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The Spokesman-Review Newspaper
Spokane, Washington  Est. May 19, 1883

Determination leads the way to ‘Freedom’

Jamie Tobias Neely The Spokesman-Review

The film captures Susanna Sweeney-Martini’s first days as a freshman at the University of Washington. Tears stream down her face as she tells her mother goodbye in one scene. Laughter crinkles her eyes as she checks out the cute boy serving cafeteria pizza in another.

They were moments that her mother envisioned years ago, and it’s no surprise that they came true.

“I was raised (to think) there was no way in the world I wouldn’t go to college,” Sweeney-Martini says. “Mom always said, ‘You’re going to college, you’re going to graduate, you’re going to get a job.’ “

On Tuesday, the film, called “Freedom Machines,” will air on PBS throughout the country. It will appear on the series called P.O.V. on KSPS in Spokane at 10 p.m. It documents the lives of several people like Susanna, who rely on assistive technology to live out the dreams their mothers imagined early on.

Susanna was one of the youngest premature babies ever to survive at Sacred Heart Medical Center 20 years ago. She was born four months premature, with her eyes sealed shut like a puppy’s.

A lack of oxygen to her brain left her with a condition called athetoid cerebral palsy.

Over the years, her mother ignored the advice of experts. (She remembers one pediatric neurologist telling her: “I don’t know what you want. She should have been a miscarriage.”) Instead, Susan Sweeney hung a sign over her baby daughter’s crib that said, “Go for it!”

I met this mother-daughter pair when Susanna was 7. Susan was a special education teacher who had trained as a lawyer. She managed to take Susanna to Hungary for a program called conductive education, which helped her learn to sit, stand and walk.

Later, we talked again when Susanna, then 11, was invited to England to speak. She met Princess Diana.

Last week we sat in Susan’s living room in Spokane Valley as the two of them brought me up to date on their lives. Susanna is 20, still bright, articulate and romantic: She dreams of babies now, not flying unicorns.

She has beautiful long blond hair and her mother’s blue eyes. Her right arm and leg still occasionally float into the air like a moon-walker lacking gravity. A wheelchair helps her get to classes and voice-activated software helps her write papers.

She’s changed her major to communications, with a minor in disabilities studies. She plans a career helping other people with disabilities succeed.

She’s also fallen in love. She attended her first prom with a boy who was a senior at the Washington State School for the Blind, and she wears his promise ring.

As for Susan, life opened up after Susanna went to college. She was no longer her daughter’s primary caregiver. Her back stopped hurting.

She began to practice as a lawyer, along with her teaching, focusing on elder and disability law, and she began plotting to join her daughter’s work with Freedom Machines. It’s a national outreach campaign as well as a film title, promoting greater access to technology for people with disabilities. According to the filmmakers, statistics show that fewer than 25 percent of people with disabilities who could benefit from technology actually know about it and access it.

Over the years, Susan came to accept that, while Susanna had learned to walk, she couldn’t move at the pace culture requires. Susanna’s wheelchair would remain a necessity. She felt great pride, however, in bringing conductive education to the United States, where it has spread to 150 places throughout the country.

Listening to the two of them talk again, racing through topic after topic and completing one another’s sentences, I thought once more about Susan’s drive.

I remember wondering in the past whether she was fueled by an inner sense of denial or injustice. But I’ve come to think that she’s simply an extraordinarily energetic and articulate woman who is doing what comes naturally to most mothers.

She envisions a future for her daughter that is positive, loving and productive. She imagines a world that will recognize the gifts she sees in Susanna, and, like many mothers, the strength of her vision lies in its capacity to create the future.

It’s simply a more dramatic manifestation of what all kinds of mothers do for all kinds of children. This ferocious mother-love has often been mocked and distained in our culture. But it’s feared primarily because of its power.

In the film Susan talks about the difficulty of obtaining assistive technology from the public schools. “Where is the money and why isn’t it used here?” she asks. “Because they don’t think these people will be out voting. They don’t consider that Susanna is going to make a difference, but they’re really in for a big surprise.”

Susan’s gifts include the highly developed verbal skills required to express what most mothers have in their heart: My child is valuable. My child is special. My child will change the world.

Just you wait and see.

For more information about “Freedom Machines,” check out www.freedommachines.com.