As part of the Utah Public Radio ongoing series "Project Resilience," Shoshannah Buxbaum takes a look at intersections of aging, disability and technology during the COVID-19 pandemic.
Full Transcript:
Twinkly ambient music fades in
Jordan Snell: I'm kind of an oxymoron.
Nita Budo: I am 80 years old. So this is all new to me.
Preston Parrish: And I go, “you do what?”
Kelly Holt: I do Facetime and Zoom. But, I miss the hugs and kisses.
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Shoshannah Buxbaum: I’m Shoshannah Buxbaum. This is Project Resilience. Over the next half hour we’ll be listening to people with disabilities and seniors across the state. Listening to stories of how technology has shaped their lives during the pandemic. From getting hooked up to the internet for the first time. To the hurdles and expanded opportunities of remote work. We’ll be focusing on technology as a connector. And its renewed importance during a time when in-person communication is more limited than ever.
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Shoshannah Buxbaum: During the confusion and isolation of the early days of the pandemic. One man actually started to imagine a new life that he never thought was possible.
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Preston Parrish: I was laying in my bed and I woke up. And once I opened my eyes and I started to blink. Because you know when you're blinking and there's no light coming through.
Shoshannah Buxbaum: Preston Parrish lost his vision suddenly in 2005. And while his vision had been a little hazy for about a year. This was a shock.
Preston Parrish: It was first, disconcerting, where you know, your whole world comes crashing down, and you don't know what you're gonna do. You're just like, totally freaking out.
Shoshannah Buxbaum: He lost his vision because of diabetes. His doctors thought they might be able to restore his vision. He had several procedures. And a surgery to reattach his retinas. But, it didn’t work. He was also undergoing dialysis at the time. And his world became very small.
Preston Parrish: It was like I was in a bubble.
Shoshannah Buxbaum: Preston went to dialysis three times a week. He made friends with the guy who sat next to him. And that friend kept trying to convince him to get services. And start adjusting to his new life. But Preston wasn’t ready.
Preston Parrish: I shined him on and told him, “No, I don't want to do it.” Because I was, I was feeling self pity.
Shoshannah Buxbaum: It took him 15 years. But finally, a few months before the pandemic Preston reached out for services. A technician from the state’s division of Services for the Blind and Visually Impaired came to his house. He helped Preston set up a screen reader for his computer. It’s called JAWS.
Preston Parrish: JAWS will tell you exactly what you're doing. So you really don't need your eyes. All you need are your fingers.
Shoshannah Buxbaum: The tech also told Preston about all of the programs the center offered. Classes on things like braille, navigating with a cane, woodworking, how to do household chores.
Preston Parrish: And I couldn't believe all of the stuff that was going on and how fluent and efficient he was. He was, he was just as blind as I was.
Shoshannah Buxbaum: In fact, all of the techs from the division are blind.
Everette Bacon: It's so critical for blind individuals to be teaching other blind individuals. When you actually have blind instructors, like myself and others, going out, then, you know, it becomes more real.
Shoshannah Buxbaum: That’s Everette Bacon. He manages the team of specialists who go into blind people’s homes across the state. And it’s not just about helping people to set up their tech. It's about showing newly blind people what’s possible. Everett’s been completely blind for about 10 years now.
Everett Bacon: I cook, I grill, I manage the house, pay bills, do all the things that, that anybody else does with sight. But, I just do it a little different way.
Shoshannah Buxbaum: Once the pandemic started the center was closed. And service techs weren’t going into people’s homes. They still had one on one virtual sessions. But, they also started hosting daily Zoom meetings.
Preston Parrish: It was like every day I would look forward to it. I would just go down and find a nice, comfortable place and then wait until one o'clock before the Zoom classes started.
Shoshannah Buxbaum: They talked about tech troubleshooting, sure. But for Preston, it was about a lot more than that.
Preston Parrish: I'm asking questions that I thought I couldn't be. I would never ask anyone like, “have you ever been out of the country?” Of course, I've been out of the country. I've been to Germany and Mexico! And my jaw’s, like, dropping — “You’re blind and you went out of the country!”
Shoshannah Buxbaum: But the fact that Preston couldn’t actually go do any of these new things right away? Well, that didn’t get him down.
Preston Parrish: So, you know how people are saying that, they don't know what they're going to do, having to stay inside and, and for so long without doing anything. Yeah, I've already adjusted to that.
Shoshannah Buxbaum: And now, he’s making his home work for him. Preston’s in the process of transforming his house into a smart home. It’s little things that make a big difference.
Preston Parrish: I used to leave my TV on because whatever, whatever, program was on I would know what time it was. Now, all I have to do is just know hey, Google, what time is it?
