All posts by julieannereynolds

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.

“I wanted to know that the future was going to be okay.”

Menna, mother of Cerys who was born with Down’s Syndrome, talks about the lack of support, emotional and financial from birth onwards.  

I’m Menna, I am a single parent. When I found out I was pregnant, the relationship was over. I had no support and direct family support is minimal as my family live far away.

I didn’t know that Cerys was born with Down’s Syndrome until she was ten days old. The hospital just gave me a leaflet. No-one really discussed it with me. I was in a room by myself. The midwives were fine, but they didn’t know enough about Down’s Syndrome themselves to be able to discuss it with me. There was no one able to sit down with me.

We got referred to specialists to check her hearing and heart and everything else. I felt alone, there was nothing. I was just handed this baby and left alone. Obviously, being a new parent is scary in itself, without finding out that you have a disabled child. I was just left to get on with it.

The consultant we saw said that Cerys will possibly always have the mental age of 13. That was all she said really. There was no advice about her having Down’s Syndrome. There was nothing they could really tell me.

I couldn’t see a future for her

There is no disability in our family. I didn’t know anybody with a disability. I just remember thinking, I couldn’t see a future for her.

A young girl on a bed with her head resting in her hands and smiling at the camera
A young happy Cerys

They actually gave me a DVD to watch, which was no help whatsoever. It didn’t reassure me at all. In fact, it made me feel worse. The DVD was all about young children and toddlers, nothing about the future. I wanted to see older children and adults rather than babies. I had my baby and I wanted to know that the future was going to be okay. I needed a bit of reassurance really, which I didn’t get.

I just kept plodding on

There were no local support groups. I don’t drive. It made things hard. There are no support groups at all in my area.

I just kept plodding on. I did have a close friend who had a little boy, without a disability, who were quite close. Obviously, her experiences were different to mine.

You feel a bit vulnerable. Cerys was slower with everything. Things like eating solids, I couldn’t just give her solids because she would have choked. It was quite difficult. She was probably 18 months old before she started experimenting with food. I worked that out myself.

It’s been a case of trial and error. Obviously, I had friends who had children so I learnt from them, rather than specialist advice.

There is nothing when they are babies

When Cerys was a toddler, I started to have specialist support coming out to meet her for things like physiotherapy. Probably from about nine months old. In the early years, there is nobody.

Once you get the Disability Living Allowance [this is now Personal Independence Payment] you get other support like carer support. Financially there is nothing. If you have a disabled baby, there is nothing when they are babies.

A mum holding her baby and smiling and looking at the camera
Menna holding a new born Cerys

I applied for Disability Living Allowance for her when she was a baby but got refused. They said she was no different to any other baby. Although the hospital appointments begged to differ. There was no financial support until she was three.

I was advised not to go on the internet and not google because of the wrong advice I would be given. If I needed any advice, I would go through the Down’s Syndrome Association. If I had a specific problem, they were good.

Any support you can get, grab it

In the early years you should look for help if it’s out there. That’s what I lacked. Not getting the help and support from anybody. And if there are support groups, try them.

Any support you can get, grab it with both hands. I have noticed that as my daughter has gotten older, that the support has gotten better, but I still think that they do fail parents.

Cerys is beautiful inside and out

As a teenager, Cerys is no problem whatsoever. She has her moments, like any other teenager, but she is better than any other teenager.

She is amazing. She is funny. She is beautiful inside and out. She’s caring. She’s just the most beautiful teenager you could ever meet. You get the stroppy teenager, there is none of that. She is a lovely child. She always has been.

Cerys loves dancing. She loves posing. She had a couple of photoshoots. She is beautiful. I know you are biased as a parent, but so many people have said what a beautiful girl she is. She would love to go into something like that. I am looking into her going into modelling at the moment, but I don’t want to put her on the road to being rejected. Apart from that, she would love to be a model. She is amazing.

