Sermon: Growing Up in the Handicapped Zone – Anne Gross

On a beautiful fall day in September 1927, my mother, just two years old, contracted polio. Paralyzed from the waist down, she never walked unaided again.

At a time when handicapped bathrooms didn’t exist, and most children with polio were hidden in back rooms, my mother was remarkable:

She was a professional harpsichord player, whom you just heard, who recorded with Igor Stravinsky and performed at Carnegie chamber hall. She married and raised two children.

Growing up, my parents never uttered a word about my mother’s paralysis or the history behind it. If I asked, my mother turned away. The unspoken rule was clear:

We were not to talk about it.

My parents believed that if my father could help my mother navigate the world of the nondisabled, really, what was there to talk about?

Silence was the language of our family. But silence had a cost for all of us.

I witnessed my mother’s frustration when her electric wheelchair, heavy and difficult to navigate, scraped the wall, her resentment when my father went off to play tennis, something she could never do.

And when my father suggested a restaurant with steep stairs, she couldn’t tell him she didn’t want to go, knowing how ashamed she’d feel being carried up the stairs, the eyes of others upon her.

As a child, I internalized my mother’s unspoken feelings.

I felt her sadness, even when she wouldn’t name it.

I felt bad that I could walk and she couldn’t.

And when she whispered in my ear, “Don’t go,” as I leaned over her wheelchair to kiss her goodbye to visit a friend, I absorbed her separation anxiety. For years there were times I just couldn’t leave her.

Growing up, I was as emotionally disabled as my mother was physically disabled.

I too felt different.

At school dismissal, mothers stood in clusters chatting, waiting for their children.

Off to the side, in her starched white uniform, stood the family maid.

I’d rush toward her, as if speed could make us both unseen.

And when I pushed my mother in her wheelchair in public, I felt the relentless stares of others, hoping none of my classmates would see us.

Unable to share my feelings with my mother, soon my differentness turned into a shameful belief that all of me was bad.

After my mother’s death forty years ago, my father honored her wishes and sent me journals she had written toward the end of her life—pages and pages of words she could never say aloud.

Reading them changed everything.

I learned her silence wasn’t hers. It was inherited.

At the time, society blamed the “dirty” lifestyle of immigrants—especially Jewish immigrants like my grandparents—for bringing the virus into our country.

My grandparents internalized society’s view of themselves, believing they were somehow to blame for their daughter’s disability.

They hid their pain by forbidding any mention of her disability, and pushed her to excel, to prove she was as good as anyone else. She wrote in her journals:

“I spent a lifetime declaring: World -out-there: I am not worthless, I am not pitiable, I am not one of society’s abominations. I am intelligent, I am an achiever. I can make it with the best of you. I insist on making it the best of you. I need to every day, to validate myself.”

She also wrote:

“My message was, become extraordinary in order to make up for what you really are—an awkward ugly cripple, wanting always to be accepted as I was.”

The secrecy surrounding her disability only increased the very shame it was meant to eradicate. She wrote:

“The pain of the days, the struggles to keep going in a world of well people, the shame of my deformity, the ugliness of my body, which became an all-pervasive feeling that made all of me seem ugly and awkward.”

I realized her silence wasn’t a choice—it was the only means she could feel accepted. It was survival.

The shame that had now passed from my grandparents to my mother, and then to me—all came from the belief that difference is something to hide.

Growing up, I knew from the signed photograph and letter from our former president Franklin Roosevelt—which my mother proudly displayed—that she spent much time as a child at Warm Springs, Georgia, the polio rehabilitation center founded by our former President, himself paralyzed by polio.

Surrounded by others like her, my mother found what she had been denied everywhere else—true belonging.

She wrote:

“Warm Springs was the only place in my youth—in my whole lifetime—when I lived in a community comprised of others whose limbs were crippled like mine. It was the one remembered time when I did not demand of myself that I act ‘as if I didn’t have polio.’”

The therapeutic mineral pools had magical powers for people like my mother. The buoyancy offset the pull of gravity, allowing for freedom of motion impossible elsewhere. Swimming in the water, her body came alive. She wrote:

“A glorious feeling of mastery, of being in full charge of my body which responded magically, miraculously to every motion I wanted to make. Above the water, under the water, in the air as I went flying from a sitting position on a diving board into my wondrous water world.”

