Month: July 2021

“Service Dogs, Rabbit Hutches and ASL Humiliation: My Introduction to Deaf Culture”

On By Mike U.In Deaf Culture, deafness2 Comments

In 1993, I relocated from the family farm in Utah to a tiny Colorado town (population 800). I was enrolled in a tech school, seeing a counselor every week for major depression, PTSD, sleep problems and issues related to hearing loss, and hoping to change my fortunes in life. My therapist, a wonderful woman named Meryl who helped facilitate my apartment hunt and my tech school enrollment, mentioned an American Sign Language class which was to be held that fall two evenings a week at the tech school. She gave me the name of the ASL teacher, and off I went to meet the person who would introduce me to ASL, Deaf culture, and who would leave a bitter and frustrating first impression on me of all things Deaf.

Kay (not her real name) was from back East, profoundly deaf and had apparently worked under former Sen. Ted Kennedy on the Americans with Disabilities Act. She wore hearing aids but was vocal and her speech was quite clear. Her hand-signing was amazing—fast and fluid and effortless. I often marveled at how anyone could use two languages simultaneously—speech and signing—and be so proficient at both while so many hearing people can’t even use proper English alone. She was jovial, loud, supremely confident and seemed like a good person.

She had a small plot of land about four miles from the town where I lived, and she had me come over frequently to perform odd jobs around her place. She had a beautiful garden and some small farm animals. One task she appointed to me was to build a rabbit hutch. Although I’d grown up on a farm, I had very little experience with rabbits, but I winged it and constructed a decent hutch from scratch. I enjoyed the project, although she could be controlling and forceful, sometimes demanding. But she was pleased with the results.

She also had a black service dog of indeterminate breed (I’m no canine expert, alas). I’d never been around service dogs before so it was interesting seeing how this dog and this person interacted with one another. The dog was intelligent, highly trained and followed instructions well. The way he alerted Kay to noises was astonishing at times. Door bells, phones, alarm clock, whatever, this dog knew exactly what to do. Plus, he was friendly and hey, who doesn’t love dogs?

Kay appeared to be taking me under her wing. I was struggling with hearing loss and depression, and the only support I had up to that point was my counselor, whom I’d been seeing for a couple of months. This area is extremely rural, dotted with small towns amid vast expanses of farmland. There were no deaf support services of any sort for hundreds of miles. I was the only student in Kay’s ASL class who had hearing loss. I think she definitely understood my frustration with my hearing problem and how it impacted my life. She spoke at length about her own depression and how her deafness had exacerbated it over the years. If anyone could understand, it was Kay.

The ASL class had about nine other students besides myself, and all of them were nurses from the local hospital who were learning ASL to communicate with deaf and hard-of-hearing patients. As I was the lone deaf—and male—student, I felt out of place, but everyone was friendly and patient with me. A woman who worked with Kay attended the classes and I sat beside her as she did real-time captioning for me on her laptop computer. It was difficult to follow what Kay was signing and what was being typed on the screen as Kay spoke.

There was such irony in the fact that I was the only student with hearing loss, yet I was also the worst student when it came to picking up ASL. I had never been a visual learner. I excelled all through school by listening and taking notes, but that all changed when I began losing my hearing and had to switch to visual learning methods. I struggled making the connections between hand-signs and words during Kay’s lectures. It just didn’t click in my head. I had the same frustrations trying to learn signs out of my textbook. At one point midway through the class, we were assigned to give a presentation to the class using only hand-signing. The other students breezed through this assignment. When my turn came, it was a disaster. I couldn’t remember many of the signs and my presentation was halting and disjointed and embarrassing. I was humiliated. How could I ever come to grips with my hearing loss if I could never even learn ASL?

Kay was encouraging and supportive. But there was always something else there. Although she was confident on the outside, it occurred to me that she was struggling with her own demons. She had erected a facade of cheerfulness and positivity, but I could tell she wasn’t quite the strong and happy person she put forth to others. Her controlling nature continued to come into play as she began to expect—and demand—more and more from me.

Kay spoke of Deaf culture often in class, and even more so to me in private. In her life back East, she’d been deeply rooted in Deaf culture and knew some influential people in government and social circles. But here, in this area that can be best described as “a wide spot in the road,” there was nothing. No support for deaf people anywhere. I’m sure it bothered her, coming as she had from a deep and connected culture of Deaf people. I believe she wanted to establish something similar here. And that’s where things went off into the ditch.

