deaf-Blind community, have enough acuity from hearing aids or cochlear implants to determine traffic flow, so they can cross streets with guide dogs or canes safely. Others, however, are profoundly deaf and are trained to seek assistance. But will most pedestrians be too scared of COVID-19 to offer help?
Because my hearing problems began when I was 28, I have clear speech. But many others were severely deaf at birth and rely on touch — tactile sign language to communicate. Because very few members of the public know tactile sign, many with this dual sensory loss use an index finger to print messages in capital letters on the palm. But these practices fly in the face of today’s safety recommendations — as do many signs in ASL [American Sign Language]. The signs for “Mom” and “Dad” require signers to touch their faces.
How well those with deaf-blindness manage also depends on technological skills. I’ve been fortunate to have computer and cell phone training for Zoom and FaceTime visits. But such training opportunities are uneven through the population.
So reduced independent mobility? Reduced personal and digital communication? What about support for the endless daily tasks? I have a retired, sighted and hearing husband available. What happens to others without family? State agencies like Deaf-Blind Living Well Services of Pennsylvania provide free support. The personnel can communicate in sign and help with mail, shopping or other tasks. But availability is problematic. Most employees are part time, and with the pandemic, they may not be considered “essential.” And the organization’s funding runs out on Sept. 30.
Suddenly, my present and potential deprivations seem minor. Others with deaf-blindness face issues of safety and independence. Their whole way of life could be threatened. COVID-19 has dealt a blow to all our lives. But with the 30th anniversary of the Americans with Disabilities Act just behind us, contemplate the new challenges to this community. Consider making a donation to a service agency. Become a paid support provider, or simply check in on someone with deaf-blindness.
Sally Hobart Alexander is the author of many essays and eight books. Six books were Junior Library Guild selections, and one, “Taking Hold: My Journey into Blindness” won a Christopher Medal. Having taught in Chatham’s MFA program, she now leads a writing group, accompanied by her guide dog (Instagram: @davetheguidedog). If you want to send a message to Sally, email email@example.com.
See more stories by people with disabilities in our special project commemorating the 30th anniversary of the Americans with Disabilities Act. Visit adapittsburgh.com.
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