Language is a civil right but communication is a personal responsibility.
On December 31st, 1979, my father called me at 11:15 PM in California, 2:15 AM Dad’s time in Cleveland. Dad had lost his lower jaw and most of his Larynx to cancer and over-radiation. His voice was a forced thin whisper. He spoke slowly and I listened carefully, asking him to repeat, when I didn’t understand, rather than pretending I did. Four years before, I decided that I would never again let my fear block any communication with another. That lead to my willingness to say, “I’m sorry, I didn’t understand. Would you please repeat that?” Specifically, I began to practice that simple act of patience while speaking with a colleague who had severe cerebral palsy and who’s speech was difficult for me to understand.
That conversation with my father lasted over an hour and spanned the turning of the decade. It was one of the sweetest, most poignant conversations that my father and I ever shared. We both recognized that his days were numbered. Dad lived in Cleveland, 2500 miles away.
Around that same time, I had begun working with one of the giants of speech prosthesis systems, John Eulenberg. John had told me about his own father’s death and how at the end, their communication was reduced to hand squeezes. One squeeze meant “Are you awake?” One squeeze in return signaled “Yes.” Two squeezes meant “I love you.”
On May 23rd, 1980, I was scheduled to M C an international conference on the state-of-the-art of VOCA’s, Voice Output Communication Aids. The gathering was important because it signified a great leap forward in human communication, thanks to the days emerging assistive technology.
I was working for Telesensory Systems Inc., a rehabilitation engineering company that had just demonstrated a VOCA with synthetic speech that was as easily understandable as human speech. That breakthrough and ones that followed set events cascading which would ultimately break the chains of isolation for hundreds of thousands of people whose voices were not understandable due to their disabilities. I was going to be the moderator for the VOCA Symposium, but it was not to be. Instead, I sat at my father’s bedside within University Hospital in Cleveland as death approached.
Dad couldn’t whisper due to the oxygen mist flowing into his tracheotomy opening. The last exchanges we had were the simplest and most profound.
Using John Eulenberg’s terribly simple lexicon, I asked with a hand squeeze if dad was conscious, and then we both signaled with double squeezes. My father died in my arms on that Friday afternoon, while in Berkeley the conference that had focused so eloquently on the future of human communication was ending.
Two years later I returned to Cleveland as director of rehabilitation for the Cleveland Sight Center. The Sight Center had been one of the evaluation sites for the Telesensory reading machine for people with visual disabilities which I was tasked to evaluate. The site-coordinator from the Cleveland Sight Center was Jean Babinchak, a vivacious communications instructor who was blind. At the end of the evaluation, we had hosted all of the site-coordinators for a seminar at company headquarters in Palo Alto, California.
I remember very well a pool party where we relaxed over drinks and dinner in the gracious backyard of one of our teachers. Everyone was dressed in fashionable summer chic as Jean laughed wearing a bright yellow T-Shirt which read…
“I Survived The Cleveland Blizzard of 1977”. Her T-Shirt seemed like the perfect statement for a woman from Cleveland, unpretentious and fun.
When I became rehab director, Jean was one of my subordinates and a friend. As I got my bearings within the Sight Center, Jean advised me about who to trust and who to avoid within the staff of over one hundred employees. But most importantly, she worked with me as I began to develop a new program concept, a computer access center.
Jean would become the STORER Computer Access Center’s first employee, and her enthusiasm and elan was magnetic and infectious for everyone as she began to create a model that would be a bellweather for blindness rehabilitation agencies.
About a year after the STORER Center got underway, Jean began to have seizures and it was soon discovered that a brain tumor was growing within her frontal lobe. Jean had gone blind very quickly as a teenager due to unknown causes, but now, the slowly growing tumor which has stolen her sight two decades before, was taking a new toll. A brain surgeon carefully removed part of the tumor which he could reach. The surgery was performed, and she recovered at Cleveland’s University Hospital, within walking distance of the Sight Center. I was able to visit her. She rebounded, although the surgeon had severed the nerve bundle that carried her sense of smell, a serious loss for anyone especially for one who is blind and who relies on the sense of smell for so many functional life tasks.
A few days after her surgery, I remember her wearing a fashionable turban as she laughed in the face of her loss as if to say, “Your glove never touched me.” Jean seemed unsinkable and her joy made everyone who was concerned about her relax, as if her job was to make us feel better.
Jean returned to work after a few weeks, but I was shocked to see her without the smile and bright zest for living which had been her trademark. She had lost much of her previous drive and energy.
About a year after her return to work part time, which was all she could manage, Jean again began to endure seizures. A new medical technology, the MRI machine gave the surgeon a never-before-seen view of her brain. The tumor, which had been hidden within the folds of the mysterious brain, had grown, and was now entangling her brain stem. A second surgery was scheduled to address this frightening new development.
The night before her surgery I had worked late attending an evening meeting and was able to drop by the hospital on my way home. I happened to be in her room when the surgical team came in for her briefing. The surgeon described how, based on the results of the MRI study, he could see how the tumor was forcing itself in an S-curve around the base of her brain. It was going to be a difficult and delicate operation. He would use a laser and although he spoke with a confidence that seems to be the surgeon’s brand, and although the surgery was absolutely required, I could tell that he was saying that he had never before conducted such a surgery and that the results could not be foretold.
When he left it was getting late and I had an hour cab ride home so I told Jean that I would see her in a few days and that she was in good hands. She gave my hand a long squeeze. I could tell she was afraid. Choked with emotions she was unable to speak.