Near the end of the ASL class, Kay told me about a program wherein deaf people are trained to go around to area schools and give presentations on deafness and what it’s like to be deaf in a hearing world. Of course, it was her plan for me to undergo this training and become an advocate of sorts, traveling around to schools and speaking about deafness and how it affects daily life. The problem? I would have to drop out of tech school to do this, something I was not willing to do. Kay spoke of this to me a few times, excitedly and forcefully imploring me to do this, that I’d be just the person to do it, and I could tell she had already made up her mind that I was going to do it.

I had a full plate at the time. I was in school, struggling to learn with no support services whatsoever to help out during class. I was in counseling, trying to sort out my chaotic life and find a way to slow down my rampaging depression and treat my chronic insomnia, as well as deal with PTSD from a severely dysfunctional childhood. I needed stability and a safe haven from a world outside my control. The last thing I wanted in my life was for someone to come along and upend everything I was trying to do.

Kay and one of her friends came to my apartment late one Friday night before the last week of ASL class. She informed me that I was to go to a neighboring town with her early the next morning to attend the training seminar. She had her mind made up. I was going to do this for her. She would not take no for answer. It was surreal, as if she were experiencing some sort of mania. She seemed too hyped about it, too cheerful, and she was behaving like a typical control-freak. I grew up with a control-freak for a father and I recognize this behavior in others. She refused to listen to my objections, repeatedly saying she’d be by the next morning to pick me up. Finally, she and her friend left. And I was pissed.

I didn’t sleep at all that night. Chronic insomnia is bad enough; add in extreme stress and it goes off the charts. I stared at the darkness all night, trying to decide what to do. I wasn’t about to give in and drop out of tech school to do her bidding. I wasn’t going to turn my back on everything I’d ever known in the hearing world and jump head-first into the Deaf world just because she demanded it. Kay had been profoundly deaf all of her life; I was dealing with late-onset adult hearing loss. All my life had been spent in the hearing world, all my hopes and dreams, failures and regrets had occurred in the hearing world. I could still hear a little but had tremendous difficulty understanding speech. All Kay knew about life was from a Deaf perspective; everything I’d experienced was from a hearing perspective. I was stuck between two worlds, trying to find my way, and what Kay was doing was attempting to force me to integrate into her world. I wasn’t ready to do that, nor was I willing.

Seven in the morning arrived and there she was, pounding on my door. I opened it and she told me I had fifteen minutes to get ready and she’d be waiting downstairs. I was exhausted from lack of sleep, angry at her attempts to control me, and extremely frustrated that she refused to listen to me when I had told her multiple times I was not interested in her plans for me. I paced frantically for ten minutes, then went downstairs to decline one final time.

Yeah, she was furious. She glared at me, bared her teeth, and cursed at me, shouting, “I thought you were different from all the rest!” Yeah, I was mortified, standing there in the crisp morning air, wondering if my neighbors could hear her swearing and shouting. I tried to explain to her why I couldn’t do what she wanted, but she refused to listen. All she could say was how angry she was at me. Her knuckles were white as she gripped the steering wheel. Finally she took off and left me standing there in the cool morning sunlight. I was humiliated.

The following Tuesday, we were to hand in our final assignment, a paper we were to write on anything to do with deafness. I had written about my battles with life-long major depression and how my progressive hearing loss had made everything so much worse in my life. I titled my paper “Deafness and Depression.”

As class ended that night, I was the last one to hand in my paper. Kay took a look at the title and sneered, ”’Deafness and Depression…’ What do YOU know about deafness and depression?” The expression on her face spoke volumes; it dripped with hatred and disgust. I was shocked, but not completely. I had expected her to be angry, but not that angry, and certainly not to the point where she’d completely invalidate my own life experience with deafness and depression out of petty spite because I’d refused to allow her to control me. I just shook my head and walked out. I didn’t bother attending the final class two nights later. I expected her to fail me but she gave me a B-. And that was the last time I ever saw Kay.

I know a little about Deaf culture, much of which I learned from Kay, but I’m not fluent in all the societal and cultural mores and norms therein. I’m aware that those who abide by Deaf culture see deafness as an identity to be fiercely defended, not as a disability to be fixed. Kay was certainly an adherent to this philosophy, even though she wore hearing aids. She took pride in being Deaf. She never let it hold her back from achieving her dreams. She grew up in an area where Deaf culture thrives and she had a lifetime of support and encouragement and acquaintances and education that reinforced the idea that Deafness was not a disorder but an identity to be cherished. My experience has been the opposite in all ways. The gulf between Kay’s philosophy and my own was vast and perhaps impossible to bridge. Her approach led to the death of a friendship and feelings of shame and worthlessness that dogged me for years. It also led to a distrust of all things Deaf. And that’s unfortunate because I realize she was one person with problems of her own, who overstepped many boundaries in her attempt to force me into being what she wanted me to be. In that regard, perhaps she wasn’t an ideal representative of Deaf culture, but simply a representative of flawed humanity, as are all of us. I never received an apology from her. I have no idea where she is now.