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

George’s Marvellous Bike Ride is a community event

Lesley, a family friend of George who had quadriplegic cerebral palsy, cycles in his memory every year.  Last year George’s Marvellous Bike Ride partnered with Scope to fundraise to help other families and raise awareness.

In this blog, Lesley talks about George who inspired this tremendous event and how much it means to get everyone’s support.

A boy and lady looking at the camera and smiling
George and his mum, Anna

George inspired those around him to enjoy life

Since 2012, Georges Marvellous Bike Ride has gone from strength to strength. All in memory of one incredible boy. George Hutchings had quadriplegic cerebral palsy and needed 24-hour care. He was unable to move around independently or speak. George was always happy and inspired those around him to enjoy life. We want to continue to help others like him to enhance their lives and relieve the pressure on their families.

This year, we chose Scope to partner with. We felt like Scope had the right ethos because it supports people like George. It was an easy choice. I saw the challenges and hardship George and his family faced.

It is a community event

We all decided to do a ride as Anna (George’s mum) used to do a lot of cycling with George. It has been a very big part of their lives.  It isn’t just a ride. It is a community event. We want to incorporate as many people and make it as accessible as possible.

George’s Marvellous Bike Ride consists of a mix of rides and routes aimed at families.  A lot of children take part.  One boy raised £700 and he had a broken arm. There are options for all riders of all abilities cycling distances from 11 miles to over 60 miles.

An event banner with cycles at the top and George's Marvellous Bike Ride text in the middle and georgesmarvellousbikeride.org.uk
George’s Marvellous Bike Ride banner

We’ve had the most riders since we started in 2012

Our small team consists of me, my husband (Rob), Anna, George’s uncle Nick and a few more friends. We want to keep the ride small and informal as we don’t want it to be a huge ride that will lose all its meaning.

It’s a very emotional day, as it’s about George. It’s an amazing way to remember George and celebrate his memory. It’s so nice to see everyone happy, especially this year as it was a bright sunny day.

Georges Marvellous bike ride people cycling
Cyclists getting ready to set off.

It really came home this year how much of a community event it is.  It was lovely to see everyone in their bright yellow t-shirts. We had 92 altogether, which is the most riders we’ve ever had since it started in 2012.

We’ve had one little supporter from the start called Amy, who gets everyone sorted on the day. She was 7 at the first ride and is 13 now and has helped us every year since.

We will continue to raise money for George.

We will carry on organising the bike ride and spread Georges story. When it’s frantic the morning of the event I always say I’m never going to do this again, but then when it’s over I’m always the first to ask what date we are doing it next year.

Scope is incredibly grateful to everyone involved in Georges Marvellous Bike Ride and to George himself for inspiring so many people to make a difference.

If you would like to raise money and organise your own bike ride or fundraising event for Scope to provide services for families like George’s find out how you can get involved on our website.

When Leo was born deaf, it was the start of big changes in our lives

Leo was born deaf. In this blog his mother, Keighley, shares how the right support is so important to parents of disabled children to ensure their children get the best start in life.

From the moment Leo’s test came back with no response, support started that day.

It took two to four weeks before Leo was officially diagnosed as being deaf.

Considering I am profoundly deaf, you would think I would have had at least thought about the possibility of my children being born deaf. I had grown up believing my deafness was caused by childhood illness.

Leo was born deaf. From the moment the lady told us that Leo’s new born screening hearing test had come back with no response, support started that day. We were given phone numbers for support lines, direct numbers to them and leaflets explaining the next steps. Along with the reassurance that a Teacher of the Deaf (TOD) would be in touch soon to arrange a home visit. I remember thinking how stupid! He is only four weeks old, why does he need a TOD? How wrong was I?

Three ladies have supported us and helped make Leo the person he is

As well as the TOD support we have a family support worker who’s been with us since Leo was six months old.  The third person is Leo’s speech and language lady therapist who again has been involved since Leo was six months old.

Our TOD is the person we turn to when we have question’s no matter how silly they may seem. She has been there to give recommendations on simple things.  Like toys to help support Leo’s listening skills.  To celebrate all Leo’s achievements which might seem silly to other people, but she knows how important they are to us.

