Stories of a Deaf Identity

FEATURED ARTICLE: SU DCC-NEWS: “Stories of a Deaf Identity”

by Kate Corbett Pollack

Originally written for the Disability Cultural Center Newsletter at Syracuse University.

A sound booth, where I spent seemingly half of my childhood

A sound booth, where I spent seemingly half of my childhood getting hearing tests.

[Names have been changed where appropriate.]

No one ever told me I was Deaf growing up. I didn’t know that I would ever be considered as such, because deaf and disabled were pejorative terms that well-meaning adults did not want associated with me. They feared I would be discriminated against and excluded from mainstream life were such labels applied. And they were probably right.

When my hearing loss was discovered, I was four years old. It was detected during a routine hearing test at my nursery school, and the word deaf was never used, at least not to me. The hearing loss was discovered when I was at the end of my nursery school career, and I was fitted with hearing aids and sent to a regular public kindergarten full of hearing children. I know now that I possess what audiologists refer to as some usable hearing. What this means is that I am able to hear the pitch and the range of sound used by the human voice at a level that other Deaf people may not. Hearing loss is complex, and on a spectrum. Just as people need different prescriptions for their glasses, people need different types of hearing devices and accommodations for their hearing loss. Because I was able to hear the human voice with hearing aids fairly well at this time, I was sent to public school and not to a residential Deaf school or put in special education.

The world before hearing aids was peaceful and beautiful; somewhat monastic. When I look back to those early years, when I was unaware of very much sound, I feel that I was myself. I was able to draw and think and read for hours uninterrupted, and I was content. I was unaware of many societal constructions, particularly regarding gender. The concept of either feeling like a boy or a girl did not occur to me. I just was, and I still feel that I just am; neither male nor female. It felt very free. My parents were not strict about upholding gender norms and the early 80s was a somewhat unisex time for children’s clothing and haircuts anyway. I could not hear television, radio, or other people’s conversations. I remember seeing many things and thinking about them and deciding for myself what they meant and were, as sound did not accompany images for me. I am grateful for this time in my life. My nursery school teacher wrote then in a progress report to my parents that I had an active imagination and was a bit too much in my own world, but otherwise there were no issues noticed regarding my hearing.

In elementary school, I sat up front in my classes and read the teacher’s lips. The faculty and staff at the school were aware that I was hearing impaired, which was the term used. I knew I was hard of hearing and that I had a hearing loss and a hearing impairment, all words that my audiologists applied to me, but I was not deaf. At school, on the playground, the word “deaf” was hurled at me as an insult by jeering boys whom I later learned to beat up, thanks to my father. I was not deaf.

As I continued into Middle School, I was still not among other students that were like me, and I had hearing friends, although my closest friends often had some kind of disability, because that is who I identified with, even if I wasn’t fully aware of and conscious of it. As a child, you just get along with whom you get along with, and that is the way it goes. I didn’t need to be able to hear very well in Middle School anyway, because the classes were so easy that I mostly skipped school. I skipped school for years and so did my best friends. We went downtown instead and hung around the city, often with people who were young adults. Just walking around all day long. I don’t think school really missed us, and we certainly didn’t miss it. I could hear my close friends because I was familiar with the timbre of their voices and how they moved their lips when they spoke. My hearing aids helped, too, but if anyone was going to be a close friend of mine, they had to be disability friendly and accommodate me, and stick up for me if people were assholes. Not that I needed a lot of help with that, but the fact that my best friends were as tough as I was really helped. They were actually much tougher than I ever was.

At this time in my life, I began to gain a reputation as a bit of a delinquent, although my teachers knew that I was smart. I was just bored in school and the streets where I lived were much more interesting and full of adventure, even if it meant having to dodge some scary situations. I had been arrested twice by age 14 and spent a day at juvenile hall in a “scared straight” type of program, because it looked like that was where I was headed. Part of that day was a class for the juvenile offenders during which a teacher asked us all what we wanted to be when we grew up. “A writer,” I said.

Because I was getting into so much trouble, my wary single father decided to put me in a private Quaker school. It wasn’t so much a private school as it was a last resort for a lot of parents, and many of my classmates had arrest records, but some were just from backgrounds where they had not been to public schools much. One of these students was named Claire. Claire was a teenager, had cerebral palsy, was deaf and used a wheelchair. Claire had spent her entire life up until that year in some type of group home where she was largely ignored and left in the corner. No one knew she was deaf until she was adopted by a caring lesbian couple when she was 13. The school was small, and we all had classes with Claire and wanted to communicate with her, so the Headmaster brought in a Deaf teacher who would teach an American Sign Language class. I was instantly interested.

