My son, Harry.

I am the mother of three wonderful boys. I am also a first generation British Asian. My parents came from India in 1969 and are Punjabi Sikhs. My middle son, Harry (13), has Down’s Syndrome and, like everyone with Down’s, is learning disabled. 

But disabilities, especially learning disabilities, are taboo in my culture.

We don’t talk about disabilities and hardly acknowledge that people with learning disabilities exist. But the reality is that my son and many others like him, are living in our communities today, and we need to have a conversation about this and how we accept them.  British Indians have to change our attitudes towards learning disabled people.

Acceptance has to start from birth. When a son is born, the celebrations are huge and often extravagant. Indians, as everyone knows, love to party! The gifting of sweets to all your friends and family, blessings at the Gurudwara (the temple) and the endless traditional ceremonies. The whole community shares in the joy that this new life brings. But what happens when your baby isn’t quite ‘perfect’? Who wants to celebrate this ‘simpleton’, this ‘backward’, this ‘poor soul’? The fact is there is a real lack of compassion. There is a sense of loss and quiet mourning.

For my Harry, the celebrations were simple and low key. There were no sweets, no parties. No acceptance.

Then the blame game starts. I was told it had happened to me because I was unmarried, I was living with a white man and I didn’t conform to the customs and beliefs of my culture and faith. Of course, a medical explanation wasn’t enough for the gossip merchants to get their teeth into. They had already made up their mind that I had done something awful and that Harry’s learning disability was a punishment for that. 

The feelings of rejection and isolation soon overshadowed any feelings of joy I had for my beautiful boy.

Over the years, it’s become clear to me that many in my community see Harry as a burden. A financial and emotional disaster. I’m expected to keep him hidden out of sight. I couldn’t possibly be proud of him, could I? ‘You won’t be able to get on with your own life now. What about his poor brothers, what will happen to them?’ I’ve had to listen to all this, and it fills me with rage when people can’t see beyond his disability. Harry is my son, not an alien creature. He has a condition that we know so much about now and yet we choose not to educate ourselves but to listen to mistruths, old wives’ tales and rumours instead.

So why do so many people in my community regard him with such negativity? Why would someone tell me I shouldn’t visit a pregnant friend in case I passed on the curse to her child? What is it that brings about this sense of fear? 

There are some deeply embedded cultural ideals that my community simply cannot detach itself from. The notion that we must all strive for perfection, for academic success, for the beautiful dutiful wife and to continue with our customs and traditions, no matter how outdated they have become. The idea that we must do better than the previous generation. We are obsessed with status and what others in the community think about us. Our children must become doctors, lawyers, engineers and failing that, pharmacists! We have set the bar so high that when a child like Harry comes along, he is immediately rejected.

‘Izzat’, the concept of honour and prestige, is important to Indians. Having a learning-disabled child damages that. The shame and embarrassment are palpable. Prejudices and bias are completely exposed, and it becomes impossible to see this child as anything other than a disappointment and failure.

Yet my Harry is not a failure. He is an absolute delight. He has the most incredible talent for music and drama. He can recreate a Bollywood dance scene without missing a beat. He loves horse riding, has been skiing and has even ridden a Yak when we visited India. We have never hidden Harry away. We are loud and proud of him and can see beyond the academic achievements and celebrate all the other amazing things that he can do. He is loved and adored by his brothers even when he is being a stroppy teenager! 

Fortunately, Harry was accepted and loved by my parents from the minute they set eyes on him. My mum’s younger sister had a learning disability, so acceptance came easily for them, and I’m grateful for their support. But there were times when I needed more than just a lovely curry cooked up by mum. I needed someone to go to the hospital appointments with me, to attend the support groups, to help me make sense of the annual review meetings at school, to simply hold my hand when things got tough. Because they do get tough, not all the time, but there are battles that we have to fight to access the right support and services for our children. I just needed more support.

I sometimes wonder if the lack of visibility of people with learning disabilities, not only in our communities but in the books we read, the tv shows we watch, the Bollywood films we love, influences how Indians view them. I’m reminded of a Hindi film released in 1964, titled Dosti, (Friendship), which had a blind lead character and a physically disabled character, but again no learning-disabled people in sight. In one scene, the lead character sings a beautiful song which loosely translated goes:

You who walk away,

Turn back and look at me,

I am a human being,

Just like you.

Simple words but maybe we can learn from Dosti.

I hope we can start to bring about a change in attitudes. I am certain many of the views that are held by Indians are no different to those in other cultural groups. But they are definitely more amplified in mine. 

Our children can live fulfilling lives with the right level of support and that has to start from when they are born. Families like mine need to feel they belong in their communities and our children have the right to be welcomed into the world with all the pomp and ceremony that is afforded to others. 

For the last 13 years, I have felt very much like an outcast. Shunned and neglected by a community that was part of my identity. I hope that others don’t have to experience what I did. The world can often be a lonely place for families of learning-disabled people. Let’s embrace them and give them the love and care they deserve.