The following day was the surgery, I went to the hospital the day after and told the nurses that I was her brother, in order to get into the ICU. Jean’s shaved head had tubes extending through the skin at the base of her skull, and her mouth was opened with a stainless steel ventilator that filled her lungs with each breath. I was horrified with the starkness of the scene.
Covered by a sheet, Jean laid on her side with her back toward me. A nurse had followed me into her room and told me that Jean still needed the breathing machine but that she could hear me. My low vision gave me enough information to see that a maze of wires and tubes were attached to her head and body. Jean’s hand reached for me when she heard my voice and the nurse, realizing my limited vision, put my hand on Jean’s, then she left the room.
A steady sound of the ventilator and the regular beeping of several machines created a sound tableau unlike anything I had ever heard. I stood aghast as Jean repeatedly hit her thigh with her right hand. My hand rested on her hand although her hand continuously hit her thigh. Then with a shock I realized that Jean was fingerspelling, using the manual alphabet which is used to communicate with individuals who cannot hear. I said to her “Jean, I’m sorry, now I see that you are fingerspelling. Tell me what you want to say.” Her hands stopped and formed a letter. It took me quite a while, feeling the shape of her fingers, to interpret the letter she was forming. “T!”, I said excitedly.
Then, Jean closed her fist and nodded it saying “Yes!”. Then, ever so slowly, she formed each letter shape which I painstakingly interpreted. When I got the letter right, she fist-nodded YES. When I guessed the wrong letter, she slapped her thigh as saying “No.” As the chorus of hospital sounds spell into an audible blur, I focused with all my attention on what she was desperately communicating.
Finally, I put the fifteen letters together and I cried out to her “Teach Them To Sign!” I repeated it again – TEACH THEM TO SIGN! With that, she nodded “Yes!” a final time and then her hand came to rest on her leg. This simple sentence had required great patience from Jean and me, and of course it also required that we both know how to fingerspell. We were both emotionally and physically spent. I realized that she was telling me to teach her nurses, her doctors, and her family to fingerspell so she could communicate her most basic needs. I could see what I needed to do, and I shared my plan with her. She nodded her fist in agreement a final time. The nurse came in and quietly announced it was time for me to go. I said goodbye and left.
I went back to my office and called the Cleveland Hearing and Speech Center, which had index cards that contained the manual alphabet. On my way home, the coworker who was driving, stopped at the Center and I picked up two dozen of the manual alphabet cards. Then we went to the hospital, and we went to the intensive care unit where I held my first little class on fingerspelling for Jean’s nursing staff. I returned the next day and taught the system to the morning staff and her doctors, as well and left enough cards for the nurses whom I might have missed. That afternoon her mother and her husband came to the Sight Center, and I also taught them how to read Jean’s fingerspelling.
There are not many people with visual disabilities who know any sign language of which fingerspelling is a part. In Berkeley, California, at the Center for Independent Living, ten years before, I had worked to master enough sign language in an after-work class for people with visual disabilities, in order to communicate with our deaf staff and clients. I was managing a new deaf services program as part of our expanding services for people with various disabilities.
When Jean Babinchak began to work as a communications instructor at the Cleveland Sight Center, she learned and mastered fingerspelling as a bridge to her blind clients who were also deaf.
Something had told me to fabricate the story about being her brother in order to be granted a visit in the ICU when she was so desperately in need of communication.
Jean never returned to work. While she was in the general hospital unit and the ventilator had been removed, I learned with horror that she could not speak. As I sat with her and she laboriously fingerspelled her thoughts, I struggled to imagine how she could more effectively communicate to all of those she needed to talk with in her hearing world.
Bruce Baker, a friend of mine, worked on the cutting edge of voice output communication aids. I explained Jean’s dire need and her inability to any longer use a computer keyboard post surgery. But – Jean Babinchak’s communication background, again, came to the rescue. She knew morse code! So also did Bruce. He invented an interface to a voice output communication device which could speak with a mechanical sounding speech synthesizer.
After an afternoon of training, Jean had a new voice.
After a few months of rehab she was again able to speak in a soft whisper that reminded me of my dad’s own voice in the years before he passed.
A coworker and I visited her at her home where she sat in her wheelchair and tried to put on the best face possible concerning her difficult life’s circumstances.
Jean’s medical expenses were staggering. I became part of a fundraising concert that we staged in her honor during a blizzard on Valentine’s Day 1987.
Jean was transported by local paramedics, and she waited backstage on a gurney where I greeted her before I went on. After we had all performed, Jean was brought on stage in a wheelchair and was handed a check for 17,000 dollars raised by the community she had so long served. The microphone was held in front of her and choking back tears, she whispered “Thank you!”. She received a prolonged standing ovation from the audience that had shown up to express their support. Jean died 10 days later.
I might have had a yellow T-Shirt made which could have read “I Survived The Blizzard of 1987”. I know that Jean would have wanted one and would have smiled remembering how hard we had all worked to make it to her big event.
Jean was one of a kind.
As a curious, sighted middle school student, Jean had mastered morse code.
When Jean suddenly lost her sight, she mastered Braille.
Jean conquered fingerspelling in order to expand her reach as a teacher. Her native drive to communicate gave her an eagerness to learn how to use computers as well. Never before have we had so many channels of communication to those near and far.
All of our technology can open doors of communication. May we use them all to strengthen the human family and find those for whom communication, in whatever form, can be a lifeline.