Why drama can change our lives

Clockwise from top left: Martin Sheen, Sharon Horgan, David Tennant and Jessica Hynes

You wait for one brilliant TV series about life with a disabled child and then two come along at once.

Was it smart or befuddled thinking that made the BBC schedule the final one-off episode of the brutally brilliant comedy There She Goes the day after the finale of Best Interests, a drama that left anyone who watched it soaked through with tears?

Whatever the reason I urge anyone with even the faintest interest in social affairs or parenting to watch both these shows because they tell our story, and our story must be heard.

Best Interests director Michael Keillor, said: “I don’t know why there aren’t more shows about life with a disabled child. It is such a dramatic life.”

He’s right of course. And yet before 2017 when parents Shaun Pye and Sarah Crawford took pen to paper to write There She Goes, based on their daughter, Joey, who has learning disabilities, there was nothing on TV that reflected my existence or that of my girl Elvi, 21, who has a rare genetic disorder.

An honorary mention here of that other BBC drama,The A Word, from 2016. Writer Peter Bowker conjured up a perfectly imperfect world around five-year-old, autistic little boy, Joe. Even Joe’s grandad, played by Christopher Eccleston, was a ringer for my own dad who loved my daughter beyond measure. But autism is a very specific condition and it wasn’t quite our life.

The occasional soap plot about disabled kids was well-meaning but inevitably interwoven with other stories and was rarely sustained or memorable.

Best Interests, which finished tonight, will linger long in the memory of anyone who watched it. With Sharon Horgan and Michael Sheen as parents Nicci and Andrew, it had all the emotional and political punch you’d expect from writer Jack Thorne, a long-time campaigner for disability rights.

The high drama of the court case at the heart of the plot - deciding whether to keep daughter Marnie alive or turn off her ventilator - gave Thorne license to explore a very recognisable disabled everyday.

Even though my daughter has a learning disability rather than muscular dystrophy, like Marnie, (brilliant Niamh Moriarty), here was a life I knew: the parental guilt at going away without your disabled child, the exhaustion of providing a lifetime of care for someone who can’t look after themselves, the extreme impact of having a disabled sibling on brothers and sisters (deftly played by Alison Oliver).  And the heart bursting amount of love you have for a child the world finds hard to accept and definitely does not cater for.

One line particularly hit home. On the steps of a court Nicci is asked by a journalist what advice she would give to other mums in her position.

“I wouldn’t need to say anything because they’d understand,” she says. “Because they, like me, spend their entire lives fighting … for money, for wheelchairs, for breathing equipment, for nighttime support, for educational support, because they like me have had to swallow their tongues while those in power try to cheat them out of what their life needs.”

There it was on BBC prime time, delivered perfectly by her out of Bad Sisters - the truth about the constant battle parents wage to get support. I feel it Is the greatest scandal of our lifetime that authorities actively block the rights of disabled children because more of youngsters are living longer lives and they are seen as expensive and unnecessary.

Look at the recent example of Kent county councillors who revoltingly argued that parents were demanding Education Health and Care Plans for their often desperately ill children, because “it’s the in thing”.

Tomorrow parents will descend on Parliament to protest that attitude.

The medical profession is more nuanced but we know that Do Not Resuscitate (DNR) orders were placed on disabled people during the pandemic with no discussion with them or their families.

In Best Interests, Marnie’s paediatric consultant argues in court: “We do not ration care in this country.”

A cross-examining lawyer jabs a question home: “Are you denying that during Covid there was a rationing of care for disabled people?”

The consultant replies: “There was a prioritisation.”

The lawyer asks: “Who did you prioritise?”

The question is left hanging in the air.

It sent me straight back to 2020 and the enormous fear that came with my own daughter not being prioritised for the vaccine even though I was as her carer and she was twice as likely to die from Covid than her age group peers. It was only when Jo Whiley campaigned on behalf of her sister, Frances, that politicians thought our kids might be worthy of protection.

On Wednesday, what could be the final episode of There She Goes will be aired. Man, I will miss this series.

I cried big salty tears of recognition within minutes of the opening credits of the first ever episode back in 2016. David Tennant played a character based on Shaun, Jessica Hynes essentially played Sarah. The series was made by Sharon Horgan’s company Merman.

Here were two parents who loved their daughter beyond measure but who struggled with the mental scars left by accepting your child will never be the child you dreamed of.

This was a show that talked about poo. My daughter is 21 and still wears pads, poo features strongly in our house.

As a script writer for Have I Got News For You, Shaun knew that the dark humour so many people in our world share would balance out the moments of deep despair.

Shaun and Sarah made the brave decision to put in the script what many of us only think in our darkest moments. “I can’t do this”, “I wish she hadn’t been born like this”, “I feel so angry”.

Sarah didn’t ask for a writing credit for the first series because she was worried about how There She Goes would be accepted. The BBC slightly buried it on BBC Four, uncertain what to do with such an “un-PC”comedy but then, realising it resonated with so families, moved it to BBC One.

Here, in all its messy, chaotic glory was our lives.

Shaun and Sarah made a conscious decision not to make There She Goes a campaigning series. They just wanted to tell their daughter Joey’s stories because they hadn’t seen anyone like her on TV.  They felt that Sarah’s background as a psychotherapist enabled them to navigate the baffling system other parents find impenetrable.

Sarah told me: “It was such a relief when the first series came out to see the social media reaction. Families said it was their lives and seeing themselves on TV was important. We just thought we were telling Rosie’s story.”

And yet, they have beautifully, hilariously, created a show that is so honest about the loneliness and isolation families feel, and the joy from the small wins and craziness of our existence that I have urged policy makers, politicians, paediatricians and parents of non-disabled children to watch it.

Shaun said “The neighbour character is really important to me because he represents the rest of the world. They want to help but they don’t know how and we don’t really how to ask for help because how do you describe our liives?”

From great drama comes real change. Cathy Come Home changed public perception of homelessness. We need to change attitudes towards disabled people and those with learning disabilities.

When George Osborne told the Covid Inquiry today that austerity measures brought in when he was Chancellor did not impact health and social care, I spat my tea. A Disabled Children’s Partnership of 4,000 families, the year before the pandemic found that only four per cent felt they had sufficient support to safely care for their child.

I am often told: “I don’t know you how do it.”

Watch these two shows and you will learn the answer and you will know that we need help.

ENDS