RARE Daily

Why Flying with a Wheelchair Is a Civil Rights Issue

January 11, 2024

Despite existing laws and regulations intended to protect the rights of people with disabilities to fly on airlines, travelers with wheelchairs and medical equipment face obstacles to enjoying the freedom of movement others take for granted. Neglectful handling of equipment, lack of training, and failure to adequately accommodate these travelers have led to a public call for airlines to do more to recognize the rights of people with disabilities. We spoke to Global Genes’ Director of Community Engagement Daniel DeFabio and Founder and President of The Jansen’s Foundation Neena Nizar, about the challenges disabled airline passengers face, what the law says, and why this is a civil rights issue. You can find Global Genes’ Open Letter to improve airline accessibility here.

Daniel Levine: Nina, Daniel, thanks for joining us.

Daniel DeFabio: Good to be here. Thanks for having us.

Neena Nizar: Yeah, thanks for having us.

Daniel Levine: People love to gripe about airlines delays, bad services, lost luggage, but for people with disabilities, air travel can be a true nightmare. There are laws and regulations requiring airlines to accommodate people who are disabled. Daniel, perhaps we can begin with the state of air travel for disabled passengers. How accommodating are airlines to the needs of these passengers?

Daniel DeFabio: Yeah, I guess I’d have to say not accommodating enough, not by nearly enough. From my personal experience with my son in his wheelchair, and from the stories I hear in the rare disease community, it’s very limited efforts to accommodate and they seem to be very rooted in ableism, the idea that you should be able to get from your chair to your seat as an able-bodied person would, or even—not to diminish someone else’s situation—but even if your wheelchair use is because of, let’s say, paralyzed from the waist down—that’s a different set of needs and abilities. And the assumption must be, from the airline point of view, something like you need the wheelchair when you’re walking, but when you’re in our seats, you’re not walking so you don’t need it. And that’s one of the reasons I wanted to introduce the rare disease component. So many people with rare diseases may rely on a mobility device or a wheelchair or other medical equipment while traveling on a plane. And I think it’s a chance to say, this isn’t just a wheelchair, this is the wheelchair that helps for a number of things, not just as the alternative to walking. It holds your head in the position you need. It holds your chest in the position you need to be able to breathe. So it’s not just get these people into the standard airplane seat. And that would be great if they could solve that part of the problem, but even that part of the problem isn’t solved very well.

Daniel Levine: For people with a rare disease this is not just a small inconvenience on the way to Disneyland. They may depend on air travel to get to a conference, to see a medical specialist, or participate in a clinical trial. Daniel, as you’ve interacted with the community on this issue, what do you hear from them? How significant a concern is this?

Daniel DeFabio: Yeah, it’s a great point that as a sort of basic human right, civil right, we should all—if Neena or I or our families want to get to Hawaii, we should be able to do that on a plane. But that’s a leisure activity. But we do have these sometimes medical needs to get to a certain hospital or a certain clinical trial. That was certainly the case in my own family. We were in a clinical trial in the NIH in DC and we ended up a couple of times doing it by plane, but ultimately decided we needed to do that by driving because it was too risky to travel by plane. So, in my family it became a real chilling effect that we grounded ourselves. We decided never to endure. The lack of accommodations of getting Lucas into a seat and a seat that could support him seemed almost impossible. But we’ve heard yes from a lot of people in the community that—just recently over 200 people have told us at Global Genes—have told us they have this kind of experience, these negative experiences with their travel because of usually a wheelchair, but maybe some other medical equipment too. One family said their child’s wheelchair was delivered to them when they deplaned in a box—the pieces, several different pieces, like it was supposed to be an IKEA assembly or Lego assembly. And a number of people told me how they won’t use their primary wheelchair when they travel by air, which is great if they have the option to use a less expensive chair that they can take more risk with. But how sad is it that that’s the assumption we go into this—that we have to assume the wheelchair is going to be possibly lost, damaged, destroyed. And so, we’re working around it.

Daniel Levine: Let’s bring Neena into the conversation. Neena, you and your sons have Jansen disease, a skeletal dysplasia that causes progressive growth plate abnormalities. What’s the impact of the condition on you and your son’s mobility?

