On this episode of National Disability Radio we sit down with author Jules Sherred, who wrote the cookbook “Crip Up the Kitchen” about how he rediscovered his love of cooking after finding a way to make it accessible. Then we are joined by Natalie Alden from Disability Rights Florida, who speaks about her experiences traveling as a person with a disability. Finally, Stephanie tries a new joke format.

See more of Jules’s writing, including where to purchase “Crip Up the Kitchen” at https://julessherred.com/

Full transcript of this episode is available at https://www.ndrn.org/resource/ndr-december23/

Transcript:

Is that our cold open? I thought it had to be longer than 30 seconds.

Michelle Bishop:

Well, welcome back to National Disability Radio, NDR. Woo! Jack, put an applause in there. Woo!

All right, so welcome to our amazing holiday special. Happy holidays, everyone. At this time of year, there’s what, at least 20 different holidays going on? So whatever it is that you celebrate, happy holidays. I am one-third of your hosting team, Michelle Bishop. I’m the Voter Access and Engagement Manager at NDRN.

Stephanie Flynt:

And I’m Stephanie Flynt, Public Policy Analyst at NDRN, and I’m also one of your co-hosts. And you know what I can’t stand? The “All I Want for Christmas Is You” song by Mariah Carey. If I have to hear that song one more time…

Michelle Bishop:

Stephanie coming in hot. How could you say that? It’s a classic!

Stephanie Flynt:

The people need to know how I feel.

Michelle Bishop:

I don’t know that they do. Oh, no.

Stephanie Flynt:

Yes, they do.

Michelle Bishop:

Do not send hate mail to podcast@NDRN.org, please. But while we’re on the topic, I think “Santa Baby” is creepy. Anyway, Raquel, take it away.

Stephanie Flynt:

It is though.

Raquel Rosa:

Hey, everyone. This is Raquel. I am back from being sick. So for the better or worse of it, I no longer sound like Marge Simpson and her sisters. And I’m Team Stephanie; I also don’t like “All I Want for Christmas Is You.” And if you want to send hate mail, the email is raquel.rose@NDRN.org.

Stephanie Flynt:

Yes!

Michelle Bishop:

You know what? That’s it. Cut recording. Cut recording. I’m too upset. I can’t go on because I love that song. Jack, well actually, first, Jack, introduce yourself as our producer and then just go ahead and just cut. This episode’s canceled.

Stephanie Flynt:

No. Tell us your opinion on “All I Want for Christmas Is You,” okay?

Jack Rosen:

My opinion is that I’m Jewish. Hi. Producer Jack Rosen here. And since this will be coming out the week of, wishing all of our listeners a happy Hanukkah.

Michelle Bishop:

Yes, happy Hanukkah to you, Jack, and to all of our listeners. So this is our big holiday special. So what do we have on tap, Jack? Who do we have for this episode?

Jack Rosen:

First up, we have Jules Sherred, who is a cookbook author from Canada. He wrote about how he rediscovered his love of cooking and made the kitchen accessible to him. And Raquel, who is our spotlight story today?

Raquel Rosa:

Well, we are in for a treat. We have Natalie Alden from Disability Rights Florida. She’s going to talk to us about traveling while disabled.

Stephanie Flynt:

Well, first and foremost, Jules, we are super excited to have you on our podcast today. How you doing?

Jules Sherred:

I am doing great and I’m excited to be here too.

Stephanie Flynt:

Awesome, awesome. So I guess my first question for you, especially somebody who also really has a love for cooking as well, something that I’m super passionate about, how did you rediscover your love of cooking?

Jules Sherred:

What happened was for a long time because of how my disabilities progressed, I could not cook. And I used to spend five-plus hours cooking for myself and people that I love. It was my joy and the way I would de-stress. And so I watched a video of another cookbook author using an Instapot and talking about how Instapot had helped her manage cooking with rheumatoid arthritis and parts of my disability mimic rheumatoid arthritis. They’re very similar in how they work as far as pain and inflammatory responses and mobility issues.

