Hospital Accommodates Blind Writer/Editor/Graphic Designer

October 15, 1998

National Disability Employment Month - October


LOS ANGELES (October 15, 1998) - Retinitis pigmentosa had long been chipping away at Jorian Clair's vision when the writer, editor and graphic designer applied for a position at Cedars-Sinai Medical Center nearly 14 years ago.

Although there was no doubt that the hereditary disease would continue to gradually but completely destroy her vision, she says she was welcomed at the medical center. In fact, her colleagues and supervisors have worked with Jorian over the years to accommodate her disabilities -- both RP and mild systemic lupus erythematosus -- in order to benefit from her talents. Her office location has been changed several times, allowing her to avoid crossing the street and keeping her from having to battle heavy foot traffic in the halls. Special lighting has been installed in her office and the model of computer she uses was chosen because it could easily be equipped with special software for the visually impaired as her eyesight waned.

"The good news is that as long as my brain works, I don't need sight to write," says Jorian, who has produced award-winning copy and scripts while breathing new life into the medical center's Compass magazine, a 76- to 92-page quarterly publication that has both a local and national audience. She says computer technology, using scanners and voice synthesizers, continues to improve, enabling those with little or no sight to read and edit copy.

Jorian has no sight remaining in her left eye and only minimal "direct-on" vision in her right one. She uses a magnifying glass when proofreading, and to write and edit copy on screen she increases the point size to 26 and changes serif typefaces to sans serif bold. She will likely lose her sight completely over the next couple of years.

Even so, she can't imagine not working. "If there's anyone in the world who should be working, its someone with a disability," she says. "The alternative is to stay home and feel sorry for yourself, feel dependent and fearful, and lose your self-esteem." Retinitis pigmentosa, an umbrella name for a variety of inherited defects, affects the ability of the retina -- the light-sensitive lining at the back of the eye -- to properly respond to light. As in Jorian's experience, decreasing night vision and peripheral vision usually are the first noticeable symptoms. And although complete loss of sight may be sudden, it usually occurs over a span of years.

There's no question that retinitis pigmentosa has changed Jorian's life. It has stolen her ability to do some of the things she always loved, such as reading a book before going to sleep at night. But it hasn't stopped her from finding new sources of enjoyment.

"If you can't do something one way, find another way," she says. "Challenge your disability. Set realistic goals but non-ending goals and keep raising the bar." She recently raised the bar personally when she earned a purple belt in Tae Kwon Do -- after achieving white and yellow belts. The idea of learning a form of self-defense came to her when she started using a blind-person's cane. As a petite woman carrying a red-tipped cane, she began to feel like an easy target for a mugger. In addition to increasing her sense of security, martial arts training provided unexpected benefits.

"There's a tendency, especially for someone with a disability, to let our bodies go," she says. "Nothing could be worse." By learning Tae Kwon Do and being involved in the self-empowering philosophy it offered, she lost weight, gained muscle tone, and received a tremendous boost to her self-esteem.

For those who have a disability but who want to challenge themselves and make a difference in the workplace, Jorian suggests directing job searches toward institutions that have a track record of hiring and accommodating people with disabilities. "When I came to Cedars-Sinai," she says, "I was up-front about my sight impairment and they were especially receptive."

In his 1998 proclamation of October as National Disability Employment Month -- a designation established by Congress in 1945 -- President Bill Clinton said, "Employment is the best path to economic security and to personal and professional fulfillment. I salute disability community leaders, business and labor leaders, government officials, community organizations, and concerned citizens who are working together to remove the remaining obstacles on that path so that all Americans with disabilities have the opportunity to contribute to our national life."

"The Americans with Disabilities Act (ADA) is making it possible for millions of Americans to participate more fully in our society," Clinton said. "However, eight years after the ADA's passage, the unemployment rate among people with disabilities is still far too high. Almost 75 percent of working-age Americans with severe disabilities remain unemployed. If America is to live up to its promise of equal opportunity, and if our economy is to continue to strengthen and expand, we must be able to draw on the untapped energy, talents, and creativity of this large and capable segment of our population."
For additional information on National Disability Employment Awareness Month, contact: Presidents Committee on Employment of People with Disabilities, 1331 F St. NW, Suite 300, Washington, D.C., 20004. Phone: (202) 376-6200.

For media information and to arrange an interview, please call 1-800-396-1002 (this number is not for publication).

Cedars-Sinai Medical Center

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