EPISODE TRANSCRIPT
Content may be slightly edited for clarity.
Bey
Hello and welcome to So Curious, a new podcast from the Franklin Institute.
Angelica
In this season, Human 2.0, we’ll be talking to scientists and nonscientists about technology, innovation and the human experience experience. We are your host. I’m Angelica Pasquini
Bey
And I am the Bul Bey. But you could just call me Bey.
Bey
On today’s episode, we’re going to be talking with artist and prosthetic user Mason Carter. In Pennsylvania’s designated Assistive Technology Act programs Tech Owl.
Angelica
The funny thing about assistive technology is that the topic itself is so broad, right? So you’re like, what is that like? There’s so many different things. You know what it makes me think of is, “As Seen on TV.” There’s all these gadgets and handy ways to everyday solutions. So, oh, you’re going to take hot soup out of the microwave and it’s too hot. Here’s something to put on your hand.
Bey
When I think of assistive tech, the first thing that pops into my head is a cane or a walker. It’s kind of low-tech, but still very much assistive in a lot of different ways. And those little grabbers.
Angelica
Like something that might be very difficult for a person. There’s a very simple solution with assistive tech, and I think that’s a really cool way to think about it. It doesn’t take much sometimes, like what you’re saying about a cane, right? The cane has been around forever, forever.
Bey
Ability changes from day to day, and sometimes it’s not always about the person, it’s about the landscape, the environment that surrounds you. Here in Philadelphia, our sidewalks aren’t the best. Our roads might be even worse. It can be rough getting around, even for people who have the full capabilities of their limbs and legs. So Lord knows, assistive tech is super useful. And also, Philadelphia has one location, a rec center for the differently-abled community. And there’s been all kinds of dialogue around that in terms of its demolition, in terms of how long it’s going to be there and the funds and things like that. So assistive tech is really important. People need to have their needs met regardless of who they are.
Angelica
Yeah, for sure. And it’s also about making the environment around you work for you, rather than you having to edit yourself or edit your day. Add time onto your day to be able to get from A to B. Our world can be literally a smoother surface, both metaphorically and literally. I’m excited to talk more about assistive technology with someone who uses it every day. We’re going to talk to artist and prosthetics user Mason Carter about his career in art and his relationship with his prosthesis.
Bey
Mason Carter is the creator and Mayor of Blendini City, which is an ongoing artistic story about a city where all the buildings are alive and have their own personalities and feelings. Feeling devastated by the demolished treasures found around the city, he asked himself the question, what if buildings had feelings, too? He started to draw neighborhoods until he had created a whole world. He hopes that Blendini can serve as an example for how we think about future cities in a space that celebrates the past, present, and future. Mason Carter, welcome. Can you introduce yourself?
Mason Carter
My name is Mason Carter, and I am the creator and Mayor of Blendonia City.
Angelica
Which is an ongoing artistic story about a city where all the buildings are alive and have their own personalities and feelings. My favorite thing that I found when researching you is this little excerpt: “I created Blendini City to be an antidote to the fears I have about future cities becoming too inhuman, thanks to the corporate takeover of daily life.” So, Mason, can you talk to us a little bit about that?
Mason Carter
Oh, absolutely. So, more and more we’ve had this over-reliance on corporations. And when I talk about corporations, that’s a bit broad, but I think multinational corporations like Walmart, Amazon, and the like who are basically supplanting the role that community used to play, especially in our commerce. And so there’s a social aspect to commerce that’s being lost in current society, where when you actually are able to patronize local businesses and be able to walk around, you are forming relationships with the people that work at certain stores. And it’s not just about consumerism. You’re buying things, but you’re also forming relationships with people that you run into in the store, the owners, people that work there. In an ideal community, money is circulating around the town or the city as opposed to being extracted and just fed into this overall global corporation.
Angelica
How did you come up with the name Blendini?
Mason Carter
I was just inspired by Ritas, actually.
Angelica
Wait, Ritas?
Bey
Water ice.
Mason Carter
Yeah, water ice.
Angelica
Oh, amazing.
Mason Carter
If you were to do business with the city of Blendini, you’d actually be doing it with the city of Blendonia.
Angelica
Understood.
Mason Carter
Blendini is a colloquial term.
Mason Carter
So when I was coming up with it, so I just started out by doing doodles of buildings.
Angelica
How would you explain physically what Blendini is in this physical world?
