Thursday, May 23, 2024

Meet the woman who helped inspire major advances for disabled travelers

The 19th introduces Emily Voorde, a longtime friend of Secretary Pete Buttigeg whom he credits for his understanding of traveling and navigating the world as a wheelchair user.   

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Portrait of Emily Voorde on left side with her image reflection visible on the glass on the right side

Jamie Kelter Davis for The 19th

Secretary Pete Buttigieg has made unprecedented advances for people with disabilities during his tenure at the Department of Transportation. He has spearheaded disability events at the White House and has ushered in changes to air travel that will make airplane bathrooms more accessible and widen airplane aisles to accommodate personal wheelchairs. Airports, train and bus stations across the country have made improvements to increase Americans with Disabilities Act compliance. 

These are not new issues for Buttigieg, and they featured heavily in his 2020 presidential primary platform. He was not the only Democratic presidential hopeful to have a disability platform, but his was one of the first to be released. 

His commitment to disability policy is personal, thanks in no small part to his longtime friendship with Emily Voorde, 31, who met Buttigieg when she was in high school and he was running for mayor of South Bend, Indiana. She worked on Buttigieg's presidential campaign and went on to work for the White House. 

Buttigieg credits Voorde with his interest in disability rights. It is something he has always cared about, but knowing Voorde brought it closer to home for him, he said. 

"I've always recognized the importance of disability work in policy, but there's no way that I would have the same understanding of it. I would like to think that I'd pay just as much attention to it no matter what. But there's no question that my understanding of it was shaped by Emily's experience and her expertise," Buttigieg told The 19th

Voorde, for her part, is humble about the influence she had on Secretary Buttigieg. "I feel really fortunate to have had that proximity to him. I think in some ways, even if they were small, I made disability more tangible," Voorde told The 19th. 

Despite Voorde's impact, few people know her name. 

Voorde was born in South Bend, Indiana, the younger of two children. Her mother was a nurse and her father served on the city council. Voorde was born with osteogenesis imperfecta, a genetic condition that makes bones brittle and impacts growth. Voorde uses a wheelchair to get around.

 

Advocacy since childhood

Emily Voorde works on the computer at home

Jamie Kelter Davis for The 19th

Emily's mother, Cathi Voorde, used to give demonstrations at school to explain Emily's condition. She called it the "spaghetti talk."

"I would take some spaghetti and chicken bones and say, 'The chicken bones, these are like your bones, they bend a little bit,'" she would demonstrate. Then, she would bring out dry spaghetti and bend it, to show how much more easily it would snap. "Emily's bones are like spaghetti. They break." 

Despite the risks, Emily Voorde was an active child. She played volleyball and participated in gym class with the other students. When the local public school pulled her from gym, her parents enrolled her in Catholic school, where she got more individualized attention and was more purposefully integrated by school staff. 

"We thought public school would be the best option since she would have a [legally mandated individualized education plan], but it turned out it just wasn't the experience we'd hoped for. There was an incident when she was in gym class, bouncing a ball with an occupational therapist. The gym teacher yelled, 'Get that child out of my gym,'" Cathi Voorde recalled.  

Voorde's parents were invested in ensuring that she had full access to everything other children had. 

"I was certainly the only … wheelchair user in my peer group growing up, the only one in my grade school, the only one in my high school," Voorde said. However, her parents were careful to introduce her to other people with disabilities, including her own disability.

"Very early on my parents instilled in me self-advocacy and using my own voice," Voorde said. 

Voorde's parents took her to conferences organized around osteogenesis imperfecta and got her connected with local disability groups. This gave Emily a sense of independence and gave her parents possibility models for her future. Seeing other children and adults like their daughter was a powerful experience. Voorde's mother particularly remembers hearing a baby cry at one of the first osteogenesis imperfecta conferences she attended. 

"I had tears in my eyes because that baby sounded just like my Emily," Cathi said. 

Voorde first met Buttigieg when he came to speak to her high school government class about civil engagement.

"He was not only one of the most articulate people I'd ever heard speak, but he was approachable and clearly passionate about [South Bend] and making it better. At the time, South Bend was kind of on the decline or at least on a plateau. Seeing this young guy, not much older than me, who had already been out in the world and who chose to come back, to run for mayor — I was just really impressed," Voorde said. 

She volunteered for Buttigieg's mayoral campaign and, during college, interned in his office for a summer. 

"She's just somebody who impressed everybody around her right away with her talents. She makes any workplace, any team stronger. She has a relentlessly positive way about her," Buttigieg said. 

After her internship, Voorde completed an undergraduate degree in political science at the University of Notre Dame in South Bend and went on to pursue a master's degree in education.

