Do You Qualify?

By Deanna Power

Hearing loss is one of the most common disabilities in the U.S., affecting 48 million Americans. If you or a loved one has been diagnosed with hearing loss, there could be help available. The Social Security Administration (SSA) offers financial benefits for people who are unable to work due to hearing loss.

There are two types of disability benefits someone experiencing hearing loss could qualify for: Social Security Disability Insurance and Supplemental Security Income. Medical qualifications will be exactly the same for both programs, but each have their own eligibility criteria.

The first type of disability benefits, Social Security Disability Insurance (SSDI) is awarded when an adult (ages 18-66) is no longer able to work due to hearing loss.

Only people who were previously employed and have been working throughout most of their lives will qualify for SSDI benefits. To find out if you have worked enough, you can determine whether you have earned enough work credits based on your age on the SSA’s website.

The second form of disability benefits is Supplemental Security Income (SSI). While there are no work requirements with SSI benefits, there are strict financial limitations. An adult SSI applicant cannot earn more than $733 per month.

For children applying for SSI benefits, parents’ income will be evaluated. The SSA is not as strict with household income limits evaluating children, but childhood SSI financial limitations are still difficult to meet. If you are married or have other children, your household income limit will be higher.

Medically Qualifying with Hearing Loss

When you apply for disability benefits with hearing loss, the SSA will compare the severity of your condition to its own medical guide known as the Blue Book. The Blue Book will list exactly how severe your hearing loss must be to be eligible for disability benefits. Hearing loss can be found in both the children’s and adult versions of the Blue Book.

The Blue Book listing for hearing loss is found in Section 2.10. For hearing loss not treated by cochlear implantation, you will need to have medical tests showing one of the following criteria:

• You have an average air conduction hearing threshold of 90 decibels or greater in your better ear. You also must have an average bone conduction hearing threshold of 60 decibels or greater.

• OR you have a word recognition score of 40 percent or less in your better ear.

If you’ve received a cochlear implant, you will be considered medically disabled by the SSA for one year after the surgery. After 12 months, the SSA will review your case. If you have a word recognition score of 60 percent or less determined using a specific test, you will still qualify. If your hearing has improved, you will no longer qualify for disability benefits.

A cochlear implant is only “automatically” disabling after surgery. Before surgery, you will need to meet one of the SSA’s other criterion.

The childhood listing is found in Blue Book Section 102.10. Children under age 5 will need to have an average air conduction hearing threshold of 50 decibels or greater in their better ear. Between the ages of 5 and 18, your child will need to have medical records showing one of the following:

• An average air conduction hearing threshold of 70 decibels or greater in the better ear, plus an average bone conduction hearing threshold of 40 decibels or greater.

• OR a word recognition score of 40 percent or less in the better ear, determined by using a standard list of phonetically balanced single-syllable words.

• OR an average air conduction hearing threshold of 50 decibels or greater in the better ear, plus a marked difficulty in speech and language.

If your child has a cochlear implant, he or she will be considered medically disabled until age 5 or one year after implantation, whichever is later. After your child turns 5, or 12 months pass since surgery, your child will need a word recognition score of 60 percent or less on the Hearing in Noise Test (HINT or HINT-C) to stay on SSI.

Applying for Benefits

If you are interested in applying for disability benefits due to your hearing loss, your first stop should be the SSA’s website. The SSA has guides outlining exactly what paperwork and personal information you’ll need to apply.

If you are applying for SSDI, you can complete the entire application online. This is the easiest way to apply for disability benefits, as you can save your application and return to finish it at a later time. Be sure to list your spouse and any minor children, as they could receive benefits as well if your SSDI application is approved. SSI applicants can only file for benefits at their local SSA office. Fortunately, there are multiple SSA offices in every state.

If you have not had one of the SSA-recommend examinations performed to evaluate your hearing loss, it is wise to speak with your audiologist and have one or all of the tests performed. The more medical records you have show how severe your hearing loss is, the better your chances of approval.

Deanna Power is the Director of Community Outreach at Social Security Disability Help. She first started working with people with disabilities by volunteering with Best Buddies in college, and now specializes in helping people of all ages determine whether or not they medically qualify for disability benefits. If you have any questions, she can be reached at drp@ssd-help.org.

Neural sensitivity to binaural cues with bilateral cochlear implants

By Massachusetts Eye and Ear/Harvard Medical School

Many profoundly deaf people wearing cochlear implants (CIs) still face challenges in everyday situations, such as understanding conversations in noise. Even with CIs in both ears, they have difficulty making full use of subtle differences in the sounds reaching the two ears (interaural time difference, [ITD]) to identify where the sound is coming from. This problem is especially acute at the high stimulation rates used in clinical CI processors.