Neena Nizar: Yes. So, Jansen’s affects every bone in our body and it makes mobility extremely difficult. So my boys and I, we depend on a power wheelchair, which is a customized wheelchair to travel, and so it does make airline travel very difficult. But before I talk about some of that, I want to really go back to some of the things that Daniel said in the beginning. So the question about airline travel really is a fundamental human rights discussion, and there is the Air Carrier Access Act and this describes the fundamental rights of air travelers with disabilities. And it is a bill of rights, which was implemented July 2022. And this is a federal regulation and the bill of rights actually consists of almost 10 different rights that all carriers and airlines have to abide by. And the fundamental of those is the right to be treated with dignity and respect when we fly. And along with that is the right to receive information about the kind of services that are on offer when we sign up for a flight. What are the airline’s capabilities? What are its limitations? I have had an experience where a few hours before, no, the previous night before a flight I was called and told that I wouldn’t be able to fly because my wheelchair would not fit on the airline. And imagine my shock to know that there are certain stowaway sizes and my wheelchair would not fit, and I had already bought the ticket and I was going to speak at an event and they said that to me. So, the right to receive information at the time of buying your ticket is a fundamental right in this bill of rights. And again, the right to receive information in an accessible format is also important. And the accessibilities within the airport facilities, a lot of us in the rare disease space as well as people with disabilities, we fight for being included in these spaces. Many of us don’t even realize that these are fundamental rights that we’re fighting for. It’s not just a feel good thing or a good Samaritan kind of feel good thing to do. It’s a basic human right that is afforded to us by these bill of rights that have been codified by federal regulation. And this again covers service animals traveling with assistive devices, having assistance onboard the aircraft, and also having certain seating accommodations. Nobody really understands that we have that opportunity to talk to the airlines, say that the seat will not accommodate me and I need to be able to be moved up either to the front or to have more leg room. Many times, I have traveled with my boys after surgery and they have not been able to sit on a regular seat. And in those circumstances, if the plane has available seating and arrangements, they should be accommodated. But they have all these stipulations that make it extremely uncomfortable and undignified because they make such a big deal about it. They have these rules where you can’t put things in front of you for takeoff and landing, but with people with disabilities, you’ve had surgery and your legs are just sticking out in front and you can’t bend them and you need a pillow or a cushion or a support. Those are accommodations that are needed and we have the right to those accommodations.

Daniel Levine: I know that there was one incident where you were sitting on the plane after you had landed and actually was watching your wheelchair on a conveyor belt being offloaded. What happened?

Neena Nizar: Yeah, it’s the horror story of basically your nightmares. Every time we travel, I make it a point to record my wheelchair just so that no one will say, well, it was broken or something like that. So I always take pictures of my wheelchair and as it’s being loaded into the luggage compartment below the plane, they put it onto a conveyor belt. And as when we landed, they were taking it off, it fell off the conveyor belt, and now this is a really heavy wheelchair. This is like nearly a 350 to 400 pound wheelchair. And they did not have the right equipment and they did not notice that someone had turned on the conveyor belt and there was no person holding the wheelchair as it came off the conveyor belt. And it just fell right off and it broke. And many times, we have said no matter how much we explain how to take care of it to the people who are putting it on the plane, we don’t really get an opportunity to talk to the people who are offloading the devices. And that’s where there’s a lack of training, there’s a lack of accountability. Some of these airlines use third party vendors, so they may not have their staff that are offloading baggage. And no matter how much they say that everyone is trained, airlines have so much turnover, especially in these areas, that they just cannot keep up with training everyone and they mishandle, mistreat, they don’t have the right equipment. I’ve seen guys down below where they say, don’t worry about it. We’re strong. It’s a macho kind of talk where we’re going to carry this off, don’t worry about it. And I’m saying this is dangerous for you and for everybody around you as well as for the wheelchairs that can get damaged in this process of machoism. So, I think there’s a long way to go for us as people with disabilities to be able to travel with dignity, with making sure that our wheelchairs are not damaged when we arrive and get stuck in the airport. I mean, just like Daniel said, my kids, they don’t want to travel. We don’t go on vacations where we have to use an airline because it’s so stressful, it’s just not worth it. And so, if I ever think about going on a vacation and I tell my children, they’re like, let’s just go to the park nearby or something like that. They don’t want to fly because it’s traumatic. It’s very, very difficult. And the fact is people around us, like the common people who are just sort of viewing this from an external lens, they don’t really understand why we are upset. They don’t understand why we are demanding to be treated in a certain way. My kids have actually heard from others on the plane saying, call the police on them. They’re holding up the plane and they’ve been so worried. And they were 11 and 8 at the time and they were so worried they really thought their mom was going to be arrested because I demanded that my wheelchair be treated with respect and they had broken it and I was livid. So it really impacts the other travelers. It impacts the airlines taking off on time for their next flight because we’re stuck. We’re stuck on that jet bridge and we can’t move.

