Tag Archives: Now is the time

We knew we had to share our story

Dan and Aimee White, parents of Emily (13) who was born with spina bifida, share their journey as Storyteller for Now is the Time campaign and call for a Minister for Disabled Children and Families.

When you first receive the news that your child will be disabled, you expect to be given all the support needed and a system will be there to guide you, so you won’t feel so isolated and sucker punched. The reality is that this does not happen. There is a void where charities, benefits, support groups and aftercare are not easy to reach.

So, when Scope called last year and asked us to be the face of their new campaign, Now is the Time, and share our story we knew we had to do it. The campaign asked people to sign a petition to call for a Minister for Disabled Children and Families to be in post. Last week, Emily, proud in her wheelchair, went to Downing Street to hand the 40,000 signature strong petition in.

To speak to camera was cathartic

When the campaign launched last year, we played to our strengths, honesty and passion. The team from Scope visited us all at home to make a film. We sat talking about Emily’s first hours on earth and the lack of support. To speak to camera was cathartic because we wanted the country to know that, as a close community, we love our children dearly, they are perfect, and are contributing.

A teenage girl sat in a wheelchair, punching mats that are being held up by a lady. A man in the background smiling, recording the action on a phone.

My beautiful wife was invited to speak, by Scope, to an audience at the Natural History Museum, once again sharing our story, using our past to change the future. The message of necessity was spreading, with parents backing us on this campaign.

Our community was uniting

The online petition soon started to gather numbers, and we relentlessly and without social media mercy asked the people to sign and share. Old friends such as Matthew Wright of Talk Radio and more gave us the opportunity to take it to the masses. However, the real stars of the campaign were simply parents like us, beautiful people who have been there for us and vice versa. Our community was uniting, wanting, and demanding.

A Minister is needed to help support new parents and young disabled children everywhere. Someone would be there to link together all the hidden support. To make it easier to access information, to make services prominent and be a voice for families.

If this minister had been working in Government twelve years ago, the early days of our family life would have been different. We could have concentrated on parenting rather than thinking society had shut us out.

The message is being heard

We, as a family and with Scope have travelled and talked countrywide to all who would listen. Last week, Emily, proud in her wheelchair, went to Downing Street to hand the 40,000 signature strong petition in.

Sharing our story for this campaign has had an impact. Over the last few months the Government has added several new ministers to the cabinet, for new, socially minded causes. It seems the message of supporting people through difficult, avoidable times in their lives is apparently being heard within Westminster. Surely, logically, our representative would be next.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger

The power of storytelling for Scope

Storytelling is an integral part of Scope’s work. The power of sharing real life and lived experiences through our platforms influences policy and challenges societal attitudes.

In our recent campaign, Now is the Time, parents with disabled children shared their stories of the gaps in support they experienced, from birth to diagnosis.

For National Storytelling Week, four Scope storytellers share the impact of storytelling for them. We hope you enjoy their stories.

Christie “Sharing our story has had a huge impact on me personally.”

As a parent, hearing the words that your child has brain damage, is crushing. For a long time, I could see feel nothing but despair, guilt, anger and bitterness. I fell into a deep depression and couldn’t focus on what Elise needed from me.

Getting involved with Scope and sharing our story made the biggest difference, we met other families who were going through the same as us, they helped me understand that I wasn’t alone, and it wasn’t my fault.

A girl smiling at the camera, being cuddled by a lady. In a room with lots of toys.

Elise started to progress in ways that we never expected. Seeing the way other people with disabilities lived their life and the amazing things they were achieving, made me realise that as long as we adapted life a little and had the right support, there was no reason Elise couldn’t live her life to the best of her ability.

Sharing our story had an amazing impact on us because our friends, family and the followers Elise has on her Facebook page, have read more into what we have to face, like the fight for services, funding and support.

I shared the campaign and then I watched it get shared by so many people. I kept checking online and watching the signatures increase, it was amazing! We had some lovely messages from people telling me they didn’t realise how much we had to face.

Only positive things can come from sharing your story, it helps in ways that you would never think and definitely helps you realise that you aren’t alone in this!

Read more about Christie’s story.

The Ratcliffe family “Support others by telling your story.”

Being a Scope storyteller is a privilege as we are able to share our personal story, whilst understanding that we are also supporting the vital work of Scope.

During our last Twitter Takeover, the number of people who signed the petition call for a Minister for Disabled Children and Families rocketed. We were pleased that people didn’t only like our story, but it encouraged people to take direct action. The needs of disabled people in our country are significant, we all know that.  Telling our story, if it helps to raise awareness, is a good way for us to help.

A family photo of the Ratcliffe family - dads Garry and Kyle, with their four children, three of whom have impairments.

We have really enjoyed sharing our family’s story. It has given us the opportunity to put into words what, to us, has been just part of everyday life. When we get feedback, people often comment on the things people take for granted; family outings or going for a haircut. We have been told that our family’s determination to lead full and fun-packed lives, provides inspiration to others and, if it does, then that is fantastic! What better way to support others by telling your own story?

Read more about the Ratcliffe family’s story.

Menna “Change is needed.”

After re-reading my story, it made me realise the little professional support that parents like me receive after diagnosis of your baby. Also, the lack of support the children get, especially when growing up and wanting independence.

A smiling lady holding a baby.

I’m hoping that by sharing my story it might help the government realise that change is needed, not only for the beginning of a child’s life, but also when a child is growing up.

Read more about Menna’s story.

Sam “Sharing my story has helped me to not feel so alone.”

Storytelling is believed to be one of the most ancient of human activities, it’s easy to see the benefit is not just in the listening but in the telling too.

Sharing my story has helped me to not feel so alone. Becoming a parent of a severely disabled child and the paths you have to navigate because of that, can be very lonely and isolating at times. It’s easy to think you are the only one going through this or blame yourself for over thinking things or feeling down.

A lady and a child sat at a table. A man is next to the lady. All are smiling and looking at the camera.

Discovering that you are part of a much bigger group of people facing the same or similar challenges is empowering and comforting. Listening to other people’s stories helps to put everything into perspective and gain some sense of balance.

I’d like to think that sharing my story has helped the Now is the Time campaign by giving another personal perspective on what becoming a parent of a disabled child is like. There is still much to be learned and improved on in the diagnosis of children, the care and support families inevitably need, and the funding required to give people all the facilities and equipment disabled children may need to live a full life.

I hope my story will help those in positions of power to realise now is the time to support people better. I never want another new mother to be told their baby has “something wrong with them” then be left alone on a maternity ward. That should not have happened to me and I hope it will never again happen to another parent.
Sharing your own story, possibly helping someone else with your words even, is a gentle yet powerful part of a healing process.

Read more about Sam’s story.

We’d like to thank all of Scope’s storytellers, past and present, for sharing real lived experience to drive social change so that disabled people can enjoy equality and fairness.

During National Storytelling Week, we will be sharing lots of different Scope storytellers and telling you how you can get involved.

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.