A few months ago, I got an email from a reader asking what it is like to be deaf. Not what access issues and barriers surround being a deaf person, but the actual feelings and sensations of being deaf. At first, such a question, framed as ‘not having one of your senses functioning properly’ was disconcerting – as I subscribe to the social model of disability, rather than the medical model. In recent years, however, I’ve begun to look at deafness and disability in a much more expansive way – being deaf is just different.
It isn’t better or worse than having hearing, it is just a different experience of the world. Yes, there are things that we need that the general hearing populace wouldn’t think about in day to day life, such as subtitles, captions and visual information, plus better communication (which, in my opinion, is important for everyone, not just deaf people), but I feel that everyone has certain things that make their day to day life different in some way from the next individual.
Being deaf from childhood, though, means my experience of deafness is different to people who have late-onset deafness or become deaf later because of illness. Or those people who have moderate or mild deafness. Or are partially deaf. People describe themselves differently – as hard of hearing, deaf, profoundly deaf, hearing impaired (which is one label I personally loathe), and there is also the big D little d thing, which I think is going out of style amongst younger deaf people.
Medically, I’m described as ‘profoundly deaf’ and I’m sure there’s something else in there too, to do with frequencies on a hearing test. Having said that, there are a few things you need to know – every single deaf person is different. There are some aspects of our experiences that diverge – access to things the main thing, perhaps attitudes we have experienced, the way we process information, usually visually (however, this can also differ from person to person) – but there are others that don’t.
The history of my deafness began when I was six years old – my Aunt noticed I wasn’t responding to the phone ringing – and my hearing was tested again. It indicated that I had high frequency progressive hearing loss (which means that I couldn’t hear sounds in the higher frequency and that my hearing was likely to experience drops as I got older). From then, I had a few hearing drops, the most significant one when I was about 13, and I stopped being able to hear sounds without my hearing aids.
I used to hate wearing hearing aids but now I wouldn’t go without them when I want to hear sounds. They are a part of me, even though I also value not wearing them and the near-silence (apart from the musical tinnitus!). I have had a few epiphany moments – I remember feeling self conscious about being deaf when I was an early teen, but then I also remember a feeling of quiet and confident acceptance of deafness being an irrevocable and important part of who I am.
That acceptance may have been compounded by having a sister who is also deaf, and having parents that have never made us feel inadequate. The audiology doctor I had when I was young was fantastic because he always reassured my parents and encouraged me to follow my interests. I never felt angry or misunderstood as a child because of being deaf. I had the usual issues with friends and sibling rivalry, but never felt as though I wasn’t capable.
I did experience some frustration at Primary School because of lack of support and teachers who didn’t understand how to include a deaf child, but for the most part, I muddled through and did a lot of reading, art and crafting! Secondary school was a completely different kettle of fish – simply because of the growing pains of being a deaf teenager.
So what it is like being deaf? There is no easy answer, and something that might take a lifetime to explain. I know what it’s like to hear – because I could once hear things without my hearing aids – but do I regret not having that hearing? Not necessarily. I’m not alone in silence, my mind is not a silent place, and there is no sad romanticism connected to being a deaf person.
A lot of the time, the battle and silence comes when we go out into the world – and find that the world hasn’t adapted itself enough to accommodate our needs – subtitles, captioning, sign-language interpreters, visual information, attitudes, government attitudes and legislation; the silence that comes from people who don’t understand or who are ignorant of the needs of deaf and hard of hearing people. There are many issues surrounding the institutional and social barriers that create a harder life for those of us who are deaf.
The actual fact of deafness itself is something everyone lives with differently. For myself, I can’t imagine a life without it: if I wasn’t deaf, I wouldn’t have met so many interesting and creative people, I wouldn’t have met Dan (we met online, and I only joined Bolt.com because a deaf friend recommended it) and I wouldn’t be as close as I am to my sister. My Mum wouldn’t be a captioner. It has had a positive ripple effect in my life, and the lives of those I consider friends, family and acquaintances. It has affected the way I see the world – my values and my opinions, my empathy and sense of justice. Perhaps I would be less aware of injustice and discrimination if I wasn’t deaf; it has taken me out of my own experience, and made me want to do something meaningful for other people. I seek out the fringe, the shadow-dwellers who have meaningful perspectives on the world and life.
Let me bring it back to the title – A Symphony. Deafness is a communication – a symphony that has peaks and troughs, moments of clear high clarity and valleys of sadness. It is a march towards progress – of the need for good communication, the right to have good access, to be seen as individuals with our different strengths and skills. It is the balance between experience and identity.
‘My soul is a hidden orchestra; I know not what instruments, what fiddlestrings and harps, drums and tamboura I sound and clash inside myself. All I hear is the symphony.’ - Fernando Pessoa, The Book of Disquiet