Shoshannah Buxbaum: And it was connecting with other blind people, even remotely, that made him understand what’s possible.
Preston Parrish: If you have communication with other blind people, then, you know, one, one person with information, can, can open the eyes of many.
Shoshannah Buxbaum: Bacon says that for newly blind people, acceptancing that their lives will be different— is the hardest part.
Everette Bacon: As much as technology is a wonderful thing. Until you kind of come to that emotional understanding and acceptance. All that technology is just wasted.
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Shoshannah Buxbaum: That was Everette Bacon from Salt Lake City and Preston Parrish from Layton.
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Shoshannah Buxbaum: Kelly Holt is a speaker with the Advocates as Leaders Speakers Network. Before the pandemic she traveled across the state of Utah to educate others about the experiences of people with disabilities. Now, she’s adapted to presenting remotely.
Kelly Holt: I was born with a trauma, traumatic brain injury.
Doing the presentation online, it's harder for me and I don't feel as connected to the audience. And I don't think my message comes across as well or as calmly and it is harder for people to understand me.
I miss traveling and seeing people. I feel lonely and I do FaceTime and zoom with, with family and friends. But I miss the hugs and kisses.
If I didn't have technology, I know my life will be very boring.
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Shoshannah Buxbaum: That was Kelly Holt from Price, a speaker with the Advocates as Leaders Speakers Network.
Shoshannah Buxbaum: For some people with disabilities, that transition to remote work may even open up new employment opportunities that weren’t accessible before. But that rapid shift to a virtual office has also created some new challenges.
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Shoshannah Buxbaum: Hello. This seems to be a lot better with headphones actually so, um, yea. Captions are populating okay? You can, like, understanding everything?
Katie Lynn Adams-Anderton: Yeah, I just like, just takes me a minute to like, If I don't have captions, man. It takes me a while. And I have to, like, read lips. And it's a whole thing.
Shoshannah Buxbaum: Yeah. Yeah. No, and I feel so stupid. Because we've literally had this whole conversation about how like, Zoom doesn't have built-in captions. And then I was like, oh, here, like, let's do a Zoom.
Katie Lynn Adams-Anderton: It's okay. It happens all the time.
Shoshannah Buxbaum: So, I’m using Google Meet for my interview with Katie Lynn Adams-Anderton. It’s got built in captions. That’s key for Katie Lynn because she has auditory processing disorder and also has hearing loss. Now that virtual meetings are the norm — Zoom has become ubiquitous.
Katie Lynn Adams-Anderton: So the biggest challenge is like Zoom does not offer captions readily available. Most of the time organizations have to either pay, or the worst of all things, you have to have someone there typing for you.
Shoshannah Buxbaum: And by typing for you she doesn't mean professional closed captioning. She means a generous coworker furiously trying to type what everyone’s saying in real time. Since we spoke, Zoom has rolled out live captioning for some types of accounts. And, there are also free professional captioning services that you can add on to Zoom. But the problem is that most people don’t even think about it.
Katie Lynn Adams-Anderton: I think it's genuinely like, just a forgetfulness of just like, how wide spectrum people need captions. Because like, I'm not deaf. And so I think a lot of times people think, because I can mildly hear, I should be able to, like, understand, mostly. And it's like, no, that's, that's not how this works.
Shoshannah Buxbaum: In elementary school Katie Lynn had severe ear infections. She had several surgeries and got tubes put in her ears. She didn’t hear at all from first through third grade.
Katie Lynn Adams-Anderton: Because I didn't hear through those very important times. I don't hear correctly.
Shoshannah Buxbaum: She had surgery to graft a new eardrum to repair the damage from the infections. And she did eventually regain some of her hearing. But she continues to experience the symptoms of auditory processing disorder.
Katie Lynn Adams-Anderton: When people are talking at times, if I can't comprehend what they're saying. It basically sounds like the peanuts parents, the muffled-ness. And I have no idea what’s going on.
Shoshannah Buxbaum: Katie Lynn has been hesitant to disclose her disability, and ask for accomodations, especially at work.
Katie Lynn Adams-Anderton: Sometimes people will think, sometimes, less of me, because I'm having to have these conversations. It becomes like this, like, weight of like, Is it worth it? Is it worth it to say something and say, I need captions?
Shoshannah Buxbaum: Sachin Pavithran is Executive Director of the United States Access Board. He says that it’s common for people with disabilities to face workplace discrmination.
Sachin Pavithran: There's this ideology that people with disabilities are not as productive.
