Education meets innovation: Interior design students envision accessible future for teen living with rare progressive disease

A plea for help on the NextDoor app has opened the door to new career opportunities for Western students and new hope for a family responding to a rare disease diagnosis.

"It gives me goosebumps to think that something I do before I even enter the field could help change a family's life," says Carolynn Hoezee, a third-year interior design student from Byron Center, Michigan. Alongside her classmates, she's found purpose in putting her education into practice.

Now 18 years old, Donovan Lassig has been through a lot in his young life. At the age of 2, he was diagnosed with cerebral palsy (CP). He endured a number of major surgeries and therapies to address his symptoms, but instead of stabilizing, his ability to walk only worsened when he became a teenager.

"He went from walking with crutches around our home, up and down stairs … to within about 12 to 16 months losing his ability to walk freely," his mother, Bridget Lassig, B.S. '97, says. "We went exploring and took him to multiple highly regarded medical facilities for opinions. We landed at Boston Children's Hospital, and they knew rather quickly that he didn't actually have CP."

In reality, Donovan has a disorder called hereditary spastic parapalegia (HSP). The big difference is while CP is static, HSP is progressive. Puberty accelerated the degeneration of the motor neurons controlling the movement of his legs. Eventually, he will lose the ability to walk.

"(The diagnosis) was kind of terrifying," he says.

The rapid change in his condition has left Donovan isolated. Because getting around is increasingly difficult, he is mainly confined to his bedroom on the second floor.

"We accommodate him by putting hand grabs everywhere, because he's a teenager who doesn't want to use equipment in his 'free zone.' So every step he takes, there is a grasping point," Bridget Lassig says. "To leave our house, whether he's going to school or an appointment or whatever, he rides a four-wheeler. Our house is built into a hill, and our second floor has a deck. So he can get out to the deck, and get on the four-wheeler, and ride it to the garage and get in the car. That's how we function right now."

A TURNING POINT

Bridget Lassig knew in order for Donovan to thrive, her family needed to move. But finding an accessible home on the market proved nearly impossible. In an act of desperation, she turned to the NextDoor app hoping someone might know of a home for sale or a potential buyer for her own so her family could start building a house that meets Donovan's rapidly changing needs.

Kim Buchholz, director of Western's interior design program, saw a learning opportunity for students in her Residential Architectural Design (RAD) Studio when Lassig's post appeared in her feed.

"I connected with her … and asked if she'd be willing to share her story with the students, because in this course, we really look at what's causing people to live in different scenarios and more social-based residential design. In previous studios, students have done low-income housing for elderly community members in Allegan County … and they've also designed refugee housing."

Lassig welcomed the chance to explore possibilities for her family's future home design as well as raise awareness about HSP and housing challenges facing people with disabilities. In spring 2022, Buchholz's class got to work.

"They interviewed us very thoroughly. They got to see the space, see how Donovan functions; he met them in the driveway on the quad and showed them how he gets into the house," Bridget Lassig says. "They just did a wonderful job."

Students also completed a site analysis on a plot of land in Kent County in West Michigan that a farmer has agreed to sell the Lassig family.

"They looked at the climate, how the sun interacts with the site, what the views are, everything down to the soil composition so we can better understand the foundation and what crops (Donovan) could grow on the land," Buchholz says.

"Something that really made me emotional was … they get to eat family meals maybe two times a year, like Thanksgiving and Christmas," Hoezee says. "Family is really important to me, so I really wanted my design to focus on unity and ease of movement throughout the home and a central area where everybody could spend time together."

Ultimately, the Lassigs received 20 unique design plans. Each highlighted different aspects of interviews and research conducted by the students. Some focused on sustainability while others homed in on design features that could make the home feel less clinical without losing function—something Bridget Lassig says is noticeably lacking in many accessible homes today.

"The most common things are adding a ramp, widening doorways, modifying the bathtub … adding handrails," she says. "The (students') design elements did all those things, but they also looked at the quality of life. A lot of their design elements considered how to make this the healthiest space for Donovan and for the family. And that's something I have not really seen in all of my research."

Lassig was so impressed she shared the designs with Disability Advocates of Kent County. The organization featured Western's interior design students in a showcase of young professionals making an impact.

"I don't think we could have done a project like this with just any firm. It's the fresh ideas; it's that they're seeing things through a young person's eyes and they're coming up with creative ideas. They don't know the boundaries," she says. "I think if we went to someone in the industry and said, 'I want to design this cabinet this way,' people would naturally say, 'No, you can't do that. You've got to do it another way.'"

The project also gave Donovan a chance to interact with other young adults—something he has been missing since his condition began limiting his mobility.

"It was a very positive experience. Oftentimes as a society, we just base things on looks or appearances. We see a wheelchair, we hear a difference in speech patterns, and we assume differences in cognitive capacity. And that's really not the case," Bridget Lassig says. "There are some differences, like maybe the response times are a little bit slower, but cognition is not impaired. And the students came in and asked him questions, and the more questions he got asked, the brighter he got. The more information he gave. He had them laughing. Kim told me he had one of them crying, and that's so powerful for him."

IMPACTFUL EXPERIENCE

The next step for the Lassig family is finding a buyer for their house so they can make the students' designs a reality.

"Selling is challenging and building costs are still outpacing sales. However, we are studying each of the designs to select the elements and aspects so we are ready as soon as they can break ground," Bridget Lassig says. "We can't wait to have all the students back to the new house to see the outcomes of their work. As long as they want to stay engaged, we want them to be part of this process until they get to see the results."

While it may take time to see their visions become reality, the project has already made a lasting impact on the students involved.

"The thing that I'm taking away is just how important empathy is in the design process," says Megan Clark, a third-year interior design student from Chelsea, Michigan. "If you design with empathy first, I feel like everything else just falls into line."

"It gave me some perspective on just how critical interior design and architecture is in society today. We have a huge issue with a lack of affordable housing and accessible housing, and it really needs to be addressed," adds Carlee Castle, a third-year interior design student from Muskegon, Michigan.

"The way we build houses in the U.S. does not cater to how people age … and it's not practical for anyone of any ability to live in their house long term. I think this project taught me that there are so many things we can do in residential spaces and commercial spaces to provide that which is really lacking right now."

It's also given Hoezee a potential new career path.

"It definitely confirmed my love for universal design and that I want to incorporate it into every space I do. A lot of times, people with disabilities are just kind of pushed to the side," she says. "It's our job as designers to make sure everybody who is in a space feels comfortable and welcome. It makes me want to start my own firm one day that focuses on specifically helping other firms or people become more aware of universal design."

Through Donovan's diagnosis, Bridget Lassig has connected with a network of families around the world navigating similar challenges. She plans to compile all of the designs developed by Western students and share them with those families who are also struggling to find accessible spaces.

"Every step of this journey, our philosophy is, 'I'm on a ride, and there's a purpose or something's happening for a reason.' And to have it come full circle with Western is pretty cool."