Design for Disability: Lariq's Story and Lessons in Collaboration
As I reflect back on the semester for JeffDESIGN, I am proud of what we accomplished in such a short time. What started as a crazy idea, turned into a truly meaningful experience for everyone involved. Personally, I learned a great many lessons from coordinating the class (probably more than my students did :-P). For me, the goal was always to create a unique co-creative learning experience, routed in reality, with design thinking at the core, and delivering content was was meaningful to both doctors and designers. Easy, right! One such lesson I learned developing this course, that I would like to explore with this post, is that the contributions of others were essential to its success. One such contributor, was Lariq Byrd, a bright 16 year old Philadelphian who loves sports and writing spoken word.
The day after Christmas last year, Lariq became a victim of gun violence. While hanging out on the front porch of his friend's house, he found himself caught in the crossfire of a shooting and was hit by two bullets. One of those bullets struck his spine, leaving him tetraplegic, only able to move some of the muscles in one of his arms and needing a ventilator to breath. Doctors told his mother he may never be able to speak again, but Lariq spoke his second day in the hospital. Over the past year, Lariq has made some incredible advancements despite his poor prognosis at the time of injury, and has surprised everyone with with his indomitable spirit. In a recent interview, Lariq said it best, “Nothing has changed about me except that I lost mobility, my attitude hasn’t changed.” Lariq had won a poetry competition before his injury and was supposed to present his poem at an event in the new year. Just a couple months after his injury, Lariq recited his poem to the audience vial webcam from his rehab hospital bed.
Lariq has many of the same goals and dreams he did before his injury. He wants to go outside, play sports, go to school, and become an engineer. He also wants to write again, with his own hand, putting pen to paper. Lariq is very open about what happened to him and you could hear a pin drop in the room as he recounted his story to the class. He hopes to become an advocate for those affected by spinal cord injury. Lariq joined our class for the second half of the course. The students having got their feet wet with 3D printing technology during the first part of the course, were put into teams and worked with Lariq to identify his unique needs and develop solutions that address those needs. From the many discussions with Lariq, a few key needs seemed to emerge. Lariq wants to get back to school, he wants to write with pen and paper, and he wants to play games/sports. Armed with those challenges, the students got to work with Lariq as both their stakeholder and design partner and over the remaining weeks of the course developed novel solutions, specifically tailored to Lariq’s wishes and needs.
While Lariq was the core of our class, there were many others who contributed to the success of this course. I commented on some the great speakers we had for the first half of this course in my first post about Design for Disability. The first speakers who kicked off the second half of the course were two Occupational Therapy professions from Thomas Jefferson University, Kim Mollo and Stephen Kern. Not only did they give a great presentation about occupational therapy and assistive technology application, but they are the ones who connected us with Lariq, via a colleague who was Lariq’s therapist when he was in rehab, Gina Cooke. Gina, Kim, and Stephen were invaluable to the course, gave a ton of their own time attending every class, and helped the students by providing their expertise during the design process.
For the next class we were joined by Brian Burkhardt, Clinical Assistive Technology (AT) Engineer at the Hunter Holmes McGuire VA Medical Center in Richmond, VA. One of just a handful of engineers in the country working directly with patients to develop customized AT solutions, Brian is working at the bleeding edge of his field and providing a very unique and personalized type of care for his patients. Together with his colleague Ben Salatin, Brian and Ben started the AT engineering program at the VA and are filling a need for our nation's veterans, working in the gaps where consumer products fall short. We were lucky to have Ben drive up to Philly from VA when his flight was canceled and talk to our students about the needs of those with disabilities and how smart, patient centered engineering, can help.
For the final class of the semester, everyone was excited to see what the teams had come up with. We had 7 final teams with a mix of industrial design, medicine, and pharmacy students. We were joined by Tom Wlodkowski, VP of Accessibility and Multicultural - Technology and Product, and his team from Comcast. Them and others from Comcast, Thomas Jefferson University, and Philadelphia University attended to provide feedback on the product presentations, with Lariq having the final say, of course! I was glad we had such a great audience to watch the final presentations, because the student teams did not disappoint.
Even under very tight schedules and with a full load of courses, the class developed some incredibly impressive and meaningful solutions. Some of the favorites included a Wii remote that can attach to Lariq’s wrist with velcro and had externalized buttons that were to be mounted in his head rest. Another was a skate that Lariq could rest his forearm in to help stabilize his arm when writing. A couple teams devised solutions for allowing him to grasp and hold items such as utensils and writing implements. One team took and Amazon Echo Dot, something that is already an incredible accessibility tool, and made a modified head rest that could hold the device and had built in speakers making it easier for him to communicate with it.
Everyone in the room was floored by the ideas and a few teams were invited to come to the Comcast Accessibility Lab to help develop the products further. It was very clear that the students had gotten the point of the course, they had focused on practicing empathy in their design, developing products using available technologies based on Lariq’s actual needs, and did not let their own assumptions guide their ideas. This led to solutions that were innovative, personalized, and meaningful. Lariq, being the gentleman that he is, refused to name a favorite product, although I definitely saw his face light up when he saw the hacked Wii remote! Despite us owing him so much for joining our class, Lariq expressed his gratitude to the students for working with him to design things just for him.
Looking back, it’s amazing how many people had to come together to make this learning experience possible. There were so many that I decided to list them all out. When I was finished, I realized that this list almost mirrors the complex team required to care for someone in today’s healthcare environment and reinforced that this is what the classroom of the future must look like if we are to prepare providers to work in such a complicated system.
Is this a list of what it took to run Design for Disability or what it takes to care for patient with a significant medical condition?
- 2 Universities
- A Rehab Hospital
- Medical Students
- Industrial Design Students
- Pharmacy Students
- Occupational Therapy Students
- a Physician
- a Pharmacist
- Occupational Therapists
- Industrial Designers
- an Architect
- Accessible Transportation Specialists
- Founder of an International Non-Profit
- 3D Medical Imaging Specialist
- Clinical Assistive Technology Engineer
- 3D Printing Community Leaders
- 3D Printed Prosthetic Community Foundation
- Industry Consultants
- Private Industry Partners
Moving forward, we will be continuing to engage with Lariq and our other partners to make sure that some of the best concepts get fully realized so that he can utilize them. We already sent Lariq home with the Echo Dot Headrest, and will be soon turning over the hacked Wii system to him for testing and feedback.
Another way we are trying to help is in raising funds for Lariq to get a power lift installed on his home so that he can more easily leave his house. Unfortunately, PA state medicare will not pay for home modifications for a child who does not have cognitive disabilities, leaving his family unable to afford the minimum $20,000 cost of installing an ADA approved lift on his home. Check out the video below to see me desperately holding on to Lariq so that his wheelchair doesn't tip over while navigating the home-made plywood ramp he currently relies on to leave his home. This ramp won’t last another winter and many Philly ambulance companies already refuse to transport Lariq to his appointments because the ramp is a danger to their employees. I encourage you to watch this incredible video produced by our partners at Comcast, learn more about Lariq and our program, donate to help Lariq gain back some independence via his GoFundMe page, and then share it with everyone you know.
Also, check out Lariq and our program featured on the Fox29 Morning Show!
UPDATE! We delivered Lariq a functioning accessible Wii!!!! One of the products from the class!
Thank you to Mike Avery and Todd Corlett for making the collaboration with Philadelphia University possible and for helping to coordinate the course.
Also a HUGE thanks to Comcast, for supporting the course and hosting us at the Comcast Collaboration Studio in Philadelphia, PA.