Cajun Roots, Chronic Illness, and Campus Advocacy with Josephine Faulk

In this episode of This Ability Podcast, Mary sits down with Jo Faulk, a disabled student leader, advocate, and future educator whose lived experience has shaped her understanding of disability, resilience, and voice. Jo reflects on growing up with disability, the influence of her mother’s disability on her own journey, and why advocacy often becomes an “inherent skill” for disabled people. From navigating early self-advocacy to managing the emotional labor that comes with speaking up, Jo offers an honest look at what it means to advocate for yourself while also standing alongside a broader disability community. 

The conversation also dives into education, leadership, and systemic change. As a history student pursuing teaching certification and the president of her college’s disabled student organization, Jo shares her perspective on where the education system continues to fail disabled students—and how it can be reimagined with disabled voices at the center. She discusses campus advocacy, intersectionality across disability, gender, religion, and society, and what she hopes the disability rights movement prioritizes in the coming decade. This episode is a powerful reminder that disabled students are not just navigating systems—they are actively shaping the future of them.

Transcript

Mary Baudoin (00:00):

All right, thanks everyone for joining us today for This Ability Podcast. I am your host and producer, Mary Baudoin. And today we have our guest, Jo. Thanks so much for being here today, Jo. Tell our audience a little bit about yourself.

Josephine Faulk (00:11):

Yeah, I grew up in Maryland, but my mom's from down here. My mom's side of the family is very Cajun. She grew up in New Iberia.

Mary Baudoin (00:21):

So you grew up in Maryland though?

Josephine Faulk (00:22):

Yeah. We came down here every summer to visit family and everything.

Mary Baudoin (00:26):

All right. So let's just go ahead and jump into your personal experience with disability.

Josephine Faulk (00:32):

I have Ehlers-Danlos syndrome and POTS, so postural orthostatic tachycardia syndrome.

Mary Baudoin (00:39):

Let's talk about the first thing you said. Say it again.

Josephine Faulk (00:41):

Ehlers-Danlos syndrome.

Mary Baudoin (00:43):

Okay. What is that? I've never heard of it.

Josephine Faulk (00:45):

It is a bit rare, but I am surprised because it's getting more well known lately, I think. But Ehlers-Danlos is, it's a connective tissue disorder basically, and it has a ton of comorbidities and stuff. POTS is one. But basically, so I have a lot of joint issues, a lot of joint pain. I've had a lot of issues with my spine. When I was in my junior year of high school, I got a herniated disc and I ended up having to have surgery for it. There's steps that they take before surgery, but none of them really worked. We kind of figured that that was going to happen because that's the same thing that happened with my mom, but they were like, "Well, you still got to go through it." I'm like, "Great."

(01:31):

And then I currently have a herniated disc in my neck. I don't think I've been officially diagnosed with it, but my mom has this degenerative disc disease, which is common with EDS.

Mary Baudoin (01:42):

I guess that means the bones at some point start deteriorating?

Josephine Faulk (01:47):

Yeah, the discs in between the vertebrae are degenerating and they're really funky.

Mary Baudoin (01:55):

Now how do you cope with that? I mean, do you go through any kind of therapy? Do you find yoga helps? Do you have to take medication?

Josephine Faulk (02:02):

Yeah, I have chronic pain, so I have pain management ends for it. Me and my heating pad, we're like this.

Mary Baudoin (02:11):

Best friends. Let's talk about advocacy because I know that you are an advocate. You and I have been friends, we've never met in person, right? But we've been friends for a little while on Facebook. And you mentioned that you do like to self-advocate. So how has that experience been like for you? What have you done as far as any type of advocacy work?

Josephine Faulk (02:37):

Well, I mean, it's been a pain in the butt, as it usually is.

Mary Baudoin (02:37):

Yeah, sure. Do you find that for school you had to advocate for certain things?

Josephine Faulk (02:40):

Oh yeah, definitely.

Mary Baudoin (02:41):

Yeah. Like what? Can you give us some examples by any chance?

Josephine Faulk (02:44):

Well, when I was in high school, we had to go through the thing of getting the 504 and everything for both the physical stuff and getting around and absences because of pain and stuff. And then also accommodations for ADHD. And at college it's been a lot and especially because the transition from high school to college, you've got to do a lot more stuff. I was always involved, but college, they really want you to do it.

Mary Baudoin (03:14):

Yeah, exactly. Now what college did you go to?

Josephine Faulk (03:18):

I go to Loyola University, New Orleans.

Mary Baudoin (03:21):

Loyola. Okay. All right. And I'm not too familiar with their campus, but it is an older campus. And I do find that there's some buildings that probably are not as accessible as they could be. Do you find that to be the case?

Josephine Faulk (03:32):

Yeah, because I use both a cane like I'm using now and I use typically when I'm at school or if I have to walk long distances, a wheelchair. So New Orleans, this college, New Orleans is a nightmare for being in a wheelchair because number one, the sidewalks that have no maintenance done on them, it's like some of these pavements is like, you need to go rock climbing because the tree roots have fully broken it all up.

