November 30, 2008


The Neediest Cases
Cerebral Palsy Can't Restrain a Fiercely Independent Spirit


By GLENN COLLINS


Precisely and laboriously, hunting and pecking at a diminutive
keyboard that emitted a disembodied electronic voice, Susan Krause
was explaining how much her home has meant to her for 57 years, and
how glad she is to have escaped eviction.
Tap, tap, tap. Hunched in a wheelchair in her living room, she
searched the keyboard with her fingers and made a voice synthesizer
say: "It's a country place." She was referring to
Stuyvesant Town,
the 80-acre
Manhattan residential development that is the only home
she has ever known. More tapping: "But it's within a big city."
Her machine-made words, as they emerged every 20 seconds, revealed a
witty, irrepressible spirit in a body that must contort itself
heartbreakingly if Ms. Krause is to convey even a single thought. Her
intensity was such that she seemed to be tapping not just to talk,
but to live, t o liberate herself from the lifelong restrictions
imposed by cerebral palsy.
But wait, that otherworldly voice surely it was familiar? Didn't it
sound like Stephen Hawking?
"I find it hysterical that we use the same voice," Ms. Krause tapped
out. Dr. Hawking, the British cosmologist, uses a voice synthesizer
because he is paralyzed by amyotrophic lateral sclerosis.
Ms. Krause grinned; her whole body seemed to shape into a grin as
well. "I use a male voice," she tapped, "because the female voices on
the machine weren't as clear and understandable."
If she and Dr. Hawking shared a triumph of communication, Ms.
Krause's story has its own distinct red-brick cosmos, that of
Stuyvesant Town, a leafy sanctuary that made possible a life that
others with severe disabilities could only envy.
She remembered her childhood as "extremely happy," enfolded in the
indefatigable love and encouragement of her parents, William and
Aida, who died more than a decade ago. Ms. Krause recalled glorious
sunlit afternoons in the sheltering embrace of the playground
downstairs.
She welcomed public schooling, as well as occupational and speech
therapy, and studied for a year at
Long Island University. Through
the decades, by her presence, Ms. Krause became one of those there-
but-for-the-grace-of folks: a life lesson for her longtime neighbors,
who came to accept her as unexceptional. Her parents rejected
institu tionalizing Ms. Krause, and after their death, she fiercely
rebuffed all such attempts.
And so, for 28 years, she has braved city streets five days a week to
work from
8:30 a.m. to 4:30 p.m. at the offices of United Cerebral
Palsy on
23rd Street near Park Avenue South, wheeling to the corner
to wait for an Access-a-Ride van.
She works as a secretary and receptionist, and delivers orientation
lectures to new staff members. Though the paycheck is crucial to her
independence, she loves her job "because I like to be useful," she
said.
The eviction notice came from Tishman Speyer, which bought
Stuyvesant
Town
and Peter Cooper Village for $5.4 billion in 2006.
Ms. Krause, who had always worked and was confused by public-
assistance options, had fallen behind. The reason is shared by
millions of other aging disabled people: The careful plans of her
parents had foundered in financial reality. A legacy that paid more
than $60,000 a year for the home health aides that Ms. Krause
requires hit bottom in the spring. She became anguished as bills
mounted, along with fear of expulsion from her rent-stabilized
cocoon.
But an upstairs neighbor, Tom Bowler, a 72-year-old graphic designer,
rallied other tenants to support Ms. Krause and helped bring in
Catholic Charities Archdiocese of New York. "Knowing Susan has meant
more to me than words can express," he said.
Catholic Charities, one of the seven agenc ies supported by The New
York Times Neediest Cases Fund, used $1,317.16 from the fund to cover
a crucial rent check while a financial rescue plan to pay $5,055.65
in arrears was put in place.
"We would have been within the law to push harder," said George
Hatzmann, a manager director at Tishman Speyer, "but we gave her the
time she needed to get the money together. We're glad she's able to
remain in
Stuyvesant Town."
Now Ms. Krause, who needs seven-days-per-week care, has gotten
Medicaid to pay for her home aides.
And to help meet the rent, Mr.
Bowler went online to find Ms. Krause a roommate, who pays $660 a
month in the two-bedroom apartment.
Looking ahead, her hopes are decidedly modest: "To be as independent
as I can be, so I'm not a burden and can be of help to others," she
said. She hopes the landlord will make her bathroom wheelchair-
accessible. And she is looking for a part-time, at-home computer job.
"I just need to make some additional money," her affectless
synthesizer voice said. "I want and need to be treated like
everyone else."