All these years later, it seems to me that there should be a better way of trying to bridge the gap between the hearing and the deaf worlds than to be so quick to segregate the two from one another. I live as a deaf guy in a hearing world that doesn’t understand or accept deafness, so I don’t fit in. I don’t fit into Deaf culture because I don’t know ASL and I’m not willing to forsake everything I’ve ever known to convert to what really is another culture. And even if I were willing, there’s no way to do it in my part of the world. So I isolate myself and dwell in the murky darkness between those two worlds.

There has to be a better way.

Featured

“The Deaf Guy”

On By Mike U.In deafness3 Comments

Let’s talk about labels, shall we? You know, those quaint little terms people give to one another to justify demonization and dehumanization? Yeah, those things. Whether it’s third-grade bullies on the playground harassing the kid who’s a little different, or the former leader of the free world calling immigrants “drug dealers, criminals and rapists” in order to justify kidnapping children and placing them in cages, all of it really comes from the same dark place.

Humans have a disturbing capacity to attack those who are different. “Otherism” serves this purpose well and has been used to justify the most heinous acts in human history. It’s a power-trip, one-upmanship to the extreme. You want to control an individual or a group of people? Stick a label on them, preferably an unsavory one that dehumanizes them, and suddenly you have the power to destroy them because they are outsiders, interlopers, outcasts, others.

Religion and politics have a rich history of otherism and persecution of those who don’t belong to their specific ideologies. It’s been said that more people have died in the name of some god or other than for any other reason in history. Whether this is accurate or not is beside the point; a look around the world throughout mankind’s infestation of this planet shows that history is rife with persecution, torture and murder of those who don’t adhere to a particular religious system, no matter what system it may be. As for politics, we need only look at our own two-party system here in the U.S., where the party which is hell-bent on destroying democracy considers the other party a cabal of satan-worshipping, cannibalistic pedophiles and uses this dangerous and ridiculous cult conspiracy theory to justify its attempts to overturn our elections and overthrow our government, not to mention its constant dehumanization and labeling of marginalized groups such as immigrants, LGBTQ+, people of color, the elderly, disabled and poor and anyone else who is “different.” Again, a glance at history will show atrocities committed against others as a central thread of human evolution.

What does this have to do with a deaf blog, you may ask? A lot, actually (and thanks for asking).

I’ve been labeled for various reasons throughout my life. I was born and raised in a particular western U.S. state notorious for being dominated by one particular religious system. I don’t belong to that particular religious system, so there was plenty of discrimination during my school years. It was made clear to me early on that I was an outcast, a pariah, and would forever be an outsider unless I became “one of them” and ceased to be “one of the others.” Academically, athletically and socially, there was discrimination. I even had a “pet bully” who delighted in terrorizing me for years for no apparent reason. I was simply “the non-mormon kid.” I was also “the out-of-town farm kid,” which further disqualified me from any semblance of equality and inclusion in that tight little wad of happy humanity at school. My home life wasn’t much better– I was simply invisible.

Labels are sticky things, hard to peel off once applied, and when you find yourself covered in them, sometimes you begin to believe them. You become overly sensitive to them, and yet desensitized to them at the same time—a strange paradox. Some labels contain a kernel of truth but are applied in such a way as to exaggerate that truth into something monstrous. This is especially painful with regards to physical traits and can haunt these victims for life. Some may be a nod to some personality trait or other quirk and may seem humorous to some. I was “the brain” in school due to my academic efforts (trying to fit in, an exercise in futility). At home I was “the disrespectful kid” for standing up to my abusive father. At various other times I held other odd titles, some of which were sort of funny and others which weren’t funny at all.

Many years ago, I had a part-time job cleaning toilets and mopping floors (there are not a lot of options in rural areas for deaf people). I was known as “the janitor guy.” Of all the people who worked there, only one person ever took the time to learn my name. Otherwise, it was “Hey, Janitor Guy! Come clean up this mess!” The thing with labels is they’re lazy. It takes zero effort to make up some cute little moniker for someone in order to lop that person into some anonymous group of others, but it takes effort to see that person as a unique human being. To everyone in that store (except Arnie—thanks, man), I was just “the janitor guy,” a sub-species of Earth organism not worthy of attention or inclusion. Sure, I cleaned toilets, but that didn’t define me as a person. It was only something I did for awhile and had no bearing on my humanity and my place in the cosmos.

