Episode 12: Chayah Lichtig and Hannah Setzer

In this episode, we are lucky enough to have author and disability rights advocate Hannah Setzer join us! Setzer runs the hugely popular instagram account @feedingtubefitness, and just released a new book: “I’ll Pray for You (And Other Outrageous Things Said to Disabled People)”.

She joins the director of the Vermont Continence Project, Chayah Lichtig, as they discuss disability, pre-conceptions, instagram as both a community for people with disabilities and a public arena, and of course, the outrageous things said to disabled people.

A full transcript appears below.

Chayah: So I would like to start with an introduction, and it’s just and I don’t know you at all, we’re meeting for the first time, but I’m introducing you based on, having read your book, followed you online, and also read a bit about you from different content on the internet. So when I get to the end, I would love if you fill me in if anything is wrong or if anything is — if I left anything out, and I’m sure I’m going to.

Hannah: Sounds good.

Chayah: So Hannah Setzer is a self-described joyful rebel. Some of the many hats she wears are homesteader, business owner, foster, and adoptive parent, community activist and organizer, social worker, and disability rights advocate with the Disability Law Center of Virginia.

Hannah is a fierce athlete and at this point is probably best known for her Instagram page, Feeding Tube Fitness, where she shares serious and funny fitness and health content, inspiration, thoughts, and the occasional dead-on rant.

She regularly encourages her online following to move in whatever way makes them feel good and offers physically and financially accessible ideas for fitness and movement.

Hannah is the author of the funny, touching, and thoughtful book “I’ll Pray for You: And Other Outrageous Things Said to Disabled People.”

Hannah: Spot on. Spot on. That was great. You should just like follow me around and introduce me to people. Cause that was better than I could do.

Chayah: *laughs* I could send it to you. And you know what, the farther I read into your book, the more impressed I was with all the extraordinary things that you do with your life and all the things that you’re passionate about.

Just so you know a little bit about me, because you know, before this moment you probably only knew
me if you’ve looked me up on our organization’s website. So, I am an occupational therapist and I work for a project at a center at the University of Vermont. Our center is called the Center on Disability and Community Inclusion.

And a lot of our work is centered on this idea of access and participation regardless of skill, regardless of disability, and so I’m sure you can see why your message and your work online really spoke to me.

When you put out the call that you were looking for some places to publicize that you had written this great book, I really jumped at the opportunity. My two areas where I do the most of my work are like, early childhood practice, birth to three (or birth to five), and then also continence.

So continence care is a big part of my work. So that’s me; that’s what I do.

And so a lot of my questions are obviously kind of grounded in that. And you know, at any point during this interview, if you feel like what I’m saying or how I am kind of framing you or your work doesn’t feel authentic, totally feel free to let me know that. Totally feel free to help us realign. I do have a bunch of questions, but we’ll see where our conversation goes.

So the first question that I wanted to ask you is actually about the title of your book and the concept behind your book. The title of your book includes the words, “other outrageous things that people say to disabled people.” And you know, we’ve heard a lot of them in my line of work, and I don’t know, this might be like a sour jumping-off point, but I’m wondering if you could share a couple more of the ones that just like really have either rubbed you the wrong way or kind of like shocked you for how totally not insightful they were. *laughs*

Hannah: So it’s not always like things that people just say, sometimes it’s actions. And literally I can tell you an example that happened an hour ago, and I was like: good timing.

My husband and I stopped so he could get lunch at a food truck and when he stopped and he placed his order and the woman told him the total and I had cash, so I pulled out cash to hand to her and she said, “Oh, the food is for her, not for you?”

And he was like, “No?”

She was like,  “No,” like, “you don’t have to pay. You don’t have to pay.”

And he was like, “Here. Here’s the $14.50”, or whatever.

And she was like, “No, it’s for her, it’s not for you. She doesn’t have to pay.”

And my husband was like, “…what is happening?”

And I was like, she like, feels sorry for me, because I’m disabled and she’s not charging me for food because she thinks I can’t order my food by myself and then you had to order.

And he was like: “No way.”

And I was like: “Yes dude. Like, that is what’s happening.”

So we left a tip, and we took the free food. Like, if that’s the choice that you want to make, and an assumption that you want to make, who am I to stop you? Like, hey man, I’ll take the food.

