“Disability is natural. We must stop believing that disabilities keep a person from doing something. Because that’s not true – having a disability doesn’t stop me from doing anything.” Benjamin Snow, director of the award-winning short film, Thumbs Down to Pity.
Some of the best ideas come to me when I’m in the shower. Maybe it’s because the water washes away the tensions of the day, allowing me to think random thoughts. This morning, my mind wandered back to my school days. I loved learning (with the exception of any subject remotely related to math) and worked hard to earn excellent grades. I was a model student, however, other kids taunted and teased me. Due to cerebral palsy (CP), I walked with what many describe as a limp. The type of CP I have is called spastic diplegia, which means only the lower extremities are affected. At five years old, I had orthopedic surgery (Achilles tendon lengthening), which enabled me to walk. I am fully ambulatory.
It’s fair to say that dealing with a disability is not easy. In addition to living with CP, I am also a caregiver for my mom who has Alzheimer’s Disease, which is definitely disabling. I’ve been spending the past week taking care of Mom. What is even more disturbing than her disease? The insensitive, stupid remarks made by friends and neighbors. Here are a few examples:
Mom (to a friend) – “They say I have Alzheimer’s.”
Friend (to Mom) – “That’s not good.”
Mom (to me) – “Tell her what I have.”
Me (to a neighbor, somewhat reluctantly) – “She has Alzheimer’s.”
Neighbor #1 (to Mom) – “You don’t look like it.”
Neighbor #2 (to neighbor #1) – “It’s in the early stages.” Pure speculation.
Mom (to a friend who used to be a nun) – “I’m never alone. My kids take turns staying with me.”
Friend – “It would be better if you were in a nursing home.” This woman
continued with this train of thought, even after my mom said, “Oh, no, I don’t want to go to a home.”
Excuse me? When did it become acceptable to say these things to an Alzheimer’s patient? I firmly believe that perhaps people would not say these things if Mom had a different disability/disease OR they actually knew anything about Alzheimer’s and how to deal with people who have it. The Disability is Natural homepage, created by Kathie Snow (Benjamin’s mom), asks: “Isn’t it time for some common sense, new ways of thinking, and good news about disability issues?”