Alzheimer's Disease

How does the entertainment industry include people with disabilities?

It’s been said that movies reflect life in a way that’s truer than any other art form.

If so, people with disabilities must be riding a crest of popularity.

Did you notice that both “Best Actor” and “Best Actress” in leading role awards at the recent Oscars were presented to movie stars portraying people with disabilities?

Eddie Redmayne was fabulous as the amazing Stephen Hawking in “The Theory of Everything.” Redmayne described himself as “the custodian” of the award for Hawking, his family, and all people around the world battling the neurodegenerative disease amyotrophic lateral sclerosis (ALS).

Julianne Moore was magnificent in “Still Alice,” a professor with early-onset Alzheimer’s disease who struggles to stay connected with who she was as her cognitive abilities evaporate. The movie is based on the best-selling novel by Lisa Genova.

Improving the entertainment experience for people with disabilities was also the focus of a campaign launched via commercial during the 2015 Oscars.

The first-ever national advertisement by cable-giant Comcast promoted the company’s new talking guide that reads titles and selections aloud to help people with visual impairments surf through TV listings, program digital video recordings and browse video-on-demand options.

The 60-second ad directed viewers to a short documentary online about a sooooo sweet seven-year-old girl, Emily, who has been blind since birth, but loves watching the movie “The Wizard of Oz” nonetheless. See emilysoz.com.

In the documentary, “Emily’s Oz,” the girl describes how she imagines characters in the story look, and a cast and crew working to create Emily’s vision for viewers with sight.

If you haven’t seen “Emily’s Oz,” please watch. You’ll find yourself celebrating the diversity in a shared human experience.

A minute’s worth of TV advertising during the Academy Awards usually costs about $4 million, but Comcast officials said it hoped to inspire a national conversation about improving access to entertainment for people with disabilities.

In addition to helping the blind, the talking guide could be easier for senior citizens and people with reading disabilities to use, they said.

Features that help people with disabilities tend to be applicable, and acceptable, to able-bodied users, too. That’s the beauty of universal design.

Comcast will also be rolling out a voice-controlled remote later this year.

Amazon.com’s cloud-based Fire TV streaming box also has a voice search option. DirecTV has a smartphone app that allows TV viewers to navigate its program guide by speaking.

Movies can be a powerful way to open eyes and change attitudes in popular culture. Evidence is the ReelAbilities Film and Arts Festivals, which are hosted by disability organizations in 15 cities nationwide, including Chicago, Cincinnati and Columbus. See http://www.reelabilities.org.

These festivals feature award-winning movies by and about people with disabilities. Don’t attend expecting to see Hollywood Blockbuster movies you can catch at a your local multiplex. The emphasis is on excellent independent films.

Let’s compile a list of good movies that fairly portray living with a chronic or age-related disability. (“Forrest Gump,” a terrific allegory, doesn’t really live up to the second requirement.)

We can add these movies to our watch lists on Amazon Prime and Netflix, or borrow them from the library.

Here are some favorites to get us started:

  • Children of a Lesser God (hearing)
  • Scent of a Woman (sight)
  • Soul Surfer (amputation)
  • I Am Sam (cognitive disability)
  • A Beautiful Mind (schizophrenia)
  • My Left Foot (cerebral palsy)
  • Rory O’Shea Was Here (cerebral palsy)
  • Iris (Alzheimer’s Disease)
  • Rain Man (autism spectrum)
  • Extremely Loud and Incredibly Close (autism spectrum)
  • The Curious Case of Benjamin Button (aging)
  • Robot and Frank (aging)

Add your favorites in the comments section. And, if you think “Forrest Gump” deserves to be on the list, say that, too.

Thoughts on First Person Language

 As a child, I concluded that intriguing people had disabilities.  

There was the mysterious hero of “To Kill a Mockingbird” Boo Radley – who probably was on the autistic spectrum, or maybe was just a recluse. I cheered the transformations of Clara (Heidi) and Colin (The Secret Garden), kid-invalids whose health and dispositions improved with friendship, sunlight and fresh air. And who didn’t adore Corky in the TV series “Life Goes On”?

Written by Kym Reinstadler

Written by Kym Reinstadler

Thinking back, I marvel that I grew up knowing very few real people who had disabilities.

Friends in the neighborhood had a big brother with brain damage – the result of falling down a flight of stairs in a walker when he was a baby – but I never saw Bobby because he lived in an institution. There was a girl named Heather in my junior high who used a walker because she had cerebral palsy, but I never had her in any classes. There was Becky in my high school biology class who sat front and center because she was deaf and needed to read our teacher’s lips. Becky’s voice sounded unusual when she answered questions, but it wouldn’t occur to me to look down on a classmate who always gets the right answer.

What I’m saying is that I knew of a few people with disabilities, but I didn’t really know them.

Back then I probably would have characterized Boo Radley, Corky and Bobby as “retarded” or “Down Syndrome,” never imagining they might consider the label derogatory. Clara, Colin and Heather were all “invalids” in my frame of reference. Becky reads lips, so that makes her deaf, right?

It wasn’t until 1988 -- when the director of a Disability Network-type of agency made a presentation to reporters and editors at the California newspaper where I was writing -- that I was introduced to the concept of person-first language.

The concept is pretty basic:

Name the person first and the condition second. Say "people with disabilities" rather than "disabled people” to emphasize that they are, first and foremost, people.

I could see her point, especially when she said referring to Ray Charles as “the great blind musician” was a sentence structure that minimized his talent.

Who doesn’t know that Ray Charles was a great musician? Whether he was also blind or had vision to see through walls is an unrelated attribute.

So, I embraced person-first language as disability etiquette. It’s become second nature, but it’s also tiresome because it throws speed bumps in writing.

Here’s why: Adjectives come before nouns in normal English syntax. Describing a wheezing person as “asthmatic” has an economy of words that “the person who has asthma” lacks.

Following the same linguistic prescription, should the mechanic be called “the person who repairs automobiles” and the artist be called “the person who makes art”?

Plus, not all disability groups like person-first language, including the deaf and the blind.

Since I didn’t view disabilities as derogatory, I didn’t feel the concern for person-first language issue until my Dad’s final trip to a hospital emergency room.

Alzheimer’s Disease had pretty much drained Dad from his body by then. He’d had a stroke. It had been more than a year since he walked, talked or recognized family members.

As my Mom and I sat with Dad in the ER, one doctor at the end of his shift walked briskly by with another doctor coming on duty. As they passed our cubicle, the only word uttered was “aphasic.”

Hearing someone sum up his whole 78 years of being with a label that means “can’t speak” stung. So, I got madder than a hornet’s nest.

“What about all the things he could do when he was still himself?” I thought.

I knew my Dad was going to die, if not that day, one day soon.  I wanted to savor his humanity, not have him dehumanized.

Did I complain to the medical staff?

No.

I knew the first doctor was just quickly passing along the most essential piece of information that the second would need to provide care. The patient didn’t speak. Questions could be addressed to his wife and daughter.

Even in his last days, Dad was more than “aphasic” to me. My friends with bipolar disorder are more than their mood swings. I have a friend who is a great writer, teacher and father, which is more important than the fact that he’s blind. I have a good friend who uses a wheelchair, but I’d list a dozen things about her before I’d remember the chair because it seems completely incidental to her.

Now that I’m grown up and know real people with disabilities, I understand why person-first language is more than good manners.

It’s telling it how it is.

Where do you stand on person-first language? Why?