Through the Screen: Disability, aging and technology
The Covid-19 pandemic has fundamentally altered what it means to stay connected. These are stories of how technology has shaped the lives of people with disabilities and seniors in Utah.
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Listen to the half-hour audio documentary about everything from getting hooked up to the internet for the first time, to the hurdles and expanded opportunities of remote work.
Read the Full Transcript
Read and listen to the individual stories below:
Pandemic Epiphany
Preston Parrish woke up early one morning and opened his eyes. He kept blinking, but there was no light coming in. He was blind.
His vision had been a little hazy for about a year. But, this was a shock.
“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,” said Parrish.
He lost his vision because of diabetes. His doctors thought they might be able to restore his sight. He had several procedures and a surgery to reattach his retinas. It didn’t work.
At the time, he was on dialysis awaiting a new kidney. Since he was immunocompromised he limited his interactions. His world became very small.
“It was like I was in a bubble,” said Parrish.
Preston went to dialysis several 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. Preston wasn’t ready.
“I shined him on and told him, ‘No, I don’t want to do it, because I was, I was feeling self pity,’” said Parrish.
After 15 years, Preston finally reached out for services. Just a few months before the pandemic started, 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 called JAWS.
“JAWS will tell you exactly what you’re doing when so you really don’t need your eyes. All you need are your fingers,” said Parrish.
The tech also told Preston about all of the programs the Center offered. Classes on things like braille, navigating with a cane, woodworking and how to do household chores.
“I couldn’t believe all of the stuff that was going on and how fluent and efficient he was,”said Parrish. “He was just as blind as I was.”
In fact all of the techs from the division are blind.
“It’s so critical for blind individuals to be teaching other blind individuals,” said Everette Bacon, field services coordinator at Utah’s Division of Services for the Blind and Visually Impaired. “So when you actually have blind instructors, like myself and others going out, then, you know, it becomes more real.”
It’s not just about helping people to set up their tech, said Bacon. It’s about showing newly blind people what’s possible.
“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,” said Bacon, who’s been completely blind for about 10 years.
Once the pandemic started the center was closed and service techs weren’t going into people’s homes. They had one on one virtual sessions. The center also started hosting daily zoom meetings.
“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,” said Parrish.
The meetings were ostensibly about tech troubleshooting. For Parrish though, it was really about getting to know other blind people.
“I’m asking questions that I thought I couldn’t be,” said Parrish. “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!’”
The fact that Parrish couldn’t actually go do any of these new things right away didn’t get him down.
“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,” said Parrish.
Preston’s in the process of transforming his house into a smart home. It’s the little things that make a big difference.
“I used to leave my TV on because whenever, whatever, program was on I would know what time it was,” said Parrish. “Now, all I have to do is just go, ‘hey Google, what time is it?’” said Parrish.
It was connecting with other blind people, even remotely, that made him understand what’s possible.
“If you have communication with other blind people, then, you know, one, one person with information, can, can open the eyes of many,” said Parrish.
For newly blind people, accepting that their lives will be different is the hardest part, said Bacon.
“As much as technology is a wonderful thing,” said Bacon. “Until you kind of come to that emotional understanding and acceptance. All that technology is just wasted.”
Advocating Virtually
Kelly Holt lives in Price and 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.
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.
Pitfalls and Promise of Remote Work
I knew that zoom didn’t work well for Katie Lynn Adams-Anderton because the program doesn’t automatically generate live captions. We had talked about it at length. And I still forgot. I sent her a zoom invite for our interview. I felt stupid. She was gracious.
“It’s okay. It happens all the time,” she told me.
We ended up using Google Meet instead — it has built in captions. That’s key for Adams-Anderton because she has auditory processing disorder and also has hearing loss. Now that virtual meetings are the norm, zoom has become ubiquitous.
“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,” said Adams-Anderton.
When Adams-Anderton said 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. There are also free professional captioning services that you can add on to zoom. The problem is that most people don’t even think about it.
“I think it’s genuinely like, just a forgetfulness of just like, how wide spectrum of people need captions. Because like, I’m not deaf,” said Adams-Anderton. “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.”
In elementary school Adams-Anderton had severe ear infections. She had several surgeries and tubes put in her ears. She didn’t hear at all from first through third grades.
“Because I didn’t hear through those very important times,” said Adams-Anderton. “I don’t hear correctly.”
She had surgery to graft a new eardrum to repair the damage from the infections and she did eventually regain some of her hearing. She continues to experience the symptoms of auditory processing disorder.
“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,” said Adams-Anderton.
Adams-Anderton has been hesitant to disclose her disability, and ask for accommodations, especially at work.
“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?” said Adams-Anderton.
It’s common for people with disabilities to face workplace discrimination, said Sachin Pavithran, executive director of the United States Access Board.
“There’s this ideology that people with disabilities are not as productive,” said Pavithran.
But, it’s the stigma around asking for tech accommodations that’s actually making Katie Lynn less productive because she is constantly looking for time-consuming work-arounds. She’s the vice president for compliance for a background screening company in Draper.
She recently went to a virtual work conference and there weren’t any captions.
“I rewatched the conference two to three times per session, just so that I could capture it all,” said Adams-Anderton.
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.
The virtual office work has created new challenges for Adams-Anderton, but for many people with disabilities remote work might actually expand employment opportunities.
“These are platforms, who, 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!’” said Pavithran of the United State Access Board.
Pavithran is blind. He’s thrilled that remote meetings are now the norm. He acknowledges that his job is more accommodating than most. Still, 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.
“I’ve got to meetings, and I’m standing in the hallway for like, a half an hour, 45 minutes, because there’s really no other place for me to sit and wait,” said Pavithran. “It’s hard to explore when you’re blind person, when you’re by yourself.”
