Kathlyn Maguire’s personal story of significant hearing loss was the motivation behind her founding a charitable organization devoted to changing the way we think about one of our five senses. Her devotion to making a difference in the lives of young people is only topped by her energy in getting the job done. Kathlyn is one of those special people who care enough about others to dedicate her life and her considerable talents to improving our world. Because of the importance of this issue, especially as it relates to so many in our rock n’ roll audience, we have named Empowerment Through Hearing one of our Worthy Causes. Thirsty was fortunate to catch up with Kathlyn at her home in Florida for this interview.
THIRSTY: What made you decide to start a non-profit organization dedicated to educating students and the public about hearing loss?
Kathlyn Maguire: My own hearing loss was the reason behind the organization. I started to lose my hearing in my early teens, and I was very embarrassed about it – too embarrassed to seek the help I needed until decades later. It was easy to stay in denial because I could hear the volume of sound in speech; I just had trouble comprehending the words. I felt increasingly isolated and depressed before I found my own solutions. It was a painful journey.
I founded Empowerment Through Hearing in 2004 as a grassroots organization with a mission to help eliminate the stigma associated with hearing loss. Hearing loss was perceived as an old age disability and for the most part, nobody was talking about how to preserve and protect hearing health. I didn’t want anyone to experience the pain and denial I went through because of my lack of awareness. I believed that, once the public was aware of how prevalent hearing loss is among people of all ages, they would feel more comfortable coming forward for help.
The statistics are staggering: today, over 35 million Americans – including one in 8 students between the ages of 6 and 19 – have a significant hearing loss. It’s the #1 chronic birth defect. And, over 80% of those diagnosed with hearing loss don’t go on for additional help, usually because of embarrassment or lack of awareness. Those statistics and the fact that billions of dollars are lost annually in the U.S. due to untreated hearing loss make this condition a real threat to the well-being of America. The topic of hearing loss – much like breast cancer and mental illness years ago, needed to come out from behind closed doors
THIRSTY: Why did you choose to focus your efforts in the area of student hearing loss?
KM: We began to focus on students, teachers and parents to underscore the fact that hearing loss affects all ages, not just the elderly. We wanted to raise awareness that noise causes hearing loss and that noise-induced hearing loss (NIHL) is preventable. We commissioned a book, “Listen Up!” which has been incorporated into the curriculum of hundreds of classrooms. Administrators, educators, students, and parents alike have been very receptive to the book, especially in middle schools. In addition, we created a power point tutorial program for teachers, making the subject of Noise Induced Hearing Loss a lesson that they could present to their students.
With blaring iPods and radio speakers, rock concerts, ambulances, and motorcycles, hearing loss in America is now epidemic. Our program provides statistics and topics for teachers to use in the classroom, where students can learn about everyday causes of hearing loss and ways to prevent it.
THIRSTY: Your principle business career was in communications. How difficult was it for you to compete and be successful in that field as a person with significant hearing loss?
KM: As vice president of a public relations firm in Manhattan, it was a given that my time commitment was many times larger than that of my colleagues. In most every situation, it took me scores of additional work hours to be confident that I’d correctly understood and implemented the clients’ needs as they expressed them. What was extraordinary at the time was that for the most part business associates did not bring up or discuss my hearing loss, but they thoughtfully helped fill in the holes when I asked for help. It was definitely an “elephant’ in the middle of the room. They were aware of my embarrassment about this condition and they knew I was conscientious about my work. So I guess as long as I was able to do the work, it was not considered an issue.
THIRSTY: Apart from the physical context of hearing impairment, are there psychological issues associated with hearing loss?
KM: Absolutely. In fact, the psychological issues can lead to feelings of isolation, frustration, depression, and even suicide. Hearing loss steals our confidence, security, and independence. It’s devastating to continually miss the gist of conversations in your daily life. You don’t want to be different, but hearing loss can make you feel overwhelmed at every turn. You can’t hear the phone ringing or the doorbell, you miss instructions from your teacher or boss, whispers from a loved one, chats with friends. I felt so alone and depressed after my husband passed away that I considered suicide. He was my biggest enabler, and would fill in the awkward pauses with humor. He saved me at cocktail parties and filled in all the blanks. Afterwards, I began to believe I’d be better off to end my life, as opposed to living with silence and crippling depression.
THIRSTY: How does your message differ when you speak to children, their parents, or corporations?
KM: Well, hearing loss transcends age, gender, and race. The message is the same one for everyone: Noise causes hearing loss. And these past decades have seen an alarming increase in noise, so that noise-induced hearing loss has become a common condition in all age groups.