Our family support worker has become part of the family.  In the early days she was at our house weekly.  Supporting Leo with his listening and waiting skills he needed to complete a hearing test.  Without these skills Leo would have had to undergo testing while sedated which carries its own risk. Leo will quite happily sit and undertake testing using all the skills he has learnt.

When Leo was about two years old, his speech and language therapist observed him from a distance, getting ready to step in when she felt was needed.  Working with Leo to get him ready for when he needed his implants.

These three ladies have supported us and helped make Leo the person he is. Without them Leo wouldn’t be the confident chatty little boy he is today.  Of course, there are many more people involved in his care.

Attending that first group was a turning point for me and has changed our life.

This journey has changed me, its broken me at times emotionally and physically.  Without the support of the people mentioned I don’t think I would be where I am today which would have affected Leo and his progress.

As well as teaching Leo important skills, my concerns and worries plus my hopes and dreams for my children are listened to.

When I was nervous to attend a playgroup for deaf children for the first time, I was offered support by someone coming along with me without me having to ask. I know if I didn’t have her there that day I would have not gone.

That first group was a turning point for me and has changed our life. We have met new friends, started learning British Sign Language, and got involved in other support groups.

I have now come to terms with my new identity.  I am Keighley. I’m deaf and proud. My son will grow up never questioning his identity.

If we didn’t have the support, Leo would have started falling behind without a doubt

Writing this, I have been trying to think how we would have coped if we didn’t have the support. I truly believe we wouldn’t be informed and confident to attend meetings and say what needs to be said rather than allow people who don’t know Leo tell us what is best for him.

Support workers have listened and answered the same questions 101 times about Leo’s schooling. Stuff that we have understood at appointments is explained in simpler terms. Different people involved in Leo’s care have been brought together to make sure everyone was on the same page.

I have been given the confidence to remove Leo from the nursery he was attending after I was having doubts about Leo’s needs not being meet.  I’ve had support in attending nursery meetings and help finding a new nursery.

These examples don’t even scratch the surface of the times support has been there to help.  Leo wouldn’t be getting any of the support he gets from both of his nurseries and he would have started falling behind without a doubt.

Leo surprisingly hasn’t fallen behind in any other areas of developments

Today Leo is coming up to a year of having implants.  He wears his processors all day long and can tell us when they are not working.  His speech is developing so fast thanks to his Speech and Language Therapy and all the support he had leading up to and after his implants.

Two smiling young boys and a man playing the snow

He attends two different nurseries, one local to us. He has the best support from his Key Worker, the TOD and Family Support Worker.  They all work together to allow Leo to assess sound. He will start attending school in September which has a hearing-impaired unit. His Education Health Care Plan is being prepared and, thanks to everyone’s hard work, we have plenty of evidence for the support Leo will need in school.

Leo surprisingly hasn’t fallen behind in any other areas of developments which sadly does happen when there is no support.  To think what would happen if we were without our support workers fills me with fear.

I was shocked and horrified when I found out that we are in a minority.  Most families don’t get this support because of cuts to funding!  I can truly say the support we have received has been fantastic.

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

Everyone focused on the negatives, the things that were ‘wrong’

Sam is mother of nine-year Lucy who has a complex genetic condition. 

In this blog Sam talks about her journey in pregnancy to the birth of Lucy, highlighting the gap in parental support.

Sam during pregnancy
Sam during her pregnancy

I’m married to Craig and we have our daughter, Lucy.  Lucy’s our only child.  She’s now nine years old.  Lucy was born with a very rare, almost unique condition called an unbalanced translocation. One of her chromosomes is missing a little bit off the end and in its place is an extra bit of another chromosome.

Clearly somebody thought there was a problem

I had been trying to conceive after getting married for about three years with no success and went through all of the different tests that you do.

