Prof. Joseph Montano, Ed.D., is a professor of audiology in clinical otolaryngology and the director of the Hearing and Speech Center at Weill Cornell Medicine. He talks about of hearing loss and advocacy in the community and communication access for all people.
Interview conducted by Ivanhoe Broadcast News in November 2021.
I wanted to start by asking you a little bit about Toni. When you first met her, and what your impressions were?
PROF. MONTANO: I remember very early on meeting Toni. One of our first conversations was about advocacy. She was a remarkable person with hearing loss and had many personality traits I felt could contribute to her becoming a leader in the hearing-impaired community. One of the things we talked about was the ability for her to become a hearing coach. There was a program at Gallaudet University that I suggested she look into, and she, in fact, did that. She attended Gallaudet for coaching. The idea was for people who had hearing loss to help other people with hearing loss. One of the goals is to create advocates and supports for people learning to adjust to living with hearing loss.
How would you describe her to other people?
PROF. MONTANO: She’s bright, articulate, a true believer in communication, and a true believer in access for people with hearing loss. She is someone that has become a friend of mine over the years. She’s sort of my go-to person when I need someone to talk to patients who are learning to adjust to life with hearing loss.
Do people really understand what’s happening when someone starts to lose their hearing?
PROF. MONTANO: I have to say that hearing loss is misunderstood. Part of the problem is because most people are not deaf. Most people have hearing, their hearing just isn’t within the normal range, but they still have hearing and in many situations are able to communicate effectively. But life is complex, and life is not a quiet room. People with hearing loss are often in situations where there might be background noise or more than one person speaking. It’s in these situations where most people with hearing loss begin to break down and their communication ability begins to suffer. There seems to be a better understanding about deafness. Deafness is a very small percentage of the people with hearing loss. Most people who have hearing loss are not Deaf. Most have hearing loss of mild to moderate to moderately severe ranges and not total deafness. But if someone with profound hearing loss were to come for an appointment and they use sign language, we would immediately, arrange for a sign language interpreter. It just happens automatically. There seems to be a better understanding of deafness and not as good an understanding of hearing loss.
How does that impact people in the community?
PROF. MONTANO: The impact is significant. There are many people who don’t even realize they have hearing loss, especially older adults. When they begin to lose hearing, it happens very gradually over many years so, as hearing loss is deteriorating, it is perceived as their normal hearing. It’s not a concern until they begin to experience difficulties in listening situations, or family members begin to complain that they’re not hearing conversations. This is likely due to hearing loss. One of the things that I’ve said a lot to many of my patients when counseling them about hearing loss is that they probably had this hearing loss for 10 years or more. If however, they had normal hearing and then woke up and their hearing was different, they would be in a panic. But, because it’s happened so slowly over so many years, they didn’t even realize it.
Can you speak on how you talk to your clients and patients about the emotional part of hearing loss?
PROF. MONTANO: Hearing impairment is much more complex than just the idea putting a hearing aid in your ear and saying, “Everything is going to be fine.” That just doesn’t happen. When a person experiences hearing loss, there are many possible issues that can be associated with it. We frequently see that people begin to isolate themselves. They begin to disengage from communication. For example, they could be at a party, sitting at a table with a group of people and have a smile on their face as if they’re understanding everything that’s going on at the party. In reality, they’re missing a good percentage of it, and they’re acting like they understand it. So, there’s been a lot of recent research on the isolation, disengagement, and depression and about the relationship between cognition and hearing. We do know that there is a relationship between hearing loss and cognition, and we do see that people with more significant hearing loss tend to have more problems. Research continues in this area. Hearing loss is a serious issue, and it’s something that we don’t really consider. If you look at the number of people who wear hearing aids compared to the number of people who have hearing loss, we would probably reach about 20 to 25 percent of those people.
What can you suggest for patients who are having these feelings of isolation or depression as a result? How do you work to the next level or beyond?
PROF. MONTANO: The whole idea is that we have to be able to communicate with our patients and their families. We have to be able to talk to them and understand how they feel and address the issues. If there is a patient with clinical depression, it’s more than just feeling upset about the fact that they have hearing aids, sometimes we need to refer them to mental health professionals. But what we’re trying to do is listen to the patient’s story. I have the patient tell me about their hearing, about their interactions, about how they communicate with their family and friends, and then, I ask them how they feel about their hearing loss. Sometimes, people will say they feel depressed, or they feel upset. I use something called a self-assessment scale where I ask them to assess their ability to communicate. It goes beyond what the hearing test tells us. So, when somebody has a hearing test it’ll identify the fact that they’ve got a hearing loss, but it doesn’t identify the issues that occur as a result of that hearing loss.
Do you know the percentage of people who have hearing loss?
PROF. MONTANO: The numbers are staggering when you think about it. As a person gets older, the likelihood that they’re going to develop hearing loss increases. The numbers vary depending upon what research you read. But they do show that as people age, the incidence of hearing loss increases and could be upwards of 75 to 80 percent of people in their 80s and 90s who have hearing loss. One of the problems about the way some of the surveys are taken to find out if people have hearing loss, is that they ask the person if they have hearing loss. Many people will say no, but it’s not measured, and if you would measure someone’s hearing, you would find that many people who say they don’t have hearing loss do in fact have some measure of hearing loss.
Toni began her advocacy journey as a way give back or to cope after her brother passed. Is that an example turning around something that’s negative?
PROF. MONTANO: Yeah, making something positive out of something that was unfortunate is great. Toni’s work has just been outstanding in this area. In fact, I think Toni is the person who opened my eyes about the lack of access for people with hearing loss in regular medical situations. I think the problem is that we assume that somebody is hearing and understanding what we’re saying, and that just may not be the case. Sometimes, somebody will come in and they’ll say they have a hearing loss and then, somebody will write down information for them, right? But what they write down is just a summary of what the medical person has said, and it isn’t every single word that was said. What they’re getting is an annotated version of what perhaps the doctor said to them in the emergency room. So, that might not be enough, especially when somebody has to make a medical decision. The other side of this is that a lot of people with hearing loss don’t speak up. They don’t say that they didn’t understand something. They want to be accepted. They want them to think that they’ve understood everything. So, without them making that request for help, they just sit there and get part of the information and not all of it.
What should a patient who is hard of hearing ask for when they are going into those medical situations?
PROF. MONTANO: I think the first thing that they need to do is say that they have a hearing loss and then inform the providers what the most effective method to communicate is for them. There are apps that people can use on their phone that are transcription apps that allow them to self-advocate. They can request to have captioning provided, or they can ask for note takers, or repetitions. This is a terrible time for people with hearing loss. Covid has been just a nightmare because of the use of masks. When somebody has a hearing loss, they rely on visual cues. They rely on good sound production and masks destroy both of those things. Once you put a mask on your face, you’ve taken away all visual cues. People get information by looking at someone’s lips and face so, masks have really been a problem for people with hearing loss.
Is there anything that you would want to make sure people know?
PROF. MONTANO: I think that patients need to advocate for themselves, and I think medical providers need to be more sensitive to the needs of people with hearing loss. . Right now, we’re far apart. We’re not close enough. Toni was a great advocate for her own services, and we were lucky that we were able to accommodate her here at Cornell. We were able to provide her the access she needed for her cochlear implant surgery. But Toni is an exception. How many other people are coming through the emergency room or visiting doctors who’ve got hearing loss, who are not hearing and are not saying, “I can’t hear you” or “I don’t understand what you’re saying”? How many times are medical personnel not considering if somebody is hearing what we’re saying? Are we so concerned about what we’re doing that we’re forgetting about the interpersonal relationship?
END OF INTERVIEW
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