Originally published on May 14, 2024 in the SF Chronicle and written by Shira Stein

WASHINGTON — As House floor speeches go, the subject of recent remarks by Rep. Jennifer Wexton, D-Va., was unremarkable — she proposed renaming a small-town Virginia post office. But the speech nevertheless marked a new era for people with disabilities: Wexton’s words came from an app, not her own voice.

Wexton, 55, was diagnosed with a rare neurodegenerative disease in September 2023, a condition she describes as “Parkinson’s on steroids.”

Progressive supranuclear palsy has affected the once-powerful voice she used as a trial attorney, state legislator and a candidate for the House. Now, her voice comes from a computer. Wexton, like other people who have difficulty speaking, uses an assistive app that converts written text into speech, known as augmentative and alternative communication, or AAC.

Congress, the often-staid institution, can be slow to change and accommodate people with disabilities. Lawmakers who use wheelchairs were unable to access the podium on the House floor until 2010. But newer lawmakers like Wexton, Pennsylvania Sen. John Fetterman — who had an ischemic stroke during the 2022 campaign that left him with difficulty processing spoken language — and others are making disabilities like visual impairments and deafness far more visible.

Experts say their struggles to secure accommodations within the archaic structure of Congress mirror the challenges facing disabled people more broadly: They’re often forced to advocate for their needs in a society that wasn’t designed to include them. As more prominent people speak publicly about their need for accommodations, disability rights activists expect it will be easier for the people who come after them.

The Senate has been even more reluctant to allow technology within its walls than the House, but staff went out of their way to accommodate Fetterman’s needs, he said. Senate staff installed a display monitor with live captions at his desk on the Senate floor and an additional monitor that can be placed on the dais when he presides over the chamber.

Nearly two years after his stroke, Fetterman said he no longer needs the monitors and can get his captions via an app on his phone. “Now I can just sit there at the chair,” he said.

Fetterman spoke to the Chronicle via Zoom to allow him to more easily read captions. He also does impromptu interviews with reporters in the hallways of the Capitol — something he was unable to do in his first few months in the Senate — because of the captioning app.

“I’ve been able to have this captioning program, and I can take this wherever I go. And now I’m able to do this interview that I’m having right now, or I’ve lost count how many interviews I did just today,” Fetterman said.

The technology was “transformative” in its ability to free him from the stress and isolation that contributed to a severe case of depression for which he sought inpatient treatment in February 2023, Fetterman said.

Fetterman’s Senate campaign was marked by questions over whether he was unfit for the job because of his need for accommodations.

“You’re not illiterate if you need glasses to read. And that’s the same situation. This is a tool that allows you to participate fully,” he said.

Rebecca Cokley, a disability rights activist and former executive director for the National Council on Disability, said, “things always improve when you have a pioneer who goes first. I’m happy that (Fetterman) fought the fight and was very public about it and was very open about it in such a way that is hopefully making things better for Rep. Wexton and those that follow her.”

Wexton said she had some difficulties getting her colleagues used to the changes, but now it has become a normal part of her life. Some lawmakers initially spoke to her like a child, which she said was annoying and “made me crazy.”

Wexton spoke with the Chronicle last week, using both her own voice and her assistive app. Her speech was difficult to decipher and, at times, she needed to repeat herself or have her staff interpret what she was saying. Her staff assisted after the fact by reviewing her quotes to ensure their accuracy.

“It’s hard for people to understand me,” Wexton said, so “(I) try to remember to slow down when I speak.”

Wexton, using the AAC, said she “was having trouble communicating verbally in a way that could be understood by others” and using the AAC “makes it easier for me to do my job.”

Wexton has been using her assistive app for several months, but people took notice when she gave a speech on May 6 in support of a bill to rename a post office in her district after former Secretary of State Madeleine Albright.

Wexton said she wanted to recognize Albright, but “if I did it the way I did now, I wouldn’t be understood.”

House rules prohibit audio from being played or recorded on the floor. Wexton, who is the first person to use an AAC on the floor, had to get permission from the House Rules Committee. “Nobody’s ever seen anything like this before, so (we had) to make sure that it was OK,” Wexton said.

Each time she wants to speak on the floor, she will need to seek approval. Allowing her to regularly speak on the floor using the AAC would likely require a change in this session’s rules, which Republicans are unlikely to allow. Wexton said she expects that to change when the next session begins in January 2025, even though she’ll be retiring and won’t be able to take advantage of it.

“When people can’t see your disability, it’s harder,” Wexton said. “I’m the same person I’ve always been, I just don’t speak very well.”

