The Hidden Costs of a Disability

Katie: Welcome back to The Money with Katie Show, Rich Girls and Boys. I'm your host, Katie Gatti Tassin. And today we are discussing the hidden costs of living with a disability. Unlike many other minority groups, this is a group that any person can join at any time and will likely be part of at some point in their lives, whether through an accident, an illness, a genetic condition, or the inevitable process of aging. 

Disabilities can be visible or invisible. They can completely change your life, or only impact certain aspects of it. But we often don't discuss the costs associated with living with a disability. There are the obvious costs like healthcare and accessibility devices. But there are also costs that accompany outfitting a home properly, paying for care and assistance from a human, if necessary, as anyone with an aging parent or a child with a disability knows. The challenges of mobility and transportation, if the disability is physical, and more. And because this is not a topic that I have firsthand experience with, Jenny Burke and Kelsey Ibach of The Inclusive Traveler are joining me today. Jenny and Kelsey run an accessibility-focused travel community that spreads awareness about living with a disability. We'll be right back after a message from the sponsors of today's episode. 

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Katie: Jenny, Kelsey, welcome to the show. Thank you so much for joining me today. 

Kelsey Ibach: Thanks. 

Jenny Burke: Thanks. 

Katie: Absolutely. So on The Inclusive Traveler, y'all talk a bit about visible versus invisible disabilities. Can you share more about what that generally means, as well as the role that identity plays in this distinction?

Jenny Burke: Yeah, absolutely. So a disability is any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them. So by definition, that includes both physical and mental conditions. But most of society associates a disability with something that they can visibly see, like a wheelchair user, missing limbs, a blind person, et cetera. But there are so many invisible disabilities like autism, ADHD, MS, a chronic illness, OCD, dyslexia, just to name a few. So since many people who might have those invisible disabilities probably have never considered themselves in that category, they may have internalized ableism.

So ableism is when a society, a system defines an abled person as the standard and normal. And anyone who does not fit that standard is believed to be lesser value and not as worthy. So for me personally, I was diagnosed with ulcerative colitis in 2011, and I never considered myself as having a disability, because it wasn't something you could see. So it wasn't until recently that I've started to go on this journey to really tap into that side of myself, because I think a major thing was when I learned that ulcerative colitis is an uncurable disease. I'll have it for the rest of my life. It was very awe jarring moment that it's something that I really should lean into a lot more and not ignore, like I had done so much in the past. And I'm so thankful for the people that I've met in the disabled community. 

Katie: You just heard from Jenny Burke, one of the co-founders of The Inclusive Traveler. Jenny and I met three years ago when she was an OG Money with Katie reader, and her co-founder, Kelsey, had a really catastrophic experience when she was in her twenties and she was courageous and vulnerable enough to share that with us today. Here's Kelsey on the embracing of her identity as someone with a disability. 

Kelsey Ibach: While Jenny has an invisible disability, I have a visible disability. And so a lot of our experiences are different, but in many ways they're the same. And I think it's important to note when we're talking about identity as it relates to disability, it often, from an outside perspective, may come with a negative connotation. And something that I think it's really important that we get across to the listeners today and the non-disabled community is that most disabled people are actually proud of their disability and proud to call themselves disabled. We believe that the biggest hurdle is not necessarily being the disabled person or our disability themselves, but that we live in an inaccessible society. 

Katie: And living in a world that wasn't designed for you can come with steep costs. Kelsey, who uses a wheelchair, describes some of these costs. 

Kelsey Ibach: So I became disabled at age 25 pretty unexpectedly, which means that my life was basically turned on its head overnight. And because I had never really planned for having a disability, especially this young in my life, it meant that I needed to make some major changes. And that came with a price, right? So I all of a sudden, overnight, needed to find accessible housing. I currently live in Chicago; I lived in Chicago at the time, and that meant finding a building with an elevator, which often means that it comes with a higher price. There's those high-cost amenities that you get with an elevator building here in Chicago. Larger space meant that it was a higher cost of rent. I needed a custom-fit wheelchair, which cost thousands of dollars to get. I racked up medical supplies costs just to be able to go to the bathroom, to be able to shower. And you'd be surprised to find out that most insurance companies don't cover those ancillary costs. Even though they're technically medically necessary, they don't say that it is. So a lot of this was coming out of my own pocket. I needed accessible transportation to and from my physical therapy appointments, doctor's appointments, and I think I spent close to $100,000k my first year out of the hospital just on maintaining a similar lifestyle to the one that I had before.