Every day, along with other patients, my mother headed to the walking court—where she learned to walk in her braces and canes. Patients practiced on four progressively difficult surfaces: concrete, grass, gravel, and stairs.

According to a 1932 Warm Springs newsletter, patients were taught to “move quietly and steadily without needless body, leg, or arm motions which would attract attention to the disability."

I obtained my mother’s Warm Springs records, which included this picture of her in her braces and canes. Because her back was also weakened by the polio virus, she wore a corset—all this to take one step.

But it was her friendship with FDR that left the deepest mark. She met him in the therapeutic pools, where he greeted her, and all the patients, with genuine care and interest. Unlike others who often retreated from her, FDR showed no discomfort in her presence. She wrote:

“Here was a man who felt not a hint of self-consciousness about his impairment.”

His ease and confidence lifted her own. Soon she believed the power resided in her to hide her awkwardness—in order to gain the acceptance she needed. Like FDR, she hid her own self-consciousness and deflected curiosity about her impairment by focusing on the needs of others. And when he cheered her on at a swim meet—

“Come on, Carol, you can do it. Keep on trying, I know you can.”

—that moment stayed with her. His faith in her abilities sparked her own fierce determination to achieve.

As my mother aged, she developed post-polio syndrome—fatigue and weakness that appears decades after the initial illness.

She returned to Warm Springs one last time to undergo treatment. By then, Warm Springs had expanded to serve people with many disabilities. Sitting in the cafeteria among people using wheelchairs, crutches, and leg braces, she had a revelation. She wrote:

“By striving to be just like everybody else, I had spent a lifetime turning my back on my disability. It was a futile and exhausting choice. And in doing so, I had lost a part of myself and had no chance of ever being whole. That lunch hour I saw the beginning of a genuinely experienced new self-definition—a woman, a wife, a mother, a professional person, and a human being with a considerable disability. It hurt, and it was an enormous relief.”

She continued:

“I had in that cafeteria my first powerful clue about why I had returned and what I was looking for.”

It wasn’t solely to receive treatment, which unfortunately proved unsuccessful. It was true acceptance—something she hadn’t experienced since her last visit over four decades earlier.
That longing to truly belong inspired my mother to help others. In her fifties, she made an about-face: she became an outspoken advocate for people with disabilities. She wrote:

“Low self-worth among people like me comes from internalizing society’s negative perceptions. These perceptions are our first battleground, and we must combat them.”

This became my mother’s focus: as only when society changes its views can not only people with a disability, but everyone who has ever felt ‘other’—because of a disability, skin color, identity, or whom they love—can truly feel they belong.”

Here are things we can do to keep my mother’s message alive: Never assume we know how it feels to be marginalized, or what others need.

Help one another speak proudly by listening—truly listening—and believing what people tell us about their lives.

Challenge casual jokes, quiet dismissals, and words that make people feel small. Realize that accessibility is not only about ramps or parking spots—it’s about being seen and valued.

It’s about saying, “You belong here, exactly as you are.”

Recognize that inclusion goes hand in hand with the power of being among those like us.

If you’d like to learn more about my family’s story, I invite you to read my award-winning book The Polio Journals: Lessons from My Mother. I am very grateful that many people here today have read my book, including everyone in my small spiritual group.

I leave you with one final thought:

When we acknowledge that worth and dignity are not earned, but inherent, we make it possible for all of us to stand taller, to speak our truth without fear, and to take our place in the diversity and beauty of humanity—without shame.

Title: The Polio Journals: Lessons from My Mother
Author: Anne K. Gross, Ph. D.
Published: January 20, 2011
ISBN: 9780578065915 (ISBN10: 0578065916)

 

Book Description: Part memoir, part social commentary, The Polio Journals tells the story of Carol Rosenstiel, who contracted the disease in 1927 at the age of two, leaving her permanently paralyzed from the waist down. In the 1920s, society viewed polio as a shameful reflection of the dirty lifestyle of its victims, leading Carol's parents to silence all issues related to their daughter's disability. Pushed by her parents to be exceptional in order to make up for her impairment, Carol became a successful musician, married, and raised two children. Prior to her death in 1985, she broke her silence and poured out her memories in a series of diaries. The Polio Journals explores Carol's inspiring life, probes the changing cultural landscape that impacted her lifelong quest to be accepted by others, and examines the havoc wreaked on families by silencing that which causes shame.

Anne Gross

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