Mary Baudoin (04:03):

Listen, and I know I have some listeners that are like, "What?" Okay, because this is an international podcast, right? But, a lot of our listeners are from the Louisiana area and you guys know Louisiana, I mean, we love New Orleans, but it is an old city, and with an old city, and of course it's below sea level. So there's going to be some structural issues and infrastructure issues with roads. And particular, I don't know why, but around Children's Hospital there, I mean going, I think the zoo is not far away, the Audubon Zoo. The road is, I mean, I remember I have a van, right? A handicapped van. And this is my second van that I'm in now, but the first one I had, it would sit low to the ground. I'm telling you, I know that I have left parts behind on that road.

(04:57):

I hit something and I'm like, "Oh my God, I think the transmission just fell out." Because the roads were so bad in New Orleans. They're horrible. Sidewalks, crumbling, not ADA-compliant at all. There's not many buildings in New Orleans that are ADA-compliant.

Josephine Faulk (05:14):

Yeah. Me and my friends went out to the French Quarter one time and it was interesting because the French Quarter is probably one of the oldest parts of the city. So it's all the historic buildings and basically everything has a step. And so, I mean, I don't know if they're legally supposed to, but they should have like a little ramp, but it's only like one store that we went to actually had it. So me and my friends were basically just like, "Lift the front wheel, lift the back wheel."

Mary Baudoin (05:45):

Yeah. I've been there, done that with my daughter. She's in a chair and we've had to do the whole lifting thing, which is not very accommodating. When you're trying to, for us, going to New Orleans is like a little mini vacation, right? It would be nice if everything was just wide doorways. And New Orleans too, the buildings are so cute and the entryways are so narrow. Little two-foot wide doors, really cute, can't get through it. So yeah, accessibility in New Orleans in particular, I'm sure with Loyola, like you said. Did you finish college? Did you graduate? Are you still working on getting your degree there?

Josephine Faulk (06:20):

I'm a junior.

Mary Baudoin (06:21):

That's great. What is your major?

Josephine Faulk (06:23):

History.

Mary Baudoin (06:24):

History. Me too. I'm a grad student at UL. And you're studying history and pursuing a teaching certificate. So what drew you into that field?

Josephine Faulk (06:33):

Well, getting into history was actually pretty connected to my disability because I did... Since I was two to since I was maybe 17 when my health was really going downhill, I did dance. When I was younger, that's what I wanted to do when I grew up. And so my mom got diagnosed with EDS when I was younger and we knew it was a genetic thing and I'd kind of shown some of the signs. So we knew it was a possibility, but it's like you don't know exactly how it's going to be or what's going to be the main issues and all. So it was kind of in the back of my head, but then once my health started going downhill, I had to really grapple with that and be like, "What do I do now?" I was kind of like, "Well, what do I enjoy outside of dance and things like that?" And I started getting into history and Cajun history. I do a lot of genealogy and stuff.

Mary Baudoin (07:28):

I was going to ask you about education and why do you think that's an important issue for students that have a disability?

Josephine Faulk (07:36):

Yeah. I got into education because my grandmother down here, she worked in the schools as a substitute in New Iberia for many years and she worked a lot in, specifically for special education classrooms because she was willing to go in there and all. There's a lot of subs that don't want to deal with that. And then my mom was a paraeducator in Maryland for a few years and she's currently going back to school to be certified as a special education teacher.

Mary Baudoin (08:11):

Good for mom. That's awesome.

Josephine Faulk (08:12):

So education's kind of always been around me in the family and something I've been interested in. And in some ways it's like I love history and I love talking about history. So teaching, I get to tell other people about history all day.

Mary Baudoin (08:26):

Right. No, that's great. I love that. I love that for you. What do you think is lacking? If you're a student in elementary school to college and you have a disability, do you feel like there's any kind of a gap between the educators and the students?

Josephine Faulk (08:44):

Yeah, it's a lot. And I've kind of seen it from having people that work in special education in my family and then also seeing stuff from people that have been in special education online and in communities and stuff and then learning about it myself in my classes. I took freshman year, learners with special needs is one of the required classes. I mean it's a big issue. There's a lot of things, I mean the history of special education and everything is... It's a lot. The primary approach to special education was full segregation from everyone else, even to the point of separate schools and things like that. You know, that wasn't that long ago, IDEA, Individuals with Disabilities Education Act, the passage of that wasn't that long ago in this grand scheme of things.

(09:41):

Education can move kind of slowly, I think. Loyola has a law clinic and what they do is for low-income people, they specifically do special education cases. So they help parents get schools to do what they're supposed to be doing.

Mary Baudoin (10:01):

I love that.

Josephine Faulk (10:03):

I thought that was really awesome.

Mary Baudoin (10:04):

Now you're the current president of Loyola's Disability Student Organization, is that correct?

Josephine Faulk (10:09):

Yeah.

Mary Baudoin (10:10):

Yay. What is the name of the organization and what do you do?

Josephine Faulk (10:13):

It's the Disabled Student Assembly. We're actually new. I was involved in, I want to say the latter half of freshman year, beginning of sophomore year, I was involved in starting it with some other people that had been pushing to get it started for a while. So we're pretty new, but we've done some stuff. We're planning to do a lot of fun stuff with our members and all, movie nights. We have this thing that we're planning on doing in a couple of weeks, or we're going to have, we're calling it info dump night. So it's like if you've got something you want to talk about, you can make a PowerPoint or whatever and come and give your lecture.

