Wheelchair Industry: Quality Absent

I opted out of dealing with wheelchair companies 25 years ago. This was an easy decision to make. Manual wheelchairs as most readers are likely to know are costly--easily exceeding $3,000. What does one get for this money? Not much. I think the vast majority of wheelchairs manufactured today are poorly designed and contain inferior parts, especially things you do not see like wheel bearings. No mass produced wheelchair can withstand the rigors of every day use. Worse yet, the services wheelchair companies provide is laughable. Durable medical equipment vendors provide dismal service at best. Do not believe a word RESNA, Rehabilitative Engineering and Assistive Technology Society of America, states about so called seating specialists. There is a shocking lack of competent people who can help consumers pick out an appropriate wheelchair. To be fair, I would include specialists in rehabilitation such as occupational and physical therapists among those that do not possess adequate knowledge. Getting the right wheelchair is extremely difficult. Mistakes are costly and here I am not just referring to the financial implications. An inappropriate wheelchair can result in a myriad of health related problems. Specialists can be found--most likely at larger rehab centers but I have never found one myself. I will acknowledge some people are well versed in wheelchair technology and have the experience of working with an array of people that need a wheelchair. Sadly, most people who have a spinal cord injury do not have access to these professionals. Adding to the problem is the fact the sort of comprehensive long-term rehab I experienced in the late 1970s is a thing of the past. Sure wheelchair technology and medical care have undergone a revolution since I was in rehab but there are disturbing aspects to the wheelchair industry and modern day rehab. Frankly, most people leaving rehab centers today are grossly unprepared to care for their bodies and the social response to their newly disabled bodies.

These thoughts have been coursing through my brain after reading a wonderful article in Sports N Spokes: "Chair Shake-Up" by Rory A Cooper and Rosemarie Cooper. This is a highly unusual article for the magazine to publish. It is filled with insightful observations and contains a social critique. Do not misunderstand my comment as a cheap shot at Sports N Spokes—it remains the best magazine published about adaptive sports. What separated this article from others is the critique of the wheelchair industry. This critique takes place at a critical juncture in time: the demise of high-end wheelchairs. This is an alarming phenomenon even if it does not directly affect me.

In 2010 Invacare and Sunrise Medical, the biggest manufacturers in the business, each stopped producing most of their titanium wheelchairs. They now make a plethora of crappy, i.e. cheap, wheelchairs that can be bought at a discount on line at sites such as SpinLife.com. The dearth of high-end wheelchairs however is symbolic of a larger problem--people who use a wheelchair are simply not valued. By high-end wheelchair I am referring to a wheelchair that is lightweight and tough--one designed to last a decade or more under rigorous everyday use. The rigorous use I am thinking involves extremes of weather and terrain as well the ability to absorb the abuse dished out by airlines and the constant assembly and disassembly required to get in and out of the car. Such a wheelchair has high quality wheels, rims, hubs, and a top-notch paint job (powder coating). Most mass produced wheelchairs will crumble under such use.

How do I test a wheelchair? I take the frame and throw it out a third or fourth story window. If the frame survives it is good to go. I sincerely doubt any wheelchair made by the mega conglomerate Sunrise Medical can withstand my quality test. This is a huge problem. What I wonder does a young male or female 20 years old with a spinal cord injury do? We guys, and yes gals, who use wheelchairs our entire life depend upon our wheelchairs. When they stop we stop. By extension, this has me wondering how do newly paralyzed people learn to cope with a spinal cord injury? When I was injured I learned far more from my paralyzed peers than I ever did from the doctors, nurses, and therapists charged with my care and supposed rehabilitation. Hence when I went to college fresh out of rehab the best education I got in terms of how to cope with the real world came from my peers.

Paralyzed people today do not get much time in rehabilitation. When I was paralyzed rehab stints of 6-9 months were common. Today, if you are lucky you get three weeks. No one in the olden days was sent home until they had their own wheelchair. When that wheelchair arrived it was a glorious day! Today, people are routinely sent home with a loaner wheelchair, a total piece of junk. They struggle as a result. The vast majority end up back in the hospital. Is this progress? Well no. This is done at the behest of insurance companies and affects not just people with spinal cord injury but a host of people foremost among them the elderly. I can only conclude our existence is not deemed important. You get a few weeks of rehab and if you do not progress it is off to the nursing home. Indeed, the average age for people admitted to nursing homes is now dropping. And who ends up there? People with spinal cord injuries. Do they get proper rehab? Not a chance. They are warehoused and unlikely to ever emerge from the institution they are sent to.

I mourn for my newly crippled peers. They are not given a fighting chance to succeed. In fact, they are set up to fail. How can a newly paralyzed person succeed with a crappy loaner wheelchair and three weeks of rehab? How can they learn how to manage their bodies without talking to those that learned to adapt long ago? The answer is they cannot. I learned how to manage my bladder and bowels by talking to other paralyzed guys. I did not learn one practical thing in the hospital. What I found in the hospital and subsequently in college was camaraderie. I learned much from peers and we were part of the pre ADA generation that had no civil rights and in its absence railed against prejudice. Not all of us succeeded but we all had a fair chance. That is all I want for paralyzed people today—a chance, a legitimate chance.

The only way paralyzed people can function is with top-notch wheelchairs. I was very lucky in that I was paralyzed at a time when wheelchair innovation was actually taking place. The monopoly that Everest & Jennings enjoyed for decades was broken in the late 1970s. For the first time in history paralyzed people were given a real choice when it came to wheelchairs. From this void emerged rigid frame wheelchairs that dominate the market to this day. What I am waiting and hoping for is another such revolution in choices. I do not see that happening though. Instead the wheelchair market is taking a giant step backward—pun intended. Wheelchairs are not designed for rigorous use but to the dictates of insurance carriers. Those insurance carriers do not care one iota about the quality of life of people that use wheelchairs. I care and am very sad. I figured a way around the practical problems of inferior designs and lousy service. My solution though is a solution for one—me. This bothers me for I worry. How do my paralyzed peers can function when restricted by insurance carriers and a lack of top quality choice? This is an issue that must be addressed at the highest levels of industry and government. We paralyzed people need access to not only quality wheelchairs but also technological innovations. Without it we are doomed to fail. I for one do not accept this reality.