And before that, my exposure to the Instapot was people telling me how much I needed one and then 10 minutes of them ranting about all the things that they hated about it. And I’m like, “That’s not a way to get me to use the tool,” but I saw this person actually talk about things. I’m like, “Wow. That, I need.”

So I got one and instantly it revolutionized my cooking and made cooking accessible to me. And then I started to experiment and develop recipes specifically for the Instapot as well as play with other tools that able-bodied people typically poo-poo and act like they are not good tools that are amazing for disability, but no one ever talks about them in terms of an accessibility device. They all just either talk about how they don’t like it or how it makes somebody lazy to use something like this or they don’t understand why this tool exists.

And so just over time, I just began to play with things. And as I developed my blog, Disabled Kitchen and Garden, I wrote a post one day with my favorite accessibility tools in the kitchen, and then some people in the comments left their own things that they use in the kitchen that they use not as prescribed. And an example of that that I talk about in my cookbook is an egg multi-slicer that can also be used to chop things like strawberries and mushrooms with soft skin and stuff like that. That’s how it all started.

Michelle Bishop:

So Jules, I have to ask because I am a spoonie myself, and if our listeners aren’t familiar with the idea of spoonies, we are disabled people for whom chronic pain is a regular part of our disability experience. I know that’s something you talk about in your work. And so I was wondering what does replenishing your spoons look like for you and how is that something that you’re able to prioritize, that kind of self-care, in a society that puts such a heavy emphasis on productivity and some of those really ableist kind of ideals?

Jules Sherred:

My go-to is doing flat happy on the couch with my dogs. Flat happy is not really napping, though it’s supposed to be napping, but it’s just lying down, cuddling with my dogs, watching something on television, doing something that requires absolutely no effort and no thought because my spoons are both fatigue-related and pain-related. And as people who deal with both, they know that is a circular, that’s the word I’m looking for, is a circular process where your pain makes you more fatigued and your fatigue makes your pain levels higher and you have to cut that circuit.

So I do things that require absolutely no effort and just make me happy. But that’s just my number one is just vegging out and doing nothing and feeling great about doing nothing. Even reading requires too much energy to do, so it’s all about things that I can do passively and boost my serotonin and hormone levels.

But to go even further than that, I have a system where I check in with my body three times a day and I base my activities off of what my body is telling me I’m at. So I assess my spoons when I begin my workday, I assess my spoons again at lunchtime, and then I assess them a third time at the end of my workday. And the goal is to have one spoon left at my end of my workday. And if I find that I only have one spoon left at my lunch, then I’m done for the day and I do some type of self-care.

And the reason for that, and I found, and this is how I was able to get over, because for the longest time, I was like, “You have to work, work, work, work, work, work, work. You have to overcome, you have to power through. If you don’t, you’re lazy,” all that ableist messaging, I found that I started to keep a journal of all the times I would stop working when my body told me to and how productive that made me compared to when I would just plow through. And I could see that taking breaks when my body said, “Take a break,” even if I was technically on a time sheet working less hours, I was actually getting more done because I wasn’t making mistakes, I wasn’t spending two hours on a task that would normally be 10 minutes if I was feeling better. And that’s how I’m able to be like, “Wow, so this actually works.”

And then I started to notice that all the self-care time that I would have to take throughout the week equaled one full work day. So I started taking a four-day work week and I’m even more productive now that I’m doing a four-day work week, and I understand that is a privilege that I have because I am self-employed. So my advice is if you have that capacity or that ability to set your own working hours and be flexible, I highly recommend doing less work time because you’ll end up doing more in that time that you are on the clock, so to speak.

Michelle Bishop:

Thank you, Jules, I really appreciate that because cooking, which we’re talking about today, requires spoons. So does entertaining for the holidays, so I love that that’s something that you think about and integrate into your work. And for any of our listeners who maybe aren’t familiar with spoon theory, we can put some links for you in the show notes so you can learn more.