And then getting to all these new appointments that I had in my life. Now also keep in mind, because of this was an unexpected disability due to an accident, I also was out of work for the better part of a year. And because of how young and naive I was, I hadn't signed up for long-term disability. So I was completely out of an income after six months, when my short-term disability ran out. 

And not only that, I work with a financial planner now to kind of have a more forward-thinking approach. I've learned my lesson, right, because I know that while I've become extremely independent with my disability now, as I age, I know that I will start to lose some of that independence, which means that I'll have even more costs as my life moves on.

Katie: So Kelsey highlights two things here. The first is that her health insurance didn't cover much of the housing accessibility retrofitting that she required. They denied her first attempt at getting her wheelchair covered, even though she physically could not walk. The other financial takeaway, long-term disability insurance. Some employers provide this as a benefit; others don't. But it's worth looking into your own benefits package and getting a policy if you can afford to. The paradox is that those least able to afford long-term disability insurance are often those who would need it most if their income went away. They're the ones that have the least slack in their system. And as we've covered on the show before, health insurance in the US can be pretty difficult to understand. Kelsey spoke to that too. 

Kelsey Ibach: I also have an education that allowed me to push back on some of these costs to navigate the healthcare system that I had, you know, friends and family that would sit down and help me navigate these new costs, bills, insurance claims. But for a lot of folks, that's not the case. And it's a really, really, really tough world to be thrust into. 

Katie: And thrust into it she was. As I alluded to before, Kelsey shared her story with us. It is pretty hard to hear. So here's Kelsey on the accident that changed her life. 

Kelsey Ibach: So at age 25, I was out at the bars, just like most mid-twenties people are, and I was celebrating a friend's birthday that night. Decided that, you know, we were gonna call it a night, get into a cab. This was even before Ubers, so I'm dating myself a little bit. But a friend who had been working at the bar that night offered myself and a few other friends a ride home instead. So a few of us got into his car while the others took a cab. And because he had been working that night, I was under the assumption that he had not been drinking. I of course found out later that I was very wrong. So we only made it a few blocks before we hit an embankment at high speed, fell over the embankment, landed upside down on train tracks below. And I immediately knew that something was wrong. I couldn't feel anything from my chest down. I wasn't necessarily in pain, but I just knew something was not right. I had to have my friends take me out of the car 'cause I couldn't, of course, get up and walk myself. And the driver of the accident actually fled the scene without calling 911.

Thankfully there was a Triple A driver nearby that had seen the whole thing. And so he had called an ambulance and I was eventually rushed to the hospital to find out that I had broken five vertebrae, seven ribs, broken pelvis, and a collapsed lung. And I needed to go into an immediate emergency surgery. And right before I rolled into surgery, the doctor came in to tell me that I most likely will never walk again. That I had a spinal cord injury affecting my movement and feeling from about the bellybutton down. And that my life…something that always stuck with me is that he said, “This is a life-altering event, not life-ending event.” And I think that I used some of that to power me through what would be the next few weeks, months and years of my life.

So I spent about a couple weeks in the ICU, followed by three months in an overnight rehab facilitation, learning how to do things like get dressed, sit up, use a wheelchair, cook food—you know, do those day-to-day activities that we kind of take for granted. But in those few early days, I never thought that I could travel, that I could have kids, that I could date, that I could work, that I could live independently, I could drive. And now eight years later, I do all of those things without thinking about it, and then some. And that's a huge reason why Jenny and I are so passionate about our community. It's trying to show the highlights of having a disability and what that looks like. 

Katie: We'll be right back after a message from the sponsors of today's episode. 

Sponsored content: We've recently partnered with TaxAct to create a custom episode of The Money with Katie Show, all about changes you should be aware of in tax season 2023. The full episode is up on our YouTube page, but we're also going to be playing excerpts during our other episodes for the next few weeks in lieu of traditional advertisements. Here's a little bit of my conversation with TaxAct’s VP of tax operations, Mark Jaeger. 

Let's talk about some common tax season misconceptions. First of all, my favorite: extensions. If you file an extension, what exactly does that mean? 

Mark Jaeger: Yeah, so you have until April 18 here in 2023 to file your tax return. Now, what an extension provides you is an opportunity to wait to file that tax return until October 15, depending on if it falls on a holiday or a weekend, really a weekend. So with that, what the misconception is that, “Well, because I filed for an extension, I no longer need to pay my tax liability until October 15.” And that is 100% untrue, right? The IRS and the federal government still wants their money, right? And they want their money on time. So the April 18 deadline for this year still requires you to pay what you're going to owe for the year. 

