I know many people and have many connections. However, few know anything about my personal/private/home life. They know nothing of how my life is once I leave campus, work, or Shreveport/Bossier in general.
At the end of each day I migrate south to Stonewall, Louisiana where I live with my parents, both in their 60’s, my aunt, 4 cats, a dog, and two fish.
My aunt is the focus of this post.
She is 59 years old and has never walked, spoken clearly, or done anything at all for herself in her entire life. She has Cerebral Palsy.
When she was an infant in 1957, she was unknowingly exposed to the whooping cough which then developed in her tiny defenseless body and wreaked havoc, altering the course of her life drastically and permanently.
Her name is Vicki.
She is cared for pristinely by myself and my mother, and is bedridden to a nice hospital bed though we take initiative quite often and move her to a recliner at least three times a week to prevent bed sores.
Her arms, hands, and legs are drawn and ache often from arthritis. She has seizures routinely which terrifies my mother every time. She’s been having seizures several times a month for decades now and each time my mother has a panic attack.
My father works from early morning to late evening or goes fishing from 3am until dark so he isn’t here too much and when he is, he’s sleeping. So he doesn’t see these things very often.
I don’t seem to have that panic switch that most people have in high pressure, intense situations, so that’s a key factor in my house. My aunt can’t do anything for herself, so my mother cares for her during the day; feeding her breakfast, lunch, and dinner.
Vicki has a great appreciation for old country music. When I say old I mean Merle Haggard, Hank Williams Sr., Jim Reeves, Porter Wagoner, etc. So everyday she listens to her stereo and sings and laughs and endures the everyday battle that mental retardation entails.
She has never left this house to drive to a fast food restaurant to order a greasy hamburger. She’s never even eaten a hamburger. Her teeth were removed years ago due to the frequency of her seizures and the danger that came with her having teeth that could clamp down on her tongue without her control. This has severely limited her meal choices.
Everything is beans or noodles or soft things that have been mashed thoroughly.
She leaves this house once every six months to go to her doctor to get medication refills. So once every six months, I set aside half a day to work with my mother to load Vicki’s wheelchair into the bed of one of our trucks, carry Vicki from her bedroom in the back of the house out to the vehicle, buckle her in and drive to the doctor’s office.
I wheel Vicki into the open waiting room and my mother is usually right behind us, and each and every time I am absolutely astonished by the reactions from 50-80 year olds in the room. People who seem to have no sense of decency, that stare and gawk and whisper.
Excuse me. But this is a 90% coherent person who can see and hear a blurry figure sitting across from her whispering about her.
Don’t get me wrong, I understand not being familiar with things and being curious about things. But as a caretaker, I (and I’m sure every other caretaker in the universe) would rather have you come out and ask us the questions that you have rather than rudely whisper about the creature in front of you.
Quick PSA: Be a decent human. If you see someone with autism or cerebral palsy or down syndrome or any kind of disability, don’t be cruel. They may be different from you, but they’re essentially built the same. There is a brain in their head and they come equipped with eyes and ears and a heart and feelings. Try and remember that they are most likely made fun of at some point in each day of their lives. Don’t be that person in their day. Just smile. Be understanding. You won’t catch what they have. But honestly, in my experience with “normal” people and people with disabilities, I always always always notice one thing. I have never in all of my life seen a disabled person be cruel to a normal person.
Not one single fucking time.