That just happened today. But my husband and I own a business. We sell physical handmade products and one time I was at the farmers market selling them. Just down there selling them behind that table, and a guy came up to me and said, “Who told you you had to do this?”

And I said: “What?”

He was like: “Is somebody paying you to be here?”

And I was like: “…no?”

He was like: “Well that’s not right. Somebody should be paying you.”

And I was like: “What are you talking about, dude? I’m just at a market. Like, other people are selling stuff too.”

Then he handed me $20 and was like: “It’s not right that you have to work for somebody else and not get paid. I hate having people exploit disabled people.”

And I was like: “Okay…”  I think he thought I was l somebody’s puppet, sitting at this table while they were out doing something. So I took his $20 and I was like, “Thanks dude!”

Chayah: *laughs*

Hannah: I was like, I own this business. Like, I’m the business owner, and this is my product I’m selling. And I think he just could not imagine the possibility that a disabled person person would own a business. Like be out selling stuff, without being forced to by some other person.

Chayah: Right.

Hannah: Yeah people, I mean are just like wild. Like and I had the lemon light on like the woman today. Like I have tattoos. Like, I don’t know. My face looks how it looks. I’m the one that had the money. I pulled out the money [at the food truck] today and the lady was still like,  “Oh, the food’s for her? It’s free.”

And I was like: that’s on you.

Chayah: It’s so interesting. I’m sure that you’ve heard this term of “visible disabilities” versus “invisible disabilities”, and how many people with invisible disabilities are treated incredibly poorly in society, because people may not realize that they need certain accommodations, right?

And in some ways I hear from you that you have the opposite thing going on in your life.

Where people see that you have this disability, that you have this facial difference, they see your trach — or whatever it is — and they make all kinds of assumptions about you. Which on the one hand right, even if you did require certain accommodations, they’re not doing it in a way that’s respectful or personal to you. That’s just demeaning you as a person, right?

Hannah: Yeah.

Chayah: It’s just so interesting. So many of the stories that you told in your book, it was so clear to me the resilience that you have developed. And resilience doesn’t just mean being super tough, right? Sometimes it means being super vulnerable. Just to say like, “This sucks, and I don’t owe you an explanation.”

Hannah: Yeah.

Chayah: I was thinking near the beginning of your book you wrote about all the people who tell you they’re gonna pray for you, and how often you hear that. And I was reading this other book last summer that I absolutely loved. The name of the book was “Maybe You Should Talk to Someone” — I don’t know if you’ve heard of it?

Hannah: I haven’t.

Chayah: But it’s a great book and it’s written by a therapist. And she talks about how she was getting sick. And how so much of the phobia about getting sick is that it puts you in touch with your own mortality. It puts you in touch with this idea that anything could happen to anyone at any time, right? Like, I could get in a car crash this afternoon that would change the course of my life. I could have a baby who had  a significant disability or some other need — I’m trying to wrap my head around what I’m trying to say.

It’s like that people will tell you that they’re gonna pray for you as if number one,  you’re not praying hard enough for yoursel and that’s why you’re like this, and also that you don’t care enough. Or that this is the thing that you need to care about and the thing that you need to be healed from. I’m just wondering if you could speak to that at all.

Hannah: Yeah, I think it’s just a big assumption that people have when they assume somebody who is different: to assume that different is negative or different means they have to be fixed so that they look the same as everyone else does.

So in the book I talk about a woman who came up to me at a church that I was visiting, and didn’t introduce herself — I didn’t know anyone in the church, this is my first time visiting this church — and she came up and put her hands on my head and started praying for me and speaking in tongues.

I was so uncomfortable, and took her hands off me and walked away.

Yeah, it’s just crazy the audacity that people have to assume that they know what I need in my life or what should happen in my life without even knowing my name. They know nothing about me. And it’s just very
bold and brazen of people to make those assumptions. To think literally just based on how my face looks, that they should know the trajectory of my life without knowing anything about me.

Chayah: Yeah.

Hannah: Or… like you said, like that I don’t care or that I’m not doing enough to be fixed and be healed when they don’t know my medical history. They don’t know that I’ve had sixty surgeries in my life. I’m 32 and like, a lot of things have been tried. *laughs*

Chayah: Yeah.

Hannah: I think this is the best it is going to get, and that is okay.

