Reporter’s Notebook: Learning Too Late

When it comes to disability etiquette, I was a lousy role model.

My brother-in-law, John Costa, struggled most of his life with schizophrenia. He was a groomsman at my wedding 36 years ago at The Bird & Bottle Inn in Philipstown. But John scared the hell out of me with his brooding look and his tendency to lecture on topics that didn’t make much sense. 

I couldn’t see past his disability. So I avoided him. 

I thought about John on Dec. 6 while attending the eighth annual Dutchess County Think Differently Conference at the FDR Presidential Library in Hyde Park. The topic was disability etiquette, and the lineup of speakers provided a primer.

The takeaway: Treat people with disabilities like people, not like people with disabilities. To do otherwise makes them feel like “the other.”

“I do not consider myself disabled or handicapped or whatever word,” explained Shadei Williams, who lives in Fishkill. She has cerebral palsy and was one of five participants in a morning panel. “We all find a way to do the same things, whether in a wheelchair, walking or teaching ourselves how to do things. We’re still getting the job done. It might take a little bit more time. But to label us like we’re not people, that’s where the hurt comes.”

The recommendation is to use “person-first” language. Instead of saying someone is “disabled,” say she is “a person with a disability,” “a person with limb loss” or “a person who uses a wheelchair.” Avoid outdated and hurtful words such as crippled, lame, handicapped, crazy or retarded, which the moderator referred to as “The R word.”

Etiquette is also about being respectful. Never touch someone’s wheelchair or guide dog unless invited. Identify yourself for people who are blind. When serving as a sighted guide, offer your arm rather than grabbing and pushing.

And give people space. “Don’t assume that they’re dependent or need help,” said Lisa Tarricone, executive director of Taconic Resources for Independence, which advocates for civil rights for people with disabilities in Dutchess County, including Beacon. Tarricone, who uses a wheelchair, has been out shopping and had strangers grab packages from her lap and insist on taking them to her car, “as if I can’t do it myself,” she said. 

When dealing with people who are disabled, she said, “the best practice is not to look at them as the other. They’re just like you. They just move differently. Somebody with a speech impediment speaks a little more slowly. You know, they’re just different, that’s it.”

Disability Etiquette: A Starting Guide

MOBILITY DISABILITIES
■ Do not touch a person’s mobility equipment.
■ During physical contact, be considerate of possible pain, balance or post-traumatic stress concerns.
■ Select a location where you can converse comfortably that reduces distance between you.

DEAF OR HARD OF HEARING
■ Get the person’s attention before starting a conversation.
■ If the individual uses a sign-language interpreter, speak directly to the person, not the interpreter; keep your eyes on the individual.
■ Speak in normal tones.

BLIND OR LOW VISION
■ Identify yourself when starting a conversation and announce when you leave.
■ When acting as a guide, offer your arm or shoulder rather than grabbing or pushing the person. Describe the setting, environment, written material and obstacles.
■ Resist the temptation to pet or talk to a service animal.

SPEECH DISABILITIES
■ If you do not understand what the person is saying, ask the person to repeat what they said and repeat it back to ensure you understood.
■ Do not speak for the person or attempt to finish sentences.

Source: DisabilityIN.org

My kids got that. They saw past John’s disability and just approached him as an uncle. Benjamin, my oldest, who is a software engineer, talked programming languages with John, who was a math and science standout at Spackenkill High School in Poughkeepsie. 

My second child, Elliott, would talk to John about dogs and cars, especially self-driving technology. Annie, my youngest, would discuss what John had for lunch and where he went on his daily walks. To her mild annoyance and amusement, John often urged her to take more rigorous courses at Tulane. They all thought it was funny and endearing that their uncle took detailed notes so he could remember what was said for the next conversation.

I stopped treating John as the other when my wife and I moved from Atlanta to Cold Spring in 2020 to be closer to him. After their parents died, my wife moved John into the Parents Foundation group home in New Haven, Connecticut, and we visited him each month. 

We usually ate at Yorkside Pizza, near his group home. We always went to Ashley’s Ice Cream, where he ordered a cup of chocolate-chocolate chip. We discussed our lives, reviewed his Scrabble results and bonded over Wilson, our pointy-eared mutt who came along. John loved Wilson. 

When John died suddenly in August 2023, at age 64, I couldn’t stop crying. 

We held a memorial at his group home. We talked about his love of Britney Spears and his constant reminders to the home’s attendants, cooks and social workers to drive safely. I learned that, every Christmas, he dressed up as Santa to hand out presents.

As for his disability? It didn’t come up.