Air Travel for People with Disabilities and Threats to Medicaid Funding

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

EMILY VOORDE: I, myself, have personally had my chair absolutely totaled by commercial airlines three times in my life. That's not to mention all the times that it's come back with scratches, nicks, and scrapes.

WELLS: Today, Biden administration official Emily Voorde on flying while disabled and current threats to Medicaid funding.

VOORDE: Anytime you are rolling back funding, cutting services, it takes a certain level of cruelty and disconnect with the American experience and with your constituencies.

WELLS: That's all coming up on Disability Rap. Stay tuned.

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WELLS: Welcome to Disability Rap.

I'm Lindsey Wells. Today we're joined by Emily Voorde, the founder and CEO of INTO Strategies, a disabled-led consultancy firm that assists companies, movements, and political campaigns to develop inclusive access solutions. In 2022, President Joe Biden appointed Emily to a seat on the National Council on Disability, a position she held until January of this year. Prior to joining the National Council on Disability, Emily was the Associate Director of the White House's Office of Public Engagement under President Biden, where she served as a liaison between the Biden administration and the disability community.

During the 2020 presidential run, she worked for Pete Buttigieg's campaign, serving as trip director and body woman for Buttigieg's husband, Chasten Buttigieg. Emily Voorde grew up in South Bend, Indiana. She was born with osteogenesis imperfecta, a genetic condition that causes her bones to be brittle and break easily. She uses a wheelchair to get around. Emily first met Pete Buttigieg when he came to speak in her high school government class during his run for mayor of South Bend. Emily volunteered for his mayoral campaign and then interned in his office one summer. Buttigieg has credited Emily for his interest in and awareness of disability rights. Emily Voorde, welcome to Disability Rap. It is great to have you with us.

VOORDE: Thank you so much, Lindsey. It's really, really good to be here. Thanks for having me on the show.

WELLS: Great. We want to begin with getting your response to some recent news. Then later in the interview, we'll dive more into your own journey as a person with a disability and a leader advocating for disability rights. Last month, the trade group Airlines for America and five airlines filed a lawsuit against the US Department of Transportation, arguing a mandate put into place under the Biden administration to make air travel safe for people with disabilities that said it's unconstitutional. Could you first briefly explain that mandate and why it was so significant? Then we would like to get into your response to this new lawsuit.

VOORDE: The Department of Transportation issued regulation in December of 2024. This would've been under the Biden administration and under Secretary Pete Buttigieg's time as Secretary of Transportation. They issued a regulation which amounted to essentially the largest expansion of rights for air travelers with disabilities, certainly in my lifetime and arguably in history. It was multifaceted but included a number of enhanced protections for travelers with disabilities, particularly those using mobility devices. In brief summary, four main components.

It ensured that the rule set new standards for the design of onboard wheelchairs. Secondarily, it was regulation that made damage or delay of a wheelchair or other assistive device an automatic violation of the Air Carrier Access Act. It mandated that individuals with disabilities received prompt assistance when getting on and off of the aircraft. Then it also ensured that airline staff and contractors are required to undergo annual training to ensure that they are properly handling not only the assistive device equipment but are also properly supporting the people with the disabilities themselves as they deplane and get onto the aircraft.

All to say, a really phenomenal historic protections out of the Biden administration. As you mentioned, I believe it was just last week this group of airlines, five of the largest airlines in the country, let's see, Southwest, JetBlue, Delta, United, and American Airlines, so really five of the largest commercial carriers, came together to issue this lawsuit, as you mentioned. None of the airlines themselves were willing to provide statement or haven't up until this point, but the group that filed the claim or filed the lawsuit, I'm sorry, made a statement and called the new requirements "unnecessary and an overreach."

Frankly, I read this in this legal action to be a real slap in the face to the disabled community, a community that has, talk about unnecessarily, has had to navigate unnecessary damage to our equipment and to our dignity for as long as commercial air has existed. As recently as 2023, over 11,500 wheelchairs and scooters were mishandled by commercial airlines. That's more than, on average, about 950 plus pieces of equipment each and every month.