 A team of researchers from Massachusetts Eye and Ear/Harvard Medical School, including past funded Emerging Research Grantee, Yoojin Chung, Ph.D., studied how the neurons in the auditory midbrain encode binaural cues delivered by bilateral CIs in an animal model. They found that the majority of neurons in the auditory midbrain were sensitive to ITDs, however, their sensitivity degraded with increasing pulse rate. This degradation paralleled pulse-rate dependence of perceptual limits in human CI users.

This study provides a better understanding of neural mechanisms underlying the limitation of current clinical bilateral CIs and suggests directions for improvement such as delivering ITD information in low-rate pulse trains.

The full paper was published in The Journal of Neuroscience and is available here. This article was republished with permission of the Massachusetts Eye and Ear/Harvard Medical School.

Dr. Yoojin Chung, Ph.D. was a 2012 and 2013 General Grand Chapter Royal Arch Masons International award recipient through our Emerging Research Grants program. Hearing Health Foundation would like to thank the Royal Arch Masons for their generous contributions to Emerging Research Grantees working in the area of central auditory processing disorders (CAPD). We appreciate their ongoing commitment to funding CAPD research.

We need your help supporting innovative hearing and balance science through our Emerging Research Grants program. Please make a contribution today.

Educating Children with Hearing Loss and Autism Spectrum Disorder

By Eric Sherman

Older Brother, Zach, Cole, and Eric (dad)

Gallaudet Research Institute’s 2009-2010 Annual Survey estimates that about 40 percent of children with hearing loss exhibit another disability and notes the prevalence of autism spectrum disorder (ASD) to be 1 in 59. Early intervention is critical for the development of speech, language, communication skills, and learning. Some families are fortunate to discover their child’s hearing loss at a young age so an early intervention program can be implemented to help their child stay on track with their hearing peers.

What happens when your child is diagnosed with profound to severe hearing loss at 6 months of age, receives his first cochlear implant at age 1½ (second at before his 5th birthday) and spends a couple of years in auditory-verbal therapy (AVT) or speech therapy, but is showing little to no progress?

This was the case with my youngest son. After receiving a second cochlear implant at 1½ and then two years of AVT, my son was nowhere near his hearing peers in communication and language skills. My wife and I knew language development could be a long process, but our gut was telling us that something else was wrong. Our auditory-verbal therapist advised us to seek additional medical evaluations to see if there was something else prohibiting our son’s language development. After having evaluations done, our son at almost 3 years of age was diagnosed on the autism spectrum.

Having a child with hearing loss takes lot of work. Add autism to the mix and it is like trying to solve a puzzle without knowing which pieces are in play.

With intensive behavioral and speech therapy over the years, our son, age 11, has done well. He has become more verbal and can certainly communicate his needs and wants. What is difficult is unlocking the doors into his learning style. There is this blurred line between his autism and hearing disability. When our son has difficulty doing schoolwork, we always question whether he is hearing the information, whether he has a problem processing the information, or whether he is just not interested in the material because it has no real meaning to his everyday life.

Our son has been lucky over the past three years having a teacher who is very creative and skillful in engaging her students. But this has not always been the case. My family’s experiences have taught us that the school district needs more information and training on how to educate a child with both hearing loss and ASD. Service providers need to know how to address each disability individually and collectively understand how they impact a child’s overall education. We have a school audiologist who wanted to create a goal for our son where he tells his aide or teacher when his CI processors are not working. This is a reasonable expectation for a child with hearing loss, but when ASD is added to the mix this may be difficult to achieve.

A child with ASD may have to be taught what it means for their processor not to be working, as well as what to do after they determine they are not working. Furthermore, generalization of whether the processor is “working or not working,” “broken,” or “on or off” may be confusing and difficult to understand. Our son believes his processor is “on” if his headpiece was attached to his head. Also, a child with autism may prefer the silence and not notify anyone their processors are off.

The dual diagnosis of hearing loss and ASD has been documented for the past 20 years; however, research and clinical guidelines on how to find and teach young children with this dual diagnosis are sparse. School professionals and educators need more tools and training to better equip the growing number of children afflicted with ASD and hearing loss. Both Advanced Bionics, which makes cochlear implants, and Illinois State University have done work on this issue, calling attention to the need for better diagnostic tools, early intervention, and training of education professionals. Still, significantly more needs to be done.

