Bits and pieces of his life are preserved temporarily in my own memory as half of the childless aunt-uncle team who laughed like Santa Claus, brought nice presents and couldn't quite wrap his mind around the fact that I had grown up and begun a family of my own.
The last time I saw him, he was a confused, dear old man who was lost in his own world, who "remembered" every so often in pseudo-lucidity that I and two "nice little girls," my daughters, were in the room.
As is characteristic of the disease, Uncle Bob was prone to wandering -- both physically and mentally -- in lands known only to him. He depended on my then 70-year-old aunt for personal daily care, without knowing that she was tending his needs. He grew to be a war hero, a hard worker, a family and civic model -- and ended as a man who rarely recognized siblings or familiar touchstones of his own life.
Alzheimer's is just one (and probably the one most debilitating) of a collection of disabilities that are cognitive or intellectual in nature.
As our population ages and technology advances, young and old Americans with cognitive disabilities are growing in numbers, too.
Babies with Down syndrome, who once lived abbreviated lives in isolation, are now growing and thriving as adults. Children with autism, who would once have been institutionalized, are now receiving medical and therapeutic treatment to cope in our sometimes chaotic environments. Students who once were dismissed as stupid or lazy are getting help in many educational settings for what are instead differences in learning styles and attention.
In many ways, we can congratulate ourselves as a culture for the progress made in integrating people with intellectual disabilities, finding accommodations to improve their quality of life and simply valuing them as people among us. We see people with developmental disabilities holding jobs, participating in civic organizations, doing ordinary things like going to movies or baseball games.
We can laugh with and at the situations wrought by an intellectual disability in a movie like The Ringer, and we feel good about ourselves when we read about a little boy with a developmental disability who turns out to be a valued player on his soccer team or a high school senior with autism who, when put in the last basketball game of the season as a bit of charity by his coach, wows his team, his school and the nation with his unprecedented play.
But when I hear a colleague, an otherwise delightful and generous person, saying repeatedly whenever she makes a mistake, "I must be retarded," it makes me shudder. It's a small thing, you say, but words convey attitudes, and we all know that the attitude weighing heavily in such a word is anything but positive. As the mom of a little girl with Down syndrome once wrote to me, "The problem with 'retarded' is that it has two definitions, a clinical one and a derogatory one, with a thin thread between the two."
There were words my Uncle Bob used all his life that we no longer hear. They were words used casually to refer to certain human beings in ways that were belittling, insulting, mean. There was "the N word" for African-Americans and some other mercifully almost never heard, negative racial epithets. There were words I can only categorize as "icky" that referenced women. It took time, but women and racial minorities have pretty much managed to hit the delete keys on negative labels, and now can usually expect to be written and spoken about in terms that convey dignity.
Our words convey our attitudes, and our attitudes can be enlightened by our words.
If you want to do something good for people with disabilities -- something that won't cost you any money or even time -- watch your language. And teach your coworkers, friends, and kids to do the same.
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