In collaboration with PathPoint’s Community Integration Manager Gil Addison, Jamie’s sister Kathy Burba, their family and the team at PathPoint, Jamie (when she’s not volunteering at Cottage Hospital, making films or writing her autobiography) is helping to invent and innovate adaptive technologies to expand access and quality of life for people with reduced mobility.
Anne-Elise Sudduth is Jamie’s Service Coordinator. “Jamie is an inspiration to all she meets. Within the past few years, Jamie has been introduced to adaptive technology that has opened a whole new world to her. With the help of Community Integration Manager from PathPoint, Gil Addison, she’s become a film editor, made training videos for her support staff, as well as a documentary of her journey as a cancer survivor. She’s now working on writing an autobiography.”
“I’m working on a book with Gil,” Jamie recounted, sharing her work with the Community Access Project program. This autobiography as well as film projects have been created with adaptive equipment on her iPad and the computer. “She’s been a leader in the community, with the help of Gil. It started with a great partnership,” related Kathy. “She and Gil are like family now.”
Jamie learned of her cancer in 2014 shortly after starting her writing project. “The doctor helped me,” she recounted “it was Dr. Kimberly Grafton.” After a mastectomy, she had chemotherapy. “Mama, Dad and Kathy came. Mama was worried. We were in the surgery room. I had bubblegum medicine to put me to sleep.”
To celebrate the end of her weekly chemotherapy treatments, Kathy and Jamie did the Barbara Ireland Cancer Walk. “Jamie was the second highest fundraiser of that walk,” her sister shared proudly.
“You might even see the commercial,” Gil added. “They always put it on KEYT.”
The sisters also take part in another cancer walk each October. This one is not designed for people in wheelchairs but that doesn’t stop Jamie from cheering. Kathy continued, “Jamie is a cheerleader! She has pom poms.”
Now Jamie’s working on a project to help others around cancer. Using an iPad she controls with her cheek, she made a movie to support others dealing with scary medical procedures.
Gil showed the adaptive stand that Jamie uses to support the iPad. “This technology has been around for a while, but we adapted it. Assistive technology has opened Jamie’s life. She’s made nothing but progress from the first day I showed her what it can do. She keeps developing and learning new concepts. She’s mastering new tools – – the computer and iPad with accessibility features. Jamie’s just amazing! She does her own research. And I think this is one of the key elements to Jamie’s discovery.” Gil explained the ‘journey of discovery’, “Once she started understanding how to operate assistive technology, it opened her world, and through the process of the cancer, she started studying and learning what to expect at the doctor appointments, dispelling fears around appointments.” The process has been an empowering journey for Jamie. She also uses the iPad to talk to her family.
“She Facetimes me at least once a day,” Kathy laughed, “sometimes more.” Jamie calls both parents each week. With access to the Internet, she can learn about what is important to her. That’s how she found out about the cancer walk.”
“She has a Facebook account,” Kathy gushed, “she does Facetime all the time. Now she’s texting but the spelling is a problem. It’s a new challenge that leads to another developmental goal. This new self-actualization resulted from the cancer. Something that could have been awful became a powerful catalyst. It started with the partnership with Gil and the adaptive equipment. It moved to little tools like this stand to hold her water, then the computer, and now this whole program. Jamie was one of the first to get these tools, she’s our pioneer. She’s taught other people how to use it, too.”
“Everything that Jamie and I have learned together,” Gil went on, “has really allowed me to take these ideas and concepts, and to spread them out throughout our whole organization. I show them, ‘This is what Jamie can do’; for example, I was in San Luis Obispo talking with someone about adaptive technology, when Jamie called me. ‘It’s Jamie! Let’s talk with her!’ Jamie’s actually talking with someone I’m working with, they’re talking and collaborating and sharing ideas and it’s amazing.”
“This wasn’t a funded program,” Kathy pointed out. “This was just ingenuity and heart.” Gil used existing supplies to start the program, which is now funded, partially through a state grant from Home and Community Based Services.
“When I first got this job in 1998,” Gil recounted, “it was just about ‘how can I help people become independent and happy?’ And there were two people there at the time; one was struggling and one was happy. So I decided to try and make a difference. At that time, Jamie was using lower technologies. I wondered, ‘What else is out there?’ So we found the Erica System with first-generation eye gaze in 2004, where you just look at the screen to move the mouse and control the computer. Then we started finding switches and software. It just kept growing.”
“We were watching a show called This American Life on Michael Philips, an individual in a wheelchair who was using amazing technology. We stopped the video and discovered proximity sensors and this new device called Swifty by Origin Instruments with SwitchXS by Assistiveware. The new software, Proloquo2go produced by Assistiveware, was a popular communications software for iPad. I set Jamie up with a switch, and said, ‘it scans and it moves your mouse. I just let her explore it. A half hour later she had it down.”
“She’s a fast learner,” Kathy shared proudly. “She can do things on the computer that I can’t. She can troubleshoot. She can drill down into stuff. She gets it and she practices.” Gil challenges her by speeding up the mouse. “Just stretching the muscles,” he explained. “She knows I’m right there. It’s been an exploratory process.”
“She’s providing an example that others can follow,” Kathy continued. “Her house mate Greig saw her iPad, and he wanted one. Then Watson wanted it, and now three people at her house are actively using their adaptive gear on their own. The other day Greig called my parents by mistake instead of his, but it doesn’t matter… we’re all family.”
It’s much easier, with Facetime, for example, to show Jamie what her family members are doing, rather than trying to describe “walking the dog” or “doing the dishes”. She can see what’s going on directly.
“I like that,” Jamie affirmed.
“It’s bringing her world a lot closer to her,” shared Gil, “all the mystery throughout her life. It’s like, ‘oh; that’s why’. I see a lot of the people that we support here, who have a similar mystery. I wish we’d had this technology twenty years ago!”
Gil elaborates, “It’s constantly changing. I foresee in the future that Jamie could have an electric wheelchair that she could actually control herself, through facial gestures or minimal range of motion.”
“I want one!” was Jamie’s response. “You’ll get one as soon as it’s available,” Kathy laughed.
Jamie is also testing new software from Cognixion, formerly known as Smartstones, that includes an app called SpeakProse. This allows people who can’t click buttons to communicate with gestures, tapping, and eye gaze.
“I have the best team,” Jamie grinned. “I want to advocate for breast cancer survivors. I want to help.”
Jamie’s team is with her. “What’s next is smart homes,” Gil predicted, “where Jamie can control the thermostat, open and close the curtains, use the iPad to see who’s at the door, unlock the door and let them in. There’s so much potential.”
Gil continues, “The next year is about figuring out how to build bridges between the home environment, day program, and the community.” These new technologies are becoming more accessible. Learning and creativity, combined with progressing technologies is giving people new ways to communicate and to control their environment. “We’re pioneering the tools of the future now,” Gil explains, “and will share the results of the pilot with the community. We’re changing the world.”
See Jamie’s movie:
or search “Jamies Story A year in the Life My Cancer Journey”
Donate to the PathPoint Adaptive Technology Program: