As a teenager, Arlene Romoff began to progressively lose her hearing. It became a profound loss several years later. In 1997, she received her first cochlear implant and a second one in 2008. The author of two memoirs, Hear Again: Back to Life with a Cochlear Implant and Listening Closely: A Journey to Bilateral Hearing, Romoff has been a passionate activist for captioning. Her work has included advocacy for captions at live theaters, movie theaters, and on the Internet, among other venues. She co-founded the Hearing Loss Association of New Jersey, where she served as president.
Here, in Romoff’s own words, is how she brought captioning into the international spotlight.
First Step: Find A Mentor and Build a Team
Being a successful advocate often means collaborating with others. While personal advocacy projects can be fruitful – being assertive about asking for the accommodations you need – the larger projects often need a determined group of people to effect change. Back in 1991, when the ADA was first enacted, the Center for Hearing and Communication – CHC – (then known as the League for the Hard of Hearing) founded its volunteer advocacy committee, Advocates for Better Communication (ABC). The driving force of this committee was a retired anthropology professor, Dr. Paula Brown Glick. She had a hearing loss and was determined to change the world, and needed help on this mission. I was exposed to her enthusiasm, and outspoken tenacity to contact people who were in a position to effect change. I learned quickly that griping among ourselves (venting) never changed anything. And so I learned to speak up – not only to others with hearing loss, but to the people and places that could effect the changes we were seeking.
One of my first advocacy projects was accompanying Paula to the Museum of Modern Art (MoMA) in the early 1990s. My hearing was so poor at that point that I used a personal frequency-modulated (FM) system, and held the microphone of the transmitter close to the person I was speaking to. The museum staffer whom we met with thought this FM system would be perfect for gallery tours, so they purchased their own systems – and that, I believe, was the first use of FM systems for guided tours – something that is now a standard accommodation for people with hearing loss in arts and other venues. MoMA then was open to our suggestion of providing CART for their public lectures, and became the first museum to do so. The Metropolitan Museum of Art followed their lead soon after as well.
Aside from the MoMA initiative mentioned above, theater captioning was also an early advocacy endeavor. I attended many meetings related to advocacy beginning in the early 1990’s – and they were all realtime captioned. These meetings were all advocacy-related, so I didn’t have to fight to get the accommodation. The captioner who did CART at these meetings used an LED screen, and it occurred to me that if theaters could provide sign language interpreters for performances, then providing an LED screen with scrolling captions could be done as well.
At an arts access meeting in New York City, sponsored by Hospital Audiences Inc, I asked to demo CART captioning, using an LED screen – pointing out to the theater people at the meeting how it could easily be used for live theater performances. That was 1994. I wrote about it in a New Jersey Arts Council newsletter that year – and continued to pursue this captioning advocacy.
In 1996, we had the first successful open captioned live theater performance in New Jersey – and on Broadway in 1997. And it’s been growing ever since.
I would like to see an expo of the available and upcoming movie captioning technologies – with some unbiased, balanced focus groups to evaluate them. There’s not enough known about the newer devices coming to market, or even the ones already in use – and far too much infighting and speculation on what is not “best” or just “good enough.”
I sense that people are so desperate for captioning in the movies that there’s a rush to install without enough information about the pros and cons of the devices. I also see the term “preferences” used when the reality is that some people are unable to use some of the technologies being promoted – which is not a “preference.” Relying on facts and information is essential to effective advocacy, and that is missing right now in movie captioning advocacy.
How to Advocate for Captioning
The answer to that question is simple – ask for it. There’s a behavioral trait among many people with hearing loss that they will not ask for the accommodations that they need to function – even if it means being left out, or not understanding. I’ve found that when a person explains what they need and why they need it, they often get what they need. If it’s public meetings, or a public event – ask for the captioning if you need it. The problem many people have is they think that “somebody should” do something about the lack of captioning – but that somebody is yourself.
Advocacy: From New Jersey to London
I started out with the CHC’s advocacy committee, ABC, as mentioned above. We were successful in bringing captioned live theater to London, on a groundbreaking “hearing accessible” trip to London in 2000, in cooperation with the Theatre Development Fund’s Theatre Access Program (TDF/TAP).
Now, the Hearing Loss Association of America (HLAA) is heavily involved in advocacy – and so is our HLA-NJ state association, where I just ended a five-year tenure as President. I also serve on the NJ Division of the Deaf and Hard of Hearing Advisory Council, and collaborate with them and other state agencies for captioning and other access needs. This resulted in getting CART captioning provided at state-run public events, and brought increased awareness about hearing loss where it otherwise would have been invisibly ignored.
I’ve also collaborated with the Theater Resource Unlimited (TRU), an organization of NYC theater producers, to spread the word to the theater community about the need for captioning. Online, I’ve joined with CCAC to provide input and support for captioning advocacy initiatives. Being connected by social media and internet forums is also very helpful in providing networking opportunities.
How You Can Change the Captioning World
Advocacy for captioning is ongoing, with opportunities always presenting themselves. When writing the bio for my book, Listening Closely, I made sure to mention my captioned theater advocacy, so that people would be aware that captioning of live theater exists and is possible, even if they didn’t get to read about it in my book. I’ve discovered that in advocacy, it all counts.
I’ve quoted from my book when doing presentations on hearing loss advocacy, “If the world doesn’t provide you with what you need, then you change the world.”
To learn more about Romoff’s advocacy and books, visit ArleneRomoff.com
Are you interested in making a difference in the captioning world? Join the Lipreading Mom Internet Captions Campaign.