Mason Carter
So right now its physicality is all based on its drawings. Right now, there’s no exhibition for it, although I have shown off the city before at the Neon Museum of Philadelphia. So I was exhibiting there for a while. And so you could go into the Neon Museum and actually see all the different neighborhoods. So when I draw the city out, I’m drawing either neighborhoods or building portraits. So I’ll focus on one building in great detail really quickly.
Bey
Switching gears, I definitely want to talk about your story in terms of the assistive technology that you use. Can you give us a brief backstory to the kind of assistive technology that you use, where you were before, and where you are today?
Mason Carter
So I’m an at-birth amputee. It was something that wasn’t even really easily detected in the womb and my ultrasounds. So I suffered from a birth defect called Amniotic Band Syndrome.
Bey
Okay.
Mason Carter
Amniotic Band was actually wrapped around my leg as it was developing. It literally stopped the development of my leg. So my leg actually looks quite different than the average amputee. That’s defined my journey a lot, because as an at birth amputee, this is the life that I’ve known.
Angelica
So your assistive technology, right? Specifically in your relationship with it, as you grow,…taller…?
Mason Carter
Yeah.
Angelica
How does this work now? You go to the doctor. What’s it like when you’re growing up?
Mason Carter
The times that I had to get the most adjustments were during my growth spurt, during puberty.
Angelica
Oh, man, you’re a tall guy.
Mason Carter
Yeah. I mean, there was a time where I was growing like crazy that required me going in every six months to get a new prosthesis. Every time I would have my leg cast into a mold, the mold would create the socket where my leg sits in. Through that, they’d make a new carbon-fiber leg. So every time, especially when I was growing, the fit could become a bad fit in a very quick amount of time.
Angelica
Yeah. And then you would feel that difference in your walking?
Mason Carter
When growing up, and I knew that I had to get a new prosthetic, there would just be certain parts that would really hurt. Because it’s just the shape of my leg is changing. There were times where I would have to get a new leg or other times where just little adjustments could be made. I’m a below-the-knee amputee. Since I’ve been in fourth grade, I’ve really had the same kind of leg each time. The tech itself hasn’t changed that much, and I think it’s just because of how revolutionary, carbon-fiber as a material is, and also the fact that a lot of these legs, especially on the foot, they’re pretty overbuilt, so they last a good amount of time. I’d say that if anything, what has improved has been the ability for the leg to withstand compound fractures.
Bey
Would you want to see them, start building in technology, like GPS, if you happen to lose it? Or maybe something that gives you reports and emails? Do you want to see technology built into these prosthetics or assistive technologies?
Mason Carter
What would be very cool is a tech that could keep track of your gait while you’re walking.
Bey
Is that like your stride?
Mason Carter
Yeah.
Bey
Okay.
Mason Carter
So how you walk? I remember one time I was going to see a chiropractor, and she observed my gait, and she said, if you keep walking like this, this will be an issue for you down the line as you get older. The things that I do that I was able to really do as a young person, I’ll walk on my knees or I’ll just crawl around. Hopping is a very nice, fast way to get around. But my prosthesist, when I was a young boy predicted that hopping would give me problems down the line. He’s absolutely right. Now I have to be very careful with how I do that, because now I really feel the pain. But to get back to your point, I think that an assistive technology to detect how you’re walking would be really good, and I hope that it already exists. Something that’s actually nice about my leg not having any electronics with it is that it’s more durable. When you rely on electronics, there’s an extra layer of fragility that you have to worry about.
Angelica
Yeah. It can malfunction.
Bey
Has it brought any emotional experiences that you have encountered yourself or from someone else? Essentially differentiating from someone who was born without a limb or someone who had to undergo the process of getting a limb removed. What’s the differences, I guess, is what I’m trying to ask?
Mason Carter
Yeah. The big difference that I didn’t have to go through, versus somebody that had to just have their leg amputated, is … Our brains have this entire map of our bodies, and so pantom limb is a huge problem that people have to go through when they’ve just lost a leg.
Bey
And is this something that you’ve experienced?
Mason Carter
I have not, because since I’m an at-birth amputee, my brain has mapped out my body and it’s always been my physical form. That’s the big difference.
Angelica
Now that you’re older and you have this lived experience that you can look back on and reflect on what went well and what you wish were different. When you see modern society and the way that people have access to assistive technologies, is there anything you’d like to see different or any points you have on that?
