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Turning Wheelchairs Into Hot-Rods

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Although the month of March served as national Developmental Disabilities Awareness Month, for most of us who are not afflicted with a disability, or don't know of someone who is, this commemorative month flew by unawares. There is, however, one woman who is trying to change all that. Loreen Arbus, whose has long been dedicated to empowering the disabled through the United Cerebral Palsy (UCP) foundation, has embarked on a personal journey that is best exemplified by a poster hanging in the UCP New York City headquarters which reads, 'It's not my wheelchair -- it's my hot-rod.' "I'm here to provide these individuals with the tools to build a fulfilling life," Loreen says. "Identifying with those who are in situations where they may feel disadvantaged is very personal to me."

What could a healthy child born into a wealthy and privileged family whose father, Leonard H. Goldenson, was founder and chairman of American Broadcasting Company (ABC) and deemed 'the man responsible for modern TV,' and whose mother, Isabelle Weinstein Goldenson, co-founded United Cerebral Palsy (UCP) in 1949, have in common with anyone considered 'disadvantaged'? "In a word," Loreen responds, "Everything."

Her older sister Genise (or 'Cookie,' as she was nicknamed) was born in 1943 and later diagnosed with cerebral palsy. "From then on," Loreen says, "my life was a dichotomy." While Loreen and her family were welcomed by royalty and U.S. presidents, they were ostracized by most others. Due to her sister's spastic movements, she had to use a wheelchair, wear a bib in restaurants, and be fed through a straw. No hotel, except for Howard Johnson's, would accommodate them, and most restaurants would not seat them.

Yet, Loreen found both solace and courage during this trying time with the help of one woman, her sister's full-time and life-long caregiver whom, Loreen says, "I worshipped." Karen Hansen came into her sister's life when she was just one year old, taking care of her 24/7, without ever taking a day off. "Her one wish," Loreen says, "was that she hoped Cookie would not outlive her, since she felt my sister could never survive the pain of such a loss." She was right. When Miss Hansen, as Loreen respectfully called her, learned she was dying from cancer in her mid-seventies, Cookie, who was still only in her twenties, passed away just five months before her caregiver's death. "My sister's death certificate listed her as dying from pneumonia," Loreen recalls, "but I believe she truly died of a broken heart."

Yet out of tragedy can often come a strong sense of purpose, and for Loreen this has proven particularly true. She recalls that, more than anything else, Miss Hansen "taught me the true meaning of kindness," a trait further instilled by her father, Leonard. Loreen has thus made it her mission to honor the work of the caregiver, 'the unsung heroines,' as Loreen calls them, whose kindness comes in all manners of form to help transform lives, yet who are still so severely unappreciated.

And she is doing so through the creation of the 'Women Who Care' luncheon, an annual event benefiting UCP/NYC which honors female role models representing various segments of the community and celebrates women who have blazed new paths, broken glass ceilings and inspired others to achieve whether they be caregivers, volunteers or professionals. In its 11th year, the luncheon has thus far included a number of notable honorees and presenters including Diane Sawyer, Oprah Winfrey, Martha Stewart, Marlo Thomas and Helen Gurley Brown. The annual gala culminates in the presentation of the final award, The Karen Hansen Caregiver Award, which is always presented to individuals or groups that have gone 'above and beyond' to support people with disabilities. At this year's gala on May 3rd, 2012, the award will be presented to Margaret Puddington, founder of the Coalition of Families for Direct Support Staff in Services for People with Developmental Disabilities. "It is the award I hold most dear," Loreen says.

Through Loreen's efforts and others who continue to support UCP/NYC, the organization currently serves more than 14,000 individuals and family members through more than 75 programs, but there is still much more work to be done. Fortunately, the federal government has started to step up. To ease mobility, new ADA rules are going into effect for recreational facilities to meet updated standards of accessibility, and laws are being enforced to better retrofit homes and businesses to make them more usable. But although efforts like these are being instituted to help people with disabilities, a population which constitutes the largest minority group in this country, Loreen asserts that some of their basic health needs are still not being met. "Could a person with cerebral palsy sit still long enough to get a basic dental exam, or could a woman stand perfectly still in order to get an accurate mammogram?" Loreen asks, "In most cases, this is just not possible."

Looking back on those years when everything did seem possible following our country's first moon landing in 1969, Loreen recalls her mother angrily bristling, "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?" Today, more than 40 years later, Loreen continues to dedicate her work to her mother's wish and Miss Hansen's boundless service, thereby paving the way for the disabled to not only increase their mobility, but to live more fulfilling lives. "I don't view a disability as a barrier," Loreen says, "but as an opportunity." This exact sentiment is clearly echoed on yet another poster hanging on the UCP/NYC wall which reads, "It's not a (wheelchair) ramp, it's a welcome mat," Now if only our country could do even more to step it up... and step on in.

Lori Sokol, Ph.D. is founder and publisher of Work Life Matters magazine and co-author of The New Agile Workforce and Workplace: The New Future of Work, (2011).