I am reading Andrew Solomon’s brilliant Far from the Tree: Parents, Children and the Search for Identity at the moment. It’s about how families cope with having a child with a disability (mental, physical, social) and the loaded choices that sometimes result in crises of identity and domestic turbulence.
Naturally I jumped ahead to his chapter on deafness and it was, in many ways, a tough read. The stories of the families, particularly the personal accounts of the deaf children now grown up, are inspiring but often heart-breaking.
The stories describe so well the cost of the long-term battle waged around the two prevailing deaf education philosophies – ‘oralism’ (an emphasis on spoken language) and ‘manualism’ (sign language), and historical attitudes to deafness which have ranged from pride to shame.
Many of the deaf adults interviewed about growing up in this context had suffered exclusion, isolation, depression and real deprivation.
The book reaches back into the early-mid part of last century to today, proof that the tension between advocates of both approaches still exists, even if the rights of deaf people to use sign language and access deaf education in this ‘manual’ mode have significantly improved.
Solomon also tracks the splintering effect of identity that occurs with the majority of deaf children being born to hearing adults.
Something like 90% of deaf and hard of hearing children are born into families with little to no experience of deafness.
What do these unsuspecting souls know of Deaf culture? Of sign language? Of the complex mores and communication methods specific to a community they have had no exposure to, either socially or in the media? Virtually nothing.
It’s almost like some invisible hand decided to take all of the children born with a shared identity and scatter them far and wide, too far for that community to properly reach them and form cohesive bonds.
At the family level, it’s about something far more personal than that as parents try to work their way back from the shock of the unknown to some kind of understanding. They have to make hard decisions in the dark and live with them. There’s no right or wrong here.
There are, of course, many echoes of our personal story. We have no history of deafness in our family and yet we have a deaf child. We’ve been told there’s probably some genetic cause but it’s very difficult to know for sure. The ‘why’ of it is mostly a pointless exploration and offers no comfort.
Amelia can find out, when she is ready to start her own family, if she herself is carrying a recessive gene which she could pass onto her children. Already her little hands are laden with heavy baggage.
We were also faced with a choice, not of labels, but between diametrically opposed types of Early Intervention for deaf children, namely the oral language approach or a bilingual or bimodal philosophy which offers exposure to sign language, speech therapy and an introduction to deaf culture and communication. In essence, speech only, or sign and speech together.
No one held our hand through this philosophical maze, we just had to wing it and hope for the best. My family took the bilingual road which is neither high nor easy, but let me explain what led us there.
When I found out that Amelia was deaf, I had this odd feeling that part of her no longer belonged to me, but to something bigger, a hidden tradition I knew nothing about.
I also felt, almost instantly, that we needed to give her every possible avenue of communication available to her. She had lost more than two years of language, a time during which other children would have absorbed words and learned to process them. Instead, my girl had been stuck in a bubble, hearing sounds (at best) as though underwater.
Sign, speech, gesture, touch – whatever – I wanted her to have it all.
I refused to accept that sign language would hold her back in some way. This instinctive choice came up trumps because Amelia took to Auslan immediately (she’s not short of expressive gestures) and was suddenly able to translate her thoughts and feelings into something meaningful. And she could learn.
Speech, language and listening skills take much longer to develop and we just didn’t have any more time to waste. Developmental windows were closing, so we jumped on through with two languages to give Amelia the boost she so desperately needed.
I also wanted Amelia to be a part of that ‘bigger something’, that other family I suspected had at least a partial claim to her. If we were to embrace her difference I thought we could also open a door to a place where she was the same, just one of many in a crowd.
My thoughts about Amelia’s so-called ‘otherness’ were brought home to me in a bittersweet moment when my Mum and I took her to her first Early Learning Group run by our Early Intervention service.
It was terrifying, really. We entered a room where everyone seemed to know some sign language and there was a Deaf Educator, JC, co-running the sessions. How would we talk to her? My Mum and I were like rabbits caught in blinding headlights but we pushed through our sizeable fear. For Amelia.
JC was quite aware of (and probably used to) our discomfort, so she didn’t approach us directly at first. Instead, she strode confidently towards Amelia, then only two years and a few months old. Amelia was not a trusting child then and we had never been to this place before so I did not expect her to be relaxed about this approach.
I was so wrong. JC tapped Amelia softly on her arm to get her attention and signed at her to follow. Amelia held her gaze, watched her hands avidly and then followed her like she was caught in a tractor beam. I watched this from the safety of a corner and felt a curious mix of emotions wash over me.
It’s hard to explain, but I felt tears well up in my eyes at the pain of seeing Amelia bond so quickly with this stranger, the first deaf person she had ever met, and with thankfulness and relief that she had been so welcomed by one of ‘her people’.
However strange or overstated that sounds, I have witnessed the positive evidence of Amelia belonging to a culture other than her own family’s many times over.
JC became Amelia’s kinder teacher last year and they were soon inseparable, often found working together on some secret craft project or sharing a story in Auslan.
Amelia showed a clear preference for her non-verbal communication with JC. She spent very little time with the hearing teacher or even with the other children. Amelia learned a lot from JC, about how to express (and explain) herself through sign and how to touch another deaf person to get their attention.
I see the same easy bond when Amelia watches adults signing in the Cochlear Implant Clinic waiting room – there’s a spark of recognition as she watches their hands moving through the air in rapid-fire conversation. She smiles as though reassured by their presence.
When she walks into her deaf kinder class I can tell she is truly at home. Because in that room, all of the children are deaf and she is not the only one who signs. Amelia likes her mainstream kinder okay, but after a term the votes are in and she never stops asking me when she’s going back to ‘lunch kinder’ (so named because we make her lunch together and pack it in her bag).
At pick-up time, Amelia does her routine farewell to the teachers in sign and comes home to me, full of confidence and something not far from elation. Because she belongs.
It’s a great feeling to see your child settling in so well at a new kinder or into a way of being that feels right to her. But I do still feel a little wistful that she is experiencing that powerful sense of fitting in with people other than us.
On this clash between Deaf identity and family, Andrew Solomon quotes one of his deaf interviewees (Cheryl Heppner), saying: ‘Deaf people feel ownership of deaf children…I really struggle in not wanting to interfere with a parent’s right to parent, at the same time knowing that they have to accept that the child can never be one hundred percent theirs’.
I think I have accepted this idea, at least in theory, but surrendering any part of my child’s life will never be easy, no matter what the future holds. Every parent understands that.
But I hope that our choice of a bilingual education might allow us to move between both worlds, rather than having to give Amelia away to one, or hold her in another.
We chose ‘manualism’ so that Amelia could tell us straight away what she needed and also to give her a passport into the Deaf community if she decides to visit later. Her enculturation into this world is well on its way.
For us, that choice sits in harmony alongside our hopes that she will learn to speak fluently too and be able to participate in the hearing world as far as she wants to.
If ever I worry about the decisions we have made on Amelia’s behalf, I remember the teenager I once spoke to about her story, which included profound deafness, cochlear implants and an intensive oral language education – she was the quintessential poster girl for oralism.
She blanched at my question about whether she identified as ‘deaf’ and was justly proud of her ability to speak and excel in the hearing world. When I said to her that Amelia was learning to sign – something she herself was just starting to try – she said, “Oh yes, give her sign, give her everything”.
As a parent, that’s really all I’m trying to do – give her everything to help her now and prepare her for later.