Transportation remains one of the biggest barriers to employment for people with disabilities, said Sachin. Just under 50% of people with disabilities in Utah have jobs at all, according to census data from 2018.
Now that employers have been forced to adapt to remote work there may be a lasting impact.
“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,” said Pavithran.
It’s still too early to know if there will be a permanent change. Adams-Anderton hopes that this moment might provide an opening for people with disabilities to be part of the conversation.
“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,” said Adams-Anderton. “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.”
In Good Faith
Amber Orvin is a speaker with the Advocates as Speakers Network and lives in Hurricane with her dog Tiger Lilly. She’s grateful to have technology to connect with friends and family. But, technology can’t quite replicate the energy of being together physically.
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 and the primary secretary and midsingles ward representative in my ward. I haven’t done any of 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 each other, 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.
Digital Transition
Nita Budo, 80, recently got hooked up to the internet for the first time
“I never thought this would ever happen,” said Budo, a Price resident.
Budo attends virtual programs run by Active Reentry, an organization that provides services for people with disabilities living independently in the mostly rural Eastern part of the state.
Within two weeks after some counties issued stay at home orders in mid-March, Chris Haycock, Active Reentry’s community integration and youth coordinator, had a slate of virtual programs up and running. There were support groups for kids and adults, cooking classes, virtual visits to museums, zoos, and even to the US Capitol.
“I never once thought that we would be using Zoom to provide services at all,” said Haycock.
There was one issue: many of their clients couldn’t get online.
“Our big focus was to find those consumers that didn’t have anything right then and there,” said Haycock.
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 was training folks on how to use their new tech.
“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,” said Budo.
Chris and his team were there to guide her through the process.
“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,” said Budo.
It’s important for people with disabilities to remain connected to their peers, said Haycock.
“If you’re not connected to other people then 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,” said Budo.
Arven Hansen also just got on the internet for the very first time. He was born with a cognitive disability. Hansen has been going to Active Reentry programs for the past twenty years. But, they’re not quite the same virtually.
“This is better than nothing,” said Hansen. “I’m kind of a social person. That’s what’s been hard about the whole thing is that you can’t interact with people like you should.
For Hansen, the most important part of the programs before the pandemic was socializing. “You meet friends for life,” he said.
Arven Hansen and Chris Haycock first met 12 years ago, when Haycock first started working for Active Reentry. They have become close over the years. It’s like that for most of Chris’ other clients too.
“We’re their support system. And a lot of them, they probably view us as family, they feel comfortable. We’ve had that connection with them for years,” said Haycock.
Hansen isn’t sure if he’ll keep using the internet after the pandemic is over. As for Budo, she’s hooked. She loves the cooking classes that Active Reentry offers, which got her looking online for new recipes.
“I started into this plant-based foods. I was looking at soups and I was looking how to make rice,” said Budo. “I says, it was a lot of fun to thumb through it.”
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.
Small Tech
Jordan Snell, 27, is studying technology and engineering education at Utah State University. He’s interested in the small machines we often take for granted. He has a side business fixing them.
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 and using my hands and figuring out how things work and why they’re not working.
Because of the pandemic, I only did a few jobs in the summer for established clients. It was, it was quite the financial hit over the summer.
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.
Pick Up and Knit
Someone couldn’t find the meeting ID. A chime rang out as people entered the zoom room, interrupting conversations mid sentence. Everyone was eager to say hello to each other. The knitting group started.
Catherine Sharpsteen, 70, moved the group online in late March. Her writing group had already gone virtual. 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.
“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,’” said Sharpsteen with a chuckle.
“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,” said Cheryl Hart, a retired singer and one of the group’s longtime members.
One of the small but significant differences about meeting virtually: the snacks.
“We have to bring our own snacks and eat them here and we don’t get to share,” said Hart. “Because everybody is a really good cook and people bring really honest, good true snacks, not just junk.”
Karen Hamilton was the one who originally started the group about eight years ago, after she retired from teaching.
“I’ve always wanted to know how to knit,” said Hamilton. “I thought the best way to do it is start a knitting group, and then they could teach me.”
Even though she started the group, Hamilton doesn’t think of herself as the leader.
“What I do is, like, I’m one of those instigators,” said Hamilton. “I get things started, man, I pull back and 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, sewing. When Catherine Sharpsteen first joined the group she wasn’t crafting per se. She was using the time to sort her husband’s baseball card collection.
“He had gone into the nursing home, and that those cards had to go somewhere,” said Sharpsteen.
Her husband had dementia. The group helped her through it as she watched him slip away. Then they supported her when he died about two years ago.
“For me talking is, really, really makes a big difference. If something upsetting has happened to me. I want to talk about it,” said Sharpsteen. “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.”
The group is a support system for the women as they navigate a new phase in their lives.
“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,” said Hart.
The conversation is lively too. At a recent meeting Hart shared this quote from William Seward: “There was always just enough virtue in this republic to save it. Sometimes none to spare.”
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.
“I didn’t realize how long this would go on,” said Sharpsteen. “But I realized that there would be a psychological need for people to keep in touch.”
The group’s always been about more than helping each other troubleshoot their projects. But now, it’s even more so.
“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,” said Hamilton. “But typically, it’s more about ‘Good to see you.’”
And “good see you” tends to morph into talk about COVID-19.
“We’re really scared of this. My husband and I are very, very afraid,” said Hamilton. “You know, most of us have compromising medical stuff. So, it’s, it is a big deal.”
Cheryl Hart’s husband Steve recently recovered from renal carcinoma. She has asthma. If she contracts the virus, she’s worried that she’ll die.
“So, I internalize the stress. Being able to meet with my friends on zoom lessons that anxiety,” said Hart.
And right now there’s a lot to be anxious about.
“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,” said Hart.