Chayah: Totally. And also that like if you’re healthy and you like your life, right? And healthy is defined by the
person who’s living that life and in that body and, you like who you are. It’s really up to you how you choose what you do or do not choose to pursue. I think that it is just so interesting how many people really equate appearance with whether or not you’ve done the right things and made the right choices.

Hannah: Yeah. And certainly that goes beyond disability. That goes into like weight and fitness and just runs the gamut as people — as society — still think that thin is the way to be and that is superior and that’s the goal you should be striving for. There’s many billions of people on earth and nobody looks the same and it’s beautiful that we’re all so different. I don’t know why it’s so hard to celebrate that cause it certainly shouldn’t be, but I dunno.

Chayah: Yeah, yeah. I wanted to talk to you about the chapter where you talk about being not being an inspiration? And now I’m gonna have my Terry Gross moment and I’m going to actually — if you don’t mind — read it because I just love what you wrote and I’m gonna read for a moment. You said:

I’m not inspirational. If I had a dollar for every time I was told I was inspirational, I would be sending all my friends to space in our own rockets because I’d be so rich. The world loves to label people with disabilities and medical conditions as inspirational. Living my life with surgeries and medical devices does not make me inspirational. Simply existing as a person in a world in society that doesn’t understand me and doesn’t accept me isn’t inspirational, I think we’ve twisted the meaning of ‘inspirational’. It’s become something that
drips of pity and sadness and sometimes relief that our lives aren’t as sad as others.

‘Look at that person, they’re so inspirational.’

But if you actually look at their lives, chances are they aren’t doing anything inspirational.

Chayah: And then you go on to talk about your own life, and also, you know, friends of yours who have disabilities who are called inspirational just for existing. I’m assuming you’ve heard the term ‘inspiration porn’, right?  I work with kids who are often born with or very early on, there’s something identified as either a medical crisis or a pretty clear indicator that developmentally this child’s gonna need a lot more care and support.

Their families are often sort of processing and even grieving the fact that their life with their child and that their child’s life isn’t gonna be what they expected.

And a lot of times our work and our team’s work is to like remind families and their local providers — because we’re consultants — that this is a real whole person right in front of you. Regardless of
what they are capable of, how they’re capable of communicating with you.

And I think the flip side of this coin is to like feel inspired like you were saying, by the very existence of people with disabilities, you know, buying toilet paper, getting on a bus.

And so the question for you is: what would you like folks to know about your experience of being told that you’re an inspiration while doing everyday things?

Hannah: I mean it’s just ridiculous. Like I said in the book, I think people often use it in earnest and kind ways. But I think it always tinged with a bit of like, “Ooh, I’m glad that’s not me. That has to be so hard.”

To be very honest I catch myself sometimes saying that too. Like if I’m watching a video on Instagram and a disabled athlete or someone doing something really impressive I often am like, “Dang. She’s inspirational.”

Then I have to sit there and think: why do I think that? Is it because she is doing this crazy athletic thing that I can’t do and that is inspiring me to strive harder to be able to do that particular exercise and particular movement?

So I think you just have to think why you are saying things and I have to do that too, certainly.

I said in the book like, my friend is in a wheelchair, and she gets told at the grocery store: you’re so inspirational!

And she’s like: “I’m literally just shopping for toothpaste. There’s nothing inspirational about this.”

I don’t mind being inspirational if it inspires you to do something? Like if there’s an action or a change in thought behind it? Like:

  • If I inspired you to change your opinion about disabled people? Like: cool! I’m happy to inspire you to do that.
  • If I inspire you to go outside on a walk to end the day: I’m happy about that too.
  • If I inspire you to sign up to be a foster parent in your town: amazing. Kids need homes need homes so: great job.

But if I’m simply… being told “you’re so inspirational” and there’s no like, “because” behind it, like “I want to be inspirational because XYZ” and that reason cannot be simply existing. It has to be because of something I’m doing. And in turn that has to make you want to hopefully take action behind changing something in your own life too.

Chayah: Yeah, yeah. I wonder like if I troll my own thoughts, I find you to be incredibly inspirational. And I find you to be incredibly inspirational the farther I read into your book. Because I was like, she does that, too. She does this other thing, holy cow. From the beginning of your book, you make it so clear that you’re like, if I believe in something and I care about something, I’m gonna go get it done and I’m gonna be a part of it.

