Katie Haynes Interview

In this episode, we interview Katie Haynes from Youngsville, North Carolina. She is the first person to compete in the Miss United States Agriculture pageant in a wheelchair and we talk about her pageant experience in many competitions. She has Gastroparesis and a rare form of dysautonomia called AAG, Autoimmune Autonomic Ganglionopathy. She formed her own non-profit organization called Smiling While Sending Hope and it's mission is to make an impact on others' lives and bring smiles to people's faces, to spread awareness of many chronic illnesses and special needs by supplying them with care package while in the children's hospitals in North Carolina.

Transcript

Mary (00:12):

Thank you everyone for joining us for this episode of This Ability Podcast. I'm your host, Mary Baudoin, and joining us today is Katie Haynes and Tammy.

(00:22):

Well, thank you both for being here on the show. So tell our audience a little bit about yourselves.

Katie (00:27):

My name is Katie Haynes and I'm the founder and CEO of Smiling While Sending Hope Nonprofit. We help people with chronic illnesses and special needs. Graduated from Southern New Hampshire University with a degree in photography, and I like showing rabbits, I like hunting and outdoor activities and shooting sports.

Mary (00:47):

What about you, Tammy?

Tammy (00:48):

I'm Tammy [inaudible 00:00:49] and I'm originally from Rhode Island and I've lived over... The one state I have not lived in is Louisiana, but I've lived in Florida, Alabama, Tennessee, Georgia, North Carolina, and I'm the vice president of Smiling While Sending Hope when we became a nonprofit almost four years ago.

Mary (01:08):

Great.

Katie (01:08):

I'm from Youngsville, North Carolina and I'm a North Carolina native.

Mary (01:12):

We actually have a Youngsville, Louisiana.

Katie (01:16):

I know. My medicine has been sent there before.

Tammy (01:21):

Oh, that's funny.

Katie (01:21):

Yes. There's a CVS there, apparently.

Mary (01:22):

Yeah. It's only about maybe 10 miles south of Lafayette.

Katie (01:26):

Oh my goodness.

Mary (01:28):

Yeah. It's very, very close. So Katie, before we started the show, you were talking to me about actually your nonprofit organization. It's called Smiling While Sending Hope. So tell us more about how you came up with the idea to start your own organization.

Katie (01:45):

So there was a little boy in my church and he had childhood cancer and I started helping with his nonprofit, Fight like Paxton, and he had a toy drive and then eventually I wanted to start it on my own. And so it started with the toy drive and now it's grown into care packages for people zero to 26. We go to the Ronald McDonald Houses and provide dinner and programming. We go inpatient room to room at certain children's hospitals and bring care packages, and then we do private events for caregivers, siblings, and the families.

Mary (02:17):

That's awesome. I know of a family here in Lafayette that stayed at a Ronald McDonald House. I don't know if it was the one in your state or not, but she said it was an amazing time that they had there from start to finish. Everybody was wonderful. Groups like yours definitely helped to make it more comfortable for them, so thank you for that.

Katie (02:36):

I know. I've stayed at Ronald McDonald Houses. I've stayed at a couple here in North Carolina, one in Virginia and then one in Ohio. That's a good organization and that it's meaningful for the families to see somebody giving back.

Mary (02:49):

Absolutely. And speaking of giving back, when I was doing some research on the mission, Smile While Sending Hope, it is to make an impact on others' lives and bring smiles to people's faces, to spread awareness of many illnesses and special needs. Who are some people that you've met over the last few years who made a significant impact on your life while you're achieving this mission? While you're going out there and you're helping people, I'm sure you meet a lot of great people. So who stands out to you?

Katie (03:20):

Our girl, her name is Allie and she's from West Virginia and she came down here to [inaudible 00:03:26] for an appointment that they only have in certain parts of the south. Her story just stood out to me and she was very nice and very sassy for somebody in a wheelchair.

Mary (03:37):

Nice. Yeah. So how does it make you feel whenever you give the toys for the toy drive and the care packages? How do you feel about the response that people give you?

Katie (03:49):

I think that when you deal with the public, you deal with all kinds of people and you get different reactions, but for the most part you see that you're being a blessing in people's lives and just doing what's best and showing them that there isn't anything that should hold you back in life.

Mary (04:05):

Right. That's really cool. I was just doing some research about what you guys do, and I know that you send out care packages to individuals with chronic illnesses and special needs from birth to age 26, and even those individuals who may have some sensory needs, what exactly is in the packages and how do you raise money to do this?

Tammy (04:26):

Well, we get bags that are the big shopping bags from Marshalls or HomeGoods, fill them up with blankets, pillowcases, business card, and we ask questions beforehand. So if they like to color pink, we try to put a lot of pink, puzzles, crafts and toys. And if there were a certain age, we put Barbie dolls and gift cards. And then for the boys and babies, we'll have trucks, cars and sports games.

Mary (04:57):

Nice.

Tammy (04:57):

And they love puzzles so far. We just gave a care package last week and he couldn't wait to go home and have somebody teach him how to play The Game of Life.