I, myself, have personally had my chair absolutely totaled by commercial airlines three times in my life, and that's not to mention all the times that it's come back with scratches and nicks and scrapes and individual pieces of the equipment damaged, but absolutely totaled three times. That is not uncommon. I feel like each and every person I know that is a mobility device user that travels commercially in air travel has had similar damage to their equipment.

All in all, to say this is an ongoing, obviously, lawsuit and legal challenge, but really amounts to a really disappointing action by the airlines, again, at a time when feels like the bare minimum has not been met, ensuring passengers', again, dignity and safety first and foremost.

WELLS: Thank you. One of those people that have had that problem was me. A couple of years ago, my chair was destroyed on a flight to LA, and then back again, it was damaged even further. I wanted to ask you a follow-up, if that's okay, to your comment about that. Can you describe the process that people with personal wheelchairs have to go through when flying? I know we covered that a little bit, but if you can go into more detail, that would be great.

VOORDE: I can only speak from my perspective and what I do in order to prepare for and then to fly commercially. Again, as you mentioned, I am a wheelchair user. I use a manual wheelchair, but it has power-assist wheels. The chair is about 50, 60 pounds. It doesn't fold, and so, obviously, these are all aspects that go into consideration, you would hope would go into consideration by the airlines when they're thinking about how to properly and safely stow my equipment.

What does the process look like? Traditionally, when I book a flight, all airlines ask you, at the time of booking, if there are any accommodations you need. It's at this point that I indicate that I'm going to need assistance getting on and off the aircraft through the use of an aisle chair, and also that I'm bringing my own chair that will need to be checked at the plane side, at the gate. Some airlines, not all, but some ask for the weight and for the dimensions of my equipment. I personally don't mind having to give this information because I hope at least that prepares them a little better for, again, being able to properly and safely stow my chair.

Then some airlines will even follow up after the ticket has been booked. Will reach out and ask clarifying questions or confirm that I'm bringing my own chair again and that this is the situation and what I can expect. Then day of I personally am able to navigate the airport, so I go through standard TSA and security, get to my gate, and then I usually check in with the gate agent. They issue me a tag that goes on the back of the chair for tracking purposes. It also traditionally or typically lists the specs of the chair again, so the type of battery and the weight.

Then I am usually one of the first to board the plane, roll down the jet bridge, and then plane side right at the mouth of the plane, the door of the plane, transfer into an aisle chair. It's at this point that I am then no longer with my equipment until I land and deplane at my destination. You know all too well, it sounds like, Lindsey, how unsettling and unnerving this can be, not only being away from your equipment, but then having the very real fear of not knowing how that equipment is going to be returned to you.

Again, I have had countless experiences of getting off that aircraft and then doing a quick assessment of my chair, maybe seeing as something as "small" as a new scratch or the material, the upholstery of my chair having a small rip or tear, or something larger like it literally not functioning, not rolling. My most recent equipment damage occurred in October of 2023, and I literally wasn't able to roll the chair at all. The frame was so bent that it precluded the wheel from being able to go around. We could talk about this all day, but in that moment, it is such a loss of dignity and independence and mobility. I am non-ambulatory, so that is literally my means of independence and transportation.

It's just absolutely asinine. That's something that is so preventable. Continues to occur time and time and time and time again for thousands of travelers. This last equipment damage, like I said, October 2023-- or I'm sorry. It was February of 2023. I'm sorry. I didn't get my equipment back for nine months. I thankfully had an old chair that I keep for just this reason that is very old, and I'm grateful and so privileged that it works, but does not fit me very well anymore and is pretty creaky. That I used for those nine months until my chair was replaced. Again, they had to get me a brand-new chair.

Again, we can talk about this all day, but the process is really cumbersome and dehumanizing, demoralizing, which all goes back to my reaction to airlines saying, "Oh, this is an unnecessary, overly burdensome overstep these regulations are." My response to that is it's unduly burdensome and unfair and unjust that our equipment needs to be damaged in the first place. Anyways. It is obviously an ongoing situation, but I have been really thinking about how this legislation and how the potential threats to this regulation could impact my decision to travel in the future.