Fetterman and Wexton may be the most visible people with disabilities in Congress right now, but they aren’t the only ones. Rep. Kevin Mullin of San Mateo is a first-term lawmaker with progressive hereditary hearing loss that he began noticing in his 20s.

Now 53, Mullin wears hearing aids, uses captioning devices and reads lips, but still struggles to fully participate in large, noisy environments like the House chamber.

“My hearing impairment has made me a little more insular, I think, because it is a struggle to have conversations in a noisy environment,” Mullin said. “You just learn to adjust to it and try to find quiet environments.”

The Chronicle talked with Mullin in the House Speaker’s Lobby just off the House floor, a smaller and quieter environment with several alcoves for lawmakers to speak with reporters.

Mullin said occasions like the State of the Union or a speech by a foreign president are especially difficult.

“You want to be in the moment, but the acoustics are terrible in the House chamber, and the technology is antiquated,” Mullin said. “I really want to hear what they’re saying. So actually, what I will do occasionally is watch it from my office because I have captions on my TV.”

Watching speeches from his office is a better experience, he said, but it prevents him from being “in the moment with the rest of your colleagues.”

Mullin also struggles when receiving classified intelligence briefings. When he enters a secure facility used for intelligence sharing, it is often part of a House-wide briefing that includes all lawmakers from the chamber. He is allowed to wear his hearing aids into the room, but has to surrender all other technology, including captioning applications.

It’s “exceptionally hard to hear” in the cavernous room, he said, so he goes early and tries to get as close to the stage as possible. “Even then, I’m not getting 100% of it.”

Fetterman also struggles with classified briefings because the captioning software isn’t allowed. He is able to send staff with proper clearance to those briefings, who can then share the information with him.

“If we can live in this day and age when I can have 10,000 photographs on a phone, why haven’t we figured out how to be able to maintain the security of classified documents on technology?” Cokley, program officer for the Ford Foundation’s disability rights grant program, said. Fetterman and Mullin’s inability to access captioning in the secure facilities that handle classified materials highlights the need for a formalized accommodations process within Congress, she said.

The Governmental Accountability Office, an independent agency that audits Congress, recently found a lack of consistency in how these secure facilities handle accommodation requests.

Mullin wants to see Congress make more changes like those made for Wexton.

Her app-assisted floor speech “was a reminder that members have a variety of health things happening (and) that the institution should be flexible enough — with regard to our rules and so forth — to allow for those kinds of moments,” Mullin said.

There are probably other lawmakers who need accommodations and aren’t using them, Cokley said. “Maybe this will not only help people with disabilities see themselves as being able to serve as members of the House or Senate, but also maybe it’ll make it easier for those who are actively serving — who, frankly, are not doing their best job possible because of the stigma of asking for accommodations.”

Even though Wexton will leave Congress at the end of the year, her efforts to secure accommodations will pave the way for another woman who could change how the chamber operates.

Lateefah Simon, the front-runner in the race to succeed Oakland Rep. Barbara Lee, is legally blind. While she does have some low vision, she expects to need accommodations.

“Being born and raised in the Bay Area and San Francisco, I learned from a very young age to ask for what I need,” Simon said, and she plans to do the same in Congress.

“It’s one of the things that does keep me up at night because I’m not in that space yet,” Simon said. She plans to meet with Democratic staff this week to discuss what her needs might be, including larger fonts for both printed and electronic materials and access to seating charts — since reading name plates across a room isn’t possible for her.

Simon would be only the second legally blind member of Congress. The last one, former Sen. Thomas Gore of Oklahoma, retired in 1937. Four other lawmakers have had vision loss; only Republican Rep. Dan Crenshaw of Texas is still serving.

Simon said she is most nervous about being a single mother in a place other than the Bay Area — the only place she has ever lived. She plans to bring her youngest daughter to Washington, D.C. with her, but is concerned about picking her up and dropping her off at school with the unpredictable nature of the House voting schedule and her inability to drive.

Simon said she is looking forward to having staff who can assist her, including with making her way through the Capitol and driving her around.

Seeing other lawmakers “openly talking about the ways in which they move and how they’re different and what they need is exciting,” Simon said. “It actually opens the door for me and makes it easier, and I want to do that for other folks.”

The difficulties the lawmakers are still experiencing, however, exemplify the problems disabled people have in society writ large.

“It’s really indicative of the hoops and the ills that disabled people have to encounter that people — that members (of Congress) — are even having to fight as much as the common man or woman to be able to fulfill the essential functions of their job,” Cokley said.