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Sunday, 4 February, 2001, 00:06 GMT
Deaf children's charity targets Asians
Thorn Park school
Bradford's school for the deaf has 70% Asian pupils

By BBC News Online's community affairs reporter, Cindi John

The high rate of deafness among South Asian children in West Yorkshire has led to a new project by the National Deaf Children's Society (NDCS).

The three year scheme will provide an Asian outreach worker whose main role will be to make contact with non-English speaking parents of deaf children.

Recent research by Bradford Social Services showed that about five in 1,000 children of Pakistani origin in the area were hearing-impaired compared to one in 1,000 children across other racial groups.

In the last study by Bradford five years ago, South Asian children made up well over half of all children with hearing impairments registered with the council though people of Asian origin accounted for only around 15% of the city's residents.

Complex relationships

Professor Bob Mueller of the West Yorkshire Genetic Service at St James Hospital in Leeds has conducted research with 58 Pakistani families in Bradford.

Bob Mueller
Bob Mueller: Studying pattern of Asian deafness
He began his study after being alerted to the fact that a high number of children with hearing impairments were inter-related with many of their families originating from the same area of Pakistan.

"We became aware that some of the families were related in a very complex way, not just the parents were first cousins, they often were much more complexly related," he said.

However Professor Mueller believed other social and environmental factors also needed to be taken into account.

"In cases where people marry within the family that won't necessarily be the cause of problems in a child but if there is a recessive gene in the family the risk will be greater.

"They have about twice the risk of having a child with problems which may be due to a recessive gene if they marry within the family," he said.

Professor Mueller said the research had led his team to identify a gene known as Connection 26, a major cause of hearing impairment in people of western European origin, as the reason for deafness in three of the families studied.

He added the researchers had also identified nine other recessive genes in the study group and were trying to determine how common they were in the South Asian population.

Support needed

The NDCS project in West Yorkshire will be co-ordinated by its Bradford representatives.

Fiaz Quddus is co-chair of the Bradford Deaf Children's Society. Her husband, Abdul, is also on the committee.

Fiaz and Abdul Quddus
Fiaz and Abdul Quddus: 'Many find it difficult to access services"
They became involved with the NDCS after their son was born profoundly deaf.

Mr and Mrs Quddus, who are first cousins, said even though other family members had hearing difficulties they had never imagined any of their children would be affected.

"We didn't know much about deafness before that at all even though it runs in the family but we didn't have much to do with it until we had our little boy. He wasn't diagnosed until he was about 10 months old," said Fiaz Quddus.

Their son is now seven and able to hear after an operation to install a cochlea implant.

But Mr Quddus said their experience had convinced them of the need for an outreach worker to help others, especially those for whom English was not their first language.

"We're reasonably well educated and we found it difficult to get the information we needed so these people who are struggling with their English have got very slim chance of getting the information they need.

"At the time we were blaming ourselves and that's when you really need the support which hopefully this outreach worker will be able to provide maybe not directly but being able to point people in direction of help," he said.

'Blame tool'

The Association of Bradford Deaf Asians (ABDA) said high levels of deafness among the Pakistani community were not just down to the traditional practice of marrying within the family.

Nafees Nazir said though he had previously believed a lot of disabilities in the Pakistani community could be traced to so-called 'cousin-cousin' marriages he no longer thought this was the case.

Nafees Nazir
Nafees Nazir: "More cultural support needed"
"Seven years ago I went to a seminar in Bradford where some experts came along from around the UK and actually made very good points about cousin to cousin marriages being used as a blame tool not to do any further research into the issues.

"Because people within the NHS and social services have written it off and been using cousin-cousin marriages as a blame tool the community is not willing to discuss this but I think it has to be thoroughly discussed," he said.

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