Advocate Award Speech by Arlene Romoff

The following is the acceptance speech text given by Arlene Romoff, for the Community
Health Law Project (CHLP) Ann Klein Advocate Award that she received on October 21, 2010

I’d like to thank  the Community Health Law Project for honoring me today with this Ann Klein Advocate Award.  Whenever I meet a new group of people, I always make sure to introduce myself – “I’m Arlene Romoff, president of the Hearing Loss Association of New Jersey, and I am deaf.  I’m using bilateral cochlear implants to hear and communicate.” 

I had normal hearing growing up - until I was a young adult - and then my hearing slowly declined, ultimately leaving me profoundly deaf  25 years later.  It’s then that I got my first cochlear implant in 1997, and went bilateral with my second one two years ago.

Hearing loss is an invisible disability that is often misunderstood, neglected and forgotten.  It’s often thought of as “no big deal” – but it is a very big deal.   Imagine if suddenly you couldn’t hear, or had difficulty hearing, even with hearing aids – how would you do your job, communicate, or even understand what I’m saying?  (Mouthing words . . .)

Most people understand the need for sign language interpreters – but the reality is that 98% of people with hearing loss don’t use sign language – but require Assistive Listening Devices and Captioning accommodations – as you see here.  With 10% of the population having a hearing loss – over 30 million Americans - and now 20% of teenagers – information about appropriate access is something that needs to be shouted far and wide!

My friend and colleague, Rosemarie Kasper, who is a wheelchair user and has a profound hearing loss, says that her hearing loss is her greater disability.  She always wants me to point out that there’s no use getting in the door if you can’t understand what is being said once you get there!  All too often, communication access – such as captioning and assistive listening devices – aren’t provided.  THESE ARE OUR RAMPS!

My advocacy efforts have focused on making sure that communication access is provided – so I spearheaded the movement to get open captioned live theater performances, starting in New Jersey in 1996, and now on Broadway, London and at regional theaters throughout the country.  We also have captioned movies in New Jersey at all multiplexes – more than any other state - but still at only one or two screens per multiplex.  And I continue to advocate and assist in access efforts at public events, in the workplace – and providing guidance to individuals and facilities.

In a quote from my forthcoming book, “Listening Closely,” (there’s a flyer here for you tonight) - I wrote:

“If the world doesn’t give you what you need, then you change the world.”

I wrote this book to change the world – to make people understand what it means to have a hearing loss – and the impact that it has on daily living.  And I also wrote it to educate about the miracle of cochlear implants. 

I hope you will read my book and tell others about it as well.  And maybe, just maybe, together - we can change the world.