Jack Rosen:

And another thing that cooking can require for some people with disabilities is accessibility. I know that’s something you touched on in your book, so I’m wondering how did you incorporate universal design into this cookbook?

Jules Sherred:

When I was creating the cookbook, I tried my best, with the help of beta readers and other disabled people, talking with them, having conversations about what are their most common points of failure in the cooking process. And so one of the things that I did is I created recipes that address those points of failure and eliminated them. So some examples of that are complete equipment lists because for people who have different types of cognitive dysfunction, the process of trying to figure out what they need to cook together with equipment, that step alone can take them upwards of two hours, and then they forget something and it derails them during the cooking process, and then the food gets ruined, and then it’s a whole snowball effect.

I also simplify the instructions so that there’s no hidden steps because that’s another stumbling point. The way that ingredients are listed is also done with universal design in mind, but there’s also some how to organize your kitchen that consider both mobility issues and cognitive impairment, simple things. And again, this is having to overcome… That’s not the word I wanted to use. That’s a horrible use. Pushing back against those ableist messages that your house needs to be super neat and tidy and everything needs to be put away. And if it’s in sight, it’s cluttered and you’re a bad housekeeper.

The fact is, if you keep something in sight, you’re more likely to use it, you’re going to save spoons. And so I recommend your frequently used utensils and small appliances, you keep those things out at the point of performance. So it’s all about your point of performance, eliminating steps so that you’re not having to work as often, and things like doing food prep so that you’re only having to do it a couple times a month instead of that once-a-week food prep that people espouse that’s a recipe for you just to throw everything in the bin because you have no energy to cook that stuff that’s all chopped in your fridge, completely filled in Tupperware containers.

So those are some examples where I looked at not only the common stumbling blocks, but also the common symptoms of disabilities. So instead of focusing, say on arthritis or MS or ADHD or autism, I asked myself, what are the common symptoms? Pain, fatigue, cognitive dysfunction are the three main ones, but there’s some others that I address in the cookbook as well, and how do we create strategies and techniques to, again, cut that circuit of what causes all those things to flare up, and create strategies to support those rather than frustrate them.

Stephanie Flynt:

Yeah, no, that makes a whole lot of sense and thank you so much for talking about the tools and being able to organize those and those various techniques.

Another thing that I’d love to address is the low expectations portion of it and just being nervous about cooking. When you hear about cooking, and it’s like we were talking about a little bit earlier prior to this episode, it’s such a broad thing. And so when you think of cooking or when some people think of cooking, especially when you’re looking at low expectations that the disability community is subjected to or even just, “What if I can’t do this because of how I’m feeling today?” So I was wondering if you could offer some advice to disabled people who are interested in starting to teach themselves how to cook or even just learning how to cook in general.

Jules Sherred:

My first recommendation is to start small. I’m going to tell a story that has to do with confidence and creating healthy attitudes around food and how this works in Canadian culture, and I think it’s taught to some degree in American culture. But the sooner that you teach a child to cook and give them independence in the kitchen, the more confident they become because they have these little wins of I look at this thing that I made on my own, a sense of accomplishment, and it just boosts your self-esteem. Cooking, having the independence is a huge factor when it comes to mental health and self-esteem because you are winning, you are creating some type of, “Wow, I made this thing.”

So it’s about starting off small and setting yourself up for success and ignoring the things that may dissuade you from doing that. So don’t chop all your vegetables. Buy pre-chopped vegetables from the frozen food section because they’re actually healthier than the vegetables that are in the fresh food section because frozen food is flash frozen at the time of picking; fresh vegetables are dying and losing nutrients as they sit in that area. So you’re actually being kinder to your body by going to the frozen food section and you’re saving money. So that’s a barrier that you can eliminate.

Find recipes for, again, the Instapot, one of the reasons why I love it is because you can just dump a bunch of ingredients in it, put on the lid, set a timer, and you have succeeded in making yourself a delicious meal that has taken you no effort. There’s one recipe in my book that makes a delicious coconut tomato soup and it’s like five minutes. You open up a can of diced tomatoes, you add some onion, and you add a spice mix, you set the lid, and you’re done. Easy-peasy and you’ve made yourself delicious soup. I think there’s like eight servings of it and it’s an easy, quick win.