Mary Baudoin (10:55):

Oh, I love that. Free speech, right? No, that's awesome. Do you know how many students approximately go to Loyola total? I'm sure it's a few thousand, if not more.

Josephine Faulk (11:07):

It's probably a couple thousand, like in the 2,000, 3,000 range.

Mary Baudoin (11:10):

Okay. How many students are in this particular organization? Is it kind of a small group or are you guys... Because I'm just wondering how many students with disabilities attend Loyola?

Josephine Faulk (11:22):

It's pretty small. We're again, working on doing events and promoting and everything, but I think we have a decent amount of students at Loyola that are disabled.

Mary Baudoin (11:36):

And that kind of ranges from someone that has autism that could be on the spectrum to someone who is in a wheelchair, so it could be a variety.

Josephine Faulk (11:43):

Mm-hmm.

Mary Baudoin (11:44):

Okay, gotcha. No, that's good. I think that we can almost sort of copy and paste that idea at UL because they have a program called the Life Program, which is Learning Is For Everyone, and it does cater to individuals with special needs, but I don't think that university-wide, there's an organization for people with disabilities. And it would be great if they did that, like some type of a club to get together for a bowling night or a movie night, like you said, that would be fun, definitely.

Josephine Faulk (12:25):

We did an event last year, some of our members, where they rented wheelchairs and we went into this one outdoor area called the Palm Court. We basically set up a little obstacle course and so as people are walking by, we're grabbing them and being like, "Hey, come see what it's like to use a wheelchair."

Mary Baudoin (12:47):

I love that idea.

Josephine Faulk (12:50):

It was very fun I think for the people that were there and also for us because most of us that were there use or have used wheelchairs so we're teaching them how to do wheelies and between us-

Mary Baudoin (13:01):

How funny is that?

Josephine Faulk (13:02):

... having wheelchair races.

Mary Baudoin (13:03):

What was the feedback like? I'm sure you had people saying different things, but did you learn anything from what the people were telling you? Like, "Okay, that was a great experience, It was eye-opening." Or, "I hated it." What'd you hear?

Josephine Faulk (13:20):

People seemed to really enjoy it. We had various people telling us about, "Yeah, I have a family member that's in a wheelchair and I see how difficult it is. I think this is awesome." And then people that have never really been exposed to life with a disability being like, "Wow, I didn't realize it was this difficult."

Mary Baudoin (13:43):

Right. And you know, I mean, just food for thought, maybe have a wheelchair a day, Loyola, where they have to go to class in a wheelchair, see how that pans out, meaning they've got to spend the whole day. They got to go to the cafeteria that way. They got to use the bathroom with the chair.

Josephine Faulk (14:00):

Yeah, we're working on some events like that.

Mary Baudoin (14:01):

Wouldn't that be fun? Fun, scary, eye-opening.

Josephine Faulk (14:06):

It was interesting that when they were trying to do the event, because we had DSA at that point, but they were doing it through the Student Government Accessibility Committee because they had more money, obviously.

Mary Baudoin (14:19):

Right, right. Yeah.

Josephine Faulk (14:22):

And so they were trying to like propose it and everything and the student government was trying to shut it down because they were worried it was offensive and we're like, "We are disabled. We're the ones trying to put on the event. What do you mean?"

Mary Baudoin (14:40):

This is something that kind of came to mind because I'm actually in a history class right now that's studying, it's the 20th anniversary of Hurricane Katrina and I'm watching one of the, I think it's called Race Against Time on Hulu about Hurricane Katrina and it talks about the timeline and interviewing people regarding the timeline and of course evacuations and the lack of New Orleans being prepared to issue that mandatory evacuation. Do you know if Loyola has an evacuation plan, if there is a hurricane and especially for people with disabilities, you don't want to see anyone be left behind in case there is another Hurricane Katrina. Do you know if they've had any kind of plan or talked to students about that?

Josephine Faulk (15:30):

I don't know too much about the specifics of it, but I know they do have plans and when you come in and every year you have to fill out the evacuation plan thing on the thing. So it's like, "Do you have somewhere to go?" All those sorts of things.

Mary Baudoin (15:37):

That's great. That is great to hear. And when you mentioned that, I was like, "Yeah, I think," because my daughter receives the Medicaid services, her support coordinator does give us that form and she usually calls us. If there is a storm, "Okay, do you have a place to go?" So that is good and I'm glad that Loyola has that in place. Do you hear any complaints or issues from the students who are disabled? What is their biggest complaint on campus? Have you heard anything that's one common thread that you hear a lot about?

Josephine Faulk (16:38):

I think a lot of the stuff that we've been working on lately and that people have been working on... Our advisor is Professor Crago and he's a professor and he's also a member of staff and working in tech stuff and he's been here for years and he uses a wheelchair and so he's really been pushing the administration for a long time on a lot of physical accessibility issues. There's a whole list that we, me and some of our members and him had put together all the accessibility issues on campus and given it to the administration. It's floating around. Are they going to do anything about it?

Mary Baudoin (17:24):

I hope that they do, especially, and he's a professor so you would think he'd have a little clout, right?

Josephine Faulk (17:31):

You would think.