An unexpected opportunity

keepsakes from Voorde

Jamie Kelter Davis for The 19th

Voorde wasn't planning on going into politics. She wanted to be a teacher. 

"Kids don't have any preconceived notions. They don't have any assumptions. They don't have that explicit ableist lens that we all develop. They're just happy to ask their questions and take my answers as they are," Voorde said. She also likes that when she works with kids, they're more likely to be at eye level with her in her wheelchair. 

Voorde taught at Resurrection Catholic, a school in an underserved community in Pascagoula, Mississippi. She wasn't sure if she wanted to stay in education, so she applied to law school and got accepted at Loyola University Chicago. 

Then, in 2019, she got a phone call that required a quick, potentially life-shaking decision: Should she go to law school or join Buttigieg's nascent presidential campaign? 

"I had accepted [my law school offer] already. The deposit was in. But there was no question in my mind what I wanted to do," Voorde said. She joined Pete for America the next day. 

"My suitcase was packed, and I wouldn't be home for 10 days, wouldn't be off for longer than two days at a time for the next seven months," Voorde said. 

During the campaign, Voorde initially worked in general operations before transitioning to work for Chasten Buttigieg, Pete Buttigieg's husband. She was his "body woman," and her job was to ensure that his travel, events and campaign stops went smoothly. In his memoir, "I Have Something To Tell You," Chasten Buttigieg wrote that Voorde ensured that he stayed fed and hydrated when the responsibilities of the campaign became too great for him to keep track of everything on his own. 

"Emily, my body woman, would start asking me things like 'have you drunk water today?' Sometimes the answer was 'oh no, I forgot'!" Buttigieg wrote. 

In an interview with The 19th, Chasten Buttigieg described Voorde as "indispensable." He remembers liking her almost instantly when they first met in South Bend.

"I felt like I had met someone who understood me as a person and was interested in my well-being, not just in the success of my husband or my husband's candidacy. I felt like I'd met a friend," Chasten Buttigieg said. 

Voorde was not working in a policy role, but she did shape the way Pete Buttigieg and his team engaged with and spoke about the disability community.

"I had the chance to brief the policy team as well as Pete himself on best practice in talking about and engaging with disability, which was really powerful. If you have a candidate or elected official who won't even say the word 'disabled,' that conversation isn't going anywhere. I gave Pete and the policy team permission to talk about and with people with disabilities, to talk about accommodation. I helped give them the tools to engage authentically," Voorde said. 

Chasten Buttigieg also remembers the challenges he and his husband witnessed when Voorde traveled with them during the campaign. Airlines damage thousands of wheelchairs every year, and getting them fixed is a lengthy, expensive process. On the campaign trail, it happened to Voorde.

"Emily and I were changing planes in an airport. I forget which airport it was. But I remember it was a very tight connection, and Emily's chair was delivered to the jet bridge. I would typically grab the wheelchair and Emily would pivot into the wheelchair. I'd grab the bag, and then we'd go. I remember trying to unlock her wheels, to pivot the chair closer to her. And they wouldn't unlock. It was then when we realized that the entire wheel frame had been bent. There was no unlocking the chair. It was just broken," Chasten Buttigieg said. 

After a lengthy wait, the airline brought a temporary chair for Voorde, but it was too big for her to operate. So Chasten Buttigieg wheeled her through the airport until her mother could come back with an older wheelchair from home.

"I was off the campaign trail for a few days while we sorted that out. It was absolutely dehumanizing and demoralizing. It's not just that loss of humanity in the moment, that loss of independence in the moment. Because it was a time that was of such professional importance to me," Voorde said. 

Pete Buttigieg also remembers the incident, saying, "It's basically like arriving at the destination without your legs." 

It wasn't an isolated incident, although it was certainly the most severe. More than once, Voorde arrived at a hotel during campaign travel to find that her hotel room or a venue wasn't accessible. Pete Buttigieg was impressed with Voorde's resilience.                                                                                          

"I saw her problem solving and getting through it, but I also came away with a very strong sense that she shouldn't have to deal with that," he said. 

Through her relationships with Pete and Chasten Buttigieg, she has helped shape what many experts describe as some of the most impactful, significant changes to air travel for disabled passengers in decades. 

Kelly Buckland, a longtime disability rights advocate, went to work for the Department of Transportation in 2021, in part because of how impressed he was by Secretary Buttigieg's commitment to disability policy. 

"The Transportation Research Board did a feasibility study about whether or not you can fly with your wheelchair on airplanes. They determined it was feasible and they said that the Department of Transportation should pick up the research from there. And so I wanted to have a part in that," Buckland said. For the first time, he felt the pull to become an insider and work for the government. 

