Isabelle Charlotte Weinstein Goldenson
Isabelle Charlotte Weinstein Goldenson was honored by the Israel Cancer Research Fund as its "Woman of Action" on June 22, 2005. Goldenson's daughter, Loreen Arbus, accepted the award on her mother's behalf and delivered the following speech.
I am profoundly grateful to the Israel Cancer Research Fund for honoring my mother, Isabelle Charlotte Weinstein Goldenson, as a "Woman of Action." She would have been beyond grateful because, quite frankly, she never received "credit" during her lifetime for all that she accomplished. She was constantly eclipsed by my father's visibility (although he never sought recognition himself). Theirs was a partnership of sixty years. He was a business visionary; she was an eleemosynary visionary. He convinced the motion picture industry to produce television. She promulgated the idea of space-age technology to give the disabled life without limits. He literally saved near-bankrupt Walt Disney by providing the financing to build Disneyland. By raising money, she helped finance research for a vaccine against German measles. He put sports on primetime television. She initiated the concept of handicapped parking. He successfully fought a hostile takeover by Howard Hughes. She fought to end discrimination of the disabled. He mobilized his vast business connections to implement her "out-of-the-box" ideas.
My mother was very fortunate to have been born into a family of prestige and prominence. Besides being affluent, this family produced renowned musicians, painters, sculptors, the first Jewish Poet Laureate in the United States as well as the first Jewish architect to win the Prix de Rome. Her upbringing was reminiscent of characters from an Edith Wharton novel as she was schooled at home and learned the manners and rituals of the privileged class in New York City.
While pursued by the city's most eligible men, my mother's good instincts led her to accept my father's proposal of marriage although he came from a very modest, small-town background and his prospects seemed bleak at the height of the Great Depression.
But he had potential. A Harvard-trained lawyer, my dad was a rising young executive at Paramount Theatres, and soon became head. He bought and transformed, against all odds, five bankrupt TV stations into the nation's third television network, ABC. My parents eventually settled in New York's Westchester County.
A number of years later, my mother gave birth to her first child, my older sister, Genise—we called her "Cookie"... Soon afterwards, my grandmother said to her daughter, "Your baby isn't normal!" It became clear that her baby was not developing in the same way as all the babies of her friends. My mother was devastated. After consulting many specialists, my parents learned that their child had cerebral palsy which, at that time, was so utterly misunderstood that most doctors referred to the condition as just "spastic." Women (never the men) were wrongly branded with scarlet letters when they gave birth to a child with cerebral palsy. These mothers were ostracized because it was assumed that they had had a venereal disease which caused the birth defects. (My sister's condition resulted from my mother having contracted German Measles early in her pregnancy.)
My mother went into a deep depression. Until then, her life had been a fairy-tale existence but this cruel reality made her feel guilty, unworthy, and above all, angry. She was furious that there was so much ignorance about this condition, and although my parents were able to have full-time care for my sister, my mother was also frustrated and outraged by the fact that most families couldn't afford even the most basic rehabilitation programs, as limited as they were at the time.
Desperate for his wife to start functioning again, my father challenged her to raise the seed money to start an organization which would focus on obtaining money for research and enlightening the public on a condition that was shrouded in ignorance, embarrassment, and visually disturbing. She organized a dinner and auction which brought in $65,000 and for the first time since her child's birth, she acknowledged publicly that her daughter had cerebral palsy. My father raised an additional $35,000 from theatre owners, and the total $100,000 enabled them to co-found United Cerebral Palsy (UCP) which became the third largest health agency in the U.S., with more than 100 chapters across the country. Her mission became the mission of UCP: to provide the highest quality health care, education, employment, housing, and technology resources, allowing people with cerebral palsy to lead independent and productive lives. Later, my mother wanted to expand and include people with disabilities other than cerebral palsy—such as mental retardation, autism, learning disabilities, and other brain conditions which today constitute sixty percent of UCP's clients.
My mother had suddenly found her true calling: an "enabler for the disabled" and without missing a beat, she co-founded the UCP Education and Research Foundation which has funded the research leading to a vaccine against Rubella (German Measles); advances in the prevention of premature births and cerebral hemorrhage in infants—major causes of disabilities; phototherapy—placing infants under strong lights to treat jaundice and prevent brain damage; and the fetal heart monitor used by obstetricians and hospitals worldwide.
My mother was instrumental in UCP launching the very first national telethon which brought in over a million dollars in 1950. These annual telethons lasted for 46 years, featuring celebrities such as Bob Hope, Milton Berle, John Ritter, Henry Winkler, Leonard Bernstein and Beverly Sills.
While my father was building a media empire, utilizing his innovative ideas and great gut which gave ABC a record of "firsts" in television that has never been surpassed, my mother was evolving into an impassioned advocate for the disabled. He may have had the clout to open the doors in high places for her, but she had the determination and power of persuasion to parlay her obsession into reality.
Despite her accomplishments in educating the public, funding medical breakthroughs to prevent disability, and bringing rehabilitation to those in need, my mother still endured the heart-breaking stigmatization of having a severely disabled child.