Mary Baudoin (17:35):

A professor in a wheelchair no less, but I will say that the problem that you guys are experiencing is not uncommon, because there are a lot of older campuses throughout the United States. I don't know how many there are, but I guarantee probably at least half, probably if not more, are not as accessible as they should be. Because you don't hear about brand new campuses being built, right? Of course there's room for improvement I'm sure with a lot of buildings.

Josephine Faulk (18:11):

Even in new stuff, I was looking at schools because I wanted to go to college in Louisiana and so I was looking around doing tours of them and all. And we were at LSU and the tour guide is telling us about, oh, it's this big brand new science building or renovated or something like that. And we try and go in the building and the button doesn't work. And at Loyola they just finished this new chapel thing, which is mixed reviews, mixed reviews, but it's also, it's brand new and well there was a whole hullabaloo that happened surrounding it, but our director of the Office for Accessible Education during all this thing was like, yeah, I came here to look around and I have an entire list of all the ADA violations in this place. Guys, what are we doing here?

Mary Baudoin (19:16):

Yeah, what are we doing here? Yeah. And Loyola, is it a private university?

Josephine Faulk (19:22):

It is private.

Mary Baudoin (19:23):

Private, okay. Yeah.

Josephine Faulk (19:24):

It's also, they just renovated the Danna Center, which is the main student building with the cafeteria and everything. It's also between the dorms and the academic buildings and everything. And so on the backside of it, facing the residential buildings, there's two entrances, there's one with steps and there's one that's a ramp, and so they renovated it and so the door at the top of the ramp, it used to be a sliding door with a button.

Mary Baudoin (19:56):

Convenient.

Josephine Faulk (19:57):

Exactly. You know what they did when they did the renovations? Took the door out. I think they might have scooched the entrance over a little bit and that might have been why they did stuff, but they took the sliding door and the button out and they replaced it with a pull door and it pulls out onto the ramp so there's no space to maneuver and they completely took out the button.

Mary Baudoin (20:21):

They must have learned from somebody at UL because we have that same situation in, is it Rougeou Hall? I can't remember the name of the building. I want to say it's Rougeou Hall. Makes no sense. They literally have a concrete ramp that was made, and my friend Laney, she uses a scooter to get around. She has cerebral palsy. She just graduated in accounting this past semester, but she was telling me that they have a pull door and this might, but if you're in a chair, you'll understand, right? If they would have put the handle on the door to the right of the door where the ramp is, she might have been able to get in because sometimes you got to practice the whole, the door is leaning on my chair, but I can kind of get in. Well, the handle is on the left side, meaning so she's got to go across the door.

(21:16):

Well, the problem is that the platform that she is on is too skinny. And if she has to back up her chair, which she would, to get on the other side of the door, she would tumble down the stairs. "Hello, that's not really accommodating for somebody in a chair."

Josephine Faulk (21:35):

Ours isn't that bad.

Mary Baudoin (21:36):

Ours is bad.

Josephine Faulk (21:39):

Because it has railings, so you're not going to fall off, thankfully.

Mary Baudoin (21:43):

Well, somebody was thinking.

Josephine Faulk (21:47):

But it does have the handles on the left side. So I've got my joystick on the right side, I would use my right hand. So it's like, I got to do this and then reach across and back up and yank this really heavy for no reason door.

Mary Baudoin (22:01):

You know people, sit in a chair and if you're going to design something that's accessible, use it, practice it, right?

Josephine Faulk (22:09):

And it's so crazy. It's specifically the accessible entrance that's supposed to be designed for wheelchairs and they were just like, "There's an accessibility feature here and they don't need it."

Mary Baudoin (22:22):

Just sit outside. We'll get you a speaker. You'll do it via Zoom.

Josephine Faulk (22:26):

So that's what we've been working on at the start of this semester was they added this new barriers to access form that you can submit stuff about accessibility concerns and all. Nice. And so we were submitting a bunch of those. And so apparently facilities is planning to put a button on.

Mary Baudoin (22:44):

Good. Well, we'll follow-up with them for sure.

Josephine Faulk (22:48):

Have they given us any timeline?

Mary Baudoin (22:52):

No.

Josephine Faulk (22:52):

I emailed the OAE director a couple of days ago and I was like, "Have they given a timeline on that?" She's like, "Not yet."

Mary Baudoin (23:01):

Yeah, yeah. Well, we've talked a lot about accessibility, but you know, even, okay, Loyola's a private university, UL is a public university, but my family this past summer, we did a Disney cruise, right? It was amazing. However, and I've sent an email to Disney, I'm waiting to hear back because I've heard that they are good with customer service and they usually are. We stayed, of course, on the cruise ship. We were on the seventh floor, I believe. And I think that that was maybe, if I'm not mistaken, the floor that's designated for people in wheelchairs, right? Which is great, amazing, because we get to meet other people in wheelchairs and strike up a conversation because it's a good way to get to know someone better. And when you have a disability, you're kind of in that world, right? And you can kind of friend people within that same group because they're different, but they're different, they're the same to you, so to speak.

