Up Front on the Back Page Carrie Spangler

Educational Audiologist with Hearing Loss Speaks About her Career, Advocacy Efforts and Life with Hearing Loss

Interview by Anna Karkovska McGlew, M.A.

Tell us about your hearing loss.
My hearing loss is a bilateral mild sloping to profound sensorineural hearing loss, which was caused by trauma and lack of oxygen at birth.
Do you have any memories that you would like to share from the time before you were fitted with hearing aids?
Honestly, I don’t remember a time when I did not have hearing aids. Because I was born with a hearing loss, I did not know that I was missing information. Lack of hearing was “normal” for me.

Tell us how your life changed after receiving hearing aids at age 4.
I remember vividly the office in which I got my hearing aids. I remember running up and down the ramp in the audiology suite while my parents were listening to the devastating news that the audiologist was sharing with them. For me….I was a happy-go-lucky 4-year old going to a doctor’s appointment. It was certainly another experience for my parents. On that day, I distinctly remember having the ear mold impression material mixed up and the pink material squirted in my ears….how cold it was and how quiet the world was. A few weeks later, returning to the same place and getting fit with the hearing aids. I remember leaving and hearing my footsteps on the hard floor as we walked outside. I wanted my parents to roll down the windows of the car so that I could hear the wind blowing. This was just the beginning of many more appointments and many sessions of therapy to begin the process of developing clear spoken language.

Share your experiences attending mainstream middle and high school with hearing loss.
This was certainly the most difficult time for me. As with any teenager, I just wanted to fit in and be part of a group. I was already one of the tallest girls in my class, had braces, a horrible perm for my hair…add to that the hearing aids and talking funny. I certainly felt like an outsider and had some really “down” moments during this time of my life. As professionals, we talk a lot about the grief cycle that parents go through when they find out that their child has a hearing loss. I found that I went through many components of this grief cycle as a teenager trying to accept my hearing loss as a part of who I was. I was mad at God for making me different and went through some periods of depression.

Why did you decide to become an educational audiologist? What attracted you to this setting?
When you are younger and someone asks you….what do you want to be when you grow up, the field of audiology never crossed my mind. During my senior year of high school I was attending The University of Akron as a patient to have my hearing assessed and hearing aids adjusted. The audiologist put a little bug in my ear and said, “You should consider becoming an audiologist.” I started talking to other professionals and mentors in the field of speech-language pathology and audiology and decided that this was something I wanted to do.

Does being an educational audiologist with hearing loss help students with hearing loss relate to you? How does your hearing loss influence how you practice as an educational audiologist?
It is an amazing connection with the students and families that I work with. I feel blessed that I have a career that has come together with a purpose. Having both professional and personal knowledge of living life with hearing loss shows immediate empathy and connection. I experienced a rollercoaster of emotions growing up in a mainstream setting with hearing loss and know what it is like to be in the shoes of these children and students. Personal experience paired together with professional knowledge gives credibility to the counseling, IEP suggestions, modifications, advocacy training and other programming that is helpful for students who have hearing loss.

Tell us about your mentors.
There are so many people who have positively influenced me throughout my life and helped me to stay on this path professionally. I know that I will be leaving many out as I talk about a few. As I began my graduate work in audiology, Carol Flexer is someone who had worked with me as a young child and when I had the opportunity to pursue my degree as an audiologist, she provided me with much inspiration through her knowledge and actions as a professor, supervisor and now as a friend. Another person who has positively influenced me professionally is Cheryl DeConde-Johnson. As a student in graduate school, I remember buying her textbook “Educational Audiology Handbook” because that was the direction of audiology that I wanted to pursue. Over the past five years, I have had the honor to work collaboratively on several projects with Cheryl and know her on a personal level. Through her mentorship and friendship, I have learned and grown as a person and professionally.

