Elizabeth Jameson

Elizabeth Jameson

My need for a wheelchair came on slowly over the course of 10 years, due to the progression of multiple sclerosis. Over the past 15 years, I have used a cane, a walker, a scooter, and finally, about seven years ago, my insurance covered my first power wheelchair. Now I’m on my third insurance-covered power wheelchair as the more disabled I become, the more advanced my wheelchair needs to be.

As I waited out a year-long exchange between my healthcare advocates and my insurance, I envisioned the chair would be everything “state-of-the-art” implied — light, slick and sleek. Certainly not a 400-pound, clunky, industrial machine. What I received was my most advanced wheelchair yet — offering more power, a head array, parts that adjust with more precision, longer battery life — everything I need to live a full and happy life.

Sort of.

Despite the new technology and functions, the “cosmetic” design leaves much room for improvement. The term “cosmetic” makes me feel like I am being vain. Like it’s the cherry on top, the last minute add on by engineers who have labored over the more complex, more essential parts of the wheelchair. But as an artist sensitive to design and visual impact, the external parts of my wheelchair inform how I am perceived, how I take up space … so this piece is essential. It’s not an afterthought for me, rather it is the very first thing I feel every time I interact with another person. I want my chair to be elegant and innovative — a conversation starter instead of an intimidating machine.

Yet my chair is intimidating — it is a complex medical device. People seem to be simultaneously wary that it is destructive (afraid to drive it) as well as nervous that it is fragile (afraid to touch it or me). My chair is a fortress, impenetrable and unwelcoming. This impacts my daily life, and the burden of overcompensating is draining. Trying to be friendlier, more welcoming, more outgoing, is exhausting. I dream of a power wheelchair that works well and invites intrigue, conversation, and fascination. A chair that allows me to be seen as a complex, interesting professional, a member of the community.

While designers in far off incubators are rising to the task, insurance companies are dragging their feet. Nevertheless, startups are moving forward without the guarantee that their designs will be accepted by the insurance industry, which is critical for the majority of us who rely on insurance. The new generation of chairs may far surpass my state-of-the-art behemoth, but many of them are financially out of reach.

My assistant and I recently wrote an article about self-driving technology (see Resources), wheelchairs, and how people like me might benefit from the combination. We realized that the wheelchair market is waiting to explode — what with a current base of 6 million wheelchair users in the U.S. alone, and the global aging population, as well as an increase in illness and disability. More people will be in need of wheelchairs, and rapid advances in technology can meet these needs better than ever before. The technology to create user-friendly power wheelchairs is already in existence.

Discovering this got me interested not only in the tech side of wheelchair design, but also the exterior elements — the cultural, societal implications of design choices or lack thereof. With a little digging, I discovered beautiful wheelchairs designed by Scewo and WHILL. I was delighted. I wanted one. But as I dug deeper, I discovered every person depending on a wheelchair for mobility has a diagnosis, has medical needs, has a story. In turn, every chair has a story, with pros, cons and most importantly, insurance issues.

Scewo, an innovative, stair-climbing chair initially prototyped in 2014, is still in the incubator phase, without a price tag — but a utopian video they posted gives me hope of technological advances in the future. Yet without cooperation from the insurance industry, who can use this?

The author loves the look of WHILL mobility devices. “Well-designed wheelchairs transform lives and redefine society’s perception of illness and disability.”

The author loves the look of WHILL mobility devices. “Well-designed wheelchairs transform lives and redefine society’s perception of illness and disability.”

I was excited to learn that WHILL has three wheelchairs on the market that are user-friendly, beautifully designed and innovative. They are Bluetooth integrated for instant tech support, able to ride on rough surfaces, compact and, in some cases, collapsible and portable. Unfortunately, only one model — the Model M — has been FDA approved. WHILL is very upfront about the difficulties and obstacles to getting insurance coverage. As representative Jeff Yoshioka commented, even though private insurances such as Blue Cross Blue Shield have covered as much as 60 percent of the Model M, “in our opinion, it is always  worth trying to obtain Medicare reimbursement. Although WHILL customers have had success receiving reimbursement through private insurance, a high level of persistence will be required … be prepared to insist on additional funds; it will require your unwavering effort.”

When we asked why the other two models were not submitted to the FDA for approval yet, Yoshioka stated there is a reluctance of insurance companies to authorize the devices.

As someone who came to rely on a wheelchair later in life, I had the benefit of interviewing Mark Smith of Pride Mobility/Quantum Rehab for this article. As a lifelong wheelchair user who has chronicled the industry for NEW MOBILITY and on his personal website, powerchairdiaries.com, Smith’s perspective is completely different from mine. From his viewpoint, the industry has evolved over the past several decades from a mere medical model to one that is more focused on the needs and desires of its customers, of which the most important is enhanced independence. In regards to wheelchair design, Smith admitted that “there’s still a long way to go with the further evolution of power chairs for those with disabilities.”

Wheelchair design has been a historically neglected afterthought, but the current generation of designers are more disability conscious than their predecessors, and more innovative design has just recently begun to gain traction. If we could take the design process a step further and convince insurance companies to recognize the critical importance of the exterior parts of the chair, then the very same engineers who designed my fortress could transform it into a user-friendly and approachable device, and could vastly improve the health of those of us who depend on wheelchairs.

While we should celebrate the strides made in the industry, we should not overlook design flaws in current, insurance-approved wheelchairs. Combining form and function is not a perk or a luxury, but rather a medically necessary strategy that is crucial to our mental health. Well-designed wheelchairs transform lives and redefine society’s perception of illness and disability. If insurance companies can get on the bandwagon, it will help enable people with disabilities to live fuller lives.

• WHILL, whill.us
• Scewo, scewo.ch
• Scewo video, youtube.com/watch?v=CzsnByh9c7w
• Elizabeth Jameson and Catherine Monahon, “Self-Driving Car Tech Can Help Another Form of Transport: Wheelchairs,” Wired.com, wired.com/story/self-driving-car-tech-can-help-another-form-of-transport-wheelchairs/