I cannot recall exactly which day it was, but very shortly after joining the class, I hung around after to talk to Susan, the teacher. I told her I wore hearing aids. “Oh!” She exclaimed, “You’re Deaf!” I remember being shy and starting to say, “No, I am not…” but I could not finish the sentence because Susan had wrapped her arms around me in a giant bear hug. “Welcome,” she said. It hit me in the most powerful way, which I will never forget, what Susan meant: welcome to the Deaf community. You are appreciated and understood here. I knew then that “deaf” was no longer a bad word and for the first time in years I started to care about school.

Since Claire was in my other classes, that meant her interpreter, Maj, was also with her. So even though it wasn’t for me specifically, my classes were interpreted and I struck up a friendship with Maj. Although I benefited from sign language, my teachers other than Susan didn’t really think that I needed it. I may be remembering it wrong, but it felt like I learned sign language almost instantaneously. I remember the wonderful feeling of liberation that followed my newfound method of communication. The usual worry and strain that accompanied communicating with other people had lifted, because I could do so without talking or hearing. I believe that is why learning ASL was so easy. I absolutely loved it and it made perfect sense to me. Within a short time I was fluent and helping Maj to teach ASL classes at her house.

Unfortunately, life continued to be very hard in almost every other way, and I fell into a serious depression. I ended up being sent by my father to live in Syracuse with my mother. The high school I went to luckily had a Deaf program and I had interpreters in class, and the school was actually challenging. It was hard, however, for me to maintain my Deaf identity after graduating high school. I needed a job, my community college did not have a disability services office, and surviving and getting by became more of a priority for many years. I began to forget sign language. No one I knew used it; teachers didn’t know it, jobs and medical settings never offered interpreters and I didn’t know that I had a right to them anyway. I went through many very hard years and the stress negatively impacted my health. I struggled through undergrad in New York City without accommodations, but I still got high grades because of how hard I tried, even though this often led to me being hospitalized from stress and illness. This was a difficult stage for me and is a story for another time, perhaps.

It wasn’t until I started graduate school at Syracuse University that I began to reclaim my Deaf identity. The Disability Cultural Center at Syracuse University and its director, Diane Wiener, are the reasons that I was able to once again find the Deaf world, as was Professor Wendy Harbour (now at AHEAD) and others in Disability Studies and the School of Education. I was not sure how to transition from living as a hearing person, relying on my hearing aids, back to having a Deaf identity. I was also not sure how other Deaf people would feel about me; if I was “really” Deaf any more. I was nervous about it and worried that I could not go back, but no one ever treated me like I was not really Deaf. The Deaf people I met all were exceedingly aware of how many of us grow up being forced to hear and speak, constantly going to audiologists, taking years of speech therapy and not having interpreters or being taught to sign. It wasn’t just me.

I know now that there are many ways to be a Deaf person. I capitalize the D because that indicates that I am culturally Deaf and that I speak sign language and I identify as Deaf. I have Deaf friends and professors and colleagues. When the small d is used, that refers to a more medical model of deafness, deafness as a diagnosis, not an identity. That was how I had been defined growing up, as having a medical impairment that required constant audiology, therapy and hearing tests. There were teams of people working to make me into a hearing person as much as they could. When I speak aloud today, years of speech therapy go to work and I am always conscious of how I am mouthing my words and moving my tongue. My parents did not have any experience with Deaf children and they too learned about it through the medical model of disability. My parents, like many parents of disabled children, felt very concerned and wanted what was best for me. I believe that a Disability Studies model should be used to educate parents and children about disability so it won’t seem so frightening, as if a disabled child should be made as close to an able-bodied child as possible. Being unable to hear like hearing people is not a bad thing. The feeling of those early years during which I could not hear is starting to return to me. I feel more like myself, not someone who is being stretched and pulled to fit some kind of social model of an acceptable human. I do not anticipate that I will have to leave my Deaf identity behind again and I hope that it never happens. There are many ways to be Deaf, as I said. My story is one example of a Deaf life. Yes, many of us can speak, yes some of us can often hear more than you would think. And, I have met Deaf people who do not speak aloud, and do not have hearing very much at all. I have met Deaf people who wear hearing aids and speak aloud. I have met people who only use sign. I have met people with my level of hearing loss who never wore hearing aids growing up at all and do not want them. Some people use Cochlear Implants. Some wear hearing aids, and there are many types of those. Sometimes I wear hearing aids and often I do not. There is no real way to define Deafness for someone else. We are allowed to have differing identities and to claim those identities for ourselves.

The Psych Ward: A Retreat for Impoverished Women

vintagewoman

There is a resort for the poor, a place where mothers can finally get some rest from the constants of work and caring for children, infants and husbands: the psychiatric ward. Yes, there were men in the ward, too, but I did not speak to them. This story is about the women I met while committed over the December holiday season of 2014. I have changed names to protect anonymity.

While committed, I kept a diary in a composition book given to me by hospital staff. This is an excerpt.