Shoshannah Buxbaum: But, it’s the stigma around asking for tech accommodations that’s actually making Katie Lynn less productive. Since she is constantly looking for time-consuming work-arounds. She’s the vice president for compliance for a background screening company. She recently went to a virtual work conference. And there weren’t any captions.
Katie Lynn Adams-Anderton: So, I rewatched the conference two to three times per session, just so that I could capture it all.
Shoshannah Buxbaum: If she were in-person she could have asked the person next to her if she didn't catch something. Or she would have gone up to the presenter afterwards. That’s a lot harder on Zoom when everyone disappears the instant the meeting is over.
Shoshannah Buxbaum: And while, remote work has created new challenges for Katie Lynn. For many people with disabilities remote work might actually expand employment opportunities. Here’s Sachin Pavithran from the United States Access Board.
Sachin Pavithran: These are platforms, you know, people with disabilities have been advocating for, for a long time. Now, suddenly when everyone else kind of got forced to use this platform, all of sudden it's like, “Wow! This is amazing. We should do this!”
Shoshannah Buxbaum: Sachin is blind. And he’s thrilled that remote meetings are now the norm. He acknowledges that his job is more accommodating than most. But, going to in-person meetings was a logistical challenge. A combination of taking publicly funded shuttles that ran infrequently. And shelling out for an uber to his final location.
Sachin Pavithran: I've got to meetings, and I'm standing in the hallway for like, a half an hour, 45 minutes, because there's really not a place for me to sit and wait. It's hard to explore when you're blind person, when you're by yourself.
Shoshannah Buxbaum: Transportation remains one of the biggest barriers to employment, says Sachin. In Utah, Just under 50% of people with disabilities have jobs at all. That’s according to census data from 2018. And now that employers have been forced to adapt to remote work. There may be a lasting impact.
Sachin Pavithran: I think because the mindset is shifting, there's going to be more opportunities for people with disabilities to apply for jobs that they might have not considered to apply for.
Shoshannah Buxbaum: It’s still too early to know if there will be a permanent change. But, Katie Lynn hopes that this moment might provide an opening for people with disabilities to be part of the conversation.
Katie Lynn Adams-Anderton: I feel like at times, these decisions are being made by people who don't understand what, like, the other side of the coin is like. And so I just think it's important to get members of this specific community who might be affected, and just be able to help them in a way that's beneficial, so everyone has equal opportunity.
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Shoshannah Buxbaum: Despite there being a multitude of ways to connect virtually. Technology still can’t quite replicate that energy of being together physically. Especially when it comes to faith. Here’s
Amber Orvin.
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Amber Orvin: My disability is that I'm born with Ectrodactyly-ectodermal dysplasia, bilateral cleft chin, cleft lip, and palate. Or for short name of it is EEC.
I'm born and raised in the LDS Church. I’m the Primary secretary and midsingles ward representative in my ward. I haven't done any of the, my church callings because of COVID-19.
Before it closed down, I was a volunteer as a cashier in my temple serving others. It was the highlight of my whole week.
Not being able to be together as ward members, and hug, and hug each other or see each other, face to face is hard.
That was my happy place. And it still is even if I can't go right now.
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Shoshannah Buxbaum: That was Amber Orvin from Hurricane Utah. She’s also a speaker with the Advocates as Speakers Network.
Shoshannah Buxbaum: Missing that in person connection has been in many ways the most challenging part of the pandemic. And for agencies that provide services to people with disabilities. They’ve been working hard to get people connected virtually. One organization even helped connect some people to the internet for the very first time.
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Nita Budo: I am 80 years old. So this is all new to me.
Shoshannah Buxbaum: Before the pandemic, did you ever think that you'd be on Zoom and doing all this stuff?
Nita Budo: Never, never. I never thought this would ever happen.
Shoshannah Buxbaum: Nita Budo lives in Price Utah. She attends virtual programs run by Active Reentry. An organization that provides services for people with disabilities living independently in the Eastern part of the state. It’s mostly rural areas. Chris Haycock is Active Reentry’s Community Integration and Youth Coordinator.
Chris Haycock: I never once thought that we would be using Zoom to provide services at all.
Shoshannah Buxbaum: But within two weeks after some counties issued stay at home orders in mid-March. Chris had a slate of virtual programs up and running. Support groups for kids and adults. Cooking classes. Virtual visits to museums, zoos, and even to the U.S. Capitol. But there was one issue. Many of their clients couldn’t even get online.
Chris Haycock: Our big focus was to find those consumers that didn't have anything right then and there.
Shoshannah Buxbaum: Active Reentry purchased 24 tablets to give to their clients. And they’ve connected about a half dozen to the internet so far. The money came from the CARES Act. The next step? Training folks on how to use their new tech. Here’s Nita again.
