I was in Batman’s bedroom when I made two discoveries. First, I discovered that I was a social media chaplain. Second, I discovered the challenge of clear conversation in a room of communicators.
The room was in the ballroom of Hotel 71, a space used in one of the Batman movies. I was attending SOBcon, a small conference for people who were influencers in the early days of social media. Not necessarily well-known names, but people exploring the best ways to use social media as real people.
In that process I was unpacking my own identity in terms of ministry, particularly in the on-line world. How could I best describe my role in relation to the people around me? I was working hard to talk about faith in language and concepts that were as unchurchy, as ordinary language, as possible. I wanted to be a presence for conversation, but was aware of how hard some people preached and pushed. I understood that the most remarkable part of social media wasn’t the media piece. It was the social piece. While it was true that everyone could be their own publisher now, the media piece, we could also talk with each other in public spaces about those publications.
And so, that evening in Batman’s bedroom, I announced for the first time that I was a social media chaplain. I wasn’t going to be a preacher online. I wasn’t necessarily a pastor, since that wasn’t a term that everyone understood positively. For some, it was the same as a preacher. For others it was an unknown.
But most people have some picture of a chaplain. Whether as a military chaplain, or a police chaplain, or a hospital chaplain, there was an image of someone who was present in difficult times attempting to be helpful. People smiled and clapped a bit and went back to their conversations.
After a bit, I made my second discovery.
I ended up talking with Glenda Watson Hyatt. These days she’s a motivational speaker and writer. Then, she was known as the “left-thumb blogger.” Because of cerebral palsy, Glenda did all of her writing with her left thumb. It was the digit that she had enough control of to use the existing technology.
Glenda speaks what she calls “Glendish”. She uses a letter board. I was pretty intimidated. Not because of the tools. It was because she was wise. And motivated. And committed. Things that always intimidate me. But we talked. We sat in the center of hundreds of other conversations, with thousands of words washing across us. And we picked each word with care. We listened and spoke with a precision. It was work to interact accurately between my struggle to hear and Glenda’s work to speak. Sometimes, because I just couldn’t grasp a word, she resorted to her word board. But we talked.
For Glenda, social media was freeing. With her thumb, she was able to email and tweet. She participated in conversations with passion, compassion, and humor.
Soon, Glenda got an iPad. Although I’m writing this on an iPad, in those days I thought they were about entertainment. Until the day I watched Glenda working. The swipe interface allowed her to use her left thumb and her forefinger. The vocal synthesis software from Prologue gave her a voice. I understood that technology that is entertaining can also be empowering.
Why this long explanation? Because recently I’ve read about Glenda’s interaction with healthcare professionals.
In one situation, Glenda was told that the doctor expected Darrell, her husband, to answer questions about her condition because “it would be faster.” In another case, Darrell was told to leave her ED room because there wasn’t enough room for his wheelchair and hers.
Having Darrell around isn’t a luxury or a convenience. Darrell is part of Glenda’s voice. And I understand that having a wheelchair and a scooter in an exam room creates a space challenge. But gathering history, pursuing health assessment, checking on needs, and assessing care outcomes are essential parts of health care. And Darrell is part of Glenda’s voice, not a substitute for her mind.
As Glenda wrote, “In that moment I knew my patient’s rights were being denied. Patients who are Deaf wouldn’t — or shouldn’t — be denied access to an interpreter. Non-English speaking patients requiring a translator would definitely not be denied one. That would surely hit the news! Yet, I, with a significant speech impairment, was denied my preferred means of communication. That is discrimination!”
Recently, Glenda took a letter to her eye doctor. She explained the reactions that her body has during the exam process. It helped, a little.
I’ve watched how these challenges show up in the rooms I enter as a chaplain.
Jim and his son were struggling when I walked in. The tube in Jim’s throat meant he couldn’t make sounds. The stroke in his past had taken his fine motor skills, making writing almost impossible and illegible. There was a letter board that his son was trying to use, but there was one more disability that Jim had. The impatience of his son.
Jim Junior would ask a question and then push for a fast answer.
But communication doesn’t work like that.
In perfect mechanical terms, the auditory nerve processes sound, the eyes gather clues, the brain hears the question, forms an answer, and then has to figure out how to express that answer using the available communication technology.
Even with ears and eyes and brains and voices and hands that work as designed, communication is a frustrating process, because behind the data is meaning. At our best, we all struggle to have people understand our meaning, our heart, our intentions, our fears. We struggle to understand those offerings from others.
And in the hospital, no one is at their best.
1. Stop. Stop assuming and start assessing. Ask questions about capacity. Gather clues. Build your awareness.
2. Develop a database of communication understanding. I watched a doctor talking to a patient’s wife about a critical situation. The patient had a dissecting aorta. In a younger man, the surgery would be urgent, major, and hopeful. For this patient, even the surgery could be deadly, and the condition would be, too. The doctor explained it as carefully and gently as he could. The wife responded with the sympathy she would use if the doctor were describing the death of his dog. Compassion, gentleness, but a vague detachment.
It was frustrating for him.
When he walked out, I mentioned that she had seemed to have some cognitive impairment, the kind that I recognized from my mother’s Alzheimer’s shaped thinking. “That’s good to know,” the doctor said.
While identifying symptoms and diagnoses can lead to stereotyping, they can also lead to adaptations. Cues can make us stop and ask questions rather than plunging on. “Do you have any questions,” is not a helpful question if a patient or family have not heard or processed the information.
3. Develop communication alternatives. I’ve started carrying a laminated sheet of paper and a dry-erase marker so I can write to patients who cannot hear, and I can invite those who cannot speak to write. One research project identified several communication tools that could be used in intensive care areas with intubated patients and then pointed out that most ICUs don’t have the tools available.
If we started assessment with communication accessibility, it would make the rest of the assessments more effective.
Eddie died three days after being diagnosed with lung cancer. He’d been caring for Mabel after her stroke. Mabel was in a wheelchair. Her right hand rested on her lap. The only word she could say was “yes.”
FINISH THIS LIST.
- https://medium.com/@GlendaWH/accessibility-includes-communication-bite-me-8c39491da9bc. Accessed 1/17/2018. ↵
- Insert reference ↵