Liz Persaud: Assistive Technology Professional
Transcript
Marsh Naidoo (00:12):
Hi guys. Welcome to the Raising Kellan Podcast. My name is Marsh Naidoo and I blog at raisingkellan.org where we curate resources for parents raising children with developmental delay and or disabilities. On today's episode, we chat with Liz Persaud. Liz is an assistive technology professional and comes to the table with her lived experience of using assistive technology. Just as a quick reminder, the information on this podcast is purely informational, and if you are seeking specific advice for your situation to contact a professional. So grab that cup of coffee and stay tuned for what is bound to be an awesome conversation. We are so, so pleased to have you join us today. Liz Persaud welcome to the Raising Kellan podcast.
Liz Persaud (01:14):
Oh, thank you so much. I'm honored to be here.
Marsh Naidoo (01:17):
Guys, just to give you a little bit of history, Liz is the program and outreach manager at Tools for Life. This is a program through the Center for Inclusive Design and Innovation at Georgia Institute of Technology. Liz, can you tell us a little bit about the Tools for Life Program please?
Liz Persaud (01:41):
Yes, I would be very happy to. So it's important to know the Tools for Life program is the Assistive Technology Act program in the state of Georgia. What's important to know is that every state in the country, as well as the territories, has an Assistive Technology Act Program. So we all have the same core activities. We're just known by different names across the country. We operate just a little differently, if you will. So for example, in Georgia, we're part of the university system, right at Georgia, at Georgia Tech, Georgia Institute of Technology. But in a nutshell, what we do is we serve Georgians of all ages, all disabilities. And I really mean that even though we're at a university setting it is not unfamiliar to us to have somebody in their eighties or nineties reach out. We do a lot with the aging population as well too.
(02:39):
And so again, what we do is we just help people with disabilities and the aging population try to be more independent by using different types of assistive technology. And for anyone out there that isn't familiar with assistive technology, it's basically any piece of equipment that can help somebody with a disability be more independent. And there's a range. So for example, I identify as somebody with a physical disability. I use my power wheelchair every single day to be independent. That is just one piece of assistive technology. My home is smart. I use my voice to turn on and off my lights. Marsh, when you and I were emailing, that's me using my voice. I use my voice for everything to dictate on my computer, to open the internet, to control the lights in my home to my favorite is turning on my electric blanket every night. <laugh> <laugh> I use it. My husband says I'm preheating the oven before I get in <laugh> I use my voice for controlling, again, just all aspects of my environment, my entertainment. So again, that's just one other point of assistive technology. So that's what we do in a nutshell. I specifically spearhead our education and training and even now more so than before, our virtual presence and making sure that it's online, it's accessible, and it's inclusive for anyone that needs it.
Marsh Naidoo (04:14):
Liz, you touched on something that's a really important point, that being when we think of disability, how would you frame disability?
Liz Persaud (04:24):
That's a great question. When I think of disability, the first thing I wanna say is that I think of it as a natural way that life progresses. So I don't automatically go to obstacles and barriers. I just think that for me, specifically my life, I'm born this way and I was given a gift to help educate. And we all operate different ways. I mean, I'm sure that you use many tools throughout your day to make your life easier. That could be similar to me. It could be a little bit different. So first and foremost, when I think of this ability, I think of it as just a natural way of the way that life progresses. We're all born the way we're born. We all bring unique circumstances to the table. I always say in all of my talks and everything that I talk to people about, that if we really thought about it, we would have more similarities than we do differences.
(05:24):
Right? Absolutely. Absolutely. So with all that being said, I do when I'm thinking deeper about the social construct of disability and what it looks like for the barriers and obstacles that happen to me in my life or anyone out there that has difficulty navigating the world, whether it's through a physical disability or cognitive or sensory or what have you, absolutely. It is designed by society. I was just giving a talk yesterday about the medical model versus the social model of disability. And so when we talk about the medical model, it's very much focused on diagnosis, it's focused on fixing impairments, it's focused on even putting people in institutions. And when we look at the social model that is more designed to say exactly what I was saying, that disability is natural, that it's societies doing. I don't think about my disability. I was born with spinal muscular atrophy which is a form of muscular dystrophy.