The first round of IVF was unsuccessful.  Then we paid for our second round of IVF. We succeeded. We thought, ‘Great.  That’s fantastic’.  Then at the twenty weeks scan, everything changed.  She was too small, there was not enough fluid in the womb.  I had the scans twice a week for the remainder of my pregnancy.  I also had something called Dopplers every fortnight. Basically, measuring the levels of oxygen and other things, going in to make sure that there’s no placenta lymph insufficiency. We also saw an obstetrician every week, from about 22 weeks. Clearly somebody thought there was a problem.

I had a high-risk pregnancy. When I got to 37 weeks they pushed us into having a C-Section a bit earlier than, perhaps, we should’ve done.  She was born at 5 pounds 1 ounce. I bled a lot. I was quite poorly.

I hadn’t held my baby much or seen her enough

When she came out her left leg was above her head. It was a right odd shape because of her hip dysplasia, which they still didn’t know about because they just said she was breech.  I wanted, skin-to-skin contact but I only spent about five minutes with her. They took her off to a whole different department in the hospital.  She wasn’t even, in the room next door.

A paediatrician stuck her head through the ward curtain and said, ‘I think your baby has got a genetic problem,’ and tried to go away again.  I said, ‘What do you mean, like Down’s?’ that was the only genetic condition I knew.  She said, ‘Yes, I think your baby has got Down’s Syndrome,’ and then left me.  I was on my own for about two hours after that.

In high dependency unity
Lucy in the high dependency unit.

I hadn’t held my baby much or seen her enough.  I couldn’t feel my legs because of the spinal block, but I persuaded the nurses to let me go with my mum and my husband to see my baby.  They had to wheel me to the other bit of the department.  I was so physically poorly I was sick when I got back but I was determined to see her, she was tiny but perfect.  She was in the high dependency unit (HDU).

I would’ve broken sooner had I not been able to see her

I was in hospital for five days.  To be honest I think I would’ve gone stir crazy if I’d stayed any longer in that room.  For my own sanity I came home, but having to leave her, I howled like an animal.  Coming back without your baby having gone in to have one, it’s absolutely horrendous. The worst experience of my life.  My heart and soul were 25 miles away in this hospital where Lucy was in her little cot.  Every day we’d go in to see and cuddle her.

You’re not supposed to travel, really, having had a C-Section, you’re not supposed to be in a car travelling, so I got this special scar cover for protection.  All the things I did physically were wrong in terms of healing after major surgery, but emotionally I would’ve broken sooner had I not been able to go and see her.

I just lost it

The initial diagnosis side of things came on day two.  There was a whole load of stuff going on and it wasn’t handled very well. There was no counsellor there at all. I do think that was a bit odd.

When she was born there was a paediatrician there.  He said she had ‘Dysmorphic features’ which I took to mean he thought she was funny looking.  To be told that when you’re literally high on drugs because you’ve just got the morphine flowing through you, I just lost it.  He should’ve known better, than to say that.

Sam holding baby
Sam holding Lucy

You can’t even see your child. They’re in a completely different room in a different ward.  Somebody you haven’t even met has said these things about your kid and you think maybe they’ve got it wrong. I went into, sort of, pretty much denial.

The system seems to write off your child

I know she understands what we’re saying and we understand what she wants.  I can’t describe it, really, apart from that.  Everybody who knows her loves her.  She’s a very warm personality and funny, a wicked sense of humour.  These are qualities I don’t think I saw at first because everyone focused on the negatives. Certainly nobody told me about these and we had to just find out ourselves.

That’s the point.  The real shame that at the beginning, the system seems to write off your child, particularly with learning disabilities. It’s all focused on what they’re going to be able to achieve. You know, job, marriage, that we have put categories on those as valuing, as important. It’s society that makes it difficult.

Lucy and her mum and dad on a day out
Lucy and her mum and dad on a day out

She’s just won a Triumph Over Adversity award. She got picked out of thirty in her age group in the category.  She’s just incredible.  She has this depth of soul, just having suffered so much. She has a bravery that is truly empowering to be around and a forgiveness, as well.