Mary (05:05):

Yeah, that's fun. So I want to back up a little bit because I'm just kind of looking at the outline. Do you want to talk about the beauty pageants and how you got started with that? When did that become important to you and your life?

Katie (05:17):

So in 2020 I was looking for something to do with the coronavirus and you couldn't do anything, and then it was outdoors, so I started in the Mission United States Agriculture pageant and I've done it for, well, different pageants for five years.

Mary (05:34):

That's incredible. Since you've done several, what would you say is something that you've learned from competing in these pageants or participating in the pageants? I don't know if it's really a competition so much.

Katie (05:45):

It is a competition.

Mary (05:46):

It's a full-fledged competition? Okay.

Katie (05:49):

I think that from it, there's people of all different mindsets and especially when they don't understand people that have disabilities and-

Mary (05:59):

Wait, there's people that don't understand people that have disabilities participating in a pageant?

Katie (06:04):

Just participating in the pageant. Yes.

Mary (06:06):

Have they been living under a rock?

Katie (06:08):

I know, right? But I mean, it goes from the people running the pageant to the people participating in the pageant, and I just think they don't have a clear understanding of how to treat people with disabilities, how to get ramps, how to-

Mary (06:23):

Okay. Not to interrupt you, but would it be fair to say that you haven't been welcome in certain pageants?

Katie (06:32):

Yes.

Mary (06:33):

Wow. I'm sorry that you've had to endure that, but you seem like such a positive person that you have a light that I can see from here in Louisiana and I think anyone that would attain the notion of not having you in a pageant would be foolish, and that's a shame.

Katie (06:53):

I wouldn't say every pageant, but a couple of them. It's just how they were ran and making sure that I had a ramp was an issue. I got to one pageant and I didn't even have a ramp there. Luckily, I had a friend an hour away and she could bring me a threshold ramp, but I couldn't get up there by myself and so they had to push me up there. But I used the pageant as a way to educate people that everybody had a place in agriculture no matter their disability. And I think the pageant as a whole, if I took my experience of reaching out to these places and making sure these forms were accessible, giving them the resources and just being a role model and I take that away from the way I was treated, I think my experience would be that I made a lot of connections that will last a lifetime.

Mary (07:45):

Definitely. You can see the good in any-

Katie (07:48):

Right, right.

Mary (07:48):

That's a great attitude to have. Yeah, it definitely sounds like that there needs to be some education and maybe more advocacy for people with special needs.

Katie (07:58):

I mean, there were a lot of people that supported me, don't get me wrong once you got there. With everything, there's always negative and positives.

Mary (08:07):

Well, I mean that's the one thing that I think any pageant director should take into consideration is that it's for everyone and that it should be accessible and they need to make it accommodating for anyone of any need. So I'm glad you were able to share that with me.

(08:24):

I do want to congratulate you because I read that you are the first person to compete in the Miss United States Agriculture pageant in a wheelchair. So I wanted to congratulate you on being a trailblazer for the inclusion revolution. What does that mean to you as being the first person to compete in a pageant in a wheelchair? And do you consider yourself to be an inspiration to other people?

Katie (08:48):

I hope to be an inspiration to other people, but yes, being the first person to not only compete, but also win a national title in that system and now going on two more systems that I've won a title in and we're the first person in a wheelchair, it means a lot to me. And then to know that there's somebody this year competing at the Miss United States Agriculture Pageant that's in a wheelchair as well just is amazing.

Mary (09:13):

That is. I mean, I think it's great. We actually had a few years ago here in Lafayette a Mardi Gras ball. Their crew for the Mardi Gras ball consisted of everyone with special needs. They didn't pay anything to enter. Moms and dads were able to go and we dressed casually so that the formal wear would be on the focus of the participants. And it was just a blast to see. That was an event that we really embraced. It was a lot of fun. I did want to ask you just briefly for our audience to know what condition do you have and how your health is now?

Katie (09:47):

I have dysautonomia. The form of dysautonomia that I have is rare. It's called AAG, Autoimmune Autonomic Ganglionopathy. I have gastroparesis and mast cell activation syndrome, and then a lot of other chronic illnesses and special needs. I also have Asperger's.

Mary (10:02):

Was this something that developed over time or was it something that you were born with?

Katie (10:07):

I was diagnosed with Asperger's when I was 14 and then when I was 17 I got diagnosed with POTS, which they only know as the other type of dysautonomia. And then from there it feels like every year I'm diagnosed with something new.

Mary (10:21):

What is a typical day like for you? Do you have to take a lot of medication or do any type of physical therapy or anything like that?

Katie (10:28):

I have to go to doctor's appointments and take medicine in the morning and at night. And for gastroparesis, I have a feeding tube, but I'm not on 24th hour feeds. I'm on nighttime feed.

Mary (10:40):

Tammy, did you have anything that you wanted to add at this point? I have a few more questions.

Tammy (10:44):

Well, she is my inspiration. I helped with her drive by or her graduation and we did a lot of [inaudible 00:10:52].

Katie (10:51):

My college graduation.

Tammy (10:52):

College graduation. And we put it all together, a lot of phone calls with different people on it. And Katie showed up and she had a notebook and I said, "Oh, this is the lady I'm going to volunteer for." She had a job for everybody that day. I was like, "Oh boy. This is it."

