The Forgotten

Click here for the original version of this page.

'The Forgotten' Cope Without Sight, Sound
'Interveners' help deaf-blind Utahns in dark, silent world
By Dennis Romboy - Deseret News staff writer
From the Deseret News

They are small things, mustard pretzels.
Couch potatoes down them without blinking on Sunday afternoons. Barflies subconsciously munch them between rounds of drinks.

But Stephen Ehrlich had never tasted one until a friend introduced him to the common snack food. He can't see the rows of cellophane pretzel bags lined up on store shelves. He can't hear Rold Gold being pitched on television. He must rely on someone else to tune him into most everything life has to offer, even flavored pretzels.

"I find out later about all these new things, and I'm very surprised," he says in sign language through interpreter Kirsten Gwilliam, a state deaf-blind specialist.

Ehrlich is among 135 Utahns the state has identified who are both deaf and blind. They are old and young. Male and female. Some were born deaf or blind and lost the other sense over time or in an accident. A genetic disorder called Usher syndrome is a major cause of deaf-blindness. It combines hearing loss and retinitis pigmentosa, an incurable disease that gradually destroys the retina and optic nerve until blindness occurs.

"It's a very unique disability group. The two disabilities in combination are very difficult to handle and cope with," said Bill Gibson, director of the state Division of Services for the Blind and Visually Impaired. "I've felt it has always been a forgotten group in the state of Utah."

Gibson attempted to make the Utah Legislature more aware of the deaf-blind community while lobbying for a bill seeking $360,000 to hire "interveners," specialists who can communicate with deaf-blind Utahns and regularly take them shopping or to the doctor's office. But the heightened awareness didn't translate into the dollars the division requested. Gibson said it will try again next year.

The funds are sorely needed, he said, to help deaf-blind residents maintain their independence. Nationally, there are an estimated 70,000 people who are considered deaf-blind. Most are not totally blind or totally deaf, according to the Helen Keller National Center. There is a wide range in the degrees of vision and hearing loss. The estimate excludes the number of older adults who are going blind and deaf due to age.

"If people always make decisions for them, deaf-blind people cannot grow. We're all humans. We all need to learn and to grow and to make mistakes. And that's a challenge," Ehrlich said.

Independence lost
Ehrlich, 52, has Usher syndrome. He was born deaf and slowly lost his eyesight over 40 years. He learned sign language. He earned a history degree from Gallaudet University, a college for deaf students in Washington, D.C., and a master's in special education at Cal State-Northridge. He taught at a school for the deaf in Seattle. He owned a car.

But the inevitable blindness devastated him.
"It wasn't easy," he said. "It was a traumatic experience for me, because I was used to being independent."

Along with his eyesight, Ehrlich lost a highly valued, closely guarded right — privacy. He could no longer read his own bank statement or his phone bill or intimate letters from friends. He had to get someone else, perhaps an intervener sent over by the local social services agency, to read his personal correspondence. He found himself having to trust strangers whom he couldn't see.

Ehrlich currently holds a part-time job rolling plastic garbage bags into bundles for sale. He calls it busy work. He's taking computer training in hopes of finding a more challenging career.

He laments his lack of mobility, independence and access to information.
Ehrlich uses Flextrans, a UTA service he must call for pick up, to get around. He'd like to use the regular city bus system but says it's not as accommodating as the one in Seattle where he used to live. He'd walk more if Utah's busy streets weren't so wide. He fears being hit again. A steel rod in his right leg is a constant reminder of the day a dump truck plowed into him some years ago.

And when he is out and about or at work, he says, most people don't approach him because they are scared of him.
"I feel lonely, but I'm used to it. I have my limits. I need to socialize," he said.
Ehrlich, whose reddish-blond hair and soft features belie his age, has to literally grab someone's hand to break out of his dark, silent world. He and Gwilliam are seated on a couch in Ehrlich's shadowy Murray apartment. They are engaged in what looks like a thumb fight. Ehrlich has his left hand gently cupped over Gwilliam's right as she furiously makes a series of hand signals. When she stops, Ehrlich pulls his hand away to sign a response.

And so it goes as Gwilliam relays a visitor's questions to Ehrlich, who signs his answers, sometimes accompanied with a smile or a twinkle in his blue eyes.

Tactile sign language is one of the few ways deaf—blind people can communicate face—to—face with another human being. Sometimes it's as elementary as drawing letters to spell words in each other's palm.

When hands are eyes
Jana Ehrlich, Stephen's wife of five months, didn't even know that much when the couple first met at the dentist's office where she works. Jana Ehrlich, 43, sees and hears. She never had a need for sign language before. She recalls being blown away by Stephen Ehrlich's intelligence as she and co-workers peppered him with questions he answered through an interpreter on that first visit.

"It was just totally amazing," she said.
And she continues to be amazed as she gets to know her new husband better. She studies American Sign Language at Salt Lake Community College and said the biggest adjustment to being married to a deaf—blind man is the time it takes to talk as husband and wife at the end of a day. She can't say aloud, "Honey, guess whom I saw today?" while she makes dinner or watches TV.

"When we're communicating, nothing else can be happening. But I enjoy our conversations," she said, adding they often seem to read each other's thoughts. "And don't think we don't argue, because we do argue. Mostly it's just miscommunication."

One of her cherished moments with Stephen came after he took a hands-on tour of the interior of the LDS Church's Bountiful Temple. He felt the walls, the windows, the stair rails. He wanted to touch every nook and cranny. At the end of the walk, he asked, "How is the Bountiful Temple different than the Mount Timpanogos Temple?" He already knew the answer. The edifices are identical.

Stephen Ehrlich's hands are his eyes. He uses them to discern things that even sighted people miss.

He once ran his hands over the freshly painted wall at a friend's place, informing him a spot was missed. The critique was unexpected from a blind man.

"He was shocked, " Ehrlich said of his friend. "Your eyes can't perceive everything. Sometimes your eyes are deceptive."

Nevertheless, he longs for his eyesight. "I have often said to myself, 'I wish I could see everything, including Jana's face," he said. "But to me, I know that when I go up to heaven, my sight will be restored."