100 stories in 100 days

Until the general election 2015

Every day from now until the general election we’re going to be publishing a story from a disabled person or a family with a disabled child. We’re encouraging parliamentary hopefuls to read just one story – so if they’re elected they better understand disability.
 

1: If I was Prime Minister

What are the four things Charlie would prioritise if he was PM?

If I were Prime Minister, I would hope to use the position to improve the lives of disabled people. With this in mind there are four changes I would immediately propose, broad ideas with one common theme: empowerment.

2: Three things the new government needs to know about disability

What

I don’t feel like I’m living, just existing. Politicians should look at my situation and ask themselves: “Would I be prepared to live like that?” And if the answer is no, they should be ready to make changes.

3: I had to vote in the car park

Why is it important that we improve access at elections?

Being seen to cast my vote is really important to me.  We must work harder to ensure the voting process is as simple for disabled people as it is for others.

4: The health visitor described Charli as a 'mongol'

How did Mark and Sarah get the support they needed?

I'd got so many thoughts and feelings, I felt I couldn't express because I didn't want to be viewed as a bad mum.

5: Campaigning for change is really important to me

Why is campaigning and voting important to Nathan?

I'll be voting in the General Election for the first time this year. As a long-time campaigner on disability issues, this is really important to me.

7: As an older disabled woman, I've become totally invisible

How does Valerie think society has changed?

I've been on my hands and knees on the pavement clearing up after my dog, and people will just walk past. They don't stop to think why a grey haired old lady is kneeling on the footpath. 

8: I've been pushed out of my wheelchair and punched in the face

How does Simon support victims of disability hate crime?
I did not expect that having to use a wheelchair would result in hostility, but sadly it did. I was verbally abused and deliberately tipped out my chair.

9: There's a change in the air for disabled people

Why does Sophie want to work with Scope?

I'm starting my new role as Patron and it's a really exciting time to be working with Scope.

10: I’ve been moved out of the way without being asked

How have people

It’s a bit like asking someone for directions, and them putting their hands on your shoulders and pushing you the right way, rather than telling you.

11: I can't walk across a room but I can play 18 holes

How has golf given Graeme a new lease of life?

Being diagnosed with multiple sclerosis was a harsh blow. But golf has helped improve my health and given me new purpose. 

12: My eldest son refers to my cerebral palsy as my 'cranky' hand or leg!

How does disabled mum Emma cope with the challenges of raising two young sons?

I've had cerebral palsy since birth. So I have no other frame of reference, but I’m pretty sure any parent feels a little out of their depth sometimes.

13: I use a communication aid to help me speak

How can technology make a difference to communication?

My eye-gaze communication aid makes it so much easier to talk with family and friends. It has taken me five years to learn to use it but it's been worth it.

14: I was fighting to stay in work

How did Jacqueline come to run her own business?

My employers were refusing to meet the recommendations made through Access to Work.  After an 18 month battle that ended in a tribunal, I felt there was no option but to resign.

15: Four things we've learned about hospital stays

How does Anna help her daughter cope in hospital?

Taking Scarlett to hospital, and seeing her looking awful, has become less of a big deal over the years, but it is always a reminder of how fragile she is.

17: I was chomping at the bit to get back into work

What did Sean need to get back into a new job?

I’d had to stop work because of illness. In time I got the help I required, but getting back into the job market was tough.

16: I can't imagine our lives without my hearing dog

How did a hearing dog change Claire

The guilt I felt when waking up in the morning to find my son had been crying all night, and in too much pain to get out of bed to get me, was indescribable.

18: I advise bus drivers on how to treat disabled passengers

Why wasn

In 2013, I had to make a complaint about a bus driver.  The company asked me to go in and speak to the management, and the bus drivers. After a couple of months they said, "How would you feel about us paying you for it?"

19: From my wheelchair I've seen humanity at its greatest

How did Justin complete a 500 mile Spanish pilgrimage?

Something inside kind of said this is something I should try, and wouldn’t that be crazy to do in my wheelchair?

20: It's been tough. But he's our little boy and we love him

How did Maxine

It can be tough having a disabled child sometimes, but he's our boy and we all adore him. Thanks to Scope I'm back at work now and optimistic for the future. 

21: There's more to me than meets the eye

What are the challenges of having a hidden disability?

I'm passionate about raising awareness of hidden disabilities. My campaign 'More than meets the eye' aims to raise awareness of the challenges people can face.

