Need Help?

Interview with Pearl from

The Say What ClubPearl got in touch with me recently and let me know about – she is a long-standing member of the club and editor of their newsletter. I asked if her if she would answer a few interview questions via email and let us know what the club is all about.

Steve: Before we talk about the SayWhatClub, tell us a bit about yourself?
Pearl: My name is Pearl and I am hearing impaired for what seems forever. I always had difficulty hearing in school. My parents were told that I was smart but “lazy” and that I wasn’t “paying attention.”. My response to that was always, “what the heck do they know?”.

When I entered sixth grade, I failed a hearing screening test and my adventures with hearing loss really began. I was told I had otosclerosis and had a stapedectomy done in my late teens only to have been hit by a car three months later, and lost all the hearing in my good ear. I tried several hearing aids over the years and was very disappointed. In fact, I was a terrible role model for the hearing aid industry. At that time, I did not know why I was disappointed, but understood it better as I became more involved in my working with the hearing impaired/deaf communities.

Due to my hearing loss, I decided to to work within the field of deafness or hearing impairments as I felt connected.
As a Social Worker, I worked in various areas of deafness. First in a large deaf/blind vocational rehabilitation center, then for a School for the Deaf and then finally, for the NYC Dept. of Education. I work mainly with children who are Deaf/deaf, hearing impaired, and/ or blind/visually impaired. I am part of the evaluation team that tests and manages these student’s cases. From intake through the recommendation of services to writing up the Individual Educational Plan so that the student will be ready for the classroom setting. While I worked for the Dept of Education, I met some wonderful Audiologists who gave me good advice and I began wearing a well fitted aid.

Steve: Tell us about the SayWhatClub? When did it start? What is its mission? How many members do you have and are they all from the USA?
Pearl: The SayWhatClub (SWC) started officially around 1997. However, back in 1992, the founders of SWC were on a bulletin board for deaf and hearing impaired individuals and several of them began communicating off the list. Eventually the group of friends became larger and more unmanageable because of the numbers participating. The idea of a listserv came up, was started and the rest is history.

SWC is a not for profit Internet based organization run by volunteers for people with hearing loss or late deafened or people interested in hearing loss issues. We have a membership of approximately 400 people of which about 20 % are internationals. We have 8 lists of which one is for people interested in, thinking of or have C.I.’s. Each list has its own personality. The membership consists of everyday people. We have writers, artists, engineers, lawyers, psychologists, housewives, dog walkers, cat lovers, librarians, teachers, young people (18 plus) and older people, all who have gone through the hearing loss experiences.
We don’t just discuss hearing issues though that is what brings us together. What happens is that we are able to discuss things on the list that we are just not able to do in public at a party, for example.
However, we do encourage each other concerning when our hearing issues effect us on our jobs, home front, friendships and the environment as a whole.

We also have something called “flings.” Several members in a state may decide to gather and party. These are informal gatherings. Then we have whats called “Cons” short for convention obviously. Every year we have a convention in a different part of the United States. Last year it was held in Las Vegas. This year it will be held in Philadelphia in July. We have morning workshops and then spend the rest of the time touring the city or just hanging out with new friends.

Families are always welcomed.

We provide CART (real time captioning) for all our meetings and workshops as well as a Sign Language Interpreter.

Steve: What do you feel that people gain from being a member?
Pearl: Well for me, it meant feeling less isolated, knowing others feel as I do, and having a discussion without saying “what?”….
I truly believe most members gain some confidence from being able to relate to others who are in the same situation. The I’ve been there and done that experience.
We also have a wonderful online newsletter that provides some great info, personal stories, news events, and an audiologist corner.
I guess what people gain is an enormous feeling of relief once they realize they are not alone. There’s a feeling that its okay to be hearing impaired or late deafened and that we are just as entitled as the “hearing” person.

Steve: What does the future hold? Does the club have any plans for 2008 and beyond?
Pearl: I wish I had a crystal ball that would give us the answer to what the future holds? Well, I hope that people who are hearing impaired or late deafened will join us and help themselves by taking the steps needed to cope with their hearing loss. I would hope that we can also forge alliances with the deaf/Deaf communities so that we can come to terms with our similarities as well as differences. Though we are different communities, we share similar problems. SWC is one of several online groups that wants to bring people together.
Concerning our goals for 2008? Well, the computer is clearly the future and technology is getting faster and smarter than we ever imagined. We’re looking at starting a blog in the near future so that bloggers can read up on events happening on SWC as well as in the hearing impaired/deaf world. We want to provide information that’s needed for our membership and our readers.

I feel the most important thing for us is having the information in our hands. The more we educate ourselves about hearing aids, CI’s, cellphones, assistive listening devices, alarm systems, etc, the less problematic our lives will be. We have to take responsibility for obtaining the info needed and that’s where SWC can help as well. Isn’t better communication what we strive for? Being heard and hearing or understanding what is being said? SWC has done all of this for me.

Thank you very much to Pearl for taking the time to answer my questions. I will be joining the SayWhatClub and I hope you will too – you can get more info about joining by sending an email to info <at> or going to