Even though I know it wasn’t intentional, the situation freaked me out. During her second shift, after we had gotten me into bed, a new caregiver went to get my phone from my office so that I could have it beside me during the night. In the process, she dropped it in such a way that the phone was toast. Not only could I not make calls on it, but since I couldn’t turn it on, the guy at Verizon told me the next day that none of my contacts could be retrieved. Since that list included 173 names and organizations, I was not happy. For various reasons, some of those phone numbers are ones that I can’t get back. (yes, I know I should have backed everything up a long time ago. It didn’t happen.) But all of that was secondary. The biggest reason for my emotional reaction at the time that the phone was broken was fear. Raw and pure fear. I absolutely hate being scared.
As a wheelchair user who spends a whole lot of time alone in my house, my phone is my lifeline. My safety net. In the event that I fall, or have an accident, or have spasms so severe that I cannot move, calling others is the only way that I can get myself some help. So, when my phone was suddenly out of commission at 10 p.m., with no way to do anything about it until the next morning, I went into panic mode. I didn’t sleep well at all that night. The whole situation only underscored just how vulnerable I am.
I understand that it is not something many other people can relate to. Typically, when an unexpected event happens to most other people, they can go to the door and yell for a neighbor, or get themselves out of the house or to the emergency room. Since I physically am not able to do those things, my having access to a phone is vitally important to my well-being. (And yes, I am getting one of those “I’ve fallen and I can’t get up” gizmos. Just waiting for Medicaid funding to be approved. It could take a while.) It would be safe for me to say that it would not be safe for me to live independently in my own home unless I had access to a phone all the time.
But for me, a phone isn’t only important in emergencies. In my life, a phone has always been an important link to the outside world. Since I don’t drive, I can’t connect with my friends socially as much as I would like to. It’s not easy to meet a group of people downtown for dinner or for a friend and me to decide we want to go to a 7:30 movie at 7:15. Therefore, most of my socialization occurs by talking to people on the phone. When I was in college and long-distance minutes were a thing, my phone bill was usually my biggest expense each month. To me, that was justified because I didn’t do the bar scene and I didn’t go to parties. In a way, talking to friends on the phone was my way of getting out. As friends and former caregivers will tell you, I still like to talk on the phone. It helps me to feel connected, especially when not too many people are around me physically.
More recently, my phone has been the tool I use in my advocacy efforts. At various times throughout this past year, I have called the offices of United States senators and representatives and tried to explain the various ways that programs funded by Medicaid are essential to my livelihood. Essential to my living in the community instead of a nursing home. And that there are a whole lot of people like me in the same situation. Most of the time I had to call repeatedly because the lines were busy or mailboxes were full. I guess many other people had the same idea. And there were certain weeks that I called everyone in Congress that I could, every day. My phone helps me to use my voice and connects me with the people who have the power to make decisions affecting my world. The decision makers might not ever know me personally, but I can make sure they know my opinions, and how their decisions could potentially affect me day-to-day.
And to the people who don’t pay attention or who tell me that my opinions don’t matter; to the people who don’t care much that I am isolated or forget that I have a name and a personality, I say this:
Hold the phone.