Tell us about your advocacy efforts. What inspired you to become involved in advocacy for hearing aids and newborn hearing screening?
Hearing aids are my connection to the world, to people and to my family—this inspires me to advocate for the hearing and listening needs of others, especially children who may not have the ability or knowledge to advocate for themselves. As I looked back at my life, I recognize that being identified late at the age of 4 resulted in many extra years of speech and language therapy sessions as well as additional special education services to help with my academics. I realized how much time, energy, and tears my family went through to “catch me up” with my peers with typical hearing. I am involved with a service organization called Quota International. Our local organization had a vested interest in helping with newborn hearing screening. Through this organization I became involved in this initiative for Ohio.

Professionally, I was working with parents who were retelling my story of late identification of hearing loss for their own children in the year 2002. This motivated me to advocate on behalf of families in Ohio for universal newborn hearing screening. We can easily screen for hearing loss and these children do not need to go through all of the struggles that I went through because the “window closed”.

I also recently was involved in a group which successfully advocated for the addition of a line item to the Ohio budget, which helps fund hearing aids for children with hearing loss in Ohio. This funding was recently allocated and rules are in the process of being adopted. The intent is to assist families who do not qualify for public assistance (Medicaid) but fall within 200-400 percent of the poverty level. This funding is for the first set of hearing aids for children ages birth to 21 and it is a step in the right direction.

As an individual who wears hearing aids during all waking moments of the day and depends on these amazing devices to live independently and communicate, I cannot imagine having to go through life without hearing aids.

What is your advice to tweens and teens in navigating the social scene of middle and high school?
Growing up with hearing loss in the mainstream setting has it benefits and pitfalls. One of the disadvantages that I experiences is the feeling of “I am the only one”. There was no one else that I could talk to that understood the “shoes that I was walking in.” I also felt that there were many situations that I would have handled differently if I had known about someone else’s experience. As humans, we all want to feel that we belong. When I started my work as an educational audiologist, the students that I served were in the mainstream setting and they were the only ones in the school district that had a hearing loss. This also becomes that fragile time in a teens life where they might want to forego the hearing aids in order to be accepted by their peers. By knowing that there are other students that wear hearing aids and have similar feelings to others, they may rise above their differences and feel comfortable with who they are.

My advice to teens and tweens with hearing loss is to get connected! Find something that you are interested in and join a group. This creates a network of friends who share a common interest. It is also helpful to have one good friend that understands a little more about your hearing loss. I had a good friend who was often my extra ear and would stand up for me if someone else was teasing. Also, know what your communication barriers are in the social scene and brainstorm ways that you can try to overcome some of those situations. I was always shy about telling anyone that I wore hearing aids and at times felt excluded from social situations because I did not feel a part of the conversations. I wish I had more confidence at an earlier age to advocate for some of my listening needs. Teens and ‘tweens with hearing loss need to know that there are others like them who understand what it is like to walk in their shoes.

How has your career choice influenced how you communicate with your children?
I believe that my career choice and being a mom has made me a stronger advocate for my hearing and listening needs. I continuously educate my own children about what it is like to have a hearing loss and what they need to do in order to effectively communicate with mom. I also know that as a parent, I need to be sure that I can meet their needs and communicate effectively. I am continuously exploring assistive technology and communication strategies in order to keep in the loop with my own kids.

What inspires you? Who are your heroes—from everyday life as well as public or well-known figures?
I will never forget the day I met the first person with hearing loss who was close to my age. Karen MacIver-Lux was assigned to me as a patient when she was a graduate student at The University of Akron. I remember thinking, “Here is this beautiful young college student who is wearing hearing aids and uses a personal FM system and she is training to be an audiologist! I want to be just like her!” Thankfully she is still a blessing in my life today. I also believe in my own faith that God has given me a hearing loss for a purpose. I experienced many challenges along the way before I clearly understood what this purpose was, but sometimes weathering the storms makes you appreciate your purpose in a much greater way. I am a much better audiologist because of my personal journey with hearing loss and would not change this.

We want you on the Back Page!

If you have stories to tell, experiences to share and a perspective on hearing loss for this column, please email us and tell us a bit about yourself.