. . . revealing the social impact of hearing loss
In ”Life and Hearing Loss – Part 1”, I ended with the following summary:
Practices such as keeping alert for sounds of speech, checking to see if the voices are meant for you, and custody of the eyes are defense mechanisms the hearing impaired develop in a world that is fundamentally indifferent, at best, to disability. And they don't go away when you get hearing aids. They stay with you for life. I still practice them all.
That was just the beginning of my journey with hearing loss. I have had nine pairs of hearing aids over the years. Once I got hearing aids, my life generally improved for about 25 years. The last 14 years have been an increasing struggle. When a hearing loss reaches a certain point of severity, there are profound social consequences, which the above paragraph doesn’t begin to address.
Beginning in 2009, I was a participant the four-year program of the Episcopal Church, Education for Ministry (EfM). We studied the Old Testament, New Testament, Church History and Theology as a community of faithful: worshipping together, breaking bread together, engaging in theological reflection together.
In the third year I began to have real problems hearing, even though I had a new pair of hearing aids. I repeatedly asked the class (I think we were 7 or 8 at the time) to speak louder, although it was only two individuals with whom I had real difficulty hearing, and those two seemed to completely ignore my requests.
What follows here is a letter that I wrote to the class and read aloud. It was a painful letter for me to write and it’s a painful letter for me to read -both then and today. But it contains descriptions of very pertinent and profound social repercussions not only of hearing loss itself, but the cluelessness of people.
In reading over the letter, I realize that it doesn’t describe everything that happened in a way that you can grasp the context surrounding the letter. But that’s not really essential. What is essential is the distress and the social consequences of severe hearing loss.
Finally, the response by the class to my letter was mostly positive. Of the two people who spoke either too softly or to swiftly for me, one responded that now he understood my difficulty and would try to remember not to talk so fast; the other gentleman, a hospital social worker, said: “You know, Barbara, you don’t present as a person with a hearing loss.”
I responded, “It may be that I don’t present as hearing-impaired, but I have told you many times that I am hearing-impaired, and I have asked you to speak louder. Does the fact that I don’t present as a hearing impaired person mean that I’m lying?”
He had no answer.
As to my not presenting as a hearing impaired person, if you read my experience in Part 1 when I first became hearing impaired, I think you can understand that I worked very hard to not present myself that way. Herewith is the letter:
To my classmates:
Last week I talked about the status of my hearing, and I came away feeling that I hadn’t successfully conveyed the personal truth I wanted to share.
I have been struggling with my hearing lately despite new hearing aids. When I talked last week about the Easter service I attended, I didn't mention that the only thing I could hear and make sense of were the bells and noisemakers, which is a joke really, because what sense is there to be made out of bells and noisemakers? Although I could hear the faint sound of the priest speaking, I could not actually hear the sermon. Since their liturgy was a hodgepodge of liturgies from all over the world, I could follow the service and the scripture readings only because they were printed. The choir sounded like static to me. I couldn't sing the hymns because I couldn't hear the organ clearly and couldn’t match my voice to the music. This is the current experience of one who used to sing in concert choirs in high school and in college, and even in my thirties before I lost my hearing.
I have been hearing impaired for 36 years – half my life. Before my hearing loss, I had no idea what it meant to be hearing impaired, how the hearing impaired experienced the world. Having spent half my life as a normally abled person and then one with a disability, I know how difficult it is to understand the needs of someone who has a disability. However, I am more needy than I have ever been and, since I can no longer solve all my hearing problems by myself, as I have done in the past, it becomes a communal issue and I need your help.
In bringing the issues of my disability before you, I feel as if I’m walking a fine line. On one hand, I need to come out of isolation and advocate for myself as I once advocated for others as a member of the Bethsaida Team. I am a member of this EfM group, and I am advocating for myself. That is a different dynamic than general advocacy and one I fear that could lead to misunderstandings and hurt, which is far from my intention. I am also concerned that individuals who have expressed their concern and support for me privately might feel that their reaching out to me is unappreciated. That is far from the case, but there is a difference between individual support and communal support, which is what I need here.
When I was on the Bethsaida Team we did workshops in churches to try to give congregations an inkling of what it might be like to live with a disability. Unknown to the Bethsaida Team, one congregation we worked with had a member who was hearing impaired and had appealed in vain for understanding from her community; after church, one of the parishioners who wore sound canceling ear plugs during the entire service told her fellow parishioner that she finally had some understanding of how hard the woman had to work to participate In church life.
I struggle to stay with the discussion and use 100% of my mental and physical resources to try to make sense of what I hear. Sometimes, even after putting all my energy into listening, I still don’t get what was said. At the end of a meeting I am exhausted.
Over the years I have had seven pairs of hearing aids. Up until about two pairs of hearing aids ago (not including my current hearing aids), the aids compensated fairly well for my loss and I was able to function in most situations. But starting with two pairs back, a number of situations were beyond my reach. Not too long ago I attended a lecture that Brueggemann gave at St. Andrew and Holy Communion. Although a portable speaker system was being used, I could not understand anything that Brueggemann said despite putting my concentration and will to the task of listening. My frustration at not being able to hear and its emotional impact was such that at the end of the evening I went home in tears.
When I said last week that my existential world was getting smaller, I meant that literally. The rooms in which I can hear and function are getting smaller and smaller. This affects the kind of events that I can successfully attend, not to mention those in which I can actively participate. An intellectual life consists of more than reading books. Lectures and opportunities to discuss ideas with others are necessary for growth. When your contact with the creative and intellectual is limited by your ability to hear and participate, the quality of life diminishes.
There are also social ramifications. Even in a group as small as ours, when we are standing around (before or after class), if two or three people are talking to one another, I can't tell whether it is a private conversation or one to which anyone can join. Because I don't know that, I tend to hang back or walk away because I don't want to seem to be invading anyone’s privacy. And this is in a situation where I know the people. Can you imagine what I feel when I walk into a room full of strangers? Hearing loss affects social interactions and hearing impaired people are vulnerable to becoming isolated. This is one of the reasons I’m having trouble finding myself a new church community.
Language skills are also affected. In writing this, I was appalled at the mistakes I made with subject/verb agreement. And I don't know if I've caught all my errors. I’ve lost vocabulary and, where I was once a skillful extemporaneous speaker, I find myself often tripping over my words. Although others have said they don’t notice, I notice.
My experience here last week left me feeling very alone in this class. I'm tired and I'm scared and I don’t know how to reach all of you. I know that it is hard to understand the challenges I face, and I know that hearing loss being an invisible disability there is nothing obvious to remind you that I need to you speak sometimes louder, sometimes more clearly, but especially, I need you to be more aware.