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ROLL A MILE IN
THEIR WHEELCHAIRS

Journal of Healing – Oct. 5, 2005

By Mary Koch

When I was a teen-ager, my parents somehow found the wherewithal to buy a second car. Neither car was new, and the family joke was that we had two cars so there’d be one to push the other.

My husband is fortunate to own two wheelchairs. There’s the big power chair with high-tech instrumentation that he drives, and then there’s the back-up, the low-tech manual chair that I push. Both are more than 11 years old now and replacement parts – even tires – are hard to find.

A few weeks back I wrote about our difficulty getting the power chair replaced. A Medicare official in Nashville, Tenn., determined that my totally paralyzed husband has “no medical need for a power wheelchair.” That decision has been appealed, and we continue to tweak the old chair to keep it running until the Medicare wheels have ground to a conclusion.

I appreciated the many sympathetic comments we received following that column. Of course, there’s sympathy and then there’s empathy. When we sympathize, we feel bad or express sorrow for other people. When we empathize, as the saying goes, we walk a mile in the other person’s shoes.

* * *

WE’VE BEEN awash in waves of sympathy for the victims of Katrina and Rita. But it wasn’t until I heard a story on National Public Radio about another caregiver that I felt empathy. The story was about a tenacious woman named Carmen Vidaurre, who was refusing to allow her 24-year-old son Joseph to be evacuated without his wheelchair.

Joseph has muscular dystrophy, and the description of his power wheelchair sounded very similar to the chair my husband uses. While Joseph weighs less than 80 pounds, put him in that chair and the total is many hundreds of pounds. Too much weight, officials at Louis Armstrong International Airport told Carmen, for the evacuation planes.

Carmen was adamant. It’d had taken months to get that chair from Medicaid. Joseph was helpless without it, not to mention the special cushioning that prevents skin deterioration. Actually, the motor wasn’t even working. Flood waters had risen over the wheels and put the electrical system out of commission.

For weeks I wondered what happened to Carmen and Joseph. Then the NPR folks, bless them, ran a follow-up story. After five days in the airport, during which Joseph’s health deteriorated dangerously, mother and son were finally evacuated by ambulance to Baton Rouge. Their family caught up with them there and they’re now in New Jersey, where a technician fixed the wheelchair.

* * *

OTHER wheelchair users, faced with that terrible choice in the airport terminal, left their equipment behind. There’s a list of abandoned power chairs, scooters and manual chairs on the Louisiana Assistive Technology Access Network (LATAN) web page (www.latan.org). The list touches my heart, because I know that every piece of equipment represents a disabled individual who is marooned.

Much has been said and shown about the racial inequity and poverty that was laid bare by Katrina. The third, less publicized vector in this tragedy, were the disabled, says Curt Decker, executive director of the National Disability Rights Network.

People with disability were either left behind or forced to leave behind vital technology. LATAN is trying to replace communication devices, adapted computers, walkers, canes, hospital beds, even hearing aids. If you’re still looking for a place to send a donation – or you want to make another – the address is Hurricane Katrina & Rita Fund, P.O. Box 14115, Baton Rouge, LA 70898.

Putting our money where our sympathy lies moves us a step closer to empathy.

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