Mason Carter
I would love to see better access overall. One issue that I see is that it’s tougher for people to get into prosthetics than it used to be, because now you need a master’s degree in order to become a prosthetist. You could get a certificate, then get on-the-job training, and you could become an apprentice at an actual prosthetic shop. Unfortunately, because of the educational system, where more and more jobs are requiring advanced degrees, there’s less of a pool of people that are able to do this. There’s a need for schooling, but affordable certificate-based options would be…We need to go back towards that. And then, of course, the other thing is just the prosthetics are very expensive and for good reason, but it’s very unfair for people that become amputees, and then they can’t afford the $20,000. The cost and the amount of people in prosthetics, all that really needs to change, real quick.
Bey
I’m going to squeeze in this question. Just fill in the blank: the future of assisted technology is…
Mason Carter
Bright.
Bey
Okay. There you go. Thank you.
Angelica
I think it’s time that we should marinate on what we just learned. Time to reflect. What did you think of that?
Bey
Yeah. Mason Carter, that was really interesting. I love the art. And he’s up in the neon exhibit, the Neon Museum. His stuff is pretty built-out. He has a transit line. Did you see that?
Angelica
Yeah, it’s amazing. What a visionary and imaginative person. I really loved speaking with him. Ithat was so interesting to learn about the differences between being an at-birth amputee versus a person who experiences a trauma and loses a limb.
Bey
Right. In all these conversations in science and tech it’s always been about the baseline. And I thought that was really interesting, too. Where’s your baseline? Where are you starting from? And for him, it was at birth, the use of a second leg or limb, and his lower extremity was never there. But for other people, they started off with four ligaments and lost that use. And so now they have, what, phantom pains and their brain kind of maps out their body.
Angelica
That was really interesting. Phantom Limb syndrome. That was very interesting.
Bey
Mapping out the body is just so interesting. Yeah, something that really struck me. So if you lose a finger, your brain is still thinking, I got this little index here. Where is it? And trying to move it and wiggle it and perform X. Yeah, that was fascinating.
Angelica
It was $20,000 each time. He had a new life and he’s going through growth spurts. Come on. Most people cannot do that. I thought that was so eye opening. I mean, when do you ever get to learn about something like that?
Angelica
Okay, now we get to talk to even more people who can speak on assistive technology. Our last two guests represent Tech Owl. Tech Owl stands for Technology for our Whole Lives and is a part of Pennsylvania’s Initiative on Assistive Technology, a program to help people with disabilities and others to find and get the tools and technology they need. The services they provide include a lending library, free special phones, a used equipment program, and training about accessibility and assistive technologies for the home and the community. We’re speaking with Kim Singleton, who is the director of assisted technology programs at the Institute on Disabilities, and Thomas D. Augustino, outreach and training coordinator.
Bey
Hello to you both. Can you introduce yourselves?
Kim Singleton
Hi, my name is Kim Singleton, and I’m the senior director of assistive technology programs at the Institute on Disabilities, which is where Tech Owl is, at Temple University.
Tom D’Agostino
My name is Tom D’Agostino. I’m the outreach and training coordinator for Tech Owl programs at the Institute and stabilities at Temple University.
Angelica
Thank you guys so much for coming in today.
Bey
Yeah, we’re excited to talk to you, but to open up the conversation, could you just define assistive technology?
Tom D’Agostino
Assistive technology is any gadget, tool or device that increases, maintains, and improves anyone’s functional independence. And I also like to include that it’s action-specific. So assistive technology is inherently action-focused rather than disability-focused.
Kim Singleton
So the term assistive technology was actually coined back in the late 90s. The government needed a way to differentiate technology tools and gadgets for people with disabilities as opposed to the rest of the population, because they wanted to pay for people with disabilities and not for the general public. The term “assistive technology” really is an oxymoron, right? There’s no technology that’s not assistive.
Angelica
Right.
Kim Singleton
So assistive really speaks to who they’re willing to pay for. And the government has made a commitment to help people who have identified, and I’m doing air quotes, “disabilities.” They’re not going to get a smart home device, for instance, for somebody who doesn’t have an identified disability, but they may for somebody who does.
Bey
Speaking of the government, Tech Owl is a part of Pennsylvania’s initiative of assistitve technology, and a lot of states have these programs?
Kim Singleton
Techow is the designated assistive technology act program for Pennsylvania. The governor designated it about 30 years ago. Every single state and territory has an assistive technology act program, which means that there was an act passed by Congress that gave funds to these programs in each state that all started around the same time that the term assistive technology was coined.
Bey
Can you talk about its importance? And also is it enough?