It affected every member of our family. My life was a dichotomy. I can remember when I was maybe only five how my whole family was ostracized whenever we went out together. Yet we were welcomed by royalty and U.S. Presidents. I was designated, from about the age of eleven, to travel during my school vacations with my eldest sister and her beloved care-giver, Miss Karen Hansen. We went to clinics all over the U.S., searching for new therapies that would alleviate my sister's symptoms. My sister had spastic movements, was wheelchair-bound, had to wear a bib in restaurants, and was only able to voice strange sounds. We were collectively stigmatized. No hotels except Howard Johnson's would accommodate us; most restaurants would not seat us and on those occasions when they did, we would get a table near the kitchen or the rest rooms.
Over the years, my mother had several mental breakdowns, alternating with depression and rage; she never let my younger sister and I forget that we had no excuses not to always excel since we were born able-bodied. She was an extremely tough taskmaster: overcompensating, unforgiving; she needed to prove that her children were better than others!
My mother, with the help of my dad, initiated, lobbied and led a movement in 1973 to amend the Rehabilitation Act, Section 504. Section 504 is the groundbreaking predecessor by seventeen years to the better known Americans with Disabilities Act. For the first time in our country, Section 504 prohibited discrimination on the basis of disability. It is because of my mother's unique ideas that in every American city, federal laws mandate shaved corners of street curbs, lowered public telephones, enlarged restroom cubicles, ramps in public buildings, and designated handicapped parking.
On her good days, my mother was sometimes described as being "spiky as a pineapple" because she didn't believe in making social small talk ... she was blunt and got to the point and demanded action! I have been told that during those heady years when everything was possible after the first moon landing, my mother bristled, "If we can propel rocket ships to the moon, why can't we use some of that same technology to help the disabled move more easily on earth?"
Acting on her instincts, she demanded that my father arrange a meeting with the head of NASA. What was to be a favor to my Dad, a perfunctory 10-minute meeting, turned into an all-day dialogue involving many of NASA's top space engineers. Shortly thereafter, she organized and, with my Dad, hosted an unprecedented meeting at California's Ames Research Center with NASA scientists and engineers, participants from the National Institute of Health and the Veterans Administration, medical professionals and academics, to find practical applications of space technology for the disabled.
My mother's inspiration and perseverance resulted in the development of a light-weight wheelchair, multi-directional conveyances which can climb stairs, remote control "space garments" to move limbs, sensory devices to help the blind, amongst many other breakthroughs and ... my mother united the worlds of science, technology and medicine in the first-ever collaboration!
The loving kindness of my oldest sister's lifelong caregiver, Karen Hansen, helped my younger sister and I withstand our mother's extreme moods and unstable temperament ... and as a "sounding-board," she, in a sense, gave my mother informal therapy. My mother, stoic and obstinate, didn't believe in therapy—to her it connoted weakness.
Miss Hansen gave my sister Cookie unconditional love. Most of my life, I remember Miss Hansen saying, "I have but one wish—that your sister dies before I do. No one will ever be able to love her as I do." My older sister died a week before Miss Hansen was hospitalized with an inoperable brain tumor. Cookie's death certificate stated the cause as pneumonia, but I know Cookie died of a broken heart. My mother had Miss Hansen buried next to Cookie.
My mother was exposed to some of the world's greatest thinkers from whom she absorbed a plethora of information. This probably helped her to persuade Harvard Medical School and MIT's Graduate Schools to start an exchange program and collaborate. This model of partnering competitive universities is now used world-over.
Both of my parents were active in United Cerebral Palsy after my Dad retired as Chairman of ABC, having sold the network to Capital Cities in what was then the largest media deal in history.
In 1994, my mother and father donated sixty million dollars to Harvard Medical School. This was the largest gift ever made to that medical school and the seventh largest made to education in the U.S. The contribution established the Isabelle and Leonard H. Goldenson Biomedical Research Building which houses Harvard Medical School's neurobiology laboratories dedicated to the study of the brain.
My mother was a paradox: While frequently dysfunctional, she was still able to obliterate a legacy of injustice for the largest minority in the world, the disabled. From her mouth came the voice for those who could not be heard ... and from her heart came the empathy for the physically and mentally disadvantaged, who, until little more than five decades ago, were shunned and hidden from society.
She was an extraordinary force. She motivated me to become strong, self-sufficient, and resilient; she empowered millions. She changed the laws, charted virgin research territory, created new academic, scientific and medical paradigms, and gave people with disabilities optimism for the future.
Helen Keller said, "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired and success achieved."
My mother and ICRF had much in common: the focus on funding innovative research; inspiring institutions and laboratories to collaborate rather than compete; coming up with original strategies to raise research funds; going beyond boundaries to foster wider application of scientific findings; and always giving the public hope by disseminating information about scientific breakthroughs and making possible a better quality of life.
Thank you, ICRF, for all that you do ... and thank you, Mother, for all that you did.