Finding my way to fatherhood

In our culture at home in Pakistan, attitudes to disability are very different to those in the UK. There is a lot of ignorance and lack of understanding. Marriage is a big issue and the man is expected to look after the family. Disabled people are seen as a burden.

For the first two years of married life, my wife and I lived with my parents. When our son Iftikhar was born, my dad worried about how I would cope as a blind parent. He wouldn’t let me carry the baby downstairs in case I dropped him, and he certainly didn’t want me to take Iftikhar out alone.

Challenging assumptions

I have always tried to challenge other people’s assumptions so, like others, I persisted in learning how to be a parent. If I had been afraid to take my son out, he would soon have picked up on it and it would have become a problem.

My wife, son and I moved into housing association accommodation when Iftikhar was six months old. At first, my parents were worried. Lots of people questioned whether we should be moving into our own home without parental support. They didn’t want to let us try things our way. The way I look at life is that if I’m not causing harm or putting anyone in danger then I’ll do it my way. When it came to changing nappies or feeding my son, I just had to feel my way around things.

Usually, my wife would feed Iftikhar but we think it’s important for the sighted partner to step back sometimes. I have always been very involved. Some equipment has been helpful. I used a tactile boiled water dispenser to make up his formula and a talking microwave to heat up his food. Non-slip bowls and trays were also useful for feeding.

There are many aspects of parenting that sighted people take for granted – like being able to kick a ball around with your child, go swimming together and help with homework. I can do most things – I just have to adapt the way that I do them. For instance, we use an audible ball (with a bell) for football or playing catch, so I can hear where it is.

I live a perfectly normal life. Iftikhar is now five and understands that sight is a problem for me. He always holds onto my hand when we’re out. We have never really talked about disability but we’ve devised our own strategies and ways of doing things together. He has adapted really well and learned how to guide me. His knowledge and understanding amaze me!

Of course, it has not all been plain sailing and we do have difficulties. Sometimes, he will hide from me or challenge me, saying “Daddy, you can’t do that. You can’t see”. But I understand this is just normal childhood behaviour. All children will play games and test the boundaries with their parents, whether they are blind or sighted.

I want to take my son swimming but this has proved difficult. I asked, as a disabled person, for help at my local swimming pool. Ideally, I would need an area roped off for us, and someone to watch, but this could not be provided. I am not happy about this and am trying to find a way around it.

I take Iftikhar to family events run by the Royal National Institute of Blind People (RNIB). It’s good for him to learn about other visually impaired people. I plan to take him to Stratford-upon-Avon. It’s the first time that just the two of us will have been on such a trip. It will be a challenge, but I’m looking forward to overcoming any hurdles.

Education issues

I am keen to support my son’s development as he grows. He attended nursery and has begun his first term at school. I arranged a meeting with his head teacher to discuss my needs as a blind parent. I asked for information to be made available to me in Braille or via e-mail. Initially, some home-school information was sent but it was not consistent and Iftikhar’s school report was not sent via e-mail.

I couldn’t read the school books that were sent home with my son, so I supported his reading in other ways, for example, asking him what was on the page and developing questions about the content. If he told me there was a picture of a cat, I would ask him to describe it and tell me what was going on in the picture. I would ask him what letter ‘cat’ starts with and so on. There are many ways for me to become involved.

After further discussions at school, things improved greatly. I set out to build a positive relationship with the staff and was proactive in setting up meetings to review how things were working. I have always been firm but polite in making my needs known. Now the school provides books in Braille so that we can read them together. Just like his peers, Iftikhar chooses a book to take home, but his are also in Braille. We have a set time for reading every day and he is very good at describing the pictures to me.

I am also trying to get hold of some tactile books that we can share together. The Living Paintings Trust provides free tactile books of paintings, which have raised images, for visually impaired people. I suggested to school staff that they use this format and they have agreed to follow up my suggestion.

Working with a visually impaired parent is a learning curve for the school staff but they have been understanding. They have a special needs unit for disabled children so there is already an awareness of disability.

I raised the issue of becoming a school governor. At the time, there was no vacancy, but when one arose I was selected as a governor. In this role I am more involved in school life and have a greater input. It is a two-way process between the school and parents. I do whatever I can to support Iftikhar’s learning. He has a talking learning book, a computer which produces sounds and speech as he uses it. I will also ask the RNIB about Braille alphabet tiles that I can use with him to make words.

Cultural norms

In 2006, we visited my wife’s parents in Pakistan. The people in their village have never known anyone with a visual impairment. In the UK, I rely on my white cane when I go out but in Pakistan the use of a white cane is considered unacceptable. My in-laws were a little overprotective. I was practically frogmarched down the road! It was quite a shock as I am used to being independent. Hopefully, I was able to challenge some of their perceptions. I even took a Braille book, to show them how blind people can read.

Now, we live in a privately rented property and my parents have more confidence in me as a parent. They understand that I know my own limits, can adapt and find ways to do things. We are thrilled to be expecting our second baby in July. There is a chance that this child may be blind but that is something for which we are well prepared.

Useful organisations

Royal National Institute of Blind People

Tel: 020 7388 1266
E-mail: helpline@rnib.org.uk
www.rnib.org.uk

The Living Paintings Trust

Tel: 01635 299 771
E-mail: info@livingpaintings.org

www.livingpaintings.org

First published DPPI Journal, Issue 61: Spring 2008