And I find that so inspirational. And I wonder if like a lot of the message under people just labeling people as
inspirational for existing is like: “Oh, it’s hard for you to exist. It takes more effort for you to be here, and you do extra things. Like wow.” You know?

And I think, I think it might be like a statement about… how each of us sees ourselves as not capable. You know what I mean? Like, oh, well if my life were hard then, you know… How many parents with children with special needs that I work with are like:

“I’m so tired of other parents telling me, ‘I couldn’t do what you do.’ It’s like, of course you would do what I do. It’s your kid, you take care of them. It doesn’t make me inspirational. It probably just makes me more tired. Like, I’m just out here trying to be me.”

You know what I mean?

Hannah: Yeah I hear that a lot in two other ways in my life. One as a foster parent, people would be like: “I can never do that. Like, you are so amazing”

And I’m like: “…But I’m nothing special. I just know the overwhelming statistics and how many kids needed
homes and like, I had a home. Like that literally that is like how easy the deciding factor was for my husband and I to start the process.”

Are there kids in our town that need places to be like a safe place to remain? Yes? Okay, sign me up.

I also see it all the time on Instagram when I post fitness-related things and people are like, “Oh my gosh. I’m not disabled and I can’t even do that.”

I’m like: you probably could, you just don’t like to put in the effort. I am choosing to put in the effort. Maybe that’s inspirational, maybe it’s not. I don’t think every choice we make has to have inspiration attached to it.

There’s literally this determination and hard work that people can choose to do. That’s it. I pay to join the gym. I budget time in my day to go to that gym — that’s a choice that I make not having anything to
do with my disability, but just as person. You can make those choices in your day too. It doesn’t all have to
tie back to disability.

But I think when people are disabled, it always does come back to that because people want to
attach whatever you’re doing to the fact that you have a disability.

Chayah: Yeah. You know, that’s something I was wondering about as I was reading through your book and actually kind of aligns perfectly with my next question,which is about your Instagram presence, and your feeding tube fitness account.

I got a big kick out of you saying that you started your account because you wanted free leggings.

Hannah: Yeah totally.

Chayah: Totally right. I get that, for sure. And you also talk later in the book about your dawning
awareness over time of — and this is a quote — how inaccessible fitness is in the disability community.

And I’m wondering: did the fact of having a visible disability impact your decision to build a social media
platform in any way? Either for or against? Or was it really just a fact that it was there?

Hannah: I totally think just the fact that it was there.I like had a New Year’s resolution in 2018 to move my body for 30 days straight. And then 30 days turned into 50,  into a hundred, and literally my real life friends were like, “We’re tired of you talking about this. Can you make like a fitness Instagram and like, talk to other people?”

And so I did.

No, it was no real intentions.  I just didn’t know that the fitness industry was so big. I had done several half marathons and played like in intramural sports in college that had never been in like the fitness world like I am now. I just didn’t know how big it was and how not-diversified it was.

I have learned a lot from building this community that I never anticipated. Honestly it was four and a half years into my journey of movement, before I ever stepped foot inside a gym. I was just doing everything at home by myself. So I didn’t really know what it was like to move out in the community as disabled and at a gym. And in June of 2020 I got invited to go to the crossfit gym in my town and I was terrified cause I was like, “Huh. I have never done it like that.”

And clearly like not one single moment that I had been in that gym — not every day but many times since June — not one single moment have I felt out of place. Not wanted, not accepted — really from the minute
I walked in the door, that community has been so kind and so open and really so inclusive.

Like, some days, my feeding tube will just not be happy, and I go and it’s like, “Coach, I can’t do half the things today.”

And they’ll be like: “Alright, let’s do this, this, and this [instead].” Without batting an eye. Without feeling annoyed. Just: this is what Hannah’s doing today. No big deal.

Right now there’s a worldwide Crossfit competition happening. It’s over three Friday’s, and I’m going this afternoon and one of the things that you have to do is put a barbell on your shoulders, which I don’t do because of my trach. I was just doing dumbbells instead. And it’s like: okay, noted. Nobody cares.

I’m in there working hard, everyone else is working hard and I feel so supported, which honestly I did not know that you can feel in the gym just cause I had never been a part of one. So I’m grateful to have the gym I have and just to know that there are spaces in the fitness world where people are celebrated and accepted, and not assigned things that make them feel inadequate and less than. Like, no. We’re going to celebrate you and what you can do. If this is what you can do, awesome. Let’s do it.

