A peek into a collection of newspaper clippings about Ludell Swenson reveals the life of an extraordinarily accomplished person: marathoner, competitive tournament bowler, outspoken social services advocate. But what stands out the most is his lifelong participation in research that would lay the very foundation for the Waisman Center’s Communication Development Program (CDP) and the Communication Aids and Systems Clinic (CASC).
Ludell died Apr. 22, 2020. He was 61 years old.
“I think the Waisman Center has had a significant role in the history of communication aids research and services. Without embracing that and taking some effort to preserve that knowledge, the history could easily be lost,” says Julie Gamradt, the former director of both CDP and CASC, who worked closely with Ludell. “Losing Ludell was just another little connection to that significant past. Ludell’s most long-lasting connection to us during his life was through our service programs,” she says. “He both challenged and inspired us all to do better for people with disabilities.”
Ludell – who had cerebral palsy – had been a patient of CASC for most of his life, participating in early research that revolutionized the field of augmentative and alternative communication (AAC). AAC includes any tool an individual might use to express themself outside of verbal communication, as well as the strategies learned to use them to accomplish goals in daily life. This can include anything from a picture or word board to a more technologically advanced text-to-speech app or device. So successful were Ludell’s experiences in CASC that they led him to a night as a radio DJ!
“He was a big deadhead,” says Liz Hanson, Ludell’s former speech-language pathologist (SLP) in CASC. “He loved talking about The Grateful Dead and he had messages about The Grateful Dead on his communication display.”
Hanson worked with Ludell extensively in her time at Waisman. She recalls the Madison area radio station WORT one day offering the opportunity for listeners to come in and play their favorite songs and give commentary in between. Hanson, who has a background in broadcast media, set things up with the station to give Ludell the access he needed to share his passion for music over the airways. “He came up with a playlist and the station had all of the music,” she recalls. “Ludell and I worked together to develop what he wanted to say to introduce each song. He told me what he wanted to say and then I would program it into his AAC system.”
The station was then not fully accessible for his wheelchair, but employees helped him get into the building and made room for his wheelchair in the sound booth. Hanson and WORT staff were able to connect Ludell’s communication device to the station’s sound board so that he could announce each song by playing one of the pre-programmed messages from his device. For that night, Ludell Swenson was a radio DJ, sharing his love of The Grateful Dead with the radio audience.
Tracing back CASC’s roots
The story of Ludell Swenson is in many ways the story of CASC. “Ludell was really part of our programs from the very beginning, kind of inspiring the beginning of it,” says Gamradt. Growing up in the 1960s with cerebral palsy, he had no way of effectively expressing himself and used only a wooden board with letters and common expressions burned into it. These constraints impacted all aspects of his life, including participation in school.
Then, in 1971 when he was 11 years old, he crossed paths with David Lamers and Gregg Vanderheiden, PhD, then both seniors in the UW-Madison Department of Engineering. Having no experience working with individuals with disabilities, Lamers and Vanderheiden organized a team that worked to help Ludell communicate more effectively and efficiently.
“I had actually not met a person with a disability before – and I was a senior in college!” Vanderheiden says. He describes the very slow process for Ludell to communicate anything he wanted to say because the person Ludell was communicating with would have to wait until he was done pointing to every letter on his wooden communication board.
“When you looked away from his board, he was silenced,” Vanderheiden adds. “If you just looked up, it was like putting your hand over his mouth.”
Vanderheiden credits UW engineering professor Richard Marleau for making space for him and his team to help Ludell. Marleau taught an analog computing course at the time and moved all the computers in his lab into a storage room and taught his class in there so that Vanderheiden and his team could use the lab as a workspace.
“To this day, I still cannot believe he did that,” Vanderheiden says. “It’s just unfathomable.”
That gesture led to the founding of the Trace Center with the mission to apply engineering, computer science, disability studies, public policy, and information science to prevent the barriers to, and capitalize on the opportunities presented by, current and emerging information and telecommunication technologies.