(06:31):
I was diagnosed at nine months old. This is my life. My parents raised me to just be Liz, just to do the things that I need to do every day. And yes, I don't go up the stairs, I go around the corner, up the ramp, but that's just the way I navigate through life. But when I think about my disability is when maybe my husband and I are trying to have a nice date and we go out to a restaurant and we get there and they say, We're not accessible, or you have to enter through the back entrance. Or even when I'm in meetings and somebody hands me a stack of papers that's not accessible for me, I'll drop them on the floor cuz I can't physically hold them for a very long time. But if you email me my meeting notes and my agenda and everything I need, then it's already set for me. And so those are the times when I'm up against those barriers where society or even attitudinal barriers, it's all about education and just sharing the word of how we all have more similarities. So that's when I think about disability and just the idea of what that really means for all of us.
Marsh Naidoo (07:40):
In your professional capacity, Liz, working as an assistive technology professional, looking at your work through the lens of an individual that has a spinal muscular atrophy, <affirmative>, tell me how that comes into play.
Liz Persaud (07:55):
Oh, it is instrumental. I'm very honest with people that I have a disability. I'm very open about sharing my personal perspective and how that has shaped my professional perspective because it all goes hand in hand. I mean, just now I was describing some of the assistive technology that I use. I often say when I'm doing presentations and talks that I use upwards of 27 to 32 types of assistive technology every day. And I think by me sharing my life, my giving a glimpse into the window of what my world looks like, it is helping professionals open their eyes, open their horizons. Even some of the newer even younger adults that are coming into the field that maybe aren't so familiar with it, or maybe they don't have a son with a disability or a best friend or a partner or a neighbor or what have you.
(08:59):
But I feel like it's my job and other people like me to if you want to, you have to educate and to help people understand that they can have a diversified life. Get to know your neighbor with a disability, get to know the kiddo down the road with a disability. If you see somebody in the break room at your office sitting by themselves, just go talk to them. I mean, we should all be doing that anyway, no matter what disability you're not. And so again, I do often, and don't get me wrong, it does get tiring. I often wanna just be Liz and not focus on my disability. I remember when I got married seven years ago, that was a big thing. I just wanted to be a beautiful bride and I wanted to focus on my wedding. But what came from it, and I don't mind this looking back on it and just really having this perspective as so many people reached out to me and they said, You don't realize how important this is for all of us.
(10:02):
You know, being able to roll down the aisle with your husband to share all of that. And while I wanted just to be Liz, I understand what that means for everyone. I'm happy to have that conversation because it changes people's thoughts, it changes their perspective. One of the best compliments I thought was from a team member of mine, she's a few years younger, and she said to me, she was like, You make it cool, you normalize it. And it was just a fun conversation. She was like, I would've never thought about holding up a cup and helping somebody drink their drink at lunch. But you just kind of throw it out there. You're like, Hey, I'm thirsty. Can you help me? And just make it easy. And again, that is just probably a natural way that I go about educating the world as well too.
Marsh Naidoo (10:53):
What were the early years like Liz, for you growing up? I'm just curious about that.
Liz Persaud (11:00):
Yeah, my parents so again, I'm Guyanese American. My parents are from Guyana in South America. My bloodline goes back to India. My parents in the late sixties, early seventies, chose to move to America to New York City. My dad was an educator, a trainer at heart, kind of a man of all trades, if you will. And so he came to America to really pursue that American dream that you often hear about. And I was born in New York City and it was the first time my parents ever really dealt with disability. And even now we have conversations of what would my life look like if they didn't choose to move to America. I don't think I'd have technology. I don't know if I would really go to a school and be fully integrated in society. I don't know if I'd meet, I mean, I don't know the answer, but I just know the differences in culture.
(12:06):
Even now we're in 2021 there's still some far distant relatives that won't really talk to me so much or they just don't understand. And so in the early years, my parents fought for so much and they had to learn a lot too. So being brand new, I mean, I can only imagine brand new coming to a new country, just trying to understand the culture, New York City of all cities and where it's just a melting pot of everything. And then having, I mean I've got two older brothers and younger sisters, so two older brothers my brother Andrew, who is right after me or I'm younger than him, just a year and a half. So we almost grew up like twins. So my mom, dad was working full time trying to get the money coming in and my mom was just taking care of us. And so I wouldn't say it was the easiest thing in the world, but I'm so grateful that they just had big mouths and smart brains and that they advocated.
(13:16):
I remember a story they told me of when I was little, probably three or four years old. It was advised that they put me in an institution and they didn't know any better and they did. And it was one day and my dad said that my behavior was so different and he knew that wasn't for me. And so they pulled me out. And ever since then I've been mainstream classes, mainstream everything. The only help I need is physical assistance throughout the day, but everything else, I'm good to go. So I'm very, very grateful that they just stopped me for me. They knew that I rolled around, they knew that I might be a little floppy, if you will, but my mouth works and my brain works. And that's probably some of the best advice. My dad passed away this September 5th, it'll be one year. And he was my best friend, one of obviously my father, just the closest person in my life.
