Cyborg report ... ghosting the disabled

Ghosting isn't just something that just happens online. Over the last few years, because of my hearing loss, many people in my social and professional life found communication with me so difficult, they simply stopped talking to me. Not everyone, by any means, but quite a few people found interactions clumsy, and I'm sure part of their discomfort came from not wanting to offend me through some inadvertent faux pas.

I'm not even sure if they were aware of the ghosting. These are all good people, and I don't for a moment believe that their intentions were malicious. However, their uncertainty paralyzed them and often led to inaction.

Of course communication is a two-way street. I didn't help matters, because I was so nervous about mishearing a conversation I rarely interacted with them. In many ways I ghosted myself.

My sense of isolation grew and turned into depression. I felt trapped within my circumstances and my job. I was desperate to escape the haunted house my body had become, so during the first part of the year, I ramped up my online communications, because at least here, I felt like I could talk to people and understand their responses. 

Then over the summer, my audiologist's office recommended I try a new captioning phone that enables me to answer the phone in my home as well as place outgoing calls. With that phone came a new taste of freedom. However, the face-to-face communication issues remained. I've worn hearing aids since my mid-twenties, and my current audiologist has been with me for over twenty-five years. He had nothing to help me and has been advocating a cochlear implant for a couple of years.

Meanwhile, our library director has a friend who had recently gotten a cochlear implant. Like me, this lady had zero percent speech discrimination prior to acquiring her implant. I wrote to her online early in the fall of 2016, and she graciously shared her experience with me. I took the first steps to see if I was a good candidate for the implant. I knew if I hesitated, I might never go forward with the surgery. One thing led to another, and then things cannonballed in good ways.

In just the two weeks since my implant has been activated, I have known a remarkable difference in how I am able to interact with other people. I don't catch every word, and mumblers are still to be feared, but I feel much more confident in face-to-face interactions.

Last week, a lady spelled her name out loud for me, and I managed to pull up her record on our computer system. Prior to the implant, I never could have accomplished that simple task. Right now, I still use a combination of lip-reading and visual cues, but I have interacted with cashiers in the grocery store and students on campus in ways that I have not been able to do in years.

While these incidents might seem insignificant to many, the confidence induced by these interactions has lifted me out of the depression that engulfed me in 2016. I feel more empowered to take control of my life.

I've got a long way to go in my hearing therapy and a lot of hurdles to surmount, but right now everything feels possible. That little bit of hope sustains me. I don't shy away from social interactions, and while I'm not always one hundred percent successful all of the time, each interaction allows me to test my progress and adapt myself to new circumstances.  I am hoping that as my self-confidence increases, then maybe others will feel more comfortable being around me.

And while all of this is a marvelous success story in the making, I still want to talk about the ghosting. This post isn't about blame, because I don't think a lot of people even realize they're doing it. I'm hoping that if I talk about my experience, others might recognize ways they can help their disabled friends.

Living with a disability of any sort is already daunting enough. When you have an invisible disability like a hearing impairment, people often make assumptions: that you're dumb, or you're obfuscating to create problems, or that you're ignoring people because you're a snob. Those assumptions take a life of their own and become labels.

Frustration is already high given the amount of daily obstacles that must be navigated, so what the able-bodied might see as a minor slight--the lack of closed captioning on a movie trailer, or a closed handicapped ramp, or signage without braille--the disabled person, who has spent years staring down obstacle after obstacle after obstacle, sees the final straw that breaks the camel's back. Frustration causes us to lash out, and while sometimes we're heard, often we are ignored, and that just increases our distress.

When I become frustrated and cry out, it's not about you. It's about my own feelings of helplessness. The same is true of many disabled people. We talk and talk and talk, and when no one listens, we scream. Not all of us are famous enough to be heard. So we shout and watch our words drown and when no one responds, we withdraw and become ghosts.

We tend to forget we're worthwhile. We live on the margins. Sometimes we become depressed and that causes us to withdraw even more. We become ghosts.

But there are a few exorcists among you, dear people in my computer. There are the podcasters who, although they knew I am deaf, invited me to be on their shows nonetheless. Even though most of the time, I've had to turn folks down, the fact that people thought to ask me didn't offend me. You made me feel included with something so simple as an invitation.

There are the well-intentioned friends who have listened to me when I become frustrated. Others have offered me solutions--some of which have worked and others I have known about. No matter if I've tried the same thing dozens of times without success, the fact that someone took time from their busy schedule to alert me tells me that you are kind. It truly is the thought that counts. Still others have championed my cause with something so effortless as an RT when I advocated for change. Those small kindnesses add up to daily dosages of hope, and hope keeps the ghosts at bay.

I can only speak for myself, but it's okay for you to acknowledge my disability. You may ask me questions. You may ask me how you can help me. I am not ashamed of my disability any more than I am ashamed of my hair color or my height. Being deaf is a part of me, and I'm delighted to teach you ways to keep myself and others from becoming ghosts, because take it from me: ghosts are unhappy creatures and isolation is no fun.