I think those are the biggest things. Start small and do what you need to do to eliminate the barriers that typically get in the way, and a lot of that for disabled people has to do with how much time it takes to prepare meals. Even something like using a meal kit is overwhelming because sure, all the vegetables are chopped for you, but you still have to stand at the stove for half an hour to one hour. And a lot of us do not have that capacity either because we literally cannot stand and a stove is too high to use in our wheelchair or we have some type of pain condition that prevents us from doing something “that simple.” And I have “that simple” in quotation marks like air quotes because it isn’t that simple.

Stephanie Flynt:

Oh my goodness. Thank you so much for sharing that with us and now I’m really hungry, so also thanks for that. But seriously, that is super, super helpful. And I know for me personally growing up, I definitely found a lot of those things super helpful. When I was a kid, I would make things like salsa in the kitchen and I’m so grateful that my parents encouraged age-appropriate exploration in the kitchen, so I love that you spotlighted that.

Michelle Bishop:

Well, we’ve talked about some pretty serious disability stuff, which is what we tend to do on this podcast, but this is also our holiday special, so we were wondering if you have a favorite holiday recipe you could recommend for us.

Jules Sherred:

In my cookbook is a recipe for air fryer potato scones and mashed potatoes scones. So the reason we typically make them, they’re a Scottish recipe that come from my Scottish heritage on my maternal grandmother’s side, and you make them with leftover mashed potatoes, and leftover mashed potatoes is probably a word up here like, “Jules, that does not exist. What are you talking about?” But you are making mashed potatoes anyways for the holiday meals, so make an extra half a bag or something and intentionally make those leftover mashed potatoes.

And a scone, for people who don’t know because it’s kind of like a biscuit, biscuits are cookies in Canada, they’re a hard cookie. It’s not that scones and biscuits are the same, but they’re very similar. But the thing with this scone is that it’s a dessert scone and you serve it hot fresh out of the oven and you slather it in butter or margarine or whatever you want to slather it in, and then you pour maple syrup, hot, warm maple syrup on top of it, but you could also do jam on top of it is another really good thing.

But it’s a dessert scone and if you wanted, you could also make it savory by if you have any bacon bits left over from either making your stuffing or your Caesar salad or whatever, you can throw some bacon bits and some chives or green onion, the greens on the green onion in there and make a savory version of it. And it is delicious and you really wouldn’t think that you put mashed potatoes in something that is supposed to be served sweet, but trust me, it works.

Michelle Bishop:

I love mashed potatoes. That’s my favorite thing to have at Thanksgiving. So you’re speaking directly to my soul right now, Jules. I will put mashed potatoes in any recipe, so I’ll be sure to go check that out.

Jack Rosen:

Well, Jules, you’ve given us a lot to think about. You’ve also made us a bit hungry or at least speaking for myself there. Thank you.

Michelle Bishop:

Starving. Absolutely starving right now. Definitely about to eat some mashed potatoes. Sorry, Jack. Go on.

Jack Rosen:

No, it’s fine. Thank you for taking the time to meet with us today and where can folks find more of your stuff?

Jules Sherred:

First, it’s been a pleasure being here, and if you want to go to julessherred.com, J-U-L-E-S-S-H-E-R-R-E-D dot com, you can find information to buy my book, Around the World. I also have a blog and there’s links to my social media and my other websites and everything. It’s like my online author hub is the best place to go.

Jack Rosen:

We’ll be sure to include that in the show notes. Thank you so much for joining us today, Jules.

Jules Sherred:

My pleasure.

Raquel Rosa:

All right, everyone. It is holiday time. We’re talking turkey, we’re talking Christmas, we’re talking menorahs. So now we’ve got people who are flying to visit family and friends, and this experience also includes people with disabilities. Today we have a wonderful guest who is going to talk to us about the highways and byways and airways of travel while being disabled.