WELLS: Was this lawsuit a total reversal?

VOORDE: Great question. It is my understanding the Department of Transportation in the Biden administration or under the Biden administration went through the entirety of the rulemaking process in advance of this regulation, which as some of you might know, is a very involved process. Involves multiple opportunities for public comment, including from, in this instance, the airlines and from consumers and from anyone, there's an open comment period. That period occurred in 2024 in advance of the announcement of the final rule. It's my understanding that the airlines contributed to this rulemaking process that they provided comments.

Again, they are not in opposition to the entirety of the rule as it stands but just take umbrage with aspects of it. As far as whether it was a surprise or not, I guess I would say, cynically, I am not all that surprised just because of the ways in which time and time and time again, historically, people with disabilities' rights and dignity have been challenged and threatened when they are flying commercially. Part of me is not surprised that the airlines are unwilling to meet the high standard that is being set for them under this new rule. At the same time, the standard that is being set very high, to me, it ensures basic dignity and protection for consumers.

It's a raising of the bar in a way that we have not seen historically, but it is, in other ways, the bare minimum. People with disabilities are just being asked to be treated with respect and are asking that when they deplane in their destination, as paying consumers, as paying airline travelers, that they, with confidence, can deplane and that their equipment will not be damaged or destroyed. If it is, that the airlines respond expediently to ensure that their equipment is repaired, replaced, and that they receive a loaner in the interim.

That, to me, does not seem like that big of an ask. To answer your question, cynically, I'm not surprised that the airlines are pushing back, but I would say I'm disappointed. Disappointed for the 12+% of Americans that have a mobility disability and have to consider the threats to their safety and to the safety of their equipment when they choose to fly, whether that be for work, for leisure, for family, for fun. That we have to take the safety of our bodies and our equipment into consideration in this way.

WELLS: This is a very good topic to discuss with our listeners. I have a question about the research and development and mandating that people with personal wheelchairs be able to drive onboard airplanes and remain in their wheelchairs during the flight. Where do you think the airlines are on with that and the research and development aspect of it?

VOORDE: I admittedly haven't looked into where the R&D is super recently. I know that it is an ongoing project. Part of the December 2024 rule was ensuring that that research continue expediently. While that is ongoing, it is going to take time. I think especially to be done right and to be done well, it's going to take time, which in some ways is understandable. It necessitates a change to the engineering and to the structure of commercial aircraft.

Again, to tie this all together, I don't think that one piece of this rule excuses the damage that can and will occur in the interim. Continued research and development on bringing wheelchairs on board is not a box that airlines can check and say, "Okay, we're working on this. In the meantime, it's not our fault that equipment is getting damaged or destroyed."

I don't mean to be flippant about that, but I think it can be a both-end situation, that research, that development can continue, and simultaneously we can and should be looking to ways for staff, for contractors to be trained to properly handle that equipment to the best of their ability to ensure that equipment isn't damaged. Again, that feels to me like a very reasonable ask.

WELLS: Wheelchairs and other equipment are bound to be damaged sometimes, but how can passengers educate themselves on their rights as passengers, and what can they do if their equipment is damaged during that flight?

VOORDE: Absolutely. The Department of Transportation during the Biden administration put out a Bill of Rights under the Air Carrier Access Act that describes the fundamental rights of travelers with disabilities. That can be found, you can Google Airline Passengers with Disabilities Bill of Rights, it can still be found on the DoT, the transportation.gov website. That outlines and helps empower travelers with disabilities to know what their rights are when traveling.

Then, as you know, Lindsey, the process for reporting damage is in and of itself onerous for the traveler with a disability. To take you back again to this, like painting a picture of what happens, if I deplane and my equipment is damaged, I begin the process of filing a claim with the Department of Transportation and with the airline. Depending on how severe that damage is, I can at times take my equipment home and continue to use it and wait until that repair is able to be made if my chair is still operable.