(24:09):

You don't really see the differences. And the problem with the corridors on the ship is they probably, and they probably have a schematic, a blueprint of how many feet the corridor is supposed to be. Well, that's great. It looks great on paper, right? So many inches it's supposed to be. However, throughout the day and night, there must have been at least 30 to 40 housekeeping carts located outside the room. I don't know why housekeepers, by the way, they leave the cart in the hallways. I'm going to have to ask a friend about this. Why do they leave it in the hallway? Why don't they just bring it into the room? But anyway, I digress. With the cart in the way, it takes away at least a foot, maybe 16 inches or so where you can't pass with the wheelchair. It's tight. It's tight. With my daughter's wheelchair, it was tight.

(25:06):

Now, the big problem was that... So it's the accessible floor, right? So someone else in the wheelchair is coming at you from probably 800 feet away and we're coming up, well, we can't cross each other. It's not wide enough. And then you throw in a few housekeeping carts where you're just having a whole field day of accessibility right there, right? So one of us has to play the backup game. And then if you've got the housekeeper that you can actually see, the housekeeper, then you can actually back that person up into that room. If the door is wide enough, some of them are not because the entire floor is not made for accessible people. So it's just bad and it's like Disney, really, you could do better. Disney, we're on this, I'm sure, multimillion-dollar ship and I'm sure they consulted with people to have the accessibility done, but it's wrong. It's not practical. On paper, it could be beautiful.

Josephine Faulk (26:12):

They always do the bare minimum that's required. And it's like if they're designing a building, it's like they design the building and then they're like, "Oh, what do I need to add? Slap a ramp on." That's my biggest thing is that the wheelchair ramp so often is in the back of the building next to the trash cans.

Mary Baudoin (26:31):

How welcoming is that?

Josephine Faulk (26:33):

Exactly.

Mary Baudoin (26:34):

I'm just going to blend you in with the trash, right? How horrible is that?

Josephine Faulk (26:38):

Tell me how you really feel.

Mary Baudoin (26:39):

Yeah. No, this is true. This is very true and so relatable, Jo, things that you're saying, it's so relatable and I know that it's touching a lot of people right now because they're like, "Yeah, she's preaching to the choir here." Beyond advocacy and education, you've talked about your interests being disability and society, religion and gender. How do those play into your life?

Josephine Faulk (27:12):

I guess it depends on which one.

Mary Baudoin (27:14):

Yeah. Yeah. You can break down each one, you can group them together, but let's touch on society and religion. How does that factor into your life?

Josephine Faulk (27:25):

Yeah. So Loyola is a Jesuit Catholic school, so there's like a lot of stuff going on and I'm involved in a fair amount of things, and so that's been very interesting. Navigating religion and religious spaces as someone that's disabled is very interesting.

Mary Baudoin (27:48):

Okay. Do you consider yourself to be a religious person?

Josephine Faulk (27:51):

Mm-hmm.

Mary Baudoin (27:51):

You do. Okay. Okay.

Josephine Faulk (27:54):

I attend a Quaker meeting here in Lafayette.

Mary Baudoin (28:01):

Okay, you do. Nice. Nice.

Josephine Faulk (28:02):

And so it's like, I've had this thing at the school where they wanted to do a disability mass in the new chapel that isn't accessible. And I'm like, "Hey guys, maybe consider this for more than five seconds."

Mary Baudoin (28:22):

Yeah.

Josephine Faulk (28:23):

And it's just a common thing that you hear about in disabled communities is, you're just existing on the street and somebody's... "Can I pray for you?"

Mary Baudoin (28:33):

Right. Yeah. Yeah.

Josephine Faulk (28:35):

Maybe let's not do that.

Mary Baudoin (28:37):

Yeah. You don't have to call people out specifically, right? It can be just in general because the disability... When you see someone in a chair, you shouldn't see the chair. You should see the person, right?

Josephine Faulk (28:49):

Exactly.

Mary Baudoin (28:50):

And it's kind of like, yeah, I have a disability, but there's so much more to me than that.

Josephine Faulk (28:55):

And it's that assumption too, that you're in a wheelchair and so obviously that's the biggest thing in your life. That's the biggest problem in your life. Obviously you want it gone and so I'm going to do... It's very self-serving.

Mary Baudoin (29:10):

Well, and I've seen a word floating around the disability community lately and I'm in my 50s, right? So I need to educate myself. Of course, I'm always learning new things and I'm always willing to learn. There's different genders out there now and different things, but there's a word that's come up that's called ableism, and I think that's kind of what you're talking about. It's kind of like that syndrome of people thinking, okay, well, obviously you're in a chair, you can't do anything for yourself and I need to help you. Now, hey, it's great if you want to open the door for me, but don't expect that I need you to, right? But, when it comes to buildings, yeah, you need to make it accessible because if I physically can't get into the building, that's a problem.

Josephine Faulk (29:57):

Yeah. And it's like, it was that That mass thing was so frustrating to me, because I've had really good experiences with a lot of the professors and resident ministers and other people. And so it was just in regards to other issues and things like that. I say the Jesuits are the fun Catholics.

Mary Baudoin (30:24):

But all Catholics are fun, right? I grew up Catholic. They like to drink.

Josephine Faulk (30:29):

The Jesuits are just very chill and all. But then it's like you kind of get hit in the face with, "Oh, I'm still not welcome here because of my disability." It's still not being considered. And it's really frustrating too. There's a lot of really interesting stuff in the field of disability theology and stuff.