(14:16):
But I'll never forget, I mean, he always and we're both stubborn. Oh, stubborn, stubborn. But he would always say to me, Your legs may not work but your brain and your mouth does. And even when it comes to a point where your mouth doesn't how to communicate. And I'll never forget that. It's so simple. And he was probably just so tough when he was telling me it too many years ago, but he's absolutely right. My legs don't work, but I've got a brain, I've got a mouth and I've got ways I can communicate to tell the world and tell people all the good things about me and my life and everything. So just very grateful that my parents had hope. Right? Hope is a big catalyst for so many of us. And that when doctors said I often tell a story about a neurologist that saw me when I was maybe two years old.
(15:12):
And he told my parents I failed every test that they were gonna have to keep me at home forever. I wouldn't be able to go to school, I wouldn't be able to have a family mean scary, scary things. And they just said, That's not good enough for us. And so they went to a different neurologist in a different one and a different one. And we finally met a neurologist that said, She's so smart and she loves to talk and she'll be able to go to school when I was two years old. And that's a big deal. Hold, am I now 42? I mean, that's a big deal to say that around somebody who's just a baby. But he gave my parents hope. And for me what I know happened is it changed them. And then they were able to give that hope to me and even my siblings. And so we just moved through life the way we knew how to move through life. And I'm just very, very grateful that they saw all that positivity there. You there,
Marsh Naidoo (16:11):
Liz? You know what, if there's anything in our mission that I sincerely would like to bring light to is that as medical professionals or health professionals, it is so vitally important how you encourage that parent in those early years because you are right. Those expectations of the parents is exactly what's going to lead to their child's success in navigating their life. And that honestly is the whole mission of Raising Kellan. And it's like guys, absolutely not. It is difficult. And they are many workarounds. However you set your expectation and you work towards it. Exactly. Liz, as far as your home now, I'm curious about that. Tell me about the smart technology girl or the smart home. What do you have going on there?
Liz Persaud (17:10):
Okay, so I'm very happy to say that my husband and I just moved into this house two months ago. We've been together almost 20 years. He's he's medically retired from the Air Force. So he served our country. We were actually long-distance for eight years when he was all over the world in all over this country. But he was in Korea for a year. So we spent a lot of time communicating as well too. So very lucky to be in this beautiful, accessible home. It's fully accessible for us. My husband Ben is probably one of the smartest people you would ever meet in your entire life. Sometimes I'm like, I can't even believe he's with me. He's so intelligent and so smart. But he loves technology and he actually we used to work together at Georgia Tech on the same team and he separated to start his own business that focuses on smart home technology, specifically for people with disabilities.
(18:11):
He'll talk to anybody about it and help anybody. But the goal is to work specifically with people with disabilities to help make their environment smart. Even if it's one little lamp that you can either touch or you can they turn on the lamp or even if you don't have the ability to even form a sentence, maybe a sound or something. Right. So he's very interested in helping people with that. So for me, in our home again, like I said earlier, I use my voice for everything. But the nature of my disability, the more I love talking, don't get me wrong, but I get winded and I get tired. So I have to be smart about my energy throughout the day and making sure that I'm not talking for so long and running to the next thing and talking again. But maybe throughout the day I use a switch or something different.
(19:05):
So in our house, all of the lights are set up on the smart system and we do this through Google Home and also through using Alexa. And there's way more details that my husband knows about the intricacies of it. But he'll often just say, What is it that you want to do? And my answer, I know I drag him crazy cuz I say I wanna do everything. And he's like, Okay, well give me some time. So right now the lights are set up. I'm able to turn on the tv I can slip through any channel on cable, but I can also use my voice and switch to Netflix Lakes or Hulu and just pull up a show if I wanna watch a show. Music, obviously all of that is very much controlled by my voice as well too. We actually just bought a brand new washer and dryer and that is smart as well.
(20:00):
So let's say I have a caregiver and my husband that would maybe load the laundry, but we didn't wanna start it until later. I could start it later if I wanted to through an app or by using my voice as well and so one of the next big things that we're gonna work on is the doors. So I can open the lock and unlock the door with my voice. So if you came over to visit me, Marsh and I was home alone, all I have to do is use my voice and say, unlock the door. And then it opens up and then you can open the door. And so the next thing we're working on is just an automatic door opener. So that way I can freely go in and out of the house on my own. We have a beautiful yard here and I love the warm weather and I love being outside and I would love we're getting close. I just want the opportunity to be able to go on my own. And that's one less thing I have to ask somebody for. My independence is up there. So not that I don't mind asking and not that I have lovely people in my life and a wonderful husband who's a great caregiver. But independence is important for everyone.