Hi, Natalie. How’s it going?

Natalie Alden:

It’s going really well, going really well. Looking forward to the holiday season.

Raquel Rosa:

Yes. Can you just tell us who you are, introduce yourself, and a little bit about you?

Natalie Alden:

Of course, my name is Natalie Alden and I am a C5 quadriplegic and I use a power wheelchair. I was actually disabled at the age of 16, so I’ve been in this chair for quite a long time. I currently work at Disability Rights Florida, and I’ve been here 19 years. I primarily work right now on our representative payee program, which includes an extensive amount of travel. In this month alone, I think there’s one week I’ll actually be home. And so it’s a very rewarding job and I’ve actually been able to work on multiple parts of our agency and probably under every single grant that we have.

Raquel Rosa:

Yes, definitely a shining star at Disability Rights Florida. Natalie, just for bonus information, what do you do when you are not saving the world?

Natalie Alden:

Oh, so I am active with a lot of my city entities. I actually sit on the Mayor’s Disability Council. I also worked a lot with adaptive recreational and sports. I love to garden, I love to sew with my sewing machine, and I like to hang out with my five-year-old granddaughter.

Raquel Rosa:

Wonderful. So Natalie, as you mentioned earlier, you travel extensively. I know that you have been in Florida for a very long time and you’ve lived other places as well. I was hoping that you could talk to us a little bit about what your overall travel experience has been like. What method do you prefer? What have been some real successes? What have been some real bummers? Let’s start there.

Natalie Alden:

So I would say that overall, I do prefer to drive. I think that being somebody who has a very severe disability, but being able to have that control over going from point A to point B is my favorite mode of transportation. But of course, you can’t always drive where you want to go unless you want to take four days to get there. So of course, flying is one of those methods that is an essential at some moments in time. I’ve had some really good experiences and I’ve had some really poor experiences.

I used to live in Colorado and I know that back when my oldest son, oh, I think he was just a little over a year old and we had to fly from Colorado to Jacksonville, and driving with a power chair is one thing; driving with a power chair and a baby is way, way out there. I know that you see the accommodations and all of that, and I think knowing your rights show you more on what you can and can’t do.

I know I have a tendency to always gate-check my chair just because of the fact that I want to make sure that I have the most access to it. And when you have an impairment like mine, you are always the first person on the plane. They always want to make sure you’re getting down there first and you have plenty of time to get on there. I’ve traveled with PCA’s and I’ve traveled on my own. There’s good and bad points to that depending on the airline.

I would say in general, my experience with flying is that I’m only going to do it if I absolutely have to. I kind of don’t like to do traveling, especially in the holiday season, on a plane because one, you have more overcrowding, you have more overbooked airlines, and so I would just say be very picky and choosy if you do plan on doing it.

And pre-planning is essential. I think knowing exactly what’s going to happen, talking to the airline, making sure they’re understanding that you use a power wheelchair, of course they’re always going to ask you about the batteries. I always say if you can, have somebody take their phone or a camera and just do a walk around of your chair right prior to getting on the plane so that you have a digital recording of if your chair’s in really good shape or bad shape or whatever because that’s going to help you if something happens to your chair afterwards.

When you first go up to the desk and they look at your chair, some airlines are going to really look at your chair and they are going to write down anything that might be wrong with it if they can actually tell. What you don’t want happening is somebody who doesn’t say anything and they want to argue with you afterwards that maybe the damage was there beforehand. So I think it’s very critical to make sure you are getting some kind of digital record of the condition of your chair.

And then part of it is a preference on whether or not you want to get somebody to actually put you in that Hannibal Lecter chair, as I call it, from your chair to the actual seat. I know that I have PCAs that have traveled with me that simply they will just pick me up like a baby doll and put me all the way in my chair. But of course, if you’re going by yourself, you’re going to utilize the staff, the employees there, and communication is going to be your best thing on trying to get transferred to and from your chair into the seat that they give you.