Buttigieg is Buckland's boss, so he's not unbiased. But he has also known and met with many public officials over the course of his long and storied career. "I think Secretary Buttigieg is far and away the best," he said.

"I think his relationship with Emily, during the campaign and more, made him aware of what traveling with a disability is like and for that matter what living with a disability is like. I think he's really well rooted in not only just human rights, but disability rights, and a lot of that is because of his hanging out with Emily," Buckland said. 

Road to the White House

photo showing Voorde driving car with hand controls

Jamie Kelter Davis for The 19th

In March 2020, Pete Buttigieg suspended his presidential campaign. Voorde wasn't sure what she wanted to do next. She didn't have much time to think about it. A week later, shutdowns began as a new virus swept across the country — COVID-19. 

Over a million Americans have died from COVID since the start of the pandemic, and hundreds are still dying each week. It is the third leading cause of death in the United States. Disabled, older and immunocompromised people are at the highest risk of severe illness and death. 

Voorde spent the early days of the pandemic resting from the campaign, uncertain about what she wanted to do next. "I was just sitting and taking stock honestly, recovering and getting myself caught up and rested," Voorde said. 

She took a job at Notre Dame's Sara Bea Center for Accessibility Services, helping disabled students adjust to changes from the pandemic. Shortly after starting, she was approached about working for President Joe Biden's administration as an associate director of the Office of Public Engagement, serving, in part, as a liaison between the White House and the disability community. 

Voorde was not the first disability community liaison for the White House, although she was the first since President Barack Obama's administration. President Donald Trump's administration declined to appoint one. The role does not involve shaping disability policy but has proximity to power and the presidency that few in the disability community have. 

"I would describe the office I worked in as the front doors to the White House," Voorde said. 

Voorde was responsible for informing the disability community of Biden's achievements, organizing events and managing relationships with senior leaders in the disability rights and disability justice movements. Her most notable achievement was overseeing the hiring of the White House's first-ever full-time, on-site sign language interpreters

Under normal circumstances, a job in the White House is high pressure. But Voorde was faced with a unique challenge: The organized disability community, leading organizations and advocates have been furious at the Biden administration's handling of the pandemic. As the "front doors" to the White House, Voorde was responsible for listening to these complaints. But as someone without a policy role, she was not in a position to make recommendations. 

Under Biden, much of the funding for COVID programs has lapsed. Disability advocates have largely been unhappy with the lack of attention the administration has paid to the ongoing pandemic. Alice Wong, a prominent disabled advocate and organizer of the #CripTheVote hashtag, recently announced she will not be voting for Biden this year, in part because of his handling of the pandemic. 

In 2022, displeasure with the administration bubbled over in public, when then-CDC director Rochelle Wolinsky described the deaths of people who were "unwell to begin with" as "encouraging news" on "Good Morning America." Walensky apologized and the administration asserted that her comments had been misconstrued. But the damage was done. Voorde was working at the White House throughout the debacle.

"The Biden White House put Emily in an impossible position," said Matthew Cortland, a senior fellow at left-leaning polling firm Data for Progress. "You cannot actually, meaningfully engage with the community you're actively abandoning," they said. 

"Not being able to do very much at all, other than tell the powers that be that the community is frustrated, they're angry, they're scared, and they're dying. The only tool I had in my toolbox was just passing along that feedback. And that was a really helpless feeling," Voorde said. 

She does not regret her time at the White House, and she still fully supports Biden and the administration. But the conversations took a toll. 

"Every single day, I talked to people saying, 'I am dying' or 'My family is dying' or 'My community is dying.' Or that they're scared, or that their community is scared," she said. 

'Doing my best by my community'

photo showing Voorde at the entrance to her home

Jamie Kelter Davis for The 19th

Voorde left the White House in August 2022, a little over a year after starting. In addition to the pressure she felt at work, she wanted to spend time closer to her family in South Bend. 

"It was bittersweet, because I did feel immensely privileged to have had the opportunity to serve the administration," she said."But I had this nagging sense that in staying in the role, I wasn't doing my best by my community. That's hard to reconcile when, on paper, working for the White House is a dream job. Especially for somebody from little South Bend that hadn't seen myself represented in politics in the White House," Voorde said. 

She has started her own disability consulting firm, INTO Strategies, which has already landed some high-profile clients, including Microsoft. She isn't writing off the possibility of going back into politics. 

"I certainly wouldn't count it out. I don't think I'd run. I see myself as a background player, as somebody that's on the staff side, but we'll see. I always say that if I got back into campaigns it would have to be for Pete or somebody like him," Voorde said. 

 

This story was produced by The 19th and reviewed and distributed by Stacker Media.