I really wish somebody had told me that beforehand.  ‘You are going to enjoy this kid.  Yes, it’s going to be hard work, physical hard work,’. I wish there’d been more out there saying, ‘This is an opportunity.  You, your husband, your family, your friends and everybody that comes in to contact with her will grow into better human beings because of this experience.’  I know that sounds really rather profound, but it’s genuinely true.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Become a #DisabilityGamechanger and  donate today and help us provide services for families and provide the vital support they need.

 

Our toolbox of tips that every parent of a disabled child needs daily!

The Ratcliffe Family consists of two dads, Garry and Kyle, and four kids – Haydn, Isobella, Curly and Phoebe – three of whom have a disability. Haydn has cerebral palsy and is blind in one eye, Bella has Downs Syndrome and Curtis has a number of impairments and conditions including cerebral palsy, epilepsy, global developmental delay and he is blind too.

Here Kyle and Gary, write a letter to you to help you in the journey to get a better start in life for your disabled child.

Dear Parent,

We are writing to you as two dads of four awesome kids.  Three of whom have a disability. We wanted to let you know about some of the things we have picked up over the years.  Our toolbox of tips, tricks and attitudes that every parent of a disabled child needs on a daily basis!

Tip one

Our children get to do everything that every little person should do!

Never let anyone tell you that your child “can’t” do something because of their disability.

It’s currently Half Term, and our kids are already exhausted!  It’s only Wednesday and we’ve already been punting on the river in Canterbury, pumpkin picking in Medway, Chinese buffet eating, Leeds Castle exploring and sightseeing in London.

Two adults behind four children in a London Eye Pod. Two children are in wheelchairs and three are wearing hats.
The Ratcliffe Family on the London Eye

Curtis loves the smell of the flowers, Bella loves the variety of food at the Chinese, Haydn enjoys being surrounded by different people to talk to, and Phoebe (our non-disabled daughter) gets the chance to explore and climb.

Each of our children gets something different out of every experience. Our children get to do everything that every little person should do!

Tip two

Warrior parent needs to come out every so often

Be prepared to face a side of you that you might never have seen.  Warrior parent needs to come out every so often.  When your child isn’t getting a good deal, don’t be afraid to challenge people.  Whether in a shop, during a visit to an attraction or a medical service you encounter on a regular basis.

There should never be an apology or excuse made for our children.  We always make sure they are treated equally. Good luck to any shop assistant that thinks it’s okay to show us to the disabled changing facilities in a shop, that is clearly being used as a second stock cupboard. Not acceptable.

Tip three

Start to build up a series of questions ready to challenge systems

What to do when you are at your wits end with frustration.  It will happen, regularly. Usually with people that really should know better.

Start to build up a set of questions. Use flashcards if you need to in the early days. Some questions we have found useful are:

  • “What policy does this ridiculous decision come from?”
  • “What is your complaints procedure?”
  •  “Who is your line manager?”
  • “Explain to me how this decision is in the best interests of my child?”
  • “Do you know the contact details for our local MP?”

These are all useful when challenging systems – systems that were often designed for the majority of the population  – but never designed for the people that need them the most!

Tip four

Appreciate the small things. Celebrate the smallest steps

As we are sitting here, writing this letter to you, we would like to say to you, appreciate the small things.  Celebrate the smallest of steps.  Live in the present and be thankful for every little success.

14
Curtis smiling

Yesterday, we took about 50 photos of our son, Curtis, who was having a particularly good day. Not because he had just won a football match, not because he swam a length of the swimming pool. Not even because he managed to tie his shoelaces for the first time. But because he smiled. Yes, that’s right. Curtis smiled yesterday. The most infectious, smiley smile that you could ever imagine. A smile that curled up one side of his face. A smile that said “I’m really happy today, dad”. A smile that made us smile too. It’s not the big things that matter when you have a disabled child. It is the smallest step, the greatest achievements that mean the very best.

