DISABILITIES

By Daniel J. Vance

Theresa Taylor of suburban Minneapolis is immersed in disability.

“I have Stickler's syndrome,” she said in a telephone interview. “I'm totally blind from it. I lost my vision completely at age 10. Three years ago, and though not having any vision left, I developed glaucoma and doctors had to remove my eyes. Now I have a prosthesis in both. ”

Also, the 38-year-old Taylor is completely deaf in one ear and “moderately” deaf in the other. And in her rheumatologist's words, she has deteriorating bone joints resembling that of “a 90-year-old woman's.”

According to www.sticklers.org , Stickler's syndrome is a genetic, connective tissue disorder that strikes the heart, eyes, ears and bones. People with it may also have flat cheeks, a flat nasal bridge, small upper or lower jaw, pronounced upper lip groove and/or cleft palate. It affects perhaps 25,000 Americans.

Theresa's husband, 41-year-old Ken Taylor, has had struggles, too. “He is an albino, has white hair, lacks skin pigment,” said Theresa, “and with 20/200 vision he's legally blind.”

Married 18 years, the Taylors have a 15-year-old son with Stickler's syndrome, a 13-year-old son with Attention Deficit Hyperactivity Disorder, and an 11-year-old daughter with Stickler's syndrome. On several occasions, doctors have said their daughter likely wouldn't live long. And they home-school all their children.

To most Americans, this would seem overwhelming. But rather than causing despair, the Taylors' daily struggles with disability seem to have brought about much good in their lives. “My condition has [worsened] so much since we've been married,” said Theresa, “and it has only deepened our love. Our commitment to each other has been incredible.”

Ken and Theresa, also a licensed pastor, have become active as ministry associates with Joni and Friends, a faith-based organization helping churches involve and include people with disabilities. Theresa said that church goers often shy away from befriending people with disabilities because they often don't know how to respond to disablity and/or they believe developing a relationship would require too much energy or time.

As for attitude, though immersed completely in disability, the Taylors seem amazingly upbeat. “People often ask us how we could enjoy life so much, because we usually joke and laugh a lot,” she said. “We just tell them we take life one day at a time.”

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