Invisible Disabilities
By Andra Lichtenstein, Board Chair
Some months ago, Board member Betty Webster wrote a moving column about her hearing impairment She talked about her frustration – especially before Zoom – in trying to participate effectively in our Board meetings.
“Before the pandemic, I could understand some people at board meetings, but not others, even though we all sat close together. At a long, rectangular table I could hear only what the person next to me—or next to them—said. If 4-5 more people were on my side of the table, I was pretty much out of luck. I learned to sit across the table from, not next to people I found hard to understand."
An invisible disability
Her thoughts and those of Laura Peck, now ex officio Board member, made me realize it was time to acknowledge my own impairment and share with you. Among other things, Laura said in her newsletter: “I am one of millions with an invisible disability. I cannot hear certain sounds and frequencies. I cannot hear well in a noisy restaurant or my partner’s question from two rooms over or my friend who mumbles over a cup of coffee…Hearing loss is a disability with stigma attached…For many years, I figured it was my problem and worked hard not to inconvenience others. I learned to sit with my back to a wall in restaurants, to arrive early to secure a seat in the front, to apologetically ask others to speak up or repeat themselves, to withdraw from social situations that were too tiring. Little by little, I got better at advocating for what I need.”
My own challenge
I used to be a loud, big talker. A little over 10 years ago, I was diagnosed with thyroid cancer – the good kind, I was reassured by all, the easily cured kind. They were right, it was “easily” cured. I had my thyroid and three parathyroid glands removed. Unfortunately, during surgery, I was in the less than 1% to have my left recurrent laryngeal nerve accidentally severed. It was repaired during surgery, but the left vocal cord became permanently paralyzed and I have only one functioning vocal cord.
After the surgery I couldn’t talk except in gasps and muffled words. I muddled through, and then saw a wonderful speech therapist and a doctor at UCSF’s Voice and Swallowing Center. I had another surgery to inject a gel into my vocal cord to plump it up. The gel would slowly be absorbed by my system and I would probably lose my voice again, but a small percentage of those injected actually have their voice returned to almost normal, no one knows why. This time I was in the lucky percentage. My voice came back and stayed, albeit with some deficits.
I’m not loud anymore
I can’t project my voice, especially in an echoey meeting room or a loud restaurant. I am often hoarse, my voice can be gravelly, and it’s beginning to weaken as I age. I’m not loud anymore and I can’t sing with any range, in the shower or to my grandchildren.
I didn’t believe it when people said I was one of the “softest’ speakers in our meetings. I didn’t want to acknowledge it as an impairment. But so it is. I can’t project and you can’t hear. Zoom has helped. Here’s to having a microphone at Board meetings!
Andra Lichtenstein has been involved in Ashby Village since its founding. She is the founder and principal of Capital Incubator and consults with nonprofit community health centers and aging services organizations to finance their capital projects. She has 40 years of experience in both the nonprofit and for-profit sectors. She was the Planning & Development Director of LifeLong Medical Care for 10 years. She was also the developer and original owner of Saul’s Restaurant & Delicatessen in Berkeley. She is the chair of AV’s Board of Directors.