Daniel Levine: Let’s talk about that. People who don’t live in this world may think it’s not a big deal. There are wheelchairs all over the airports. They can give you a loaner. How specialized a piece of equipment is your wheelchair? And when damage like this occurs, what does it take to get a resolution?

Neena Nizar: Let me give you an example. We had damage to my son’s wheelchair last June. His foot plates were damaged and broken by Southwest Airlines. Until today, it hasn’t been repaired. That’s over a year and a half now and we still haven’t got the parts for it. So it really is very important for people to understand this isn’t about hopping off one cart and using another because your cart is faulty. You can’t move around. He has been improvising with makeshift plates and makeshift devices to use his wheelchair to go to school and other places. It’s not convenient. And my boys, their bones, they bend. If they’re not supported, aligned properly, they can have lots of long-term disability and impact from such a situation. So it’s not easy. And that’s what airlines really depend on because they’re very good with saying, yes, file a claim and we will cover it. Airlines have a lot of good ways in which they’re able to keep this out of the news because they pay for your repairs, but they don’t realize that the repairs can take up to a year, a year and a half, sometimes two years. Sometimes the wheelchair is discontinued, so you can’t get a certain wheelchair again and your body is used to one wheelchair so changing it is very difficult. So, those are some of the long-term nightmares that we have to face. And the other thing is that even if we have to repair these wheelchairs, there are not enough vendors and companies that are nearby that can come and run and do this really quickly for you. We have to go 40 minutes to drive out to get our wheelchair assessed, and many times they will call, email, follow up. I mean, this can take months to even set up a schedule where someone’s coming to assess the damage.

Daniel DeFabio: Yeah, I have to agree fully with Neena on this. I think many people, if they’re not exposed to this world, may not realize some of these wheelchairs—it’s definitely not ‘let’s just get you a temporary’ chair situation. For many of us, it’s they can be $20,000 to $40,000 pieces of equipment that have been literally custom molded to your body and to refit you to a different chair means repeating that custom molding and measuring. And in the best of circumstances, it will take months to get these appointments. It would be a bad analogy to say if your car was in the shop, that’s an inconvenience. But you could get a rental car and you’d be relatively overcoming that inconvenience. But for so many of us, there is no temporary fix until you get the real fix. And then like Nina said, that takes a long time and it takes maybe the airline’s paying or maybe your insurance has to pay. And most of us are on some kind of assistance where you can get a wheelchair every so many years, maybe five years or maybe more time in between. So these losses are really significant when they’re damaged or destroyed.

Daniel Levine: Danny, you’ve spoken to a number of people about this issue. How unusual is Neena’s experience?

Daniel DeFabio: It’s not unusual enough. Apparently it happens about 29 times a day that a mobility device is damaged on an airline or 10 to 15 thousand times a year. And we know this because a DOT policy was passed, I think in 2018, that said, airlines have to now disclose these numbers. So that’s what we know since 2018. So, it’s far too many people, and it’s, again, the obvious example of the easy to see and capture on video example is the wheelchair. But I want to mention also that there are other people with different rare diseases that may have to carry their equipment, which may not be anything to do with mobility. It may be a breathing apparatus for cystic fibrosis. It may be liquid medicines that exceed the number of ounces of liquid that are typically allowed on a plane. But these things are allowed for medical purposes and yet the airline staff don’t necessarily know that or appreciate that or accommodate that as they should. And so, we also hear from people that are told, your carry-on has to be checked and they say, no, these are vital medicines that I need in the next three hours of this flight. And they’re not accommodating that the way they should be.

Neena Nizar: And also, there are stipulations for having a companion providing a certain type of assistance. Like for example, you could have a reader for a passenger who is blind or who has low vision, an interpreter for somebody who’s deaf or hard of hearing, or even a safety assistant if the passenger has a disability and cannot assist themselves. These are all under the DOT Bill of Rights that I spoke about. But a lot of travelers don’t know about this and airlines, like Daniel mentioned, airlines do not inform patients who are traveling that these are things that we can actually avail. The other thing I wanted to mention about the numbers of reported damages. Because we’ve been doing this for quite a while now, it’s really important to mention to your listeners if they’re applying to travel that the numbers do not reflect the reality. because unless you file a complaint with the DOT through this different website and link, your damage is not being registered. So simply filing with the airline—the airline asks you to go down and make a claim after there’s a damage. And when you go down and make a claim, you are just making a claim with the airline. Now the airline has up to a certain amount of time to respond to you. Now in that time, once you get over your traumatic experience and have some peace of mind, you need to go online and make a DOT claim and say what happened, and write out all of these details. Once again, however, if the airline responds to you within a certain timeframe, and it doesn’t mean that they have repaired your device, it’s enough just for them to say, yes, we acknowledge our error and our mistake. We’re so sorry for the inconvenience. Here’s what we are going to do. And the minute they say that they’re off the hook. So the DOT report that we then type up and write up doesn’t get counted because they have acted within the timeframe allotted by airlines. So often two things are happening. Travelers with disabilities don’t know to make that claim in DOT. And second, sometimes even after making that claim, if the airline has responded in a timely manner, they are not getting counted as damaged.