Eric Sherman is a father of two boys. In addition to advocating for his son and others, he serves as a parent representative on advisory boards on how special education and family support services are implemented in his local school district. To learn more about Eric Sherman visit ciwear.com/Ourstory/index.html

My Hearing Loss Journey

By Meghan Bayer

August 12th, 1996, I came screaming into the world. I had all my fingers and toes and my parents could not have been more proud of their “perfect” baby girl. I was (and still am) blessed by having two very loving parents,  and just over two years after my parents had me, they gave me the extraordinary gift of being a big sister.

Meghan (on right) with her dad and brother

As I went through my toddler years, I hit all my developmental milestones. Around the age of three and a half, my parents started noticing that I was always turning my right ear to the person speaking. Something wasn’t right. I was not reacting to sounds the way the typical hearing child should. My parents took me to my pediatrician who referred us to an audiologist. On September 28th, 2000, at the age of four, I was diagnosed with bilateral moderate-severe sensorineural hearing loss and immediately fitted with hearing aids. My dad and brother also have congenital hearing loss and wear hearing aids.

When I was first diagnosed, my parents’ worlds’ were shattered. My dad continued to be in denial and all my mom could do was hold me and cry. I think they felt I would somehow be limited in by abilities. As a way to recover and accept the diagnosis, we started taking family sign language classes which we all enjoyed.

My whole education, I have been mainstreamed in a private school. I had a very typical childhood; my mom drove me to soccer, dance, gymnastics… you name a sport and I have probably at least tried it. My days were filled with homework, playing outside, and evening swimming lessons. I was a well-behaved student that had earned the respect of all of the teachers, faculty, and staff. I maintained straight-A’s and regularly made the honor roll. At school, I had a hearing support teacher come in for a half hour twice a week during school hours to troubleshoot my equipment, review math skills, and occasionally play fun games.

In 5th grade, my family moved two hours away for my parents’ jobs. I didn’t know anyone and I was very shy. If someone asked me about “those things on my ears” I would stare at the floor silently.

Everything was different. I had a locker now, a bunch of teachers that didn’t fully understand my needs, and a new hearing support teacher. I lived in a new city and making friends seemed like an impossible task. I had to deal with my first real bully who would he call me names and physically abuse me.  When I defended myself from getting hit by a hockey stick, I got detention.

Through the years, my hearing became progressively worse until I was profoundly deaf in my left ear and so I was implanted with bilateral cochlear implants during the summer of 2010.  With intense therapy, I successfully learned to hear. I was constantly amazed at my new hearing world. With the increased ability to hear, my academic success improved dramatically and my confidence soared. I received my second implant just days before starting my freshman year of high school.

In order to fulfill my school’s foreign language requirement, they offered to let me take ASL. I politely declined and stated that I would be taking French. I was at or near the top of my class all four years of French. My sophomore year, I was given the French II Award for the highest academic average in my class. This goes to show that if you work hard, anything can happen!

Hanging out with friends, homework, community service and year-round basketball ruled my life. I was inducted into the National Honor Society, served as the president of the school’s service club, and enjoyed helping out with school events. By my senior year, I had over 800 service hours and I was awarded my high school’s highest honor for my scholarship, character, and service. I graduated with highest honors, a varsity basketball letterman, and as a member of the National Honor Society.

Today, I can confidently tell you that hearing loss will never be an excuse for me or any of my family members. My present goal is to earn my degree in Communication Rhetoric, minor in the Administration of Justice, and obtain a certificate in National Preparedness and Emergency Management. It sounds like a lot, but I’ll get it done because there are no excuses!  While I am by no means fluent, I do attend our ASL club on campus and continue taking classes.

Looking back on the journey, I am thankful that my speech was completely unaffected by my severe inability to hear during the prelingual period. I am grateful to my parents and I would not be where I am today without the help of each and every single person on my journey.

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Want to share your hearing loss story with our community? If so, email us at info@hhf.org! 

We hope to hear from you soon! 

Brush with Hearing Loss Inspires Young Artist's Vision to Help Others

WESTPORT — A young artist appealed to people’s sense of sight at his first solo art show Saturday to raise funding for research to cure hearing loss.

Alex Mussomeli, 11, a student at Long Lots School, who uses a Cochlear implant in one ear and a hearing aid in the other, sold 51 of the 54 acrylic paintings he displayed in the show, titled, “The Wonder of Art Exploration!” It raised approximately $16,000 for the New York City-based Hearing Health Foundation. According to the HHF website, it is the largest non-profit funder of hearing research and its aim is “to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health.”

