A child lost, a community evolved

Living with disability, yesterday and today

A child lost photo image
Marcia Kalman, circa 1938.

The baby was born after a long, grueling labor, and emerged with the umbilical cord wrapped around her neck. Few expected the tiny infant to survive. But she did.

Marcia Kalman was a beautiful child, with cornflower blue eyes, light brown curls, and dimples in her cheeks and hands. She couldn't speak, but she was quick to laugh -- and she was the apple of her parents' eye.

Her father, Al, rigged a harness to hold Marcia's limp limbs in place, allowing her to sit upright in a chair. Sonya, her mother, spent untold hours caring for her daughter as the years went by, painstakingly massaging her throat to help the little girl swallow food.

But as Marcia grew, it became harder for her parents to manage. Just 5 feet tall, Sonya had an increasingly difficult time lifting Marcia. With all the energy they devoted to their firstborn, Sonya and Al had little time to attend to her younger sister, Joanie, let alone have time to themselves.

Finally, the extended family intervened. Joanie was failing to thrive, they said; she was nearly 5 years old and did not yet speak. It was time, they said, to put Marcia in a home. Sonya and Al felt they had no choice.

A few months after she was placed in the institution, my Aunt Marcia died at age 8.

My grandparents never, ever got over the loss.

When I was a young adult, I asked my grandparents to tell me more about Marcia. My grandfather left the room, but my grandmother smiled. She told me Marcia had had such a sunny personality and wonderful sense of humor; how she often giggled as my grandmother joked through their daily routine.

Gently I asked how, exactly, she had died.

"They said she died of pneumonia," Sonya said. "But that's not true. I killed her. I broke her heart."

My grandmother's words haunt me.

Little wonder that she was not the most affectionate grandparent or parent. What a labyrinth of emotions she must have felt towards her surviving child, and upon the birth of her third daughter, Marjorie, who arrived several years after Marcia's death and was named for her older sister.

I imagine how all of their lives would have been different, had Marcia lived.

Were she born today, I believe Marcia would have survived -- and even thrived. Beyond the medical advances and technology that would have helped manage her cerebral palsy, Marcia and my family would have been supported by life-transforming services provided by JUF's partner agencies.

From Jewish Child & Family Services (JCFS), Marcia would have gotten physical therapy, occupational therapy, and speech therapy through the Integrated Pediatric Interventions program -- and the JCFS Legal Advocacy program would have helped ensure Marcia got the appropriate public school education.

Through Keshet, she could have participated in inclusive sports, buddy programs, and other recreational opportunities that would have given her a sense of community. She could have gone to an inclusive JCC summer camp, a partnership between Keshet and JCC Chicago.

As she grew to adulthood, JUF's Encompass program would have helped Marcia access supports for housing, community involvement, and meaningful volunteer work or employment.

Perhaps most important of all -- especially during those early years -- a couple of hours a week, Marcia would have been cared for through JCFS Respite Services, giving her parents a chance to recharge their emotional batteries. Her little sisters would have participated in a siblings group to help process their own needs. And the entire family would have had counseling.

Were she born today, I believe our JUF network of partner agencies would have helped save Marcia's life -- and our entire family history would have been rewritten.

As we mark Disabilities Awareness Month, in October, I grieve for my family, which had a crisis 75 years too early to receive the help they needed -- but rejoice in the possibilities for today's families, as our Chicago Jewish community continues to make strides in embracing people of all abilities.  




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