(30:51):

And there's this one story that I think is really interesting, both in a spiritual/religious sense and just in a historical sense.

Mary Baudoin (30:59):

Oh, great. Tell us all about it.

Josephine Faulk (31:01):

So in the book of John, so Jesus and the disciples are walking along, and the story it goes, so Jesus and the disciples are walking and they see a man by the road that was blind from birth. And one of the disciples asked Jesus, "Rabbi, who sinned, this man or his parents that he was born blind?" And Jesus says, "Neither this man nor his parents sinned that he was born blind. He was born blind so that the works of God might be revealed in Him."

Mary Baudoin (31:37):

Oh, wow. That's beautiful.

Josephine Faulk (31:37):

And it's like because it is really impossible to understate how heavily that idea of disability as the consequence of sin or divine retribution has been historically entrenched in our society. And I think it still underpins a lot of ableism and issues in our society today. And it's so incredible and radical that back 2,000 years ago, Jesus was like, "No, that's not correct. I'm going to push back on this." And really affirming the value and dignity of disabled people.

Mary Baudoin (32:12):

Absolutely. And it's not just about your physical attributes, but your inner beauty and how we can learn from people. My daughter's nonverbal and I learn a lot from her. So even though I don't hear her words, I can monitor her, I can evaluate her, I can assess her and learn. And I think we can all do that with anyone with any disability. So yeah, definitely. That was a great story. Thank you for sharing that. How do you see the perception of people with disability or the, I guess disability in general evolving in society? In the next few years or in the future, what would you like to see for people with disabilities?

Josephine Faulk (32:58):

I think we're moving forward in some ways. I think the mental health and neurodivergence communities have made a lot of really great strides in the recent past. I see just in the things you see on social media or events on college campuses and things like that, there's much more of an awareness to be aware of neurodiversity and things like that, which is good.

Mary Baudoin (33:30):

That's good. Yeah. Yeah, absolutely. And mental health, I mean, that's something, back in my day, people would laugh at you if they knew you were struggling or you had anxiety. They wouldn't call it anxiety, "Oh, she's crazy or whatever." And it's like, no, there's a real diagnosis there. And I'm hoping that things like bullying are going away. I don't know if they are or not, but it's not cool to obviously bully someone with a disability, but I'm sure in some rural parishes or areas that it's probably still going on. But I think if parents can just try to educate themselves and educate their children on, even if they don't have a child with a disability, learning that others, to appreciate them for who they are and that your child can interact with someone with a disability. You don't have to keep them in a bubble of keeping them around children that look and sound just like them, right?

Josephine Faulk (34:30):

Yeah. I think that's like... I mean, returning a little bit back to the topic of education, one of the things that I think is... And just in society in general, I think does such a disservice is the ableism and discrimination in the workforce. And when we were in Maryland, my mom, I saw my mom go through this where it's like she would apply to jobs that, because she's visibly disabled, she uses a cane, and she would apply to jobs that she... Like a call center or something that doesn't need any sort of physical things. And she had... One time she walked into an interview and a lady, the interviewer saw her cane and her face went sheet white, just because of the sight of her cane.

Mary Baudoin (35:17):

Oh, wow.

Josephine Faulk (35:18):

And it's like the main... the reason she was able to get a permanent position as a paraeducator, because before that she was only able to get temporary positions was because it was during COVID and they couldn't tell that she was disabled. And then when she went in, they basically threw a whole fit over her being disabled. And it actively robs children, disabled kids, specifically in education, it specifically robs disabled kids, especially in the field of special education, from being able to see people like them that are living their lives and in positions of authority and also having people that they can connect to that understands their issues working with them.

Mary Baudoin (36:01):

Yeah.

Josephine Faulk (36:02):

That's one of the biggest issues with special education is that it's so paternalistic and it's really run by able-bodied people. There's no disabled voices, which is what is needed.

Mary Baudoin (36:15):

Absolutely.

Josephine Faulk (36:16):

Both voices of the students and of disabled adults.

Mary Baudoin (36:20):

Absolutely. You really hit the nail on the head and I think from someone that I've taken some deaf culture classes, it's important to know, of course I've learned American sign language, but it's not enough for me to just know the sign language. It's important for me to know the history of deaf people, and learning all about the Milan Conference and how sign language was banned for many, many years. And they forced people that were using sign language to learn oralism. They had to learn to speak. And it's like, what? They're deaf. How can they hear themselves? But y'all, that was a thing, right? We don't want to go back to that. We want to keep people... We want to keep at the forefront of disabilities. And it's good to know the culture and what they've been through because there has been that... There are too many documentaries on people that have been deaf and the struggles that they've gone through in the past.

(37:19):

I think as a society, a lot of us don't know that. We didn't know that Alexander Graham Bell was married to a deaf woman and he... Of course he invented the telephone, but there was some issues with him. He kind of forcing his wife to learn oralism as well, which is how he actually led to inventing the telephone. He was trying to invent concoctions to help her hear. Yeah. I almost kind of view her as an experiment. Yeah. Yeah. So just things like that and learning more about Gallaudet University and Deaf President Now, that movement that was huge. And deaf people have a lot of pride and I've had to learn and learning from deaf professors as well at UL, we have two that are deaf and then two that are hearing and it's good for us to learn though, to communicate directly with them so that we can learn the culture so we're not just learning from the ones that are hearing.

