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I had just finished watching the recent documentary on John Callahan, Touch Me Someplace I Can Feel, when word came my way that yet another reporter was looking to put out a deceptive, sensational article on how power wheelchairs are so overpriced. And, I thought to myself, Reporters like this have blood on their hands when it comes to the death of many like John Callahan, where such reporters' ignorance toward disability, humanity, and economics continues to contribute to the literal dehumanizing of those with severe disabilities. And, many consumers and those within the mobility industry often simply add fuel to the fire with their own ignorance on the subject, one that's burning the lives of many with severe disabilities to the ground.

When I learned of John's death, just a day or two after his July 24, 2010 passing, my first thought was, Damn, not again. See, John – noted cartoonist, author, and musician – died at age 59, due to complications from his third major pressure sore. In the last 20 years, remarkable strides have been made toward pressure sore prevention, where deaths like John's are remarkably avoidable – but only with the right technology, which requires the right funding. And, John, like most, struggled to obtain funding for the right technology – joining the ranks of others who have ultimately died as a result of not having access to the right mobility equipment.

The pressure sores that John experienced are medically called “decubitus ulcers,” and commonly referred to as “bedsores.” The human body isn't capable of sustaining pressure on any one spot for any length of time – and certainly not in the buttocks region. When seated, up to 80% of our body weight is concentrated on the buttocks, and even more alarming is that it isn't evenly distributed, concentrating on the two areas of our tail bone and cheeks – and often on even smaller areas than that, called “pressure points.” In my own case, due to deformed posture, most of my weight is concentrated on the left side of my buttocks, on a point the size of a quarter, placing me, like John, at among the highest risk for a pressure sore. See, when an able-body person feels seated pressure, he or she shifts his or her weight, or simply stands up – this is why you see passengers pacing on long airline flights. However, for those with severe disabilities like John's paralysis or my cerebral palsy, we can't readily shift our weight, stationary in the degradation of our skin and tissue – and pressure sores occur. It's at this point that our lives literally become in danger.

A pressure sore starts as a discoloration on the surface of the skin (called a Stage I), and culminates into an infected wound with a depth to the bone (called a Stage IV) – a literal hole through one's tissue, to the bone, open and raw. For wheelchair users who receive a buttocks pressure sore, it not only eliminates one's ability to sit upright, often requiring an entire year in bed, but also causes overall illness as the body tries to fight the infection, and demands a complex surgery to “close” the wound – requiring, again, a year of recovery at best, where an estimated 60% of patients never recover, including John, who passed away awaiting his third “skin flap closure” surgery. The Medicare cost of one pressure sore surgery, itself, is around $90,000, with an average total bill of $400,000 per patient in related long-term health care.

Yet, reporters in the media never question why pressure sores occur in the first place, nor do they know that the result is a $400,000 bill to taxpayers at best, or that the death of the patient occurs at worst. Instead, what reporters publish are headlines like, “The Case of the $5,000 Wheelchair Seat,” that leave average readers and viewers freaking out that Medicare is wasting money in such ways. After all, who needs a $5,000 wheelchair seat, right?

John Callahan, me, and countless others with severe disabilities, that's who – that is, if we wish to stay healthy, productive, and alive. See, that “$5,000 wheelchair seat” is actually a medically-needed power tilt seat, one that shifts the weight off of our buttocks when we can't. At the touch of a button, the entire seat tilts back 55-degrees, removing weight from the buttocks, dramatically reducing or eliminating the risk of life-threatening pressure sores.

Now, $5,000 may seem like a lot of money to some, but let's use what we've just discussed about pressure sores, and put wheelchair costs into true fiscal perspective: A $5,000 tilt seating system – designed to last at least 5 years, made of exceptionally complex, customized components, meeting FDA-regulations (like all wheelchairs) – dramatically contributes to the prevention of pressure sores. It keeps one out of bed, so one can continue work; it prevents infection and illness; it prevents an average of $400,000 in medical bills; and, most importantly, it prevents deaths. If I said to you that for $5,000, we can keep you mobile, guarantee your health, prevent $400,000 in medical bills, and save your life, you'd see that as a remarkable investment, wouldn't you? And, that's exactly what it is – an invaluable investment in a fellow human, while saving taxpayers a literal fortune. Clearly, then, funding technology like a power wheelchair's tilt seating system is by far the wisest, most ethical, most economically-sound investments that we can make as a society for those with severe disabilities in need. It's a win for everyone.

