***RE-RELEASE*** Hey All! I am really excited to share the first written 50/50 Project...Billie Maudry Spaight along with several other people whose stories you will hear, showed me how I can use this platform for people with hearing loss. What follows is the written essay Billie submitted I hope you enjoy Billie's 50.
Truth to Power-23
1-7-22
By Billie Mudry Spaight
My Crisis of Belonging…
. . .began in my mother’s womb more than 70 years ago when my placenta got detached from the wall of her womb and slid down to block my birth canal. My mom bled, went to the emergency room, and had a cesarean. Both of us nearly lost our lives, but, quite fortunately, survived that ordeal. She was fine. I, however, got damage to my brain as a result of that birth trauma. I had a condition known as choreoathetosis, a type of cerebral palsy. That condition gave me a host of problems, such as hearing loss, speech problems, spasticity especially around my mouth, general bad balance, and more. Add to that one leg slightly shorter than the other resulting in a limp and scoliosis that brought their own problems into the mix. It’s like a medical soap opera and I laugh about it because it’s absurd. I laugh because I refuse to let these things define me.
I had to go to school. Ugh. I loved learning whatever I could hear. I was excellent at reading. My developmental disabilities did not challenge my intellect. I had some friends. But, OY, enough of the other kids really made an emotional mess out of me, because I looked different, sounded different, and didn’t belong. I was called a spazz, a freak, dumb, and crazy. Those kids had a field day making fun out of how I talked and what my face looked like. Sometimes the mockery would get so intense that I would just stay home because I couldn’t take it. This followed me from grades 1 through 12 and, to a less-obvious extent, into the rest of my life. Lots of fun, yea.
When Trump made fun of a disabled reporter—he gave me a PTSD attack in the bargain bringing back a horrible memory. I danced at my junior high school prom with a gal who had Down’s syndrome. Her brother was a nasty piece of work who mocked me so much that I had to be pulled out of school for a couple of weeks. There are tons of other incidents, but what’s the point of citing a bunch of stories about how schoolkids can be nasty? Now, they call it bullying. Yep, I got beat up by a couple of kids for not hearing something they said to me. Nice kids, eh?
I still made it out of school O.K. I didn’t flunk out. I went to college, got my B.A., and eventually ended up in publishing. What’s more, I found the love of my life, J. Paddy Spaight, and we married. He didn’t care about my disabilities. He loved my abilities and just me as a human being. Still married for nearly 40 years and still in love.
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There are ongoing things that occur with certain disabilities. When one is hearing impaired, that is not a visible disability. It’s hard for people to grasp that I can hear some things and not other things. When I make a comment that doesn’t relate to what somebody actually said, it can appear as if I am either dumb or a mental case. People don’t automatically realize that I misheard something. They forget to face me when they talk. They forget that the background noise drowns out what they are saying. When I interrupt them, I am not being rude. All I know is that they stopped talking. I don’t hear the little cue that indicates they have more to say. They have no idea how intensely I am working continuously attempting to grasp what people are saying and understand what is happening all around me. It’s called hypervigilance. They don’t know how hard it is for me to get a word in edgewise, because I don’t know when it is truly O.K. for me to speak and to get it right. Thus, so much of I say is often ignored or dismissed by people.
For the longest time, I knew that there was something wrong with me, but I never really faced it—not until my mid-30s when I got harassed on a job for having hearing problems. That’s when I realized what I was dealing with—having a disability. That was what was wrong with me and that was what too many people were reacting to.
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Let me get a little bit political here. Disabilities are not generally on people’s minds. The only time disabilities ever get mentioned by politicians is when they are arguing about health care. Me? I am all-in for single-payor to pay for the myriad prescriptions I and my husband need just to function like normal neurotypical folks. Pete Buttigieg is the only politician who consistently mentions disabled people. He also talks about feeling isolated and alone, like he didn’t belong because of his sexual orientation. The first time I heard that, I was just one big puddle of tears. That sense of isolation, that awful, awkward feeling of something being wrong was what I identified very closely with—because of my disabilities. I could just feel that pain that he was expressing. It hit me right in the gut; it hit me down to my core where I live.
