By Delthia Ricks, Newsday 2/16/09
Melville, NY – One in a row of brown and beige look-alike buildings, Destiny Home appears as any other 1960s duplex in Port Washington. But inside, five residents are cocooned in an environment geared for people who are blind – or almost so – and deaf.
Deaf-blindness is an unusual disability that presents a number of challenges. There are mobility problems as a result of the blindness. It is more difficult to navigate from place with low or no vision. Being hearing-impaired complicates communication. An estimated 85 percent of what anyone knows about the surrounding world is perceived through vision and hearing. When both senses are impaired, affected individuals are extraordinarily disadvantaged.
The home – a first of its kind in New York that is expected to become a model for other states – is an uber-supportive environment. The passport into it is a knowledge of American Sign Language. Designers of the home’s interior took into consideration what it’s like to be cut off from the world of sights and sounds.
Beds vibrate to signal an emergency. Kitchen cabinet knobs are oversized. One resident with low vision has a computerized relay system for telephone conversations, which features a live operator who appears on screen to translate a caller’s spoken words into sign language. The resident’s signed words are translated into spoken ones for the person with both senses.
Buzz of activity
Roland, David, Damali, Tanisha and Linda are Destiny Home’s five residents. (Administrators of the home asked that residents’ last names not be published to protect their families’ privacy.) They range in age from early 20s through early 40s. They moved into the home last summer, each having waited for years to live in a supportive atmosphere.
Eavesdropping on this world, it’s easy to discover a community abuzz with activity though nary a word is heard.
While Roland donned a wide-brimmed hat on a recent chilly afternoon, as he prepared to escort a visitor around Destiny Home’s backyard, David busied himself at his computer.
A Braille version of a Nancy Drew novel – the size of a major city’s Yellow Pages – captured Tanisha’s attention, as Damali helped herself to milk and a cookie in the kitchen. Linda dressed for visitors: a purple dress and matching purple necklace.
This makeshift family has been molded from a common disability. They are among an estimated 70,000 deaf-blind people nationwide, though that figure may be as high as 1.5 million, some experts say, when adults who lose hearing and vision due to age and medical disorders are counted.
All three women are completely blind; the two men are legally blind. “When we talk about legal blindness, that’s 20/200 in the good eye with correction,” said Joseph McNulty, executive director of the Helen Keller National Center for Deaf-Blind Youths and Adults, which administers the residence. All Destiny Home residents are deaf.
Most people who are deaf-blind from childhood, as is the case with Destiny Home’s residents, lose their hearing and eyesight to one of two causes: Usher’s syndrome, a rare genetic condition; or congenital rubella syndrome, which occurs during the fetal stage when pregnant women catch German measles.
Eyes on LI facility
None of the residents had been successful living independently on Long Island despite having undergone training at the Helen Keller center in Sands Point, McNulty said. The region is expensive, a job is necessary and a support system is vital. Organizers hope Destiny Home’s emphasis on job training will give residents stronger financial footing.
State-funded, the duplex has a staff of 15 people who work in shifts around the clock. It costs $1 million annually to run.
The state’s support for Destiny Home includes “life coaches” who serve as constant companions to each resident. They help with tasks such as choosing clothing and dressing, as well as explaining what’s going on, moment by moment, using American Sign Language.
For those with low vision, sign language is performed as it would be for someone who is deaf. For residents with no eyesight, words are “finger spelled” into their hand. Helen Keller famously learned to understand the world through the same technique more than 120 years ago.
Destiny Home is winning high marks from experts outside New York.
“We are excited to see that Destiny Home is available for deaf-blind people and they are living in an environment where they can be independent and still receive the support they need to be fully independent,” said Elizabeth Spiers, who is deaf-blind and spokeswoman for the American Association of the Deaf-Blind in Silver Spring, Md. Spiers was interviewed by e-mail. She is legally blind but can read words on her screen in large type.
A sign of hope
In the general population, the deaf-blind are often cut off from communication, even within their own families, often because of an unwillingness among parents to learn sign language, said Suzanne Ressa, marketing and development director at Helen Keller.
“They’re very vulnerable to abuse because they’re a silent population,” Ressa said. “How would they communicate to authorities if something happened – to say they need help?”
One of the five Destiny residents (whom neither Ressa nor other administrators would name) is a survivor of the notorious Willowbrook State School, whose long and sullied history resulted in a spate of lawsuits against the state of New York.
The Staten Island institution, closed in 1987, served as a home for mentally disabled and deaf-blind children. Many were subjected to a series of abuses, including the intentional injection of the hepatitis virus in a bizarre scientific experiment, a state commission later found.
Whatever their past traumas, the residents indicate they view Destiny Home as a safe haven and a place to grow.
David has a job at La Piccola Angelina, an Italian restaurant in Port Washington. He works in the kitchen. The opportunity came after a group from the Helen Keller center – communicating at its table in sign language – lunched there last year.
Tanisha has an internship at the Stop & Shop in Port Washington. “She unrolls the cookie dough and puts the dough on [baking] trays.” said Laura Rocchio, of the Helen Keller center. “She also does the bread. We’re evaluating her production. She can do a good number of trays in 55 minutes.”
Tanisha signs a response.
And Rocchio interprets aloud: ” ‘I love the smell of baked goods.’ ”
- Thanks to NVRC, Fairfax
