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.
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.
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.
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!
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 todayand help us provide services for families and provide the vital support they need.
Peter’s daughter, Elara, has cerebral palsy and has used Scope’s Sleep Service. Peter wanted to help raise awareness and money for Scope so organised a fundraising event.
In this blog post, he talks about his fundraiser and how you can organise your own.
We saw how hard it is for some parents to cope
My daughter Elara was born 8 weeks early. The doctors and neonatal department soon discovered haemorrhages and believed this happened whilst she was still inside the womb. As time progressed, it was apparent that she had hemiplegia which would affect all her limbs especially her right leg and this was an indicator that she did have cerebral palsy.
We’re active on social media and on Facebook groups for parents of children with cerebral palsy and we saw how hard it is for some parents to cope. While the challenges facing Elara are comparatively mild others aren’t so lucky and the condition can have a significant impact not just on the children but on their families as well.
Visiting a Scope sleep clinic
My wife visited one of Scope’s sleep clinics. We found it useful and being there confirmed we were doing the right things to get Elara to sleep and we now know what Elara needs. The service was easy to access and was only down the road from us. We gave them a call and luckily there was an available appointment on the day. These services are so vital to helping parents in the same position as us.
I was only meant to do a head shave
A friend of mine did a head shave for charity a few years back and I thought it would be a great event as people always want to see their friend or colleague do something daft. So, I wanted to help raise awareness and money for Scope.
My target was £250. I was only meant to do a head shave, but I mentioned in passing to one of my colleagues asking how much it would take to get sponsored to shave the beard off.
It then spiralled out of control in a good way, my colleague emailed out that we needed to get to £750 donations to get my beard shaved off. To my surprise this happened.
The support from my family and friends was brilliant especially the support from the office.
Just before the shave we were below £600 but, on the day, someone made a large anonymous donation to get to the £750 target.
My Chief Executive Officer came back from sabbatical and increased the donations to reach £1000. I was so overwhelmed by the generosity that everyone showed.
Aside from seeing the generous donations come through for Scope, the most enjoyable part was the shocked faces from people! I was getting lunch just after the shave and people who I worked with walked straight past me.
The support from Scope was great and it was nice to see that the team were keeping in touch to see progress and how things were going. A lot of places will leave you to do it and you won’t hear from them.
It’s such a good feeling knowing you can help
I would absolutely recommend organising an event like this or any type of event for charity. Personally, it’s such a good feeling knowing you can help and the effort you put in gets a tangible result, to invest in the services to help disabled people.
I’m a firm believer of paying it forward to help each other to make this world a better place. It is important to understand that everyone is bound together and can achieve great things.
My target was only £250 however through the generosity of colleagues, family and friends I was able to raise £1085.18 for Scope.
I wouldn’t do anything different, I think I really hit the nail on the head with this event. However, if I was to do it again, I would organise a different type of event. Something like a physical challenge.
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.
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!
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.
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!
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.
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!
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.
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.
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.
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.
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.
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.
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.