Talking Sense - Volume 45, No 2, Summer 99
In every walk of life people have strong feelings of identity; of their cultural, ethnic and social roots. Georgia Veats talked to people with Usher and their families and found that as well as their cultural backgrounds, people often encounter complicated issues of identity associated with their dual sensory impairment.
31 year-old Nadeem Alvi describes himself as ‘British with Pakistani roots’. Educated in England, Nadeem was not diagnosed with Usher Type 2 until he was 28. In his early years he was brought up around hearing people and felt very much part of their world. But on starting at a deaf school, Nadeem found a new community outside his Asian family and friends which he had a lot in common with. "At the time I felt a strong sense of belonging with deaf people," says Nadeem. "I became friends with one of only two Asian children at the school. Although my friend was Hindu and I am Muslim, we still had many common experiences as deaf children that brought us together."
Finding the Usher family
Nadeem’s diagnosis was a big turning point , motivating him to start on a long journey of discovery. "I started to move away from the strong influence of my family and cultural background and on to a search for myself."
It was at a conference for Asian deaf people in Los Angeles that Nadeem first saw a poster advertising a workshop for people with Usher. "I’d missed the workshop," he says, "but just seeing the poster meant so much to me as I meant there were opportunities to meet with other people with Usher."
Nadeem’s search continued until he was referred to Mary Guest, Head of Usher Services for Sense. "Making contact with Sense made an enormous difference to my life," says Nadeem. "I found out so much more about my Usher and was put in contact with Usher UK, a network of people with Usher across the United Kingdom. This has given me access to a growing Usher community. It was a chance to find friends who have Usher, some of whom are Asian."
As Nadeem came to terms with his Usher syndrome he realised he had not lost contact with his Asian background. He remains close to his family and despite their initial problems in coming to terms with his diagnosis, they continue to support him. Nadeem has also been able to combine his cultural roots with his links to the deaf community through volunteer work with the London Ethnic Minority Deaf Association (LEMDA). "I feel that the work LEMDA does is very important. There is a much lower awareness of deaf issues in some ethnic minority groups and LEMDA can provide information, counselling and even interpreters to overcome communication problems arising from both language and hearing impairment."
Marriage issues
"I am particularly aware of issues surrounding internal marriage within the Asian community," says Nadeem. The cultural and religious traditions of marriage amongst close Asian communities and extended families increase the chance of children being born with genetic conditions such as Usher. "I feel very strongly that the dangers of these marriages should be promoted more within Asian communities," says Nadeem. In the future he would like to marry a woman within the Asian community but is still waiting for the results of a genetic test to tell him whether he is carrying the Usher gene. "I am very aware of genetic issues and would like to meet with some married Asian people who have Usher to ask them how they dealt with these issues."
The Soomro family
Ali Soomro and his wife Nasim are an Asian couple who have four daughters, two of whom have Usher Type 1. Following Pakistani tradition Nasim and Ali came from the same extended family and, like Nadeem, they are both now aware that this is likely to have caused their two daughters Ghulam (12) and Sana (2) to develop Usher. "When Ghulam was diagnosed I talked to my parents back in Pakistan about Usher syndrome and the importance of broadening the circle of people my family marries within," says Ali. "However tradition is very strong amongst my community in Pakistan and my brother has still subsequently married Nasim’s cousin."
Ali and Nasim came to England when Ali was offered a scholarship to study satellite communications, They have lived here for just over four years and both still feel a strong bond with their culture and community in Pakistan. Their daughter Ghulam was diagnosed with Usher Type 1 shortly after arriving in the country and family’s stay in England was extended following the diagnosis of their youngest daughter Sana with Usher Type 1 last year. Like her sister Ghulam, Sana has had a cochlear implant fitted which, it is hoped, will improve her hearing in the long term.
Communication difficulties
Ghulam is studying at a school for deaf children and this raises issues of culture, social groups and communication for the family. As a student in a deaf school Ghulam is growing up within the Deaf community; has deaf friends and is learning to lip-read and communicate using British Sign Language (BSL). So far neither Ali or Nasim have had the chance to learn BSL and are learning the signs from Ghulam. `We do not understand all of Ghulam’s signs, but we are learning’ says Ali. Ghulam also has problems lip-reading Ali and Nasim as their accent forms lip shapes which are different to those of her teachers and friends at school.
Communication has also been an issue for Nasim and Ali when meeting with other parents. Nasim attends an Asian Carers Group for families with children who are disabled. "I don’t speak very good English at the moment" says Nasim, "and as most of the Asian people are either British-born or have lived here a long time they often speak English and I cannot understand them. Mostly I just go along and listen." The most rewarding experience for the Soomros so far was a meeting arranged by Sense Usher Services with another Asian family who have a 20 year old son with Usher. "It was very helpful because we could all communicate easily in the same language," says Nasim. "We had chance to see how their son has progressed through life and were reassured about the future for Ghulam and Sana."
Ali and Nasim may go back to Pakistan in the future, but they are aware that the response to Ghulam and Sana within their community there would be problematic. "Having disabled children is a very big thing in our community," says Ali. "Traditionally disabled people are cut off from society and only get sympathy from blood relatives - this is particularly the case with daughters. We have found that friends in Pakistan or those in England who hold strongly to the Pakistani culture are very uncomfortable around Ghulam and Sana. However, Asian friends who have lived in Britain for a while and have embraced more of the British culture are much more accepting of my daughters."
Nadeem echoes the Soomro’s experience; "There is a stigma surrounding people with Usher across all cultures," says Nadeem, "but I feel it is a lack of understanding rather than a call for segregation." However he feels there is a brighter future which will benefit children with Usher like Ghulam and Sana. "Through my involvement with groups such as LEMDA, Sense and Usher UK I feel I am doing my bit towards more awareness of Usher among all cultures and creating a voice for Usher people as a community in their own right."
For more information on The London Ethnic Minority Deaf Association (LEMDA) call minicom +44 (0)20 8522 1958, fax +44 (0)20 8522 1842 or voice +44 (0)20 8522 1700.