And I think that’s also why you really want to make sure you’re contacting them ahead of time. I find if you’re really nice to the person who talks to you, even on airlines that don’t have preferred seating, they will really try to get you into a bulkhead seat or something where it’s going to be easier to do that transfer. A spoonful of sugar does go a long, long way.

And so I know that I did have the opportunity to travel all the way to Ireland on vacation one time, and that was a very long flight, and I think it’s very doable for people to be able to do things like that, but in the same breath, you have to be proactive. I’m very lucky because of the fact that I do have a drainage bag, so I didn’t have to worry about actually having to be transferred or for somebody to carry me to the restroom that probably is not going to be accessible enough for me anyways. So I do tell people that if you’re going to be traveling, feel free to bring a urinal or something.

I know one of the things many people with disabilities have a tendency to do is be like, “Well, I don’t want people to see that,” or, “I don’t want to…” I really say, “Embrace your disability, really embrace it.” It doesn’t matter. It’s a part of making it where you can be as independent as possible. And if me bringing a urinal on the plane is what I need, then that’s what I need. But I can go further and further on this, but I will go ahead and put it back to Raquel right now.

Raquel Rosa:

Those are really great tips. I think there’s a lot that I know it’s new to me. I think there’s a lot that is going to be new to a lot of our listeners. Really fantastic tips. I love the gate-checking. I love the video piece. Self-advocacy, holy cow. I mean, I already know about that part, but I’m just saying that how important it is to speak up and keep that accountability present, that’s the secret sauce, Natalie. That’s it.

I’m going to actually pitch it over to Stephanie because I’m sure she’s got a couple of questions for you as well.

Stephanie Flynt:

Yeah, no, absolutely. And Natalie, thank you so much for sharing your experience with us when it comes to traveling with planes, trains, and automobiles and all of the things.

I think that one thing that really has been demonstrated is that when it comes to individuals with disabilities, one size doesn’t fit all when it comes to traveling. Some things may work for some people and some things may work for others. And then also too, when we have these conversations, we’re able to maybe take different tips that other folks have that may work well for us. But yeah, no, thank you so, so much for sharing with us today.

I’m trying to think if I… Sorry, guys. I’m trying to think if I have any questions. I feel kind of bad, but I feel like you’ve covered all of the good things.

I guess maybe a question that I have for you, and I know flying can definitely have its challenges, its difficulties, and you’ve definitely covered some of the challenges and difficulties and how you’ve gone about advocating for yourself when it comes to flying and different things. And I don’t know, I feel like sometimes we need to hear some positive experiences when it comes to traveling through the holidays. I know for me personally, sometimes I get super anxious about what kind of person I’m going to get at TSA. Are they going to try to over-assist me? Are they going to try to test my boundaries?

Just for some context, I think most of our listeners know, I’m a blind person, and so sometimes people might, say for example, try to grab me in the middle of the security line and I’m like, “Hey, can you ask? Don’t grab me. Can you please tell me where exactly you’d like me to go in terms of Z, Y, X and X, Y, Z versus grabbing me and trying to pull me one place and then another, and then another. Let’s treat people with disabilities like humans.”

But I guess this is a long-winded way of saying, could you tell us about one of your positive experiences just so that we can kind of… I don’t know, I think that might be helpful for folks traveling over the holidays who may be anxious about the whole ordeal. Of course, we do have negative experiences. No experience in terms of traveling and flying with a disability is going to be perfect, but that doesn’t mean that you’re always going to have bad experiences all the time, even though we have both types, right?

Natalie Alden:

Yeah, and I definitely can. I know that one of my fondest memories was actually on a Southwest airline when they got me. I was down, I was flying by myself, and they got me on the plane and the steward, he actually kneeled down so that he could see me eye to eye. And he asked me, he’s like, “Hey, I just wanted to have a conversation with you and ask you if anything happened to go wrong in the plane, would it be okay if I just grabbed you,” and he was showing me underneath my arms, “and pulled you off the plane if there happens to be an emergency? I just want to make sure that there’s not going to be an issue with that.” And I was so happy about the fact that you actually had somebody who not only was very good about disability etiquette, didn’t just stand and tower over me, but actually kneeled down to my level and then wanted to have a conversation about what was going to make me comfortable getting me off the plane in an emergency.

