After a news story referred to Sen. John Fetterman’s use of closed captioning as a “special need,” Twitter erupted in outrage. The freshman Pennsylvania senator has an auditory processing disorder resulting from a stroke that makes it difficult for him to process verbal speech, hence the closed captioning displayed on screens in front of him.
Fetterman returned to the Senate on Monday after being hospitalized for two days last week for testing to rule out a new stroke.
It’s not the first time Fetterman’s communication problems have caused a stir. Reporters and others questioned his fitness to serve in public office after he exhibited speaking difficulties and used closed captions in a televised debate with his opponent, Mehmet Oz.
This of course spurred criticism of the critics. Disability Rights Pennsylvania pushed back in a statement released in October. “The reporting is reinforcing stigma around disability, stroke recovery and is harmful to the disability community.”
Why do stroke survivors object to certain types of language?
Consequences of stroke
Every year, nearly 800,000 Americans have a stroke, according to the Centers for Disease Control and Prevention (CDC). Every one of these strokes is different and can result in different degrees of disability.
“We’re all individuals so when there’s an insult to your brain, whether it's from a stroke or whether it’s a traumatic injury, all of the consequences are as individualized as the person themselves,” said Darlene S. Williamson, chairman of the board of directors of the National Aphasia Association.
Symptoms typically depend on the area and amount of brain that was affected and by each person’s physical makeup, explained Veronica Rowe, assistant professor in the department of occupational therapy at Georgia State University.
Many people experience physical limitations such as paralysis and about one-third experience aphasia, which involves difficulty with one or more of the four aspects of language: reading, writing, listening, and speaking, Williamson said. While Senator Fetterman’s office has told media outlets that he does not have “definitive aphasia,” auditory processing is connected to the listening aspect of aphasia, Williamson said.
Language can perpetuate stereotypes
As Disability Rights Pennsylvania stated, words can serve to reinforce stigma. Terms like special needs are especially “unfortunate” when connected with communication because they “get linked to intellectual impairment,” Williamson said.
Carl McIntyre, an actor who had a massive stroke in his mid-40s, is one survivor who objects to the term because, he said, it has negative connotations.
“Every person is different,” he wrote in an email to BuzzFeed, adding that his recovery has been slower than expected. “First, I thought maybe two or three weeks I could work again. But long recovery — two years only one or two words. No sentences.” Three or four years later, he could make sentences and he made and starred in an award-winning movie, Aphasia, which portrays his sometimes hilarious efforts to navigate his post-stroke world.
“A point of discussion throughout Senator Fetterman’s campaign has been whether you can separate communication disorders from memory and decision-making and other aspects of cognitive function,” said Brooke Hatfield, associate director of health care services in speech-language pathology at the American Speech-Language-Hearing Association (ASHA). “Communication disorders are different from cognitive disorders.”
Visual aids do not mean cognitive function has changed
Conversations around so-called disability tend to focus on the deficits to the exclusion of all else.
“Just because someone has a problem with auditory information circuitry, that doesn’t mean other circuits in the brain aren’t working,” said Jill Bolte Taylor, a neuroscientist and author of My Stroke of Insight, which details her own recovery from a stroke. “To help him navigate, Senator Fetterman gave himself the aid of visual reading because that could hook into portions of the circuit that were working well.” Bolte Taylor does not object to “special needs.”
A visual aid would not work well for other stroke survivors who have trouble reading, including my husband, who had a massive stroke almost 12 years ago and has regained much of his ability to speak, read, and write.
He doesn’t rely on any specific devices or technology other than patience, spell check, the dictionary and, when all else fails, me. He does, however, wear an insert in his shoe to compensate for an injury sustained during childhood which, I suppose, could be considered an assistive device to help him walk better.
McIntyre wrote that right after his stroke, he “was frustrated because I know words but … stuck. Brain was prison. Mouth and brain … different timing.” My husband agrees wholeheartedly. Now McIntyre feels lucky “because I can drive and work and can find ways to communicate.”
“To me, it always goes back to how do we capitalize on what’s working,” Taylor said. “The question is not what is not working.”
It doesn’t make room for new strengths and talents
Bolte Taylor says it took her eight years after her stroke to be able to say she had regained 100% of her abilities and that now she is “more than that.”
In the absence of one thing, a person may have gained something else, she said. “There’s something new. There’s insight they didn’t have,” she noted. “I have gained compassion and openness to what I am in the bigger picture in humanity and how I can use my skills to help instead of just going back to being a brain scientist and climbing the ladder.”
Many stroke survivors say the same or similar things. Bob Mandell, who had a stroke 25 years ago and then created the Stroke Recovery Foundation, says that his stroke has enabled him to help people. “I coach people how to get better, including aphasic people,” he said.
McIntyre’s new superpower is listening. “I can’t read well, but listening is my thing,” he wrote. “I love people and I like to talk and listen. I know I listen better now. Maybe better person.”
It makes it sound like assistance is negative
When does a “need” become “special”? Who among us doesn’t need some help? “We all use different supports for different things, maybe because there’s a gap between what we would like skills to be and what they are,” Hatfield said. “I wear glasses and without them I don’t get very far.”
Some people need a little more time to speak, a calendar to keep track of appointments or a bench to rest on during a walk. Closed captioning made it possible for Senator Fetterman to incorporate campaigning and work into his recovery, something my husband and I call “real-world therapy.”
Assistive devices or technology for stroke survivors simply enable them to participate fully in life. “We utilize our strengths to overcome any difficulties and rely on accommodations to get back to living life to the fullest,” Rowe said.
Recovery has no due date
When my husband had his stroke a dozen years ago, a doctor told us that whatever improvement we saw within three months would be all of it. He was wrong. My partner regains old abilities and develops entirely new ones every day.
There is no cutoff date for recovery from stroke. “Neural networking and neuroplasticity continue indefinitely, particularly when appropriately challenged,” Williamson said. “Recovery continues indefinitely, and the more you are out in society and living your life, the better it is for your brain, and that’s very true of Fetterman. He’s out there challenging himself.”
“People ask me how long it took for me to recover and I would say, ‘Recover from what?’” Bolte Taylor said. “Everything is a process.”
Mandell uses the term “stroke victor,” which is part of the title of his book: How to Go from Stroke Victim to Stroke Victor. “A stroke victor is not someone who gets completely better,” he said. “They’re engaged in their recovery and they’re active. It’s not the victor who won the game. They’re playing in the game.”