Katie (11:10):

I'm OCD.

Mary (11:11):

Nothing wrong with that.

Katie (11:14):

Some people, either you love it or you hate it.

Mary (11:15):

Tell us more about your organization. What projects are you working on right now or in the near future?

Katie (11:21):

Well, we're going to go the North Carolina Zoo. We just partnered with them. We're going to go to the fair again this year we're working with a couple more children's hospitals in the Charlotte area. What else, Tammy?

Tammy (11:32):

We're going to have working with a church to do a carnival in September and then we still have our care packages and our office that's new to us, so we've been-

Katie (11:44):

And possibly moving into an indoor storage unit from an outdoor storage unit.

Mary (11:48):

Oh wow. That's a big thing.

Katie (11:49):

And it'll be great because it's hot in North Carolina.

Tammy (11:52):

Oh, for sure.

Mary (11:53):

You don't know hot. You don't know humid. You walk outside, it's sweltering y'all. Geez. Yeah, we don't like to do anything outside.

Katie (12:02):

But y'all get more snow, don't you?

Mary (12:04):

We never have snow.

Katie (12:06):

Oh, okay.

Mary (12:07):

Never have snow. Once every five or six years we got a little twinkle of snow, but it melts as soon as it hits the ground. It's more like slush and people here in Louisiana can't drive in general, much less when the roads are just a little icy.

Tammy (12:31):

For new things we're doing, we're going to have a Christmas in July toy drive.

Mary (12:36):

Well, speaking of that, I was looking at the statistics that were in your press release and it looks like in 2022 and 23 that you guys successfully donated over 450 care packages and donated over 2,500 toys and items in the toy and food drive. So I wanted to ask, do you have a target area that you try to focus on or specific families or do people have to apply to get the help that you provide? Tell me a little bit more about the process.

Katie (13:06):

It's all of North Carolina and they don't have to live in North Carolina if they're being treated at a North Carolina hospital, and it's all chronic illnesses and special needs.

Mary (13:15):

So do you drive yourself?

Katie (13:16):

I wish. I can't afford to drive. My goal is to get a truck.

Mary (13:20):

That is very exciting. How is your experience from getting to the airport to getting on the plane to getting to your destination, being in a wheelchair?

Katie (13:30):

I've had friends that have some pretty awful experiences, especially with damaging wheelchairs because that's the number one problem with airlines right now is that over 20,000 shares per airline get damaged or lost a year. And that's not just one airline, that's per airline. So if you think about that, that's a lot of chairs that get damaged and messed up and they don't think about it because they could replace the wheelchair, but it's not customized. You have to wait for that process, so that's a whole thing within itself. But I've never had that issue. I've always used TSA Cares and they take you from the gate to the airplane and get you on the airplane and take you back to the gate.

Mary (14:09):

And you are able to transfer from your chair into a regular airplane seat or do they have to-

Katie (14:15):

They have to get me in an aisle chair and take me and put me in there and then I can transfer from the aisle chair to the thing and typically with Southwest, I've flown other airlines, but Southwest is first come first serve seating and since I can get onboard first, I use the [inaudible 00:14:32].

Mary (14:31):

You have a feeding tube, so I'm assuming you have an all liquid diet?

Katie (14:35):

Oh no. I can eat by mouth. This is my first time flying with that because I just got my feeding tube last September and so I'm nervous about that too. But with TSA Cares, they're supposed to be more accommodating because it's medication. And you mark it with a medical bag tag. You're supposed to when you're going on an airline.

Mary (14:56):

We can probably wrap it up. Do you have anything that you want to share with our audience, or Tammy, is there anything that you'd like to share with the audience that we haven't touched on?

Tammy (15:04):

Biggest thing I've learned is, and I think we touched this real fast, buildings that make it very a accountable for wheelchairs, and I think it should be almost a lot, every public building has a push button so you can open it. It's like to hold a door and try to get a wheelchair in.

Katie (15:21):

Yeah, and I mean, I can carry stuff in my lap, but it's had to carry something, push and try and hold a door.

Mary (15:26):

Oh yeah.

Katie (15:26):

It's heavier than others and it's just impossible. The last place I worked at, I fought for a year to get it on the bathroom doors just because I couldn't open it. I had to have somebody go with me and I wanted to be able to go by myself. And finally I got it after a year, and then I fought another half of the year to get one to go on the store door, and that was supposed to be a place that hired people with disabilities.

Mary (15:47):

Well, thank you for championing that effort because of you. That building has now an accommodating bathroom for other wheelchair patrons.

Katie (15:57):

And not just people in wheelchairs. I mean, it could go, people have issues with strollers or any type of mobility issue that you might not be able to see because a lot of things, if I wasn't in this wheelchair, my stuff's invisible and so a lot of people wouldn't even know.

Mary (16:11):

Well, it was a pleasure to meet you both via Zoom. Appreciate you sharing your story with us. It's going to wrap up this episode of This Ability podcast. If you are enjoying listening to our podcast, be sure to like our page on Facebook at This Ability podcast or subscribe to our YouTube channel.

(16:27):

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