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There but for the grace of God ...

There but for the grace of God ...

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Nadia Torres was enjoying the June 2 performance of Disney's Beauty and the Beast at the Providence Performing Arts Center in Rhode Island. Like many 5 year olds, she was really into the dancing and singing magic onstage, so much so that she was laughing, squealing and humming along.

She was enjoying it so much that she and her mother, Samantha Torres, were told to leave. Theater management now says they were offered other seats, but Torres says they were not. They already were seated near the back of the 3,100-seat theater.

We've all been annoyed by people talking through movies or texting at a live theater performance. It can be distracting. As many of us would, some in the audience turned around and glowered at the little girl. They told her to hush, to be quiet.

But, you see, Nadia has a chromosome abnormality and can't speak. She communicated her joy through giggles and other sounds. I know others in the audience no doubt were annoyed by Nadia's enthusiasm, but surely they could have ignored the sounds and kept their attention on the stage. The theater staff could have done more to accommodate Nadia and her mother.

Perhaps I am more sensitive because of my brother Jack, my hero. When he was 8, Jack was bitten by a Georgia mosquito and developed polio. He was in a coma for six weeks and the doctors told my parents that he would never emerge from that state. He did. He had lost much of his memory and motor reflexes and the doctors told my parents he would be like that forever and should be placed in a facility that was better equipped to care for him. My parents said no and, when they could, they took him home.

Jack quickly regained his cognitive skills, but was confined to a wheelchair through much of his school years. He underwent numerous operations, including 54 on his right foot and ankle alone. He spent the better part of a year in a full body cast, living at the New York Rehabilitation Hospital across the Hudson River in West Haverstraw, N.Y. We got to see him on weekends. Eventually, Jack learned to walk again, first using crutches and later with a built-up right shoe and a distinct limp.

His senior year, Jack's class took a trip to Washington, D.C. When the students got to the Washington Monument, Jack and two buddies decided to climb the 897 steps to the top of the obelisk, the friends taking it slow and encouraging him the whole way. He did say they cheated and took the elevator down.

My mother remembered bringing Jack home to their house at Fort Benning, The houses were built on a circle, with the back yards forming a natural park. Mom would take Jack out and let him play as best he could. If he fell, she made him get up by himself, earning the wrath of the other mothers who thought she was so cruel; one of them reported her to the base provost for child cruelty. It deeply hurt Mom to make him struggle to get up. She said, "Of course I wanted to pick him up, as any mother would, but if I had I would have to help him all his life." In the end, she outlived him by more than five years.

As an adult, Jack loved to bowl, but couldn't take the required number of steps to the line. So, with the consent and understanding of his friends, he made his way to the line and threw the ball. Everyone was happy, everyone but the league bosses who dropped the team because my brother's "illegal" style. He still bowled and had a good time, just not in a league.

Through it all, Jack was the happiest person I ever have known. He never met a stranger, never let a conversation lag. He always had a story, always had a smile, even when the effects of polio wore him down later in life. He died four days after his 65th birthday in 2007 and I miss him still.

There was a time when children like Jack and those with developmental challenges were taken from their families and warehoused "for their own good." Fortunately, we have advanced beyond that and more families today deal with such children with love and care and, yes, a great deal of frustration at how unforgiving our society can be. Being a parent never is easy, but being a parent of a child with special needs is so much harder still.

Such families not only deal with worries about their child's often fragile health and concerns for their future, they also deal with a society that in too many cases begrudges any interaction with children -- and adults -- who are "different."

The federal government requires public buildings be handicapped accessible, but having pushed my mother in a wheelchair for the last decade of her life, I know that the understanding of that term is limited, at best. Every architect should be required to spend a week in a wheelchair before designing any building with handicapped accommodations. I suspect things would change if they did.

Things are getting better, step by painful step, but we have a long way to go. Years ago, I saw a marvelous production of the musical Big River in Houston. It was double-cast, with hearing and non-hearing actors in each role. The hearing actors would talk and sing their parts, shadowed by non-hearing actors who signed the role. It was an amazingly moving experience, one that everyone got to enjoy.

More recently, some theaters in New York have held special matinee performances for families with an autistic child, with flashing lights and loud sounds toned down. Beanbag chairs are provided for the children who feel more comfortable in them. From all reports, the performances have been quite successful and the families most appreciative.

Surely we could do more here. And surely, we could let the Nadia Torreses of this world enjoy life as they live it.

Life should be about living to the fullest extent of our abilities, whatever they are. We should live lives of can, not can't.

• Robert C. Borden is opinions editor of The Eagle. Email him at robert.borden@theeagle.com.

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