BATOD
The British Association of Teachers of the Deaf
Promoting Excellence in Deaf Education

Bringing teenage deafblind cochlear implant users together

Louisa Booth, Advanced Bionics UK

Sense, the organisation for deafblind people, has collaborated with The Ear Foundation and through them with cochlear implant centres across the UK, to bring deafblind teenagers with cochlear implants together for the first time. It is tough for deaf teenagers to acknowledge increasing visual difficulties, so we were pleased to see teenagers, accompanied by family members, attending from as far afield as Belfast, Aberdeen, Nottingham and London. Two young deafblind adults, Emma and Clare, from the UCL cochlear implant programme, also attended to act as role models.

Connor, from Belfast, has KID Syndrome and the other teenagers have Usher Syndrome and they face the knowledge that although they can see something at present, their vision may deteriorate. It was therefore great for them to meet Emma and Clare, who talked honestly and enthusiastically about work, social life and their extensive travels. Emma, asked what she liked best about her implant, thought it was probably the fact that it had saved her life. One night, while she was travelling alone, in Sri Lanka, she was walking back to her hotel and simply did not see it. She walked straight passed the hotel, down a road that led into the wilds and then suddenly heard the noise of someone shouting behind her. The sound made her turn and notice the hotel she had missed. As she talked, horizons opened up for the teenagers and, indeed, for all the adults. Deb Wilson, from The Ear Foundation and Louisa Booth, from Advanced Bionics, then led a discussion amongst the teenagers. What became increasingly clear is that whilst, understandably, the parents were concerned, the teenagers themselves were keen to face the world, preferably independently.

The day was sponsored by Advanced Bionics, Cochlear and MedEL and also by Pizza Express, who generously donated a room to meet and lunch, thus giving the teens a taste of ordering food in a restaurant. After lunch there was a London Bus ride, a walk along the Thames and a trip on the London Eye. Altogether, it was a really good day and we urge anyone working with a teenage cochlear implant user with visual difficulties, to contact Sense, The Ear Foundation or Advanced Bionics about the next meeting.

Visual difficulties? Make contact... Advanced Bionics UK Tel: +44 (0) 1223 847 888 Fax: +44 (0) 1223 847 898 email or visit the website www.bionicear-europe.com

The Ear Foundation Tel: + 44 (0)115 942 1985 ( V&t) Fax: +44 (0)115 924 9054 email or visit the website www.sense.org.uk

March 2005