It’s hard to put words into the world right now. It can seem like they’re not big enough to say what we mean or that we live in a moment so on edge that words can feel dangerous. But in my case, there’s an additional reason. I have aphasia. Aphasia, which results from damage to parts of the brain that control speech, became famous for 15 minutes this spring when news broke that actor Bruce Willis had been diagnosed with it. But I’ve known about it ever since I acquired it from a drunk with a truck in 2006 and suffered a brain injury.
Aphasia has been back in the headlines following the stroke that Pennsylvania Lt. Gov. John Fetterman suffered days before winning the Democratic Senate nomination in May. Fetterman’s campaign said earlier this month that he didn’t have aphasia. Whatever the diagnosis, though, it’s clear that several months post-stroke, Fetterman still struggles to process what he hears and sometimes jumbles words when he speaks.
Although scores of experts agree that speech and language disorders like aphasia do not affect intelligence or other cognitive functions, they also agree that they do affect how people perceive our intelligence.
The stroke added a new wrinkle to a race that could determine which party takes control of the 50-50 U.S. Senate. His Republican competitor, Mehmet Oz, has certainly made the most of it. As someone who has similar struggles, it pains me to see how the Oz campaign misrepresents Fetterman’s condition, creating more challenges for those of us who are already shamed for what is a common and often curable condition.
Although scores of experts agree that speech and language disorders like aphasia do not affect intelligence or other cognitive functions, they also agree that they do affect how people perceive our intelligence. The Oz campaign is clearly hoping that perception will hurt Fetterman.
In one egregious example, Oz issued a list of “concessions” for their debate Tuesday night that many see as mocking. The concessions include “not hurting” Fetterman’s feelings, allowing frequent bathroom breaks and paying for “any additional medical personnel he might need to have on standby.” Fetterman, a 53-year-old man with a Master’s degree from Harvard in public policy, issued a statement saying, “My recovery may be a joke to Dr. Oz and his team, but it’s real for me.”
An irony in the Oz campaign’s line of attack is the fact that everyone mixes up words from time to time — including Oz himself. In August, Oz’s own staff posted a video of Oz visiting a supermarket and misstating the name of the store he was in, seeming to merge the names of two chains into one that doesn’t exist.
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Appearing on Newsmax after that gaffe, Oz told the host that he got the name of the store wrong because: “I was exhausted. When you’re campaigning 18 hours a day … Listen, I’ve gotten my kids’ names wrong as well. I don’t think that’s a measure of someone’s ability to lead the commonwealth.” Unless, it seems, the flubs come from Fetterman. Evidently, it’s also not important that Oz, who is reportedly worth more than $100 million, doesn’t know how many homes he owns. It’s apparently either 10 or two.
Fetterman now starts many speeches by asking his audience, “How many of you have had your own personal health challenges?” Every time, nearly every hand in the audience goes up. Mine certainly would.
I acquired aphasia in an instant when a drunk driver who stole a truck compressed a parked car. I was in the car. One moment, I was a freelance writer. The next moment I could barely speak. Building words while rebuilding my life was like building a plane while flying it, but I was not doing it while being demeaned and attacked like Fetterman is each day.
Still, I experienced scores of encounters with people who rolled their eyes at me when I wasn’t speaking quickly enough. I remember feeling shamed, embarrassed, diminished — yet somehow I remained determined, and today I seem “normal” to most people.
Benjamin Abella, a professor of emergency medicine at the University of Pennsylvania, criticized the Oz campaign for shaming a stroke survivor. While aphasia is often temporary and can sometimes be cured, it’s less clear that shaming can. “It is impressive to me that John Fetterman is showing grit and perseverance and working at recovery,” Abella wrote. “Think of members of your family or your friends who have tried hard to battle back from a medical problem. You celebrate them, right?”
The Philadelphia Inquirer endorsed Fetterman by highlighting another one of his strong points: “He may take a couple of moments more to collect his thoughts and find the right words — but he knows what his values are and is capable of communicating them. The same cannot be said for his opponent, Mehmet Oz, a man wholly unprepared to be Pennsylvania’s U.S. senator.” The same day, an editorial in The Yorktown Dispatch pointed out that, though Fetterman “suffered a nearly fatal stroke,” the Democratic candidate “is a lot more coherent than his opponent.”
An irony in the Oz campaign’s line of attack is the fact that everyone mixes up words from time to time — including Oz himself.
In fact, several U.S. senators, including Ray Lujan and Chris Van Hollen, have successfully served after suffering strokes. Arlen Specter, Pennsylvania’s longest-serving U.S. senator, continued to hold office for 18 years after brain surgery in 1993. President Joe Biden survived two aneurysms in 1988. Disabled people are the single largest minority in the world. We are also the only minority anyone can join at any time.
A key Republican attack against Fetterman has centered on his use of closed-captioning technology, which translates audio into text so he can see what’s being said. He relied on it during his first post-stroke on-camera interview, which was conducted by Dasha Burns of NBC News. But many elected officials use assistive technology, from glasses to wheelchairs to hearing aids and beyond. So do nearly two-thirds of working Americans.
At least 180,000 Americans are diagnosed with aphasia every year, and aphasia experts I consulted estimate that as many as 4.5 million Americans have it. That would make it more prevalent than Parkinson’s disease, cerebral palsy, multiple sclerosis and Lou Gehrig’s disease combined; it could well be the most common condition almost no one talks about.
But now I’m talking about it. It’s been a tough road for me, and the attacks on Fetterman bring back some of the pain. But they speak to courage, too.
Source: | This article originally belongs to Nbcnews.com