And now I’m “the deaf guy.”

Again, there’s a kernel of truth here (heck, there’s an entire cob’s worth of kernels), but this label bothers me on a particularly deep level. You see, I don’t want to be deaf. Deafness has taken too much away from me for me to harbor any warm, fuzzy feelings about it. It’s not a cute label (like being “the Star Wars fanatic” as a teen), and it’s certainly not something I cherish (unlike “brother” or “friend” or “uncle”). This label just cuts too deeply and has produced too many scars.

Whenever I interact with anyone, the first thing I must explain is that I’m deaf. This immediately creates the scenario of “Hearing Person and Deaf Guy: A Study in Frustration, Confusion and Humiliation.” Right off the bat, I’ve become the deaf guy, and this is how everyone who interacts with me remembers me. It’s inescapable and there’s no way around it and it forces me into that group of nameless others who reside along the periphery of normal human experience.

Man: “Honey, guess what I saw in the store today? A deaf guy!”

Woman: “A deaf guy? Oh! Was he deaf?”

Man: “Yes!”

Woman: “Was he confused?”

Man: “Yes!”

Woman: “Was he embarrassed?”

Man: “Yes. He was deaf, after all!”

(cue canned laughter and sitcom music as scene fades to commercial)

Obviously, I joke about this stuff (if I didn’t have a sense of humor, I don’t know how I could ever possibly cope with deafness or depression or anything else) but it’s to prove a point: the hearing and the deaf live in completely different worlds. For someone such as myself, who experienced late-onset adult deafness due to meningitis as a teen, I’m not only “the deaf guy,” I’m also a member of the sub-group of others called “the in-betweeners.” I’m too deaf to fit into the hearing world, but not deaf enough to fit into the Deaf world.

I have severe hearing loss in both ears. I lip-read but it’s all guesswork and I miss a lot of words to the point where I must rely on people writing or typing what they say in order to understand. I can still hear some sounds. I don’t know sign language, and even if I did, I don’t know anyone who’s deaf or hard-of-hearing or who knows ASL. So, yeah, I’m one of the “too something but not something enough” subgroup of others. I remember my normal hearing days and miss them. I know a little about Deaf culture (something I’ll write about soon) and there is virtually nothing in my rural area in terms of deaf support services or groups. I view my deafness as a disability, something that runs counter to the view of many Deaf folks. Perhaps if I’d been born deaf or lost my hearing as a young child, I’d be more inclined to embrace it as an identity rather than a disability. As it stands now, deafness has robbed me of my life’s dream of becoming a musician; it has resulted in isolation and the inability to relate to other people; it has damaged my sense of self and has resulted in a lot of pain and loneliness. I can’t view that as a good thing no matter how hard I try.

Alas, I have to accept it at some point. It’s the only way to achieving peace within myself. I don’t want to be the deaf guy forever. I want to be Mike, a guy who has value as a human being, who just happens to be deaf. No more labels. Just truth.

“An Introduction”

On By Mike U.In deafness21 Comments

Hello, and welcome to my blog. My name’s Mike and I’m currently struggling to navigate the confusion, frustration and isolation I experience daily as I travel along my deaf journey.

I have severe hearing loss in both ears caused by meningitis as a teen, and its progressive nature has impacted my life in both pedestrian and dramatic fashion. Although my deafness has been a constant companion for 40 years, I have never come to grips with it; it’s a tenuous relationship with an unwelcome guest who will never leave and whose insidious nature has infiltrated all areas of my life.

Yeah, you could say I hate being deaf. Hence this blog.

This is my attempt to reach out from my isolation to see if there are others like me who are deaf and feeling shunned or who have become reclusive due to deafness, not knowing sign language or other deaf people, and who have essentially fallen by the wayside as life passes them by. I hope to write about my experiences as a functionally deaf person in a hearing world, the struggle to survive as a disabled person in a world where the disabled are generally ignored or deliberately scorned, and the coping mechanisms I’ve developed over the years to try to stay afloat in a rural area where I have no deaf friends or acquaintances and very little in terms of deaf support services.

Despite all of this, my deafness does not define who I am as a person—it is only part of who I am. In my story, deafness is only one of the characters in a cast of many. Finally coming to accept my deafness is my goal; perhaps learning to co-exist with—or even embrace—my deafness is my only chance of finding peace in my life. I hope to hear from others who may be in similar situations. Discovering we’re not alone could be the breakthrough we need to live better, more fulfilling lives.