Working with Ludell, the Trace Center – then located in the College of Engineering – created the auto-monitoring communication board, which was the first computerized communication aid that gave users the freedom to arrange letters and phrases to express themselves in just the way they wanted to express themselves. The board itself was a hefty tablet that sat above the lap of a wheelchair user.
Vanderheiden recalls teaching Ludell how to use it and struggles to relay the story from laughing so hard, describing Ludell as “a real smart alec.”
“And so, what’s the first thing he’s going to say on this new thing that we just spent all this time on?” he recalls. “What took you so long?”
Vanderheiden’s then colleagues were appalled. “But you have to remember,” he told them, “that last weekend when you were out on a date, Ludell still didn’t have a way to talk. We need to understand that this is something that we all have and take for granted.”
The Trace Center moved to the Waisman Center in 1977. It was there until 1998, but the legacy that it left behind formed CASC, which today partners with families to provide highly specialized, cutting-edge AAC for children and adults experiencing significant communication challenges.
A fierce self-advocate
It was in CASC where Ludell met Hanson and Gamradt. Gamradt’s earliest memories of him were of creating communication boards for him when she arrived in 1986. “This highlighted how vulnerable he was,” she says. “If you’re not able to move and speak, somebody could come into your home and literally take words out of your mouth.”
Hanson echoes this and mentions this as a common frustration for individuals who use AAC—that if the conversation partner is not fully accommodating, the AAC user will not be heard. “The responsibilities of the communication partner are different” when speaking with someone who uses AAC, she says. “You have to be more accommodating. You have to, in some cases, create opportunities for communication.”
Even though Ludell communicated in ways that diverged from what so many are used to, he had no reservations about sharing his thoughts. “As you would make his communication board, he’d want swear words on them and he’d want some rather caustic phrases on them,” Gamradt says.
Those who worked closely with him typically used the word ‘advocate’ to describe who he was as a person.
“Ludell was a strong self-advocate, in addition to a strong advocate for other individuals with disabilities,” says Sarah Marshall, a CASC SLP who worked most recently with Ludell. “He was very actively involved in his treatment. He was comfortable expressing his communication preferences and advocating for the exact type of system he wanted.”
“For me, never having been around people with disabilities much when I was growing up,” says Gamradt, “it was a life lesson to get his perspective in ways that at times were necessary to kind of shake things up.
Ludell showed up at Marshall’s Waisman Center office one day without an appointment. He had ordered a new communication device and was getting impatient with waiting for it to be approved by his insurance company. He wanted to know if he and Marshall could call them together.
“I had asked him how he got to the Waisman Center and he told me he drove his power chair from the east side of Madison because he couldn’t get a ride,” says Marshall. The Waisman Center is close to Madison’s west side. And since Ludell didn’t have his device yet, he very well couldn’t call her.
Before he died, however, he donated that very communication board – a PRC Accent 1400 – to the Waisman Center. “Ludell worked hard to get that device through insurance and the device itself costs thousands of dollars,” Marshall says. “Many insurance companies don’t approve devices and even the policies that do cover the devices can deny coverage. We will be able to use his communication device with patients who might have temporary communication impairments while inpatient at the hospital.
“He was somebody who lived life on his terms as much as he could, you know?” says Vanderheiden. “He lived a full life.”
“I think he represents more than just himself,” says Gamradt. “I think he represents what can happen when somebody in the community connects with somebody working on a research project and how that can plant a seed and snowball into lifelong practice of service and development in that area for a facility like Waisman.”
Since its roots as the Trace Center, CASC has grown its AAC practice into helping more than people with cerebral palsy. It has also come to serve individuals with autism, Rett syndrome, amyotrophic lateral sclerosis (ALS), spinal muscular atrophy (SMA), and Down syndrome to name just a few.
And so much of that history is thanks to a young boy whom Vanderheiden so joyfully describes as a “sassy youngster with a wry sense of humor.”