I know what it is like to be laughed at, to not be taken seriously, to be pushed out. I know what it is like to feel the pain of other folks who share that experience.
I took the struggle I had with my disabilities to develop empathy for other marginalized people. Marching for their causes, voting for their rights, crying for their pain. . .all like it was my own. I didn’t realize this. I figured it was just because of my being a liberal. But the extent that these things affected me was much more than that. It was identification—not identity politics—a sense of having experienced that pain of being on the outside. Pete said:
I am interested in tapping into the experience that Chasten and I have as a happy married couple but also as people who know what it’s like to be othered and to hopefully use that as some basis for solidarity. Not only with other members of the LGBT-Q community but anybody who for whatever reason has experienced exclusion or wondered whether they belong.
He calls this experience the Crisis of Belonging; I call it my life. That deep experiential empathy is vital to me. It is about the core of my existence. He was talking about exactly what I have done all my life. We both were taking lead (our negative experience) and transmuting it into gold (empathy for others). What beautiful alchemy!
There is so much more. Pete’s best friend when he was young was a person with a developmental disability. I have two of those disabilities. Pete got a Deaf sign name from Anderson Pleasants and learned some signing to thank him in a video. Then Pete hired Anderson to do a summer internship in South Bend. I’ve seen a picture of Anderson visiting Pete and Chasten at their home. OMG!
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If you are anything like me, you might feel that having high intelligence is a kind of disability. Let’s face it, highly intelligent folks are kind-of like freaks. People are afraid of us. They tune out what we say because they are embarrassed to admit that they maybe don’t understand what we are talking about. I wish I had the skill to make myself understood, to belong more. I’ve tried to dumb things down, and all that happens is that people think I am stupid. Oops, bad strategy. Maybe people with hearing impairment are not supposed to be smart? You think?
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I had the Holiday Blues recently, a very common phenomenon. I was sad because some people in my family did not get in touch with me on my computer. This is the only way I can communicate. It is my portal into connecting with others besides my husband. I posted about my blues and I was shamed by someone who was going through something worse (she didn’t say what it was). She wanted me to be like Tiny Tim, a good little disabled person, always sweet and taking all the abuse and nastiness the world can offer me. Sorry, no can do. I shared my pain about this expectation with a good friend. He cited how he was abandoned by so-called friends because he found out that he had a condition. There are truly nasty people in this world. It’s not my job to paste a smile on my face and just bear it all. It IS my job to tell the truth about human pain and vulnerability. I am not Tiny Tim. I’m me, with all the complexities and myriad feelings that make up a human being. Being treated wrongly hurts, and it makes me angry; any human being would admit to that. Why should I be different?
It’s not all bad. There are many good people who do extend caring and connectivity to those of us who have disabilities. I’m not sour on the whole human race—just that part of it that is insensitive and uncaring. The many who march for cures, who contribute to foundations, and who speak out about disabilities through the arts and other venues are inspirational. There are always the angels who hold doors open for us. I see them all the time. It is my hope that we are moving toward enlightenment so we can be more compassionate and caring toward each other. Let us all enlighten the world about disabilities by speaking Truth to Power.
Billie Mudry Spaight is a medical copyeditor. She lives with her husband, writer, J. Paddy Spaight, and their two cats (Corduroy and Gizmo), in Richmond Hill, New York City. Crafting, photography, and computer art are among her favorite pastimes. She likes to study medical things as well as researching the paranormal. The author of a small booklet of very short stories, Paradox: True or False Tales, she is currently writing this series of columns, Truth to Power, on her Facebook page, with the hope of putting them together a book of essays.
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This column is written in an attempt to communicate with all of you readers. I hope it will make you think and I also hope that you will enjoy it. If you disagree, tell me why. I could learn something. Maybe you want to add something. Please do. Silence says nothing. Even a simple LIKE shows that you are engaging with this, so any and all KIND FEEDBACK AND/OR CONSTRUCTIVE CRITICISM is very much appreciated. And feel free to share this with your own friends.