There are other times in which, again, in the times my chair has been totaled, I'm not even able to-- again, thinking about getting from point A to point B, literally not able to roll myself out of that airport. I would encourage, and it's something that I've continued to do, even though that process is onerous, continuing to report, continuing to file claims if you have legitimate grounds that your equipment has been damaged.

I have started to take pictures of my equipment. Of course, it's going to be pretty beat up. I use my chair all the time and I've had it now for a number of years and so, of course, it's going to have nicks and scratches. Those aaren't things that happened at the hands of the airline, or certainly not that I'm trying to pin them for, but if my equipment comes back and the upholstery is torn and it wasn't when I turned it over to them, or one of my breaks is bent, or something that happens often at-- What am I trying to say? The screws in a caster are suddenly loose or something like that.

If I have proof, so to speak, that that was not how I sent my equipment to the airline when I got on the plane, taking the time to file that claim and to hold the airlines accountable. One, I think because it ensures accurate data collection by the Department of Transportation as they continue to monitor the prevalence of this damage, but also it ensures that our equipment is not being unduly damaged by the airlines. Again, it's added onus and administrative onus for us as travelers with disabilities. I think that is our right and I think it helps to remind the airlines that so much can be done to prevent this damage, to prevent it from happening in the first place.

WELLS: Very quickly, I was offered a $20 voucher for the damage of my wheelchair. Talk about no dignity at that time. I'd like to ask you your response in another piece of news along the same with-- going along with airlines. Following the crash of a commercial jet and a military helicopter in January, President Trump claimed, without evidence, that the Department of Transportation's hiring of people with disabilities caused the fatal incident outside of Washington DC. Again, there's no evidence of this, but we wanted to hear your thoughts generally on the impacts that these kinds of comments have on employment opportunities for people with disabilities and outside of government.

VOORDE: Absolutely. The comments made by the administration following the tragic January plane crash, to your point, were baseless, were incredibly damaging. They caused harm and I feel like put a target on the backs of people with disabilities, federal employees with disabilities. People with disabilities, both inside and outside of the government, are hired because they meet the qualifications needed for their job. What we know for absolute certain is that federal employees, employees of the FAA are held to really meticulous standards in advance of being hired.

This implication that those standards were made less rigorous under the Biden administration or under the Obama administration is, again, baseless. I think it really unfairly and inappropriately utilizes a tragedy to advance this narrative that people with disabilities, that anybody that qualifies or falls under this DEI umbrella, this DEI culture war, is less than or less qualified. Again, I think it was just incredibly inappropriate of our leaders to use this moment to put a target on the backs of employees with disabilities who are in no way less qualified than their non-disabled colleagues.

WELLS: Thank you for that. We're recording the interview today, March 3rd. We want to ask you about the proposed cuts to Medicaid that President Trump and Republicans in Congress are pushing. Last week, the House passed a budget resolution that paved the way for these possible cuts to move ahead. We don't know what will happen between now and when this interview airs on March 12th, but really briefly, what would these cuts mean for people with disabilities across the nation if they go through, and what are your concerns?

VOORDE: Thank you. It's a really terrifying time to be an American with a disability. I think that these Medicaid cuts are a large part of that. The budget resolution adopted Tuesday by House Republicans does not explicitly name cuts to Medicaid, but legal experts, healthcare experts say that there is simply no possible way that these $880 billion in spending cuts could not touch Medicaid. In response, lawmakers have said, "Well, these cuts will simply be an attempt to minimize or to eradicate fraud, eliminate fraud in the Medicaid program.

There is absolutely no data to support the claim that fraud is more prevalent in Medicaid than it is in Medicare or in private insurance. Again, it's just a really misdirected, misguided, and I think some ways, frankly, not in some ways, in big ways, a cruel attack on a community. I think anytime you are rolling back funding, cutting services, it takes a certain level of cruelty and disconnect with the American experience and with your constituencies, because these cuts have the potential to impact millions of Americans who rely on them for life-saving healthcare, for support in their communities and in their homes. I think, appropriately, Americans with disabilities across the country are really scared of what these cuts could mean.

