‘A lens of empathy’: disability advocates on John Fetterman and leadership

After Tuesday’s Senate debate, activists describe their career experiences and the standards by which we judge competence

When John Fetterman took the debate stage on Tuesday night in his high-stakes bid to become Pennsylvania’s next US senator, the focus wasn’t on his opponent Dr Mehmet Oz’s conspiracy theories or far-right views: it was on the effects of Fetterman’s recent stroke. The lieutenant governor used a close-captioning device and fumbled some of his sentences – which some commentators claimed was evidence that he was not “fit to serve”.

But some people with disabilities saw things differently: someone adapting to a life crisis anyone could experience.

“To see someone who is in recovery, using these tools that were fairly new to him, and doing so in a public debate where the stakes are so high and all eyes are on him – it’s pretty incredible,” said Maria Town, the president of the American Association of People with Disabilities, a Washington DC-based civil rights organization. “I have a lot of respect for what he was doing.”

town holds mic
Maria Town at the White House in 2016. Photograph: NurPhoto/Getty Images

Fetterman survived a stroke in the spring, which he says left him with an auditory processing disorder. While his campaign has so far declined to release his medical records, it has released a doctor’s note that says the candidate is “recovering well”. Fetterman appeared to be struggling with some sentences during the debate, but he addressed it during his opening remarks. “Let’s also talk about the elephant in the room: I had a stroke,” he said, adding of his opponent, “He’ll never let me forget that.”

In a country where at least a quarter of the population has some sort of disability, the real question should be why we judge politicians’ competence by a biased set of standards, said Town.

Town has cerebral palsy affecting her motor coordination, which makes it difficult to speak in public.

“I cannot tell you how many times I have fallen on stage in front of very important people; you can probably find pictures of me falling in front of Pennsylvania senator Bob Casey,” she said. At another speaking event, a stage wasn’t accessible. “I had to hold on to the [former congressman] Patrick Kennedy to get up the steps, shaking as I did it. And then I just had to get myself together to go speak, and shut out the voices that were like: ‘They’re not going to take you seriously now.’”

Town frequently reminds herself that she’s not the problem; it’s other people’s expectations: “The standards around how we perceive confidence and competence in speech are extremely narrow and extremely fraught.”

Mihir Kakara, a neurologist at the University of Pennsylvania, said that language difficulties do not necessarily signify cognitive impairment. That’s why TV debates don’t just disservice candidates with disabilities but viewers with disabilities as well. “The fast-paced verbal debate format, 15-second rebuttals, being able to interrupt and speak over the other, not having enough time to frame sentences can be conventional for non-disabled candidates, but are incredibly rushed for a person with a language disability.”

Eric Buehlmann, a public policy director at the National Disability Rights Network, says the theatrics of a TV debate have little relation to actual work in the US Senate, where he worked for many years as the legislative counsel to the Vermont senator Jim Jeffords. “You are not making snap decisions in milliseconds, you are not sitting there waiting to push the red nuclear button. You spend a lot of time talking with other members, you spend a lot of time debating and thinking and putting down those thoughts on paper.” And watching the debate on Tuesday, “those are things that I saw that Fetterman is eminently capable of doing.”

Seeing Fetterman on stage was “heartening” for Buehlmann, who survived a stroke decades ago that left him with a permanent vision impairment as well as word retrieval problems. “As someone that had been through this before, I was extremely impressed to see the progress he’s made,” he said. Buehlmann said he was especially interested in whether Fetterman’s experiences would inform his policymaking: “In the disability community, we’re always looking for champions,” he said.

Jeffords was a proponent of accessibility in Congress, a stance that extended to his office, where Buehlmann used aids to help his eyes focus. But not all employers are as understanding: a big reason why people with disabilities face an unemployment rate as high as three times that of people without disabilities. That’s why some disability advocates said the backlash to Fetterman’s debate performance reminded them of their own struggles to find work.

Mia Ives-Rublee, now the director of the Disability Justice Initiative at the Center for American Progress thinktank, recalled how it had taken her much longer than her classmates to find a job despite graduating from one of the nation’s top social work programs. “Every time I disclosed that I had a disability, I knew that employers were calculating whether they could deal with somebody with a disability within their location,” she said. She spent seven months going to more than 100 interviews – even getting rejected from volunteer gigs – before she finally landed a position as a rehab counselor.

Ives-Rublee smiles
Mia Ives-Rublee in New York in 2018. Photograph: Noam Galai/Getty Images for Global Citizen

But the climb is even steeper for disabled people aiming for leadership roles. “What’s so frustrating for the disability community is that so many people use our likeness and our stories to be inspiration porn,” Ives-Rublee said. “But when we are asking to be perceived as competent and take higher positions, non-disabled people are like, ‘Whoa, whoa, whoa, that’s not what we meant!’”

Though there have been US presidents with disabilities, including Franklin D Roosevelt, who hid his use of a wheelchair, there are few major politicians today who identify as disabled. The most prominent is the Illinois senator Tammy Duckworth, a veteran who uses a wheelchair and has been a staunch proponent of accessibility legislation.

But there can be additional challenges for politicians with “invisible” disabilities, like Yuh-Line Niou, an autistic New York state assemblywoman who faced discrimination before her narrow loss in a heated party primary for a US congressional seat this year. “A lot of people accused me of faking, which was very disturbing. People said that I was ‘braindead’ or ‘mentally retarded’, or told me that I’m ‘special needs’. Some of my opponents said that I’m ‘mentally incapacitated’.”

By contrast, Niou calls her disability her “superpower” – something that she thinks makes her a better politician. “It gives me a powerful lens to see the world through that tells me what it is like to live with a disability, or to live after an accident or an illness or trauma – which affects so many Americans. It’s a lens of empathy and understanding.” And focusing on those with the greatest access needs helps everyone, she says: “In the most physical sense, if you build a ramp, it makes it easier for anybody else to go somewhere.”

But even on the most basic level, Niou says that politicians like herself and Fetterman can make a difference just by showing up.

“Children with disabilities write to me to tell me, ‘I didn’t think that I could ever be an elected official, and made it so that I feel like I can.’ They say, ‘I’m not afraid of my diagnosis now.’”


Wilfred Chan

The GuardianTramp

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