“Our mission is to fund research through a consortium of scientists to find a cure for hearing loss. We have a Hearing Restoration Project,” said Roger Harris of New Canaan, an HHF board member, who attended Alex’s art exhibit at the Fairfield County Hunt Club.

Harris said Alex is “a very gifted young man,” and he is impressed with the boy’s philanthropic efforts. “It was his idea to have this show. To have someone at his age be so socially aware is really amazing.”

“This is my first time exhibiting. It feels pretty special and exciting,” said Alex, who worked for a year to produce his colorful paintings, prints and notecards, many of them with floral and spring themes: “Enchanted Flowers,” “The Tulip Playing the Note,” “The Dreamy Sunflower,” “The Bright Butterfly” and “A Spring Dream.”

“They’re full of life and my happiness,” he added, observing that painting is “my favorite thing to do.”

“Spring after the Storm” was fifth-grade classmate Caroline Motyl’s favorite. “I like the name and the color best because I think it’s really creative,” the 10-year-old said, adding that Alex’s project is “a really brave thing to do. It’s nice because he’s helping other people,” she said.

Alex said he was inspired to use his artistic talent for a good cause after seeing a “CBS Sunday Morning” story about a legally blind artist, Jeff Hanson, who has raised $1 million for charities like the Make-a-Wish Foundation and a children’s hospital through the sales of his paintings.

“I felt like ‘Why couldn’t I do the same for hearing so other kids like me can hear?’ I like to talk to my parents about my day and listen to music,” said Alex.

Alex with Roger Harris

Nada Mussomeli, Alex’s mother, said he was 3 months old when his hearing loss was detected in both ears due to an enlarged vestibular aqueduct, an inner-ear malformation. He received a Cochlear implant in the right ear when he was 3 years old and also has a hearing aid in his left ear.

“My parents wanted me to be mainstreamed so I got a hearing aid, but we learned that the implant is stronger,” Alex said.

Alex uses his senses of hearing and vision as he paints. In his artist’s statement Alex said, “Sometimes I get inspired by something I see.” He also listens to music, sometimes relaxing and sometimes stirring compositions. “I like music full of expressions. I always have music on when I paint.” Ideas dance in his head as his brush dances on the canvas, he said.

Hundreds of people turned out for Alex’s show, among them John Hansen of Fairfield, who said he appreciates the young artist’s use of color, diversity within in the field of plant life and positivity.

Family friend Carol Mueller of Westport said Alex “is an inspiration to all who know him. Alex loves art and enjoys visually expressing his optimism through his painting.”

Nada and Adam Mussomeli said they could not be more proud of their son. Nada Mussomeli said she is inspired watching him do his art and enjoy every minute. “It was a journey.” She also said her dream is that a cure for hearing loss is discovered in her lifetime, but if not in hers then in Alex’s.

This article originally appeared in Westport News on April 12, 2016. It was repurposed with permission. 

Proud Grandparents

By Darel Sorensen, Ed.D.

When our grandchild Mikaela, now 15, was born, newborn hearing screening was not yet an option at their hospital in California. She was diagnosed with a sensorineural hearing loss at age 23 months, after we noticed she had delayed speech.

At age 2 she began attending an “early start program” and preschool at age 3. Two years later Mikaela was joined in preschool by her younger brother Christian Joseph (CJ), now 13. He had passed the newborn screening test, but by age 2 1/2 he began to lose his hearing. After an alert teacher suggested testing, CJ was also diagnosed with sensorineural hearing loss.

To attend school, Mikaela and CJ traveled for one hour each day. The bus ride is a long one for kids who are toddlers, but our anxiety was tempered knowing that Mikaela and CJ would be getting specialized assistance with their hearing, speech, and language skills as well as learning how to sign. It would help prepare them for mainstream school classes.

Before she was 3 years old, Mikaela had cochlear implant (CI) procedures in both ears. A few years later, also at age 3, CJ also received a CI for his left ear and a hearing aid in his right.

Since the deaf and hard-of-hearing (DHOH) program in their school district spans kindergarten through high school, they have benefited from learning communication and coping skills from the same DHOH and speech-language therapists as they got older. They know to ask to sit on the side of the classroom, so they can more easily rotate to face whoever is speaking, and to be specific about what part of a conversation they missed when asking for something to be repeated.