Nita Budo: We had a program, to where we were on the tablet, and they showed us how to go through everything too. But you know what, when your mind can't hold all this information, you've got to do it more than once.
Shoshannah Buxbaum: And Chris and his team were there to guide her through the process.
Nita Budo: And I think this is probably why I enjoyed the tablet. Because if somebody didn't have patience with you, then you would not want to participate.
Shoshannah Buxbaum: Chris was even there to help Nita get connected for our interview via Zoom.
Chris Haycock: The box will come up and if you hit the blue one, it will say yes. So, do you want to practice that really quick?
Nita Budo: I do.
Chris Haycock: Okay, so I’ll just go ahead and mute you. Now.
Shoshannah Buxbaum: And It’s important for people with disabilities to remain connected to their peers, says Chris. Nita’s a widow and she lives alone.
Nita Budo: If you're not connected to other people than I says, you can go into depression or, or feel loneliness and such like that. So I says, this is, this is a good program to be on.
Shoshannah Buxbaum: Arven Hansen also just got on the internet for the very first time. He was born with a cognitive disability. And has been going to Active Reentry programs for the past twenty years. But they’re not quite the same virtually.
Arven Hansen: This is better than nothing. Better than nothing. I'm kind of a social person. That's what's been hard on the whole thing is that you can't interact with people like you should. I'm probably not the only one. Probably not. Mainly, before all this happened, we used to get together and that's the main part of the program. You meet friends for life.
Shoshannah Buxbaum: Arven and Chris first met 12 years ago. When Chris first started working for Active Reentry.
Arven Hansen: In the very beginning I started calling him Christopher Columbus, as a nickname.
Shoshannah Buxbaum: Why do you, why is that his nickname?
Arven Hansen: I dunno. It just came to me.
Shoshannah Buxbaum: And it just stuck. Chris and Arven have become close over the years. And it’s like that for most of Chris’ other clients too.
Chris Haycock: We're their support system. And a lot of them, you know, we, they, they probably view us as family, you know, they feel comfortable. We've had that connection with them for years.
Shoshannah Buxbaum: Arven’s not sure if he’ll keep using the internet after the pandemic is over. As for Nita. She’s hooked. She loves the cooking classes that Active Reentry offers. And that got her looking online to look for some new recipes.
Nita Budo: I started into this plant-based foods. I was looking at soups and I was looking how to make rice. I says, it was a lot of fun to thumb through it.
Shoshannah Buxbaum: And she’s even thinking about buying a smartphone to do video calls with her children and grandchildren. And if she does, Chris will be there to help her set it up.
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Shoshannah Buxbaum: Technology doesn’t have to mean something fancy or new. Or even high tech. Jordan Snell is interested in machines that we often take for granted. Until they’re not working that is. He’s studying technology and engineering education at Utah State University. He also has a side business.
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Jordan Snell: So I fix lawn mowers, leaf blowers, weed eaters, snow blowers this time of year.
I'm kind of an oxymoron. I have cerebral palsy. I have terrible dexterity. But I love nothing more than working with my hands and figuring out how things work and why they're not working.
So, but because of the pandemic, I only did a few jobs in the summer for established clients. It was quite the financial hit over the summer.
So, my wife also has cerebral palsy, she's actually a quadriplegic which means she's in a power wheelchair.
And that’s the other reason I've had to be careful is because of her quadriplegia. She's at a much higher risk for complications if she did get COVID-19.
Back when I was single and it was just me I'd probably say whatever if I get it I get it, but if she gets it It wouldn't be good.
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Shoshannah Buxbaum: That was Jordan Snell from Logan.
Shoshannah Buxbaum: Back in late March. A group of women in their 70s decided to take their knitting group online. It was a seamless transition. Well, mostly.
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Cheryl Hart: I totally lost your invitation. It's like, ah! *laughter*
Catherine Sharpsteen: Well, so here's, here's a little secret, Cheryl. This is what Zoom calls a recurring
meeting, the number never changes.
Cheryl Hart: Now I can see everybody. There’s Marianna! Hi Marianna!
Marianna: Hi!
Catherine Sharpsteen: Oh you know what, this is probably *Zoom bell* everyone who’s coming, good.
Shoshannah Buxbaum: This is Catherine Sharpsteen.
Shoshannah Buxbaum: How did you become the Zoom organizer?
Catherine Sharpsteen: The hostess with the mostess?
Shoshannah Buxbaum: Her writing group had moved online. And she realized that Zoom was really easy to use. It also helped that she decided to invest in a premium Zoom account. With no limit on the length of meetings.