Last tip

Worry about the things you can control

Having a disabled child will mean that there are dark days as well as light ones.  But hey, that’s parenthood!  If you have a non-disabled child, you might worry about their friendship groups as they get older. We have worries too, as parents of disabled children. All we would say is, don’t let things worry you that you can’t control.  Worry about the things you can control which is why, right now, we are off outside.  To swing on a swing, slide on a slide, to push some warm hot chocolate through a feeding tube, and hope and pray for one more sunny day.

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The Ratcliffe family enjoying the seaside

Your sincerely

Garry and Kyle Ratcliffe

Now is the Time to be a Disability Gamechanger,  sign our petition calling for a new Minister for Disabled Children and Families.

Appoint the first ever Minister for Disabled Children and Families. This appointment would lead to improved accountability for how laws and policies affecting disabled children and their families are made. A dedicated Minister can strengthen how Government and services like the NHS work together to make sure families receive the right support.

Things like this stop me from living my life the way I want to

Bal is a post graduate student at Staffordshire University, disability activist, former President of their Student Union and has Generalised Dystomia.

In this blog Bal shares her campaign story to ensure taxi fares charge the same for all and how she helped change the law.

In 2015 I led a campaign to highlight the disgracefully high taxi fares that disabled people often face. It was stunningly successful; the law was changed, and bad practice prosecuted. But since then it appears taxi firms in my home town have blacklisted me.

Since moving out of home and becoming a student, taxi drivers have been a thorn in my side. I soon discovered that I was being charged significantly more for taxi journeys around the city than my non-wheelchair user friends, this moved me to act. I took part in undercover filming with BBC’s Inside Out which highlighted this existing national problem in a regional city setting. As a result of this, the law was changed. I then used this amended law by reporting the driver of a wheelchair accessible taxi to the local council’s Licensing department for refusing to take me to the train station. This driver was then successfully prosecuted and fined by the Magistrates Court.

A victory for wheelchair users

However, for me personally, because I was the public face of the case for the prosecution, not so much. I feel like I have been blacklisted in Stoke.  I find it impossible to book a taxi using my own name, (a task that seems to be easy for my non-disabled friends), with the taxi operators always saying that there are no available wheelchair accessible taxis when I give them my name.

Am I being paranoid? Well, when I wanted to go to the cinema with a mate, I rang to book a taxi; after being told by seven different companies that there were no wheelchair accessible taxis available I asked my friend to use her phone to try and book a taxi under a different name. She rang the first company that I had tried and they sent a vehicle straight away.

This is not a one-off event. Another example since the court case included not being able to attend a friend’s birthday meal. All the taxi companies that I called said that they had no accessible taxis available and, as I was alone, I couldn’t get anyone else to book the taxi for me. This left me with fear of missing out . On a recent night out, I was turned down by 15 taxis, despite using a small manual wheelchair that would fit in any car boot. Eventually after an hour in the cold and rain, a taxi agreed to take us.

Things like this stop me from living my life the way I want to

In a wider context taxi drivers overcharging or refusing to take people like me, prevents wheelchair users from living life with the same level of freedom as non-disabled people. Recently I was quoted £35 by one taxi driver and £10 by another on the same taxi rank, the disparity is shocking and has obvious financial implications. I have previously been quoted £55 for a 1-mile journey after a night out when the going rate for that trip is only £10 for everybody else.

Before I was involved with the court case I used taxis a lot more than I do now because they were reliable and on time and, the flexibility and convenience that they gave me was far preferable to using the bus service. However, since the court case I have had to change the way that I plan my journeys and my social life. I try not to let it stop me doing what I want to do, but in some instances, I simply have to change my plans and stay home because I have no way of getting where I want to be, especially at night. This really infuriates me as I feel I am being targeted.  I know that some people may say that I have brought this on myself, I don’t feel that I should have had to accept being discriminated against for being a wheelchair user.