Mikaela and CJ - 2 1/2 and 1 years old

Thanks to this consistent help, Mikaela and CJ were able to be mainstreamed into their local schools. Now in middle school, CJ has tried his hand at sports and now plays clarinet in the marching band; he was also selected to play in the concert band. Mikaela has played on the school basketball team for four years and received this commendation from her DHOH specialist:   

“Mikaela exudes confidence in class, never shying away from raising her hand, offering her insights, speaking up about her ideas and opinions. She advocates for herself by talking with her teachers about what works best for her. She is energetic, personable, and hardworking. In addition to her own success, she looks out for her fellow hard-of-hearing peers in order to help them succeed as well.”

Recently there was talk that the DHOH program may be moving from its current locations. Mikaela was quick to contact the administration to tell them how much the program meant to her and to her success: “Both DHOH and mainstream teachers… helped me understand everything, and now I’m a straight-A student because of them,” she wrote.

“The DHOH campuses are safer, friendlier, and better than most schools…. If you move the program you’ll be losing the teachers, staff, and students who treated us like family [and] the hearing students at those schools will be losing the ability of learning another language (sign language) and being friends with the deaf. PLEASE KEEP THE PROGRAMS WHERE THEY ARE!! Thanks for reading.”

These steps toward self-advocacy, as well as their self-confidence and concern for others, will serve them well. We could not be more proud. We wanted to share this story about our grandchildren because we believe in HHF and its mission of research, education, and prevention of hearing loss.

Darel Sorensen, Ed.D., is a retired educational psychologist and director of special education services. He lives with his wife, Betty, in California. 

Engineering Music to Sound Better With Cochlear Implants

By Columbia University Medical Center

When hearing loss becomes so severe that hearing aids no longer help, a cochlear implant not only amplifies sounds but also lets people hear speech clearly.

Music is a different story.

“I’ve pretty much given up listening to music and being able to enjoy it,” says Prudence Garcia-Renart, a musician who gave up playing the piano a few years ago.

“I’ve had the implant for 15 years now and it has done so much for me. Before I got the implant, I was working but I could not use a phone, I needed somebody to take notes for me at meetings, and I couldn’t have conversations with more than one person. I can now use a phone, I recognize people’s voices, I go to films, but music is awful.”

Cochlear implants are designed to process speech, which is a much simpler auditory signal compared with music. People with severe hearing loss also have lost auditory neurons that transmit signals to the brain.

It’s not possible to tweak the settings of the implant to compensate for the loss of auditory neurons, says Anil Lalwani, MD, director of the Columbia Cochlear Implant Program. “It’s unrealistic to expect people with that kind of nerve loss to process the complexity of a symphony, even with an implant.”

Instead, Dr. Lalwani and members of Columbia’s Cochlear Implant Music Engineering Group is trying to reengineer and simplify music to be more enjoyable for listeners with cochlear implants. “You don’t necessarily need the entire piece to enjoy the music,” Dr. Lalwani says. “Even though a song may have very complex layers, you can sometimes just enjoy the vocals, or you can just enjoy the instruments.”

Right now the group is testing different arrangements of musical compositions to learn which parts of the music are most important for listener enjoyment. “It’s not the same for somebody who has normal hearing,” Dr. Lalwani says, “and that’s what we have to learn.”

Down the road, Dr. Lalwani thinks software will be able to take an original piece of music and reconfigure it for listeners or give the listener the ability to engineer their own music.

“Our eventual goal, though, is to compose music for people with cochlear implants based on what we’ve learned,” Dr. Lalwani says. “Original pieces of music that will possibly have less rhythmic instruments, less reverb, possibly more vocals—something that is actually designed for them.”

The study is titled, “Music Engineering as a Novel Strategy for Enhancing Music Enjoyment in the Cochlear Implant Recipient.” The other contributors are: Gavriel D. Kohlberg, Dean M. Mancuso, and Divya A. Chari.

This blog was reposted with the permission of Columbia University Medical Center. 

Anil K. Lalwani, M.D. is the Head of Hearing Health Foundation's Council of Scientific Trustees.

Sports Life in Silence

Chase Ross and his wife, Amy

The crowd is roaring, cheerleaders cheering, coaches are yelling and teammates are making play calls. As hearing impaired athletes, my sister and I did not necessarily hear all of this. Growing up in a small town atmosphere and loving sports, teammates and coaches found ways to communicate with us to ensure we were part of the team, part of the family, by making sure he/she was standing next to us when talking or giving us hand signals during play.

