Tag Archives: Now is the time

Writer Shaun Pye on exploring issues that affect many parents of disabled children, for BBC’s There She Goes

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!

BBC4's 'There She Goes'

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.

Two hands high five eachother, and text reads: Now is the time to make life for disabled children and their families better. Scope = Equality for disabled people

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.

An illustration of a parent and child, with text that reads: One in four parents of disabled children aged 0-5 became more isolated as a result of their child's diagnosis. Scope = Equality for disabled people

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.

Raising awareness

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.

Be a Disability Gamechanger and sign our petition calling for a new Minister for Disabled Children and Families.

Dear Minister for Disabled Children and Families

Carly is an Autism advocate, consultant and professional speaker. She didn’t receive her Autism diagnosis until she was 32, after two of her daughters were diagnosed. She found it a battle to get the voices of Autistic women heard and in 2008 started to notice a lack of understanding and resources when it came to autism and girls.

In this letter Carly shares her thoughts on why she is supporting our Now is the Time campaign, and how a future Minister for Disabled Children and Families can help disabled children and their families get the best start in life.

Dear future Minister for Disabled Children and Families,

My name is Carly. I am an autism advocate, the mother of autistic daughters, and autistic myself.

Like many British disabled parents, we want our children to have a better tomorrow.

We have the passion and the drive. We won’t stop until all UK children have equity, including our disabled children. We don’t want anybody left behind.

Our task is lifelong. Our resilience is remarkable. Our need for support to help our children live a fulfilling life, is at times desperate.

Talent is everywhere, opportunity isn’t

As an advocate I have the privilege (and it is exactly that) to work for phenomenal British pioneers leading the way in disability equality. Most recently, participation with Right Honourable Lord Holmes on his vital independent review on disabled applicants and public appointments. Lord Holmes so wisely said that, “Talent is everywhere, opportunity isn’t.”

This lack of opportunity for our disabled children fails to recognise the gifts and talents disabled youth have, this lack of recognition could come at a great cost to our country in the long term.

Some of the brightest minds that can serve our country not only reside in well performing schools but also in Special Educational Needs and Disability (SEND) schools.

I have a friend, the acclaimed artist Rachel Gadsden, Rachel has a visual impairment yet in her talks she explains that “you do not need sight to have vision“.

The saying, “The quieter the mouth the louder the mind” means that as assistive technology becomes more sophisticated, the loudest thoughts, minds and perspectives will soon be heard louder than ever before.

Many are left isolated and forgotten

Please visit the family homes where home educated children live.  The children who were “not able enough” to flourish to their full potential in mainstream schools, yet not “disabled enough ” to warrant a SEND educational provision.

There you will find new thinkers, leaders and cyber security experts of tomorrow.  The most creative of artists, inventors and entrepreneurs, are waiting for you to notice them.  They are all missing out on the governments most diverse forward-thinking schemes like Cyber first, aimed to be advertised in schools.

This grey area of education leaves many of our most capable children isolated and forgotten.  They are left without opportunity or support outside their family.  This comes at a cost to our wallet, to our mental health, to our relationships, to our physical health and the NHS. And not to mention the cost to wider society of all that lost opportunity.

Carly writing on a poster at an event all about equality
Carly is an Autism advocate, consultant and professional speaker.

We aren’t asking for pity, we are asking to be heard

We must see disabled children’s abilities and not just their impairments.

We need a minister to work alongside parents, and the existing Minister for Disabled People and Minister for Children to ensure that no grey area is missed. We need you to be concentrating on disabled children alone so that no task is deemed too big, too small, too out of remit to be pursued as a policy priority.

Minister for Disabled Children and Families, we need you to ensure that when any new Disability Act, policy or project is discussed, you are there with a fine-tooth comb.  You need to ensure disabled children are a part of that policy .

At present some policies are too vague to be implemented. Some Acts have been written with adults in mind, and although this is of vital importance, it leaves disabled children behind.

Now is the time

What if parents of disabled children were better understood and work with a Minister as agents of change, respected by professionals and not viewed as “hysterical” or “hard work”? The truth is we aren’t either, we are often just exhausted.

How much talent could be discovered if we supported the most underestimated?

What if we celebrated disability history and the vital contributions disabled people have made to the UK?

What if we had someone like you making it happen? Now is the time to help disabled children and their families get the best start in life.

Yours faithfully

Carly Jones MBE

British Autism Advocate and Mum

Be a Disability Gamechanger and sign our petition calling for a new Minister for Disabled Children and Families.