I am not a Medicaid recipient myself, so I cannot speak personally to the fears that I have, but I have spent the past several weeks just trying to listen and take in the stories of people I know, strangers, people online who are talking about the really tangible, insidious ways in which this funding is going to impact their lives and risk their life and livelihood. I am just really afraid for our community, and I've been trying to take this time, like I said, one, to listen, and two, to contact my representatives and just try to amplify those stories.

I think numbers like $880 billion, that can feel so amorphous, like what does that even mean? Being able to tie those cuts to, again, specific stories of how lives and livelihoods are going to be threatened can be powerful. Trying to amplify and communicate those stories to my elected officials.

WELLS: I want to jump in a time machine and go back in time a little bit. We mentioned at the top that you worked for Pete Buttigieg's presidential campaign.

VOORDE: I did.

WELLS: Your connection with him actually goes way back to when you were in high school. You met him when he was running for mayor of South Bend, Indiana --

VOORDE: Yes.

WELLS: -- where you grew up. You volunteered for his campaign and then interned in his office for a summer in college, right?

VOORDE: I did.

WELLS: What were the experiences like that for you as a young person with a disability, first, and what do you think each of you learned from one another?

VOORDE: Oh, great question. Yes. Mayor Pete, as I know him, first ran for mayor of our hometown when I was a senior in high school. He came not to campaign, but to speak to our government class. I remember even as a 17-year-old, hearing him speak and just thinking what a powerful role model and leader he was. Not because he was the smartest guy in the room, which he is, I think we can agree in many rooms that he finds himself, but because he doesn't act like the smartest guy in the room. He is so empathetic and knowledgeable, but takes time to listen, explains things in ways that don't feel like he's talking down to you ever, but is just so committed to service and to supporting his community, whether that be the community of South Bend or the community of the American people, has such a servant's heart.

Seeing him win, not one, but two terms as mayor, having a chance to work with him in his office as a 20-year-old intern, and then keeping up and then moving back to South Bend as a 27-year-old to work on his presidential campaign was just an absolutely incomparable experience just to be in the presence of such a strong leader and incredible human being, and to be able to contribute even in a small way to his work.

I have learned a lot from him. I think first and foremost is just to try to ignore the noise, ignore the chatter, put down Twitter, put down X, put down the headlines, and just do the work. Critics can be very loud. Naysayers can be really loud. Even your supporters can be loud sometimes, and that can be distracting, albeit in a good way. Being able to just tune out the noise, the chatter, and just put your head down and do the work, that is what I've learned from him, I think, first and foremost.

What he has learned from me, I feel so grateful to have been brought on, first, as an intern, but then in the role on his campaign, and trusted to do good work, and never asked to prove myself because I was a person with a disability. Instead, he and his team found ways to leverage the skills that I had and the lens that I had as a person with a disability to benefit the entire work, the entire movement. He, I think, does an incredible job of surrounding himself with good, smart people that are issue-area experts.

Having him come to me at times during the campaign and say, "Hey, am I getting this right? Am I saying the right thing? What do I need to know about being an ally to people with disabilities?" In the small ways I was able to, I hope, inform his work and his approach. I'm just incredibly proud to see what an ally and advocate he has been, continues to be for disabled Americans. The thought that I influenced that, even in a small way, is absolutely humbling. Just grateful to have had that chance, again, to contribute.

The last thing I'll say is I so appreciate Mayor Pete, Secretary Pete, because he never makes you feel like a token. I wasn't just there because I could help inform him about issues of disability and accessibility. Instead, he saw me as an expert in education, an expert in policy, a strong political operative that just so happened to also be able to contribute on issues of accessibility and inclusion. Grateful for his continued service and example, and have absolutely no doubt that-- I don't know what the future will hold, but I look forward to seeing the ways in which he continues to shape the next several decades of the American story and has no hesitancy in the good that he has done and will be able to continue to do.

WELLS: Thank you. That's amazing. I have just a couple quick more brief questions for you. Then we jump back in the time machine and we fast forward to when you are tapped to be the Associate Director of the Office of Public Engagement in the Biden White House. What was it like going from being an outsider to then serve in the administration? What do you learn about yourself as an advocate for being in that role?

