Can Wheelchairs Get Some Love?

Sharon Sonenblum Editor’s Note: Ride Designs has graciously donated their blog post space to Sharon Sonenblum, a rehabilitation engineer and researcher at Georgia Tech, to share her thoughts and research findings on some very important topics: sitting mechanics, pressure ulcers, wheelchair cushions, and butts. Sharon is Senior Research Scientist at Georgia Tech, and she has been studying wheelchair use, ulcer prevention, and the response of buttocks to loading for over a decade. This is the third and final post in a series. 
 
 
 
Thank you to the RESNA community for what has been an opportunity for me to share the work that I love – the research we’ve done at Georgia Tech on biomechanical risk, cushions, and seating. I’ve appreciated all those who have submitted comments. Now that you know a little bit about me and my research, this post is more personal. I’d like to ask, “How can we get the wheelchair some love?”
 
My colleagues at Georgia Tech and I are very interested in developing easy-to-use tools, such as an app, that will help clinicians match cushions to buttocks and prevent sitting-acquired pressure ulcers for wheelchair users. Our efforts have been limited by the difficulty in securing funding. In fact, funding for wheelchair and wheelchair seating related research has taken a hit all around in recent years. 
 
I’d argue that the decrease in attention and funding for wheelchairs and seating has been largely fueled by the common misconception that wheelchairs are bad. The disparaging of wheelchairs in the media and even within the worlds of rehabilitation and research has become all too common. On the one hand, the wheelchair is an incredible enabling device, providing function for millions of individuals. Yet I frequently hear people who use wheelchairs referred to as “wheelchair-bound” and “confined to a wheelchair,” suggesting that the individuals are trapped by their wheelchair, instead of being enabled by their wheelchairs to get out and be active. At the same time, I often see wheelchair-disparaging headlines like: “Paralyzed hockey teen dreams of a world without wheelchairs” and “Good-bye wheelchair, hello Exoskeleton.” 
 
Now, don’t get me wrong, exoskeletons are really cool. Hopefully, development of this technology will continue to include people with disabilities, and not be dominated by those who wish to build Ironman suits for soldiers. But should it come at the expense of wheelchair research? 
 
It already has. NIDILRR (formerly NIDRR), who for 30 years sponsored a Rehabilitation Engineering Research Center (RERC) dedicated to studying and improving Wheeled Mobility, is now funding multiple Mobility and Manipulation RERCs largely focused on exoskeletons and robotics. The Wheeled Mobility RERC no longer exists as an entity. At Georgia Tech, we’re continuing to do a little bit of research through other grants, but most of that will dry up soon. 
 
While the work being done by the Mobility and Manipulation RERCs certainly has value, the belief that you can replace a wheelchair with a technology designed to support ONE task only (walking) is misguided. Full time manual wheelchair users in our research only wheeled for 1 hour per day, meaning that the other 9-10 hours that they spent in their wheelchair they were stationary. None of the exoskeleton and robotics devices or interventions currently being funded can be an extension of the human body, nor provide a base for stationary activity AND mobility in the same way as a wheelchair, allowing people to engage in family life, employment, sports, and more.
 
Why must it be either/or? The wheelchair is one of the most cost-effective assistive technologies ever developed. It is time to change the conversation and encourage the media, researchers, and clinicians alike to stop disparaging the wheelchair, start acknowledging its many benefits, and bring back the necessary funding and interest to help improve the individualized prescription and designs of wheelchairs and wheelchair cushions.
 
Please share your outrage at how little respect wheelchairs get, and your ideas about what we can do to improve their reputation. Or, alternatively, feel free to make your case for why I am wrong. I look forward to hearing your thoughts!
 

Comments

Submitted by rwest@kubatphar... on

It sems the more that Medicare cuts funding for wheelchairs, the less likely that the funding will be there for reseach development. 
Also, the technology that is developed through research is not seen as beneficial and the funding for new devices has decreased.  In other words, if you develop something great, but it is too costly, there is not adequate funding to purchase this great device that would be most beneficial.  I sometimes have trouble getting the funding necessary for what's already available or just replacing what the individual already has.  You are right in stating the wheelchair needs some love.

Submitted by Randy Geile (not verified) on

With access one of the main issues I would like to see more research and publications on DIY or DIT (Do It Together) options that facilitate well designed user constructed (and no outside funding) options to upgrade existing chairs or provide “beyond hard surfaces” (gardening, hand cycles,…) empowerment.