My sister and I were very fortunate to have a close, caring, understanding and loving family to help guide us through life. But they made sure we had to work for everything we earned and did not take anything else in life for granted, much less our hearing. My sister, who has cochlear implants, provided me with a great example of how not to let our hearing loss keep us from doing anything we dreamed. Growing up she was very active with sports. Even as she went on to college, she was a football cheerleader while earning her degree.

Growing up I had a strong passion for playing sports – football, basketball, baseball and track. Sometimes the sweat would get into my hearing aids causing them to not work correctly and I would still have to play parts of games without hearing – relying solely on reading lips and using hand signals that our team had put together for such cases. It was a challenge that my teammates had recognized. That is when you learn to connect with friends, family and teammates on a new level.

To help bridge that gap, last year I founded Sports for Sound, a non-profit entity designed to raise funds and help hearing impaired patients who need financial assistance with obtaining new hearing aids, molds, FM systems for the classrooms or whatever his/her needs may be. After making appointments with my audiologist and needing new hearing aids for the first time since I have been on my own, it hit me how costly they can be, even with insurance. This is what motivated me to want to help those who may need assistance.

To help better educate the participants with hearing and show them why hearing is truly important, participants in the running events must wear ear plugs. This helps the participants better understand what hearing impaired people go through and how much we need to rely on our other senses.

Our first year (2014) was dubbed a success raising over $23,000 and providing assistance to 10 applicants. In 2015, 2015 we raised $18,000 & we were able to provide new hearing aids to 8 recipients. Sports for Sound is having its 3rd annual event on May 21st, 2016 at the Eastern Ohio Sports Complex in Sherrodsville, OH. The event is held in May to coincide with “Better Hearing & Speech Month.” This year our event will feature a 5K obstacle run, 10K road run and 5K cross country walk. The event will also have food, raffles, silent auction and a Chinese auction.

Chase Ross is the founder of Sports for Sound. His goal is to grow SFS to help assist hearing impaired patients beyond its established location, Tuscarawas County, OH., all while giving participants the experience of being hearing impaired while participating in SFS events.

Hearing Loss vs. Dizziness: If I Could Choose!

By John V. Brigande, Ph.D.

I was about 9 when hearing loss in my left ear was first detected. The audiologist explained to me that as a result, I may not be able to hear birds singing as easily, and that I may need to concentrate more to understand words starting with “sh,” “k,” or “t.” Sensing my alarm, she tried to reassure me by saying it was unlikely that the hearing loss would affect both ears, and if it did, it would likely not be to the same extent.

Managing the loss of a primary sense is all about adaptation. In grade school, I simply tilted my right ear toward sound sources. Over time my hearing loss became bilateral and progressive, and its cause remains unknown. In graduate school I began using hearing aids and later received a cochlear implant in my left ear. I continue to use a hearing aid in my right ear, and thankfully for the past eight years, my hearing has remained stable, if stably poor.

I have always compensated. At Boston College (where I received my undergraduate, Master’s, and Ph.D., all in the biological sciences) I sat in the front seat of my classes, as close to the speaker as possible. I asked my professors and classmates to face me when they spoke so I could use visual cues to enhance oral comprehension. During postdoctoral training in auditory neuroscience at Purdue University, I was given complimentary assistive listening technology upon my arrival to the lab.

While I do not consider my hearing loss to be a profound limitation personally or professionally, it has certainly sculpted my career path. When picking my area of scientific focus, I settled on a career in auditory neuroscience to better understand hearing loss.

I also reasoned that the auditory research conferences and meetings I’d be attending would likely have assistive listening technology to allow me to participate more fully. I have benefited immeasurably from the scientific community that makes up the Association for Research in Otolaryngology, whose meetings have world-class assistive listening technologies and interpreter services plus overwhelming support of members who have hearing loss.

As I entered my 40s, I experienced vertigo for the first time. The clinical data do not fit with a diagnosis of Ménière’s disease, and the link between my vertigo and hearing loss is unclear.

When I have an acute attack of dizziness, my visual field scrolls from right to left very quickly so that I must close my eyes to avoid profound motion sickness and vomiting. I must lie down until the dizziness subsides, which is usually 12 to 16 hours. I honestly cannot do anything—I can only hope to fall asleep quickly.

Vertigo is a profound limitation for me. With no disrespect or insensitivity intended toward the hearing impaired community—of which I am a passionate member—I would take hearing loss over vertigo in a heartbeat. Dizziness incapacitates me, and I cannot be an effective researcher, educator, husband, or father. Some people perceive an aura before their dizziness occurs, but I do not get any advance warning. Unlike hearing loss, I cannot manage my dizziness—it takes hold and lets go when it wants to.