Chayah: Yeah, there’s so many things about what you said that are really like lovely and really encouraging to hear, I think especially for people who are, you know, feeling a little more hesitant about like, getting into being part of like a fitness community.

And I also just wanna say that one of the first things that you said was basically that you kind of forged this on your own for years and that in and of itself is the part I find the most impressive. Because if I’m not following a class I’m gonna go sit down. *laughs* That’s my vibe these days.

I was thinking one of the things that I really love about your Instagram account, one of the things I come back to again and again is that, you know, you regularly celebrate your wins. Like, you know, a taller box jump, or a heavier weight for a certain exercise.

And then also I love that you guys do these like really funny and enjoyable stunts either with your husband
Brandon or your gym friends. Like they’re just so fun, like they just — most of them like end hysterically and I love that. I love that. And I love that you’re not like waiting until it’s perfect, you know? Yeah it’s just like what’s “perfect”? And I do wonder, and maybe if this is redundant, you can just like pass, but like is there a specific message that you want your online presence to show the world?

Hannah: I think, and I talk about this in my book too: I do not think that I am like, the most fit person in the world. The strongest, the fastest, the most beautiful and the most like, well-spoken. I don’t think any of those things about myself, but I am willing to put myself out there in the world in hopes that society at large can see a disabled person doing all the insane things that I do.

Because growing up I didn’t ever see representation of anyone that looked like me certainly. But there were not disabled people as a whole in the media, you know, like don’t need to be anything, magazines. So if I can go first, I’m happy to. Again: not because I think I’m the best and I should be out there as like the poster child of disabled anything but If I can be a gateway to another disabled person saying, “Oh my gosh, I can try this” or “I always wanted to pursue fashion and pursue modeling” or whatever, and they see the video that I had of me like walking on the runway — again not because I’m like A+ runway model — cause I’m not– but those things are things that other people train even if they’re not my things like I can do.

I am happy to go first, I’m happy to be out in world, doing these things, having it on social media, even if I am failing. But you know, people on Instagram, if I post anything at the gym I always get comments of like, “you’re doing it wrong” and blah blah blah.

Like, who gives a (beep)?

I’m out here doing it and hopefully that gives somebody else the confidence and the encouragement to do the thing that they want to do too.

Chayah: I think that’s super thoughtful and I feel like we’re just gliding like butter through these questions that I have here. Because my next question was about how you talk about how exhausting it can be to put yourself in the spotlight, and I hear you saying you know, that the people who you’re really wanting to touch are not all the people who want you to be an ambassador to the like, non-disabled world, but it’s really helping other people who have disabilities out there to see that there’s a community out there that they can feel connected to.

Hannah: Yeah, I think it’s really important and really beautiful to have visibility and representation. and
I use the example a lot of the new Little Mermaid movie that’s coming out that has a Black woman playing Ariel. There’s all these reaction videos of all these little Black girls seeing Ariel for the first time and being like, “Whoa! She’s like me!”

And I get sad every time I see those videos. It’s just so important. And I just think about all the little disabled girls and boys who are just longing for the day that they can feel included and see themselves as a Disney princess. They’re ready, you know?

Community is so important, and growing up I just didn’t have that. Honestly, it wasn’t until college that I had my first disabled friend. I grew up with my parents not using the term “disabled”.  They were just like, “Oh, Hannah has a medical condition.” A friend from college has cerebral palsy and she had parents saying: you have a disability; you’re disabled.

We had a lot of come-to-Jesus talks. She was like: “Hannah, you’re disabled.”

And I’d be like, “No, I’m not.”

And she’d be like, “Yes, you literally are.”

But because she was my best friend it’s okay that we had these conversations. That process, to me, of accepting this identity has truly just opened up this whole community that I didn’t know I was missing, and didn’t know that I needed until I found it.

And it was so beautiful.

I’m so appreciative that the story I told in the beginning about the lady at the food truck today, I posted that on Instagram and I instantly sent it to all of my disabled friends and I was like, tell me this hasn’t happened you because I know it has.

There is something about feeling known and seen, and like laughing about these ridiculous things with other disabled people that is unmatched in the world.