I think it is December 20th or so. I’m at the Psych Ward, where I was admitted yesterday due to a “psychiatric breakdown”. Laura drove me up here, because a prior phone call to a social worker indicated it would be a good place to go. It’s sort of odd that I’m here. It feels as if I can be myself and not worry very much. A woman is sitting next to me who is older. She has short grey hair, like a bob. She is coloring in a coloring book. She told us she went to LeMoyne College and studied French. Big Daddy, who wears a Do-Rag, is talking about famous women’s butts and if they are fake or not. I cannot use my phone, it is locked away. My legs are weak from my back hurting and who knows what. I’ve been resting a lot and reading the Christian Patriarchy book I brought. I submitted my paper to Beth, which I am proud of, I am glad that I was able to get it done, with all the pain and going completely insane, or whatever you’d call it.

I was just in the day room getting coffee and I became very startled because it sounded like someone was saying, “Kate…Kate…” The doctors keep asking me if I hear things, and I know what that means: schizophrenia, a diagnosis I’d rather not get pegged with. It could very well just be confusion related to my hearing loss. Someone has just been admitted; a scraggly looking tallish man who was brought in on a gurney, looks like by EMT. He is young and seems fine, like everyone here, just about. Most people who are here, as is often the case, are just stressed out and overwhelmed right now because of health reasons and no way to access health care, and money, etc. Many are visibly physically disabled, with walkers and canes, even young people. I will likely soon join that crowd once my back is assessed by a physical therapist on Monday. They did give me a wheelchair but it is large and bulky and things are always blocked by chairs or carts around here. Most people in the Psych Ward have insomnia, as I do. I am given pills for it at night. I’m not allowed a hair dryer or anything with strings or cords. There are two men here who sound exactly like Jim Wilson, Brook’s father and it is a bit disconcerting. [Brook was an ex]

The woman next to me is named Donna. Lydia, my room mate, came by and introduced us. Donna becomes incredibly angry quite easily, and takes great offense to people talking to her or asking her questions. She shouts, “Leave me alone!!” She asked where I had gotten a job when I was talking about moving here from Brooklyn with some of the other women at the long day room table. When I answered, she told me that she was going to die. “I’m going to die,” Donna said while coloring a page with two mermaids on it. She had colored one a mint green and was working on coloring the other carnation pink. “Tomorrow,” she said, not looking up, “I’m going to die tomorrow.” Then a pause. “IF YOU DON’T STOP TALKING TO ME!!” And with that final statement she looked up at Lydia and I with a look of wide, teary eyed, utter and total indignation and offense. Donna wears bracelets all over her wrists, most of them pastel plastic beads, with one metal bracelet studded with blue glass jewels. Earlier, Lydia complemented Donna on her many bracelets, which was met with the same total outrage and offense because Lydia had interrupted Donna’s coloring. Donna had gestured emphatically to the mermaids. “I’m just trying to DO THIS THING!!” Her eyes glistening.

After a few outbursts like that, Lydia told Donna that she and I would go talk in our room. “Donna’s being a real bitch,” Lydia told me as we got back to our room. Then she proceeded to ask me again, as she did last night, about my plans for marriage and children. Lydia has been married for twenty-four years and has four boys. Two are grown up and two are adolescents. Her husband came today to visit and bring her dinner from McDonald’s. He arrived wearing a Santa hat, which Lydia said he wears all season. He seems, from what I could tell, pretty non-plussed about the whole situation, and very cheerful. When I told Lydia that I had no plans for marriage and never have wanted children, she found it very interesting. I expressed to her that I have no desire to be pregnant or have babies and I never have. “Huh,” she kept saying.

8:45pm  Snack time. Turkey sandwiches and juice or popsicles. I opted for turkey. The man who was admitted on a gurney earlier is now casually talking on the phone, which is an old pay phone style thing attached to the wall. He is dressed in his hospital gown and his hair is a bit wild looking.

Sunday  Started on anti-psychotic drugs this morning and feel really out of it. Just slept all day. It is 6pm now and I have slept the majority of the day. Thankfully, it was without dreams, or with few–I just got interrupted because it was arts and crafts time, which Lydia encouraged me to do and I’m glad. I thought I was too anxious to leave the room, but Lydia said, “Maybe it’ll make you feel better,” and I knew she was probably correct. I joined her, Kathy (also a mother of four), and Katherine, who studied Women’s Studies and had the same professor as I did in undergrad. Katherine is a mother of three. The arts and crafts room had relaxing lighting, vintage 1960s chairs, a chalkboard, and posters about “coping”. The table we sat at was in the middle of the room and the whole set up felt cozy. We had beads and yarn and colorful elastic thread and I figured out that Donna, with her many beaded bracelets, had made them in this group. Judging by the quantity on her wrists, she has been here for a while. Katherine, whose adult children live in San Francisco, impressed everyone with her macrame skills, weaving pink and purple thread together. “I leaned this a long time ago,” she said. (I am writing this in the Day Room and the scraggly, bearded young man is once again chatting on the phone in a casual tone, but I cannot decipher much other than ‘you know what I’m saying?’).