Marsh Naidoo (21:12):
Yes.
Liz Persaud (21:13):
Yeah.
Marsh Naidoo (21:15):
Well, tell me about teleporting. I've heard about it, but can you tell me more about teleporting and what that is exactly?
Liz Persaud (21:25):
Okay. I think you may be referring to telepresence.
Marsh Naidoo (21:28):
Telepresence. Yes.
Liz Persaud (21:30):
Telepresence. Yeah. Teleporting is very different. That's what they do in Star Trek.
Marsh Naidoo (21:34):
Okay. I know we don't wanna teleport anyone did
Liz Persaud (21:37):
<laugh>, but one day I hope one day we'll be able to teleport. I would love that. I'd come visit you in a heartbeat. Marsh.
Marsh Naidoo (21:46):
Come on girl. <laugh>.
Liz Persaud (21:48):
I would love that. So telepresence is a very, very cool technology. They are telepresence robots, if you will. And if you do a Google search there's quite a few out there on the market now. But basically it's a device that you can control from a remote location. So for example back in 2013, 2014, I was in the hospital with pneumonia. It happens with my medical diagnosis. And when I got out, I was at home. When you come over in the hospital, you're still recovering. And I was ready to get back to work and just slowly starting back at work, but not really in the position to go into the office every day and to be around people every day. And so at that time, I'm very lucky that we have such a wonderful assistive technology program and a great team. And we often are looking for the latest and greatest pieces of technology that we can bring to Georgia Tech to have in our lab.
(22:53):
So when people do visit us, they can see all these things in person. And so at that time we acquired a telepresence robot. And I remember that day I connected to it and I was at home sitting in bed and the robot was at the office and you can see my face on the screen, you can hear me. And I was controlling it from my home. And I was rolling around the office, I sat at my desk and I went and I talked to everybody in the office. I hadn't seen anyone in a couple weeks cause I had been sick. And so everybody was hugging me, they were hugging the robot, but they were hugging me. And that day I did a three-hour training via the robot. So again, I'm sitting in bed, but I'm on the robot. Just the screen looks like this right now.
(23:47):
I mean, you see my face and I'm moving around. And it was so, it's such incredible technology. I remember giving speeches and saying, I cannot wait for the day that I can relax my body and maybe be at home, but have some type of technology that connects me to the world or connects me to my job. And so here we are and it's there. Yeah, it's pretty incredible technology. There's stories and research done. There's a lot of kiddos that use it in school that have compromised immune systems. There was a story of a little boy out west that had a double lung transplant and that was able to use that telepresence robot to go to school. And there's so many adorable pictures of kiddo dressing up the robots with wigs and outfits and all of those fun things just to make it fun. But incredible technology, incredible technology to keep that interactiveness at the forefront and making everyone feel included
Marsh Naidoo (24:50):
In terms of speech. We often hear of augmentative and alternative communication devices, that kids can use to communicate. And if you have a vision impairment, we know of screen readers. Are there any technologies out there that you might wanna make us way off or anything up and coming?
Liz Persaud (25:12):
Oh, you're absolutely right. So you're right AAC, right? So there's a vast variety of different ways that people can communicate from very simple communication boards to using devices that are solely dedicated to communication or even apps on your phone. It's getting so easy now to communicate that way. We have folks that we interact with that are deaf part of hearing or have other hearing-related disabilities. You can download apps now that if they're signing to you find language, you can see the interpretation of that on the app as well. So there's a lot out there when it comes to just the mobile devices and apps out there, and I encourage people to check that out. Absolutely. The smart home technology, like we talked about, that is a game changer for so many people with disabilities. And it isn't necessarily about just opening your blinds or turning on and off flights.
(26:17):
It could just be a matter of making sure that you have an emergency system set up that you can call for help or maybe you wanna turn on a lamp that's red and that red lamp is maybe in your caregiver's room. So when they see that, they know it's an emergency. So there's a lot that you can do with some of those smart home technologies as well. Well there's so much out there for reading and writing. Smart pens are huge now in the community, especially with education. And so with Smart Pen, you can scan written words you can highlight them, the pen will give you a definition of what that is. And so that can really help with comprehension and just understanding as well too. I talked about using your voice. I mean, there's so many pieces of software available out there. Word prediction is something else that I use, but that's also available on my smartphone that's not probably on your smartphone now too.
