Author: Tony Trott
I think that my hearing disability is not clear to most people. Ever since I was a little kid music has always been a big part of my life. Whether it was church music or listening to my parent’s albums at home. I still remember the 
words to “The Ballad of Harry Lewis” from “My Son the Folk Singer” by Allan Sherman!
I started piano in second grade, and in fourth grade I switched to the saxophone and never looked back. I decided to get a degree in Music Education from James Madison University, and this is about when I began showing symptoms of my disability. Looking back, I could recognize various symptoms of Friedreich’s Ataxia in high school, but these symptoms, lack of coordination and not being very physically adept, were easily misinterpreted by everyone (me included) as just being an adolescent and dealing with changes related to puberty.
In college, however, my lack of physical adeptness became more pronounced and was officially diagnosed. My hearing, though, remained stable. Since I was studying music, I did not just need average hearing, I needed 
above-average hearing. — an aside, please don’t compare my situation to that of Beethoven; he was a musical genius, and I am not. — Whether it was a sight-singing class or basic music theory, hearing was essential.
As I said, my hearing was relatively stable throughout college, it didn’t really begin to deteriorate until my mid-20s. By that time, I had amassed a rather large collection of compact discs of many different types of music.
By now, mid-50s, my physical dexterity has deteriorated
a bit, and I don’t handle CDs as easily as I used to, and I really wanted the ability to listen to them on my computer while I was working (with headphones so as to not hinder my wife with her voice recognition software). So, I am in the process of ripping all my CDs to an external hard drive (that will, of course, be backed up). And I can fit many boxes of CDs and lots of downloaded music, onto a 4”x5” hard drive! And I have many boxes of CDs. So this has not been an afternoon task.
Technological improvements certainly are helpful for many individuals, especially those with disabilities. As I rip these CDs, I do laugh to myself that many in the younger generation might not know what a CD is, and if they do have any, they certainly are not keeping them like I am. Just call me old-fashioned. And I need to do what works for me.
Festival, The Body Show. It was a hot Friday night and after the show my friends and I went to the Dupont Circle, Metro station. We pushed the elevator button and saw that the elevator was there, but the door didn’t open. We pushed the call button to access the Metro personnel, but nobody answered. My friend went down the escalator and spoke to the individual on duty, and he was less than helpful. Many times, an elevator is not stuck, but can be accessed by the control panel and opened. My friend was appalled at the reaction by Metro personnel. He was not interested in trying and showed no desire to attempt to get me a shuttle. My friend came up to where I was anxiously waiting, was shocked by the treatment on the issue (I wasn’t) and offered to escort me to the next Metro station. Because she was headed to Maryland and I was going in the opposite direction to Virginia, and it was already 10 PM on a scorching Friday night, I told her I would be fine and she should go her way.
Meanwhile, my GPS was draining the phone, I kept checking my wheelchair power and it was going down but not in the red zone, and my husband was texting trying to figure out where I was. It was 10:45 and not the best time to be rolling around DC. Gentlemen’s clubs and other nighttime establishments were gaining lines, so I decided that it was best for me to make a beeline to the Metro station that I knew best even though it was almost a mile. It was worth it because I knew the streets and it was on a line that would get me directly home. I put my phone on battery save mode, texted my husband my plan, and started off.
Once in bed, my husband and I simultaneously said to each other, “Well, this will make a good blog.”
that really interested me as I’m finding myself questioning my own independence lately. And this made me think of a piece I had written more recently about shades of gray. It is a realistic concept to think about when you have a degenerative disability. You don’t notice it every day, but all of a sudden something that used to be easy starts to be more difficult to do completely on your own and you might need a little bit of help.
My independence in tasks will vary, and many times I need to learn to do things a different way so I can continue to do them all on my own. Asking for help isn’t easy, and I want to be as self-sufficient as I can. But for me and anyone who is navigating this world, asking for assistance does not equal giving up your independence. Sometimes it’s a smart and efficient thing to do. Such tasks as asking for directions, requiring help to figure out something technical related to computer usage, researching to buy a new appliance, and the like. I could go on, but I think you get the point.