Humaira’s dedicated Dad
It can be unusual for fathers in some South Asian communities to be closely involved in their children’s care, but Miladur believes dads have a bigger role to play.
It was when their eldest Humaira was diagnosed aged one as profoundly deaf that he stepped up and became more involved with her care. “We were shocked at the diagnosis,” says Miladur. “Nobody in our family history was deaf. It took us a while to accept it.
“Then the choice was cochlear implants or sign language. We wanted to hear both sides of the story – it’s good to know the view of the Deaf community. But she comes from a hearing family, so we finally decided we wanted to maximise her hearing and work on developing her speech.”
However the couple were refused funding for a second implant for their daughter. “It was a blow,” recalls Miladur. “But as a parent I was going to challenge this decision, at least then I’d know we’d done the best we can.”
So he appealed, getting letters of support, including one from the National Deaf Children’s Society. Within a week the decision was overturned and the second implant went ahead successfully.
But Miladur has no doubt that he has an advantage that many parents of deaf children in BME communities may lack. “I have a local government background so I know how things work,” says Miladur.
“I researched guidance issued by the National Institute for Health and Clinical Excellence (NICE). I obtained letters from various professionals to support my appeal and copied in everyone on my appeal letter, including my local MP and the chief executive of the primary care trust.
“English isn’t their first language so it’s even harder to break through barriers.”
"But many BME parents don’t have this knowledge. They get letters from public agencies full of gobbledegook and, for some, English isn’t their first language so it’s even harder to break through barriers.”
More challenges followed. First he contested a decision about the rate of Disability Living Allowance their family was awarded.
Then when they were turned down for a school they’d chosen for Humaira for its experience with deaf children and good acoustics, he appealed with the help of a National Deaf Children’s Society education appeals adviser. The decision was overturned and Humaira, now five, is progressing well since she started last September.
“There is stigma attached to deafness and disability in BME communities.”
Miladur believes there are other issues facing deaf children in BME communities that need attention. “There is stigma attached to deafness and disability in BME communities,” he says. “It’s a fear of something that’s different, not normal, and people automatically assume it’s a problem – they think if they can’t hear, they can’t understand. We need to tackle this negative labelling through education.
“I also believe that professionals from health, education and council services need to be more culturally aware and redesign services according to the needs of BME communities. Maybe that’s why I’m inspired to get on board, I’d like to see professionals in health and education doing more.”
His experiences of standing up for Humaira’s rights told Miladur he was right to get involved in her care and challenge the traditional roles allocated to men in BME communities. “In our culture, even more than in the wider culture, we’re inclined to place the mother at the centre of raising children,” he explains.
“The thinking is that fathers don’t get involved with children’s care, they’re just breadwinners – but a father can play an important role in the family.”
“The thinking is that fathers don’t get involved with children’s care, they’re just breadwinners – but a father can play an important role in the family.
“We also tend to categorise everything according to the duties of men and women and this mentality can be dangerous as it reduces everything to black and white. But attitudes are changing with second and third generation Asians.
"Also, with more Asian men finding better paid jobs, more flexibility and working fewer hours than their parents did, it will slowly lead to a shift from the traditional roles that men play.
“I got involved in my daughter’s care because I want to build a strong bond with her and give her the best education, strong morals and values. That’s my role, far bigger than being a breadwinner.
"And my wife has support from me so it’s easier for her. Looking after a family full time is hard work.”
“My daughter is deaf but the sky’s the limit with the right support.”
The couple found out that Humaira’s deafness is due to the Connexin 26 gene and they are in the process of having their other daughters, Rumaisa, two, and Sara, one, tested. It’s an emotional time for them, but they know their experience will help them if needs be.
Now Miladur is determined to help other BME families. He has signed up as a National Deaf Children Society volunteer and completed training to deliver parenting courses to groups of BME families, focusing on issues including improving self-esteem and avoiding attracting labels.
“I’ve experienced it – if other families want help I’ll do it,” says Miladur. “My daughter is deaf but the sky’s the limit with the right support. I want to help other families in the same situation, and I want to inspire other fathers to get involved in providing their deaf child with the opportunities to flourish and lead successful and independent lives.”