Daniel Levine: Neena, you’ve referred to legislation a couple of times. The Americans with Disability Act includes transportation. There’s also the Air Carrier Access Act, which includes rights for disabled passengers and responsibilities for carriers. Is there something missing from existing laws? Is it an implementation problem? Is it an airline attitude problem?

Neena Nizar: It is the accountability piece. There is no way that any of us get compensated for any of these damages. All airlines are liable for is repairing the damage. It doesn’t matter how many days we went without our wheelchair, doesn’t matter if I did not have the ability to get to work and I have loss of pay. It doesn’t matter if I missed my appointment or wherever I needed to be, and therefore I lost a lot of money in the process. There is no law that says we have to be compensated. Now here, that is exactly where the gap is, and that’s what the ADA and people with disabilities have been fighting for a long time, is to make the airlines more responsible and accountable in a financial monetary way. Now, we just recently heard that when COVID happened and there were lots of flights canceled, that there was a big fee and fine that was levied against them. And so, when there is some kind of financial accountability, I mean, we cannot sue an airline for any kind of damage, no matter, even if they ended up breaking our legs or anything in the process. It’s not a suable offense. So that is the crux of this issue. If we can find ways in which they can become financially accountable for some of their wrongdoings, then I think we’ll see a different story. For now, it’s enough to say sorry for the inconvenience, we’re sending a tech over and that’s it. They’ve done their job, they can go on with their life. It doesn’t matter at all to them.

Daniel DeFabio: It’s interesting you brought up both the ADA and the ACAA and one of the key differences, as I understand it, is other modes of transportation—trains, buses, subways—have to comply to the ADA. But because the ACAA predates the ADA and it dealt with airlines, the thinking I guess at the time was, oh, the airlines already have their system. They have their policy, so they have this older policy that is less enforceable. I think one of the key differences Neena mentioned is if it’s an ADA violation, you can sue and that puts some teeth into the process. Whereas the ACAA, there’s no recourse to sue. And what do you know? The compliance or the accommodation is much weaker in the airlines. No other mass transit mode says to a person in a wheelchair, you must abandon your wheelchair to travel with us.

Neena Nizar: Right, exactly, or we don’t have lavatories that are accessible. If we’re looking at it from a policy perspective, those are things that we definitely need to rally around to change.

Daniel DeFabio: And when Neena mentions the bathrooms, we hear so many people that rely on wheelchairs that travel by air that dehydrate themselves for the day prior. So, they will not need to get up if it’s an eight hour flight. They do not have the ability or it’s not worth the risk to get up out of their seat and use these tiny little airplane bathrooms.

Daniel Levine: The Department of Transportation says if your rights are violated, you should speak to a complaints resolution official. This is an airline employee who’s an expert on disability accommodation issues. Have you had any experience dealing with these airline representatives? Have they helped resolve a problem?

Neena Nizar: Yes, they have. But again, it’s all lip service. We’re really sorry this happened. This should never have happened. Exactly. It should never have happened three months ago. It’s happening again today. It’ll happen again tomorrow. Nothing changes. On my last experience with United where they really destroyed my wheelchair and then gave me a loaner in the meantime while they got repairs done, the airline complaint officer did contact me, and the manager of the airport did contact me too. And at the time I said, you need to retrain your staff. And she asked, what kind of training should we be giving them? And then we talked about having probably people with disabilities like myself go in and speak to them. And then I thought, which industry does that? Putting the burden of training your staff on the people who you have impacted? Where in your training manual does it say that you will get people who you have wrongfully harmed come to train? I find that ridiculous. They need to set money aside. They need to be able to hire accessibility and disability professionals to come in and work with them, and they have to get equipment. There are airlines like United Airlines who don’t have the wheelchair cart that allows them to safely put wheelchairs on board an aircraft. So, they are carrying them, these monstrous wheelchairs, which are so dang heavy, they’re lifting them up to put them in the aircraft. I mean, that’s a recipe for disaster. You cannot invest, it’s probably $1,000 or $2,000, to get one of those wheelchair carts, but you would like to get somebody with a disability to come and tell you that?