22: How I communicate with my pre-verbal child

How does Livvy make herself heard without speech?

One of the first questions people ask me when they meet my amazing 14-year-old daughter Livvy is, “Does she talk?” Well, Livvy has no spoken language. But there’s more to communication than the words we say.

23: There was no disabled loo so I had to use a disposable barbecue!

How do Kelly and Jarath deal with the trials and tribulations of music festivals?

We both get creative when people ask why Kelly is in a wheelchair. I told someone she fell out of a plane! 

24: Jumpy words, wriggly writing and headaches

What simple changes make life easier for Sinead and her children?

My two children and I have a condition that makes words move on the page. When I sit in front of a computer the screen seems to shake in front of me.

25: Injury and agony couldn't stop us achieving this dream

How did Brett and Luke help support Scopes work and achieve their dream?

It was our dream to finish the Brighton marathon. Despite injury and difficulties, we did it! 

26: Mixed Martial Arts is a physical sport, we're not baking cookies in there

How has MMA fighting changed Jack?

Cerebral palsy has given me the determination to never give up and I think that if I didn’t have this disability, I wouldn’t even like MMA – I would be too scared to do it.

27: Having a disabled sibling feels completely normal

What was Anne

None of my friends had disabled siblings, and although I read a couple of children’s books on the subject I didn’t feel they were reflective of my experience.

28: We’re all human, we’re all normal, but different

How did Christina overcome prejudice from employers to find a job?

It’s hard for young people to find a job. Then, even when I do get an interview, I have to explain my impairment and deal with people’s prejudices.

29: Too often, I've seen people left in a corner without a voice

How is Anthony working towards his goal?

My experiences as a disabled person have made me passionate about helping other disabled people who might not be able to advocate on their own. 

30: Social care helped me get three golds at the Paralympics

How did Sophie get to the very top of her game?
Ever since I was young, I really wanted to live a normal life - you know, move out of home, become independent. There's no way I could do that without social care.

31: We had lots of love still to give. That's why we fostered Grace

How can you make a difference by fostering a disabled child?

Jenny and Tom found themselves with an empty nest. With so much more love and care still to give they decided to contact Scope's fostering service. It was here they first heard about Grace.

32: What makes me frustrated? People not listening to me

What kind of support allows John to be independent?

I do things by myself, but there’s someone there if I need them. I like to choose my own food and be treated normally.

34: I never want another parent to feel how I felt

How did Tracy finally get some support?

All the children in my son Reigan’s class were invited to a birthday party, and he was the only one who didn’t get an invite. It was horrible, really horrible. I was suffering from depression and I felt isolated from other parents

33: I am in full control of my care needs

How did Holly become more independent?

I never really imagined moving out of home. I thought, even though I was the eldest I would be the last to move out, if I ever did. I guess I thought my disability was a barrier.

35: Being disabled gives me a unique insight which helps me at work

How does being disabled give Emma valuable experience?

I decided to become a lawyer because I wanted to do work that would be intellectually challenging, but which would contribute to making the world a better place. I think being disabled helps make me good at what I do. 

36:There's no sign outside - it's just my home

How has Tony

I live in supported housing now, but I was in Lingfield Avenue care home for close on 20 years. I’d always wanted to move somewhere that was less care-orientated.

37:Disabled people and their families need more support

What is the difference good family support can make?

All of the family played a part in supporting and caring for Uncle Paul.  It came naturally to us all.

38: I love helping people get things sorted out

How does Jackie support disabled people and families?

I’m working with about 20 people at any time, and lots will keep in touch for months or years as they face new difficulties. 

39: Trendsetters has been a lifesaver for me!

How does Katherine want to use the skills she

I've been part of the Trendsetters programme since I was 12. It's allowed me to make new friends, learn new skills and gain confidence. 

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40: It was important to leave a gift in our daughter's name

Why do Gordon and Sheena think leaving a legacy is so important?

My wife and I often reminisce about our daughter Rhona. We thought a good way to celebrate her life was to leave a gift in our will in our daughter's name.

41: Games disabled and non-disabled children can play together

What are Jackie

I work with both disabled and non-disabled children at Scope's inclusive nursery at Walton Children's Centre, Liverpool. Four in ten parents of disabled children say their child rarely gets to mix with children who are non-disabled - but there are so many games that all children can play together.

42: I've wanted to live independently for a long time

What are the barriers to living independently?

