I am so happy to welcome back a special guest in my Blog. Linda Daniel is an audiologist and Auditory Verbal Therapist who serves as the director of HEAR in Dallas. Linda accepted my request to share her unique experience with us in initiating a support group for adult cochlear implant recipients. This is the second of two posts highlighting various challenges and dilemmas faced by adult CI recipients. Their discussions also provide an optimistic perspective of the potential benefits that adults can derive from participation in such support groups as part of their rehabilitation program. Thank you Linda!
Best Regards, Naama
Adult CI Support Groups: Linda Daniel Guest Blog/Part 2
The Adult CI Support Group at HEAR In Dallas has a few other goals and purposes. We do not have captioning at this time for several reasons. First, captioning services are costly and there are no dues for the group. Second, everyone who attends is working on listening and communication skills along with learning to advocate for themselves. During the sharing, participants are encouraged to raise their hand and request clarification when needed or state what would help them such as “Could you please speak a little slower?” or “Could you please take your hand away from your face?” The group is a safe and understanding environment for practicing these strategies and allows participants to build skills and courage to do so “out there.” We have had hearing health professionals attend as well; they share their questions and concerns about interacting with individuals with hearing loss and the participants are gracious in coaching them in how they can be more sensitive to those they serve. The two-way sharing is such a beautiful and touching experience for all.
Excerpts from One Group Discussion
At one meeting, I posed these questions to the group: “Why do you come to the support group meetings? What do you get from it?” As they took turns sharing, I recorded their comments. This is a summary of what some of the participants shared.
FT—42 year-old man, post-linguistic progressive hearing loss, years of hearing aid use, and then CI 5 months ago
I was rather by myself just by being male then I became isolated even more as my hearing deteriorated. I didn’t admit I had a hearing deficit, which just made me more isolated. With hearing loss, there is so much unknown to experience – everything is all new ---and it’s good to be with people who are struggling like me. I now know I’m not alone in the struggle—we are struggling together. I come here to feel community and meet people who can sympathize and empathize with what I’m going through. This group is unique because we come together to support each other; the other group I’ve been to is a lecture-based group but does not provide the personal closeness and sharing of this group. I am grateful to hear from people who have had a CI for over 20 years share their experiences; I’ve had mine just five months. I learn so much from people at all stages of the journey.
RB--congenitally deaf, lifelong hearing aid user, CI and AR in her 30’s
So many CI users don’t feel Deaf and don’t feel Hearing. We’re in between the two groups. With the support group of people in the same situation, I now see that we can have a sense of belonging. We are a group—we do have a community: we are the group in between Deaf and Hearing! I also benefit from this group because we strive to strengthen our self-advocacy skills. I hear what others have done to advocate for themselves and it gives me the courage to try it myself. I feel so empowered when I break through one of my barriers. We’re learning to speak up for ourselves in the group…we tell each other is we can’t hear them, if they talk too fast or too soft. This helps me do this too in other situations that come up in life!
PS—55 year-old woman, post-linguistic progressive loss, years of hearing aid use, will get CI soon
I don’t have a CI yet and I’m amazed at the bravery I’ve heard from everyone’s sharing tonight. I’ve read tons of things about CIs but at the group, these are REAL people who have them and I feel honored to meet people who have the strength to go through this. My supervisor at work told me the most unbelievable thing that showed me how completely she does not know what my hearing loss is about and why I need a CI. She actually told me if I didn’t stress out, my hearing would come back. In the group, people showed me their reality with hearing loss and validated my experiences and my needs. These people have experienced what I am going through. With a hearing disability, we need so many people to assist us with so many things. It gets so awkward going through life misunderstood or being looked at like there’s something wrong with me.
BV—50 year-old woman, post-linguistic progressive loss, years of hearing aid use and recent CI
I came to the group originally because I wanted to meet a new community that has the same issues that I face as a CI recipient. I keep coming back because of the wonderful people I have met. Seeing all the bravery and courage makes me glad to come back. We talk about snags in our daily lives such as how to order food at a drive-through. It’s a frustration hearing people just don’t understand but the people in the group know what it’s like! Though we are all different in many ways, we all have a core of similar experiences. We give each other tips to handle life experiences. I also like this group’s FB page. We can throw out any question we want and others will respond and I get so many answers to read and see which one will work for me. When you’ve felt “different” for so long as a person with hearing loss, it’s great to feel the “same” as everyone in the group. It’s a great feeling and I take that feeling with me when I go home.
FE—30 year old woman, deaf since four years of age; years of hearing aid use, CI two years ago
I don’t always want to explain my CI to everyone over and over and deal with all the misconceptions about getting a CI. I’m lucky that I work in the field of deaf education because I’m around people who understand hearing loss. In the support group, I feel “power in numbers!” I get strength being with people who have CIs. I learn something new every time I am with people who have CIs. Deafness is The Invisible Handicap; hearing loss is very misunderstood. In the group, everyone understands how I feel. It reinforces that there are not CI “successes” and “failures.” Rather, there are a range of experiences and differences. Hearing what everyone goes through helps me count my blessings. The grief still comes back with the denial and the sadness and the group is where I know people understand how I feel.
GT—20 years old, congenitally deaf, CI since 2 years of age with Auditory-Verbal Therapy
I wanted to meet people like me so I could make friends with people who know how I feel. My mom is in the field of deaf education and even she can’t fully understand what I’m going through. But meeting others who have CIs, I feel they really understand what I’m going through. It’s nice to hear that I’m not the only one who struggles in a drive-through and who pretends to understand what someone says when I really don’t. Sometimes we laugh when we share the crazy things we ‘mishear’ during our day and what happens because of that! One lady shared that she nearly got fired when she told a co-worker something about a person in the office that she thought she heard but it wasn’t even close to right! We gasped, then laughed and nodded our heads, knowing how easily that can happen.
FS--deaf since age four; years of hearing aid use, CI in her mid-30’s
Before coming to the group, I though I was the only person with a hearing loss. I am the only person in my family who is deaf. The first time I came, I saw so many people like me and I was so excited. I love sharing experiences with each other, learning from each other and teaching each other about different devices. As much as my family loves me, they just don’t know how to support me. With the support of the group, I don’t expect as much from my family. I love this group—I come every time. I want to be independent. I don’t want my husband to have to be my ‘hearing’ for me all the time. One professor I had in college told me about the Disability Office and I found out about CART (Computer Assisted Real-Time Captioning). That was such a big step for me to be independent. This group helps me feel so much better and helps me know how to navigate life situations on my own.