Of course I told him, I said, “I really don’t care how you get me off the plane as long as you get me off the plane,” but it’s great when you have people that actually want to take that time to make sure that you’re going to be okay. And that particular steward, I made sure, because he was so accommodating during the whole time on the plane, making sure I was taken care of because I was flying by myself, he wanted to make sure that the landing was going to be okay for me, and I actually made sure that when I got off the plane, I found a manager for Southwest and let them know, “Hey, this particular individual went above and beyond. You’ve got ADA, and then you’ve got what is a human reaction to it. We want something that’s more practical. And he did that.”

And I was told that when you do give them those kudos like that, they do get bonuses, so I was really happy to hear that also.

Stephanie Flynt:

Yeah, absolutely. Absolutely. I think it’s so important that when folks are doing a good job, I definitely try to go out of my way when it comes to airlines for folks that are doing a good job to let those airlines know like, “Hey, this is how it should be done. Keep it up.” The fact that that person asked you versus just assuming, I personally would’ve maybe been startled if someone just randomly came over to me and grabbed me out of my seat, tried to get me off a plane, even if it was an emergency, which could be more startling just depending on the circumstance. But the fact that he was willing to talk with you about your needs, and I think that’s just a perfect demonstration about how one size doesn’t fit all. And thankfully he got that, and I’m totally here for that. That’s awesome.

Natalie Alden:

Well, and I think that as a person with a disability, whether I’ve been traveling alone or whether I’ve been traveling with a PCA or family, I always want to make sure that I’m taking a really good active role in what’s going on. And so when I’m being gate-checked, I’m gate-checking my chair, it ends up where I’m letting the stewardess know, or whoever it is that’s out there, that if they have any problems, that this is my phone number. I try to make sure that my PCA puts my chair into the position that I know is going to be the most helpful for the people who are putting my chair onto the plane. And I think that if you try to make sure you have that good communication back and forth, they are going to make sure that they’re taking care of your property better.

So it’s just one of those things that we kind of think that the people doing stuff for us know how to do something better, and they may not, and we should never be too shy or too much, “Oh, well, they’re doing their job,” to take the time to say, “no, I want to make sure you’re doing it correctly.”

I know I had an instance once when I was on one of the planes and my PCA was like, this is before we took off, my PCA is looking out the window and literally tells me that it looks like they’re trying to rip my chair apart in order to get it on the plane. And I immediately was yelling for the stewardess and letting her know, “Hey, that’s a $35,000 piece of equipment that they’re about to break.” And immediately she said, “Hey, everybody’s walking away from your chair.” So they evidently radioed down very quickly and the guy came all the way up, spoke to me about my chair, and then made sure that it was placed on there properly.

But had I not taken the stance of saying, “Hey, wait a minute, I see what you’re doing and you need to do it better…” We need to educate people one at a time, and we need to make sure that we’re doing it in a way where you’re being respectful because I think if you’re not, then they’re not going to listen to you.

Stephanie Flynt:

Yeah, absolutely. I feel like sometimes we can get lost in the customer service shuffle at that point, especially around the holidays. Airlines definitely deal with a lot of angry people around the holiday, angry people in general, but especially around the holidays. And if we can try… And again, I’m not saying that people with disabilities have to be perfect little advocates all the time. When I have 6:00 AM flights, I better have coffee or I am not the happiest person.

But all that to be said, the littlest things, like educating one person and advocating for yourself to one person who may understand because of your advocacy, later on, the littlest things just they make the biggest differences. And that’s something that I always try to tell people, even if it doesn’t seem like it, educating one person, whether it’s an airline attendant or someone at the grocery store about disability etiquette and doing it in a respectful way, if you absolutely can, that really can make such a big difference for other folks down the road

Natalie Alden:

Well, and I’ll give you a thing. I was actually at a layover in between my destination. Hold on a second.