Later  Insomnia, as usual. I am on Trazadone, Ativan, 40 mg of Lexapro, Hydroxyzine, and hydrocodone. I feel pretty calm, but trying to sleep is horrid. I am just inundated with anxious thoughts which I feel powerless over at this point. I’m not hearing things anymore and voices have gone back to normal. No one sounds like Brook’s father anymore. We had “group” tonight in the same cozy little room as the arts and crafts activity. Mary Ellen, a little white-haired nurse who is stylish, moderated. Most people said nothing, but Lydia and I and two other women and a man, who occasionally chimed in, did. They talked about family stress. Children and extended family taking advantage of people. The woman to my left, who wore a bandana over her hair and pajama pants (we are all perpetually in pajamas) said she had a daughter who had seven kids and another daughter who had three or five, I can’t recall. And siblings in NYC whom she raised like children because her parents were off “doing their thing”. All of these family members, she said, constantly need her, and live in different cities; Binghamton, New York and I’m not sure where else, and she takes the Greyhound back and forth to each place all the time. Lydia talked about her twenty-four year old son who has left her to raise his now five year old child, whom Lydia has been taking care of since the child was four months old. She and her husband are generous and let various family stay at the house, although clearly Lydia needs some peace. Her adult son now has a new girlfriend who had a baby and now he cannot be bothered to care for his five year old. The five year old’s mother has five other kids, but only has custody of two of them, as she “can’t deal with boys,” Lydia said. Lydia husband and sixteen year old son help her quite a bit, but since she has lupus and fibromyalgia, it is too much stress for her to care for her grandson. All of the women agreed, as women have done for centuries, that it would be better for them in Heaven, once God finally rewards them for their years of self-sacrifice. Because clearly, there is no earthly reward or recognition.

The entry ends here.

As a historic researcher who has focused on women in early America, it is striking to me how little has changed in many respects from that era. Letters I transcribed from early 19th C. Massachusetts, in which a family of sisters and cousins wrote privately to each other away from men, mentioned the same type of things as were in group therapy at the ward: the constant, unrelenting tasks women undertook for their families and the physical, emotional and psychological turmoil that resulted. In every letter, Heaven was mentioned. These early American women thought of Heaven as a place where they could finally have a nice life, and it certainly seemed to me that they looked forward to dying. Of course, in that era, they were much more likely to die young, and most of them did.

While therapy at the ward focused on self-care and saying no to demanding people, I think Mary Ellen knew that the women patients there could never fully do so, due to the number of infants and children who depended on their care. Also, the patients had low wage jobs with bosses that did not accommodate their health and disability needs which stressed their bodies tremendously, and that was not likely to change.19th C. women in early America worked at home, but it was no less of a job than anything a man did, and required grueling physical labor from morning till night, along with the demands of pregnancy, nursing and childcare. The women I talked to at the ward wanted children, like many people do. They wanted to get married and to have children, but the expectation from their families was that they would take care of almost everything. Their lives did not slow down once their children were grown, as they were often expected to care for the grandchildren, too. Approaching middle age meant that bodies were starting to break down from the stress and lack of medical care. Women in the early 1800s often died by age 50, worn out from hard work and killed by disease.

The psychiatric ward was the only place to get relief, to be cared for, to not have to cook or clean or nurse children. Family members, I learned, were strictly kept away from patients by the hospital staff. It was understood that family was a huge detriment to their patients’ recovery. There was no access to the internet, no cellphones, and if anyone called for you, the staff would take a message and let you know. This was the only way for anyone to heal. As the woman in group who was always taking the Greyhound bus mentioned, her grown daughter would have the grandchildren call her and tell her they needed to see her and were hungry. She could not say no, even though she knew it was manipulative. Another woman in group said that she planned to stay in the ward for a year so she could get away from her family. Christmas, I learned, was a busy time at the hospital; when stress reached a head and led to breakdowns of mental health for many. The patients were not there solely to get away, however, they truly were having very difficult mental health issues. So it wasn’t a resort of course, but the closest thing to it, and required a psychiatric breakdown to enter. Those types of breakdowns are detrimental to brain function and mine took months to recover from, although I left the ward after a week because the medication they gave me worked so well. I received around the clock care from nurses and doctors, and was given a wrapped Christmas gift by Mary Ellen, as was everyone. There was a Christmas tree and decorations on the ward and patients spoke excitedly about what the gifts might be this year, as some knew from previous visits to expect one. When i left, Mary Ellen told me, “Come back anytime.”  I took her words to heart, and know I have a place to go again, should I need to. And I probably will.