Katie: I hope you enjoyed that excerpt from our conversation. Now back to our regularly scheduled programming, and as always, happy tax season.

I was struck by Kelsey and Jenny's optimism and determination to take something they both love—travel—and show how it's still possible despite challenges. Kelsey spoke to taking things for granted, and I immediately pictured my own typical travel day. Lots of standing around and walking and moving in tight spaces on an airplane, and then navigating an unknown destination. And I realized how much I take that ability for granted. Here's Kelsey on deciding to travel again after her accident. 

Kelsey Ibach: The biggest consideration that I had when deciding to travel again after becoming disabled was the amount of time that it takes that goes into planning. So, you know, even something as simple as booking a hotel room. Beforehand, I was typically just going onto, you know, Marriott's website and finding the best available price and hotel room. You can do it all there from your computer. There's plenty of websites or hotel websites that don't even have the accessibility option. I have to pick up the phone and call. So I'm constantly following up to make sure that even if I can book via the website, that I'm following up and making sure that it truly is accessible, that they have the stuff that I need, that the doors are wide enough, that there's a chair in the bathroom for me to take a shower, those sorts of things. I'm constantly planning ahead in my itinerary extra time to get to certain tourist attractions or places that I need to be. 'Cause oftentimes city transportation isn't always accessible. So that means that I need to bake in more time to get there with a cab or an Uber, or arrange some other mode of transportation. 

Katie: Though another thing that I found so inspiring about this conversation was the levity that Jenny and Kelsey brought to a heavy topic. 

Kelsey: There are some cost perks to being disabled. So we've found traveling together that you know, a lot of tourist attractions are free for people with disabilities, for either themselves or themselves and their companion. We also found in Paris that all the bus, public bus transportation was completely free for people with disabilities and their companions. So while the train was completely inaccessible for us to get around, we often use the buses because they were free and accessible. 

Katie: To me, this highlights an interesting angle of city planning. Examples like these, accessible free transportation for those with disabilities, shows where relatively small changes can have a big impact on the ease with which people can get around. 

Jenny: There was trains like the Eurail to go from London to Paris. We took that; we were able to get business class for only the cost of a coach ticket. So that was another benefit, if you will. And we were always the front of the line for different attractions that we wanted to go to. We went to Versailles. I forced Kelsey to go to the Harry Potter Platform 9 ¾ with me and we got to go to the front. So those are again, like a few little things that were positive. 

Katie: But remember how I brought up airplanes? For people who use wheelchairs, flying can be a pretty stressful and potentially expensive activity. 

Kelsey: Now I wanna also point out one thing that I'm extremely passionate about when it comes to air travel and the costs there. So while there isn't necessarily a higher cost to pre-board or to book a seat on a flight, something that we're seeing consistently in the wheelchair community is we technically have to leave our chairs behind as we board a plane, and those get stowed underneath the plane. And you can imagine, if you've seen what happens to your luggage under the plane…

Katie: Oh gosh.

Kelsey: …what can happen to wheelchairs while stowed under the plane with untrained folks that are putting them together, folding them, taking them apart. So I think in the US alone, 26, I wanna say it's roughly 26 wheelchairs get completely damaged every day. And that means that some folks are out of their main mode of mobility for months. 

Katie: Oh my god. 

Kelsey: 'Cause like I mentioned earlier, these are custom-fit wheelchairs. We can't just be put in these chairs that they give you at the airport. You know, we're at risk for pressure sores or they're so heavy that our shoulders don't have the power to propel them forward. We completely lose our independence without our wheelchairs. So that's a huge thing that we're advocating for in the disabled community, is to have better accommodations so that we don't have to leave our chairs in the hands of untrained employees. 

Katie: Again, something I had never considered. Kelsey and Jenny's videos on The Inclusive Traveler highlight accessible destinations and travel companies, but they also bring a fair bit of humor to their travel reviews. One such video rated public restrooms in Europe and how accessible they were. And I shared with Kelsey and Jenny that the video made me chuckle, 'cause I have—and this is perhaps TMI, but we're all friends here—something that I jokingly call bathroom anxiety. When I feel anxious or nervous, my stomach hurts and then I feel like I need to go to the bathroom. But just being in a place where there is no bathroom can sometimes be enough to trigger that anxiety. And Jenny, who as we've mentioned has ulcerative colitis, jumped right in. 

