My first patient of the day slid across the floor, unable to use his legs. My instinct was to help him, but he propped himself up onto the chair next to me more easily than most people would sit down on one. The chair was plastic, similar to the kind you buy at Walmart on sale for $10. It rested on the concrete floor of the nicest building in town—a church.
I was a long way from South Carolina.
I had traveled 9,000 miles to spend time with Victor in a small village on the western side of Uganda. I learned that he had come to our clinic to get a new pair of crutches. His last set had broken a few years earlier, and since then he had been improvising. Victor was 42, and had lived in the area his entire life. Unable to use his legs since the age of 2 because of polio, he got around on a bicycle with hand pedals. He asked if I could look at his legs since they had been hurting more than usual.
To get some privacy, he slid across the floor behind me to a small room with a dirt floor that had been cordoned off for pelvic exams. The room contained a wooden table and chair. Without giving me a chance to assist him, he vaulted onto the table and took off his shirt and trousers to be examined. From the waist up, he was ripped. If you bounced a quarter off his stomach, it would hit you in the eye. His legs, however, were emaciated and contracted. One knee had a little swelling, but otherwise there was nothing to treat.
During the examination, I asked if he was employed.
“Yes, I am a carpenter.”
“A carpenter? Could you make the table you are sitting on?”
“Can you make that chair?”
“Yes. But mostly I do roofing.”
“Roofing? How can you do that?”
“Well, I go up on the roof, and I slide around to do the work.”
With the exam over, he got dressed, hopped off the table, and followed me to our physical therapists to get crutches. Because of his contracted legs, it took some time to alter a pair so that they worked for him. But a few hours later, he quietly moved toward the door of the church using one of his legs to balance himself as he “walked.” Everyone in the building stopped what he was doing. Two hundred volunteers, patients, health care providers, and translators turned to watch him. A beautiful, wide smile spread across his face. We all began clapping and cheering, and Victor became the symbol for every tough Ugandan we saw that week.
This story had greater significance for me. When Victor told me that he worked despite his overwhelming disability, I began thinking about what his life would be in like in the United States. It does not take a lot of effort to imagine him as morbidly obese with diabetes, sacral decubiti, and dependent on opioids. Our culture is awash with the complications of good intentions. Over my three decades in medicine, I have witnessed the move from what's best for the patient to what's best for business. “The customer is always right” has led us down the path of antimicrobial resistance and a devastating epidemic of narcotic addiction. For most EPs, going to work means hoping there will not be too many encounters with people seeking to marinate their sadness in the chemical morass only we can provide.
The cultural implications of how we got to this point are complicated to understand, and it's a difficult problem to solve. But somehow health care providers have lost the ability just to say no (or “I don't know”) without being assaulted by yelling and threats. But the more important point is that we are hurting our patients through the unintended consequences of our kindness. Victor must endure tough love by the nature of his environment. He simply does not have a choice, and he will either thrive or perish. But for many of our patients, the ability to choose creates the potential for catastrophic failure. They simply end up shopping for the answer they want, not necessarily for what is the best for them or society.
I am not implying that disabled people need to suck it up. Our society has been incredibly effective at assisting these individuals, and there are many success stories that would not have been possible without support. Victor is an exceptional person in a perilous situation. Nonetheless, the next generation of EPs will live and work in an environment beholden to customer service, and the challenge they face is to balance providing too much and not enough for patients.
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