DISABILITIES

By Daniel J. Vance

Jill Sklar, 36, of Huntington Woods, Mich., has Crohn's disease, which is an inflammatory bowel disease affecting perhaps a half million Americans.

“I was diagnosed when I was 20,” she said in a telephone interview. “I was told I had something incurable. My symptoms are acute diarrhea, abdominal pain, fevers, and weight loss.”

The Crohn's and Colitis Foundation of America reports that Crohn's disease has no known cause or cure. Like its medical cousin, ulcerative colitis, which involves another half million Americans, Crohn's disease is most common among whites in developed nations, and in the U.S. is more prevalent among people in northern, urban areas.

“It's debilitating,” she said. She had to give up her career as a newspaper reporter when symptoms worsened. “It just became too difficult to get to a bathroom ten times a day. Imagine being at a press conference and having to tell the interviewee to 'hold that thought' while you leave for a bathroom.”

Today she works at home as a free-lance writer, penning articles for medical magazines and authoring medical-related books. She is also fighting to change state laws.

Her fight began a few years ago after being refused entrance to a back-room bathroom at a shoe store. “I called our state civil rights department because I thought my 'access' rights had been violated. Businesses have to accommodate other disabilities, why not this one?”

Like many others with Crohn's, she has had sections of her intestines surgically removed. When she feels the urge to relieve herself, she must act quickly. A great deal of people have similar problems: About 18 million Americans have either urinary or fecal incontinence.

Sklar filed a grievance with the state concerning the shoe store, but the best she could get was a “very poor apology.”

She then contacted her state representative, who is currently sponsoring a bill requiring businesses to give back-room bathroom access to people showing a signed note from a physician. The only state with such a law is Maryland, which requires businesses over 20 employees to allow access to people with Crohn's or ulcerative colitis.

“At first I was humiliated,” said Sklar of being denied bathroom access at the shoe store, “but now I'm angry. I'm determined to change this. It was the last straw. This has happened to me hundreds of times in different places.”

For more, see www.danieljvance.com or www.ccfa.org