I have wanted to live independently for a long time. I was on the council waiting list for 12 years and in 2013 I finally found a flat.

43: We want the boys to experience things together, as brothers should

What are the difficulties Martin has faced at football matches?

My eldest son, Jordan, is a wheelchair user. We want to attend Manchester United matches as a family but have encountered so many difficulties. 

44: Good local support is vital for my family

Why are good quality local services so important for Jane

If we had good quality local services, it would make a huge amount of difference to our family. There wouldn't be the financial hardship. We would be emotionally stronger, and more united.

45: I want to make changes for disabled people

How does Jhon want to make a difference?

My name is Jhon and I’m from Leicester. I’m really passionate about making my voice heard and making a difference for disabled people.

46: Watching the Paralympics changed everything for me

What sport was Ellie inspired to play?

I watched five minutes of the Paralympics on the telly and was blown away. It changed everything for me. I watched people like myself competing and I just sat there and thought ‘wow’. 

47: I wanted to help other dads

What are the challenges of having a child with Down Sydrome?

The training i've received from Scope's befriending service has helped me support other parents with disabled children.

48: Confessions of a video producer

How did Kev change Phil

Whilst I clumsily jolted the camera about trying to track a gymnast flying over a vault, Kev was just calmly following all the action. He made everything look so easy. I was, admittedly, a little bit jealous…

49: Why I believe in inclusive education

What does Mima

I went to a special school, but it wasn’t right for me at all. I wanted to learn and do my exams, and we were singing ‘Ten Green Bottles!’

50: 50 unique stories shared so far

What are the stories we

We're sharing 100 stories - once each day until the general election - of disabled people and their families. Today we mark the half way mark. We've shared 50 unique stories so far! 

51: The system's not about people - it's about money

What does Kenneth need to live independently?

When people think about institutions, they imagine big old buildings with lots of residents sitting around doing nothing. But we were living in a new, purpose built bungalow and it was just as bad. 

52: A letter to my my mother, my brother's carer

Why was that doctor so, so wrong?

"Your son is a congenital idiot," were the doctor's carefully chosen words. They are as sharply etched now as they were 54 years ago. 

53: I had falls with my baby daughter in my arms

How did Soña take control and fight for her rights?

My support was cut overnight. All I wanted was to be able to take my children outside, but I was basically trapped in my own house.

54: We now know that Leo is going to be just fine

How did Scope help Leo

When we were told that Leo had cerebral palsy we were shocked and didn't know what to do. Now Leo is so happy and confident. We know he's going to be just fine. 

55: Volunteering helped me get the job I wanted

How did volunteering help Lesley gain new skills and make new friends?
I knew I wanted to work with vulnerable adults, probably in a caring or support worker role. With Scope's help I was able to volunteer and learn lots of new skills. That really helped me get the job I wanted. 

56: Ruby vs Preconceptions: This Girl Can

How is Ruby inspiring others to get active as part of the This Girl Can campaign?

My mum taught me to swim from when I was just a few months old and since then I've gone from strength to strength. I've won a few silver medals and one gold and would say to any girl who wants to swim, just dive in!

57: David Blunkett on growing up disabled in the 1950s

Hear more on Disability Now

Former Home Secretary David Blunkett is Britain's most successful disabled politician. He talks to Disability Now about his life, including leaving home for a segregated blind school at 12, just weeks after his father died.

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58: Behind the scenes of a information and support worker

Why are regional response workers so important?

Ian Jones Scope's Regional Response worker talks about how as a disabled person he supports other  disabled people and their families.

59: Performance, fashion, wheels and me…

What are the challenges Charlotte faces in the acting world?

The acting world can be a tough place to succeed. I've definitely found a lot of challenges but my passion and ambition to succeed hasn't been diminished! 

60: Working mother - a lifestyle choice?

Should the mother of a disabled child work?

Why shouldn't the mother of a disabled child have the same opportunities to work as other mothers?

61: 'Body attack' changed my life

Why does Gerald love fitness classes?

I go to 10 classes a week ranging from 'body combat' to 'body attack'. I love all my classes, all my instuctors are amazing, I have made so many friends.

62: I'm running possibly the world's only wheelchair spin class!

What inspired Kris to become a fitness instructor?

Being disabled doesn’t mean you need to be wrapped in cotton wool, it just means you need to think creatively about exercise and fitness. 

63: It has a huge psychological impact

What are the extra costs Sulaiman and other disabled people face?