Of course, I’m not alone in experiencing discrimination when travelling. Disability equality charity Scope have recently found that 40% of disabled people often experience issues or difficulties when travelling by rail in the UK and 25% of disabled people say negative attitudes from other passengers prevent them from using public transport. Although campaigning for equality has had some negative repercussions I will always continue to fight for fair and equal treatment with taxis and in all other aspects of life too.

This is a shout out to all taxi companies in Stoke on Trent, please let me know if you have got any wheelchair taxis that will be willing to take me and my friends and not overcharge us. After all I just want to be treated like everybody else.

We know there is still work to do until all disabled people enjoy equality and fairness, with transport playing a huge part in this.  We all need to work together to change society for the better.

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.

Ensuring the next stage of Universal Credit rollout works for disabled people

Universal Credit is a benefit that provides financial support for people on a low income or who are out of work. It replaces a number of so-called “legacy” benefits. 

The Government is about to embark on the next stage of rolling out Universal Credit. It’s vital that there is a smooth transition for disabled people – however, we’re concerned about how this process will work.

We outline the changes we want to see to ensure disabled people do not face financial hardship during the next phase of Universal Credit roll-out.

What is Universal Credit and what is changing?

Universal Credit is a single benefit that replaces six means-tested benefits: Income Support, Income-related Jobseekers Allowance, Income-related Employment and Support Allowance, Housing Benefit, Child Tax Credit and Working Tax Credit.

There are a number of changes to the design and delivery of Universal Credit compared to “legacy” benefits. The benefit is being rolled out gradually, and there are currently 1.2 million claimants of Universal Credit.

Under a process called “managed migration”, all remaining claimants on “legacy” benefits will be moved on to Universal Credit. The regulations determining this process will have to be approved by Parliament before they are implemented.

What needs to change to ensure “managed migration” works for disabled people?

The Government has made a welcome commitment to get one million more disabled people into work by 2027. Universal Credit has a role to play in making this happen by ensuring that people are supported as they move into employment or increase their working hours.

However, there are a number of risks with the current regulations which could leave disabled people without adequate financial support as they move on to Universal Credit. Below are three key changes we want to see to the regulations for “managed migration”.

Ensure disabled people do not face gaps in financial support

Under the proposed regulations, all claimants moving over to Universal Credit will be required to make a new claim for the benefit within a period of one to three months. After this point, payment of “legacy” benefits will come to an end.

We are worried about this change, as we know many disabled people face difficulties with making a claim for Universal Credit. In a survey carried about by the Department for Work and Pensions (DWP), 53 per cent of those with a long-term health condition agreed that they needed more support setting up their claim, compared to 43 per cent of claimants overall.

Whilst the application deadline can be extended, there is a substantial risk that many disabled people could be left without any financial support, if they are unable to make a claim within the allocated time frame. This is particularly worrying as we know disabled people are more likely to experience debt and have fewer savings on average.

We want the Government to ensure payments of legacy benefits continue until a Universal Credit claim has been made successfully, so that disabled people do not face financial hardship as they move on to the benefit.

Improve the use of Universal Support

There is support available to individuals who need extra help in making a claim for Universal Credit. This is called Universal Support.

Whilst this is positive, we are concerned about whether the Government will be able to successfully identify claimants who would benefit from this offer of support, including many disabled people. For instance, disabled people in the Support Group of Employment and Support Allowance generally have limited communication with the DWP, meaning it is less likely that any communication and support needs are recorded.

We want to see the DWP proactively offer this service to all individuals at the start of the “managed migration” process. If somebody does not respond to DWP communications, then this should automatically trigger a referral to Universal Support.

Increase access to transitional protection

Transitional protection is extra money paid to top up someone’s award so they are no worse off when they move on to Universal Credit through “managed migration”.

In order to qualify for this support, an individual must ensure their claim is correct on their first attempt. If their claim is disallowed, then transitional protection will not be applied to any subsequent award.

However, research by the DWP shows that people with a long-term health condition were less likely to have completed their claim in one attempt – 46 per cent of respondents compared to 54 per cent of those without a long-term condition.

