Hearing loss may be an invisible problem, says Arlene Romoff of Hackensack, but its implications are very real and demand immediate attention.

“The prevalence of hearing loss in the general population is about 10 percent but rises with age,” said Romoff, who is the co-founder of Advocates for Better Communication, the Center for Hearing and Communication’s advocacy committee, and past president of the Hearing Loss Association of New Jersey. “This is an invisible problem that really hasn’t had enough light shone on it.”

Romoff, who was born in 1948, had normal hearing until her teen years, when a slow degenerative hearing loss, which moved from mild to moderate to severe at approximately seven year intervals, rendered her profoundly deaf about 25 years later. Now, thanks to cochlear implants, she can hear once again.

A longtime Bergen County resident and advocate for people with hearing loss, Romoff said one of the main obstacles was, and often still is, “that the mainstream thinks sign language interpreters are what all people with hearing loss need, when the vast majority actually need assistive listening systems and captioning. So educating about needs has to occur first.”

When she began to lose her hearing, “there was nothing to be done other than a hearing aid,” she said. Realizing that more was needed, she turned to advocacy. “It was really a spiritual decision, that if this was happening, something good should come of it,” she said. “I realized that because I was struggling and needed accommodations, other people were struggling, too.”

In 1991, with the enactment of the Americans with Disabilities Act, “we had some teeth to put into this endeavor. At that time, the idea of restoring hearing was preposterous. I didn’t even entertain that thought. All I prayed for was the strength to deal with it.”

Advocacy itself, however, also was something of a struggle.

“Hearing loss is a communications disability,” Romoff said. “You’re cut off from the normal means of doing things. You cannot pick up a phone and have a discussion with other people with hearing loss. You can’t do group therapy if you can’t hear. You have to be creative.”

She pointed out that only about 2 percent of the deaf use sign language.

“Interpreters help only a teensy bit of the population but get a lion’s share” of the attention, she said. The other 98 percent require assistive listening systems, captioning, hearing aids, or cochlear implants.

Romoff noted that the ADA requires some kind of assistive listening system in all public auditoriums, whether infrared, FM, or looping systems. But, she said, “the problem with the ADA is that it’s complaint-driven. People with hearing loss have no idea what they need to function. They’re cut off from the general information flow.”

In addition, she said, “They may not request what they need. There’s a sense of denial – don’t make waves. It’s a behavioral trait. I advocate for all those who won’t or cannot come forward because they don’t know, are unwilling, or won’t make waves but need accommodations.”

Her own synagogue, Temple Beth Or in Washington Township, installed an assistive listening system in 1984.

“The rabbi said that even if only one congregant needed it, we should have it,” Romoff said, noting that at one point her hearing was so bad that she couldn’t benefit from it. But now, with the cochlear implants, she is able to use it. Still, she said, it may not be good enough for everyone with hearing loss.

Romoff said that a third accommodation is captioning, whether done in real time or post-production. She pointed out that in 2006 the FCC mandated captioning on all television programs, including cable shows. In 2010, legislation targeted the internet.

“They’re realizing that people with hearing loss need to be connected,” she said. “Open captioning is what we call universal access, like ramps. People don’t seem to get it. They think if you can walk into a theater, what’s your problem? But if you can’t understand, then why attend ““ whether it’s a movie, conference, convention, class, or town hall meeting. Just walking in isn’t enough…. We have to go back to square one. [People know] you need a ramp for a wheelchair. But captioning and assistive listening systems are needed for people with hearing loss.”

Romoff said her advocacy is goal-oriented. “If you can get a success with low-hanging fruit, go for it,” she said.

In 1996 she worked with the Paper Mill Playhouse in Millburn to add an LED screen showing three lines of dialogue at a time for a scripted play; later she convinced Theatre Development Fund in New York to do open captioning for Broadway shows. Her other advocacy initiatives have resulted in increased access for people with hearing loss at museums, movies, hospitals, and public events.

“It shows hearing people what can be done,” she said.

On a more personal note, Romoff’s husband, Ira, died in July, and open captioning was used at his funeral.

“Colleagues at the Center for Hearing and Communication asked me if I wanted captioning,” she said. “They worked with the funeral director at Gutterman and Musicant and one of the captioners in Bergen County, who knew Ira, was happy to do it. I had nothing to do with micro-managing it.”

The addition of the large screen and the scrolling real-time text meant that people who might not have come did so “because there was captioning and they understood everything,” she said. “[Otherwise] they would have just sat there.”

Before officiating at Ira Romoff’s funeral, “I had never seen anything like that before,” Temple Beth Or’s religious leader, Rabbi Ruth Zlotnick, said. “Everyone who could support Arlene was able to be there.”

Zlotnick said she has been approached about accessibility issues not only by Romoff but by another congregant with hearing loss, who told her that she chose the congregation because of its assistive listening system.

“They have shared with me in various ways how we can make the synagogue more accessible,” Zlotnick said. Among other things, she learned that the acoustics in the synagogue’s social hall make it difficult for members with hearing loss to participate in any kind of socializing.

“Arlene also brought to my attention that the room where we have some adult learning sessions can be difficult acoustically,” she said. “We’ve adjusted that and put up dividers with cloth to absorb some of the sounds.”

Because she has some issues with vision herself, she feels sensitive to disability issues, Zlotnick added. Still, “while I had some consciousness [of this], they really raised my level of awareness tremendously. I want the synagogue to be a place where everyone can deepen their connection.”

One problem, she has learned, is that members may not know that the synagogue has an infrared system and therefore may not ask to use it.

“It requires better communication,” Zlotnick said, noting that the synagogue brings in a sign language interpreter on an occasional basis, using the talents of a member “with a special skill signing Hebrew prayers.”

The synagogue would also be open to captioning, “but the issue is one of funding,” she said. “That would be the only barrier to exploring it with the board.”

On the whole, Romoff said, houses of worship do not provide accommodations for people with hearing loss “unless someone who needs it is proactive. But the typical person won’t self-identify. With most disabilities, the person [with the disability] asks – but not for hearing loss.” She said it’s a “rude awakening” to advocate for facilities and then tell the institution in question that they have to educate the consumer.

Romoff said she recently began attending Torah study sessions at her synagogue, explaining to the group at the outset that while she would not bog down the conversation, fellow participants should be aware that “I’m in your midst, with a hearing disability.”

“You need to be proactive, to tell them that this is how I’m going to function,” she said.

She wants people to know that hearing loss “is not just an invisible disability but impacts everything 24/7.” Her two books, “Hear Again – Back to Life with a Cochlear Implant” and “Listening Closely: A Journey to Bilateral Hearing,” were designed to educate both people with hearing loss and people whose hearing is normal.

“It’s not just about hearing loss but what the impact is,” she said. “Even with just mild hearing loss, the impact is insidious.” For example, she said, deafness may lead to isolation, which leads to further problems.

Romoff recently led a book discussion group at her synagogue, based on her writings. She also visits interested groups to speak on related topics ranging from coping strategies to sensitivity training.

For more information, go to Romoff’s website, www.listeningclosely.com, or to www.hearingloss.org, or send an email to info@hearingloss-nj.org.