Seeing with the Clarity of a Child

Along with soccer, bananas and “Zoom,” two New York kids grow up learning disability culture and service

by Anthony Ragona on November 1, 2005 - 10:06am

QUEST Vol. 12, No. 6

Recently, I’ve come to realize the impact our children have on us. My daughters, soon to be 5 and 2 years old, have enriched my life in immeasurable ways. Sofia, our younger child, is a happy, inquisitive toddler who loves silly hats, bananas and Elmo. Isabella teaches me something every day.

Anthony Ragona with his wife and two daughters
Anthony Ragona with his wife Christina and their two daughters, Isabella (left) and Sofia.

Like many parents, my wife Christina and I always read Isabella a bedtime story. Lately, we’ve taken to playing a game we call My Favorite Things. Some of her favorite things are making art projects, soccer and the PBS children’s television show “Zoom.”

Watching Isabella think and then express her thoughts is something that will stay with me forever. Sometimes she explodes with an enthusiastic answer. The more often we play the game, the more she needs to contemplate her answer. Her ability to do so makes me realize that she’s becoming more aware of the world around her.

After Isabella names her favorite things, she names some of her favorite people. The list is pretty long and I’m proud to announce that I rank #2. Mom rules in our house!

One of Isabella’s favorite people is her Uncle Chris. The impact he’s had on her can’t be quantified. Whether she’s riding on the back of his wheelchair, riding her bike with him or tickling his feet, I know she’ll grow to become a smarter, more independent person because of Chris’ influence.

Isabella doesn’t realize the vast scope of that influence. As a member of the Muscular Dystrophy Association’s Board of Directors as well as in his position as the University Director for Student Affairs for the City University of New York, Chris Rosa lives a life of service I hope both my children will one day emulate.

Chris has been this way since I’ve known him. Over the last 10 years, I’ve had the pleasure of being with Chris in a variety of settings with a vast array of people. To me, he’s a real-life Ferris Bueller.

For those of you who don’t recall (or aren’t children of the 1980s) in “Ferris Bueller’s Day Off,” Matthew Broderick played the title character, a high school student who manages to maintain a mass appeal with all those he encounters, regardless of superficial differences.

I realized this upon first meeting Chris in 1995. Christina and I had just begun dating and we attended a student event at Queens College in which Chris was involved. As we walked over to the campus, it struck me that, although I knew Chris was disabled and used a wheelchair, I really hadn’t given it much thought.

Do I shake his hand?

What if he can’t?

I was momentarily perplexed by the most common salutation between men.

How can I relate to him?

I stopped myself…. My mind quickly recalled the Al Pacino film “Scent of a Woman.” You may remember that Pacino portrayed a blind war veteran. There’s a scene in which he vociferously admonishes an overly solicitous helper for grabbing his arm rather than letting Pacino take the arm of the assistant.

I thought to myself, “Don’t be that guy!

I had nothing to worry about. Chris spotted us as we entered the student center and came right over. Within five minutes we hit it off and discovered a mutual passion for the New York Mets. In the fullness of time, my concerns seem silly now.

Chris has written about disability culture as a set of cultural lenses which result in a unique way of seeing the world. Chris, as well as the rest of Christina’s family, have accepted me into this culture. Unlike myself, Isabella and Sofia have been a part of the culture since birth. To them, a wheelchair will never be a symbol of limitations. It will always remind them of their uncles Chris and Gian, and I know they’ll grow to be better people because of this.

Chris Rosa, his brother Gian Rosa, and niece Isabella Ragona
Chris Rosa, his brother Gian Rosa, and niece Isabella Ragona

In testifying before the Labor, Health & Human Services Subcommittee of the U.S. Senate Appropriations Committee in 2001, Chris said:

I feel that I am uniquely qualified to comment upon the concerns of American families affected by the muscular dystrophies because in 1976, the lives of members of my family were forever changed by my diagnosis of Becker muscular dystrophy… However, over the past three decades, thanks to the work of the Muscular Dystrophy Association, the prospects for people with muscular dystrophy have improved dramatically…

Chris was among a trio of speakers, including MDA National Chairman Jerry Lewis and the Chairman of MDA’s Medical Advisory Committee, Dr. Leon Charash, who spoke before the committee. They were able to secure the allocation of additional federal funds for muscular dystrophy research.

Isabella can’t quite appreciate the significance of this accomplishment or his service on MDA’s Board of Directors and its National Task Force on Public Awareness. But she still remembers getting her “secret message” from Uncle Chris when she saw him on television.

For several years, Chris has made a presentation during the MDA Labor Day Telethon. Prior to leaving New York for the Telethon broadcast last year, Chris told Isabella to watch him on television and he’d give her a thumbs-up, a secret message just for her. Isabella was ecstatic when she saw Uncle Chris give her their secret message.

Isabella gives Chris something, too. He wrote in MDA’s Quest magazine:

“Of all the esteemed scholars and profound thinkers who have shaped my thinking and understanding of disability culture, Isabella has been the most influential… Disability culture is an important part of the tools Isabella is acquiring for understanding the world around her.

“Isabella brings me hope that, increasingly, people aren’t ‘looking past’ our wheelchairs, aren’t looking past our disabilities. Rather, they’re increasingly seeing ‘the real us’ people for whom disability is an integral, usual, indeed even essential part of who we are.”

As my young children grow, life will try to slowly inhibit the clarity with which they view the world. But I’m truly blessed to have a unique family. Because of this I know my daughters will always view people for who they are rather than by what they see.

Anthony Ragona is a 15-year veteran of the New York City Police Department. He lives in Long Island, N.Y., with his wife, Christina Rosa-Ragona, and their daughters, Isabella and Sofia. Christina’s brothers, Christopher and Gian, both have Becker muscular dystrophy.

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