(38:21):

And they push for people to learn, not just online, but learning from a deaf person because when you're hearing, you haven't experienced it, you don't know what it's like to be deaf, and it is cool to learn from deaf people, even if they have someone who is hearing that is helping teach, that's cool. But just get some feedback too from someone who is deaf to say, "You know what? Actually we use this shortcut to sign this." Or just kind of integrating that culture, the experience that they've had. I think that's cool. So yeah, that definitely applies to the classroom for special ed and people with disabilities, for sure.

Josephine Faulk (39:08):

One of the main solutions and things that can move things forward is interacting with people that are different from you. And so because of this history of segregation of disabled people and the physical barriers to disabled people being able to access common spaces and the societal barriers to disabled people being able to get employed or interact with other people, it really keeps... It maintains that segregation.

Mary Baudoin (39:48):

It does.

Josephine Faulk (39:48):

And that's such a part of the problem is that people just have no idea about disability issues, about accessibility. They never even think about it.

Mary Baudoin (40:00):

I'm listening to you talk and I can't help but think, you're such a bright young lady. Have you ever thought about running for office? Look at her. She's like, no. But seriously, I mean, I would vote for you, right? I mean, even if you start on a local level, I mean, because I can see that you're the person that's solution-oriented. You can address the problem, you can analyze it, but it'd be great to fix it, right? And I can see that passion in you. So if you ever do run for office one day, good luck to you, and don't forget about your friend Mary, whenever you're President of the United States or something, right? Let's talk about your actual medical condition, just going back to that. You also mentioned that you have POTS.

Josephine Faulk (40:52):

Yeah.

Mary Baudoin (40:54):

I had interviewed someone last year, Katie. She has POTS as well, and I forgot what it stands for, what it's about, but tell our audience briefly what that is.

Josephine Faulk (41:02):

Yeah. Postural orthostatic tachycardia syndrome.

Mary Baudoin (41:05):

Okay.

Josephine Faulk (41:06):

And so it can come from a lot of different things, it can come from viral infections. I think there's a lot of people that... It's getting more eyes on it now too, because a lot of people after getting COVID and long COVID develop POTS, but I specifically have POTS because it's a comorbidity with Ehlers-Danlos syndrome. And so basically what it is is if I stand up... Well, it's a dysfunction of... The symptoms manifest in the heart rate and things like that, but what it actually is a dysfunction of your autonomic nervous system. And so when you stand up, your blood pools, that's just gravity. And so normally your stuff is going to work and keep pumping it back through. But in POTS, something is off and it doesn't get pumped back up correctly and so it pools in the bottom of your body and you can get decreased blood flow to your brain. And so if you're standing too much, and it can be exacerbated by environmental conditions and other things like that. So if you're standing for too long, you can get reduced blood flow to your brain and pass out.

Mary Baudoin (42:17):

Oh wow. Is there some kind of treatment for that? Let's say you're standing up and then you feel lightheaded. What do you have to do? Do you have to lay down?

Josephine Faulk (42:26):

Yeah.

Mary Baudoin (42:27):

Wow. Okay.

Josephine Faulk (42:28):

I've laid down on floors many a time.

Mary Baudoin (42:30):

This is interesting. Poor thing. I'm thinking of public spaces too.

Josephine Faulk (42:36):

I had this one, it was freshman year I woke up and I had awful, awful back pain. I just didn't know what it was. Still don't know what exactly caused it, but I literally had to go to the ER and they basically did nothing. They were just like, "Take some Tylenol." Cool, man. Something that's going to help. My parents ended up coming in and so we ended up trying to go to a different ER to try and get them to do anything. And so at that point I started feeling like... We were sitting in the waiting room and I was trying to feel like... Well, it was actually after I gotten a shot. For whatever reason, after I get a shot or anything like that, it triggers my POTS. I don't know why. It might also be a little bit of anxiety because that can also-

Mary Baudoin (43:25):

Yeah, and maybe it increases your heart rate or something.

Josephine Faulk (43:28):

So I'll get POTsy and I literally have to be laying down on the floor of the ER.

Mary Baudoin (43:34):

Aye yai yai.

Josephine Faulk (43:35):

It was not fun.

Mary Baudoin (43:36):

That's not sanitary. I'm just thinking of like all the hand sanitizer I would probably put underneath you.

Josephine Faulk (43:42):

Yeah. And the POTS, so it's different for everyone because there's a couple different types and stuff, but I have a cocktail of medications so we've had to adjust it and all to manage my POTS and so that helps, but it doesn't... I still have various issues and anxiety and stress makes it a lot worse and I'm personally, there hasn't been studies on it, but it's a dysfunction of the autonomic nervous system and I'm very convinced that that has links to anxiety and stuff like that because my personal experience of it is different than a lot of other people's.

(44:27):

It's sort of like my brain is a runaway train and there's also this thing with POTS where you get adrenaline dumps because of the POTS and not getting enough blood flow and things like that, that your nervous system just dumps a bunch of adrenaline on you randomly. So there's just a lot of dysfunction going on with a lot of the things that are connected to anxiety and stuff like that. I think there's definitely something there that makes some nasty feedback loops.