I don't want to sit at home watching Jeremy Kyle all day long. I want to go out, socialise, commute like any Londoner, go to work and pay taxes.

64: This kind of set up totally gives Luciano what he needs in life

Why is independent living the right choice for two college friends?

Luciano and Tom get on really well so when the idea was proposed about them living together, it just didn’t need a second thought really.

65: I know you're trying to be nice

How does Lucia

We get people talking loudly and slowly, and people saying ‘What’s wrong with her?’ The answer is that nothing is wrong with Lucia.

66: Work experience gave me a new positive outlook on life

How did getting work experience help Michael?

Getting a work experience placement with London Underground really improved my confidence and gave me a new outlook on life. I now think "I can do this!" 

67: How do you solve a problem like James?

How does mum Holly raise awareness when she

I want to help raise awareness of what is an all too often misunderstood condition. 

68: Public Transport should be accessible for everyone

Why do accessible tube stations matter so much?

I lost out on job opportunities because of inaccessible public transport. That's why I started campaigning  to get things changed. 

69: Without Ian I don’t know what we would have done

How did Ian help Kelly come to terms with her son

Seeing Ian, who has quite severe cerebral palsy himself, really gave us hope. He drives a car, he gets out and about, he works - and I thought that if he can do it, then Lincoln will be able to do it too.

70: Just because Barry’s got a set of wheels doesn’t mean his ears don’t work

How has Barry

Barry got a new lease of life when he moved from a care home to his own place. Barry and his support worker Judy talk about his new life. 

71: If I can make it we all can

Rapper Truth on the importance of music in his life

I'm Truth and I have cerebral palsy, but that isn’t what defines me. There’s more to me. I'm a rapper, musician and producer. Music is my escape. With music there are no barriers.

72: I feel like I'm going in the right direction

How is Felix working towards his dream career?

I’m working towards being in employment. I’ll have to be tough, because I’m not quite where I want to be yet, but I feel like I’m going in the right direction.

73: My dream is to be accepted at school

Why does Chloe want people to see her differently?

The stares are normal. It's not every day you see a splint. It's the glares of disbelief that are upsetting. What you see is a tiny part of me. 

74: Girlguiding made me feel valued

Why is girlguiding so important to Caroline?

I had support, but I wasn’t smothered. I was allowed to make my own mistakes, but I knew there would be someone there to help me work out what to do differently next time.

75: I'm an endurance athlete with one leg

Why is running a big part of Chris

In 2008 my wife, Denise, and I lost our left legs in a road accident. With lots of encouragement and modern technology we’ve been able to get mobile again.

76: I want disabled models to be the norm

How did Hayley become a model?

I’ve always had a big interest in fashion. It angered and upset me that disabled people were rarely, often never considered within advertising and marketing. 

77: Lazy? No, just disabled... my invisible impairment

Why does Carol have so many awkward moments?

I get stared and sighed at when I park in a disabled bay, as people realise I’m not elderly or in a wheelchair. People have literally run out of buildings to tell me to park elsewhere.  

79: Writing has given me strength

Why is toast so meaningful for Alice?
My experience of raising two boys with a disability has been an emotional rollercoaster, and I have learned to navigate through by finding strength in my own way, more recently by writing a book.

80: Technology brings me freedom

Why is having the right technology important?

Many students at Scope's Beaumont College use assistive technology to communicate.  Here five young people explain how technology allows them to be more independent, both in their education and social life.  

81: I love seeing employers changing their attitudes

How does Emily support young disabled people to find work?

There are so few employers who are willing to take that chance with a young disabled person. I get really passionate about what I do, maybe because I'm disabled myself. 

82: There are some perks of dating someone with a hearing impairment

What was Jennie

When you are getting down to things and having a good old snog, the last thing you want is your hearing aids whistling every time the hot man - in my mind he is always hot - puts his fingers through your hair.

83: My husband and I had to sleep separately

How did Sarah

It was difficult being in separate rooms because Nick is my true love. But part of Flo’s autism is her desire for routine and giving her that routine, at least, helped in some ways. 

84: Fostering Rosie has changed our lives so much

What happened when Rosie came to stay?

I’d always thought I’d like to foster disabled children, but I thought I’d wait until my children were older. But then one day at the bottom of my payslip was a message: ‘Interested in fostering?’ And for some reason, I couldn’t stop thinking about it. 