VOORDE: It was a surreal experience. I don't know that I have fully processed it, and it's three or so years already in the rearview mirror, but it's still in some ways, in many ways, surreal that I had the chance to serve my community, the Americans with disabilities, in that way. Particularly given the legacy of that role in administrations of past. Having mentors and role models like Rebecca Cokley, like Claudia Gordon, like Maria Town, like Leah Katz-Hernandez, having held that role in the past and being able to look to them and stepping into those shoes, it's such a standing on the shoulders of giants, as they say, and is all I can say about that.

Just an absolutely humbling experience. I learned so much each and every single day. I think what an opportunity like that teaches you is that you are in ways at the top of your game, a role that I could have only dreamed of, and yet there was still so much I didn't know. I was challenged each and every single day to find nooks and crannies of our community, of the disabled experience that I didn't know about or for which I had room to learn and to grow.

If at any point I felt like, "Oh, I'm reaching everybody," there's no way, it's not possible. Really challenging my assumptions about disability, about civic participation, about how we reach Americans where they are, talking about issues that matter to them in ways that are accessible. That is something that I was learning on and that I was chewing on, that I was reflecting on each and every single day when I stepped into the EEOB.

I've heard it said that, this absolutely incorrect assumption, that people with disabilities tend to be apathetic about politics or about government or about civic engagement. That is a fallacy for more reasons than one but in particular, it makes an assumption that pathways to engagement with government, with the White House are accessible. If they're not accessible, of course, you can't expect people to be engaged, because they can't.

I came in to work every single day doing what I could to ensure that the most marginalized, the person for whom the process of engaging with the executive branch was the least accessible, doing what I could to reach them. I knew that if I was doing that each and every single day, that I was doing the best I could with the time that I had in that role. An absolutely humbling experience. One that I wouldn't trade for anything, and certainly one that I am forever grateful to have been contributed to an administration that did a lot of good for Americans with disabilities.

Now seeing some of that being stepped back or being threatened only lights a fire in me even more so to use my voice to, again, share stories, to contact my representatives, to do what I can to ensure that that progress continues.

WELLS: That leads me into my final question of the day. Given the current political climate, as an advocate, and you were a young advocate starting in high school and probably before that, what would you tell a young disability rights advocate who wants to get more involved in disability advocacy about the current attacks on Medicaid, long-term services in sports, et cetera, what would you tell them about how to become an advocate or how they need to proceed in these critical times?

VOORDE: Really good question. I would say, and I do say, I do tell young advocates all the time to never doubt the power of their voice and their experiences. That is something that can never be taken away from you. When I was younger, I thought that I needed to accomplish something or have a certain degree or have a certain title next to my name in order to be like a reputable advocate. I thought that it would take like, "Oh, in order to have a little oomph behind my name, I need to have done something."

In actuality, your lived experience as a person with a disability, that is all the credibility that you need to get started in your voice, your ability to tell your story, to talk about the injustices that you experienced, to talk about the joys, the ways in which funding and support and community integration have made your life stronger and better. Being able to tell those stories, that is something that you don't need anybody's permission to begin doing. You don't need to have reached a certain milestone to be able to do.

On that same point, there are matters of disability policy, many of which we've talked about today. Ending the sub-minimum wage, Medicaid and Medicare funding, home and community-based services, all of these things. Disability policy is also accessibility and inclusion in any space that you can think of. If you love the arts, or if you are a realtor, or you're an educator, or you're a doctor, or you have interest in space, whatever it is, big or small, applying that lived experience of disability and that lens, so to speak, of disability, you have such an immense potential to make any space that you inhabit more accessible, more inclusive.

To just never forget that you don't have to explicitly, specifically be a advocate that instead you can use your voice, your story to shape the spaces in which you inhabit that could feel in ways like they're worlds apart from capital D Disability policy. Any space in which you exist can be made to be more inclusive, more accessible. Never doubt that.

WELLS: That was my conversation with Emily Voorde, the founder and CEO of INTO Strategies. Her website is intostrategies.com.

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells for another edition of Disability Rap.

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