My husband is amazing and so kind and patient that he’s not disabled. So like today I had to tell him what was happening at the food truck.

But then I texted my disabled friends, and they’re like, oh yeah. They got it right away, totally. They knew.

Chayah: I mean that is really such a story of sort of social media and the media sphere being like, a force for good that you talk about all the people that you managed to connect with through that. I wanted to read one more thing that you wrote, and it’s after you talk about some experiences you had as a kid: you talked about going to the zoo and a child there singling you out and bullying you.

Then you said,

These days kids can get picked on by millions of people all across the world at the tap of a finger. We speak out against all these horrors, but we give life to more and more pathways to have access to people.

There’s more representation now than ever, but it still comes at the cost of hurt people behind screens. A new kind of exhaustion sets in when you allow yourself to be public and thousands of people are entering your home and saying whatever they want to via a four-inch iPhone screen.

Oh man. My heart just really  went out to you when I read that. And I was wondering if you’d be willing to speak from your experience now being very much in the spotlight and in a very public identity. What can communities of allies do to make virtual spaces safer and more supportive for people like you who are really putting yourselves out there?

Hannah: Definitely listening to us when we speak, and respecting the words that we use. My best friend Ashley that I was just talking about, with cerebral palsy, she has a big account as well on Instagram and she’ll refer to herself as a disabled woman. I do the same on my account. And every time we get hundreds
of comments saying like, “You’re not disabled!” like, “Don’t talk about yourself that way! You’re just different!” and you’re special or whatever and it’s like no, no: I can talk about myself how I want to talk about myself. Disabled is not a bad word.

If I’m out here in the world calling myself a disabled woman then you need to listen to that and respect that, and use that terminology. I’m sorry if that makes you uncomfortable because society has not always used that term in a positive way. But we are the experts on ourselves, and that goes for everyone.

You’re the expert on you; I’m not. So if you said this is what I want you to call me, this is how I want to be talked about. Okay! I respect that!

It’s really just as simple as that.

When disabled people are talking, listen and respect what they say and don’t try to tell us that you know differently or that you know them better than they do.

I think that’s just a common courtesy that society in general is missing these days: respecting people and who they are and they let out in their lives.

And definitely it applies to disabled people, but I would say society as a whole.

Chayah: Thank you that’s really, really well said. It’s your point about like how the word disabled was really considered to be sort of a dirty word for such a long time. And for people, you know, for people with disabilities to reclaim that word and say like, no it’s not a bad word and it can describe me and that’s okay.

I think, you know, I think it goes back to this idea that people are afraid, right, often afraid of like,

“Oh my gosh, what if that were me? I wouldn’t want someone to call me disabled.”

You know?

Hannah: Yeah. I have friends in wheelchairs that refer to themselves as crippled. And I think a lot of disabled people are reclaiming this vocabulary and this terminology and like I said it might make you uncomfortable but I think it’s something that we just have to be okay with and accept and respect. I think that there’s the other like minorities too. It’s not just a thing that disabled people are reclaiming terminology. I think that is happening in a lot of different groups these days and like.

I’ll talk to older generations and say disabled person and they’ll say, oh no you’re
a person with a disability.

And I’m like, no.

It’s crazy. Disabled persons. One less word to say. It’s easy, it doesn’t have a bad connotation.

And they’ll be like, “No, person-first language is better and has you as a person.”

I’m like: Yeah. I’m a disabled person.

It’s just like: I’m still a person either way, I’m just trying to save a word.

Chayah: Yeah, yep, that’s absolutely spot on. I had a another question that was kind of about media representation of you and media representation of disability. And when I was preparing for this interview, I read your book and I also searched online to find, you know, information that maybe you hadn’t posted about, or kind of details about more things about you.

And what I found really difficult was to find information about you and your work.  I don’t know if you have  sense of what I’m about to say, but every single headline — with no shade thrown to anybody — every single headline references your disability in a degree of detail that seems wholly unnecessary. Right?

One headline was like, Woman Who Can’t Smile Becomes Disability Rights Advocate.

Another one was, Woman Can’t Close Her Eyes or Shut her Mouth after Dr. Blunder.

And it was like, if I’m reading correctly, that happened when you were an infant. But this is an article about your fitness and activism work as an adult. I was like, what would it be like for me? Like: Woman Who Got Stung By An Entire Beehive Gets A Job.