This means it is very likely that many disabled people will face barriers meeting the qualifying criteria for transitional protection due to challenges with the application process.

We want the Government to ensure that transitional protection is available for all claimants moving on to Universal Credit, irrespective of whether their initial claim is denied.

What will Scope be doing next?

We’ve been raising our concerns with the Secretary of State for Work and Pensions, as well as Ministers within the DWP. We’ve also been speaking to a number of MPs and Peers.

We will be continuing to campaign to ensure that there is a smooth process for disabled people as they move on to Universal Credit.

What are your experiences of applying for Universal Credit? Share your story by emailing stories@scope.org.uk.

‘We all want to live the lives we choose’

Jameisha talks about the impact of a hidden impairment and how attitudes affect her daily life.

As a young person living with Lupus and a few other hidden impairments, I have had my fair share of challenges confronting attitudes surrounding my conditions. These experiences often come from well-meaning people, but they are a marker of how we need to change as a society to be more understanding and inclusive.

I have become very self-conscious about how people see me as a young person with an invisible impairment. So many thoughts go through my mind. What’s everyone thinking when I sit in the priority seating area? Are people judging me for getting the lift instead of the stairs? Are people staring at me for using the disabled parking space at the supermarket. It got to the point where I wouldn’t take help in fear that I would be judged. Ultimately, the consequences impacted my health.

These thoughts have come from real life experiences

I’ve had comments from people on more than one occasion telling me to get the stairs instead of the lift because I am “so young and healthy.” I once plucked up the courage to ask for a seat in the priority seating area on the train because I couldn’t stand any longer on my bad hip. My request was met with blank stares and lowered heads. It still feels humiliating thinking about that as I write this.

To the left Jameisha's is looking direct at the camera. Half of her face is shown. She is wearing glasses, a headscarf and headphones. To the right, there is half a tube window with the big round sticker on the window which says Priority seating, please consider passengers when using this seat #travelkind

There are also many barriers when it comes to the workplace. Many employers out there do not understand hidden impairments. It’s so frustrating. Part of me trying to live the life I choose involves the ability to work, but I shouldn’t have to sacrifice my health in order to financially support myself. I’ve had numerous jobs where I’ve been transparent about my conditions, but employers still were not able to offer me the support I needed. In fact at one job, my contract was terminated due to a Lupus flare up.

No-one offers me help because they can’t see anything is wrong

I try not to think that people are inherently bad. I think having a visual aid plays a role in that. When dealing with Lupus on a day to day basis, no one offers me any help because they can’t see that anything is wrong. After my hip surgery when I was on crutches, random strangers were bending over backwards to help me. It was a very interesting experience to say the least. At the same time I should add that even with a visual aid like a walking stick, wheelchair or crutches, I have spoken to many people who still face obstacles when it comes to societal attitudes. We still have work to do.

Jameisha's hand outspread and face up, with the Please offer me a seat badge and card. The text on the card says Please offer me a seat, Remember not all disabilities and conditions are visible.

One thing I had to do, to live the life I choose is to change my own attitude

I decided to put my health first. If I need to get the lift, I have to overcome those thoughts that stop me from doing so. I continue to be transparent when applying for jobs and focus my attention one roles that will not cause further harm to my body. I still have trouble asking for a seat on the train, but I’m working on that. The Please Offer Me A Seat badges and signs I have seen on public transport have shown me that there are steps being made to change attitudes in how we treat people with hidden impairments.

We all want to live the lives we choose

That goes for non-disabled and disabled people. Unfortunately, not everyone is able to, and societal attitudes play a part in that. For me, as someone with an invisible impairment, something that will help is shifting the way we think. I definitely feel we are making positive changes, but I think we need to change faster. I hope that with more disabled people speaking out and being visible (whether their conditions are visible or not) we can get to a place where everyone lives the life they choose.

We know there is still work to do until all disabled people enjoy equality and fairness, with digital and assistive technology playing a huge part in this. We all need to work together to change society for the better.

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.