Kim Singleton
It’s funny because think about 30 years ago and what technology looked like… Assistive technology was really thought to be kind of an outlier. It wasn’t mainstream technology. It was really special things. 30 years later, we see that a lot of things that were developed as assistive technology are actually mainstream technology. A good example of that is a voice-controlled remote or an Alexa. That all came out of research for assistive technology. But the general population said, hey, bring it on. We like this, and we want to incorporate this into our culture. Is it enough? No.
Bey
Of course not.
Kim Singleton
What we’re supposed to do is, we’re supposed to help people potentially get things that help them be more independent. Technology changes so fast that it really does take an army of people to keep up with it, which is what we do.
Angelica
I would love to talk about your social media outreach, what role social media plays in creating community around what you’re doing and raising awareness within assistive technology.
Tom D’Agostino
Something that I found uniquely interesting with Tik Tok and something that we’re all starting to really understand is that there’s, a very vibrant and live disabilities community. And something that assistive technology tackles is the normalization of disability and the destigmatization of disability. And it kind of makes everyone aware that this is something that just happens and we shouldn’t shy away from it.
Bey
Your website says for many people, technology makes things easier. For some, technology makes things possible. Can you expand on that a little bit more?
Kim Singleton
Sure. We stole that.
Bey
Okay.
Tom D’Agostino
Wonderful.
Kim Singleton
I don’t even remember who said it.
Tom D’Agostino
But it was an IT person.
Bey
Do you believe it? Yes.
Kim Singleton
It’s pretty ingrained in our culture that for everything, some things are inaccessible to people without a piece of technology to help them. We just moved into new offices. We’re part of the Institute on Disabilities at Temple University. And there’s been this thing called a supply chain shortage. And we haven’t been able to get the automatic door opener for our front door. So every day somebody needs to get there early and prop the door open. So our folks on our teams that use mobility aids can get in the front door.
Bey
Right.
Tom D’Agostino
And another example, because we do have someone on our team who is blind, how do you receive a text message if you can’t see your phone? Right?
Angelica
Yeah.
Tom D’Agostino
And so there is voiceover technology, and so your phone literally can turn, press and accessibility button to voice over. And then you can literally have your phone speak all of the content to you. Without that voice over on your phone, a person who is blind most likely would not be able to have any access to a cell phone.
Angelica
And like having access to modern communication so that you can talk with everyone to the best of your ability or listen to everyone to the best of your ability and be able to connect. And it makes me think of iCanConnect, which is amazing. So iCanConnect connects people with hearing and vision loss with equipment so they can make a phone phone call, send an email, access the Internet or use other forms of communication.
Kim Singleton
That’s a national program.
Angelica
Oh, cool.
Kim Singleton
That is supported through the FCC. And we are the Pennsylvania designee for the iCanConnect program.
Angelica
Great.
Kim Singleton
And it is for communication (hence the FCC), for people who have both vision and hearing loss. There are a lot of people in our society who have both vision and hearing loss.
Bey
How does Tech Owl increase autonomy? And why is this important?
Kim Singleton
Every person, because of their personhood, should have agency. And for some people, we can walk through the world that is built around us because we’re what the world was built for and for other people, the world wasn’t built for us. And so it’s a combination between the world changing, our society changing and becoming more accessible and becoming easier to navigate, and personal things that you can do for yourself. Like Tom was talking about voiceover on a smartphone. Well, you have to know that it’s there. There’s so much in a smartphone, you’re not going to know everything that’s there. I mean, I have so many apps on my smartphone that I don’t even open. And so part of what we do is we figure out what’s there today and how we’re going to keep up with what’s there tomorrow. I always say, and this is a little corny, but, you know you, and we know stuff, and together we will solve problems. Okay. So that’s very different from what we typically think of, which is the medical model where we are experts, and we’re going to tell you what it is that you need and what kind of wheelchair you need and what kind of… When that doesn’t really give the person with a disability the kind of agency — back to independence and agency– and control, that they deserve as human beings.
Angelica
Yeah. And it makes me think about the bottom line, which is money and funding. And it makes me think about the accessibility, not only in what you guys are providing and programs like yours, but also how our society is helping fund this. And if there’s awareness and information that our listeners could learn about to understand better, about funding, and how do we address the issue of those who do not have access or means to get this technology?
