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Wade Hall 703 Cass Irvin from Home Bound: Growing Up with a Disability in America Cass Irvin is a Louisville quadriplegic who uses a wheelchair. Her brave struggles for access and fair treatment are detailed in her inspiring autobiography, Home Bound (2004). The passage below shows how the tables are turned when, disabled though she is, she is able to help her father at the end of his life. The moral? At some point in life, everyone becomes disabled. h In the summer of 1991, Daddy got pneumonia, and I knew when he left the hospital he was going to need more help. I called three nurses I knew from my NOW chapter and learned everything I could about his condition and what he could expect. One nurse taught me all about sleep apnea; she wanted him to be in her sleep apnea program in Louisville. He wouldn’t go. Another friend suggested a breathing clinic in Bowling Green. He would not do that either. The one thing I could do was get him home health services. When Daddy left the hospital, he was on oxygen; from home health services, he was eligible for a nurse once a week and home health aides three times a week. He accepted the help more willingly when he found out he did not have to pay for it. He, like my mother, did not mind people working for him. It was hard on him to be “helpless”; he preferred to think he could still do it all. I remember how I was treated whenever I have approached the medical community : I become a “helpless cripple” incapable of knowing what is right for me, because of either their attitude or my intimidation. I become a patient. “Patient” connotes a person unable to speak on his or her own behalf. A patient fears not so much lifestyle change as a loss of self. The fear is justified. People who preach cure play into this belief. Everyone will not be cured, but everyone can use personal assistance. Having home aides was good for Daddy’s ego. He was an interesting character, colorful, worldly, and intelligent. He was a good conversationalist and admired for his experiences. People loved talking to him and often asked his advice on everything from sex to gardening. He lectured several nurses 703 704 The Kentucky Anthology about planning for their financial futures. Everyone, of course, thought he was handsome. He enjoyed the visits and the help, although he griped about not being able to do things for himself. He felt he did not need a bath three times a week, because he was not working hard enough to build up a sweat, so he especially griped during the showers. Sometimes he joked with his female aides that it would be fun if they joined him. One day, in a particularly grumpy mood, Daddy muttered through the whole shower. Since he had a new aide that day, John tried to explain that Daddy did not like the state he was in. Her response was, “Mel, you don’t like Kentucky?” Daddy looked at John and just rolled his eyes. He also griped that in thirty days the agency had sent nineteen different aides. Poor planning, he complained. “If the aide has never been here before, they get lost,” he complained. “They stop and call me for directions. All that wastes time and gas and wear and tear on their car.” I was more concerned that no single person was seeing him on a regular basis. How could anyone mark a change in his condition? Since John and I went to his home often, we met many of his aides. Even though they were capable help, it was hard for me to leave Daddy and go back to Louisville. Usually it would be late afternoon, the sun beginning to go down—a beautiful, melancholy time of day. One sunny afternoon I sat on the screened porch talking with Daddy while John loaded the van. Daddy was in his usual place on the porch, in a chair near the back corner, near the deck overlooking the lake. While we talked, I watched hummingbirds come to the feeders hanging from the deck behind his shoulder. Daddy would complain and then apologize—“I’m not telling you something you don’t already know.” I was shocked to hear him apologize. He was not used to being “helpless” and did not know what to expect. It was the...

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