NOTE: This guest post by John Miller, and foreword by Pearl Feder, is from 2012 and was written originally to be published in the SayWhatClub Newsletter, Online Voices.
Foreword By Pearl Feder
I met John a few years ago while tweeting for the SayWhatClub. John found us through his attempts to learn more about persons with hearing loss (John says, “I searched Twitter for the hash tag #deaf. I have actually encountered a lot of useful information this way, as well as having followed individuals who, knowingly or not, have passed on tips that help me everyday.”) What makes John so amazingly different is that he is a young blind man with a hearing loss, living away from home at college. He is totally independent and communicates using different forms of technology and meets many people through social media. This young man has hopes and dreams like everyone else. To his credit, he is smart, savvy, assertive and so accepting of his blindness and hearing loss. He has a desire to achieve and will push his limits. Here is his story.
John Miller is 32 years of age (at the time of this writing), and originally from Charlotte, North Carolina. He is totally blind and partially deaf, due to a condition called Norrie Disease. For more on this disease, readers can visit http://www.norriedisease.org home of the Norrie Disease Association, of which John is a board member. To learn more about John, readers can visit another guest blog by John at Vision Aware.
John’s blog, A Blind Man’s Journey: http://www.blindtravel.net/
My situation is somewhat unique, and yet more common than we are entirely aware. I am totally blind with progressive hearing loss, as a result of Norrie Disease, a rare X-linked genetic disorder which causes males to be totally blind at birth or become blind in both eyes at a young age. Most males with Norrie disease experience hearing impairment and up to half of males with the disorder also have developmental delays, mental retardation or behavioral abnormalities. Norrie disease runs in families because it is passed down through one of the chromosomes that determines gender (X-chromosome), meaning that it typically effects men and is carried by women. There have been a few documented cases of its occurrence in females, however.
I was born blind, and yet I hadn’t become aware of this sensory lacking until age 5 or so. My cousin, who is a year younger than I am, also has this condition. Growing up with him and having someone I knew who understood some of the things I struggled with definitely helped me to deal with the many challenges I faced as a blind child. Actually I suppose these challenges weren’t too different from what any other child faces, but they mostly involved kicking the small kid around the class till he snaps and retaliates, giving us a good laugh.
My hearing loss was, not too surprisingly I suppose, slower in its arrival. I do think that even as a child I had some mild difficulty processing information and following conversations, but most really didn’t notice since a child’s opinion is rarely sought. Not to mention that I grew up with five sisters, three older and two younger, who also demanded a slice of parental attention.
I can recall academically struggling more than I understood at the time. I would often lose focus of whatever the teacher was speaking of, drifting into a land of daydreams of beaches and the sea. Hey, what’s so wrong with that! This failure to completely comprehend what was being discussed manifested itself in lower grades, however most of the adults who surrounded me put it up to my bad attitude at the time. I guess subconsciously I tried to cover things by talking back and otherwise acting out both in class and at home.
As had been suggested by research among those with Norrie, my hearing loss became significantly more pronounced as I entered my teen years. I think my mom noticed it first. She would ask a question and I would begin with the wrong answer, realizing my error mid-sentence and attempting to hastily correct it. For example, I might have heard “are you hungry?” as “are you running?” Then I’d answer “No, I was walking, at least I think… oh no! I don’t need anything to eat.” Worst would be if I just didn’t hear any of what she said, causing her to often retort “boy, you need to get your hearing checked!” After a couple more years of this struggle, and just as I entered college, the decision was finally made that I should acquire hearing aids. Only at that time, they’d thought I could perhaps suffice with just one aid in my right ear, the one that had been most affected.
Given that I am already blind and thus depend heavily on stereo sound, this most definitely did not work. I had balance issues from the start, often finding myself turning in circles on campus and bouncing off of brick walls. I also would wait at street crossings until someone came along to offer me assistance, for fear of possibly sailing far offline and into moving traffic. I did not then and still don’t use a guide dog, because having one requires some special adaptations when one also has hearing loss. I’m not entirely sure I want to get a dog anyway, as I feel more comfortable with my cane. When compounded with the social awkwardness that accompanied my attempts at explaining why I had this device, the hearing aid, lodged inside of my ear, I eventually resorted to only wearing it while watching TV or otherwise listening to audio in my dorm room. Needless to say, this kind of haphazard handling led to the aid’s destruction. While attempting to hurriedly transfer it from ear to the storage pouch I’d been given, the aid slipped from my hand and slid across the floor. In my haste to retrieve it, I stepped down and crushed it into plastic dust.
This occurred in 2001. I didn’t make another go at wearing hearing aids until 2006, by which time I was more socially mature. Even so, I would often leave my two aids inside the house if I knew I would be in a situation where I could encounter people I might want to befriend, such as out on my porch or while walking along a college campus. I was finally forced to completely accept the aids and begin wearing them regularly once I became exhausted by just trying to keep up with a one-on-one conversation in a relatively quiet environment.
I began graduate studies in the fall of 2009, planning to attain my MS in Rehabilitation Counseling and Psychology from the University of North Carolina. As I write, I am still in the process of working on this degree. Those old hearing aids remained with me until the fall of 2010, during which time the audiologist with whom I am working in the Chapel Hill area gave me loaners as we worked to build my case for even higher-quality devices. Fortunately, I was finally cleared to receive those new aids this past March. I can now hear more clearly than I probably ever have been able to. The only challenge I still have, and I imagine it will always be so to some degree, is coping in particularly loud social settings such as bars and restaurants.
The advantages, however, are numerous. I reside in my own apartment at the end of one of the buslines to campus, and for the first time, I can listen to my stories and other audio at a volume that doesn’t bother the neighbors. Also, I can now go to the grocery store and follow along as the shopper names different items that I might wish to purchase. Before, I would have to nearly stick my head in his or her mouth in order to ascertain what was being said. I still prefer to get friends to take me for groceries, but this isn’t always possible. So having the flexibility of at least being able to halfway work with a store employee is a plus.
Finally, I am more able to hear my computer while sitting on my couch. I use a screen-reading program called System Access that converts the written text into spoken audio. With this program loaded onto my netbook, I now have unheard of portability and can do work, browse the web, and other things from the bus, while sitting outside, or nearly anywhere.
I guess my take-home message would be this: learning to deal with issues surrounding loss of hearing can be a challenge, just as with many other difficulties that one might be confronted with. The important thing to remember is that you are not alone, and that something can usually be done to accommodate whichever situation you prefer. Nothing should ever be forced on anyone, but persons should be made aware of the choices they have with regards to technology, and/or techniques, such as sign language, that may ease their journey into the deaf experience. I am very thankful to live in an era where such options are available to me.
I benefit greatly from the support networks I have already found. In the Fall of 2009, I attended a conference for a burgeoning nonprofit organization called the Norrie Disease Association. Their website is http://www.norriedisease.org. This conference put me in touch with many other individuals who were doing research on or living with Norrie, and it ultimately motivated me to join the board and begin contributing to the association myself. I continue to work on more fruitful ways to gain publicity for us as we prepare for our next convention in 2012.