Tom D’Agostino
I think the great thing about being a statewide resource is that we’re very connected in this sphere. And so for Pennsylvanians, we just when in doubt, contact us, get in contact with us. We’re very responsive. We have a lot of professionals across a lot of different disciplines on the team that we could pretty securely direct someone into a specific lane for funding. Or we have our iCanConnect program that provides devices for people who are deaf-blind. We have a free special phone program that works with a variety of disabilities. If you can’t use a phone in a typical way, then you qualify, basically, if you’re low-income. And we have our fabrication program. And so we try to DIY or make 3D-printed devices. So we have certain ways in which we can get people the devices that they need if funding is an issue, and then we also understand a lot of the funding sources within the state, but then also we understand the private loan situation as well.
Kim Singleton
I want to go back to how people get stuff is really important, but if we lived in a community that was truly universally designed, people would have to get less. It would just be in the fabric of our community.
Bey
I totally agree. I live out in West Philly, and I’m sure this is throughout the entire city. I see people in mobile chairs in the street. In a conversation that I had with a friend of mine who skateboards, it became clear to me that the sidewalks in Philadelphia are…
Tom D’Agostino
Atrocious.
Bey
Thank you. I was looking for adjective. I like that one.
Kim Singleton
That’s a good one. Scary. Unsafe!
Tom D’Agostino
So my sister has cerebral policy, and when I was in college (I went to Temple as an undergrad), multiple times, one brother on one side, the other brother on the other side, making sure that she could walk on the sidewalk because the sidewalk is so uneven and she drags her feet. Right. That’s the way in which she walks. And if you’re dragging your feet and there’s, like a one inch gap between the two stones and the sidewalk, she’s going to fall.
Kim Singleton
And if you really think about that, yes, it would definitely help folks who use powered mobility. It would definitely help them. But it would also help mothers with strollers. It would also help skateboarders. It would also help people on bicycles. It’s just universal design. It just makes sense, right?
Angelica
Absolutely.
Bey
Can you talk about bringing ability or disability into the larger mainstream conversation? I feel like sometimes when it gets brought up, people tense up and there’s like a stigma around it or a discomfort. How can people start to work toward being very comfortable with talking about these things? And then the step beyond that, including it in our decision-making, our voting, our legislation, our cultural representation.
Kim Singleton
Right. A place at the table, right. I mean, we’re all talking about that. Whatever our affinity group is, whatever our identity is, we all need a place at the table. And that includes people with a variety of disabilities. You can’t have one person with a disability at the table and think that now you’ve covered it, you’ve checked off your disability block, right? Or checked off that box, because everybody’s experience is so different.
Tom D’Agostino
Having someone with a disability, right? They are their advocate, people are their own advocates, and people understand their lived experiences the best. The importance to have a variety of people with a variety of experiences. And not only that, but the expectation to listen is really important.
Angelica
That’s huge. Where do we need to go in the future? What do we need to invent? What is the next level of integration?
Bey
I’m ready.
Kim Singleton
I teach the Assistive Technology and Universal Design for Learning course at Temple University, and my students just had a quiz with the question of what needs to be invented that hasn’t been because it needs to be crowdsourced. I’m not going to sit here and tell you this is what we need. The people who are thinking for themselves about what they wish they could do can really give us insights about what it is. That’s the direction that we need to go.
Bey
Thank you for coming on So Curious! We really appreciate it so much.
Angelica
Hi, this is Angelica Pasquini from So Curious. You know what? We love making this show, okay? But sometimes there are great bits amd we just can’t fit them into the episode. So we put together a bunch of great bonus content and you can find that available at beyond fi.edu.
Angelica
Thanks so much to Tech Owl and to Mason Carter. This concludes the episode of So Curious, presented by The Franklin Institute. Thanks so much for listening. This podcast is part of The Franklin Institute. The Franklin Institute is a science Museum located in Philadelphia. The Franklin Institute’s mission is to inspire a passion for learning about science and technology. For more information on everything about The Franklin Institute, visit fi.edu. This podcast is produced by Radio Kismet. Radio Kismet is Philadelphia’s Premier podcast network for businesses looking to develop their own branded podcast content. Check them out at radiokismet.com. There’s a lot of people who make this podcast happen. Thanks to the producers, Joy Montefusco and Jayatri Das. Our managing producer Emily Charish, our operations head Christopher Plant, our associate Producer Liliana Green our audio team Christian Cedarland, Goldie Dangley, Lauren DeLuca and Brad Florent, our development Producer Opeola Bukola, our science writer Kira Vayette and our graphic designer Emma Seger. See you next week.
