It is easy to be swept away by promises of miraculous cures for incurable diseases.
The universe has a strange sense of humor, as I am writing this I am getting over a virus and I’ve temporarily lost hearing in my right ear going on 3 weeks now. For me, it’s fluid behind the eardrum, but for this reason I finished this novel thinking about how important losing your hearing is for those born with it. I’ve had several family members lose their hearing due to cancer, old age, as well as damage from working around loud machinery. Most of us are ignorant when it comes to disabilities that don’t directly affect us, in fact before reading this I hadn’t really understood that people need to learn to hear when they get a cochlear implant. It’s hard to understand that a person, with the aid of hearing implants, doesn’t hear the same as those of us with properly functioning ears do. Before my own father started using a hearing aid I didn’t know how it distorted some sounds, magnified others and how awful it is for him to hear when more than one person is talking. As with anything else about humanity, there are different ways of being deaf and ‘cures’ and ‘aids’ don’t work for everyone, nor are they necessarily desired.
The conversation about embracing Deaf culture is a personal one, particularly to those born deaf. To many people, it’s not a matter of ‘curing’ something they never lost in the first place. Other people’s expectations of what makes a person whole doesn’t take into account their needs, their decisions. Reading about parents searching for cures it’s heartbreaking for both the child and the parents. For those who want to restore their hearing every new invention and scientific breakthrough can just be one more disappointment to bear, some more dangerous to one’s health or outright deadly. While Jaipreet Virdi shares a history for the deafness cure, too she interjects her own personal trials and tribulations in defining her own place in the Deaf community. Jaipreet was not born deaf and therefore her hearing loss doesn’t “ fit with the discourse of deafness and Deaf culture, because most Deaf people were born deaf and thus, never had any hearing to lose.” Her goal is to “enrich our understanding of an unrepresented aspect of deaf history: that of the medical and technological avenues for “curing” hearing loss.” These cures involve everything from airplane dives, chunky devices, and all sorts of “Electrical Wonders.” Even advertisements that shame women for their unfashionable hearing apparatuses is simply just another way to demean a person and make a ton of money off a medical condition.
There are, of course, those in the medical community who made discoveries that were great strides in medical science but for every genuine, qualified doctor there were quacks and frauds. Factor in the exuberant cost for treatments, cures, and hearing devices and people have no other option than to purchase what they can afford, generally for products that did more harm than good if they worked at all. Loving parents that were well meaning hunted for cures largely because in the past the fear their child couldn’t manage in a world that doesn’t support disabilities caused alarm about their child’s future. Society tends to attack anything that is ‘different than’. Their fear that their child couldn’t survive without the ability to communicate as the majority demands placed them on quests to try anything to cure their Deaf child. But what of the child forced through treatments that are often more painful than not? As an aside, this happens with all sorts of illnesses, defects, disabilities that are physical or mental. The truth is, most parents want to make their child’s future one where their child will be safe, functional long after they are no longer around to care for them, it often comes from a place of love. Yet there are two sides of this coin.
What of the child like Jaipreet Virdi who has had to learn how to live between two worlds, that of hearing and the deaf, feeling she isn’t planted firmly in either? People often forget how important hearing is to language, for it is through hearing others speak as well as our own voice that we can pronounce and enunciate. A not so simple skill most of us take for granted. Hearing, in the end, matters and is just something most of us don’t think about. As we age, hearing as much as sight is a sense that tends to go. All of us are prone to illness and injury, that can easily end in the loss of hearing. It’s easier to not think about our senses, until we or someone we love loses them.
How can we not empathize with the need those born Deaf have to embrace their own community, feeling whole as they are? Sometimes we fail to understand that all over the world people have their own way of existing, it may be different from our own, but it’s not less. How much of oneself is anyone expected to give up to fit in, particularly when you lose more of yourself? We all must measure our own happiness, and create a place for ourselves, why should it be any different for someone with a disability? With that said, it wouldn’t hurt to educate ourselves about the difficulties others confront, to at least try to understand each other better and respect personal choices.
This book is full of hearing history, which is shocking and sad as well as fascinating. It’s part memoir and medical history/science. Maybe I was more interested in this book having witnessed the frustration of those who have lost their hearing. Seeing firsthand how someone is dismissed when they can’t communicate what they need to. I don’t always think other people are cruel (though such people do exist) I think they just don’t know any better, which again comes down to “unrepresented aspects” of hearing loss and many other disabilities. In a world as populated as ours, there really isn’t an excuse not to educate ourselves. There is a line that stayed with me, “We marvel at how people pass as normal by hiding the signs of disability.” Why should they have to hide?
If you’ve ever been curious about the world of the hearing impaired or Deaf (which is the same world you share) this is an informative read.
Publication Date: May 1, 2020
University of Chicago Press