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Paul Nelson
Tonawanda
After 28 years of being a caregiver for four different family members, there is one question that remains with me from all four experiences.
I am still a full-time caregiver for my autistic son. He's taught me patience and how to live moment by moment. My late wife was psychotic and bedridden. She was addicted to opiates and became a full-time hoarder. I went through two bankruptcies, but learned that money is not nearly as vital as most people think. Caring for my parents was simpler and taught me to value every moment we have.
My unanswered question is, Why do so many people see those who are struggling as "bad or problematic people?"
Whether it's the homeless, the mentally or physically challenged, or seniors, many people, even if appearing to be kind, have a genuine distaste for those who are challenged. They want these misfits to just disappear. We cross the street to avoid them. We give them a few bucks so we can feel better, but we don't want them around us, and we usually don't commit to helping them in any way. Why? What makes us feel this way? Why do we have such tiny comfort zones?
I was the same way when I was younger. Then, I was blessed with a severely autistic son. Everything changed. My view of life became much broader. I saw things I'd never noticed before. I began to feel empathy on a grand scale through the challenges my son faced.
This culminated when it became necessary to place him in special education. It was tough. I wanted my son to be "normal" and have an independent life. I was forced to do what was best for my son, not what made me feel best. Being a teacher, I was also assigned to teach the special needs kids' music. It was always a challenge to find ways to reach them. However, it was also frequently the best part of my day.
In spite of their challenges, I saw tremendous joy at the simplest of accomplishments. Their disabilities vanished when they listened to music. Severely disabled kids in wheelchairs who could barely move, sprouted huge smiles when I simply put headphones on them and played music, or when I moved their wheelchair gently to the beat of music. My view of society changed forever. It was like I was outside the big life aquarium watching and observing, and the views were not always pleasant.
I think fear of commitment is perhaps our greatest challenge in life. We prefer to stay just outside the crux of problems, rather than making a commitment to actually do something about them. That approach is safe and comfortable.
Caregiving demands that we come face to face with situations most people would think of as a curse. Many times, I've heard young parents of autistic kids say their family has been cursed. I believe this is a sure way to have a miserable life. Yes, there are situations where parents have a child who seems to be impossible to care for due to fits, hitting, biting, and self-harm. I truly feel for these parents; however, so many times, the problem is that their child isn't able to get the services or medication that is needed. The global health community has only just begun to address mental health.
The prevailing attitude is often still, "If it doesn't show on the outside, it's not a disability. It's stupidity, laziness or drug addiction."
I was at my son's day program the other day for a meeting. I looked behind the receptionist's desk, who is also disabled. There was a simple little framed quote.
"One person with commitment is worth over a hundred with just an interest." -- Mary Crowley
I think that will be my guiding wisdom for the rest of my life. Life isn't for the timid. It involves participation and making positive change happen, even if it's inch by inch. To sum up, we're the bad guys when we sit and watch and don't get dirt under our nails. We're the bad guys when we assume a homeless person is just lazy and probably a drug addict. Many times, I've seen people I knew quite well duck down an aisle in a store to avoid contact with my autistic son and I. I've encountered hatred for my son on social media frequently. Recently, on Facebook, my son and I were called, "grandpa pedophile and his retard kid." This was someone I didn't even know.
Fear and insecurity are the greatest driving forces behind the hatred we see in the United States right now. Anybody with brown skin, an accent, a different sexual preference, someone who is homeless and even seniors with significant health problems are now viewed by far too many people as disposable. The easiest approach is to remain in that tiny insecure comfort zone and run away from the problem -- all this from people who constantly claim to be Christians. Interestingly, they regularly quote the Old Testament in their social media posts, but never the teachings of Christ, which preach loving everyone.
Just like growing up and leaving the comfort of home, situations that push our limits create great personal and spiritual growth. Too often the problem is a strong desire to say, "Okay, I'm good enough. I don't need to learn anymore." We should try to learn until the day we die.