85: Now I describe my disability as a strength

How is Azar pursuing his dreams?

Without Scope I don‘t know what I’d be doing now. I’d be jobless, probably at home, playing my X-Box, watching TV. I wouldn’t be where I am today and I wouldn’t be able to explain my disability in a confident manner.

86: I want the students to see they can do more

How does Rhys inspire the students he works with?

When I was at school, many people thought that if you were disabled you should appreciate that you had a school to go to. There was no focus on what next.

87: My boyfriend googled how to kiss a wheelchair user

What are Emily

In a perfect world, there would always be a chair nearby for a tall guy to sit on when talking to someone of a shorter stature or a wheelchair user, and everyone would instinctively know how to support somebody with a visual impairment.

88: Before, I didn't feel like I was part of the world

How was Jamie

Now everything’s changed. Now, I feel I can do anything. Not quite invincible, but not far off! After college I’m hoping to get some extra work and start my acting career. What happens then, who knows. 

89: I want my son to know there's nothing he can't do

What happened when Kelly made a stand?

When my son Joe couldn't go and see The Theory of Everything because our local cinema wouldn't show it on an accessible screen, our story made headlines. I want to show him that it’s okay to say: ‘I want what everyone else has, please’. 

90: The extra costs that come with our beautiful boys

How does Emily meet the extra costs of disability?

I'm disabled and two of my children have autism. The boys have a lot of difficulties with food and there’s lots of wastage. They’re also very faddy – one day they want eggs on toast and the next day it’s oranges.

91: The best future for my son

How did Dionne get the right support for Jayden?

I was 21, terrified about the future and extremely depressed. There were days when Jayden cried endlessly and didn’t sleep at all. I was always on standby for something to go wrong with my son and I hated feeling helpless. 

92: Our adorable son enriches our lives every day

What is life like today for Benajmin and his family?

Doctors offered us a termination if we wanted one. But no one said "He might be happy. You might still be able to do the things you wanted, just with a little more planning. He might enrich your lives in ways you never imagined."

93: From a prison cell to the Paralympics

How did Craig

I’m the manager of a YMCA gym in Peterborough that works specifically with disabled people. Five years ago my life was very different – I’m not proud of my past, but it’s certainly shaped me to be the person I am. 

94: Being a mum in a wheelchair has its benefits!

What are the creative ways Marie spends time with Mark?

I can’t lift Mark now but we always knew this time would come - it was inevitable. But I can still do so much with him - I can feed him, bathe him, play with him, talk and sing to him.

95: It felt like a weight had been lifted

What difference did a diagnosis make for Oliver

It was hard putting him through it, watching him being tested. He would cry as soon as somebody came near him. 

96: I was told 'she won't do anything a normal children do'

What happened next for Micheala and Venice?

When my daughter was diagnosed the doctor said ‘It’s called cerebral palsy and she won’t walk, ever, and she won’t dance, she won’t run, she won’t do anything that normal children do.’ 

97: It took me 30 years to make myself heard

What did Mandy do when she got her communication aid?

I have cerebral palsy and use a communication device which I operate with the back of my hand. I did not get this device until I was 30 years old. Until then, I had no way of communicating except with my eyes and facial expressions.

98: This is different to living at home

What happened when Tom moved to a transition service?
At home in mid-Wales, there wasn’t much for me to do – not many jobs, and definitely not for people who want to get into filmmaking. There is a buzz in the city that I missed.  

99: I pay hundreds in extra costs every month

Why can
My son Kyle has Down's syndrome and autism, and I am also disabled. We face a lot of problems that people don’t realise exist, and some of them are costly.
 

100: I'm frightened of needing the loo

Why isn
How would you feel if you couldn’t have a drink of water, because there was no one to help you get to the loo? That is the situation I have been in for the past few months.

How can you get involved in 100 stories?

How stories make a difference

Most people don’t know a disabled person, don’t really understand their life and as a result can feel awkward or avoid interaction – that goes for politicians as much as anyone.

At Scope we want the public to get to know disabled people, so they understand them better and feel less awkward.

One way we do this is through stories. We give disabled people and their families a platform to share their story. Nothing is more powerful when it comes to challenging attitudes.

Ahead of the election we’re going to publish a story a day for 100 days from disabled people and their families.

Many of our storytellers are making sure their local politicians see or hear their story.

We hope this will help improve politicians’ understanding of disabled people and their families, and lay the foundations for policies that make this country a better place for disabled people.