(27:22):
And basically it learns your style of writing. And so I noticed the other day I was dictating on Microsoft in my email and it was bringing up the next word. So that I think that's a new feature within Microsoft. But I love that because that's less energy, less for me if I'm typing or using an onscreen keyboard. So I mean, I can go on for days and days and days about the technology that's out there. I encourage people to reach out to their assistive technology program. And no matter what state or territory you're in I encourage people to do some Google searches on assistive technology of what's available out there. Obviously, people can reach out to me and I'd be happy to continue the conversation but it's important to know that there's low-tech, middle-tech and high-tech assistive technology. You don't fall into one category, you can fall into all of them. When I mentioned earlier that I use 27 to 32 pieces of assistive technology that includes my reacher, right? It's a lightweight, aluminum handled reacher that if I see something on the table, I can just use that reacher and pull it closer to me. That's very, very low. But then again, I mentioned they use my voice that's more high-tech as well. So it's truly any piece of equipment that can help somebody with a disability be more independent. There's a lot out there.
Marsh Naidoo (28:57):
Wow, Liz. Yeah. Liz, thank you so much for your time. Oh, of course. Any last words that you would like to end off with Liz for our listeners or?
Liz Persaud (29:11):
Sure. Well, again, Marsh, thank you so much for thinking of me for this opportunity and just wanting to engage in this conversation. I think that storytelling is incredibly powerful and I appreciate you giving me a platform just to share more about my life and how I can continue moving forward, but also educating people as well to you because that is so important. I think the biggest note that I can leave on is just letting people know that disability is a natural part of the human experience and that we all will acquire a disability at some point in our life and to not have fear or ignorance or any of that lead you as you are encountering different people in the world. Try to lead with love and compassion. And my mom has always said in my eyes, I am who you say I am. And so that means if you look at me and you say, Gosh, she's suffering, she's a victim, then that's your reality. But if you look at me and you say, she's flourishing and she's raising awareness and she's trying to just live her life, we're all just trying to do the best we can every day, then I think that really helps to change those attitudinal barriers. And that's some of the stuff that I absolutely love talking to people about and just some of the biggest legacies I hope I can leave when my time is gone as well too.
Marsh Naidoo (30:41):
Are you planning to write a book or a short story or what's in the future for Liz? What are you thinking about?
Liz Persaud (30:49):
Oh, thank you for asking me that. I have thought about writing a book for many, many years. My husband, Ben and I have thought about writing a book together cuz people are very curious about our inter-enabled relationship and what that looks like for him as my caregiver. But even just the love and the intimacy and what that really means in our relationship. So yes, I've thought about writing a book I, I've thought about hosting a podcast and just having folks on and just talking about these topics every day. And even people that have never encountered disability. I would love to have a conversation. I can't tell you how many times I've had people come up to me and said, Before meeting you, I thought all people with disabilities were angry.
(31:39):
I know, right? So I would love to just figure out ways that I can continue storytelling because I really absolutely love that and I love just talking to people about life and even technology in the marriage of disability and technology and what that looks like. So there's lots of wheels turning in my head about what that could look like. Ben and I have talked about maybe finding an investor that could help us make the house even more smart and maybe doing a podcast around all of that and showing the accessibility and showing all that. So I'm putting all the good energy out there in the world that if folks hear me and they wanna help out or wanna help me just see some of those next avenues in life I would absolutely love that. But those are some of the things I've been thinking of, and I think retirement from my work is in the near future. So I'm excited to focus on some of those other things as well. I'd love to stay in touch. Marsh, please let me know if I can do anything for you or for Kelly, and I would love to just continue the conversation. So yeah, I'll definitely be thinking of you and we'll definitely stay in touch.
Marsh Naidoo (32:52):
All right, my dear. Bye for.
Liz Persaud (32:54):
All right, you take care. Thank you so much,
Marsh Naidoo (32:57):
Byebye, Liz.
Liz Persaud (32:58):
Bye Byebye.
Marsh Naidoo (33:02):
Thank you for listening to today's episode. And as always, remember, if you would like to reach out to us, you can contact us at raisingkillengmail.com. We would sincerely appreciate a rate and review on your podcast player. And guys, as always, be safe. Take care. And until we see you all the next time, remember to get to the top of your mountain. This is Marsh Naidoo signing off.