I’m wondering like if you have thoughts about the representation of your disability and publicity of you or your work.

Hannah: I would be honest: some of that is on me. Because I had no idea how to talk to the media. Within like six months of starting that Instagram account I just had no concept of like, hey, you shouldn’t say everything to a journalist because they will use everything you say. Probably against you.

So I just didn’t know and I just didn’t understand about the headlines and about the articles like that.

I am much more aware now and also like make people send me the headline ahead of time and send me the article ahead of time so I can say: no, this is not what we’re doing.

That was just like a live and learn moment. Like, holy crap the media is crazy.

I went viral from a FaceTime in the UK, I wasn’t even viral here in the US. And I guess in the UK they have a lot more like, Daily Mail and just like kind of trashier sites. Story after story after story. Tabloid press basically. So that was the first time I went viral. And then it was just like, I had no idea what I was getting into. Definitely had learned along the way how to say things much more diplomatically. But yeah, the media’s crazy. Period. Case closed, right.

Chayah: Yeah. I mean you’re so right. I think part of it was like, you know, when I read your book and I saw all of the extraordinary work you’re doing, right. And your your tagline in your book, which says: “my disability is the least interesting thing about me.”

It’s so interesting still how like just all this media representation focuses so much on your disability, you
know, and I was just, I couldn’t even find anywhere that referenced that you’re a social
worker for example. Or anything like that. It just really stood out to me.

Anyway, I wanna ask about your accessible park, accessible playground project. You and your husband Brandon have been working on trying to create an accessible playground in your town. Can you share any more about what or who inspired that? Who was the inspiration — to use that dirty word again — and what are you hoping to bring to your community with that playground?

Hannah: Yes. One thing about me is if I have an idea, I have to make it happen. Sometimes to my detriment. I was like talking with my husband Brandon last night and my husband was like, you know, the difference between you and other people is you dream big dreams, but you are willing to put the work in to make them happen. And not everyone’s like that.

And like, yeah, but it’s also exhausting.

But Brandon and I live in a small town, and at the time that we had this idea in 2020, 2021, there was no like, local coffee shop here. There’s just like McDonald’s and Dunkin’ Donuts and you know, coffee shops are places of community. You can go and work and meet people and hang out. And so we were like, oh wait,
let’s start a coffee shop.

Not that we know anything about starting a coffee shop but we had the idea and who knows.

And some of my friends were like, oh it would be so nice if you had a accessible playground that the kids can play at when the moms and dads are hanging out having a coffee, and we said oh my gosh, like yeah! that’s Why didn’t we think about that?

And then honestly, things like went crazy from there cause we’re like, our town also doesn’t have a laundromat. We should also start a laundromat! Again not that we know anything about having a laundromat. And then somewhere along the way a consignment shop got added on — we like essentially had this like vision of, I don’t know, like a strip mall I guess. I don’t know why. A whole town center. Really we’re like
trying to take over our town.

So we were talking to other people, looking at buildings, blah, blah, blah — just like insane.

And they’re like, “…one day.”

But Brandon was like, “Well what if we just focused on the playground?”

And I said, oh yeah, that sounds like a good idea. So we were like, okay let’s build an accessible playground here in our town. Because the closest one to us is about an hour away. And on the other side of the city There’s a few others in Virginia, but not anywhere close to us really. So we filed the paperwork to become a nonprofit and the nonprofit is called Growing Inclusivity.

We looked honestly for a year for a piece of property that we could do this on and we’d put offers in on property and got denied a lot of times. And then finally like had a funny happenstance meeting with the owner of a golf place and he was like, I have land, like put it here. And we were like, are we allowed? What are you saying? Like after a whole year where we were posting, looking at properties, getting denied, fundraising the money, and he was just like yeah lets do it.

So we signed contracts and partnered with a local golf place, Independence Golf here in Powhatan [Virginia]. He was like, here you go, do whatever want. He just like totally helped the vision, and he cares about the community.

I was like: this is amazing. I’m in.

So yes I still have no idea how it’s going to happen, because it’s like a $2 million project, and we have like a
hundred thousand dollars. So if you want to donate you can do so on our website.

Chayah: Well I was gonna ask you yeah. How do people donate? I’m assuming you’re still fundraising, so how could people donate?