I recall one episode especially vividly. I was invited to give a seminar at the National Institute on Deafness and Other Disorders (NIDCD) and experienced a severe attack just hours before my flight. Vertigo forced me to reschedule my visit, which was tremendously frustrating. That night, I slept in the bathroom (my best solution when vertigo hits). Vestibular (balance) dysfunction is quite simply a game changer.   

A satisfying part of my research involves trying to define treatments for hearing loss and dizziness. Usher syndrome is a condition combining hearing, balance, and vision disorders. In Usher syndrome type 1, infants are born deaf and have severe vestibular problems; vision abnormalities appear by around age 10. In working with a group of dedicated colleagues at various institutions, we have evidence that fetal administration of a drug in mice with Usher syndrome type 1 can prevent balance abnormalities.

As part of HHF’s Hearing Restoration Project (HRP) consortium, I have been working on testing gene candidates in mice for their ability to trigger hair cell regeneration. This research is exciting as it is leading the HRP into phase 2 of its strategic plan, with phase 3 involving further testing for drug therapies. The probability is that manipulating a single gene will not provide lasting hearing restoration, and that we will need to figure out how to manipulate multiple genes in concert to achieve the best therapeutic outcomes.
It is an exciting time to be a neuroscientist interested in trying to find ways to help patients with hearing loss and balance issues. I am hopeful that we will make progress in defining new ways to treat and even prevent vertigo in the near future and ultimately to discover a cure for hearing loss and tinnitus.

Hearing Restoration Project consortium member John V. Brigande, Ph.D., is a developmental neurobiologist at the Oregon Hearing Research Center. He also teaches in the Neuroscience Graduate Program and in the Program in Molecular and Cellular Biology at the Oregon Health & Science University.

Your financial support will help ensure we can continue this vital research in order to find a cure for hearing loss and tinnitus in our lifetime. Please donate today to fund the top scientific minds working collaboratively toward a common goal.For more information or to make a donation, email us at development@hhf.org. 

Your help provides hope.

Handicapable

By Kate Yandell

Dominic Pisano hadn’t even arrived on campus to start his freshman year at Johns Hopkins University when he got his first email from biomedical engineer Tilak Ratnanather. He had heard Pisano was deaf and wanted to meet with him. Ratnanather, who has been deaf since birth, showed up for the meeting accompanied by a second deaf student who would later become a doctor. “He was, like: ‘Here’s my deaf army,’” Pisano recalls.

Soon, Pisano, a soccer enthusiast from Ohio, was interpreting magnetic resonance imaging (MRI) in Ratnanather’s department. When Pisano decided he wanted to go to medical school, Ratnanather was ready to introduce him to his wide network of friends in the otolaryngology department at Hopkins. Pisano assisted in MRI research at Hopkins for a year before attending Tufts University School of Medicine in Boston.

“I’ll be honest with you, if it weren’t for Tilak I probably wouldn’t have gone to medical school,” says Pisano, now a resident in anesthesiology at Tufts Medical Center. “I probably wouldn’t have done biomedical engineering research. Most importantly, I probably wouldn’t have the kind of network I have.”

Photo: Tilak Ratnanather

Courtesy Johns Hopkins School of Medicine

It was this kind of service that won Ratnanather the Presidential Award for Excellence in Science, Mathematics, and Engineering Mentoring this past March. Over the years, Ratnanather has lobbied for better resources for deaf attendees at conferences, organized annual dinners for deaf researchers, helped award scholarships to hearing-impaired students through the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell), and mentored more than a dozen hearing-impaired students.

“He’s by nature the most gregarious and extroverted individual,” says Howard Francis, a professor of otolaryngology at Hopkins who has known Ratnanather for 23 years. “He has a sense of mission and is committed to making it possible for others to achieve what he has achieved.”

“A lot of people have a hard time understanding him [due to his deafness-related difficulties with speech],” says Pisano, “but despite that, they still enjoy his company, and they want to be connected with him.”

Ratnanather was born in 1963 in Sri Lanka with profound hearing loss of unknown origin. His family moved to London when he was 18 months old, and he grew up wearing hearing aids and attending the Mary Hare School for Deaf Children.