Catherine Sharpsteen: And then I just sent out an email and I said, Hey, I'm hosting this week, and I'm not going to clean my house. But you know, come anyway. *laughter*
Cheryl Hart: It's not quite the same. But you know, the difference between canned music and live music, if you are in the room with the music, it enters your body in a different way.
Shoshannah Buxbaum: This is Cheryl Hart. A retired singer and one of the group’s longtime members. A small but significant difference about meeting virtually?
Cheryl Hart: We have to bring our own snacks. And eat them here and we don’t get to share. *laughs* Because everybody is a really good cook and people bring really honest, good true snacks, not just junk.
Shoshannah Buxbaum: Karen Hamilton was the one who originally started the group about eight years ago, after she retired from teaching.
Karen Hamilton: I've always wanted to know how to knit and I said, that is one of my goals when I retire. I want to learn how to knit. And I thought the best way to do it is start a knitting group, and then they could teach me.
Shoshannah Buxbaum: Do you view yourself as like the organizer here, the glue?
Karen Hamilton: Not at all. No, no. What I do is like I'm one of those instigators. I get things started, man, I pull back and just let it go.
Shoshannah Buxbaum: And she really did just let it go. You don’t even have to know how to knit to be part of the group. All handcrafts are welcome, crocheting, embroidery. And when Catherine Sharpsteen first joined the group she wasn’t crafting per se. She was using the time with the group to sort her husband’s baseball card collection.
Catherine Sharpsteen: He had gone into the nursing home, and that those cards had to go somewhere.
Shoshannah Buxbaum: Her husband had dementia. And the group helped her through it as she watched him slip away. And then they supported her when he died about two years ago.
Catherine Sharpsteen: For me talking is, really, really, makes a big difference. If something upsetting has happened to me. I want to talk about it. I think all of us at one time or another have sort of told our life story to the group. And that's really cathartic. And, you know, it really creates bonds.
Shoshannah Buxbaum: The group is a support system for the women. To navigate a new phase in their lives. Here’s Cheryl again.
Cheryl Hart: When you are younger and you have a family to deal with and jobs, you don't, I didn't have a cohesive female component to my life. I mean, I had friends and we did things with them. But it wasn't, it wasn't the continuity that I have with these people just wasn't there.
Shoshannah Buxbaum: And the conversation is lively too. Cheryl often brings a quote for the group to discuss.
Cheryl Hart: So William Seward says, “There was always just enough virtue in this republic to save it. Sometimes none to spare.” *laughter*
Catherine Sharpsteen: Yup. That’s for sure.
Shoshannah Buxbaum: When the pandemic started Catherine Sharpsteen knew that she needed to find a way for the conversation and the relationships to continue. They needed each other more than ever during the pandemic. The group now meets every week. Instead of every other.
Catherine Sharpsteen: I didn't realize how long this would go on. But I realized that there would be a psychological need for people to keep in touch.
Shoshannah Buxbaum: The group’s always been about more than helping each other troubleshoot their projects. But now, it’s even more so. Here’s Karen again.
Karen Hamilton: I mean, half, most of the time now, we don't even know what each other's working on. Sometimes we'll say, "Well, what are you working on?" And they'll hold it up. But typically, it's more about “Good to see you.”
Shoshannah Buxbaum: And “good see you” tends to morph into talk about COVID.
Karen Hamilton: We're really scared of this. My husband and I are very, very afraid. And yeah, some, some other people in the group are too because in the knitting group because they have reason to, you know, most of us have compromising medical stuff. So, it's, it is a big deal.
Shoshannah Buxbaum: Cheryl’s husband Steve recently recovered from renal carcinoma. She has asthma. If she contracts the virus, she’s worried that she’ll die.
Cheryl Hart: So, I internalize the stress. Being able to meet with my friends on Zoom lessons that anxiety.
Shoshannah Buxbaum: And right now there’s a lot to be anxious about.
Cheryl Hart: So, what can you do? You can despair, you can say I can't control anything, this is horrible. I'm just gonna sit in my chair, never gonna do anything. Or you can take care of the people immediately around you.
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Shoshannah Buxbaum: Thanks for listening. I’m Shoshannah Buxbaum. This has been a special about how people with disabilities and seniors have been using technology to stay connected during the pandemic.
A special thanks to Chris Stoker and Amy Notwell at the Speakers as Advocates Network. Matt Wappet and Jolynne Lyon at the Center for Persons with Disabilities at Utah State University. Marla Nef, program coordinator for the Up to 3 program. Terri Yelonek, Executive Director of Active Reentry and Linda Edelman from the University of Utah.
Music by Emily A. Sprague.
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