This is a coming out of sorts. I want to share my story and perspective and shine a light on a perspective that tends to get lost in discussions of Deaf/deaf experiences.
Over the past 6 months, Katie’s hearing loss has progressed and her speech perception had degraded to a level that qualified her for a cochlear implant. It was always a relief to me that she didn’t previously qualify so I was not forced into making what I considered a very controversial decision.
After months of agonizing, researching, talking to others about their experiences, and as much as possible presenting options to Katie, we decided to go ahead with a unilateral cochlear implant. I quickly figured out that it was best to do my research and limit how many knew we were considering the possibility.
I can honestly say, this was the hardest decision I have ever made in my life. There are so many medical, cultural, social implication for Katie that rest on my shoulders. First of all, the risk of medical complications and doing more damage to her current hearing levels was a serious consideration. Even more significant, the potential to damage her cultural identity both to others in the Deaf community and to her self-identity. Katie is clearly and unequivocally culturally Deaf. She identifies as Deaf and American Sign Language is her natural and primary language. That being said, as hard as I have tried to help her find her place in the Deaf community, and the commitment I have made to learn her language, does not change the fact that her world outside of school is hearing. When she comes home from school she has no deaf, signing peers. Her family and friends are hearing/non signing, and aside from me and the adults she meets and interacts with at deaf coffee, she lives in a hearing, speaking world.
Those of you that know Katie personally, know that she is very active and social. Over the last year she has thrived at a deaf school. Her pragmatic communication skills have grown tremendously. Over the past year, we stopped formal speech therapy and honestly I have not required that she wear her hearing aids. Ironically over the last year, she has become more vigilant about wearing her hearing aids, changing batteries and ensuring that they are working properly. In the past when it was just the two of us, we would often only use ASL. Over the past year, she has regularly asked me to voice things when we are communicating, and she has regularly asked me how to say her spelling words or words we are reading.
I can go on and on about the background of my decision-making. We could argue about the influences, including mine, that drive Katie’s preferences. Instead I would like to acknowledge that we are all individuals, and our individual experiences shape who we are. Like many other decisions, one size does not fit all when it comes to language modality.
Yesterday, Katie was unilaterally implanted with a cochlear implant. I did not tell many people of our plans in advance, aside from those whose experience I inquired about. I talked to kids who loved them, I talked to parents who opted not to implant their child, I talked to adults implanted as kids who loved them, and talked to adults implanted as children who don’t like them. After carefully weighing all the information I made the decision to move forward with one. I will also say that Katie wanted one, it had been explained to her through an interpreter, I have explained it to her, but realistically her understanding is pretty limited and ultimately this decision was mine.
This is the important part of my story, and why I didn’t announce this sooner…your response. My experience tells me that I am likely to get one of two responses.
Response One: You are pro Deaf, likely from a Deaf family, thinking what I have chosen for my daughter is almost criminal. You think because I am hearing I view my daughter as “defective” and needing to be “fixed.” You couldn’t be more wrong! I think my daughter was perfect pre implant. If Katie had rich Deaf surroundings, and peers to meet her social emotional needs I doubt we would have opted to implant. She and I will continue with ASL as her primary language, and I will continue to develop my ASL skills. Her Deaf culture and Deaf identity are very important to me.
Response Two: You are hearing with very little or no understanding of Deaf culture and Deaf identity, ready to congratulate me on “fixing” Katie’s hearing and “ensuring her future.” You also could not be more wrong. It is not a magic bullet! Cochlear implants require a lot of hard work, frustration, and dedication to realize the benefits, and that work is all hers. There are no guarantees! I have watched my daughter light up with pride when surrounded by deaf people. There is an undeniable sense of belonging that happens in Deaf surroundings. The fact that a 7 year old willingly endures 3-1/2 hours of daily commute to attend a Deaf school tells a story that I could never adequately articulate. It’s also important to point out that there are many successful signing Deaf adults, we’ve met them!
I can tell you I spent a lot of sleepless nights over this decision. I worry more about how Katie will look back at this decision and the impact it will have on her life, than how others view me. This cochlear implant was a mixed bag. I feel strongly that I made the best decision for my daughter, but admittedly it came with both tears of joy/anticipation and tears of loss.
If you are compelled to comment, than the appropriate response is “Good luck on your journey.” If you are Deaf, than wrap your arms around my daughter and keep her close to her culture and help her develop a healthy Deaf self-identity.
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