Submitted by Diane H. Schreibman (not verified) on

This is huge, and I've been saying this for years. The continual cuts to funding products for individuals has resulted in manufacturer research that is primarily focused on reducing costs, and not on innovation in terms of function, lightness, portability, secondary injury prevention, etc. Then everyone gets excited about the shiny new toys that are so much more expensive they are not likely to be available for the general population of disabled users for decades. We have a deep ambivalence in this country to people with disabilities--we spend so much money on saving lives, but once a person leaves the hospital, we begrudge them the few thousand dollars that could allow them to be a functional part of society for many years. In the case of cushions, it's only a few *hundred* dollars. This has also resulted in fewer people coming into the field, because there's no interest in a field with little innovation and multiple constraints.
Absolutely, we need to change attitudes toward the wheelchair itself--it is seen as symbolic of the person's disabled status, rather than the "freedom machine" that it is. Many years ago, I had a client request an evaluation for a wheelchair. She was ambulatory with crutches, but not functional in many household or community activities with them. She was so happy when she got her chair, and could go shopping, and ride the bus, and do her own home chores. The people in her support agency (!) said it was such a shame she started using a wheelchair. The bias that walking is best is very strong.
The more we are forced by inadequate funding to provide only minimally functional equipment, the more that perception is reinforced. People using poorly designed equipment *are* disabled, and prevented from participating in many professional and social occupations. Our insurance system reinforces dependency, and requires families to provide care free of charge, care that in many cases could be eased or eliminated with an appropriate and comprehensive seating and mobility system.
Every time the media use phrases like "confined to a wheelchair" or "wheelchair-bound," I cringe. My friends know I will correct their usage. But first, they will ask me about the cool new stair-climbing wheelchair they saw on the news.
The wheelchair is not shameful. Leaving people hidden away at home to languish without meaningful purpose in their lives--that is what is truly shameful.

Submitted by Maricar Rayos (not verified) on

Many poor people who cannot afford a decent wheelchair are most likely to suffer more injuries. I think giving the person the appropriate wheelchair for their daily use is more suitable and helpful. Research on wheelchair, cushions and seating systems are really very important to meet the client's comfort and ease of mobility to accomplish his/her daily activities.

Submitted by Peg Graham (not verified) on

Totally agree with the need to increase R&D support for mobility/transfer aids and devices. Please check out #Invent Health initiative emanating from Susannah Fox, HHS.

Also, consider the Workforce Innovation and Opportunity Act of 2014. (“WIOA,” Pub. L. 113-128. That act calls for research, development, demonstrations, training, dissemination, and related activities, including international activities, to maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities, especially individuals with the most severe disabilities, and improve the effectiveness of services authorized under the Rehabilitation Act of 1973, 29 U.S.C. 701 et seq.

I commented on that proposed legiaslation, asking that the regulations include research on the physical care needs of the growing elderly who, as they age at home, face increasing dependence on durable medical equipment to perform activities of daily living.

There is larger mobility issue that includes your work, but also extends to transfer capacity to/from wheelchairs for those who may not have complex needs, but need better design all the same.

Please check out www.facebook.com/The PPAL as an example of the way that improved design can improve the caregiving experience for many wheelchair users, not just about the wheelchair themselves, but about all the other transfer interfaces that occur day in/day out.

Submitted by gianantonio spa... (not verified) on

Sharon, how do people supporting “exclusive” research on robotics respond to your argument – a solid one, in my opinion? Do they believe there is the need for massive funding in order to promote a fast rise in usability of those technologies? What else?

Submitted by Sharon (not verified) on

I am actually not sure how the supporters of "exclusive" research on robotics would respond - but if there are any out there I'd like to hear from them. In fact, I've been trying to put together a debate on this topic for the RESNA annual conference this summer, but such a debate will depend on finding the right supporters to argue for the side of robotics. I'm working on it!

Submitted by Peg Graham (not verified) on

Would ask that the process of getting on./off a wheelchair also be included as an area that needs more research. Just listened to a webinar sponsored by the National Council on Aging featuring experts on the issues confronting "adults aging with disability." One observation of particular interest to me and my family: "Falls in SCI are often associated with transfers- from wheelchair to bed, from wheelchair to commode." See: https://www.ncoa.org/resources/webinar-falls-prevention-among-adults-agi... For information on a self-lift&transfer bedside commode, see http://goo.gl/j0iJ44. For insights into the need to address the overall physical demands on both wheelchair users and their caregivers, see: https://www.linkedin.com/pulse/competitive-advantage-keeping-patients-in....

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