The same ethical and economic truths holds true for wheelchairs overall. Yes, wheelchairs can seem costly, with the average rehab manual wheelchair costing $2,000, and the average complex rehab power wheelchair with tilt seating costing $11,000 in total. However, again, what's the real human and economic return on that investment – and, more aptly, what's the toll if it's not made?

We partially learned the answer through John Callahan's death. Despite his notoriety and success, he wasn't a wealthy man, earning around a teacher's salary from royalties, struggling to fund his own attendant care and mobility. Throughout the 1990s, he desperately needed a power wheelchair with a tilt seating system to prevent pressure sores, but he didn't qualify for public funding, though he should have. It wasn't until just prior to his death, that John received a new power wheelchair with tilt seating, far too late to spare his health, suffering, and productivity – and, ultimately, his life.

John and I shared a mutual colleague in the magazine business, Tim Gilmer, and Tim described John's deteriorated quality of life with haunting accuracy:

When I met [John] late in his life, in January 2007, there was snow on the ground. I opened the door to his apartment and found him in bed. The room was dark, stuffy, small. I felt instantly claustrophobic. A writer from Willamette Week, Beth Slovic, had just done a piece on him entitled, 'Tales From the Crip.' It seemed like an apt title."

John's last years demonstrated the catastrophe that happens to those of us in need of vital mobility technology who don't receive it: Our lives locked away, productivity voided, taxpayer fortunes spent, and death looms in the air.

Despite the thousands of situations like John's, it's disturbing how many consumers and individuals within the mobility industry alike still don't understand – and can't explain – the true value of a wheelchair in one's life. Consumers who rely on wheelchairs still ask why they cost so much, and when presented with the question, many in the mobility industry run the other way, refusing to answer it. How can both sides of the fence be so ignorant toward such an obvious answer, and if they're too clueless to understand the mobility-to-life equation, how is there to be any hope toward changing the funding system for the better, or even merely educating a small-town newspaper reporter on the subject? There's no rocket science or hyperbole to this subject – just compassion and fiscal common sense. You can spend $11,000 on a needed power wheelchair, and create a healthy taxpayer in the long term, or spend $400,000 watching someone die – it's a straight-forward decision. And, it's that very decision that everyone who asks why wheelchairs cost so much should have to answer:  Do you want to spend $11,000 on a needed weight-shifting power wheelchair, and create a healthy taxpayer in the long term, or spend $400,000 watching that individual die – it's your call, boss.

I suspect that everyone's ignorance on this life-and-death subject comes down to an inability to empathize with others, to see the value in those with severe disabilities. Indeed, when we put the value of life above all else, recognizing the reason why wheelchairs cost as they do demands a paradigm shift from the uneducated toward the truly logical: Wheelchairs aren't a financial burden; rather, they are an economic savior – for example, they are an initial $11,000 expenditure to prevent a $400,000 health care bill to taxpayers. The proper mobility technology doesn't just liberate lives; rather, it saves lives – it prevents someone from becoming ill to the point of no recovery. And, the proper mobility technology takes individuals from being “on the system,” to contributing to the system through employment and community service.

Therefore, when we hear reporters and consumers asking why wheelchairs cost so much, and we see individuals in the mobility industry unable to answer the question, where legislators aren't given the true reasons why they shouldn't cut funding again and again, we need to ask ourselves how do people not understand the simple math that if we invest a little in an individual via a wheelchair, we get an exponential return on the investment as a society and toward the health care system? It goes back to the age-old adage that, when it comes to wheelchairs, spending a little saves a lot – not just in dollars and cents, but in lives.

To the reporters and consumers who ask why wheelchairs cost so much – and to those in the mobility industry who refuse to answer the question – I leave them all with a closing answer: Anyone who asks such an absurd question is truly questioning the value of life, itself, with no awareness toward the humanity of those with disabilities or escalating health care costs. Wheelchairs save lives and save money, keeping those with severe disabilities healthy and productive, where if we invest in a wheelchair for someone in need, we're investing in all of our futures, socially and economically. And, anyone who still thinks that wheelchairs cost too much certainly has never sat next to the bedside of someone like John Callahan, or attended such an individual's memorial service.

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Published 9/2010, Copyright 2010,