With children, we explain that loud noises can make you deaf, and that noise reduction ear plugs (foamies) protect ears from dangerous levels of noise. We point out that they can still hear the teacher, their friends or many sounds with foamies in their ears. We tell them that loud music in iPods can cause hearing loss. We tell them to turn it down now – so that they don’t have to turn it up in the future.
With parents, we caution them that hearing loss is the number one chronic birth defect, that babies and toddlers have very sensitive hearing. We also remind them to get their children’s hearing checked on a regular basis.
And when we communicate with the business community, we tell them that billions of dollars are lost annually in the U.S. due to untreated hearing loss. We encourage them to be supportive of employees with hearing loss by providing assistive listening devices as needed, like volume control and closed caption. Employers need to understand that hearing loss is a common condition in our workforce today. And where necessary, they will want to provide specialized headgear to protect against loud sirens, motorcycles, and construction. Employers should post warnings and be cognizant about noise induced hearing loss when and where employees are exposed to loud sounds. We also want them to consider sponsoring hearing health events. Support from the business community does much to spread awareness of this critical issue.
THIRSTY: You have launched a comprehensive informational approach to dealing with the condition and stigma of hearing loss, which includes a detailed website at www.hearingconnection.org, videos and a book entitled “Listen Up” for school-aged children. What has been the most effective transmitter of your message?
KM: Our website has been the most effective way for us to get the word out there. We’ve also included excerpts from Listen Up! online, public service spots with former astronaut Scott Carpenter, student PSA’s from our contest, a short hearing test as well as statistics on Noise Induced Hearing Loss. In addition, our website posts television interviews we’ve been featured in, as well as interviews published in newspapers and magazines. We also blog, tweet and are active on Facebook.
THIRSTY: Is the program you established in the Palm Beach County, Florida schools a model that school districts around the nation can use?
KM: Definitely! When teachers in the Palm Beach County School District log into TrainU, the district’s online learning system, they will get an earful. That’s because they will be learning about the alarming number of students who have hearing loss and how they can prevent it.
The “Listen Up!” TrainU presentation will soon be available to other schools in the country as an online learning system. It’s an interactive training tool that allows teachers to educate themselves about causes and prevention of student hearing loss and new information that is available to incorporate into their curriculum.
THIRSTY: How do you plan to raise the volume on the issue of hearing loss across the country?
KM: We’d love to increase our online presence and to secure a celebrity spokesperson, maybe from the music world, who could help us bring this message to our kids. Someone like Miley Cyrus, who is talented, young, and has a voice with the kids. Hopefully, someone will read this interview and will want to help us.
In addition, we’re developing plans for another book and a movie that will bring more attention to this issue. So please stay tuned.
THIRSTY: With the extraordinary advances in medicine through technology, is there anything on the horizon that will provide a revolutionary leap toward solving hearing problems?
KM: We thought Dr. Thomas Balkany, world-renowned otolaryngologist, who serves on our board, would be the best person to ask about that. Here’s what he answered:
"The cochlear implant, introduced in the 1980s was the first device to replace one of the five human senses and was revolutionary. Since that
time, most research was aimed at improving the CI. At this time, more attention is focused on stem cell and genetic treatment of deafness at the University of Miami Ear Institute. We believe that research will cure deafness, and human trials using auditory stem cells should begin within the next 5 years."
THIRSTY: Are there two or three simple tests that someone can do to determine if they might have hearing loss?
KM: If you answer “yes” to the following questions, you should have your hearing tested:
1. Do friends get annoyed because you misunderstand what they say and you need to ask them to repeat themselves?
2. Do you text more because you’re not comfortable with your hearing over the phone? When you’re on the phone, does it sound like people are not speaking clearly?
3. Do you have difficulty hearing someone who is behind you?
4. Do you often miss hearing the doorbell or telephone ring?
THIRSTY: What is your goal for EMPOWERMENT THROUGH HEARING in the next five years?
KM: We want everyone to understand that hearing loss is a simple human condition, like varying degrees of seeing; to be aware of the fact that noise causes hearing loss; and to be comfortable purchasing and wearing noise reduction ear plugs in loud environments. Much like everyone wears sunscreen to protect themselves against skin cancers, we want children and adults to know they can prevent hearing loss by reducing the noise in their lives. We’ve been planting the seeds of awareness for several years, and I hope in the next five that we reach the point where we no longer have to raise public awareness about this growing epidemic.