I was actually at a layover in between destinations, and when I had gotten off the plane and they put me into my power chair, I went over to the new place where I was going to be getting onto the new plane, and I made sure I spoke with somebody at the desk and very much was like, “Hey, I just want to make sure you know that I’m here and please let me know if you need me somewhere certain because I know the airport’s really crazy right now.” And she was like, “Oh, no problem, no problem.”

And then probably maybe like 10, 15 minutes later, she came over to me and told me, “Hey, they’re actually going to be delaying this flight and they’re going to make everybody try to get a different flight. I’m letting you know this first so that you can call this number,” and she gave me a phone number and she said, “and they will go ahead and get you onto the next soonest flight.” And so she gave me that information, told me where to go to call before she announced it to everybody else that was sitting there waiting for the same flight.

I do say being a little bit more respectful and trying to be a little proactive really ended up helping me because I was one of the few people that was able to get on a sooner flight, and I only ended up having to wait approximately 45 minutes where some people were having to wait four and five hours. So it is that education and it is being proactive that can really make it where you go from having a bad time flying to an “I’m okay” flying.

Stephanie Flynt:

Absolutely.

Natalie Alden:

And I know that you guys were talking about other forms of transportation. I will say that I have been able to do the Auto Train on Amtrak from Sanford, Florida up to Lorton, Virginia. I really think that it’s that same thing of being able to talk to someone, telling somebody, “This is my disability, this is what I need for assistance.” They ended up getting me into a sleeper car, and it was really a great, great experience for me.

I will tell you, if you are ever doing that and you are able to get the sleeper car, it is very accessible for someone like me. And like I said, I’m a C5 quad. I’m a full transfer. I will say that whoever is going with you, if you have a PCA, they will have to be able to climb up for the bunk bed. But hey, it was a good experience though.

And so I think though, no matter what you’re doing, you really have to make sure that you’re doing a lot of pre-planning. I know a lot of people that don’t have disabilities don’t have to think about those things, and you’re kind of like, “Hey, this is extra,” but at the end of the day, it can make the difference between you having a very good experience or you having a very bad experience no matter what form of transportation you are having.

Stephanie Flynt:

Absolutely. Definitely can save you a lot of heartache, even though it seems like a lot of stuff that you have to do on the backend. But yeah, I definitely would agree with that.

Oh my goodness. Natalie, thank you so much for sharing with us today about your travel experiences, just everyone getting ready for the holidays and traveling home. I know that I personally found them super insightful, and I’m sure that our listeners have also found those experiences insightful as well. So yeah, thank you so, so much for sharing with us today.

Michelle Bishop:

Wow, that was amazing. I am inspired and so excited for the holidays. Why don’t we go ahead and close out this episode with “All I Want for Christmas Is You” because I’ve heard it’s Stephanie’s favorite song and that’s how I’m going to remember that forever?

Stephanie Flynt:

Nope.

Michelle Bishop:

Oh, wait. Before we get to that Stephanie, do you have a holiday-themed joke for us?

Stephanie Flynt:

I mean, I started thinking about it and since Michelle doesn’t like my jokes as much, I’ve decided to do something different for Christmas and give her an early Christmas present. It’s a haiku!

Michelle Bishop:

It’s a haiku? Oh, this is going to be… All right.

Stephanie Flynt:

All right. Everybody needs to get their Starbucks holiday cups. This is very important, very important PSA.

Michelle Bishop:

I’m so worried. Go on.

Stephanie Flynt:

Caffeine is important, necessary for me to function. Drink coffee now, or go caffeinate now.

Man, I messed up my own haiku. I guess I… Oops, oops. Happy holidays, y’all. Sorry I messed up the haiku. Please don’t send us hate mail for that.

Michelle Bishop:

Podcast@NDRN.org. Jack, how can the people find us on social media?

Jack Rosen:

Log off social media. Spend time with your family.