Jenny: On the bathroom anxiety, you're talking to the right person, because part of ulcerative colitis is like, it's an inflammatory bowel disease. And so in a flare-up, I can't control my bowel movements. There could be a time that I would go to the bathroom 12 times in one day. So when we're talking about travel, where you're saying I have anxiety if I'm on a long bus, there's not a bathroom, I have anxiety leaving my apartment or like leaving a hotel, not knowing if there's a bathroom that…especially in Europe, a lot of bathrooms, you have to pay. Like if it's a public bathroom, you have to pay. So have coins on you. If they have toilet paper…some don't have toilet paper. Am I gonna make it to that place in time? So I won't eat potentially for like a full day if I'm in a flare-up, 'cause I wanna avoid that. 

Katie: So I asked Jenny and Kelsey, how can we all advocate for better policies and accommodations to make the world around us a little bit more accessible? Especially considering that most of us will be part of this minority group at some point in our lives, whether temporarily or permanently. 

Jenny: So in the workplace, if you have the ability in your HR system to self-ID that you have a disability, very important to do so. Most of it will be private, so it doesn't necessarily have to be shared with your manager, but if for some reason you do want to request accommodations, having that data there is super important. And it's a stigma that employers might think that an employee requesting accommodations would be really expensive and a big hassle, but most of the time it's less than $500. So it's really cost-effective, and putting positive things in place can affect other people, other allies who don't have a disability. 

Katie: One such example of this, in almost every place I've ever worked, I've had someone on my team who suffered from migraines. And in almost every case, the migraines were totally debilitating, sometimes lasting days at a time and making it nearly impossible for that person to leave a dark room, let alone stare at a screen and work. If you've ever had a migraine, you know how challenging it is to deal with. And sometimes migraines can be triggered by certain lighting. And if you're working in an office with fluorescent lighting, requesting an accommodation to replace the lighting near where you sit or moving your seat to an area with lighting that's easier to adjust is a simple and low-cost solution. Jenny also mentioned that her disability can be triggered by periods of high stress and anxiety, and that having a manager who was patient and understanding really helped to improve her quality of life and experience at work. Jenny and Kelsey also spoke to mobility accommodations in public spaces. 

Jenny: When you're walking on a sidewalk, curb cuts are technically not legally required in some cities, but it's a hindrance for some people who can't go on the sidewalk. But you can think about, it makes a positive impact for other people as well as more easily move around. Like if you think about strollers, or if you think about someone with low vision. 

Kelsey: I also think when we're speaking of accessible infrastructure, I think there's a stigma too that old historic buildings can't be updated to meet the needs of some physical barriers. But we even found in Europe, some of the old buildings have been retrofitted with elevators and they can hide them away, technically, if you'd like to. We went to the Palace of Versailles; there's plenty of elevators. They of course did not have that back in the day. Yeah, I think that there's a stigma that it's too difficult to make these changes, too difficult to speak up. But I think it's important that even as people without disabilities, that if you see something, say something. Now, when you go into a bar, a restaurant, you know, a store and you're seeing that there's a lip to get in, or maybe that the workers are illegally parking in the disabled parking stall, you know, say something, because disabled people are often get fatigued on being the only ones bringing these issues up.

So as you're learning more about the community and how it benefits, like Jenny said, not even just the disabled community, but helps other folks. You know, the curb cutout being one of 'em for moms with strollers, I think it just has a positive trickle-down to other groups as well. 

Katie: Jenny had some final thoughts to share that I think are worth including. 

Jenny: I would say that it's super important to have allies, and we just wanna encourage people that you can still go travel, you can still go do a lot of fun things that you wanna experience just because this is happening, your disability is either permanent, situational, temporary, you can still live a very full life. So we just wanna make sure that we're encouraging people to do that. 

Kelsey: And when asked if you want the long-term disability, say yes.

Katie: I am so thankful that Jenny and Kelsey joined me to talk about these things that I have very little direct personal experience with, but know are very important financial and honestly human considerations.

All right y'all, that is all for this week. I'll see you next week, same time, same place, on The Money with Katie Show. Our show is a production of Morning Brew and is produced by Henah Velez and me, Katie Gatti Tassin, with our audio engineering and sound design from Nick Torres. Devin Emery is our chief content officer, and additional fact checking comes from Kate Brandt. And don't forget, if you enjoyed the excerpts from today's episode of my conversation with Mark Jaeger from TaxAct, to visit my YouTube channel to hear the full conversation and learn even more tips to help you file confidently this year.