Shaun Pye is the writer of BBC4’s ‘There She Goes’, and is the dad of a 12-year-old girl with a chromosomal disorder.
In this blog, Shaun writes about exploring issues that affect many parents of disabled children, like him – and why now is the time to join our campaign to make life better for disabled children and their families.
Writing a personal story
In the weeks leading up to the broadcast of There She Goes I was extremely nervous. All TV writers worry about the response from friends, critics and the dreaded internet. But I was particularly worried about what the families of children with learning disabilities would think. I had always emphasised that this was a very personal story, about my family’s experiences with my daughter, and didn’t try to tell any wider story about living with disability. But still – I was terrified of how it would go down, all the same!
I didn’t need to worry. We had a screening for a wide range of charities, including Scope, which drew a very positive response. Then in the days after episode 1 went out – wow. The number of people who contacted me, or the production company, or the BBC, or took to social media. Overwhelmingly, support was phenomenal (so huge we haven’t had time yet to thank each person individually).
Almost universally it was from parents or siblings of children, although many now adults, with some form of disability. The message repeated over and over was “finally, a programme on television that tries to show what my life has been like”. Many said that other programmes had dealt with the subject matter but often portrayed the parents as saints dealing with a terrible burden, or portrayed learning disability and autism as some sort of superpower to be marvelled at. It’s neither – it’s something that’s amazing, boring, terrifying, funny, sad, uplifting … did I say boring already?
Some people commented on specifics, the rituals around dealing with finding hidden poo, the bruises up the arm, the ordeal of getting their child or sibling to go for a walk. But many also talked about the broader issues in the programme, a lot of which chime with Scope’s current campaign.
Now is the Time
A key statistic is that 41 per cent of parents of disabled children say they were offered no emotional support during or after their child’s diagnosis. I’d say our parents and extended families tried to offer support. However, the theme of episode 1 is that a broad range of lovely people just wanted us to think that everything was okay. And it really wasn’t. This meant we had a lack of the support that we really needed.
Another key statistic is that 25 per cent of parents of disabled children feel more isolated at this time. Without question this happened to us. My wife didn’t want people telling her “nothing is wrong” because she knew there was, and if nothing was wrong with her daughter then by extension something must have been wrong with her.
When it became apparent to everyone something was wrong, the last thing my wife wanted to do was see cute, bouncing, “normal” children at Tumbletots and NCT get togethers. She didn’t want the judgement of others, well meaning or not. She withdrew from social interaction. I just drank too much. It’s a source of great shame obviously but it is the truth.
One source of regret I have is that I didn’t try and seek out support earlier, from the likes of Scope and the other charities specialising in this field. I think it was from a sense of pride and a feeling that I would be judged? These weren’t rational and I wish I could tell my younger self just to go and get all the help I could.
If in some small way ‘There She Goes’ can help raise awareness of these issues, promote a bit more understanding of learning disability and help improve the support networks people have access to, and encourage them to access them then, I’m very pleased.
As I said, this programme only ever tried to tell my story. It was a decision taken wholly because that would give the programme authenticity. But beyond that I didn’t think I had the right to try and import other families’ experiences. And anyway, I thought that my daughter was unique.
She is unique. She’s amazing. But a lot of our experiences it turns out are the same. My family have been truly blown away by the response of parents. It’s good to know you’re not alone.
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