Helping those we love overcome obstacles. Disability and independence — depending on the severity of the disability, some would say that’s an oxymoron — two words used together which contradict each other. Some believe it’s impossible for a disabled person to be independent. And others accept the challenge. Judy Babbitt (program manager, San Antonio Disability Access Office) told me about her own experience when we renewed our acquaintance last week. She had poliomyelitis when she was 6 years old. Polio is almost nonexistent now, except for the deficits we see in some who had it in the 1940s and ‘50s. She talked about a long convalescence in a hospital that was meant for adults. She was separated from her family for a full year, a true emotional trauma for one so young, in addition to the trauma that accompanied her sudden change in abilities. The family came to visit twice a week during that year. The physical changes were the focus of attention. At home, therapy in the form of stretching exercises on the floor every day continued. They were very painful. She was building the unaffected muscles to take over for the ones that were damaged by the polio virus. Meanwhile, there was emotional trauma for her siblings as well. Younger than she, they took second place as Judy was the primary focus of attention. The goal was to help her be as independent as possible post-polio. She had to learn what she could do the same as before, what she had to modify in order to do, and what she had to give up.
Judy went back to public school with her siblings. At first, there was a stigma surrounding her. Parents feared their children would catch the disease. Some older folks will remember, along with me, the steps that were taken during this pandemic to prevent contagion. Swimming pools and movie theaters were closed; even schools were closed to protect children from exposure, and wisely so. However, after the virus spent itself in the body, Judy was no longer contagious. Judy’s parents both encouraged her. She especially remembers her father’s efforts to help her do what she could do. He told her, “You have to figure out how to do it before you go.” She also learned the hard way that she had to figure out how to get down if she got up. She was expected to do her full share of chores in the household. She told me a story about wanting to get out of doing the dishes one night. In typical child-like fashion, she told her dad she felt too bad. He said she had to do the dishes anyway. She said she wouldn’t. He said he would spank her. She said, “You wouldn’t spank me, I’m a cripple.” He spanked her. She did the dishes. While I don’t believe in corporal punishment because I think it teaches the wrong lessons — but that’s another article — I think her dad did the right thing. He spanked the other children, so spanking her was appropriate. He cut the victim status thing off at the pass, so to speak. More importantly, she thinks he did the right thing. She says, “Every kid needs responsibilities in the household.”
Another very important aspect of her rehabilitation was a horse. Her grandfather helped her with that one. He would buy her a horse if she could come up with half of the money, he told her. She did so by digging angleworms at a penny a worm to earn her $25 half of the cost of the horse. The horse helped her save her independent perspective, she says. On the horse, she was like any other kid on a horse. She learned, she says, “I have a difference; I’m not different from others.” This attitude and Judy’s life make the politically correct term “differentlyabled” make sense. Judy grew from those first life “reconstruction” phases of her polio experience to complete her education, volunteer in the American Peace Corps and complete her master’s degree in city planning. Her skills and experiences are now applied in the City of San Antonio as the Americans With Disabilities Act compliance focal point. Judy expresses daily, in action and words, that independence is a state of mind and not a function of one’s physical or mental impairment. A similar perspective on independence and can-do attitude comes from Kyle Maynard. He is a congenital amputee. He was born with arms that stop at the elbow and shortened legs. He did not hold back from anything. He participated in football in the sixth, seventh and eighth grades, and later, when the bulk of the other players was so much greater than his, he shifted to a one-on-one sport. He participated in a high school wrestling team. He was a champion in every sense of the word. I recommend his memoir, No Excuses, about his life experiences, especially for sports enthusiasts.
Kyle focuses on his family’s support of him in the first few chapters. His dad took on the mission, he says, of helping him avoid the dependence trap. When Kyle was quite young, his father demanded the family quit feeding him so he would be forced to learn to feed himself with the prosthetic spoon he had. In going out for sports, his dad, he says, was a dreamer along with him. He helped him figure out how to do things differently, whether with accommodations or techniques. His mother kept his feet on the ground. She was the one who saw things more realistically and worked to teach him that there was success in whatever he did, whether he won or not. Grandma Betty taught him to face people who were staring at him and say, “Hi, I’m Kyle.” He writes, “I’ve learned that I should be the one to take the initiative and disarm people — no pun intended — if they have any fear about approaching me.” His coaches supported him in many ways and helped him learn how to work around his disabilities, as well. A summary statement of this young man’s life view follows: Whenever I’ve faced adversity, I’ve used that challenge as motivation to win through, no matter the cost. When I meet with failure, I pick myself up, dust off the dirt from the fall and focus on trying again. You can’t let failure beat you or give in to the temptation to take the easy way out. The world’s greatest accomplishments are not achieved on the first try.
Using these inspiring stories as a backdrop, I have come up with these guidelines for families who want to help one of their own accept the independence challenge:
1. If you decide to supplement financially, do only what you can realistically afford. Remember, for example, that if you decide to provide an automobile, there will be additional expenses associated with the vehicle that your disabled loved one may not be able to afford — insurance, gasoline, maintenance, etc. Too often, I hear tales of parents’ subsidizing something only to berate the person later for “just take, take, take, never give.” It would be far better to help her/him learn to use the bus or other available transportation than to add to their feelings of shame and guilt for being different and dependent.
2. Rather than doing for the person, help her/him figure out how to work around the disability and do for self. Remember that when we do too much for someone, we often end up resenting him or her (and just as frequently, they resent us.)
3. Many disabling conditions and injuries were caused by the individual’s own excessively risk-taking behaviors: driving while intoxicated, smoking, reckless driving, etc. Refrain from judgmental comments. Your family member, no doubt, has punished himself enough. Do not add to that punishment. Instead, be a facilitator, and help her/him move forward into independence.
4. If your own emotional state interferes with taking this “tough love”/ no excuses approach, in a nonjudgmental, nonpunitive way, get help for yourself.
My oldest daughter had a stroke at age 31. She was left with several deficits, including aphasia and short-term memory problems. When I visited her in her rehab site for the first time, she was struggling with the aphasia. I would supply the words she couldn’t come up with. She said, “Please, I want to find my own words.” A good lesson for us all. Give help when it’s asked for and no more than is needed.
By ROSEMARY J. STAUBER