On most days, author and activist Shane Burcaw can be found working on his laptop or his phone. That’s where he does a majority of his job: responding to emails about his nonprofit organization, Skyping into classrooms to speak to students about disability, and writing about his life with spinal muscular atrophy.
But until recently, Burcaw was unable to independently move out of that position while his fiancée, Hannah Aylward, was away from their apartment. Due to the progression of his disease, Burcaw does not have the ability to get his hand on the joystick to move his wheelchair.
“I was stuck there because I had no way to access my joystick,” Burcaw said in an interview with Mobility Management. “I had multiple times when there was something I needed from another room, or the doorbell rang, and I had no way of getting there.”
He didn’t realize there was a potential solution to the issue until Mary Kay Walch, the sales and marketing director at BlueSky Designs, contacted him about potentially donating a wheelchair mount to Laughing At My Nightmare, Burcaw’s nonprofit that provides medical equipment grants to people with muscular diseases.
That message eventually led to a partnership for the launch of BlueSky’s Pow!r Mount’n Mover, a product that gives power wheelchair users control over the positioning of their mount using a switch on their chair. Mounts are typically used to help people use computers, read off iPads, talk with speech generating devices and more.
The system, which has been in the works for decades, aims to give users more independence as compared to a traditional static mount, according to BlueSky CEO Dianne Goodwin, who founded the company in 1997.
“Initially, I had two [mount] solutions in mind: one that people could move with the use of their arms and the other one, a powered one that could be operated by a switch,” Goodwin said. “But dreams take a long time to realize.”
BlueSky earned its first federal grant to develop a movable mount in 2003. After receiving a grant in 2012 to further develop the power mount, the company focused on creating a more elegant and flexible user interface, a switch activated phone app, for its power mounts.
By 2018, Goodwin decided that BlueSky should release a hybrid system that worked with its movable mounts. The company offers two hybrid mount options: one with a power shoulder and one with power tilt, designed for people who need to readjust their eyegaze devices.
“We decided to start not with the whole enchilada, not with the multi-joint powered system, but with a hybrid system,” Goodwin said. “We keep moving forward because we really want folks to have independent access and the ability to move things themselves.”
Burcaw’s wheelchair is now equipped with another BlueSky offering, the single power joint, which is adaptable and allows the user to move a device of their choosing using a rotating joint. On the “Squirmy and Grubs” YouTube channel he runs with Aylward, Burcaw shared the consultation and installation process for the mount in BlueSky’s Minneapolis office.
Since then, Burcaw and Aylward have noticed major changes in his ability to move around their living spaces. Aylward said by email that he is now able to sneak into rooms to scare her, among other actions Burcaw wasn’t able to do prior to working with BlueSky.
“I’ve gained back years of that independence that I lost, and I now feel comfortable and safe being alone,” Burcaw said.
One of the biggest challenges for the power mount, Goodwin said, is getting patients and therapists to break out of the status quo and understand the potential benefits of a new product. While a speech therapist or sales representative may be primarily concerned about where to place a speech device, the user is more aware of the limitations of the mounting system.
“That’s a hard thing to really convey to the public out there, but a lot of people with disabilities, they understand it immediately when they see it,” she said.
Since announcing the product in August, BlueSky and Burcaw have hit the road to promote it at conferences, including a presentation at The Closing The Gap Conference in October. Next up: the Assistive Technology Industry Association (ATIA) conference in Orlando in early 2020.
Burcaw said he is excited to share the product with the disability community using his public platform, including his YouTube channel with close to 500,000 subscribers. He has seen the impact of assistive equipment up close, both through his own experiences and the work of Laughing at My Nightmare, which has provided about $200,000 in equipment grants.
“I can’t really explain the feeling of seeing a person or a family have an item that changes their lives,” Burcaw said. “There’s this idea that we, people with disabilities, are not living productive or happy or satisfying lives, and that is completely untrue … We just need the access to be able to do the things we need to do.”