Ratnanather’s parents, a pediatrician and a computer systems programmer, had high hopes for their son. “My father and I would talk about mathematics and would go through some problems at home,” he says. “I had an aptitude, and then, of course, I would go to the science museum and learn about famous mathematicians.” Ratnanather enrolled at University College London, where he met mathematician Keith Stewartson, who immediately made the young undergrad comfortable about his hearing loss and the assistive technologies he needed to use in the classroom. “I knew he would make my life easy,” says Ratnanather. “I didn’t have to worry about my deafness.”

Tragically, Stewartson died suddenly at the end of Ratnanather’s first year at university. But the young student forged ahead, and after doing some reading about Stewartson’s research on fluid dynamics, Ratnanather went on to study the subject in graduate school at the University of Oxford, receiving his D.Phil. in mathematics in 1989.

Up until that point, Ratnanather had only had occasional opportunities to learn about an area near to his heart: hearing research. This changed after he attended a research symposium at the 1990 AG Bell Convention in Washington, D.C. Fascinated by the work of William Brownell, Ratnanather approached the Johns Hopkins researcher after Brownell had given a talk about outer hair cell electromotility—the process by which these sensory cells shorten or lengthen in response to electrical impulses.

When outer hair cells change shape, they transmit mechanical force to the cochlea, amplifying the ear’s sensitivity to soft sounds at specific frequencies. Forces transmitted through pressurized fluids in outer hair cells make electromotility possible, explains Brownell, who is now at Baylor College of Medicine in Houston. He needed someone who could model the dynamics of fluid within these tiny spaces. “Tilak had the computational tools to begin to study this,” Brownell says.

Ratnanather began a postdoc in Brownell’s lab in 1991. During his postdoc, he realized he could bestow upon students the confidence his mentors fostered in him. The Internet helped him reach out to other deaf people through newsgroups. Lina Reiss, who had severe hearing loss by age 2, first met Ratnanather when she was an undergraduate at Princeton University and he replied to an online post in which she introduced herself to one of these newsgroups.

The daughter of two Ph.D.s, Reiss had always known that she wanted to go into the sciences. But she was not sure what career would be possible with her hearing loss. “I didn’t have any role models of what it was like to be a deaf faculty member,” she recalls. “Until I met [Tilak and some of his deaf friends], I couldn’t imagine becoming a professor.”

Ratnanather helped get Reiss a summer internship in the hearing-research lab of a colleague at Johns Hopkins, where she studied how neurons in the brain stem encode and process sound. Enthralled with the research, she went on to do her Ph.D. in biomedical engineering in the same lab. She is now an assistant professor at Oregon Health & Science University in Portland researching how hearing loss, hearing aids, and cochlear implants influence the way people perceive sound.

Ratnanather now primarily does brain-mapping research focused on understanding how brain structures are altered in people with diseases such as schizophrenia, Alzheimer’s, and bipolar disorder. But hearing science continues to influence his work. He has published several recent studies on fluid dynamics and hair cell function and has upcoming papers on imaging the auditory regions of the brain in deaf adults and babies.

And, spurred partly by his own cochlear implant surgery in 2012, Ratnanather has created an app for adults learning how to hear following the surgery. Called Speech Banana, the app is named after the banana-shaped region in an audiogram that contains human speech.

More than just providing professional connections, Ratnanather has influenced how his former students navigate the world. Being deaf can make it scary to think outside the box or challenge opinions, Pisano says.  Ratnanather encourages his mentees to keep an open mind and engage with others—hearing and nonhearing alike. “That helped shape my mentality about life in general today,” Pisano says.

Reprinted with permission. "Handicapable" originally appeared in the October 2015 issue of The Scientist, a special issue devoted to hearing research. The article can be accessed online here. See also The Scientist’s Facebook page, where this article generated many comments.

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Hearing Health Foundation is thrilled that Tilak Ratnanather, D.Phil., received this outstanding honor and recognition from the White House for his mentoring efforts. Ratnanather was a recipient of an Emerging Research Grant (ERG) in 1993, and has continued to champion HHF and its mission to prevent and cure hearing loss and tinnitus.

Dominic Pisano, M.D., who is quoted in this article, served on HHF’s inaugural National Junior Board (now known as HHF’s New York Council) in 2012. He has written about his decision to get a cochlear implant (CI) on our website and the tips and tricks he used to succeed in medical school in our magazine, and he appeared in an HHF public service announcement.

Also quoted in the article, Lina Reiss, Ph.D., was an ERG recipient in 2012 and 2013, and went on to win funding from the National Institute on Deafness and Other Communication and Disorders. She cowrote a piece about hybrid CIs and the way they make use of residual hearing ability. HHF congratulates all for their achievements!