Mary Baudoin (44:58):

So how do you deal with that? Do you have a routine every day to kind of deal with it or you just kind of take life as it comes as far as your condition?

Josephine Faulk (45:12):

It's really just one day at a time because that's one of the most frustrating things about my stuff is that it's not consistent. I can be fine one day and then it's a mess. I can just randomly have a flare, any number of things, the weather and all, can set things off. And so it's really frustrating. It's like, sometimes you make plans or something and then you wake up that day and your body's just like, "Actually, I think you should turn into a hermit."

Mary Baudoin (45:45):

Right.

Josephine Faulk (45:45):

Actually, I think we're going to be laying in bed dying all day.

Mary Baudoin (45:49):

Well, let me ask you, what does your diet consist of? Have you had to, or have you noticed if certain foods trigger it or anything like that?

Josephine Faulk (45:59):

I don't think there's specific foods that trigger it. There is, with POTS, it's good to eat a ton of salt.

Mary Baudoin (46:06):

Really?

Josephine Faulk (46:07):

Yeah. And a lot of POTS people will crave salt.

Mary Baudoin (46:10):

Interesting.

Josephine Faulk (46:11):

I can put a crap ton of salt on stuff and that's a normal level of saltiness for me. And other people will be like, "What?"

Mary Baudoin (46:19):

How does your blood pressure not spike after that?

Josephine Faulk (46:21):

Well, that's the point is that it would cause blood pressure and all that to spike in other people, but since we have this condition, it helps... I think it helps with water retention and things like that, which helps your blood vessels be able to constrict and pump lower blood easier.

Mary Baudoin (46:39):

So it's almost like it's got the opposite reaction.

Josephine Faulk (46:41):

Yeah, pretty much.

Mary Baudoin (46:41):

Because if I eat a lot of salt, example, crawfish boil, right? I try not to eat very often, right? Some people just love to devour the crawfish and yeah, it's fun, but the corn and the potatoes, there's a lot of sodium in there and after just a few minutes, my hands, my feet will start to swell up. Yeah. Sounds like though if you were to eat that, it would be just fine.

Josephine Faulk (47:07):

Yeah. I think my doctors have advised me to get at least a gram of salt a day, maybe two. I can't remember the specifics.

Mary Baudoin (47:19):

So instead of an apple a day, some salt a day.

Josephine Faulk (47:23):

Pretty much. I mean, that is the one benefit of POTS because I can't eat all the salty stuff I want.

Mary Baudoin (47:29):

Hey, welcome to Cajun food over here in Lafayette. We got a lot of that seasoning going on. I'll tell you that.

Josephine Faulk (47:38):

Yeah.

Mary Baudoin (47:40):

But we're kind of wrapping up our episode, but it's been such a pleasure to interview you and to meet you and to get to learn more about you. What is one message that you want everyone to learn from this episode? Yeah.

Josephine Faulk (47:56):

Hard question.

Mary Baudoin (47:57):

Yeah. Something that you see maybe in the disability future, whether it's college-related or just community-related people with disabilities, what would you want them to know?

Josephine Faulk (48:15):

I think one thing that I think about a lot is related to the neurodivergent and mental health things getting a lot of traction, which is awesome, but it's also, I do see sometimes threads in that movement or people in that movement, ignoring or downplaying physical disabilities as... One example is I think every physically disabled person groans whenever they see it, is when someone's trying to... Sometimes when someone's trying to make a point about mental disabilities and how they're ignored or whatever, it's like, oh, will people dismiss and downplay depression and stuff? You wouldn't say that to someone in a wheelchair. They do.

Mary Baudoin (49:00):

Yes, they do. You're right. Yeah.

Josephine Faulk (49:03):

And it's like there's...

Mary Baudoin (49:08):

Yeah, you're right. Yeah.

Josephine Faulk (49:10):

Not to go off on another tangent when we're wrapping up, but there's this thread that happened... There's this pattern that I see happening historically in a lot of advocacy and activism movements where it's like, once you get some... People that are closer to the norm or are able to get some progress, oftentimes some of those people will, in the hopes of achieving more for themselves will turn on the people that are less acceptable. And it's that sort of respectability thing. So they try to conform to the normal things as much as possible and being like, "Well, I'm different in this way and I know I'm pushing for this, but look, I'm normal in every other way, so it's fine." And so because of that, people that are higher needs, mentally disabled people or people with physical disabilities often get left behind and so it's like... And it never helps. It never actually works. It always will backfire on you.

(50:13):

And so that's the most important thing, and especially in the disability community where we just have this huge variety of people and experiences. You value and maintain that community and always be trying to learn more and always be trying to support the people around you and the people that are different from you because that's truly how we achieve things for everyone.

Mary Baudoin (50:42):

Right. I agree. All right, Jo. Well, it has been a pleasure to meet you. I want to thank you so much for being here today on This Ability Podcast. If you guys are enjoying our podcast, be sure to subscribe to our channel on Apple Podcasts, Spotify, and any other podcast network. All right. Thanks, Jo, again, for being here today and sharing your story.

Josephine Faulk (51:07):

Yeah. Thank you for having me.