Daniel Levine: Zach Wichter of USA today has been doing a lot of reporting on this issue and bringing national attention to it. He told the story of one disabled woman in Ireland who had to crawl off her flight. Nina, what’s air travel like outside the United States?

Neena Nizar: That’s a really great question. I was in Vancouver a couple of months ago for a talk, and I was really very, very surprised and impressed with their service to people with disabilities. I mean, their whole terminal had a dedicated walkway and a dedicated counter for people with disabilities, not like the ones you see in American airlines, but it had a nice lounge and it had so many comfortable seating options and they came and they talked to you personally. I thought that was wonderful. I’ve never seen that anywhere before. And they’ll talk to you about different ways in which they would accommodate you on the flight and what you needed. So I think that it can be done and there are models out there that we could emulate. I just think that, ultimately, there is no accountability. They do not care whether they are impacting us. I’ve actually had people on an airline tell me that I travel too much. Maybe you shouldn’t travel too much. And I was so shocked and horrified. I had no words to respond. I was shell shocked. I mean, how dare you tell me what I should be doing? It’s none of your business. If I want to travel for work or if I want to travel anywhere, that’s my business. So yes, I think it’s a whole culture shift along with having that. When you are the last person to deplane, and you are the first person to get on and the last person to deplane, and you’re sitting in the airport hours after everyone has left and you are still in the airport trying to figure things out, you know that they have not thought about people with disabilities.

Daniel Levine: Daniel, do you hear anything from overseas travel than you hear in the U.S.?

Daniel DeFabio: Well, I’m glad to hear Neena had a good experience with a Canadian flight, but I did see maybe you have too, a recent television news from the CBC, their show Marketplace, which followed a woman with a rare disease and she also had a trach or a ventilator in addition to her wheelchair. And that’s another aspect I want to bring up when we talk about rare disease as a subset of maybe wheelchair users, because it’s not just the seat with wheels, it’s the seat that holds maybe your breathing tube or your food tube or your colostomy bag or whatever else that is medically vital to you gets wrapped up into this chair experience. And a transfer is a complicated thing. So, in many situations, if someone is going to assist you in transferring from a wheelchair, they need medical training to do that. I would hazard a guess that none of the airplane staff have this training, and it’s not an easy transfer in the best of circumstances—in your home, for example, with maybe an aid or a Hoyer lift or things to help you—when obviously in a confined space you have limited options. But it is not going to be an easy transfer for somebody into these airplane seats. So to go back to your point, Danny, if people did check out that Marketplace special from the CBC, they would see at least one example of Canada’s version of these problems.

Daniel Levine: Let me ask each of you, what advice would you give people with disabilities about how they can understand their rights and become better advocates for themselves with airlines? Daniel, how about you start?

Daniel DeFabio: Some of it is knowing that bill of rights that Neena referred to, that’s a great first step. There is a little bit of maybe a baby step in the right direction when Nina mentioned not being told until the last minute that her particular airplane couldn’t accommodate her size of chair in their cargo hold. First of all, that shouldn’t be the case, but unfortunately it is, and it is all too often. And somewhere there’s a little bit of hope on this front as some airlines are now publishing in advance which airline airplane models have which size cargo holds. But that’s great because you can be informed in advance. And the idea here is that you would select a different flight because that particular flight can’t take your wheelchair. But this is putting the problem back on the people who are most vulnerable. To say, again, in this sort of ableist attitude, you need to fit our equipment, not our equipment needs to fit you. And even our cargo hold can’t fit you. So it’s maybe a tiny step in the right direction, but it’s not ideal.