Hannah: It’s just growinginclusivity.com and there’s a big thing that says donate.  I have no idea if it will happen, when it will happen. But my husband Brandon is like someone that’s more like reasonable and rational than I am. Like, I had an idea and I’m like okay like two hours later I’ll be like, why hasn’t this happened yet? Where is it?

And Brandon will be like, hey there, this isn’t literally like a five to 10 minute project. And then it hasn’t happened in like five minutes. He calms me down because I  will work myself up. So now I’m like, it’ll
happen someday somehow. We’ll see, it’ll be great when it does happen.

Chayah: That is awesome. That’s sounds like a really wonderful project. It’s so cool that you found a landowner and business owner that was excited about kind of bringing you on board too that’s so cool.

Well, we have been talking for quite a while and I wanna let you get on with your day. I know you have a CrossFit competition to get to. I have one more question for you that is really near and dear to the work that I do every day working with the, you know, teens and families of children. Usually, like I said, really young children with disabilities. Do you have any — I almost don’t like this question because I don’t assume
you to be the messenger for all people or anything like that — but do you personally have any message from your experience for the children and parents that are living that experience of diagnoses and disabilities and difficult medical procedures and things like that? Any words of support or thought for them?

Hannah: I think it’s hard cause I don’t have a family with a disability. I have four kids who are all over the place with ADHD, but they don’t have like medical conditions, which is that’s all I had known obviously is medical conditions and surgeries and things like that.

And that was not to minimize anyone with ADHD. Like they are wild and it’s insanity round here all the time.

But I think people that have kids these days are going with all kinds of conditions are so honestly lucky
to be born in this time because there’s just so many chances to connect with other people via social media.

I was born in 1990 and my parents didn’t have the internet, they couldn’t like google medical terms, they couldn’t google like, what happens after this surgery? It was really just my doctors and my parents hoping things went well, with their expertise and with what they had, you know.

But they were all making the best decisions that they could at the time and I’m really grateful because I’m still here.

And the other thing if my parents had had a community of people that like all over the world that they could learn from and share wisdom with and teach things to, like I just think that’s a game changer.

So I know sometimes you can get too in the weeds on the internet. You have to be the person that has boundaries, and that’s on you. So yeah I just think there’s so many ways to learn things and to be connected.

My son had a baby recently that had a very rare medical condition and she was able to get connected like with people within our own city. It’s like before the internet and before like technology she could have lived in the same city and not ever known that there were people in 20 miles away that she could talk to and relate to. And so I think that’s really special and really important because just like I talked about finding the disability community for myself, it was kind of just as important for my parents to find that as well.

And on the flip side of that,  if you’re a parent of a disabled kid, find them places to be with other disabled
kids, because I wasn’t able to. Not cause my parents didn’t want to, but that just didn’t happen. Like if it existed, they didn’t know about it. In a way, my parents were innocent; like they didn’t know. Once a year I saw other kids on the east coast that might kind of have been like me in a sense. It wasn’t like an all day everyday thing which is kind of why Brandon and I hope to build this playground as a place that disabled kids and non-disabled kids can be together and learn and play and just interact.

Like I don’t want my kids to —  since I’m disabled — to not understand that a disabled person can use it besides me. So I just want people in general to have community and have like a sense of belonging in all circumstances, and not just like in their special needs classroom at school, and then they don’t have
anything else all day every day.

Chayah: Thank you. Once again I’ll just say that was really well put. Hannah, I just wanna thank you so very, very much for taking the time to meet with me. Taking the time to create the presence that you have online for, you know, for all of the people out there who benefit from your humor and your insight and your presence.

Again, I’m just gonna hold your book up for everyone out there: “I’ll Pray For You and Other Outrageous Things Said to Disabled people”. We didn’t even talk about your amazing animals. That’s like a whole other, it’s like a whole other conversation that you represented in your book. I also grew up with a pig, a not mini pig. So we could talk about that.  I hope you have a really wonderful afternoon

Thank you this has been so fun.


Green Mountain Disability Stories is the monthly podcast of the UVM Center on Disability and Community Inclusion (CDCI). Each episode features a conversation on some aspect of disability, by and with people with disabilities and their families and advocates. The views of guests on the podcast do not necessarily reflect those of the CDCI.

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