“The world I had been part of could no longer hear me.” How one mother gave up everything for her deaf daughter. Jo Bowie shares her story
I was a mum at 19 and had travelled with my daughter to lots of places, from Ardnamurchan to Africa. I took everything in my stride and was not afraid to speak my mind. I was actively involved in politics and very much part of it all. Then along came my second daughter, Poppy.
Poppy’s deafness was recognised when she was about 14 months old. She passed all the ‘shake a rattle’ hearing tests and had to be sedated for the brain stem test. That was a strange moment, Poppy’s point of recognition, as I prefer to call it.
I knew that deaf people used sign language and asked if there was help for me to learn to sign. The reaction was just a bit off. For some reason they wouldn’t commit to that, but told me there was help available and they would make her an appointment with audiology.
I didn’t understand something, but wasn’t sure what. It was like they were missing the point. I was in the honours year of a joint degree in Psychology and English: I understood the need for early language acquisition.
What followed was a strange journey indeed. There was actually no support for me to learn to sign. It seemed all the money that was to be spent by the authorities was on hearing aids, oralist peripatetic teachers and an offer of a cochlear implant.
I repeatedly asked for support in learning BSL. I even got a professor from the Department of Psychology at Strathclyde University to write me a strong letter of support, outlining research findings. But Strathclyde Regional Council refused to help.
The world I had been part of could no longer hear me.
The BBC book and video were my introduction to BSL, while I waited for a stage 1 class to come. Every Monday morning, I cycled with Poppy from the west end of Glasgow to the east end, to attend the Deaf mother and toddler group, where all the mothers were Deaf and all the children were hearing, except us. It was hard: I had gone from being part of it all, to feeling alienated.
Then we went to look at schools. At the first one I signed to Poppy that she could go and play with the other children and I would talk to the head-teacher.
I was utterly shocked. Poppy started at the other Glasgow school at two and a half and it was ok-ish but when the head-teacher said she didn’t think Poppy was profoundly deaf because she was so bright, it really threw me again.
I felt I had entered into a weird world where sense did not prevail, but prejudice did.
The people who I had expected to help at the hospital only valued their own agenda: they wanted me to give my daughter over to medical intervention, for her to become a site of scientific experimentation.
Luckily, in the midst of all of this I called the SLIC number and spoke to Margo Currie. Suddenly there was a voice that made sense. Tears still come to my eyes when I remember the relief of that moment.
That was the help I had been waiting for: I went on Margo’s residential BSL course and learned the basics of the Deaf way and Deaf history. I then got a place at the Centre for Deaf Studies at Bristol University and moved there from Glasgow with my two daughters. I left my friends and family in order to ensure I had the language skills I needed for Poppy. At the time I was offered a funded research post here in Glasgow that would have led to a PhD in Psychology, but my daughter’s need for language was more important to me.
In Glasgow I had passed stage 1, but the stage 2 classes would be set up and then fold because of numbers and finance. Poppy was taking my rubbish signs and converting them into beautiful fluent BSL, I was struggling to keep up! And she was only sleeping two to three hours a night, which I put down to under-stimulation.
So we moved to Bristol, where the school for the deaf embraced bilingualism and I did a two-year course in Deaf Studies (Interpreting). We stayed in Bristol for 20 years, because the level of Deaf Awareness was much better than in Glasgow. I couldn’t come back to Scotland because I did not trust it would be a healthy linguistic or educational environment for Poppy.
I am now back in Glasgow and delighted that the Scottish Government are legislating for the promotion of BSL. I rejected the medical model and their interventions because I already loved Poppy and did not want to risk hurting her in return for the hope of her being able to hear better.
The NHS approach to medicine is not the only one in the world. I believe that we are all equal and we all bring something different to the table. What a dull feast it would be if all the dishes were the same. Respect and patience can bring rewards that we could not have imagined. I could never have imagined the journey involved in being the hearing mother of a deaf child.
Embracing a cultural model of Deafness brings with it a new set of responsibilities. The Scottish Government recognises the importance of supporting BSL as a language first and then improving access to services and information in BSL.
Will there be a move away from the medical model, to one of acceptance? If families were given an objective induction course on a residential retreat, so that they are open to the range of perspectives on deafness, then at least the families could make their own choices, over time.
With 90 per cent of deaf children being born to hearing parents, who know little or nothing about deafness, there is surely the need for such a service.
I believe the current bias towards the medical model of deafness is immoral. Hearing parents are vulnerable when their babies are identified as deaf and before they can get used to it they are offered a cochlear implant that will make the ‘bad’ deafness go away.
Instead I would prefer to have a society that asks what gifts deafness brings.
Published in BDN March 2015 issue