Neena Nizar: Yeah, I mean, much to what Daniel said, I think it’s really important that we do not stop traveling. It’s that vicious circle of, well, people with disabilities don’t travel, so we don’t need to make these accommodations, but we’re not traveling because they’re not accessible. So it’s a vicious cycle. So the more we do travel, the more we will be forcing them to make the accommodations and give us the rights that we deserve. So, I think the first thing is like—I’ve heard from several people with disability that they don’t want to fly. I myself, I’m so over it. I’m so angry that I will, I insist on flying and I’ll fly the same airline just to see if they got it right again or they’re going to make it a mess. And so, I have that spirit in me, but not everybody does. But it’s important that we show up. that we are seen, because the more of us that travel, the more they’re going to take that as a challenge to get it right. Again, if you encounter something on your flight, you do have to document it. Now we are in the age of social media where you can pick up the phone and take pictures and have proof, and no one can distort your story because they always do with people with disabilities—try to make us seem like we’re crazy and the stereotype is always out there. So we have to break those stereotypes and we have the ability to do so with our devices and other social media platforms. So, I think that the more we raise our voices, it’s going to be really important because then when you make that change, that will affect the next generation. So, if you encounter a problem, for sure, speak up about it. And I know that going down and making that claim and writing the DOT—it takes a lot of your time and you are so exhausted and so tired. And like Daniel mentioned, if you have other medical [issues], you need food or you need to change your bag out, all those things, it becomes so difficult to go down. And I’ve heard so many people say, I didn’t even bother about making the complaint, it’s so much of a headache. But please make the complaint because we need those complaints and we need those DOT complaints as well. And keep that in mind as you are setting out on your flight. Daniel’s point about picking the right flight is so important. Like Delta, for example, Delta doesn’t have as many aircraft that are accessible because of the age of their aircraft and the type of aircraft. Their storage for wheelchairs and their onboard wheelchair storage is also very, very difficult. And it’s smaller spaces. So, you really need to call them and make sure, and even if they say things like, yes, we do accommodate, ask them specifically whether it’s a power wheelchair, and if you have other requirements, make sure that you ask them, what are some of the things that I can? What are my rights as I travel with a service dog or I’m vision impaired? What are some of my rights? Just make sure that you know all of this before getting on board a plane.

Daniel Levine: There are many rare disease people who don’t live in New York City or Los Angeles. How available are these planes that are designed to accommodate them in smaller cities?

Neena Nizar: I live in Nebraska and Omaha, and we don’t have as many different airlines that fly out of here. And so we really are at the mercy of the flights that do leave out of here. And it’s hard because we always have to have at least a minimum two flights to get anywhere. So those layers, those changing flights is always very burdensome. And so yes, to your question, not many. So if you are in a rural part or you’re not in these big cities, you are going to be stuck for access.

Daniel Levine: Daniel, you’re leading an effort within Global Genes to raise awareness about this topic. Global Genes has posted a petition online and it’s seeking signatures from the rare disease community. Who is the petition for and what action do you want them to take?

Daniel DeFabio: Well, I’m glad to say so far, about 720 or more people have signed on to that. Initially, we just wrote it as an open letter and the community saw it and said, could you please make this a petition and can we add our names to it? So we did that. And of those, about 200 have indicated that they have a personal experience like this, a negative experience traveling. But who is it for? We’re hoping we did tag some of the legislators who have been working on this issue. It got good passage in Congress, the House, but not yet in the Senate. And initially, our first piece on this was to amplify what the muscular dystrophy group was doing to call people to engage with their legislators, to urge the passage of this. So that was one aim. But of course, we’ve also tagged the airlines in our social media. If we can get the attention of the right person at the airlines, maybe that makes a difference. Maybe it embarrasses them or maybe it plays on their sense of moral justice and the press too. Zach Wichter, as you mentioned, has been a great ally on this issue. I was glad to connect him to not only Neena, but Sean Baumstark from Two Disabled Dudes, and I’ll continue to send him some of these rare disease stories. As I said, I am passionate that this issue is not only the broad issue of all people in wheelchairs, but the specific examples of rare disease people included in that conversation. So maybe a best case scenario would be someone from an airline contacts us and says, unfortunately as Neena pointed out, why should it be put back on us to come up with the solutions, but at least they would be listening to some of the right people in the conversation. So that might be a possible good outcome here.

Daniel Levine: And where can people go to learn more or add their name to the petition?

Daniel DeFabio: Yeah, the easy way is to go to global genes.org and then search airlines. But if you want the precise URL, it’s global genes.org/blog/whycantpeoplewithrarediseaseswheelchairsflymajorairlines So I know that’s a mouthful. I would just search airlines when you get to Global Genes.

Daniel Levine: Global Genes Director of Community Engagement Daniel de Fabio, and founder and President of the Jansen Foundation Neeina Nizar. Daniel, Nina, thanks so much for your time today.

Daniel DeFabio and Neena Nizar: Thank you, Danny. Thank you.

This transcript has been edited for clarity and readability.



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