Interview with late-deafened adult: Ken Arcia

THE DAILY MOTH (RENCA DUNN):

Hello! Last week “The Daily Moth” released a review for the film, “Sound of Metal.” This is how they sign it. We covered what was in the film. Now I have Ken Arcia with me. He will be the president for an association called the Association of Late-Deafened Adults (ALDA). This is for adults who became deafened later in life, which is similar to the plot in “Sound of Metal” with the man becoming deaf later in life. With that ALDA association — Ken will be the president on January 1. We at “The Daily Moth” were able to connect with Ken to talk with him about his thoughts on “Sound of Metal.” So, here is Ken.

Renca: Hello how are you?

Ken Arcia: Hello, good morning

Renca: Yes, good morning. I'm happy you are here with us. Do you mind explaining a little about yourself and who you are?

Ken: Sure, my name is Ken Arcia. I was born and raised in California in a city named Fresno. I grew up with full hearing. There was nothing wrong with my hearing, it was normal. I was not hard-of-hearing. I had full hearing. Then age 21 I had two surgeries on my head. I had tumors removed from both sides. I have a nervous system disorder called NF-2. After surgery, I could hear just a bit in the right ear. I couldn't hear anything at all on the left side. For two years, I was in denial. "I'm fine!" "I'm fine!" "I'm fine!" Then I finally realized I was missing a lot. I accepted my hearing loss and went through grieving that loss and the grieving process. Then I found a support group that led me to ALDA. So I grew up in Fresno then I moved to the SF Bay area and lived there for 20 years. Then I moved to Arizona 5 years ago.

Renca: How old were you when you learned sign language?

Ken: Maybe two or three years later so that means when I was around 25. I only had one sign language class, that was in Fresno. Then I decided I wanted to immerse myself in the deaf community. Many people in ALDA tend not to do that. They tend not to learn sign language. Every year, ALDA has a conference in different cities across the country. This year it is on hold due to COVID-19 of course. They average about 150-200 attendees. Most of them do not sign. Our philosophy is "whatever works". You can use a paper and pen, lipreading, signing, whatever works. We're open to all.

Renca: Yes, a tough spot. What you are used to in life. Then later, you know that quote, "The older you become, the harder it gets.” So you grow up used to things a certain way, then you get older...something happens. It changes your comfort zone.

Ken: Exactly.

Renca: That’s a tough spot.

Ken: The best part about ALDA is that you meet others with similar experiences. I call it my second family. Every year I am excited about going to the ALDA conference and seeing old friends and meeting new friends too. Many who have the same experiences.

Renca: So, related to the movie, “Sound of Metal,” do you yourself have thoughts. What do you think of that movie? Second, the ALDA community, did they have comments? What did they think of the movie?

Ken: As for myself, when I first watched the movie, overall, I thought it was a very good movie. But it had many triggers for me. Many experiences, I was like, “Whoa, I had to step back.” I forgot since it was almost 40 years ago since my hearing loss. I'm 58 now so my surgery was 37 years ago. I forgot what that experience was like. I related to some scenes in the movie like when he got angry and said, "I can't hear you!" I remember being frustrated because others didn't understand. You know what I mean? Some of the movie was funny, it was good. Some parts I was like, "Right! Right!" But, also, some parts of the movie had wrong information, or should I say, old information. One part of the movie said, "cochlear implants are not covered by insurance." That's old information and it is no longer true. Now they are covered. I had my CI surgery three years ago and it was fully covered by insurance. They tend not to pay for hearing aids. But they do tend to pay for CIs. One other thing, let me see my notes, the character Ruben — is this his sign name? He got two cochlear implants. Wow! Most late-deafened don't tend to get two CIs immediately. They will get one, then adjust to it, then get the second. Some get two at the same time, but most do not. Getting two CIs immediately after your hearing loss can be overwhelming.

One thing I noticed in the movie, Paul Raci, who played "Joe", said that if you get a CI, this group, referring to the deaf community, will reject you. That was not true in my case. I was very transparent and open when I decided to get a CI. I posted on Facebook and social media. No one told me that was the wrong thing to do. They knew I grew up hearing and I wanted some of that sound back. This is a different story than babies of course. That’s a different discussion. So I didn’t have any — the Deaf community was very welcoming and accepted me. It was nice. They knew I was trying. I was learning ASL, I was getting involved. At the end of the movie, there was a choice, right? There were two paths, with the first to get a CI and go back to the hearing world and never learn about the Deaf community or about "Deaf gain", or like myself, I was very fortunate. I immersed myself in the Deaf community and signing. I took the second path. I liked the ending. But, each person with a hearing loss has a different story and experience. I want to emphasize that. There is no "one size fits all" Each story is different.

Renca: I’m curious, do all ALDA members get a CI or do some get a hearing aid or what? What do the majority do?

Ken: Good question, now with technology, many don't know that CI technology has really improved tremendously.

For myself, I could have gotten a CI 10 or 15 years ago, but I was hesitant and wanted to wait until the technology got to a point where I was comfortable. Then more recently they improved to the point I decided to go ahead. Many late-deafened want to go back to where they could hear, of course. They may try a hearing aid, but for some, they are not strong enough. So it’s a good question. I see more and more of those attending our ALDAcon getting a CI. Every year our conferences are in different places.

Renca: What’s your perspective as to why the majority of late-deafened adults decide not to go into the deaf community when they get their hearing “back” but instead, go into the hearing world. Why do you think they feel motivated — you said yourself you became very involved with the Deaf community and felt connected but most do not. What's your perspective as to why many late-deafened do not get involved with the Deaf community?

Ken: I think it is really about individual choice. But, all of us live in a "hearing world" so they prefer to go back to what they know, what they are comfortable with. Going into the Deaf community and the Deaf world could be a shock to them and hard to adjust to. I love being involved with the Deaf community. Some may come to our conference, some may go back to the hearing world and their comfort zone.

Renca: Yeah, I can understand that. Do you have any comments you want the Deaf community to know about late-deafened adults?

Ken: Well, every year, at our ALDA conference, two things happen. 1. We give a special award to a person who exemplifies the best qualities of a late-deafened adult. That award is named the I. King Jordan award because he himself is the most famous late-deafened adult. He became deaf at age 21, same as me. The second thing that what happens at ALDAcon is FUN! The final night we have karaoke. Why? Because every knows the music and can follow along if they see the words. I will say, “I remember that song!” It is a lot of wonderful fun.

Renca: Fun fact... I tried karaoke before. I was curious if they would recognize…

Ken: Signing or Singing?

Renca: No, I used my voice with the microphone! They had a scale where they would tell that you were doing a good job or if you needed to improve.

Ken: Oh really? That’s cool.

Renca: Yes, and the computer said I was doing a great job! I was like, “what?” I was just making things up but apparently I was doing a good job.

Ken: You can join “American Idol!”

Renca: Yes, I should!

Ken: If your family or friend are losing their hearing, I encourage them to join ALDA. Go to our website at www.alda.org or visit our ALDA Facebook page.

Renca: Thank you for sharing your thoughts and comments. Now we have a better understanding of the tough journey of those who become deaf later in life.

Ken: Thank you for inviting me. Thank you.